Day +75, Sunday

Photo of the Day: saluting the tree with hot chocolate & marshmallows. I was unhelpful, but cheered Mom as she de-trimmed, something I abhor (just like folding laundry). She does both….Mom is awesome.

Day 75!! Tough to believe that we are at the 3/4 mark to Day 100 – but it’s here! We celebrated by reading and Zooming with Dad, Andy & Lucy. Honestly, today was low key as both Mom and I delved into our books – she with Book 2 of the All Souls Trilogy, and me with Book 4 in the since-updated All Souls Series.

They are magical and delicious.

In the interim, I drank tea, Mom showered and I tried to ignore the increasingly desperate notifications from my Apple Watch to do helpful things like “stand” and “move”. At 21% complete for the day, my rings will NOT be closed. I’ll just pretend that Kurt’s rings, all 202% – now 209% – are mine and leave it at that.

Watch buddies are cool, even the ones who kick your tush.

Tomorrow I’m back in the Clinical Center and I’m curious how my creatine & Tacro levels are. It will have been a full week of testing out a new Tacrolimus dose schedule, and I’m hoping this works. Plus I’ve really upped my water & general fluid intake – hopefully my kidney numbers will still be in the normal range. I’ll also touch base with the Team about my return to Asheville; I’m aiming for February 5, which puts me at Day +101 and a solid 9 days ahead of my 40th birthday, but we’ll see. I’m still doing the one step at a time thing, yes, but it’s also important to get my care transferred and be as prepared as possible to when I’m no longer visiting the Clinical Center twice weekly. Hope is a beautiful thing to hold, when it provides promise of reuniting with Andy & kitties.

My body has felt OK today – stiff from all the inactivity, but otherwise, not so bad. I can’t see ANY rash on the skin of my arms, which is extremely promising, and in general, my skin feels mostly fine aside from just super dry. Eyes are still puffy, especially in the morning, but tend to de-puff as the day continues.

As for the rest of the evening….? More reading and drinking my favorite decaf version of creamy English breakfast tea. Goodnight and stay safe!

  1. What a delicious day it was! The luxury of pjs and books. Nothing gets much better than that! My book is about witches, vampires and magic, very much magic. I can’t wait to get to Book Three.
    Also, tree de- trimming. It’s done now and will be put in the pile of things for Andy to take home! With any luck, we’ll be headed for Asheville on February 5!! And then, in a week or two, I’ll fly home to St. Paul.


  2. I’m glad you both had a good day and are making plans for the next few weeks. Day+75 is a great milestone and must give you confidence about the coming ones.


  3. I’m looking forward to Zora’s return home, hopefully, in early to mid February.
    Marit arranged a Zoom meeting that brought her,Zora, Andy and me together and a second meeting without Andy but with Lucy
    Things are looking up.


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