Are Lisa Adams' 165,000 posts too much? Why disclosure isn't overexposure
Cancer is great material to work with. The comedian Tig Notaro discovered this after making the disease part of her routine. (Opening line: “Hello, I have cancer. How are you?”) Dozens of people in my profession–which has always had way too many smokers–wrote themselves into the grave, some quite elegantly. After my own cancer diagnosis, I swore I wasn’t going to turn my disease into magazine fodder.
Then, not long after I returned to work, a cancer story popped up that was related to my treatment, and the managing editor asked me if I was interested. I hesitated. How many pages? I inquired. Four. “I’m in.” As a journalist, you work with what the news gives you–and take all the space you can get.
So I began to write about cancer, especially cancer research, sometimes revealing details of my own illness. I occasionally hear from readers seeking advice on treatment options, about the surgery (horrible) or about the hospitals where I was treated, and I try to help. I took part in a drug study and urged other cancer patients to explore the trials available to them. Being a lab rat, it turns out, gets you a little extra attention from the physicians and scientists–and a little journalistic leverage when you’re covering them too. They may know the biology of the disease (or some of it: cancer is monstrously complicated), but I lived it.
Lisa Bonchek Adams has also been sharing her story in the more than 165,000 tweets and frequent blog posts that the Connecticut mother of three has written since she started down cancer’s path seven years ago. Adams was treated at Memorial Sloan-Kettering Cancer Center in New York City, but her breast cancer has advanced to Stage IV and spread to her bones. All the same, she’s hanging in and blogging hard. “I gather up my pump cords, release myself from the wall’s grip. I walk, counterclockwise around the nurse’s station with a vengeance, trying to push the pain and discomfort away,” she posted recently. I recognize some of that pain, and that walk. If you are walking, you are not dying. I think I set the record for laps around the floor of the hospital where I was treated.
Adams’ tweeting recently got the attention of Bill and Emma Gilbey Keller–he’s the former New York Times executive editor turned columnist; she writes for the U.K.’s Guardian–who each tried to address some touchy issues with what critics thought were lead fingers. Mr. Keller suggested that his father-in-law’s quiet, no-heroic-measures death from cancer might have something to offer health care providers, given the enormous cost of end-of-life care. Every battle can’t be fought to the last soldier, he suggested, and Adams’ daily battle briefs were raising false hopes about experimental drugs. As for Adams, he wondered whether her blog was more about her than a public service to cancer patients. “Social media have become a kind of self-medication,” he wrote, bloodlessly. Ms. Keller, a breast-cancer survivor, explored the idea that Adams was oversharing: “Are her tweets a grim equivalent of deathbed selfies, one step further than funeral selfies?” Go ahead and die already was the takeaway, unfairly or not. The outrage within the cancer and journalism communities was such that the Guardian pulled the plug on Ms. Keller’s story (an action that is also outrageous).
Having experienced Stage IV cancer, I understand Adams’ desire to fight it with every drug that Memorial can throw at her. If they had told me to drink mercury, I would have asked for a double–and in many drug trials that is essentially what’s going on: you get dosed with poison while the clinicians try to guess whether it or the cancer will kill you first. No one operates under the delusion that these are miracle drugs. Cancer treatment is still a three-yards-and-a-cloud-of-dust offense.
I also understand Adams’ desire to share her world with the blogosphere. It’s the literary equivalent of pacing the hallways. Or affirming that you are still here. I worked out like a maniac and continued to play basketball and soccer until the day before my surgery. Every dribble seemed like I was adding a day to my life. It was completely irrational, but you do what you can to stay sane.
Adams’ posts are completely rational, and some are completely compelling. Whether hers is a hopeless case isn’t for the Kellers to decide–or even debate, for that matter. If you are not interested in Lisa Adams’ radiation treatments, or anyone else’s, by all means go back to your cat photos. It’s a big web. But people like Adams are going to become more numerous because cancer has outlasted other diseases; it is on track to kill more than 500,000 Americans this year, even as funding for the National Cancer Institute got cut in last year’s political knife fight. Adams will remind us, until her last breath, it seems, that this is a war we are still losing.
This appears in the January 27, 2014 issue of TIME.