It’s the Narrative, Stupid (Cancer)

Participating in The Atlantic’s People v. Cancer got me thinking about mortality, survival, and the cancer narrative that includes them both.

I went to New York last week for The Atlantic Live’s People v. Cancer event. They asked me to address the fairly broad topic of “Finding Meaning in Mortality.” Of course, when they told me that was the topic, part of me wanted to be a spectator rather than a featured guest for the segment so I could know how to find meaning in mortality

The truth is, Nina’s project, both The Bright Hour in particular and her project as a person during the last couple years of her life generally, was precisely finding meaning in mortality. Whether it was coping with the loss of her mom, reeling from her own diagnosis, or dealing with the fact that even our kids get sick as we learned about Freddy’s diabetes the same week as Nina’s breast biopsy came back malignant, the concept of the limitations on every human life was a ubiquitous theme in our lives.

Since Nina died, I’ve continued on the path to discovering meaning in mortality without her, but accompanied by our boys, her dad, her brother, my family, our friends, etc. We have all been groping for meaning (insert groping joke here, sorry Nina! But you had to know that my path to finding meaning in mortality would be littered with innuendo? Insert! Ha. The innuendos make themselves!). So, while I’m not sure I have any good answers for how to find meaning in mortality, I’ve been up close and personal with the subject matter for a while now. Phew. Ethos.

I wasn’t just at at People v. Cancer to blab; I also attended all the other segments I could watch, eager to hear about the state of the cancer related arts (at one point I did duck out so they could tape a wireless mic to my face, which wound up kind of hard on the beard upon removal, but also made me feel a little like Brittany Spears). I was struck by the depth and breadth of the program: there were heads of major Pharma, cancer researchers, directors of major cancer non-profits, patient advocates, caregivers, journalists, medical marijuana experts, data scientists, and, of course, Katie Couric (who I’m guessing didn’t publicly acknowledge our massive and obviously mutual crush publicly only because she’s happily married?).

The segment that stood out to me most was with Judy Perkins. Ms. Perkins is a breast cancer survivor and the first patient with metastatic breast cancer to be successfully treated with immunotherapy. Her story is moving, even to cancer-hardened souls like me. You should watch her talk. It’s great. Beyond that, though, her story is also somewhat implicitly in tension with the part of the program I was doing — Nina’s narrative and Judy’s narrative are at once complementary, concurrent, and slightly antagonistic in the cancer universe.

One of the last questions she answered was, roughly, “to what do you attribute the success of your treatment?” Her answer was thoughtful: she said, first and foremost, luck. But she also talked about the fact that she wasn’t a take things lying down kind of gal and that her competitive spirit and natural tendency to push back (she’s a scientist) against ready explanations helped her navigate beyond the standard of care and find a treatment that worked. If you watch the segment, you will see that her responses are the measured, logical answers of a scientific mind. She doesn’t indulge the rhetoric of “beating” cancer or invoke much battle imagery overmuch, which I appreciated.

But her story is still one of survival, of beating the odds, defeating the disease, conquering a seemingly mortal obstacle and getting back to living a “normal” life. It’s this part of the narrative that I want to push back on, or at least explore. When Nina was sick, the biggest argument we had (maybe the only real one) was when I told her I longed for things to get back to normal. Her response was that attitude invalidated her whole existence. There was no “normal” to return to and wishing it so was simply a form of denial. She wanted to accustom herself to the new normal, to find a way to enjoy life as it was — cancer and all — rather than pining for life as it used to be.

I learned that lesson the hard way, by unfortunately dispiriting my partner in the middle of her wrestling match with true existential dread. But I took it to heart and I’ve tried, in my own halting, myopic way, to take an approach with grief that is similar to what Nina did with mortality. I occasionally find myself literally wishing for Nina’s presence. It would be impossible not to feel this, I think. My entire adult life was built around our relationship, she was my emotional north star and also the love of my life. Missing her is one of the defining characteristics of the past two years of my life, and I suspect the remainder as well.

But I try not to let that instinct rule my thoughts any longer than I can help. It’s not that I want to be in denial, or that I expect not to miss Nina. But I try not to indulge the literal pining for her, the imagning what-ifs of her still being alive, a survivor like Judy Perkins — what if Nina had lived long enough to try immunotherapy, as her oncologist had planned?. It seems to me that is a sort of invalidation of my life as it actually is, another wish for “normal” when that doesn’t exist anymore. I need to stick with a different master narrative, which is the story of loss and surviving grief.

The contrast with Judy Perkins’ story isn’t absolute. Judy’s cancer story is based on the same fundamental contingency as Nina’s: will the proposed treatment control the disease? Will she die in the short term from the disease or will your life take a longer course not truncated by cancer? But the reception for narrative treatment of survival is really different than of terminal cancer.  When Judy Perkins finished her talk, she received a standing ovation from the crowd. I don’t begrudge her that or blame the crowd for it. It was a medical miracle she found a treatment that worked. Her presence on the stage was due only to that intervention. Talk about finding meaning in mortality: every breath Judy Perkins has taken since she was diagnosed is one, as Montaigne would say, stolen from life, lived at life’s expense. It’s heady stuff.

But there is at least a latent, implicit sense in all cancer research, fundraising, and even in the People v. Cancer program title itself, that cancer survivors are “victors” and cancer deaths are “casualties.” Nina’s mom gave a keynote speech not long before she died to a group of Team in Training fundraisers on the eve of a triathlon in Washington D.C. The TnT folks are gung-ho about the work they do raising money for cancer research. They’re competitive. I mean, they compete in triathlons, right? So, insane / competitive?

But Jan’s wasn’t a pregame pep talk. It wasn’t rousing or designed to energize the crowd. Instead Jan exhorted all of them not to forget that celebrating “beating cancer” or “winning” against cancer carries an implicit sense that those who do not prevail are the losers in the fight against cancer. She gave the example of a bell that rang at her cancer center each time someone finished treatment. Everyone would look up and give a round of applause each time it rang. But in the treatment center every time that bell rang were patients like Jan, who knew the moment they were diagnosed that the bell would never ring for them — their cancers had no cure, no lasting treatment, only the hope of experimental drugs to prolong life in increments of months, maybe years.

I LOVED the People v. Cancer event. I was thrilled to be there. I would do it again in a heartbeat. In particular I loved that the organizers of the event saw clearly that both Judy Perkins’ narrative and Nina’s narrative were important components of a discussion of the status of cancer treatment and care. By putting Judy and Nina (through her humble, if nattily stockinged proxy) on the agenda, they guaranteed that both components of this concurrent, complementary, antagonistic narrative around cancer — survival and mortality — were represented.

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I mean, those are fantastic socks, regardless of what you thought of my interview. You can sorta tell Ross was staring at them the whole time. #SavageSocks

But it got me wondering if the narrative is not sufficiently developed. Both of these themes deserve to be developed as part of the cancer narrative, but both of them are somewhat impoverished without the involvement of the other.

When I was preparing for the event, I had whiffs of this same tension and it sent me looking for writing about narrative medicine, and the literature that field has produced. This seems like the natural home for talking about the concurrent, complementary, antagonistic narrative themes of cancer survival and mortality. There are now hordes of writings that fall broadly into this category. Paul Kalanithi’s When Breath Becomes Air and Atul Gawande’s Being Mortal were two of Nina’s original beacons. They drew her into the conversation about mortality, certainly. And both Nina and Paul’s books focus heavily on the theme that “finding meaning in mortality” is, essentially, the same as “finding meaning in life,” with a finer point on it. Their shortened lifespans and the certainty of their prognoses led them as writers to a clearer place on mortality than they might have found without their diagnoses.

But the interpolation of death into life to me is also the point of contact with the conversation about survival. Taking Jan’s exhortation, that conversation needs more contact with the part of the narrative that follows life inexorably to death, rather than being satisfied with a celebratory focus on the “success” of survival. I am glad I had all fifteen minutes of my segment to myself — it’s hard enough for me to be concise solo. But part of me also wishes that Judy Perkins and Nina’s narratives could have a dialogue. A true point of contact between survival and mortality wold have at least created an opportunity to stitch together the competing, concurrent, complementary narratives. Honestly I’m not even sure what that discussion would look like, and I’d have been even more nervous preparing for the event than I already was. But if I had one thing I’d like to participate in next, that’d be it: how to make these competing narratives more whole (and I would guess it’s something a lot of people are doing, I just don’t have my arms around it yet).

As it was, the event was amazing. I am grateful to Ross Andersen, the science editor at The Atlantic who interviewed me and whose thoughtful questions made me think afresh about my experiences, Nina’s book, and what it means to find meaning in mortality. I am grateful to The Atlantic Live folks for inviting me and for putting on this event, which was great to attend and which obviously got me thinking. One of the best parts for me about doing events for The Bright Hour is the way it pushes me to never stand pat with processing grief or loss. I am helped in my quest not to retreat to some purported “normal” by being continually pushed to reexamine what happened to Nina and my life through the lens of various smart, prepared interlocutors (like Katie Couric! She’s so wonderful. Seriously. The best.).

I’m grateful in particular to Judy Perkins, who told her amazing story in a way that both challenged and expanded my understanding of what it means to deal with a terminal cancer diagnosis, pushing me to live in a state of complementary, concurrent, competing understanding that may never be resolved, but recursively pushes all of us in the direction of a more complete apprehension of what it means to be alive and to die.

 

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