Day -4: Schedules, schedules, schedules.

You’d think that for a patient who is under 24 hour care, disruptions would be kept to a minimum. Yeah. No. Aside from the constant pee breaks (Lord knows that happens more than once an hour), you’re constantly being checked on, for better or worse. Vitals, meds, fluids, you name it! Any reason, any time of the day. Don’t get me wrong, I’m not complaining about the amazingly superb care I’m receiving here at UCSF (seriously though, they’re fantastic). I’ve yet to meet a nurse who isn’t a wonderful human being and a great nurse.

Through it all though, I’m starting to find a rhythm (as musicians tend to do) to each day. A typical days goes as follows:

12:00AM – vitals
1:00AM – pee break
4:00AM – vitals, additional pain meds
5:00AM – pee break
6:17AM – Adam beeps incessantly
7:30AM – pee break (usually when I wake up)
8:00AM – order breakfast
8:30AM – shower & get ready for the day
8:35AM – pee break
8:45AM – breakfast arrives; salt & soda rinse after
9:00AM – get a new bag of mesna (bladder-damage control drug) and pre-meds
9-10:00AM – walk around the floor 12 times (equivalent to a mile)
10:00AM – next dose of cyclophosphamide with more pre-meds
10:05AM – pee break
11:00AM – next dose of rabbit ATG
11:00-11:20AM – check vitals every 5 minutes to ensure no adverse reaction to the ATG
11:30AM – order lunch
11:50AM – check vitals again, increase the speed of ATG infusion
12:15PM – lunch arrives; salt & soda rinse after
12:18PM – pee break
12:30PM – check vitals again, increase the speed of ATG infusion
12:30-1PM – walk around the floor 12 times
1:30PM – check vitals again, increase the speed of ATG infusion
1:32PM – pee break
1:32-3:00PM – binge watch House of Cards, play piano, or have visitors
2:15PM – snacks on snacks!; salt & soda rinse after
3:00PM – get another dose of steroids (SUPASTRONG), get pain meds
3-5:00PM – binge watch House of Cards, play piano, or have more visitors
5:00PM – order dinner
6:00PM – dinner arrives
7:00PM – shower
9:00PM – pre-meds (anti-nausea, etc)
10:00PM – another does of fludarabine
10:18PM – promptly PTFO
10:30PM – check vitals
10:45PM – pee break

Rinse, wash, repeat.

Now, there’s a good amount of variability that can happen in a given day so each day isn’t horribly monotonous. Say, I decide to go on an extra walk, or have additional pee breaks, or more visitors. The treatment regiment is fairly predictable though, and I’m totally okay with that. I’m finding it to be an exciting challenge to see how much I can squeeze into the in-between time before a nurse is supposed to check in on me. It’s the little things. 🙂

Day -4 and counting! Still tolerating the chemo pretty well. No major side effects again (YES!) aside from body aches and being a little flushed. Hoping for a continued smooth ride.

Thank you to everything who’s come to visit me so far! Having visitors is really one of the best ways to help break up the day. It also helps snap you out of the hospital drudge and reminds you that life still goes on outside of these four walls. Ooh, that sounds like a great indie album name, “Outside These Four Walls.” Or a 90s alternative rock band.


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