It’s Sunday, 59 ATN and 19 days since the start of chemo.
It’s been quite a weekend. Or perhaps quite a non-weekend since I spent a good chunk of it sleeping. Its hard to say if the side-effects are worse this time around, but on Friday and Saturday it definitely felt as if I was coming down with the flu, complete with body aches. Apparently this is what one FOLFOX patient called the “yuck” feeling – “an overall feeling of malaise, a crappy lousy feeling that makes you feel bad all over even without the nausea” and “you feel the flu coming on but don’t get the flu.” Yep that pretty much summed up Friday and Saturday. Except I had a touch of nausea as well which the Compazine mostly managed. And today I discovered Tylenol. (Ok, it’s more like I read through the “OTC Chemo Kit” list. Again. Give me a break, I officially have chemo brain now! In any case it said to take Tylenol for fever or body aches.) No fever, thankfully, or I might actually have caught the flu or maybe even COVID-Delta, and the Tylenol took the edge of the body aches so I’m now just feeling tired but otherwise good.
When I met with the medical oncologist on Tuesday for the pre-infusion check-in she mentioned that for many patients the first infusion is the worse and some symptoms get better as the body adapts. Well apparently my body didn’t quite get the message (it was probably delivered via US Mail), but I hope she’s right and things get better (or at least stabilize) with the next infusion.
(It’s also occurred to me that my vampiric side has had it with this whole wake-up-with-the-sun thing and is forcing me to sleep more. Odd how I only feel crappy during the day and generally feel better at night…)
The nausea and tiredness aside, the “first-bite jaw pain” and cold-induced neuropathy seem to be taking a similar course as in infusion #1 and are starting to subside. I didn’t do the ice cream test like I did in infusion #1 – “If I can grab the ice cream container and it doesn’t hurt I can eat it” – since it wasn’t that hot out today, but instead indulged in a mango mochi from Hong Kong Bakery in downtown Mountain View. It wasn’t cold but it did help to confirm that the first-bite pain is subsiding. The sacrifices we need to make in the name of medical science! Also, I’m not sure if this is good, bad, or just a symptom of chemo-brain, but I find that I frequently forget that I have the first-bite pain until I take the first bite. Then – “Ow! Ow! Ow! Oh yeah, I was supposed to take a small bite.”
A final side-effect I’ve identified is taste change that appears to kick in the day of and after the infusion. Actually it appears to be very specific to the Costco Kale Salad. Maybe its because I have it almost every night I know what its supposed to taste like. A couple weeks ago the day after infusion #1 my helping of it tasted a little…off. It was the last of a bag so I figured maybe it was going a little bad. Naturally I ate it anyway (“That which doesn’t kill you makes you stronger” and all that. Besides if it does kill me then no more chemo 🙂). But on Wednesday I had a fresh bag of kale salad from Costco and it had that same off taste. Same on Thursday. Then tonight it tasted like that kale salad I know and love. Everything else tastes fine, so its a very specific taste change. Maybe whoever came up with the FOLFOX regimen has it out for kale farmers?
I’d planned to include a few more things in this post, such as the effect FOLFOX is having on my blood counts (neutrophils down), and also the somewhat laughable set of medications needed to manage side-effects, and the side-effects of the medications used to treat side-effects, and the medications needed to manage the side-effects of the…you get the idea. But that’ll have to wait for another day since I have a strange desire to go to sleep again 😴…