Rapping about Body Image

Michael and I recently shared another fun (but honest) rap…….

https://youtu.be/Sx49lRHDe88

We might not be “gansta” but we are certainly real. Flaws, scars, successes, failures, ups and downs………

We feel so passionate about our podcast, and we love this blog and our BMT merch, but we truly have a blast making music and videos together. Music is a way of expression, a way to find joy, to ease pain, to feel emotion, to cope…… singing and dancing is like a straight pathway to love. And communication. And maybe, while healing ourselves through music, we have found a different way to share with you…. Making the hard lessons a little easier to swallow….. like this one. Body image might sound pretty trivial when you are fighting for your life, but it’s still a pretty big deal in our world. Especially for a 21 year old. We have seen Michael go from muscular athlete, to rail thin after chemo and transplant, to gaining so much weight on steroids that his face was almost unrecognizable, then just a few months ago to seriously sick and skin-and-bones on IV nutrition, but now, finally, recovering. Miraculously. At last, he is able to work on building strength again, to feel better, to be healthy, to heal body, mind and soul. Working out to look good has been replaced by working out to feel good. We talked about body image on our Michael & Mom Talk Cancer podcast recently, and maybe the most important message is that through every single physical change, Michael is still Michael. Even if his body and face changed, his heart has remained my beautiful kid. Funny, smart, cute, goofy, inspirational and motivational, (with a little torturing of his sister on the side!). He’s even willing to rap and make a goofy video with his mom. Not many 21 year boys would have the courage to do that, I think. As I say in my bars: The people that we love the most their looks are secondary, Your attitude, your spirit is what makes you legendary. Working out like every day we changed our motivation, getting healthy getting stronger bein’ an inspiration. Wanna feel good not look good sounds lame but it’s so true, Gotta love yourself as much as Michael and mom we love you.

We do love you……

Michael and Mom Talk Cancer: Episode 14, Surviving and accepting, even if we cannot understand the why

Summary

In this episode, Michael and his mom talk about surviving, while 2 young adult patients, friends, bonded by cancer and treatment, passed away.  They talk about how hard it is to understand the reason, the why, but find peace in moving forward.  Acceptance is the lesson of the moment.  They have discovered there is no winning or losing, just finding purpose and meaning in every day.  Even staying positive is no guarantee of surviving…. Join Michael and his mom Ashlee as they talk through new realizations and heart breaking lessons.  

Transcription

July 2022 lessons, 2 years after diagnosis, from ashlee

It is July 14th, 2022, the middle of the summer, and finally, this summer, so many people are traveling again, going on vacations, flying, driving, boating, experiencing!  Covid is still there, lingering, but life is finally more than zoom and facetime, online activities, and being confined to home. Families and friends are gathering, going to the movies, hugging, holding each other close again. But for Michael, and this mom, the Covid restrictions are still part of our life.  Well, not only “covid restrictions”, more like immunosuppression restrictions.  We are still wearing masks and keeping a little distance from strangers. We are avoiding crowds. Not a lot of group socializing, although we broke that rule to see Jennifer dance last month in an actual theater.  We sat in the back, trying to avoid too much contact, but wow, it felt good (and also very STRANGE!) to be in the presence of so many people again!  Of course, watching her dance was the real magic.  The real therapy.  And I could not resist giving hugs to some of the lovely humans that I have not seen in the flesh in so very long.  Benefit vs. risk.  I am pretty sure the oxytocin in a hug must outweigh the odds of getting sick.  Since then, we have shared more lovely moments with a handful of friends.  It has been nourishment for the soul. Human touch.  There is nothing that can replace the energy of being in the presence of people you love. We have experienced that love and connection at the hospital, of course!  But it has been special to have it at home, once again. We are still tethered to Miami, but I can think of far worse places to be confined.  Sometimes I have twinges of envy, when I see posts on instagram and Facebook of friends or family in distant lands, living life through new, exciting experiences and adventures.  But these are momentary lapses, short lived weaknesses. Because being home, seeing Michael smile, bonding with my daughter over morning coffee, waking up to the sound of birds, instead of the sound beeping IVs, taking walks outside in the evening and driving to the beach to watch the sunset change the color of the sky, those moments are better than any vacation or trip that I could imagine. Ever. A few months ago it did not seem possible to spend 3 months at home. I was not sure Michael would ever be home, honestly.  Now it has been 3 months. 3 months in a row. 3 months without getting admitted to the hospital. Treatment is still part of our daily lives. I have alarms in my phone that go off at intervals to remind me not to delay treatments, medications, PT, and appointments for Michael.  We either go to UM or Nicklaus 2-3 times a week.  But that is a miracle.  A blessing, a wonder, a shock.

Even with all we have learned the last 2 years, somehow, since we have been home, the lessons keep coming.  In the hospital, on the oncology floor, you are surrounded by other cancer and BMT patients.  Other survivors.  Other kids getting chemo or infusions, dealing with disease and sickness, side effects and sleepless nights. Families enduring similar pains, emotionally and physically. You know you are not alone going through it.  Walking in the hallway of the 6th tower, you see them, and it makes you appreciate that there is a whole group of humans in this tiny circumference who you can relate to, who speak the same language.  An unspoken bond for life.  Even if you don’t know their names.  But you do know their names. Because it is like that.  You are an unrelated family. Here at home, we are surrounded by “normal” people.  When we go outside, the kids we see don’t have IV poles attached to them.  They eat whatever food they want and don’t seem to worry about throwing up or getting sick.  They run and jump. Their bodies look so strong.  OK, I know they are not all super athletes, but after living in the hospital, our neighbors sure do look healthy!  We have to remind ourselves on a daily basis, not to compare.  It is an old lesson, one of the first we had to learn, but it is also one that needs daily affirmation. Compare yourself to yourself.  Not to others. Remember where you have been and how far you have come. It is harder when you are home and your friends stop by with their glowing suntans, bulging muscles, stories of parties, decisions about jobs or classes for next semester.  Or they can’t stop by, because they are at the beach, or traveling to windsurf or surf, or they take on internships and summer classes in other countries.  They are truly kind and sweet and they do care, but they don’t, they can’t, understand what you have been through. What you are still going through. It is not their fault they did not get the membership to this club. They look at you and think you must be all better because you are home.  Right?  But then I remind Michael, and myself, that we would never change the education and experiences we have been living these past 2 years.  It has given us so much perspective, so much appreciation for life.  We have been given so much purpose. We have been granted the desire to make the world better. So, we urge ourselves, do not compare yourself to others.  We have to repeat it a lot, do not compare. 

Another lesson, you can’t be enlightened 24/7.  This is hard for me.  I look back on everything we have been through and survived, I am so full of gratitude and love for every second of life!  My perspective, my outlook, my entire being has been affected.  I hope I have evolved and grown. But I still get annoyed by bills and I get grumpy when the AC breaks.  I still see my wrinkles and aging body and worry about how I look.  I still get impatient when we sit in traffic driving to the hospital.  I know it is silly.  And I remind myself, we are here!  We woke up breathing this morning. We are living at home. Michael is ALIVE!  But I am not illuminated all the time.  I have to forgive myself for that. Pockets of peace. Pockets of happiness. Pockets of enlightenment.  We have been given the gift of so much insight, but we are still human.

And maybe the hardest lesson of the last month has been seeing two patients we know, boys we bonded with, 20 year olds who had similar circumstances to Michael, survivors who were his age, pass away in the 6th tower.  In the rooms where we had been living not so long ago.  It is hard to understand why they did not make it.  There is not a reason that seems fair. There is not a justification that makes sense in my limited human capacity.  It becomes yet another lesson in this crash course we have been taking since Michael was diagnosed. I have said it absently so many times: “things happen for a reason”. I do believe that.  I do believe that there is a purpose and meaning to life.  But that does not mean I understand the why.  When Michael was diagnosed, we made a silent pact NOT to ask why.  Not to question. Just to try to move forward, get through it, make it mean something.  But knowing that 2 young men in our very tiny circle at Nicklaus took their last breath just as Michael came home, just as he was finally beginning to heal, you wonder.  Survivor’s guilt is real.  You cannot help it. I know Michael feels it. Why? Being a mother and thinking about those other two moms, my heart breaks into a million pieces and I hold Michael tighter, but I want to hold those boys, too.  I wish I could tell their moms it will be ok, but it is not ok. It is not fair. Michael did not do something better or more deserving. And in the same token, none of them, including Michael, deserved to go through any of this agony. So, this just comes back to life is not fair.  And all we can do is take our bitter lemons and try to make lemonade, even though Michael can’t handle lemonade…. So we leave the lemons there on the counter and don’t try to change them into something else.  It is painful and bitter and unfair, but we can accept it.  The lesson of today, acceptance. Then we don’t struggle quite so much. Acceptance doesn’t mean we think everything is perfect or just, but it means we can continue life and do our best to do our best.  

As always, I have written too much and overstepped, but I cannot end without the beautiful, positive truth….. Today, 2 years after Michael was diagnosed with cancer, we feel blessed and loved and inspired.  We feel gratitude. We feel a lot of peace, even though not 24/7.  We feel alive. We are writing our story, we want to share and inspire and maybe give ourselves a “why”.  And to make the world a little bit better.  Just a tiny bit.   Because you have all made my life so much better, more beautiful, more MORE. 

I love you…..

ashlee

Broken hearted…. from ashlee

We just found out that a boy we know, a 20 year old survivor, warrior, man/child, friend, BMT brother, passed away.  Cancer.  More like complications from cancer.  People die every day.  Every minute.  Every second. But it hurts us when it is someone we know.  Or someone we have a connection with.  This 20 year old was not the friend who had been to our house, although we had talked about it. We had not hung out together at a club or the beach. We didn’t text or facetime every day.  But he was part of us.  Part of our life since Michael’s diagnosis.  Which makes him part of our hearts and souls forever. He was one of the first patients we ever met.  It was August 25th, 2020 and Michael had been diagnosed with hepatosplenic t-cell lymphoma just 3 weeks earlier. He had started chemotherapy, and we knew he needed a bone marrow transplant. The details were still murky. This particular day he was having yet another bone marrow biopsy to see if the chemo and steroids were doing the job, slowing down his aggressive cancer, stopping it for long enough so the doctors could move forward with his transplant.  We were in the minor procedures suite, Michael slipping into a hospital gown while we waited to see the anesthesiologist who would be putting him under.  We were separated from 3 or 4 other patients by animal print curtains. We were surrounded by smiling elephants and lions and hippos and cats.  Pediatric hospitals were definitely colorful. It was not very private, you could hear the other caregivers trying to distract their children from what was coming.  A baby was crying.  A dad was talking on his phone making some sort of business deal.  We could hear cartoons from an iPad.  Really loud cartoons. But by this point, privacy was a thing of the past. Our curtain was wide open, we could see the nurses station and people coming and going. There was a kind of commotion as an older teenage boy was wheeled in with his mom.  He was greeted with cheers and congratulations and high fives (well, it was covid, so high “elbows”).  Eyes were lit up all through the minor procedures suite like Christmas and you could feel everyone beaming with smiles from behind their masks. This duo seemed like a big deal around here. The mom had a good, happy energy.  She caught our bewildered stares and told us proudly that her son had just celebrated his “Day 100”.  He had made it to 100 days post bone marrow transplant.  It was huge, a day to ring bells, to applaud, to party!  He was cancer-free. It was still so new to us, we looked at them in awe. His mom felt our silent invitation to hear more. She squeezed in next to me and started telling us eagerly about her incredible son. He was a fighter. And a champion. This 18 year old (a year younger than Michael) had already kicked cancer’s butt once. He was first diagnosed when he was only 12 or 13, I can’t remember. This was his second battle.  He was winning again, though. This time had been more complicated, he had needed a bone marrow transplant, not just chemo.  But here he was, passing his day 100, and thriving. It had been rough for him post transplant, he had almost died, been in the PICU (pediatric intensive care unit), insane fevers, GVHD, all the complications. I must have looked terrified, because she touched my hand and told me not to worry, Michael would not get all those complications.  I almost believed her.  I did believe her.  Michael was coming into this with no history of sickness or disease, no cancer in his past.  His BMT should be a breeze.  In just those few moments of conversation we became family.  A different kind of family.  I felt a closeness to them.  We loved Michael’s oncologist and the oncology nurses, they were caring and brilliant and knew so much about the journey ahead, however they were not the ones going through this. Not really. But this mother and son shared a bond with us that NO ONE IN OUR LIVES, NO ONE WE HAD EVER MET, shared.  Cancer and a BMT.  They understood.  They had been there. They knew our hopes and fears.  Our faith and our doubts. The physical agony and the mental struggles. They knew even more.  And so that day, they became our heroes. That meeting gave us a goal, get to transplant, yes, but get to Day 100 and you will have “made it”.  They were on their way out of treatment, we were on our way in, but that day, when our paths crossed, became a red letter day.  

After that it was months before we saw the teenager and his mom again, but they stayed with us, part of the goal, make it to Day 100, ring a bell, get cheers, celebrate the victories!  The next time we met was a few weeks after Michael was discharged post transplant.  We were in infusion and the teen’s mom saw us through the window of their room.  She rushed out to see us and hear the latest updates.  We were like besties. I shared how Michael was just starting to get some of the GVHD complications that almost took his life.  It was rough. The heroic teenage boy also had been experiencing a few setbacks, but they were both strong and fighting and I believed it when I said nothing could stop them.  We compared notes, laughed at the similarities of the two warriors, exchanged numbers, the boys followed each other on instagram, I got some mama advice, we vowed to stay in touch, and hopefully, in a few months, when the boys were less immunocompromised, we would get together and relax outside of the hospital. 

It never happened.  

Michael and I would see them off and on in infusion, for the next year, and we did stay in touch.  We would text, DM, sometimes share tears, sometimes share successes, and occasionally we would see each other in the hospital long enough to hug and have a conversation. But Michael was going through so many difficult complications of his own, so many hospital admissions, near death moments.  Michael passed his Day 100 with no celebrations, he was too sick with TMA and GVHD to ring a bell.  And then the sad day when we learned the other boy’s cancer somehow came back. Again.  We were devastated for them. We tried to keep sending them prayers and love and as much motivation and inspiration as we could, but how could we cure his cancer?  We were barely surviving ourselves. The boy went back in for another transplant, a more experimental one, car t-cell.  They couldn’t do it at Nicklaus, he had to go to a different hospital, Jackson at University of Miami. Michael had also been doing treatments there, so again, we compared notes, talked about the similarities, the common ground, and felt bonded.  The mom and I texted, trying to lift each other’s spirits, as both her son and Michael seemed to hit a wall, in early 2022. We did not know if either of them would make it.  It was so painful and exhausting emotionally, mentally, physically.  But then, miraculously, May of 2022, we found ourselves sharing the same room, in infusion, at Nicklaus Children’s Hospital, and both boys smiled. They were thin, fragile, and had a new sort of look in their eyes, the look of too much experience for their age, perhaps.  They had been through far too much. But they were ALIVE. They looked at each other with what I felt was common admiration.  They had made it.  

That was the last time we saw each other.  A few weeks later, Michael got the message from another BMT friend, the boy had died.  And we were in shock.  And devastated.  And numb.  And shaken. And crushed. 

We pray for the family.  We cannot imagine.  We had been so bonded, but now?  We will not see them in the hospital anymore.  We will not share similar complications or medications or advice on side effects, or how to park at UM without paying a fortune. They are part of us forever…..  They knew and understood more than anyone.  But how can we understand this?  

We can’t.  And our common bond, the bond that tied us together, was broken.  Like our hearts. 

June, 2022, the gifts and challenges of being home, from ashlee

As most of you know, we are home.  Home with all that home could possibly mean.  But as I said a few weeks ago, home is not a place, home is not a house or a building or even a city or state. Home is a state of mind and a state of being.  So yes, in April we left the safety of Nicklaus Children’s Hospital, located my dusty car, and cautiously drove home.  We traded the hospital room for the 3 bedroom house where our kitty cat, our furniture, all of our necessary (and unnecessary) stuff live.  Where I could cook meals once again and we could open the front door, check the mail, touch the grass, see the sky, step outside without asking a nurse if it was ok.  Where we could feel the comfort of sleeping in our own beds, but also sensed a lingering fear of getting too comfortable.  Too relaxed. After all, since July of 2020, we have had a small suitcase of hospital-stay-essentials packed and ready to throw in the car.  Now it has been almost 2 months since we have needed that suitcase.  We continue to go to the hospital for infusions, blood tests, follow ups, scans, physical therapy, but we have not spent the night in the 6th tower in over 7 weeks.  It is wonderful and terrifying.  But mostly it is a step forward towards healing and I think a new kind of independence.  I think of myself as pretty self-sufficient. I am a 53 year old widow.  I have had a career, been a wife, raised 3 children, had my own business, written music, been on television, on the radio, on tour.  Yet still, coming home made me realize how dependent we had become. I had become. Obviously, I have leaned on all of you. A lot. So much more than I could have ever imagined. I put my ego aside and have trusted your support to get through this storm. I am grateful every waking moment for that love.  Yet the hospital, the entire system, from doctors to nurses to employees, had been our daily foothold not only for support, but survival.  Our life jacket to keep us afloat. Our parachute as we fall. That 6th tower room was our safe space and our reality.  Michael’s existence was intertwined with these extended hospital stays. We longed to be home, but how could we leave when Michael’s life was still in the balance?  He was broken and being held together by IV’s, infusions, doctors, pills. Until something changed. And little by little, the broken pieces were being put back together, held by some greater force than medicine could explain, leaving strong but beautiful scars.  He could take his medications on his own.  He could walk.  He could get out of bed.  His “Michael smile” returned.  He was talking to visitors and looking them in the eyes, as if life meant something again. And his liver somehow rebooted and started to function once more.  We could envision doing this at home.  Without IVs. Without daily scans. But just like all the other steps for the last (almost) 2 years, they do not go in a straight line.  We have had goals.  Some of them we have reached, some we had to let go of, trying not to feel ashamed.  In the span of one week, between May 15th and May 22nd, we moved from our 3 bedroom house to a 2 bedroom apartment, celebrated Michael’s 21st birthday, watched on live stream as my oldest son Steven graduated, and booked one way tickets to Vancouver for Jennifer’s next chapter to becoming a dancer, the Arts Umbrella Professional Training Program.  The move was tough.  But isn’t EVERY move tough? Especially when you downsize by a LOT.  Michael’s birthday, maybe not exactly the 21st birthday most imagine.  The festivity included Jennifer, Kitty, me, Michael and a lot of cardboard boxes still waiting to be unpacked.  He had a few small gifts to open and a homemade vegan, sugar-free cake.  No going to a bar to get drinks to celebrate his first year as a “legal” adult. No hitting the club to hang with friends without a fake ID. But…… alive.  A month  before, I was not sure he WOULD see 21.  This is not an exaggeration. So, cake with his sister and mom, maybe that was enough. Steven’s graduation was a bigger checkmate, maybe.  We had a goal when we left the hospital in April: to drive to St. Petersburg and see Steven graduate in person, in cap and gown, walking across the stage to be handed his diploma with the highest of high honors.  I had missed so much the last 2 years, I could not miss this.  But I did. Michael spent that first month at home throwing up almost daily.  Unable to hold down much of anything.  How could he make the 8 hour drive there and back?  Or how could I leave him behind?  So, I sat in front of my computer at 8am, in my pajamas, with my cup of coffee, grateful that someone at Eckerd had decided it was worth it to live stream this momentous event.  I was crying when they announced Steven’s name.  Laughing when I saw he was barefoot under his gown.  His girlfriend sent me videos and photos.  The best video, Steven jumping into the water after the ceremony, still in cap and gown, with his roommates, now friends for life. Steven’s only demand to me for the day, stay with Michael, keep my brother safe and out of the hospital. He was such an adult already.  And Jennifer, well, her leaving home to pursue her dream still feels unreal.  Is this my baby?  Who never put on shoes, but always wore a princess dress? Who preferred her brother’s bathing suits to bikinis, rode a scooter before she could walk, then fell in love with dance just like her mama and her grandma before that?  I feel like I missed out on her last year at home, we spent more nights in the hospital than in our house.  But that is life. Our time was interrupted, but the time we spent together, spend together, is so much more precious. So deep. So filled with emotion and life. Maybe that means more.  She is beauty, in every sense of the word. Now, as I look over at Michael reading a book on the couch, I wonder what is next. The world does not stop moving or pause just because you are sick, or down and out, or spend months and months in the hospital. We are still on a kind of pause. No, that is not right.  That would mean stagnation and every day we go to great efforts to do good, to move forward, to get better, if not physically, then mentally.  So, no, not a pause, but maybe a kind of sheltered existence. We are once again part of the outside world, but not really.  Still finding our way. Still finding strength. Still finding our footing. The vomiting is getting better with a new medication.  But again, another pill. Another thing to take with side effects and consequences.  Always checking to be sure the good outweighs the bad.  Like that decision to stop prednisone 2 months ago. So far, the other dozen or so pills he takes each day seem to be working. Sun sensitive, immunocompromised, hair is thin, skin is thin, food is a challenge.  BUT, we are still home.  2 months later….. I am still a caregiver 24/7, but we smile more.  We try to live for the moment, but we talk about the future. We think of ways to promote helping others going through similar, or not-so-similar, situations.  We want to write a book, to speak, to share, to spread anything and everything we have learned.  We want to give back to all who have given so freely to us.  To you, reading this. We know there is a purpose. If this happened without giving life more meaning, then what is the point?  The tough thing is that we are home and everyone expects all to be good. It is over.  Battle won, mission accomplished. Michael has been healed and now we can go back to normal.  But we can never go back. We are too changed.  And the recovery is long. Sometimes it feels like the world did stop 2 years ago.  Or at the very least, that we are in a time warp. But Michael is not the 19 year old surfer who was diagnosed. Steven graduated college. Jennifer is off to foreign lands.  And I try to relish the moments we do have together. It is not the overflowing plate from the all-you-can-eat-buffet, but the small, rich morsel of nourishment, each bite to be savored.  I remember very clearly the day I learned that someone becomes a “cancer survivor” the moment they are diagnosed.  Each day of life after diagnosis IS survival. What I did not learn until now is that surviving has so many new challenges.  It is so long….. But, it brings so many new gifts into our lives.  I think we will focus on those gifts, while we keep facing those challenges head on.  We owe our strength to you. We love you….

Michael and Mom Talk Cancer: Episode 13, a candid conversation about body image and loving yourself!

Summary

In this episode, Michael and his mom have a relaxed conversation, uncut and unedited, on the topic of body image. Michael’s body has been through so much in the last 2 years, so many changes, from a 165lb athletic surfer to 130lb post transplant recipient, to 170 pounds of bloating and weight gain from prednisone to treat his Graft Versus Host Disease, and now to 120 pounds, trying to recover from near fatal liver failure.  Michael has been left with scars over his body, outside and inside, but as his mom points out, he is still the same Michael, no matter how he has looked.  The scars only make him better.  More Michael.  More lovable.  He has used working out, not to necessarily improve how he looks, but how he feels.  Join Michael and his mom Ashlee as they talk about this relevant topic from perhaps a different perspective.  LOVE yourself, is the greatest message yet.

Transcription

Michael and Mom Talk Cancer: Episode 12, Rewiring Your Brain

Summary

In this episode, Michael and his mom talk about how coming home takes a little “rewiring of the brain”.  After months in the hospital, coming home is not as easy as they thought it would be.  A chance meeting with a random stranger on the beach, led to a deep conversation about the patience needed to change from an invalid to a young man recovering at home.  Flipping the switch is not immediate, and not simple.  Patience, balance, two of the words that seem to come up over and over again.  Join Michael and his mom Ashlee as they talk through another challenging, but hopefully relatable situation.

Transcription

We are home. And all that means…. from ashlee

The last few weeks have been like yet another new beginning.  I know that sounds cliche.  The words are commonplace, perhaps, but the events feel so much bigger.  After 5 months of fundamentally living in the hospital, at long last, 3 weeks ago, we came home.  It seems like coming home should be returning to the comfortable.  Easier.  After all, when we say “home”, it does not mean a place, because places change.  Cozy cottages are exchanged for bigger ones and sometimes roomy houses are given up for more affordable apartments. No, home is not where you live, but instead it is a state of mind. A state of heart. A state of soul.  Home is the familiar. Home is safe. And the phrase “coming home” is like rays of sun shining through the clouds. Hopeful.  Warm. Comforting. Family.  I write these words because that is how I view home… how I viewed home.  But this homecoming was different.  It was not like coming home after the multiple 5-day chemo admissions.  Not like coming home after the 7-day “he’s-got-a-fever” admissions.  Different from the home coming after the 6-week Bone Marrow Transplant admission.  Different from all the other times we spent days and nights in the 6th tower and returned home.  This time coming home was foreign.  Almost alien.  And very intimidating.  We had been through so much. We were too changed. I think part of it was the amount of time we had spent in the hospital.  We used to say that the outpatient, infusion unit at Nicklaus was our home away from home. Then, last year the 6th tower became our 2nd home.  We said this fondly and with so much love!  The doctors, nurses, residents, employees, the humans that work at Nicklaus are family. We have spent more time with them than many families spend together. But even so, at the end of the day (or at the end of a shift) they leave their jobs, the jobs that they love, and they go home to their own people. They go to their safe, comfortable place where they do not clock in or out.  Whatever that is for them.  And we would stay another day, another shift.  And during those days and weeks and months, Michael went through so many evolutions.  He scared most of the doctors and residents into thinking he might not make it. More than once.  I denied it, but sometimes, very, very, very late at night, when no one was looking, when I was wide awake, NOT from a nurse taking vitals on my son, my pillow would suddenly be very wet with my own hot tears of fear.  The fears I did not want to share with my family, the hospital staff, my children, especially Michael.  The fears that could manifest into something I did not want on my shoulders.  In those months Michael went through new medications, old medications, higher doses of past medications, costly infusions, tubes inserted into his gallbladder, liver, abdomen. Surgery. He had PT to help him walk, IV fluids to keep him hydrated, NG tubes to help him eat, drugs to help him sleep. We were, he was, dependent on the 6th tower for survival. It was a complicated 5 months, full of our forward and back “cha-cha” steps. Lots of backwards steps. And at one point, the backwards was too far.  Too far for Michael.  For the first time in this cancer/bmt/gvhd journey, he could not quite get his footing.  And he lost hope. It was so dark and my singing, dancing, holding, hugging, talking, silence, love, love, and limitless mother love could not bring light to his eyes. But then we had a kind of revelation.  And made decisions about that overused expression: Quality of Life.  And Michael found hope again.  And that is what coming home has been.  Hope for life. Not coming home because he is healed, although he is so much better.  But coming home to FIND home. To figure out how we can be at home, how we can have a life with quality, after everything this 20 year old man/child has been through, has experienced, has had nightmares about, has survived.  Home to heal and find hope.  We still have to balance on that tightrope every day to make it through the most simple tasks, things most of us take for granted.  Things like walking. Sleeping. Eating. Relaxing. The eating part has certainly been difficult.  Food is tied to everything!  Not only pleasure, because food is social and food is comfort. But for energy, for survival, you need to eat.  To heal, you need to eat. To sleep better, to recover, to rebuild muscle, to focus, to calm, it goes on and on, food and nutrition are key. I was raised in a family with quite a famous health expert as the matriarch.  So we understand nutrition and we do our best. But GI is complex and eating has not been the fun family event we remember from days gone by. We try not to think too much about my 6’1 son weighing 118 lbs. The doctors are happy he is not still losing weight.  We joked when we were discharged from Nicklaus that it was the hospital food making him so skinny.  Hmmmm.  I think I take that back.  Part of our “quality-of-life-pact” was to eat more of what he loves…. So far, his stomach is not on board.  Too many of the foods he loves (and yes, they are healthy choices!) are not loved by his digestive system. But we know, we are told over and over, it will take time. Oh right, patience.  The favorite word of every cancer/bmt patient (said none of them ever!).  But yes, we are exercising patience, going with what he can handle, packing in the nutrients where we can. Wanting to break some rules, wanting to ENJOY food, but well, not quite yet.  Another big piece to our pursuit of quality of life has been returning to the beach.  For my surfer kid, getting his toes in the sand, his hair blowing in the ocean breeze, his body wet in the salt water, hearing the waves crash, watching the clouds change color as the sun sets, these were, and are, part of life and living.  We thought we would go home and say f*#k it!  Let’s go jump in the ocean!  But it is not that simple, either.  His legs and knees are so fragile from past steroids, from AVN, from being in bed, from losing so much weight, that just walking from the car to the beach is an all-consuming effort. Trudging through the sand is a full on work out. Avoiding the peak of the UV rays from the sun, which can still cause a flare up of skin GVHD, we go in the early evening. And little by little, day by day, we have made it closer and closer to where the sand and ocean collide, and finally, even as far as getting our knees splashed at the seashore. Full body immersion, not quite yet.  As Michael gets stronger, he will have the force to stand in the moving tide and shifting sand, and soon, I know he will swim in the salty water.  But it is a slow process.  Not what we expected.  And then there is the simple anxiety of all he has been through kind of hitting him now. Realizing all that he has survived.  All that he has suffered.  It is like when you go, go, go, go for so long, then as soon as you stop and relax, you get a cold, or catch the flu.  Your body waited until you let your guard down, then it caught you and infected you!  It’s similar to the mental process.  He has been so strong for so long. When it was fight or flight, he fought. But now that he is at peace, trying to heal, to recover, his mind is processing the last, almost 2 years, of non-stop, unrelenting, battle to survive. And that is a lot to grasp. For me. For the family. For Michael. But we are home. Challenging, beautiful, difficult, enlightening.  Making us want to be better and making us want not only to survive, but to inspire. To evolve.  To be here for a reason.  Even with everything that has happened since his cancer diagnosis, we are still grateful.  Still alive.  Still able to smile, to dance, to rap! So now we aspire to be here for a purpose. Thank you for being our purpose.  For not abandoning us when it was so dark.  We see a little light right now and we share it with you. Those rays of sunshine coming through the clouds.like home. Comfort. Family.  Life.  We love you and are forever grateful.

April…. from ashlee….

The last month has been intense and Michael has gone through tough moments. The toughest. I feel like I should backtrack a bit…… you know his story. Diagnosis. Chemo. Radiation. Transplant. Immunosuppression. A lot of rules. Limited foods he could eat, limited contact with friends, no going out, just hospital and home. No beach. No sun. No ocean. The places that we had always

gone to heal, to feel alive, to feel whole. The rules were there for good reason. They were there to protect him and keep him safe. And we followed them to a T, so Michael COULD get back to health, ASAP.  We felt if we were obedient, little by little, he would get his life back. Obviously, he would never be the same person he was before, he had been too changed to go back without evolution, but still, move forward to a life he could recognize and that could bring him joy. Post transplant, GI GVHD brought even more limitations to his diet, more rules. And the start of our love/hate relationship with steroids. Next was TMA, more drugs, more immunosuppression. April, 2021, the first liver biopsy and the onslaught of liver GVHD. More steroids. 10 months post diagnosis and we were still spending at least 3-4 days a week in the hospital. His 20th birthday, May 19, 2021, slowly improving, finally weaning off steroids. We made our first “STRONG” shirts, did a TikTok together, decided to put our story out there, hopefully to help and inspire others. Still no beach, no sun, no going out, all the restrictions from months before remaining in place, yet even as faithful we were to all the do’s and mostly don’ts, it was a summer of too many surprise hospital admissions, stomach issues, and full force, life threatening, liver GVHD. Steroids were the answer again. By August he was in a wheelchair from the Avascular Necrosis in his legs, a side effect from, you guessed it, steroids. His doctors agreed “no more!” of this medication that seemed to be a deal with the devil. It was a group decision. His liver was not responding to prednisone, it was torture, and he was weaned one final time. But his liver was still critical. There had to be another way. He started ECP (extracorporeal photopheresis at UM) and an additional immunosuppressant, hopeful this combination would be a gentler answer. We were spending 4-5 days a week in the hospital between UM and Nicklaus. Michael took a college course online, some “normalcy”, but he simply had no energy to keep it up. ECP was too much, too draining, physically, emotionally, mentally. This is when we started the podcast. A project we had been talking about. We had a lot to share, a lot to say, and we both felt compelled to help others. It made all this suffering somehow justified, if we could use it for the greater good. We had been blessed with so much support, we wanted to give some back. By October of 2021 we were exhausted from the constant back and forth to the 2 hospitals, but Michael had gone over 2 months without being admitted overnight. A record. His liver enzymes were slowly coming down. His eyes and skin were not as yellow. It was a tough schedule, but it seemed to be working. We were feeling cautiously optimistic. Until……November 3rd and Michael was admitted to Nicklaus Children’s Hospital with a bad cold. Next came the string of complications that kept us admitted to Nicklaus for the past 5 months. Gallbladder drain, surgery, more liver biopsies, and finally, relapse of even more severe liver GVHD. In desperation, he was put back on the cursed steroids. The side effects from the steroids this time were more extreme, but his liver was failing. Turns out, most of the doctors did not think he would make it. Neither did Michael.  And this is when his spirit kind of gave up, or more accurately, he just wanted peace. No more fighting. No more struggling. He wanted to go in the ocean and hug a friend. He wanted to be off the drugs, off the medications. Every. Single. Medication. Has. Side. Effects. You make a choice each time you swallow a pill that might help, but also alter something else in your body. You weigh benefits vs cost. Balance, right? Not always balanced, though. We did finally go home, after almost 4 months in the hospital, but the quality of life still looked bleak and I felt Michael was so heavy. I could not lift him up, no matter how hard I tried. I had never seen him without hope in the 21 months since diagnosis. He was always able to stand up after every knock out.  But, this time was different. He did not want to pull himself up again, only to be pushed down. He was readmitted to the hospital after only a few days home, he felt so crappy, physically AND mentally.  None of the treatments were healing his tired liver. Steroids were killing his soul. We pleaded with his doctors. Michael was not going to make it, regardless of his liver, if he could not get off this drug. And they agreed. At first he seemed numb. But gradually, as the steroids left his system, his eyes began to clear and the beautiful Michael smile, ever so slowly, returned….. Because there was a miracle in the works. A brand new, hot off the presses GVHD medication. A simple pill. One pill a day. Michael had heard about it months earlier, but in order to get approved you had to have failed multiple lines of treatment.  At this point, on the verge of needing a liver transplant, Michael finally qualified. We went through hoops and a specialty pharmacy. The medication was delivered to my house, and my daughter Jennifer brought the last hope, packaged in a nondescript white bottle, to the hospital. The same hospital where we have been (and still are). Within days of starting, his liver enzymes showed signs of improving and his bilirubin started going down. Was this a revelation? Or a joke?  Not a joke. He has been taking Rezurock for just over a month now, and his liver, yes, it is damaged. Yes, it has much healing ahead, but it is functioning. It is coming back to life. Like Michael. We are still in the hospital, but hoping to go home soon.  As usual, another complication did arise (Michael and his cha cha!). He started looking like he was in his 3rd trimester of pregnancy, including swollen ankles, back pain, nausea. His liver was having another little hurrah, ascites. Build up of fluids, mostly in the belly. And so, one more procedure, as they surgically placed a tube into his lower abdomen to evacuate the liters of fluids that his liver can’t handle (yet!). But every day his labs improve. Every day his smile broadens just a little. And so we are standing. I jokingly named his IV pole SASS when he was at the peak of the pregnant belly: “Swollen and Still Standing”. I changed it to “Skinny and Still Standing”, once those fluids started leaving his body.  Now that first “S” stands for “Strong”.  But I am adding one, “SMILING and Still Standing”. Michael said it best the other day as we were walking laps around the hallway of the 6th tower oncology floor: “mom, my body just won’t give up”. Long ago we stopped questioning the “why” and we try to let go of the “it’s not fair”. Because we do not know why and it is obviously not fair, but then again, the blessings, the love, the GOOD we have experienced, maybe it does balance out in the end.  All these words to say, it has been another month of our chacha. This time it was the slowed down, acoustic, taking-our-time-stepping-forward version. Taking our time getting up.  We hope the drain comes out soon, so we can go back to my daughter, to our kitty, to life outside of the hospital. (AND to find a new home to rent! Sigh) We plan to add a little quality of life, maybe break a few rules for the greater good. Eat something crazy. Put our toes in the sand. Walk in the sunshine. I love you. We love you. We ARE still standing, somehow….. I believe with all my heart thanks to you and the love that encompasses us every single day.  Sending it ALL back to you……

Michael and Mom Talk Cancer: Episode 11: Giving up, but coming back

Summary

In this episode, Michael and his mom talk about how Michael hit an all time low emotionally…. he was ready to give up and stop his Post BMT treatment. Yet, somehow at his lowest point he found that human contact, sharing his vulnerability, and turning to his doctors for his mental health, which is as important, if not more so than physical health, helped him find the strength to accept where he was, and then to move forward again.   This episode is special, as Michael reveals what he felt was his weakness, but has become his strength, vulnerability. Join Michael and his mom Ashlee as they talk through another challenging, but hopefully relatable situation.

Transcription