Day +20. Energy levels are still fairly low. My blood counts are low, but stable! I’m not making anything, but more importantly I’m not losing anything. On Monday, my doctor lowered the dosage of one medication (a really good sign), and took me off the IV magnesium (huge time saver!). All in all, just hanging tight and passing the time patiently.
I’ve been falling into a new schedule since coming home. With all the medication timing, I’ve been finding a “new normal.” (Nothing like the Ryan Murphy show).
8:00AM – groggily wake up, pop first round of pills, take blood pressure and temp, take tylenol and oxy to ease body aches
9:00AM – eat breakfast, pop second round of pills, shower
9-12:00PM – binge watch a show or nap
12:00PM – each lunch, pop third round of pills
12-3:30PM – continue binge watching a show or nap
3:30PM – snacks on snacks, pop fourth round of pills, take blood pressure and temp, take more tylenol and oxy to ease body aches
4:00PM – take a stroll around the neighborhood
6:00PM – eat dinner, bicker with my dad
7:30PM – Facetime with my family back in Texas, get yelled at my 20-month old nephew to go “bye” so he can watch Bubble Guppies on the iPad
10:00PM – pop fifth round of pills
11:00PM – promptly PTFO
It’s all pretty uneventful, but for my tired self it’s enough to keep me busy. I have to keep reminding myself that I’m in an important recovery period (the first 30 days post transplant), and that I have to be patient with myself, and that I can’t expect to go back to being fully healthy immediately, and that I have to be patient with myself. It’s super frustrating for me, a person who was super-hyper-functional and independent before all of this started happening, to sloooooow my roll and take my time. If I haven’t learned the virtue of patience in my lifetime, I’m definitely learning it now (spoiler alert: it’s not that fun).
I really have no room to complain though. I’m staying relatively healthy and I have no GVHD thus far (thank the sweet baby Jesus). My dad has been more than accommodating and helpful, even if he doesn’t really understand everything all the time. My roommates have been more than supportive. I have friends who constantly check in on me and continue to surprise me each day with their love and support. I’m one lucky guy! I’m just hanging tight until I can get back on that horse and keep riding along! 🙂