This post is long over due. A lot has changed since my last entry. After months of low blood counts, I hit an all time low in July with my hemoglobin clocking in at 6.6. That's about half of normal. That's like,"she could have major organ failure at any time" levels. I felt tired, but not any more so than usual. Still schlepped it to work everyday, AND Keith and I rode our bikes about 4 miles to see the fireworks on 4th of July. What can I say? I'm a champion.
Due to dangerously low counts, another blood transfusion ensued. Thank you to the person in Arizona that helped to keep all my systems functioning for another couple of weeks. (Keith and I like to make a note of where - which state - the blood I get comes from, and wildly conjecture about, and do hilarious imitations of, the imagined person that donated it.)
Finally, my Dr decided that enough was enough, that something had to give, and has cut my Sprycel dosage in half. Whereas I was taking 100mg daily, I am now swallowing pills half that size. And...drum roll please...on one front, at least, it seems to be working. I've had two follow up appointments since changing dosage, and both my platelets and my hemoglobin have inched their way up. Incrementally. Side effects so far seem to have been regaining a little bit of color in my face and lips, and Keith not checking my breathing every morning when he wakes up to make sure that I'm still alive. It's not a big "ta-da" moment yet, but most definitely, it feels like the sun is peeking out from behind the clouds and shining on me, if only a little bit.
My BCR-ABL (cancer levels) are still higher than I would like seeing as how I'm 16 months post diagnosis. Most Dr's would like to see your levels at .01 by 18 months, which is a milestone of treatment referred to as "major molecular response". Considering that mine was 9.8% when last measured on 7/2/2015, I most likely won't hit that deadline. As long as I continue to go down, and do not have a spike on the lowered dosage, I'll be happy.
All in all, thank goodness my blood counts are beginning to stabilize, I'm feeling a bit more energetic (Keith and I went kayaking last weekend), and life is becoming a bit more normal. Don't get me wrong, I'm still on the two week blood draw schedule. (I'm there so much that the receptionist knows my name on sight.) And my blood counts are still nowhere near "normal" - if a Dr that didn't know my history read my labs, he'd probably poop his pants and wonder why I haven't been hospitalized - but I'm making forward/upward/positive progress, and that's more than I've been able to say for a long time.
Forecast - Mostly Sunny.
Hurray.
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