Easy to Get Confused After Four Re-birthdays
It’s probably unusual for someone to wake up and wonder if it’s their birthday, but that’s what happened to me the other day. Specifically, through the fog of sleep, I thought on September 18th that it may or may not be my birthday.
My first re-birthday, 15 years ago, that is.
Remembering four re-birthdays
When you’ve had multiple stem cell transplants, that kind of thing can happen. I wrote all four re-birthday dates down in a little blue notebook which sadly disappeared. I could ask my nurse practitioner, or I could look it up on my Patient Gateway account. I might do it, but so far I haven’t. At this point, it doesn’t matter except as a curiosity. I know it was somewhere around that date at least.
I mentioned it to my daughter, and she said, “Too bad it didn’t work,” or something like that.
Well, my only autologous transplant (I had three allogenic) worked for three-and-a-half years, so it sorta kinda worked.
I explained to my daughter that my doctor told me why he did the “auto” and not the “allo” with its more curative potential. For those autologous transplants that do stick and lead to lasting remission, you don’t have the side effects that you get when you have someone else’s stem cells in your body. Specifically, you don’t get graft-versus-host disease (GVHD), which occurs when immune cells from the donor (the graft) attack healthy cells in the recipient’s body (the host).
I’m grateful to be here, but still, I have to say that it’s been a real pain to deal with GVHD of the skin and gut.
I was just talking to another cancer survivor about our perception that worrying about relapse, or for that matter, any bad thing, will keep it away. Rationally, of course, we know that this is not based in reality. Some would call this “magical thinking.”
An example was how I told my son about a skin cancer biopsy result that I was awaiting. “I’m not worried, but maybe I should be,” I said. “Why should you worry?” he asked. Because some part of me thinks that worry has some kind of power. Well if you use my experience between the time of my first re-birthday and my first relapse, you would have to say that worry was not very effective. I worried that I would relapse, but that did not stop it from happening.
My doctor had told me that after two years I could break out the champagne because at that point the leukemia was very unlikely to return. But, in another example of magical thinking, I decided not to show hubris and tempt the fates, so I had coffee with friends instead. But as noted above, I relapsed anyway.
He also said that after five years, you can say you’re cured. When five years arrived after my fourth transplant – an allogenic one – I went out and celebrated with my children. We had a birthday cake with a number five candle. Still, to this day, I never say I’m cured. I might say, “THEY say I’m cured,” or, what you often hear after five years, “You are no more likely to get leukemia than the general population.”
Nobody wants to tempt fate.
Have you used CAR T therapy as a treatment for blood cancer?