Last night, the Guardian published a hit piece on Lisa Bonchek Adams, a woman who blogs and tweets about living with metastatic breast cancer. This is Lisa.
According to Lisa’s About Me page on her blog, she was originally diagnosed with Stage 2, Grade 3 breast cancer in October 2006. Six years later, Lisa learned that her cancer had metastasized to her bones, meaning she has Stage 4 breast cancer. Even though she underwent a double mastectomy, chemotherapy and the removal of her ovaries and Fallopian tubes. This woman did pretty much everything to reduce her risk of recurrence, and the cancer returned. Besides blogging, Lisa tweets about her health and treatment. As the picture above shows, as of January 2014, she has over 7,800 followers. I am one of those followers. I follow many women in the #bcsm (breast cancer social media) community.
When I heard about Emma G. Keller’s piece regarding Lisa and tweeting, I was livid. When I read this op-ed of Ms. Keller’s, I felt my blood pressure sky rocket. First, the headline and subheading were offensive:
First, comparing a woman’s Twitter account to taking selfies at a funeral is just nonsensical and downright offensive. Lisa isn’t holding up her smartphone and taking cheesy pictures of herself in inappropriate places. She is telling her story and letting her readers know what is happening in her life and health.
Bitch, this is a selfie.
This made me livid:
She has been scrupulous about keeping track of her seven year decline. Her journey began with six month routine postpartum checkup after the birth of her third child. You can read all about the details of her disease and treatment on her blog right up until about this morning, which is when she posted her latest entry, only a few hours after the previous one.
Seven year decline? What the hell is this horseshit? She had early stage breast cancer, went through treatment, and then she was in remission until October 2012. There was no decline. For a journalist, shouldn’t you do something called fact checking? How about interviewing Lisa or those who know her?
This is my favorite part:
As her condition declined, her tweets amped up both in frequency and intensity. I couldn’t stop reading – I even set up a dedicated @adamslisa column in Tweetdeck – but I felt embarrassed at my voyeurism. 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?
I have a guess as to why she is so obsessed, and it’s a fact she doesn’t reveal in her hit piece on Lisa. Ms. Keller was diagnosed with DCIS in 2012.
But no, I was diagnosed with breast cancer on 5 January. Ductal Carcinoma In Situ, or DCIS as it’s known, is the fastest growing form of breast cancer today, thanks to new developments in mammography. But at Stage 0, level 1, it’s also the smallest, earliest form. (This is a cancer that, until recently, was known as “pre-cancer”.)
(I don’t know what she’s talking about when she says level. Maybe she means grade? This also demonstrates how little she apparently knows about breast cancer.)
You know what I find unethical? A woman who describes her bout with cancer as “my 40 day breast cancer” casting any negative light on a woman who will have breast cancer for the rest of her life. I suspect Ms. Keller is projecting her own fears that her DCIS diagnosis created in her. She asks why is she so obsessed? I don’t know, Emma – why don’t you unfollow Lisa and any other Twitter users with metastatic breast cancer if you can’t handle the reality they present?
I get it. I was diagnosed with Stage 1 invasive ductal carcinoma in 2010, and my biggest fear is a distant recurrence. When I feel a weird, unfamiliar back pain, I briefly wonder, “Is this a sign of mets?” That horrible nagging thought rarely leaves my side. Despite this fear and my anxiety about breast cancer, why do I keep following Lisa or Jada or Phyllis or Annie or Jude? Or why did I follow Jen Smith, who recently passed away from metastatic breast cancer?
I don’t think these (mostly) women with metastatic breast cancer should be ignored. Their voices should be the loudest in the breast cancer discourse, not those like Ms. Keller. They are the ones who live in three month increments, living life from scan to scan. They should be blogging, giving interviews and tweeting all they want. Instead of telling them to be quiet, let’s tell them to shout louder. Maybe, then, the ignorant (not rude, the real definition of ignorant) folks will actually listen. We need to be #fearlessfriends, allies to them, not trying to silence or shame them into being quiet. It’s bad enough that the month of October is basically a FU to those living with metastatic breast cancer. They should never be shamed into being quiet.
Ms. Keller, instead of obsessing over someone’s Twitter, maybe you should deal with the fact that there is no cure for breast cancer. Educate yourself. Your cells went rogue on you, and there is no guarantee that these cells won’t attack again. Since Lisa’s Twitter is creating too much anxiety or obsession or whatever this was, here’s a novel idea: hit this button.
It’s really not that hard.
You need to redeem yourself, Ms. Keller. Right now, you’re the writer who published a hit piece about a woman currently hospitalized from the disease I bet still gives you nightmares. Shame on you. Lisa should be concentrating 100 percent on her, not have to waste any energy on someone like you.a