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5 years ago today I went to a 7th doctor for severe fatigue, lightheadedness, body pain & bruising. At 12 PM a CBC was ordered. The lab was a block away. I tried to walk. I quickly realized I couldn't. I drove a block. By 8 we had a diagnosis: acute myeloid leukemia. Thread:
I mistakenly thought I would either die or get better. I had no idea that there exists a world between: intense physical, emotional, financial suffering. It became obvious very quickly that I was not responding to treatment. We soon found out I had a rare subtype: Ph+ AML.
At the time, the existence of Ph+ AML was disputed. This would have been hilarious if I was not worried about dying. I held my parents' hands as the 3 of us planned my funeral. We read clinical trials with 3, 5, 10 patients. Most had 1-2 survivors. We picked one.
People told me I would survive because I was "strong." This infuriated me. Having no control over my survival was the point of what was wrong. We found out I was in a miraculous remission after round 2, but we were not optimistic I would stay in remission. https://stanfordmag.org/contents/i-didn-t-beat-cancer-my-doctors-did
I had a bone marrow transplant from my brother on Sept. 24, 2015. I got grade 4 acute gut GVHD. I had to be taken off of two frontline immune suppressants because I had a seizure on one and mini stroke-like reactions to another. We struggled to find treatment.
Because of the GVHD, I was allowed nothing by mouth for 3 months. A central line was misplaced into my lungs instead of my heart. Liters of fluid poured into my chest. They thought I was anaphylaxing and I got 3 epis. Then they put intubated me and put lines everywhere in my body
That was year 1. After 1.5 years, I made it back to school. I watched my class graduate as I sobbed in the stands. Then I went to @sloan_kettering for a summer internship. I was optimistic. Unfortunately chronic GVHD quickly exploded in my skin, eyes, liver, and mouth.
By the end of year 2, I was in acute renal failure and on my 2nd leave of absence. I was itchy everywhere 24/7, my eyes burned and we worried I was permanently losing my vision, my skin was restricted to the point I couldn't breathe.
Meanwhile, people asked me how happy I was to be alive. They were elated. I had "beaten" cancer. I hoped every night when I went to sleep that I would not wake up.
By the end of year 3, I had miraculously recovered from yet another high-mortality complication. I returned to school for another year. The next summer, I broke my femur and found out my hip was necrotic. I spent 4 months waiting for surgery. I was trapped in my studio apt.
Meanwhile, I was on my 4th year of prednisone. I was exhausted. I was tired of feeling hideously ugly. People would tell me they could barely tell, which was beyond insulting to me. I realized I was not experiencing a delay of my young adulthood. This was a loss.
When I "graduated" last year, I wrote an article about my college exp. I don't know if I'll ever fully accept that I spent 19-24 worrying about surviving instead of exploring myself + the world. I can find my silver linings, but I resent being told to. https://www.stbaldricks.org/blog/post/brooke-survives-cancer-graduates-stanford-but-not-without-a-lifetimes-worth-of-challenges
It's been 5 years now. I finally got my college degree this week. It's a massive relief after years of juggling cancer treatment, 2 part time jobs, astronomical cancer bills, school, profs telling me to drop out, watching friends travel and make money and go to grad school.
But is it a celebration? Not really. It's...a day. Another day of 5 years of seemingly continuous SOMETHING. I finally recovered from my hip replacement around Feb 2020. I planned a trip to Japan, another to visit my sister in Canada, another to volunteer at a summer camp.
It. Is. All. Canceled. I have been quarantined before - about 2 years total. I have to do it again?? Will I spend my whole life coping with bad thing after bad thing??? Will my country ever see the cruelty of sending critically ill patients astronomical bills?
Anyway, donate to childhood cancer survivorship/GVHD research if you can/want. Support healthcare for all. When people get sick, don't try to pretend things are okay. Acknowledge that they are not. Here is a fund I started toward GVHD research: https://www.stbaldricks.org/hero-funds/brookesyasfund /end
