Trying To Get Treated Gets Trying (Patreon)

I have noticed that whenever wastewater testing shows a surge of covid in Oklahoma, my medical care takes a hit. Orders get lost. Callbacks don't happen. Appoints are harder to schedule at convenient times, and/or can't be made until weeks in the future. Even when no one tells me a specific person or office is dealing with covid issues, the entire system just becomes slower and far, far less efficient during surges, even if the general populace doesn't notice (or care).

And this month? Wastewater testing shows a surge here in Oklahoma.

It's worth noting I tried to see my GP recently (who is not directly involved with any of the story below, but likes to see me regularly to make sure my overall health is being maintained while I fight cancer, and I am very glad of it), and she had to reschedule because she had covid. And for that new appointment, which isn't until next week, she recommended a televisit, I suspect to keep me away from anyone with covid who might be at her office complex. We also had electrical work scheduled to be done on the house, which has now been rescheduled five time times due to installers getting covid.

So, I get it. There's a lot of covid hitting in Oklahoma right now, even if no one tracks specific cases anymore. But being in medical limbo is a particularly frustrating (and frightening) place for me. When I need different doctor's offices to coordinate, some just do a better job than others even at the best of times. Between my GP and my chemo oncologist? It's always been 100% handled on their end. When my colorectal surgeon or radiation oncologist get involved? Things take longer, or sometimes even fall through the cracks.

Right now? I'm wedged in one of those cracks. (And y'all know how big I am. I don't do well wedged into anything, but especially not cracks made of medical metaphors.)

Here's the history of my current frustration.

On July 10th I spoke to my radiation oncologist, who agreed that Frank the MRI had found what was probably remaining cancer inside me... but it was hard to be sure. She wanted a biopsy, so we would know exactly what we were dealing with and then form a treatment plan. The biopsy needed to be performed by my colorectal surgeon. (As were my previous buttiscopes earlier this year and mid last year. Honestly I think I ought to get frequent butt-flyer miles... or something. Preferably something that sounds less pervy than 'butt-miles.') I was told I'd hear back from the colorectal surgeon's office within a week, and if I didn't hear back to call the radiation oncologist's office back. Early the next week I also saw my chemo oncologist, and she agreed we needed a biopsy.

So, for that whole week, I waited for the call.

Then the next week, as instructed, I called my radiation oncologist's office to say I hadn't heard anything. They said they were working on it, but I should also call the colorectal surgeon's office myself. So, I did, and was told they'd check back with my radiation oncologist.

No call.

So, this week, I called the colorectal surgeon's office again. (From now on I'm just going to say CSO, which sounds like a cool spy agency and I don't think anyone reading this is going to confuse it with the Chicago Symphony Orchestra... though having an orchestra be instrumental in curing my cancer sounds like a good plot for a 2-hour farce. Like, "The Man With One Red Shoe," but it'd be "The Man With One Red Buttcheek." ... Okay, maybe it's NOT a good movie plot...)

Anyway, the CSO said they saw orders for a procedure, but not one that would lead to a biopsy, and assured me someone would call me Wednesday.

No one called me Wednesday.

So I called the CSO today, and talked to a different person, who said they knew about the issue, but had no orders for anything from my ROO (radiation oncologist's office, not an Australian marsupial, keep up!), and they'd call the ROO tomorrow. But last I knew, my radiation oncologist herself isn't in my ROO on Fridays. So I asked to be transferred to my ROO, and explained the CSO said they hadn't head from the ROO. And the ROO said...

1. That they left a voice mail on the 19th. (I did not receive a voice mail, but that happens sometimes. Also, the person I was talking to did not know what the voice mail said.)

2. They'll call me later today. (It's now 5:12 pm. I don't think I'm getting a call today.)

So, it's been three weeks since two oncologists said they wanted a biopsy, and to the best of my knowledge nothing's happened. And, it's worth noting, these are not fly-by-night or badly rated doctors or health systems. It's not just the best option in Oklahoma, it's in the top of all my options in the US. To get better, I'd have to get admitted to the Mayo Clinic or MD Anderson. (And as long as anyone in my state thinks they can handle my treatment, my insurance isn't going to cover either of those, and in any case it won't cover the cost of getting to or staying near anything out-of-state.) The health system here is just strained near breaking, and it's been pushed past its peak efficiency.

I know I need to be a strong advocate for my own health care. And my wife does an amazing job keeping track of things, and getting after doctors when I'm not up to it. But the stress of trying to get treatment, on top of trying to pay the bills, trying to make long-term plans when I have no idea what treatment I may get in the coming weeks or months, trying to recover from the two months of chemoradiation I had...

It sucks, and it leaves me with less brain to do anything else. And by brain was unreliable enough to begin with!

And yeah, this is a long way to say "no movement, no news," but dang it I at least wanted to accomplish something today, and a combination of updating and venting seemed within reach.

As always, thanks for all your support, and when I have news, I'll share it.

Even if it's a call later today.

(And yes, I added a cartoon cat's butt to this post. That's the mood I'm in)

Support

I'm fighting cancer and the aftereffects of chemoradiation. It's expensive. All paid members of my Patreon are already a HUGE help. If you are both able and wanting to do more, I do have a GoFundMe: https://www.gofundme.com/f/help-owen-kc-stephens-fight-cancer