Author Archives: michaelandmomtalkcancer

February, 2023

To my unwavering family that I simply appreciate more and more and more and more (and more……), as time passes and our journey continues,

February is the month of love. It is impossible to avoid the hearts everywhere we go, in stores, in the hospital, even the filters on our social media. Call me naive, yet I just can’t believe that this is a ”bad” thing or something to criticize society or Hallmark for creating. Maybe it IS true, it is a commercial holiday, manufactured to make money. But by now you all know me and I just can’t be cynical, I love LOVE. So, does it really matter, as long as we are reminded to spread that 4 letter word, l-o-v-e? I think sometimes you must be so tired of my eternal lessons, from balance to our cha cha, to acceptance, beauty in pain, body image and perspective, and my last update, reminding us all to be grateful. No matter what. Even when it seems like why? Why should we be grateful for cancer? But we are. Because of the love. And somehow, in some way, every update always circles back to love.

This week I went to a celebration. A colorful, music-filled, humorous, tragic, beautiful party for India Rose Carolina. Some of you were there. India took her last breath in her 5 year old body on January 18, 2023. Anyone who knows this family, cannot help but to feel sad, devastated, cheated that we will not see India’s smile and feel her energy, or in our case, overhear her making loud noises in the 6T (the 6th tower oncology/hematology floor at Nicklaus) room next to ours, wondering if she was laughing, dancing, shouting, or being stubborn, “pulling an India”, as her mama calls it. But we also cannot help but to feel so grateful, blessed, honored to have experienced the passion, life, laughter, and LOVE that she exuded. The whole family exudes. In 5 years she LIVED so much. And her family loved so deeply. Our brains are a bit linear. We want more time, but maybe time is actually deep and wide, not such a straight line. India did not live so many chronological-measured-in-a-direct-kind-of-way days or years, but she lived so deeply. So widely. Such a huge lesson to the 54 year old writing this.  One more reason to say f*#k cancer for taking yet another innocent life, but still, I appreciate with my whole heart and soul the savvy club that we now belong to. The deep and wide club. 

For me and for Michael, the 21 year old kiddo who is my greatest teacher, the deep and wide way of living and loving has become a mantra for us. Not that we achieve it 24/7. But we do get there as often as we can. We try. The past month has been focused even more on giving back to others, knowing it is the best way to lift ourselves. Another one of our mantras. It’s on my refrigerator: “The best way to help yourself, help others”.  In a recent podcast we interviewed Matt Ode, an extraordinary cancer survivor, an energetic beautiful soul, a man spending his life with a mission of serving, especially the cancer community. He has a really cool acronym that he shared with us. No, it is not one of those medical acronyms that make you feel ignorant or that you need a degree to understand like GVHD, AVN, CBC, NPO, TPN, TMA, ECP, etc…. Matt’s favorite acronym: H.O.P.E. Help. One. Person. Every day. It’s a good one. We stand by this, too, feet planted firmly. Well, sometimes we sit with it. Or lie in the hospital bed at Sylvester or Nicklaus. But our chins are up and we believe in hope. Because 31 months after diagnosis, 28 months post bone marrow transplant, Michael is still alive, granted, still in treatment. Mostly ECP, his blood treatment (I know, another acronym, extracorporeal photopheresis). Still living with immunosuppression and medications, with the avascular necrosis, gastroparesis, and chronic GVHD. The orthopedic surgeon ordered another set of MRI’s on both of Michael’s knees next week. From there we see if surgery might be an option. He is so young for knee replacement surgery. It is usually an option reserved for older patients because knee replacements have a short life span, only 15 years or so, not ideal for a typical 21 year old. But Michael is anything but typical. If it can offer a better quality of life, even short term, we are all in. Deeply and widely in. Physical therapy was on hold for a while, Michael had hit a wall and PT did not seem to be helping, according to his therapists. But the orthopedic doctor wants to challenge those thin (I did NOT say skinny!) legs of his, even with the painful necrotic knees and elbows. He needs to build a little more muscle before any surgeries, so Michael will be returning to PT at UM twice a week in March. It is time consuming but it is worth another shot. He has follow ups with the pulmonologist coming up in March, as well. Another pulmonary function test. Keeping an eye on his lungs and also keeping the other eye on the gastroparesis and his off and on appetite. His weight is stable, not gaining weight, much to his chagrin, but at least he is not losing. His mama thinks he looks like the member of a cool rock band, with his skinny jeans that tend to fall off at the hips. His skin is covered in patches and scars, but the more he shares his story, the more he connects with cancer survivors and anyone needing a little inspiration, the more vulnerable he is, which means the braver he is, that discolored skin transforms and becomes like badges of courage and honor. Like some kind of stylish model setting a new trend. And have you seen his hair???? Next week we see the GVHD specialist, too. That one always makes us lose a little sleep the night before. Scratch that, the week before. Michael’s latest labs have shown a slight liver flare up, but we try not to think too much, not worry, keep going and keep our hope. And while we keep going we DO as much H.O.P.E. as possible. The helping one person every day. At least one. Hopefully more.

Our support groups and our podcast seem to be touching lives, so we have become even more committed. We have spoken out to pharmaceutical companies recently for Rare Disease Day, sharing our experiences with the two rare diseases Michael has faced: Hepatosplenic T-cell Lymphoma and Chronic Graft Versus Host Disease. The more vocal we are, the more open and honest, the more vulnerable, the more vocal, open, honest and vulnerable we want to be. It is a good kind of cycle and we are in full blast. Although Michael is still immunosuppressed, we are taking steps to speak publicly, in person, there is nothing like that human energy!  And we BOTH love to talk! Have you noticed? We will be on the Rachael Ray show on March 2nd. They decided to air the segment with us again, I think they liked this inspiring story 🙂

As always, I spoke more about my soul searches than actual health updates. Michael is already a miracle, and now, we try to take the magic and spread it out as far and wide, or maybe deep and wide, as possible…… 

Thank you for being there for me, for us, for each other. I have said it so many times, but I believe it more and more, people are good. YOU reading this, you are not only good, you are angels.

I love you

To my beautiful, beautiful, dear friends,

I think that every update tends to have a kind of thread or theme. Not really on purpose, but it just kind of happens, depending on what we are going through. Since Christmas, our recurring theme seems to be gratitude. Gratitude and love. Both have always been there, but I feel these words resonate in my heart so much lately. And I hear these words out loud in Michael’s vocabulary more and more. Maybe because we are doing more interviews. More podcasts. Talking to more people. Tiktoking and youtubing more. Really trying to connect emotionally and verbally, even if in-person is not always an option. As a mama, a parent, an educator, I have tried to spread love and teach appreciation and perspective, but life is a much better teacher. Way better. Especially a life that has been through so much, that is so fragile and vulnerable, but all that vulnerability resulting in so much strength and power. And love. Always love.

Last month we were given the hard news that Michael’s avascular necrosis has deteriorated his bones even more. We can thank those life-saving, life-changing steroids. In February we will meet with the orthopedic surgeon and look for some future options. Hopefully, not-so-distant-future-options.  It has been hard for this athletic kid, who did his best to exercise his body throughout chemo, radiation, transplant, surgeries, hospitalizations, and more. I have videos of him in a wheelchair lifting 3 pound weights. That is Michael. So the AVN makes this piece of the healing puzzle a bit more complicated. He can no longer lift weights, no longer bike, but we walk. We hit the beach in the evening when the sun is setting, to keep his skin safe from the rays that will aggravate his skin GVHD, and bad knees and all, we plow through the sand, trying to get his heart rate up. Work his lungs, his leg muscles, his heart, his soul. My soul, too. We are so incredibly grateful that we live close to the beach. Grateful that we live in Miami. Grateful that he CAN walk. Only 8 months ago just getting his feet into the sand was a challenge. So right now, those evening strolls are the best for him, physically and mentally. Swimming in the pool is going to be added to the routine, on the days when his port has healed enough after having been accessed for ECP. Every once in a while, we squeeze in another form of healing, submerging into the ocean. Vitamin Sea. The best therapy, although the bacteria keeps us out most of the time. But quality of life must win sometimes too. And we need the ocean for our souls. And if you know me, you know we continue to dance. On the daily. Whatever that entails. It is not always pretty, but it sure is the best endorphin release ever.

Last week we met the oncology/GVHD pulmonologist at Sylvester who quietly surprised us with her kind, lovely manner. She was a positively bright human who took time, listened to his lungs, but listened to his words, as well. She asked the right questions, and gave so much hope for options, if Michael’s lung restriction were to worsen. As of now, his lungs are restricted, but no labels. We know after so much cancer treatment, after all he has been through, his lungs, just like all the other organs, have been a bit beat up. A bit hammered. Abused through no fault of their own. Chemotherapy is not the targeted treatment we wish it could be and that we have hopes it will become. Neither are steroids. Again, the balance of survival vs. side effects. Survival has won and survival has become “living”. Not only “living”, but having purpose and meaning every day. We are grateful to share this message of hope and love. Pain, yes. Body pains and emotional pains. But beauty, hope, love, gratitude, too. 

So January has been a month to concentrate on Michael’s continued GVHD treatments, look for new solutions for the avascular necrosis and gastroparesis, and the biggest focus has been on touching the lives of other cancer survivors, families, caregivers. We are constantly busy, constantly occupied, as we are either in the hospital for treatments and doctor appointments, or holding out our hands to others who need some understanding. Often we are doing both at the same time. We started sharing this story and our “lessons” so organically and it seems to be driving us to a brand new purpose. We have embraced our new roles as guides for others going through similar cancer journeys, similar struggles, or simply life. Because cancer has taught us so much about life. Not just facing a disease, not just navigating oncology struggles, but how to live. We were so blessed to be guests on the Rachael Ray Show in early January and it was inspiring to see the impact of one 21 year old kid and his mom. Because of course, the truth is, it has never been just about us, it has always been about you and how you have been there for us without fail. Without exception. Whatever we have been going through. Sharing our experience has been like sharing a love story. Sometimes heart-breaking, sometimes humorous, sometimes dramatic, always real, always relevant. 

Thank you and we love you. I love you. As long as you are there, I will keep sending you these messages, because you and our connection with you, are the reason we are still here and why we can continue to rise up and do good in this world. Our goal.

Love and so many magical hugs,

ashlee

December 25th, 2022

Once again, to my dear, most beautiful humans ever, who continue to astound and amaze me with unwavering love and generosity, 

I thought about writing a “pre” Christmas message, to share holiday wishes with you all, but at the last moment I got cold feet, and not because of the drop in temperature here in Miami. Not because I was too busy or forgot about you. (How could I ever forget you, my angels here on earth?) But because even at my ripe, wise old age of almost 54, I still worry about “jinxing” future events. And I really did not want to mess up this holiday at home. With great relief, I can now confirm that we made it through Christmas with no ER visits, no anxious emails, no texts at midnight or panicky phone calls at 2am to concerned doctors. We cooked (notice, I said “cooked”, not necessarily “ate”) our traditional Christmas Eve dinner, with my 3 very grown up children, my lovely mama, her charming boyfriend, and of course, kitty, watching over it all, making sure no one left her sight. I think as we get older, family time becomes more special, more valuable, more precious. But in particular for this little family of 4, who have not been at home together for a holiday in 3 years, wrapping gifts, shaking mystery presents under the tree, sipping tea, comparing recent favorite movies, cooking, laughing with each other, sitting and being quiet together, Christmas was far more than special or valuable or precious. It was a kind of miracle. That word again. Overused but right on. Thanksgiving was the rehearsal. December 24th was the real deal. There was no audience, the cast was oh so small, but each character was vital. And we made it through. Not without a hitch, of course. We had to have a few setbacks, just to keep us humble. To keep us on point with our chacha. Reminding us not to drop the ball or get too comfortable. A few days before Christmas we spoke with Michael’s physical therapist at UM. He made the unexpected recommendation for Michael to take a break from PT. This sounds pretty good. Like a success. More time at home. But the reason is not quite that victorious. PT has hit a wall. It’s just not helping anymore. Michael’s AVN is getting worse, his bones seem to be deteriorating more, even though the offending steroids are no longer in his system. Working out, Michael’s go-to, not only to be as physically fit as possible given his difficult circumstances, but also for his mental health these last 2.5 years, has become too painful. We still try to go on walks, we still attempt some sort of exercise together on a daily basis, but it is not the same physical challenge this kid craves. Needs. Loves. Maybe this is the push for knee surgery. Future elbow surgeries. So, on the bright side, my Vortex-Port-Avenger kid may have to become the Bionic man far sooner than we had thought possible. The day after this surprising blow from PT, we met with the BMT/GVHD specialist at Sylvester. Mchael’s liver has improved, his skin is not even a tad bit yellow, the whites of his eyes are actually white, and although I hate to repeat the same cliche over and again, it is a bit of a phenomenon. Even his conservative, cautious doctor used my overused term, miraculous. But, and yes, there must be a “but”, just like with the PT, the improvement has stagnated. There seems to be a bit of a plateau. Of course, there is plenty of permanent liver cirrhosis. The skin and mouth GVHD just won’t quite let up. ECP is keeping it under control perhaps, but chronic GVHD is long term. We knew that, what we did not know, according to his doctor last week, “7” seems to be the favorite magic number. As in: “give or take 7 years for the GVHD to really improve”. Probably at least seven years for Michael’s body to come to terms with new marrow. Wow. Barring other complications, that is. But we don’t talk about those complications.  We know they exist. We know the risks. We know and he lives with all the side effects not only of cancer and his transplant, but of his treatments. We know about relapse. We do not need to will these things into existence. Today, Michael is still in his infant stage of GVHD. There is a long road ahead. It is not straight. It is curvy and hilly. He will see a pulmonologist at the end of January. He has lung restriction, nothing crazy, but we want to keep it that way. He has also been having night sweats and headaches, just like when he was first diagnosed in 2020, so a PET scan is scheduled for January 6th. I do not, can not, believe the cancer is back, yet every scan, each biopsy, all close examinations, make us hold our breath. Close our eyes. Pray. They are the clouds on the horizon that the meteorologist cannot predict. We hope it will blow over. So we wait. Trying not to tap our feet, but to continue to live in the moment. Or turn the tapping into a dance. Or a song. Or a podcast. Mostly trying to continue to LIVE. To remind ourselves of the lessons we know so well, like mindfulness. Acceptance. Everything is temporary. Love unconditionally and love a lot. If you do not go for it now, when? Take a risk. A lot of risks. Michael is soon to be starting an online college course to move him one step closer towards his goal of becoming an oncology nurse. I am figuring out next steps in my ever changing and evolving career (totally open to suggestions!), wishing to continue to live my purpose of making the world a little better, hopefully through this journey as a caregiver. Michael and I both feel we are so changed and have so much to share…… yet still so fragile? Vulnerable? Still restricted by immunosuppression and hospital schedules. But moving forward…..

So we try to keep our hearts and minds open to whatever may be next. Hoping it is not another storm, but maybe a refreshing sunshower.

Love. Always love…… it seems to make the magic and miracles happen…. And as always, more than ever, I love you so much. And you all make me want to be better…. To do better.

Sending the most magical wishes for the holidays and the year to come… YOU are the real gifts.

Love

ashlee

At the risk of repeating myself, I still feel the need to share this little update….. there are common themes from the latest blog post, but maybe a few different details about my Michael’s health…. the ALWAYS common thread, the gratitude for you all, reading this…. 

My dear beautiful, kind, never-can-I-express-my-love-to-you-enough friends and family,

The last month seems to have been as full as the last 2 and a half years. Once in a while the roller coaster slows down and we open our eyes, start to shift in our seats, ready to unbuckle the seat belt and step off, take a break, but then it takes off again! It is not quite the same breakneck speed as last year and the year before at this time, but still so many ups and downs and unexpected turns. I know that is life. Of course. I just seem to feel each and every change in direction so much more than pre-Michael-having-cancer life. I know that “feeling” is good. I believe that with all my heart. Better to “feel” than to be numb, even if that means feeling pain, because our pain continues to be accompanied by beauty.

We have talked so much about balance in the past, strived for balance, reached for it, made it our goal, but this last month we are perhaps finally coming to terms with it. Actually, no, not really balance. Maybe the study of how opposing forces must exist in this life, on this planet. This dimension. I am and have always been an optimist. I think some part of my being thought this would save me from the dark side. I could keep bad things away with my positive attitude and if I stayed cheerful enough, keeping the light in my heart, I would manifest only the best in my life and live on that higher plane of existence. I admit it, I am a romantic. A sucker for  “and they all lived happily ever after”. But this idea brought to the forefront of my mind the question, why have these seemingly really sh#tty things happened to hopeful, positive, enthusiastic me? To innocent Michael? To some of our dearest friends who are absolutely angels on earth?  The passing of two more of these beautiful souls in the last weeks? No answers as to why, but there is a belief, now, more than ever, that the opposing force is real. You cannot have one without the other. Every time we celebrate, we mourn something, or someone, else. Every time we mourn, we seem to find a reason to celebrate. I don’t want to risk boring you, repeating myself over and over, but the truly tragic events always bring up questions and not very many answers. We just do not know. So not only balance, but also acceptance is our common theme now.  And, at least for us, for Michael and this mom, there is always beauty in pain. 

The beauty today, Michael and I are home. On Thanksgiving. It is the first holiday that Michael has not been admitted to the hospital in 3 years. We were there yesterday. We will be there tomorrow, but today, we are home. The gastroparesis (paralyzed GI) will keep Michael from eating the traditional turkey dinner with all those rich, delicious home cooked side dishes. “Cheating” from his diet is not really an option for Michael. Straying from the few foods that he can digest would be self inflicted torture. He would wind up sick and in pain, so why even tempt fate?  It sounds like this goes against one of our life lessons of seizing the day, but there are exceptions to every rule.  Being home, it is enough. It is huge. I was not sure we would ever have a holiday together at home again. So we do not need a big dinner, and we do not need to be told to be thankful. We have gratitude for life in abundance. Overflowing, I would say.

This past month Michael’s liver has improved ever so slightly. Still 4 days a week at the hospital, that is the price right now, but the gift is his life. His AVN (avascular necrosis, death of bone tissue) has somehow gotten worse, even though he is off the dreaded prednisone. The bone in his knee continues to collapse and the AVN in his elbow now keeps him from lifting weights…. The worst part, without replacing his knee and the bone in his arm, he will never surf again. Sadly, the elbow surgery is not practiced in America, but we have hopes for a future trip to Canada, a fun road trip possibly, in a few years, when his ECP treatment is less frequent. We will deal with that at a different time. Not today. For now we know that the ECP for his chronic GVHD will continue for a while. So, it gives us time to evolve more, to become better humans. To share this story of hope and love and connection and gratitude and healing and beauty and on and on…..

As for Michael, some days it seems easy, other days he longs to be a normal kid. But not really. I know this will sound totally crazy, but given the choice, both Michael and I would not have changed this journey. We do not have regrets. There it is, acceptance. Because these 2.5 years have made us who we are. Maybe I really AM boring and repeating myself a thousand times, but these chats I have with you are also for me, of course. Reminding myself of how much I have grown and changed. Hopefully for the better. Reminding myself of how much I do have to be grateful for.

As always I will end with so much love for you all. We would not be here without you. The balance of the hardship has been the true friendships…. you……..

with all of my love

ashlee

It is November 15th, 2022. The first time in 3 years that we are not admitted to the hospital for the Thanksgiving holidays. There is still a week to go, so I should probably knock on wood. He has not been feeling great, lower hemoglobin than usual, but he is stable (she says as she shuts her eyes tightly and crosses her fingers). We go to the hospital almost daily during the work week, and it is like a job, with different benefits. But these days Michael is outpatient. We sleep in our own beds every night, with Kitty close by. Sometimes I can tangibly feel Michael’s relief at going home, but also frustration. It is hard to be “normal” when the days are broken up with constant reminders of your disease, past and present. The long term effects that were left in the wake of chemo, radiation, steroids, not to mention the transplant itself, make life complicated and though Michael is only 21, even his former youthful, athletic body has not been so forgiving or quick to bounce back. So yes, once in a while it is discouraging. I am grateful because most of the time Michael does see the light dancing in the distance. He truly enjoys sharing his experience and he seems to thrive the most when stretching out his own hand to lift up others. He is often asked what has kept him going, kept him so strong, and he openly, humbly responds, “love”. Love and connection.  Two of our themes. He remembers that he is loved, by many, and he is alive, a kind of miracle. But sometimes he gives into the “sad”. Knowing his life is still fragile. His bones are weak, osteoporosis at age 21. He is realizing that a life without surfing, without the gym, without in-person school, is harder than he thought. There are scars and bizarre discolorations all over his body. He knows he will not ever get his full “pre-cancer” strength back. He is conscious that his stomach will never let him eat the foods he used to love. Yin and yang. Balance, but mostly give and take. The scales tipping to one side then the other. That is the balancing act, I think. We do not stay too long on either end. The perfect example, on Michael’s 2 year “birthday”, the 2nd anniversary of his bone marrow transplant, a day to celebrate and be joyful, he got a text from one of his friends. They had not known each other long, but they shared the tightest of bonds because they were brought together by cancer. The  cancer friends “get” you without needing the commitment of time to know you. The reason for the union really stinks, but it brings the greatest of friendships, the closest of connections. This gorgeous, young, 18 year old woman/child let Michael know she was being discharged from the hospital to go into hospice. None of the treatments were working to stop her disease from spreading, and exactly like Michael’s dad, my husband, 6.5 years ago, she was going home to die in peace. Home meaning whatever it might mean to you. A place. A destination. Not the hospital. It was time to stop torturing this 18 year old with chemos that were only bringing more suffering, and make her comfortable with the people she loved. Two weeks later, she left her earthly body behind. It was an arrow through the heart for us. Another one, I guess. Our hearts were broken, or maybe ripped open, like so many times before. But here was Michael. Against the odds, 2 years post transplant. Breathing. Living. Yin and Yang.

Two days later we were invited to a joyful celebration of life for a few of the bone marrow transplant survivors, including Michael. These kids were miracles of modern medicine. There were only a handful of families, more nurses than patients.  We chatted with each other, compared notes on lasting issues, who was still taking what medications, passed on all the good energy for continued health and remission, and of course, shared our instagram handles. Ironically, at the same moment in time and space of this merry gathering, there was another blow in the works, the opposing force. The last breaths of a beautiful boy who had been in the bone marrow transplant unit with Michael 2 years before. He was part of a family we loved, we knew, and considered “our” people. A mama who had divulged her secrets with me for getting her son through the dreaded mouth sores. A dad who managed to smile, as we shared the BMT kitchen hoping that microwaving leftovers would make them tolerable enough for us parents to eat, even though we had no appetite. A little sister who had enough sass to compensate for her sick brother. This family loved each other fiercely, maybe they knew their time was short and packed the love of a lifetime into those 6 years. His heart stopped beating the very day we were out celebrating the BMT survivors. The irony is too ironic.  Why did it seem like every time we let go to rejoice, we got our feet kicked out from under us?  Or maybe I should take the high road and simply flip that upside down and remember that every time our feet got kicked out from under us, there was also a gift. A light. Hope. Is our glass half full or half empty? I guess we are just happy to have a glass…… thank you Charlie Mackesy for that….

I do not pretend to grasp any of this. My human mind seems to struggle when I ask the questions that start with “why”.  Why did my son get cancer? Why did he get all these terrible complications?  Why is he still alive when friends are not? Because there IS no answer. There is not the right path or the wrong one. I try to shift through my thoughts to find the morsels of wisdom to share. I cannot find anything new or original or unique. Just rehashing the old ideas of letting go. Balance. Surrender. Acceptance. Keep moving forward. Smile when it feels right. Cry. Dance. Sing. Shout. Hug. Connect. Hug again.

So, we had a hard week. Not because of physical pain. Because of spiritual and emotional anguish. Michael is improving slowly, cautiously, hopefully (knocking wood, crossing fingers, wishing on stars), but we have people we love who are not. And our hearts break. But we still must go on, we must be grateful that there are pockets of happiness, pockets of peace, grace, hope, love. And that every life touches us. Maybe that is the truth in today. We have met beautiful souls who are on this earth who love us and inspire us, and even though we think and feel and believe that their time was too short, it is a mistake, they SHOULD still be her, yet they have changed us. Made the world better. And they are now in us, part of us, lines drawn in our hearts, forever and ever….. Just as you are, reading this…..