Day +119, Tuesday

Photo of the Day: Taking a mid afternoon nap outside. It was just marvelous listening to all the outside sounds – the chattering of birds, wind chimes, the occasional hum of vehicle passing on the road. The 62 degree temperature was nearly perfect, as was the light breeze preventing me from overheating (power surging). I had hoped to hike – today, this is just what my body needed instead.

I really was late to my appointment today, but did my best to just let it go during my drive. It helped that I turned off my standard NPR, choosing instead Amazon’s “I miss the 90s” mix. When’s the last time you heard “What’s the Frequency, Kenneth?” by REM? Regardless, at 9:12 am, they still let me through the door, blood was drawn and then I saw my doc.

Last week’s Tacrolimus was high, to say the least. Topping out at 11-something (goal range for me is between 5-8) on Tuesday, and then back down to 8-something on Friday with no dose change or missed doses, well it’s a little hard to understand. My NIH Team said to not worry – that it’s normal for it to jump around a bit. The key is to keep an eye on my symptoms and make sure they aren’t getting worse; once we get today’s Tacro number back, we can make the call on what to do.

For the record, I’m still drinking 3-4L of water per day. And yes, today’s Creatinine count was normal, which makes me hope/believe that my Tacro level will be more aligned with where it should be. To Be Continued!

Overall my body is OK, with likely my skin struggling the most. The rosacea on my face is about the same, as long as I manage it with Metronidazole, no worse and no better. Sometimes I wake and my face skin looks clear, other times I’m just extremely rash-y and red, with red spots that resemble acne (but aren’t as far as I can tell). Even though it’s in mid-April, I’m already looking forward to my dermatology appointment. I’ve also got cracks at the corners of my lips; we are doing bloodwork to see if it could be a vitamin/mineral deficiency. My inclination is to roll my eyes at this – I eat super healthy, try to get a healthy balance of all foods. But then I remind myself that I’ve just had a Stem Cell Transplant and all things being equal 1) cheesy pasta is not its own food group 2) Fruits and vegetables are important 3) I had a lot of chemo that pretty much wiped out my system. It’s not unreasonable to think there could be a Vitamin or Mineral deficiency.

There was a Monster, eyeing my peeled apple.

I returned home closer to 11:30 and kept the cats company outside. As any excellent chaperone would do, I fell asleep, enjoying some time mostly-out-of the sun. To be honest, I really can’t recall the last time I sat outside and slept or listened or just enjoyed being mindful in my backyard. I was lucky that all three happened for me today. Later it was a chat with my therapist, future project work and a playdate with good friends in the park. Meaning Andy and I showed up and enjoyed spending time with friends and their kids (while the kids played and we played with the kids). I watched Andy crawl through a series of tires, hoisting himself up to a second level using only his arms (because his legs were too long). I was impressed. More importantly, it was just wonderful to see friends and catch up – I’m grateful for the people in my life.

As soon as the sun set, the temperatures dipped in tandem. Andy and I stopped at Rocky’s Hot Chicken Shack (yes, that is the actual name) for dinner. I’m not comfortable eating inside or outside – so we enjoyed time together in my little car, which is comical for a 6’3 or 6’4 person like Andy – while waiting for our dinner to be delivered. He ordered something that made him 1) sweat 2) blow his nose, and 3) use the bathroom. I settled for the much safer “Chicken & Waffles”. As my first time enjoying this particular meal – I have to say that I would do it again; savory, sweet and a bit of a kick all in one.

And honestly – overall, there were lots of great things about today. I feel incredibly fortunate to be able to write that and grateful to be where I’m at on this post-transplant journey. Thanks for reading & goodnight!

Rocky’s. I always love this sign – just off of Sweeten Creek.

  1. Sitting outside sounds like a dream come true, and I’m glad you got to enjoy that experience. Minnesota temps are in the 30s, which has seemed positively spring like after our deep freeze weeks.


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