An emotional week, from 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…..

Michael and Mom Talk Cancer: Episode 16, an honest conversation with Francisco (leukemia survivor)

Summary

In this episode, Michael and his mom Ashlee speak with Francisco, another 21 year old cancer survivor who, like Michael, went through chemo and a Bone Marrow Transplant. However Francisco was diagnosed with AML (acute myeloid leukemia) at the young age of 12 and received his transplant at 13. Francisco’s diagnosis was a long and painful process, physically and emotionally. In this very candid interview he shares how he is now physically healed, with no long term effects or complications, however mentally, it has been a huge challenge to “go back to the real world”. He experienced a lot of anger throughout the last years, as many cancer survivors do. This episode is not so much about cancer, but more about dealing with the aftermath, coming back to the world, how to communicate and survive mentally and emotionally. 

Transcription

October, 2022, an update from ashlee (AKA mom)… a heartfelt anniversary….

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…..

A September update. Still in quarantine, opportunities to grow, laughter, and a new rap…..

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 14th, 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…..

Michael and Mom Talk Cancer: Episode 15, ECP with humor, lessons, and connection

Summary

In this episode, Michael and his mom sit and chit chat around their dining room table.  A very impromptu episode, they laugh and joke about some of their hospital adventures, acknowledging that humor has been a key to getting through the rough moments.  Not only humor, but connecting to others.  These two are blessed to have each other, but they want you to know that you are not alone.  Reaching out for help is courageous.  These two know they have needed support and love.  Through all the struggles, this is how they have learned the most, gained the most depth and strength.  Join Michael and his mom and they talk through their cancer story that is relatable to all of us. 

Transcription

Here’s what happened in August….

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…..

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.