That’s a winning blog post title right there …

Yesterday was pump disconnect day; I went in to Fred Hutch and they removed the pump that had been slowly injecting 5FU chemo into my system. I read a lot of stories about how pump disconnect day can be really hard; many in the Colontown community said they requested IV fluids to help ease the process. I didn’t request any extra fluids and I didn’t really have any problems. My main issue was fatigue and brain fog — no doubt caused by steroid-induced lack of sleep.

After they removed the pump, another nurse taught me how to self-administer Nivestym shots. These shots help keep white blood cell counts up (counteracting the chemo process, which drives them down). These shots go in subcutaneously — into the fat below skin. After losing weight earlier this year, the only extra fat I have to work with is in my belly. My instructions are to give myself the shot 5 nights in a row (starting tonight), but you need to do it in different places each time. I used a little mole down in the bottom right side of my belly as a starting point; I’ll work around in a semi-circle on subsequent nights. I have never given myself a shot before, but it wasn’t too bad.

I’m keeping track of these shots on the kitchen whiteboard, along with other chemo quick reference. Really hoping I can actually memorize how to pronounce some of the chemo drug names.

Last night was hard. I woke up with a start at 1:30am, feeling nauseated, heart racing. As it turns out, this was the weird mix of “body panic” symptoms that precede middle-of-the-night bowel movements (something that I never experienced before this year). Unfortunately I wasn’t able to get back to sleep; I ended up having three bowel movements over the next four hours — with an ongoing mix of mild nausea, chills, and hard-to-explain sensations that prevented me from going back to sleep.

This left me very muddled and confused this morning; I was in no state to work, so I requested the rest of the week off. I left a voicemail for the nurse explaining that I am struggling with lack of sleep. They prescribed me olanzapine to help with sleep — I’ll start on that tonight. Also, the middle-of-night bowel movements really need to be happening during waking hours— they recommended miralax for that (although, need to proceed with caution).

It is so much to keep track of. I am tired and hoping for a better night’s sleep tonight.

I’ll close by noting that I don’t seem to be having the common FOLFIRINOX side effects (extreme nausea, diarrhea, neuropathy), which underscores how everyone reacts to chemo in a different way.