Day +1, Wednesday

Photo of the Day: Apparently TP at the NIH is a bit, ah, abrasive. Rough. And with me pushing the fluids, it’s being used frequently. My previous supplier (aka Andy) favored the soft, forgiving Charmain-y type of TP. I was silly and made fun of him for it. I was wrong.

WE ARE AT DAY +1 !! It’s an entire NEW counting system!! I’ve been getting to know my cells for 24 hours now – it is SO COOL! Just had to say that!

Sometimes I’ll update my board (which also functions as my closet door), sometimes my nurses will.

In other news, today I pulled out Excel. It’s something that I normally only use to plan backpacking trips, but once I heard my White Blood Count (responsible for fighting infection) and Absolute Neutrophil Count (a sub type of the WBC), I was floored and wanted to keep track.

Be happy for me – I’m totally NOT sciencey or technical, so figuring out how to do this, well, that was cool. Give me Photoshop any day. But I’m learning.

My counts have been trending down, a function of the chemo; but overnight, they dipped to a (new but temporary) record low for my Absolute Neutrophils of 0.77. Historically low counts have just been my thing, true for many with GATA2. But as a patient, it is fascinating to experience these changes daily.

Throughout the day, I’ve had medical folks checking in on me to see how I was feeling, or if I was noticing ANY changes (I did tell Martha about the TP. She laughed and said she understood). I appreciate their concern – they ask because they know more about what’s happening in my body than I do. And they know what to look for, where as with me…well, I don’t. I’ve been told to report everything.

Everything?

Yes, everything.

So I’m going to need to very quickly get over any sort of awkward embarrassment with my Team. That shouldn’t be too difficult, as I was the one whose POTD was a roll of TP (yet again, a sign of 2020).

A break from my room, finishing up Book Two.

Overall I’m doing OK. I’ve had a headache that has been slowing building throughout the afternoon. I can feel a flush in my cheeks, forehead and ears. I get to take Tylenol to help manage discomfort and my Team will just be on the look out for any signs of a temperature. And the thing is, is this could just be a function of what it feels like to have my blood counts drop quickly. It may not even be an infection….it’s hard to tell because there is SO MUCH happening in my body right now.

That’s why I’m going to trust my Team, report everything, listen to them, and remind myself of the words Jen, my awesome social worker assured me with earlier today,

“You have shown over and over again that you can do hard things.”

Finally, I ended tonight on an upswing – chatting with both my sister (Hi KK!) and Andy. I’m so thankful for my family, friends and donor. And Tylenol. And soft TP.

The source of my good TP, on Zoom.

  1. Sounds positive. Will the blood counts come up anytime soon? So glad you and K talked. You have full family support and that is good. Let us hope the next days, weeks, months see you improve and feel free of discomfort and pain.
    You are always in my heart and on my mind.

    Like

  2. Oh! having such low white blood cell counts is so scary and so you. It’s your history – THE BIG GATA PROBLEM☹️. I’m so sorry, even though we knew it would happen. It’s just awful to physically see such dismally low numbers. We know the counts will come up. Waiting, and patience are overrated. Otherwise, listen to your social worker: And, recall
    The Colorado Trail. 👍

    Like

  3. Marit – you are the epitome of someone who has been challenged with facing hard things throughout your life. You will get through this challenge too and come out on the other side , ready to take the next steps in your already amazing life. It’s clear that your team at the NIH is highly skilled at knowing what to look for and shepherding you through the process, so they will continue doing their magic to carry you forward. Remember that you are loved and cherished by all of us!!! 🐕😻🐕😻😍

    Like

  4. Two nights ago I had a dream. I was sitting in your hospital room and then I got up and straightened your blanket and hugged you. Then I realized we aren’t supposed to hug anymore (pandemic) and stepped back. So a dream hug is the best I can do. Apparently the dream was a combination of Prague and your current hospitatlization.

    Like

    1. Hi Grace! It was so wonderful to see this note. It melted my heart. Yes, I have memories of Czechoslovakia and my time at the NIH is an interesting bookend to that. I would absolutely love that hug! Question – how old was I in your dream?

      Like

    2. You were little like in the Prague hospital. Tears are coming now. Your Mom and I used my Dr. title to get in, otherwise no one was allowed in your room.We spent much time looking in at you from outside your window. Now you have another birthday! Hi from Keith too. Love,Grace

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s