Saying Goodbye to Lisa Bonchek Adams

March 15, 2015
Lisa's blog will remain at http://lisabadams.com/

Lisa’s blog will remain at http://lisabadams.com/

Lisa Bonchek Adams  died on March 6, 2015 at age 45 from metastatic breast cancer. Our condolences to Lisa’s family and friends.

Many people first learned of Lisa after she was the subject of stories from Guardian columnist Emma Keller and her husband, former New York Times executive editor Bill Keller in January 2014. The Guardian subsequently removed Emma Keller’s article; MBCN wrote a rebuttal to   Bill Keller’s article shortly after it appeared.

“Bill Keller’s op-ed piece on “Heroic Measures”  (January 12, 2014)  contains egregious factual errors,” we wrote in January 2014.  “It also misrepresents what metastatic breast cancer is and how it is treated.”

We hope that Lisa’s writing will be her legacy. Emma and Bill Keller both questioned Lisa’s motives. Why would would someone share so many intimate details of a devastating illness? Only Lisa could adequately address that issue–but in very general terms, writing about metastatic breast cancer probably provided a small measure of control over a disease where one’s future is mired in uncertainty. As the New York Times put it, people with metastatic breast cancer “live from scan to scan, in three-month gulps, grappling with pain, fatigue, depression, crippling medical costs and debilitating side effects of treatment, hoping the current therapy will keep the disease at bay until the next breakthrough drug comes along.”

We are reminded of Antaeus–the mythological figure whose strength remained intact as along as his feet were still touching the ground.  As long as Lisa could tweet, she remained grounded–strongly connected to her real-life family as well her online tribe.

One reason that Emma Keller was presumably drawn to Lisa’s online output was their shared history. Both Emma and Lisa were diagnosed with early stage breast cancer. Both had mastectomies followed by reconstruction. Both women were originally thought to have DCIS; Adams subsequently learned she had more extensive involvement.

Lisa was diagnosed with Stage 2 breast cancer in 2007 at 37 when her youngest child was 7 months old. In 2012, she learned the cancer had returned and was now metastatic, having spread to her bones.

From the Guardian article, it seemed Emma Keller might have wondered if Lisa’s experience would inform her own at some time in the future. We hope not–but of course we don’t know. We stress that every individual is a statistic of one. We can’t assume anyone’s cancer experience will the blueprint for our own.  Everyone is unique.

Most people with early stage breast cancer will NOT go on to have a metastatic recurrence. Unfortunately, about 30 percent will. Some people erroneously assume people with metastatic breast cancer must have done something wrong–and that’s why their cancer came back. But that is simply not true.

There are currently an estimated 155,000 people living with Stage IV breast cancer in the U.S. Most–about 90 percent–were previously treated for early stage breast cancer. Only about 10 percent were metastatic from their first diagnosis. Why did these patients’ early stage breast cancer cancer come back? How can we prevent this from happening? Those are answers we don’t have today.

Most breast cancer isn’t hereditary–it just happens. Lisa did have a family history of breast cancer–her own mother was diagnosed at age 36 and survives her. The median age for breast cancer in the U.S. is 61–a diagnosis before age 40 is thought to be more indicative of a hereditary cancer–but again, those are answers we don’t have today. Lisa shared that testing showed she (Lisa) wasn’t a carrier of the BRCA1 or BRCA2 mutations. Again, there is still so much we don’t know.

Lisa’s story illustrates the inherent cruelty of this disease. Lisa was a model patient–and an active and informed participant in her own care. She uncomplainingly endured harsh treatments as both an early and advanced stage cancer patient.  From 2012 to the first few months of 2015, she tried at least different six courses of treatment—when one failed, she moved on to the next, just as all of the 155,000 US people currently living with metastatic breast cancer routinely do. Eventually the scan, treat, repeat cycle ended—and Lisa became one of the 40,000 U.S. people to die from breast cancer this year.

Lisa’s story also puts the spotlight on a demographic often overlooked when we talk about breast cancer: young moms. Breast cancer is certainly more prevalent in older women–but it can and does happen to young people. According to American Cancer Society figures 232,340 U.S.  women are diagnosed with invasive breast cancer annually. Of those, about 27,000 are women 45 and under, or about 12 percent, and approximately half of those women are postpartum, defined as being within five years of having given birth.

We didn’t know Lisa personally. We admired her outspokenness and willingness to share the details of her life. Lisa may well be remembered for using social media to communicate the details of her life as a cancer patient,  but she was much more than a person with metastatic breast cancer. She was a daughter, a sister, a wife, a mother and a dog lover, particularly of Corgis. Although she was often serious in recounting the details of her illness, she had a quick wit and a great gift for writing.

In 2011, she recalled that her youngest son initially didn’t call her “Mommy” or “Mama.” Instead, he called her by the term of endearment she often use for him: Cutie. “Where’s Cutie?” he used to say.

Godspeed, Cutie.

Thank you for being you.

 

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Social Media and Breast Cancer: A Call for Greater Diversity

February 3, 2014
Barbra's legacy is The Pinkwellchick Foundation.

Barbra’s legacy is The Pinkwellchick Foundation.

The embers are still glowing from the social media firestorm Emma and Bill Keller ignited over the past few weeks. The husband-and-wife journalists each wrote articles about Lisa Bonchek Adams, a young mom diagnosed with metastatic breast cancer in 2012.

Emma Keller, writing online for the Guardian, questioned Adams’ use of social media to publicly chronicle her cancer treatment. (The piece was subsequently withdrawn.)  Bill Keller’s NYT Op-Ed ran less than a week later and essentially portrayed Adams as a dying woman grasping at straws, suggesting her treatment equates to “endless ‘heroic measures’ that may or may not prolong life but assure the final days are clamorous, tense and painful.”

The Kellers obviously don’t understand metastatic breast cancer. The average metastatic breast cancer patient may receive eight or 10 different treatment regimens in sequence. Contrary to the Kellers’ representations, Adams isn’t on her deathbed. What Bill Keller describes as “heroic measures” are what the 155,000 of us with metastatic breast cancer would call “business as usual.”

The Keller/Adams controversy generated a lot of attention and traffic for all involved. But if it shows us the power of social media it also exposes some gaping deficiencies. A cursory look at those blogging, tweeting or otherwise commenting on this issue and metastatic breast cancer in general reveals a distinct absence of diversity.

Among the hundreds of breast cancer blogs, only about 25 or so that we know of feature people with metastatic disease. If there are African American patients blogging about their metastatic breast cancer their voices remain largely in the background. Barbra-Watson Riley one of the very few bloggers, died in November 2013. (The Pinkwellchick Foundation will continue Barbra’s work.)  Outside of the US, we know of a black British woman’s blog, “Afro Chemo.”

And yet, according to a 2012 Pew Internet Research Study, more than one quarter of online African-Americans (28%) use Twitter, with 13% doing so on a typical day. Major news outlets have recently done feature stories on BlackTwitter, “part cultural force, cudgel, entertainment and refuge,” according to the Washington Post.  So when it comes to breast cancer, shouldn’t there be more black social media voices? Shouldn’t we all be talking to each other? Are we missing opportunities to connect?

The Kellers, for all their fascination with Adams and metastatic breast cancer, had no comment on this December 20, 2013 New York Times story:

The cancer divide between black women and white women in the United States is as entrenched as it is startling. In the 1980s, breast cancer survival rates for the two were nearly identical. But since 1991, as improvements in screening and treatment came into use, the gap has widened, with no signs of abating. Although breast cancer is diagnosed in far more white women, black women are far more likely to die of the disease.

According to NYT reporter Tara Parker-Pope, the gap in cancer survival cannot be explained away by biological differences in cancer between blacks and whites. While African-American women are at greater risk of a more aggressive form of cancer known as triple negative, those cancers account for only about 10 percent of diagnoses.

Carole Dickens is a nurse navigator with the CHN

Carole Dickens is a nurse navigator with the CHN

The New York Times article highlighted the work of The Congregational Health Network  (CHN) which builds upon the strong infrastructure of churches to reach deep into hard-to-reach and underserved communities. More than 400 congregations, including Baptist, Methodist, and Church of God in Christ, have signed up to be part of CHN, representing more than 15,000 patients. Eleven hospital employees, known as navigators, work with congregational volunteers, known as liaisons, to help congregation members make their way through the health-care system. The network offers weekly classes ranging from “Caring for the Dying” to “Mental Health First Aid.” More than 2,000 people have taken at least one class.

On the breast cancer front, Carole Dickens, a registered nurse and CHN navigator, visits congregations to present educational seminars and arrange mammograms and other screenings. This program is supported by Komen, the Avon Foundation and others.

A quick search reveals that people on Twitter are talking about CHN and its programs. This is a start–but we’ve all got to do more. Social media give us unprecedented communication power–but only if we use it proactively and creatively.

We desperately need more diversity in social media, especially when it comes to metastatic breast cancer.  We need to talk about why too many Americans continue to die from metastatic breast cancer before their time. We need to acknowledge that the black community is disproportionately represented. We need to make sure our efforts–online and in person–are inclusive. We need to do something now!