Tag Archives: essential thrombocythemia

Doctor Visit & Thursday’s ride (late report)

From Thursday’s ride, yet another wet day on Skyline. Pretty pictures yes, but what a mess it makes of your bike!

Wednesday’s quarterly visit to my Hematologist/Oncologist at Kaiser-
I’d had my blood tests done a couple weeks prior so knew there weren’t going to be any real surprises, with everything looking very stable. And in fact there really wasn’t much to talk about because things are looking about as good as they can for someone with my very unusual/rare form of mild bone marrow cancer (Essential Thrombocythemia).

Warning: Next paragraph includes semi-technical medical jargon
My primary concern was with my gradually-declining Hematocrit which, at 40% now, is dropping below what I’d like to see. At 40% you’re not carrying as much oxygen to your muscles as you would be at my normal 44-45%. We discussed the things that affect Hematocrit level, including my high MCV (red blood cell volume) which is my body’s attempt to compensate for the decrease in RBCs (red blood cells) caused by the medication I have to take. It’s interesting how she thinks the med (hydroxyurea) “causes” the increased MCV while I’m pretty sure what happens, if you’re athletic, is that your body reacts to the declining RBCs and rewires itself a bit to get the Hematocrit to its needed level. I have a feeling the only doctors who’d really have a handle on this stuff are those involved in doping.

I think there’s potential for some interesting medical research here, but how being athletic changes responses to cancers and medicine effects doesn’t seem to be on anyone’s agenda. Pretty sure my Doctor thinks it’s a bit odd that this is of more interest to me than the fact that, according to her, I’m doing better than 99% of her patients on this med. Worse, she just issued me a challenge. What do I have to do to be the very best? 🙂

Thursday’s bike ride-
Yet another wet morning on Skyline! 4 of us; myself, both Kevins and Tom. Took it easy through the park, trying to give Kevin’s (younger Kevin) knee a chance to rest. Still no great views from West Old LaHonda; some day this morning marine layer will finally go someplace else.

“Definitely” Response from my pulmonologist when I requested more tests. A good thing, that.

Above is the video I sent to my pulmonologist, asking for a retest of my lung function almost exactly a year after the last one, the test that eventually led me to yet another test that showed something I didn’t want to find, a mild bone marrow cancer called Essential Thrombocythemia. That discovery put an end to finding a solution for my breathing issues, because it seemed there were more important things to put in order. That scary “C” word, concerned about bigger things than how fast I can ride up a hill.

But as time went on, after many, many more tests, and, finally, a bone marrow biopsy a couple months ago that completely put to rest any fear of an early demise, it become increasingly clear that my breathing issues were once again taking center stage when on my bike. But would my pulmonologist agree? After all, he and my GP were wondering why, if my VO2max measurement was 140% of normal for someone my age, I was having an issue. I get where they were coming from, but my frustration has been building as I’m questioning if I can even get under 30 minutes climbing Kings this year. The simple truth is, the average 62 year old is in really awful shape, so any comparison to “average” just isn’t relevant.

And last year, I don’t think my doctors really understood what it’s like to be riding near me, hearing my continuous labored breathing on a climb. So, I made the short video above. It shows what I sound like at a moderate, not strenuous, pace. I explained that, once the road tilts upward, once my power goes above 220 watts or heart rate above 140, I can’t talk, I can’t even take a drink from my water bottle without falling apart. Most people breathing like that might keep it up for a pretty short time. I can do this for half an hour. More if I have to.

It was enough to convince the doctor for a re-test, and to try something different from the Qvar/Albuterol/Singulair combination I’m presently on. It’s been just over a year since the last test (April 18, 2017). My daughter, Becky, is a bit concerned that new tests might being up something new & scary, like last time, but I told her, at this point, my attitude is “bring it on!” I can’t fight or fix what I don’t know about. I’m looking forward to May 21st, when I go into the “glass booth” again.

Another important date is coming up. May 24th will be the one-year anniversary of what I consider the darkest week of my life. The day I got hit, really hard & fast, by the news that there was an issue with my bone marrow. I put on a pretty good face most of the time, but until I discovered a relevant Facebook group (yes, Facebook is good for something!) dealing with Essential Thrombocythemia, and learned that people live with this rather than die from, I had some serious doubts about the future. So, Thursday, May 24th, I’m going to have a “breakfast at Alice’s” version of the Thursday-morning ride, to celebrate.

OK, what about last Thursday’s ride? Yes, I did ride, along with Kevin (kid) and Karen. I had hoped I’d continue to feel like I had on Tuesday’s ride, attacking the climbs rather than capitulating, but it was not to be. I was a slug heading up Kings. I did recover some on Skyline, but I never had that sense of “pushing myself hard is fun!” that I had Tuesday. Maybe it was just a high-gravity day.