I met with Dr. Juliet Penn yesterday, a local hematologist/oncologist at the Sansum Cancer Center. She said that my neutrophils and white blood cell count are still a little low, but they seem to be recovering appropriately. I no longer need to wear a facemask when I go out in public, and I can return to concert photography by the end of the month.
She stressed that I still need to be careful, and I should be washing my hands very frequently. I still need to avoid getting sick, and if my temperature rises over 100.5°F (38°C), I should go straight to the emergency room. That would be a sign of sepsis, a toxic response to an infection.
Dr. Penn will be seeing me every two weeks for the next couple of months to monitor my white blood cell count, and she will put in an order to my insurance company for rituximab. Dr. Ruíz prescribes us five more 100mg, 2-hour infusions of rituximab over the next year as a preventative measure for the post-procedural relapse that some people would otherwise have after a stem cell transplant.
The problem is that this medication is very expensive (in the USA, >$10K for one full-dose infusion of the name brand, Rituxan), so there’s a chance the request will be denied. (Each of my follow-up infusions are less than a half-dose.) In that case, I’ll have to travel back to Mexico for these, a pain in the ass, but worth the benefit. (At the time of my departure, I could have purchased all five follow-up doses at the Clínica Ruíz pharmacy for $2100, but nobody in the USA will infuse medication not distributed by a pharmacy.) Dr. Penn said they use a lot of it at the Cancer Center, so maybe a request coming from her office will go undenied.
In the meantime, my neurologist allowed me to increase my dose of carbapazimine (Tegretol) again. I’m up to 700mg/day now, which is a pretty big dose (six months ago, I started with 200mg/day). The dose has been inching up slowly ever since. The first couple of days at the new dose, there was no pain whatsoever, but I was comatose on the couch all day, pretty well unable to work. My body is starting to get used to acclimate, and I’m able to get some work done at the expense of bit of returning pain. I hope a dose does exist under which I both get pain relief and I can function normally. It seems I eventually end up at a higher dose without corresponding incremental pain relief. We’ll see. I’m trying not to need all four of my pain medications simultaneously.
I guess about once monthly, I’ll need to test decreasing the dosage to see if I can tolerate lower levels of medication. You never know, my body could actually heal post HSCT and repair the damage that’s responsible for the chronic pain. That was the driving reason I did the procedure in the first place.
I’m going to the grocery store on my own tomorrow. It will be nice to be back in a normal pubic environment.