Reports from the Medical Maze

This week finds us wading through the medical maze again. I drove my friend Kev to Dana Farber Cancer Institute for his bi-weekly slate of appointments. Kev’s been living with terminal colon cancer for six and a half years, which is a whole heckuva lot longer than anybody thought he would, back when he was diagnosed. But he has persisted, and on the drive out, we talked about that. How to persist.

We talked about therapists and social workers, and the gift of learning how to stay in the present moment, and plan for the future but keep it at bay. You can write your directives about hospice care, then turn away and go back to your life, knowing that you’ve done what you need to do, and when the time comes, the plan will be there. But for now, you’re waking up, taking your meds, and taking a walk on the bike path in the dappled sunshine. And it’s good to have your head in that, and in maybe getting a bagel. Kev made a short film about learning to view his cancer as a really obnoxious roommate. It’s dizzying to me, thinking about the journey it takes to get to that perspective.

Kev is on about his sixth experimental treatment. Ever since they ran out of approved chemotherapies to slow the progress of his cancer, he’s been raising his hand and saying yes to clinical trials. He’s done a couple “first in humans” ones, and put up with a range of gruesome and humiliating side effects which made for humorous anecdotes, shared in our backyard while we watched the kids play on the swings. Though he’s not the type to say it aloud, I think doing the trials is a way for him to find meaning in this suffering. Perhaps he can help the next person.

We talked about how when the diagnosis first comes in, there’s this huge wave of scenarios that wash over and through you; a tidal wave of panic and preparation. Kev recalled the day he went in to the hospital for his symptoms, calling a friend to say he wouldn’t be able to be the videographer at her conference the next day . . . “because I was in the hospital and they weren’t letting me out.” Amidst the thoughts of health care proxies and second-opinion surgeons and hemoglobin levels, the thing he could manage was to call Nicki and let her know about the video thing.

I remember packing Sophia’s lunch for preschool, not long after J was diagnosed, trying to keep my attention focused on peeling carrots and making a nice sandwich—all the while imagining having to make decisions about an unconscious husband in an imagined hospital bed. How far away is that hospital bed? How does one live, not knowing its proximity?

IMG_4997The truth is, Kev and I could’ve been run down by an unfriendly Mitsubishi box truck on the streets of Boston yesterday (and nearly were). The truth is, we don’t really get to know when or how death is coming for us, only that it will come. And sometimes, if you’re Kev, you know quite a bit about what it might look like when it does, since you have to reckon with it on a daily basis.

Kev lives with this knowledge, and whenever I spend time with him, he reminds me how to un-grit my teeth, let go of the illusion of control, and try to stay present. Be here now, kid, talking to your friend Kev, who you’ve known for 20 years, who knows you as well as pretty much anybody. Listen as he says again, “it is what it is. You can’t control it.”

We can’t completely control the progress of disease in our bodies or the trajectories of distracted drivers. But we can choose our perspective. Panic or acceptance. Fear or presence. Usually, traveling the road between them. Hopefully, with a friend.

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