October 27, 2024, Four Years Post Transplant: Learning to Accept Gifts and Take Nothing for Granted

October, 2024 update 

To my dear, beautiful, lovely family and friends,

Sunday, October 27th, 2024 marked exactly 4 years to the day since Michael was given his life-saving bone marrow transplant. The word “given” sounds so tame, when I think of the 6-week plus hospital admission full of ups and downs, moments of darkness and despair, hope and fear, wondering whether or not Michael and I would be leaving the hospital and going home together. “Gifts” are usually met with a gentler, more pleasant welcome. A less threatening reaction. But it was a gift, from an anonymous stranger, who was born across the ocean, spoke a different language, lived in such a contrasting culture, and seemed to have so little in common with my Michael. Except for their stem cells. Which were so perfectly matched. And it truly was the gift of life. Michael would most certainly not be here without that selfless, generous, huge-hearted donation. We are forever grateful and indebted to this man we have never met. Sometimes gifts come in pretty boxes wrapped in shiny paper adorned with big bows, and sometimes they come in mundane, clear bags that look like ziplocs, hung on stark IV poles, dangling next to dozens of other bags of medications being infused simultaneously, trying to ward off infections, pain, and too many harsh reactions to name….. 

Four years later accepting the gift is still somehow challenging for Michael’s body: GVHD. You all know that acronym if you have been following this story. What started out as acute has become chronic graft versus host disease. Yet even so, the new stem cells were life saving. ARE life-saving. Life-changing. DNA altering. Soul transforming. Path pivoting. A future we could have never imagined, yet we embrace wholeheartedly. I cannot help but to look back on that day of transplant, on that period of time, and as much as in our self-aware culture we know better than to dwell on the past, sometimes we cannot help but to wander there and remember. Ruminate. Reflect. Not to wallow or get stuck in the days that have passed and we cannot change, but to look again, with the lens that has taken 4 years to create. 4 years. It feels like 40, we have received so many lifetimes of experience. 

Somehow I remember every detail of preparing and packing for our long stay that would come with Michael’s bone marrow transplant. In my previous life, pre-cancer, a month and a half hospital admission was unheard of. Just going to the ER with my kids felt like a disruption of life. An overnight stay in the hospital was unimaginable, a scary, foreign thought. When Michael was admitted the first time July 14, 2020, the day our lives were no longer ours, because somehow my Michael had cancer, those initial 7 days and 7 nights we stayed in the hospital seemed an eternity. Of course, it was followed by many more week-long admissions for chemo, radiation, fevers, tests leading up to the transplant. But how would we survive living in the isolated bubble of the bone marrow transplant unit for multiple weeks? Maybe a month? Maybe more? Little did we know that the next 2 years of GVHD and complications stemming from the BMT would land us back in the hospital for countless more admissions of days, weeks, and even months at a time. One thing we have learned over and over and over (and over) again, is the complexity of cancer treatment. Every treatment comes with a deal with the devil. Accepting one advantage to be faced with a brand new complication. Weighing the benefits vs. risks. And so, as I have said too many times, oncology seems to be more of an art, with a touch of a circus balancing tightrope act. Without a net. And the tolls are not only physical, they are emotional. Spiritual. Mental. For patient and caregiver alike. But here we are. Alive. 4 years later. What greater gift can there be?

We do not complain or mourn the death of our past dreams from our past life, but we try to come to peaceful terms with this new life we have been granted. Given. A constant reminder NOT to take anything for granted. Life is not a guarantee. Michael has been at the border of life and death multiple times. For reasons unbeknownst to us, he has been held back from crossing. We do not question it. Well, we try not to. We know too many others who have not survived and our human brains do not understand the why. Why them and not Michael? Why Michael and not me? Why our family and not another? I smile and say “there is no why”. As our dear friend Weston Lord stated on our podcast just months before he passed away from a similar blood cancer, it is above our paygrade to answer that question. So, we don’t try. But even if there is no why, we can make purpose. Try to be better. To help the next person. That is what keeps us going. Keeps us hopeful. Continues to feed love into our hearts. And we know that love really has been our savior. Live now. Love now. 

We continue to advocate, speak on humble stages about our story, dig deep on our podcast and connect with as many as we can, as genuinely as possible, on social media. I believe with all my heart that the more we give, the more we have to give. The more we share kindness, the more kindness we have to share. Love, too. Of course love.

Michael is back at the ocean between treatments, and back at the gym. These are the two huge highlights and miracles this past month. I used to say we were living a kind of chacha. A forward and back dance. Lately I think it is more like a whole new style of dance and a brand new piece of choreography. We are learning new steps to getting stronger, and an altered way of standing and dancing on the surfboard. But he is standing. We are dancing. For Michael, that is inherent to being alive, I think. Not like before, not trying to bounce back, but move forward and incorporate his love of the ocean into this new life.

We continue to go to the hospital multiple times a week. PT for Michael’s knee and necrosis in his other joints (AVN). A steady flow of follow ups with specialists. The pulmonologist who keeps a close eye on his decreased lung function. The ENT for mouth cancers which often manifest along with chronic mouth GVHD. Orthopedic doctors who follow his avascular necrosis. Dermatologists who keep watch over his discolored skin. The GVHD on his skin keeps it thin and fragile and our trips to the beach are early morning or late, LATE afternoon. Sun is public enemy number 1. The GI GVHD is simply part of life. He lives on a bland diet to most, but it keeps Michael’s weight stable (although always trying to gain a few pounds!) and while his diet may seem a little boring, it works. He CAN eat. Another gift most of us take for granted.

ECP continues, although we are beginning the process of weaning him off of the lengthy blood treatment. After a certain time it loses effect. Michael has probably passed that time. There is talk from his thoughtful, genius GVHD doctor of a new immunotherapy for graft versus host disease that was just approved. We hope it will be available in early 2025. For now, it is only available as a clinical trial, coupled with twice weekly ECP treatments. Every week. That would keep Michael out of the ocean for way too many months and now that he has a taste for the sea, getting his feet wet, paddling on a surfboard again, we are going to wait. We hope he can get the new immunotherapy in January. Michael’s numbers are stable. They bobble up and down, never quite in the range we want, that his doctor is looking for, but Michael’s body seems to have adjusted to those high liver enzymes, low hemoglobin, and suppressed immunity. 

4 years. Alive. Full of love, hope, lessons, perspective and more gratitude than I could have imagined for this gift of life. I love you all forever. We are here because of YOU.