In the fall of last year, I noticed a lump in my left neck which felt to me like a run-of-the-mill swollen lymph node. When it didn't go away I sought the advice of a doctor. Several months and countless medical tests later, the official diagnosis is stage IV non-Hodgkin's lymphoma.
It's not quite what it sounds like; for some reason the way the stage numbering system works for lymphoma is different from all other cancers. This week, I'll receive my first session of chemotherapy. This will continue every two weeks for three months, at which point there is a chance I'll be in remission. If not, we start the whole thing over again.
When I was diagnosed, writing about the experience seemed like an obvious way to work out the spectrum of emotions I was feeling. Growing up, I was constantly writing. As an adult, it's how I make a living. And so the week following my diagnosis, I began documenting my journey on a blog.
In separate columns, both published in the past week, husband and wife Emma and Bill Keller argue in no uncertain terms that they take offense to what I'm doing. That they don't think I'm handling my cancer with proper decorum, which would be to sit down, shut up and stop serving as a reminder to the Kellers that life is frequently ugly and unfair.
I was not, of course, the subject of their columns. The Kellers were writing about Lisa Adams, who has been documenting each step of her battle with metastasized breast cancer for the past seven years on Twitter. In her article, published last Wednesday, Emma Keller wrote, "Should there be boundaries in this kind of experience? Is there such a thing as TMI? Are her tweets a grim equivalent of deathbed selfies, one step further than funeral selfies? Why am I so obsessed?" From there, Keller weaves a bizarre argument that 1) Lisa's constant tweeting leaves behind macabre memories, and 2) it is creepy to read about someone's health struggles. Her opinion upset many, including Adams, and has since been removed from The Guardian's website with a note that it is "pending investigation."
Coming to his wife's defense four days later in the pages of the New York Times, Bill Keller infuriatingly accused Adams of disrespecting the choice made by other cancer patients, including his father-in-law, to seek palliative care, rather than experimental treatments.
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.
Keller then spends the remainder of his column backing up his claim that no one should pass judgement on what is the "better" way to handle cancer. This argument is backed up by a parade of medical professionals who were certainly not informed that their quotes would be used for a vindictive takedown of an innocent cancer patient. That Keller has the audacity to make this argument in the middle of a column dedicated to telling one cancer patient that she's going about this the wrong way proves that, at best, Bill Keller does not read his columns before they are published. At worst, it is a warning sign of sociopathy.
In a blog post posted yesterday afternoon, Margaret Sullivan, the Times' ombudsman, admits that in Keller's piece "there are issues ... of tone and sensitivity." She continues: "Mr. Keller didn't make a full effort to understand the point of view of the person he's writing about on the very big and public stage that is The Times." But even the piece's headline—"Readers Lash Out About Bill Keller’s Column on a Woman With Cancer"—suggests that the mere act of critiquing Keller is one of irrational rage.
Keller's own argument is that "[b]y living her disease in such a public way, by turning her hospital room into a classroom, [Adams] invites us to think about and debate some big, contentious issues." Conversely, writing that he thinks talking openly about cancer is icky in the nation's paper of record invites us to think about and debate whether or not Bill Keller is an ass.
The Kellers aren't the only people who've expressed discomfort with writing about cancer diagnosis and treatment. Several people I told about the blog asked if I was sure I wanted to be so "public" about my battle with cancer, whatever that means. Lymphoma is not, for the record, caused by intravenous drug use nor is it caused by bigotry, nor racism, nor any other thing that a rational human being would be embarrassed to admit to having done.
I don't know Lisa Adams, nor have I ever spoken with her, but we are both receiving treatment at Memorial Sloan-Kettering Cancer Center. (Though we are both stage IV, my cancer is far less serious.) I would never presume to speak on her behalf. But for me, writing publicly about my cancer serves a therapeutic purpose. Writing about my anger and my fear, chronicling the endless tests and releasing it into the world serves to release a heavy burden I carry. Having cancer is lonely and while I'm fortunate enough to have wonderfully supportive family and friends, no one can know exactly what I'm feeling: the pain of an immune system which has turned against me, the near-constant nausea caused by a second tumor in my intestines, the horror as I watch my 24-year-old body turn frail, unable to climb a set of stairs without having to stop to catch my breath. Vocalizing these things won't cure me, but does serve to calm me. To organize my thoughts and feelings into words, sentences and paragraphs is to turn them into something manageable, rather than an intangible cloud in my own head. If the words that I write can also help prepare someone else in a similar position for the unexpected dramas of a cancer diagnosis, all the better.
Dually, and perhaps more practically, blogging serves to update friends and family who are scattered across the country about my progress.
I can understand how having a large platform to broadcast your one's own opinions could inflate one's ego. However, being a columnist for the New York Times does not make you the nation's authority on etiquette, Bill Keller. And it certainly doesn't give you the right to tell me how to live my life or handle my cancer.
Robert Kessler is a staff writer at Celebuzz.com. He is blogging about his ongoing treatment at Cancer? I Hardly Know Her. His writing has previously appeared on The Wire and Gawker. While writing this piece, he underwent an EKG, an echocardiogram and a bone marrow biopsy which is a barbaric procedure in which the patient is wide awake while a doctor drills into his pelvis and collects bone marrow. Sorry if that's TMI, Emma.