Author Archives: michaelandmomtalkcancer

I must start by letting you know that you are beautiful, cherished, appreciated-beyond-words, and I am so grateful to each and every one of you who continue to be there for us, keep us in your hearts, read my words, even when my thoughts are raw and not quite fully developed. Like today. 

This month makes precisely 3 years since my first “Michael update” and it was quite appropriately, a huge, heart-felt thank you. Little did I know I would still be thanking you, leaning on you, sending you messages, hugging you virtually, writing these thoughts on my computer from the hospital (now mostly outpatient), as I continue confiding in you about Michael’s health, our cancer and post-cancer adventures, and the path that is definitely far from linear. Our affectionately and appropriately dubbed “chacha”.

Today we are a bit all over the place. What’s new? Joy and pain. Celebration and sorrow. We mourn the physical loss of an inspiring, beautiful teenager as we prepare mentally for another who has perhaps only a handful of days left on this earthly plane. We remember the birth date of a sparkling, feisty little girl, family from the 6th tower, who passed before she could celebrate her 6th. We feel the pain, and of course fear, as we learn of more than one friend who has relapsed this month. Relapse has become a trigger word, far worse than any 4 letter word in our oncology vocabulary. We have realized that “remission” does not equal “off the hook”. Do not get me wrong, Michael is still in remission from cancer and we could not be more grateful. We only know of a handful of people who are 5 year survivors of his brutal cancer, so this 3 year mark is a tiny bit miraculous. In many ways. First the cancer. Then surviving the bone marrow transplant and resulting engraftment syndrome. Now living with the graft versus host disease. Sometimes chronic GVHD feels even harder than the cancer. Crazy, right? Life threatening. No end date. No roadmap. No protocol like when he started chemo. No getting back to normal. But bouncing forward, since we cannot and do not want to bounce “back”. Dancing. Connecting. Evolving. And the perspective that he is here. On earth. I get to hug him. I get to hear him laugh. Go with him to the hospital for treatment. Share a podcast and make tiktoks. Spread love together and a little humorous joy, too, in our not-so-serious cancer raps. How can I complain? Survivor’s guilt is real, but we acknowledge it and do our best to move forward with more depth and greater gratitude.

This morning was another one of our “big” days, as we met with Michael’s GVHD specialist at Sylvester, before heading into the hospital’s pheresis infusion unit for ECP (extracorporeal photopheresis). Michael’s bilirubin is mostly stable, but those pesky liver enzymes do not want to come down. Maybe they are his new normal, but the problem, as was clearly explained to us today, if they stay this high for too long (so far, yep, just about 3 years), it causes irreversible damage. And your liver is pretty important. For everything. It looks like the doctors will add the immunotherapy back into his infusion plan again, probably in November. We need to wait until after his knee replacement to change medications. The two don’t mix very well, immunotherapy and healing from leg surgery. His knee has collapsed a bit more and Michael is in more pain as we count down the days to surgery, scheduled now for November 7th. He limps, but he can still walk, still go up the stairs to get to our little 2nd floor apartment  So here we are again, perspective. It is so hard to complain about leg pain when two other cancer survivors we know, a 22 year old AND a 6 year old, are both going through leg amputations right now.  It is a blessing that Michael has a chance at 2 new knees. 

The chronic GVHD also shows up as scars and marks all over his body, on his fragile pale skin. Not the tanned surfer from his previous life, but he does look kind of rock and roll! His stomach, his GI, is pretty much classic GVHD. Not much appetite, limited foods he can tolerate. Skinny. Gaining weight is a magic trick we have not yet solved. Next week he will have another endoscopy just to be sure there are no extra red flags we should know about. His lung function is low but nothing to worry about right now. Huge sigh of relief. The avascular necrosis has gotten worse, he feels the aches in all his joints so for now, working out, other than supervised PT at the hospital, is on hold. The flip side, he has started playing guitar. A LOT. In the almost 5 months since he picked it up he plays so naturally. Passionately. He is becoming a musician which is kind of weird. He was always a lover of music but he never wanted to have anything to do with an instrument. Until now. When he was stripped of all his athletic pleasures, like surfing, sailing, going to the gym, he found a new outlet. I see him channeling his musician dad. It is very beautiful and another unexpected gift from cancer. There are so many gifts. Please do not hate me. It is not toxic positivity, but the rewards are real.

Michael’s mental state is incredibly, miraculously, unbelievably, good. He has a steady group of friends who have stayed close, who try to let him be who he is, even if they cannot quite grasp all he has and is undergoing. He has a lovely girlfriend. Support on social media. A strong voice. You all know he has his mom by his side. So, most days, he is hopeful and optimistic. Not always, of course. He has his moments of wanting to be a “normal” kid. And sometimes, like today, he looks at the huge needles in his chest and remembers that this is not normal. 2-5 days a week in the hospital, even outpatient, is not really commonplace. Most 22 year olds are not lying in a hospital bed watching their blood leave their body to return transformed, altered, so it won’t attack the host, Michael, quite so ferociously. Not everyone is living with constant physical pain. Especially at his age. He knows his friends are in the throes of the start of a new semester in college, classes, homework, social campuses, preparing to graduate this year. But Michael is not most 22 year olds. Which is kind of cool. A perk, too.

We were given a beautiful opportunity to be Keynote speakers at CancerCon last weekend in Atlanta. ComicCon?  Nope. CancerCon. That was truly incredible. It’s put on every year by Stupid Cancer, the biggest foundation for AYAs (and their caregivers). AYA= adolescents and young adults with cancer. Connecting with so many young adult survivors in one place at one time was eye-opening for both of us. All from different backgrounds, social classes, economic classes, religions, races, different sizes and shapes and hair lengths and all at diverse places in their oncology journeys, but so bonded by cancer. A certain, silent understanding. And Michael and I felt so at home and welcomed as we shared our honest perspectives and although we are realistic about the hardships we are enduring, we also shared the grace and joy we live with on a daily basis. 

We aspire to inspire! It gives us so much purpose. I cannot believe this rough road, this painful chacha, is pointless. I repeat myself too much, but I love you. The path is windy and hilly and full of detours, but we are still moving forward. Thanks to you all and your love.

We love you.

I love you.

Forever and always,

ashlee

Update July, 2023

Hello my dear, beautiful, never-ending-support-and-love, generous-and-caring beyond measure, family and friends, I am constantly searching for new adjectives to describe you all. I wish you could see and feel my heart. If a picture says a thousand words, my heart must say a million…. 

Today I cannot help but to feel overwhelming gratitude that I am still writing. That YOU are still listening. That Michael is still  alive. July of 2020, our lives stopped, but the world kept spinning. Or maybe we were the ones spinning faster and faster, while the world kept at its steady pace. It felt like we were spinning while blindfolded. Very dizzy and no idea where we were headed.  And it seemed like there was not a lot to hold on to. No safe place to stop and breathe. 

3 years later, Michael is still alive. A bit worse for the wear. Not quite who he was before, but also better in a lot of ways. Thinner, more fragile, but so much more powerful. So much stronger. So much more. More compassion. More empathy. More love. 

My own heart has been broken time and again, not only because of the ups and downs with Michael, but because we have met, befriended, loved, supported, shared hospital time and treatment stories with so many who have not survived. Who have passed away. It is more than survivor’s guilt, it is the deepest of pain. “Why” becomes the elephant in the room. A few weeks ago a beautiful, 3 year old, angel-boy-child we knew from the oncology floor at Nicklaus,  innocent, sweet, pure, took his last breath. Why? And today, we pray non-stop with every ounce of hope and love, magic and miracles possible, for another dear friend, who is facing the most devastating scenario any mother can imagine. Again, why? There is no why. I cannot explain any of it. We don’t know why Michael is here and others are not. I cannot explain why and how he was given this cancer in the first place. I do not know why he is facing such difficult chronic graft versus host disease from a life saving bone marrow transplant. A complication that takes his energy, that has scarred his liver and mouth and skin, that keeps his body so thin, that requires him to be immunosuppressed and on medications and blood treatments. I also cannot explain why we have been given the chance, given the opportunity to use our voices for a purpose. To rise up and step up and share. Why we are somehow facing every day with joy and optimism and peace, even though from the outside, it doesn’t look like we have so much to be happy about. But still alive!  And using the time for good. No matter how long or short the time may be….

This past week we met with Michael’s GVHD doctor. His liver has not been improving the way the doctor had hoped, although it is functioning and seems to be more or less stable. The doctor will probably start him on a new immunosuppressive drug next month, the weekly immunotherapy infusions Michael was given throughout the month of June do not seem to have helped as much as expected. Another medication means more side effects. Sigh. There is always some sort of catch, some kind of exchange, a deal with the devil, with any and all of these drugs. The doctor also told us quite frankly that we need to keep a closer eye on secondary cancer screenings. After so much chronic graft versus host disease, after chemotherapy, after radiation, the damage adds up, takes its toll, and will often cause new cancers. We do everything we can with diet and exercise, mindfulness and purpose, love and hope. I do not want to sound like we are victims of western medicine. We are not. We have benefited far beyond everyone’s wildest dreams. I have the proof. And honestly, we really are focused on holistic, WHOLE healing. Medications and meditations. Drugs and nutrition. Body and spirit. His beautiful team of doctors agree, amazingly. For that we are so grateful. 

And the lessons keep pouring in. We continue to share them. I think as long as we are here, we are compelled to find the beauty in the pain, the hope, the love, the gifts, the purpose behind it all. It is not quite being grateful for cancer, but grateful that maybe we can do something good because of it. Make a difference for someone. 

Michael got his feet wet in the ocean this past weekend, and not just his feet, his whole self. He even stood up on a foamy longboard and managed to look like a stoked surfer. That was pretty remarkable. And moving. And tear inducing. The waves were small and soft, it hurt his knees and elbows, but his face was glowing with joy. Mine too. Perspective. It was the first lesson we learned when Michael was diagnosed. It is still the biggest lesson 3 years later. 

July 14th, 2020 was a day that started with the sun coming up, the world turning at a regular old pace, and me, a single, working mama with 3 lovely teenage kids. Looking back, I don’t know why I was not more worried about driving to the hospital with Michael that day. And well, you all know the next part of the story. The discovery of a mystery blood cancer. A 3 week delay while multiple pathologists tried to solve the riddle. The diagnosis of a rare disease we were told not to google. Only a handful of survivors worldwide. But for some reason we never lost hope. 

My heart breaks for so many we have met that have suffered so much, but it also swells up with so much gratitude for having met them. And you. You are the why.

3 years and about 100 years of lifetimes and lessons and we are still here. I am still a full time caregiver mama but doing all I can to help those other caregivers out there. And still dancing. Still doing our chacha. Because of you. 

I love you

Today is July 14^th, 2023. Exactly 3 years since Michael and I got in the car at 7am to make the 45-minute drive to Nicklaus Children’s Hospital for the Bone Marrow Biopsy that completely turned our lives upside down. Or backwards. Or maybe the day that froze us in time, while the rest of the world kept spinning. Three years later and we have both aged about a hundred years. It feels like we have lived lifetimes, so many years of so many lifetimes, in these last 36 months. But we are here. Still breathing in the air of this planet earth. Still smiling. Still dancing. The never-ending cha-cha. Fulfilling a new-found purpose. As far as appearances go, less agile, more fragile. Our insides are mushy and soft. Maybe that is better than strong and hard and crumbly. We are warm and full of 4-letter words. Not curse words. Words like Hope. Love. Pain, too. A lot of pain. And hurt. Gift is there. And good. People are so good. And I think they care, you care, so much more than we ever imagined. 3 years since what seemed to be tragedy hit our little family of 5 minus one. But out of the pain, so much beauty. Our theme. We have no idea where we will be tomorrow. Well, probably at 1 of the 2 hospitals that continue to treat Michael, but you catch my drift. Perspective was our very 1^st lesson 3 years ago, and it is still the biggest, most all-encompassing lesson today. And day by day. Moment by moment. Nothing in life is linear. But it IS deep and wide. We believe in magic and miracles and grace. We have been granted so much grace. Beauty in pain. And love. The love is endless and grows exponentially, if you allow it. We love you, we are grateful for you. 3 years ago today…. No. It does not feel like yesterday… but we are so grateful to continue to feel. To be here. To share with you.

To my dear beautiful friends, family, guardians of HOPE, because that is what you are for us, the constant reminder that we are connected to the world, to life, to HOPE, because of you,

In May we celebrated Michael celebrating another birthday, which in itself felt miraculous and magical. After almost 3 years since his cancer diagnosis, every day that he wakes up still seems a bit wondrous. Not to be morbid. Not to be negative. Not to be “oh ye of little faith”. But every day for the last 1080 days, I wake up and can’t wait to hear his voice, to know he is ok, still part of this earthly existence. Every day is still a gift. I hope it does not wear off. Ever. 

We also remember that it has been exactly 7 years since my husband Patrice, the father of my kiddos, died at home, in hospice. I think there must be a thing with the number 7. Like the “7 year itch”. “Lucky number 7”.  7 days in a week. And the biblical one: “On the 7th day…….”  I googled number 7 because honestly I don’t know so much about numerology. I still don’t. But apparently 7 signifies learning and reflecting. Makes sense. We have been reflecting a LOT lately. Seven years ago when Patrice died, it felt surreal. The very cliche dream that I could not wake up from. It was like a movie about a different family. A part I was playing, wife turned cancer caregiver turned widow. 7 years and so many lifetimes later, the hollywood film has become a home movie. We watch it and remember that we lived it. We talk about Patrice all the time. More now than ever. He is with us, inside of us, around us. I see him in Steven’s deep green eyes, I hear him in the guitar Michael has recently picked up, I feel him in Jennifer’s sweet sensitivity to the world. He comes into all of our dreams. The 7 year itch seems to be playing out as “don’t forget me. I am still in your hearts and souls and some of your DNA.” We don’t forget because as we seem to say so often, life is not linear and what happened 7 years ago still touches us so deeply. And widely. And profoundly.

Then there is Michael. Another surreal happenstance. Michael and this mom and our continued journey together, our chacha and never-ending lessons that we cannot stop sharing, hoping you are not sick and tired of us and our messages that we cannot shush. Neither one of us tend to be “loud” people, but our voices have gotten stronger as we realize we are not meant to bounce back from this, but instead bounce forward. Merriam-Webster defines “bouncing back”: to return quickly to a normal condition after a difficult situation or event. It has been a difficult situation, that part is true. Will we ever be “normal”? So many wonderful people have told us we are strong. We are resilient. We WILL “bounce back”. But I don’t know how I feel about that. No, I take that back. I’m pretty sure I do know, I don’t want to bounce back. I thought I did. We thought we did. When Michael was diagnosed, we faced the diagnosis and chemo and even the BMT head on. We were full of mental fortitude. Michael was young and had been so healthy, we would get through this, come out on the other side, get back to normal life. This was a detour but we would “bounce back”. I am not quite clear when this perspective shifted, but it was pretty early on during his treatment. It was so intense. It was too life-changing. We could not go back, only forward. NOT because one cannot recover from sickness or from life pushing you down, but because when you DO recover you are not the same. We are not the same. Hopefully, better. Stronger. Deeper.

Since the last update Michael started a new immunotherapy at Nicklaus. It is a lengthy infusion, the idea was to give it to him once a week for 4 weeks, then once a month for as long as it seems to be helping. His chronic GVHD is not worsening, but not improving, either. It has reached a kind of plateau and his doctors are hoping the immunotherapy will give him a little boost, a little jump, a little bounce forward. His team did try this same infusion once before. It may have helped somewhat last time, the doctors are not convinced one way or the other. There are so many variables in this sort of thing. We always say that his treatment is far more art than science. Or balance. Give and take. Sometimes shooting arrows in the dark because those arrows hit the target on another GVHD patient in the past. Chronic GVHD is considered a “rare” disease, and definitely not one size fits all. Different cocktails, recipes, combinations of drugs work so differently for each cGVHD patient. Michael is still on oral medications, plus extra corporeal photopheresis, ECP (the fun blood treatment with the gigantic, painful needles that he does at Sylvester twice a week). The combo of oral drugs and ECP have gotten him out of the woods, that is for sure. There are still a lot of trees, especially in his liver and GI, but when we look up, we see the sky, the occasional shooting star. The idea behind adding this particular immunotherapy was to see if we can clear the trees just a tiny bit more. Maybe enough to see the moon and a few planets. So far, it has been exhausting, but not so terrible. And Michael really does not complain. He has to get IV Benadryl before the infusion which sounds like a relaxing nap, but instead it causes him to be fidgety and irritable for a few hours. It makes my inspirational, super hero kid a bit more human. Sometimes I wonder how he handles it all in stride so effortlessly, with so much poise. Hence, when he gets a little cranky, I think, “Whew, he IS my kid after all!” It is a little crazy how well he/we have adapted to spending these long days in the hospital. It is simply part of our normal routine. Our job. Our school. Our life. 4 days a week in the hospital outpatient has become a gift, it means we spend 7 nights a week (lucky number 7!) at home. In my past life, even when Patrice was going through cancer, time in the hospital was traumatic. An overnight admission was so scary. After having spent hundreds of nights in the hospital, now hospital time is our groove. And not so bad. Kind of special and kind of beautiful, full of the best people ever. 

Today is the 4th planned dose of immunotherapy, let’s see what his innovative, artistic, brilliant, wonderful doctors think. If they decide to continue a few more doses or let it rest. We hope he gets at least a little break from immunotherapy because once he is off immunotherapy his orthopedic surgeon wants to go forward with Michel’s first knee replacement. They do not like to replace knees at his tender age and with his level of immunosuppression. Most knee replacements last between 10-20 years, and Michael is only 22, but we are going for quality of life and having knees that are not always in pain will be a game changer for this kid. He will be able to walk more, maybe even bike. They will start with one knee, see how long the healing takes, then do the other. Both knees have stage 4 avascular necrosis. Total collapse. There is no cure other than total replacements. But we are just blown away that we are talking about knee surgery. One year ago talking about knees was like talking about dessert. Or jewelry. It was an accessory and waaaaay far in the backseat.  We know this is a life-long commitment and Michael has a high risk of more long term complications. But he is alive. Surpassing all expectations. So you know, let’s just bounce forward and go for it. If knee replacements help for a few years, we are all for it. 

And you, you are our trampoline. You have given us the impetus, the means of bouncing. You are our magic and our miracles and our hope. 

We love you so much. We are so incredibly grateful and we are doing all we can to make you proud. I love you.

ashlee