I have a long history of quitting. I quit cigarettes decades ago. At least a dozen times. When cigarettes hit the intolerable price of $1.30, I reached my tipping point. I never bought another pack. From what I hear, cigarettes are considerably more expensive in the 21st Century. My being a quitter must have saved me a fortune.
When I reached my tipping point to quit Tecfidera, it had nothing to do with money. Thankfully. My copay was $0. No one should have to quit an MS drug because they can’t afford it.
My quitting Tecfidera had nothing to do with any conviction I can beat MS through exercise and diet (see photo of my Monday morning breakfast: spinach, husband’s grilled swordfish, asparagus, onion, radish.) I’m doing everything I can, but I don’t expect any cosmic reward. As my dad often says: Life isn’t fair. Chances are, Gentle Reader, you breakfasted on something like half a bagel with cream cheese —foods I’ve forbidden myself from eating—and your immune system merely thanked you for it. My immune system may have thrown a hissy fit over such a meal. Or not. I’ve past the point of taking such a risk.
I quit Tecfidera because I didn’t understand how it worked, or if it worked, or if it would work for me. (Thank you, A., for researching the chemical processes.) I could tell Tecfidera made my skin furious if I didn’t take an aspirin first. I avoid food that makes the MS monster mad. Why would I take a drug that makes the MS monster mad?
I quit Tecfidera because every time I considered I might quit, I felt at peace. The rest of the time, I felt…flummoxed.
So I told Dr. Z I quit. I told my husband I quit. I told the drug company I quit. Nobody gave me any guff. Then I called the NIH.
You’ll need some backstory. I’ll be the first to admit I am a terrible blogger. For years, I’ve ignored basic blogging etiquette, such as adding a photo to a post, or including a provision for comments. For a long while, I’d let my domain name lapse. I could never be bothered to comment on MS blogs that I find inane and boring. Or even comment on ones I find fascinating. I dropped out of Facebook, so I no longer pulled in those followers. Gentle Reader, it’s a wonder you made it here at all. You must have a genuine interest my story, and I thank you. Which is why I apologize for having violating a basic norm in storytelling, which is to tell a whole damn story—beginning, middle and end.
A few months ago, I’d had this idea I would take you through one day in the life of an MS patient visiting the NIH for a clinical trial. I created a new category on my blog: “TRAP trial.” I wrote a few posts. This series got as far as about 9:45 am, EST, in my day of the life in the TRAP trial. And then a cataclysmic event occurred in my actual life with MS—maybe my drug was dropped?—and I posted about how everything was upended. And didn’t look back. I never wrote the post I’d planned about meeting up with the nurses who have literally held my hand through my MS trials. Or the post about meeting the brilliant woman, young enough to be my daughter, who has developed an app that allows me to perform clinical MS tests myself from the comfort of my own home. I never wrote the post that explains how Dr. Bielekova persuaded me to join the TRAP trial in the first place. And I never introduced you to the indomitable Dr. W. This is some shabby storytelling, indeed.
Let me begin to make amends by introducing you to Dr. W. She has quite the reputation. This is a woman who worked her way to the top on the not terribly level playing field of NIH, where, to this day, only 22 percent of tenured research scientists are women.
When my NIH nurse discovered Dr. W would assume my clinical care, the nurse told me I’d been assigned a neurologist who works only when she wants, and only on projects that interest her. That’s pretty badass.
Meeting Dr. W was like witnessing a 60’s era Katharine Hepburn stride into clinic. There was a hint of horse stable residue clinging to her expensive yet practical shoes. Dr. W springs from a Kentucky pedigree, and bonded with me over her knowledge of Cincinnati. Every subsequent time I’ve seen her, she refers effortlessly to minute details of conversations we’d had months before. Either she is a prodigious note taker, or she doesn’t forget a thing. I suspect the latter.
When I called Dr. W to announce I’d quit Tecfidera, the script didn’t run as it had when I’d rehearsed it on all the other players in my various MS spheres.
Once she got over her surprise that I was on Tecfidera in the first place—she’d been favor of Ocrevus—she insisted I get on “some MS drug” and stay on it. Even Tecfidera would do. It was the only way I could rejoin the TRAP trial.
We weren’t on a FaceTime call, so she couldn’t see my facial expression drop like a hangdog Spenser Tracy after receiving a tongue-lashing from his whip-smart leading lady. While I have already demonstrated I can persuade just about anyone else of the diminishing returns of taking MS drugs after the age of fifty, I didn’t even try to argue with her.
I told Dr. W I would go back on Tecfidera.
I would rather quit quitting Tecfidera than quit the TRAP trial. Barring a new cataclysmic event interrupting my life’s narrative, I promise I will devote the next post to explaining why this Lab Rat thinks it’s worth it to resume Tecfidera and scurry back into the TRAP.