July, 2023, Three Years Later: There Is No Why

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