Dear folks out there in Cancerbitchlandia,
I'm in a rowing group for breast cancer survivors, so it's selective, as in you must have that one basic criterion, but it's unselective because once you show up they can't kick you out for your athletic performance or lack of. I have recounted some of my problems with polycythemia vera. It's especially annoying when I'm in a warm place and I'm exercising, so my blood is running around and stirring up the histamine (or something along those lines) and I get very hot and very itchy or sometimes feel like someone is sticking pins in me:
Until very recently I would get really upset because I didn't stop before this happened, and when it happened I felt so embarrassed and angry and alien. But. I decided to email ROW members. This is what I wrote:
Dear everyone,
Some of you know about my weird blood disease from reading my rant on Facebook. I thought since it affects how I am at practice, I should let y'all know about it and me.
I have polycythemia vera, which means I have too many red blood cells and platelets. It is caused by a gene mutation called Jak2.
I take oral chemo, which doesn't cause side effects (so far). Other people get enlarged spleens from the disease, which is a chronic cancer. Luckily, my spleen is a good size, but I have severe itching. In fact, itching after a shower is one of the symptoms that people notice before they're diagnosed. The disease causes histamine to go crazy. Thus if I had no treatment at all, I would itch/feel like someone was pricking me with pins/ constantly.
To combat the itch, I take a 24-hour antihistamine once a day, and generic Atarax from 3 to 6 times a day. I drink coffee (which I like) to keep awake. When it's really bad, I take Emend, off-label use. I try not to take it much because it costs $7/pill and insurance pays for a limited supply, and no one's studied the long term use of it. In fact, it is not intended for long term use. I also get phototherapy two to three times a week. In winter I'm usually good. The problem is that whenever I'm warm I start itching more. So if I'm on the erg and it's warm and I'm warm I might have to slow down before I get so hot that I start itching uncontrollably. I've always been very allergic, so for 50 years I would respond to mold and pollen by getting asthma. (I take a bunch of meds for that, too.) But with polycythemia vera, my skin reacts to allergens, which means I itch and itch. And get asthma/stuffy nose as well. PV also causes night sweats and day sweats, so that it compounds hot flashes.
So if you see me hugging the air conditioner, or leaving a place...or slowing down when everyone else is pounding away at the ergs, it's because of polycythemia vera.
There's one new drug that I might start, but it's for extreme cases.
It's all disturbing and confusing, though I've gotten to the point mostly where I no longer freak out with the severe itching, or start weeping and feeling terribly sorry for myself and alienated from everyone and the world at large.
So that's that.
