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


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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An Open Fan Letter to Roxane Gay

Since hearing an interview with Roxane Gay on Fresh Air, I have been obsessed with watching or listening to every interview with her that I can find. Her point of view is refreshing and relaxing because she’s not trying to be an example to anyone. She’s just trying to be herself in a body that many in society dismiss at a glance. As a person in a disabled body, I can relate. Nobody cares about disabled people. That point was driven home just yesterday, when Capitol police dragged protesters out of their wheelchairs to jai.

Roxane Gay is a model to me, because she does a better job than I do of giving an honest portrayal of what it is like to live in a body that is not sanctioned by society. As she said to  Trevor Noah,  “I wanted to tell the story of my body, because when you’re fat in the world, people have assumptions….I think it is important to show what it is like to live in this world in a fat body.”

When I replace the word “fat” with the word “disabled’ I see we have the same goal. I am further from my goal than she is from hers. Her achievement shines light on where I need to go.

I am always trying to make my site accessible to people who can’t imagine what it’s like to have MS. I want to be that example of a person trying her hardest every day to overcome. But I’m afraid that in my quest to be a create a palatable persona, I might be neglecting the complexities of living with MS, a debilitating illness that has no cure.

For instance, I was very eager to post the image of myself zip-lining down a volcano in Costa Rica. That moment was a dream come true for me. I’m a person who has a hard time walking. Why wouldn’t I want to fly?

I felt chastened, though, when I came home and someone told me, “I have to show that picture to my son with MS. He would never zipline!”

I hate the idea of my blog existing as a rebuke to people with MS who don’t have the financial resources or the supportive spouse that make my adventures possible. I know what team I’m on. I also know what team would never choose me. (I’m looking at you, Mitch McConnell.)

I’ve been thinking about the images I share on this blog, and on Twitter. My profile picture on Twitter is of me in mid-jump. You might think from this image that I’m a super-athlete. In a way, I am. But that’s just because moving anywhere near normally is a lot harder for me than it is for the able-bodied. My legs can feel very heavy to me, because I can’t control them terribly well. If you’ve ever had to move a full-grown human being whose body is not attached to your central nervous system, you might get the idea. I can be dead weight to myself. So yeah, I often do feel a great deal of accomplishment by merely crossing a room. The closer I get to appearing to move normally, the more I feel I’ve gotten away with something. But this is what I fear: by aping normalcy, I am rejecting the very people whose daily experience I actually share.  Today I am posting a picture of myself not flying, not jumping, but squatting, as I take a break during a jungle hike. You will notice I used walking poles. I myself want more images of people using walking poles out here in cyber-space, so that people like me, who need them, can feel more comfortable about using them to go a little further in this world.

I am very eager to read all of Roxane Gay’s books. I am also eager to try harder to be true to my own experience, which isn’t all transcendence. Let me know when I fall short.

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What’s Wrong With This Picture?

Bad Decision

Yesterday my friend Monica and I went kayaking on the Miami River. When you read, “kayaking,” you might get the impression we were paddling madly. We were not. We were just two women of a certain age, bobbing along on a still lake, dipping our paddles occasionally as we chatted.

Monica and I met at a yoga class for people with MS. We’ve both had MS symptoms for decades. We share the same neurologist, Dr. Z. MS gives us a lot to talk about. I told Monica how much I admired her decision to stay away from MS medications, despite Dr. Z’s recommendation to start one. I think she’s been managing her disease really well. Monica runs her own business. She can hike for miles. She can drive without hand controls. She can put on a sneaker while standing on one foot. If I could do those things, I’d consider myself pretty well cured.

Monica told me she admires me for being brave enough to try experimental medications. I assured her I haven’t been brave, only desperate.

I would be oversimplifying to present us as taking opposite tacks. If you were to draw a Venn diagram of our approaches to MS, you’d find a pretty big overlap in the center. We both do yoga. We both experiment with controlling MS through diet; me in a clinical trial, and Monica in the privacy of her own kitchen. We are both total strivers, still hoping to get healthier, not sicker, as though we weren’t aware we have a degenerative disease. What’s our secret? Delusion, we agreed, laughing. Every day, we push forward, not necessarily ignoring the bad stuff, but not letting that stuff define us either.

When I observed that we’d been under the sun for a while, we paddled over to a shady spot, being the proactive types who wouldn’t ignore the sun and overheat, thereby triggering our MS symptoms.

Monica took a picture of me in my rented kayak, wisely sheltering beneath an overhanging tree. I’d made a good decision, right? Nope. I’d made a bad decision. This morning I’d woken up itching.  Turns out, I’d been nestled in poison oak. I’m not saying I would have been better off heating up in the middle of the lake. But maybe I should have chosen to not shelter quite so deeply in the shade.

Here’s the thing about living with MS in these times: there are many treatment options to choose from, including the option to not medicate. Smart, conscientious people can labor over these options for days, or even years, yet make a choice with grim consequences. When I was a little kid, I used to think I’d eventually recognize the bad option when I saw one. Boy, did I underestimate the complications of this world.