Another week, a new Monday. And for those of you who don’t know this, but Monday morning at the NIH is also referred to as “Butt swab Monday.”
Why is it called “Butt swab Monday”?
Because every Monday morning, along with the usual vitals, blood draws, and weight, the nurses have to collect tush samples and send them to pathology, to ensure that no patient is carrying some highly infectious disease of the rear end. It’s not pleasant, but it’s just one more thing about living (temporarily) in a hospital. Bet you didn’t know that. Well, I’m sorry for sharing. And last week, when I thought I would be out of the hospital, I even joked with my nurse, “no more Butt swab Mondays!”
I was up at 7:15 when Erin came in for a pre-round check. We went over 1) symptoms (including dry & itchy skin, a delicate GI system, dry eyes) 2) how the weekend went (low key with no new issues, progression from Clear Liquid to Full Liquid) and my favorite 3) Semifinals of the Great British Baking Show. Both Erin and I were surprised by who was eliminated.
Then it was my morning ritual of shower followed by more body creams and lotions than I’ve ever used in my entire life. Seriously, my skin is incredibly dry and itchy – chemo, weather change, medications, transplant….pick your poison.
Full rounds came just after 10, and Erin returned around 10:45 with an updated plan. As long as my body handles going off Bart, and tolerates oral (as opposed to IV) medications, and my GI system behaves while we re-introduce foods to my system (I’m on the GVHD 2 Low Lactose/Low Roughage Diet), there’s a potential that I could leave on Wednesday or Thursday!! Erin even told me that it would be a good idea to arrange my Mom’s flight. I didn’t hesitate.
SO – I’m trying to be realistic about discharge this time. I know that with transplant, things can change very quickly and that there are no guarantees. I would love love love to embrace both Mom and Andy, spend Thanksgiving with them, give lots of hugs, hold them tight – I have missed that physical connection so incredibly much. Hospitals are wonderful in their own way, and while I adore my Team, the 3NE nursing crew and am grateful for my transplant, it’s been nearly 5 weeks of being in the hospital on my own, and I miss being in close proximity to my family, friends and loved ones.
And I’m not alone in this. So many in 2020 have spent a lot of time in hospitals, far away from loved ones. In my case, I’m so thankful for the cards and heartfelt notes people have sent. I taped them to my wall and look at them every day – thank you.
After Rounds, Rec Therapy came by and Caitlyn once again kicked my tush in Uno Flip. Then I was off to Ophthalmology. Bart and I sat in a chair outside of the doc’s office for so long that I fell asleep. There were pictures of eyeballs, staring us down.
The remainder of the day went OK. I asked another one of my nurses to sign my Turkey – a brilliant project that Melissa sent me that involves a paper turkey, paper feathers with space to write, and glue. I’m trying to get my nurses and as many people who work with me to sign a feather –
My days’s end involved a tame dinner of turkey hot dog, rice and canned green beans. My GI system said thanks. My palette said, um okay? The Zoom date with Andy was much more exciting, and I don’t want to get my hopes up to see him Thursday, but I’m so excited. I love him so.
Here’s to another quiet night, and rounding the curve towards Day + 28!