Day -1, Monday

Photo of the Day: Success connecting with Zoom & Andy, while my IV pole watches dispassionately. 2020 at its finest, and with the hospital background – symbolic. I really like this image; I didn’t know what I wanted to capture for today – but the life on the right, medical equipment on the left, and the only connection to the outside world being a window and a screen, this picture speaks to me. The random shutter released the moment that I connected with Andy, which is why I’m slightly blurry. I love art.

Tomorrow!

The day has arrived, well, almost arrived and I’m still sorta just taking it in. Today involved lots of walking on the 7th floor, listening to random music while letting my mind drift, a moving meditation, if you will. Additionally, I had my standard doctor check-ins; we are pretty much just managing the side effects of chemo (GI discomfort, general weakness, brain fog, loss of appetite). I washed my laundry, folded it, too. Apparently this aspect of chemo is good for me. I also tried some of the services the NIH has to offer – did a guided relaxation and set up an appointment with Art Therapy for Thursday. Mid-afternoon, a very wonderful package arrived from my parents; the drab hospital room is now decked out with colorful lights twinkling in the windows. It was a good day!

The Lights make me happy.

I did want to make an abrupt pivot and comment on the brain fog, or “Chemo Brain” as my Team calls it. I’ve been reassured that it’s not permanent, and that over time, the affects (effects? OK – don’t knock me on that one. Does anyone really know which is what?) …..the affects will diminish. Personally, I can tell a difference. My tone isn’t as sharp as I like, and humor is awkward and ungainly, like my timing is just off. Putting together thoughts takes more concentration than it should, and it just feels like a long, tedious process that I end up getting wrong anyway.

Texting with my folks, Lucy and Andy earlier today, I wrote the following. It’s OK to laugh…trust me, I already have:

“This is what the email looks like. I figured that tomorrow you guys could join in with Lucy, and maybe she could show you how she Zooms and show you what she’s learned from zooming with her siblings.”

Me, after 4 days of intense chemo.

I mean…WTF?

Well, we can’t be on all the time, eh?

With that last bit, I’m off. I’ve completed my night-time tasks, the biggie being washing my hair. Showering is not the easiest thing to do when one has a Central Line.

Now I know all different kinds of tape and how to wrap a Central Line, with help. Nurses are THE BEST.

But I’ve got an important date tomorrow and while I’ve still got it, I’d like my hair to look reasonable. Other night time things involve multiple mouth rinses and now that I’ve un-taped myself, wiping my Central Line area with Chlorhexadine cloth wipes to help stave off infections as my neutrophil counts are now officially below the 1200 mark. I could keep going, but for all of our sakes, I won’t.

Thank you all for the kind comments and words of encouragement. They mean the world to me. xoxo

Goodnight!

  1. What a day you’ve had!! Something constantly going on, all the time, day in day out, no rest. And then you find time to do laundry. And make sure your hair looks good for the big day❤️❤️ And even do some interior decorating!! Remarkable. I’ll join Dad, Andy, and Lucy tomorrow to celebrate. See you then.

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  2. Holding you in prayer throughout your procedure. You and Andy are rock stars of loving support. ❤
    Affect = influence
    Effect = result
    Peace out and talk to you again soon. With love, Karen

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  3. Love the snowmen ⛄️ on your robe!! Praying for you today! Stay strong like I know you are! I would love to send you treats or anything you need when and if you can receive mail…. let me know through Kurt 🥰

    -Molly

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  4. Good to see you so active. That is a very effective way to be ready for the transplant. You look fantastic in the photo. Ever forward!!!
    ❤️Dad

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