Day +55, Monday

Photo of the Day: I saw this during my walk with Mom and it made me laugh. There were several other phrases on the Rock Creek trail we were on, and we stopped to check them out. We also watched a beautiful sky emerge, clouds tinged with blazing orange and bright pinks from the setting sun. And then the clouds increased and blocked the celestial magic. It’s OK though. We still celebrated a great day and will venture up to the roof when its clearer tomorrow.

There were a few interesting developments today. The early favorite was Daniele’s proclamation of, “ohmygosh! Your hair is growing back!!”

Wait – what?

For some reason, I thought it would take 5 months before any hair growth occurred, had prepared myself for that. But over the past few days, I thought some of the hairs above my forehead looked new, less stubbly than the few that never fell out. But never gave it much thought because of the entire 5-month thing. Daniele confirmed – apparently I’ve got an old man thing going on – still totally bald on top, with a bit of very very soft and white-blond teensy-teensy hairs on the sides and back. Plus the stuff above my forehead that I can actually see. So I’ll take it! She mentioned that a lot of female transplant patients have a GI Jane-look going on for their 6-month check-ins.

We’ll look forward to that!

Going through security checkpoint #2.

I left the apartment around 7:30 this morning, earlier than my normal “aim” of 8 (but let’s just call it what it is…. 8:15-8:30). Because my body does not do well with Bactrim, my Team scheduled a Pentamadine breathing treatment at 9, which will give my lungs about a months’ worth of protection from pneumocystis pneumonia. My job was to have labs drawn pre-breathing treatment, which would allow me to take my morning medications (specifically my Tacrolimus) on time.

It was another miracle in phlebotomy: I didn’t even have an opportunity to sit in the waiting room, and my number was called about 8 seconds after I was handed my ticket slip. Again – having my car inspected, the line at the coffee cart – those ALL took longer than my blood draw.

Then it was up to the 9th floor for Pentamadine. It took about 25 minutes to inhale all of the medicine and I busied myself with reading. And since I knew about the post-treatment candy, I made sure to request. Today’s respiratory therapist was nice and I was munching on a cinnamon thing while making my way down to the Outpatient Day Hospital.

From the third floor, looking up to the 5th floor, with NIH folks standing in line for something – honestly, I’m not sure what (if it’s a normal flu shot or the new COVID vaccine – I didn’t think to ask). And at the top, the 7th floor – or my walking route when I was inpatient. I am grateful that I am no longer inpatient.

My appointment went well, counts are making their steady climb and progress. My White Count was an astonishing 4.2, Platelets jumped to 154, Hemaglobin at 11.2, and Absolute Neutrophils at 2700. My Magnesium was still a tad low, my Tacro a bit high. My Kidneys do not like this combination and as such, my level crept up to 1.2. So I’m working on pushing the fluids and doing all that I can to keep my body going. It’s been through a LOT, after all, which is what I remind myself when I hear about “slightly elevated” results.

My body has been through a lot.

Because my numbers were still a bit high, the Team wants me to come in on Wednesday (both Thursday and Friday are Federal Holidays) for labs and a quick visit up on OP12 (OutPatient Clinic, 12th Floor). I can do that.

Then it was home – I chatted with Dad and then called Andy. My Team is very uncomfortable with him flying at all, and would prefer IF he was going to visit, that he drive. It’s not worth the risk. Andy took it well and just said that meant the decision was already made – he would drive. He’s still in quarantine, waiting for his COVID results for a test that was administered Sunday morning. He hasn’t left the house since last Wednesday, aside for his test. We DID get the green light for him to drive up OVER CHRISTMAS IF he has a negative test result AND has absolutely no symptoms. So we wait.

And when Andy waits, he does helpful things like install hardwood floors throughout the upstairs. It’s impressive, I’m not going to lie. My waiting looks a little different – but then again, I just had a stem cell transplant

Later, Mom and I enjoyed a walk along Rock Creek and celebrated an overall nice day with a happy hour. I splurged and had a glass of champagne, and enjoyed almonds and cheese. Chatting with Christine was wonderful and I introduced Mom to “The Great”, which I watched during my inpatient stay. It felt good to laugh, feel excitement and be grateful. Tomorrow, Mom and I are planning on a grocery store run, a walk, and heading to the roof to watch the planets. Goodnight!

Tree section – I love textures and was fascinated by the colors.
Cheers! Salut! L’chaim!

  1. Upbeat narrative. I like it. You have a powerful body: triathlons, 400+ miles across the Colorado Rockies, bone marrow transplants. WONDER WOMAN! I do admire your strength, determination and humor. You are truly an inspiration. And you are growing hair again. What could be better?



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