Day +27, Monday

Photo of the Day: Back in the Opthalmologist’s chair. My eyes have been more dry lately, as has my skin and lips. I’m blaming the chemo. And all the meds. And the transplant. And mayhaps, the change in seasons as well. The Doc confirmed that it’s not a giant piece of sand nestled in my left eye (which I swear I felt), or even a tiny eye lash…..instead I just have really really dry eyes. She’s recommending Restasis, a prescription eye drop that increases tear production, to my Team. She also found a small stye in my left eyelid, and recommended warm compresses for relief and stye shrinkage. I hate styes and I hope this one goes away soon. I will be warm compressing with the best of them.

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!”

Oh well.

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.

Currently, there is not enough moisturizer

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 veins in the eyeball on the right looks like a lightning bolt.

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 –

It has become less weird to ask people 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!

  1. Enquiring minds want to know what sorts of horrible things are hiding in the butt swab area…. I’m giggling about the low roughage diet. I imagine small children everywhere would be in favor of that if it got them out of eating green veggies. Fingers crossed things continue on the upswing. Toes crossed, too!


  2. All packed, ready to go, a ride to the airport, a flight, a taxi ride and a humongous hug!! It’ll start in less than 24 hours. What a great Thanksgiving we’ll celebrate. Dad won’t make it, but will be with us for Christmas. Looking forward to moving to the condo and seeing Andy again!!


  3. I am so crossing my fingers and toes and saying extra prayers that all goes smoothly and the end is in sight.
    – With great pride to know someone that can conquer insurmountable mountains, I remain-Aunt Donna


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