I awoke to a sky full of rain, clouds rolling past my window, the leaves making a last minute stand against the wind. The color, a golden blue – which I don’t know how that’s even possible because they don’t exactly share a space on the color wheel – a golden blue hue prompted me to open my shades and just observe the world waking. And before I could talk myself out of it, I donned my face mask, threw on my slippers and grabbed my laundry. Yep, that’s right, it wasn’t even 7:30 and I was ready to do laundry.
Clearly, something was going right with my body. Emmy, my nurse for the day greeted me and before I could ask, told me what my numbers were. I almost jumped up and down, but didn’t want anyone rushing to help, lest they think I’m having a seizure. And, since it was early (not for hospital staff, but early for patients, I resisted the urge to shout WOOHOO!!!). Instead, I very calmly tossed my laundry into the wash and returned to my room where Emmy had already updated my daily board.
And then texted Andy, Mom, Dad and Lucy my numbers. And then took photos of The Tree, which looked especially beautiful in the morning light and damp weather.
Morning rounds went well, Dr. Hickstein remarking, “she’s out of bed! Incredible!” I grinned – which he couldn’t see behind my mask, but surely reflected in the eye crinkles my hair no longer hides – and remarked, “and I’m doing the crossword puzzle in pen.” We discussed my numbers and how I was feeling. Goals for the day involved having a bowl movement (check, and if inquiring minds want to know, it was an A+ kind of movement), working on swallowing, and continuing to get enough calories to support my body. Dr. Hickstein remarked that my ability to swallow pills will be a big factor in my release from inpatient. And given what a big deal this is, and how hard it has become – I completely understand.
Mucositis is a very serious post-transplant challenge. I’ve never struggled with swallowing pills or bending my tongue inside my mouth. I’m doing my best to avoid chapped lips by spitting into a vacuum suction tube (almost like the suction at the dentists’ office), and the feeling inside my mouth with bits of crud from my tissue – is that tissue from my tongue? Is that bubbles of saliva or is Mucositis mucous just shaped this way?? Can we call Guinness Book of World Records? There are more questions I could ask, but a) you don’t want to hear and b) I don’t want to think up some terrible answer.
Once rounds were finished, I folded laundry pronto. And took pictures, both distracting me from mouth pain. And while I was folding, I realized how much of a festival miracle this is – I hate folding laundry. So maybe on a) chemo days and b) days where Mucositis has me feeling down – well, at least I can fucking fold the laundry.
The rest of my day was boring and low key, which was perfect. I went for a 45 minute walk, read Harry Potter, had a B+ BM, washed the stubble on my head with prompted most of it to finally fall out (I’m tired of pulling out clumps of hair), admired my now-shiny Sweet Melon (to quote Debbie), zoomed with Andy and Face Timed with my folks, and ate an ice cream like substance for dinner. Thank you Day +15!
And before I sign off for the night, I just wanted to say Happy Veteran’s Day! Thank you for your service and sacrifice and especially to Andy, my favorite service member who spent 10 years in the Navy. Thank you Veterans and service members!
Fantastic white blood count, laundry done and folded, doctor’s visit, 45 minute walk, Harry Potter read and a face time with the folks❤️ An amazing day!
Two bald heads = love in 2020
Congratulations on your progress! You are amazing! ❤
Great progress! 45 minute walks are good. Marathons are in your future. Keep up your wonderful morale. You sounded very strong during our FaceTime. You are dealing with this very well. You are so impressive!!!
I’m glad that day +15 brought good news to the white board and gave you time to read and walk and (even) fold laundry. Good luck with the swallowing. I have a feeling you will conquer that just as you have conquered so many other obstacles along the way.