Correction appended Jan. 14, 2014.
Cancer is really great material to work with. The comedienne Tig Notaro discovered this after making cancer part of her routine. (Opening line, “Hello, I have cancer. How are you?”) Dozens of people in my profession—which 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 write myself into the grave if the chemo and the surgery didn’t stop the disease. Nor was I going turn my disease into magazine fodder.
Then, not long after I returned to work, a cancer story popped up that was directly 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 have to 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, occasionally revealing details of my own illness. I thought it would serve the reader. I took part in a drug study and urged other cancer patients to at least explore the trials available to them. Being a lab rat, it turns out, you get a little extra attention, too. And having been a customer gives you a certain amount of journalistic leverage with the scientists and physicians you are covering. They may know the biology of the disease (or some of it, cancer is monstrously complicated); but I lived it. I occasionally hear from readers seeking advice on treatment options, or about the surgery (horrible), about the hospitals where I was treated. I try to help them as best I can.
Lisa Bonchek Adams has also been sharing her case information, in more than 160,000 tweets that this Connecticut mother of three has posted since she started down cancer’s path seven years ago. Adams has taken part in a drug trial at Memorial Sloan Kettering Hospital in New York City, in an effort to treat her breast cancer that had advanced to stage IV and spread to other organs. She’s in desperate shape, hanging in and blogging hard. “I gather up my pump cords, release myself from the wall’s grip. I walk, counter-clockwise around the nurse’s station with a vengeance, trying to push the pain and discomfort away,” she posted recently. I recognize 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.
Her relentless tweeting recently got the attention of Emma and Bill Keller—he’s the former New York Times editor turned columnist; she writes for the UK’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 taken death from cancer might have something to offer to U.S. healthcare providers, given the enormous cost of end-of-life care. Every battle can’t be fought to the last soldier, Mr. Keller suggested, and Adams’ daily battle briefs were raising false hopes about the benefits of experimental drugs. As for Adams herself, 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. Mrs. Keller 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 just 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 Mrs. Keller’s story .
Having once 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 keep in mind that in many drug trials that is essentially what’s going on: You get dosed with poison while the clinicians try to guess whether the poison will kill you or the cancer first. But patients are fully informed. No one—especially not doctors—administers under the delusion that these are miracle drugs. Cancer treatment is still a three yards and a cloud of dust offense. The gains are small but they keep coming, which is why the trials need to be ongoing. And compared with the trials of decades past (read Siddhartha Mukherjee’s The Emperor of All Maladies for the horrifying accounts) the drug protocols are at least humane.
I also understand Adams’ desire, if not her need, to share her world with the blogosphere. It’s the literary equivalent of pacing the hallways. Or affirming that you are still here. My approach took a different format. 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 all 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 at this point 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 if that’s what you like. It’s a big web. But people like Adams are going to become more numerous because cancer has outlasted other diseases to become our top killer. Cancer will kill more than 500,000 people this year, even as the funding for the National Cancer Institutes 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.
Correction: The original version of this story misstated the number and timing of drug trials Adams joined. It also misstated where her postings appeared and the number of Americans expected to die of cancer this year.