Author Archives: michaelandmomtalkcancer

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…..

As usual, my mind is racing with a thousand thoughts, a million things to share. The last weeks have been so full of revelations, although probably nothing original or trailblazing, just more moments of remembering how much we don’t know and how to continue to live life fully through the uncertainty. It is not only a cancer diagnosis that makes life fragile and finite. It is like that for all of us, but cancer is the lens that puts it into focus, perhaps. There are tragedies like heart attacks or car accidents or natural disasters that take a life in an instant, there is simply no preparation. There are those who die peacefully of old age, less shocking, nevertheless sad. Then there is cancer. In order to treat most cancers, you must first poison, yes, poison, the host with chemo and/or radiation. You find out you are sick, then you get sicker. And sicker. And sicker. And your clinging hope is that the cancer is put into “remission” before the treatment gets you. Then, if you are lucky, and you are finally declared “NED”, no evidence of disease, the world celebrates! A party where you cannot drink the alcohol, cannot eat the rich foods, can hardly stay awake because you are so exhausted, are terrified to hug the guests because you are still immunocompromised, sit in the corner because you have forgotten how to socialize, and cannot decide if this party is just unimportant fluff, or if is it something you should be attempting to enjoy. The side effects that you are left with, physical and mental, are often just as ravaging as the cancer. Maybe worse. But you are alive. So you should be grateful. But you have been to the other side and that does not get erased from your memory. Ever. Suleika Jaouad writes about this so beautifully in her book, “Between Two Kingdoms”. That undefined moment when a “survivor” is neither in the “kingdom” of an in-treatment cancer patient nor a healthy human. Between the two. She writes about this dilemma from the perspective of a cancer survivor, but it is true for caregivers, too. I should know. 

Michael is not yet “between”.  He is still on the “cancer patient” side, but we are already starting to see how returning to the other life will be a bit daunting. For both of us. Our news of the week, he needs to continue to go to Sylvester Cancer Center twice a week for ECP, that delightful blood treatment (ok, a little sarcastic, but the nurses ARE so enjoyable!) with the enormous needles. We had hoped that the schedule could lighten a little, a small break from these last 28 months of a nonstop hospital regimen, but chronic GVHD is not to be messed with, and his expert GVHD doctor does not want to put Michael at risk again, changing the course that is seemingly keeping his white blood cells from wreaking more havoc on his already battle-scarred organs. Two days a week sounds easy, but the treatment is tough. His nurse compares it to running a marathon twice a week. And it keeps things like the ocean, large gatherings, and lifting weights off limits for a while longer. As always, I wish I could trade places with him, give him my observer’s seat at the edge of the bed, take his place under the hospital sheets to get stabbed in his place….but we still have fun. I know that sounds crazy, yet even Michael agrees. Our nurses are amazing and make every treatment like an exclusive, invitation only, social event. He also continues to go to physical therapy twice a week at the hospital, to strengthen his knees and elbows that suffer from avascular necrosis, a side effect from steroids and radiation. His bones are a bit hollow, more like a grandpa than a 21 year old, some of his joints have collapsed, but he is walking, no more wheelchair. He swallows almost 2 dozen pills a day, to suppress his immunity, to help regulate his stomach, to aid his liver function, antibiotics, antifungals…..he has become used to it, many of those medications will stick with him for life. It is hard to remember a time that I did not prepare those 3 pillboxes for the day. 

The flip side, the side we really do focus on (pinky swear!), he looks so good. Like really, really good.  His hair is pretty much the envy of anyone who likes a good “do”. His smile lights up the room. Literally. Any room. He is thin, but not the emaciated, weak 21 year old from a few months ago. His skin is scarred and full of marks, he has some kind of weird camouflage looking discoloration across his back and neck from GVHD, but we are so thankful he is no longer the glowing yellow that indicated all signs of liver failure. And those scars, each one is a reminder of something he has survived. Or overcome. Once someone suggested that in the future he should laser some of the marks to make them less prominent, but I think he wears those scars with pride, not shame. His eyes sparkle, too. Maybe that is cliche, but I swear he does have a twinkle of good humor, mischievousness, life in those brown eyes of his. There was a time just 6 months ago that his gaze turned distant and even when he did smile, his eyes remained withdrawn. The returned light is maybe less naive than pre-cancer Michael, but it is bright and optimistic, full of hope and a new openness.

I know that much of this entry may sound negative, but it isn’t. It is just the reality that we are now living. October 27th, 2022, Michael will be celebrating 2 years post Bone Marrow transplant. It feels like so much more than 2 years. I think post transplant years are longer, like dog years. Maybe this is like 20 years of regular life? It is a big deal that he is alive, somewhere in the Kingdom of Michael, wherever that undefined, timeless space might be. We acknowledge the miracle, probably this mama more than anyone. Not only is he alive, but I revel in the fact that we have both grown so much. I may be the parent, but I have definitely been a student these last 2.5 years. More than ever I understand how complex and alienating cancer is. It can be painfully isolating. We have learned this the hard way. We have felt alone, even when surrounded by nurses and doctors, even when friends and family have been there for us. We have seen it in others who have preferred to disconnect and keep to themselves. But I also accept that this can unite us, both as family, and community, if we allow it. Which leads to the most beautiful development. In the last months, we have been granted opportunities to share our lives, our insights, our fragility, and maybe our strength, which has come from embracing our vulnerability, and making the decision to connect with others. I know this could have gone many different ways with Michael. So many “what if’s”. Most cancer survivors will tell you they hate it when good hearted people tell them “everything happens for a reason”. What could the reason possibly be that one survives while another does not? That one gets this disease while others are healthy? I understand. It is a very hard pill to swallow. Harder than the dozens Michael gulps down on the daily. So I will not use that phrase, but I will say we choose how we react to what we are given. The lesson that we must remind ourselves of every day. And thankfully, magically, extraordinarily, Michael and the family (you, reading this) that surround us have chosen to react with grace, with love, with connection, with hope.  October 27th, 2020 was the beginning of a new life, a chance of survival. October 27th, 2022, we are honored to be here, to continue to share news with you, to make raps and videos, to tell this story, to write, to be part of the kingdom of life…….  There is no where else we would rather be…..

I cannot lie, it has been a tough couple of weeks. Nothing crazy happened. No recent hospital admissions. No brand new complications. No midnight visits to the ER. It sounds good. A breather. Like life is easier. The last 2 years have been so full of highs and lows, our roller coaster ride. Or chacha. Whichever metaphor you relate to more. And believe me, we are so grateful for this moment, we are so grateful that things are stable, so grateful for survival. But sometimes being on a plateau is also mentally challenging. I think my 21 year old man/child is antsy, eager to move on, charge ahead as a better version of himself with so many deep, meaningful life experiences. Covid made that restless feeling relatable to pretty much everyone. Remember how people everywhere were just so excited to get out again as the covid restrictions were lifted? To go to the movies, restaurants, concerts, and shows. To hang out in groups and see friends and hug again. To dress up or even simply to step out of the house without a mask. The world had cabin fever. Depression in young adults skyrocketed, mostly due to the isolation. Well, for Michael, the quarantine continues. Ok, I know what you are thinking, but he is alive, against all odds. We should be grateful. Yes! Of course! We are more than grateful. We are forever changed. We are blessed. We have learned a thousand lessons that we will work hard never to forget. I think we both have aged a hundred years in the span of 26 months. In a good way. Like a new wisdom has been granted to both of us. We do not take this for granted. Painfully, we have witnessed other beautiful humans, Michael’s age, who were NOT so lucky. But the last few weeks have been a reminder that his restrictions are not ready to be removed or loosened. His immunosuppression must continue for a while. Be patient. He is not on the same timeline as his friends who are in college or have recently graduated. He is not on the same timeline as some other cancer patients we know. He is not on the same timeline as other bone marrow recipients we know, who have returned, in a way, to normalcy. The medications are slowly calming down his feisty immune system, but how long it will take is the mystery. The fear is that reducing the immunosuppression will also jump start the GVHD again. So we wait. An MRI this week showed the avascular necrosis that is affecting his knees is now in his elbow, collapsed bone and small fractures making it impossible to straighten his arm, to lift much weight. He had the incredible pleasure and tease of surfing a few weeks ago. It was painful, but being in the ocean a few times was beyond miraculous. Unfortunately, since re-starting the ECP treatment, the ocean is off limits again. We hope it is temporary. The immunosuppressive drugs and infusions that are keeping his bone marrow from attacking his liver are also keeping him from having enough immunity to go back to school or big social events in person. Gastroparesis is keeping him from enjoying food or gaining much weight. But again, we are grateful that he is alive. Perspective first. Always. A beautiful reminder about what is important. But quality of life is precious, too. So, my surfer boy and I must find value in different things, like connecting with others virtually or aspiring to inspire on social media, or simply with our optimism. Because yes, the last few weeks have been kind of a blow, but at the same time if you listened to our latest podcast, you heard Michael and I talk about laughter, joy, finding the humorous side to our “Michael and Mom Talk Cancer” adventures. It is kind of ironic how much fun we do have together. It sounds crazy. For sure I did not expect so much laughter when Michael was diagnosed with cancer July 14^th, 2020. I remember seeing my world collapse. Transform in a heartbeat. Nothing would ever be the same. Now it is 2 years later and even after everything he has been through, he manages to laugh his Michael laugh. And smile. And move forward. As a mama, watching him, supporting, holding, loving, advocating, not able to take away his pain or to fix his body or get rid of his scars, not possible to guarantee his future, me too, I cannot help but to continue to dance and keep my forever enthusiasm. This long and complex journey has been so full of goodness and love and blessings. We share our experiences without shame, and aspire to support those going through whatever difficulties they are facing. I cannot explain why we feel so strongly about connecting with others, why he is alive, why we started to make lighthearted raps and videos about our grave situations. But I can offer this, while it is true that toxic positivity is a real thing, I think we have a genuine non-toxic perspective of optimism. Most of the time. Of course it is not always singing and dancing. The last few weeks were tough. Facts. We are not joking 24/7. There is not an eternal smile on our faces or the constant ringing of laughter in our home. Sometimes I look at his scars, his suffering, the port on his chest that is constantly bruised from being accessed so much, and my heart breaks into a million pieces. I wish he did not have to swallow over a dozen pills daily. I wish he did not have to do ECP. I wish he could go to college and get in the car with his brother Steven to drive up coast and catch some waves. But what we have found is so much purpose. And connection. Because when you go to a dark place you can either stay there, or use it as an opportunity to grow, to learn, to find meaning. Sometimes we want to avoid the hard things in life.  As a mama, I want my kids to be happy! But that is not always possible. We NEED the hard things to grow. To find the light. If it is always sunny, you can’t see the stars. And the stars are kind of magical. 

As always, I am too verbose!  But that is the backstory as to why we made our latest rap. To say, ok ECP, just like cancer and GVHD and AVN, you kind of suck, but we are going to have fun with you. We poke a little fun, challenge ourselves, to make us feel normal and not so bizarre. Because it is a little abnormal, this post BMT life we are leading, but also so fulfilling and enriching. 

Thank goodness for you all. Your connection to us has kept us grounded, given us purpose and meaning.  We love you and are so grateful, today, this week, and for ever and always…..

It is time to reach out again, to bring you in close, hug you tightly, and share the next chapter in this story that started out as a terrifying cancer diagnosis, but has turned into a spiritual journey, an emotional awakening, mental enlightenment….with probably more ongoing physical health AND life challenges than we had imagined! “Ongoing” being the key word…..

But I will start this with the happy news that we are still home, we have been sleeping in our own beds for over 3 months now…… that is a milestone we do not take for granted. I don’t think I will ever underestimate the honest-to-goodness joy of being “home” again.

First, on the practical side, the physical state of Michael. We have talked a lot about steroids in the past, in particular prednisone. The magical medication that has saved him, but also left a heck of a lot of lingering destruction in its wake. Mental. Physical. Emotional. Spiritual. It is now one year since we discovered that Michael has avascular necrosis, AVN for short. Simply put, death of bone tissue due to lack of blood supply, for Michael, we can thank (blame) prolonged steroid use. Mostly his knees and his elbow feel the joint pain, but the necrosis is spread out pretty much everywhere. The orthopedic surgeon at UM gave him the “official” diagnosis of AVN last September and we were to follow up 3 months later, after starting fosamax, a medication to help the bone density. It would not necessarily heal his bones, but it could hopefully stop the necrosis from progressing and wreaking more havoc. He would need a knee replacement down the road, fosamax was a good place to start, though. But as things go in our unpredictable life, Michael never even took the drug. His liver GVHD turned for the worse simultaneously with the AVN diagnosis, and as you may or may not know, most medications are processed by the liver. So, if your liver is not functioning, new medications are pretty much taboo. The fosamax treatment was put on hold. As much as walking without pain seems like a pretty standard request, the focus on his liver was definitely the priority. AVN was forgotten for the time being, or maybe forever. Michael was admitted to Nicklaus for that long 5 month admission, November 2021 to April 2022 and the pressing question was whether or not Michael’s liver, and Michael. would survive. His knees could wait. BUT, finally, incredibly, miraculously, August 2022, Michael is now at a place where his doctors are looking at other body parts, trusting that his liver has improved enough to let it take the back seat for a moment. Quality of life has re-entered the conversation. Wow. I never ever thought I would say or write that again. So, a full 11 months after learning about the AVN, we returned to the orthopedic surgeon to see if we can take some steps towards less pain, and more mobility for this previously athletic, active kid. We know the AVN is irreversible, but given Michael’s age, Dr. Hernandez (the truly amazing ortho doctor) is hopeful that building strength with PT (which Michael has been doing the last 2 months) and starting the fosamax now, could help him avoid a knee replacement in the near future. His body needs a little more healing. He is still immunocompromised, not an ideal candidate for elective surgery. Sometimes we feel like we are living in the Alanis Morissette song, “Ironic”. Because of course, this unlucky bone disease started with the prednisone that was doctor and devil all in one. But let’s focus on the beauty in this part of the story: we are talking about Michael’s BONES, not vital organs. THAT is a miracle and a victory. For the past year his liver function was so dangerous, the AVN was put aside. Now we can think about physical activity. He is doing PT twice a week, we are working out together with light weights at home, we are swimming, even paddling on the surfboard again. That last part is big. Like gigantic, enormous, huge, emotional kind of big. Michael was given the go ahead to submerge his whole body into the ocean, depending on the week, depending on his immunotherapy treatments. So last week, we braved the risk of infection, and this kid of mine put his whole body back in the sea water. After 2 years of no ocean, 2 years of looking at the sea from a distance, 2 years of listening to the waves crash from the shore, 2 years of following orders and steering clear of our healing salt water, he swam out against the current, submerged head first under the water. I think the doctor’s call was more like benefit vs. risk and benefit won. Finally. Until the Alanis Morissette melody kicked in again, and ironically, the ocean may be on hold again in just a few weeks. While it’s definitely improving, Michael’s GVHD is still active, in his mouth, on his discolored, patchy skin, and even in his liver. Yes, his liver is so much better, but marked with fibrosis, like an old guy who drank too much in his youth. Skin and liver are organs that have a beautiful ability to regenerate. Thank goodness. And while steroids are out of the picture for Michael (hopefully forever and ever), It looks like his body would benefit from ECP again. Extracorporeal photopheresis. Not sure if you remember that time-consuming treatment he went through for a few months last year. It was intense at the time. It’s a blood treatment with no side effects of medication, no drugs for the liver or kidney to process. It is invasive, though. They access his vortex port by poking him with 2 huge needles (Michael says they “stab” him), take blood out of his body through those one of those needles in his chest, spin the blood super fast in a cool machine to separate the white blood cells from the red cells, plasma and platelets, return those red cells back to his body, treat the white blood cells with some chemicals to make them photosensitive, then pass them through another part of the machine to activate them with the “photopheresis”, lastly, return the treated white blood cells back to his body. Did you get all that? The idea is that the photo activated cells are now weaker, and cannot attack him with so much force. It’s a long process, maybe not 9am-5pm on the machine, but still tends to take up the whole day. The huge needles used to access his port are a little traumatizing, but the team of big-hearted, expert ECP nurses we met last year did make up for that. We thought Michael would never go back to ECP. But again, benefit vs. risk. And again, yep, he is healing, but active GVHD is still GVHD. His graft is still attacking him, battering Michael, the host. Not as threatening as this time last year, but why tempt fate? So, we huddle again, talk pros and cons, discuss the risks, and now, at 21 years old, full of so much, too much, life experience and knowledge, Michael’s voice is strong and not trembling, as he says, “Yes, I want to do it. Start ECP.” We have no start date yet, no clear plan of how many times per week, every other week possibly, or for how many months, most likely years. We know it will again limit his visits to the ocean. Open wounds are too vulnerable for the sea water, and those needles are big. But we are still optimistic and grateful that Michael is here, alive, being treated, making choices.

In the last months we have both been inching our way towards the humble goal of helping others who have been handed similar shoes to walk in, even though we know it is definitely not one size fits all, and each of our paths are unique. Yet we hope that sharing some of our empathy and compassion and experience may help someone. The understanding that we are not alone. None of us are alone. We continue the podcast, the website, Michael keeps posting his incredibly inspirational tiktoks, I continue to work on writing our story for a book one day, and we have both started support groups for cancer survivors and cancer caregivers on the app Circles. We continue to go to either Nicklaus or UM multiple times a week, with ECP, it will be more. But it never fails that each time, we run into people who we know and love, or we talk to people we had never met, and we are always connected because that is part of our life lesson, the human connection. Finding the purpose. We believe, even more now, that it is not what happens to you, but how you react that matters. We are all here for a purpose and we hope that this crappy cancer has pushed us to ours…….

I love you always. You are my inspiration and motivation and I feel so blessed each and every day, thanks to YOU all and your gift to me…. Your gift of love and prayers. Your gift of being in our lives…..

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……