ROUND 1 – 14 January 2020
The chemotherapy treatment began in full force with the FOLFIRINOX branded combination of drugs:
- folinic acid (also called leucovorin, calcium folinate or FA)
- fluorouracil (also called 5FU)
- irinotecan
- oxaliplatin
Considering the advanced and widespread state of my disease, the oncologist felt it was necessary to use this very aggressive drug combination, even though I was in pretty rough shape. At that point I had already dropped from 63 kg (140 pounds) to 57 kg (126 pounds) in less than a month and that trend was accelerating.
The nursing staff in the infusion room were absolutely delightful. They explained all sorts of new details that neither the doctor nor the physicians assistants had thought to tell us, which is funny considering one of the PAs spent almost two hours telling us stuff and giving us a giant binder full of paper that I bet we’ve looked at once since then. The PA onboarding was a nice idea, but the nursing staff met me in the desert of the real world and really explained how it worked. This is not surprising to me. It is frustrating though.
Some of the side effects of the treatment kicked almost immediately, which I was surprised by. Sensitivity to cold, for example, came on pretty quick. I can’t really eat or drink cold (or really even cool) food or drink for 5-6 days after chemo. If I hold something cold in my hands, or go outside when it’s cold without gloves and warmers, my hands will tingle as if I’ve lost all blood flow in my hands a.k.a. my hands fell asleep. Neither sensation is comfortable AT ALL.
I also started getting fuzzy headed, like the Flowers for Algernon feeling you get from a giant dose of Benadryl, and I really couldn’t think straight. Finally, the fluorouracil is so toxic they 1) have to drip it in to me over two days via a pump that looks like an Ood ball and 2) they seriously gave us a hazmat-like suit for clean up if the Ood ball pump ever breaks.
The real pump is the less cool “Homepump Eclipse Disposable Elastomeric Infusion Device“. I have brought up the similarities between the pump and the Ood ball to every nurse who has connected one to me. Everyone in that unit will know about the Ood by the time I’m done with my treatment 😉
21 JANUARY 2020
This was my first “off” week, meaning no chemo this week. My weight has dropped to 52 kg (115 pounds), meaning I’d lost 3 kg in a week. There’s approximately 2.2 pounds in a kilogram, so that’s almost 7 pounds, to put it in perspective. The oncologist agreed to put me on TPN. What they didn’t tell us is the TPN was only at half strength, as they have to start you out slow (apparently). You might think I would know this, since I’ve done TPN twice before. But I was a kid in those days.
28 January 2020
Time for my second round of chemo! Except now that they are just now bumping up the TPN calories to something that might actually sustain me, the oncologist is like, ha ha, you have to stop the TPN for 2 days while we give you chemo through the one port you have. At this point, I’d dropped to 49 kg (107 pounds).
We refused the chemo treatment until they could figure out SOME WAY to give me TPN and chemo at the same time.
ROUND 2 – 29 January 2020
I was squeezed in to the schedule early in the day to have a PICC line inserted in my left arm. The whole thing took less than an hour start to finish, and no sedation was required. Now it was possible for me to be on both TPN and receive chemo. Let the poisoning commence! Here’s Jessica and I, happy to have resolved yet another complication.
At this point, I’d dropped around 8 kg (almost 18 pounds) in two weeks. This was the low point. I wouldn’t say that what you think of as “Jeremy” was really “present” at this point. I survived the chemo, and thanks to the higher calorie TPN, stopped dropping weight, and slowly, added a little back.
3 February 2020
I’m receiving extra IV fluids on Tuesdays & Thursdays on the off weeks in an attempt to keep me from getting dehydrated again. My weight is up from 49 to 53 kg.
ROUND 3 – 11 February 2020
Amazingly, I tolerated this round of treatment quite well. The cold sensitivity lasts longer with each treatment and I am concerned at some point the effects it will not dissipate between rounds of treatment. The peripheral neuropathy in my hands is getting worse as well. I’m told this “usually” resolves after treatment. The usually is concerning though.
The fluorouracil (the stuff in the Ood ball) is really the killer each time. I can handle the other stuff okay, but by Wednesday night into Thursday morning, I’m really feeling like trash. It’s really wonderful each Thursday afternoon when I get disconnected that that stuff. It’s like a weight is lifted from me.
22 February 2020
Almost time for Round Four. My weight is back up to 60 kg, although some of that is fluid retained caused by the massive amount of Prednisone I’ve been on the last three months. I’m now tapering off the Prednisone and expect my weight to adjust in the weeks to come.
Really Most Sincerely 