Tag Archives: essential thrombocythemia

I haven’t had a woman claw my back like that in a long time!

More doc visits, more tests. Man, if I’d been willing to go to this much trouble when I was racing, with the intent to improve performance, who knows what I could have accomplished! I could have been the next Lance Armstrong! Not.

Wednesday morning was my first-ever visit with a Dermatologist. Not for checking out rogue moles, but to figure out a way to get rid of the itchy skin rashes I’ve had the past year or so. There was some concern they were either a symptom of my ET (Essential Thrombocythemia, a very mild bone marrow cancer) or the medication used to manage. But after taking some samples off my back (the “clawing” I referred to) and examining them under a microscope, it looks more like a simple skin fungus. Who knew.

Because the drug used to clear this up (Lamisil) can tax the liver a bit, I had not only my usual vial of blood drawn, but another two used to figure out how well my liver is actually working. Good news; the average 3-4 drinks I have/year haven’t done any damage. AST, ALT & processing tests all came back in normal range. Not unexpected. The better news is that the increased dosage of Hydroxyurea I’m now on has moved the needle some more, in the right direction, on the Platelet number. That’s what’s shown on the top line in the chart above. Unfortunately, there’s also an expected reduction in WBC & RBC counts, reaffirming that Hydroxyurea is not a performance-enhancing drug. But, trust me on this, EPO is something I hope I never have to make use of, as that would be an indication of some real nasty problems.

Oh, right, since my mom’s reading this- the Dermatologist did check out the various moles & skin discolorations while I was there. Nothing scary. I’m really, really boring. Even that large and gradually-getting-larger one adjacent to my right eye? If I really cared about what it looked like, she could burn it off for me, but hey, how many people’s faces have something that looks like a map showing the gradual spread of the British Empire during colonial times?

Should you tip your Phlebotomist?

How many times up Kings, every Tuesday & Thursday morning, no-matter-what? How many trips to France in July to see part of the Tour de France? Clearly I am a creature of habit and ritual. Guess it makes sense that I’ve now grown somewhat accustomed to my new routine of having blood drawn every two weeks, which I’ve now put into a Friday-morning gig, ride down to Kaiser with Becky & Kevin, do the vampire thing, then enjoy coffee breakfast at Sheri’s Java Shack in the patio.

Having blood drawn used to, well, drain the blood from my face. Not the actual process, but even thinking about it. I thought it something I could never get used to, and wondered, seriously, if I would make the wrong choice if my life depended upon having blood drawn to do it. Well, it turns out you do kinda get used to it. Especially, I think, since I’ve worked it into a routine, something you just do, and even more especially when it’s combined with great coffee.

And I have to admit, the Phlebotomists at Kaiser are really, really good. I’m sure they notice that I’m looking away from them, pretty much right at the wall, during the process. They must have some idea that this guy is a pansy. But, I’m something of a reformed pansy, because I no longer collapse my veins, requiring them to poke and jab until they can get the tiniest trickle of red stuff to flow. I’m able to put my mind somewhere else and find a suitable combination of stressed-out relaxing, that allows the blood to flow.

In all seriousness, a year ago I couldn’t have even written this without feeling faint. Yes, I’m that bad.

So now, all that’s left is the waiting. Waiting for those notifications to pop up on my phone that I have “New Test Results” available from Kaiser. Something that, up to now, I’ve approached with massive fear & trepidation because each new test was potentially further pushing the boundaries of bad news, something seriously wrong with me at a time that I really didn’t feel (and still don’t feel) like there’s anything seriously wrong. But that’s now past; my issue has been defined (Essential Thrombocythemia, triggered by a CALR genetic mutation that has no inheritable characteristics and is not likely to affect lifespan). We’re now in the medicate-and-study-results phase. I’m expecting good results but the worst-possible scenario really isn’t that bad; it would simply mean I’d need to increase the dosage of Hydroxyurea to knock down those pesky platelets some more.

That “open book” part of my life? Obviously I’m not a conspiracy sort of person, nor secretive about my life. I don’t use anonymous names in on-line forums. I don’t live in fear of Big Brother using my health data against me. Then again, my generation (I’m 61) went to college at a time when your social security number was used as your basic identification, not something you guard with your life as people do these days. But if that’s the case, then how come so many people my age are hopelessly-addicted to conspiracy theories and Fox news? Yes Mom and Robert, that message is for you… 🙂 –MikeJ

Added 4:20pm- Got the results back. Continuing positive trend in platelet count (meaning it’s going down). As expected, also some reduction in Hematocrit and White blood cell count, a slight negative side-effect of Hydroxyurea doing its job. It’s essentially the opposite of EPO.  I’ll give these test results a C+. That’s better than it sounds, because I’d say my first results were a D-, the latter tests a C-. The trend is in the right direction!