October 27, 2003
Spent from 11am to 4.45pm either waiting to get chemo or getting chemo.
Fucking Jefferson Hospital refuses to supply peg-Asparaginase (a slow-release form of the chemo I'm presently getting, that requires one injection only, rather than eight injections administered every other day). Peg-A is just as effective and less prone to evoke a drug reaction and obviously less stressful than my L-Asparaginase schedule which -- since Jefferson doesn't do outpatient chemo on weekends -- involves going to the Cancer Centre on Monday, Wednesday, Thursday and Friday for two weeks. It's thought to be more expensive, though, so they turned it down even though one shot is eight injections worth.
They also refuse to fund the numbing cream used for accessing my port. I just wish someone would hold down one of those administrators and drive a one inch long needle into his/her chest wall, and see what fun it was. And since chemo breaks down your mucous membranes, you end up with mouth sores, however careful you are. So the oncologette prescribed a lydocaine mouth wash. Which Jeff won't pay for either.
They sure don't mind whittling away at the nickels and dimes after they've fed you full of chemicals that leave you unimaginably tired.
Tomorrow's my day off and things will doubtless look better then. I'm off to bed, queasily.
Posted by maddy at October 27, 2003 07:23 PM
This sounds awful. Why does Jefferson have the final say on your medications? Are you an employee? Did you sign up for a managed care plan they own or manage?
What I'm getting at is whether there is a separate insurer to whom you can appeal or whether you can transfer to another group/plan covered by the same insurer. If you can convince a Jefferson staff doctor to be a forceful advocate for you that may help, too.
Marshall (who set up several hospital-based PPO's and IPA's back when he used to practice health care law)
I think you should videotape, at close range, just what a giant needle going into your chest port looks like, complete with vivid audio descriptions of how it feels, then send that to the bastards.
Folks on the arthritis newsgroup who use chemo agents (methotrexate, in particular) get mouth sores. The treatment of choice for that seems to be prescription-strength Folic acid. Even the OTC stuff is fairly inexpensive. Ask the oncologette if that might help you.
For the other stuff, do they have some kind of patient advocate/umbudsperson at the hospital who could help with Pain Management issues?
I wish I believed in a Hell, so I could wish the
wrinkled underfed souls of HMO executives into it.
Tomorrow will be a better day, sweets.
I am *outraged*! They won't supply fucking *numbing cream*? Bastards!
Maddy, how can we help?