On Cancer PTSD and the Double-Kellering of Lisa Adams

IN NOVEMBER 2010, I finished a year of treatment for advanced breast cancer. Just 24 hours after my last Herceptin infusion, I took my bald, beleaguered self on a plane to Austin to join other women at the Life Beyond Cancer retreat. My hope was to get some insight into how to regain some semblance of my self after the scorched earth campaign that is cancer treatment.

Like a kid off to summer camp, I was not sure how I would find my way in this group of strangers. The first friend I made on the shuttle to the conference center –– I’ll call her Mariel –– shared my love of running and the Mexican rock band Maná. We were both Scrabble geeks and had children of similar ages. I identified with her in many ways, and then she matter-of-factly told me she was in the midst of a recurrence.

For a second, I froze. Closed in the small space of the airport van, I had no way of following my instinct to escape. You may think it sounds dramatic, this adrenaline-fueled instinct to flee dear Mariel. But it isn’t. It’s just one of the many existential pitfalls of having had breast cancer. You have already dipped your toes into the waters of mortality and felt their temperature and texture. You’ve pondered your demise, heard its name and seen its shape. A survival instinct kicks in – one, I might add, that you later have to suppress as you acquiesce your healthy-feeling body into one that gets injected with chemicals, scarred by surgeries, and burned by radiation. When you see somebody else traveling the path-that-almost-was, it can be almost too much to bear.

Once I got over my initial shock about Mariel’s condition, I simply asked her questions. I moved past my fear and discomfort, and enjoyed Mariel’s humor, warmth, and conversation. She explained how life goes for the Stage 4 crew. They try to balance holding back new tumors with managing side effects. When one approach stops working, they try to find another. So far, she had managed to keep herself fairly well, keeping up with her role as a mother and working part time.

Over the course of the next few days, she was not the only stage 4 patient I met. Slowly but surely, I stopped feeling the gut wrenching instinct to flee when another woman told me she had metastatic disease. I could listen and ask questions. I could see that there was a range of experiences, disease courses, available treatments, and quality of life for these women.

Maybe, just maybe, this possible fate did not have to be a nightmare.

Another existential pitfall of having had breast cancer comes when you educate yourself about the likelihood of recurrence. Between 20 and 30% of women who are treated for localized breast cancer develop metastatic disease. This is not what the Pink Promise™ campaigns’ sloganeering insinuate, so this information also often comes with a shock. Disturbingly, stage at diagnosis is not a good predictor for who does and does not face recurrence. We have a lot to learn about tumor pathology, genetics, and targeted treatments before we have models of who is likely to experience metastases.

What is one to do with all this existential angst?

Speaking for myself, I went to therapy – my therapist herself had stage 4 thyroid cancer – and talked about my fears. I befriended women with late-stage disease, mostly online through my blog and on twitter. I learned from them. I try, every day, to make my peace with the uncertainty of it all, to love the life I have and embrace my friends and family, to not let the undertow of dread and fear pull me under. Social media played a big role in finding my way through treatment and recovery. In fact, I went to the retreat based on the recommendation of an online friend. Facebook, twitter, and blogging have helped many cancer patients break their isolation, educate themselves, and garner support.

Screenshot AdamsLisaCROPRecently, journalist Emma Keller took the Guardian blog, posing what was supposed to be an ethical question for the 21st century. Building off of the example of blogger Lisa Adams, who is experiencing a metastatic recurrence of breast cancer, Keller asked what might constitute too much tweeting by a cancer patient. In the piece, which the Guardian has since removed over ethical concerns (cached copy here), Keller wrote:

“As her condition declined, her tweets amped up both in frequency and intensity. I couldn’t stop reading – I even set up a dedicated @adamslisa column in Tweetdeck – but I felt embarrassed at my voyeurism.” [author note: This is a mischaracterization: Lisa’s pain increased, we know nothing of her overall condition].

Nowhere in the article does Keller talk about her own 40 day brush with cancer, even though she wrote about it publicly, also in the Guardian. This, to me, was the screaming subtext for the combined fascination and horror she expressed about Lisa’s writing. In the earlier piece, she ended by talking about a post-treatment scare, saying:

“My goal all along has been to put this experience behind me as fast as possible before carrying on with life as normal. The cost is insane, the trauma has been considerable.”

Yes, I am sure it has. Why does she not connect that insight to her own self-described obsession with Lisa’s experiences? That’s not voyeurism: that’s having some PTSD to work through.

But Keller’s trauma is not Adams’ fault, just as my trauma was no fault of Mariel or any other woman with metastatic disease. Just because somebody is living what you fear does not give you just cause to push them away  –– or worse, publicly shame them in an international paper.

In his follow up piece in the New York Times that also (bizarrely, not coincidentally –– but I will leave that to other post-mortems on Kellergate) used Adams’ story as a launching point for an ethical question of our age (“How much treatment is too much?”), Keller’s husband, Bill, valorized the quiet style of illness. Recall that Emma herself tried out “put[ting] the experience behind me as fast as possible,” and in his piece Bill applauds his dying father-in-law for his noble style of “going gently.” Clearly, the Kellers are very pro-low key emotions, perhaps to the point of emotional denial.

Ironically, trauma generally does not heal by shutting down feelings or running away. An unintended consequence of denial, in fact, is the projection of trauma onto other people. Instead of reading Lisa’s tweets and feeling the anguish of having cells in her own body that may have (and may still yet) send her down that path, Emma Keller publicly shamed Lisa for making her feel bad.

Why make a mountain out of a social media molehill? What place do I have psychoanalyzing a journalist for her writing?

The resonances are felt across the cancer community, especially for people with late-stage diagnoses. I will never forget the stories I have heard from women with metastatic disease about being asked to leave support groups because they were “scaring the other women.”  This shunning is painful, even if it comes from the very human, fight-or-flight place of survival I describe experiencing when I met Mariel. It shines a light on the rift in the breast cancer community and the alienation of women with stage 4 disease –– which is why the social media presence Lisa Adams and other women with “mets” becomes all the more important.

If I had not been in an airport van when I met Mariel and managed instead to slip away, perhaps I would have. But I would have missed an opportunity to confront my own fears and to meet a wonderful person.

Read more about the Kellers’s inaccurate and vitriolic commentary, what it means to live with metastatic breast cancer, and societal attitudes about life, death, and personal disclosure.

Ilana (“Lani”) Horn, Associate Professor, Vanderbilt University

Ilana (“Lani”) Horn is Associate Professor of mathematics Education at Vanderbilt University’s Peabody College. Her scholarship focuses on everyday learning and developing theoretical frameworks that account for social and emotional as well as psychological dimensions of human cognition. When she became a breast cancer patient in 2009, two years after losing her stepbrother to cancer, she became interested in documenting and analyzing the social and emotional aspects of cancer, treatment, and survivorship. She wrote about issues such as caregiving, end of life, doctor-patient communications, the cultural expectations of patients, and young adults and parents with cancer on her blog, chemobabe.com. She hopes to merge her scholarship and advocacy through studies of cancer patients’ learning in the future.

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