“With AML eventual recurrence/relapse after chemotherapy is the most common outcome, so you are in good company.”
I haven’t written about myself much in the past few months, but one thing I often talk about when seeing friends are THE ODDS. I researched them constantly in the first few months of my diagnosis. I have folders full of study data, research on different treatments, experimental drug therapies, how cytogenetics impact those odds.
I don’t think about them every day anymore, but the odds aren’t good.
Even among people who go through a well-matched stem cell transplant for AML like me, 25% will die in the first year. By year five, 50% will be gone.
If one survives past year five, there’s a lot less data. But I will face a lifetime of health problems due to the rigorous mutilation of my body I endured to irradicate leukemic cells and make room for my transplanted immune system.
For the rest of my life, the risk of every possible health problem, from small to large, is multiplied many times over for me. I am broken.
But I am alive.
I do think about that a lot.
I’m in Hawaii right now for my brother’s wedding, and decided to stay on for another week for myself. It’s the farthest I’ve been since this ordeal began. I sometimes allow myself to feel guilty that I am enjoying this – A few days ago I swam in the ocean for the first time in almost a year, I accidentally stood on a giant sea turtle (he seemed ok with it), I smiled and laughed with my family, my girlfriend, my brother, my new sister. I’ve eaten a fresh papaya like every day here. Do I deserve this?
I am not sure about all that will come next. But I do know that I’ve stopped wasting time. I can’t help but feel the weight of its value each day. That awareness itself feels like a gift.
I have some time, and if I use it well, it will be more than enough.
The plan, for now:
Leave here soon and fly back East. Get checked up, rent an RV, and travel back to San Francisco with my girlfriend and the puppy. See things I’ve always wanted to see, go at my own pace, work along the way. Write and photograph.
I’ll stay in San Francisco for a while, with visits back to Boston to see my medical team. I’ll work with the Photojojo crew as much as I’m able. And when I’m allowed to travel internationally, I’ll visit places I’ve always wanted to live and will do my best not to feel guilty about it. I will use my time fully, all of it.
Amit continues to be an inspiration.