What do I say?

What do I say…

…when I come face to face with the person the world failed…when I’m the person for whom everything went right?

I’m one of two OM patients in my town. The other patient and I had the same testing, the same doctor, even the same clinical trial. But for her, all those things went horribly, horribly wrong. A bad biopsy of her (mosaic) tumor gave her and her doctor false results. The biopsy results led to what turned out to be a disastrous treatment course. Then, when the real state of things was finally revealed and she was treated properly and referred to the trial, she was randomized to the arm that has since been suspended as a colossal waste of time and effort. She is now metastatic, with unresectable tumors in multiple places.

While I’ve been bitching about possibly having to learn how to self-inject MS medication daily, the other patient…

…has been giving her stuff away.


If that weren’t bad enough, I’m personally part of the world that failed her. She had reached out to me a year and a half ago through the trial, wanting to get together and commiserate and compare notes. I said yes. I promised to get in touch after I got home from the trial trip she’d caught me in the middle of. And then…

I didn’t.

Life happened. Bedbugs. Lice. Toxicity, and lymphadenopathy. An FNA. Possible lymphoma, possible thyroid cancer. The paresthesias got busy again, and an LP happened, and suddenly MS entered the picture. Through it all, I kept thinking, “I’ve got to call her!”

And somehow, I never did. I got scared that I would try, and reach only a grieving husband. I kept hoping that my hearing nothing from the trial crew meant the other patient was as okay as I am.

Instead, by complete accident, I came face to face with her at LabCorp. And the news is just as terrible as I’d feared. She’s getting bloodwork as part of preparing for possible surgery in a few days…a surgery that, at best, might buy her a few years. Without a Hail Mary, she won’t see another Christmas.

What do I say?

I’d never really had a motto in life, except for something nebulous like, “Be kind.” But for the last two years, the motto that’s been ground into me, day after day, has been this: “Be grateful. It could be worse.”

I walked into that LabCorp today having already spent a long time crying. I was overwhelmed by the reading I’ve been doing about my MS diagnosis, and the medication costs, and the prospect of daily self-injection. I walked into that LabCorp feeling sorry for myself, and wronged by life.

I walked out with my face still stinging from the cosmic bitch slap I’d received. Life spoke to me and said, “Not only have you been very lucky, little girl, you’ve been doing a piss-poor job of paying that luck forward to others who needed it more.”

The other patient was both kind and gracious as we exchanged numbers. She was glad to have met me. I’d rather she’d have gotten angry at my unintentional ghosting. Then maybe I could have burned off some of this shame that’s trying to smother me.

What do I say?



  1. I have thoughts like this again and again. I haven’t met too many melanoma patients in person (because I’ve tried very hard to avoid putting myself in that position) but did lose a couple of people I had gotten close to online. Both of whom were on the treatment I continue to be on, but it didn’t work for them, for reasons that I hope will one day be apparent, before more people die.

    What to say? There is nothing to say. All is randomness. (That isn’t the sort of thing you should remember when you can’t sleep at 4 a.m., of course.)

    1. Have you seen Patton Oswalt’s Netflix special, “Annihilation”? In it, he talks about the ongoing existential battle he and his wife used to have. He used to insist that everything happened for a reason. And she used to insist, “It’s chaos out there. Be kind.” Then she died in such a random, heartbreaking way. Now her motto has become his. “It’s chaos out there. Be kind.” It’s the “be kind” part that gets me through the 4am terrors. The first person I have to be kind to is me. Especially at 4am.

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