Health Update: Battle Fatigue (Patreon)

I have cancer. I’ve been on chemo for more than 6 months. Chemo is a stopgap, until I meet conditions for surgery to remove the tumors.

You can get more details about all that starting here.

For roleplayers, I appear to be in the part of the campaign where I know who the bad guy is, but there’s absolutely nothing I can do about it. All research fails, all leads fail to pan out, and no civilians appear to have the sense of urgency the situation calls for. It sucks in a game, and it sucks in real life.

I have a prescription my colorectal surgeon, oncologist, GP, and urologist all want me to take. It’s $1600 a month, the pharmacy doesn’t have any and doesn’t know when they will (and neither does any other pharmacy I’ve called), and my insurance won’t tell me if its covered until I try to check out with some in my hand. If insurance does cover it, it’ll likely be “only” $320 a month. I’m likely to be on the car-payment-costing-at-best drug for years, and maybe the rest of my life… if I can ever get any at any cost.

This, by the way, is where a GOOD roleplaying game would reveal the location of a dragon sitting on a hoard of RX. We could get a team together, try a heist, have it go terribly wrong, and kill it in a spectacular battle with iffy CGI effects. Or at least see if the dragon takes my insurance.

Also, I have one set of doctors I got a referral for in March wouldn’t even send me an intake until May, which required me attend a seminar in July, which I did but they failed to send me a follow-up within 2 weeks and I wanted 3 to call them, so “their procedure” (which no one, including their facility administrator was willing to consider altering, even though I have cancer and am on a clock) was to require me to take the SAME seminar again and the next one was in… September. So I did, and got their intake form this time, and sent it back, and was told I’d head from them in 2 weeks. At 2 weeks and I day I called noting I had not heard back, and didn’t want to be stuck at the beginning of their procedure again. Instead I was told they were trying to decide to take me on as a patient at all, since I have cancer.

Which was WHY I had a referral to them, and they knew in May. The most annoying thing here is I can never complain about a fictional administration being unrealistically incompetent again. This SHOULD lead to a Shadowrun or Cyberpunk game, where we hack their system and add me to their list. Hell, I’d play it in TORG if I could cut some red tape that way.

But, instead, I get to deal with the additional complication that my insurance won’t cover their services, which run about $32,000. It’s clear that when they told me that, they expected me to dejectedly say “Oh… nevermind then. Sorry for wasting your time'” so they had just stopped worrying about it. Instead I informed the drone on the phone I’d cover it out of pocket (medical credit card, here I come), which left them sputtering and saying they’d get back to me in a week about if they were willing to take me.

That was mid October. I’ve spoken to someone there every week since then. No decision yet, but each time they expected it’s just be another week. It’s a freaking Pythonesque farce. ‘This is customer service.’ ‘No it isn’t.’ ‘Yes, it is.’ ‘No. It isn’t. ‘Ah-ha but yes, it is.’

(“Now you must bring us… a shrubbery!” Art by Berdsigns)

Meanwhile, the Tumor Board was beginning to consider changing the circumstances under which to operate on me, since they can’t get these other drugs and doctors to help, either. Which is higher-risk, more expensive, and has a higher likelihood of an “undesirable outcome” (I guess saying “it could be an ugly TPK!” doesn’t sound good in a doctor’s office). So, how is that going?

Last Wednesday, they told me they’d know by today. I called, and they don’t know yet. They realized I had an MRI next week, and decided to wait to see the results of that. But since I have it after next week’s tumor board meeting, the earliest they can make a decision is in 2 weeks.

And this keeps happening. A few days becomes a few weeks becomes one more test, one more drug no one has, one more insurance denial I have to navigate. My oncologist is slowly growing concerned with how long I have been on chemo, especially when there is currently no end in sight. My colorectal surgeon is talking about performing surgery in higher-risk conditions because we’re not having any luck lowering those risks. The current “best plan” literally involves scooping some of my fat out through liposuction to make an alcove in my flesh they can both use to access my guts, and if needed (which is likely) house a permanent ostomy bag connection.

I’ll literally be mutilated in shape, so I can survive. Mutilated by liposuction which, I’ll note, I have repeatedly been told I can’t have for any purpose whatsoever, no matter the quality of life gain a tiny amount in the right place could give me.

So, I wait. Maybe I get the drug, maybe I don’t. Maybe it’s $1600, maybe it’s $320… so $19,200 or $3,840 for a year. Maybe I get in with the doctors who have strung me along since May, maybe I don’t. Maybe 2 more weeks of chemo, maybe another 6 months. Maybe I have Ikea shelves carved intoo my flesh for the convenience of medical tools, maybe not.

Maybe I’ll know in 2 weeks. Maybe I won’t. But what seems certain at this point is that nothing will actually be DONE until January… when my insurance’s annual deductibles will reset for the second time in 6 months.

Oh, and I need to arrange for next year’s health insurance. Time to roll on the Random Wandering Monstrous Complication table.

Back in February, in the hospital, I knew I had an unlimited amount of fight in me to overcome this. Now, I see that’s not true.

SupportThis *all* takes money, bills are mounting, and my resources (of energy and money) are running thin. You can donate to my ko-fi, if you want to help. There are cat pics there, too.