A year ago today I had a stem cell transplant at Memorial Sloan Kettering in New York. I have multiple myeloma, an incurable but treatable blood cancer.
Studies reveal high levels of multiple myeloma indicators in 9/11 firefighters. No such numbers yet for disaster-zone civilians, but some WTC relief programs consider it a covered condition. I live 12 blocks north of the border.
Diagnosed in Jan 2018, I did well on the standard treatment: Velcade shots, a steroid, and Revlimid pills whose post-insurance cost stunned me. My cancer numbers plunged. I went on to the transplant to improve my chances for longer remission, though it has some risks.
Unlike donor transplant, autologous SCT uses patient stem cells. In August mine were harvested by a machine that drew blood from one arm, sucked stem cells out, then returned remaining blood to my other arm, weirdly reminiscent of a scene in my novel The Only Ones.
SCT requires a 2½ week hospital stay and is followed by 100 immune-suppressed days eating restricted, cautiously prepared foods in a hygienic environment. We spent weeks cleaning our hygienically challenged apartment and researching cautious but easy meals.
In the hospital a port was surgically inserted for IV traffic--meds in, bloodwork out. That night a massive dose of chemo was painlessly infused through it. My thawed stem cells followed two days later while I dozed in my state-of-the-art bed. In SCT lingo that is Day zero.
The whole ward was state-of-the-art. Spacious one-patient rooms opened on a cheerful hall that circled the nursing station. I had a view of trees. The staff were skilled, respectful, and friendly. Medicare and supplemental insurance covered every dime!
The chemo does a number on remaining cancer but also destroys many useful blood cells, leaving the body immune-compromised, vulnerable. Like golden retrievers, stem cells seem to know where they are needed. Immature & undifferentiated, they replace the lost cells, cancer free.
When the blood cell numbers bottom out, some patients feel totally wiped out. I was neither exhausted nor even truly nauseous though food revolted me. I could hardly stand to read the hospital menu.
Staff & visitors wore masks & gloves in my room, as did patients when we took exercise walks with IV carts following us everywhere. Holly Fairbanks, a dancer undergoing bone marrow transplant for leukemia in 2012 made up this Transplant Dance for hers.
The only time I cried was when my platelet level dropped so low I needed a transfusion. I had my husband play me "Transfusion" by Nervous Norvus.
The only time my daughter cried was when I lost my hair. It was falling out in clumps, so I had the rest buzzed off. To me that haircut was empowering. At least I could control what hair was left. Then that fell out.
Not really the headscarf type, I experimented with caps at home but was more comfortable, physically and psychologically, bareheaded and bald. From the start, I've tried to be open and unembarrassed about my illness. That's why I'm writing this.
By the time I left the hospital, my blood numbers were nearly back to normal. As before, I was less exhausted than others I'd compared notes with. I was thrilled to do my own cooking, choose my own schedule, sleep with my husband in my own bed.
But I soon found the next part harder than the hospital. Friends helped with meals and errands but I felt trapped and useless. I never got used to going out in mask and gloves. The food thing bugged me. I had so much trouble writing I stopped trying.
I thought all that would end with the 100 days, but when I got back out in the world I was shocked to discover how weak I'd become. I started an aggressive course of PT. I felt disoriented. That was harder to fix.
When the first crop of new hair came in, a friend patted my fuzzy head and, smiling, compared it to a baby chick. I think she was remembering her own chemo. That first crop is a big step in the long return to normal. A new normal.
Did I mention that my numbers came out great? Holding near zero--not bad for an incurable disease. I started maintenance Revlimid. I'll likely be on that or some other chemo for the rest of a life that could even be a long one. The pharmas even gave me a $ break. For now.
Driving down York Ave near MSK last month I passed the trees I once watched from my room and memories hit me. I felt almost nostalgic, as if it had been not an ordeal but a precious time when strangers gave me a great gift in a magical place to which I would never return.
Twitter, Sept. 28, 2019