Author Archives: michaelandmomtalkcancer

An August, 2024 Update: “Cancer-versaries”, memorials, celebrations, and if not now, when?

August, 2024

To my dear, beautiful friends and family who move me to tears of gratitude as I sit down to reflect, to ruminate, to sum up a condensed account of recent weeks,

Last month was exactly 4 years since Michael and I were told, ever so delicately, with a kindness I will not forget, and a heavy weight which will never leave my memory, that Michael had cancer. Dr. D’s exact words: “This is treatable. We don’t know the precise type, but your son has cancer.” He said the word “treatable” a lot. Then he added “blood cancer”, “leukemia”, “maybe lymphoma”. Michael needed a port placed right away. He would be admitted to the hospital and start chemo the next day. That was July 14, 2020. But it took until August 3rd to be handed the tiny slip of paper that I carried around in my pocket for weeks. The torn paper with the handwritten words that etched themselves into my being, “hepatosplenic t-cell lymphoma”. The note was quickly followed by the infamous advice from both Dr. D. (Michael’s oncologist and new best friend) and his gorgeous NP Erica: “Don’t google it.” People ask us all the time, but did we? Nope. At least not then. I was too scared to know what the internet might have in store for me. Misinformation aside, I was far more worried about the correct information. From specialists and researchers. I grasped enough to FEEL it was not a “good” cancer. Not that any cancer is. But instinctively we knew Michael must be an unusual case at the very least, by the slew of residents who appeared every morning in the 6T hospital room, rounding with Dr. D to hear our answers to the millions of repetitive questions. Michael was so popular. Of course he’s a great kid, but there was more to his sudden celebrity. Maybe the biggest clue was finding out that there was no protocol for this cancer. No set list of chemotherapies that worked. I will never forget on day 4 of Michael’s first cycle of chemo, long after rounds were over, Dr. D bounded into our hospital room so joyfully, to reveal that he found an obscure article about another toxic chemotherapy cocktail that might possibly help Michael get into remission. Wasn’t that great news? His excitement was a kind of revelation. I truly understood that no one DID have the one answer for this hard-to-pronounce disease. Not the cause, not the cure. But there was a flip side. So many incredibly brilliant humans were putting their minds together, spending hours, on and off the clock, searching for possible answers and promising treatments. That was its own magical miracle and gave me so much hope, seeing the humanity and true desire in these medical professionals to give Michael a chance at life.

As you all well know, or can imagine, each of these “cancer-versaries” bring up so much emotion. This year, on August 3rd, 2024, it was not only the vivid memories of Michael’s day of diagnosis and 1st cycle of chemo, but it was also a day we attended the memorial service/celebration for a young mother, wife, friend, fellow dancer, costume mistress, all around beautiful human, who passed away from cancer much too early. A story I seem to tell far too often. But she was someone who lived her life so passionately, so fully, even if in my mind it was cut short. She is yet another sign not to wait. We cannot wait to be joyful. We cannot wait to love. To pursue our dreams. Or just be still with family and friends. Michael and I attended the celebration of life for this friend, smiling at the funny anecdotes, tearing up at the emotional stories, but both of us were also deep in our own memories of that same day 4 years earlier. Getting used to our new life that would never go back to the old one. Wondering how many months, weeks, days we had left together. How we would get through this. Trying not to ask why. And then flash forward to 2024, and I cannot imagine living without this overwhelming gratitude that he is alive. Not to be taken for granted. AND I am still by his side. Four years ago, Michael had 8 months to live. Four years later, he is my podcast co-host. The inspiration who stands next to me as we speak, advocate, and share our story and motivation. The 23 year old who blows my mind daily, even if this mama may be a little biased. Being alive  is something to recognize, celebrate, commemorate, even as we mourn the loss of a friend.

In the last few weeks Michael has been pushing his new knee like a pro-athlete determined to get back in the game. Now 7 months post surgery, GVHD has perhaps slowed down the healing significantly, but Michael is not giving up. No way. He is driven to surf again, not to show off, not to get attention or girls, not to prove himself, but because it is one of his passions. It fills his soul. And I think we both have that fire to LIVE NOW. Not wait. If he does not try to surf now, when? The future is still so murky. Cloudy. So between ECP treatments, when his port is reasonably healed, we are taking that calculated risk of not only getting to the beach, but submerging in the ocean, and ever so resolutely, standing on that surfboard. “Popping up” to the standing position is not yet graceful. His knee delays the movement that the rest of his body still remembers from his past life, pre-cancer. But he is on a board. In the ocean. I believe that is even more healing than all the many medications he still swallows 3 times a day. Every day.

Just like last month, his labs are stable. Not better, not worse. His skin is still fragile and bruises and reddens at the lightest touch. The GI GVHD continues to annoy Michael, as he struggles to have an appetite, eat more, gain weight. No matter what we do, what medications we try, what foods I prepare, his stomach is stubborn. But again, stable. He CAN eat. Not everything, but enough. That is a gift. His liver enzymes remain elevated and that is perhaps the greatest worry. It keeps us humble, on our toes, not quite out of the weeds. Maybe this also gives us that continued perspective we feel we must share with the world.. The infinite love that cancer has brought to us. There is a new drug, a new immunotherapy that has recently been approved for chronic graft versus host disease. This week we will meet with Michael’s GVHD doctor to go over all the usual, but also see if it may be a good fit for him. We also see the orthopedic surgeon this week and Michael is beyond excited to show him how his knee is improving. Next week, the GVHD pulmonologist is on the schedule. Then eye exams to watch for the cataracts that form so frequently in cancer survivors who had radiation and chemo. In a few weeks another follow up with ENT keeping track of the mouth sores from GVHD that do not go away. Making sure they do not turn cancerous. But it is all in a day’s work! Grateful we HAVE this team. This day. This moment.

I see a shift in Michael’s energy. Four weeks ago he was struggling as he came to terms with this chronic illness, the unknowns, the limitations, the constant labs and doctor visits that will probably last his lifetime. But in the past few days I see Michael  standing straighter, taking more chances, accepting his life. Our life. I am not saying it is easy. And it is a daily practice. Like brushing your teeth. “One and done” is not a thing living with the physical pain, the mental struggles, the many emotions that come with cancer and the long term after effects. But we are practicing. And reminding each other to continue to move forward. To try to make the world better, try not to forget how incredibly blessed we are to be here. 

I love you so much and I know we would never be here without you. Four years of a million lessons and four years of infinite love. Thanks to you all.

Forever grateful…..

The 4 year anniversary of Michael’s Cancer Diagnosis, an update from ashlee, reflecting on July 14th, 2020

Today is July 14th, 2024. I am writing this heartfelt letter to you, this monthly, intimate update that has become so integral to my existence, my life line to you, to the other world, the world outside of the hospital and oncology, cancer and complications, while celebrating an anniversary of sorts. On this day, 4 years ago, Michael and I woke up extra early to drive 40 minutes to Nicklaus Children’s Hospital for a bone marrow biopsy. We listened to Jack Johnson in the car.  It was too early for Michael’s rap and alternative playlist. As I type those words, I literally laugh at my ignorance. We arrived for the biopsy without even considering that cancer was a possibility. I look back on how unsuspecting we were. How little we knew then, how much we know now. Michael had been tired for over a month. An off-and-on fever. Night sweats. I thought he had Covid. Or maybe he was anemic. We joke about my vegan tendencies. To my naive mind, “bone marrow biopsy” simply meant a more comprehensive blood test. We would find out the right vitamins, protein and/or iron Michael was missing. Maybe we would figure out if a virus or bacteria was attacking him. His pediatrician was homeopathic, I was sure we would find a simple solution with diet and natural remedies to get him back to his healthy, athletic, energetic (so like his mama!) self. Even though we had been through cancer with my husband only 4 years before, the symptoms were so different. There were no red flags, no familiar warning signs that made me think Mchael was actually SICK sick. Life threatening kind of sick. And Michael was so young. 19. Too young to even think about mortality and a stage 4 diagnosis. Now I look back with the 20/20 vision of hindsight. Today I have 4 years of deep experience and knowledge diving into oncology head first. Yes, of course, the signs were there. But you don’t know what you don’t know.  

It is so funny how the mind works. I remember every ingredient of every meal I made for my husband his last 10 days at home before he died. And I remember every detail of July 14th, 2020. As if it were yesterday. Even though, in another way, it feels like a hundred years ago. A lifetime ago. We have time stamps in our memories and July 14th is tattooed with permanent ink. Again, hindsight IS 20/20. I can see that those last few days leading up to the 7/14 biopsy Michael was more than tired. He was exhausted. Wiped out. The off-and-on fevers were getting more regular and more intense. His appetite was waning and he had lost weight. How could I have been so blind? But, honestly, I don’t think suspecting cancer would have changed the outcome. I do believe the universe connected us with the right doctor at the right hospital at the right time. July 14 was the day we were given the devastating news that Michael had blood cancer. It was the day the world stopped. Flipped upside down. The rest of the world kept going, we got off. But then we had to wait 3 more weeks for the precise diagnosis of hepatosplenic t cell lymphoma. 3 weeks that I can barely recall. Except that in those 3 weeks Michael was getting sicker and sicker. But again, I think fate landed us at Nicklaus at the precise moment to keep him alive until he WAS diagnosed. And could be treated. Just as fate brought you all into my life, our lives, this story, to love and support us when we could have been so lost and alone. This IS a love story, in fact. I am filled with so much emotion as I come to terms with you all being there for us these last 4 years and counting. My heart explodes with so much gratitude and so much love.

Thank you my forever family.

Four years. 

This summer, June and July of 2024 have continued to challenge our positive attitudes and our optimistic mindsets. Maybe more Michael than this mama. He grapples daily with the idea of CHRONIC GVHD. Meaning: Long term. Continuous. Enduring. Persistent. Never ending. I know I have said it before, but coming to terms with the “long-term” part is still tough. Oh don’t get me wrong, we are so grateful he is alive. We have so much perspective. More than most people have in a lifetime. Three perfectly perfect humans we know died this month. 2 of them were under 10 years old, one was 27. All cancer, of course. The club that we belong to without having had to pass any prerequisites. Cancer is certainly politically correct in that it is completely non-discriminatory. The 27 year old, Weston, was near and dear to our hearts because he and Michael shared a similar story. Both diagnosed at 19 as freshmen in college. Healthy. Athletic. Checking all the right boxes for great mindset and clean living. Both had bone marrow transplants that resulted in chronic GVHD. Weston lived in California but we had met in person, we had hugged, laughed, had deep conversations on the phone, and he had been one of the most interesting, open, vulnerable, surprising, enlightened guests on our podcast. We were connected on multiple levels. Every time someone we know leaves their earthly body it hurts. But this one hit hard. Every single day is a gift, not a guarantee. Weston had learned the hard way to live by that standard. He reminded us, too. So now we practice with even more determination. We still have to work at it and I remind Michael that it’s a daily practice, not a destination. Like working out. Meditating. Brushing your teeth. We thank the universe for Weston and our friendship. But if Weston can succumb, what about Mchael? Or any of us.

Michael’s GVHD is still active, but remaining stable. Again, not better, not worse. Continuing the endless treatments. At one point I think we felt like the GVHD was a holding pattern. The cancer, the BMT, and the never ending complications put life on hold. An in-between state. But now I realize this IS life. Our life. Life is now, even if this is not the life we thought we wanted. As most of you know, Michael also has AVN, avascular necrosis. A deal with the devil, if you will. Steroids saved his life but destroyed his bones. For now, the knees and elbows have it the worst. January 30th of 2024 he had a total knee replacement, but recovery has not been as smooth as we hoped. Last week Michael had to undergo another procedure on the same knee. The orthopedic surgeon is an angel with the biggest smile and best energy one could hope for from a brilliant doctor. But he did not quite warn us of the challenges involved in this knee manipulation, biopsy and aspiration. Michael’s knee is almost as swollen and painful as post surgery 5 months ago. Not the same surgical incisions to heal externally, but inside a lot is going on. The GVHD just makes everything a little slower to heal. So, he gets pushed down again, but as usual, standing back up. Slowly, painfully, with his mama holding his hand, but not staying knocked down. He started a new medication for his appetite, hoping to gain a few pounds, hoping to gain a little strength. So far, no side effects, and maybe getting a few more valuable calories in there. He has been extremely exhausted, it is hard not to think about the early days of cancer, but the labs point to GVHD, not relapse of cancer. I try to breathe. Maybe the healing of the knee is just taking all of his body’s energy. 

We are more motivated than ever to post social media content that is deep and valuable. I think most of the time, the videos are for us. To remind us of our lessons. And sharing those intimate moments brings us closer to ALL the humans out there who are searching to be better, do better, make the world better. My goal in life. Purpose. It is why we are here and why we CAN move forward. Thank you for being you. For being there for us. We love you. I love you.

Dear beautiful, steadfast, unwavering, lovely friends and family,

Today is July 14th, 2024. I am writing this heartfelt letter to you, this monthly, intimate update that has become so integral to my existence, my life line to you, to the other world, the world outside of the hospital and oncology, cancer and complications, while celebrating an anniversary of sorts. On this day, 4 years ago, Michael and I woke up extra early to drive 40 minutes to Nicklaus Children’s Hospital for a bone marrow biopsy. We listened to Jack Johnson in the car.  It was too early for Michael’s rap and alternative playlist. As I type those words, I literally laugh at my ignorance. We arrived for the biopsy without even considering that cancer was a possibility. I look back on how unsuspecting we were. How little we knew then, how much we know now. Michael had been tired for over a month. An off-and-on fever. Night sweats. I thought he had Covid. Or maybe he was anemic. We joke about my vegan tendencies. To my naive mind, “bone marrow biopsy” simply meant a more comprehensive blood test. We would find out the right vitamins, protein and/or iron Michael was missing. Maybe we would figure out if a virus or bacteria was attacking him. His pediatrician was homeopathic, I was sure we would find a simple solution with diet and natural remedies to get him back to his healthy, athletic, energetic (so like his mama!) self. Even though we had been through cancer with my husband only 4 years before, the symptoms were so different. There were no red flags, no familiar warning signs that made me think Mchael was actually SICK sick. Life threatening kind of sick. And Michael was so young. 19. Too young to even think about mortality and a stage 4 diagnosis. Now I look back with the 20/20 vision of hindsight. Today I have 4 years of deep experience and knowledge diving into oncology head first. Yes, of course, the signs were there. But you don’t know what you don’t know.  

It is so funny how the mind works. I remember every ingredient of every meal I made for my husband his last 10 days at home before he died. And I remember every detail of July 14th, 2020. As if it were yesterday. Even though, in another way, it feels like a hundred years ago. A lifetime ago. We have time stamps in our memories and July 14th is tattooed with permanent ink. Again, hindsight IS 20/20. I can see that those last few days leading up to the 7/14 biopsy Michael was more than tired. He was exhausted. Wiped out. The off-and-on fevers were getting more regular and more intense. His appetite was waning and he had lost weight. How could I have been so blind? But, honestly, I don’t think suspecting cancer would have changed the outcome. I do believe the universe connected us with the right doctor at the right hospital at the right time. July 14 was the day we were given the devastating news that Michael had blood cancer. It was the day the world stopped. Flipped upside down. The rest of the world kept going, we got off. But then we had to wait 3 more weeks for the precise diagnosis of hepatosplenic t cell lymphoma. 3 weeks that I can barely recall. Except that in those 3 weeks Michael was getting sicker and sicker. But again, I think fate landed us at Nicklaus at the precise moment to keep him alive until he WAS diagnosed. And could be treated. Just as fate brought you all into my life, our lives, this story, to love and support us when we could have been so lost and alone. This IS a love story, in fact. I am filled with so much emotion as I come to terms with you all being there for us these last 4 years and counting. My heart explodes with so much gratitude and so much love.

Thank you my forever family.

Four years. 

This summer, June and July of 2024 have continued to challenge our positive attitudes and our optimistic mindsets. Maybe more Michael than this mama. He grapples daily with the idea of CHRONIC GVHD. Meaning: Long term. Continuous. Enduring. Persistent. Never ending. I know I have said it before, but coming to terms with the “long-term” part is still tough. Oh don’t get me wrong, we are so grateful he is alive. We have so much perspective. More than most people have in a lifetime. Three perfectly perfect humans we know died this month. 2 of them were under 10 years old, one was 27. All cancer, of course. The club that we belong to without having had to pass any prerequisites. Cancer is certainly politically correct in that it is completely non-discriminatory. The 27 year old, Weston, was near and dear to our hearts because he and Michael shared a similar story. Both diagnosed at 19 as freshmen in college. Healthy. Athletic. Checking all the right boxes for great mindset and clean living. Both had bone marrow transplants that resulted in chronic GVHD. Weston lived in California but we had met in person, we had hugged, laughed, had deep conversations on the phone, and he had been one of the most interesting, open, vulnerable, surprising, enlightened guests on our podcast. We were connected on multiple levels. Every time someone we know leaves their earthly body it hurts. But this one hit hard. Every single day is a gift, not a guarantee. Weston had learned the hard way to live by that standard. He reminded us, too. So now we practice with even more determination. We still have to work at it and I remind Michael that it’s a daily practice, not a destination. Like working out. Meditating. Brushing your teeth. We thank the universe for Weston and our friendship. But if Weston can succumb, what about Mchael? Or any of us.

Michael’s GVHD is still active, but remaining stable. Again, not better, not worse. Continuing the endless treatments. At one point I think we felt like the GVHD was a holding pattern. The cancer, the BMT, and the never ending complications put life on hold. An in-between state. But now I realize this IS life. Our life. Life is now, even if this is not the life we thought we wanted. As most of you know, Michael also has AVN, avascular necrosis. A deal with the devil, if you will. Steroids saved his life but destroyed his bones. For now, the knees and elbows have it the worst. January 30th of 2024 he had a total knee replacement, but recovery has not been as smooth as we hoped. Last week Michael had to undergo another procedure on the same knee. The orthopedic surgeon is an angel with the biggest smile and best energy one could hope for from a brilliant doctor. But he did not quite warn us of the challenges involved in this knee manipulation, biopsy and aspiration. Michael’s knee is almost as swollen and painful as post surgery 5 months ago. Not the same surgical incisions to heal externally, but inside a lot is going on. The GVHD just makes everything a little slower to heal. So, he gets pushed down again, but as usual, standing back up. Slowly, painfully, with his mama holding his hand, but not staying knocked down. He started a new medication for his appetite, hoping to gain a few pounds, hoping to gain a little strength. So far, no side effects, and maybe getting a few more valuable calories in there. He has been extremely exhausted, it is hard not to think about the early days of cancer, but the labs point to GVHD, not relapse of cancer. I try to breathe. Maybe the healing of the knee is just taking all of his body’s energy. 

We are more motivated than ever to post social media content that is deep and valuable. I think most of the time, the videos are for us. To remind us of our lessons. And sharing those intimate moments brings us closer to ALL the humans out there who are searching to be better, do better, make the world better. My goal in life. Purpose. It is why we are here and why we CAN move forward. Thank you for being you. For being there for us. We love you. I love you.