I’ve been trying to be cheerful and optimistic through this journey, but my optimism is being stretched thin.
Ironically, it’s not my immediate medical condition that’s got me aggravated; I actually feel OK. It’s not the long-term prognosis; that’s still pretty good. It’s not even the month in the hospital with the treatment and transplant that kills roughly 10% of the patients who do it; I will get through that.
It’s the months after the transplant. Let me explain. After the roughly one month hospitalization, there will be a two or three month period where I will need to be isolated in house arrest near the hospital. UCSF has a dormitory thang, where I can stay, so that’s OK. BUT, I’ll will be required to have a caretaker there 24/7. The medical folks want as few caretakers as possible, ideally only one, but I’d be allowed to have two or three folks, each working for an extended period. The caretaker has a lot of responsibilities. They need to tend my central IV line. They need to shop, prepare meals and keep the room clean. They need to get me to medical appointments. They need to make sure I get my meds on schedule. They need to monitor my vital signs, and get me to the ER if my condition worsens. They may need to help me get to the bathroom. Worst of all, they have to put up with me at my grumpiest. Sounds like a really shitty gig; I wouldn’t wish it on my worst enemy. Andi has her own health problems and is in no condition to do this.
It gets worse. There’s some help available from the government and private foundations, but not nearly enough. There’s a state program called IHSS which will/would pay a minimal wage for someone part-time. There are some small private grants available (I’ve received some of those already). Whoever does this would certainly need to be paid better than the available help would allow. I have barely worked for the last seven months. My little nest egg—originally budgeted to get my teeth fixed and print my long-delayed photo book—has been squandered on basic living expenses and is basically gone. Not only do I need to pay the caretaker(s), but there will be several more months of basic living expenses to deal with before I’m on my feet again. I will need to fundraise for both living expenses and caretakers’ pay.
But fundraising raises its own problems. I’m sure that if I swallow my last vestigial trace of pride and set up a GoFundMe or similar crowdfunding pitch, I could bring in a few thousand dollars. But would that jeopardize my Medi-Cal eligibility or other sources of help? I get conflicting answers from different people. research is ongoing. It would certainly make me ineligible for SSI or Snap. Perhaps I could launder the money through somebody else’s bank account… but that just piles the I don’t wannas on top of each other, and we’d get caught and strung up by our toenails in the public square.
I’m also considering organizing a fundraising rock & roll dance party. There’s some potential for bringing in some more loot there, but so far I haven’t been able to get a straight answer about when either of the possible halls are available and how much they’d charge me. I can’t do much organizing without a hall and a date.
But wait, there’s more… the medical folks can’t/won’t schedule the transplant until the caretaking plan is in place and approved, and it’ll take 6-8 weeks after the plan is approved to actually start the transplant. It’s imperative that the transplant happen in the next several months. I really have no idea how to go about recruiting someone for a gig with no known start date, no known end date—November, December, into January, maybe?— and it pays… I have no fucking idea how much. A few grand?
And who would this/these caretaker(s) be, anyway? Family? My family members all have lives far away from UCSF, they can’t possibly pull up their life and relocate for however long, whenever it actually happens. I can’t even ask. Hell, if the shoe were on the other foot and one of them asked me to do this, I’d… uhhh.. I have no fucking idea if I’d do it. Friends? I’m at a loss to think of credible candidates. Maybe there’s some young person out there planning on going to nursing school who’d like to get some experience and a little chunk of $ for school. Maybe there’s someone a little older who is having trouble finding housing and this would give them a place to stay for a while and money for first & last month’s rent when they’re done.
If anybody is interested, or knows somebody who is interested, let me know.
Watch this space for info about my crowdfunding drive, when I get that together.