Saying Goodbye to Lisa Bonchek Adams

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.