Nadir
I guess it's time for a side effects round-up.
Monday (infusion day), as previously reported, I really didn't experience any ill effects outside of a headache. Tuesday was much the same: I spent a lot of the day feeling energetic, kind of fixating on every little twitch but really unable to identify any notable sign of ill health. The only thing I noticed was a little lung tightness trying to take deep breaths that evening.
Wednesday morning, I woke up feeling -- a sort of undefined off, somewhat tired and fuzzy, but basically still normal. I decided to put in a work day, because heck. It was also the day to start injections of Nivestym, a leukocyte growth factor (for restoration of white blood cells). Towards the late afternoon, we went on a moderate walk, and I started fretting a bit: I'm feeling too well, I was promised nausea, dammit. Apparently about 80% of people on my regimen have nausea and vomiting -- my nurse even kind of insisted I should take prophylactic zofran, the "good" anti-nausea drug, even though it causes constipation. Apparently I'm in the lucky 20% because my stomach has been fine and I'd rather not be more than the usual amount of constipated. But anyway, not that lucky because Wednesday night the other side effects started to kick in.
It's probably typical for this therapy to have a delayed response because of the steroids, so this might be the schedule going forward -- infusion Monday, side effects really hitting on Thursday and then gradually diminishing over the following days.
I spent a long time trying to find the right words for the experience of the last couple days. Aches and pains doesn't really seem to quite cut it, nor does fatigue or weakness. It felt like a lot of nerve endings were firing off all over in my flesh -- I guess continuous pangs and shakes might be fairly accurate, along with stiff, swollen neck and fired joints and pounding heart. My skin also started feeling weirdly soft and slippery, and I turned pretty red in the face and neck -- sun sensitivity is a thing, so I think I'm going to be kind of paranoid about sun exposure for a while. Moreover, apparently sun sensitivity can reach backwards in time, because a patch of sunburn I picked up last Saturday on my arm (missed a spot with sunscreen, you can even see the finger strokes whoops haha) decided to unheal, turning scarlet and sore. Cool.
So I spent most of Thursday curled on the couch. I wasn't immediately sure if I should do anything for pain -- NSAIDs are out, and even tylenol is sort of discouraged because it can mask a fever -- but by the afternoon I decided that comfort and sleep is also important, so maximum tylenol it is.
Yesterday was a bit better. I had enough energy to get out for a longish walk, and the pangs had subsided to a more moderate clangor. I started to notice a perpetual bitter taste -- kind of mineral, with a fuzzy tongue -- but thankfully it doesn't seem to be impacting the taste of food. Though unfortunately I've decided I just don't actually like the taste of prune juice.
Ed (Luke's dad, visiting this week from North Carolina) and Luke have been cooking some really nice meals and fired up the grill for summer. On Thursday we splurged on some wild Alaskan salmon. Yum. I will admit I am a little annoyed that it looks like I won't get the chance to become a consumptive waif.
Today there was a Morris gig, dancing along the Embarcadero in SF, and I had enough energy that I decided to tag along. Well, that might have been overly ambitious: I think I may not be in great shape to play flute for a while. Maybe my red blood cells are down a bit, because sitting and standing are fine but a little hypoxia and wind instruments don't seem to be a good match. I spent the first set feeling sort of dissociated, and then in the second set I noticed my face going numb and I got too dizzy to play. Okay, lesson learned. It was still really nice to spend time with the team.
Anyway. I think I'm through the worst for this cycle, though undoubtedly there will be plenty more interesting new experiences to discover as the weeks go by.