My numbers moved

September 23rd, 2015

My white blood cell counts went up. They were < 0.1 yesterday. Today they are 0.1.This is good news, but not great news. The need to go up to 1 before the doctors will release me into the wild. And this number, well, it’s low. The nurse told me that it was unlikely that I will get discharged in time to make the 1:30 flight to Raleigh on Friday. I just changed it to the 9:00 pm flight.


They will take a fresh batch of blood at 5:00, and we’ll know more then. I could be discharged on Saturday, and I just have to be at peace with that.

Some people have asked what happens next.

Imagine that I am a house. I’d be a pretty little seaside cottage if I was a house, and there would be a garden of flowers out front. Now imagine that for the last 14 years, there have been rats in the walls chewing on the electrical cords. I hire a badass exterminator (picture the Grimm Reaper) and kill all the rats.

If this works as planned (and if what I have is Devic’s or Relapsing Remitting MS), there will be no rats and no new holes. This means no progression of my disease. If this is secondary progressive MS, however, then it wasn’t the rats all along, but something else, more mysterious, like moths. In this analogy, nobody knows how to get rid of moths.

The docs suspect Devics, b/c that is what it looks like on my MRI. However, ninety percent of people with Devics test positive for the Devics antibody. My antibody test was negative, leaving this uncertainty.

But, if I’m lucky, we’ve banished the rats and my body will repair the holes on its own. There is no way to predict if this will happen. But for lots of people, it does. I consider stopping the progression of the disease a huge win, and will be over the moon if I actually start getting better. Dr. Burt told me that any improvements I make will be seen in the first two years, and I shouldn’t expect anything to happen quickly.

When I get home, it’ll be back to business as usual. I might get tired more quickly, but I’ll be ready to get back to my life. My immune system will be like it was when I was a baby. I am supposed wash my hands a lot and avoid sick people. Technically, they want anyone who interacts with me to have had the flu shot. In a year, I will have to get my immunizations for Polio, measles, etc. Every cold will be brand new to me.

But this room is large and sunny. Chis is with me. This waiting is not unpleasant. It’s just that I want to go home.

7 Responses to “My numbers moved”

  1. Laurie J. Edwards on September 23, 2015 3:10 pm

    They’re going up & that’s good. Here’s hoping your lovely house will be rat-free.

  2. Jill on September 23, 2015 9:29 pm

    Loving me some white blood cells!

  3. Wons on September 24, 2015 12:30 am

    We are learning a lot from you. Best hopes for a flight home soon!

  4. Laura on September 24, 2015 12:49 am

    Hi Karen, There is Peace all around you and moving through you. That is my prayer for you tonight. I see you whole healthy and well. I love you!!! Laura

  5. Laura on September 24, 2015 12:52 am

    PS: I did not get a notification for this post in my e-mail like I usually do. I had to go to your site and take a look to see if you posted. I notice you do not have any comments other than mine. That seems unusual. I wonder if others did not get the note that you posted?

  6. Melanie Moran on September 24, 2015 11:38 am

    I wish I was sitting with you in that sunny room losing to you at fruitonminoes. (<-creative spelling). You are doing so well and are so strong and beautiful. Come on white blood cells!! I bet those m'f'ers are going to surge any minute now.

  7. Nina on September 24, 2015 4:59 pm

    I can’t wait to see your smiling face. I’ll even get a flu shot for you. I’m glad you didn’t tap out .

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