My counts were still low yesterday: WBC was 1, hematocrit was 24, and platelets were down at the “don’t ask, don’t tell level.” I know I could ask, but for some reason I get especially rattled by low platelet levels.
I got platelet and blood transfusions, with 50 mg. of Benadryl and a steroid to stave off a platelet reaction, and ended up staying the night at Diane and David’s, this time being rescued by David because Diane was out of town.
It also appears that on top of the already low white count, I may have a virus that is further suppressing my counts. I've had an on-and-off low-grade fever, but I feel OK. Yesterday they sent out some blood samples. So the primary suspect is the CMV, the Valcyte and now a new virus, and when the virus goes away my counts should come back.
There is also the possibility that some of my donor cells are going away, but the chimerism evaluating the percentage of donor cells is not back yet. If that happens, there are things that can be done. I am trying not to go there, although, as I have written before, I am spooked by the timing, since I was just about where I am now – six months out – when I lost the graft. I also know the unlikelihood of being hit by the same bus in the same spot. I need to keep believing it.
Over the weekend I was pretty OCD-ish in trying to figure out if my counts might be coming back. I checked and rechecked my black and blue marks and my Petechiae, the pinpoint dots that are a sign of low platelets. Were those new marks or old ones? I looked at a red mark on my gum and wondered if it was blood or if I had food stuck in my teeth. I started to go after it with my toothbrush, but I made myself stop. All I need is to cut my gum and start bleeding.
I am not a professional, but I imagine that this type of checking is a way of trying to feel in control of a situation that is not in our control. Kind of like when you are waiting for an e-mail from that special someone who hasn’t written or called in days. You try to distract yourself, but you can’t stop from clicking on your e-mail. Click, click, click…you could drive yourself crazy.
In times of anxious waiting, I know all the “tricks.” Change your focus. Take care of the things you can control, and give the rest up. Put on comfortable clothes. Do some gentle yoga. Stretch. Read. Take a walk. Breathe. Listen to music. Call someone. Think healing thoughts. Those are just some of the things I do; I'm sure other people have other things.
Still, when your mind works a certain way, it’s hard. It takes practice, and a nudge from self when my mind wanders off. Maybe some of us could form a chapter of ruminators anonymous.
10 hours ago