If This Callus Could Talk

I was moving my index finger back and forth from the tip of  Dr. W’s index finger to the tip of my nose—a rote task in a neurological exam—when Dr. W. caught my right wrist and asked, “What’s the story behind this?”

There was a callus between my thumb and forefinger.  “I got that kayaking.”

The story of the kayak trip is more than the story behind the callus. It’s the story behind my marriage. That’s my husband’s take on it, anyway.

The weekend before our twenty seventh anniversary, my husband and I decided to venture out to the west side of Cincinnati to kayak. We decided against the familiar lakes, with their predictable views, and opted instead to rent from an unfamiliar kayak outfit on the Miami River. Perhaps we didn’t read the description of the activity too carefully—or at all.  On arrival, I overheard my husband ask, “How will we know we are at the turning point?” I didn’t linger for the answer. I was heading for the Porto Potty. I figured my husband would receive all the information we’d need.

A very nice older man drove us to the launching area. A very nice younger man set us up with a two person kayak and two life jackets. And we set off down the Miami River.

The kayaking was bliss. Blue sky. Bird song. We spotted a Great Blue Heron, my favorite. I marveled at how easy it was for my husband and I to kayak together, how adept we were at paddling, how in sync in both movement and observation. The weather was cool for the first time all summer. We wouldn’t have to worry about overheating triggering my MS symptoms. As time went on, I took off my life jacket to ensure I wouldn’t overheat. My husband started splashing my neck. We laughed. We rowed.  We saw a bridge ahead. We knew we had two bridges to cross under before the end of the route. I was getting warmer. I asked for a swig of water. Not five minutes later, I had to pee.

An observant reader may be perplexed: didn’t Ms. Lab Rat just use the Porto Potty three paragraphs ago? What’s the deal with her having to pee? Is it MS, is it old age, is it childbirth? Maybe it’s all three.

In any case, we didn’t know how much distance was left between Bridge One and the turning point. We decided we’d reached our own turning point.  It was time to head back.

As soon as we dipped in our oars, we discovered that paddling upstream would be much more rigorous than we’d imagined while paddling downstream. We briefly wondered why the kayak outfit hadn’t pointed us upstream first, to conserve our energy for the tough stuff at the end. And then we quit wondering. We had to use all of our strength to  paddle. Some areas were difficult. Others…impossible. More than once, we experienced the degradation of getting  pulled backward while paddling all-out. We carried the kayak over one rough spot. My husband got up and pulled me through others.

At one point, I had to laugh. My usual work-out ethic has been tempered by multiple warnings from eye care professionals that my left retina is strategically poised to spring out the instant I over-strain. As we paddled upstream, I overstrained aplenty. It’s a wonder that retina didn’t pop. I kept catching myself making bizarre, grotesque facial expressions, as though baring my lower teeth plus rolling my upper lip plus flaring my nostrils plus straining my neck was somehow going move the paddle any faster. I’m going to hazard a guess that my husband also had his moments of unnecessary energy expenditure, like those times he was paddling so hard, he had the boat rocking side to side. As we rocked, I felt useless. Worse than useless. Like unnecessary cargo that could easily jettison.

As we rowed back up the way we came, we passed other kayakers, all of them blissful, laid  back. All of them paddling downstream. They were playing. We were working. Distances easily crossable on foot appeared nearly impassable by kayak. We studied the current, strategized our route—hug the shore here, avoid the rocks there. Toward the end, we agreed to cut straight across the river, and row toward the far side of an island. We made better progress than we anticipated. There on the island was a gathering of Canadian Geese. Spectacular creatures. They looked mildly surprised to see us, but not at all threatened. Yep. We were too pathetic to spook a goose. And too tired to wield a cell phone and take an Instagram. Instead, we focused on rowing steadily to the launch point, trying to make it look as though we’d been rowing steadily, in unison, all along. Oddly enough, there was no one on the banks to witness our show of fortitude. Our kayak nosed onto land unheralded. The very nice younger man was nowhere to be found. My husband pulled the kayak inland alongside its mates and threw our life jackets in the pile and called the number for the kayak rental outfit. They were as surprised as we were that no one was there at the end point to meet us. They told him they’d call him back. A minute later, my husband got the phone call that explained all. Apparently, we weren’t supposed to have turned around—the kayak route went one way only. If we’d just continued paddling downstream, we would have quickly and effortlessly made it to the end. A very nice young lady drove out to pick us up at the launch point. She said, “You must have worked hard.” We needed to hear that. “We’re so sorry. We must not have communicated very well.” We needed to hear that, too.

For me, the trip was a victory. I hadn’t peed my pants. I hadn’t lost my retina. I hadn’t been jettisoned. My bar for victory is comfortably low.

On the drive home, my husband suggested I write a blog post about the kayak incident. He saw it as a perfect metaphor for how we are accustomed to working harder than every other couple, because we are constantly pushing back against MS.

I see a different metaphor. He and I should relax, and go with the flow.

p.s. A big thanks to all the readers who have voted for me in the #WEGOHealthAwards. If you haven’t yet, there’s still time. Follow this link.

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I Am Creating Change By…

Endorse Me! 

There is still time to endorse my nomination as a Patient Leader for the #WEGOHealthAwards. If I were to be selected, I could extend my reach  with movers and shakers in healthcare  to advocate for people with disabilities. 

If you haven’t already, please follow this link to navigate to my nominee profile at #WEGOHealthAwards. Under my picture on the right-hand side of the page will be an “endorse” button. Clicking this button will submit an endorsement. While you are there, take a look at some of the other outstanding candidates. As I understand it, you can endorse more than one person. If you know of an outstanding patient advocate in your community, you can nominate them here.

I am so thankful to The Clifton Writing Workshop members who sat through my first improvisation of this speech. And I am beyond thankful to my friend Maria Ramos, who directed and filmed the final product. If you like this video, please share!

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No Cancer.

I met with my surgeon yesterday. She inspected the pretty scar she’d left me, and we agreed that it was healing very nicely. She told me those suspicious looking cells she’d extracted had turned out negative for carcinoma.
I mistook this for good news. No cancer. No worries. Right?
Wrong. The surgeon asked me if I wanted to know the results of my Tyrer-Cuzick Breast Cancer Risk Evaluation, then ducked out of the examining room before I had the chance to answer. She returned with a four page document that concluded with results she and I read very differently.
She’s the surgeon. She’s got the medical degree. I’m the patient. I’ve got the MFA. I’ve never been good at math.
The results were as follows (capitalization theirs):
“Ten Year Risk:
This woman’s Risk (at age 50): 11.0%
Average women (at age 50): 2.7%
Lifetime Risk:
This woman’s Risk (to age 85) 39.9%
Average woman (to age 85) 11.4%”

Maybe I’m a glass-is-half full person, but even if I wasn’t: the ten year prognosis glass is 89% full. That’s pretty darn full.
The surgeon immediately offered me a medication I could take to fill that glass to 100%—a medication, she swiftly added, that could only be taken for five years.
“No medication,” I said. “I take enough medications.”
“If you want to reduce your risk to zero percent,” she offered, “you can get a double mastectomy.”
I didn’t say, “And lose that pretty scar you left me?”
I didn’t roll my eyes. For while I did think her suggestion was crazy, I understood she was coming from a crazy place, witnessing women being brave because they have to be, as they fight for their lives, and all-too-often lose. I took it as a kindness, really, that she didn’t want me to join their ranks. I don’t think she’s an opportunist, trying to make money from some ounces of my flesh. I went along and booked my appointment for another mammogram in six months.
And then I went about my life. I took my “Freedom from Falls” class in the morning. I ran the writer’s workshop at the Senior Living Center in the afternoon. I told the writers my odds. These writers are in their seventies, eighties and nineties. They’ve seen a lot of life. They’ve seen a lot of death. They all agreed with me: those odds looked pretty darn good. I drove home. I did not update my neurologist. I did not update the NIH. I did not update my blog.
I wanted one day of those numbers looking pretty darn good.
If I go ahead with my plan to switch to Ocrevus for my MS medication, those numbers would go up. There’s a bullet point on the Ocrevus site under “WARNINGS AND PRECAUTIONS”
“• Malignancies: An increased risk of malignancy, including breast cancer, may exist with OCREVUS”
What would my surgeon’s Tyrer-Cuzick Tool have to say about Ocrevus? What will my neurologist have to say?

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Two Letters

twoletters

After many years of dosing myself with Zinbryta on the 15th of the month, yesterday marked Day One of my negotiating multiple sclerosis without the aid of a monoclonal antibody.

My disease has toned down quite a bit since I started taking the drug. Has my MS been mellowing with age—or with medication? That’s been the seven thousand dollar a month question: What is me—and what is the drug?

In a parallel but hopefully irrelevant experiment, my visits to the breast cancer folks inspired me to ditch my deodorant. It took a day to learn that without deodorant, I stink.

It was easy enough to replace the brand I’ve depended on for decades with an equally effective brand that is untainted by propylene glycol and aluminum, ingredients that are potentially carcinogenic yet remain as blandly ubiquitous as the pink ribbons protesting the persistence of breast cancer.

Will replacing one monoclonal antibody with another be as easy as swapping Secret’s “Protecting Powder” for Desert Essence’s “Tropical Breeze?”

The nurse at my neurologist’s office warned me it might take up to six weeks for my insurance company to approve a new MS medication. I chose to see the potential benefit of the delay—I have been noticing that my wounds tend to heal a lot slower on Zinbryta. Perhaps I’ve been lucky to have a mass removed from my breast just as my immune system is getting weaned off an MS drug.

And yet I could not ignore the risk a six-week interval poses: the stakes are a lot higher going off an MS medication than going off a deodorant. MS is opportunistic, and tends to spring into action whenever the body is vulnerable. Perhaps undergoing surgery was the worst thing to do while getting weaned off an MS drug.

The day after my surgery, I got a call from a nurse from my insurance company. I usually regard such nurses as corporate spies. I have no dearth of interactions with health care professionals, or with human beings in general, so such calls do not fulfill an unmet medical or emotional need. But this time around, I did have a need. I decided to play nice. I discovered this nurse was actually more informed than most of the nurses the insurance companies had sent my way. When I found myself searching for the term, “monoclonal antibody,” she supplied it for me, and tactfully assured me I had nothing to worry about when I complained that my facility with language felt somewhat impaired after the general anesthesia. When I told her about the anticipated delay in getting my new medication approved, she promised she’d see what she could do to expedite things.

She was as good as her word.

Two hours later, I got a call from my neurologist’s office. The new drug, Ocrevus, had been approved.

On March 16, Day One of my life beyond Zinbryta, I received two letters from my insurance company.

The first letter denied coverage for Ocrevus.

It’s funny how seeing a letter on stationary can feel more convincing than on one’s own memory. I was tempted to check my calendar, just to confirm that I did indeed have an upcoming appointment for an Ocrevus infusion. Instead I opened the second letter.

The second letter was dated on March13th, the day of my conversation with the insurance nurse. It was a notification of approval.

Thank you, insurance nurse!

I’m so glad I took her call.

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TRAP (part 2 of Ms. Lab Rat’s Latest NIH adventure)

The vast lobby of Building 10 of the NIH was nearly vacant of the usual international mix of medical professionals and imperiled pilgrims, yet it felt cluttered. This majestic bastion of scientific research had been stuffed with numbered tables bearing garish gingerbread houses, presumably made by the in-patients and staff. It looked like a pop-up church raffle. I glanced past the hapless man marooned at the Welcome Desk and noted that the coffee shop was now barricaded by scaffolding. The scent of coffee had been replaced with insidious notes of powdered white sugar. I wondered if perhaps my system of always accepting the first appointment of a given span of available dates would finally let me down. We were three days out from Christmas. The speculation on the van was that the leading physicians would still be on vacation. I didn’t buy into that. I expected to see leading physicians. Then again, I’d also expected coffee.

I ducked into the area on my right to fill out the paperwork for meal reimbursements. Over the years, the reimbursement office has retained the right to perpetuate various iterations of needlessly awkward exchanges. The first few years I’d gone there, the cashier’s desk was an inch or two too deep for the cashier to actually reach the exchange window to grasp a lab rat’s ID or to pass a lab rat some cash. It added a bit of tension, a bit of comedy, to every exchange. After a few years of these capers, the cashier figured out she could use a pincer device to bridge the troublesome gap. Her victory was short lived. By my next visit, the entire office was moved. By the visit after, the “short-armed” cashier was gone.

The tradition of inventive obstructions was still in full force, I noticed. There was a sign in front of the office that receives reimbursement forms which instructed all form fillers to stand at a certain distance in front of the glass door, and further warned that those who did not stand would not be seen. In other words, Wheelchair Users, Begone.

Furthermore, the very layout of the office was designed to prevent eye contact, even with compliantly standing non-wheelchair users. The L-shaped desk for the sole employee in the office was set back and to the side of the glass door. The computer was placed along a wall at a ninety degree angle from the door, so that the occupant of the office effectively had her back to the door every time she looked at her computer. Once again, the office had been created to make it structurally impossible for the employee to do her job effectively.

I wish I could say this office is an anomaly in the NIH. It is not. There are doors in the MS clinic without wheelchair accommodation. If that’s the NIH plan to stop MS progression…it isn’t working yet.

The only other pilgrim there was a man sprawled out on a chair. Had he been conscious, I would have asked him if he needed me to signal to the functionary behind the glass door. Instead, I waited for the functionary to complete her personal phone call, then check her computer screen, then finally swivel somewhat to notice me standing the appropriate distance from the glass door, like a good wheelchair-free pilgrim.

She waved me in.

I used to feel unworthy of meal reimbursements. But that was before the drug the NIH tested on me came out on the market, and my monthly deliveries came with an invoice of seven thousand four hundred and something dollars per month.

I handed in my clipboard, feeling entitled to every last penny, darn it, and headed for my appointment at Phlebotomy.

The acronym for this new study? TRAP.

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Addicted to Trials (Part 1 of Ms. Lab Rat’s Latest NIH Adventure)

My name is Ms. Lab Rat. I have multiple sclerosis. I am addicted to clinical trials.

It had been 32 days since I’d finished my last clinical trial in Iowa City when I slipped out of a white van on a cold December morning and surrendered my coat and my purse to the jocular security crew at The National Institutes of Health in Baltimore, Maryland. When asked by a cheerful ex-navy, “Have you been here before?” I had to smile back. I’m terrible with numbers, but by my feeble estimation, I’d been to the NIH 44 times before: once a month for three years during the trial for Zinbryta, once every six months for the three years it took for the FDA to approve Zinbryta, plus twice for initial trial visits. Gentle reader, chances are your brain is less riddled with lesions than mine. You do the math. Numbers aside, I think we can all agree; I’ve been a regular.

Back when I started the Zinbryta trial, when the drug was still fairly new to me, my life had been much more limited by my disease. I was a regular at my drug store, a regular at the places I volunteered. No one paid me to hang around. Zinbryta stopped the raging inflammation that had peppered my brain with lesions. My relapsing remitting multiple sclerosis stopped feeling so…unremitting. And gradually, I was able to get small but super-meaningful jobs. First I was hired to host creative writing sessions with a uniquely brilliant group living at an upscale assisted living center. I am in awe of the supportive creative community we have maintained. Then I was hired to teach writing classes to radical, relentless, radiant young artists at a celebrated arts college downtown. The younger generation fills me with hope for a more just, more equitable, more dazzling future. Through the years, I have maintained the same prolific community writing workshop. We all publish. Some of us publish quite a lot. Zinbryta has allowed me to expand my identity beyond MS patient, to teacher. When the security guard handed me my one-day NIH ID, you’d better believe I thanked her.

I hopped back into the white van with a couple from Georgia. The husband had spent the trip describing the career he’d had to abandon. “I want to get back to work, do what I can from a wheelchair. But first I’ve got to get this cancer under control.”

I could relate to his frustration. I could relate to his hope. Zinbryta has helped rein in my MS. It’s been necessary. But it hasn’t been sufficient. When we reached good old Building 10, I hopped out of the van. I was eager to get my MS under control.

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Balance of Superpowers

Yesterday, my MS flared up out of nowhere.  That’s how I saw it, anyway, when out of the blue my legs just sank from beneath me. What an insult! I kept saying,”This is so surprising.”

My husband was unflappable. Finally he said, “This is not a surprise. You have MS.”

You would think, twenty three years after the diagnosis,  I wouldn’t need to be told I have multiple sclerosis. But it does still surprise me. I haven’t had my legs drop out from beneath me in months. I’d kind of hoped maybe that symptom would remain in the past.

While I depend utterly on my husband’s acceptance of my MS, I depend equally on my own stubborn denial to ensure I live my fullest life. Denial may be my greatest superpower. Acceptance may be his.

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