Just Checked in
Began my day as usual minus having to check my work emails / notifications. Yachna had setup the lunch / snack bags for our entire day (as always but a bit more contingent things for me). She also had an early morning surgical schedule today.
I took a cocktail of preventative medications that included anti-gout, anti-viral, anti-bacterial, anti-pneumonia (another anti-biotic), anti-fungal, and my usual Vit D supplement. That was at 7:40am along with my breakfast!
Hemali and I were quick to get ready this am, and got out at scheduled time of 8:00am, dropped her at school and she gave me a huge hug and we wished to see each other later today (as opposed to getting hospitalized).
CheckIn (location = “Kaiser RWC”)
8:30am: notice a wonderful bag with goodies in it! (Linda, et al).
Plan for Day 1
The chemo regimen calls for a long day one: Cladribine infusion for a couple of hours, followed by some premedication, and then Rituximab for 5 hours (which is technically, immunotherapy and not chemotherapy).
9:00am: all set with saline line while we wait for the medication is prepped (based on my weight at checkin).
What to expect from day 1?
Cladribine effects include suppressing the immune system and lowering the platelets count on Day1. Remember a lot of these cells are malignant to begin with. (Started around 9:30: it was carefully packaged by pharmacy, peer reviewed by another nurse, and patient validated before administering).
Premedication IVs include Steroids and Tylenol which will likely encourage infections and mask them. So counterintuitive, but it apparently makes things better eventually. (Jeez, only if it was not beginning with such a high risk!).
Rituximab causes further immune-suppression and has its own side effects as well. If usual infections in my body had their day, this 4–5 hour infusion will be suspended and treated before resuming.
I came prepped with two days worth of everything, just in case I’ve to camp here.
How did it go?
TL:DR went ok at the hospital; a bit topsy-turvy at home with high fevers. But no ER trip (yet!).
11:30am: I received Benadryl and while RN was yet to stop pumping, I felt sleepy and my hands too touched tired to type.
Noon: while I stopped dozing, I started getting dry mouth and chest uneasiness.
12:15–1: Rituximab was started a bit after lunch by the backup nurse.
1:00pm: I was shivering a lot as well as getting a bit nausea. They got the fever reading of a bit lower than 100 degrees. The nurse stopped Rituximab and replaced with Saline to hydrate the body.
2.:15pm: I had lunch (Kadhi Chawal / Rice). It was delicious and then again lots of sleeping.
3:00pm: yachna dropped by to check in on me and helped debulk lot of the things that were in my way as well as tuck me in again for another two+ hours. The estimated time to go home then was around 6. (That meant Hemali needed to be picked up before I’ll be done).
5:30: I was done with Rituximab and Yachna was called to pick me up. We both picked up Hemali and she was really happy to see both parents at pick up (that’s rare in general, and today her expectations were a bit too low).
6:30–8:30: I kept sleeping at home, beginning with shivering and lots of blankets, and fever of 100.2. There was confusion as to whether I was allowed to take Tylenol (back discharge nurse said it was ok). Yachna spent good part of her next two hours with chores, dinner, and calling Kaiser nurse for clarification. We also did more readings that ranged from 100.4 to 101.7 — all leading me to ER.
9:30: after dinner, lots of water, and fewer blankets, I now don’t feel feverish. It’s at 99.6 but that doesn’t drive me to ER. (Note; the biggest challenge of going to ER is really taking care of Hemali at home when we are both gone driving me to / from ER).
I need to write about what treatment options we had and how we got to a decision / selection.