Interim Thank You and Medical Details

I just wanted to say thanks to all of you who signed up or bumped your pledges after my last expression of medical hardship. It means a lot, both emotionally and financially. I haven't formally given an update on the actual details of the medical situation in a while either, so I'm gonna try to do that. Someone joined the Discord server shortly after my last post and asked for more details on what's going on with me medically, so I typed up a big super-depressed summary there, but it wasn't terribly coherent. I feel like my brain is at least 50% there right now, which is better than the average these days, so I'll try to itemize it a bit better here. It's become a complex web which spans dozens of doctors (who don't like to communicate with each other) and disciplines at this point, but I'll try to mainly focus on the things that are actively evolving.

The main thing at the moment is that I'm going to be eating some more radioactive iodine in 2 days, so we'll see how that goes. My uptake on the last one was 47%, which is an absurdly high uptake for someone with no thyroid. That's presumably because they accidentally left a chunk of thyroid in. This has made the actual thyroid cancer situation more ambiguous, and put me on an "untested path" as Banner's head of Nuclear Medicine put it. But the hope at this point is that the last treatment murdered it all no matter where it's living, and that the uptake will be close to 0 this time. My salivary glands can't really take another full round of this stuff, so I'm not going to go down the other line of possibilities unless it actually comes to that. That line sucks.

I don't know if many of the actual quality of life symptoms I'm experiencing are from thyroid cancer or not, at this point. My immune system seems to be generally sucking a lot, and I've been sick 5 or 6 times so far this year. I've got a bilateral ear infection as I write this, and that's a weird one for me, as I've never had an ear infection before. I'm also having a lot of days where I suddenly wake up with severe inflammation around the back of my neck, with pain concentrated right around the base of my skull. This is accompanied by random fevers, usually in the 102-103 range. The fever stops within a day, and I think the pain I continue to feel after that is probably residual, speculatively from the damage done to the area by my immune system. Similar things are happening with my other joints, and my right knee has gotten the worst of it. They did an MRI of the right knee a while ago and confirmed that it's swiss-cheesed, I may have already mentioned that at some point. There's a lot of weird stuff like that going on, which is generally manifesting under a wide umbrella of physical disabilities and pain, but none of it is definitively related to cancer.

Then we have the heart stuff. I had to spend a day in the ER last week, because my pulse pressure fell to 18. Systolic suddenly crashed, and I definitely felt it, along with some significant pain in the left side of my chest and visible swelling in my hands and feet. They did a couple of EKG's in the ER and it looked like I wasn't having a heart attack, but they watched as my systolic shot up to 154 from 98, then fell all the way back to 110. Meanwhile, my diastolic remained in the 70-80 range. Certainly disturbing numbers, and seemingly not otherwise tied to my mental state. I'm already seeing a cardiologist, they have me logging my blood pressure and such at the moment, that's the only reason I actually bothered to check it when I felt swelling. I probably would've otherwise written it off as more autoimmune bullshit.

I'll be getting an echocardiogram and another at-home monitor thing in another 10 days or so. As the ER doc pointed out, they would have to give me an outpatient referral for any actual heart imaging, and I'm likely better off just waiting for my already-scheduled echocardiogram. The ER doc also said pretty explicitly "you need to go to Mayo" as I was discussing how this might relate to my litany of other issues, so I explained the insurance situation to her as well. She seemed genuinely surprised and perhaps even offended by it, which surprised me a little bit. I kind of expected her to be used to seeing this type of scenario. I wonder if insurance and care standards have only become this appalling in recent times, and I realize I don't have much perspective there. Although I've been having medical problems off and on for a good decade or so (damn you, pancreas), it's only been the last couple of years that have forced me to gaze upon the entire hideous edifice of the system.

In retrospect, I kind of suspect I was being eaten by whatever has now given me the ear infection, and that's probably what exacerbated the cardiac issues and sent me to the ER. There's certainly something wrong in there, with bradycardia persisting this long after my last surgery, so I'm hoping on that end that the echocardiogram is useful. It makes sense that this bastard virus/bacteria added a bit too much strain to the already strained organs.

Then we have the whole GI situation. Eosinophilic esophagitis has plagued me for many years, and the chronic pancreatitis has been more chronic this year. These are more things that point to screwed up autoimmune responses damaging healthy tissue, which I still suspect is what led to the thyroid cancer to begin with. It's probably not worth diving further into this particular thread, though, because it's all quite shitty. Ha ha ha, just kidding. But really, it isn't too useful to delve further into the GI issues, I think it all falls under "symptoms of underlying disease" and I don't think any of the GI conditions are actually at the root of what's making me suffer. Beyond the actual GI-specific suffering. You don't want to go through pancreatitis, and you really don't want to have to go through it every month or 2. Definitely plays a part in the deterioration of my sanity.

I had hoped the rheumatologist would be way more useful than they have been. They've certainly confirmed that there's inflammation via blood markers, but that isn't a surprise to anyone, because it's pretty visible and the pain has reached ridiculous levels. But there are no antinuclear antibodies present, which made the rheumatologist immediately close off pretty much their entire diagnostic and treatment paths. That still seems distinctly wrong to me.

And finally, we have the latest thing, respiratory depression! This is something I've experienced in the past under opioids, in particular after surgeries. Unfortunately, it's been coming up frequently lately even without any opioids or other changes in medications. I've had some nights where I fall asleep a good 10 or 20 times, and wake up gasping every time. I've also felt it occurring while not asleep, as I'll exhale, and the impulse to inhale will just not be there. I can sit there with no air in my lungs, feel my heart slow to a crawl, and it seems to take a good minute or so before I actually feel the physical impulse to inhale. I think this is what's happening when I'm sleeping, and the "oh shit, inhale bitch" impulse is waking me up. This is all new to me, and there are a number of things spanning different systems which could be causing it. A CPAP machine might help the problem, but I don't think whatever is underlying it should be ignored either way.

I have a pet theory which ties a lot of things together, but there's a great deal of speculation involved. It's still more based on my intuition than I'd like. But I'll share it here anyway, what the hell. So we have this intense pain at the base of my skull, which actually started a bit after my thyroid cancer symptoms, but still 9-12 months before the actual cancer diagnosis. The intense one-sided tinnitus also started at exactly the same time. They did an MRI when I first complained of this, and nothing was visible. However, I looked at that data myself, and the resolution was wholly inadequate. The flocculus itself is barely visible, represented by just a few samples on a given axis. The sample steps are so massive that a sizable tumor could easily be hidden between samples on multiple axes. But I'm really starting to suspect either a small tumor or some cause of inflammation right in between the flocculus and medulla oblongata.

This would explain the one-sided gaze-modulated tinnitus, the occasional screwed up thing that happens where it feels like I'm having some kind of mini-seizure if I rapidly move my eyes (also started happening right around the time the skull pain and tinnitus set in), the localized pain/pressure, and now, the breathing issues. A lot of symptoms fall perfectly into place if we have something going on at that intersection. No one has looked in there since that initial MRI, so it's time to go back in. But I'm going to have a hell of a time getting someone to look in there with adequate hardware and/or with a focus on the right area to make the best use of samples. If you're wondering why that is, it's my insurance and the locally available care under my insurance. A lot of people don't seem to know how bad care standards are under the "poor people" insurance in America, but let me tell you, they are bad.

I'm not wholly set on the idea that it's a tumor, either, it seems like it could just as easily be some kind of inflammation affecting that region, or perhaps this same undiagnosed autoimmune condition is resulting in damage to my spine and/or brain stem, manifesting in these symptoms. This also becomes a conflict in diagnostic scans, because I'm about to get doused with radiation in proximity for MRI's related to the thyroid cancer. It's not really feasible to adjust any of those to get visibility into the cerebrum, but I'm already past my annual threshold for imaging radiation. The practical problems of having things be fucked up in somewhat proximal but still disparate locations.

But anyway, it's always possible that these things are still cancer-related, cancer can certainly cause insane autoimmune responses. But it can be difficult to tell if this type of cancer has metastasized. Ideally, the gamma radiation scan I'll be getting in 2 days will highlight any problem areas if they do exist, as long as any cancer cells are still behaving as thyroid cells. Although it would be nice to be able to pin all of these symptoms on something directly, I'm not really hoping it's still the thyroid cancer, because I'd really prefer to spend the rest of my life being able to salivate.

All in all, this is depressing as shit. It's easy to lose hope that things will get better, when they just seem to keep gradually getting worse. Not being able to exercise without causing more damage and inflammation has made it all a lot worse, physically and psychologically. Losing so much mobility has also been pretty crushing. This is exactly the type of day that I'd normally be out enjoying a short hike somewhere.

I had a lot of hope right after the cancer was diagnosed and they ripped the thyroid out. But as my body keeps deteriorating without a definitive link to any given underlying cause, I feel like something very serious is being overlooked, and I doubt in my available care's ability to stop overlooking it. Unless it does just turn out to be a case of "oh, well, yeah, turns out the thyroid cancer is all over the place after all." That would simplify things, although I think that would be a pretty bad prognosis. I'm still trying to figure out a way to get myself into Mayo, that seems to be my only real remaining hope of getting a team of competent people to connect the dots.

I don't know how many of you are really interested in all of this, but there's the totality of it as I see it at the moment. I'm sure I'm forgetting another dozen or so threads that have been investigated or are presently stagnating. Like the sleep study, been waiting on a mere referral for over a month now! But if you really want to know how a given thing is going, you're always free to reach out. Just no suggestions for teas or scorpion venom, please.

Thanks again, all of you who are financially supporting me through this by kicking money to me on here. If I do actually start getting better at some point, this income may well end up being the thing that keeps me from losing everything. If such an event occurs, I will unleash glorious mountains of love and gratitude upon all of you through the most amazing work-products I can conjure. It seems more likely that my heart or pancreas will fail, but I do still hold out some degree of hope that I'll finally find a doctor who says "what a bunch of idiots, here's an accurate diagnosis and treatment plan."