Health Update: The Long Haul (Patreon)

It's been a while since I did a formal update on my health, in large part because the past couple of months have been "Hey, you're on chemo!" and not much else. But some things have been clarified in the past two months, so here's info on where things stand.

For background: I had a pulmonary embolism in February 2023, as told in these articles: Part One, Part Two

The bleeding I'd had even before the embolism meant I'd already scheduled a colonoscopy to look at it (which was going to happen in May), but my colonoscopy got moved up, as told here.

That resulted in a cancer diagnosis, and I saw a colorectal surgeon as told here. Then a cardiologist, as told here. Then I was nearly tortured by an MRI, as told here. Then I had to offer a blood sacrifice to a CAT scan, got a massive kidney infection, and was rediagnosed as having late Stage 1, rather than Early Stage 2 cancer, as told here. That led to my case being presented to the shadowy and mysterious Tumor Board, and the decision to start me on three months of Chemotherapy, as told here.

Then I got surgery to have a port installed for chemo... and discovered my insurance wouldn't pay for chemo infusions at the only place that could book me in time, as told here.

All caught up? Good, because if my wife wasn't keeping extensive notes for me, *I* would have lost track at this point. (My wife is the only person I know who actually got a job in part because she said she was the note-taker for her ttRPG groups. :) )

Obviously we began fighting the insurance (I haven't played roleplaying games for more than 40 years without learning SOMETHING about taking on vast, shadowy organizations). That process would take until September sometime but we were all-in on the struggle... only to discover that they were pulling out of my entire state at the end of August.

"Contact your State Insurance Board!" people cried. Well, sure. Except it's my state insurance board that's ending the company's policies, because the company is bankrupt.

So, my insurance was going away at the end of August, and had no money. Time to get new insurance.

That meant going back to the ACA marketplace website, entering the secret words that allowed me to access it's choices, and comparing scores of options. I had to balance monthly cost, deductible (because we were going to be considered to have not met any of our annual deductible with the new insurance), in-network options, surgery costs, chemo and RX coverage, specialist co-pays... all while suffering from brain fog brought on by poisoning myself to shrink my tumor.

Luckily, I spent a decade min/maxing Car Wars vehicles designs and Champions characters at 3am on no sleep. Soo, this kind of bleary number-crunching came naturally, if not easily.

And, a new policy was selected. It costs twice as much as our current one, but we also just paid off our car. So, we should be able to stretch to cover the bill. And while, yes, it has a whole new deductible for the last 4 months of the year, a coalition of amazing people came together to cover that for us "so you had one less thing to worry about."

It did, indeed, lift a huge worry. Thanks, folks.

Similarly, I have folks covering my chemo cost (since insurance doesn't), covering unexpected bills that we expected to be covered but weren't, and putting together whole benefit products to help meet costs. Our friends, colleagues, and the industry as a whole have had a months-long outpouring of support that, frankly, leaves me humbled.

One of the rules I learned with social RPGs as my main interaction with humanity has been "don't be a dick." Turns out that policy may literally save my life.

With those minor life-and-death matters covered, all I've had to do is survive the chemo itself. I'm doing 2-weeks on, then a 1-week recovery, then 2 more weeks on schedule. Each day during those 2weeks, I take 12 poison pills on a pretty strict schedule, which dictates when I can eat, when I can sleep, and leaves my brain feeling like I am trying to think through a wall of oatmeal.

My side-effects have varied in intensity and frequency, but the most common ones are exhaustion, insomnia (a cruel combo with exhaustion), brain fog, chills, nausea, skin sores, intense body aches, and anxiety. The last one usually only hits me in the last couple of days of my 14-day cycle and, honestly, I always forget it's coming.

After each cycle I see my oncologist (out-of-pocket atm, but that should change come September), and we try to tweak the things that can mitigate the side effects. We also do bloodwork each time, and the numbers all suggest the chemo is successfully shrinking and repressing my tumor. It ALSO killed my iron and hemoglobin, but we did two iron infusions (using my port, which at least mean that surgery wasn't useless, even if it's not what we installed it for), and atm that seems to have brought my numbers back in line.

(Cue game night quote -"I trust in iron!")

After the next course of chemo, I'll be going back to my trusty friend Frank the MRI, to get a look at the tumors and their suffering, rather than trust bloodwork. Which is important, because I'm on chemo to shrink and weaken my tumors, but there's almost no chance this will get rid of it. For that, I'll need surgery.

Well, two or three surgeries, actually. Likely with a 4-to-6 week recovery time between them. And, we currently think, I'll be on 2-on-1-off 3-week courses of chemo the entire time, and maybe a bit past the last surgery.

So... 15 to 21 weeks more chemo is our best guess. Unlikely to be shorter than that, and could easily go longer depending on getting the needed surgeries scheduled and recovering from them without complications.

The Long Haul, not ending before November, and quite possibly running past next February.

But I'm here for it. And while I worry about missing a year of work due to medical issues, and only being able to think for a few days each month, and where all the money to pay for this will come from, none of that is going to stop me from poisoning, stabbing, and ripping out the tumors that have stolen nearly a decade of my life. Spite will carry me through.

And the love and support of SO many people, to whom I am eternally grateful.

SupportIf you want to help me cover cancer treatment costs, right now, the main way to offer your support is to purchase Like A Boss, a charity project that friends and colleagues within the game industry created to help pay my medical costs. You can pick it up here or here.

Other options are to increase your pledge level to my Patreon or, if you prefer, donate directly through my Ko-Fi account - https://ko-fi.com/owenkcstephens