Bloody Blood Cancer Bitch: Jakafi hath arrived/Cancer Bitch hath, too, in Tampa.

My hematologist filled out the forms and Walgreens filled out the forms and on Monday L rode his bike to Fancy Hospital Walgreens and picked up the goods. Today is day 2 on Jakafi and I just arrived, Jakafi in hand, in Tampa. I'm doing a craft seminar and reading today at 4pm, Reeves Theater in Vaughn Center, University of Tampa, for the low-rez MFA program. Free to the public.


OMG OMG. There is a goddess who watches over people with rare chronic blood cancers. Co-pay for a month's worth of Jakafi is two sawbucks, or one Andrew "I killed Native Americans" Jackson, or 2000 pennies. Quite doable and $10,080 less than I thought it would be!
Trail of Tears, brought to you by the US government/Andrew Jackson

Sticker shock shock shock

Jakafi costs

$11,000 for a month's supply! My insurance company is supposed to call me. We shall see.

Jakafi, will you save me?

Today L went w/ me to the hematologist's because I wanted him to be around for the momentous decision. We recounted my itchiness and the doctor said she thought Jakafi would help. It's usually prescribed for people with polycythemia vera who have enlarged spleens. My spleen is a very nice size, unobtrusive. But it is supposed to work on itches. Or pruritus, its proper name. Sounds more serious. The pruritis has made me cautious, given me more of an excuse not to exercise, since sometimes exercise in warm weather can lead to almost unbearable pruritis. The etymology of the word is not very interesting at first--it comes from the Latin pruritus, past participle of prurire "to itch"--but then you can go to prurient, which is related, and it gets lots more interesting. Prurient originally meant "having an itching desire" (1650s), and then became more louche--especially "lascivious, lewd," (1746),  The Oxford English Dictionary tells us that pruritus means "Itching of the skin or other surface. Also fig.: a strong desire or craving." As in the line surely you've heard at Whole Foods, "I sure have a pruritus for that spirulina!" Or the anonymous phone call I got recently: "I've got a pruritus for you that just won't quit." I almost responded, "Then let him out!" the way I do when they ask if I've got Prince Albert in a can. Glad I didn't.

The Melancholic, according to the system of four humors:
  • Humor: Black Bile
  • Element: Earth
  • Season: Winter
  • Age: Old Age
  • Qualities: Cold & Dry
  • Organ: Spleen
  • Planet: Saturn

 by Durer


Bloody, Bloody Cancer Bitch Comes Out

...which is not exactly the topic at hand, but somewhere in the ballpark...closer than Bloody Bloody Andrew Jackson...

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.