Category Archives: Personal stuff

It’s been a while, lots going on

At least we can start with some pretty video of the usual place, West Old LaHonda. This has been an interesting year; “Winter” wasn’t all that bad, but Spring has been much colder than usual, at least on the Tuesday & Thursday-morning rides. Cold enough that it caught me off guard a bit with my Raynauds (a condition that shuts off blood circulation to fingers and toes when cold or stressed), so finally I had to seek treatment for chillblains gone wild.

The Kaiser blood lab
It’s not much fun trying to explain to a new GP Doc at Kaiser that you have something (Raynauds) that some don’t think a real thing, probably largely because it’s largely women who get it, so it ends up being associated with things not typically associated with men. Incorrectly, they’ll associate with being an emotional thing, or maybe driven by hormones. Which, of course, is really a sad state of affairs. She literally told me she didn’t think I had “real” Raynauds because it’s a women’s thing. I had better things to do Thursday than feel kind of imprisoned for a couple hours by Kaiser. But, in the end, I got a bunch of tests done to show my Raynaud’s isn’t related to any sort of auto-immune issues (like Lupus), and a doctor who has learned a but more about Raynauds.

Funny to think that, just a few years ago, I wouldn’t have made an appointment to deal with something like this in the first place, due to my extreme fear of having blood drawn. Now, it’s just this thing I have to do, because of my diagnosis three years ago with Essential Thrombocythemia, a mild bone-marrow cancer that causes my body to make too many platelets. Hard to believe I have no real issues with blood draws anymore. I still can’t look at the needle being inserted, but at least I’ve gotten to the point where I don’t mind seeing the vials of blood after.

More time with the Vampires today; more test results from the lab

My journey with essential thrombocythemia, by the numbers! I’m supposed to get quarterly lab work to check on my mild bone marrow cancer (which sounds a lot scarier than it really is), but things got kind of crazy so the test today was about a month late. Not that big a deal, since there’s never any evidence of something bad going on (no symptoms), and who wants to visit a hospital right now anyway?

But this set of labwork was actually a bit better than expected. The main issue with my disease is my bone marrow wanting to produce massive numbers of platelets. Platelets are what help your blood to clot, which is good, if, say, someone’s hacked off your arm like in Monty Python and the Holy Grail. Not so good in normal situations though, because too many platelets can cause blood clots when and where you don’t need them. Thrombosis events, they call them, such as heart attacks, strokes, that sort of thing. Thankfully, besides having a really rare bone marrow cancer, I have a subset of that bone marrow cancer that creates platelets that don’t clot very well. So I can have twice normal and not have an issue. Still, since I’m over 60 (65 in three weeks so maybe I get a Covid vaccination!), they watch this stuff carefully.

The good news is that my platelets have finally gotten down below 600 again. Had to increase the meds a bit to get there, but no side effects from the meds so… all is good. Most importantly, hematocrit level is stable! Why is that important? Because hematocrit is a measure of your blood’s ability to carry oxygen. If you’re into cycling up big mountains (and who isn’t?), that’s a really big deal.

All sorts of other tests that showed nothing very interesting, everything still floating within normal range, no odd trends. Perhaps most important is that the LDH test, which measures an enzyme created when certain types of cells die off in a way that maybe the shouldn’t be, is still within normal range. Significant changes there would mean another bone marrow biopsy, to take a look inside and see what’s going on. In general, you would want to avoid a bone marrow biopsy. Picture someone using a hammer and punch, and your bone is the target. Yeah, fun times! But after what my wife went through for her colonoscopy the other day, I think I’ll take the bone marrow biopsy. She had to switch to a fluid diet for a couple days and your body doesn’t like that. Let’s just say that bone marrow biopsies don’t cause leaks.