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Finding Beauty: How Lisa Bonchek Adams Told Her Cancer Story

This article is more than 9 years old.

Lisa Bonchek Adams, who chronicled her life with terminal disease before a loyal audience of Internet readers, died at home last week at age 45 from metastatic breast cancer. She is survived by her mother, father, husband, three children, other family and friends in her community.

Lisa was pulled onto the national stage in January 2014 when Emma Keller, then a contributor to the Guardian, and Keller's husband Bill, then an op-ed writer at the New York Times, wrote a pair of bruising columns about her. Emma criticized Adams for oversharing, and Bill suggested she give up non-palliative treatments. Their harsh treatments created an uproar, and also highlighted sensitive issues relevant to detailing health information on the Internet, medical journalism and goals of cancer care.

For many, Lisa offered a window into what it was like to be dying of cancer but still reaching for new experimental therapy, for continued treatment, for hope grounded in reality. She was clearly and understandably trying to hold on to her life. Meanwhile she was receiving palliative care aimed at relieving symptoms and she wrote about that, too. She looked at her condition head-on; she planned for this end.

I didn't know Lisa well, but I sat with for her for hours one cold, wintery day in December 2013 at Java Girl, an old-style coffee shop on East 66th Street. She picked the spot, just paces from the medical center. The place was dreary and sunless but, by neighborhood standards, hip for its old wooden furnishings and throw pillows. Lisa was participating in a clinical trial, taking an experimental PI3 kinase inhibitor about which she wrote on her blog. She’d been up since around 6 AM to take the train to Manhattan, to get to the medical center where she would have her blood drawn before a 10AM check-up.

When Lisa entered the café, I recognized her instantly. Some people don’t match their Twitter photos, but hers was true. She stood tall and smiled broadly. We exchanged greetings and hugged. Close, but not too close. We were each a bit wary, perhaps – as is normal – when you meet a person you “know” on-line. She took off her bulky winter coat and sat down.

Lisa grinned and mentioned that she couldn’t have coffee or food yet. She was precise. The protocol required she not ingest anything for a certain amount of time after taking her medication. At 11:15 she looked at her watch, walked to the counter, ordered a small sandwich and asked for a cup of water. She gulped the liquid, evidently thirsty, and returned to our table.

We talked about our lives and families, breast cancer and politics related to that, mutual friends, writing and education.

Her stamina impressed me. A few weeks prior, Lisa participated in a seminar with oncology fellows at Memorial Sloan Kettering Cancer Center. In her words, the aim of the session was for doctors in training to learn from her, a patient, what it’s like to be living with metastatic cancer. She expressed concern that some physicians become frustrated when they can’t find a remedy. “A lot of doctors, they go into medicine because they want to help you, to fix it,” she told me. “But this, what I have, can’t be fixed, and that can be hard to deal with.”

That was what Lisa revealed in her tweets and postings: what it was like to face the un-fixable. Not all doctors choose to see patients each day who have incurable conditions. Not everyone reading on the Internet wants to follow a stream of updates from someone who is struggling, working to stay alive. Some considered it TMI. There are people who turn away from the illness of others.

But there are also those who turned toward Lisa, trying to learn from a life lived with incurable cancer always looming. “Find a bit of beauty in the world today," she wrote. “Share it. If you can’t find it, create it. Some days this may be hard to do. Persevere."

I am glad that Lisa tweeted and blogged as she chose. She was no shrinking violet, to say the least. She persevered. I appreciate that she shared her experience and perspective. Still I have difficulty looking past the underlying problem, the thing that killed her, metastatic breast cancer. But anger is not pretty.

And I wonder if every person affected by metastatic breast cancer would tweet and tweet and tweet about it, and tell stories like Lisa’s, people would pay attention and try to help. Or would those who are feeling well, blissfully doing well, try to shut them down, pleading that we or they – who might be any of us, sooner or later – just go away, vanishingly.

Lisa wasn’t quiet about life or living with a devastating condition for which there should be better treatments by now. That is why Lisa’s writing mattered, at least for me. She spoke out, and held firm. That is why she remains so beautiful.

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