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.


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