“Beth revolutionized the landscape of breast cancer,” said Caldwell’s partner in founding MET UP, fellow metster Jennie Grimes. Rather than televised, this revolution was tweeted.
The social media maven used her increasingly visible Twitter and Facebook accounts to create accountability for breast cancer organizations and pharmaceutical and insurance companies. By tweeting, posting messages on Facebook and telling her own and others’ personal stories — “through the virtual empowerment of the patient voice,” as Grimes put it — Caldwell pressured drug companies into providing medications otherwise unavailable to patients, shamed insurance companies into overturning payment denials and convinced breast cancer organizations to stop neglecting metastatic disease.
“Beth’s own voice in her blog is rich with a combination of dark humor, vulnerability, joy, fear and the truth of living with, and dying from, metastatic breast cancer,” Grimes said. “Beth has shown me the importance and reach of using one’s own difficult experience to make change for others, even if that change and advocacy may never directly affect you. She has forever changed me — and the cancer world — for the better.”
To Dr. Corrie Painter, who with Dr. Nikhil Wagle runs the Metastatic Breast Cancer Project at the Broad Institute of MIT and Harvard, Caldwell has been “a steadfast partner in everything I’ve been working toward with the metastatic breast cancer community.” The MBC Project is an unusual collaboration between patients and researchers that is patient- and social media–driven. In other words, right up Caldwell’s alley. Not surprisingly, Caldwell was one of the first to respond when Painter put out a call for MBC patient volunteers via Twitter.
“Beth has been a mentor to me and countless others,” said Painter, a scientist-turned-patient-turned-advocate herself (she has a rare and aggressive cancer called angiosarcoma). “She tells it as she’s seen it and inspires others to question the status quo. Things don’t change if they aren’t challenged.”
Painter described the first time she “met” Caldwell over (naturally) a video chat.
“When her face appeared, I was so happy and grateful for her willingness to help, I immediately said, “THANK YOU!’” Painter said. “And she looked at me and immediately said ‘THANK YOU!’ and we both looked at each other for a moment as we recognized that same sense of urgency in each other’s faces.”
Painter described herself as gutted at the thought of losing her friend and partner.
“I never want to refer to her in the past tense,” she said. “I want her forever present. I will honor her always by giving everything that I am to helping others live.”
A virtual vigil
Here is one measure of Caldwell’s impact. When it became clear that every grueling treatment she had taken to stay alive as long as possible for The Hubs, The Boy, The Girl, the friends, the community, was no longer working, the cancer warrior wrote that she had started hospice care. And, via Twitter, she lamented that she would probably die before eggnog latte season began.
And do you know what? Her hometown coffee company, Starbucks, made and delivered one of her beloved eggnog lattes to her house.
As the days passed, the tweets — mostly retweets now — slowed, then stopped. “Can’t breathe,” she wrote on her blog on Oct. 25, then — classic — took the home oxygen tank delivery company to task for taking so long.
J Caldwell took over the updates and helped post the last entry his wife wrote for her blog:
“We knew there was nothing more that could be done for me. The Hubs and I went home and cried. A lot. It felt like when we found out that I had stage 4 cancer — we went home and climbed in bed and cried and faced my death. And now we wait for my death.”
The kids stayed home from school. Sisters and best friends gathered. Around the country, metsters and allies kept a virtual vigil.
The word came on the evening of Nov. 2 — All Souls’ Day — one week and one day shy of Beth and J Caldwell’s 15th wedding anniversary: Beth Caldwell had passed.
“She was mighty,” wrote J. “She is loved and was surrounded by her kith and kin and the first dog she ever owned. I held her when she went. It was a rainy autumn day in Seattle, which switched to sunshine in the afternoon, which is perfect for a native Seattleite. Safe journey, my love. #forbeth.”
Epilogue: fallen trees
A former Girl Scout who volunteered as an adult until sidelined by cancer, Caldwell often recalled hiking a favorite trail where she first learned how a forest renews itself. Fallen trees become nurse logs, nurturing mosses and ferns and eventually new trees, she wrote in a September 2016 blog post. Trees became her metaphor for her metastatic community, and even as her friends fell to the disease, she strove through her grief to find a message.
“The only thing that brings me any sense of meaning these days is to think of these fallen trees as nurse logs. Their memories, their lives, their children, their passions, their faces, their senses of humor, their wisdom, their spirits, their beautiful beautiful beautiful spirits are nurturing us, feeding us, giving us strength to go on, to demand change, to bring research to our friends, to fight against death death death so much death. Their falling leaves a hole in the forest canopy, but their souls are bringing new life to our movement and nutrients to keep us growing.
“And someday this forest will cover the world.”
Please join us in remembering Beth Caldwell on Facebook.
Memorial gifts may be made to In Memory of Beth Caldwell, a campaign created by friends of Beth at her request. All donations will go directly to support Dr. Kevin Cheung’s research in metastatic breast cancer.