Day 111

I had another clinic visit today and there wasn’t much change. My blood counts were as follows:

WBC – 3.7
Hgb – 10.7
Plt – 198

They were pretty happy with my WBC and it looks like I’ll be taking Neupogen once a week to keep it boosted. The platelet count is fine and the hemoglobin is a little low, but since my energy level seems to be pretty good, the doctor said he wasn’t going to try Procrit to boost yet as he was considering. When I got home, the clinic called and said I needed to come back in tomorrow to get a shot of some other hemoglobin booster, but when they remembered that I had the Neupogen at home already, they decided I didn’t need to come in after all.

I got some topical ointment for the GvHD on my face and I discovered it contains tacrolimus, which is the same drug as my immune suppressant that I take every day. Of course, when I picked up the prescription, my co-pay turned out to be $35! Ouch. Apparently tacrolimus is very expensive and for health insurers, falls into that third tier (above the name-brand tier).

I asked the doctor about the timing of weaning me off the immune suppressant or anti-rejection drug (called tacrolimus or the brand name of Prograf), partly because part of me feels like getting on with things so I can get back to a more normal life. I asked if he was waiting until he saw something in my blood labs or something. He said no, he was just waiting because he and others around the country who do bone marrow transplants have found that if you rush things, the GvHD can be really nasty. They’re still learning how different mini-transplants are from the older full transplants where the GvHD seemed to kick in much quicker. If it means less severe GvHD, I’m willing to wait. As a result, I’m not expecting much to change between now and mid January, which is when he says he is thinking about starting the weaning process.

On the positive side, I did eat some pizza from a restaurant last weekend! I know it doesn’t sound exciting, but it was a real treat for me (Shrimp Bella Venezia).

I’m also working from home (software development) more these days, and it feels good.

On the more negative side, I’m really noticing what they call “chemo brain” wherein my brain really doesn’t seem to work as well (don’t tell the people at work). The number of things (like names) that I forget these days is astounding. There are other symptoms which can be quite discouraging at times, but they tell me it’s not a permanent condition. I sure hope that’s true.

Love,
Justin