Day +76, Monday

Photo of the Day: Attempting curtsey lunges during my virtual workout. Tomorrow I won’t be able to walk down a flight of stairs, but today I was proud of myself for the workout. And ow.

I pulled my usual Monday/Thursday stunt, cursed my alarm, and fell back asleep. Thankfully, the 0730 NPR news roundup woke me from my slumber, and while I took my time in the shower, I made up for it by tossing items – clothes, ID passes, books, medications, snacks, water – on my bed in one giant heap. I was out the door and on campus just a smidge after 0830. The first gate – Patients & Visitors – was no problem.

The Parking Garage, well, that was another story. The backup meant that I couldn’t even turn off the main thoroughfare for a few minutes.

Obviously I did – turn – eventually. It looks worse than it really is, as the security folks are both detailed and efficient.

I figured I would be late for my labs, but within 3 minutes of being seated in the waiting room, my number – A9 – was called. Honestly, I can’t figure out how the crowd/wait in Phlebotomy works. And when I asked my very helpful Phlebotomist if he knew how it worked, or if there was a “method to the madness” he nearly fell off his chair laughing.

At least he found it comical.

Then it was up to the Outpatient Day Hospital to meet Daniele and Erin. Once I received my room assignment, I texted Daniele and the two were down fairly quickly. Long story short – labs are looking good! The two that we are tracking – Tacrolimus (immune suppressant level) and Creatinine (kidneys function) – were reasonable. I say that because my Tacro was still below the 8.0 number that my Team wants at 6-something. However, my body seems to be doing OK with this slightly lower level, even my skin at this point seems to be recovering, and my organ function and lab results are all normal. We decided to maintain my current regime of .5 mg Tacro every morning and 1.0 mg Tacro 4X/week (MWFSaturday), alternating .5 mg Tacro the other 3 nights. We’ll recheck on Thursday.

The Kidneys are still ok, although my Creatinine rose nearly 1/10 of a point to 1.07. This is still normal; I’m drinking 2L of water per day (minimum) and I have no clue about my tea, kombucha, soda water and Diet Coke (yes, today I drank a Diet Coke…it was lovely. And made me burp, fiercely). I was told to keep pushing fluids; as I like my functioning Kidneys, I will do just that.

Otherwise, my Labs are looking great, given my Stem Cell Transplant 76 days ago. I got a giant, “WOOP!” from both Erin and Daniele when they saw my Platelets had jumped from the 140s (where they’ve been for the past month) to a whopping 161. They both looked at me and said, that’s almost in the normal range! My skin is also doing well, the sunburn-esque rash nearly gone from my arms and legs. I’m holding the steroid creams until Thursday, just to see how my body responds – the game of Whack-a-Mole will be on hold.

We also discussed my upcoming appointment at Walter Reed, and that I had been granted a 30-day access pass to the base. Prior to my transplant, NIH Dermatology discovered a basal cell carcinoma on the tip of my left ear – skin cancer, a very mild form. As the NIH is a research hospital, this is not something they would remove; instead, I was referred to Walter Reed, with the intention of having a minor Mohs Surgery near my +100 day mark. I’ve been scheduled for a pre-op visit this Thursday. After picking up a few refills from the NIH Pharmacy, I snagged a (rare) parking spot outside the North Gate of Walter Reed and spent a few minutes in Pass & ID before being issued my 30-day pass.

Then it was back to the apartment and checking in with Mom, following up with my doctors in Asheville, a session with my therapist, a power walk (in boots!) while chatting with Andy followed by a virtual workout. I cursed the planks, cursed the lunges, and felt like death warmed over on the pushups.

I hate pushups.

But I do them, because they are good for me. So good, in fact, that I agreed to join my friend Kurt’s 30-day pushup challenge.

The commentary in the background is Mom. This is pretty much how we roll, at this point.

And that, my friends, is about it. I enjoyed pasta and butter and cheese for dinner, and even shared a MessengerVideo date with Andy. Later, it was nice to catch up with Christine – I miss my friends very much. COVID has been tough for all of us, it’s nice to think about doing the fun things we’ve missed out on this past year in the company of others.

I’m away from the Clinical Center for the next few days, and am looking forward to some nice hiking with Mom, not fretting about blood draw timing/aka NIH traffic, reading a good book and stretching. Lots and lots of stretching. I’m not excited about pushups (but will do them anyway) or seeing how my legs feel after lunges – that one will be rough. Thursday will be another long day of NIH and Walter Reed related stuff, and Friday, Andy visits for a long weekend! I can’t wait!

Thanks Day +76! Oh – and here’s to closing the rings on my watch….at 104%. I’m nowhere near Kurt (229%…overachiever) – but I’m proud of what I did today. It’s a reminder that I’m getting stronger, my endurance is getting better, and that I CAN DO THIS. And that, my friends, is a wonderful feeling.

  1. Glad to see that you are working out. Trite to say no pain no gain but thatis the way it is. Your workout photos give me muscle aches.
    I’m very encouraged by your numbers. It’s clear you are doing the right things
    ❤️Dad

    Like

  2. You look healthy! I love the 30 days with Adrienne gentle yoga on youtube. You should check it out. Great job on the push ups!

    Like

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