Yesterday's appointment was incredibly frustrating. It's like I waited all of this time to get in to see the Wizard, expecting him to send me back to Kansas immediately. Instead, I find out I have to go mess around fetching the broomstick of the Wicked Witch of the West.
Jay and I expected to walk in there and find everything all set up with a plan and a schedule in place. I'm usually not that anal about schedules, but I worry about finding care for WCB while I have to be off being a cancer patient. Instead, we found out that Dr. GPO has been out of town, so he didn't get a chance to talk with Dr. H or read her latest report on me. Fortunately, I'd brought along my own copy of the report, which went into a lot of detail about all the drugs I'm supposed to take. Dr. GPO said he agreed with the plan and got everything rolling, and sent in a nurse who does all of the dealings with the drug company and the insurance company, and I had to fill out a bunch of paperwork. We were at the Cancer Center for almost three hours.
You see, no doctor can just whip out a prescription for Revlimid on the spot. For about 10 years, a common treatment for myeloma has been Thalidomide -- the same drug that caused horrendous birth defects when it was given to pregnant women back in the '60s. Revlimid is like a new version of Thalidomide -- it's even more effective against myeloma without a lot of the side effects, but it is still just as dangerous to unborn babies. Dr. GPO called it "Son of Thalidomide." If you go to the Revlimid web site, you'll mostly see a lot of warnings, like this:
1. Do not take REVLIMID if you are pregnant or plan to become pregnant.
2. If you become pregnant while taking REVLIMID, stop taking it right away and call your healthcare provider.
3. If you even think the word "pregnant" while taking REVLIMID, stop thinking it right away, and try to think of a completely non-pregnancy-related word, such as "kumquat."
4. If you make eye contact with a pregnant woman while taking REVLIMID, flush woman's eyes with holy water and call your priest.
Because of all of this, all patients taking Revlimid have to be enrolled in a special program through the drug company before they can get a prescription. I had to fill out a big stack of paperwork, promising about 50 different times that I'm not about to get pregnant, that I won't share my medication with anyone, and that I won't donate blood.
I also may have signed something promising that I won't become a sperm donor, but I'm not sure.
Then I had to fill out another stack of forms for the insurance company. The nurse explained that the drug is so expensive that often insurance companies won't cover all of it, and we could get stuck with a bill for around $900 a month and would need to apply for financial assistance. I had to fill out all those financial forms, just in case.
I really don't think a $900 bill going to happen. Really. According to our insurance company's web site, we should be totally covered. But it's another thing to worry about until we know for sure.
We're supposed to hear back from the nurse early in the week to find out about all the insurance stuff, and then we proceed from there. I really have no idea when I have to go back in or exactly when I'll start on the drugs. I guess we will wait and see.
After the appointment, Jay bought me a strawberry margarita. I think I earned it.