Lucky
Sometimes I take for granted how “easy” my treatment was because it was so successful and because I had few choices to make. I was so sick that I had to start chemo immediately at Methodist, and I didn’t have time for a second opinion. When I got one, the docs at MSK said, “yeah, that’s fine. I mean WE would have given you different drugs, but those are standard and you’re in remission. It worked. Now, let’s talk transplant.” Once I met with my transplant doctor, there was a choice to make, but it seemed like the best course of action. Do a stem cell transplant and remove the T-cells or not? I got a second opinion from the head HemOnc guy from Methodist (the one who was mean at first but turned out to be very supportive after our initial, horrible encounter). He thought it was fine. That decision primarily hinged on if I was healthy enough to have that type of transplant (which was Dr. G.’s call), and if I was comfortable having all immunity wiped out (the T-cell depletion). I was because I didn’t want Graft vs. Host Disease.
Yes, the chemo wasn’t pleasant, but I only had four rounds of it, from the end of July through mid-October. Some people have chemo for YEARS.
Yes, the transplant did all sort of weird shit to my body. Examples include turning bright red for a few weeks, losing ALL of my hair (which has returned), not eating or drinking for two weeks, relying only on nutrition through an IV and the aftermath of trying to get my appetite back (only possible with three pills of Budesonide per day, a weird steroid) and the molting skin on my hands and feet. And that goddamn saliva from hell (which is known in leukemia land as “secretions”). Well I don’t even want to go into that again. It was worse than puking from chemo. It was worse than all of the rest of it, and it went on for way too long. But it’s gone now.
Still remaining? What is with the nails growing a layer under the old one and pushing the old layer up like a complete extra nail? Gross! Like really gross. My fingernails have all shed the icky extra layer, but are they very short and prone to chipping if I think too hard about something. Or use my hands. My toes are undergoing the transition now. My feet don’t feel the same since I lost that layer of skin, which now feels like it’s stretched too thin over my feet, resulting in a weird, tingly feeling all of the time.
My left index finger is still not right after Yusef ran into the nerve in my arm during PICC insertion number two. “It will be fine in a few hours,” he said, six months ago. I hope the damage isn’t permanent. The rest of my fingers got better, but this one is still numb yet tingly. I have heard that nerves are very slow to heal, so I haven’t given up hope.
But my hair is growing back, my taste buds are back. I am drinking wine again. I am not smoking. I am walking more and feeling stronger every day. My excretory system is nearly normal again too. You would be surprised how gratifying that is.
I take for granted most days that this is the only way it could have turned out. But then I have days when I realize it isn’t.
This morning I read an article on immunotherapy trials that saved some terminally ill leukemia patients. I read this with interest, wondering at first, as I always do, “I wonder why type of leukemia they had?” Today’s article was about ALL patients. Oh. I had ALL. Acute Lymphoblastic Leukemia. These are people who didn’t respond to the treatment that has served me so well. They didn’t respond to any of the different treatment options that have saved so many of us.
Then I have a little moment when I realize this could have been very different, and I could be writing a very different blog, if I were able to write at all. And then I’m grateful. And I feel very, very lucky.
So off I go to my bi-weekly appointment in two days, where I will try to be patient if I’m kept waiting by the people who ultimately saved my life and who are still trying to keep me healthy so I can accomplish some goals and enjoy my life and keep feeling lucky I’m still breathing. And writing run-on sentences on occasion.
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