Day +83, Monday

Photo of the Day: a quick laugh, my feet in his lap, before Andy heads home.

Today marked another major milestone for me. With Andy’s return to Asheville, the next time I see him will be at home, after Day +100, when Mom & I leave the NIH and Bethesda. Don’t worry, it won’t be forever: I’ll return at the end of April for my 6-month post-transplant check. In the back of my mind, though, I’ve been awaiting this moment – it’s just one more milepost on my transplant journey.

Next time I’m with Andy, I’ll be home. And that’s a wonderful feeling.

After Andy left, the day was low key. I read and napped, checked in with my transplant nurse Lisa for our weekly COVID screening, and later Mom and I watched a movie. Tomorrow I’ve only got labs and with my car parked in the NIH garage for the weekend, I’ll enjoy an early walk to the Clinical Center. In the middle part of the day, I’m headed with Mom for a wig fitting. Indeed, those are not words I ever thought I would say, but there you go…that’s life.

And maybe after donating my hair way back in October, the wig gods will smile down at me. Who knows?

I’m feeling OK. I can’t complain about big stuff – important things like organs not working – but I’ve noticed it’s a series of little things. Over time, they can just wear me down. Generally I try and keep this in perspective, but once in a while I just want to say, enough! Between my face acne and bumps, super dry skin, BK infection that feels like a UTI, it’s no fun. Add in super dry nasal cavities. And some clothing items that feel super uncomfortable to my sensitive skin. And a GI system that is OK one day, but the next I find myself breaking wind with great caution.

It’s nothing and everything all at the same time. I tell myself that it’s not forever, and try and focus on mindfulness and gratitude, not dwelling, and taking things as they are in the present. Sometimes this is easier said than done; I suspect this true for us all.

On that note, it’s time for bed. But first, my 30-push-ups. Can’t forget those! Goodnight All!

  1. Sad to wake up and have no Andy. He fills this space with humor, and good vibes!! He is the most helpful person: who would spend a bunch of time getting my phone and Alexa in sync! I’ve grown to love this device and can’t wait to have it home with me in St. Paul!! On Friday, it’s 2 weeks until we leave for Asheville, and then another several days until I’m home. The last days pass too slowly!

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  2. I can imagine that all those bothersome irritations do add up to frustration that is hard to overcome. I know I would be in the same boat with any one of them. I hope you can use your usual positive attitude to keep doing what you do so well: put one foot in front of the other.

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  3. Hello Marit, You have been through a storm of challenges, and still you rise to it. You give us all energy to persist. I see your world opening back up every day. You know you are gaining strength !

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  4. We look forward to your return to Asheville I look forward to Mom coming back to me in St. Paul.
    I’m sorry you have minor frustrations but am happy that there are no major problems. Send a photo when you have your wig.
    Love Dad

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