Teetering on the Edge of TRAP-MS

On my most recent trip to the NIH, I was hoping maybe I would be disqualified for the TRAP-MS study, which evaluates four existing FDA-approved medications for their potential to reverse progression in multiple sclerosis.  I don’t like that I have disease progression, and therefore qualify for the study. But if I am someone whose MS is progressing, I like the option of being first in line to take an FDA-approved medication that might help.

This was my second six month check-in to establish a baseline on my status with my new MS drug, Tecfidera.

Before I flew out, Dr. W, my NIH doctor, told me there was a  chance I’d test out of the trial, since I didn’t have much progression to medicate.  I wasn’t as optimistic about my lack of MS progression. My fall this January didn’t just fracture five bones in my face—it fractured all the routines I’d set up to live as healthily as I could with MS. I’d only just started going back to the gym. I hadn’t yet returned, wholeheartedly, to the Wahl’s-ish diet I’d been following.

During my summer exam, Dr. W had clucked at my balance— “your balance is shit”—and the lack of resistance in my right leg:—“so weak.” What would my balance be like after two months of not daring to challenge it? What would my strength be like after two months of barely any dog walks and zero visits to the gym? Thankfully, this setback didn’t prompt an MS relapse. But if there was going to be a time when my MS might be progressing, it would be now.

I’d been instructed to “take it easy” before my clinic visit. But that morning, I had pushed myself to the verge of immobility.

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As I entered Building 10, my spirits rose.  Maybe it was the profusion of plants, or maybe the profusion of people. I noted there was new art on the wall.

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I noted there was still no additional entry in the display of Presidential Visits.

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Luckily, the first appointment on my schedule was at Phlebotomy, which involved sitting, first in the waiting room, and then for the needle. That gave me some time to recover from all the walking I’d done through the airports, the Metro, and the NIH campus.

When my number was called, I got the same needle master as I’d drawn on my visit the previous summer. I recognized the fan letter he’d posted about his ability to make a two year old smile while drawing his blood.

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The testimonial hangs strategically at eye level of the person waiting to get their blood drawn. It is terribly effective at arresting any impulse to cower or cringe. Nobody wants to come off as a bigger baby than a sick two year old.

Did I, like the sick two year old, leave smiling after having my blood drawn? I doubt it. I’ve not been known to smile until after I’ve had my second breakfast.  I soon discovered that my favorite cafeteria—on the second floor in the new building—was closed for remodeling. I found my way to the alternate cafeteria in the basement of the old building. I loaded up on greens and root veggies and proteins. The meal provided all the rejuvenation I needed. By the time I stepped off the elevator on the fifth floor and rounded into the clinic, I no longer had a limp.  Seeing Diane, a nurse I’ve known since my first NIH visit, put me in the mood to smile.

Since returning to real life after my big fall, I’ve become accustomed to being greeted with “Your face looks good!” If I chose to take “looks good” as meaning anything more than “not permanently damaged,” it is because I latch shamelessly onto the positive.

Diane obviously didn’t get the memo about the five facial fractures. Instead of saying, “Your face looks good!” she greeted me with a hug and a frank assessment. “We’re getting old!”

True enough! I, for one, don’t mind looking (or getting) old. I’ve earned my silver stripes. Besides, those strands provide an instant, socially acceptable explanation for a slow or unsteady gait. It’s not that I am MS closeted—it’s just that not every distressed person stuck behind me on the staircase really wants or needs an explanation of the ravages of autoimmune disease when an assumption about the ravages of age will do.

Diane didn’t look any older, and I told her so. Diane is remarkably stable. She just doesn’t change. Case in point: the day I met her, she had just won a prize in a weight-loss competition between nurses on her floor. Here’s the catch: Diane had won by losing a mere pound and a half.  If Diane has had any weight fluctuations since then, they have probably been within the same range. Diane has had the same haircut as long as I’ve known her: same bangs, same color, same length. Diane stays Diane. I wouldn’t want her any other way.

Jen, the other dear nurse I’ve bonded with from the start—swooped in to agree with Diane’s assessment, “We are getting old!” as she grazed my cheek with a kiss. Jen’s hair was red that afternoon—her hair is a new color, a new style, every time I see her. Jen tends to pretend she’s disorganized or absentminded or late. True to form, she crafted an overly-elaborate explanation for why she couldn’t linger as she dashed off down the hall on her sturdy Doc Martens.

Diane wondered aloud, “How long have you been coming here, anyway?”

I guessed, “Maybe nine or ten years.”

Diane pulled up my file.  “Since 2010. Nine years.”

When I’d first come to the NIH, I’d been chasing daclizumab, the only drug that had managed to stop my MS relapses.  After the NIH had requisitioned all the supplies of it, I was more than grateful that there was room in the trial of the drug for me. For the three years of that trial, Diane and Jen had taken my weight and my blood every month. Once that trial was over, I was permitted to continue to take daclizumab though the NIH “safety study” while we all waited for the FDA approval. I flew in every six months for monitoring and new drug supplies. Once the drug was approved, we took what may yet be a final group photo.

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Thanks to TRAP-MS, we were back together again.

While Diane was at her computer, she got a notification on my labs. She scrolled down two screens of data.  “Your labs look good.”

I thanked her, and told her how, the last time I’d visited, I gotten my lab results on my phone just as I was about to get on my departing flight. The cholesterol was marked in red, and looked way high. I was freaking out that the diet I was on was going to give me a heart attack. Doctor Google hadn’t been much help.

“Stay away from Doctor Google. You should call us when you have a question.”

Diane scrolled up, “Your good cholesterol is what’s really high.”

Then Linh, one of the graduate students, stuck her head in the office. She was ready to give me my tests.

We started with the timed 25 foot walk. Considering I had been limping just an hour or so earlier, I wasn’t optimistic about the outcome. Still, I’ve been conditioned to give these tests my all, so when it was time to march from one masking tape line to the other, I barreled along the hall like I was on my way to lift a screaming baby out of a vat of boiling water. Then I turned around and barreled right back. My fear of falling paled in comparison to my fear of failing. I did not fall.

I announced, “My healthy appearance is a flimsy veneer.” Like the NIH don’t know that. Test by test, I went all out, competing with my better-rested summer self.

As Dr. W. examined me, she seemed gentler than last time. She didn’t push as hard for the resistance tests. She didn’t chide me for being weak. When I messed up on the heel-to-toe test, she let me re-take it. Twice. Not that I did any better.

Overall, Dr. W was enthusiastic about my condition. She told me maybe the rest I’d had was doing me some good. Or maybe the Tecfidera.

When Dr. W. called a few days later with the results of my visit, she assured me the MRI looked stable. She told me I’d actually performed better on some tests, like the peg test, than I ever have. But overall, my numbers still nudged a bit in the direction of progression. As long as there is a progression of my disease, I will continue to qualify for the study,

Dr. W wished me luck in getting disqualified from the study when she sees me next time in six months. As much as I love this crew, I would love to be too healthy to see them.

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11 thoughts on “Teetering on the Edge of TRAP-MS

  1. p.s. I liked this post 10 times but it won’t register that I “liked” it. Hmm… just in case you’re wondering where all the love is, it can’t get by the “Like” button.

    1. Sorry for that! I don’t check in to WordPress very often, so I didn’t give myself the opportunity to “approve” the like. Maybe it will work now. Thanks for love!

  2. So, how’s it going with this study, Ms. Lab Rat? That is so interesting that there are four drugs that might stop or reverse progressive MS. Of course, I hope you disqualified from the study due to better health. And that you don’t have time to write any blog posts because you are too busy attending writing residencies, teaching, and publishing. 🙂

    1. Three months later..I read your comment. Thanks so much for reading! Did I go to a writing residency? How about a long weekend in Michigan with other writer friends? No time for blogging? I did go to China in May, and St. Paul and Fargo in June. I hope to blog about the China trip soon. I wrote some stuff I haven’t posted, because I’m sending it out to literary magazines. But the main reason I haven’t posted is that I’ve had UTI’s (or the same UTI) all summer. I have to pee very 1.5 to 2 hours, which is wreaking havoc on my sleep and my mental clarity. As I write, I have a temperature of 99.9, which is not so swell for anyone, but especially not swell for those of us with MS, as our symptoms percolate in the heat.

    2. I go back to the NIH on Wednesday and they will assess me to determine whether they are going to wedge me into the relapsing/remitting category or the secondary progressive category.
      I am so so very sorry I was oblivious to your comments for months now. If you check my blog now, you’ll see I had a good excuse. I had to pee.

  3. Thanks for the peek inside the halls and into the hearts of your supporting cast of characters. If you are going to progress, glad to see you do so at a snails pace and under the watchful eyes of those who have a decade invested in you.

  4. Wow. They look like such happy workers at NIH! Practically European. And honestly, if you hadn’t written about the facial fractures, I wouldn’t have guessed. (As for silver, I was just noticing mine — it’s so sparkly! — and thinking, I have party hair! And it just happened by itself!) And I think you shouldn’t need an excuse for moving however you move. It’s how you move. Other people can wait or go around, that’s fine. I was thinking about this at O’Hare last weekend — those TSA lines are organized on purpose, I think, for humiliation — they want you stripped of dignity and self-possession. No matter how fast you move to do an awkward thing, you’re too slow, you’re holding up the line. O’Hare now has the first humane security-bins thing I’ve seen, where there are no lines, just a series of separate stalls all down the line where you can take whatever time you need — but people are so conditioned at this point to do the strip-under-pressure-and-get-sockfooted prison-line thing that they’re still racing, panicking. These are our airports. They’re for us, not underpaid guards or overpaid DHS secretaries or manufacturers of security equipment. So I went deliberately slowly and easily, folding my things and chatting with the guard, to show people on either side that this is a possibility.

    I was thinking too about how cardinal sins differ, place to place, and how they translate to various situations. If you grow up even partly in NYC the worst, most antisocial thing you can do is to be *in the way*. Do not jam up the works, do not be oblivious to the works. There’s obviously much more physical room most places in Iowa, but I find the whole construct translates in my head to any kind of works. Even at work. Don’t make extra steps for people, don’t derail, don’t sit down in the middle of the metaphorical sidewalk for a picnic or a therapy session. But even in the middle of that there are privileged positions. The old lady with the walker is always allowed to take up the middle of the sidewalk: she owns it, you go around. You hold the door for the young lady with all the packages and children. The bus can take the extra minute and kneel for the guy who has trouble getting up the steps. These things are also obligatory because without them we’re a terrible society, not a society at all. Take the privilege of moving how you move, which God knows you’ve earned — you own the staircase, others can go around or wait — and don’t forget it allows other people to remember to notice other people, which it’s easy to forget to do some days.

    The curious other thing is that your own self-assessment differs so much from your labs and tests, and then there I am caught between three things: how frustratingly limited is the six-month snapshot; how worrisome is the idea of constant massive data monitoring given the social obtuseness of the people who tend to be interested in collecting and storing that data; and how often is the difference between tests and self-perception awareness of something not being measured by others, and how often is it self-misperception.

    How do you think you are? I hear more worry in your last two posts than I have in a while.

    I’ll write for real soon, on paper. When the semester’s over, I think.

    1. This was such a fabulous comment and I’m reading it for the first time in August. I guess my email notification for comments hasn’t been working. I am hoping to bop up to Iowa City in October for Connie’s party. I hope to see you then!

  5. This was a really good read. Sounds like you have a good relationship with your nurses. How far did you travel for this? My hospital is about 5 mins drive. I’m in UK. Wonder how it differs where you are? I see a consultant every 2 years. After 20 years I am secondary progressive. You look to be doing well I hope whatever meds you are on continue working!

    1. My local hospital is a five minute drive, too! My flights to the NIH are short— just a little over an hour. They pay for the flights, and I get to keep the frequent flyer miles. This study is designed to alleviate the cellular damage in people with secondary progressive MS, so maybe some day this will be useful to you!

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