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…..