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 drug trials at
Memorial Sloan Kettering Hospital in New York City, but her breast
cancer has advanced to stage IV and spread to other organs. She’s in
desperate shape, hanging in and tweeting 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 tweeted 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 400,000 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.
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