[I wrote this post on Sunday but wanted to wait for my WBC count before posting it. WBC is 20.6k as per this past Monday so basically on Saturday I made the jump from 1.9 to 20.6k, and so the post can be published now.]
Cycle 2 is quickly coming to an end, bringing overall progress to 25%. C02D08 (ie. Cycle 2, Day 8 — this is what I’ll use from on, advantage torrent users) passed fine, some side effects (this time: acid reflux) the next day.
But boy, I couldn’t get this G-CSF stuff in order, again. I just woke up afternoon of a 2-day long bone pain ride, 1 day of which I was basically unable to move. Worse than last time (MUCH worse), this time somehow it all concentrated on my pelvis and thighs, and at some point (around Saturday noon) I had to start taking semisynthetic opioid (druggie!) to somehow manage and not go insane. Last time I could do with Paracetamol and Ibuprofen combined, this time it was a double dose of long-effect Oxycodone, plus short-effect Oxycodone, plus Paracetamol. And it didn’t take away the pain, either, only reduced it. Results: screaming pain (yes), staying a full day in the bathroom (I couldn’t move any more after getting out the tub; luckily my loving wife brought me a mattress and blankets), losing 4 kilos in 1 day as I couldn’t eat or drink, and I also sweated a lot (interestingly: through my head only, I could feel sweat drops forming in 1-2 seconds and running down my head when I concentrated on breathing the pain out, relaxing muscles, etc.; if I had any strength, I’d have filmed it). So if last time was a rabbit hole, this was a rabbit fucking dungeon. Don’t try it at home.
But BUT BUT: as last time, the pain diminished by now, I slept half a day, I can move around fine (I have some numbness in both my legs – after all, I didn’t move them for a day), and next time we’ll be smarter.
(Side note on where I probably fucked up for next time: based on discussion with my main doctor, I should have stopped taking the subcutaneous injections right when the pain started. I didn’t stop, I called the hospital on Thrsday and went in for a blood check on Friday. Blood check result was not good (wbc 1.9, way below normal), so the doc on duty couldn’t tell me otherwise than to keep taking the injections, which I did — and that proved a mistake. The problem here I think is that Filgrastim, the GCSF injection affects wbc only indirectly: it only stimulates white blood cell generation (the TLA stands for: Granulocyte Stimulating Factor, there it is). So bone pain comes first, raised wbc comes second… and if you show a doctor a wbc level below normal, they will have no choice but to tell youto continue with the subcoutan injections.)
One more note: Juli has this worse than me. Very quickly, my brain shut Saturday out. I do know it was a rough day, and of course I went through it, but by now I can’t remember how the pain was. She had to see the whole thing though. Support persons are awesome.