G.I. No

Wednesday before last, I went through an abrupt gastrointestinal shift. Two and a half weeks after the preceding infusion, I started experiencing nausea, diarrhea, and considerable loss of appetite. I hadn’t experienced any of these symptoms (other than minor nausea) with chemo, previously.

The following night was a tumultuously sleepless gastropocalypse with intense, recurring bouts of diarrhea. Nausea got increasingly worse, until I eventually vomited multiple times, in rapid-fire succession. I don’t vomit very often (it’s been years), but I just don’t recall it ever being this … extreme. I got hot and sweaty, and my eyes and nose were both streaming. My throat was sore for hours afterwards, like everything had been chafed raw inside.

Delirious at 4:30am, desperate for a distraction, I stumbled upon “Believercise.” And verily, it didst suffice to bemuse me, and my soul was calmed. Somewhat.


I called Fred Hutch later that morning and described my night. They were immediately concerned, and they had me come in and do bloodwork. My magnesium was very low, so they gave me that via IV, alongside standard fluids to keep me hydrated. The question was: what happened? They said it was unlikely that my gastropocalypse was related to the last chemo infusion, which had occurred on Aug 19. So they had me provide a stool sample, which they tested for 22 different pathogens that might have caused my terrible night.

But the test returned negative for all of those pathogens, and as the days went by, the diarrhea kept happening (no more vomiting, however). Each evening, my appetite disappeared and I could only eat crackers. When I came in for my rescheduled chemo infusion on Sept 11, after they heard about the ongoing issues, they decided to cancel the infusion once again. The nurse explained they’re very hesitant to administer FOLFIRINOX (particularly Irinotecan) to a patient going through constant diarrhea — “we don’t want to be responsible for sending you to the ER,” she told me. Since I tested negative for the pathogens, their current hypothesis is that I had a delayed reaction to chemo. However, this is not common; they’re running an additional test to see if I might be prone to such things, (via UGT1A1or DPYD), and I’ll hear back on that early next week.

So, everything is pushed out another week, with the final chemo infusion now scheduled to happen on Nov 14. This throws my work calendar out of whack (again) and I need to follow up on appointments that will no longer work, schedule-wise. While that’s not fun, I do appreciate my care team’s cautious approach: they’re looking out for me.

Meanwhile, my neutrophils are back up in acceptable range … after mysteriously spiking just 3 days after they were so low. And the diarrhea stopped as of last night. Fingers crossed, I’m good to go for the next infusion, now scheduled for Sept 19.

And while my appetite has returned, I’m noticing strange cravings for sweet things, and carbohydrates. I have REALLY been wanting mashed potatoes lately. No idea why.

9 thoughts on “G.I. No

  1. Jonathan–really sorry to hear about this. Interestingly, Gretchen was supposed to have her third of the four infusions of “Red Devil” (Adriamycin) tomorrow. But her blood labs on Friday showed problems with kidney function so she has been given anti-biotics and steroids to try to counter what they think is her body going into inflammation over-drive due to the Keytruda (immunotherapy). She had been feeling worse and worse and was wondering what the hell was going on. Already somewhat better today. It is a journey for all of you coping with cancer and chemo…. keep after it, brother!

  2. You definitely were put through the ringer. Glad to hear you may have turned the corner on this latest shit show. As far as the believercise, well that is another variation of special.

  3. Jonathan, Ugh— sending you good vibes brother. Hey, if you need assistance with transportation, hit me up. I’ve got some commitments during the week, but usually free mornings before 11am and afternoons after 1pm. DM me if you need my mobile #.

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