Category Archives: Personal stuff

“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.

Embracing the new normal/today’s visit with the Oncologist

Friday’s blood test on the left; today’s visit with the Coffee Queen, who just happens to be outside my Oncologist’s office, on the right.
Last Friday was my monthly blood test day; not that big a deal anymore as I’ve gotten used to just looking away and staying calm while they stick the needle in, and thankfully I got the best of the best that day. I really should get her name. I did let her know that someday, maybe, I’d get the nerve to actually watch the process.

Normally the blood tests come back around 2:30pm, but not this time. 6:07pm I think? At least it’s not like the “sitting on pins & needles” feeling I used to get, waiting for the results. Things have stabilized and interpreting the results has become more an academic exercise than a source of fear & trepidation. The results looks solid, not quite spectacular though because I’m still a fair amount off my low platelet reading of a few months ago.

Fast-forward to this morning, a 9:10am visit with my Oncologist. Basically, all good news. Rehash of the bone marrow biopsy a few months ago (nothing to see, move along), discussion of platelet levels (since I’m the CALR mutation, she’s OK with the numbers anywhere in the 500s, so no need to up the dosage of the stuff I take that slows me down on the bike), talked about what she thinks is a relatively-high dose of Hydroxyurea that I’m on and her surprise that I tolerate it so well (but truthfully, I know of quite a few on much higher doses), and that there’s no need for a bone marrow biopsy more often than every 5 years, unless there’s a significant change in response to my current medication levels). Checked spleen size, it’s good.

The best news? No more monthly blood tests! I’m on a 3 month schedule, same as office visits. Not really sure why she needs to see me every three months if there’s no change in the blood work, but my theory is that I’m a quick in & out patient that improves efficiency numbers. 🙂

So everything looks pretty good. I can’t do anything about things I can’t do anything about, so I’m going to continue to struggle on big climbs, I’ll continue to have that occasional ache that comes from the inside of my bones, and I’ll continue to have trouble getting much more than 7 hours of sleep (on days when I’d like to). On, and I’ll continue to be dependent upon Allegra (Fenofexidine) for my sanity; if not for that stuff, I would have clawed all my skin off by now, due to the itching caused by the meds. It could be a lot worse, and it is a lot worse for many with my affliction (Essential Thrombocythemia). Many struggle with extreme fatigue, while I’m still out there doing 112 mile Santa Cruz loops on my bike.