Thursday, January 28, 2016

Scanxiety


After Bowie died I saw this quote a lot, maybe too much, the specter of a follow up MRI looming over me. "When are you going to do it?" everyone asked me, and I would try to shrug it off. "I'm too scared," I would say, feeling that by admitting that I was doing enough as it was. After all, there were no doctors insisting I had to. Because I did not partake in the U.S. clinical trial but had my hematopoietic stem cell treatment in Israel, I am kind of on my own here. Did it work? A question that can only be answered in the negative, which is the suckiest kind of question there is. The only test that would give me any answers was an MRI, and only then would it tell me if it did not work. So I didn't get one.

6 months went by. It was July then, and I certainly didn't want to cast a shadow on our summer. We went to our family reunion in August. I didn't want to deal with it then. September, school year, then the holidays. After Christmas, I told Bryan. I'll do it after Christmas. Well fuck me if Christmas didn't come and go. We took the tree down and I still hadn't scheduled it.

Bowie was right about fear. It was there as I played MagnaTiles with Ozzy on the carpet. Why do I feel that tight band sensation across my torso? What's that? Walking to work wondering if my legs felt heavier than the day before. Every single second splintered with the gnawing dread of please god no in my stomach. Did it?

Finally Bryan said I owed it to him and the kids to get the MRI. He said that we can't be in denial. If it didn't work then we need to be proactive about next steps. Of course that got to me, the kids. I certainly didn't want to do it for myself, but I had to do it for them. Fucking kids, man. Whether it's trapping a spider under a glass or getting a brain, cervical and thoracic spinal MRI with contrast gadolinium dye, they kind of make you have to be brave.

So two weeks ago I scheduled the MRI for this morning, telling myself I could cancel it at any time. Then I proceeded to not be able to eat, to sleep. I pooped a lot. What can I say? My fight or flight response is strong. This morning I woke up at 4:30am not able to fall back asleep for my 7:15am appointment despite the Excedrin PM I took. The best way to describe how I felt is a bit of a cliche, but it's spot on: I wanted to crawl out of my goddamn skin. 

By the time I got to my MRI appointment my teeth were chattering. I signed all the usual papers, made small talk with the technician as she loaded blankets on top of me thinking I was cold even though I was actually a little sweaty. Then I spent 2 hours inside the tube, you know, just me, the banging clanging beeping of the MRI, and my thoughts. My fucked up, anxious, worst-case-scenario thoughts. It was a time.

I should just cut to the chase, shouldn't I? We will email your results either today or tomorrow, they said, so what I heard was refresh your email every few minutes because it could be right now. Or now. Now?

Now. First I got the results for my brain scan. Normal. No new lesions. Stable. All the words I wanted to hear. And then I waited for the spinal results. Refresh. Refresh. Refresh. Freaking out that they were taking longer. Would it take them longer to type up a report on new activity? Then I got that email, and you know the other cliche about the blood draining from your face? Also true. I opened the email: Normal. No new lesions. Stable.

And then I fucking lost it. Crying, shaking, happy. I called my dad who started sobbing on the phone (sorry to blow your cool, Dad). Bryan all shiny-eyed. All of us stunned with the relief of being able to cry happy tears for the first time in a very long time.

You guys. It worked. My treatment. I know I said that the MRI would only be able to tell me if it didn't work, and that's still true, but so is this. It worked. For now. My MS is in remission. Yes, I could probably go through all this teeth-chattering-poop-inducing-anxiety in a year or so and get another MRI, but most people who have HSCT only get one follow up MRI, then opt to have more only if their symptoms get worse. 

So if the lowest depths of misery is living in fear, then what does it mean when you conquer that fear? Everything. It means fucking everything.

With so much love and gratitude,
S

p.s. If you or anyone you know has MS and are curious about the treatment, here's a recent article on healthline.com about the U.S. clinical trial performed by Dr. Burt at Northwestern. It is difficult to be accepted into the trial or treated off-trial, but there are also many international centers that offer HSCT for MS and other autoimmune diseases. If you would like more info, please don't hesitate to email me.

28 comments:

Kellygirl said...

*BALLS* - This is absolutely wonderful news. I'm so glad that you did the MRI and that you heard what we all wanted to hear. You are amazing!!!

Jen said...

Susannah! I'm SO happy for you! To have to have gone through all that and have it work...truly a gift. xo

Anonymous said...

Fuck Yeah!!! Reading this made my day... You Rock.

Anonymous said...

Thank you so much for your fabulous update! You are so very brave...so proud of you. Big hugs from Kansas!!!

A Perfect Gray said...

YES!

Gwen M said...

You just brought tears to my eyes!!! Awesome news!

Gwen M said...

You just brought tears to my eyes!!! Awesome news!

Zakary said...

EFFING A.

Anonymous said...

So wonderful! Congratulations. That is incredibly good news! ~Ol' neighbor K

Maggie May said...

Wonderful news, Susannah!

Mr. X said...


Wonderful news, Susannah. I'm truly happy for you and your family. You did it.

May you have many more healthy years and value every moment.

Much love to you and your family.

Mr. X

Kelly Shire said...

So, so happy for you. Just so happy.

SH said...

Fuck yes.

Anonymous said...

Thank god. So, so glad.

Petunia Face said...

Thank you all so so much. I can't even with how happy I am. And thankful. For my health, yes, but also for this community, and my real life community. I am so crazy lucky.

Love, love, love.

Gabrielle said...

Amazing news! Congratulations and I hope everything just gets better and better from here.

Molly said...

Air punch!
Fuck yeah!
So pleased for you all. Please give Bryan an extra bump on the arm - I'm sure he's had those sweaty anxious poopy moments waiting for this too.

Lacey said...

AWESOME news!! Yay! I can't even imagine the sense of relief you must feel right now!

Anonymous said...

I have goosebumps. Such good news!

Anonymous said...

Yaaassssss, Queen! Incredibly awesome news! Here's to you!!!
-Susan C

priscilla said...

Crying here. So happy for you.

Anonymous said...

Congratulations! You took the risk and it paid off! I am so elated and happy for you šŸ˜

Sharon said...

Congratulations. I don't know why we are always so astounded when things work out. It's that whole, "expect the worse" mentality. But sometimes things just go right.

Nancy Fastenau said...

The best news ever! So glad you took the plunge and had the courage to follow through.
We are all so proud of you. And so happy to have many more years of you!

e.gray said...

Smile-crying! So glad this was the news you received! I hope the stress can lessen a bit!

e.gray said...

Smile-crying! So glad this was the news you received! I hope the stress can lessen a bit!

Cathi said...

I'm so happy for you and your family, Susannah!!

Aaron Grover said...

Yes! Great news. Keep going and be positive.