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.
Michael and Mom Talk Cancer 