How the Fight With Cancer is Going

Cancer and Career I’m Going to Be Okay… Eventually

How the Fight With Cancer is Going

This is my effort to bring people up to speed on how my fight with cancer is going.

So, let’s try to do a quick rundown and then tell people where we are now.

(Takes a deep breath)

The best guess of my medical team is that I got colorectal cancer in 2015, though we did not detect it at the time. We even checked for cancer at the time, because I began to get sick and hospitalized regularly, and then began suffering incapacitating fatigue. But apparently my hateflesh blob had levels in rogue, because it made its Stealth check and we missed it.

The fucker.

So it leaches my energy and focus from 2015 to 2023, when it decides to put in the extra hours and causes a deep vein thrombosis in my thigh (a ‘DVT’ – a potentially deadly bloodclot). The DVT causes a pulmonary embolism, which makes it nearly impossible for me to breath, and some nice firemen end up carrying me out of my bedroom to an ambulance to rush me to the E.R. I stay there for nearly a weekk and we ID the embolism and DVT, but not yet the cancer.

But I AM put on blood thinners.

The blood thinner cause me to start bleeding out my butt, my reaction to which is well represented by this animated short. That obviously caused immediate and massive concern. My wife and I tried not to panic, confident that doctors would break speed records figuring out why. I mean, you’d think getting to the bottom of that situation would be a priority for any medical professional. And… it kinda was? It only took about three weeks. Okay, nearly four. Turns out that’s par for the course for the rest of this story.

Anyway, it was cancer. Boo, hiss. But, at least I knew what had been wrong with me for nearly a decade. I got very, very angry at the blob of hateflesh, and still ma. I’ve been using that anger to get through the past year of treatments.

So, I am sent to see a colorectal surgeon in March of 2023, and was told we absolutely had to remove a length of my intestine and we needed to get it done by the end of May 2023. (I’ll note, here in May of 2024, that I still have not had that surgery.) Instead, I got bounced to a different colorectal surgeon, got denied for surgery, got a kidney infection, got a infusion port for chemo surgically implanted, had my insurance (which paid for the port surgery) refuse to pay for those chemo infusions so I had to do 12 oral pills every day instead which became 10 months of chemo, had my insurance cancelled mid-2023 (they went bankrupt) got new insurance (along with a new out-of-pocket total, so I had to meet my out-of-pocket twice for 2023), did a series of MRIs, cat scans, and colonoscopies, renewed my insurance for 2024 only for it to stop covering some of my medications, discovered that out-of-pocket maximums don’t count or cover amounts above what your insurance agrees to pay for (so if you are in-network and have pre-approval for a $30,000 procedure and have met your deductible and out-of-pocket max for the year, but your insurance company decides they only want to pay $20,000 for the procedure you are responsible for the other $10,000, no matter how often that happens and despite state and federal laws that say you shouldn’t ever face surprise medical billing), had a tumor board decide to go off the standard of care because of numerous factors like my blood thinners and instead added 7 weeks of radiation (which I consider to have been lovingly applied by Ylva the Radioactive Valkyrie, because that sounds better than “strapped to a linear accelerator wearing nothing but a t-shirt and socks).

(Oh, you’re for sure going to see more of Ylva. Art by Jacob Blackmon.)

Phew.

So, what’s next?

Well, in another week or so, my radiation oncologist will call to confirm I am recovering from 7 weeks of treating my gut like leftover pizza in a microwave. And, despite still facing fatigue and issues like my Atomic Taint Burn (which *isn’t* the name of a punk band, but sure *ought* to be), I am recovering. Slowly, and grumpily. At that call, we’ll set a time for an MRI and colonoscopy, which will look to see if we’ve actually killed my tumor. But that won’t actually be done until two months later, because until then my innards are too burned, swollen, and irritated to be able to distinguish between a hateflesh blob and a just-pissed-off-but-not-trying-to-kill-me-flesh blob.

If the answer is yes, I’ll finally be able to celebrate, after 19 months of fighting this fight. I won’t actually fully recover until October at the earliest, and we’ll have to set a schedule of MRIS and colonoscopies… for the rest of my life. That’s because for the first 5 years, there’s a chance the tumor would return even if we killed it. And after 5 years, there’s a risk that the radiation we used to try to kill it will give me a *new* cancer tumor. So, the BEST case scenario is that I’ll be getting probed at least annually for the rest of my life.

If the answer is that no, we didn’t kill the tumor, things get tough. We can’t try radiation again — I’m at max safe rads for that section of my insides. We might be in a place where the tumor board decides trying surgery is better than risking letting the tumor grow wild. We also might decide to find a level of chemo I can tolerate, and just put me on chemo… forever. In any of these cases, I won’t be recovered by October, and might never be able to risk airplane travel or public crowd ever again, becoming a permanent medical shut-in.

An what are the odds? Well, doctors (for good and understandable reasons) don’t like trying to give you hard numbers on such things. They especially don’t want to do so when you are off the standard of care. My complications have caused us to take the path less travelled for trying to beat my hateflesh blob, which means we have less support, and fewer case studies to draw from. But with some research, probing questions, and telling medical professions I understood all I could get was their best guess, I have multiple sources all telling me the same thing.

My odds are about 50/50.

That makes the next 9-10 weeks a particularly stressful wait. My radiation treatment (and things like the more-than-30 CAT scans that went with it) had a pre-insurance cost of over $650,000. Given how much medical debt we took out of 2023, thankfully my share of that is a relatively small percentage. But wow, does it bother me that all that time, expertise, and resource may have gone for naught. I’d really like to know NOW if I’m cancer-free or not, and if not what our Plan B (okay… more like Plan N at this point) looks like. Add to that things like preparing to move to a new house, a beloved pet who won’t be with us much longer, the aforementioned massive debt load… my stressors are numerous, considerable, and growing.

But, that’s not how it works. So, instead, I get to deal with the fragile nature of my body post-radiation. My fingernails, which I used to be able to use in place of screwdrivers, now fold and tear at the slightest pressure. My entire digestive system is still fragile, volatile, unreliable, and acidic. My skin is so thin that I managed to scrub through it on a knuckle while cleaning dishes with a sponge.

NOT steel wool. Not a scrubbing pad. Not even a dry, hard sponge or while using an abrasive cleanser. Just a soft sponge and liquid dish soap, and I managed to abrade my paper-thin skin so a flap of it pealed up. I was shocked. I had my wife take a picture. CW -ah… picture of an abraded knuckle.

(It is the ouch.)

And, that brings everyone up-to-date. I have a long recovery coming as the best-case scenario, and won’t know how I’m actually doing for more than two months yet. But I am going to proceed under the assumption that, one way or another, I will get back to my full health and energy–if not this year, then the next, or the next.

I’ll be around, folks.

Support: If you want to help with medical costs, there are lots of options, including a ton of products friends and colleagues have put together to help me when you buy them. If not, I get it, I promise. Even just liking and sharing my blog posts and social media posts, sending me good vibes, funny memes, and distracting pictures, and wishing me well is a huge help, and greatly appreciated.

GoFundMe -Every bit helps.

https://www.gofundme.com/f/help-owen-kc-stephens-fight-cancer

My Ko-Fi goes directly to me, if you prefer that.

https://ko-fi.com/owenkcstephens

Patreon – Being a subscriber is great. Becoming a paid subscriber is awesome.

https://www.patreon.com/OwenKCStephens

Charity Bundle (through April Only) — $1,100+ worth of game material for $30

https://preview.drivethrurpg.com/en/product/473197/owen-kc-stephens-is-rad-bundle

Charity Product — Like A Boss – A Book of Boss Encounters

https://preview.drivethrurpg.com/en/product/433500/like-a-boss-a-book-of-boss-encounters

Charity Product — The Traveler’s Guide to the Darklands

https://preview.drivethrurpg.com/en/product/455409/the-traveler-s-guide-to-the-darklands