It’s been 100 days since I received an infusion of over 8 million of my own stem cells in October. Even though it was my second stem cell transplant in less than six months, this is uncharted territory for me.
My recovery from the first transplant this summer was interrupted around this time. My hair had begun growing back. I was starting to feel better. Then back to Iowa for round two.
I think about that a lot with so much political attention on the Hawkeye state these days. I imagined I was one of the political operatives for one of the candidates. Just when I thought I was done with Iowa I found myself back for another 30 days.
I was warned that my recovery might be slower the second time around. Honestly, it’s hard to say. My weight is still down, but two bouts with intestinal infections helps explain that. Like the first time, my hair is growing back and I’m feeling stronger. I’m short of breath much of the time, but that could be worsened by the weekly Kyprolis infusions as Dr. Tricot continues to hammer my recently undetectable myeloma.
The significance of 100 days? For most transplant programs, it means no more mask, unless you’re flying on an airplane or spending time in a crowd. Some centers stop prescribing some prophylactic meds after day 100. A reader reminded me that most also allow eating raw veggies and salads now, too; things like kale and spinach. I’ve been consuming these (along with celery and carrots) washed in vinegar before jamming it all in the blender.
Those of you that have gone through the stem cell transplant process were most likely given a binder of information about BMT center policies and what to expect. Here’s what the guidebook from the University of Iowa Holden Comprehensive Cancer Center has to say about it:
You must wear your mask when you come to the hospital for clinic appointments. Also wear it when you are in crowds or dusty places. You will wear it until your immune system is stable. For Dr. Silverman (the outstanding director of the BMT unit) and Dr. Farooq patients, this is most often at least three months after your transplant. For Dr. Tricot and Dr. Abbi patients, this can be two years…
Two years? I’ve written about how conservative Dr. Tricot is.
The text goes on to remind patients that their doctors will be “watching their labs closely.” And there’s the rub. My white and absolute neutrophil counts (ANC) have been off the charts for a transplant patient since day 20. I’ve been in the normal range ever since.
I religiously wear my mask when I’m doing housework and “light yard work,” whatever that means. I’m not mowing the lawn yet, even though it needs it. Once every three weeks this time a year is often enough. Pattie can mow one more time. I figure I’ll wait until our spring takes hold to start mowing around March 1st.
Look, there are two sides to this. It’s great physical therapy to be active, up and working. And at some point, our immune system needs to be exposed to stuff in order to develop again.
Enough about that. Friday I had the pleasure of meeting a fellow patient, Nancy, for coffee at our new Starbucks. Nancy was recently diagnosed and is trying to decide whether to transplant now or wait. Visiting with me and my gaunt, muscle-less frame might give her pause. Nancy’s kidneys are involved, so its hard for me to give her advice. My take away message: Take your time, continue to research and do what feels right for you.
Nancy’s husband, Dave, took this picture of us on our way out:
Nice people. They offered to help out at the Beach Party. We have over 80 registered so far, so I get the feeling I’m going to need all the help I can get!
Feel good and keep smiling! Pat