Thursday, May 23, 2024: Day -6
I’ll be getting two different chemotherapies the next four days: busulfan and fludarabine. Today’s dose included busulfan, a 3-hour infusion that started at 4am. The reason we had to start so early is that we have to do something called pharmacokinetics to determine the optimal dose to give me the next three days. They draw my blood right after the infusion, an hour after, two hours after, and four hours after to see how quickly clears the drug. They can use this information to then dose me appropriately for the next three days. With any chemotherapies, there are risks so I get a bunch of premedications beforehand. Keppra is an anti-seizure medication as busulfan can in rare cases causes seizures. Zofran is for nausea, dexamethasone is a high dose steroid to prevent any infusion reactions and clonazepam can also prevent seizures. All this to say, the premeds knocked me out which I’m not complaining about.
Gordon came at 3 AM this morning, which was very nice to have the support. This has been the shittiest experience of my life, but I am forever grateful for the family that I’ve been given to help support me through this.
3:00 AM: oral keppra, oral clonazepam, dexamethasone 16mg IV, and zofran 8 mg IV.
4:00 AM: Busulfan IV. Busulfan can cause oral ulcers so Gordon made me some sterile ice cubes (because ice machines are dirty AF) to suck on to hopefully reduce mucositis when/if they happen.
7:00 AM: PK draw 1
8:00 AM: PK draw 2
9:00 AM: PK draw 3
10:00 AM: fludarabine
11:00 AM: PK draw 4
1:00 PM: Mycofungin
2:00 PM: Recreation Therapy with Zilly
6:00 PM: Keppra/Clonazepam/MagOx/Zofran
9:00 PM: Tacro 4mg/Entecavir/Valacyclovir
Zilly really is the highlight of my week. I’m missing my Maple so much but am so thankful that Forrest and Neesha have loved on her so much.
Friday, May 24, 2024: Day -5
Today was the same with fludarabine and busulfan. I’m starting to get some taste changes – everything smells/tastes like acetone and I don’t have much of an appetite. My family really is wonderful. Gordon made some more sterile ice cubes for me; we did a little walk around the atrium; and we have family workouts that the nurses inevitably walk in on us doing all the time lol.
Saturday, May 25, 2024: Day -4
Sunday, May 26, 2024: Day -3
Today is the last day of fludarabine & busulfan. I’m definitely starting to feel terrible. I have 0 appetite and smelling anything kind of makes me want to hurl. But my mouth hasn’t ulcerated yet so I should really take this opportunity to eat while I can without pain. I did think I wanted some Korean japchae today so Gordon went all the way to downtown Bethesda to get some for me, only for me to realize I can’t really taste much. The texture was still good though.
Monday, May 27, 2024: Day -2
No chemotherapy today, but I’d say today has been the hardest. I couldn’t sleep last night as I was very itchy (I’ll spare the pictures of my petechiae legs) and my nausea didn’t really wane throughout the night. I got compazine this morning but that knocked me out until the afternoon. I was able to get up by 4 PM and walk around the atrium and do a little 90s themed walk at home routine that my mom likes to do for about 10 minutes. The little things .. lol.
Tomorrow is Day -1! Hoping things feel better tomorrow than they did the last few days.