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Sunday, April 23 News

Woman's cancer narrative sparks global controversy

Five months ago, Lisa Bonchek Adams sat in the dining room of her Darien home and talked about music, family and living with cancer.

Last week, she was in a bed at Memorial Sloan-Kettering Cancer Center enduring radiation treatments and receiving palliative care for the excruciating pain from stage 4 metastatic breast cancer.

And that was in the face of a firestorm of controversy from opinions pieces in The New York Times and The Guardian raising the question of how much is too much when it comes to sharing one's life with cancer.

Bill Keller, the former New York Times executive editor, wrote "Heroic Measures" on Jan. 12 about how Adams is choosing to manage her cancer and her "digital presence." His wife, Emma Keller, a reporter and columnist for The Guardian, wrote "Forget funeral selfies. What are the ethics of tweeting a terminal illness?" on Jan. 8, asking how much is too much when it comes to tweeting about someone's personal journey with cancer. More than a dozen news organizations ran articles in the days following countering the Kellers' pieces.

During the interview in September, the 44-year-old Adams explained her reason for blogging and tweeting.

"The most important thing for me, and one of the main reasons I do the blog, is to leave a written legacy for my family and my friends and especially my children."

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The following are the lyrics to "Six Minutes," the song co-written by Lisa Bonchek Adams and Doug Allen, a Darien native and country recording artist. The lyrics have been adapted from Adams' May 15, 2013, post called "No room for that in this (Six minutes)." The song is available on iTunes.
The clock says it's been six minutes now,
I'm glad that they have passed,
Then I realize I've wasted them:
Six minutes gone too fast.

I take a trip inside my head,
I don't know where I go.
Somewhere else,
Anywhere else,
Far from things I know.

I try to forget for a moment now,
Focus on a spot on the wall,
I lose myself in the emptiness,
Such a painfully long way to fall.

So I take a trip inside my head,
I don't know where I go.
Somewhere else,
Anywhere else,
Far from things I know.

I find myself in silence,
Tuning out the noise,
No room for anything,
But him, my girl and the boys.

And when I'm gone,
Just no way around it,
So many things they will miss
'Cause when it comes to being fair,
There's no room for that in this.

Gonna take a trip inside my head,
I don't know where I'm gonna go,
Somewhere else,
Anywhere else,
Far from things I know …

In April 2009, three years after being diagnosed with stage 2 breast cancer, Adams began blogging about "metastatic breast cancer, grief & loss, life, and family." She began tweeting in June 2009, writing about life overall as well as cancer. She is followed by thousands of people from around the globe.

Adams, who has three children, has more than 166,000 tweets and countless posts on lisabadams.com -- all as a way to teach people about living with cancer through her own experiences.

"Some of my children are still young enough that they probably will not remember this time, and won't necessarily understand what's going on," Adams said of her children, Paige, Colin and Tristan. "These are things that adults didn't share with children back then and in large part today, they still don't."

Her more than 14,000 Twitter followers have their own reasons for why they keep up with Adams -- 140 characters at a time -- whether it's because of her #Mondaypleads, in which she encourages everyone every Monday to make the health care appointment they've put off, or for her tweets about books, her family and everything in between.

"@AdamsLisa Your tweets move me every day. You remind me to stay present and aware. So glad I follow you in your journey," tweeted television show director Norman Buckley.

On Dec. 4, 2012, Adams updated her community of followers by saying that her cancer was back after there was no evidence of the disease for five years. She told them she would continue to write toward her goal to "demystify the disease and its treatment as much as possible and I will continue to do that to the end."

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But Emma Keller questioned if it was all too much in her column in The Guardian.

"Should there be boundaries in this kind of experience?" Keller asked. "Is there such thing as TMI (too much information)? Are her tweets a grim equivalent of deathbed selfies, one step further than funeral selfies? Why am I so obsessed?"

Adams doesn't believe she needs boundaries when discussing her cancer.

"I think the topics of death and quality of life and how we die are absolutely important. They should be discussed. I write about them," she wrote in a Jan. 18 tweet.

The Kellers' articles have drawn a new horde of followers for Adams -- about 7,000 last week alone, she estimated.

Adams' supporters took to Twitter to question and counter the Kellers' viewpoints.

"@emmagkeller what are the ethics of criticising a gravely ill person for headline grabbing and self promotion?" tweeted @3tdoan Jan. 9.

The day before, @katierosman tweeted "@emmagkeller @AdamsLisa Emma, I think you've really missed the point about the public service Lisa provides. I'm very confused by this piece."

Bill Keller's op-ed received similar responses, such as the one from @TastyChomps Jan. 14: "@nytkeller everyone has their right to express themselves especially going thru cancer."

One even went so far as to email Adams that she had canceled their digital New York Times subscription and is planning to donate the monthly payment to Memorial Sloan-Kettering instead.

But not every comment directed towards the Kellers has been negative.

"An excellent column. I would add that obituaries that stress a deceased's `courageous battle' also imply that those who have chosen to limit or end the battle lack courage," commented New York Times user grannychi on the article.

"It's a general discussion about death and social media, not a critique of an individual," wrote Guardian user Brittany Schumacher. "So why this article is seen by some as a greatly inappropriate breach of propriety, I don't know."

For Adams, writing and sharing emotions are most important, despite how many people are reading.

"If you write about cancer you're going to lose people because they can't relate to it," Adams has said. "But if you write about fear and you write about anger and you write about sadness and you write about grief and you write about love and you write about hope, people can relate to those emotions, even if it's not about cancer. It's about something in their own lives."

Adams' worldwide audience wants her to continue writing. Emails urge her to continue sharing the personal details for her family, children and friends. "It is those things that we think are so intimate and so particular to our own lives, but when you share them, those emotions that everyone has had," Adams said.

"I know people come here expecting to learn," Adams wrote on April 5, 2013. "That's what I'm trying to do: Educate."

It's rare, she said, for people with metastatic cancer to create a permanent and public journal of their lives "in large part because so many people who are diagnosed are sick."

Of all breast cancer patients, 20 to 30 percent of those diagnosed at an early state will have a metastasis at a later time, like in Adams' situation.

"You sit down at the keyboard and what comes out is different every time and what makes what I write any different than what someone else writes?" Adams said. "We're still putting words together, but it's the way it's done."

For Adams, the first lines of blog posts "pops" into her head and she has to write it down. "I frequently wake up in the middle of the night and almost the whole post is written in my head."

Regardless of the number of blog and Twitter followers, Adams will continue to "teach, share, listen, laugh, grow, love, mourn, cry, communicate, and change the world 140 characters at a time."

"I'm doing as much as I can for as long as I can," Adams tweeted on Jan. 18. "I will die. But that day is not today. That time is not now."

mspicer@bcnnew.com; 203-330-6583; @Meg_DarienNews