GEMZAR, O DARK LORD OF THE
KINGDOM OF THROMBOCYTOPENIA! I beseech thee!
Permit me to put this steely blade
to my most unholy and hirsute axilla or cast me out
of the land of all that are cleanly-shaven!
What's this one been like? I have to say that it's been really easy to take in some ways. No hair loss. The evening following treatment, I would feel a little poisoned and might have some queasiness and fatigue, but after that, it's been pretty doable. Sometimes, I felt easily-winded due to low red blood cell counts, but aside from the bruises and petechiae all over my body, I'm rocking a Jean Seberg as Joan of Arc look.
The first three months on Carbogem went off without a hitch. I was able to get my two weeks on/one week off and it kicked the crap out of my tumors. I hadn't seen improved disease like that since maybe my first three cycles of Taxol in 2011. Then, it started to work too well. Treatments were withheld due to plummeting white blood cell counts, countered by three daily growth factor shots called Neupogen, which worked really well but, now that my bone marrow is completely wrung out, would give me violent bone pain about a fifteen minutes later. The sensation is not unlike having your pelvic bones attached to a car battery and being given a few jarring jolts of electricity every few minutes for about 30 minutes.
Eventually, I found myself only getting treated about once a month with the lowest doses of chemo possible. The white blood cells would be fine, but my platelet count would be absolutely miserable, and there's nothing that can help that. I'd get turned away to try yet again next week. Not having enough platelets means a long walk leaves your ankles and calves sprinkled with broken blood vessels. It means not shaving unless you have time to nurse your nicked knees for a long time before walking out the door. To my dancer friends, it means demonstrating the snap of a tightly connected passé results in a purple bloom inside your base leg.
During this time of recuperation, I feel that burning pressure in my back and under my rib cage mounting. Feels like the hot muzzle of a pistol that is hard to ignore some days and I have a hard time keeping my anxiety in check. Some nerve gets pinched and I discover an unrelenting twitch in my right eyelid and searing sciatic pain. Then, when my blood is strong enough for a full treatment again, I could feel the pain in my liver subside within days.
Scans set bright (or shall I say, dark) and early for Friday at 7AM. Not sure what type of treatment is on the table next. My bone marrow is so beat up that it takes longer and longer to regenerate after each whack of chemicals, so chemo isn't ideal in that respect. There's a brand new treatment called Ibrance that is taken with letrozole, but I haven't had the best of luck with hormonal therapies thus far. I'm a little dubious but willing to jump back into those supersonic hot flashes if I need to. I told my oncologist that I want to pursue chemoembolization. I am also looking into some clinical trials that would have me traveling elsewhere -- I can't believe they don't offer them in Chicago. Seriously. Thanks, Obama.
More to come hopefully sooner than later!