"Have you got anything without Spam?"

So, reading a bit about Rituxan, the new drug my rheumatologist wants me to start on, makes me feel like I'm in the Monty Python Spam skit. Except replace "Spam" with "death". Which is less funny.

As I make my way through various arthritis drugs, the side effects get nastier and nastier. I'm sort of scraping the bottom of the barrel, here; I've had this goddamned disease for what, eight or nine years now, and we're still trying to find something that helps. And so, we come to Rituxan.

"Some people who received rituximab experienced severe reactions to the medication. Some of these people died within 24 hours after they received a dose of rituximab. Most of these deaths happened after the first dose of rituximab," is the cheerful opener of the NIH page on this drug.

"Rituximab has caused severe skin reactions. These reactions have caused death," it adds (there's also dire warnings for people being treated for non-Hodgkins lymphoma, which luckily doesn't apply to me).

"Some people who received rituximab developed progressive multifocal leukoencephalopathy (PML; a rare infection of the brain that cannot be treated, prevented, or cured and that usually causes death or severe disability) during or after their treatment."

The page leaves me with this final admonishment:

"Talk to your doctor about the risks of using rituximab."

Ya think?

Except, of course, that there was no talking. I didn't read about it until after speaking to the doctor, or I would have certainly had some more questions.

"There's been more reactions to this medication than some others," the doctor told me. "So we're going to keep you at the OIC a while longer so we can keep an eye on you."

Which is great, except the people at the OIC are jackasses. Seriously. Every time I call to schedule an appointment, the idiot scheduler girl makes me repeat my history to her; what disease do I have? Who referred me? And this doctor, she is located where? And so on, despite the fact that they have these newfangled "computers" now, that show you patient information when you book them, and I've been dealing with the OIC for months. After I have negotiated the pit of stupidity which is the scheduler girl, I show up, on time, every time, only to have to wait an hour or more because they're always double-booked. Last time I was there, I spent the entire afternoon in a room they use for drawing blood and administering injections; all the actual treatment rooms (you know, the ones where they keep the oxygen, and trained nurses patrol in case you're having a tiny death-inducing reaction) were booked.

"You might consider scheduling your infusion on another day of the week," the random nurse who put the IV in suggested.

You might consider not double-booking your motherfucking facility, I thought. But I just smiled.

It's like flying Southwest. They should just give us plastic numbers and have us trample each other as we race to the available rooms.

Then, there's the lecturing. Because I've already had a reaction to a similar arthritis treatment, my doctor has ordered that they keep me a bit longer--a couple of hours, as opposed to the usual fifteen minutes. This makes the nurses at the OIC cranky. Which is perfectly understandable. After all, no one seems to actually read the doctor's orders before getting started and it comes to them as a complete surprise every single time I'm there (this makes me somewhat uneasy about the mystery solution they pump into my veins, but so far so good). Also, because of the aforementioned double-booking and scheduling-girl idiocy, they have more patients than they can handle. So I get lectured.

"You know, we don't normally keep people this long," nurse du jour will start out (apparently chemotherapy and other IV treatment is a very drive-through-y affair these days). And it goes from there.

"We never agreed to observe you this long," the last nurse groused at me. "That's just something your doctor decided."

Yes, well. Doctors and their crazy "deciding" and giving doctors' "orders". Truly a tool of The Man, always telling nurses what to do.

(Also? Ask me or any of the other patients here how much we care about inter-hospital politics or power struggles between your departments. Come on, I dare you.)

At any rate, this means that my observation period isn't really all it's cracked up to be. The first time I was there, a nurse with a chip on his shoulder the size of Texas simply evicted me from my room (ah, fancy room with oxygen tanks, how I miss you) and had me sit in the waiting room for several hours, with the IV line flopping off my arm (the actual IV drip got to stay in the treatment area). Lately, they've just been keeping me for a bit and then deciding I'm done. So at least I get to go home, where I can be not-observed while playing WoW instead of being not-observed in the hospital waiting room.

Anyway, this whole "Spam, Spam, Spam, death, Spam" thing is distressing. I know I spend a lot of time wishing I was dead, but still, I don't always wish I was dead. And if nothing else, I'm just a contrary person; I might want to die, sure, but I'll be damned if some lame-ass medication is going to be what does me in--when I die it's going to be on my terms, or by hilarious accident; not as a side effect. I'm also worried about the "severe disability" part; maybe it's my personal vanity (because I cherish my brain above most else) but the idea of not dying but having my brain turn to mush instead is terrifying.