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Notes From The 'Die-In,' A Demonstration For Metastatic Breast Cancer

This article is more than 8 years old.

On the west lawn of the U.S. Capitol, a hundred or so women with advanced, incurable breast cancer, along with some friends, lay on the grass in spoke-like formation. Nearby, a church bell tolled at 12 noon, precisely as the demonstration began.

"The die-in reflects our reality," Beth Caldwell told me earlier that October day. At age 39, she's a lawyer, mother of two children, and one of the organizers. She wore a black cap over her bald head. A pale pink and gray scarf adorned her otherwise black outfit. She lives in Seattle and carries a terminal diagnosis: stage four, metastatic breast cancer.

In the hour before the die-in, the participants gathered. Most appeared young, under age 50 years. Many hugged and chatted with old friends, recognized and embraced online acquaintances for the first time. Meanwhile volunteer marshals, marked by black bands tied around the arm, fielded questions and handed out numbered placards. I encountered families, including breast cancer patients' adult siblings, spouses, and a handful of children.

When Caldwell took the microphone, she summed up her condition, and fate: "In April, 2014, I found out I was going to die of metastatic breast cancer." She mentioned the slim odds of living to see her daughter, age three, through kindergarten. She told about her son, age eight, asking her husband about how much longer she'll be around. She shared some bleak statistics about deaths from metastatic breast cancer, and said: "The only thing that will change the horrific reality is research."

The participants remained prone through several speeches. Occasionally they applauded, raising their hands and clapping in a manner that, from my perspective at the perimeter, resembled wings in the low sky. I could see a half dozen people standing on a high terrace of the Capitol building, to the east. It seemed they were gazing down in our direction. I wondered if they were they watching the die-in from their perch, or if perhaps they'd just stepped outside to catch some fresh air and gossip. A few park workers lingered nearby. An occasional tourist stopped.

Last spring, Caldwell and a few others hatched the Metastatic breast cancer Exchange To Unleash Power, METUP.org. The new group models its style of breast cancer activism on ACTUP, an AIDS advocacy group that emerged before the HIV epidemic peaked in the United States. In 1987, ACTUP gained traction amid a sense of crisis – and anger, and frustration – among gay men and others, in a community overwhelmed by AIDS-related deaths, then impatient with the pace of research and drug development. In almost 30 years since, AIDS has been rendered a treatable and chronic illness, and deaths have declined.

"We feel a strong kinship with AIDS patients," Caldwell says in a video promoting the die-in and new breast cancer organization. "At the height of the AIDS crisis, there were about forty thousand deaths per year in the United States, and that's how many people die of metastatic breast cancer every year in the United States."

While very few people, if any, die from early-stage breast cancer, some 113 succumb, on average every day in the United States, to a metastatic form – when malignant cells from the breast have migrated and settled, causing trouble, in other body parts like bone, liver, lungs or brain. More than half of those with metastatic breast cancer die within three years; only a tiny fraction make it to the ten-year mark, after diagnosis. Worldwide, mortality from metastatic breast cancer approaches 1,500 deaths, every day; this approximates one death per minute.

The new organization aims to change the tone of awareness, to shift the public's attention – and a greater fraction of breast cancer research dollars – toward needs of patients with metastatic disease. Before and after the die-in, METUP activists met with senators and congressional representatives to talk about mending cuts to the National Cancer Institute's budget, and directing more funds to investigate metastatic breast cancer.

Toward the end, a METUP leader called for a moment of silence to remember those who die from metastatic breast cancer every day. She then began to sing an old American song, "Can the Circle Be Unbroken." The lyrics go like this:

I was standing by my window

On one cold and cloudy day

And I saw the hearse come rolling

For to carry my mother away

Can the circle be unbroken

Bye and bye, Lord, bye and bye…

   Oh, I told the undertaker

Undertaker, please drive slow

For this body you are hauling

How I hate to see her go…

The forecast had been for clouds that day in D.C., with a good chance of rain. But an unexpectedly bright, burning October sun penetrated the event. The METUP organizers had distributed lyrics on the flip sides of the numbered sheets. Those papers, held up above the participants' faces, shielded them, but insufficiently, from the harsh rays.

Before the demonstration ended, an organizer struck a chime 113 times, once for each U.S. person who would die that day from metastatic breast cancer. The ringing took several minutes; it seemed longer. A woman in a red shirt was crying. A teenage boy at the end of one of the die-in spokes, with earbuds, scrolled on his phone.

The die-in passed uneventfully. There was no confrontation with police. None of the women with metastatic breast cancer was arrested. There was no shouting, nor rage as I recall from the days and images of ACTUP. It was quiet, and perhaps too calm.

*with apology, to all those who participated in the die-in and whose names could not be included in this article, and with respect, for all those who wanted to be there, but could not make it - ES

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