The Agony of Knowing

In Ocrevus support groups I follow on Facebook, there are almost daily posts from members reporting “no new lesions” from their MRIs with smiley emojis and endless exclamation points. I’m always happy for them, and although I’m not the type who would post about it, I hoped to join their club after my scans last week. Honestly, I was expecting to, even as I simultaneously feared the worst possible outcome.

Unfortunately, I couldn’t write one of those triumphant posts to the group if I wanted to.

I checked for my MRI results yesterday afternoon when my students left, unable to wait until I got home. Seeing that they were finally posted, I braced myself and then read them slowly, several times, my frustration turning into deep despair as I cried in the empty classroom, closing the door to passersby. After I pulled myself together, I made my way home and cried some more with my husband.

There’s a growing lesion along with a few probable new ones on my spinal cord. A “prominent” new lesion on the left frontal lobe of my brain. A smattering of small new lesions on my right frontal lobe, scattered, I imagine, like happier things: freckles, confetti, fallen leaves.

I see my neurologist on June 3rd to talk about where we go from here. Dr. Z may recommend staying the course with Ocrevus and checking again in six months. She may recommend changing medications, though because I started with a relatively strong one, other options are few and come with pretty severe side effects. The fact that my insurance won’t pay for any of them further complicates matters.

But today, my friends, I’m done with crying. Crying was for yesterday, and it was necessary to give in to it then, to feel sad and helpless. This day, however, I’m focusing on all that is going well. I am able to drive and do my job and volunteer. I’m able to cook and play with my dogs. I’m walking every day, taking that time for myself, and after months of hard work, I’m able to go almost as far as I could before a debilitating relapse last summer. I haven’t had a relapse since then, each day without one its own shining miracle.

It’s gloomy and gray–that is to say, my kind of gorgeous–in Nebraska this morning. Soon, I’ll head to the lake to make my rounds, dodging the earthworms dotting the sidewalk, letting the rain fall on my face and my head and my back, my brain and spinal cord and their growing lesions tucked away safely underneath, out of view, my eyes firmly fixed on the horizon.

6 thoughts on “The Agony of Knowing

  1. Kris says:

    Oh Erin, I’m sorry about your results. I wish I could give you a hug right now. As always I love your fierce determination to keep moving forward, showing a strength of spirit that could never be captured by an MRI.

    Liked by 1 person

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