Tag Archives: essential thrombocythemia

“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.

Update on my journey with Essential Thrombocythemia

Oncology/Infusion Clinic at Kaiser Redwood City. The “EXIT” sign at the end of the hall seems symbolic yet wasn’t noticed when I took the photo this morning.

Why. Not that there’s an alternative, but that first time I met with my Oncologist/Hematologist, and you’re in a part of the facility you’d never been before, or maybe you walked past and saw gaunt, pale people, generally a lot older than yourself, usually with someone else who’d driven them. You had maybe lost a family member who’d been taken care of in this part of the hospital. And now, without warning, you are there. Why.

On my first visit, I didn’t pick up on much, because I was so, well, scared. Yeah, I know, guys aren’t supposed to be scared. But I was. In a period less than 24 hours I’d gone from having a blood test to confirm an anomaly to emailing my GP about the results to having an appointment with an Oncologist the next morning. No time to intellectualize anything or pay attention to my surroundings. I was in a place I was scared to death of being.

That was just over 6 months ago. Since then I’ve gotten past my severe, primal-fear sort of thing over having blood drawn. A weekly blood test didn’t give me much choice.

Now, on my third visit with my Oncologist, I begin to notice things. The Oncology/Infusion clinic is the last department in the wing. Only an exit door beyond. I didn’t attach any symbolic meaning to the exit sign when I took the picture, but now…

Ironically, it seems to have taken a chronic illness to cure me of my white-coat blood-pressure-spiking syndrome!

The nurse that took my weight, blood pressure and history. Whatever I said, she looked for a way to be nice and reassuring. I didn’t need a lot of empathy today; it seemed almost out of place, wasted on someone not that bad off. Where was she on my first visit, when I was terrified? Maybe she was there, and I was beyond reach.

Looking back upon my admittedly-brief journey so far with my mild chronic form of bone marrow cancer, it’s that first 10 days post-diagnosis that stand out, that will always stand out as a soul-searching, potentially life-changing and exceptionally frightening experience. The only remotely-similar time in my life was when my son had his first major seizure and I’m at the hospital watching the doctors spend two hours trying to stop his convulsing, and in two hours an awful lot of possibilities go through your mind.

Today, exactly 7 months after the first test showing something screwy, I’m in a very different place. I find myself in a sort of competition to get my “numbers” (blood values) to a better place. I’ve come to understand the contradiction of a disease that’s incurable but can be managed. I have moved from my disease defining me to me defining the disease. I have even made progress on my “white coat syndrome” where I would spike my blood pressure on a visit to the doctor.

There remains one major, future-defining test, coming up sometime in February. That’s when I undergo a bone marrow biopsy, the only way to find out if my bone marrow issue shows elements of morphing into something that can progress beyond chronic, making mortality issues as real as they are feared. If you feel fine (which I do), do you really want to know? But in the worst-case scenario there are choices to be made, and risky treatment options (stem-cell transplants) that could make sense but would be crazy to consider now.

I am, all things considered, in a pretty good place. In a bizarre way I can say that I have my health, given that there are few limits on what I can do, and I likely remain in better shape that most people a bit younger. I have a great family, I have found support and solace in two groups for people with Essential Thrombocythemia on Facebook (“Essential Thrombocythemia” and “Essential Thrombocythemia Support Group”), I have “remembered” my faith in God I have greater appreciation for the trials faced by others.

My daughter Becky, reading this, thought it was a bit morbid and depressing, especially considering that I’m responding wonderfully to my medication and it would really be tough to have better results than my tests this past Friday showed. My doctor’s appointment went very well too, as she noted there is no longer any enlargement of my spleen. I am virtually symptom-free; I could not ask for a better place to be than where I am right now. But that doesn’t re-write the story; this is about how I got to where I am, and where I am heading.

The plan (remember, there’s always a plan) is to live long enough to definitively prove that you can literally bore people to death by repeated ramblings like this one. That will be tough to prove without being around for a very, very long time. That’s the plan. 🙂  –Mike–