When journalists kick the cancer patient

If a woman with Stage IV breast cancer wants to blog and tweet about her illness and experience, who is anybody else to criticize her?

Lisa Adams is at the center of a journalistic brouhaha today after writer Emma Keller penned a piece for The Guardian criticizing Adams for her openness:

It’s clear that tweeting as compulsively as Lisa Adams does is an attempt to exercise some kind of control over her experience. She doesn’t deny that. She sees herself as an educator, giving voice to what so many people go through. And she is trying to create her own boundaries, flimsy as they might be.

She’ll tell you all about her pain, for example, but precious little about her children or husband and what they are going through. She describes a fantastic set up at Sloan-Kettering, where she can order what she wants to eat at any time of day or night and get as much pain medication as she needs from a dedicated and compassionate “team”, but there is no mention of the cost.

She was enraged a few days ago when a couple of people turned up to visit her unannounced. She’s living out loud online, but she wants her privacy in real life.

In some ways she has invited us all in. She could argue that she is presenting a specific picture – the one she wants us to remember. “I do feel there will be lasting memories about me. That matters,” she wrote to me in a direct message on Twitter.

Ms. Keller’s husband, Bill Keller of the New York Times, turned up the heat with a column today that only thinly masked his displeasure with Adams’ blogging and tweeting:

Beyond that, whether her campaign has been a public service is a more complicated question.

“I am public about this disease in order to shed light on the daily lives of women living with this diagnosis rather than hiding behind the pink party line that is the only one that gets the spotlight,” she told me in an email. (The ubiquitous pink-ribbon breast cancer campaigners have been faulted for overselling the wonders of early detection and giving short shrift to research.)

Her digital presence is no doubt a comfort to many of her followers. On the other hand, as cancer experts I consulted pointed out, Adams is the standard-bearer for an approach to cancer that honors the warrior, that may raise false hopes, and that, implicitly, seems to peg patients like my father-in-law as failures.

“It is the journalists—hungry for new insights, thirsty for new trends—who are saddling her with the freight of moral implication and then judging her for the audacity they infer. It is a remarkable trick. It is also a cruel one,” The Atlantic’s Megan Garber writes today.

It is also a wrong one. The Kellers missed every point Lisa Adams has been trying to make, Medium.com‘s Zeynep Tufekci says:

1- Unlike the pink-drenched narrative, breast cancer is not always survived, even if caught early and the patient does everything right.

2- Palliative care is not for the last few weeks of life to be availed of only as last resort, and can be crucial to better quality-of-life throughout all stages of major diseases, especially a painful one like cancer.

3- Clinical trials are not just last-ditch efforts. Lisa Adams was receiving “standard of care”—what she would have gotten if she were not in a clinical trial, during the trial.

4- Many people “live” with metastatic breast cancer fully knowing that it will eventually kill them in months or years, but there is still much that can be done to prolong life and improve its quality.

This afternoon, The Guardian removed the article (though it’s available here) after a flood of criticism about picking on a cancer patient.

  • MrE85

    I’m sure the Kellers had a little voice in the back of their mind, asking “Do I really want to say this?” They should have listened to it. If they don’t have that voice, they should wonder why.

  • jon

    “She’s living out loud online, but she wants her privacy in real life.”

    Welcome to the internet… I’m glad that you understand the rules now.

    This post does not qualify as permission to show up at my house uninvited and unannounced.