Questions, Questions, and More Questions …
[Spoiler: I’m going to say this at the end of this post: “If anyone out there has any suggestions about oncologists, treatment centers, insurances, tactics or strategies, I’m requesting them from everyone within the sound of my voice.”]
I’ve been on the edge of my seat about my current PSA level and was expecting one of these possibilities: lower (encouraging), the same (disappointing), or higher (very disappointing) — I hadn’t counted on a fourth possibility: we just don’t know. But that’s just what happened. For the first time since before my diagnosis PSA wasn’t ordered as part of my blood work. My oncologist said “it’s too early” after starting the terribly-named Xtandi. Which seems very weird.
Why would any oncologist, at this juncture, not want to know the PSA number? Or not want me to know? And then thinking about it, since testosterone (more on testosterone in a future post) is a key hormone in judging the health of my prostate cancer cells, why was it only measured when I made a special request to have it included in the blood work order?
In other news, my testosterone number was 10, up from the “less than 7” from the previous two blood-works. Is that meaningful? If so, what might it mean? For the second time in a row my alkaline phosphatase has been in the normal range (nigh normal, but normal) and it’s been more or less steadily declining since I started chemo. I’m pretty sure my alkaline phosphatase level indicates how much my bones are being damaged by my cancer clumps, so I’m taking that as good news.
In other news, after a full four weeks my insurance company has finally completed the appeal of their denial for a consultation at Sloan Kettering (the one that costs $2,750 if you try to pay out of pocket) and (perhaps unsurprisingly) affirmed their previous denial. That’s four weeks of snubbing my beloved Primary Care Physician and actually scheduling peer-to-peer review calls and then just not showing up. So, there’s a whole other raft of questions — will we get different insurance? Will we get medicare by applying for disability? Will any of the doctors or cancer centers I’ve heard about start managing my care? I realize I’ve been hoping I wouldn’t have to time looking for and evaluating other options, since maybe my current oncologist would get some good results, or Sloan Kettering would give good consultation. So, I’m going to have to change that tune, and, guess what? I don’t want to.
If anyone out there has any suggestions about oncologists, treatment centers, insurances, tactics or strategies, I’m requesting them from everyone within the sound of my voice.
Not that I’m in the mood to shed any tears at all, but here’s a link to ? and the Mysterians’ extremely fabulous song, “96 Tears” (bonus content: perfectly fabulous psychedelic video!) https://www.youtube.com/watch?v=bOCOMYGIfUQ
