Day +86, Thursday

Today was a timing fail. An epic, Phlebotomy Lab timing fail.

My morning was nearly identical to all other Thursday mornings – wake up to alarm, tell Alexa to shove it, reset alarm for 30 minutes later, drift off, listen to NPR, stop Alexa before she can play alarm 2, drink creamy tea, shower, dress, leave for NIH. Traffic was great, and I sailed through both NIH campus security and parking garage security. It was all too easy. I should have known.

Then I hit Phlebotomy. And I waited an hour for my blood draw.

At one point, Erin called to let me know I had a Pentamadine treatment (this is critical for immune suppressed folks, and helps protect our lungs from pneumocystic pneumonia. Pneumocystic jirovecii, which causes this pneumonia, is a very common airborne fungus that most people have fought off by their 3rd or 4th birthday. The fungus is extremely opportunistic and as such, I will remain on Pentamadine for 3 months after finishing my Tacrolimus, or immunosuppressive meds). Anyway – Erin called to remind me of my Pentamadine. I told her I was trapped in the Phlebotomy line. She laughed and said to not worry.

Eventually my blood was drawn, and I quickly made my way up to OP12. My counts are still stable, and looking good. Today my neutrophils really stepped it up, with my ANC coming in at a whopping 4000. My WBC was 5.3, Hemaglobin at 10.6 and Platelets at 136. My eosinophils, a type of WBC that may spike during Graft vs Host Disease, are normal; I was concerned about this given how my skin feels (bumpy, rashy, acne one day – redness the next). Better yet, my Kidneys are looking great with my Creatinine level dropping to 1.0 (from 1.07 on Tuesday). My Tacrolimus is just a hair below 8.0 (we have not changed the dose in over 2-ish weeks), and magnesium is normal (I hate the stuff, as it makes my tummy gurgle).

Daniele also ordered a Urine test and culture to figure out what is happening with my bladder – is it a UTI…? Is this BK Virus…? Regardless, it is uncomfortable and I would appreciate NOT feeling pain and discomfort whenever I void my bladder. I’ll get culture results tomorrow; BK results likely next week.

Pentamadine was fine. Today’s Respiratory Therapist gave me a butterscotch candy before we even started, which pretty much meant I eyed it all throughout the 25-minutes of my breathing treatment. Yes, it was delicious and I savored while making my way back up to OP12 to see Daniele, Erin and now, Dr. Arnold. Everyone looked at my bumpy skin – next week I see NIH Dermatology (thankfully), and we confirmed my upcoming appointments in preparation for Day +100 workups. In addition to Derm, I will also follow up with Dental, Ophthalmology, have Mohs surgery on my ear at Walter Reed. I may be missing something – wouldn’t be the first or the last time – regardless, it will be worked out.

And that was that!

Then it was back to the apartment and chatting with Mom, making creamy tea, and figuring out why the apartment had no water when the faucet was turned on (building repairs, it turned out). I had a great session with my therapist and later, met up with my NC-based “Better Together” support group for folks with chronic illness over Zoom. I am thankful to have the strength and support of so many wonderful people.

My movement for today consisted of a functional strength workout. I was silly and spent 45 minutes doing ridiculous movements, including squats, sit-ups, lunges, pushups and yes – burpees. For anyone who knows me, I hate burpees. And yet, I do them anyway. In life, we don’t get to pick and choose everything – burpees are no exception. Besides, even if no one else knew that I skipped them, I would know; I’m the one who needs to be OK with myself when I look in the mirror. And the thing about this workout – its one that I’ve done before with my gym, and I hated it but loved it because it was hard and I pushed myself, a twisted combination of strength and speed.

Today I worked hard, but I also took time to drink water, catch my breath, and even place a pillow under my bum (for the sit-ups). It wasn’t about speed, quickness or maxing my heart rate; instead, I wanted to just put in the work, the effort, and gain strength. One day my quickness will return, but that’s not something I care about at this moment. I’ll know when my body is ready….and I don’t think it will just suddenly dawn on me, like a switch being flipped that YES, it’s time to start ramping up intensity or going for speed. I suppose it’ll be more of a gradual process, where I challenge myself to do the work, honor my body’s needs, all while nudging that bar – at whatever level it’s at – nudging it forward. In my post-transplant life, I don’t want to be afraid of pushing or challenging myself – I think it will be just a large-scale balancing act.

And that’s cool. I can do that.

My late dinner consisted of pasta, butter and cheese. I know, I know….absolutely zero people are surprised at my food choice. Mom even made it for me, so I could chat with Andy, which was very thoughtful and kind. My legs, slightly shakey from the lunges, agreed.

Tomorrow – weather cooperating – we are planning a drive up to Gettysburg. Neither Mom, nor I have ever been and we have both enjoyed being witness to the history that occurred in this area 150 years ago. For now, that’s all. Except there’s still a slice of carrot cake in the fridge with my name on it, and as long as my lunged-out legs can get me there – it’s mine.

Goodnight!