The rollercoaster was in full force this week as Keith, and I met with doctors and processed what the next opportunity is for me and prolonging my life.  After we met with the clinical trial doctor, we were both feeling different things.  I was reeling from the gut punch of yet again leaving my family and sanctuary while Keith was ecstatic that we have yet another opportunity to find something that may help.  He understood my tears as I heaved and he held me, and I understood his happiness we both just needed some time to process.  So that is what we did.

We discussed the trial and all the things that go along with it.  The emotional heartache of leaving again the financial burden which will put us deeper into debt, and all the logistics that go along with moving somewhere for 2-3 months.  Where to stay? How to get around? Who will go with me? And so on and so on …… However, since we have done this before we do feel like we know some of the answers to the major questions.  You see there are a few parallels with the 2 Houston trials I have been involved in.  First, is that you must live there for an allotted time, second is that the first 6 weeks is vigorous with lots of appointments with the frequency reducing the second round if I make it past the first round, and you always need someone with you.  The major differences in the trials are that the new one has individuals that have Leiomyosarcoma in the trial and some of those individuals are responding very well to the treatment.  This of course peaked both of our ears up because out of all the treatments that I have done not many will say that they have had any results with LMS.  Like I have said before it is a tricky rare type of cancer that has the luxury of morphing and changing to dodge treatments, so this sounds very enticing.  However, it is different for everyone, and they don’t make any promises.

So, after lots of praying and talking I made the decision to move forward with the trial and immediately felt at peace with my choice.  I feel like this may be the thing that just works for me, but then I warn myself to not get too hopeful, remembering how shattered I was when the last trial left me with more growth than I had ever endured.  I am working to put that behind me, giving it to God and trusting that I am moving forward.  I am not afraid, and I truly believe that this is my path.  Ale and I cuddled, and he reminded me that he likes Houston and coming to visit me and that he will be just fine.  Kiara recognized that this sounded like a good opportunity, and she is excited.  I wonder how my kids ride the rollercoaster with such ease. Is it just that it has been part of their lives for so long that getting on and off is routine? Who knows,I do know it breaks my heart and makes me beam with happiness at the same time.  The rollercoaster continues.  The ups and downs and nonstop changes are my life, for the rest of my life and I guess it is also my family’s life so we do the best we can with what we know and feel in the moment and let the rest go.

As we prepare for Houston and all of the logistics fall into place, we once again are grateful for those of you who have donated and supported us.  The funds that would have gone towards bills will now give us the opportunity to help with the financial burden of living away for 2-3 months.  They will help my family come to visit, pay for rent, flights to and from Houston for me and so much more.  There are no words that will ever be enough to let you all know how much you have touched our family.  Just know that we are grateful and we wish you all nothing but health, happiness, and great days.

2/13/23

Pivot is the name of the game of life.  Not just in the world of illness but all of the time.  We are challenged with things we never thought would come our way, opportunities that come out of nowhere and thoughts and dreams that drive us in opposite directions.  So what do we do we PIVOT, we adapt, we change and we figure it out because if we don't we risk being left in the dust.  The whole action of pivoting is not easy or comfortable or fun at times but in order to survive we need to master this skill.  It is a skill that I learned as a child outside on the playground, in the neighborhood, in my house and every day of my life.  If something was not going my way or needed to change it was just what you did.  No parent helped me learn this skill or was there to explain it to me or save me from having to figure it out.  You figured it out or the game went on without you.  To say that the act of pivoting and becoming a master at it is one of the greatest gifts we can give ourselves is an understatement.  It frees us from the "what if?" or the worry of what is next, you just move forward because you have to.

2/15/23

Tomorrow I will have another chemo infusion, last week when I returned to the spa my body was rejuvenated, and I felt strong.  The nurse brought over the bag and then indicated that this chemo was a push.  Basically, what that means is that they hook me up to a bag of saline and push the syringe of the cocktail into the line.  The dose looked small as it was not even the whole syringe.  “Is that all?”  I asked.  The nurse smiled and reminded me that it was chemo and the toxicity was high but then with some humor asked if I wanted more.  I smiled and denied the kind offer.  I felt hopeful and ready for the small treatment.  I was sure that I could take it and recover quickly and without a lot of side effects.  The push was administered, and the bag was finished all taking about 45 minutes, a long way from some of my 8-hour days in the spa.

It is Wednesday, and I have another push tomorrow.  I have lost a week thinking that all would be ok.   Don’t get me wrong, I have pushed myself to walk a bit, I was able to lie on the couch and be with my aunt and uncle while they visited for the weekend and I to try and function as best as I can, but when I peel back the thick layer that I wrap around myself to protect those around me I sit in the reality that I am in pain, my mouth is filled with sores, the fevers overtake me every night, my coughing has started and is a bit scary, and the exhaustion is beyond what I am used to.  I push through it but always wonder how long it will be worth it.

Keith moves around the house from cleaning to trying to figure out what I will want to eat. The fear is apparent on his face. He hates to see me suffer.  Alessandro helps me up and squeezes my hand when my coughing fits come, constantly asking “Mom, you OK?” I answer that I am in a whisper, and he leans in for a hug. He knows I am not, but I think the idea that I will be better when this chemo is done is helpful.  My parents come daily with love and help in any way they can.  My dad works in the yard, and my mom begs me to eat something. Hopefully, today when they come, I will be able to walk with my dad for a bit.  You see it is sometimes easier to shield everyone from the reality of what my body feels like.  They cannot change it, and there is nothing that they can do to take it away so why let them into the darkness?  But then I realize that only by sharing the darkness is how we get to the light.  So, I help those at the spa, and I encourage myself to open up to my family more and more, although it is not easy.  Pain of any kind is tough because it eats away at you, it interrupts your sleep which makes your days harder and then those hard days fall into exhausted nights where sleep only sneaks in once in a while. So, for those of you in pain, I see you, and I know how you feel.  Lean on those around you even when you don’t want to let them know the extent of your pain whether it be physical or mental.  For you see, they are one in the same, and they both need attention.

To help my heart, I look for the beauty in each day.  My orchids are starting to pop reminding me that I have been blessed with another year.  The birds continue to bathe in our bird bath and sing at the top of their lungs every morning.  My tomato plants are bursting with deep red tomatoes almost ready to be picked.  The other day I asked Keith to get me into the car just to drive around, I rolled the window down and felt the fresh air on my face.  The sun was high in the sky, but the temperature was perfect.  The roads were packed with people rushing to get from one place to the other, and I wondered why everyone is always in such a hurry.  Did I use to hurry around like that?  Thinking that there was never enough time?  I am sure I did, but now my days are different.  Slow and steady as I move from my bed to the backyard to the couch.  I am blessed to walk in some amazing parks when I have the energy and will continue to plan to make memories with my family for as long as I can.  I will push the pain through just as they push the chemo into my body praying that maybe, just maybe this stops the growth so I can take some time away from the spa.  My body is tired but my mind is determined.

May you stay strong, have faith and feel the healing that is within you, and may you make every day a great day!!

2/8/23

It has been a while since I have written so I thought an update was in line this morning.  I returned from Miraval Wellness Resort late last night after spending the past 4 days there.  This trip was orchestrated and financially supported by Keith’s University of Tampa soccer family.  From players that had played for him to friends that he played with over the years and many more who just cared about me.  The gift was something that I never expected and have been so excited about.  The resort is in Austin, TX so Amy, my friend and the wife of one of Keith’s teammates was the one to take me, push me in my wheelchair through the airports, help me up and down when I needed it, and most importantly processed with me daily about my experience and how I was.  There is no way to make anyone understand how this trip impacted me and my ability to continue my fight.  There are no words that would equal the amount of gratitude that has filled my heart and the amount of love that has infused my soul with the gift and the experience.  All I can tell you was that it was amazing.  From prayer circles to guided meditation classes, spiritual guiding to ceremonies, energy healing, and even great spa services topped off with amazing food and a view that would not quit.  I am full and ready.  So, Thank you to my UT family!!!

I am home and will return to the chemo spa later today.  The last scans showed slowed growth but nonetheless growth.  I will continue to try all of the options that the doctors throw at me as long as my body can handle it along with implementing alternative healing as well.  The chemo is one that is in a “family” of some that I have had before.  It has no data on working on Sarcoma, but it is worth a try, so that is what we are doing.  I will do the first 2 rounds (4 infusions, 2 weeks on and one off) and see how I am holding up.  My goal is for quality of life, so this is important to me regarding chemo and poisoning my body.  One day at a time is what I say right?

I am once again amazed at the outpouring of support that you all continue to shower on our family.  We are grateful and full of love and appreciation.  This road is not easy, but it is my path and I have accepted that this is where I am supposed to be on this day at this moment.  It used to be hard for me to welcome my reality or fully accept it but fighting it did no good and was not beneficial to me or my situation, so I accept, I love, and I pray that God will continue to show me the way to more days on this earth.  I pray for ease from my pain and that pain is released from all people affected by cancer.  I pray for the peace of mind and for all people struggling in one way or another that peace touches them.  I pray for joy to continue to be my guide as I am gifted with such blessings that bring me infinite joy and happiness.  I pray that god wraps my children in love and understanding to continue this journey which has taken so much from our family but has also taught us so much that we could have never learned in any other way.  I pray that we all see the power of love and acceptance no matter what or who or how.

This my friends, is my greatest prayer…..is that love drapes over us like a cloak showing the utmost power of its existence.  I pray for all of you, and I send you gratitude and love.  As I continue on my journey I remind myself that we never know what will tomorrow bring so I remind you to Make it a GREAT day…..because that is what I will be doing……

Love is love is love is love

12/30/23

As the holidays crept up and the business of the time of year consumed our lives, I felt less and less like writing.  Maybe it is because my kids are home and my husband is off, and all I want to do is hang with them. But I know that is not the whole reason. I write in the mornings, and my family likes to sleep in, so it is always just me. It is quiet and a perfect time to write.  So, I began to reflect on why I have not written in a while.  I have come up with the fact that I am pissed off.  I am not used to feeling angry, and when I do, I can work through it pretty quickly but it has seemed to linger a bit.  I guess my hiatus from writing is because I feel like if I was to write that I would not have anything positive to say.  However, I really don’t care.  I know that anger is a feeling that everyone experiences throughout their lives, and I am giving myself permission to feel it and work through it.  It may take me days or weeks I am not sure.

You see the trial ended and everyone knows it did not work, I opted for trying a mixture of one chemo that has worked in the past with another that is so old no one really uses it anymore.

Needless to say, 4 rounds kicked my ass, and I am glad to have a few weeks off before scans.  My body hurts and my pain keeps rising which makes me think that it did not work.  I am pissed that there is not anything else that is proven to work.  As I have said before, everyone has a cure for cancer, but no one actually has a cure for cancer.  I am angry that I don’t have the energy to do the things I used to.  I am pissed that when I make plans, I do so with the thought in the back of my mind hoping that I will be here to participate.  The list could go on and on, and it has for a while in my head, but as I said, I am working through it.

On the flip side, it is such a strange feeling because as angry as I am about my situation, I am also so grateful for all that I have.  I guess this is the yin and yang of life, right?  Whatever it is I am sorting it out one day at a time.  All of it got me thinking of the Uber driver in Houston I had. Interesting guy and someone who got me thinking and writing.

So I continue with my days, I try to answer questions for myself and remember that all of the anger in the world won’t change my situation (although it makes it feel better sometimes), so I let it go, open my eyes to the amazing things all around and give thanks for the abundance of love that I feel flowing my way daily.  All of that washes away anger better than anything else.

I am sending you all my best wishes for 2023.  I hope it is filled with one thing in particular….. HEALTH mixed in with a lot of love, family, and fun!

Happy 2023!

Celebration of Life, and all of the blessings it brings

Please consider this an invitation to a celebration of life, my life, my family, the people who have touched my life and those whom I have touched. So, if you are one of those people (if you are reading this, you are), please mark your calendar and join us...

May 14^th, 2023

4:00 – 9:00 PM

Anna Maria Island, FL

More details will be coming, but I wanted to get the date out so those of you coming from afar will have time to plan. AMI is a wonderful sleepy beach island that is great for a long weekend, or stay for the week!  

Over the years death has touched my life in many different ways.  When I was young I remember a classmate dying and the feelings around that being fear and utter sadness.  Death struck again while on a camping trip when we were given the news that our uncle had died in a car accident, again, I remember being flooded with confusing and angry thoughts but also being so sad that I did not get to say goodbye.  Of course when you are in your teens and young adult years you feel invincible and that nothing is ever going to happen to you so I remember feeling shocked when yet another death crept in with a friends sudden death.  Death and I took a hiatus for awhile and to be fully transparent I don't remember even thinking about dying or death for a long time.  I know it sounds weird.....why would you think about death anyways right?  But think of this, it is the only thing that we really know is going to happen.  Everything else is a shot in the dark.  Yes we can make plans, and we should, but really nothing is as definite as death, and nothing is as infinite as our lives.  We come and we go, we are born and we die.  Life continues with or without us.  You could say we are finite players in the infinite journey of life.  That being said, living life to the fullest is our goal, or it should be.  So as I reflect on my life I am happy to say that I have lived my fullest life and will continue to do so for a long time.  A life full of love and laughter, gratitude and challenges surrounded by people I love and helping those who need it.  This is my definition of a "good life".  I don't need a fancy car, (although my husband would love one- haha), or a grand house.  I need love and thankfully I have so much of it that my heart is overflowing.

I say all of this with a great understanding of pain and struggle, loss and grief and with the unknown draped over me like a dark cloak.  I now feel that it is easier to see the gift of life with the pain of what my journey has gifted me and please know, I do not wish the pain or journey on anyone, but I sure do wish everyone could see life as I see it now.  How different the world would be!

I guess all of this brings me to where I am now, getting ready for my last of 4 treatments that have been hard on my body and brain (although I still have hair).  Hoping that I will be feeling a bit better after this one to enjoy Christmas day with my family.  Feeling grateful for every day that I have and quite determined to have many more to be with my family, to continue to grow and to help more people.  However, as my dear friend said.....You can plan for death and still have hope for more life .....

So as I looked at planning and preparing, I thought of my life, the people who have touched me and the people that I have touched.  I thought back to the funerals and celebrations that I have attended to say goodbye to those that have passed and I realized that I have been given the gift of time. I don't know how long, as none of us do, but I am here now.  I also realized that I want to be present for my celebration!  I want to hug those who love me, hear all of the wonderful things about our lives together, hum to my favorite songs and dance with the love of my life.  I want to hold my children and tell them over and over how proud I am of them and that I will always be with them no matter what, I want my family and friends to surround me and breathe more life, more days and more strength into me, I want to watch the sun kiss the sea and I want to sink my toes in the sand with my girlfriends.  I want to celebrate me......

As you are running around town doing last minute shopping or in the kitchen baking cookies with those you love or just sitting on your couch being exhausted from all that the holidays bring, stop..... just for a moment, take a deep breath and give yourself the gift of finding 3 things you are grateful for in that moment.  Your life can change in a moment so please take a moment to remember how wonderful life is and all that you have to be grateful for.

Make it a great day!

December 7, 2023

Wake up call

The days continue on and I am close to my last of 4 infusions of the current chemo.  Full transparency…..this one has been tough, I can’t figure out if it is just because my body is so tapped out with toxins or if my mind is more sensitive? Either way it has pushed me to the brink with utter exhaustion, horrible nausea, headaches and the worst chemo brain ever.
Thankfully this only lasts for about a week and I do get some relief from lots of meds and fluids.  I have reinstalled my frequent flier pass to the spa and have gotten to know the new staff.  I have to say I did not miss being there daily but I make the most of it.

Last night as Keith and I laid in bed we watched Jimmy V as he launched his Cancer research foundation in 1983 (or around then).  A foundation that continues to raise a ton of funds for research.  I was blown away, once again, with the statistics that he rattled off regarding what I would call “common disease” of cancer.  Back then it was 1 in 4 people receive a cancer diagnosis.  I’m inclined to believe that has increased. That to me is flabbergasting and horrifying, even if the number has increased or not.
I’m not sure where I’m going with this but to just put it out there. Anyways, I fell asleep to individuals sharing their stories about losing loved ones or battling cancer 4 times.  So you can imagine my mindset and also assume that possibly sleep was not quality and you would be right.

My night was a tossing turning night with lists running in my head, memories flooding my mind and short snipets of dreams.  I woke up earlier than usual with an unsettled mind and a tired body.  With one snapshot of a dream continuously returning to the top of my thoughts.

I was sitting in a room with tons of other people.  I am guessing it was my mind’s interpretation of a doctors office.  There were orchids all around so while I sat I focused on the beauty.  People were going in and out of a door, I don’t remember names being called or actually any sound, it was like everyone else could hear but not me.  The room was dull and sterile but the orchids exploded with color in contrast to the white washed walls.  When the individuals exited the door they looked lighter and happy.  At some point I knew it was my turn so I stood up and walked to the door, it was heavy and cold and there was a line behind me. I pushed and pulled and it would not budge, the line stacked up but no one said a word.  A little girl walked right by me and entered the door without any effort.  I stared in disbelief then I was in bed waking up.  It seems that there was way more to the dream but that’s as much as I can grasp.  As I lie in bed writing, you can imagine my mind trying to decipher the meaning of the snipet.  I remind myself of something I know to well, we are not in charge. Ever. Not even in our dreams.

So I embrace another day, even with a 5:12 wake up! I am excited about this day, this moment and the opportunities that will come my way today.  I pray for all those affected by the nightmare of cancer but I remind myself of all of the things I have learned from it.
I wish you all a GREAT day and may you and your loved ones never be the 1 in 4.

Cancer can steal my body but it will never steal my mind, my heart or my soul.

All of my love!

11/7/2

The subconscious guilt that lies deep within

It has been almost one week since I returned to the spa for my first of 4 infusions of our last chemo mixture.  I went in tentative and a bit nervous just due to the fact that I knew that once again I would be submitting my body to the poison potion.  Of course, I was also positive and confident that I was strong and that I could tolerate it well.  Tuesday’s infusion went without a hitch, the nurses are mostly new and only a few of them knew me.  We all caught up and I met the new additions.  The bonus was that they let Keith stay with me due to the fact that it was my “first” chemo.  I laughed when the young new nurse told me that, she followed it up with “I know it is actually not your first…..but it is your first of this kind” and so the drip started.  The hours went by and I did what I always do at chemo.  Write, emails, watch brainless videos and try to sleep.  When I finished up I was feeling pretty good.  Wednesday came and besides very little appetite and less energy I seemed ok, then the 24-hour mark hit, and I was down.  My eyes swelled up, the fever came, and nausea like I have not experienced.  I did what I could to take care of myself but by this time my body had totally given out on me.  I could not get up on my own or even walk a few steps without someone helping me.  I took the nausea meds, dosed the Advil, and prayed for sleep.  Keith picked up my mom so when I woke up she was there to encourage me to eat and do anything I needed. This continued all week, yesterday I woke up and was able to stand up and actually eat, although I have no appetite.  Days lost in an instant. I went from feeling strong to struggling to take a shower.  This chemo sucks ........

I found myself feeling so defeated.  How was it that just 48 hours before I walked 4 miles and was functioning?  This is a strange thing to admit but I am wrestling with it and writing things makes them better so here it goes.  I have been feeling guilty lately, not just like in the past week, but since I've been in Houston.  I let it go and it comes back.  I know it is not reasonable or even valid but it is there.  Why do you ask do I feel guilty?  Here is the list that runs in my head….

I feel guilty that I can not be the mom I want to be

I feel guilty that I can not be the wife I want to be

I feel guilty that my parents are taking care of me when this is my time to take care of them

I feel guilty that my children have to carry the burden of my illness

I feel guilty that I can not help more with things

I feel guilty that my husband has the constant worry that something terrible is going to happen at any given moment

I feel guilty that for years my community has supported me in so many ways and I will never be able to re pay them

I feel guilty that our lives are so altered in every aspect due to my illness

I feel guilty that I feel guilty

Guilt is not a feeling I have a lot of experience with, due to the fact that I have not felt it much throughout my life.  So dealing with the extreme guilt has been difficult and somewhat discouraging.  That being said I will push through, climb over or go around (is that the saying?) to get to the other side and leave guilt in the shadows behind me.  It may take a while but I know that I can do it.

Trust me I know that feeling guilty doesn’t make sense or is reasonable like I said, but there it is.  So, I work to release the guilt and turn it into something good, and so I share hoping that someone somewhere will get some help reading this.  And that brings me to a request that I do not feel guilty about. If you have read this I am guessing that you read my other writing and I hope that you have gotten something from them, maybe I have even helped in some way.  I have been told by many people to write a book, I have been thinking about it for a long time and I would like to do it, but I have no idea how or where to start and I don’t have the energy to research, market myself etc.  If you have the knowledge, have written or just have the information I would love your help.  My mind is mush so I just need someone who is willing to be my person from start to finish.  My hope for the book is that it will help others and if I get lucky and it sells any copies the proceeds will go to helping our family with the ongoing medical expenses and to tick off things I want to do with my family on my bucket list

I hope that your day is guilt-free, this is what I am going for today and of course, I will find many ways to make it a great day.

Mara home with her family now

GoFundMe link is HERE

Sunday, October 30, 2022

The Positive Sandwich

About a week or so before my scans I started feeling them. Random pain under my ribs, the lump on my arm getting bigger, the pain in my back increasing, these did not stop me however.  I continued to take care of myself with walking and manifesting that the treatment was working, but also subconsciously bracing myself for the news that it might not have worked.

As my mom and I sat in the Clinical Trial room I just focused on breathing.  My mom was armed with our notebook and pen and after a young fellow doctor came in to meet with us.  I have done this many times and I know the protocol of how “giving the news” goes.  I could see it in her eyes and my stomach began to drop.  She started the conversation with going over my labs, indicating that they looked amazing and that my liver function was stable, she then started to comment on how good I looked and applauded me for taking such good care of myself.  Then it came…..she pulled the paper out and began to go over the scan results.  At this time I was just on autopilot.  I already knew the news and was bracing myself for how bad it was.  Unfortunately, it was bad.  All my tumors grew with vigor, and they added some to the party.  The positive sandwich….she ended with how great it was that I was doing so well and that I was so determined to keep moving.  She then told us the doctor would be in as well.  I found myself bubbling with anger.  Why? Why do I have to meet with the doctor to tell me the exact same thing that she just painstakingly went through tumor by tumor.  I get it ….it didn’t work, I was not continuing, and I was ready to walk out.  I took a breath and wiped my tears away; my mom squeezed my hand and I assured her that I would be ok.  The clinical trial doctor came in and actually apologized for the growth, he indicated that scientifically it seemed like the trial was the right fit.  I nodded my head and just asked that they figure it out for the next person.  Off he went and we were free to leave.

From there we walked right to my oncologist’s office to meet with him since I was leaving the next morning.  He recommended pulling one chemo that I have had before and coupling it with the last chemo that we can try.  I let him know that I would have to think about it, and there was no way I want to live my last days sick.  He agreed and encouraged me to do whatever I feel is right for me.  We left the hospital and headed back to the apartment.  Thankfully I had already planned on returning home on the 20^th for a long weekend, so I was almost packed up.  The last few things were just emptying out food etc and packing up the last things.  I powered through and got everything done with my mom’s help.  I was still spinning from the positive sandwich that was handed to me once again.  I felt split open with emotions spilling out.  Of course, the thoughts of getting home kept me moving forward.  I didn’t sleep much that night and my mind was mush….breathe and then breathe again.

Arriving home was the healing that I needed.  To be able to hug my husband, kiss my son and sleep in my bed took most of the anxiety away.  The one thing that was missing was Kiara, Keith and I talked to her about coming up to Tally so we could all be together.  We were not sharing the news over the phone.  She let us know that she picked up a bunch of shifts at work and that she may be able to get off on Sunday.  Little did we know that she was on her way to Bradenton to surprise us on Friday.  She called and asked what we were making for dinner, I told her what we were doing and she said “good”….I was confused….” Yes it will be yummy”… she answered with “ good ….because I am in the driveway!!  Surprise!!”

I threw my phone burst into tears and ran out of the house.  She was home full of love and smiles and I could not have been more happy to have the 4 of us together.  After the hugging and crying and unloading the car both kids sat down and said…..

“OK- can we have the cancer talk now so we can process and have a good weekend?”

Keith and I looked at each other, we have had the “this did not work” talk many times so it wasn’t like this was something new for us.  But this time we both knew that we are at the end of traditional medical treatments.  This was different.  We all sat together and slowly I began to explain that the treatment did not work, and that my cancer has progressed.  We shared about the last treatment that we are going to try and the fact that we will only do 2 rounds of it to see if it is working.  I shared that I am not stopping the fight, that we are going to try alternative methods as well.  Mushrooms, juicing, cannabis…..the list goes on.  You see everyone has a cure for cancer but no one really has a cure for cancer.  But the reality of this talk hit us all hard and we all sat holding each other.  We all process different so that is what we did for the rest of the weekend while making the most of our time together.  There is no way to explain the pain you feel when you need to tell your family that yet again something did not work.  There is no way to soften the anger or frustration and I will never be able to answer my children’s questions of “why you mom?”  “why us? our family”.  What I did share with them is that we are so amazingly blessed in so many ways.  I am not feeling crazy sick and I am still functioning.  We are all waking up every day and are given the opportunity to make the most of our time together and in life because we know how precious it is.  We talked about how so many people did not wake up, or did not know that it was their last day.  None of this made my situation any better, but it sure does help to put things into perspective.

Our weekend was filled with tears, snuggles, laughter and lots of fun.  We decided that I don’t want to go too long without seeing Kiara so we will go visit every couple of weeks.  I met with Brian and I will start the chemo regimen on Tuesday and we will once again put our faith and hope into the fact that this will work either by stabilizing the growth or by shrinking the lesions.  I will take whatever comes my way with as much grace as I can.  As my good friend told me ….. it is ok to plan for death while still have hope for a long life, so that is what we are doing. Keith and I were able to spend a few days alone together and the time was so wonderful.

Although my brokenness has healed a bit I am still working on the sad part.  I will get there by taking one day at a time and recognizing all of the amazing parts of my life daily.  That is all we have and to be quite honest it is just enough for me right now.  So I am on to celebrating my days and continuing to take care of myself.

May you recognize your blessings and find the capability to cherish each day just for what it is……another great day!!

October 22, 2022

Dear Friends,

Yesterday Mara returned to Bradenton after 9 weeks in Houston, TX where she could participate in a rigorous clinical trial. Though her pain continued, she felt that this treatment would work. The day before she left Houston, she learned the results of her scans.

She texted, “I feel broken. I just left the doctor’s office (at MD Anderson). The trial did not work and everything has grown with some additional lesions. I’m sooooo glad I am headed home to be with my family. I will consider all that has happened these last 9 weeks, cry, and then stand up knowing that I am still so blessed.”

Home now with her beloved family, Mara said, “Nothing fills my heart more than having my family together. Although my journey continues and the conversation with my children broke me more open than I have ever felt, I know that love will be stronger than any diagnosis or fight I ever have.

I am standing up.

I am moving forward, and I am embracing love every step of the way.

We are all processing and moving forward with accepting the reality of my passing and still being hopeful I will have many more days…they have made up one more chemo concoction that I will try for 2 rounds…guessing I will start in a week or so…Keith and I are trying to go away for 3 nights together next week to have that time together while I still feel good…one day at a time.”

Mara ended with her love and gratitude to all of you who have supported and cared for her in so many ways.

As you can see, we have not yet reached our fundraising goal. Mara is not asking for your support. We are. If you can, help us give Mara, Keith, and their children special time together however they dream it. Help us reach our goal of supporting this beautiful family.

Forever loving Mara,
Erin and Susan

Mara getting treatment at MD Anderson, Houston, TX

10/4/2022

The CRV pulled up and I recognized the license plate from the information on the app, I also saw a handicapped tag hanging from the rearview mirror.  I opened the door and he asked if I was Mara and I asked if he Al.  After loading a few bags of groceries into the car I climbed in. I quickly realized that he was a tiny man, his seat pulled close to the steering wheel, with skinny arms and barely seeing over the steering wheel, he seemed fragile but he also was secure and confident in his spot.  As usual lately (well most always) I talk to people, especially when I am in the back of their car, and they are driving me somewhere. I asked if he was having a good day and if it was busy and he answered with a shaky very high voice,

“Yes, I mean I guess I have been having a good day, I am just working.”

This led to a short discussion on work, which led to the contents of my grocery bag, which led to why I was in Houston…..you see where I am going with this right?

After Al found out I was there due to cancer and my participation in a clinical trial the vibe in the car changed.  In the beginning he was hesitant to converse but willing, now he was curious and almost excited to ask questions.  It took him awhile to get his words out, his voice shaky and it was if he couldn’t think of the right words to ask his questions.  I assured him that he could ask me anything and that I would answer.  And so he did …….

As he peppered me with strong questions, I began to think that I was digging deeper for answers than I ever had, and for a stranger.   His questions were not typical, but insightful and tough at times.  I almost felt myself wanting the ride to be over.  But I answered honestly and with detail, and it got me thinking.  I have no idea if this man had cancer, however it seemed as though he had a medical condition that had altered his life.  I began to think of all of the questions that I have been asked over the past 4 years, by family, friends, strangers, doctors…..the list goes on.

The questions no one ever wants to have the answers too, but I do.

The questions

How did you feel when you were told that you had a sickness that you might not recover from?

What does Cancer mean to you?

How has your life changed since the day you heard the word Cancer?

How do you hold on to hope?

What do you do to stay alive?

What are the best parts of your life now?

What has sickness taught you about living?

How do you walk around and see everyone living their healthy life and not feel anger?

Do you ever pretend you aren’t sick?

What has been the worst part of your sickness so far?

What has been the best part of your sickness so far?

What is your definition of life?

How do you eat with so many organs gone?

How do you survive not being with your family?

What if the trial doesn’t work?

What if the trial does work?

How long will you fight?

Do you ever want to just give up?

What do you look forward to?

What part of your past life are you glad you lost?

How do you stay sane?

What does your body feel like when you wake up?

How do you ask for help?

When you die, what do you want people to remember?

Do you ever ask yourself why?

When you can’t function and you are lying in bed what occupies your mind?

These are the questions that I remember……I think…..some may not be the exact wording….but they are close in context.  The questions kept coming all the way until we pulled into my little apartment complex’s driveway. He thanked me, I told him to make it a great day and grabbed my bags and off he drove.

At that moment I knew for certain that god puts people in your life to challenge, teach and show you things that you never thought of.

Thank you Al.

10/12/22

The answers

As I struggled to answer his questions with short and accurate answers, I also struggled to hold on to the words just enough so that I did not forget.  You see my memory is not what it used to be but my feelings are bigger than ever.  It is strange feeling really,  like someone has peeled back your skin so your nerve endings are left open to the elements.  Sometimes I don’t want to feel so strongly so I work at just feeling “normal” whatever that means.  But the questions had me feeling big feelings and wondering if I would recover.

I would be lying if I told you that all of my answers came rolling off of my tongue, some of them took time and others were easy.  Either way they all got me thinking.  With the end of my 2 month cycle coming up next week and 2 days full of testing and scans approaching I find myself asking myself 2 of the questions over and over.

What if the trial didn’t work?  What if the trial did work?

Next week I will know the scientific answer to those 2 questions.  And the answer will lead to more questions and more decisions.

Here is what I know.

I am feeling pretty good, I am walking as much as I can and I have gained 2 or so pounds.  I still have pain, but it is managed with the fentanyl patch for about 48 hours at a time, the last 24 hours that I wear it are a bit more difficult with the pain poking its head through the drug but I can deal with it.  I have a lump on my upper right arm that was attributed to, at first my covid shot, then an absorption cyst from my insulin pod, however now it has grown and is tender so that will be tested next week.  Side note – Sarcoma is common in extremities.  I am tired very easily and am taking long naps in the afternoon to which I wake up tired again.  All that being said I am, like I said, feeling pretty good.

Currently my brain is in the realm of processing the fear of the answer to the questions ……

What if the trial worked?

What if the trial did not work?

I am bracing for the “it did not work” answer.  But then I switch to my positive self and look at the fact that I have gotten stronger and have put on weight and I correct myself by saying “of course it is working”.  Either way it will be an answer filled with emotion and feelings, fear and relief and then it will be followed with the joy of my going home for a long weekend on the 20^th.  You see I know if we get the answer that it has not worked, I will want to be home like that second, and if I get the news that it is working that I will want to be home that second as well so my mom and I fly home on Thursday.  Over the weekend Keith and I will process whatever the news is and begin to move forward one way or another.  Until then I will enjoy my days to the fullest, I will continue to be grateful for all that I have been blessed with and I will work on processing my fear and feelings.  I do know one thing when I wake up in the morning my body is stiff and in pain but my mind is clear and my heart full of love for being given the gift of one more day to spend in the world.

Make it a great one ……

9/19/22

The days have come and gone and so have so many wonderful people. I cannot believe that I have almost been here one month. My visitors have been friends and family that I feel so honored to share time with. They have spoiled me and taken care of me when I am not feeling well and played with me when I am up for it. Our conversations have sustained me when my heart is longing for my family. Their love has once again lifted me up so I can continue to rise to the occasion of this part of my journey.

I have been reflecting on this part of my journey a lot lately. It's been long and kind of like a roller coaster, however, this part is forcing me to really dig deep and make sure that I am recognizing how to take care of myself, how to move forward with the unknown, and how to continue to balance and accept a life of ups and downs. I have written a lot, and lots of people share that I am inspirational, or that I have helped them in so many ways and I am so grateful. But I also must recognize that this is hard. It is hard to sit by yourself and look at the life you have built, mostly because, I think, we are not kind to ourselves. So, my goal is to let go of the “what ifs” and “I should haves” and accept where I am right now. As I do that, I begin to shift to - where am I going? And what is next? These for me (and likely everyone) are the hard questions because I don’t really know what is next. (Some pretend to know what is next because they planned it.) So, I noticed that what I'm doing is letting that be my excuse. I have let the unknown of what is next stop me from trying new things, stepping outside of my box, or embracing what I have been thinking of trying. So, in the next few weeks I am going to put more attention on the things that I am avoiding, or just not trying. Who knows what is next in life?

In all of the unknowns…..one thing I know is that I have decided that this treatment is working. It is healing me and my tumors are shrinking. That's what I say when people ask me how it is going. Those healing thoughts are my daily prayers. These prayers are what I am asking the universe and god to grant me. I am feeling stronger and healthier, and although my body is battered from all the ongoing treatments, all in all, I am feeling better and that is what I will focus on.

So here I go…….out into the world letting go of the what ifs and just focusing on the present. I will use my days to heal and push myself to learn more about me and how I want to move forward. I will recognize my fears and work hard at letting go of things that don’t serve me.

Cancer is an awakening of the soul of some sort. Through challenges and hard times I realize my potential and rise above what I may have ever thought for myself. I think this is true for you, too.

My hope is that you don’t have to endure cancer to recognize your gifts, that trauma doesn’t find its way into your heart or home to push you outside your comfort zone. My hope is that you can learn from mistakes, recognize regrets, and turn life into something that you have always been reaching for …..

Make it a GREAT day!!

9/6/22

The door closed and it was all I could do to not crumble onto the floor and sob. I caught myself and made it to my bed where I spent the afternoon processing my world and how it really is. I have written so much about my family and the importance they play in my life but all of those times I have been around them, living in the same home as them, seeing them, hearing them, feeling them daily. So, this writing is different.

The mix of feelings tears me down and then lifts me up, bringing me nothing but sorrow but then the gratitude creeps in. I cannot explain it and I will not try to do so. All I can tell you is that it is not easy. The past few days have been a rollercoaster of emotions and feelings. I am crying at the drop of a hat and I also am smiling and laughing daily. Thank goodness for my amazing weekend.

Keith and Ale flew in Thursday night (late) and I could not contain my excitement. I had the whole weekend with my boys and sleep was not even an option. I was sad because our daughter Kiara was unable to come, but I also knew that she was where she needed to be at the time. Ale texted me when he landed and then called while they picked up the car, drove to the condo, and while in the elevator. I met them in the hallway with lots of hugs and love. I was full of happiness.

The next few days were spent exploring Houston in the mornings, mostly going to sneaker stores so Ale could peruse all of the city’s best spots (there are a lot let me tell you). Our afternoons were spent resting and hanging out. Thankfully on Friday and Saturday I felt good enough to go to a soccer game (shocker right?) and for evening walks in Rice Village which proved to be hilarious and full of laughs as we played rhyming games and made up the life stories of individuals we saw. Family, the ease of time, flowing together with nothing but love. I was in heaven.

Slowly the reality of Monday slipped into view and I knew that they would be headed back to our home. I knew it would be hard but never expected it to take me down by the knees. But it has. Every time I think I have recovered, I feel as though I can’t breathe again but I am getting there….continuing to take one day at a time.

This morning I got up early and Ubered (is that a word?) to the hospital for my blood work. I decided to walk home the long way and with every step and breath, I prepared myself for yet another treatment later today. I have to say I am weathering the treatments well, but they are exhausting. After making a yummy breakfast I started packing my lunch for the day at the hospital. Never go without a few key things …… warm clothing, water, and snacks. My hope is that my appointment goes well, that the nurse gives me something to kick the migraine that I have had since Friday - I did not let it ruin our weekend) out the door, and that my treatment is easy and quick. I also know that I will accept whatever it is that comes my way even if it is not what I am hoping for.

Tomorrow night my sister, Giovannina, will be here and I am so looking forward to being with her. Her energy and love will fill me up and the fact that we will have a blast together is a bonus.

Life is funny. I wrestle with how things can be so hard yet so wonderful at the same time. My mind can go to dark places when I wake up in the middle of the night with extreme pain, but then I remind myself that I am not my mind. So I breathe and find peace in the stillness.

I hope that all of your days are full of love and laughter, and when things do get hard that you remember that you can still be okay!

Make it a great one!

Photos, Mara, Keith and Ale visited Mara last weekend.

9/3/22

The ebb and flow of Houston has taken place and I am finally feeling somewhat settled.  You can say that there is a peace to being here for me right now, although it is hard it is also necessary.  Of course, this weekend is a bit easier because Ale and Keith are here and it feels sooooo good.  My days are typically filled with uber rides back and forth to the hospital for appointments, blood work and more appointments but I actually have a few days off so it is even better with my family here.  We are all missing Kiara but we are face timing her a lot!!

Houston is a BIG city with lots of people and lots of things to do, one thing that I will say is that this city has amazing diversity and the worst roads I have ever experienced!  When Keith is here, his efforts to dodge potholes is failing, but nevertheless it is a fun game to play!  This weekend we are hitting all the sneaker stores (Ale has been saving up), doing the Houston Aquarium and the boys will go watch a soccer game. Tomorrow, I have treatment (yes on a Sunday) so it will be nice to have them with me as well.  I will be exhausted but it is all worth it to hang with my boys.

When they go on Monday, I will continue working on getting my body stronger so that I can explore a little bit, but for now my world is just taking care of myself and lots of resting.  I spend my free time logging on to the Integrative Cancer Care classes at MDA and have spent time healing with music, art, and yoga.  I drink my kombucha out of wine glasses and light a candle in the evenings and usually watch some brainless tv.  I write, listen to music and move as much as possible.  It is weird living alone, things are right where I leave them, the condo is clean and I only have to do laundry once a week if I want to.  As nice as that all sounds my heart is longing for home.  I miss my family, my dog, my bed and my world, but I am determined to make the best of this time. I am blessed with visitors of family and friends, and I have become to look at their visits as little vacations with all of my favorite   people which makes me happy.

Trisha was here and has me started on a project to send her pictures of our family over the years, this has prompted me to look back and enjoy all of the memories we have made together.  Of course, just the act of searching for pictures and going through them has brought me joy.

So, the days will go on, the treatments will continue and I will make my days great. I am so grateful for all of the love, support, prayers and thoughts that are continuously flowing my way…..thank you thank you thank you….Make it a GREAT day!!

August 18, 2022

Over the past 4 years I have had to shift gears ..... a lot! I feel I have done well and embraced each challenge head on. From the beginning, (literally the first appointment) - I along with Keith and my family have asked about clinical trials. The development in the medical field is constant and the research that is going on is amazing so we asked over and over and over. The first place I asked, well I was met with their story that I only had months to live and that there were no trials that would help. Needless to say, I never went back to this place.

Brian (my local favorite doctor and friend) has been an advocate for finding and recommending me for trials. He constantly looks for them. MD Anderson has listened to our requests for trials and has now found one that they feel may be beneficial. So after 4 years we find ourselves changing our lives (again) and getting ready to embrace a new normal. Shifting gears.

Shifting gears has become somewhat normal to me, but also very exhausting. My pain has thankfully leveled off. I believe that most of that is because I changed my mindset - reminding myself that every day is a new day and that in our world gears shift quickly. For me lately it has been the pain level, so I embraced the new pain, sat with it and reminded it that it has no control over me. I am stronger and more determined than a little bit (or a lot) of pain. I shifted gears. I was also given a fentanyl patch, which I am trying but the headaches and other side effects that I will spare you details of have me wary of continuing. We shall see.

So after seeing Kiara head back to FSU and move into her own apartment, dropping Alessandro off for his first day of sophomore year, and kissing Keith as he heads out to continue shaping the lives of soccer players, I begin to shift gears for our lives and the change that is happening and all that we hope for. I have collected every document needed, refilled all of my medications, began to make a list of things that I will need when I get to Houston and charted out our appointments for the first week which starts the 22nd.

The donations over the past 4 years have always blown me away, but the fact that our community continues to help support us is humbling. The funds have covered flights, rental cars, hotel stays, deductibles, genetic testing and more expenses not covered by insurance, prescriptions not covered, supplements, alternative medical care, massages that help me move and so much more. And now you are all helping me to have the chance to once again catch a break and give me more time.

So I say......THANK YOU!!

As I shift gears again I do not know what is next, but like I have said so many times, none of us know what is next. I woke up this morning with my mind spinning with things I needed to get done and things I want to get done, and then I reminded myself that I have been given this day and it is mine to shape and mold...

And yes, I will get all of my things done but I will also walk and sit and enjoy this blessing regardless of what gear I am in.

Keith and I head to Houston on Monday morning and Monday late afternoon the testing begins. The first week will be 4 ten hour days filled with biopsies, scans, EKG's and so on and so on ....

I will be hungry from all the fasting and tired from all the poking and prodding but I will hold gratitude in my heart.

I am grateful for this day
I am grateful for my life
I am grateful for my family
I am grateful for my community
I am grateful for research
I am grateful for the sunshine
I am grateful for the breath I take
I am grateful for birds singing
I am grateful for feeling love and being loved

Here is to staying in the gear that you embrace and when you need to shift gears do it with gratitude in your heart, think of it like a little bit of WD-40. It makes the shifting a bit easier!

Make it a GREAT day!!

Dear Friends of Mara,

Since 2018 you have helped Mara offset medical-related expenses through her continuous treatment for Leiomyosarcoma. On behalf of her, we thank you so much for your generosity.

It is with respect and gentleness that we are here again humbly asking for your support.

Mara is in serious pain from the growth of cancer in her lungs and liver. The latest update is there is a clinical trial that is a very good cell match, and will bring her relief and slow the growth of tumors. There is big optimism that this trial will work!

We want Mara and Keith to put their energy into a positive outcome of this treatment. To help alleviate the financial stress that comes with Mara living in Houston for the next 10 weeks, we are hoping to crowdsource $25,000.

Donations at GoFundMe will go directly into Mara & Keith’s bank account to help them pay for her lodging expenses as she settles close to the hospital, nourishing food during her stay, and travel expenses for Keith and their children, Kiara and Ale, to visit her as she continues her fight. Your donation, no matter the amount, will help reduce the constant financial worry associated with this lengthy treatment.

If it works for you to help, please share this. Again, any amount is appreciated.

With love for Mara, sincerely--

Erin Purdy, Sara Bacchus, and Susan Barrett

8/6.7.8/22

WOW…..I thought the pain was bad last week. Well it has just kicked it up to a new level that I am not enjoying or dealing with very well.

People have asked me what it is that is hurting.  That is a loaded question because pain moves and morphs and changes. My pain is all in my abdomen area - it is deep in the organs (liver and lungs) and it is piercing.  Imagine an ice pick frozen hard plunged into your organ (right through the gap between your last 2 ribs) and remaining there. Anytime I take a deep breath, yawn, hiccup, sneeze or cough the pain sears through my whole abdominal area.

For a few days it was just me and my pain doing a dance, me trying to accept it and remember that I had some tools to deal with it, but soon I buckled to upping my dosage of oxy, which on one hand was good because I slept, but then my body began to reject the oxy. Nausea set in and the puking started. That my friends was another new level of pain.  Thankfully, I stopped the oxy and went back to relying on other ways to get some relief and when the sun rose this morning my nausea was gone and I was hungry. Pretty good for someone who has not kept anything down for 48 hours.

The timing of the sickness and pain could not be worse as Kiara was heading back to Tallahassee yesterday. She struggled and we cried a lot together. I promised her that I would be honest with her and let her know if I needed to go to the hospital or what is happening next.  I could see her inner battle as she was petrified to leave me and not be here, but also excited to get back to life at FSU. She left with some big hugs and a message in her heart…..this is what I tell my children…..over and over sometimes.  This is my journey and although it affects us all I don’t want it to stop their lives, their dreams, and their hopes. I want them to push themselves to do whatever it is that they want and know that I am always with them in their hearts.

Seeing my family struggle when I am in so much pain and hurting is difficult, but they are amazing and do such a good job at helping me function. This is not an easy journey.

To help myself, I reached out to a friend who came and just sat and listened to my fears. She just held my hand while I cried and we prayed together. I visited with another friend who meditated with me, and yet another who just sat while I sobbed.

My community has risen up again to help with meals and donations and my gratitude will never express how thankful we all are.

I am continuing to live with my circumstances, and I will make the most of them, even on the extremely tough days. Kiara moves into her college apartment on the 15^th and if my pain is in check I will be there to sit and watch her and take her grocery shopping and to hug and kiss her over and over. I am scheduled to go to Houston on the 22^nd and hoping that Keith can come and be with me that first week.

Until then we take it one day at a time over here. The days are slow, with lots of sleeping.  Thankfully for Keith the EPL has kicked off and he is totally happy to be here for everything I need while tuned in to a game!

When my pain spikes and I feel like crap, my monkey mind or mind chatter begins to pull me in all different directions - none of them are good. I acknowledge the monkey and tell it to go play somewhere else …… I will continue to work hard to keep my mind strong and confident. When I am hit with tough days I have so many people I can reach out to help me over the hump ….. for that I am more than grateful.  This painful, beautiful, sad and unfair life is also so full of grace that I am warmed with the love.

Thank you Thank you Thank you

Make it a great day!

7/25/22

It has been a bit since I have written and to be honest, I have sat down at my computer to spill my words a few times to no avail.  Maybe I did not want to put the information on paper, or maybe I was not in the writing mood. Whatever the reason the days have passed and I am here now.

Houston was a whirlwind, unfortunately, due to the craziness of travel these days my dear friend ended up spending the day in Detroit versus running around the hospital with me, but her spirit was holding me and her love warmed me when I was chilly and nervous.  You see someone you need is always present in some way even if they are not standing next to you, we all know it, we just have to give ourselves permission to feel them.  The day was packed with lots of news and lots of handing over my blood.  The news was both challenging and hopeful at the same time.

But first a story ……

The elevator was empty, and I leaned against the back wall. A young woman stepped in barely holding herself together.  Her eyes were welled with tears and her hands shook.  She was alone.  She quietly stuck herself in the other corner of the elevator and shifted her eyes to the floor.  I tried to catch her eye to lend her a smile but like I said she was holding it together….. been there done that.

While the elevator approached the 2^nd floor I said,

“Are you ready for a great day?”

You see it is all about perspective and when you are in the thick of it most of the time your perspective is not all flowers and butterflies. She glanced up and tried to smile.

“Started off hard I am guessing,” I said.

She quickly explained that she had to walk through the children’s floor to find where she was going….she was lost (again been there done that) and that she was looking for the CT scanning area.  The elevator stopped and we both started to get out….I walked her to the CT area and told her to have a good day and that I would be there at 4 pm for my scan.  I had about an hour before I had to be at my next appointment, so I dashed back to the hotel, got my bags from the holding area and checked into my room (another long story), grabbed more water and headed back to the CT area.  I figured I would go and help her in any way that I could.  She was sitting in a corner her head buried in her phone.  I sat down next to her and said

“Hey …. How did check-in go?”

She looked up and her face lit up and she began to smile.

“I was just thinking about how nice you were and how you changed my whole day by just saying hello and getting me here!”. She said

We sat and talked for about 30 min, she is battling a Sarcoma as well and was there for her 3-month scan.  She is young and a momma to young kiddos.  She asked questions and we exchanged numbers ….. she is a juicing expert and shared some of her tips.  Clearly, I need a good juicer!!

My time was up and we said our goodbyes as I headed to my next appointment.  She held my hand and once again told me how grateful she was that I spoke up in the elevator and then took the time to come to the CT area and chat with her.  I thanked her for her lending me an ear so I could talk (you know me) and that I was going to try some of her juicing tips…..people passing in time ….. we all have a story, lives, challenges, and heartaches.  All it takes is a smile and a kind word to possibly help someone get through their day.  I have always known this, and I am good at talking so I do it often, but when I see the impact so clearly it once again reminds me that it is so important.

Walking to the CRT (Clinical Research Trail) office was short and I did not get lost or have to walk by the children’s floor so that was good.  My appointment consisted of 4 individuals.  The nurse, PA, Coordinator, and Dr. all told me the same thing…. That I looked great, which is nice to hear.  MD Anderson is the largest research hospital in the world and they are constantly running trials, currently, there is a trial that attacks the YA 1 protein in cancer cells.  After testing my tumor tissue, they determined that 95% of my cells contain the YA 1 protein and that I am a good candidate for this trial.  The details were vast, the schedule was discussed, the expenses were laid out and the reality of me having to live in Houston for 2 months began to settle in.  I explained that I would gather all of the needed info and speak with my family and let them know.  On one hand, it should be a very easy decision, right?? I have the protein; they have a potential blocker which would decrease or stop the growth …. Boom all set.  But my goal on this journey is one thing …. To WIN and prolong my life.  But it is hard to think of prolonging my life in another place than my family considering it is myself and my family that I want to live for ???? make sense???

After meeting with my oncologist and hearing that he and Brian (my doc here) are all for it and speaking with my family we have decided to give it a shot.  My scans showed more growth in my liver and my pain has increased greatly.  I am sure that the back-to-back travel and stress all is contributing to my pain but hurting is not my forte.  Last week Keith wanted to take me to the hospital, and I refused, I reached out to Brian and he had me in asap.  More scans ….. they were afraid that I had a blood clot that was impacting my lungs.  Thankfully the scans did not show any clots and I am settling with the fact that this new increase of pain is just what it is.  You see pain shifts my whole day and I am guessing I am not the only one.  My walks have gotten shorter and less frequent, and I am in bed a lot more, that being said when I am up I am very productive!!!  But still, we move forward….

I am guessing that this week I will get more info from the coordinator and that we will start to get a firm date on the calendar for me to be there.  Until then I take one day at a time and enjoy the days I have here with my family.  I can not imagine missing Alessandro’s first day or Kiara’s moving into her own apartment, but I will do what I need to do.

My goal right now is to continue to take care of myself, learn more about juicing and continue to love the life I have been gifted with.  It all can change in a second when you least expect it.  So enjoy, explore, laugh and love ……

Make it a great day!

7/10/22

Well, my travels have ended, and I am writing from my home.  As much as I miss waking up and sitting on the balcony in Chiavari, sitting on my chair in my home after sleeping in my bed is pretty great too.

The return home was smooth and uneventful, which Alessandro and I were grateful for considering all the travel mishaps that we had been hearing about.  My saving grace is the wheelchair!  Navigating travel, and walking the airports all while carrying a backpack is not in my wheelhouse anymore.  Just walking alone wipes me out, and after traveling for 15 hours I must embrace that I cannot do it.   However, I will say it is hard to sit in a wheelchair and let someone push you through the airport.  Maybe it is pride? Or truthfully a bit of embarrassment? Who knows but it is there, and I feel it as I am wheeled around?  Regardless of what it is, I could not do it any other way.  So I am grateful for the helpers in the airports, the people who tolerate the frustration of individuals in long lines, the ones who stop to help those who look lost, the ticket agents that are all doing their best and the people who push the ones like me in the wheelchairs.  My driver knew JFK like the back of his hand and carefully navigated the crazy-packed airport with ease and safety. He helped with our bags, made sure Alessandro was always close, and got us to our gate with time to spare. So, I am grateful to the wheelchair, and the driver. Although our trip was long and exhausting, we landed in Tampa and walked into the arms of my honey and the past few days have been just about sleeping, sleeping, sleeping!

When I have been awake, I have been working on shifting my mindset. The Italian mindset was and is ingrained in my brain. Not that I want that to end, but as a friend recently said when I mentioned going back to reality……Reality bites! Instead of walking the market, I am waking early with my friend. Instead of floating in the Mediterranean, I am floating in my pool and instead of reading bits of books (its hard for me to read more than a chapter, if that, at a time).

I am looking over my notes from my last appointments and beginning to write my questions down for my next appointments.  The last few days in Chiavari I began to have pain, not major or horrible, but it s there. I began to think that the reality of returning to my life was beginning to sit in my body. Of course, the travel increased the pain, but I am still pushing through……this too will pass. I re-visit my intentions and recognize and validate my fears and anxiousness - this is what I do.  Take one day at a time Mara.

Thankfully my heart, body, and soul are still vibrating from the summer fun and I know that whatever comes next will be just what it is.  I leave on Wednesday to return to Houston to gather more information on the next steps.  I will go with an open mind and heart and a dear friend by my side.  Wednesday will be long and exhausting.  I land at 11:30, and my appointments are at 1:00,  2:00, 3:00 and 4:00 …… lasting until about 7:00 I am guessing. The next 2 days will be more testing and meeting with doctors…..One day at a time Mara…..

And so, time passes, lives press on and all of the emotions continue.  I hope that you all have had and continue to have summer fun. Let it fill you up till the joy spills over and your perma grin is permanent…..Make it a great day!

Image: Mara with her mom and sisters

6/25/22

Sono Italiana ....

The days have come and gone, and I have been living the Italian life for the past 2 weeks.  Kiara and Keith returned to the states a few days ago and I miss them like crazy but I am also excited to have some more time with Alessandro.  Our days are not busy with sightseeing and visiting monuments, although I am in awe of the people that I meet that do the country in 10 days???  No….our days are filled with walking the market, eating, lying on the hot rocks and then eating again (I am trying my best to gain weight!).  Alessandro’s typical 15 yr old, annoyed teenager persona has not completely left the building but I can crack him once in awhile. We are looking forward to visiting Genoa, a cool city that is only a short train trip away, and if he is lucky a trip to Monza with his aunt and uncle might be in the cards too!  All of that topped off with gelato (at least twice daily) and lots of doing nothing makes for a great vacation.

The Italian lifestyle is like no other, slow and deliberate and always collaborative. There is a sense of everyone watching out for each other that is stronger than I can describe. From the children on the beach, to the elderly in the piazza, the community stands together and lifts each other up.  It really is something to see, nothing that you would notice in a short trip or by staying in a place for only a few days.  You must observe and live the lifestyle to fully understand.  I guess I learned this as a young child.  My Nona would sit on the bench Lungo Mare (seaside) and watch the world go by, back then as a child it was not the easiest thing to do when she called you to sit next to her, only because as a child all I wanted to do was run and play and swim.  As I began to grow a bit older slowly, I began to see what she saw.  The world passing by is an amazing thing, in my teens and young adult years I remember her sitting in her chair and watching or being in the kitchen working.  When you sat by her, her words were few but always meaningful and strong.  Her broken English and soft hands were a soft blanket that wrapped around you bringing peace and a feeling of the most unconditional love ever.  She was the epitome of the Italian lifestyle.  She moved slow but intentional, her words were kind but strong and clear when they needed to be and she seemed to always know what the people around her needed. To say I miss her would be an understatement, but I also feel her presence here almost every second. Especially when Alessandro woke up with a horrible stiff neck (like he didn’t move for almost 2 days!) I saw her soft face and heard her soft voice …… “never sleep with a fan on….”  There were many Italian sayings that I learned from my Nona and sleeping with a fan on was one of the most memorable. Of course, we love fans and therefore we have one in the kids’ room here, which just happened to be faced right at Alessandro’s bed, of course making him have the worst stiff neck ever. Alright, Nonna……the fan is no longer on.

So as my days continue, I strive to live the lifestyle, bask in the memory of my Nona, make new memories, and rest as much as possible.  Although I am feeling amazingly well, I am tired, so that means naps. Thanks to good friends here I have a great massage therapist who keeps my muscles from completely freezing up and a wonderful Acupuncturist who keeps my pain at bay for the time being. One day at a time, that is what we do.

I hope your days are filled with some of what the Italian lifestyle offers….kindness, good food, slow walking, and an unconditional acceptance of all people.

Ahhhh…la bella vita!

Oh yeah….Make it a great day and don’t sleep with the fan on!!

6/9/22

Over the past few years, I have put together a list in my head of things that I wanted to work hard to do again.  In the beginning, it was things such as just sitting or walking.  However, as I have gained strength and gotten myself to some sort of normal, I have added to the list of things that bring me joy and peace.  Things like sailing on Clear Lake, sitting on the balcony of my parents’ home in Chiavari, taking a deep breath in the mountain air of the Fulk Vu-Mor and just being with family.

When I pushed and got the OK to travel to Europe all I could be was excited and overjoyed.  We bought the tickets, made the plans, and set it in motion, but little by little the fear and doubt crept in.  A few weeks ago, I found myself feeling extremely nervous about traveling so far from home, my doctors, and MD Anderson.  I found myself thinking of all the things that could go wrong as I planned the trip of my dreams. My strength in the decision began to waver and I even began asking myself ….. What if?  I think I did this for almost a few days…which is unlike me.  Slowly as I began to look at the truth (not my fears) I reminded myself that there are doctors in Italy, even a world-renowned Sarcoma Center.  I armed myself with knowledge and the names of the hospitals and doctors that my MDA team recommended, filled prescriptions that I might need while there, and constantly reminded myself that this trip will be more than a trip, it will be healing and recharging.  Just what I need to tackle whatever comes next.  I prayed for strength, and it bubbled up within me.  Little by little the joy of the trip began to return to my blood.  My memories or walking Lungo Mare with my sisters filled my heart with joy, jumping on a train to nowhere with my kids made me smile and lying on the beach with my husband brought me peace.

So over the past few days, I have collected all of my medications and supplies, a list longer than I could share,  I have picked up little things for my Italian family to remind them of Florida,  I have collected my most recent scan info, blood work and file of all of my medical struggles, I have packed and planned and packed again.  And now it is time to go, ready or not.  Am I nervous maybe a little, am I excited ….. more than you can imagine.  I have been given the gift of life, and what is life if not to explore, grow and spread love??? I am feeling emotionally full of gratitude and physically exhausted but I am ready …..

My dear friend Grace shares this prayer with me whenever I see her as I walk in the morning.  I am thinking of it and hope that it puts a smile on your face today …

This is another day, O Lord

I know not what it will bring forth, but make me ready, Lord, for whatever it may be.  If I am to stand up…help me to stand bravely.  If I am to sit still…help me to sit quietly.  If I am to lie low…help me to do it patiently.  And if I am to do nothing…let me do it gallantly.  Make these words more than words, and give me the spirit of Jesus….Amen

So I will sit, stand, or just lie low and I will know that whatever the day has in store for me I will do with nothing but gratitude and grace in my heart.

Grazie per tutto!

Fa’ che sia una grande giornata!

Photo: selfie, Mara takes her smiling heart everywhere.

May 25, 2022

It runs down my whole torso.  From my breast bone to my pelvic bone.  I cover it well, however, to the naked eye you would really have to look for it (gotta love having the best surgeon). Now about 80% is a hernia that protrudes from my abdomen as if an alien is about to emerge. Seeing it against my way-too-skinny body is a sight! Thankfully it represents hope for me.

Scars. The written evidence on my body shows the slice that gave me more time. The slice that many doctors would not even talk about. The scar, although faint, I know it is there. The cut was deep. Through the layers of skin, the muscle, and deep into the abdomen. You can’t see the missing organs. The fact that the cut released ½ of my stomach, a pancreas, spleen, gall bladder, and of course the melon-sized tumor. All of that removed from the deep cut continues to amaze me. My scar is the witness to my struggle and my future all at the same time. Scars.

My tears flow and I mourn the life that I had BC (that is what I call it before cancer). I could think of a long list of things BC that my life included, but on the other hand, none are missed too much.  Maybe you forget things when you are faced with restructuring your life? Of course, my internal scars are raw and still healing although it has been years. I continue to work on healing them. Will they ever fade? I don’t know.

But then I feel lucky because I can recognize the gratitude of my life AC (after cancer diagnosis) and although my healing continues and my mourning is present daily, it by no means outweighs or blemishes the gift of my scars. My body does things I thought were not even possible, the scars are proof that I can embrace life and live it to the fullest. Scars. So much can be told by a scar if you let it speak to you and embrace what it means.

I mourn running with my kids. Too tired for that now. I miss traveling without fear that something may go wrong. I miss waking up and not taking pills 6 times a day (and they are big pills!) or having more than a week without a doctor’s appointment. My scar reminds me to stay in the minute, hour, or day. My scar teaches me that my life is a gift and for that I thank it.

Scars, a gift that too many have and don’t want, but something that many may wish for if it means more time to cherish. So, cherish the time I will.

I am almost to the point where I begin to count down the days till I travel across the pond as my father would call it. In my life I compartmentalize. Right now we are in the “finish school” compartment. Once the calendar turns to June, I will shift to the “get ready to travel” compartment. Travel has been so different for me over the past 3 years as the trips are mainly to Houston. This travel coming up is different. It is a family trip to a family home in a spot where I grew up spending as many summers as I could. This trip will look different as well. I will obtain extra insurance "just in case," connect with the Sarcoma center in Milan and hope that I don’t need them, I will feel every ache and pain as I pay close attention to my body to make sure that I am okay. I won’t be able to hike the Cinque Terre as I used to do, but a walk to the market will be nice. I won’t be able to make the long trip south to explore the country and see family, but short half-day explorations will be on my list. I won’t be able to eat some of the things that I grew up loving, and my late-night adventures with my sisters will be on the balcony rather than the streets. That all being said, I will soak up each moment. I will enjoy the beauty of Chiavari and my favorite places. I will dose more insulin so I can eat lots of gelato and enjoy the fresh mozzarella and melon. I will savor the time with my family, love on my husband as we walk the beach, show my children where I used to hang out, laugh with my sisters and revel in the fact that I am there again.

Although my scars are deep, I recognize that they have given me a gift of more time, more gifts, and more love. For some, time is stopped when you least expect it before a scar can even emerge to remind you of what a gift it is when we wake up each day.  My hope for today is that you can find the beauty in this day, this moment, and that you can recognize the scars (internal or external) that have gifted you more time.

Make it a great day!

Image: Mara's photograph, Gulf of Mexico

May 5, 2022

Thinking is an act of our mind. Thoughts come and go. Thoughts also mostly determine how we approach things, how we feel, how we react, and how we interact. I've done a lot of work and practice with my thoughts over the past years and I have come to a conclusion. The more aware I am of what I think, the more I am able to deal with things that I have no control over.

I was listening to a podcast.  One author was interviewing another author.  Don't ask me who, because with all of my thinking I can't remember much!! Anyways, this woman spent most of her life depressed, lonely, swept up in addictions and other sad and horrible things.  She was sleeping on the floor, because she believed that she was not worthy of a bed, and she woke up and saw herself in a different light. I am sure that the story is much more complex than I am making it sound but you get the idea. She had an epiphany or "aha" moment.  She began to think of herself as a worthy person, one who deserves joy and love and most importantly one who could think only amazing wonderful things. While I listened I thought to myself "how great that would be, to think wonderful things"  and I recognized that I really work hard on this already, so, I decided to work even harder on it. This was a few days before my mom and I departed for Houston.

As the plane lifted off the tarmac and headed for the sky I absorbed the view  I am obsessed with the sky, the clouds, and the different hues of white, grey, aqua, orange, blue, the list goes on. It is part of my daily joy, to take in the sky and its uniqueness. As a monk once said, it will never be the same again. The clouds were thick and the sun was dipping down into the gulf so the orange, pink and yellow rays kissed the horizon giving it a gradation of colors. I was excited, mom and I were on an adventure, I was thinking of it as a vacation. Unfortunately, we weren't going anywhere that exciting but we were together and having fun!

We touched down in Houston and grabbed our bags. A driver was already there ready to take us to the Rotary Hotel. We had stayed at this hotel after my surgery (which believe it or not was almost exactly 3 years prior). It is the easiest place to stay as it is connected to the hospital via a sky bridge and requires no rental car etc. When we got to the hotel I recognized again that I was excited to be back. I was not nervous or anxious but just glad that we were moving forward. I guess you could say a sense of peace came over me. There is something about that place - you see everyone has something in common. You are either a patient, supporting a patient, or a past patient supporting those still on the journey. So there is a softness to everyone because we all know what it is like to walk through this ongoing whatever you want to call it.

As we settled in the peace spread over me and I got even more excited to see my doctors face to face again after so long.

The next few days were filled with testing, poking, scanning, and more testing. I spent my early mornings getting up and walking the empty corridors to get my exercise and move my body. The only other people up moving were the doctors and the staff. How many people does MDA employ I wondered? Lots.....mom and I thought of all of the jobs that they produced for the city of Houston.

Scan day came and mom and I were off to the races. We walked slow and steady and took it one step at a time. My mother is good at slowing me down, she told me to walk ahead and she would catch up, but being by her side was what felt good. After reaching the scan room, checking in, enjoying my delicious cocktails, getting IVs placed and vitals taken they finally called my name.

As I got ready to scan (it's a whole process when you are diabetic) nervousness crept in and my thoughts began. I heard myself saying "last time youI had a scan you reacted to the injection" and "last time you scanned you were sick for 2 days" and on and on. I took some deep breaths and began to share with the technician about my reaction. He smiled and put his hand on my shoulder and said, "This scan is going to go great." He passed me an alcohol wipe, and told me to open it and sniff it a few times before entering the tube. I just said "ummmm OK" and thought to myself that I would give it a try and it would work.

I was prepped and ready. The lines were set up and I started to move into the tube, alcohol wipes open and sniffing complete. Just as I finished sniffing the automated man in the scan started instructing me how to breathe and when to hold my breath, so I followed suit but In the distance, I heard faint crying. At first I thought it might be me but I blinked my eyes and realized it was not. No, it wasn't me although I wish it would have been. It was a little girl, 6 years old, going through the same thing. I was but just on the other side of the wall.  She was scared and her mom was scared. She was saying over and over "momma I don't want to."

At that moment I thought of all of the children that I have loved over the years. Family, friends, students, etc, and thought to myself, please just let me do it for her and let her be ok. I wanted to explain to her that it would be over soon, that she was going to be ok, and that I wished I could make it all better. Of course, she was on the other side of the wall and talking to her was not possible so I began to fill my heart and mind with thoughts of peace and joy and sent them to this little child that was enduring the unimaginable.

At some point the crying subsided and my scan ended. I completely forgot about worrying about reacting or being sick. Was it the alcohol wipe? or the empathy? or the peace that I was sending? Who knows, but it was over and I was glad I felt ok.

When I exited the room I asked the tech how the little girl was. Of course, he can't give details, but he indicated that she did great with her scan and she was already done and out.  I felt relief and then some sadness that this was part of this child's experience at 6 years old.

Exhaustion set in quickly after a wonderful early dinner with my momma (that is what happens when you have to fast for so long).

When we got back to the room I think I was in my pajamas and in bed in less than 15 minutes. Sleep followed right after.

Early to bed usually means early to rise and the next day was no different. I woke and headed out for my walk, across the sky bridge around the park (which is inside), back down the hallway for a stop in the chapel and then up the elevator back to the long corridors that led back to the sky bridge and back to the room. I don't know how far I walk when I am there, I just walk until I am done.

My appointment in Sarcoma was at 9:30 and we were there early with bells on!  I was contacted to let me know that Dr. Patel was out due to medical reasons but that I would be meeting with Dr. Livingston, another Sarcoma specialist. At first, I was disappointed but then I thought to myself, hey this is good ....another set of eyes on my case! After vitals and answering a lot of questions the doctor came in and told me what I already knew. Votrient (chemo pill) was working to a point, but not as well as they would want it to work.

So what that means is that there is growth. He went over the scans and all of the measurements.

I heard the word "stable" and "not much growth" and I also heard the words "increased" and "new lesions."  Essentially, my lung lesions are stable and doing well. The lesions in my liver were not, however. Their growth was not huge. The main issue is there is another lesion in my liver as well.  All in all, I decided to take it as good news ...

What comes next?

This of course is always my first question. He happens to be on the research team and shared some clinical trials with Sarcoma and actually Leiomyosarcoma that are being held at MD Anderson. He recommended that I meet with the research team and get started. He also shared about the next chemo that they could try if I was not interested in a trial.

My mind was working, spinning and thinking, so I began to verbalize.

"OK - I am on board for clinical trials, they have been something that I ask about every time we have to change treatment. And I hear that you don't like the growth on the Votrient, however when I think of the last few treatments I have been on, the growth has been much more aggressive, and I have had not much stabilization in any of the lesions. That coupled with the fact that I can/am tolerating this drug to the best of my ability and the fact that I can take it with me and not have to go to the spa as often I am leaning towards staying on Votrient for another 3 months."

I looked him in the eyes.

"I know that anything we do moving forward is a crapshoot and I am focused on my quality of life and being with my family."  I continued by telling him that my parents were returning to their home in Italy in a few weeks and that my daughter Kiara will be there for a summer program.

Then I asked the question:

"I would like to go to Italy to be with my family while I am feeling well enough to do so.... What do you think?"

He looked right at me and said, "I think that is a great idea." He explained that his first goal is always quality of life and that he agreed with me regarding the treatment. He of course indicated that I will see more growth and that I need to continue to do the things that are helping me so much. The walking, the juicing, the meditation, prayer, massage, acupuncture, etc.

My body was trembling with gratitude. I was so ecstatic but also had one more question.

"Will me waiting until July hinder my ability to be a candidate in the trials that you were talking about?"

Of course, this was the determining factor.  If for some reason waiting would put me out of the running for a trial then my trip to Italy would not be a possibility. He told me "absolutely not....during this time we will set up appointments, gather tissue from biopsies, do more blood work and see what options of trails you will have. I will set up the appointments and let you know when you will need to be back!" I almost started crying right there.

I texted Brian and asked if I was crazy and he answered, "No....you are not"....I texted Keith and let him know that the doctor said yes .... of course, he was/is nervous (understandably so) but he also is excited as our family will be able to do something that we have loved for so long.

So there we go.....my family will be able to have time together in Italy and we will all be together, something I did not know would ever happen again.

I will return to MDA in July and have more tests, scans, etc., and start the process of entering into a clinical trial with hopes that it will give me even more great days on earth.

There is still a lot to process of course.  A clinical trial means that you live where it is and what that means is that I will have to leave my kids and husband for an extended period of time. But we will figure it out.  Processing this is not easy because I don't want to leave my family and my home for 3 ,6, 9 months?? So where I put my thoughts is how it will work and give me more time.

Moving forward I will continue to process. I will connect with the Sarcoma specialists in Milan (only an hour from our family's house in Chiavari) to have medical coverage there if needed. My dear friend, Kerrie, will find a massage therapist and acupuncturist so I can continue to take care of myself while there. I will revel in this world that I have in this particular moment and all of the moments to come. I will continue to be surprised by the immense amount of love that I experience daily and know that this is part of my healing as well. I know that it will get better as we move forward. I find myself saying "take one day at a time" or "it could be worse" or "make it a great day." All of these thoughts come together in processing this news and how I will move forward.

So there it is. Another day in the life of Mara.  Another day trying to figure out how to live in this moment and move forward in the best way possible. Another day spent loving life.  No matter what comes your way, know that you can do it. I am still amazed by what we can do when we have faith in our minds and our prayers. My prayer now is "help me heal and grant me health. I know that I will not be dealing with this for years to come - this is my hope, this is my dream. So enjoy the moment."

I am off to start the search for plane tickets for the summer.  If you have any airline miles you want to throw my way let me know!!

Make it a GREAT day!!

4.21.22

Maple syrup

I felt it spread through my body… Like when you pour maple syrup on pancakes and it slowly covers the whole pancake and drips down the side. I didn’t know what it was at first so I tried to pin down where the feeling started. I felt like it started in my gut but as I sat with it longer I think maybe it was more in my chest area between my ribs maybe at my breast bone?

It spread over me after I read a text ….a text that stated that there was a 4.3 cm solid mass that looks "suspicious." The feeling came fast like a dagger and I felt hot all over. The text was from Brian (oncologist) and he was sharing the info from the Ultrasound I had done yesterday.

I’ve been having a lot of pain on my right side right below my rib cage in my back. It kind of feels like an ice pick in my body and when I breathe it digs in. I don’t do pain well so I’ve been managing it with lots of Tylenol. When it didn’t subside, Brian decided to do an ultrasound of the area and of my right upper arm. I noticed a lump on my arm a bit ago and we have been watching it closely, so he decided to have the tech look at that as well. So when I read 4.3 solid mass …my mind went right to another tumor on my back. After some texts back and forth I realized he was talking about my arm….for some reason the syrup slid away and I could breathe again. I thought….oh my gosh thank goodness he’s talking about my arm. But then I was like wait a minute he’s talking about my arm!!

I tried to push the fear that was creeping in again away and started to shift my brain to think about positive things and then I reminded myself. No, it’s OK, just sit with it. So that is what I did while lying on my couch, and then the tears came.

It was a good cry that I needed and it helped me to reset my mind for my time at MD Anderson next week. My mom and I will travel there for scans and appointments. I’m weirdly excited to go back after so long, but also not looking forward to it at all. It will be great to connect with my doctors face to face after being on zoom for so long and my hopes are for a good report indicating that the oral pill is continuing to work. But of course I’m also bracing myself for the deep plunge that could come as well. Whatever happens is what it will be. I’m going to enjoy that my pain is not so strong today and that I can breathe deeply. I know that I will have so many people thinking of me next week and that all of that love will help me face whatever is next….

Make it a great day!

Cloud/sky image: Terry Barrett, photographer

3/25/22

There is nothing like having my sisters near me, a calm and warming feeling just settles in, and I feel like everything will be ok.  This morning at the crack of dawn Giovannina and Oriana got off the red-eye flight from Seattle to spend a few short days with me and I could not be happier.

I have written before about how when I am with my family it revives me and gives me strength whether it be my children, husband, parents, cousins, aunts, uncles, SISTERS, and friends that are as close as family.  The energy and understanding on top of comfort and the ability to feel it all are important for me.  In my world I find myself getting through my days and doing it to the best of my ability.  Sometimes, I am able to sit in my feelings, but as I have also written before, it is not easy.  So, this weekend will be a great reminder to feel whatever is coming my way, you see, my sisters can see through the “I’m good” or “everything is fine” and push me to dig deep to recognize and take care of the parts that I have pushed down.

You see, I am living a life that I never imagined or ever wanted in a way.  Yes, I am married to the best guy ever and we have 2 beautiful children, we love our community and home and have so many blessings. However, by now Keith and I had plans to be able to start thinking about retirement, remodeling bathrooms, traveling together, buying a second “vacation shack”, visiting our kids at college, taking care of our parents, playing pickle ball or golf or one of those “old people” games. Real-world is me being sick, Keith working harder, our kids seeing less of us because I am too tired sometimes, not traveling near as much as we ever imagined, Keith monitoring prescriptions, and me trying to stay on top of insurance and doctors. Our second shack is a distant thought and retirement is way far away…. when you don’t know what comes next you are for sure not buying another place or not working!

The things that I thought I would be able to do have been taken by exhaustion or illness, so I work at doing things that I can. These things make us feel like we have some sense of wonder, and thankfully just being together for us is just that, so then I sit with the fact that we are very lucky. Yes, this life is not the one I envisioned, or dreamt, or ever wished for.  I wasn’t sitting at my desk, at a job I love dreaming that I could not return for fear of catching something. I never thought I would be working with my colleagues, students and parents over Zoom. I always thought I would be at all of Alessandro’s soccer games but now can’t be in the sun so I watch the film and hear the play by play when he gets home. I never wanted this roller coaster as Keith calls it. The constant up and down of the unknown is exhausting but then again it is the most wonderful thing in the world as well.

I have been reading “Good Enough” by Kate Bowler (check it out) and working with this thought….so what now? How do I continue knowing that this is what it is, this is what my life consists of, and how do I fully embrace it?

I feel like I have embraced it and I feel like I am so incredibly grateful for what I have, but can I continue to be grateful for all that is to come? And the unknown of it all?  I am not sure, but it is my hope and what I will work towards- a pure acceptance of where I am, even though it is not what I wanted, for me or my family.

So I will spend this weekend with my sisters, laughing, walking and I am sure talking about things that I never dreamt of talking about or ever wanted to discuss at this point in my life.  With them, by my side, it will feel better.

I am so loved and supported by so many that I know that I will be okay, and I know that I will continue to embrace my moments, even the ones I never asked for or thought I would have to think of.

Here is to all of your dreams ….. may they all come true and when you have to shift, may you have the strength and grace to shift with them, embrace the moments you have. For us all….Make it a GREAT day!

Sending you all tons of LOVE today…..let it pour in!!

3/8/22

I realized in the last few days that my orchids have begun to pop again, which reminded me that another year has passed, which reminded me that we are in a new month, which reminded me that the days continue to move, and time continues on…. great days and days that seem almost impossible come and go.

I think quite a bit about time and what it means, and I work (sometimes it seems like constantly) at making sure that I recognize and have gratitude for the time that I am spending here. Sometimes it is easy and sometimes it seems like my mind won’t quit so I give it a break.  I guess staying in the moment of time that I am possessing is what I will always practice.  It is not as easy as stated, especially when the world is moving so rapidly all around us.  The input from phones, live streams, televisions, and electronics is constant and can feed the brain all kinds of messages, from healing podcasts to heart wrenching news of how just a short time has changed so much in the lives of those suffering.  So I continue……

Continue to breathe deeply, smile a lot, listen to the birds (this morning I counted 7!), ache when I need to, rest when I need to, embrace time with my family and friends and just be.  Like I said earlier…..it’s easy to say some days, but that is what I do.

I hope you are relishing the time that you have here and making the most of it….

Make it a GREAT day!

2/5/22

I am exhausted ……2022 is in full swing and I am not able to get ahead of it. It came in fast and has not stopped throwing blows at me yet, that being said I am trying. Trying to stay positive, trying to see my blessings, trying to smile and sit in the moment. Sometimes it is easier than others, but each moment seems impossible right now.

Last week was scan week and unfortunately, I had my first reaction to the poisonous dye that they inject into my body with each and every scan. I guess I should’ve seen it coming, I mean really, how much can a body tolerate? I am constantly amazed by what my body has been through and what it continues to give to me daily.

My port was accessed and the small talk with Norm was over, I was hooked up and ready to go. Every single time they do a scan they make you fill out a paper with a ton of questions that I have answered too many times to count. One of the questions is “How many scans have you had in the last 12 months?” I always guess because I am never sure, but I am thinking around 10? Give or take, this time I started thinking about how many scans that would mean that I have had over a 4-year period? If my 10 per year is right, then yes …… I am looking at 40 scans, 40 doses of the dye, 40 times my body was vulnerable to the radioactive rays and so on and so on.

This scan was the same as always until Norm let me know that he was injecting the dye. Typically, as I am sure I have shared before, I get a warm/hot feeling from the crown of my head to the tips of my toes. I am usually freezing so it warms me up and then it is gone. A few deep breaths and a few times holding my breath and then I am out and on my way. This time it was almost as immediate as other reactions that I have had. The room began to spin, I became very confused, and nausea flooded my body. All I could think was “Oh shit, I am going to throw up in my mask”. I tried to calm myself and took a few breaths. It was when I felt like I was passing out that I “tapped out” as I call it. I have never done it during a scan before, but it was that or pass out and throw up and choke and die in the tube. You can call me dramatic, but that is what I thought was going to happen.

As soon as I called out, Norm was next to me, coaching me through deep breaths and removing my mask. I let him know that something was not right and explained how I felt. He slowly let me know that some people have this every time….so I took another deep breath and told him to put me back in. He was a bit hesitant at first, said let’s just see how you feel, but all I wanted to do was to have it over and there was no way I was going to get off the table and have to do it all again another day!

I began to talk to myself, calm down, deep breaths, you can do this.

The scan only lasted about 3 more minutes so I knew I could get through it, and I did. Once the scan was over Norm walked me to the nurse’s station so that they could check me out. I am not a cut and dry easy case - it could be my enzymes or my blood sugar or just a plain old reaction, so I sat, and they “observed” me while I drank some apple juice and ate some crackers. All I wanted to do was to go home and lie down, so I did not stay long.

When I got home, I thought that I was feeling better but then the dizziness came rushing back. For the next 36 hours, I was sick as ever. I couldn’t walk on my own, food was not even a thought and all I wanted to do was sleep, so that is what I did. Finally, by the second day after the scan, I started to feel somewhat okay, just in time to meet with Brian to go over the scan results.

We met in the morning and as usual, as soon as he walked into the room, I could see the concern on his face. We don’t do small talk, so he handed me a copy of my scan results and we went over the highlights. Basically, some of my lesions have responded to the chemo and some have grown. If I had to give a percentage, I would say I was at 30/70, with 30% actually shrinking from the chemo. Brian said that he has seen this before but not often. He would like to keep me on the oral daily dosage for another 2 months and then scan again to see if we get more shrinkage, but of course, he recognized that there is a chance that we will also see more growth. The most concerning thing for him was that there is also a new spot in my retroperitoneal area, which is where my primary tumor was way back when. I listened and tried to process but all I could think was “okay….it’s not all bad” trying to focus on the positive. We discussed my reaction to the scan dye, and I went over the side effects that I am experiencing with this chemo. The one side effect that is really bothering me is my eyesight. It is one that comes with this chemo and stays around. Reading is almost impossible, and I am constantly seeing things, like bugs or large things in my peripheral vision. It is weird and strange but not painful, except that it does drive me crazy. Most of the time I know that the objects are not there, but occasionally I find myself jumping or being startled by whatever I see. Either way, it is strange.

So my journey continues, I will wait to hear from MD Anderson to see what their ideas are, and then we will make yet another decision as to how to move forward.

This brings me to the first sentence that I wrote…..I am exhausted. I am blaming it on the cold weather and grey skies, but I am tired.

Tired of being sick, tired of making life or death decisions, tired of pumping my body with crap that may or may not help, tired of having to work to be positive, tired of my feet being numb and not seeing clearly, tired of my mouth tasting like metal and not having an appetite, tired of having pain in my back and ribs, tired of the whole entire shit show that I have been dealt.

I don’t ask why, because I know there is no reason, just that this is my life.

So, I work hard at letting my exhaustion go, focusing on opening my heart and practicing my deep breathing. I focus my mind on the fact that I have so much to be grateful for and I recognize the double edge sword that I hold. So broken that this is happening to me, but so grateful that I was given another day.

I will continue to sit and listen to the birds and pray that I have helped others that are walking this journey called cancer with me. I ask for peace and that Keith and the kids will be okay when I am gone (years and years from now of course) and that I can continue to just be, in whatever capacity that may be for now. We humans are so focused on “doing” that we get lost in all we must do. I am guilty of this. I want to do everything I can while I can, so I am practicing how to just be. We are human “beings” and if we can figure out how to be right where we are we can see all that we are blessed with. Sometimes it is not easy, but as I practice every day I find that “being” is quite nice. So, I hope that you can let go of “doing” today and just be in the moment, whatever that means for you and yours.

Make it a great day my friends …..xoxo

1/5/22

The holidays have come and gone, Kiara has returned to college and all of the family who came to surround me has returned to their own lives and homes. I sit in my quiet house with a full heart and a plethora of memories to hold tight when the night steals my mind away. The existence of feelings is strong, and they vary. Feelings and I, in general, are sometimes very difficult, sometimes even impossible…. that being said they are ever-present, forever filling the void and so incredibly important.

At the beginning of my journey feelings would come and go and sometimes I would push…. push them away, push them to the side, push them out of my head….for some reason as I have traveled through what some would call “trauma” pushing was the only thing that I knew how to do in the beginning. It wasn’t something that I was trying to do or that my parents ever taught me, or even what I wanted to do, but it is what I did….days went on and on and the feelings continued to erupt and the push continued and then one day there was a slight realization. I began to pull. The pull was recognizing that no matter what I was pushing it was still going to be part of who I was. So, I began to embrace the push and started to figure out how I could accept it as part of myself. How to love my push enough to feel comfortable with pushing away when I want to and then being able to allow feelings in and pull them close when needed. You see everyone wants to talk about feelings when you are sick. They want to “be there for you,” they want to help and encourage you to talk, there are many who believe that keeping in the feelings will make things worse, and I am one of those people, but allowing feelings to flow freely is not an easy thing for most people. It takes time and practice and lots and lots of patience with yourself, which most people don’t have much of, to begin with. When I look around and I see families, friends, strangers, and loved ones dealing with different types of feelings I watch them push, sometimes I can even see the struggle in their eyes, and I long to help them to understand that this is part of the process of getting to know yourself and moving forward. But nothing I say can help them with the push, nothing I say can take that away, for we all have to experience the push, embrace the push and come to a realization that it is natural.

So, as you reflect on the holidays and the feelings they brought to your home remember that all of them are normal. I am sitting here working on embracing the feeling of fear as I put away our Christmas ornaments wondering if it will be the last time, the feeling of complete joy and peace when I lay on the couch and my children snuggled with me, tears of joy as I watched my family enjoy the Florida weather and each other, disappointment that I was not able to be as active as I wanted to be, frustration with having pain and pure happiness as I made more memories with my family. My feelings range daily and either way and that is just fine. Sometimes I push and that is just fine too. Some of you may say… “Oh no Mara, this isn’t natural, I don’t push, I look feeling right in the face.” But what I have known in my last 52 years is that each one of us has things that we would much rather push away. Yep, all of us, you, me, the random neighbor down the road, every single person, period. So embrace all of your feelings when you are ready and push when you need to, just know that whatever you do is OK.

Make it a great 2022!

2/14/21

So after a week of fighting with insurance and waiting for the arrival of my new chemo pill, yes they ship it to your house! I have started my first dose last night.  Yesterday I met with my favorite doc and once again he made me feel more comfortable with taking poison pills.  Don't ask me why I was a bit nervous, you would think that piping poison into your heart veins would be more nerve-wracking, but it was familiar I guess.  Taking 4 pills on an empty stomach for some reason felt weird.  My pain during the day has been rising so I kept that in my head, repeating to myself that this is going to work, this is going to stop the growth. This is what I am hoping for, at this point I will take anything.

So while I was feeling sorry for myself a few weeks ago I was scrolling through my LMS support group on FaceBook.  This is a fairly new thing for me, I don't post but I sure do search and read up on some things if I am struggling with them. There was a post that jumped out at me.  Mind you, I was just told that my liver and lung lesions have almost doubled in size and that yet another treatment did not work, so like I said I was feeling sorry for myself.  Keith was with me and he was down and out as well. We squeezed hands and I told him that it is not the worst thing in the world, he looked my way with a smirk and let me know that he was not in the mood for my positivity.   I looked at the FB page and there it was.  A woman stated that she was scared, she had just been diagnosed with LMS and she was preparing for her first round of the, what we call, Red Devil.  This is one of the first chemo's I had and the infusion was 8 hours a day for 4 days straight.  To say the least, it was no fun, so I felt for her, then I finished reading the post.....she was starting her first round and she was 24 weeks pregnant.  Yes, you read it right..... 24 weeks pregnant.  This put my situation in check real quick.  Like I said .... it is not the worst thing.

12/2/21

I have said it time and time again……we only have this moment.

I say it so much that sometimes I believe that I live with that in my heart. I mean I know that I work hard at appreciating every day and that I cherish the moments that I am given, but I am still working on fully accepting that we only have this moment, this day.

Every time I get news that a treatment has not worked it seems like it takes me some time to get back to living in the moment. I don't know if it is worry or fear, but my mind can take over and all of the things that "could" quickly arise. What I try hard to focus on is that I am still sitting here and still able to function.

Unfortunately, this time around I once again knew it was coming, the news that is.

My physical pain had increased and my body was telling me that something is not right. All of the time that I have walked this journey I have not had a lot of real pain. Yes, I have had surgery pain, pain from diabetes, pain with carrying around a huge tumor, but it all passed. It is interesting how I forget about it when it is gone.

This pain is cancer pain. The lesions in my liver have grown (more than I would like to say) and now my lungs are following suit. Not ideal for sure, but then again, it is not the worst thing either. My pain has increased and it is what gave me the indication that the news from my recent scans was not going to be positive. You see, after my last 24-hour infusion I did fluids as usual, however, during fluids, my neck and chest started swelling. Fluids were stopped and I was checked, poked and prodded.

When I returned for a follow up Brian looked at me and immediately said, "You're not feeling right are you?" -- a benefit of having a doctor who knows you very well. My scans were originally scheduled for Dec. 3rd, but he moved them up right away. After the scan, I met him in the hallway. "Don't text or call me the news," I said. Another benefit is that Brian communicates with me all of the time. "We will talk about the scans after Thanksgiving," I said. You see, I knew what they would say, and I wanted to enjoy Kiara being home, turkey, and my family. The news would be the same on Wednesday as it would be on the following Tuesday.

And low and behold I was right.

I explained the pain to him and he indicated that with the liver lesions at the size they were now I would begin to experience more pain. Keith squeezed my hand -- it is worse for him I think. Seeing me in pain is like someone is ripping away at him, especially because there is nothing he can do.

The next few days I processed and sat with the news. Emotional pain is sometimes worse than physical pain. I can take something for the physical pain, though I don't, but the emotional pain I have to work with and figure out. I will get there, because as I always say ...... it could be worse.

This was made quite clear to me when Keith and I woke to the news (right before Thanksgiving) that a dear friend had suddenly passed away at the age of 51. Scotty was one of the kindest souls I had the pleasure of knowing. We met Scotty while in Tampa and a friendship was born. When we moved to WVU Scotty came along. I spent many evenings talking about life, love and all the ups and downs with Scotty in West Virginia. He was the first person that took Kiara (then a rambunctious toddler) overnight so Keith and I could have a night away. He and Mike (another dear friend) gave us a night away at Nemacolin Resort and Spa, and it was glorious. I remember coming home to one happy toddler and 2 exhausted bachelors! I had the pleasure of watching Scotty marry the love of his life, become a dad, and pursue his passion of soccer. Although he moved far away to the land of the freezing, which I will never understand…brrrr). Scotty always gave me a call when he was in town for tournaments, or stopped by to see how I was holding up. Keith and Scotty could talk for hours over a good bottle of bourbon and the laughter always made me happy. So, to wake up to news that he passed away while mountain biking from a massive heart attack took my breath away, and still does. Nothing makes me cherish my moments more than realizing that Scotty will not be able to watch his children grow up or enjoy his life with Erica. It just took a second and he is gone and my heart breaks for the loss that I know his family is feeling.

So, I am cherishing my moments a little more lately. My chemo didn’t pan out the way we would have hoped so we are back at the drawing board. I will start a new oral chemo next week (I figure why not right?). Our goal right now is to stop the growth that has continued in my lesions. My moments continue, they might be hard and crappy at times, but they are moments and I will take them.

As we move into the holidays I am looking forward to family visiting and although I may be on the couch with no energy I will be able to watch the joy of the season one moment at a time. Wishing you all wonderful moments full of love, love and more love!!"

"11/5/21

The other morning I woke up early and began to write and write and write. It was one of those mornings when my thoughts were flowing and also happened to be the first day that I felt I could put sentences together after a long 5-6 days of total brain fog and exhaustion from the new chemo. I wrote about my struggles and how so many, including myself, have deemed this journey "a fight" or "a battle" when really all it is for me is "a life". I wrote about how amazing my life is and how full of love and support I feel. I cried as I wrote about each time I get another scan with more lesions how it chips away at my soul, but in a way brings me closer to a clear and wholehearted realization that this is just what it is. I wrote about how I am leaning into the fact that my God loves me more than anything, and I will be ok. I wrote about how some would say "God doesn't give you something you can't handle" and how I disagree.....you see I don't believe any god would wish suffering on any human being and I don't believe this is handed down by God. I believe that we are lifted up by our God and given strength. I wrote about how some may agree with me and others may not and how all of that is ok, and I wondered why we are living in a world when all of the sudden it is not ok to disagree, and if we do then it becomes an argument or disrespectful. I talked about how I strive to teach my children to disagree respectfully and with compassion for the other side of their thoughts. Yes, my writing the other morning was full of insight and interest. So then I did what I do every time I write, first I re-read it and sit with it for a while then I copy it and then paste it into my larger document. A message popped up on the screen and said something, I quickly pushed "ok" without fully reading what it said, and just as quickly as I pushed it I saw it all disappear. For about 15 minutes I tried to get my writing back, I pasted and hit undo, mind you I am not very technically savvy, either way, my writing was gone. I could not get it back. I felt sad and mad at myself for not reading the message fully and for hitting the "ok". You see it seems as though Word had a "default" and poof all was swooped away. I told Keith about it and he didn't have much to say that would help because he is way less computer savvy than I so then I closed my computer and walked away. For a few days, I thought of what I wrote, how much I loved reading it, and how it so clearly spoke my feelings. And then I let it go, it wasn't easy, in fact, I found it harder to let my writing go than some things that people would find way harder to let go of, but I did. This morning I woke up early, as usual, and began to write again. Just like that my thoughts flew through my fingertips, offering me therapy at the keyboard, which brought me to my gratitude for the day. Grateful for my fingers, for my typing class in high school, for my thoughts, for the ability to read and write, for my computer, for my open heart, and for the ability to share my thoughts. The things that I have to be grateful for always amaze me and always outnumber the things I could complain about. I hope that your Friday is full of GRATITUDE and JOY! Thank you all for being my virtual therapists, I would not be here today without you being willing to read what I write!

Make it a GREAT one!"

Photo: Mara's photo from FB where she writes "the sun will rise again tomorrow and god willing I will be able to make it a great day no matter what is thrown at me..."

10/22/21

At night thoughts fly through my mind at times……the one that was on repeat last night was “how much chemo do you think your body can take?” I don’t have the answer and actually, I doubt that anyone can answer that, not even the doctors. We are all different and drugs affect our bodies in different ways.

What I know is that I am a steady 128 pounds right now, I am walking about 3 miles per day, I drink about a gallon (or more) of water daily, I eat well and I am feeling pretty good. Yes, my back is in constant pain, I have horrible digestion, and I have random pains here and there, but all in all, I am good.

So I met with my MDA oncologist yesterday and he highly recommended returning to chemo sooooo.......that is what I decided to do, but of course the question floats out there….how much more can my body take?

I was really hoping for something besides chemo, anything actually. Maybe I just wanted my doctor to look at me (over zoom) and say, "Guess what? We have a new treatment that works great on Leiomyosarcoma (LMS) and I want you to start it right away.” Alas, that was not the case.

My hopes of liver-targeted therapy were once again put to the back burner. The lesions in the liver are in different lobes presenting more risk than my doctors are willing to take. Immunotherapy has not proven to work with LMS. Doing another trial would be taking a risk of it not working (again) and the lesions growing more. So, the drawing board has taken me back to chemotherapy.

My schedule is yet to be determined but the regimen is the same - 2 rounds then scan to see if it is working. My hope and what I am praying for is that this treatment will at least stabilize the growth so that potentially I will become a candidate for surgery, or at least give me some more time and possibly yet another break from the cocktail. Only time will tell ……. But I will tell you this …. I will be ok, and I will continue to enjoy the things that I can, and this summer I am planning on returning to Chiavari to spend time with my family…..so let’s get this rolling so I can get living!!

Make it a great day!!

Photo: A photo of Mara from last week.

10/4/21

Another scan.....I wonder how many I actually have had? I am sure some people keep track, but not me. Mondays seem always to be scan days. So it was for me yesterday….scan day.

This one has brought on the scan anxiety for some reason. Maybe it is because my pain has increased, from the back and now other areas. Maybe it is because my mind is not littered with chemo fog and I am able to clearly worry more? Maybe it is because I have noticed that I have not been diligent with my meditation and prayer. One thing leads to another and there goes another day without me taking the time to calm my mind.

Whatever the reason this scan felt different.

It started coming on Sunday night…. the worry and anxiety. I took deep breaths, calmed my body, and told Keith that I felt like this was not going to go well. He disagreed, always my cheerleader, and said there are a ton of reasons for the pain, and he is right. But it is a feeling.

The scan itself went fine. I am good at lying still and taking and holding deep breaths. The scan dye is shot into my port, and it pumps through my veins so the camera can get a good view of what is going on.

Tomorrow I meet with my trial doctor, and we will see what it shows. If the lesions are stable or decreased, then we continue. If we see growth, then I stop the trial and go back to the drawing board. The drawing board is getting a lot of use with my journey, so I know that it will provide another potential option, but I also know that it is running out of them. Either way, we will figure it out. But for now, I am off to take a nap ….. the emotional ride of scans has wiped me out and rest is just what the doctor ordered.

Make it a GREAT day!!

Image: Mara last week receiving her clinical trial chemo treatment.

Photo: Mara with Keith and their children, Ale and Kiara

9/16/21

Do you know that humans talk to themselves more than they talk to anyone else? 1200 thoughts run through our mind in minutes. So, imagine if you were surrounded by hundreds of people telling you negative things on rapid fire, machine guns shooting insults and inducing fear, chipping away at your confidence and hope. This is what our mind can do to us if we allow it.

Even I have those days…..although I fight them, they come and knock at the door every once and awhile. I call it the rabbit…..trying to entice me to dive into the rabbit hole. The rabbit hole is deep and dark some days, and although I try not to fall down it sometimes it happens.

Slowly, I remind myself that the mind is a powerful thing and that allowing the pull into the hole is one way to loose the battle. So, I quiet my mind and climb out. Sometimes it takes me all day and sometimes it is quick.  Today it took a bit longer.

Treatment has been going fine and all in all I seem to feel okay. However, I have started to have some crazy back pain that I cannot figure out. As you can imagine, the rabbit hole begins to suck me in like a vortex opening beneath my feet. The slip is slow and sometimes scary. Remember your mind is extremely powerful, and if you let it, it will begin to tell you all kinds of things.

Here is what I know. The last scans showed no change in the lesion on my spine and no other signs of cancer in the areas where I am having pain due to a very large hernia from my surgery. I have no core muscle wall which results in my back muscles taking all of the brunt of my movements. My muscles have begun to cramp daily which is a result of so much chemo, so the pain could be deferred pain from the spasms, etc.

So, you see there are some very logical reasons why my back is bothering me, but even knowing that the thoughts still creep in. I sit with them, acknowledge my fear, anxiety, and worry and then move on. Somedays it is easier than others, but I always move on.

Today what helped me do that was a visit with a new friend. He is battling cancer as well and our paths crossed through another friend and hanging out at the chemo spa. It is by pure coincidence that my parents just bought a condo in the same neighborhood as he and his wife. Today when I was checking on the condo, I texted to invite them over for a visit. It was great to see him outside of the spa. He is post-surgery and is getting ready for the next step to rid his body of the cancer for good. The 3 of us visited and shared stories. I told him that the rabbit hole was prevalent today and he looked at me and said, “It's ok to feel that way” (or something like that) and in that moment I was out of the hole. He is right, and of course I know it because I always move on, but it is so nice to hear it from someone else who is fighting this horrible, painful, life changing fight. He shared that I have inspired him, but he also inspires me! His drive to get stronger and take the next step with vigor and bravery. He will get through it and my hope for him is that he never has to hear the word cancer again. I know that he would have the same wish for me.

So anyways I go on. I will get up in the morning and go for my walk, do my exercise, enjoy the time I have and make it a great day.  Pain or no pain it feels so good to be alive.

Onward and upward my friends…. Every. Single. Day.

Make it a great one

xoxo

8/29/21

The Rolling Stones is one of my all-time favorite bands.  I have seen them numerous times live and have blasted the songs loud for years.  I solidified many friendships while singing out loud to many of the songs, my senior quote in the high school yearbook was "you can't always get what you want .... but if you try sometimes, you just might find, you get what you need".  One of my favorite Rolling Stones lines is " Time is on my side ..... yes it is"....can you hear me singing it?  It always got me thinking about time. I am amazed at how quickly time goes and how lucky I am to continue to have time. I remember people saying when our children were young to soak in the moment because time flies. I remember feeling young and thinking that 30 was so far away.  I remember getting married and thinking that 20 years was a long time to be with the same person. Time, such a strange concept.  Obviously, time has changed for me, and how I view it has also changed. I strive to take in every moment because I know that time is limited and time can be taken in just a split second. So, I sit here thinking about time.

I have had 3 doses of the trial drug and each one has gone a little better than the last.  I have to say that besides exhaustion and little nausea I am weathering it well. I have done so many EKG’s and I wonder how they can take so much blood in one day. Treatment day’s are long and I have lots of time to sit, think, read (all though I don’t have the attention to do so) work and try to sleep. The day starts at 7:45 and goes until 5:45. I have 4 treatments left and then we do scans.  It is a weird feeling, I guess it is similar to the feeling when I finish off chemo treatments and am waiting to get scans.  I am hopeful and nervous, excited and scared and a little bit pissed that I have to do this on and on and on never knowing if it going to work.  But then I began to tell myself …..Mara….don’t waste your time ….

So as I sat at treatment last week I thought of all of the good that has come from my unfortunate situation.  Some people may choose to look at the hard stuff, I choose to look at the good stuff ……the patience I have learned, the strengthened ability to listen to people, my love for the little things and the pure ability to find joy in most anything I do. I have learned that a smile goes a long way, loud music in the car is healing and that there are way too many people battling this crazy disease of cancer (ok that one thing is not that good – but very true). Then I thought about the time that I commit to taking care of myself and others. I think of the time that I spend filling my heart with joy and the time that I spend laughing and loving. You see, my time could be spent thinking about all of the things that are hard about this journey (the list is long), but then I would be wasting precious time.

Who knows how much time any of us has, if for some reason I am given more time, then I am for sure going to enjoy it as much as I can! So, don’t waste your time with worry or hate, don’t waste your time on the things that have gone wrong or things that you don’t like.  Focus on what has gone right because of your situation, hold on to what you have and how beautiful your time on this earth is. You know my saying ….. make it a great day. Well I say it because I mean it ….. by making it a great day you are making a clear decision to focus on what is great about the day, thus taking full advantage of the time that you have.

So from me to you always remember ........Make it a GREAT day

8/10/21

It has been awhile since I wrote and I have to say that a lot has happened over the past few weeks. The waiting continues and time passes as I try to enjoy each day without receiving treatment for the cancer growing in my body. It is a strange feeling to have days, or should I say weeks, without treatment when I know that the cancer is larger than it was a few months ago. Most times I feel grateful and enjoy the fact that I actually can do some things, and then there are the days that I spend worrying and wondering…

Needless to say, I am still here, waiting and wondering and excited to see what is next. The liver biopsy genetic testing came back and doctors are looking for trials that may be of benefit to give me more days, but even before the testing came back I got a call from Dr. Berry. He referred me to a research doctor within Florida Cancer Specialists that had an opening in a trial he is doing that attacks the MCL1 marker in cancer cells.  I spent about a week being tested, blood drawn, EKG, Echocardiogram and more testing to find out that I qualified to be admitted into the trial.  Due to the fact that I have a rare type of Sarcoma (LMS) there is not a lot of data on results, but when the smartest doctors and scientists that study this for a living are telling me it’s a good trial, I jump on board.  I was given a start date of 8/9/21, giving us a week or so before the new drug started.  So, I decided to pretend that I did not have CANCER!!!

My family and I headed to Mineral Bluff, Georgia on the Toccoa River for a week of relaxation and rest.  My parents came and my sister Giovannina and her husband Woody flew in from Seattle.  We all gathered at our friend’s cabin (or should I say amazing resort style home, the Toccoa Dream Lodge) right on the Toccoa River.  Immediately we fell in love. The sound of the river seemed to wash away all of my worry and stress that I store deep down.  The birds singing and the cool breeze was music to my ears and the laughter and love that filled the house was rejuvenating and relaxing.  Slowly I noticed how Keith and the kids, not to mention everyone, began to let the mountain air and river water ease our pain. Yep, pain, it’s been a tough few years, not just for me but for my husband, children and everyone that loves me.  Keith is my rock, he stands strong and does not waiver, although I can see it in his eyes.  The fear, the sadness that I am in pain or have to go through all of the things that I have endured. As he sat in the middle of the river on a rock for long periods of time I could see the water wash away some of that.  I walked every morning, usually 3 miles or so (it was only 65) and cleared space in my head and body for more tolerance and ability to continue my fight. We floated down the river and played in the water. We had bonfires with our own personal guitar player and sing a long, we hiked, we cooked and we went zip lining !!!  I didn’t talk about cancer, how I was feeling or what had happened to me or what is to come.  No one knew I was sick when we walked around the cute town of Blue Ridge.  My kids and I made memories and Keith and I dreamed of buying a little place in that area someday when we grow old.  All of this healed my soul.  We all returned ready for what is to come next, even though none of us really know what that is at any given time.

When we left the mountains we all felt better and more ready.  Kiara headed back to FSU to join her sorority for Rush week, my sister and hubby headed back to Seattle to get back to work, and we headed home.

Alessandro started high school today at Manatee and I cannot believe how grown up he looked. Keith is back to work and excited about coaching and teaching and I started the trial that I am hopeful will do wonders for me and my situation. The infusions will start Wednesday and I will see what the side effects are, although I was told I would not lose my hair, so we shall see. Time passes and I embrace what is right in front of me. I tend not to think about the future any more due to the fact that I don’t know how much time I have, but I will tell you what, it was nice to think of Keith and I sitting on the porch of a small river home surrounded by my kids and grandkids.  Maybe it will happen, maybe it won’t but it always good to dream!

I hope all of you found a way to let go of any stress or worry to make space for gratitude and joy.  If there is one thing I can tell you is that gratitude and joy will fill you with strength, happiness and peace and give you the ability to welcome each day with an open heart.  Here’s to crisp mountain air and guitar pickin'!

Make it a great day!

"My vision of a miracle has changed and shifted throughout the past few years."

People sometimes say to me “you are a miracle”. I have heard it along with things like “what you have been through is a miracle” or “you are so strong”. I have said these things to myself before as well to keep me going when all I want to do is lie down. Don’t worry I do a lot of that!  However, this morning the word “miracle” was redefined in my brain. Yes, I believe in miracles and also believe that some refer to them as coincidences, but my vision of a miracle has changed and shifted throughout the past few years.

Here is what I think is a miracle ….. life as it is.

I think that we are surrounded by miracles from our breath to the weeds that push up in the crack of a concrete slab.  I think that ocean waves down to the smallest shell are miracles, I believe that our bodies, all of their gifts and abilities are a miracle.  Children and their unapologetic love and passion for life is a miracle.  Trees and plants that bear food for us to nourish our bodies are miracles.  I believe that our ability to connect with people and how we nurture those in need is a miracle.  I could go on and on.  Finding the miracle in each day, or as I say, making it a great day has helped me frame my experience and diagnosis.

Last week at my liver biopsy the nurse looked at me then back at the computer, she did this a few times then finally asked “can you tell me your name and birthdate again” and so I did.  “Wow….what you have been through and what is in this file does not match how you look” We both laughed a bit and I shared with her that I strive every day to make sure that I make it a great day and she smiled.  “Well, whatever you are doing is working because you look great”. The liver biopsy went well and they collected enough tissue to do the full genetic testing, that being said …… dang….taking a chunk out of your liver is no joke!  This week has been the waiting game (I have played it many times) of trying to keep myself busy without thinking too much about what comes next. Thankfully, it was also my birthday week, so lots of joy was around and flowing through me especially when I realized at the dinner table that I was only 52 and not 53!!  I could blame it on chemo brain, but this is not the first time I have thought I was older than I really am.

So the waiting continues and whatever it is will be a miracle in its own sense. Another challenge for my mind and body to help me continue to grow and push myself to new heights. Hopefully, getting me down the road of a chemo break or remission of some type.  Either way, it will be what it is.  So, until I meet with my doctor I will walk the park, eat as much as I can stomach, take time to myself and play with my family.  I will make it a great day full of love and smiles and know that I am surrounded by miracles.   I hope that you take some time to recognize the miracles surrounding and inside of yourself, I hope you laugh and I hope your body continues to be healthy and happy.

Make it a GREAT day!!

6/24/21

When news hits like a sucker punch to the gut it gets old. Time after time the news settles deeper and deeper until it chips away at your core threatening to take you down.

That is how I felt while going through the car wash when my phone rang on Tuesday. The punch hit harder than I thought, maybe it is because I am physically and mentally feeling so good. But then I remind myself that cancer does not hurt all of the time. When the hit came I was unprepared and my core was open and weak just waiting to get rocked. So, it rocked me, took me to my knees in the car wash, and I when the call was over I screamed at the top of my lungs. I sat with the news that the lesions in my liver have grown and then focused on the news that the lung and spine lesions are stable. I took deep breaths and tried to slow my mind.

More chemo? Are there others that work? Surgery? Is it too risky? Trials? Would I be even eligible?? Thankfully my core is strong and has endured so many hits already that I was able to take the hit, absorb it and breathe. A dear friend reminded me that I did not need to know what to do, that the doctors would figure it out, and so I wait.

Yesterday was spent setting up appointments, calling doctors, etc. I spent the other time of the day focusing on myself, my husband, and my kids. We cleaned (I know boring right!), cooked, ran errands, and went out to dinner!!! Keith kept telling me to rest, lie down, etc. I explained to him that when we were all together that I want to be up and doing things. One day at a time.

Sometimes it takes all of my strength to walk to the mailbox, and this in the past has actually sometimes even been my exercise. Yesterday at some point late in the afternoon I walked to the mailbox to get the mail. Someone sent me a card, the front of it reads, "Day after day your strength shows up in miraculous ways.." I read it over and over and over. The inside was filled with a beautiful message from a friend. The words were pure and sunk deep into my core restoring what the hits have chipped away. The card reminded me that this is just another day and that if we continue to show up then we are bound to do wonderful things. As usual, the 24 hours after new news is tough so this card came at the perfect time. I read it to my family, I read it again, and then I placed it on my table where all of the cards that are sent go before I put them in a basket so packed full of cards I don’t know what to do with all of them.

After reading the handwritten message I searched for a name, a signature, something that would tell me who it was from. Nothing. All I know is that it came from Minnesota. We all tried to think if we know anyone in MN and came up with nothing. Maybe one of you moved there and did not tell me? Maybe it is someone I don’t know? Kiara’s theory is that the person who sent it didn’t need to sign it, they just wanted to send strength. Well, it worked, however, if it was you that sent the card…..thank you.

Today, I awoke with newfound strength, it amazes me that after so much I can still find it, but I do and will continue to do so. I am dressed and ready for my walk, the rain last night cooled our air a bit and the sun is just starting to peak out. I will start my day by recognizing all that we are blessed with, all that we can do for others, and all that I am looking forward to. I will show up for myself, my neighbors, my friends and family, and for strangers. I will continue this battle to the best of my ability and I plan on having fun while doing it.

Here is to showing up and making it a GREAT day

xoxo

6/4/21

While I sat this week and reflected, prayed, and meditated I called out for healing for 3 new people that I now think of and love. 3 people have been given the news that cancer is invading their body. 2 are far away and 1 is a new friend that I have met through others.  Needless to say, they all have people that love them and families that are scared and angry.   As I thought about what I could do to help I began thinking of all of the knowledge that I have collected on my journey. Don’t get me wrong, I am no expert, just a person who has been blessed with more days in the crazy world of cancer.

So, I'm writing……hoping that what I have learned will help those who are traveling down the same path and those people who care for them. I am quick to say that this is not medical advice or the end-all. Rather, this is a conglomeration of thoughts, ideas, and solutions that worked for me along the way. If my offerings help just one person, it is worth it.

What to do when you hear the word's “you have cancer”….

Everyone’s diagnosis and prognosis are different, but there are a few things that I made sure that I did when I got the news.

1. Contact everyone you know in the medical field to find the best doctors and/or specialist.
2. Get copies of all of your scans and medical records.
3. Get more than one opinion – or as I tell people – get as many eyes on your case as possible. Your options may be different with different doctors.
4. Do your research - Remember that you are paying the doctor – if you are uncomfortable, do not connect with them, or just don’t like them – find another doctor.
5. Remember that you can do whatever you want – the doctor is advising you to do what is best – but you have to decide what is best for you and your situation.
6. BREATHE

Getting ready for treatment/chemo/radiation:

1. Stay as active as possible
2. Get a port if your treatment is going to be prolonged (or short) it will help save your veins and makes the treatment much easier.
3. Get used to drinking as much water as possible- (I like to add 1/2 lemon to mine).
4. EAT – if you can put on weight…do it.
5. Embrace yourself and develop a positive mindset that will help in every aspect of your life.
6. BREATHE

During treatment

1. Try to stay as active as you can – take a walk, lift a can of beans, sit down and stand up 5 times – whatever you can do …. Do it!
2. Schedule fluids – this will help you from becoming dehydrated.
3. Listen to your body and rest as much as you can- I remember sleeping for days.
4. Communicate frequently with your medical team – you may feel strange letting them know about an achy back or constipation but they need to know everything that is going on in your body.
5. Reduce sugar intake and increase protein and veggies….sad but true…and not fun…but it makes a big difference in how you feel.
6. Invest in natural skin products or just raw organic coconut oil– the skin is our largest organ and everything we put on it goes right into our body – get the best stuff – and slather it on your body daily.
7. Make a simple mouthwash – water, baking soda, and a touch of salt – use it as much as possible – you will avoid mouth sores.
8. Practice being grateful- during a fight, your body will become depleted, your energy will fade and your mind will begin to take you to deep dark places – open your eyes, look around at all you have to be grateful, and begin to recognize that you are in charge of how you move forward.
9. Make sure you have these things in your house: Claritin-helps with inflammation when your body is making white blood cells; Benadryl-helps when you are reacting to anything; Advil-chemo can give you killer headache; Tylenol-chemo can give you lots of aches and pains; Lidocaine-use on your port 1 hour before you have an appointment; Imodium-if this does not work call your doctor ASAP; Suppositories-only thing that works – skip drinking nasty stuff and just use these!; Eye drops-for dry and swollen eyes; Burts bees lip moisturizer – I like the vanilla bean; Comfy hats or scarfs, and socks!!!
10. BREATHE

I am hopeful that this helps. The list is not everything but just the ones that have popped into my mind this morning. The biggest thing is to Make every day a GREAT day….no matter what is happening. Remember that sick or healthy all we have is right now. I enjoyed a chemo-free week and it always amazes me how my body can heal and recover when it does not have the onslaught of infusions. I took advantage of my good days. I walked the beach, relaxed in my backyard, had lunch with my kids, stayed up late with my husband, swam with my momma, and did a lot of being grateful. I hope that you find the GREAT in today and every day. I hope you sit and breathe and continue to enjoy the blessings that you have been given.

Go make it a GREAT day…..I know I will!!

Xoxoxo

5/26/21

I cannot believe it, but Alessandro graduates from Center Montessori, a school that has been his home for over 12 years. How is it possible? Time is such an amazing thing, sometimes it goes slower than you could ever imagine and other times all you do is blink and years are gone in a moment. Right before our eyes our children are growing and developing and changing.

It seems as though it was just yesterday when we brought Ale home from Guatemala. The day was November 21^st, 2008; he was 10 months.  It was a rush to get out of Guatemala, as Guatemala was changing the adoption laws and had decided to close to the United States. Over the 10 months of his life I travelled to Guatemala City about every 6 weeks, sometimes by myself, or with a friend, or with Kiara and Keith.

During the time that I spent in the country, I felt amazed by a few things.  One, how his foster mother, Michelle, never put him down.  When she passed him off to me in the lobby of the Westin in a locked-down area of the city, she explained that he only is happy when he is being held, how I was to feed him, and what he liked to eat. She hugged him and kissed him and cried a little when she passed him to me.  All I could feel was grateful.  Grateful that my son had someone that loved him so much and cared for him so kindly.

The other thing that stuck out like a sore thumb was the extreme poverty and wealth. The hotel was packed full of Americans, there were even a few floors dedicated to adopting families. Some walls of some of the rooms were removed to make “play rooms” filled with baby items, bouncy chairs, changing tables, and computers so the adopting parents could reach out to those at home.

I remember wanting to go for a walk, so I packed a backpack and put Ale in my Baby Bjorn, his favorite type of transportation - remember he did not like to be put down. I filled my water bottle and headed for the lobby. In the elevator going down another adopting family asked where I was going. I responded simply, “for a walk.” By the look on their faces I could tell that they were surprised. The woman said, “Oh, well be careful” and they got off and scurried to the pool area. As I walked through the lobby and towards the door a man called from behind the check-in desk, “Excuse me ma’am, can we take you somewhere?” I let him know that I was ok and that I was just going to go for a walk.  At that moment a few guards were at the door, they usually open it, but they stood still and one explained to me that it was not a good idea to leave the property, especially with the baby. I was confused but quickly understood that they were worried and that I was going nowhere except to the pool……again. I nodded my head, thanked them for letting me know and changed my direction to head to the pool area.

When I left to go home, to Florida, I had a long conversation with the taxi driver. She explained to me that outside of certain neighborhoods the crime was extremely high, and the money that “they” could get for a baby of an American couple would be huge. She explained the corrupt areas of the government and the stark difference between “the haves and have-nots.”

Every time I went back to Guatemala, I made it a point to notice all of where I was, to help when I could and to bring Michelle as much as I could. It was clear that she was of the group “have-nots.” When Alessandro came home I made it a priority to call Guatemala and keep in touch with Michelle for as long as I could.  It seemed as though she changed phone numbers every few weeks, and my Spanish was not that good, but we got along with the help of friends. I lost touch with her about 2 years after Ale came home.  She was pregnant when our adoption was final, and I remember thinking that was the greatest blessing ever for her and her husband.

I wonder what her family is doing now?  Are they safe? Do the children get to play outside? Over the years, Alessandro has asked questions about Guatemala, his birth family and foster family, and the adoption. We always answer with all of the information we have, and I promised him that I would take him back there some day.

The years have gone by and in just a blink of the eye he is 14, moving to high school, curious, loving and one of the most empathetic people I know. I am grateful for the gift of watching my son get to 14 but also nervous that I won’t be able to follow through on my promise to bring him to Guatemala someday.

You see cancer can steal dreams of what could be, so I practice making every day count. I strive to be there for my kids even when chemo has kicked my ass. When my mom tells me that they are old enough to make their own lunches, I tell her that I will make their lunches until I cannot do so anymore. They will grow up and leave and that is what they are supposed to do, but while they are home I want to make sure that I am present, no matter what. I also have to accept that there will be days when I cannot get out of bed and make their lunch or hang with them and days where all I can do is to just get by. Knowing that I have been present for as long as I possibly can will help me lie in peace when it is my time.

So, the days continue, and my fight continues. I am strong and brave and cancer has no place in my body. I will be present and full of love for those around me, but more so for my children, who have the ability to take all of my pain away, to make me feel as though it is the best day ever just with a hug and kiss, a snuggle or a laugh. I hope that love and laughter fill your day today ……. It always makes things better.

Thank you to my babies, Kiara and Alessandro, for being the pride and joy of my world. I know you will do great things and be world changers…..because you have changed my world for sure!

I love you to the moon and back forever and ever……no matter what!

xxoxo

5/5/21

When I was growing up, Clear Lake was one of my favorite places. It is still, however I have not been able to get there in quite awhile. The lake itself is a big lake located in Indiana, our old lake house was huge and held all of the family (aunts, uncles, cousins, etc.) we gathered there for as much time as we could, from holidays to long weekends, to weeks over the summer.  As a kid it was long days of fishing at the crack of dawn, bike rides around the lake with a picnic, tons of lake baths and water sports.  If we weren’t swimming or sailing we were skiing, tubing or knee boarding (kids call this wake boarding now).  We were only inside to grab something to eat or change bathing suits.  Evenings were filled with “Souers Hours” which was a gourmet happy hour, either prepared by Nana or all of the aunts.  We would then pack as many people as we could on the pontoon boat and Papa would drive us around the lake for sunset.  If we were lucky we would talk the adults into a bon fire.  The memories flood my mind as I write.  I remember waking Brigette (my cousin) up to beg her to go fishing with me at dawn (she likes to sleep in) as we loaded up the little boat I remember Nana on her knees in her beloved gardens tending to her flowers and papa sitting on the deck watching the sun come up with his cup of coffee.

As we got older one of the goals was to be able to take the big boats out by ourselves, being the oldest 2 cousins Brigette and I had big plans.  However, in order to do this we had to succumb to my father’s swim test and boating rules.  The swim test was easy, or so we thought.  My dad drove us out to what we called the “black hole” in the middle of the lake.  He instructed us that we needed to swim around the boat 100 times (maybe I am exaggerating, but I don’t think so).  Brigette and I looked at each other and jumped in.  We swam and swam and swam and then we swam some more, I remember being exhausted and telling my dad this was crazy, and I remember him saying that if I needed to swim to shore it would be farther.  Finally, we were done, or maybe he gave us a break, but needless to say we were allowed back on the boat.  At that point he went over boat rules and the signs that we knew so well already.  When you are doing any water sports in our family you have to know the signs.

Thumbs up = faster

Thumbs down = slower

Finger in a circle= head home

Hand across the neck= cut the engine

We knew these well, we used them daily along with a wave once we crashed and burned on our ski’s or tube, we had to wave as soon as we came up to let the driver know we were ok.  I had not used one of those signs in years …….. until yesterday.

Yesterday was the second dose of chemo, which means it was a combination of 2 drugs, GEM and TAX is what I call them.  Neither one is particularly wonderful but I have had them before and I wasn’t fazed by having them again …. They worked so I am game.  As you know I have watched and supported patients when they have a reaction in the spa, I did have a slight reaction once long ago, however I can’t remember what it was from.  My nurse, Barb, went over all of the regular stuff yesterday and got me rolling.  We did my steroids and nausea meds first then switched the bag to the TAX.  As usual, she went over the protocol. “If you feel anything different call me immediately” I told her that I have had this chemo with no issues over 5 times, she repeated herself.  The bag began to drip…..within a very quick 2 minutes I began to feel hot, then it hit me, nausea, and I began to black out all I could think was I had to tell a nurse quick so I called out to Barb as loud as I could, which was not loud, because now I couldn’t breathe. So, I reverted to my dad’s sign …… cut the engine. My hand flew up and I began to drag my hand across my neck, CUT THE ENGINE.  I vaguely remember a few things, lot’s of nurses, my face swelling violently and the joy of an oxygen tank helping me breathe.I went into meditation mode to keep myself calm and slow my breathing.  Slow shallow breaths.

If you know me at all humor is how I get through some of the really crappy shit. I heard a nurse ask who it was and another one say “It’s Mara” I couldn’t imagine who the nurse was because I know all of them, find out later that the reason why the nurse had to ask was because my face was so swollen she couldn’t recognize me…..oh yes and I was purple. One nurse was stopping the chemo, while another was pushing meds, and yet another giving me oxygen and on top of that another one taking vitals.  It was fast and horrifying and then almost as quickly as it started it began to subside.  Humor right ….. I asked the nurses 2 questions ….. first was “who the hell didn’t know it was me?” and “can your eyes truly pop out of your head? Because I think mine almost did!”  The nurses didn’t answer the first question but assured me that my eyes would not pop out. My face was feeling better, I tried to open my eyes.  Slowly I came back to my body and was able to form a sentence and open my eyes.  The next half hour or so was observation to make sure I was ok.  Thankfully I was, I did not have to go the hospital and I felt better.  My doctor came out and he made a plan to try again today.  I can’t say I was happy, but I also don’t want to miss a dose.

When I arrived at chemo today I have to be honest, I was nervous and worried about having another reaction.  Brian called me in his office and indicated that he had been reading all night about my reaction and had decided to not push TAX again until he could consult with my oncologist at MDA.  I feel relived and bummed all at the same time.  Relieved that I don’t have chemo today, but bummed that I will be missing a dose of a drug that worked.  I am petrified that my lesions are growing and that I won’t be able to get ahead of it again, but then I remember that I have over come so much more in the past 3 years and that I can do this.  Keith holds me and reminds me that I am a fighter and that I will be ok.

So we will go back to the drawing board, try the same stuff or a new cocktail and continue to fight so I can get back to living my life to the fullest.

I have a ton of things I am grateful for and now fresh air and breathing has been added to it.  I hope that you take time to tend to your flowers like my Nana, or sip coffee while watching the water, or enjoy teaching your children or grandchildren the important sign of CUT THE ENGINE …. You never know when they will need to use it!!

Make it a GREAT day ….. I know I will!

xoxoxo

4/25/21

My fate is always in the back of my mind, or at least I think it is.  When you have the knowledge that you will live and fight cancer for the rest of your life as you can imagine, it changes you.  However, after so long of feeling good, exercising, enjoying some sort of normal that knowledge or thought shifts. I have to admit it seeps away, maybe it is because deep down I will always hold the hope that the cancer will just “go away”, or maybe because in some place in the mind I almost forget that it is there, whatever it is, it happens.  It has been almost a year since I fought the big C and I have embraced every moment of that time.  Walking, sitting, enjoying and pushing down my fears of it ever returning.  So that is why when my scans came last Monday I tried hard to not worry. I took deep breaths, focused on my body and did what I do so well every few months for scans….lied very still. Keith drove me, he insisted, maybe he could tell that I was more nervous than usual, maybe he could feel a little of what I felt, but he would never say it out loud. It’s COVID still, so that means he sits in the car and works while I am inside the tube.

Later that day I began to feel it, it starts in your gut, when I just know something is not right, it rises up in my body like a hot iron and when it gets to my head it exits in the form of tears and fear. My mom hugged me and wondered what was going on, I shared that Brian had not texted me yet and that I knew something was not right. Keith told me to not worry, I was fine, he was busy.  But like I said before I felt it, not in any form, but just “it”.

When I finally talked to Brian the news hit like a storm, first listening and then trying to understand, and last trying to explain it to my husband through sobs and tears. He held me and did his duty of rubbing my back and letting me know that everything was going to be ok, that I would fight and win again, that I was strong.  He is lucky I didn’t punch him…not because I would or have ever, but because I am soooo sick of hearing those fucking words! I don’t want to be strong, I don’t want to fight, I don’t want it to be OK. I want to live without worry, I want to feel normal again, I want to be able to play and hike and eat whatever I want without having to carbohydrate count, take insulin, stop what I am doing because I’m too exhausted to go on.

The next few days were a blur, for 2 reasons, one of course because I knew I was walking around with cancer growing again, and the other because I was heading out on a 3-day adventure that was supposed to be amazing.  So, I took a deep breath and told myself that it was time to focus on the task at hand, getting Alessandro to Ginnie Springs for his school camping trip and then driving to Tallahassee to help Kiara pack up her dorm room. The trip with my dad was just what I needed. Keith and I decided to not tell the kids till Kiara was home on Saturday - why ruin a perfectly wonderful camping trip for Alessandro or put stress on Kiara as she finished up finals.

Ginnie Springs did not disappoint, we arrived early enough for Alessandro and I to sit on a picnic table and play cards while my dad swam in the cold water. The breeze, beautiful surroundings and time with my boy began to heal my soul.  When his classmates rolled in, we were pretty much invisible so hugs were given and off we went.

Kiara was excited to have her Papa on campus, we ate great food, helped her pack and she gave us the full tour of the campus. Watching her and my dad hang together brought me peace and slowly my mind was getting stronger again. The nights were a different monster though, sleep did not come easily and the thoughts of “what if” raced as we waited for my MD Anderson doctors to read the reports and consult with Brian. After a full 2 days and a long trip in a full car home we returned to Bradenton.

Friday morning Keith and I met with Brian to go over the options and potential plan.

Unfortunately, the scans show growth in the liver and lung lesions, with an addition of a few more. They also show a lesion on the spine and one potentially on the neck. The news knocked me over…..flat. But then Brian began to talk and reminded me that the last chemo not only halted the growth, but shrank my lesions small enough that I got 11 months off of chemo. In the world of Leiomyosarcoma, this is somewhat unheard of. So, I began to realign my mind with my life with cancer. If you read my writings or know me at all, you know that I work hard at living in the moment, enjoying the day and making sure that I don’t get ahead of myself, but it happens so easily and so it took me a bit to reclaim my present. Thankfully, I am here, blessed with another day. Let this day bring what it may and give me the strength to sit with it and do with it what I can.

Tomorrow is our 24^th wedding anniversary.  Tomorrow I will have a PET scan to determine the plan for my spine tumors. Tuesday, I start chemotherapy again and then potential radiation for the spine. My life has changed again but I am so blessed to be able to fight and win again so I can continue to watch this beautiful world unfold around me. It is a joy to see my children grow, spend time with my family, watch my friends flourish and to see the sun go up and go down. The future is unknown, I don’t know how long I will be here, and neither do you. So, my days of diving down the rabbit hole with “what if’s” are finished for a while as I gear up for ROUND 3, in the fight for my life. I will face it head on and will win again and again and again if that is what I have to do. Don’t get me wrong, it is going to suck, and be hard and painful but it gives me more time on this earth to enjoy my beautiful life then so be it.

Go make it a GREAT day and remember that nothing is for sure, everything is temporary and you are always stronger than you ever imagined.

2/26/21

Amor Fati. This is what I kept in my heart as I walked this morning.

The sun was rising and the air was brisk and chilly.  As I walked I meditated and prayed and thought of life as I know it now and the blessings that it brings me.  As I rounded my corner to head home I noticed my big Jacaranda tree in our yard.  My smile was big as memories flooded my head of all of the years with that tree. The tree has been the backdrop to uncountable 1^st day of school pictures, birthday pictures, cotillion pictures, and so on and so on.  The purple flowers carpet our lawn when they are in bloom and when the kids were little they loved picking them up, using them for princess beds and race tracks.  The limbs have bent and held all of the neighborhood kids and have supported play dates, sleepovers, and scavenger hunt crews of large teenagers.  The shade that it provides is the perfect place for all of our family dogs (over the years) to lie in and watch the world go by, and I would lie next to them while the kids climbed the tree.

Amor Fati

The tree is aging, branches are starting to die and it does not produce as many flowers anymore but the memories it holds are priceless and its roots are strong and sturdy.  On this day last year, I was bald and sick and tired, I did walk on that day, I made it to a bench at DeSoto park and watched the water.  I remember thinking to myself that I was tired of chemo, tired of being itchy, tired of not tasting anything or tasting nothing but metal, tired of my nails falling off etc, but then I switched my energy and started thinking of the things that bring me joy.

I was happy for having a not so bumpy head, grateful for coconut oil that takes away the itch, grateful for the ability to chew and digest food, grateful that the chemo was working, grateful that I woke up and was able to walk, the list goes on and on.

Amor Fati

This morning is no different in a way. My gratefulness is over the top and I find myself smiling nonstop, for no special reason besides just being up and moving!  You see when we imagine our life, our marriage, our children, our own beings we imagine what we think we want, never knowing what fate has in store for us.  We have one way of having the best life ever and it is embracing what comes our way and looking at it for what it is in that exact moment, a blessing.  Without the ups and downs of life, the challenges, and joys, how are we to grow and understand that all of this is a gift that we are given? We choose how to use our days, our energy, our blessings, whatever you want to call them.  Trust me, not all days are great.  Some suck and are painful and feel as though you sometimes won’t make it to the other side, but when I am in that space I find it even more important to try and find my piece of peace, one thing that I can hold on to that will help me ride it out, like a buoy floating on top, or a life jacket keeping you up when everything else is trying to drag you down.

Amor Fati

March will hold new challenges, more blessings, and if we are all lucky enough, days full of joy and health.  You see I choose to love my fate, whatever it brings my way….and we all know that it brings things that you would never imagine, both good and horrible, both blessings and challenges, both amazing and gut-wrenching, but with that knowledge I challenge you to ….. Love your fate …or

Amor Fati

(A Latin phrase that translates to "love of fate.")

xoxoxo

2/15/21

When my battle started I was amazed by the amount of love that was poured my way.  Love in the form of so many different things and from people all around the globe. Some people I knew, some my family knew and some I had no idea who they were. One person that I knew well was and is my dear friend Tricia Hackworth. (Photo, Mara and Tricia)

Tricia and I met years ago…..like 25+ and have been close ever since.  She has always been there for me and vice versa. She is creative and kind, determined and thoughtful. We helped raise each other's children and survived the days when our husbands were traveling for weeks on end.  Our friendship has grown and even when she moved away we continued to lean on each other.  So it was no surprise when Tricia swooped in when my diagnosis hit us all like a brick wall. Her support never failed, as it was with all of my closest friends, and I was and am grateful.

Ok….so Tricia is a runner. I am not, never had been and surely was not running back in my first round of 8 hours of chemo a day at the spa!  So needless to say, Tricia put together the first Make It A Great Day 5K!  She and her whole family set up a course, made medals for all of the participants, and collected donations that would be used to fund my travels back and forth to Houston. It took place on New Years Day and from what I remember it was wonderful. I was in major chemo and had no energy, but I made it there to walk around the block. Friends and families that I knew arrived with a smile and a heart full of hope for me.  They ran and walked and scootered and then played and enjoyed the beautiful day, all in the name of helping me. I was touched and felt so much love. I sat on a chair in the yard and watched and smiled and was once again amazed at the love that was pouring into me.  Tricia sat next to me and held my hand and I knew that I would fight even harder.

The chemo continued, a large surgery happened, l lost hair and lots of weight but I gained much more.

The people who surrounded me lifted me up in a way that they will never understand.  You see when you are sick and the future is unknown (by the way no one knows their future when they are healthy either) you gain a strength that cannot be explained, at least I did.  A strength that superseded any sickness I was feeling. All I had to do was look at my kids or my family or my friends and I would feel it welling up inside of me. Like a hot ball of something, pushing me to push myself even harder to fight. Yes, as I sat on that chair after walking around the block my body was spent. My knees ached and my back was burning, my legs felt like lead and I am sure I was a bit dizzy, but none of that would take away from me watching kids play, families gather and my own friends enjoy life.  You see it was all a gift and one that helped me so much.

So this year, on my chemo break, I made it my goal to walk (I still do not run) at least 5 days a week.  A 5K is a breeze for me now, a 10K is a bit of a stretch but I can still do it. I get tired, my blood sugar drops, I still get dizzy and need to sit still, but I do it, somedays slower and some days faster.

Over the weekend Center Montessori School held it’s 1^st (or 2^nd) Make It A GREAT Day 5K.

The parents and random people walked “virtually” to support families in need at Center Montessori. You see I was that person once, who needed support and now it is my turn to walk so someone else can see the love and support that is out there. I had a blast and I missed seeing it all take place around me, but pictures tell a story and it looked like everyone for sure made it a GREAT day.

CEPA, the parents' association raised over $3000 to help those in need at our school!

I can tell you this …… this 5K that my girl Tricia started will continue to help those in need for years to come!  So thank you to all of you who stood and still stand by me, those of you who pray and think of me then and now, and thank you to my friends and family who showed me how to fight and live and enjoy. I know you all tell me that I have taught you so much but it flows both ways, for this is the only way a true relationship continues. To my bestie….I miss you. I love you and I am now and forever grateful for you. Although you are living far away (again), you are in my heart now and always!!

Make it a GREAT day…..I know I will!!!

xoxox

1/26/21-1/30/21

I am in shock that the end of the month is upon us.  Time has flown by and once and awhile I find myself struggling to remember what it was that I have been doing.  Of course, the big things stand out.  Kiara returned to FSU and was happy to do so, of course we are missing her but we are so glad that she is there enjoying her classes (even online) and spending time with her friends.  Alessandro returned to school, online, although I was really hoping for in person for him. After speaking with my doctors, right now at home is what is safest for me. The guilt is there, I try not to think about it but I do see his longing to go back.  He wants to finish at the school where he has spent his whole life, reconnect with friends that he has grown up with and to be able to thrive all together.  However, I work to let it go, he assures me that he does not want to go back if it is not safe for me, so he rolls out of bed, lurks to his computer and logs on every morning. He continues to draw and squeak on his saxophone, and even take a bike ride with me or a run (I ride my bike….he runs), he cracks us up and pisses me off all at the same time, but then I remember how much he has lost over the past year.  You pile that on top of having a mom with cancer and I can only imagine that it’s a bit tough.

I read something on parenting the other day and it resonated with me, don’t ask what it was, my memory is mush, but I remember the feeling it gave me.  The joy that floods over me when I am able to hold my children, the peace that settles in my body when I know that they are safe and the anxiety that grips me when I can’t get a hold of my girl, who now lives a life on her own.  I hope that it will fade, or get easier??? I am sure it will, but for now I will embrace all of the feelings and let them wash over me until I am ready to let them go.

I met a mom a few weeks ago when I sat in the doctor’s office for my scans…..SCANS!!! Yes – I had my scans…..  See I almost forgot about them!!

It seemed as though I was way more nervous for these scans than I had been for the last few.  I recognized that this time last year, is when the scan did not look good, cancer had grown and I was sent back into chemo.  So, with that in the back of my head, I prepared myself for yet another round of scans hoping only for the best.

OK – I sat in the office, masked up and ready to get my port accessed and grab my yummy mixed drink and head to my car.  A young woman walked in and looked nervous and anxious.  I smiled, hopefully she saw it in my eyes, and moved to the chair where my port would be accessed.  She ended up sitting 2 chairs down from me.  One of my favorite nurses grabbed her stool and slid into place in front of the woman. She started by introducing herself, asking questions and explaining things.  There is a shield in between all of the chairs, but I could hear the woman begin to cry.  The nurse immediately stopped and put her hand on the woman’s leg, it’s COVID – no touching, but she needed to give her some kind of support.  The woman’s sobs became a bit more intense and the nurse started to speak quietly and calmly to help her.

“It is going to be ok”

“What can I do to help you feel more comfortable?”

The kindness and caring of all of our nurses completely awes me all of the time. Doctors too, yes, but nurses are the real-life line to us as patients.  They take care of us, bathe us, feed us, help us stand when we have no energy, make sure that they are answering all of our questions and when we are breaking down they stop what they are doing and pick us up.  I watched in awe once again.

My port was accessed and everyone commented on how much hair I had grown since the last time they saw me.  The woman wept.  The nurse waited patiently.  I walked over and I waved at the woman, she looked up and tears filled her eyes.  I said to her…..”this really sucks, in fact it is really hard, maybe harder than anything that you will ever do…..it is no fun and it will not be easy”  her eyes began to dry a little.  I introduced myself and let her know that I have been fighting for years and that I would fight for the rest of my life.  The nurse smiled at me, I saw it in her eyes.  The woman seemed to calm a little bit.  I shared with her that when I was diagnosed that all I could think about was my children, the fear of not being there was over powered by my drive to be able to hold them for as long as I can.  She began to shake her head, I leaned in and I said …. “you are going to fight like hell, you are going to beat it and you are going to help someone else when they are scared….you got that??”  She kept shaking her head, the tears were gone and her eyes had changed.  You see, sometimes we just need to know exactly how crappy it is going to be, and then we can move past it.

My scans, once again, came back looking like all is going well.  My lead surgeon in Houston did notice that one of the lesions has “changed” a little bit and she is watching it carefully.  Of course, when I hear anything besides, “all is good” I feel like the wind has been knocked out of me, however I took a deep breath in and did a gut check.   I am grateful that there is no growth, I am grateful that my doctors are diligent and transparent with me about everything they see, I am grateful that I get another 3 months to grow hair, laugh with my kids, take walks with my friends and just sit in the moment.  I push myself to be able to hear whatever comes next with an open heart knowing that whatever it is I will fight like hell and help those along my way.  Make it a GREAT day…..I know I will!!

12/31/20

As I woke up this morning I gave thanks for the day and checked in with my body.  A little more achy than usual due to the daily bike rides that Keith and I have enjoyed, but other than that pretty good.  Then I remembered that it is the last day of the year and I pondered about what is to come.  I have been hearing a lot about new year's resolutions lately.  Many of you are thinking about what we want for the new year, how we want to grow, how we want our bodies to change, how we can make more money, or eat healthier, trust me, these are all things that I have worked on over the years, with resolutions and without them.

However, now my mind is structured differently.  Yes, I still have goals and aspirations and those are long term, but my resolutions come daily to me, not just when the year changes.  I strive to live in the present and hope that this year has taught others to do so as well.  So, my daily resolutions (prayers/meditation) this morning were filling my mind.

1. Pay it forward, pay it forward, pay it forward.  3 simple words that can change anyone’s day, or week or possibly a year
2. Give what you have, give what you can, just give!
3. Treat others like you would like to be treated…..always, even when I am frustrated, angry or scared
4. Be good and kind and nice

These are my daily resolutions for today, and probably most days.  Sometimes they change, but mostly they are my staples.  I feel as they are even more important during these days as we have so many who are in need.

I woke up this morning in my bed, warm and cozy covered with blankets.  I made my tea (thank you to a kind individual that sent me an amazing tea box – but with no card!) and sat in my back yard looking at my flowers, listening to the birds, and not worrying about much.  I sit in my home, with plenty to eat, money to pay my bills, I enjoy the gifts of a washing machine and a shower, not to mention clean clothing and shoes.  I turn on my lights and water flows from my faucet.  I have people that love and support me and when I am down or in need of help they run to my side.  I can walk, and balance on my feet.  My hands work well, I am strong and all in all, even living with cancer, I am healthy.  The list of gratitude goes on and on.

You see, yes, 2020 was a tough year, but there will be more tough years.  2020 showed us what we are capable of either love or hate, it peeled back the covers from so much and bared its teeth at us.  We all had a choice, we could rise to the challenge and rally or we could fall.  I chose to rise up, to embrace and to fight, for myself, my family, the community, and those who are struggling.   It is what I will always choose healthy or not, it is what I hope I have taught my children to do and it is what I hope people remember me for when I am no longer around.  You see 2020 was a great year if you look at it that way, time to re-connect with yourself, time to rest, time to reflect on what is really important to us.  The human mind is so busy living in the future with thoughts, worries, and resolutions, that we forget to stop and look around in the moment.  So, take this day and cherish it.  It may be tough, you may be struggling, or you may enjoy it and be happier than you have ever been, just remember that it is what you have right now.  That this is it, this moment, this day.  You all know my saying …. Make it a great day.

Today I ask this of you, that you not only make it a great day but that you make it a great day for someone else.  The ripple effect of these acts of kindness to strive to make someone else’s day better will spread and touch many that you don’t even know.  This my friends are what our days are about, to me it is the most important thing and I am grateful that I have the ability to help others and hopefully make their day great.  What a wonderful 2020 it has been, what a wonderful day it will be……and no matter what comes next, I will rise up to meet it with a smile on my face!

Happy New Year and I hope you feel all of my love flowing to each of you!!

12/20/20

Last year on this day Keith and I woke up in London.  It was a long trip, one that I got essentially no sleep on, due to the constant bumping, kicking, and pulling on my seat, by what I came to believe as one very tall and privileged young lady who was not happy she was not in first class.  None the less, sleep was not an option as Keith and I were excited to explore!  The kids on the other hand were very happy to sleep in their cozy beds to avoid the time change and freezing cold weather outside.  We ventured across the park and into the small village of Hackney where we found a great coffee shop bustling with people.  After getting our scones, hot tea, and coffee we set out on an adventure to scout out the neighborhood where we had rented a roomy air BnB.  The trip was our Christmas present to our family, from now on we vowed to not wait for things anymore, as we knew far too well how quickly the good days can be taken away from you.

Prior to our trip, my team of doctors at MDA informed me that they saw “something” in my liver, but that they did not want to do anything for a few months so off we went on the trip of a lifetime.  Walking the streets of London, soccer games, theater, shopping, and doing touristy things were just what the doctor ordered.  For New Years' we jumped over to Dublin and visited with our lifelong friends.  The week was filled with Grafton Street, Trinity College, fancy dinners, and time with friends who are just like family.  They commented on how good I looked and how happy they were that I was well and getting stronger.  I knew I would have to return to MDA after the holidays for more scans, however, my positive attitude would not let me diminish our trip.  Thankfully so, because who would have ever expected what we all had coming in 2020.  January’s scans showed that the cancer was back and the next step was aggressive chemo, the news began to chip away at my constant positivity.  Chemo started with a bang and within 3 rounds I was down and out, hair gone and dropping pounds, and mostly staying in bed.  The community rallied around my family and I, as my parents began to push to come and help again.  Next came some strange news, there was a virus sweeping across Asia and now making it’s way to Europe.  Our family made a plan to get my parents out of Italy ASAP, flights were booked and we all counted down till they were off the ground.  Days later the borders would close and all international travel would be halted.  More chemo, less energy, less appetite.

March came and soon I think we all had an idea that this was something that we all needed to watch and be wary of.  I joked because everyone was staying home, not going anywhere or doing anything…..are you kidding I thought…. I have been training for this!!  My body was disintegrating little by little, chemo cocktails were changed up to hopefully get in a few more rounds.  More closures around the world, more death, more sorrow.  I continued to cherish every day, I lifted up my gratitude for all that we are blessed with, and I isolated myself.  All of my doctors have said, this is not something that you can catch.  Stay home, stay healthy.  When May rolled around more scans were on the calendar.  When they came back my local oncologist breathed a sigh of relief.  He shared with me that the lesions were stable, and that was a good thing because they did not know how much more chemo my body could handle.  During the middle part of May, I actually had thoughts that I could not do it anymore, that my body could not take it and that if the lesions were reacting to the chemo that I would stop the treatments.  Keith begged me to continue and I begged him to not make me do it.  Of course, I thought of the kids, of him, etc, but the effects of the chemo were worse than ever and it was all I could take.  Thankfully the lesions had reduced and were stable, 3 months off chemo.  This pattern has continued and I feel as though I am almost back to whatever kind of “normal” I can be.  But here we are again, after the holidays I will be scanned again.  If the lesions are still stable then another 3 months off, if not we will go back to the drawing board.  I am trying to not be worried or nervous, but with all of my positivity and belief that all is well, it is still there in the corner staring at me, waiting for me to crumble so it can work its way back into my body.  However, I know that if the scans do show growth that I am ready to fight again.  Like I say to my children, I will fight again and again and again and I will keep winning.

So, this holiday I will enjoy, just like I have every holiday sick or healthy.  I will make memories with my family, continue traditions, and enjoy every minute that we have because I know more than ever how quickly things can change.  I am sure I will be overwhelmed with getting ready, baking, and wrapping, but I will do it with an abundance of gratitude in my heart.  For there are too many people, this year especially, who are enduring days harder than any of us have had.  So many have lost so much during these times and so many are hanging on to everything by a thread.  The gift of giving back is always part of our holiday traditions, but we will do as much as we can this year.  I wish you all a healthy and happy holiday season filled with love and laughter.  Be in the moment and keep the thought of how precious life is right in your heart and of course…. Make it a GREAT day!!!

11/16/20

As we creep closer to thanksgiving, a truth that verifies that time passes, I find myself giving thanks, recognizing my gratitude, counting my blessings…..whatever you want to call it….that is what I am doing.  It is no different than most days with me, waking and recognizing all that I have to be grateful for, however, I do become more aware of the simple things that bring me joy and that I am forever grateful for.  For me, my gratitude goes first to my higher power for the ability to actually be present, but then my gratitude goes to my body.  My sliced and diced, cancer wielding, always changing body.  You see, of course, our bodies change with age and I know that mine is doing that, while also healing from years of cancer treatments, surgery, more cancer treatments etc.  And so, I am amazed by the gift that it continues to give me.  Over the weekend I was able to participate….virtually….in the Atlanta Peachtree Road Race in honor of my dear friend Joenie Balonie (as I called her).  This is a 10K that is usually done in Atlanta on July 4^th.  Of course, the times have changed gatherings and it was canceled over the summer, only to be promoted online as a virtual race.  My dear friend and I took to the streets on November 14^th with the cool breeze at our back.  Full disclosure here people, it was a wonderful swift walk, nowhere near a run, but I did it!  My legs were tired and I needed to keep my sugars up at one point, but we finished the 10K with smiles on our faces and many good laughs on the trek.  And I thought to myself, only 6 months ago I could not walk around our pool.  For that reason, I am continually giving thanks to my body, its ability to heal, to grow strong and healthy cells, and to battle as hard as I push it when my cells are creeping in the wrong direction.  My legs were a bit tired, but really the rest of me was invigorated!!

Then I shift to my community, my friends, my neighbors.  I am continually amazed by what humans can give to each other.  The ability to help and support each other.  The ability to work together for a greater cause and the willingness to see each person for who they are.  I am guessing that we may not be feeling like that is the case right now with all of the turmoil in our world, but I cling to the truth that we will all realize that by coming together we are stronger. I am ready for us all to remember that it is ok to disagree without hate and that it takes a village to build and move forward.

I wake up with hope and gratitude for all that we as humans do for each other and the knowledge that we are capable of overcoming so much.  And then I recognize the love and gratitude that I have for my family, my children that challenge me to grow and learn things I thought I would never know.  My husband who continually astounds me with his care and love for me, my sisters, and nieces, and parents, my aunts and uncles and cousins, and all of the extended family around the world.  I truly feel their love raining down on me daily, and I give them credit for my healing as well.  You see I am strong, and I am determined, but I am also stronger when I am flanked by those who love.  My cells absorb the love and light and they dance with joy.  No matter where my family is, and right now all of them are far away.  From each corner of the US to the countryside of Italy, from Rome to Wisconsin and Ohio to Switzerland, I embrace their love and am so amazingly grateful for it.

After I thanking my body and my people, I shift to the simple blessings that are bestowed on me every day.  I hope that one of them, the ability to make every day a great day, has swept many that I come in contact with.  You see, this mantra of mine, and there are many ways to say it.  Make it a GREAT day, every day is a GREAT day, have a GREAT day, this is what I am also so unbelievably grateful for.  This way of thinking started way back, I can’t pinpoint it but it has been part of me for most of my life.  Of course, my teenage years were sullen and crabby, but I really think that I still had mostly great days.  Regardless, this feeling, this drive, this mindset has proven to help me in more ways than I ever could have imagined.  Through heartache and loss to the joys of parenting, making a marriage work, and into the throes of a lifelong cancer battle.  It gives me hope and purpose every morning when I wake and give myself the choice of what my day is going to be like.  You see I have embodied it, it is in all of my reactions to what is going on around me, it is in my communications with anyone I interact with, it is part of who I am, not just something that I say.  Because it is within me, it shifts the way that I look at things and most importantly it shifts the way I react to circumstances positive or negative.  It pumps through me just like my blood, giving me life every second of the day.  For these reasons I try and share it, speak it, and encourage it to everyone that crosses my path.  Some take it with a grain of salt and move on and others actually hear it, I remember that I am only in control of myself and what I put into the world, and so I focus on my job.  My goal to support and help others and hopefully bring a smile to their face.

So, you see, gratitude is a special thing.  It helps us remember what we have, what we can give, and how we can choose to spend our day.  So, stretch yourself today and bring your gratitude to someone you don’t know.  It is the small things that we do that can make a huge difference for someone. I know that by spreading kindness it will guarantee that you will have a GREAT day!!!

Make it a GREAT day my peeps.....I know I will!!

10/16/20

When I wake up in the morning I begin looking forward to my morning walk.  They are not quick or long, but they are the proof that slowly but surely my body is healing from the intense rounds of the latest and greatest chemotherapy.   My stride has gotten steadier, and I don’t need to hang on to my walking partner much anymore.  My sports bra is packed with snacks and my phone is always in my hand to monitor my numbers.  Over the past, almost 3 years, I have logged hundreds if not thousands of miles on my precious feet.  When I am in chemo a walk around the pool is about my standard exercise for the day, but as I sink into my chemo break my walks have gotten longer and more enjoyable.

While walking I process.  Everything from the extreme gratitude that I have every day, to the day ahead, to what I am focusing on outside of myself. I confirm that my priorities are comfortable to me and place gratitude at the top of my list daily.  My walks provide me with the counseling that I need on a daily basis, they help me with my acceptance of myself in this new life, and they keep me healthy in my mind and body.  The doctors tell me that they are surprised and impressed with my recent outcomes, the stabilization of the lesions without chemo or surgery and they indicate that I must be doing something right.  I chalk it up to my walks, my meditation, my new outlook on life and just plain luck that I have been given, yet another, chance at life.  That being said living between scans is not easy.  I have not gotten to the place where I am fully confident that all is well, and who knows if I ever will.  I do know that when I am given a few more months off of chemo that my goal is to make the best of it…..and so I walk.

My goal, when I was able, was to walk a 5K per month.  I would love to think that I would be able to run one, but my body is in no shape for that.  Between my hernia, from being sliced open, to my wavering sugars, and low body fat, running is not an option.  However, walking a race is right up my alley.  Next month I will walk the Atlanta Peachtree 10K, with my dear friend in honor of my dear friend, Joeny Balogney, who walks in another life right now.  I am excited and anxious all in the same breath.  It is longer than I have walked in a long time, but I am determined to push through and get it done.  Joen lost her life and I got another shot, she is just one of the many that loose the battle to cancer daily.  I won’t post statistics because the actual numbers are staggering.  So, I walk on, I push on and I make sure that I am enjoying all parts of my life, either challenging or joyful.  You see I have no idea if I will be able to watch the sun rise tomorrow, or feel the cool breeze on my face as I journey through the neighborhood.  I don’t know if I will be able to meet myself on the sidewalk to talk out the day, or if my journey will have ended.  Then again, none of us know, so take a walk and enjoy the day you have been given.  It is a gift, one that should not be passed by!!

Make a great day ….. I know I will!!

10/1/20

What an adventure....Scans showed stable lesions which means 2 more months with NO CHEMO! Keep living your adventure to the fullest....one day at a time....make it a great one!!

9/28/20

Another scan day crept up like the warmth from the sun as it rises, and here we are.  As the scans continue the knowledge that I still have cancer is brought back to my mind, not that I totally forget that it is there, but I strive to live my life fully not letting the fact that I am still in a “fight” with an imposter in my body.  However, now I am feeling really good.  I went on a small getaway with my girlfriends and explored St. Augustine Fl.  Soaked up the history and wondered when I would feel comfortable around people again.  We all were tested prior to going and due to all being negative, headed out for a great weekend, and by golly, that is what we had.  Lots of walking, lots of history, lots of lying around in our mumu’s and lots of laughing.  Just what the doctor ordered! But guess what ??  There were also lots of people doing, I am guessing, the same thing that we were in search of.  Getting out of town for a change of scenery.  That being said, we kept our distance and when we saw too many people we headed in the opposite direction, but it did get me thinking as to when I will feel comfortable again going and doing things.  Many were wearing masks, but many were not.  All of the businesses required masks, some people listened and some did not.  The reality that we will be fighting this virus for quite a long time became even more evident when our governor lifted the regulations, get ready for an increase in numbers people!!  All of that said our time was wonderful and fun and relaxing.  Our meals were enjoyed via take out of in outdoor restaurant gardens with few people, and all of them far away from us. Thankfully, we had an amazing restaurant a block away so our dinner take-outs were delicious and provided a short walk under the stars as well.  All in all, it was a wonderful weekend that made me miss traveling, my daughter, our family trips and so much more.  We will get there again.

If you have not been to St. Augustine it is a beautiful little city, nestled on the east coast of Florida close to Jacksonville.  It is packed with history due to the fact that it is the first settled city in the US, and they have worked hard to keep all of the original buildings in the old town.  During our private history tour, we learned of the wars, the battles, the individuals that settled, and the drive to make the city of St. Augustine the “Newport” of the South.  Henry Flagler built up amazing hotels, shopping centers, casinos, Roman baths, churches, and much more as he enticed the rich to come to play in the city.  The Tiffany windows in the hotel and the gold-lined dome of the church was just one way that he showed his wealth to the world.  The department store that the women shopped at was called “Surprise” and only took a signature from the women that shopped there.  One because they did not have bank accounts and another because they did not carry cash.  The bill that their husbands received when checking out of the hotel would also entail their bill from the store….Surprise!

All of these things got me thinking, I do a lot of that, of how far we have come and how much we are still the same.  It is interesting, right?  As the historian talked about wars that ravaged St. Augustine, all of them were based on religion.  When the French were captured they were asked a question…..” Are you catholic?” and there was only one right answer.  If the answer was “No”, which was their answer because they were not, they were taken behind the sand dunes and their throats were sliced.  The women were spared, but only for a while until they got sick of them or they were low on food, and the same demise came to them as well.  Of course, we are not slicing each other’s throats literally, but our world continues to be ravaged with individuals fighting for or against religion.  It baffles me actually, as an individual who was brought up by parents who encouraged us to explore all faiths.  Of course, when we were with our grandparents we were expected to dress in our best and attend church with them, or to walk in the procession to the church.  This was out of respect for my grandparents and their beliefs and gave me a sense of what religion was for them, but as I grew up I realized that organized religion was not for me.

I wholeheartedly believe in a higher power, a god or goddess, a divine, and I am moved when I am touched by their grace.  My prayers go up every day, morning and night and I have witnessed their power.  I have been given a second chance at life and I credit it to my faith, the prayers of those around the world, and the energy that has been put into the universe by all who love and know me and those that do not know me but are praying for the healing of all people.  I am thankful that I have no fear and I have given that up to my higher power and I am so grateful that I get to live every day with purpose.  My god is everywhere, in my soul, in the trees, in my voice, and in those I love and those I do not know.  I believe that our God loves everyone and does not judge by mistakes or choices that they make, but uses those to teach us all compassion.  I believe that my god accepts all faiths, even if they don’t say the same thing.  I believe that my God loves unconditionally all people, no matter what.  You see when I think of my god there is no other way for that not to be true because my god is all-loving and all-forgiving, non-judgmental, and accepting.

Organized religion may not be for me, but faith, love, compassion, grace, humanity, kindness, and so much more is what drives me every day.  My practice in my faith is what keeps me whole and secure in my belief that I am right where I am supposed to be, no matter what comes next.  More chemo, more surgery, more time off, or no more time at all.  I will continue to pray for the healing of all touched by this new virus, those battling illness, or mental illness, or just struggling.  I will continue to do all I can to support those in need no matter who they are.  I will continue to see people for who they are, not by the color of their skin or by the choices that they have made.  I will continue to give thanks for all that I am blessed with every day, from the little things to the big ones.  What a big beautiful world we live in, it is our job to protect it, cherish it and share it peacefully.

"9/11/20

The morning had started and my classroom was buzzing with life. Singing for our morning group, the children doing their jobs, a small group lesson, a child rumbling around labeling everything he could to practice his reading and writing, silver polishing was a favorite, and 2 children waited patiently as another worked intently, a giggle, a hug, all was wonderful.

The phone rang and Alex (my assistant at the time) answered it, as I glanced up at her I noticed something different in her face, fear seeping in, as though the phone was terrorizing her. I raised my eyebrows and tilted my head as to ask what was wrong, she held the phone out, without even hearing anything, as I moved close to her I told her to take a deep breath, sit on the floor and work quietly with the children. She did so and the children went about their business. I picked up the phone and slowly listened to my friend and colleague explain, with very little details, what had just happened. Deep breaths, keep calm, get to Alex, call Keith call Alicia, these were my thoughts. You see I was an adult, privy of trauma and horrible things throughout my life, and so I went into a mode that as adults we have to go into. You can call it protection, coping, whatever. My first order of business was to protect the children and to get to Alex, I tapped her on the shoulder and she stood up. I gave her a quick hug and quietly explained that we are here, and our job was to protect the children from any fear, therefore we had to put our thoughts and fears away for the time being. She took a deep breath and shifted her brain and body back to the children and the present. I made sure the exterior doors were locked, closed windows, and went about our morning lessons. Calling Keith and Alicia would have to wait. One thing that struck me was how quickly we began to hear sirens. You see we were in South Tampa and sirens were normal, but almost within 30 min of the news, sirens began almost nonstop. Then the classroom phone began ringing off the hook, parents terrified, wanting to pick up their children, me counseling parents to remain calm and remind them that our anxieties will impact the children, the children confused why they were going home, or why they weren’t when everyone else was. We pulled the children together and began to sing some of their favorite songs to ease the unknown. It worked, and it amazed me, that children were soothed and comforted with something so simple. I thought that there is such a blessing in being young and naïve. Call Keith, call Alicia kept running through my head. Just then Keith called and was transferred into my classroom. He confirmed that we were ok, and let me know he was gathering his college team with many who were from the affected area, I knew it was going to be a long day.   Call Alicia. When I finally had a minute, I tucked into the office and called Alicia, the young girl who was carrying our first-born child, Kiara’s birth mother. She was watching the terror on the TV and was in tears, I spoke with her for about 15 min hoping to calm her down and silently praying that the emotional toll didn’t send her running.   Back in the classroom, thankfully our children were back to work and oblivious to what was happening in the outside world. The day went on and I remember thinking what kind of world are we living in and what do we do now?

A day everyone would remember forever, a day of sorrow and heroism like I had never seen before, a day that our country would crush under the loss of so many but also revive to honor them, a day where some thought they were breaking us and driving us down with fear, but then were silenced by our strength and devotion to each other, a day when our country came together to help and heal. And now 19 years later, we all still stand together for those we lost that day, and are challenged to stand together again in solidarity and healing for our country. Although we were not bombed, our country has endured the terror of disease, natural disasters, and political divide. My hope is that once again we can come together to heal and move forward.

9.11.2001

I woke up and got myself ready for the day, comfortable clothing, always a sweater or sweatshirt, as I got dressed Keith gathered the notebook, water bottles, and a snack. As we loaded into the car he tossed a blanket on me, I was/am always cold. The kids were off at school and the emergency contacts were confirmed before we got on the road, just in case. My parents, Keith, and I loaded up to started to head to Tampa. We talked all the way there, I don’t remember about what, but I can guess it had to do with being sick, possible treatment, how I was, are you cold Mara? are you comfortable Mara? traffic…..nothing to earth-shattering. Maybe that was because we knew that once we arrived that we would receive earth-shattering news. You see I had been out of the hospital for 8 days, and no one could really figure out what the large mass residing in my abdomen was. Yes, we figured it was cancer, but it had not been spoken yet (besides the crazy doctor who came into my hospital room who told me I had Lymphoma).

Packed highway, packed parking lot, packed waiting room, once again I was flabbergasted at how many people were seared with the disease. After a long wait, we were shuffled into a small room. It had a patient's table, 2 chairs, a small desk, a screen, and one cabinet. My parents took the chairs, I sat on the table and Keith stood next to me. The surgeon was first, his arms crossed and eyes down, he quickly told us there was nothing he could do, and if he could do anything I would not have any quality of life. The oncologist was next, she quickly said that they would “try” chemotherapy, but she did not sound very optimistic at all. 2 different poisons, 4 days a week, 8 hours a day. Hell was handed out that day. She was off and her assistant answered questions and gave info. We all sat a bit in shock, that being said, I did not feel any fear or hopelessness. I felt like I was in for the fight of my life, and I decided right there and then that I would do everything and anything in my power to win my battle and continue my wonderful life.

9.11.2018

I woke up this morning with my heart filled with gratitude, thanking the universe, and the divine power that has provided me strength, courage, and has taken away my fear. Being on a chemo break is glorious. I smiled as I was able to make Keith breakfast, pack his lunch, and send him off with a hot cup of coffee, all of it done without needing to take a break or sit down! After I sat and thought about how lucky and blessed I am. The pull of the computer was already in my hands when I woke, but I took the time that I needed to do my breathing and praying. Slowly, as the morning progressed the desire to write filled my whole self. So much has shifted over the years of my life, so many challenges, heartaches, joys, and blessings. To think that I have had the privilege of having this big beautiful life fills me up every time I stop to think about it. I look to the past and recognize that all of my challenges have made me the person that I am today, and I look to the future and hope that what comes next will continue to push me to grow in ways that I cannot imagine at this moment.

I sit with the present, knowing that this is all I have, realizing that everything can change in a split second, and making sure that I don’t take that for granted. When unspeakable things happen to us we have a choice, we can rise up and meet the challenge with courage and compassion or we can be defeated, we can let the unspeakable mold who we are to become, or we can let it dissolve us to nothing, we can wrap our arms tight around the unspeakable and take from it all that it has to give or we can wrap our arms tight around ourselves closing it out and not learning from it. I hope that you all embrace your day fiercely, whatever it may bring, I hope that the peace and calm, heartaches and trauma, unthinkable and blessings that are erupting all around the world come together in some way to heal us all in ways we never thought possible.

My wish is for all people to realize their capabilities and for us to all have peace. I know it is a big wish, but I heard once to Dream big and pray bold ….. and so that is what I intend to do!

9.11.2020”

9/1/20

Two years ago, at this moment I was in the ER at Manatee Memorial Hospital in Bradenton, FL. I am amazed at how time flies. I am in awe of what the past two years held for myself, my family, and our world.

I am grateful that I woke up this morning and am able to write my reflections and thoughts. After my walk this morning I read most of my writings from the past 2 years and wow, I have written a lot! While I read and remembered, I gave thanks for the ability to have the gift of gab. I give thanks for the trauma and the healing and I give thanks that I am able to share my story.

That all being said, I am tired.

I am tired of not being able to touch or hug anyone. I am tired of having to stand far away from my friends and colleagues. I am tired of watching the news and seeing the state of our world. I am tired of not being able to run or jump. I am tired of thinking, “what if it starts to grow again?”

Feeling sorry for myself is not my style so, I guess I am again processing what I am living with. You would think that living with terminal cancer would be difficult, and for so many I am sure it is. However, right now I am feeling good and somewhat “healthy” so there is also confusion: how can I feel ok and still have cancer?  Well, I have come to realize that it always goes back to my choice and what I want and setting it right in my mind.

So as tired as I am I reach for the beauty around me. I soak up the sun early in the morning before it makes my skin itch un-relentlessly. I fill my body with good food and make lemonade out of lemons. Always. I release my frustration and exhaustion with the state of the world and look towards action, and I use my energy to help others and to build strength in myself. Some days it is easier than others, but when I recall where I was two years or one year ago, I wonder about what will come next. I once again tell myself, that none of that matters. What matters is the here and now, the today and this moment, and then I smile.

I figure I am doing OK, I have beat cancer twice now. I am living with multiple health risks in a world that is fighting a pandemic, and my family is healthy and safe. My heart is full.

I hope that this holiday weekend you will push yourself to stay in the moment and enjoy what is right in front of you letting go of what happened at work this week, or what is to come next. If only for a short time, recognizing the present is huge and healing. I will continue to do the same. I only have one exception – travelling. It is always good to look into the future and plan to travel and explore. This is something that I am really tired of not doing.  So, you guessed it, I am determined to travel sooner than later!

As my papa said all of the time…

“Ooh la la”

Make it a GREAT day…..I know I will!

8/15/20

“So it has been 48 hours since we left Kiara in Tallahassee. When I walk by her room the emptiness screams at me. I check my phone regularly waiting to see if she has texted or called. I wonder what she is doing and if she is okay. I am not worrying, I am just settling into the new way of life for the three of us and hoping that she is settling into her independence and new college world. It brings to the surface that next it will be Alessandro and then we will just be the two of us, back to the beginning.

This time reminds me of when our world was a family of one child. When Kiara was born, Keith and I were so excited, overwhelmed, and happy. You see, I think in the beginning when couples decide to have children that we really don’t think of what comes at the end. By end I mean, when they leave, which comes sooner than can be imagined. Of course, we talk about it, save for it, and even push our children to think about it when they are just trying to enjoy being a kid. “What do you want to be when you grow up?” or, when they are playing doctor or debating with us we slide into these messages, “Oh a doctor is a good career” or “You are a great debater, you should be a lawyer,” when all they really are doing is playing with no regard for what is coming next. The living with abandon way of childhood is a gift, one that as we get older we long for. We spend so much time wanting to grow up when we are young that when we get older we want to be young again. But the life style of childhood is what we all should reach for, the free spirit of being able to speak our mind without wondering what people will think, to run half-dressed around the house and not be worried about our body, to sing out loud any made up song. To cry without choking it back, to throw a temper tantrum when angry and then to calm ourselves by something as simple as a hug from a sibling or parent. When we were children the world was wide open and all we wanted to do was to explore it. So, as I move further and further away from childhood I somehow find myself drawn closer and closer to the things that made it so wonderful.

I no longer care if my opinion doesn’t fall in line with yours. I don’t say “yes” just to please someone, I sing a lot‑-made up songs, real songs, and none of them on key. I dig in the dirt and ride my bike in circles (when I feel strong enough) and take lots of walks, even if they make me itchy and hot. I jump in the pool and float around. All in all, I am enjoying my days. You see, in this world of unknowns it is important to embrace the things that make us happy regardless of what we think is coming the next day, because we really don’t know.

As we were dropping off Kiara, I found myself throwing in all of the life lessons that I could. Reminders such as reach out to your professors if you need them, don’t ever take a drink from someone or put your drink down, don’t walk anywhere alone, never get into an Uber unless you confirm it is the right one, study hard, make good friends, check your mailbox, keep your room clean, and on and on. She stopped me at one point and said “Mom, I am so glad you did not die. Who would have told me all of these things?” She said it in typical Kiara voice, a bit sarcastic, but also with some truth to it. This led to me say, “Honey….we are all going to die and we have no idea when that will happen.” Her eyes filled up with tears and she quickly said, “I know – but at least I have all of the life lessons checked off.”  It got me thinking. Did we teach her enough? Will she make it?

I think she will do great, but more than that I hope that she is true to herself. I hope that she feels strong enough to speak her mind no matter what. I want her to feel brave and curious and excited just like when she was a little girl.

Children grow up fast. Mine have had to grow up a bit faster because of our situation. I can’t change that. It is just what it is. So we will continue to experience the unknown, to embrace the moment, and to live as fully as we can knowing that at a drop of a hat things can change all over again. Life is good, living is better!”

7/30/20

When I wake up more grateful for life than I was the day before I wonder how that happens. No, really. I live my life full of gratitude and appreciation.  When I walk I notice the leaves and the clouds and listen intently for the different birds. When I breathe I focus on what the breath feels like in my body, I search for any pain or uncomfortable feeling, because any of that could mean something very different for me than it would mean for you. So how is it that when I opened my eyes this morning I felt even more grateful?

Of course, it is because it was scan week.  Yes, July 28^th came, the last day of my two-month chemo break. So, it’s scan day. The results of the scans would dictate what is next for me and my fight.  Sleep didn’t come easy on the night of the 27^th. No amount of praying, meditating, and breathing seemed to help with the thoughts running through my mind, which had taken over. You see even when I know what the outcome would be (more chemo) the reality of it is still not pleasant. I have been able to have my scans local due to the global pandemic, which is nice, but the pandemic has also stolen patients' support persons. No one is allowed to accompany the patient, so that means you are sitting in a waiting room by yourself, drinking nasty barium by yourself, and waiting alone for results that may change your life.

As I sit in the waiting room, I realize how grateful I am. You see although I am sick, I am not sick right now. I feel good. My head is topped with chemo fuzz hair and although my eyes are still hollowed out, my skin is looking a bit better. Looking around, I see individuals beat down by chemotherapy, or those waiting for news that they don’t know how to stomach. If you read my posts, you know that I talk to everyone, but with the pandemic, everything is different. A protective covering muffles my voice, we are at least 6 feet away from each other and any interaction is discouraged. All of these things increase the feeling of being alone.

So, I smile with my eyes at the elderly woman breathing with an oxygen tank and walking with a walker. I nod my head at the young woman who eyes are filled with fear, and I breathe to calm myself as I chug down yet another bottle of nastiness.

When I am called to get my scan the man begins to rattle down the list of questions. I listen and answer, and then I tell him “this is not my first rodeo.” We both chuckle and he asks me how many scans I have had in the last 12 months.

I stop. I can’t give him a number. He looks at me and offers up 2? I think again. The last 12 months?” I ask, and begin to think about it. December, January, March, April, June and now July. I typically have a CT and a MRI, and I had additional scans due to complications so the number that I tell him is 11. He tries to hide his surprise by simply saying “Oh, okay. I guess this is not your first rodeo.”

The scan went off without a hitch. Now to wait. Thankfully a text came late on the 28^th from my favorite oncologist ever. Brian texted me: “ Your scans are GOOD!”

My heart stops, I take a deep breath, slowly tears roll down my cheeks and I begin to jump up and down. I shake my fists at my sides and I cry and cry and cry and cry and cry. I text Brian back, “like good good or just good?” His response is “good good like more time off chemo.”

It was like I was in a speeding car with no brakes and just before it was about to fly off a cliff the brakes started to work. I came to a screeching stop and joy and fear and gratefulness and relief flooded my body. By the way, flying off the cliff would have been fine too. I like heights and I have always loved to fly, hang glide, and jump out of planes. That being said, keeping my feet on the ground and getting to walk another day without the poison pumping through my veins is a wonderful feeling.

I met with Brian yesterday.  He reviewed my scans and we went over each lesion that is in my body, the remnants of cancer hanging on ready to take over at any minute. They are there, a few even a bit smaller than they were before, but none of them had grown. They are all stable.  Which means more time off of chemo, and then of course more…you’ve got it...scans.  I pushed for 3 months off of chemo. He told me 2.  I will take it.

I will ride this wind or whatever you want to call it for as long as I can loving my life and living it to the fullest. Yes, right now that means isolating and social distancing from everyone, but I will take it. I will enjoy it. I will embrace it. I will move Kiara into college without feeling like crap, I will help Alessandro set up for on line school in August. I will be able to make my hubby coffee before he walks out the door to work. I am good and that is the way I plan to stay for as long as the wind will carry me!

Remember to make it a GREAT day… truly…it really is a GREAT day!!

7/16/20

When I think of my life I am quite amazed.  Not because of what I have accomplished, where I have been, where I am right now, or where I am going. I am amazed simply at life itself. The pure ability to live, to walk, to breathe, to see, to touch, to feel, and just to be. I am guessing that everyone is feeling a bit shifted during this time, or I can hope you are. I personally have had some time to sit and just do nothing, which if you know me is not easy. That being said I am trying to embrace it and when it comes my way I try to focus on just the pure gift I have to be able to do some of what I am guessing most people consider easy.

As I continue to have days off of chemo, I slowly am getting stronger.  I guess it is easier for me to sit and do nothing when I am drained from the poison pumping through my veins, so now as my veins take a break I work hard to make sure that I too stop and take a break. If you were to talk to Keith, he would disagree with me, he is constantly telling me to lie down, stop working, take a break. I explain to him that when I feel good I want to do as much as possible. I see the fear in his face as he tells me that he just wants me to rest. We both know what could possibly come our way again and neither of us likes it very much.

I enjoy life and I strive to make memories so that the next time I am down my children and husband have something to reference rather than me just being in bed or on the couch.

One of the things that I find myself thinking about when I am forcing myself to take a break is the milestones of our lives. We all have them, and I am guessing that they are different for everyone. When I was young I dreamed of traveling, getting married, and having children. Now that those milestones are behind me I look at my children. I waited, not so patiently, for them to take their first step, and then as they ran circles around me, I wished they would sit still again. I took pictures of them on their first day of Kindergarten, watched them learn to swim, picked out dresses for dances, sat on the sidelines of soccer games, and watched them both grow and grow.

A big milestone is upon us now and I am finding that I am ready, but not ready at the same time. Kiara will leave for college in 22 days. We are proud and amazed at the strong young woman she is and excited about the next step for her. When I was diagnosed, all I could think about was, I have to make it to get Kiara through high school and Alessandro through middle school.  Milestones. Well, here we are, one down, one to go. However, now that I am here I’m looking towards the future. I don’t plan on going anywhere soon and I find myself writing more milestones in my mind.  Celebrate our 25^th wedding anniversary. Get Alessandro through high school and watch Kiara graduate from college. Get back to Italy with my family.

In a few weeks, I will have another set of scans, if the liver metastasis has stayed stable then I get another 2 months off of chemo. If they have increased in size then we go back to chemotherapy. Thankfully, I have doctors that consider my quality of life first and foremost, so chemotherapy (if needed) will be started after I move my firstborn into Florida State University.

How in the world will I say goodbye to Kiara?

This is what I struggle with, that monkey at the back of my mind tempting me with the worst scenario. It is a struggle that I will always win. I will say goodbye with all of my heart, knowing that she is strong and brave and that regardless of my outcomes, our journey has taught us all something. To live each day to the fullest because regardless of cancer or just life itself, we have no idea what comes next. Live life in amazement, the gifts we are given daily are something to be cherished!

As my papa said while looking at his grandkids, watching his wife garden, watching the sunset, sailing on the lake, or just watching everyone……

Oooooh la la ….. life is good!

xoxo

6/20/20

Sometimes the waiting is the hardest part about the journey, no matter what your journey may be.  That being said, the waiting forces you to grow and accept things that you might not have been able to while the journey was plowing ahead.  I find that to be true for me, and as I reflect back on my life, I realize that the times that I am stuck in limbo are the times are the times that make me stronger and force me to accept things or look at things differently.

So, as it goes, my journey continues, and the waiting has been what I have been doing for the past 2 weeks.  Once again, due to the virus, I had my scans done locally. After the scans are done everything gets sent to MDA, sounds easy right? Well this process is a bit more complicated due to the virus as well.  The mail at MDA has to be cleaned and inspected and takes way longer than usual to get to the indicated offices, this making the wait a bit longer.  Once my doctors received everything they set up video visits and my anticipation of what was next was mounting.  Like I have said before, I have leaned towards surgery for many reasons.  The first being that the cancer would be out of my body and I would be able to move on.  The second being that I really don’t like chemotherapy.

My lead surgeon referred me to the liver specialist who is familiar with my case.  He had to be in my surgery (last year) to keep my liver alive while they reconstructed my portal vein, so we have met before.  After meeting with my oncologist, the good news came…..the lesions were even smaller, and he was leaving the next step to the surgeons, but he always needs to have a plan B so we discussed how chemo was going.  I shared that I was struggling with the chemo, he came up with a plan to drop the Taxotere and continue with just the single agent Gemzar if surgery is not an option.  Then we moved on to talking to Dr. Roland, my sarcoma surgeon, she again shared that the lesions are smaller and that she had forwarded the scans to Dr. Alioa, the liver specialist.

More waiting…..

Finally, when we had our video visit with Dr. Alioa, he was honest and kind.  He explained that yes, the lesions were smaller and even so small that he had a hard time finding one of them.  He also recognized that I probably wanted surgery to have the cancer removed, but then he indicated that it was not an option now.  He reminded me of the “gigantic” surgery that my body just endured a little more than a year ago, he shared that when you undergo such a surgery your body takes a long time to heal and the potential for infection is too much of a risk.  The risk is increased by the fact that I am missing so many organs, and some kind of valve (I don’t know the name of it). This valve’s job is to keep bacteria out of the liver, and I do not have it anymore.  Thankfully, because I am able to drink and eat and move, the bacteria flows through my liver and has not posed a problem, however, he indicated that if they do surgery the risk of infection rises to over 50%.  At first, I thought, well 50/50 chance, I’ve done that before, but Dr.Aloia was quick to let me know that the risk of an abscessed liver could be fatal, and that I am winning right now with chemo, therefore he is unwilling to risk my life.  It was not what I thought I wanted to hear, but as Keith and I sat and processed the meeting, we agreed that I am winning, that the chemo is obviously working and that it is best to continue until I cannot handle it anymore.  It hit me …..again…..this is my life.

Thankfully when I spoke to Brian, my local oncologist, he agreed with what the doctors had said, however he indicated that my body needed a break.  You see, he is the one that sees me every week, the one that has been trying to give me relief from the random swelling that my body has been doing, the one that tweaks my chemo dose when my weight is dipping and the one who always makes me feel better when I text him on the weekend with a random concern.  Pain shooting down my left leg, my left arm swelling up, pain in my back….whatever….he is the one who is there.  So, when he indicated that I get a break, I could breathe again.  We will do scans on July 28^th and see how the lesions are, if there is growth we will go back to chemo, if there is not then I can have more time off.

Like I said….this is my life. He did say that a break is an option because the lesions are so small and he feels that my body will benefit from a break.

So, as I get my strength back, and gain some weight, I will wrap my head around enjoying as much as I can.  I get to help Kiara get ready for college, watch my boy grow even more and hang out with my hubby.  I am looking forward to not feeling so tired that I can’t get up, or so yucky that I don’t want to eat.  Slowly my fingers and toes will be able to feel things again, and if I am lucky the swelling that I wake up with every day will begin to decrease.  You should see my face in the morning….looks like I just got out of the boxing ring!  Slowly I will get back to my “new normal”.  The funny question that people ask me is …. “How are you doing?”  Of course, I answer with “I am good” because I am, but if I was to really think about all of the ways that “good” is different now than before I bet those people would not think that I am good.  But here is the way I see it, I am here, and I am enjoying and loving and able to do some things…..and this is good.

So, I will continue to have good days, and embrace the fact that I have a respite from chemo.  I hope that you and yours recognize what your “good” is and maybe even turn it into GREAT!

Looking forward to not feeling so tired that I can’t get up, or so yucky that I don’t want to eat.  Slowly my fingers and toes will be able to feel things again, and if I am lucky the swelling that I wake up with every day will begin to decrease.  You should see my face in the morning….looks like I just got out of the boxing ring!  Slowly I will get back to my “new normal”.  The funny question that people ask me is …. “How are you doing?”  Of course, I answer with “I am good” because I am, but if I was to really think about all of the ways that “good” is different now than before I bet those people would not think that I am good.  But here is the way I see it, I am here, and I am enjoying and loving and able to do some things…..and this is good.

So, I will continue to have good days, and embrace the fact that I have a respite from chemo.  I hope that you and yours recognize what your “good” is and maybe even turn it into GREAT!

6/6/20

What would you do with borrowed time? When I woke this morning, I reminded myself to give thanks for today.  With all of the turmoil in our world right now I have been waking up with a heavy heart and a mind full of thoughts.  I reminded myself that today is not a given, especially for me, I am lucky to be here.

Sometimes I refer to it as “borrowed time” or “gifted time”.  Not that I don’t deserve it, I fought hard to get to enjoy this time, but when you look at the past 2 years, not many doctors believed that I would still be here.  So here I am, and as I continue to isolate myself, due to my chance of becoming ill, I have to be honest I am getting pretty sick of not being able to “do” anything.  So that got me thinking, what will I “do” with my borrowed time???

My goal is to keep moving in a forward direction, to continue to live with hope in my heart, to be positive, and to laugh as much as possible.  I want to continue to teach my children and touch as many people as I can, hoping to empower them to see the world in a different way.  I want to support those in need, be a shoulder to cry on, and cherish my friendships near and far.  I want to cook with my momma, organize my garage with my daddy, take walks with my husband, and zoom as much as I can with my sisters and family.  I want to write, and swim and ride a bike, I want to drink tea, and watch the rain.  I want to enjoy sunsets, go fishing, watch funny movies, and plant flowers.  The list goes on and on.  So, this is what I will strive for, just making my days GREAT.

As far as my battle, it will continue.  The liver specialist is reviewing my scans that were done last week to see if I am a candidate for surgery.  If I am great, if not it will be back to chemo.  When I was talking to my oncologist in Houston he asked me the dreaded question…..”How are you tolerating the chemo?”  I was honest with him that that the last 2 rounds had been difficult.  He indicated that if surgery was not an option and we went back to chemo that he could tweak the dosage and the mixture, as he was talking about it, it hit me, this is my life.  I may be on chemo until my body cannot take it anymore.  The loss of what my life was before swept over me like a freezing cold bucket of water, shocking me into reality.  I was angry and scared and raw, I still am.  It has taken a couple of days to wrap my head around what could be potentially next.  Then I wake up remembering that I am in overtime, time gifted to me by my strength, family, love, faith and my community.  So regardless of what comes next, I will embrace it and remember how grateful I am to be here.  I will continue to write my list of things that I want to do and I will take every opportunity I can to live my life to the fullest.  I hope you do the same, you see, when we have our health we don’t fully appreciate it, at least I didn’t, so I am asking you to give thanks for your health, your opportunities and your gifts, because as we all know much better today than we did 6 months ago, everything can change in a moment.

Enjoy your moments, and make every day a GREAT day!!

xoxo

5/30/20

Yesterday I met with my local oncologist Brian Berry.  He indicated that the follow up scans that I had this week showed that my lesions are continuing to decrease.  He said that he is hopeful that MD Anderson will think that it is enough to move forward with either liver therapy, which could be a number of ways to eradicate the remainder of the small spots (all surgery, but nothing like I had before) or a break from chemotherapy. I know that next week when I meet with my MD Anderson doctors via telehealth that they will have a plan that will get me to the next phase of whatever is to come.

When you put your life in the hands of doctors you have to have a lot of trust with who you choose to care for you.  From the beginning Brian has been my advocate and strength when it comes to this.  Yes, it helped that I knew him prior, but what I have noticed is that he is one of the smartest people I know.  I have said this before and I have told him many times, but when you are battling a disease that typically takes years off of your life it is so imperative to trust who is fighting by your side.

I am glad that the lesions are smaller, and so grateful that I have this week and next week (for sure) to get stronger.  I am not worried about what is to come next, I just want to get going with whatever it is, so I can get on with my life, but then I remind myself to slow down.  Right now, is where I am, and regardless of what my doctors have planned for me, it may or may not happen, because today is all I have.  It is a hard concept to embrace when you ache so strongly for something to come.  Too feel better, to be able to do more.  Last weekend my body was depleted, I couldn’t stand on my own and my mind took control.  I felt helpless and therefore I let the hopelessness creep in.  I didn’t want to do anything and I found myself crying a lot.  I tell myself it is important to cry, I have to mourn all I that I have lost, but this was not that.  This was just crying to release all of the exhaustion and frustration with my treatments.  After a good bit of crying I began to remind myself that there are many out there that are suffering more than I.  I reminded myself that even though I was weak and depleted and emotionally raw, that I woke up and I have the ability to still hear the birds.  So slowly, I returned to my reality of working extremely hard to live in the moment and embrace the time that I am given.

 I am amazed how our bodies heal and recover, today I got out of bed on my own, am able to eat and am going to go on a walk, albeit only be around the block, with a friend, I am still able to do it.  My eyes, hands, and feet are battling the seep of the chemicals coming out of my body, but I can FEEL it, and that is a blessing.  No, it doesn’t feel good, and my sight is horrible, but I am strong enough to recognize it all.  So, it brings me to when is enough enough??? I have talked to many people who stop chemotherapy and rely on diet and or faith, many of them make it and many of them, don’t.  I wonder if they would have made it if they would have continued therapy.  Who is to know.  What I know is that by striving to stay in the present, and connected with my god, will hopefully help me see when enough is enough.  My hope is that whatever comes next gives me and my family a long break from my disease and fighting so hard.  There are so many things I am looking forward to doing.  Moving Kiara into college, helping Alessandro tackle 8^th grade, family trips, spending time with Keith, traveling, sitting on the beach, going kayaking, watching the birds…..the list goes on and on.

So today, I will enjoy watching our country launch the first rocket with humans on board in 9 years, I will pray that tonight when the sun goes down that some of our major cities have peace, I will recognize that because I am white I am privileged, I will pray for all of the African American boys that I have watched grow up, I will enjoy a wonderful dinner, listen to music and maybe just maybe treat myself to an ice cream.  You see these are the blessings I have been gifted with today.  I hope that all of you can recognize the small blessings and the big ones too, we are soooo lucky.

Happy Saturday!!

5/27/20

As some of you may know I was born and raised in the inner city of Milwaukee, WI.  When I say inner city, I mean real inner city.  Like the neighborhoods where you may have gotten lost in a big city, and you are nervous to stop at a gas station to ask for directions…..this is where I lived.  Guess what…..although a bit scary at times, it was my home, and I loved it.

My dad was a Montessori teacher and my mother was a stay at home mom.  We got by on a small salary and the homemade bread that my mother made from scratch every week.  We did not eat out, we did not waste anything, we did not spend money unless we had it, we celebrated when my parents made their last payment on our home, and when we owned our first van.  We lived in a neighborhood where we were the minority and we all lifted each other up, no matter what your color, I never heard my parents talk about the color of people’s skin, I only heard about how to treat humans.  I learned at a young age that you need to walk with confidence and believe in yourself.  I was taught that if I was willing to work hard that I could reach my goals.  There was no instant gratification, no amazon, no sprinklers in our yard.

The money that my parents made went to three things, taking care of our family, taking care of other families and traveling.  You see the community that we lived in although riddled with violence, was a tight one.  The families rallied together to support someone when they were sick or if one lost their job.  So even though we had very little, my parents’ goal was to always support those around them.  Although we were the minority, it was also apparent that we were the lucky ones, we did not have to duck away or lift our hands up when the police drove down our streets.  Mind you, it did not happen often as they stayed away, but when someone called in a fight or a drug deal in the apartment complex across the street they would respond.

Aletra was my dear friend and neighbor.  Her, her brother and their mother lived in the house on the corner of 27^thand Juneau.  A hot corner for turning tricks and selling drugs, I lived in the next house.  Aletra and I used to watch deals going down from her bedroom window.  I don’t remember her mom being home that much because she was always working, but I do remember her telling her son to not leave the house unless he absolutely had to.  “I am not working my ass off for you to be shot in the road” she would say while going to her multiple jobs.  I remember not thinking much of it, but then thinking way too much of it.  Aletra and I would practice dance moves, dress up, do art and practice hand shakes.

As we grew into adolescents and went to high school, we had a conversation about color.  It has been years and I don’t know how I am even remembering it now or why but she was doing my hair and we were talking about parties.  She let me know that there was a “house” party happening and that we were going to go.  I laughed, first of all my parents were strict, like kind of crazy strict.  There was no way that I was going to be able to go to a party, and if so I would have to be home by 9!  So we devised a plan….I would sleep over at her house, her mom worked the night shift that night so we would be able to jump on the bus (yes a city bus) and go to the party.  It was set….and my hair was looking pretty good too.  All of the sudden Aletra stopped but tightened her grip on my hair.  “ Mara….it is like a real “house” party….so you have to be cool”  I sensed something different in her words as she said them “Ummmm….ok….how do I do that?”  She loosened her grip and finished the braid, walked over to her tape recorder and put on some dance music and said we had some work to do.  The next comment Aletra made was “ you know you will be the only white person there right?”  I responded with “So…I am always the only white person”  Aletra smiled a little and said “ You will see”

I remember the party, but not how we got there, I do think we took the bus there but got a ride home.  Aletra would remember what we wore, but I sure don’t.  But I do remember this…..when we walked up the block to the party the music was bursting out of the windows, people over flowed the lawn and the sidewalk, laughter and handshakes were popping here and there…..and guess what everyone was black. Now as I said earlier that we were the minority in our neighborhood so I was used to it, however I had other white faces in the crowd in my neighborhood.  This party was different, I was the only one. Just as Aletra said….I saw…it felt different.   I remembered what my daddy taught me….always walk with confidence and I straightened my back.  I heard the giggles and jabs as we walked past groups of people to get into the party, Aletra hooked her arm with mine and we walked in.  She waved to a friend and we were in the thick of the party bobbing and dodging around sweaty dancers and drinkers.  Once we got to her group of friends she introduced me…..

“This is Mara!”  Her voice was filled with what I knew my friend to be full of ….. confidence and kindness.  They all looked me up and down …. For more time than I would have ever wanted them to…but one of them finally said ….. “Hey Mara….welcome to the party”.  After that I could breathe a little.  I nodded and looked around at the sea of black faces smiling and having fun.  I was the minority, we all ate the same thing, lived in the same neighborhood and had the same blood, I remember wondering why we lived in a world that still saw color.

The night went on and we danced and laughed, Aletra and I did not drink, that was one of our rules, one that she made. “You don’t drink at parties because drinking makes you do stupid shit that you can’t take back….and you can’t run fast” I didn’t know what drinking did because I had not done it much, but I believed and trusted Aletra.  You see she knew more than me in our same amount of years.  The lessons that she had to learn because of her skin color made her, in my eyes, smarter and more confident than ever.  I, of course, would not realize this till years later after we had lost contact.  I do know that she took that knowledge and went to college and then on to medical school and that she is a doctor somewhere.  I imagine that she is compassionate and caring and tough and one of the best in her field.  She taught me a lot of lessons growing up, some that I strive to teach my own children.

Now as I battle cancer and try to avoid COVID-19 my biggest job is raising my adolescents (mind you not a fun job 90% of the time).  Is it possible that Keith and I have taught them all of the lessons that we learned growing up?  As I look around I recognize that my children do not want for anything, this is partly because of being only grandchildren and niece and nephew on one side of the family, partly guilt from having a shit show of a situation with their mother having cancer for so long and partly just the reality that our world is a different place now.  That being said, they have to save their own money to purchase things, help around the house, do well in school blah blah blah……

Although we have raised our children in a predominately white community, I do have one thing that I am extremely proud of, they see no color, but recognize the struggles of those who are of color.  They treat humans as humans.

So now here comes the kicker, when Alessandro walked out of his room last night and was putting me to bed, yes you heard me, he gets me up off of the couch, takes me to our room gets the bed turned down for me and makes sure I have my medicine and water….gotta love a son.  Ok back to it….he walked in and I could tell he was upset, he is my emotional one.  Tears were welling up in his eyes, I hugged him and asked what was going on, “Mom I just saw a video of a police officer kneeling on a man….and he couldn’t breathe and he died”.  Ahhhh the joys of social media getting something so impactful to my child before I had the ability to talk to him about it.  I was struck first by the fact that he did not see color, just humans, and oh so grateful for that, but then I wanted him to see color…..I wanted him to understand that unfortunately the color of your skin affects the way that some people see and treat you.  I held him and asked if he wanted to talk about it, he had a few questions…..

“Why would someone do that?”  I answered honestly, I did not think that the police officer intentionally did it, however I did believe that the amount of force he used was not appropriate and that I hoped that the officer was reprimanded and charged quickly.

“What if he was someone’s dad?” I told him that for sure I knew that he was someone’s son, someone’s friend, and possibly someone’s dad, and that he was a human being to be treated as such.

We talked briefly and I began to listen to his thoughts and say to myself, I remember as a kid, the segregation and racism that I didn’t fully recognize because I was in the middle of it, is it really true that we are still battling this? And then I hear my answer…..yes we are, and I think it may be more now than ever.

I remember a MLK saying…..”the time is always right to do what is right “

So I will take my day in stride in this time where we are losing so much to the virus, numbers in Florida are rising daily, social media is flooded with our countries battle against racism and human beings are treating each other as lesser human beings for either wearing a mask or not.  I will always do what I believe is right, and I will teach my children to do so as well.  Although they both stay in their rooms, eat me out of house and home and rarely do anything I ask them to do the first time, I will revel in the fact that I know that they have strong moral compasses, will always do right and will fight for what they believe in.  Our youth is our hope and future and I am thinking we have a lot of work to do…

So go out and make it a GREAT day….always do what is right and treat all humans as equals.  And if you get a chance to have an impact on our youth… teach away my friend ….. for you see teachers are the guiding light and hope for our kids, they are our support system parents…teaching our children all of the lessons we strive to teach as well… I think we all have recognized that more than ever during this time

xoxo

Mara and "best Momma EVER"

There is something to be said about embracing your moments, all of them no matter what they are.  I have to say some of my moments today have sucked.  I have a weird pain in my left leg, they did a sonogram and ruled out a blood clot so that’s good, if it continues I will have a scan on my back to rule out pinched nerve etc....of course when your battling cancer the first thought you have is “is it more cancer?” On top of that I had another dose of chemo today so I’m feeling pretty crappy, and my hands and feet HURT!!!

But then I breathe and remind myself that I just have right now no matter what is happening so I decide to enjoy my moments...I smile and look at things in a positive way.  As my sweet hubby makes 3 dinners, something different for each child as well warm up the tasty riced cauliflower and mushroom risotto my momma made for us (soooo goood)... are you still stuck in the fact that my husband made dinner for our 13 and 18 year old...and mind you something different for each child....yeah me too....I told him he was crazy ...and what the hell are you doing??
“ Honey....what else do I have to do right now? Plus Kiara will be gone soon” kindness seeps from his soul...I love that man!

So I lie on the couch as Alessandro dotes over me getting me anything I need and Kiara gives me a (long) fashion show from her closet as she decides what clothes to keep and what to get rid of.  So you see...amongst the shit show of my reality right now I choose to see only the positive , the beauty, the strong and most importantly the good....oh yeah throw in ton of laughs and I think it’s been yet another GREAT day!

Hope you all are finding ways to make your day great as well as someone else’s!!

Death is something that I have thought about while fighting cancer, you try not to but it is inevitable.  When I was diagnosed and given the grim news that I probably would not live that long, Keith and I began to make sure we had all of our documents “sorted”.  Of course, as we get older these are things we do anyway, but when you are living with cancer it is different.  So, if I am being truthful, over the past few years it has occupied my brain more than I would like to admit. As I have said before, I have no fear of death or what is to come next, but I sure don’t plan on going anywhere, and I hope I am not welcoming death at any time soon.  I believe strongly that things happen for a reason, that there is a plan for all of us, and what I know is that when it is my time….. then I will be ready.

However, death is all around us now, with the virus continuing to spread and some states opening up, I am a bit more nervous about death. I have been isolated for the past 3 months, and my family and I take extreme measures to make sure that we are beyond cautious, and if we are lucky we will all stay healthy during this crazy time.

I am not upset at those that want to go to the beach, go grab a meal, or stop by the local Target to pick up some essentials, this is their choice, and trust me I would love to be on the beach with some friends. Unfortunately, I am one that will for sure have a very difficult time fighting off the virus, and could be affected, therefore my stay at home days will continue.

As we know, some people will follow the rules and others will not, and this got me thinking about one thing that has struck me lately. When I am reading articles or watching the news I am amazed by the lack of our countries “for the common good”.  My mom said it very well today as we talked about it.  You see, our grandparents lived through World War 2, the depression and other struggles.  What if people decided to turn on their lights at night during the war? What if while you were picking up your rations of food you decided to take more than was allotted?  There was a respect for the “common good of all people”.  We trusted our officers, didn’t scream in their faces, we watched out for each other and supported one another.  I am not saying that this is not happening, it is, I see this too.  The outpouring of kind gestures, the sharing of food and the support of those in need, and honoring our essential workers, but as we move forward, because that is what we will do, we all have to think about the “common good of all people”. Regardless, if we are in a pandemic or not, this is the perfect time for us all to learn some amazing lessons of gratitude and respect.

This is what I hope for us today, is that we all grow and choose to help not hurt, choose to support not sabotage, choose to spread love and compassion, because when these things start to spread, our pandemic will begin to shift from a horrible virus that has to this day taken over 67,000 lives, to a pandemic that has taught us all how to live with purpose.

That is it, that’s all I have for today, tomorrow is another day, one that I will cherish as much as this one.  A day filled with lots of rest due to the chemo, lots of laughter thanks to my family and lots of love…..because that is how I roll!!

4/26/20

23 years ago, I was marrying my best friend, when people say that time flies, they really mean it.  When I woke up this morning I was amazed that I was actually writing “23” on my little love notes that I posted all over the house.  I put them on Keith’s bedside table, the mirror in the bathroom, his coffee maker and his coffee cup (you see when you can’t get out to get a card you have to get creative).  I found myself thinking about the past 23 years and where we were for all of our anniversaries, bad idea, remember I have chemo brain, I can’t remember all of them specifically, however I do remember the nonstop love and support that I have always felt when my husband looks at me.  I do remember the love that he has unconditionally shown me over all of our days…..even the tough ones, and trust me we have had some TOUGH ones.

Let me tell you, quarantine is no picnic with 2 teenagers (I am sure some of you are experiencing it as well), that being said I can’t imagine having younger children during this time either.  Needless to say, Keith and I have varied on our parenting techniques and expectations over the past 5 weeks, and I am guessing that we may continue to do so.  It has been difficult and frustrating, but in the end we get through it, and emerge stronger on the other side.

That got me thinking about my cancer journey I have been on, and one that I will continue throughout my life time.  What I have learned over the years is that support and love is unconditional.  But it is also hard and wonderful and messy and sometimes down right impossible, all of that being said, once you get through all of the messiness, you come out stronger. Those traits are the same when you are battling a disease that has a hold on your body.  I started more chemo last week, and I was feeling angry and a bit sorry for myself.  Keith listened to me and let me cry and then he once again lifted me up, told me how strong I am, reminded me of what I have been through so far and why I continue to fight, he held me and listed all of the things we have been through and how we always come out stronger.  So, I will go back to chemo this week, and I will do the recommended rounds, I will lie in scan machines, give more blood, be poked and prodded and wait for the words we want to hear.  I will continue to fight and love and move forward.  This is what we all need to do every day, regardless if we are battling cancer or the corona virus, if we are spreading love amongst our families and neighbors or if we are on the front lines spreading love to those who are sick.

You see my vision of a good life is living it to the fullest, in this moment, fighting for what you believe in and helping when you can.  I have been blessed to find someone to stand by my side while doing this, we have been blessed with 2 amazing children that push us to grow in ways we could not imagine.  So, as I continue on this journey, I will continue to fight, not just against cancer, but against hate and injustice, something that I am seeing more than I would like to in a time like this.  This is a time to come together not divide, to support, not tear down and to love unconditionally.  Let’s all give it a try …. I can tell you this….it certainly cannot hurt!!

Happy 23^rd anniversary to my best friend, love of my life and the best husband I have ever had!!! I love you Keith!

4/17/20

One year ago today, at this exact moment, I was in a surgery that would change the course of my life.  I beat a 5 ½ lb tumor that was wrapped around my organs. Yes, I lost my pancreas, 1/3 of my stomach, part of my intestines, my spleen, and had my portal vein reconstructed, but I came out cancer-free.  The 13-hour life-changing surgery that had a 50/50 chance of being successful was one of the hardest things I had to do, but guess what I did it.  When you cannot imagine doing something, you tend for the first thought to be that you might not be able to do it.  I remember thinking that it would be hard, I remember being a bit anxious, but one thing I don’t remember is that I was scared.  Fear is something that I have talked about over my journey, something that has not been part of it, for one reason or another, I have not been afraid.  That is still the case today. Today I woke up thinking about the notes that my children wrote me before my surgery last year, I woke up thinking about the look in my husband’s eyes when we walked into the surgery center at MD Anderson, I woke up and touched my 14” scar that starts on my sternum and goes below my belly button.  I thought to myself …… WOW ….. what a year!

And here we are in a time that no one could ever imagine, a time where a virus has stripped us all of our daily routine, social events, sporting events and so much more.  It has stolen well deserved moments from children and students as they move toward the end of their year, it has forced people to say their goodbyes over the phone, it has pushed our economy into disarray, it has taken too many lives and threatens people like me, however, it has made us all stop and look at what is really important.

All of that is unthinkable, and still fear is something I am not feeling, or talking about.  When I “see” people via zoom or telephone our conversations are about courage and perseverance.  When I think about all of the medical workers I see bravery.  When I think about the “essential workers” that continue to put themselves at risk to do their jobs I see loyalty.  When I hear stories of the “helpers” stocking food pantry’s, delivering medical supplies, checking on the elderly, picking up our garbage, delivering our mail, harvesting our fields, milking our cows and so much more…..I see the goodness of human nature.  So you see with all of the goodness going around, how can fear be part of what we put energy into.  I teach my children that we can not control the things that are out of our control, but we always can control how we react to these things.  As I get ready to embrace another day that I have been gifted with, I will make sure that my reactions to whatever happens today are filled with hope and determination, kindness and love not to mention a bit of laughter and a BIG smile.  For you see, we have all been given the gift of today, and the reality of today is that many have not received this gift.   So enjoy it, embrace it and recognize it…..and then go and remember that every day is a GREAT day!!

xoxo

4/13/20 – Easter day

Every morning when I wake up lately I force myself to stay in bed for just a few more minutes…..I mean where do I have to go anyways!  But this morning it was different, I got up quickly with intent and excitement, for today is Easter day!

I remember when the kids were little and we had to put their Easter baskets together late at night, but now that they go to bed later than I do and wake up later than I do, the tradition has shifted.  I wake up early, fill the Easter baskets with goodies and candy and then wait patiently till they emerge from their rooms.  This morning I am reminded of last Easter, when I was not able to be home with my children.  I, of course, had all the goodies all ready to go before we left for Houston.  Keith was home with them and over and over I gave him directions on who got what and where everything went, all while I was on lots of morphine after a major surgery.  He assured me that everything was taken care of and that I was not to worry.  So, I didn’t, I spoke to the kids on the phone and wished them a happy Easter.  Keith did an amazing job and was able to keep the Easter traditions going minus the egg hunt, which they said they didn’t want to do without mom.

This year I am home, I have had a break from chemo for 2 weeks so far and I think I get next week off too, and I am feeling a little bit more like myself day after day.  Our days leading up to today have been filled with baking Italian Easter bread, coffee cake and carrot cake, oh yeah and chocolate chip cookies!!  We’ve died eggs and pulled out old pictures from years past, and we have sat around laughing and enjoying. Being together…… I began to think that this is what it is all about.  Togetherness……is that even a word?  Well it is what is important…..and in this day, this challenging crazy day that sits in our unprecedented time, I hope this is what people remember.

Regardless of your religion or beliefs, being together is what it is all about.  And here we sit in a time where we cannot be together, for the sake of keeping our loved ones safe.  We are forced to celebrate this great day of rising up alone, we are asked to not share a meal with our neighbors, or extended family, there is no singing in the churches to celebrate the day, and the Easter egg hunts are all cancelled.  All of that being said, we are given the gift of pain.  I know maybe you are asking what in the world?? Who would want that as a gift?  Well, I can tell you first hand, as I have lived with and practiced pain for quite some time, that it is how we get to the other side.  You see without pain we cannot grow, we cannot push ourselves outside of our comfort zone.  Just as in Jesus’s story pain came before the rising, before he was able to emerge into something stronger.  So, let us all sit with the pain, feel it and embrace what it means is coming next.  If we are some of the lucky ones we will emerge stronger and more confident.  We will understand that in order to heal we have to come together, and in order to grow we have to experience pain.

I hope that today you are embracing what we are gifted with, that you are grateful for the simple things, like being able to take a walk or being able to continue your traditions with your immediate family.  I hope that you feel all of the feelings of today and the days to come, and I hope that with those feelings you recognize your growth as you move forward.

4/7/20

One year ago, Keith and I were on our way to Houston, I was living with a 5.5 lb. tumor in my abdomen and getting ready to have a potential lifesaving surgery that had a 50% chance of working. I am amazed at what can happen in a year — today I am still battling cancer, although I kicked the 5.5 lb. tumor’s ass and lived and thrived after the surgery.

Last Friday I had an MRI and on Monday I had my CT scan.  Both are usually done in Houston at MDA, however due to the state of our world right now, travel was not an option.  Needless to say, we have been waiting for results.

I was surprised to get a phone call from my local oncologist’s office this morning confirming my appointment in the infusion room tomorrow at 10:15 am. When I heard the message my heart dropped. The phone call meant that the scans showed no improvement and that I needed to do more chemo. It was not what I wanted, so after listening to the message I called back and asked if the message was correct. The scheduler indicated that it was on the calendar and that it said that I had treatment. My heart dropped lower. I told her that I didn’t know if I could do it and that I would reach out to Brian directly. The benefit of having your Oncologist in your contacts is that you can text him when you are about to have a heart attack!!

Deep breath Mara…I shot a text out to Brian and he indicated that he read the CT and that it showed improvement. Whew. He was waiting for the MRI to come back. I asked if there was any way that I could have a break for maybe just another week from chemo. He said let’s wait for the MRI.  It didn’t take long as he texted me within the next hour.  The MRI showed that the smaller lesions that were on my liver were gone and that all that was left was a small 7 mm lesion in the right lobe of the liver. My heart soared and relief flooded my whole body. Then he texted the words I was longing to hear—break, break, break, break.

The scans will be sent to MDA this week and reviewed by my Surgical Team as well as my Oncologist there.  They will come up with the next step in my treatment journey, but for the time being I am going to rejoice in the break that my body gets. My taste is slowly returning and I can use my hands without crying out in pain. My eyes are slowly getting back to normal and little by little I will gain some strength back.

With all the gratefulness in my heart, I also remember that I am not alone, that many others, especially now are struggling with medical issues that some could not imagine. I will spend my day reflecting and rejoicing, being grateful for all that I have and sending strength to those who do not have the joy of a break from chemo.

In such an unthinkable time, I will remember that everything I do has an effect on everyone around me sending a ripple effect into the universe. I hope that my gratefulness and strength reaches you today in a ripple, lifts you up if you need it, and gives you a bit of hope, because, with hope all is possible.

3/29/20

This morning Keith and I were to get on a plane to go to Houston, once there I would have all of my regular scans and we would map out what the next step for my treatment is. Of course, that is not happening, and although I cannot imagine leaving my children or home during this uncertain time, I also am anxious about what this means for me moving forward.  My wonderful team here will have the scans done locally, and then they will be sent to MDA.  I will wait patiently for the results and then via email or phone our local doctors and doctors at MDA will consult on what comes next.  In all honesty…..I just want a break.  The chemo that I am currently getting drops my numbers so low that I am high risk, so that would be nice to take out of the equation.  That is just one of the side effects….others are the inability to use my fingers, painful hands, and now feet, to no taste, appetite or even desire to put anything in my mouth, the list goes on and on.  At least my sleep has started to get back to some sort of normal.  All of those things would be wonderful to get a break from…..but then I get nervous, what if I take a break and the lesions grow? Or spread? So, I am working on letting that go and trusting my doctors to make the best choice to keep me safe and healthy.

You see we are in unprecedented times, times that no one ever imagined.  I am constantly amazed by the increase of cases locally daily, and the unwillingness for our government to shut us down and force a shelter in place.  I fear that we are in for a long haul, with lots of people losing their lives and suffering.  So, then I think, what if??? What if I have fought all of this time just to contract the virus that would surely hit me harder than anyone else.  I am doing everything that I can to take care of myself, my family has been home and quarantined for rolling into 3 weeks now, my children are taking every precaution that we ask them to, my parents are wiping down and disinfecting everything that comes into the house, Keith is constantly wiping counters and cleaning….but this virus is sneaky, and no one has figured it out yet.  You see the number of people that I know that have had the virus is rising, even one childhood friend's mother who died due to COVID-19.  One case was because a doorman at a bar that a fellow coach visited had the virus….so think of that, the doorman either touched the door or the guy's ID and then the guy touched it after him picking up the virus.  Like I said …..it is sneaky…

My sister is on the front line in Seattle and I pray every day that she does not get it, or even bring it back to her children.  People all over the country are walking around with no symptoms and infecting others daily, this we know when we look at the numbers, and the numbers we have are just the beginning.  These are the facts, not just me being nervous because of my situation, but the actual reality of what is happening in our country.  I have said it before and I will say it again, I am confident that we will come out of this stronger, with a better sense of what life is really about, with stronger relationships with our family, our higher power, and our neighbors.  However, until then it is imperative that we all stay home and stay safe.

So, a break from chemo would be great, it would give me a little piece of mind that maybe my risk is not so high.  However, whatever the doctors choose is what I will do.  May it be more chemo, a surgical procedure or just putting everything on hold for a little bit is what it will be.  I am grateful that many people are not dealing with all of the concerns that I am, but I also recognize that I am not alone in my cancer journey.  So, I focus on the positive, I reach out and help those in need and I sit quietly letting gratefulness roll over me daily, because even in these trying times what we have is so beyond imaginable.

Stay safe and stay healthy ….. and remember that every day is a GREAT day!!

3/21/20

The day that I was told that I had cancer my life changed in many ways.  You see when you get a diagnosis slowly your “life as you know it” is stripped away.  First, I had to stop working to make time for the daily appointments, procedures, and tests.  Next as the treatments began I retreated to my home, friends could only stop by and talk to me from afar, there was no touching or hugging, and of course, due to the treatments, I was home-bound.  You see slowly everything fell to the wayside, no going out to eat, or shopping with my daughter, no going to soccer fields or bike rides.  During this time little by little, my perspective on life began to shift, some things that I thought were important to me were not and others became very important.

I focused my attention on my mind, working on strengthening it and training it so I was always stronger than the disease.  I took time for myself first thing every morning, with writing, praying and meditating, and I began to gain control of what is an uncontrollable situation.

You see when we are faced with trauma, any kind, we all react, most likely we react with fear, anger, frustration and sometimes even hate.  I learned that my reaction to my situation would not only affect me but would have a ripple affect across my family and community.  So, as I quickly shifted my views and leaned into what was becoming my new world, I reveled in my new-found peace.  You see when your life depends on it, it is easy to see the good in every day, it is easy to embrace kindness and it is healing to take one day at a time.

During my journey I have shared these perspectives, I have talked to groups of people, shared with my family and friends, and have taken to writing a lot.  The feedback that I get is that my message is helpful, that it has people thinking and hopefully seeing that we only have this minute, so when we cherish it our life becomes fuller.  Trust me…I know I am not the first to share this message, and I pray daily that I will not be the last, what I do know right now is that our world has been given a diagnosis, trauma is happening all over, and the life that was stripped from me due to Cancer is now the experience that our human race is having.   We are being tested down to our core, challenged to do the right thing by staying home and limiting contact.  We have watched our leadership make choices that some agree with and some don’t, and we will watch in awe as this all unfolds.  I cannot tell you how to react, but I can tell you that your reactions impact us all.  I can say from experience that living in fear and being angry takes more energy than embracing the situation and making the best of it in the moment.  Day by day we will all learn more and more about the situation our country is in, we have watched other countries go through trauma as well and we have seen the beauty coming out amid the sadness and death.  I have to say that I do think that our country has yet to know or see the devastation that this pandemic will do, and that is scary, especially to someone who is in the category of “compromised health” but I choose to deny fear, I choose to live with gratefulness in my heart and to make sure my reactions are positive and helpful.

As I continue to battle my cancer, and our country continues to battle COVID-19, I  have faith that we will win, that our country will come together to understand the impact that we each have individually to help our human race.  I will be amazed at the coming together of communities and the out pouring of kindness from random strangers.  I will pay it forward as much as I can knowing that everyone

3/16/20

Pandemic….that’s the word that is being used now to explain what is going on in our world with the COVD-19.  I am not that medically minded, but I have learned a lot over the past 2 years, and what I know is that for people like me, this is no joke.  For the average Joe, who is healthy and able to fight off an infection, this is still no joke.

So here we are all, faced with something that is new and concerning, so what do we do?? Personally, this is what I am doing.  I haven’t touched, hugged, hand shook or touched anyone in a about a week.  My kids kiss the top of my head and I get hugs from my hubby and son when they are just out of the shower.  I disinfect everything…..A LOT.  I am not entering any public places at all, and if someone one comes over we visit outside.  My hands are raw from washing them and I go through a ton of sanitizer and wipes.  My parents thankfully arrived from Italy before it got to the level it is now there, however they placed themselves on a 14 day self-quarantine, which will be over in 3 days (yahoo).

You see I am here is my reality.  I am one of the “high risk” individuals that this virus can be deadly to, and my thought is that I am not fighting for my life beating cancer only to get sick with a deadly virus. I have no spleen, no immune system, low white blood cell count, I am less than a year out of a major surgery, and I have potential metastasis on my lungs…..none of those things make for a good diagnosis.  So we will bunker down, make the most of every day and give thanks for what we have.

So while we wait for whatever comes next, let’s remember this…..none of us ever  really knows what is around the corner.  So, breathe deep, practice patience, take time to enjoy what is around us even if it is something that we have never ever imagined.  This will push us into a place where we will need to reinvent ourselves, reinvent the way that we think, behave, respond and treat each other.  With all of that opportunity to grow I figure something good is going to come out of this unknown.  Stay healthy, stay safe and stay HOME so we can all slowly move towards our new normal sooner than later.

3/9/20

So last Tuesday I got chemotherapy, then I was at the spa on Thursday and Friday for fluids, during my infusions there were 3 people that got to ring the bell. If you don’t know what “the bell” is let me tell you ….. it is a golden bell mounted on a wooden pillar that stands in what I call the Chemo Spa. When you have your last infusion or treatment, you get to ring the bell. If you are in the spa getting treatment, we all clap and whoop and holler. After the 4th person rang the bell last week on Friday, we all cheered and clapped again, then I found myself getting teary, but the last thing I was going to do was cry in the chemo spa, so I took a deep breath and moved passed the emotion. Like I said, when you are dealt a hand of shitty cards, sometimes you just push your feelings down. As I sit at the spa…..again….I find myself trying not to cry. I am tired, my hands and arms are riddled with open sores and bruises, I am in need of more fluids than I thought because I can’t drink nearly enough to sustain myself, food doesn’t taste like anything and putting it in my mouth is a chore. My skin is peeling from being so dry and I am losing the battle of keeping my weight up. On top of that, I am fighting off a cold, with a low-grade fever, stuffy nose and constant headache. And you know what I have no idea if I will ever get to ring the bell.

I ache for my life back, but then give thanks for actually being here, I yearn to be able to get up and play soccer on the beach with my boy or go shopping with my baby girl, but I have to give thanks for being able to just lie on the couch and watch them walk through their lives day by day. I know that this will pass, I know that I will feel better sooner than later, I know that I will win, but none of that does much to take away the feeling of the right now, this moment. I remember last time feeling so sick of feeling sick, and I am there again. I am trying to think if I got there faster this time? Or if my stamina is growing and I just don’t realize it. Either way, it is what it is, and this is what I have. But here is something that I can look forward to, on Thursday, my beautiful daughter, Kiara, my dear friend Patti and I will head north. We will drive to Tallahassee to visit Florida State University for Kiara’s accepted student tour. I am hopeful that I will have the stamina to enjoy the time we have there. Thanks to another dear friend, we will have a private tour with a golf cart, so that is a lifesaver as I could not do the 3-hour walking tour (I can walk for about 5 min). I am looking forward to whatever I am able to do. I will make memories and cherish my time with my girl and friend, and remember that these are just a few of my blessings. I will give thanks for the support I have been given and the ability to do whatever I am able to do. I will continue to wake up and remember that I am one of the lucky ones, I am not in much pain, I am here, and I am going to be okay.

So as I sit at the spa, fluids running, I set my intention to have a great day, I wish all of you a great day, and I remember that one way to do this is to reach out and support someone today, trust me you may just change their whole day with a smile!

xxoo

3/2/20

Today I am ANGRY….I am so sad that I feel as though I can feel my heart shattering and I am overwhelmed with gratitude.  How is it that we can feel all of these things all at the same time?  This is my question.  I am really focusing on feeling my emotions.  You see when you are battling for so long, or for short I imagine, you tend to – or should I say – I tend to recognize my emotions and then move past them.  It is something completely different to feel the emotions and let them take their course.   It takes more bravery I guess, or more work, either way, it is completely different and its not easy.

My dear friend, second mother, mentor and teacher is dying.  I knew it was coming to an end, and we don’t know how long she has left, but the reality is that she is dying and there is nothing that anyone can do.  Her hubby and love of her life has to give her morphine to keep her comfortable, she is sleeping 18 hours or more a day and has pretty much stopped eating much.  I have written about her before and I am sure I will write about her again, but I don’t feel as though any of it will take away the pain and sadness that the knowledge brings.  Cancer has stolen her life and it makes me so FUC(%^N#$G angry.  Why her?  Why me?  This is a thought I have at times as well…..I read the papers, we all know that there are horrible people out there doing horrible things, so why not them? Whenever I think it; I know it is not the right way to feel, but if I am being honest it is the way I feel once in a while.

Joen has been part of my life since I was 6 years old, my memories of her go back as long as I can remember.  She taught me life lessons, was my professor when I received my Montessori degree, mentored me while I started teaching and was a confidant when I needed her.  She made me laugh, and she pissed me off, she has a heart of gold and the drive and determination of a lion.  She had a way of cracking a joke, and then teaching you a lesson.  She has touched so many globally with her dreams that brought her to faraway places facilitating others to be Montessori teachers, which in turn touched children, who are all of our future.  When her cancer moved to her brain and she was told that it was terminal, she placed a ladder in her living room (I believe it was a gift from a friend) she sent me a picture of the ladder and told me the story of how each person’s life is a journey and that climbing the ladder was part of the journey.  She shared how she loved to drum and chant and that all she wanted to do was spend every minute she could with Art, the love of her life.  Well, I know that when it is Joen’s turn to climb the ladder that she will go in peace knowing that her life was one to be remembered, that she lived a good life, touched many people, loved deeply and was loved deeply.  I guess what more is there, can we all say that we have lived this life? This is my hope for all people is that we can feel our emotions and recognize them, positive or negative they are important.  I can’t imagine a world without my Joenie Balognie, but the time will come, and when it does I will chant and drum and cry and reach out to the universe for some comfort.  Today might not be Joen’s last one, but thousands will die today because of cancer.  People I don’t know will be climbing the ladder, away from their pain and suffering.  I pray for peace for all of their families and loved ones, knowing that when it is my time that others will be praying for mine.  Please, I beg of you, go and make today a great day……it is so important to me and most importantly it makes you feel soooo good!!

2/19/20

Woke up early yesterday to head back to Houston for a bunch of scans, CT and MRI.  As we drove to the airport I was taken by the beauty around us.  The airport and planes were packed so I was prepared (Mara the Jedi)

Once landing in Houston there was a different kind of beauty, one that still made me smile.  As I sat in the same chair as I did only 6 weeks ago, I was then struck by how different I look and feel.

Cancer can steal my hair
Drop pounds from my body
Kill my tastebuds
Take my appetite
Give me rashes on my face and body
Clog my tear ducts
Hollow my eyes
Rot my nails away
Give me a constant headache

But I will never let it steal my...

COURAGE
FAITH
STRENGTH
LOVE
DETERMINATION
COFIDENCE
POWER
FIGHT

I will never stop praying that everyone touched by this disease all over feel peace and healing.

Please touch someone today with kindness.  Open a door, give a compliment, give a random hug, support someone who is down, just be the amazing kind hearted person you are!

Today a saying is ringing in my head, one that a friend of ours tells me on cards, when he sends flowers, by texts to Keith....

I AM A WINNER
WIN AGAIN MARA
NEVER STOP WINNING

So....as we prepare for another day of seeing some of my favorite doctors .....and of course wait for the “news” ....I will tell them that I am a winner and I am ready for whatever comes next!

Everyday is a GREAT day....embrace it!

2/16/20

Well, round two of chemotherapy is finally over… And let me tell you it was way better than round one. Brian and I made some changes to be proactive this time. First was cutting out the Decadron, which is the steroid. It shot my blood sugar so high causing extreme dehydration, which led to a ton of other issues. Cutting out the Decadron was helpful in many ways and I’m grateful that we did it. The other thing we did was schedule added fluids, which I received on Thursday and Friday and I will have again tomorrow. This helps me stay hydrated which is way easier because due to the thrush and mouth sores I’m not drinking or eating as much as I need to be. All that being said and done I am doing much better than I could’ve been doing. I recognize that I am stronger this time around. I am better this time around. And I am grateful for that.

As we get ready to head back to Houston I have a mix of feelings. I’m curious to see if the Chemotherapy has worked, as this chemotherapy is one that my oncologist there indicated that I could stay on for the rest of my life. Trust me, not that I want to stay on chemotherapy for the rest of my life, but if that is what I have to do then so be it. I’m also curious if it worked so well that maybe they will decide to give me a break from it.

Taking Kiara for her college acceptance tour and orientation without being on chemo would be really great, however, what they say is what it will be. Might be chemo for longer. Or another surgery. Or a break.

I will embrace whatever the outcome is. I will look at it straight in the eye and I will continue to fight.

Trust me fighting is no fun, in fact, I feel like it’s harder to fight this time than it was the first time. I’m not sure quite why, maybe because I knew it was coming? Maybe because I knew this could be what it is for the rest of my life? Either way, the fight is in me and I will continue.

Keith has a friend who sends me cards and flowers often. “You’re a winner,” he says “win again” and “you’ve got this.” Those messages ring throughout my head whenever I’m feeling tired, sick, exhausted or just plain horrible.

I am so grateful for all of those lifting me up when I am down. I am so grateful to all of those praying for me around the world. I am so grateful for all the love that has been thrown my way over the past 17 months. I am so grateful so grateful so grateful.

Loving with a grateful heart is the most important thing I can do. Living my days one day at a time and embracing all of the moments… Good the bad and the ugly… For this is who I am.

I’m ready for Houston. Since I get a week off of chemo, Keith and I will do our best to make the most of the time we have together. We will walk together, hold each other tight and know that whatever it is, it is what it will be.

Show your grateful heart today and make it a GREAT day!

Xox

Image:

1992

Lots of hair

Lots of love

Inner Harbor Baltimore

28 years later= less hair ....way more LOVE and a lifetime of memories and adventures....so excited to continue our journey!

Hello, Everyone—

Mara has chemotherapy tomorrow. So today is a great (!) day to send her thoughts of healing. Thank you so much for your care and support.

2/10/20

As my week flows into another dose of Chemotherapy I was struck by something today. Keith left this morning after giving me a long hug and a sweet kiss, and no sooner did he leave did my phone ring, guess who? Yep – my hubby. He was calling to once again let me know how much he loved me, how strong I was and that we will beat this…..again. You see that is when it hit me, I am not afraid, and really, I am not even worried. I am sure that I will beat this again…..and again…..and again if that is what I need to do. I wasn’t afraid the first time, and I am not afraid now.

Some say it is because the lord has taken my fear away, and I believe that is true to a point, I willingly gave it up to a higher power. I believe that my higher power has also blessed me with a peace that comes from inside and around me. You see, I believe that love and compassion is how we should focus our hearts, and when we do this fear, anxiety and other struggles we have, don’t have a chance.

So, I set my intention today to embrace all that comes my way today with love. I started my day with a wonderful Sound Journey that filled me with gratitude and love (thank you Sync into Sound, Maggie and Pierce) while experiencing the absolute beauty of sounds I drifted off into a meditative state, and a sense of peace and calm washed over me. The vibration of the sounds, the beat of my heart and the ease of my breath all came together to send me to a place of pure relaxation and healing. You see when we take time to listen to ourselves, really listen, we find what we need. Through the struggles and sick days, relaxation is a word that is far from a reality. Between the drugs, steroids and rampant mind running, true relaxation is a rare commodity. So today, I focused on love, I focused on myself, I focused on just being, and boy was it nice! Here is the reality……for some reason I am still here, may it be to raise my children, continue to love my husband, or to touch a friend or a stranger. All of those things are powered by love. And so, I'm grateful that I can continue to do all of those things, even from the couch when I don’t feel good.

I wish you nothing but love and happiness today. May you embrace your power to love unconditionally and fully. May you thank your higher power for the gifts of goodness that they have spread through your heart and may you have nothing but health on your journey moving forward.

When your best friend/hubby knows you’ve felt like crap all day, he gets you showered, finds some dark sunglasses, gets you into the car and drives you to the beach. Although the tourists blocked the view (they are here) the fresh air, beautiful sunset and perfect company made my heart fill with gratitude and love. Oh how lucky and blessed we all are...all you have to do is look around! Hoping your day is full of LOVE!!

 

GFM is HERE

2/5/20

As I sit down at my computer this morning I scrolled through all of my writings. I wish I had the ability to focus so I could read them all again, but my mind is not capable of that right now.

I am sitting at my dining room table, a fresh bouquet of flowers to my right, my hubby is cleaning the kitchen and making his coffee, while every 5 minutes checking on me. “Honey? You alright?” My answer is, “Yes, I am good.”

Yesterday was chemo day and it started just like my last 18 chemo days (a guess, I forget how many). I think I shared that the last round really kicked my butt. In fact, I couldn’t even get up for days. So our appointment started with a meeting with my friend and oncologist, Brian Berry. I cannot say enough about this man, his knowledge, his attention to detail, his ability to listen, and how he cares. I feel special because Brian and I go back to when his children were little. We have known each other for a long time. I believe he treats every one of his patients with the utmost care and compassion. We talked about the last round, how it hit me and we made some adjustments. He encouraged me to take the pain pills and we booked pro-active fluids so I don’t get so dehydrated. The time he took with us was priceless.

When it was time to move to the spa area, Keith and I felt better about this next round. We were directed to our side of the room and we settled in. This infusion is only about an hour so I was ready to leave once I sat down. That being said we had met with Brian for a while so it was after 4:00 PM and the nurses were ready to get me hooked up and rolling.

Keith sat next to me and pulled out his coaching books, drawing diagrams, planning practices, making notes. I watched him and smiled. It is so wonderful to see the person you love doing something he loves.

The bags were hooked up and the “love juice” (as my momma calls it) began dripping. Because it was late there were only a few of us there. Right away Keith noticed an older man to our right who kept saying he was cold. The nurses went into high drive and began the process for when someone begins to have a reaction. He was shaking, a lot, and loads of heated blankets weren’t really helping. One nurse was holding his arm down so they could get his blood pressure, while another nurse pushed Benadryl into his line. A third nurse got him hooked up to oxygen. I sat and focused on my breathing. Keith held my hand and I said some silent prayers for this stranger. The doctors were called, his wife arrived, and the decision to ambulance him to Manatee Memorial was made. All he wanted to do was to go home.

My bags continued to drip, and slowly I began to get itchy. SHIT… I thought. There is no way that after over 18 doses of chemo that I am going to start to react now. Breathe Mara, breathe, and so I did. I went into meditation but the itching continued. I looked at Keith as he was asking me how I was doing. “I am itchy,”

Well that is all you have to say in a Chemo Spa. He jumped up, went to the nurses, and within minutes 3 nurses were at my chair asking questions.

“Where are you itchy?” My face.

“Are you having trouble swallowing?” No.

“Any hot flashes?” No.

I tried to talk the nurses into letting me just have a few minutes to see if I could get it under control, however as I was talking hives started to pop up on my face and chest. “Ummmmm, ok,” I said, “do what you have to do.”

A steroid was pushed into my line first. My sweet nurse Arlene said, “Mara, this is going to make you feel like you have ants in your pants, but it will pass quickly.”

“Huh? Ants in my pants?” I replied. Just as I was asking her that question, I felt it! And let me tell you, it does NOT feel like ants in your pants. In fact, that is a really nice way of saying, “Mara you’re going to feel like someone is taking a blowtorch to your pelvic area, then it is going to move to your face and down your chest.”
The burning and itching were so intense I nearly jumped out of my chair. One nurse gently held me in the chair, and I made it really clear to all of them that they lied to me!

We all laughed and I tried to find my breathing again to get through the “won’t last long.” Thankfully it didn’t, but it was probably the longest 2-3 minutes ever! In the meantime, another nurse pushed Benadryl into my infusion and the hives started to subside.

Brian came out to check on me and thankfully I was feeling nice and loopy now. I told Keith I was not going anywhere near a hospital and he assured me that no one said I needed to go. My bags were started up again and we continued through the session.

When we were leaving the nurses made sure Keith and I knew all of the things to look for over the next 24 hours: shortness of breath, hives, problems swallowing. If anything were to come up, we were instructed to go to the hospital right away. Thankfully, the night went well, besides Keith checking on me every 5 seconds. I have to say the steroids didn’t let me sleep very well, but I can nap as much as I want.

I woke thinking of the older man who couldn’t go home. I wondered if he was still in the hospital or if his wife got to take him home. I said a prayer for his healing and comfort. You see, here is a lesson that happens to me every day. Something somewhere reminds me that we only have this moment, this time that we call the present. I know, I know. I say it all of the time, but it is because it is so true and although I am living day to day, sometimes I forget.

So I wake and get ready for yet another great day. Mine will consist of resting, hopefully, a walk with a friend, more resting, and hopefully a lot of eating. Not that I am hungry. I am not. And, unfortunately, this chemo makes everything taste horrible. But I need to eat and so that is what I will do.

1/26/20

 

It is Sunday, 5 days past my second chemo infusion, and I have to say it kicked my butt!

 

When I learned about my next step in this journey, I was not happy about it. Chemotherapy is no walk in the park, but we do it. We endure the pokes and prods. We endure the sitting in a chair hooked up to something you know is poisoning your body in hopes of also healing it. You do it because it is another chance of buying more time.

 

And so, I did it, and I will continue to do it, and really the chemo infusions are not bad. I didn’t have a reaction to the poison as some do, the nurses were wonderful, friends come and sit with me and we crack up. I am read the long list of potential side effects on the body. The injector of Neulasta is placed on the stomach area. You see part of the infusion is a bag of Decadron or strong as crap steroids that keeps the pain or whatever is coming at bay for at least 24 hours. At least that has been the case for me.

 

But once the Neulasta wears off (27 hours after chemo) the onset of bone pain is almost immediate. You see, the chemo that I am on drops my numbers, like really drops them, like I can’t walk drops them. The Neulasta stimulates the bone marrow in your bones to go into over drive and produce white blood cells. So, what that feels like is if I stand, sit, roll over, walk, try to move my bones will shatter, split right down the middle. I think at one point I actually said that to Keith in a fog of pain. He very calmly said to me “Honey, that is not going to happen” and I laughed, but then it felt like my ribs were cracking. So what do you do when you cannot do anything but lie in pain and cry? Take drugs! Thankfully I have plenty of them so that is what I did and that is where I stayed for the next 48 hours.

 

Taking so many medicines has other side effects, those I will not share.  But guess what? It is all passing—the pain has subsided to not needing drugs. I still cannot get up on my own, but I walked around the dining room table today with Keith holding me up!

 

I will take small victories, I will relish in them, and appreciate them.

 

I am still here. I can still fight and so many are not given that option. I am married to a sports fanatic and so we are all shaken by the unexpected and horrible death of Kobe Bryant and his daughter. Here is what I know, there are tons of individuals that took a breath five minutes ago and now are not with us. There are crazy accidents, horrible mistakes and unexplainable deaths all over, so I welcome my pain. I welcome the fight. I welcome the challenge to once again beat Cancer and live my life to the fullest.

 

We all know that we only have today. I have said it many times. So, I hope that you all enjoy your days, revel in your failures, take strength from your traumas and know that someone somewhere is not that privileged.

 

Every day we are given is a GREAT day!!

 

1/17/20

 

So the morning started early with my regular regimen—waking up with the sun, lying in bed thanking god and the universe for the breaths I am able to take, and being grateful for my presence here in this life. Next, I usually fill up a LARGE stainless steel cup with clean water, squeeze half of an organic lemon in it and drink up!  That was not the case today and boy oh boy am I thirsty!

 

“Nothing to eat or drink after midnight.” That’s a sentence I hear a lot when travelling through the world fighting cancer, or getting scans, or MRI’s or many other things. That is my reality this morning.

 

So as I sit for a few minutes before I head downtown to get yet another port implanted in my body, I thought I would write. It always makes me feel better, not that I am feeling bad. I’m just recognizing my feelings of anger and discouragement and that this is what my day has in for me and it’s OK. Most of the time I am naturally happy. I don’t struggle with seeing the glass half full, or the good in the really crappy situations. It is how I have been my whole life and I am grateful for it. I wish it was as easy for some I know to feel the same way, but that is not how everyone is put together. Sometimes I wonder if Cancer knows that about the humans that it attacks because usually, the ones I have met are in the same frame of mind as I am. Not all of them of course, but quite a few.

 

Or is it just that when you are faced with dying that all looks much brighter and you are able to see more clearly what is so beautiful right in front of you? Who knows, surely not me, but today I am wrapping my head around yet another procedure, yet another slice in my body, yet another invasion, and that is OK.

 

Yesterday Kiara and I were driving somewhere and we talked about how amazing the human body is. I just think of all of the assault that my body has taken and it still blesses me with GREAT days, filled with the ability to walk and eat and enjoy my days. So today I apologize to my body again for the invasion of outside materials. I love myself and recognize that this treatment will help my body continue on, although I also recognize that the poison that is administered will also deplete my body. I will work out and take care of my body tomorrow and the next day and the next, hoping to strengthen my body and soul as much as I can. I will only put in clean water and clean food and give thanks that I am able to do so, and I will fight, actually fight like hell, because I love my body. I love myself and I love the life that I have right here, sick or healthy. I know some don’t want to fight, or can’t but that is not part of my story, or who I am. So here I go off to start another day of fighting and loving life as much as I can.

 

Make it a GREAT day!!

 

1/15/20

Well one chemo down and who knows how many to go, that being said I am doing OK.  Before you start chemo you meet with many doctors and sign all kinds of waivers (again).  Waivers to allow them to administer poison into your body, waivers that explain all of the side effects, waivers for other stuff I don’t remember at the moment, one of the side effects of chemo I am becoming to enjoy….chemo brain!  So that is what I did yesterday.

 

It was explained to me that once again I will lose my hair, that I would get sores in my mouth, that I may break out in a rash, that my nails would rot off—the beauty regimen of Chemo is tough!

What I choose to hear is it will give me a chance to continue to live life with my family.  I may get to travel again. I get to visit colleges with my daughter and watch my son on the soccer field, and more. So the treatments start. When I look back at the 8 hours a day, 4 days a week I endured in the beginning, this was a cakewalk!

 

I was only there about 2 ½ hours and next week it will only be about 4 hours. The downfall yesterday is that I had made a decision to not get a port put in right away. I wanted to wait at least for the first 3 rounds.  I thought, or felt, or both, that if I didn’t put it back in right away that in some way that I would feel that this wasn’t as permanent as it really is. However when my beloved friend and doctor so clearly said to me, “Mara, the next dose will burn the hell out of your veins and you are going to wish you had a port in, so I want you to put it in ASAP,” I buckled.

I do not like pain, I have a terribly low pain tolerance and I am a baby when I am in pain. Funny, right, when you look back at all that I have been through. I am sure that my family may say I am tough, and Keith will rave about how much I endure, and it is true, but yesterday when they had to use my hand as the infusion spot it HURT!  Tape is the worse and they tape everything down, and taking that off HURT’S!  So this is where knowing people comes in handy. I will see my surgeon today and if all goes well I will get my port put back in tomorrow, and I welcome it!

After leaving chemo yesterday I filled up my large stainless steel cup with clean water, grabbed a bag of nuts, and Keith, Alessandro and I headed to Ybor city.  I know it sounds crazy, right? You see, Alessandro is a saxophone player, and he loves it, and it just happened that one of his favorite bands/player was having a show in Ybor and it was all ages. It was on the calendar for Thursday and we figured that would give me a few days to recover before we went, but when we went online to buy tickets yesterday (I know it was late but we have been a little busy) they had changed the date to the 14^th. Keith was at first adamant that I not go, I needed to rest blah blah blah.  I explained that this is why I am fighting so I can make memories with my children. So, we ventured to Crowbar in Ybor, got there early and got a great small table with 3 bar stools. We spotted Leo P (the sax player) outside the bar and Ale was able to meet him and get a picture.  As the bar filled up with an eclectic group the music started.  Once again, I was swept away at how music can heal the soul, I filled with joy for so many reasons.  To be able to be there with my boy, to be able to watch him in utter joy and awe as the band rolled into what he explained to me is called “Brass house music”.  The trio of a saxophone, trumpet and drum rocked the house like no other.  The base was deep and shook the floor, the bodies bobbled and jumped to the beat and I smiled.  Yes, I was tired and a bit nauseated, no appetite and just wanted to crawl in my bed, but none of that could keep me from enjoying the night with my boy.  The crowd was electric and the lights were dim. I leaned on my stool when I needed a break from dancing, but the pure joy of my ability to be there kept me going.  So this is why I am doing what I am doing—so I can continue to wake up grateful that I get to experience things with my family and be there to watch them when they are happy, support them when they are scared, and just revel in the life that we have together.

Today I will rest in between doctor appointments and I will welcome whatever comes my way with a smile knowing that today is a GREAT day

1/9/20

Well ….as someone NOWHERE said ….. let’s do that shit show again!  When I was diagnosed it was made clear to me that Leiomyosarcoma was recurring cancer.  It was also made clear that most people live their lives with it.  However, with all of that knowledge, when you feel good and look good I guess you just think everything is good.  Keith and I were delivered another gut blow today as my head surgeon told us that the liver MRI showed multiple lesions and that they are metastasis of my disease.  What does that mean??? Well ….. it means we go back to the drawing board, we start over, we fight like hell, and so that is what I will do.

Chemotherapy will start on Tuesday and we will do 3 rounds of 21 days each.  I am scared, I am so fucking pissed, I am sad, I am nervous, but overall I am grateful.  I might not feel very grateful in this exact moment, but I know that with the next few days I will wrap my head around what I am calling my “Round 2” and I will begin to recognize that I am still here, I can still hug my kids, my husband can hold me, my friends can support me and I can still enjoy every moment to the fullest.  May they be shitty chemo moments or moments filled with joy.  Realizing that my reality of life is that this is what it may be for a while is not easy, in fact, I think that the news we got today was in some way harder than the first time the diagnosis was handed down.  Who knows why, I am guessing because in my heart of all hearts I really truly believed that I had beat it, and I did at that moment.  My momma told me that she just wished that I had a few years before I had to fight again, and trust me….so do I.  But I know better than most that we only have right now, and that we are not in charge and cannot expect anything but what comes our way.  So here we go again……I will fight, I will cry, I will continue to be so angry that it overcomes me and then I will remember that I have a choice.  I can sit with the anger and let it eat me away, or I can accept the anger, recognize it and move through it, maybe with grace, maybe not, but moving forward is what I need to do.

I am grateful for this day

I am grateful for my best friend and husband

I am grateful for my family

I am grateful for my friends

I am grateful for the sunshine

I am grateful for the ocean

The list goes on and on ………

 

1/8/20

January 8, 2020
Keep on going

Off we go...thank you for your nonstop love and support.

As I leave my house at the crack of dawn, yet again, to travel to Houston, I stretch myself to bring memories of our family's most recent wonderful, bucket list trip to London and Dublin. The time together was priceless. The cities bubbled with holiday cheer, friends and family celebrating the joyous season, my children’s faces as we explored the (very busy) tourist spots and then retreated to old, less-traveled cobblestone roads. From museums to high tea, rocky beaches, and football (soccer) pitches. All of it was glorious and the amount of gratefulness I have is overflowing.

All of that said and done it doesn’t matter where we are, where we travel or what we are doing. Just being together celebrating the day is what makes joy a reality. It doesn’t have to be Christmas or Thanksgiving...they are only days, ones that we were blessed to share together in beautiful cities, and ones that many did not get the chance to celebrate.

So I welcome this day. One where I have to leave my children, give more blood than I want to, lie in machines for hours so medical professionals can evaluate my liver in “3D,” days where biopsies and tissue samples will determine the next step.

Let me tell you none of the above is on my growing “bucket list,” but I will lie still, breathe deeply, visualize a healthy liver and feel the light of thousands of people all over the world sending up light and love for the benefit of all people.

I hope that this day brings joy to you, that your bodies continue to bless you with health and that you realize how lucky we all are to wake up every morning.

Make it a GREAT day!

12/21/19

Have you ever been sucker-punched? Or taken down when you least expect it? As you know I have ….. and when Keith and I walked into Dr. Roland’s office on the 12^th I did not think that she would hit me again. But once again I was reminded that we only have this minute.

When Keith and I saw Dr. Roland it was like old times, hugs, lots of love and smiles and nonstop chatter about her most recent medical teaching trip to Uganda, my trip to Sedona etc. When she moved toward reviewing the scan she started with “we see something but I am not that worried about it.”  It is amazing how the oxygen can leave your body so quickly. I am guessing that is what getting sucker-punched feels like. (I have not ever actually been punched, which is fine by me!) It felt like I couldn’t get air back into my lungs…..so I held my breath and listened.  A short time later the stage was set for our next reality of my journey.

From the logical perspective I know that I am living with potential “spots” on my liver and lungs, I know that Leiomyosarcoma is cancer that has a high chance of reoccurrence, and I learned that regardless of all of that I still get to live my life.

So, when Dr. Roland sat with us and explained that one of the spots has grown and that they need more scans and a potential biopsy I should have not been surprised or felt sucker-punched, all of that being said it still SUCKED! From the emotional perspective, I didn’t know what hit me. You see, I am living my life to the fullest, paying it forward with kindness daily, reveling in my gifts and when you have battled cancer, have cancer or are in remission, hearing about spots or potential reoccurrence can take you down quickly……but then I remember only if you let it.

When we were done with our meeting with Dr. Roland we also saw my oncologist who explained that “if” the spot is anything, we have options. Boy oh boy, I love that word.  Chemotherapy, radiation, and a new procedure that goes in and boils or freezes the spot…..don’t they all sound like so much fun?

So the journey continues.

When we finished up at MDA we rushed to the airport and Keith and I parted ways, he was off to NC to coach and I returned home. I didn’t want him to go, but I knew that I needed some time to myself to process the news and the next phase.  When I sat down in a middle seat in between a young woman and a woman my age, all I really wanted to do was close my eyes and go to sleep, I was trying hard not to cry and deep breathing was all I could focus on. The woman to my left said hello and instantly her voice and face reminded me of my Aunt’s….all 4 of them wrapped together. Her kind smile, gentle voice, blond hair, soft eyes, perfectly dressed, strong sense of self and her pure calmness. We talked for a short minute, she was on her way to Philadelphia to watch her son play in The Army-Navy game. He is a freshman so she didn’t expect him to actually play, but the whole family was meeting for a tailgate and fun in Phili. Before the plane even took off she was asking me about what brought me to Houston and I told her my story (don’t worry I made it short!) She was amazed and told me how glad she was that I was feeling good. We talked more and when I shared about the spot growing, she reached over and touched my hand. I felt a comfort that I feel when I see and hug my aunts or even when I get an email or a card from them. It is hard to explain, but I knew I was supposed to sit there and that she was supposed to comfort me in some way, so I let her. She said that she had a feeling that everything was going to be just as it should for me, and how important it was to just accept the bump in the road and know that I cannot change it. These are all things that I know, but hearing someone else remind me was like air flooding my lungs again. I wondered if I had really breathed since we left the hospital. Halfway through the flight, she asked if it was ok if she could pray for me, and of course, I said yes.

Our conversation dwindled and I closed my eyes to rest.

She pulled out her prayer journal and began to write. When we were getting ready to land I was waking up and she was closing up her journal. The front of the journal had a phrase in sweeping cursive….. Live life to the fullest ….. she read the phrase and looked toward me and said that she was so glad that I was living life to the fullest and remembering that I was going to be ok.

Today is the 21^st and I am just now writing. I asked myself if that was because I wasn’t ready to really accept the next step, or the news, or more scans. Who knows.

I know that it took me some time to process it all ….. the trip, the news, the flight home. What I do know is that I feel good. I got to go out with my husband last night and dance the night away. I get to spend my day packing and cleaning with my kids to get ready to go to London tomorrow.

Do I like hearing the news, and am I scared and nervous and angry that once again my body will be subjected to more scans and needles? Of course…..but once again I promise that I will take the news and the next bump in the road as just another way to practice being present, appreciative and even more grateful. I know that all around the globe people are facing way worse than I have ever even seen, and I know that whatever this is, it is what it is. I will sit with it, accept it, and move on, for I have way better things to do than sitting around worrying about a spot in my body.

I am excited to make memories with my family, explore a new city, continue to love unconditionally and of course wake up grateful every day.

So I hope this holiday season you can shift something in the way you live your life, the way you go through your days or how you view things, I can speak from experience, it is the little things that you do that mean so much.  So…as you wake up, try hard to make the first thought in your mind about how you will be grateful today, or how you will pay it forward, or what you will do to take care of yourself, it takes practice but once you get good at it the results will change your life.

Happy holidays to you and yours…..from me and mine…..

Abundant love coming your way!!

 

A family shot in Tampa

My boy doing a sax solo at the program

Kiara after one of her plays

Sunset with my love

Our beautiful sky

These are a few of my favorite things!!

12/12/19

Well as I wake up this morning I am looking forward to seeing one of the people that performed my life-saving surgery, Dr. Roland, or as I call her Christina. Keith and I will finish up a regular check-up at MDA and then we'll part ways. I go home and Keith goes to NC to coach his team. I will miss him but I am so grateful that he has been next to me on this whole journey and that I will have the chance to grow old with him.

One thing people might not know is that long ago, in the early days of Keith and Mara, I canceled our wedding.  Yep…..it was all planned—the venue, the photographer, the band, not to mention everyone’s plans to attend the wonderful event of 2 people in love who had dated long distance for over 4 years. Three days before the actual invitations went out, I canceled, gave the ring back, left Florida, and broke the love of my life’s heart. Mind you this was a long time ago and we are way past it now, but as I look at my life one thing rings in my mind. Things happen for a reason. Whatever may be, and whether or not we agree, we have little control over a lot of what happens. Yes, of course, our actions and things we do impact the things that happen, but I believe that our path and the journey that we are on has a direct meaning. I have believed this for as long as I can remember. I remember really leaning into it when Keith was diagnosed with cancer over 15 years ago. Watching him struggle with chemo and daily radiation, lose so much weight that even the feeding tube wasn’t helping—I remember thinking, it’s going to be okay. Who would have ever thought that!

I was a young mom (Kiara was only 2) we had just moved to a new town where I knew no one and for some reason, although it was hard and horrible, that thought came to my mind ….. Everything happens for a reason.

Well, over my journey I have had a lot of those moments and truthfully have been asked one question over and over. “Are you religious?” and the answer is that I am spiritual, I believe in our universe, our plan, I believe in a higher power, but I also believe that in order for us to be truly connected with ourselves and our plan that we have to connect to others. We have to look at what is around us and take in the beauty and revel in the amazement of all of the gifts we are given daily. Sometimes that takes a lot of work, and to be honest I don’t think it is as easy as it sounds. But I can assure you, that if you take the time to see the connections, as a wise woman once told me, “Life is about connecting the dots,” then you will begin to know that there is way more out there than we will ever recognize.

Here is an example, over my journey I have had tons of medical staff (literally tons).  My mom noticed it first, but before, during and after my surgery, my nurses kept popping up with names of people that I loved. Tierra, Angela, Tim, Amy. It was odd and wonderful all at the same time. Yes, names are common, and anyone could have the same name, but those nurses and doctors caring for me touched me in a way that surprised me. My response to them when they introduced themselves to me was, “Oh…my dear friend is named….” Or, “that is my mom’s name.”

So the other day when our plane was delayed and we rushed to the Radiology Outpatient Center for one of my 3 scans, I plopped down next to an open chair.  Keith had dropped me off so he could go and park the car. I was checked in and the nurse brought my yummy (not really) large drink mixed with barium that I would need to finish within 45 minutes. This used to be a task for me, but I welcomed the cocktail and started to chug. A kind-looking older man exited the back area, pic line in-tact for his scan, and sat down next to me. I said hello and offered to share my footrest with him. The man’s face was kind and gentle, and there was a familiar look on it.  He softly said hello and explained that he had been coming to MDA for over 5 years.  We went on to share our stories only to learn that we both had lost our pancreas due to cancer. His pancreatic tail was removed and now his pancreas was not working anymore (welcome to the club).  Immediately I started talking to him about my new toy…..my OMNIPOD (my new insulin pump). He was interested and we talked for a few more minutes, then he stopped and asked what my name was. I reached out my hand and introduced myself. He did the same and said, “Nice to meet you, my name is Tim.” If you know my parents, my dad is named Tim. He is one of my best friends, my mentor, my hero, my strength and the best father ever. I have not seen my parents in over seven months, which is very typical (they live in Italy), but after spending every day with them for ten months, as you can imagine, I am missing them. Especially when I am dealing with medical stuff, which they were with me for it all.

This man sitting next to me smiled, and once again I was struck that things happen for a reason. Immediately I felt calmer, touched by my father’s strength through this man.  I could have sat there and not spoke to him, or not offered to share my footstool. But by simply taking the advantage of connecting with those around I was given peace and I was able to touch someone else.

Keith and I will celebrate 23 years of marriage in April. Although he was hurt and broken and confused he forgave me and we worked on the things that made me cancel and walk away. He stood by me, probably against some of his friends and family’s advice. He and I grew in our love and commitment, and I proposed to him (I figured it was my turn) and he said yes.  Our wedding was perfect and small and wonderful and full of nothing but sweet love (and stone crab!).

So as I look back on my life I am grateful for all of the things that have crossed my path in the 50 years I have been on this earth. I look forward to making more connections and for finding those “connect the dots” moments. I look forward to touching people along the way and making every connection a GREAT one.

We are off to hear the results of my scans, and I am sure that some people feel nervous and even a bit scared when these days pop up in our journey, and I have to say that maybe I have a tad of those feelings as well….but all in all, I just feel grateful.  Yesterday, today and every day that I have…..gratefulness will be my guide! Thank you, Thank you, Thank you!

 

11/26/19

When I think about letting go it means a lot of different things to me.  I remember as a child letting go was leaving my cousin….my first and best friend. We would long to spend as much time together as possible, come up with crazy plans so we would not have to leave each other and go back to our real worlds. As I grew older, letting go shifted into the loss of an animal or a friend who died too early, and now letting go is morphing again. Of course, it is never easy right? When you are young you feel as though the world is going to end when something goes wrong, but somehow you prevail and move through it. When the death of a family member or friend hits, the pain is sharp and longstanding, but somehow we strive to move through it. When tragedy strikes in any shape or form, human beings bear down on it, fighting to stay above water and to get through it. Somehow we manage to weather the storm and come out on the other side. Sometimes we are different than before letting go, I should say if you’re lucky you are different before letting go because that means you have grown in some way.  Pushed your boundaries, expanded your heart and morphed with the experience.  Easier said than done sometimes, but I can assure you, it’s beneficial at the least.

Well, here it is. Letting go for me has been a challenge lately as I long for my “old life.” People who see me say things like:

“You look amazing”,

“You look like you’re almost back to your old self.”

“Do you feel normal yet?”

“You seem like you’re better.”

All of these things are true, and I am grateful for the kindness and support that everyone gives me every day, but I have to say, I am far from NORMAL!  You know me by now, I am glad that I am not normal…..what is the saying? Normal is boring? But I do wish that I didn’t wake up every morning wondering where my numbers are, sometimes shaky because I am dropping too low, or with a headache, because I shot up overnight. I wish that I could go to work out, or for a walk, or dancing without thinking about what I should eat first, or how many snacks to stick in my sports bra. I wish I could get on a plane without a bag full of “extra gear” as I call it, to make sure I am ready for a trip.

So no. I am not normal, or back to “my old self.”

I am not better, however, I am different. I am stronger, and I am more grateful than I ever have been. So, this is a tradeoff, one that I welcome and revel in.

Do I like being Type 1 Diabetic? NO!  But do I like being cancer-free? YES!

You see letting go of my “old self” has been a challenge, but what I am finding on the other side is a strong, determined woman who will let nothing get in her way. Yes, that was who I was before too, but it is different now. To have to think about everything you do all of the time is first of all time consuming, and second of all, a pain in the ass.

However, I have 2 choices…just like we all have with everything we do.

I can choose to see the struggles in my “new life” or I can choose to see the strengths.

I can choose to wake up with gratefulness in my heart or resentment for how I am feeling right now.

So, as we creep up on Thanksgiving I am feeling thankful. I am remembering back to last year at this time. It was a chemo week and my family tried to keep things as normal as possible for me. We spent the day with dear friends who we celebrate with every year, although I didn’t eat much, slept most of the time and couldn’t sit for long, I was there. I was able to listen to the conversation, hear the laughter, receive gentle hugs and watch my family enjoy a wonderful day. I remember thinking that if this was my last Thanksgiving that I was going to enjoy it, and I did. So, this year, the quiche’s I am making are crustless and the sweet potato soufflé has 2 kinds, one with all of the yummy brown sugar and one without. I am looking forward to once again being able to make memories with my family, spending time with my dear friends, listening to the laughter, and eating some delicious food.

I am thankful that I was given the gift of my “new life,” thankful that my body continues to amaze me while living with fewer organs and different complications, but filled with more love and compassion that I could even begin to explain.  I am thankful for all of the people that have touched me along the way and have given me a bit of their strength so that I can be here today. I am thankful to god and the universe for stripping me of worry during my darkest days, and leaving me with a quiet sense of calm, knowing that all will be as it is to be, and that “letting go” is just one way to grow and morph into whatever comes next.

So, I wish you all peace, calm, gratefulness and joy during this holiday week, know that you come into my thoughts regularly and that I am thankful for you. I hope that you all are enjoying and never will settle for being normal

Make it a GREAT day!

 

11/14/19

When you are sick lots of people want to see you, they actually come out of the woodwork. So last year when I was told to get my “bucket list” ready I wondered about all of the people that had visited, sent cards, prayed and thought about me, but most of all I thought of my family. Did they all have “bucket lists?”

As you know, I did not believe the doctor that gave me that news, went on to battle and I won. It was a journey. So last year right before my second type of chemotherapy started (I think), I had dinner with some of my closest friends and we talked about the doctor that gave us the blow that took us to our knees. We talked about our “bucket lists” as I wondered if everyone had one? I realized that even though I was delivered some challenging information I had two choices, I could go about my days believing the story that they had prescribed for me or I could go about my days living the best life I could—even with cancer and chemotherapy.

Of course, I choose the second, and at that dinner, a healing journey to Sedona was planned. It was a way for me to have something to look forward to and I think it gave my friends and family some peace.  They hoped (I am guessing) that I was planning things for the future and this would help me have a vision, giving me more strength to not succumb to cancer.

Maybe it was true, giving myself things to look forward was empowering, thinking that I could travel again, explore a new place, hike and live my life did give me hope.

Well, guess what?

I just got back from Sedona and it was a wonderful journey. The travel, time change and elevation went as well as it could. The scenery was breathtaking and the company was the best.  My sisters, a dear friend, and I spent four nights exploring, relaxing, meditating and praying, but most importantly laughing…..oh yeah….and DANCING! The freedom that comes with singing out loud and dancing is in itself healing. Our days had a few bumps, like realizing that my insulin wasn’t working (WHAT?) and then forgetting to take one of my medications (that sucked), but all in all I didn’t let either of those things change the fact that I beat cancer, and that I was able to get on a plane and live my life!

Once again, I feel so incredibly blessed, lucky, honored, amazed and joyful.

The ability to do something that filled me with strength and happiness was indeed empowering. I missed my husband and children, of course, but they loved hearing the stories of our adventures.

So Keith and I continue to live in the present, cherish our time together and vow to make memories and strengthen our relationships with each other and our children.

Our next trip is a family one to London for Christmas. This trip is something that we have talked about for 18 years and have put off for various reasons. No more of that! We realize that the importance of living your best life every day is doing things that you have talked yourself out of for years, be it travel, pushing your boundaries, learning a new hobby, or conquering a fear.

So, as I travel through life I will continue to challenge myself, revel in my strengths, deal with my struggles and live with gratitude. I challenge you to plan something that you have put off for way too long. Trust me, it will be worth every minute!

Make it a GREAT day!

 

10/18/19

I arrived at the surgery check-in room at 6:00 am on April 17^th just 6 months ago. I was amazed again by the number of people in the waiting room.

 

The night before, Keith and I lay in bed. We cried and laughed and loved, hoping that it was not the last time. We woke with nervousness and excitement, Keith constantly reassuring me that all was going to go well. We knocked on the door next to us to make sure my mom and sister were awake as well. Of course, they were up and waiting.

 

As we made our way to the 6^th floor of the hospital to check-in, I remember being a bit anxious, but not scared or nervous. After checking in we were told to wait in a certain part of the waiting room, it was the name of a flower, Lavender or Magnolia? I don’t remember. So we sat, made small talk, and waited. It wasn’t long before my name was called. I was allowed one person to come back with me.

 

Keith and I headed back to the room. When we got back into the hospital I remember rows and rows of small “rooms” made of just curtains for walls. This is how hospitals give you privacy and make the most of their space I am thinking because I have been in a lot of hospitals and this has been the case.

 

The nurse walked us past all of the curtains into a big room, with actual walls and a real door. The room was big, and I had my own bathroom……I began to think, hmmmmmmm. She checked me in, lots of questions, “Why are you here?” “What is being done today?” Name, birthday? With a kind smile and soft touch, she was gone, only to hold the door for the long line of people that came in to see me.

 

First, it was the Anesthesia team, the head of Anesthesia was a tall man. He walked in and towered over my bedside, but his smile won me over. He began to explain that no one else should touch me with a needle, that no one would be running any lines except for him and that he would be with me the whole time. He introduced me to his assistant and they slowly started to explain the level of anesthesia that would be administered and where he would be placing lines. 2 in my right hand, 2 in my left, one in my neck and possibly one in my leg. This was on top of a few other lines that would need to be placed for other things. Keith and I listened (kind of) and held hands, I mentioned to Keith to switch with Oriana so she could listen to all of the medical mumble-jumble (she’s the medically minded one). The doctor stopped. “What? You have more family here?” I let him know that my mom and sister were in the waiting room and that we could only bring one person back. He instructed Keith to go get them and told the assistant to grab another chair.

 

In moments Keith was back and we were all together again. He departed after explaining everything to us and more medical professionals came in. Over and over again I explained why I was there, and what the procedure was.

 

We enjoyed our private room and the hour we spent in it. Soon the tall man came back and let us know that the surgeons were almost ready and that he would be starting something to make me “relax.”  Keith kissed me, my mom wiped tears off her face and leaned in to let me know how much she loved me. Oriana told me to go kick some ass, or something encouraging like that…..the “relaxing” liquid was already flowing and I remember saying something like ….. “Someone slipped me a mickey!”  Down the hall I rolled, lights everywhere, people talking, gentle hands, warm blankets...

 

The next day when I woke up I was in the ICU.

 

I remembered waking up after surgery, remembered seeing my family, hearing the doctors and I knew that the surgery was successful. My new hospital room was small and cozy. Keith slept on the chair next to me, and I woke up groggy. I immediately was aware that there was a tube coming out of my nose and that I had a catheter (2 things that I was not very fond of). My pain was low, but my arms were killing me.

 

The nurse walked in and let me know that we would be getting up and walking. Keith woke up and slowly we began to understand that we were past the surgery and that the real world was hitting us in the face. What? Walking? I couldn’t imagine standing up, but guess what? That is what I did, slowly of course.  Here is the problem, I had just had a 12-hour surgery, I was on lot’s of drugs, I hadn’t eaten in days and I was trying to walk.  Needless to say, I did not get very far!  That being said, I did it.

 

Today when I woke up I got out of bed by myself.

 

Last year on this day I couldn’t even stand by myself. Today I went to the bathroom, brushed my teeth and put my robe on…..all by myself. I know it doesn’t sound too exciting, but last year on this day I couldn’t do any of those things by myself. You see when your life is stripped away layer by layer due to trauma or crisis or illness, you are in need of others. Either to help you walk to the bathroom, or to take care of your children, or to feed you. It doesn’t matter why you need them, what matters is that they are there and all you have to do is accept their offering. This is harder for some than others I would imagine, but I learned quickly that the only way to heal was to accept help and fight like hell.

 

Today I will shower, drive my car, take a walk, work with my friends and know that last year on this day my life looked very different.

 

Thankfully, I had the strength to never give up, the support of so many and the will to live a full life.  The doctors told me that by today (6 months post op) I would begin to understand my “new normal.”  I would have to agree with them to a point.  My life is very different, but not just in a medical sense, my life is different in every aspect.  Gratefulness washes over me every day when I wake, as I sit and pray and meditate that gratefulness grows and by the time the sun is up I am once again in amazement of our beautiful world around us.

 

So here I go…..off on another adventure making today a great one. I am excited to welcome whatever comes my way…..knowing that I am so blessed to be able to accept it.

 

10/11/19

Before chemotherapy is administered you have to go through a battery of tests, appointments and of course either a small procedure of placing a pic line in (if they want to give you chemo quickly) or a larger procedure of surgically placing a port. All of these things are usually done outpatient at a hospital.

I am waking up this morning, always grateful, and with thoughts of my days a year ago. At this time last year, I was through my second round of chemotherapy which means I had had 8 days filled with fun at what I called the Chemo Spa. A memory of these chemo appointments is what I woke up with this morning.

Here's what I recall.

Once I was discharged from the hospital things moved fast.

I didn’t have an “official” diagnosis yet, but the wheels were in motion and multiple daily doctor visits were in full swing. They wanted to start chemo ASAP and so a pic line was ordered and off I went to Blake for the tests that they have to do to make sure that your body is able to endure the procedure as well as the toxic blast that they were about to begin.

I remember sitting in the waiting room before my EKG and sonogram of my heart (got to make sure the ticker is going to tick with all of the poison running through it).  My parents were with me. The outpatient waiting room was full and FREEZING. By now I was used to doctors' offices and we always came prepared, so I sat in my socks, sweat pants, long sleeve shirt, and sweatshirt.

My name was called and off I went. I don’t remember the technician’s name, but I remember his voice and his hair.  His voice was soft and deep, explaining everything that he was going to do and his hair was thick and wavy. He calmly spoke about the measurements that he would be taking of my heart, the pictures. None of it was invasive and I was myself, open and cracking jokes about my situation.

As soon as he began the sonogram of my heart I asked him if he could see the tumor. He moved the wand down my abdomen and began to show me the outline of the mass.  I remember thinking WOW!  Something that big is inside of me and I am not dead yet! His voice did not waver, but he was obviously surprised as he searched for the outline of the huge mass. It was then that he said something to me. His kind eyes found mine and he said “Just bumble through this for as long as you can.” I thought it was a funny thing to say—”bumble through,” but it stuck with me and I went back to his words often in my head. We talked and laughed through the procedure, and in no time it was over.  I thought, "Well I 'bumbled through that!'”.

The next day I was back. Same waiting room, different crowd.

My name was called again and I was brought back to have a pic line placed. I did not know much about what that was, and I really didn’t care to know, all I knew is that it would be used to administer my first round of chemo until they could get a port in.

To the back room I went and met up with yet another gentle and funny man who would be placing my line.  He introduced himself as David. He explained that the line would go in my upper right arm in the major vein there. He would thread the line into the inside of the vein and into my heart.

WHAT???? My heart??

I was for sure going to die now. Who the hell puts poison in their heart? David explained to me that the toxicity of the mixture they were going to give me was so strong, it needed to be administered in the heart due to the mass amount of blood that is pumped through the heart every second, therefore the chemo would quickly dissipate and be safe for my blood system.

It all sounded a bit crazy, but this is what we were doing so I lied down. The first shot to the arm was like the worst yellow jacket sting you could imagine. I think I even told him that. Thankfully that was all I felt because that shot was to numb my arm and area around it. The next feeling was a strange pressure. David told me to take a deep breath in (not so easy with a huge tumor sitting on your lungs) and to blow out on 3, we did this 3 times. I was exhausted. He successfully placed and taped the line on my arm.

“I will be right back. They have to take an x-ray of the line to make sure it's in the right place” He told me this as another team rolled a large machine in. He waited outside the curtain. The machine went around me as I sat up and in seconds I was done with the x-rays.  David walked back in with a worried look on his face.

“Mara….can you see me?” he said.

“What?” I answered, “Yes, I can see you fine.”

“Oh good, because the line ended up behind your eye!”  He smiled. A quick flash of terror came over me before I noticed that he was laughing. ”Haha very funny,” I said and we laughed together.

So when I woke up this morning grateful, I thought of these two kind men, their body language, and soft voices. Quiet confidence once again set the tone for my day and whatever comes—continue to laugh and love, and bumble through it for as long as I can. I guess you could say that it is a good mantra for life itself because none of us know what comes next. So why not make the most of whatever the day brings even if it is lemons. (That is another story!)

Last night I went to an orchestra concert.  I sat with my children and was given the gift of hearing beautiful and powerful music. I couldn't help feeling like the luckiest person in the room. Gratitude washed over me and tears dropped. My sweet boy got worried for a second and then realized that they were tears of joy.....I do that now.

Make it a great day!

 

9/20/19

"Scans are clear, body is healing and see you in 3 months"….that was the message we received the last days in Houston.

 

Once again, our prayers were answered.  Though, that isn't an exemption from having other tragedies, or from watching horrible things happen to good people.  That part of the journey is hard, the being okay, but knowing that so many are not okay. Life is wonderful but also challenging, and there is no guarantee about anything, ever, at all. For any of us. The big lessons are ones that we learn the hard way, unfortunately.

And tragedies do keep coming. Cancer hit again, a young, strong, beautiful mom with a 7-year-old daughter. The family is at Center Montessori and have been for years. I reached out hoping to help the process, or journey, whatever they want to call it. I am hopeful that she will fight as hard as she needs to, that she will weather the sickness and the exhaustion. I hope that she will try and find the joy in the days where all she can do is beg to sleep through them all, and I pray that her daughter comes through it knowing just how strong her momma is.

 

But tragedy isn’t just in the form of Cancer, it can be anything.

 

On the same day that I visited with the mom at the Chemo Spa (that’s what I call it), I went home to rest, only to be met with a phone call from Keith. One of his players had been in an accident on his motorcycle and he was on the way to the hospital.  Whenever I hear “motorcycle” I get nervous, as we have had a dear friend killed on his, so the phone call set my worry into motion. I slowed my mind down, told myself to let my worry go and to pray and send thoughts. So this is what I do, every day, in the morning, whenever I think of both the mom and the boy, around our dinner table, in the evening, when I am driving. It makes me remind myself that the importance is in each moment, that we have no idea what comes next, and that how we walk through life is so important.

As I continue to pray and send thoughts to two people I don’t know that well, I also send my thoughts out to the universe for all people suffering. There is nothing like your whole world changing in a second. That is something that no one can ever imagine or explain, much less be prepared for. So as you finish reading this, send someone positive thoughts or prayers, pass on the peace in your heart and know that by helping someone else that you are also helping yourself.

Make it a great day…..you are in charge!

 

9/12/19

It seems quite relevant to be in Houston this week, doing tests, seeing my doctors and reconnecting with the Cancer community.

 

This week last year, I was told that I had Leiomyosarcoma, a rare, reoccurring, incurable type of Cancer. I was told that the tumor was large and wrapped around multiple organs. I was told that it had metastasized to my liver and to my lung. I was told that the only hope was to go at it very aggressively—I began chemotherapy, 4 days a week for 8 hours a day.

 

I was basically told that it was not a good scenario and that I didn’t have long to live.

 

Those words came later, but this was the message that was sent to me via numerous doctors, except for one, Dr. Brian Berry, my oncologist, and friend. He partnered with Moffitt with the chemotherapy treatment but was never fatalistic or dark. When I was down, he explained to me that he had been researching and had a plan, and he never gave up. Weeks later when I returned to Moffitt and the chemo had done nothing, and the doctors there told us there was nothing else that could be done, and that I would live the rest of my life with a large tumor inside of me and on chemotherapy, I was crushed. That is not anything I would wish on anyone—to hear the words, “There is nothing else we can do.”

 

I called Dr. Berry, and he said, “That’s bullshit.” I didn’t know what he was talking about at first, the fact that a doctor would even say that to a patient when they only tried one thing, or that they were wrong, I did not care.  He slowly explained to me that he had plan A, B, and C and that getting to a specialist was the most important thing to do.

 

We began to research Sloan Kettering, MD Anderson, and Mayo. Keith reached out to friends who are doctors all over the country. Our friends reached out to their connections. We pounded the pavement and with the support of Dr. Berry, our research led to MD Anderson over and over. He explained that MD Anderson is the leading research hospital in the world and that for crazy cases they would do what no others would try. Our relationship with Houston began, a big city with lots of fancy cars, tons of money and two skylines, one of the downtown and one of the Medical Center where some of the best hospitals reside.

If you have been following my writing, you know that I have been back and forth many times to MD Anderson, that I found doctors there just like Dr. Berry. Doctors and surgeons who believed that there was something that could be done, and not only that but then they did it!

 

I am living without some major key organs, but I am good (healing still) but good.

 

That all being said, yesterday was September 11^th, my official “diagnosis day”, and the day of yet another CT scan and blood work.

 

This morning I go to see my Rockstar lead surgeon, Dr. Christina Roland, who led the team into an 11-hour surgery with only a 50% chance of success. I get to give her a hug, thank her once again and tell her how it is going. I will share my struggles—the stomach stuff, the random pains, the exhaustion. We will ask about each other’s children and laugh, we tend to laugh a lot, and then she will tell me what the scans show. My vision and prayers are that all is well, there is no sign of cancer and that I will be back in a few months.

 

But in the back of my little mind, there is always the thought of what if that is not the case, that it is back, or something is wrong. Well, if that is the case, then we do what we need to do to move on whether fighting or healing. I will continue to live my life to the fullest, wake up with a grateful heart every day and know that for some reason I was given another day……one day that so many are denied.

So, I am waking up thankful and grateful, and nervous and scared. I know it is going to be a great day and that all will be fine, and soon I will be home with my children, only to be booking more flights back to the land of oil.

 

Thanks to Dr. Berry, MD Anderson, my team of surgeons, the amazing nurses and countless others, I am given the chance to wake up every day ……. And oooh la la….life is good!

Peace

 

9/8/19

 

A year ago on this day, I had trouble waking up without the first thought being that I had cancer.

 

Well, this morning, I woke with gratitude in my heart. So I made a list of all of the people I am grateful for and let me tell you, it is a long list. One thing I am not that good at anymore is remembering things. I will blame it on Chemo for as long as I can. But as I made my list, I realized that I couldn’t rationally know each and every person or thing that I am grateful for, because the amount of support, thoughts, prayers, and love that has been sent to me over the past year (and is still happening) is boundless, un-ending…..impossible to imagine…..so I thought…I would write.

 

Dear anyone and everyone,

 

To those who have thought of me, to those who have prayed, to those who have sent cards, sent food, sent money, sent flowers, to those who have spoken about me to others leading them to think of me, to those who have placed me on prayer circles leading others to pray for me, to those who have hugged me, smiled at me, helped me up when I couldn’t stand, to those who have cared for my children, sent books and journals, to those who have cried for me, to those who have walked and screamed out loud WHY???, to those who have rallied around my husband for me, passed emails about me, who have supported my family, to those who have travelled far to visit, and to those who have walked down the street to just say hello, to those who have walked slowly with me, who have cared for me in the hospital, who have given me medical care, to those who have bathed me and fed me, to those who have rubbed my back, driven me places, cut my hair, to those who have laughed with me, stood by me when I was scared, to those who have assured me that everything was going to be ok when I had doubt, to those who never wavered in their love for me.

 

I thank you from the bottom of my heart. I am grateful for each and every one of you and I hope and pray that you can feel and understand the amount of gratitude I have in my heart. There are no words, nothing I can say to make anyone understand, it is just an overwhelming amazing feeling that encompasses my whole being. And so, I am grateful for you all, and for all that you have done and do.

 

I vow that I will live my life to the fullest, and most importantly, that I will touch someone, support others, love unconditionally and help those in need. I will continue to grow and challenge myself and never forget the unending love I’ve received that will wash over me for all of my days to come.

 

With a grateful heart—

Love Mara

 

 

9/7/19

 

On September 3^rd my parents arrived at the hospital, full of courage and hope, and strength. Of course, I could tell that they were scared and full of sadness that this was happening to their firstborn, but the comfort of being able to see them and have them hold me washed all of that away. My parents stayed through thick and thin, the good and the bad, and never spoke of leaving our side. They dropped their life, left their home and friends, and came to support Keith, their grandchildren, and me till whenever.

 

I woke up thinking of them today, of being a parent myself, and what it meant to us to have them here.

 

After the surgery and I was stronger, they went to Seattle where they could spend time with my sisters and their families, where they could relax and take ferries to wherever they wanted, but still be close enough if we needed them to come back.

 

Well today they go home to Chiavari, Italy, a place where I grew up spending summers, where they have meshed into the local life, where they love to wake up looking at the ocean, walk the streets and markets, hike the mountains, travel to new places just because and for my father, a chance to practice speaking Italian non-stop. I feel a sense of peace inside of me knowing that they will be home, not that they weren’t comfortable here (thanks to wonderful friends), or that their place in Seattle is not their home as well, but Chiavari in my mind is their home.

 

People often ask how I did it? How could I be so strong? And I think of my parents and my husband and my children and my whole extended family…

 

and I say….”How could I NOT do it? How could I NOT have the strength?”

 

When in trauma, people lift you up, support you to no end, send love and flowers, and boxes of goodies. They make food for you, donate money to help and so much more, but all of that only shows you how much love you have coming your way. I had to believe it, feel it and know it in my heart.

 

Of course, I always knew and felt the love I’d been given, which brings forth memories of my childhood and what my parents REALLY did.

 

Yes they came when I was sick, and yes, they took care of everything, and yes they cared for my children, cleaned my house, organized my medical bills and documents, travelled with us when we needed them and sat in waiting rooms for hours and hours, but what they really did started years ago, possibly before I was even born.

 

They decided to parent me with unconditional love and support. They chose not to hover over me, and let me make my own decisions. They disciplined me and never made excuses for me or my behavior. They were firm but loving, and when adversity hit our family, they were honest and made us all deal with it together.

 

Oh and let me tell you adversity hit.

 

As a poor family living in the inner city of Milwaukee Wisconsin, with radical parents who did not sit down in the face of struggle or walk past someone in trouble, adversity hit. I look back now on how many things happened, and I think “Holy moly!” I look at our children and know that my journey has made them stronger and will shape who they become. So, I know that all of our experiences do this, but I also recognize now sometimes we do not see the meaning in tough experiences until we are older.

 

I remember one horrible day in particular. Now, this experience is one of the toughest times that our family endured. It showed me what a community is, how strong my parents were and that evil lurked everywhere.

 

I was almost 10, my sister Giovannina was 4 or so, and my mother was pregnant with Oriana, but she was late, and huge and ready to move on. It was winter in Milwaukee which meant it was FREEZING…..literally. We lived in the inner city (27th and Juneau). Remember, we did not have a ton of money so going out to eat was a big thing. My parents had the idea that going to get spicy food would speed up the progress of the pregnancy, or possibly get something moving, so we all loaded up into our van and braved the cold to go to a little Asian restaurant in the basement of a building not far away. The snowdrifts were abundant and the sidewalks slippery, so dad dropped us off at the door and went to park. As my mom hobbled down the stairs, we were greeted with warm faces and a great aroma. I don’t remember much about the dinner, although I am sure we ate well and that it was delicious. My sister had a habit of climbing under the table and falling asleep— this is what she did promptly after finishing dinner.

 

I remember that our van was parked a block away and that my dad wanted to bring the car closer for my mother, so he and I climbed the stairs to the street and into the darkness to get the car.

 

As soon as we opened the door we heard screaming from across the street.

 

A woman was being attacked. It was dark and I couldn’t see much but I heard the fear in her screams. I remember being afraid. My father pushed me towards the van and told me to get in and stay there. Quickly, he opened the side sliding door. I jumped in and laid down on the floor of the van. I heard my dad yelling to leave the woman alone. I heard the woman screaming. I heard other men’s voices yelling, and then the woman was at my side door opening it. Then I heard louder than anything I think I have ever heard, three explosions or pops. I didn’t know what the sound was at the exact moment, but when the woman started to scream again, I knew something was very wrong. I just remember looking at the woman and her face contorted with fear. I crawled towards her and dared to look out of the window of the van. My dad was on the other side of the street. I think he was on his knees. I don’t completely remember, but he wasn’t moving. The woman moved towards him. I was confused, scared, and realized that my father had just been shot.

 

Gunshots were something that we heard living in our neighborhood, not crazy often, but often enough to know what they were.

 

The woman helped my dad up and they started to walk towards the van. I jumped out of the van and ran to my dad. He was holding his side and the blood was everywhere. He put his hand on my shoulder and said he was okay, not to worry.

 

As a 10-year-old the scene was life-shattering, the things running through my head I am sure were frightening, although as I write this I can’t remember them.

 

We burst into the door leading down to the restaurant. They had heard the gunshots and had already called the police. People were rushing up to help my dad and the woman. I was pulled away from my dad and brought to the table where my sister was now waking up. My mother was in shock. The staff quickly locked the doors and I remember them standing on chairs to lock the small rectangular windows that in the summer let in small breezes.

 

Dad is sitting down, he is covered in blood. I remember the blood squirting out of his body, the staff trying to mop it up. I am holding Giovannina and we are crying. The woman sits with us, tells us how brave our father is, how he saved her and how he is going to be okay. Remember, this is a time of no cell phones, no computers. I don’t even know if 911 was a thing yet. Remember our home and this restaurant were in the hood (that’s what I called it)—the ghetto, or whatever you want to call it, so, unfortunately, the police did not quickly respond sometimes.

 

It seemed a lifetime for anyone to come, but come they did and soon we were all swept away……my father in an ambulance because he needed major medical attention and quickly. I think my mom went with him. Somehow our community found out what happened and we were sent away with a dear friend.

 

The rest of that night is a blur. I am sure that we slept somewhere. My mother came home later in the night or the next day. We did not have a TV (that is another story) but some of the neighbors told us that our dad was a hero and that he was all over the news. I could have cared less, I just wanted him home.

 

Our community wrapped us in love, food, boxes of goodies, support and money…..remember this is what community does when you have trauma. I remember waking up one morning and going to the bathroom. When I went to get toilet paper, the roll started spitting out dollar bills. Yes, one of our friends unrolled and then re-rolled a roll of toilet paper filled with $1, $5 and $10 dollar bills, I remember yelling for Giovannina to come and see!

 

When we actually got to go to the hospital to visit my dad we were all excited. We got there just as a number of reporters were interviewing my father. I heard one recount the events of how he risked his life to help another and then asked him a question, “Would you do the same thing, knowing now that you were shot?” or something like that. I don’t remember the exact question, but I do remember my father’s response. He calmly looked at the reporter and said, “Of course, I would do it over and over again.” I clearly remember the anger rising up inside me, WHAT? How could he say that? What in the world was he thinking? He could have died?

 

I don’t remember how long I was mad or if I ever even told him when I was young (he knows now) but I later remember my mother must have known my feelings. She didn’t say anything then, but later she talked to me about the power of helping people and of being strong, no matter what.

 

I wasn’t very receptive to what felt like a “lecture,” but now I see the value. It was in that realization I learned my parents were the most wonderful parents ever. I didn’t feel that way all of the time, I was a teenager at some point, but as I grew older (and wiser) I began to see and know that everything they did was to teach my sisters and me to be strong women, strong human beings, compassionate and kind, and to be able to stand up strong in the face of adversity and trauma. I attribute my strength now to what my parents showed me as I grew up. I know I didn’t realize these attributes all at once, but I believe what they gave us now.

 

Without problems, trauma, adversity we cannot grow. We cannot challenge ourselves. We cannot see our whole potential or completely value who we are. Although I do not wish anything bad for anyone, I do hope that as we continue to parent or grow we begin to see the value of letting our children experience adversity, letting them make mistakes, allowing them to figure out how to solve problems, letting them live without us always doing everything for them. I say this because it is something that I struggle with, even with what I’ve learned.  When faced with not having life, all I wanted to do is hold my children and take care of them. I will continue to work on letting my children grow without me helping them, letting them solve their own problems while knowing that if I do this when things hit them, later on, they will be better equipped to deal with it.

 

A wise woman once told me that goodness is “caught not taught,” so I will continue to spread goodness and kindness and hope. I will send my parents away with a ton of love showering over them. I hope that I have shown them enough about how much all of their lessons have meant to me, and how their strength and values have made me the woman I am today. If not….well, they are hearing it again!

 

If you are a parent, revel in the beauty of watching your children struggle. Let them deal with their mistakes and if they are lucky they will “catch” a lot of what you put out into the universe!

 

PEACE (that’s from my daddy)

 

 

9/6/19

 

The days continue to pass and slowly I am aware that we will arrive at the date that I was officially diagnosed, September 11^th.  A date already seared in everyone’s mind for a lifetime by the terror that swept our country.

 

Now, this date also holds another meaning to me and my loved ones. This day where the unthinkable comes true, the day when all of my fears are given strength, a day when my ears hear what no ears should ever hear, a day when my whole self was struck by lightning. This lightning I call Cancer continues to strike others daily, so many times that none of us ever want to acknowledge, but it continues, over and over. Some will make it through, some will not.

 

Before I was released from the hospital on September 4^th last year, many doctors frequented my room. Some invited, some not, some friendly, some awkward, some caring and others void of any emotion. I found it interesting that they all came with different ideas, opinions, thoughts and some of them even different diagnoses. One thing they all had in common was that the mass was “very large” and the prognosis was “very bad.”

 

I remember one doctor in particular— not his name, or even his face, but I remember his presence. He walked in briskly as Keith and I sat alone just trying to catch our breath. He was unannounced and we had no idea who he was. He wore khaki pants, a Columbia fishing shirt, and brown sandals. The sandals struck me so this is what I focused on while he talked. His hair was disheveled and his voice was scratchy. Today, I cannot recall his face for the life of me. He quickly introduced himself and Keith jumped up to grab the notebook where he had been writing everything down. The doctor informed us that he had seen the CAT scan and that I had Lymphoma. He was sure of it. We needed to act fast, Lymphoma was serious, and with a mass of my size, it was unlikely that anything would work.

 

Keith and I are holding hands now and up until that moment, no one had given my “MASS” a name yet.  Of course, the white elephant in the room was that it was Cancer, but no one had referred to it in that manner, much less told me that nothing would work (yet). As quickly as he entered, he stood, said that he would have his partner stop by and schedule a follow-up appointment with him, and off he went.

 

WHAT THE HELL WAS THAT was all I could think about.

 

Keith knew what I was thinking because he picked up the phone, kissed my forehead and told me not to worry, that he was on it. Knowing so many doctors in the community is valuable in so many ways. Within minutes Keith knew the name of the doctor and made sure that he did not send anyone to follow up and asked that he not return.

 

I remember feeling a bit grateful though, not for his crappy bedside manner, or gruff and inappropriate way of giving information, but grateful that the word was out in the open. Lymphoma (although that is not what I had), CANCER, whatever-you-want-to-call-it is what the mass was and nothing was going to change that.

 

8/30/19

 

So here I am, almost a year to the day of learning that I had a large mass in my stomach. If you know me well, you also know that my memory wasn’t always the strongest, and now post-chemo, cancer and months of being sick I have to say that all of that has taken its toll on my memory even more. However, I don’t think I will ever forget the days leading up to my hospitalization and later my diagnosis.

 

This is what happened almost a year ago.

 

It was a Thursday, just like today, and my day started just as it had for years, waking up, changing the laundry, unloading and loading the dishwasher, packing lunches, making coffee, getting kids out the door, and then finally getting myself ready to go to work. An uncomfortable feeling in my torso was lingering, as it had for the past year or so. Doctors did blood tests, I had tests including a colonoscopy only to find nothing wrong. I was told to take Gas-X or Rolaids to relieve the bloating, but this Thursday morning it seemed a bit worse, and I was exhausted, which was not like me.

 

Off to work I went, kids off to school, meetings, emails, and more exhaustion. By noon I told my colleagues that I was headed home to rest, that I must be fighting something off. I remember Keith coming home and finding me in bed (very unlike me). He was surprised and worried, but I assured him that I was fine, just tired. I stayed in bed that day from around 1:00 to 8:00 pm. Little did I know that this would just be the beginning of my long affair with my pillow!

 

Waking up Friday was the same drill. By the time I finished my routine and was on the way to work, I noticed that my breathing was weird, short and labored. Again, I chalked it up to fighting something off and pushed on to work, although it did not take long for me to leave again to retreat to my bed. This time I called Keith and let him know that I was headed home. He told me to feel better and asked if there was anything he could do for me. All I wanted to do was crawl in bed and sleep, so that is what I did.

 

Friday night is typically family night, we go out to eat, or watch a movie together, however, I could not even budge from the darkness of my room. Breathing didn’t hurt but it was strange and a bit scary. When it did not go away, Keith insisted on taking me to the ER on Saturday morning. I hesitantly agreed.

 

Well, let me tell you something, if you ever have to go to the ER on a Saturday, just let them know you are having shortness of breath—they get you in before you can tell them anymore.

 

Next thing I know I am in a room hooked up to machines monitoring my heartbeat. All is well, my heart is okay. The ER doctor began to do a full examination and I began to tell my story of not feeling well for quite some time. I talked about the weight gain, the bloating, the change in my bowel movements, etc.  He palpitated my abdomen and indicated that he thought that my gall bladder needed to be taken out. YAHOO!!  Are you kidding me? All of this time and it was my gall bladder? Easy peasy mac and cheesy! Let’s get this thing rolling……. I sent Keith home to get Ale to a soccer game—he was hesitant to go but I assured him that I would be checked in, have a short surgical procedure and would be out in a few days. Keith’s plan was to go get Ale sorted out and then come back with the kids before the surgery. I was on my way to feeling better and I finally felt as though we had figured out why I had felt so crappy.

 

WRONG!!!!!

 

Keith left as I was pushed out of the ER to have a sonogram. Well, I was not a medically minded individual when this all started, but I had a pretty good idea where my gall bladder was located. A kind, soft-spoken older woman greeted me with a sweet smile and explained to me what she would be doing. The cold gel felt slimy on my protruding abdomen and as she began to roll the camera across my body it became quite obvious that although she began by looking at my gall bladder, she was not anywhere near my gall bladder after the first ten seconds. As we all know, the people that administer those types of tests can’t tell you anything, but the look on her face gave it away. She excused herself and stepped out of the room. I heard her make a phone call. When she came back she said, “Don’t worry honey, I just have to get a few more pictures.”

 

Well, worry is not my thing. I don’t know why, but I am not a worrier, however, I have to honestly say that “scared as hell” was my thinking at that moment. I smiled at her and said, “Okay.” All I could think was that Keith had left and I would be rolled back into a room and alone.

She finished up and I was rolled back to the ER, to my room, or should I say closet with a chair on one side.  In the room next to me I could hear a young man who was dropped off due to a drug overdose. My way of staying calm was to listen to as many conversations around me as I waited for the doctor to return. The paranoid, drugged up young man was handcuffed to the bed and yelling that someone was after him. The sweet nurses tried to calm him, and the officers outside the door shushed him. I secretly didn’t want him to stop ranting and raving for it might mean that I might hear my own mind reeling in crazy thoughts.

 

Ten minutes passed. The drugged young man was wheeled out. And then I saw two doctors coming into my room, both looking a bit concerned. One was the doctor that said it was my gall bladder and he started talking first.

 

“So Mara, what do you do?” the doctor asked as he walked slowly into my room. I responded, “I can tell you what I don’t do ….. small talk….what is going on?”

 

“Well Mara, it is not your gall bladder. Unfortunately, there is a large mass in your stomach.” Something hit me. I guess maybe it was shock….I could barely speak. “Large mass” was echoing in my head over and over.

 

The other doctor chimed in, “How long have you been feeling abnormal?”

 

Deep breath Mara. I went through the year again, the frequent trips to the doctor, the colonoscopy, the uterine biopsy, the blood tests, all to find nothing abnormal. Just writing this, I feel my blood rushing and my heart is pumping, just like it did when I heard those words for the first time “large mass.”

 

The doctors excused themselves and I reached for my phone. All I wanted to do was leave, run out of the ER, forget that I came and get home to my bed. Keith answered and I could not speak. Through choked back tears I told him that it was a mass, not my gall bladder. He was calm and said he was coming right back. I clenched the phone longing for his arms to be holding me. He repeated over and over, “I am coming honey, everything is going to be okay.”

 

Now I see more of them, 4 doctors walking towards my room, 2 with the ER scrubs and 2 with white jackets. Oh shit I think in my head, this is not good!

They explain to me that the mass is large and they need to get a better picture of it so they will need me to drink some contrast so they can do a CAT scan (little did I know this was the first of many to come).

 

I listen and look at them. I don’t have any questions. I can’t even open my mouth because I am just focusing on getting through the next few minutes.

 

As I look back, I wonder if this is when I really learned the lesson of living in the moment. I always have lived this way, but not in the way that I did on September 1^st lying in the hospital. My mind was wild, so I started talking to myself, even as the doctors were speaking with me: “Mara, you’ve got this, deep breaths, calm yourself down, everything is going to be okay” over and over in my head. The doctors stopped talking and leave with a gentle touch on my shoulder.  As I gain control of my mind and I focus myself into realization, I begin to make a few phone calls.

 

First my parents. Again I explain through tears where I am and what has been found. I let them know that when we have more information that I will call them. Then some good friends in Bradenton call. Thankfully they are in the medical field or are doctors. My tears are gone and I am in fight mode, giving information and communicating what is going on.

 

The sweet nurse that checked me in, wheeled me back and forth to the sonogram and who has brought me blankets is now at my door.

 

“Do you like BANANA?”  Okay – for real? BANANA ???? No, I HATE BANANA!! I have never liked BANANA, I don’t like the look or texture of them, I can’t stand peeling them much less their smell and taste.

 

“No, actually I hate banana,” I say calmly with a smile on my face. “But if that is what it is then let’s do this.” The young girl is apologetic, there are no more flavors. I call Keith and I am actually laughing now and explaining that I have to drink 2 bottles of nasty BANANA drink!! He and I laugh and he talks me through with these words, “Honey, it’s strawberry. You love strawberry.” He says this over and over.

 

I get the drink down and continue to lie in my dark closet. It has been over an hour and the word is out that I am in the hospital and my phone is ringing off the hook, I take calls from people that I want to talk to and pass on the ones that I don’t. New people enter my room and let me know that they are checking me into the hospital. I am rolled upstairs to a floor I no longer remember and a shared room where there is a curtain that separates me from an elderly woman, who has visitors. She’s hooked up to a lot of machines but the smile on her face is tender and kind. Time stands still and I find myself gazing out of the window in the cramped room, wishing that all was back to normal.

 

Little did I know that Keith and the kids were trying to see me in the ER when I was being transferred upstairs. It took a while but they were by my side not long after I was wheeled up. Alessandro’s face was locked in a petrified look and he was afraid to touch me. Kiara looked worried and scared. There were no answers and not a lot of info, so Keith and I kept it simple. “They found a mass in my stomach and the doctors are going to figure out how to get it out.” They seemed okay with this information and settled at the end of my bed. Another nurse came in and made the comment that we must know someone because I was being moved to my own room on one of the top floors. Whew, I think, privacy!

 

When I get settled upstairs, I convince my family to go and get something to eat. When they are gone, I take a call from a good friend who is also a doctor. He has looked at the scans and he is honest and frank with me, which is exactly what I needed at that moment.

 

“It’s not good Mara. It’s large, I mean really large, and it is wrapped around a lot of your internal organs. No one in this area is equipped to operate on it.” I thank him and ask what is next. He indicates that I should stay in the hospital for a few days so they can run more tests, then suggests that I head to Tampa where he had already reached out to surgeons.

 

I called Keith and told him we needed to talk. Kiara and Ale headed home and Keith and I spent time together processing.  Again, his constant sentence was, “ Honey, everything is going to be okay.”  And you know what? I believed him. I had no idea what was to come, no idea what was inside of me, no idea of the number of doctors I would see, numbers of times I would be poked and prodded, I just knew that I believed him when he said that everything would be okay.

 

Over the next 4 days, after multiple doctors, tons of tests, the incoming of my family, and friends and colleagues filling my room with flowers, balloons, cards, treats, books, one thing stuck with me in my soul. Deep down, buried and covered over by the love that washed over me, I knew that I had a long fight ahead. I knew that it was going to be a fight for my life. I knew it was not going to be easy, but I also knew that I would do anything and everything to make sure that I was able to watch my children grow up, hold my husband every day, and do more of what I loved.

 

I knew that this was the beginning of a long journey— one that I continue to be on one year later.

 

Peace

 

8/13/19

Balance…is a word that is used so many ways.  The dictionary definition is “an even distribution of weight enabling someone or something to remain upright and steady or a condition in which different elements are equal or in the correct proportions.”

Regardless if we are talking about objects or ourselves as humans, sometimes the balancing act is not so easy.  So, as I continue to heal and begin to tread back into the waters of my “regular life” I am beginning to see that things are not so “regular” for me anymore.  Thankfully, this is not a bad thing. I mean how fun is regular!  It’s just a little like walking into the ocean— the ground beneath your feet is not 100% stable. At any minute you could drop off or be swept out to sea with the currents, or you could sink in the sand and be stuck.

My treading in has brought me back to being able to be more present physically and mentally for my children as they start school, being able to be home alone while Keith travels for work, something he loves to do while being petrified to leave me, and it has brought me back to work. All of this brings me to figuring out my balancing act.

For you see, when you love your life and have been given another chance at it, you want to run and celebrate, and do as much as you can. But when physically that is not an option, it gets a bit difficult.

So, I wake up and focus my mind on myself, not easy if I do say so myself.  Think about it, really think…..when you wake in the morning what is your first thought?

If you are a parent it may be about your children. Are they awake yet? Are they hungry? Did I pack lunches? Or maybe it is about something you have to do…..or you are just waking in anticipation of your alarm ringing any second and the responsibilities of your day start to flood your mind.

For me the last 11 months, my first thought was FIGHT, don’t give up ….. keep going, and now that I am “doing good” my thoughts have changed. It hit me a few weeks ago, and I have been working on it (it’s not easy) but I began waking up with my mind reeling of things I had to do, meetings I needed to be at, school supplies we had to purchase, college applications that Kiara wanted support with, soccer schedules for Alessandro and other things about work or my teachers.

Here is the thing…..none of these thoughts were or are bad, they are my life, my children, my world, my passions……but then I began to think, when did the shift occur?  Is it that I am just feeling “better” so I don’t have to wake up in fight mode anymore? Or is it that when I treaded in that I dropped off and I am just trying to keep my head above water?  Whatever the reason is, what I can tell you is that I am shifting…..or at least trying, because what I do know is that while I was sick, it was hard, and horrible and challenging…..but it taught me to put my self-care first, and that somehow, even with the hard way of learning that lesson, I'm surprised that I so quickly could go back to thinking that other things were more important.

Do I sound selfish? I kind of feel that way, but deep down I know that in order to be my best self  I have to be selfish.  I have to let go of the expectations that are put on mothers, or women, or just what I have put on myself. I want to be healthy, I want to live a long strong life. I want to see my children grow into amazing people. I want to grow old with my husband and I want to continue to do the things I love to do.

So, I reach for balance. I tread carefully making sure my feet sink into the sand just enough to keep me balanced and I work on waking up and having my first thought be about how I work at staying healthy, how I can nourish my soul and my mind, how I can do all I love to do without compromising my health. I have not found out what that balance is just yet, but I am determined to figure it out.

This is my hope for all of you …… so I challenge you …. When you wake up in the morning start to recognize what your first thoughts are about….do you grab your phone? Or take a deep breath?  Do you jump up to take care of someone else, or do you take time journaling for yourself? There is no right or wrong thing to do, whatever you do is just fine…..but my goal is to find a balance between the sick and the healing, between the fighting and the living, so I can continue to move toward my best self.

For this life that we live is a gift and every day  given is the chance to reinvent ourselves, so this morning as I head to doctor’s appointments and some meetings, I will make sure that I tread carefully and enjoy the waters that I am given the gift of standing in, I will enjoy the breeze and the splashing of the sea and I will take my days one day at a time, remembering that this is all we have.

 

8/6/2019

As I began writing this morning it hit me that I have not done it in too long, the last date in my journal is July 23^rd.  Can it actually be August? How is it possible? It always amazes me how the time passes. I once again am reminded that taking care of myself is so important, and writing is something that has brought me peace and healing…..so I can not neglect it!!  However, as I wind down a summer full of doctors visits and recovery I find myself longing to feel even better than I do, that’s the impatience in me....I’m continuing to work on it! I don’t feel bad, but my energy is not where I would like it and my body is not the same. I continue to remind myself that it’s not even been 4 months since my surgery, doctors told me not to expect much for 6 months. So I focus on what is in the present and what I’m doing good with.....my endocrine Dr's at MDA say I’m doing good with my sugars, and I’m hopefully heading towards a pump by the end of September.  I met a new Endocrine doctor who I am switching to who is way more current with all of the technology that makes being a T1D a bit easier.  He took me through my education and clarified some things that I believe I have been doing.   My levels are like a roller coaster, and he called it “chasing numbers”.  One thing we (Keith and I) are a bit obsessed about is checking my glucose, he indicated that with all of the checking I am getting false readings due to getting readings before the insulin even hits my body, this of gives us high readings, and therefore does make us a bit nervous……but were going to get  better. Thankfully I am avoiding any “lows” which is hypoglycemia when I do dip, I get shaky and dizzy, but a quick sugar snack fixes that usually within 15 min. The “highs” are what gets me....they give me headaches and make me lethargic and hot! My new doctor has changed my long-acting insulin so hopefully, this will help with the daily highs that I am battling.  Some diabetics I’ve spoken to me say that this is just the way it is and I’ll get used to it. We shall see....I’m determined to do better. On another note, my port is out and the last of my incisions is slowly healing. The scar that lines my torso needs a lot of massaging, but it’s not tender to the touch anymore. Sitting for a long time is challenging, so I get up a lot and stretch. Slowly this will all get better I know.

I’ve been walking most days and that makes me feel great. I remind myself to accept where I am physically and to just focus on getting stronger. The walking not only helps my body it does wonders for my mind. Lately, I find myself walking and meditating and/or praying. Walking meditation is one I learned early on from my dear friend. It’s easy and calming, and one kind of meditation that I rely on daily now.

Last weekend we had the gift of spending time with family. I loved getting up in the morning and taking Kennedy (one of the new second cousins) for a walk. As I pushed the stroller around not only did I get to meditate, I also got to observe the gift of life that I’ve been given. Kennedy ooohed and aahed as she watched the world around her, we listened to birds, heard the bullfrog and sang songs.  As I stopped on a bridge to do push-ups and squats, all I saw was her sweet face and heard only her giggles. The evenings were filled with family cookouts and more playing with new cousins. Lucas (our energetic 4yr old second cousin) was hesitant at first to hang with new people, but soon enough we were playing with stuffed animals or running outside playing hide and seek. Logan, the youngest new cousin at 5 months, sat and watched it all from the laps of those passing him along. As the weekend passed by I gave thanks that I was given the chance to see our family. I gave thanks for having the ability to sit on the floor playing, thanks to that I am strong enough to walk around and thanks to that I continue to grow stronger.

All weekend my family asked all kinds of questions regarding my journey, the surgery, chemo, my recovery and more. We talked and I shared all of my stories. As I emerge on the other side of this journey, I begin to realize that although my body is done with the assault of Cancer, my mind is now just processing everything that I endured over the past 11 months. I am confident that through my processing I will become stronger and I vow to support all of those people I encounter along the way. A new phrase has been ringing in my ears lately....one that is so relevant always...

Pay it forward.....so this is what I will do……pay it forward to those who are in need, those who are healthy and those who are battling some adversity, this is another way that I am positive will help my healing and processing.  So go make it a great day and pay it forward (could you imagine what would happen if we all started doing that every day???)

Peace

 

7/23/19

Another procedure....you would think after so many of them I would be used to it, or not bothered by it, but as I sit in the waiting room (again) I feel anxious and a tad nervous. Sleep doesn’t come easy the night before a surgical procedure, at least not for me, and your mind goes a bit non stop, so, unfortunately, that was the case for me.....the thoughts were running rampant and I feel like I tried a hundred different times to calm myself, meditate etc....so I just decided to concentrate on breathing.....in and out....I gave my mind the job of keeping track of my breaths and soon I began to relax. I think I fell asleep, maybe, maybe not. Either way, I woke up ready for my procedure, but still a little nervous. I can’t pin down why, and as I write about it I still don’t know. Maybe because this procedure somehow marks the end of this phase of my journey. A journey that has stolen my life as I knew it, but also gave me a new and different life full of gifts, that will be part of my “new life” from now till I leave the Earth.

Many of my doctors asked if I was sure that I wanted to take my port out, the device that made chemo infusions “easier”. They indicated that the port could stay in for years and could be used “if it returns”. My answer to that was ....”Yes, I’m sure, it’s not coming back.”

So here I am ready for the last step in this phase of the journey. I say “this phase” because my health has changed and I am being monitored extremely closely by MDA, and moving forward the next phase is continuing to get proficient as a Type 1 Diabetic and learning how to gain strength by training, etc while managing my T1D. So I’m sure there will be many phases of this journey and to be quite honest I don’t know if I ever want it to end, as it is now part of me, who I am, how I look at things, my priorities, etc. So I accept the phases and revel in the beauty and strength of our bodies. It’s quite amazing how they heal!

I’m ready to have the port removed...nervous or not and that’s a good thing because....they are calling my name!

I’m back and now I don’t have a port in my body! Yahoo yippee!
Another phase checked off!

7/4/19

I was born on July 6^th. Yes, that means I turn 50 on Saturday and as a child I always thought that having the 4^th of July right before my birthday was so cool. I would pretend that the fireworks were all for me and that people all over the country were celebrating my birthday.  As I got older I decided it was the kickoff to my birthday and made it into the first day of a grand celebration.

Then I remember feeling “old,” not quite sure when this happened, but I have a memory of my sisters and me getting ready for a night on the town in our bedroom in Chiavari, Italy.  Chiavari is where we spent many summers, and needless to say, 3 sisters in Chiavari is always a ton of fun! I can’t remember where my parents were, maybe sitting on the balcony taking in the ocean view with a glass of wine, or walking the streets with the locals.

I was standing in front of the mirror putting on makeup, when I remember stating that I was getting old (I think I was probably 19 or 20),  or I looked old or something like this (we’ve all done it I am sure). I must have been talking out loud because my sister Giovannina yelled from the bathroom, “Mara, you are NOT old!” and Oriana was lying on the bed where she confirmed Giovannina’s shout.  Then slowly our Nonna walked into our room. She was quiet on her feet and appeared when you would least expect it, not like sneaking up on you, but just there, with her loving eyes and soft face. She began to say something that I had heard her say many times before, her strong accent and somewhat broken English peaked through as she touched my face and said,

“Mara, getting old is a privilege denied to many.”

I leaned into her hand and waited for the cheek pinch, instead, she leaned in and kissed me. She stayed in the room for a while, observing her 3 granddaughters putting on dresses and makeup and laughing.

Our Nonna was an observer, she loved to watch. She watched while we got ready and smiled.  The sentence that she spoke rang true to me then as it does now.

A privilege…..denied to many.

Many of my Nonna’s sayings and wisdom helped to build the person I am now. I can hear my mother saying, ”Your Nonna used to say...” or “Nonna would say...” but that saying, “Getting old is a privilege denied to many” not only was said regularly in our household but also posted on the refrigerator at our farmhouse for all who came to see. It was typed (yep, like typewriter typed) on a white rectangular label and stuck on a photo of my Nonna and our dear friend's mother, both who in the picture were in their 80’s.  They stood in our farm’s garden with huge smiles on their face, not worrying a bit about their hardened hands, wrinkles or grey hair, both looking more beautiful than any woman I remember seeing.

And so here I sit, getting ready to turn 50 years old. My Nonna has been gone for too long, but her wisdom and love still occupy a piece of my heart, and she still observes from afar I am sure.

The sayings turned into life lessons that have helped me conquer many things in my life. Over this cancer journey, I could feel my Nonna stronger than ever.

Maybe it was because I needed to feel the love and support of everyone who loved me, and so my grandparents came back to me with a vengeance, strong and steadfast, sending me strength and love constantly, and not leaving my side.  Or maybe it was because during my journey I began to truly understand what it means to live life, without worrying about the future or the past, just living for what today brings.
All of my grandparents did that so gracefully. Or maybe they were always there supporting me, only now I see clearly.

Whatever the reason, I revel in the memories of my grandparents, I strive to continue to learn from their sayings and love, and I think I appreciate them more than I ever had when they were on this earth.

So I  celebrate our country's independence, I  celebrate my 50^th birthday, and I will remember to honor growing old, to embrace it and love myself no matter what color my hair, how many wrinkles I have or the fact that my body is a little soft. I will think of the times I was blessed enough to celebrate these things with my grandparents.

Here is the reality. I am here, I am growing stronger every day, and if I am lucky enough to become old, then I am truly lucky.  May we all find the pleasure in our days, may we spread love and support, and may we enjoy observing our beautiful lives, just as they are in this minute.

Happy Birthday USA, and to me too….because fireworks to kick off my birthday weekend is pretty cool!! Tee-hee!!!

 

Photograph - Mara at Key to Life studio.

June 23, 2019

Days fly by and my healing continues.

 

Life begins to settle into some sort of pattern, or so I think, remembering that we are not in control, but only try to be. I continue to put myself first, but do feel the strings of mothering, being a wife, and work pulling hard. I know that I do not fall short on those duties, I just remember that I have to be healthy in order for me to do the best at my most important jobs, and so by allowing myself to be put first, this is the key to being my best self.

 

As a woman, a professional, and most importantly a mom and lifelong partner with my husband, my health and wellbeing are the key to success.

 

Health, all kinds of it—physical, emotional and mental, is essential. If we do not have health, we have nothing. I learned the hard way. I was given a second chance, so putting myself first and not feeling guilty about it is all I can do. It is not easy, even after all that I have been through. I am sure some of you think that it would be easy to put myself first. But think about it, do you do it? I don’t think most of us take the time that we need for ourselves or even understand the importance of it.

 

Ok, here is an example. When sick, like really sick, not flu sick, for so long, your days are built on getting up and trying to feel better. To feel better you will do anything that will work to help take away some of the pain or exhaustion or nausea and so you tap into your body and you try and figure it out, from the second you get up until you fall back into slumber, and then you do the same thing over and over again.

 

You all know that I started meditation during my journey. This helped me (and continues) to clear my mind, not an easy thing to do when you are looking at life differently than you always have. My talks with god became more frequent and meaningful as well. I focused on working out, not like heavy weight lifting, but 30-45 minutes (or however much I could do) daily of exercise. On top of that, I made sure that anything I put in my body was going to help, not hurt me.  All of those things coupled with cherishing every moment, massage, Reiki, and modern medicine got me to the place I am today. However, when in crisis and the body is riddled with trauma, those things are hard to commit time to because the days are filled with just trying to get to the next minute or hour.

 

So I encourage you (strongly) to start to take steps towards putting yourself first, every day, all of the time. It’s not easy but I guarantee that if you take it one day at a time, you can get there.

 

I saw this up close and in person this morning.

 

As you may know I was cleared for a bit more exercise when I was in Houston, which I am really excited about. My morning walks are wonderful, but as it heats up it gets a bit harder to beat the sunshine. That coupled with my intense itchiness when I get hot (weird but true) is a bitch. The itchiness is caused (so they say) by the extreme amount of anesthesia I had while under for over 10 hours. The doctors don’t have any idea how long it will last. So, when I woke up a bit later than normal today, I noticed the sun was high in the sky and ruled out walking my normal route. I texted my dear friend Yakeitha Fitch, otherwise known as “Key.”

 

Key has been a part of my life for the past 15 years as we developed our relationship first through her boys and then as my trainer and always as my friend. She has inspired me to stay healthy and supported me through my Cancer journey and now she is supporting me with my miraculous recovery and healing.

 

I went to Key’s studio (Key to Life) to walk the treadmill while she taught a spin class. When I arrived I heard women talking away. I walked in and they started to clap and congratulate me, hug me and let me know how happy they were to see me. I have never met these women, and don’t know their names, but they had heard of my story and were glad to see me.

 

My heart swelled up with gratitude and I felt their blessings washing over me, Key and the ladies encouraged me to grab a bike and ride with them.  For the next 40 min (that’s as long as I lasted) I peddled away, not as fast or as hard, but I was side-by-side women working their butt off for themselves. I listened to the conversations and smiled big when the music started pumping. The encouragement that came from Key and the ladies was empowering. I watched my numbers (very carefully) since this was really the first major cardio I have done since surgery, I noticed the woman next to me glancing at my numbers as well, and a song did not go by without Key, while yelling and singing, yelled “You good Mara” or “How you doing Mara?” and guess what…I was good.

 

I was OK. I sang loud and a few tears rolled down my cheeks as I reveled in being back in some sort of way. Although my pedaling was not speedy, I was pedaling towards a stronger me, pedaling towards a healthier me, pedaling for my life. And boy oh boy did it feel good!

 

I ducked out early, but not unnoticed. All of the women waved, yelled, and said see you soon.

 

See here is the trick. When a habit of taking care of yourself, really taking care of yourself begins, life shifts, like the earth under your feet.

 

I am grateful for my journey, although it was hard and life changing.

 

I am grateful for my new body, minus some major organs, with new limitations and expectations.

 

I am grateful for me, as I am and I am grateful for who I will grow into.

 

Wishing you all a wonderous day full of gratitude…look at the sky…I love to look at the sky!

 

June 14, 2019

Keith, Ale and I are back in Houston and I have to say it is a weird feeling.

It was the first time I have traveled to MD Anderson without being bald and in a wheelchair. MDA is the same wonderful place it was 2 months ago—everyone smiling and helpful and filled with people fighting for their lives.

As I ticked off my appointments on Tuesday I started looking forward to the CT scan on Wednesday night. I was nervous and excited. My CT was scheduled for 6:30 pm, so after spending our free day having a blast at the Houston Space Center, I was off to drink 60 ounces of a "delicious" cocktail mixed 2 hours prior to the scan.

We have a spot that we always sit in the waiting room, but when we arrived the room was packed. It’s always busy but Tuesday evening was really busy. We found a small couch and settled in.

Here’s the thing about waiting rooms, and elevators and hallways, I believe this is everywhere, not just MDA or hospitals, people don’t really make eye contact or talk to each other. Well if you know me you know I like to go against the crowd sometimes. So whenever I get into an elevator I say hello to everyone and sometimes crack a joke, and when getting off I tell everyone to have a great day. Passing people in a hallway or the sidewalk, I say good morning or hello, so to think that I would sit in a waiting room for hours without talking to anyone is impossible!

So the conversations began.

An older couple, I’m guessing in their late 70s sat across from us, a very burly man sat in the corner and a quiet couple in the other corner. The older woman was frail and in a wheelchair. Her face was soft and she held the huge cup of the nasty drink. She could barely lift it to her lips, and she coughed every time she took a sip. We talked about how yucky the drink was—she said that she drank so much water before she came that she didn’t know if she could drink the mixture.

Slowly we talked about the disease that had invaded our bodies. You see, she’s fighting ovarian cancer, had beat it and now it’s back in her lungs. Her spirit was strong and her smile gentle with fear right below the surface. Her husband looked worried and overwhelmed, but they both had a sense of strength. They talked about their children and grandchildren and smiles touched their faces. Unfortunately, the drink was too much for her and the wrenching started. She was so embarrassed covering her mouth. Keith and I jumped into action getting a clean blanket, an empty cup to catch the vomit and a nurse to help. We wished her luck as they wheeled her away.

The burly man sitting next to them sat quietly observing, nodding his head once in a while, so when I started a conversation with him he eagerly engaged. He was waiting for his wife who was in an MRI (those take forever by the way), his hands were working hands and soon we would learn he was a rancher, just like his daddy and his granddaddy. His wife beat cancer 8 years prior, but it had come back, now in her thyroid, bones, and liver. The doctors were trying to get her into a trial for a new drug that is having great results. He and his wife had lost a son 15 years before to the same type of cancer. There were no trials or drugs to help him. We spoke for a long time and he told me he liked what I said to the little woman in the wheelchair.

I thought about it for a second, trying to remember our conversation.

He said, ”You know, the way you live your life.”

"Ah," I said as advice to the woman and repeated, "Take one day at a time,” as advice to the woman and to “cherish each day for what it brings to you.” I repeated to the man, ”Yep...that’s good advice.”

Our conversation continued. We learned about his children and how he hired his grandchildren to rake hay at age 13 to make extra money. We listened as he reminisced about vacations he and his wife took together, and slowly the time passed. When his wife came out instead of jumping up and getting out of there, he asked her to sit down. He wrapped his arm around her and said,
“Honey, I want you to hear something from this young lady.” He nodded at me and said, “Go on...tell her...tell her how you live.”

At first, I was confused. What did he want me to say? Then I knew what he meant. So I talked about how I try to live my life one day at a time. She smiled and grasped her husband hand. She shared how she’s been depressed lately and how she just can’t shake it. Her fear was apparent and strong, but her husband's strength and determination were stronger. She said that the doctors just keep finding more and more cancer and she doesn’t know what to do. I repeated the phrase that continues to help me— you just take one day at a time, sometimes one hour or a minute at a time. They both gathered their things held tightly to each other and thanked us for the conversation, and we thanked them. Just as quickly as they had come into our lives they were gone.

During the conversation with the older couple, a mother daughter pair sat down in our cluster and chimed in. The woman fighting for her life was 90! Yes it’s not typo...90 years old. She had beaten breast cancer (70 years ago), had beaten head and neck cancer (20 years ago) and now was fighting again. I asked if she was going to do chemo and radiation if needed...she said, “Of course! I’m not done living yet!” I was touched by her stamina.

The couple in the corner remained quiet. I gathered that their nervousness was too much to engage in conversation, and that was okay.

After over 3 hours, they called my name, and off I went. The scan itself is only 10 min so I was out in no time. We drove home tired and relieved that it was over and amazed at the people we met.

The following day we met with Dr.Roland, my superhero surgeon, who told me that the scan showed things they would be watching, but no cancer at all. She approved “a little more" activity and reminded me....strongly....that this process, the healing, will take a long time. She admired how strong and good I look and said she knew it had to be hard to not be able to do much. I told her it sucked, but I will do whatever I need to do to heal.

Next was my oncologist.

He was amazed by the procedure and cleared me to get my port out if I wanted, saying that sometimes people leave them in for a while. I told him no thank you, I’ll get mine removed, please!

Next, I was off to endocrine to meet with my diabetes specialist. We talked about highs and lows and placed my new fancy glucose reader on my abdomen. She said again that with type 1 diabetes, the patient is their own doctor most of the time and encouraged me to continue writing everything down and making tweaks as needed.

As I woke up this morning getting ready for more doctors appointments, I find myself thinking of the people I have met at MDA over the past 8 months, their determination and sadness. I find myself ecstatic that I’m cancer-free, nervous that it will come back, and guilty that today when I walk through the halls, I’m not actively fighting anymore, that people I will meet still have cancer or cancer has come back or will never be done fighting till they take their last breath. What makes me so special that I beat it? Why did I get the miracle? I can think of a ton of reasons for me but it gets me thinking about the bigger picture. I may never have the answers to those questions so I will take this day and make it a great one. I will smile and spread joy and hopefulness wherever I go. I will embrace Dr. Katz who is NOT a hugger. I will say hello in the elevator, make conversation in the waiting rooms and quietly pray for everyone I meet and have met through my journey from the past and in the future.

Our lives are short, and wonderful and hard and beautiful and challenging and full of things we have no idea about. If we all could accept that and vow to do our best, what more is there.

June 8, 2019

I remember back to when our children were small, a full night’s sleep was never in the cards, but then they grow and slowly you begin to sleep more.  I remember feeling as though sleeping as changes when you become a parent.  You hear every noise or cry, barely sleeping on the edge of deep sleep just in case one of your children needs you.

 

Well, let me tell you, being a new Type 1 diabetic has brought me back to my days of light sleep, maybe more for Keith than for myself.  And just like parenting, when you think that you have it down your children change everything on you…..so is living with Type 1.  So our light sleep nights continue, with Keith getting up every few hours to search for my arm in the dark to scan the sensor implanted on the back of my left arm to scan my sugar level.  Sleep is overrated… right ?!

 

At the beginning of the week, if someone asked me how things were going, I would have said, I think I have finally figured it out…..but over the past 3 days that has flown out of the window! I have been on what they call the diabetes rollercoaster! My sugars have been shooting up and dipping way low, so that means I am left to figure it out because as I think I have said, Type 1 diabetes is also the only chronic disease where the patient is primarily the doctor.

 

Of course, I have reached out to my endocrine specialists in town and in Houston, and they gave their suggestions of what to tweak and how, but it really is up to me to figure it out.  This concept is both empowering and frustrating at the same time. It makes sense. Only I know how I feel, what I eat, my activity, so I will need to figure out the algorithm for my doses. But another part of me just wants someone…anyone…to tell me what the hell to do!!!

 

Then I remember that this is a marathon, one that I have been given the gift of running ……so I push forward.

 

That being said, I am looking forward to our upcoming trip to Houston.  Keith, Ale and I leave on the 11^th and will be in appointments and scans through the 14^th. I am feeling a bit anxious about the first scan that will be done on the 12^th and what the oncologist will say on the 13^th but I am excited to see the individuals who changed the path of my life, the nurses who cared for me, and of course to meet more of the people fighting the disease in every hallway, bathroom and waiting room. It always amazes me that all places at MDA are packed, I mean really packed. Like you have to wait for the elevator at times because there are so many people. Some individuals are visibly very sick, some petrified, others happy or at ease— all are either fighting, re-cooperating or caring for someone fighting cancer.

 

How is it that this sickness has morphed into something that you heard about some 15 years ago, to a disease that is hitting 1 of every 3 people? I think about that a lot….why??? I have a lot of theories—food, pesticides, toxins, etc.  I don’t think that we will ever know why or how, but what I do know now is that I will work towards supporting and helping those that are affected by cancer, a disease that has stolen time from my family, by hitting both my husband and me. I will continue to pray for all of the people that are walking through the days of pain, sickness, and sorrow from cancer. I will continue to spread gratitude where ever I go because today is a gift and it is all we have, so I am going to go make it a great day….you should too!

 

June 2, 2019

 

Over the past 10 months, having patience with myself has been at the top of my list of things to embrace. Mind you it is not easy. When healing from anything I imagine that we all want to feel better quickly, or just get past it. Well, when the doctors said that my healing was a long haul, I am now truly believing that it is a LONG HAUL! One that quite honestly, I am done with!

 

I am sick of feeling exhausted, tired of forcing myself to eat because I am never hungry and sick of having to give myself 6 plus injections a day. I want to be out enjoying summertime with my kids, sitting on the beach with my friends, and spending time with my husband without falling asleep on him. The constant fluctuation in my sugars, extreme stomach cramping, burning incision pain and now the dull pain in my abdomen (the doctors say “it’s healing”) is really getting old.

 

However, this is where I am right now, and I then remember how blessed I am to be here. So, I slow myself down, appreciate how far I have come, look at my family and remember that this is all relative.

 

People often say that I have been through so much, or I am a walking miracle, and I agree with them. I got the miracle that I prayed was given to a child. I made it through a major life-changing surgery and I am sitting here, typing on a computer in my home with my family sound asleep. After being told that I could not live without a pancreas...guess what…I am doing it and then tell myself….this too will pass and I will get stronger with time. So I get over my pity party and move forward, enjoy that I can now walk around the block, and even make it through a whole movie with Alessandro without falling asleep, I can get out of the house for a short time before my naps, and even get a massage (a gentle one on my side) to relieve the pain in my back.  I am determined to continue to heal and to be patient with myself because I don’t like pain and I know that if I don’t have patience then I will just be back in bed from pushing myself.

 

Pain is relative – that is what they say.  What one person would call pain, another may not notice and a third may be doubled over. WelI, I don’t have a very high pain tolerance and I truly am not that patient with myself….so both of these things are lessons for me.

 

As I move into another great day, I think of these two lessons that I have been learning and I will focus on getting better at them. When the pain gets bad I will remember that my pain is from healing. I’ll remember that others with cancer are still feeling the pain of fighting it. When I am less patient with myself, I will remember that some are not here to practice patience. And as I move forward I will never forget how grateful I am to be able to feel pain and frustration!

 

Make it a great day…only you are in charge!

 

 

May 30, 2019

From Mara's sister, Oriana:

Hi Family and Friends,

It’s time to end cancer — and this summer, Darren and I with friends are going to help make it happen.

Will you join us?

On August 10, we'll be riding for team NanaMara at Obliteride — an amazing event that links thousands of athletes and volunteers to raise critical funding for groundbreaking cancer research at Fred Hutch.

My sister Mara's strength through her cancer battle has inspired me to fight in any way I can. So Darren and I are riding 50 miles to raise money to Obliterate cancer.

We have a big goal: We are raising $1,600. And we can only get there with your help. We can do this together. We'll ride and you make a donation on my fundraising page if you are able.

Oriana's URL

http://engage.fredhutch.org/site/TR/Obliteride/Obliteride?px=1719749&pg=personal&fr_id=1680

Darren's URL

http://engage.fredhutch.org/site/TR/Obliteride/Obliteride?px=1720136&pg=personal&fr_id=1680&_ga=2.258262211.814107726.1559102120-1586938380.1559102120

You, me, and the world-changing researchers at the Hutch. Together, we’re going to cure cancer faster!

Thanks,

Oriana and Darren

 

May 25, 2019

As I sit in my backyard, watching the birds feast on a new batch of birdseed, and listening to them sing so beautifully, I am struck by all of the beauty surrounding us.  The joys of feeling the cool breeze wafting by, feeling the hot sun on my face, feeling the earth under my feet and the blessing of being here able to enjoy it all, if I think about it too much it sometimes brings me to tears.  But the one thing that strikes me daily now is my unending feeling of gratitude.

As my family and I settle into the end of the school year, the excitement of Kiara travelling internationally for the first time on her own, all of us figuring out my new life, Keith not sleeping much because he is constantly checking my sugars or making sure that I am okay, and me still accepting what my life will look like moving forward, all of it comes with pure gratitude.

One of the most amazing things that have happened over the past 9 months is that our family has felt the unending support of so many around the globe.  The support has come in many different forms and from many different people, some who we know and others that we don’t, but for some reason they reached out to support us in one way or another.  The gratitude that I feel is like a warm blanket wrapped around myself, when I am cold or scared, I lean into it and feel the love that surrounds me and my family. As my days pass and I get more comfortable with my new world I recognize my gratitude and I welcome it, because this my friends is the best way to live, with gratitude in our heart.

Thank you are words that don’t really express what all of the support means to me and my family, in fact, I doubt there are words to express the feeling at all, however, we are thankful and we feel so blessed.  The meals that continue to come have nourished my family and given us the ability to spend time together.  The cards have lifted us up every day as we read the messages, the fresh flowers that are still being delivered fill our home with beauty and smell beautiful, the donations have covered the extensive medical bills, travel expenses and now are helping with the purchase of the medications that I will depend on for the rest of my life.  So, no, thank you doesn’t seem to quite cut it ….. but those are the words that I have….Thank you.

I learned a long time ago that it is not about what kind of car you drive, the type of house you live in, or more importantly all of the things you have, but your life is measured by the people you touch, the love you give and the support you offer. Each person who has supported us has touched us in such a way that we cannot explain.

As I continue to live this wonderful life I plan on continuing to do what I have always tried to do……love unconditionally, smile at everyone I meet and support those in need, can you imagine what an impact we would all make if this is how everyone lived every day?

Thank you all for continued support. We hope that you have a safe and blessed holiday weekend filled with family and fun!

May 15, 2019

 Mara arrives home on May 8, 2019

May 11, 2019

Healing is different than fighting..this I know because this is my job right now...to heal.  I thought it would be easier to do when I got home, and trust me in some ways it is, I’m way more comfortable in my own house, I’m filled with joy from my beautiful children, I’m cherishing every moment with my husband.....but I’m also longing to do more and feel better, I’m tired of lying around while my family takes care of me.  All in all...I’ve had some tough days!

Healing is different than fighting, it takes more patience I guess, and I’m usually a very patient person, but it’s harder to be patient with ourselves.  So that got me thinking, how to continue to cultivate and grow in my love for myself if I’m not going to do it....who will?? Of course, I have so many people that love me unconditionally, but now I’m wrapping my head around making sure that I also show myself, my “new self” that same care and love.

The doctors have told me that I’ll feel “better” in 3 months and “somewhat normal in 6 months” but as I was leaving my last appointment on Tuesday before coming home, my GI nurse let me know that all of the reconstruction and rebuilding that the doctors did on the inside during surgery will take up to 18 months to heal!! 18 months!! What??  I thought I was going to cry right there....I’ve been saving my crying for my showers...so there was no way I was breaking down at my last appointment!!  So needless to say, I have a long road ahead....but I got this....because guess what??

I’m home...

With my family, home in my house, home surrounded by neighbors who all came out to blow me kisses upon my arrival, home with my dear friends, home with the sweet air and hot sun....home with the ocean. I wouldn’t want to be anywhere else. 

So I move forward and continue to be patient with myself, to be gentle and to not push it too much, because guess what, healing is different than fighting and I’m glad that is where I am right now.

May 7, 2019

Writing notes on my phone while in bed (heart icon)

Tuesday, May 7, oh how time flies!

Today I do the final post-op appointments that will lead to me being able to go home tomorrow.....fingers crossed!! The past 2 weeks have been a roller coaster of pain, joy, understanding and letting go.  My body is completely different and it will take a long time to get used to.  I think it’s going well one day only to be shot down the next with a new pain or another day of no appetite.  

I’ve given in to taking the pain pills. Although they make me loopy, my body clearly still needs them.  My walking continues, but my strength is compromised with the large incision and not a lot of calorie intake, my patient parents walk by my side (at my pace) offer an arm when I get tired and carry around a bag of snacks and drinks constantly “just in case I get hungry”. 

I remember back to the chemo days when I couldn’t eat and had no energy and then I remember how that too passed and I got stronger. I know this will be the case but everyone tells me not to expect much in the next 3 months.  

Have you ever been sick for months on end? I hope not....as I would not wish this on anyone, because it down right sucks! You all know how I don’t sit still, love to multitask and never really stop....well that is all in the past....but I am determined to get back to myself as soon as I can, however I figure I’ll smell the flowers a bit more, sit and watch and listen to the birds more, and just cherish life a bit more than before. When you are forced to give up your life to an illness you have to learn to slow down, or come to a complete stop at times.....like I always say....we have 2 choices, so I choose to continue to learn from this challenge and to get home to my family.  I choose to cherish my days, even the crappy ones and hope for everyone else to do the same.  Oh, what a life I have....and I can’t wait to continue to live it to the fullest!

Last week this time I was looking forward to an operation that would change the course of my life, and today I wake up with amazement that it happened!

Since then I haven’t really been able to fully embrace that I am cancer free....because all I’m focused on right now is healing....and let me tell you it’s no picnic! Trying to get better in a hospital is kind of an oxymoron because I had 4 surgeries in one. That means I have 4 surgeons, that comes with 4 “fellows” and 4 PA and NP’s not to mention all of the other doctors that want to come and see how I’m doing....don’t get me wrong I’m grateful...I would not be here without them....but rest is a rare commodity.

Yesterday was a tough one....my incision is showing signs of infection so that means more drugs, but my stomach (that is less 1/3) hasn’t really decided to start digesting anything yet so that means I’m feeling yucky most of the time....that on top of the figuring out my blood sugar, carb counting, insulin shots etc...well it’s a process!

But I’m waking up this morning reminding myself to take one day at a time, to make this day a great one however I can...

My sweet sister sleeps next to me in a chair (for the 4th night)she is resting and I’m so glad. My parents are in their hotel room soon to be back refreshed for another day of monitoring my care, encouraging me to walk and eat and get better. I long for my husband and kids but they will be here on Friday and hopefully, the worst of all of the pain etc will be in the past. So I wake up being grateful for today, I commit to staying in the “now” and take things as they come...because that is all I can do.

April 15, 2019

Photograph - Mara and Keith, last evening. April 15, 2019

From Mara:

"Well, the day has come to an end from the perspective of appointments. We met with the pancreas surgeon, vascular surgeon, sarcoma surgeon, gastrointestinal surgeon. I had blood taken (3 times), had a leg sonogram to make sure my veins are good to use as graft or as replacements for those that may be damaged during surgery. I had an EKG and an intensive cardiopulmonary test, this on top of the regular doctor’s appointment with my oncologist and sarcoma specialist.  I signed way too many waivers with way too many “potential outcomes due to the surgery” and all of this happened while walking side by side with tons of other cancer patients. We took time to find the Meditation room and Chapel, and when we entered we were struck by the grieving of a family that is clearly going through cancer as well.  I found myself praying for peace for all people fighting this disease. I found myself pleading with god or whoever was listening to please bless and hold the family that was so scared and upset.  I do this knowing that so many all over are praying for me, for the best outcome, for me to be healed, and for this part of my journey to be over.  All in all, it was a good day, but then again every day is a great one.

Each of the surgeons made sure that they let me know that this surgery has been a topic of discussion for many weeks, that they have all been preparing for it and that they are ready. However, one factor that will make or break the surgery is their ability to access the portal vein.  If all goes well and they can rebuild the portal vein without risking my life then they will proceed, but if they cannot, then they will close me up.  They have said that it is a 50-50 chance that they will be able to proceed, I told them that it is 50% more chance than I had a week ago…..so we move forward, hope for the best and remember that it will be what it is.

I am guessing that I won’t be writing for a few days, but who knows, this, writing and telling my story has been so therapeutic and helpful that I can’t imagine not being able to do it for a bit. But I will take one day at a time, focus on what is coming and give thanks for the moments before.  I am so looking forward to the next step whatever it may be, and I know that whatever it is I will continue to face it with gratefulness and hope.

Make it a great day my friends.

4/13/19

From Mara:

"This morning my sister Giovannina and her husband Woody are running in the Spartan race in Seattle. They have been training for the past 8 weeks and are running in my honor! Aren't they cute?"

4/13/19

Well, we have checked off step 1,2 and 3 and received the news we were hoping for yesterday.

Surgery is a go and we will move forward at 9 am on Wednesday, April 17th!

We are excited and overjoyed at the same time. While meeting with Dr. Roland she shared something that we took as quite inspiring and amazing— she indicated that the scan showed “decreased size of the tumor”, how is this possible? Well, we believe that it is the power of love, our minds, and pure prayer that has given us this unbelievable news.

Dr. Roland was very clear that the surgery is still extremely complex, and that all of the specialists have been discussing each step in detail for weeks. The two major components are the portal vein reconstruction and the pancreas. The portal vein is a large highway for blood in the body, typically it can be reconstructed by using other veins. Unfortunately, the portion of my portal vein encompassed with the tumor is too large so they will be using an artificial vein to replace mine. This means that my body has to accept the vein, which I am sure will happen. The pancreas is the other major issue. Right now from the scan, the tumor is around the tail of the pancreas, however, the head of the pancreas is behind the mass. They made it clear that I will lose either a major part of my pancreas or all of it, both leading to being insulin dependent. This will be something that I will have to embrace and learn about. Even with all of that info and all of the other major moving parts of the surgery, here is what I am carrying with me every day.

I am ready and strong and believe in my team of doctors.

I am in the best hands and have the strength of so many praying for me, thinking of us, sending strength and so much more. We are so blessed to be able to take this next, hard but life-changing step, and I know that whatever comes next will be just as it should be.

So with that, I move to step 4.

To prepare, I am surrounding myself with the love of my husband, friends that are in town, family that I am getting a surprise visit from, meditating, walking, working out with my hubby, and enjoying every minute. Because as I know more now than ever, this is what we have— the “now,” the present, this moment—so this is what I will do, I will embrace today.

I wish for all people suffering today, from anything, that they can embrace the moments that they have and enjoy today as it is because, remember, healthy or sick, this is all we have. Together we will take today and embrace it!

Wishing you all a wonderful love filled day…..make it a great one….only you are in charge!

Mara

4/10/19

Mara and her Dad

4/1/17

The 1^st of April has arrived and I am writing this while sitting outside, the air is cool and the birds are singing, soon the sun will rise high in the sky and the heat will begin to waft down making it another great day.  As I creep towards the day of our departure I find myself carrying around a few things…..first I am at peace with the next phase or step shall I call it, peace with the huge surgery, long recovery time and potential life changing results, but secondly, there is a spot in the way back of my brain that wonders ….. “do I really need the surgery??” of course I do – but here is the reality.  The past weeks I have continued to grow stronger, mentally, emotionally and physically.  I have put myself as the priority, making sure that I am listening to my body, eating good (I do cheat sometimes), taking care of my mind and soul, and because of all of those things I am getting stronger than I have been in a long time.  It is amazing that being sick can kick you into really taking care of yourself, even if it won’t change my cancer reality, it sure makes my great days even greater.

I do wish sometimes, that all of this was just a bad dream, that we will go to MD Anderson and the doctors will say that the tumor is gone and that I can go on with living a full life, and guess what these types of Radical Remissions do happen, and I believe in them, but my prayers are not for a miracle, my meditations are not for a radical remission, I have seen what Cancer does to children, families and friends and all of my prayers and meditations are for only to continue my journey with courage and strength, to continue my journey with bravery and fight, and to be able to hold my children and husband as long as I am meant to.  People tell me often that they are praying for a miracle for me, and trust me I am sooo appreciative, but I pray that the miracles are given to the children.  Last time we were at MDA we walked by the pediatric unit, it was all I could do to get past without loosing it.  I told Keith how much I loved him and that if this was to take me that I want him to live a full life, find love and raise our children with passion, but that I don’t need a miracle or even a cure if that prayer could cure some of the children that we saw.  So yes…..I am in countdown mode, I am so ready to have the tumor out of me, I am ready to crush the surgery and recovery and I am ready to move to the next phase whatever that is, but we only have today, so this moment and this day I will pray and meditate for the ones that are suffering with Cancer all over (and mind you it is WAY TO MANY) and hope that scientists and doctors have the courage and determination to continue their fight against the disease to find a cure.

I hope that everyone has the opportunity to see life as the wonder that it is filled with joy and happiness, peace and experiences, I wish this for all people, everywhere, there is no boundary on love and acceptance, and so I go with love in my heart and strength in my mind to tackle another day and make it a great one…..not just for me but for everyone that I come in contact with.

Peace,

Mara

3/25/19

Mara is visiting Joen (pictured above).

Mara writes, "Life is so precious and every day I am reminded of that! I am sitting on my dear friend Joen’s porch after having the ability to take her to get her last haircut. Then all of her Montessori graduates put together a 'porch party' in honor of her. I watched and noticed her glowing as alums circled her. It was so wonderful. Of course, as Montessorians often do, they came with delicious food and bouquets, then shared stories and songs and left only love as they cleaned up and placed flowers all over the house!"

3/3/19

"Recently, at the school I love, our community celebrated an annual tradition, Schoolwide Celebration. It is a time where the children are able to show off their lessons in many different ways over the year.

The children sing songs of peace, put on a play depicting collaborative work and love and respect for each other and our earth.  The older students showcase their projects on atoms, history, and other specific interests, and once again I was not able to attend.

Even though I was not there I could hear the children singing and see the wonderful projects, for this is the tradition that has been going on at Center for years before me and will be going on for years after I am gone.

This got me thinking.

I spoke to my dear friend and Montessori trainer a few days ago. This woman is a long time friend, whose story in my life began when I was 4 or 5 and weaves through today.

She has been there for me as I grew up, through trials and tribulations (my adolescence), through the ins and outs of figuring out what I was going to do with my life, and then as my teacher for my AMI Montessori Certification. She supported me as I navigated new relationships and as I began to develop professionally. Over the years, we have ebbed and flowed with our communication, however, no matter where she was or where I was I always knew that I could lean on her if needed. She was always just a phone call away. She always taught me to be a strong woman, to be true to myself, and first and foremost, live with love in my heart. She travels the world teaching this lesson while training Montessori teachers in so many places including South Africa, Israel, Canada.

Here is where it gets hard, almost impossible for me, gut-wrenching and painful.

My mentor, teacher and dearest friend battled breast cancer, only as she could, hard and determined. She beat it too, continued to love her husband and children and live a life full of happiness and joy.

But cancer did not give up completely. It now resides in her brain, and slowly it will take her life.

I am angry—actually really, really angry—pissed that the doctors did not figure out sooner what was going on, or that she wasn’t more proactive figuring it out when the dizzy spells began, or angry that I wasn’t there to push her into not traveling and to getting help. But none of that will change the diagnosis now, and neither it would it have changed the diagnosis then.

So I sit with my memories, and I long to make more with her.

I love that she loves my husband and children and that they have had the privilege of loving her too, and I love that I know that all of the things that she has taught me over the years are some of the greatest lessons that I have ever had, and they are lessons that I teach my children and all of the children that I work with.

As she told me yesterday, her life will end but her desire to bring our children together will not.

The foundation of her teaching to all of her students will continue on and on (as my Momma said) like ripples across the water.

I can only hope that when it is my time (when I am very old and wrinkly) that I can say the same thing. That people will remember me for how I loved and who I touched not for what I owned or money I had. I guess this is the wish of most of us. I am so glad to know that when it is her time, she knows her ripples will be rolling from every continent across the waters for generations to come, and I will be one of the people who is splashing from the middle, exclaiming all of the lessons that my dear friend has taught and will continue to teach me."

3/5/19 continued on 3/10 and finished on 3/16/19

These past months I have gotten to spend time with my husband. It blows my mind that we will celebrate 22 years of marriage  April, 26—of course, I will be in the hospital and probably not in the mood for a big celebration, but with that said it will still be a special day for us. I find it so wonderful that we still laugh and love more fiercely than the day that has just passed, but let’s be honest……marriage is not blissful all of the time!  It is amazing that waiting rooms and hospital rooms and sickness can give you the opportunity to grow closer…..these times happen throughout the duration of marriage I guess because we all know that the relationships ebb and flow.

A few summers back we decided to drive to see family in Pennsylvania instead of flying. We thought it would be a fun road trip, and it was, but what we didn’t know was that after being in the throes of raising children that it would also be a good way to reconnect and have a blast while doing it.

Today I found myself thinking of that drive. The fact that we didn’t have cell service made it even easier for us to reminisce about our life, laugh at whatever and talk nonstop…..even the kids were amazed at our nonstop talking.  Today while we were in the waiting room for a procedure, we were not as talkative but that is okay. It is just as special to be together even while sitting quietly.

All of this thinking helps me recognize how lucky I am.

I thought about the word “lucky” or “luck”  and its meaning.

Luck is brought on by chance rather than intention, but wouldn’t we all want to intentionally bring on goodness and happiness? So how is it that some people see some things as lucky and not lucky? At the beginning of my cancer journey I may have said that it was “unlucky” or that “luck had passed me by on this one,” but as I sit with the experience, and I continue to grow every day, I find myself wondering if it wasn’t just a bit lucky as well.  Of course, I would never want to have to go through the months of illness, the non-stop poking and prodding, the numerous hours of chemotherapy, the loss of hair and deterioration of my nails and other chemo effects, my mind running wild with the “what if’s” not to mention the inability to hold my children, be intimate with my husband, live my life as I remember it or just feel “normal,” but yes, despite all of this…….I am feeling a bit lucky today!

With my new “chemo-break” world, I am feeling stronger and better every day. My hair is growing in and my nails are not black anymore. I am cooking for my family. I am able to tuck my kids into bed, and I can do the laundry!

YAHOO!

These are the simple things, but I have also learned through this journey, that life is so much more than what we all perceive it to be, or maybe what I perceived it to be.  I see more clearly, think with more passion, love unconditionally and have more clarity in my purpose here on our earth. I have found meditation and other wonderful ways to take care of myself. (You know us driven women, it's not easy to take time for ourselves.) All of these things—that's why I feel so lucky. I could go on and on telling you about the constant love notes that still pour into my home, family and friends near and far who come to visit, not to mention the abundance of support from many, so yes…

I am lucky.

I am at peace.

I am stronger now than I was before this disease invaded my body and my life.

I choose to take luck into my own hands and create as much of it as I can. Maybe I will defy the actual definition.

So, as I woke up today, I remember to make it a great day. I remember it is up to me—only I am in control of seeing the good, the great in this day. I am going to channel luck and love and compassion and I am guessing that it will go far to kick my day into greatness….I hope you do the same....

Did you know that I am Irish? For real. It’s true. Really, I’m not just saying that because it’s the day before everyone in the world is Irish……so I will be dancing the Irish jig tomorrow, eating corned beef and drinking green beer…..no…not really …. not the green beer part...I will be drinking my new favorite drink….a green Kale tonic…..yummy!

Happy St.Patrick’s Day

Xoxo

Mara

Photograph credit: Cameron Triplett

March 3, 2019

As I wade into this next phase of my journey, the preparing phase (that's what I am calling it), I am aware of feeling better, but still living with Cancer inside of me and the aspects of my life that it has already claimed. I am determined not to give more up to it. I am also determined to do what I need to do to be better sooner than later.

I want to let you all know that we have gotten our surgery date.

On April 10th, Keith and I will travel to Houston to begin the countless meetings with surgeons before I go into surgery on the 17th.  They say that I will be in the hospital for 7-10 days and then I will have to stay in Houston for another 2 weeks. My oncologist here told me to just plan on being there a month. I can't imagine being away from my home or family for that long, but it is what I need to do to move closer to beating this.

So all of this got me thinking.....yes I know my presence was missed at the schoolwide Montessori week celebration, but the event went on and it was wonderful. And guess what, the message that was spread over 100 years ago by Maria Montessori continues to be told around the globe by children all over starring in their own school-wide celebrations. In their endeavors, we see a message of peace and collaborative work, a message of being strong and powerful humans with abilities to develop a love of learning, and a message of working hard and interest to produce and contribute something with love and respect—even at the age of three.

And so I thought about all of the children at Center who I have watched grow up. I thought about all of the ones I have watched graduate and move on to high school. I thought about all of the children who are working hard in college, or that are in the "real world" making a difference, and I began to realize that the foundation that was laid at Center Montessori 42 years ago continues, whether Janice or I am there, and I am grateful for that.

Because this reminds me that even though I am not there to sing and hug and help the children, they know that I am there with them. Even though I am not there to help them solve their problems, they can hear what I have taught them over the years, and even though I am not there to speak to all of you on evenings like last night, I am hopeful that during your time at Center (may it be long or short) that I have taught you something, and that you will take that something and bring it into the world, and teach someone else. I know that the children will— it is their instinct, their desire to learn and teach their peers, and all I can think of is that if we keep doing the work that we are doing, we can help our world through the children. I will continue to miss you as I continue this healing journey that will bring me back to doing what I love. I'll continue to fight because I can't wait to see what the next generation of Center (and Montessori students all over the world) do.

I thank you all for thinking of me, baking for me, praying for me, supporting me non-stop and most of all for trusting me with your children for the years you have been at Center.

I wish you all a wonderful weekend, it is gorgeous outside.....remember you are in charge of your day.....make it a great one!

Peace,
Mara

February 25, 2019

When all of the waiting comes to an end, there is peace and calm, well that is what I thought, and am hoping for so I continue to work on my ability to find peace even in the hardship of Cancer. I received a call from Kate, my lead surgeon’s right-hand woman, late last week, she had the information that I was waiting for, on April 17^th, multiple surgeons will come together to do the surgery that will remove my tumor. 

I thought I would feel relief and be excited, but for some reason the past few days I have been feeling more anxious than I have during this whole experience.  I ask myself why? What am I anxious about? Well to start, that means almost 14 weeks without chemotherapy, and what they also make clear when they tell you about surgery, is that if there is any change in the tumor when they scan me on the 11^th, that the surgery will be cancelled.  So I guess it is the worry of it not happening, having to go back to the drawing board, to not have an end in sight.  Then I stop, remind myself that they are the doctors and that I need to trust them, that I have had a ton of chemotherapy and that it is holding the tumor right where it needs to be.

A friend said to me, ”Of course you are anxious, it is a huge surgery,” and she is right.

The surgery itself will be longer than I would like to think, the doctors will be reconstructing my portal vein, removing my pancreas to detangle it from the tumor and then removing the tail of my pancreas, removing my spleen, as well as removing over half of my stomach that can’t be saved, and there will be a ton of vascular reconstruction and much more. I will need a feeding tube until I can sustain my weight, I will likely be a diabetic due to the loss of part of my pancreas, and I will have many other challenges once the surgery is over, but guess what? I will be alive and I will be able to watch my children grow up. I will grow old with the love of my life. I will be able to listen to the birds, walk on the beach, laugh with my sisters, visit my family all over the world, teach more children, work with more parents….etc etc ….. and so I focus on only positive thoughts and remind myself that my mind and body are connected, and I now am moving from worry to wonder, and from nervousness to peace and slowly the relief covers up the anxious and I feel excited with the fact that we are moving forward.

Thankfully, I am surrounded by a community of people that have nonstop supported me during this time.  I am so grateful to my dear friend who comes and meditates with me, this is all new to me so it’s more like she is teaching me the ways of the mind, and unlocking its power it has over our body.  She has taught me to sit in the moment, be aware of everything around me, and to acknowledge what our body is capable of.  My thoughts have shifted and I am focusing on strengthening my body and soul.  I remember that every day is a gift and all I have to do is live with gratefulness in my heart.

Keith and I are so grateful, for the love we have, our beautiful and brilliant children, and our amazing family and friends.  We are looking forward to the surgery date, a day when my world will change and I will be given the chance to be tumor free.  It feels a bit surreal, and glorious all at the same time.  Actually, just writing about my thoughts and fears gives me peace, and the journey continues. Thank you all for supporting me and sending me thoughts and love. It is greatly appreciated.  As I move into the next phase of beating this, I ask you to pray, hope, put it out to the universe, that all will go well for me, and that everyone suffering in my type of situation will have peace and hopefulness.

Wishing you all a wonderful day ……. And I promise that I will make my day a great one!

xoxo

Peace,

Mara

Angel waiting.

Even angels get impatient waiting. Kate, 4 years young, drew this "hopeful angel feeling a bit grumpy."

2/15/19

Waiting is never fun. I remember waiting in lines while traveling as a kid, or waiting for the mail to come from my cousin, or waiting at the dinner table while all of the adults talked about things that I did not understand, but this waiting, this waiting for life-altering information is a whole new ball game in waiting.

I guess I could say that it is nerve-wracking or painful, or even sometimes impossible. But just as I waited when I was younger, I have to do it. I have to wait. And sometimes we just have to do things we really don’t like to do.

So I think of ways to make my waiting tolerable. When my sisters and I would be waiting in lines while traveling we would play games and sing songs. When I was waiting for a letter from my cousin, I would write her a letter to help the wait. While the adults talked about things I did not understand, I would go to far away places in my head. So now I look back at how I dealt with waiting and I try to implement a way to make the wait of my life seem more tolerable.

The ease of imaging as a child is enticing. I begin to wonder if we as adults can get it back sometimes. So some mornings I lie in bed and mentally travel to all of the places I love. I either drive there (in my mind) or take a plane.

I have hiked the mountains in Cinque Terre, sat on a pontoon boat on Clear Lake, visited with family in Akron, put on a play with my cousins, worked in the garden at our farm, climbed on the rocks in Italy with my sisters , sat on the balcony in Chiavari and just relaxed with my children and husband. This type of travel is soothing especially when I really haven’t been anywhere since August, and if you know me that is a long time!  The imagination meditation (that’s what I call it) is helpful, but then I get up, check my email and phone and see if MDA has called with a date yet. Nope, not yet!

So the day progresses. I have gone from a person that always has my phone on vibrate to one who has the ringer on ….. and loud. I shift my attention off of the waiting as much as I can. I walk, meditate, cook good food, exercise and spend time with my family and friends.

Brian Berry (my wonderful doctor here) put it very simply, “Now that you are feeling better it is easier to become more anxious about waiting.” How true. If I was exhausted all day due to chemo or so sick that I couldn’t stand, would I really be worried about the wait? I doubt it. So that helped me put my wait in perspective, helped me remember to live one day at a time and to the fullest. Although I say it all of the time, it is sometimes very hard to actually do.  It takes practice because life gets in the way, and so I go back to the drawing board and look deep into myself and the present, and I try again.

I am working on embracing the wait, embracing the fact that Cancer is living inside of me and working hard on trying to love all of me, even the Cancer.  Sounds weird right? But come on – its not going anywhere for a little bit, and when I do get the date, and all is successful, I still will be living with it there in some way or other.  So here is to taking one day at a time, enjoying the days we have and completely loving who you are!

I will focus on making today a great day even though I am still waiting. I will remember that so many people don’t have the ability to wait or know that they will never get the call or the surgery date, and I will embrace my days with joyful waiting (yep—I just made that up).

Take a moment to do some imagination meditation to your favorite place – I am telling you regardless if you are waiting for anything – it is bound to make your day joyful!

Make it a great day…..I know I will!

Xoxo

Mara

"I watch this video daily and it helps me to always remember that each day is a gift, so I am grateful for this gift and this day, and for each and every one of you." - Mara

February 1, 2019

Hope is a strong feeling, one that can carry you through the toughest times of your life.  I have learned this while dealing with my……as Alessandro says…."stupid sarcoma mass."

Over the past almost 6 months I have lived each day with hope in my heart, I have felt the constant prayers from around the globe as well as next door, I have read over and over the hundreds of cards that people have sent with messages of support and love. I have been surrounded with beautiful flowers that people sent to brighten my day, I have been nourished with constant meals prepared with love and I have truly felt all of the prayers, thoughts, love, and support pouring into my being, constantly lifting me up.  So thank each and every one of you for never letting a day go by without thinking of me and our fight against this disease. 

I am amazed at the love and support of my husband, who never ever said anything but…..”we're going to beat this, we're going to be ok” even when doctors at Moffitt had written me off totally.  I can’t imagine doing this without him, our family or my parents, who left their lives to come and support our family in any way that they could and who always are there to hold me when I needed to cry.  I can’t imagine this journey without the love and support of my sisters and best friend Trish, who literally have taken care of my children when I could not, who let me scream and cry (ok and swear a lot) when I needed to and who dropped everything if I needed them.  I could go on and on with a long list of people who have changed their lives to support me, I have always heard that it takes a village to raise children……well it takes a village to get through stuff like this as well.  In some way all of this has been surreal, and I feel as though I am in the twilight zone sometimes, just waiting to wake up and for everything to be back to the way it was……but then I realize how much I have learned from this whole experience and I begin to remind myself that there is a reason for everything and that while we are going through things we may not understand, but that one day I will. 

And so my journey continued yesterday when I received a phone call from the surgeon at MD Anderson, and after consulting with all of the specialists they have decided that they will move forward with surgery!!!

They will move forward with surgery!

I cannot tell you the emotion that I felt on the phone when I heard the words "Mara, we believe that you are a good candidate for surgery." That simple sentence made the hope that I have had a reality. It is a strange thing to experience, but nothing can explain how it feels.  She was very clear that this is not the end of the battle for me, but it is a step in the right direction.  The surgery will be long and hard and will leave me with a longer life, but also one that is altered in some ways due to what they actually have to do once they are inside my body.  As we know, Leiomyosarcoma has a very high percentage of returning so that is always a chance, but with the mass removed, and our knowledge base, we will be able to detect and fight it if it is to reoccur. 

My doctor indicated that she would be calling next week to set everything up and that I can expect to return to MD Anderson after the 25^th of February.  The surgery will be long and it will have me in the hospital for 7-10 days, and then I have to stay in the Houston area for another 7-10 days.  She indicated that the next month my job is to stay healthy, eat healthily, gain weight and continue to exercise as much as I can.  So that is what I will do…..along with enjoying every day with more love and happiness than the last knowing and remembering that we are not guaranteed another day one way or another.  My days will be full of making memories with my children and spending time with family and friends, because, as we all know we are only given today.  Early in my journey, a dear friend sent me this link…..https://www.youtube.com/watch?v=3Zl9puhwiyw

I watch it daily and it helps me to always remember that each day is a gift…..so I am grateful for this gift and this day, and for each and every one of you.

Have a GREAT day ….. I know that I will !!

Xoxox

Mara

Watch this in full screen.

When Mara sent this update, I immediately thought of the Barnacle Gosling. I think Mara knows a lot about their resilience. (Susan from Team Mara Love).

January 29, 2019

Mara's message:

Funny how some of the sayings that we have heard over time stick with us, and how some come back and make us remember those who said them. I have thought of those sayings over the past few days, and therefore bringing me back to those who have said them to me …..in some sense, I feel them sending me strength during a tough time …..

Patience is a virtue.

Time flies when you are having fun.

Don’t sweat the small stuff.

Good things come to those who wait.

Keith and I traveled to Houston for a round of new scans and tests as well as to meet with a surgeon and my oncologist.  We were scheduled to be at the hospital at 2:00 pm on the 23^rd, after a very early morning flight, power nap in the room and tasty breakfast we made our way to the hospital.

Due to the fact that I was having scans I was not to eat anything after noon, the appointments started and for the next 8 hours I was accessed (when they put a port needle in with a tube so everyone giving tests can use it), had my blood drawn and then the following tests: a full body CT, MRIs on my liver and on my lung. Both the CT and MRI were given with contrast, which was pumped in through my port. The CT also required that I down a very tasty drink (I'm joking, it was not tasty at all!). It was after10:00 pm when all of my scans finished. For Keith that meant a lot of waiting around for me….and I am guessing also worrying that I was okay—

Patience is a virtue!

Everything went fine and I asked the lady at the desk as we were leaving at almost 11 pm, “How long do you stay open?” Her response was, “Cancer doesn’t stop and so neither do we. We are open 24 hours.”

This struck me….she was right….cancer doesn’t stop fighting and so neither can we!

Keith and I left amazed that the doctors we would meeting with early the next morning would even have the results of all of the scans that went deep into the night. It was a long day, more for Keith than for me because—

Time flies when you are having fun!

The next day we arrived anxious and excited to meet with the surgeon. If you remember, earlier in my journey I was told that I was not a candidate for surgery due to the location of the tumor and the metastasis in the liver and the lung. We were going to find out two things from this appointment: Are the spots really metastasizes? Had the tumor shrunk at all to make me a candidate for surgery?

The surgeon Dr. Roland (a young spunky woman) flew into the room with a big smile on her face. She introduced herself and then got right down to business. Good news first – she and my oncologist declared that the spots on my liver and lung were NOT metastasis…yahoo …. However, my tumor did not shrink and the mass still encompassed my whole abdomen. The tumor is wrapped around the tail of the pancreas, is compressing the lungs and stomach, has attached itself to the spleen, and for the kicker is wrapped around the portal vein. And lots of other small veins are compromised.

None of this sounded good, but we were aware of most of it.  All of that being said she continued to talk, stating that the tumor is stabilized and at MDA stabilized disease is good. And, they try to do everything to be able to remove it. Our ears perked up and hope began to rise.

Dr. Roland then told us that she would be meeting with a vascular specialist as well as a pancreatic specialist to see if they could remove the tumor.

Of course, we were happy. She was very clear that she was not saying yes to surgery, but that she was not saying no—

Don’t sweat the small stuff popped into my head.

Revel in the positive news regarding no metastasis and the renewed possibility of surgery,  and don’t worry about the other.

After meeting with the surgeon we waited to see my oncologist. When we finally met with him he encouraged us to do the surgery if it was an option. This brought us to our next question: what if it is not an option?

My oncologist told us that the CT exam revealed a blood clot in my neck. He did say that it was common, but of course, it still brought worry to the table. He placed me on a blood thinner medicine that I will administer daily by giving myself a shot in my stomach. He indicated that my body needed a rest from chemo and that if surgery is not an option that I am to return in 60 days for scans and to start a new regimen of chemotherapy. So we wait, but then I heard the saying —

Good things come to those who wait.

While waiting I am determined to make every day a great day.

I am determined to stay in the present, take time to watch my children do the things that they do, take time to sit outside and listen to the birds, take time to soak up the love of my family and friends. But most of all, just take time to live my life to the fullest.

Because here is the reality—

Sick or healthy none of us are guaranteed another day. That realization becomes more “real” when sick, however, no one really knows if tomorrow will come.

So here’s to having great days, loving unconditionally, and having fun no matter what!

Xoxox

Mara

January 7, 2019

It’s Monday, the 7^th of January and it is the day that our son was born in Guatemala City. We were not able to be there for Alessandro’s birth, in fact, we did not even know that he was born on this day until we received a picture of our son, 4 days later.  I remember clearly that day…the picture came to us early in the morning with a description of Alessandro’s health, which included his vitals and very little biological background. As soon as Keith and I looked at him we knew he was our son. It is so amazing that the past 12 years I have watched him grow and thrive have gone so quickly.  He has the kindest heart, always a helpful hand and loves his family fiercely. And, he loves cows! Yep, he’s an animal lover of course, as well as a musician, video gamer and soccer enthusiast. How are we parents so lucky to have these tiny humans come our way, either by birth or adoption?  Either way love for a child is earth-shattering, all-encompassing, and nothing can make it falter.  

On November 19^th, Keith and I were there for the birth of Kiara Rose, our first child and I remember thinking that I could never love another child as much as I love her. Seventeen years later I am feeling the same way about both of my children. Kiara is the truest young lady I know, the hardest worker you will ever come across, loyal in her love for her family and always true to herself. She has strong opinions and I am forever awed by her connection to a bigger picture of our world. We could not be more proud of either of our children.

So all of this love got me thinking about our (Keith and my) parents...and how much they love us and our children. 

This waterfall effect of love has come to us through generations of loving individuals, all of them paving the love path for us…..and so maybe this is how we can love so fiercely and unconditionally.

Kiara had her wisdom teeth pulled last week, all 4, no fun by the way. Over the past 4 days I have watched her deal with the pain, not be able to eat, feeling cooped up because she won’t leave the house with her face so swollen, etc. and all I could feel is a strong desire to make it go away, do anything to make her feel better. Of course, I couldn’t do much other than rub her back, chill her ice packs, and make her smoothies--and that has been hard, harder than hard. It has downright sucked!

That brought me back to thinking about our parents, Keith’s journey with cancer, his 9 knee surgeries, my journey with cancer, my infertility battles, the regular run of the mill childhood illnesses. My momma tells me, quite often, that she wishes she could “take it from me.” She wishes she could take away the hurt, the exhaustion, the roller coaster of reality that Cancer is for me and our family. I always tell her that I would never want her to be able to take it or to ever have to go through anything like it. As I watch my children grow, watch them struggle with pain or other things I too wish I could “take it away” or make it better. At times like that, I have to remember my life, my parents' lives, my ancestors lives, and believe that if we did not have all of our struggles, would we be the humans that we are today?  I don’t know. I do know that Cancer has shifted me, and I am guessing it will continue to do so. That being said, I will always want to take pain away from my children, give them a better life and more opportunities, support them as they travel through their childhood into adolescence and then into adulthood knowing that one day if they choose to have a family that they will carry with them the love that Keith and I surrounded them with. The long line of unconditional love will continue.

So if you are reading this you are part of our love line....people who have unconditionally loved us for our lives, or as long as you have been part of our lives…for that we are grateful.  Happy Monday…..may you make it a great day!

xoxox

December 31, 2018. Mara ringing the bell to start the "MAKE IT A GREAT DAY 5K" race.

The race was organized by her dear friend, Trish Hackworth.

Janice Mattina and Kara Bettle

A New Year Message from Miss Mara

Good Morning my friends!

As I woke up this morning I was hit with the reality that we are almost to the end of 2018! WOW! Up until now, I have been looking forward to the end of the year, which I categorized as a not-so-hot one—my father in law passed away, I was diagnosed with cancer and a dear friend died in his sleep. These are the things that make it a great year to end, to finish, and put behind me.

But as I woke up this morning I realized that although those things did happen, they were just pieces in a long year of wonderful events and times and that there was so much more to 2018 than just those three life rocking things. Keith and I got to travel with our children, we celebrated my parents 50th wedding anniversary, I met so many new and wonderful people, Keith took a new job close to home so he doesn’t have to travel as much anymore, we watched our children grow and thrive, I grew closer to some of my dearest friends, I supported families in their journey with their children...the list goes on and on. So as we come to the end of another year I choose to focus on the wonderful things that crossed my path over the year. 

Yes, I admit, it is not easy with such hard things that happened as well, but I know I have a choice every day. I have a choice to harp on the negative or bask in the glory of the positive. I have a choice to be afraid and angry or face fear and live with hope and courage.

So I choose the positive, the hopeful, and the courageous.  

I hope that the end of this glorious year brings you tons of memories of all of the wonderful things that have happened this year, and some of the sad ones too. I am looking forward to 2019 and new adventures with my family, new advances in my cancer journey, new growth with the school, and more. I am determined to make it a great year though I am sure it will have some ups and downs. I am grateful that I get to welcome it with open arms and cherish every day I have in it. 

Thank you all for making 2018 wonderful, your friendship, and your support. It means the world to me.

I hope your day is wonderful, and that you ring in the New Year with excitement and joy!

Make it a great day!

Love you all dearly!

Mara

December 18, 2018

Photo: Mara having a great day at school a year ago welcoming children. August 2017.

December 16, 2018

Dear Friends,

I am home sweet home and so happy to be here with my children and family, even though it is rainy and dreary as I write this.

The trip to MD Anderson (MDA) was good, yet not as fruitful as I had hoped. But I am working on letting my expectations of this disease go. That is not easy because I have many thoughts about how I would like it to go.

The Doctor at MDA is really positive and clearly very versed in leiomyosarcoma (LMS). He is on board with the current treatment I’m receiving meant to shrink the tumor. I had a scan at MDA the morning before flying home on Friday. The results will hopefully be read Monday and after that, the Doctor will determine if we continue with the current chemo or move to something else. At this moment, I am tentatively on hold to fly back to Houston for a follow-up appointment.

All in all, the Doctor was very clear that I am in for a marathon, not a sprint since he does not see me as a surgical candidate. (I say yet!)

This whole life-changing event has really rocked our world. Keith and I spent a lot of time crying and trying to figure out how we move forward. Thankfully we are both really strong and stubborn and I don't plan on letting this rule our life, but then I wake up in the middle of the night and this medical challenge is all I can think of. I am grateful to the really good doctors that are doing everything possible to help me. We are aware that this LMS challenge is not going away anytime soon, and that there is no cure right now—but with time we are hopeful that they will find a cure.

I don’t know what else to say. I am scared, really angry and oh so sad about having to live with this. I will rally and fight and do all I can to live as long as I possibly can. I am so grateful for your non-stop love. I am awed and amazed at the constant outpouring of support from around the globe. So, thank you. Thank you for all of your notes, comments, and donations. I wish I had the words to tell you what this means to us.

xox Mara

November 28, 2018

When I wake up in the morning I begin to talk to myself.

(This is what happens when you are aware that you are living with cancer inside of you, or at least that is what is happening to me, maybe it happened before, I can't remember. Perhaps it’s chemo brain.)

First, I start with the positive thoughts, "I am strong, I can beat this, today is going to be a great day," but little by little the “what ifs” and fear seeps in like water through a crack in the bottom of a rowboat.

This morning was no different, however I got stuck on “today is going to be a great day.”  I tend to say this a lot – and really, I truly believe it. I am crazy blessed with a family who loves me unconditionally, a home, a job, everything I need (and mostly want) and although I have all of these things, this morning I laid there wondering when I started to tell myself that “every day is a great day”

I think back to when I was a child. I didn’t have to tell myself the day was good. Life was just good, happy, and full of exploration and experiences. As I grew into an adolescent, I didn’t always remember the good of everyday. Because experiences of the world shifted as I grew up.

At least it did for me. Not that I wasn’t having great days, but often, the days were full of stress, social issues, academic issues, which of course led to family and other daily life issues. Don’t get me wrong, even as an adolescent I remember people telling me that I was so “positive and upbeat.” I just don’t remember telling myself that it was going to be a great day. So I wonder when I began telling myself this mantra type of statement that really has shaped my outlook and my life.

I have had tough times, tough relationships, and tough losses throughout my life. I wonder if it was during those tough times that I made a subconscious decision to have “great days.” Who knows?  And now that I am deeply thinking about when I began this daily declaration, it no longer matters. I have lost my curiosity and worry about when it happened! I am only focused on making sure that I not only say that I am going to have a great day this day, but that I actually live it in one sense or another. 

Here is how my day was great yesterday.

• It was chemo day (not so great you think) but I got up and took a walk by the water with my mother, and with her we soaked up the beauty that surrounds us.
• And, I soaked up my mom’s unfaltering love, a love she has for all of her family.
• Then I spoke with Kara who was at work at school. She has literally shifted her whole life to help me heal.
• After that I ate a great lunch and went to chemo (I call it the spa). Here’s what you have to know about chemo on Mondays—it’s busy and crazy and usually filled with new patients who are scared, nervous, and confused. I was one of them months ago. The spa was no different yesterday, so after I was hooked up and my infusion was running at full speed, I reached out to a new patient and told her what helps me—breathing and taking one day at a time. I told her what I do, if she can to find something every day that makes it a great day for her, to try.  She seemed relieved, a little less nervous. I shared my phone number and told her that this is not easy, but she has got this! Her cousin was with her and he had lots of questions, so I answered the ones I could and told him to talk to the nurse for the others.
• After chemo Keith, the kids and I had an early dinner. Then Keith tucked me into bed and kissed me good night. I went straight to sleep.

So I guess you could say that yesterday was a great day. At least in my world it was. I didn’t go out and buy anything fancy. I didn’t meet any of my life long goals (although those are changing). I spent time with my family. I took care of myself, and then I took care of someone else. This made the day great for me.

I woke up this morning and started another day, one that I am determined to make great. Although I am missing all of you and know that you are missing me I hope that you are having great days. Let me tell you, every day is so very important!

xox

Mara