Tag Archives: essential thrombocythemia

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!

When your Doctor finds something you weren’t looking for

Me and a subset of my support network (Kevin center, Becky right), having coffee at Sheri’s Java Shack last Friday after my most-recent blood test. Turned out we had reason to smile. Good thing, that!

A few weeks ago I embarked on a new journey, departing from my long-time quest to climb faster by figuring out what has been causing my breathing issues, to dealing with an anomaly in a blood test… a very-high platelet count. Out of maybe 40 different tests run on me, 37 came out beautifully, indications of someone in very good health. 2 or 3 did not, which, I’ll admit, put me into a restless state of mind. The first re-check came back worse, quickly adding a new Doctor to my portfolio, a Hematologist/Oncologist. The fear and trepidation of each incoming blood test, prior to my visit with the Hematologist, was stunning. For the first time I can remember, I felt like I had something I couldn’t fight using my wits, intelligence or strength. A really scary feeling!

New test results continued to arrive on my phone even later that same day, as if someone was deliberately trying to torture me. It made for a very rough weekend. In fact, my phone let me know of a new test result just as my daughter and I were getting ready to ride away from the shop that Friday night. I didn’t check the results until later, but as we started the ride home, we came across a down-on-his-luck guy pushing a shopping cart with his belongings, asking if we knew where a soup kitchen was. We said no (which was truthful) and moved on. 10 seconds later I turned around and headed back to him, checking on my phone to see if I could find one. Nothing open that late. I had $14 in my wallet; I took out $10 and gave it to him. I don’t know why. I just knew it was something I should do. It didn’t make me feel better, but one of my core values seemed to have become more important. All those little situations you don’t give much thought to, where what you do might make the world just a little tiny bit better, or a little tiny bit worse. Always try to choose the better.

The results of that evening’s incoming test were worse than those previous. There was this feeling, a totally irrational feeling, that the “worse” numbers on the retest might be an indication of something bad happening really fast. That feeling had no basis outside of an amateur looking at numbers without having any real context to understand them. But I resolved to handle things better, and besides, I was now on a medication (Hydroxyurea) that has a history of working very well dealing with my specific issue (too many platelets). Give it a chance. And yes, pray.

Some of the fear subsided as I began my meds, and even more so as I continued to ride well, improve even, completing the 100 mile Sequoia Century with my son in fine form. By the time two weeks had passed, I felt OK with things, I was ready for that next test. So I went in Friday morning, knowing I’d be getting those pesky emails later in the day, emails with test results that had the potential to wreck my weekend. I went with Becky and Kevin (seen in the photo) and had a truly good feeling about things, about not just the tests themselves but the future in general.

And at 2:48pm the results came in. Platelets decreased from 3x normal to just 2, with the Doctor hopeful that further improvement will be seen at the current relatively-low dose of Hydroxyurea. Thoughts of things going seriously wrong completely dispelled. Many thanks to my family (kids Becky & Kevin, wife Karen, dog Jack, cats Zack & Zoey), extended family, Chain Reaction employees and customers who have helped keep my spirits up. It’s time to settle in for what’s likely to be a very long journey (in general, scary as “bone marrow” issues are, a diagnosis of essential thrombocythemia does not typically affect lifespan but becomes a long-term managed condition).