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.

As I entered Building 10, my spirits rose.  Maybe it was the profusion of plants, or maybe the profusion of people. IMG_1374I noted there was new art on the wall.

IMG_1379

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

IMG_1380Luckily, 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.

IMG_1337 2The 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.

IMG_4207Thanks 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.

Advertisements

Buses and Automobiles

Thirty years ago, I was introduced to a guy at a party who said he was a writer.  Reader, I married him. His non-fiction sketch, Bus Portraits, got published this morning by X-R-A-Y Literary Magazine. The physicality  of this piece knocks me out. And yes, it does belong on a blog about disability.

Tom Grogan, a writer in my Tuesday workshop, recently wrote an eloquent essay about the pain and loss he felt when he gave up driving. It was published by the Cincinnati Enquirer.

As far as I know, the two men have never shared a bus ride together.

IMG_0016

IMG_0038.jpg

TRAP Reboot

My husband and I are waiting at our gate for our flight to Dulles. I’ll be back at the NIH (National Institutes of Health) tomorrow morning at 7am to start anew with the TRAP trial.
This trial is exciting, because it is trying to address the woes of those of us who are no longer deriving much benefit from MS drugs.

MS drugs are most effective when they are started very early in the disease process. Over time, their efficacy declines. While FDA approved MS drugs have varying rates of success at preventing relapses, none of them are all that great at penetrating the brain tissue, where inflammation hides. The longer you have MS, “compartmentalized inflammation” insidiously drags you down, even as your MRI shows no new lesions.

The TRAP trial is investigating four inexpensive time tested medicines to see how effectively they work to counter the stealthy decline within cells in those of us with the progressive form of the disease.

The four drugs are: Pioglitazone, Montelukast, Losartan, and Hydroxychloroquine.

The trial is testing the performance of these drugs when taken alongside standard MS drugs, so as not to abandon whatever potential benefit the standard MS drugs may confer. When I’d first signed up for the trial, I’d been on Zinbryta. When Zinbryta got pulled from the market in February, I was instructed to stop taking the supplementary medication from the trial as well. Now that I am on a steady course of Tecfidera, it can be paired with one of the four investigatory medications when I start the trial anew.

Tomorrow they will be running a battery of tests on me at the clinic. I will be interested to see if I’ve been on a plateau since I stopped taking Zinbryta and the TRAP medication, or if the plateau has been…dipping a bit. No matter what news I get, I’m going to keep running up the down escalator as fast as I can. I’m not going to passively rely on medication. My own wellness program includes: a Wahls Diet, so many supplements, mini-weight lifting, meditation, yoga, walks with the hubby and dogs, deep friendships, and meaningful work that supports others.

Which reminds me, thanks for reading this blog. And deepest thanks to those who have endorsed my nomination for Patient Leader in the #WEGOHealthAwards, as well as those who have gone so far as to link to my video. Reading your passionate testimonials makes me feel like Tom Sawyer spying on his own funeral!

A Pat on the Back from Ms Lab Rat

On June 23, I finally realized I shouldn’t reduce my blog to being just about me as a person with MS. I’ve got a lot more going on than a chronic disease. When I’m not telling my own stories, I’m working to help others tell their stories. And often enough, my students have successes that ought to be shared. I vowed on this post,  ” From now on, when one of my students deserve a pat on the back, I’m going to go ahead and pat.”

Guess what?

A long time member of  The Clifton Writer’s Workshop, a group I facilitate, just had a fine editorial published in The Cincinnati Enquirer.

I do hope you follow this link and read Andrea Rotterman’s nuanced piece about a her dual roles as gun owner and gun violence survivor. She labored over this essay, because she wanted to get the details right. All too often, the press presents gun ownership as an issue that is black and white. I love that her editorial ends with questions, not answers.

Does a link to an editorial on gun violence belong on a blog about multiple sclerosis? Gun violence is a more pervasive health problem in this country than multiple sclerosis. There’s only about 10,000 new MS cases diagnosed a year. The CDC published data showing 38,658 gun deaths for 2016, including suicides. It seems to me it should be easier to eradicate gun deaths than it’s been to eradicate MS.  But as Andrea’s editorial shows, nothing is as easy as it looks.

I’m so proud of Andrea for joining in our national conversation. It takes a lot of guts!Head Shot

If you like what I do, please endorse me on the WEGOHealth page to amplify my voice and the voices of the chronically ill.  Thanks for reading!

“Look at the Pretty Flowers!”

Setting: Early Evening

My husband is walking our two houndmutts as I, with my sticks, am trying to keep up.

HUSBAND: So what’s the itinerary at the NIH? Do you get the spinal tap the first day, or the second day?

ME: The second day. My last visit they gave me the spinal tap the first day, which was ridiculous, because then I had to perform all the evaluative tests the second day while I was still recovering and had a mild spinal headache, so obviously my scores would have turned out lower than optimal. But in a twisted way I’m kind of happy those scores were probably lower than they should have been, because now my decline won’t look so steep, since this time they’ll be testing me before they drain my spinal fluid.  I’m kind of self conscious about my pronounced decline.

HUSBAND: (Glances down the street.)  Look at the pretty flowers.

IMG_1384 2

ME: (laughing) Like you ever say, ‘Look at the pretty flowers.’

We walked on. It was a pleasant walk, after all.

IMG_1392

There are a lot of pretty flowers in our neighborhood.

IMG_1389

IMG_1390

The Overgrown Road of Laupāhoehoe

To live successfully with multiple sclerosis, you must become an artist of improvisation. You never know when (or how) your body is going to horrify you next. MS is, I dare say, a master class in mortality. Gentle reader, we are all on the same conveyor belt, heading for the same destination. Some of us just get to have a more challenging experience resisting the inertial pull as we dodge hostile takeovers on random locations throughout our nervous system.  We need to be flexible. We need yoga. And that is why, every morning of my stay at the Temple of My Dreams, I’d leave the downstairs living quarters and make my way up the stairs, and then up the ramp, to the second floor entrance to the yoga studio.

upstairscloser to temple

Once I reached the pillars, this is a glimpse of what I’d see to my left:

sideglance

I wish you could hear the ocean, as I did. Or the breezes. Or the birds. I would sometimes see glimpse a cat (or two) on my approach to the temple entrance on the second level.

cataround temple

The temple itself was inhabited by a black cat.

waiting cat

This cat is apparently very used to partnering in yoga.

yogacatat fe

Ostensibly, the cat and I had the studio to ourselves. But if you’ve ever taught me yoga, or shared a pose with me, be assured, I snuck you in, too. The studio was spacious. And full.

There was a reason our family had chosen to visit The Big Island. When my husband graduated college, he and his dad celebrated with an epic two day climb / one day descent of the massive volcano, Mauna Loa. What better way to celebrate our son’s graduation from Vassar than to follow this tradition? Once we learned our son had signed on with a start-up in Beijing, it seemed only logical to give him a head start on the twelve hour time change with a ten day vacation in a time zone six hours closer to Beijing time. As parents, we’d do anything to ease a transition that is in many ways absolute. We knew our son would be starting a life far outside our areas of expertise. Our opportunities to ameliorate  his life challenges were drawing to a close.

During the planning phase, my husband kept bringing up the issue of what I would do during the Father/Son volcano expedition. Sorry, I am not the volcano vanquishing MS superhero you might find on an advertisement or some other blog. (Though I’d love to be!) I’m a fairly ecstatic swimmer/snorkeler,  but in the past I’ve gotten in some trouble overheating on the beach. My husband is accustomed to being my superhero. What would happen if I were to get stranded snorkeling while he was busy scaling the volcano with our son? His idea was to set me up in some luxury hotel for the haole (white) tourists on the dry side. No thank you! I wanted to choose my own adventure.

Meanwhile, the adventure my husband and son had chosen was going up in smoke—or more accurately—in vog. (Vog being the term for smoke that comes out of an active volcano.) As packages arrived at our house with backpacks and state of the art camping equipment, so daily updates arrived in our in-boxes on the steady eruption from Mauna Loa’s sister volcano, Kilauea. My husband kept expecting the eruption to end. But the goddess Pele didn’t seem to be running out of lava. As the date for our vacation grew nearer, he finally called the Park Service, and learned all the trails were closed. The men in my life would have to cancel their epic hike of Mauna Loa. No problem. They too, are flexible. They, too, have to live with MS. My husband found an achievable walk: an eight mile hike on Pu’u wa’awa’a. Achievable—for them, anyway. I hate to write that my eight mile hike days are gone forever. I’ll say this much: the day of the Father/Son hike, I would still have to find my own way.

But once we arrived at the AirBnB, I knew it had everything I needed for a blissful day on my own.  I could do yoga, at my pace. Break for writing. Break for meditating. Break for sitting on the lanai, soaking in the sights and sounds of the garden. Break for walking down to the beach. A five minute walk. An achievable walk. I’d have plenty to do while my husband and son took their achievable hike.

One morning, as I was leaving the yoga studio, I got a text from my husband. He’d taken a walk on an overgrown road that ran along the mountain side of the Jodo Temple. My son and I had refused to go with him. It looked like this:

oldroad

My husband texted that you could see the ocean from the road. The views were incredible. We should come! So we did. The views were incredible.

sticksonoldroad

Sure, there was a landslide to scurry over. But everywhere: island foliage in all its exuberance. Over a low wall of carefully assembled lava rocks: a view of the ocean. And after an eighth of a mile or so, the unmistakable sound of a waterfall. The air got cooler. We found ourselves under a leaf canopy, staring up at this:

1

A little farther along, we stumbled on a second waterfall.

wfall2

My husband said, “All this for us? You’ve got your paved road in the wild. Our own private waterfalls.”

roadback

All that for us. For me. You’d better believe I returned on the day of the Father / Son hike. It was just the perfect mix of challenge and beauty and wild wild wonder. At just the right temperature. Mahalo, Pele. Thank you. It all worked out just right.