Unfortunately, especially for anyone looking to these posts to catch up on my situation, I kind of abandoned this blog for the past couple months. It wasn't intentional but I got depressed and also so tired of talking about everything that was wrong with me. I still kept a handwritten journal with daily entries, though, so I'll attempt to catch up with entries that I made there.
My last blog entry was from mid-October and I was somewhere around the middle of a month's worth of fairly intense (double dose) radiation treatments. I wrote about being tired a lot, but also that the days were punctuated by random days with more energy. As the treatments progressed past what I had written here, the fatigue got worse, as did the internal side-effects of the radiation. The better-energy days still occurred, but less often. My (paper) journal contains a lot of entries about being "wiped out" as well as how basic bodily functions were becoming much more difficult.
After my last blog entry, my wife started driving me to the treatments, just to take something off my plate. It was a simple gesture but so very much appreciated. One aspect of the radiation therapy that I didn't expect to grow to despise was how I needed to hyper-hydrate myself before each daily treatment. No exaggeration here: I had to drink about 40 ounces of water and not get rid of it during the two hours prior to a treatment. There were times when I was literally lying on the table inside the tube, feeling like I was going to burst. I never had any accidents but I did have a couple close calls. The trouble was not only how much water I was ingesting but also how all the swelling "down there" was making me feel like I had to "go" even when I wasn't actively hydrating.
In my (paper) journal I wrote about how, "bodily functions have become increasingly difficult, uncomfortable, and immediate." I won't go into any more detail but suffice it to say that October was a very uncomfortable month. My last radiation treatment was on October 22 but all those uncomfortable side-effects stayed with me for several weeks to a month later. (I was quite relieved to be done with the hyper-hydrating, though.)
At the end of the month, I had some bloodwork done and met with my oncologist about the results. My PSA had slowed from its pattern of tripling every time we checked it but it hadn't gone down from the level that prompted the radiation treatments in the first place. My oncologist suspected that it might be a reaction to the radiation that he called "tumor flare" and asked me to have labs done again in a month to see how the PSA might have changed. Due to the Thanksgiving holiday and subsequent scheduling issues, I wasn't able get in again for bloodwork until December 2 and we met with my oncologist on December 4. My PSA was 3.27 at the end of October and continued to rise to 3.54 when we checked again in early December. The rise wasn't alarming but it was still a rise and could not be left untreated.
The oncologist mentioned several possible issues, including a mutation of the original cancer that wasn't generating PSA as rapidly. Since he was just hypothesizing he insisted that, before I left that day, I have some labwork done that was different and more specialized than our usual. He also put in a request for a different kind of PET scan than I had previously. My insurance company denied that at first (it's a very expensive scan) which freaked me out. Thankfully, my oncologist appealed the denial and it eventually went through.
Side note: We've started to see some very real evidence that my insurance company was shifting their decision making over to AI, and that their default was set to deny. I doubt they're the only ones doing this, too. Starting some time that fall, every single test, jab, scan, prescription, or procedure was at first denied. I won't pretend to know how all that works but we suspect that doctors then have to appeal the denials to actually get a human to take a look at the requests. In addition to that being a pain in the ass for doctors, imagine how I felt when I would log in to the insurance (Aetna) website and find that everything I needed was now being denied. Everything. I sincerely hope that all this is simply a matter of teaching the AI what to accept but I've got major issues with the default being set to deny everything! I already feel that insurance companies are superfluous gatekeepers leeching profits from the health industry but now they can't even be bothered to have human beings make their decisions?!
Between delays caused by these insurance company denials as well as the holidays, it felt like all I really did have in November and December was depression. Medically speaking, nothing happened in those two months! There was clearly cancer growing inside me again but neither the medical industry or the insurance companies seemed to be in any hurry to do anything about it. The aforementioned denials, quite honestly, felt like the insurance company had decided I was a lost cause. Scheduling appointments slowly and casually around holiday breaks only added to the feeling that people were no longer fighting to keep me alive. I got very depressed. I cannot fight this by myself. I am so grateful for the open and communicative relationship that I have with my wife because I think that's the only thing that kept me from slipping into clinical depression during those two months.
In the evening of December 15, I kind of lost it. My wife and I were saying goodnight and it was like my emotional floodgates burst wide open. I started crying and couldn't stop. That was a pretty rough night for me. Cathartic, perhaps, but I would just as soon done without all the upset. All my worry and depression had built up to a full boil and spilled out all over.
Finally, after months of nothing, I got a call from the Cancer Center to schedule labs, and a call from the hospital to schedule the PET CT scan. I had blood drawn on January 12 although, somehow, they lost the results! (The mind reels at how anyone could lose marked vials of blood.) I had the scan on January 14 and then the bloodwork (again!) on January 22. I am scheduled to meet with my oncologist on Monday, January 26, to go over the scan and latest bloodwork.
So, nearly 90 days after we saw that radiation hadn't rendered the rest of the cancer nonactive, we're finally going to decide what to do about it. I hope. I could go in on the 26th and be told that they don't yet have enough diagnostic information. That's not likely but it could happen. Even if it doesn't happen, we still don't have the next course of treatment arranged. As you can tell, I'm hoping my oncologist will have a lot of answers for us.
More on that meeting in the next post.
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