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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MS Blog with Boob Pic

Ms. Lab Rat is supposed to be a blog about an intrepid gal who joins clinical trial after clinical trial, surfing on the cutting edge of multiple sclerosis research.
Ms. Lab Rat is not supposed to be a blog about an anxious gal whose left breast is on the cutting edge of a surgical scalpel. But that’s where this MS blogger will be, while The Art Academy is closed for Spring Break.
(I know, I know, I shouldn’t be the one saying sorry. But have you have ever met a person who did not apologize for a physical misfortune beyond their control, be it mild hearing loss, Sorry, could you repeat that?—to terminal cancer, I’m so sorry I won’t live to see my baby graduate high school. You want to say: I’m the one who’s sorry.)
In this case, Gentle Reader, you needn’t be sorry for Ms. Lab Rat—yet. I have health insurance. (Thanks, husband.) I have a support system in place. (Thanks husband/family/friends.) And I don’t have cancer. (As far as the pathologists can tell.)
What I do have are a few cells that kind of look like they could turn into cancer…or look like the type of cells that tend to hang out with cancer cells. The pathologists couldn’t really agree on what to make of these suspicious cells. Which was why it took them a week, and not the promised one to three days, to call me.
As it happened, I got this call just two hours after I’d learned I have severe osteoporosis, and just a half an hour before I was scheduled to teach Artist as Reader. I was in the middle of an enormous copy job, which involved making 17 two-sided copies of the 92 page screenplay of Get Out. The call made me laugh. Two bad health updates in two hours? Who gets that? It seemed too bad to be true. My biggest fear remained the complicated copy job. I really really hate copier jams, especially so close to class time. Trivial frustrations like that are somehow harder for me to take then even super grim news. The printer didn’t jam. I was genuinely relieved, and genuinely curious to see what my students would think of the manuscript. I couldn’t be bothered to update my blog post about my osteoporosis diagnosis with a dramatic PS. I had a class to teach. Besides, my mom reads my blog. (Hi, Mom!) I didn’t want to worry her.
I am now scheduled for a third biopsy, a surgical excision that will scoop out the entire perplexing nodule and resolve any unanswered question. I’ll be glad to be rid of the uncertainty. I’m not yet skilled at living with anxiety. Last night, I had a hard time getting back to sleep after my 4th or 5th fourth trip to the bathroom (thank you, MS bladder.) I tried meditation after meditation, but stayed awake from 2am to almost 4. (I fell asleep just fine after trips seven and six.) OK, maybe it’s time to botox the old bladder again. Do you see how living with MS is in itself a full time job?
I was grateful to have yoga today, to help me unwind and expand, physically and mentally. As I had hoped, I was not the only student at this week’s class for yoga with MS and Parkinson’s. I met two intelligent, ambitious women there, an accomplished artist and an accomplished writer, and best of all, I got to catch up with my buddy Monica. We lingered over our Wahls-compliant lunches to chat about breast biopsies, and so much more. In a few short weeks, we’ll have matching scars.
It seems no MS story is as simple as just one diagnosis. At least, not for those of us lucky enough to be living decades with MS—long enough to encounter the usual trials of mere aging. Maybe Ms. Lab Rat is a typical MS blog, after all.

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