Five Years of Life with Stage IV Cancer

And all I got was this lousy president

Greetings!

I’ve been off the air for a bit more than a year; seems much longer to me, and probably to everybody who has continued a paid subscription during the vast silence. Thank ye all, ye gallant few. I’m back, although I don’t know for how long or how frequently.

I decided to write about this in light of recent events and the unusually loud confluence of health care, politics and economics. The punch line here is that I’ve racked up hundreds of thousands of dollars in medical expenses during the past five years and it has barely cost me a dime, and I’ve been denied essentially nothing in the way of treatments and drugs. How can that be?

My cancer diagnosis isn’t quite five years old, but close enough; it was delivered toward the end of January in 2020, and the advanced state of affairs suggested I’d been living with it for some considerable time prior to that. My doctor sent me for x-rays because I’d been complaining about unusually persistent lower back pain, and the imaging turned up some lesions on my spine along with what looked like a couple of swollen lymph glands. One test followed another to the ultimate and surprising (mostly to the oncologists; what did I know?) diagnosis of metastatic prostate cancer.

The initial prognosis was 18-36 months. Fortunately I responded really well to the treatment—so well that after two years, I was able to enjoy what is cheerfully described as a medication holiday, which lasted for another two years, at which time my labs and then imaging tests took a turn for the worse. Turns out a slightly shorter vacation might have been better—more lesions on the spine, more back pain—but we restarted a slightly different treatment regimen to which my body if not my spirit has again responded really well. That was in March of this year (2024) and the treatment will continue at least through March of next year.

I should mention that along the way my thyroid requested defenestration on account of cancer there, but that was a blip, really; an inexpensive daily pill and periodic labs are the only lasting impacts. The most memorable part of that episode was when the surgeon showed up to chat the morning after the operation and without warning, poked me in the throat to see if it hurt. (It hurt.) What the fuck, man.

I should also mention that somewhere in there I contracted the plague, which required a hospital visit for an antiviral infusion, and then about nine months of physical therapy for long covid symptoms. My brain still hasn’t fully recovered, although there are other factors involved in that, including a lifelong history of chronic depression for which I get therapy along with my blessed ketamine treatments and a couple other (relatively cheap) drugs.

Much of this stuff was really expensive. The original cancer treatment was $9,000 per month, plus a quarterly infusion that cost a few thousand more. The thyroidectomy and two days of hospitalization were less expensive, but still expensive. The ketamine treatments run more than $1,000 per month, depending on the frequency. The cheapest stuff was the Covid and long Covid treatments.

But I literally didn’t pay a dime until I switched to a Medicare Advantage plan, which I intend to drop next year if there’s a next year, which if there’s not, probably won’t be on account of the cancer. Even with the MA plan, the copays are minimal and the expense of the various treatments blows past the deductible amount in pretty short order. (The current cancer treatment regimen runs about $14,000 per month, so the 2025 copays won’t last past January.)

(Let me insert here that if you’re a guy and you’re older than 55 or so, and your prostate is in any way behaving suspiciously, maybe you should get screened for prostate cancer. I sure wish I had. By the time I was screened, following the diagnosis, my PSA count was 742, or roughly 200 times what could have been considered ideal.)

So: huge bills, no expense, no premiums. What’s up with that?

I’m a broke-ass motherfucker, is what, living well below the federal poverty line, even if I weren’t in Hawai’i where it’s set at $2300 more than it is on the mainland. I’m old enough to get Medicare; I’m broke enough to get Hawai’i’s brand of Medicaid; I qualify for Medicare’s “extra help” for broke-ass motherfuckers.

If you’re sufficiently rich to self-insure or you’re sufficiently impoverished to get comprehensive government coverage, you might enjoy a situation like mine, with the caveat that very few states are as generous with care for the poor as Hawai’i is, and not everybody lives 15 minutes away from a respected teaching hospital incorporating a decent low-income clinic and an excellent cancer treatment center.

(Even with Hawai’i’s system, anybody who doesn’t live on Oahu and needs specialist care will be jumping through some hoops.)

If you get into a situation like mine and you’re not really rich or really poor, or you’re really poor in one of the many states where legislators and other elected officials hate poor people, you (or a loved one or a friend or some total stranger whose life is similar to yours) are at risk of being shit out of luck.

(I mean, you could say developing stage IV cancer means you’re already shit out of luck no matter what your financial situation, but honestly, I feel lucky.)

Means testing is the devil. The main reason people who aren’t eligible for Medicaid hate the program is that they’re not eligible for it. Why should somebody like me get basically unlimited, basically no-cost care when somebody like them might make a few thousand a year more and get ruined by medical bills? Why should they have a choice between going uninsured or buying crappy insurance with unaffordable deductibles and some guy like the late Brian Thompson standing between them and the medical care they need? Is that fair?

No: No it is not fair, which is one of the biggest obstacles to implementing comprehensive Medicaid coverage, which is one of the best arguments for implementing universal, non-means-tested government health care. I mean, aside from putting the Brian Thompsons and all they represent out of business before somebody executes them, thereby sparing even more lives and expense—nationwide manhunts and high-profile murder trials are expensive—than universal health care would do on a strictly medical basis.

I will spare you the ritual chanting of the numbers showing how we pay much more for health care than any other wealthy nation, with much worse results, and how much we would save if we behaved like them, and why a robust across-the-board social welfare system is a big part of why people in other countries live less desperate lives than a lot of people here, but if you’re interested you can find lots of that stuff in the archive. Sufficient unto the day is to say that the dead guy and his whinging mealy-mouthed boss are great contributors to the problem.

I wish to add that if you’re going to lash out at insurance company personnel, lethally or otherwise, always punch up, hard as it may be. People gotta eat, and even a universal health care system will have people obsessing over billing codes and the definition of medically necessary care. They just won’t be doing so on behalf of corporate shareholders and obscenely wealthy executives.

I should add also that my good fortune, such as it is, may well come to a soul-mangling halt at the end of this fiscal year, when the people who hate people will have had a full legislative session to fuck with people like me to their hearts’ content moving forward, and not just on health care.

People of good will like to complicate the genesis and continuation of this state of affairs beyond reason. The reason we don’t have universal health care is that the people who could create it are paid really well not to do so. You can talk about nuance and polling and reluctant legislators and the innate American resistance to gubmint overreach, but all of that is bought by the people who profit from it, with an assist from a cowardly press. How many stories about the Thompson murder and the accompanying howls of popular rage and glee did you see that included serious, comparative examination of alternatives to our current horrorshow?

It’s really that simple. That simplicity says things about our alleged democracy that a lot of people are uncomfortable hearing, so they want to porridge it into oblivion, but it really is that simple. And one of the potential outcomes of the process has always been a Trump, or worse.

I’ve seen a lot of stuff about how stupid voters are, to have elected Trump and his coterie of homicidal legislators. Well sure; half of the voters are below the median. But that’s always been the case. Everybody is dealing with the same electorate. Punch up, motherfuckers.

Anyway. That’s my story. What’s yours?

I may or may not be writing regularly henceforth, so a paid subscription is a leap of faith which you’re welcome but obviously not obliged to make. The big difference between a paid subscription and the free one is that the paid one costs money. I appreciate either.

I find writing more difficult without music. Today’s music included Kim Deal’s solo album, Nobody Loves You More (official video); Tegan and Sara’s Crybaby (“I Can’t Grow Up” official video); Coleman Hawkins Encounters Ben Webster (“Blues for Yolande”); and Rubblebucket’s Year of the Banana (“Stella the Begonia”).

Take care; be well.