First visit to Chicago

July 26th, 2015

T minus 7 days.

The nurse emails me back – she doesn’t know if I am a good candidate. If I have an enhancing lesion on a recent MRI, then it’s a go. Do I have a recent MRI?

“No. I haven’t had one in years. It costs me $700 to find out that I still have MS.”

Turns out, I can do one here in Raleigh – but if I am a candidate, I’ll have to repeat it in Chicago. they have space on March 16.

So now, I have another decision to make. I figure that the chances that they will find an enhancing lesion are slim. I give myself a 25% chance, apropos of nothing but my own gut. Then, is it worth the expense to travel all the way to Chicago and have an MRI done? There is an added bonus that they will meet me. I think that maybe if they meet me, I’ll stand a better chance of making it in. I don’t know why I think this. I spend about four hours agonizing; this decision makes me sad.

My MS has made me sad for a long time now. I hide it well. Doing this will make me vulnerable. It will mean that, yes, things are bad enough that I am considering chemo. I talk to Chris about it. He thinks I’m right, that I have a better chance if I go in person, so I go. I arrange to say with my friend, Heather, who lives in Racine while I’m there. I don’t ask Chris to go. I’m a big girl. I got this.

I feel very efficient and responsible taking the train from Midway airport to Northwestern. See – I’m a grown up. I can do this all by myself. The schedule is fly in Monday for MRI, meet with Dr. B on Tuesday, meet with Dr. Burt on Wednesday, and fly home Wednesday night. I find the place where I am to get my MRI, put on a hospital gown, and stay perfectly still for almost 3 hours in the MRI machine with one break. I’m not sure what to wish for – do I wish for my disease to be active – to be getting worse right this second so that I can get into this trial? Yes. Amidst all all the noise of the MRI machine, I send a small hope bubble into to air. I wish for a small enhancing lesion to appear.

At the end, I call Heather and tell her I’ll take the train as far north as I can so she has less driving to do. I secretly wish for company as I work to find the train.

She meets me; she’s happy to see me and has brought travel wine for the drive. I’m happy to see her, but I’m also anxious.

In the morning she goes with me to see Dr. B. He asks about my symptoms and I tell him about my weak left side. Is that all? I tell him about the deadly embarrassing bladder and bowel issues, but tell him that it’s okay. They’re mild. Is that all? I tell him about the typos, the mixing up words, the trouble remembering things sometimes. But it’s all very mild. He’s very kind, and he leaves to look at my MRI results.

When he comes back, he seems agitated. He tells me that women do this; they belittle their symptoms, but that I should take myself more seriously. He turns away 80 people a day for weakness in their leg. “Weakness in your leg, no big deal, you get a cane.”

I’m trying to keep my face together. All the muscles in my face are contorting so that I won’t cry.

“But your cervical spine lights up like a Christmas tree. You, my dear, are head for disaster. Dementia, diapers, a wheel chair. ”

I look sideways at Heather. She looks like she’s been slapped. I stare straight ahead and ask. “Did you see an enhancing lesion?”

“Maybe. I’m not sure.”

“So what happens next?” I feel like if I don’t hold perfectly still, my face will melt off.

“You see Dr. Burt tomorrow. He’ll look at you, we’ll talk, and we’ll make a decision.”

He can tell I’m upset, and he touches my knee. “Take yourself seriously tomorrow.”

I make it all the way down the elevator before I let myself cry. Then I am sobbing. Heather is crying too, and she hugs me. “C’mon,” she whispers. “Let’s go get drunk.”



 This is us, midway through that process.


5 Responses to “First visit to Chicago”

  1. Peter Link on July 26, 2015 11:22 am

    Karen — Thanks so much for writing and sharing. Not only because you’re such a good storyteller (you really, really are!) but also because we’ll want to be supportive in whatever large or small ways we can. I’m sure we’ll chat soon. In the meantime, I’ll be looking forward to T minus 6… –Peter

  2. Janet AlJunaidi on July 26, 2015 11:30 am

    Ohhhh. So far, it sounds like you’re in good hands with this Dr. B.
    And thank you Heather.
    And good decision Karen to go there yourself.
    Lots of love!

  3. Scott Barolo on July 26, 2015 7:31 pm

    That was a gutsy thing to do. This situation sucks, and you’re handling it beautifully.

  4. Marjorie Light on July 27, 2015 12:36 pm

    Karen – From the moment I met you, I knew you were a PERSON OF CONSEQUENCE -someone who makes things happen, a person of action, a fountain of enthusiasm. If anyone can whip MS into submission, it’s you (with the help of your medical team). You are a Wonder Woman.

    Call or text or email or DM me. I’ll help hold you up and buffer you while you get both of your legs back to 100%. <<>>

  5. Pat on July 28, 2015 10:40 pm

    I like Dr. B. already. (And Heather.)

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