Cancer Recovery Update (Patreon)

Here's the most recent update from my GoFundMe to help me cover the costs of cancer recovery. If you want to help cover those costs, the link is https://www.gofundme.com/manage/help-owen-kc-stephens-fight-cancer/updates

I didn't mean to let more than 2 months pass between updates. In a lot of ways, this failure is indicative of how things are now. Stuff gets done, but not as quickly or regularly as it should.

So, first the medical update. We seem to have finally found a cocktail that keeps my most recalcitrant electrolyte in the "normal" range. The very BOTTOM of the normal range, but normal is normal.

At the same time, some other indicators that were at the bottom of their own normal range have tanked. I have too much CO2 in my blood... by what is apparently a scary amount. That could mean lots of things, but it also might be what's making my brain fog so hard to shake. The easiest thing to rule out is that my CPAP, which is a decade old, might not be doing as good a job helping me sleep as it claims it is. So, I'll be having a sleep study asap. Since I am also having new mental capacity issues, I'm also going to see the neurologist again, despite the fact that apparently no one makes a hold-the-head-still cage for MRI's that fit my enormous melon.

I guess the people who told me I had a swollen head were right.

I'm up to 34 pills a day to try to keep my system in check. Two of those are unrelated to post-chemo/radiation issues. And three of them I take just to let me tolerate 15 of the others.

I have Occult Blood again, which is not as fun and magical as it sounds. My 25-Hydroxy Vitamin D Total is insufficient, and is just a hair from being deficient. Oh, you thought insufficient and deficient were synonyms?! Not to doctors! One means a new pill. The other means you get told to go to the ER if you feel a new pain you can't immediately trace back to a stubbed toe.

And... my testosterone is low.

I'm sorry, it's “severely low." At least that SOUNDS like a different degree of problem. I've been testing with low testosterone for months, but since different methods of collection produce different levels of unreliable result, we've been kicking that can down the road as we do more and more tests to make sure we really know what is going on.

My level is so low, it (and I quote) "indicates medical investigation to rule out pituitary, hypothalamic, or testicular failure." I’d hate it if my hypothal wasn’t amicing properly.

Like too much CO2 in my blood, testosterone levels might be the cause of some of my issues. Specifically, it may be causing my "Severe, unyielding fatigue and low energy" and "Mood disturbances, including depression or deep irritability."

I'd have called it "Being a grumpy fucking bastard," but I am told the medical term for that is "deep irritability." Sometimes doctors used a thesaurus, sometimes they didn't.

Aaaaaaand I'm past due for my 6-month-or-6,000-mile checkup. By which I mean a camera up my tush. I need to schedule it. But I am arguing with insurance if it's on the standard of care. Because if it IS, it's completely covered. If it ISN'T, they don't have to pay for any of it.

Guess which side THEY are on?

See, since we went with a cancer treatment not on the standard of care (chemo and definitive radiation rather than surgery), that means ALL post-remission procedures can be argued. The insurance will LOSE this fight, but it's almost a part-time fucking job to force them to that point.

Which brings us right to our second part of the update--mental.

I was crashing badly over the summer. My mental care team, in consultation with my PCP, added a new NDRI (norepinephrine-dopamine reuptake inhibitor) to go with my SSRI (selective serotonin reuptake inhibitors).

So, all my reuptakes are inhibited. I am told this is a good thing.

My social anxiety is down a bit, which is good. My ability to see any fucking path no matter how tenuous through the constant rain of bad news, hurt friends, political insanity, budget pressure, and cascading medical issues is up a bit, which, I mean, I GUESS that's good.

After a 30-day test period, we doubled the NDRI.

What is hitting me the hardest right now remains mind fog, fatigue, and lack of focus... along with grief. It's like some of the things that happened while I was literally fighting for my life (loss of a beloved pet, loss of my mother, and so on) never got the attention from my mind they needed, and now that my brain is working a little better, it's going back and picking up all those grief rocks to try carrying around.

And that brings us to the third area of update, financial.

I have managed more and better-paying work this year than any year since 2022. It requires my near-complete and total attention 24/7 to maintain that, but I have been since March. Sadly, this comes the same year that I could only afford pretty crappy medical insurance (which has already cost me thousands of dollars in higher deductibles), a spike in energy and food costs, and when a lot of the medical debt I have been carrying stopped being at the super-low interest rates we originally had, and switched to merely low interest rates.

I'm still carrying around about $45,000 of medical debt. It's my second-largest budget item, right after the mortgage. And even when we can manage more-than-minimum payments for months at a time, the total debt shrinks slowly because I STILL have to get expensive drugs, have expensive tests, and see six to seven different specialists every year. If we manage to whittle it down at all at the end of the year, it pops right back up when the deductibles reset the next year and things like $300/month drugs and MRIs have to be paid for in full again.

It feels... endless.

Which, now that I say it, still seems better than me having ended.

Thanks for your help, and for those of you who prefer monthly updates... I'll TRY.