Beth Caldwell's impact on metastatic breast cancer

Hutch News

Beth Caldwell's impact on metastatic breast cancer

By living — and dying — out loud, @CultPerfectMoms gave a voice to #stage4 that will not be silenced

Nov. 3, 2017

Beth Caldwell, co-founder of the metastatic breast cancer advocacy group MET UP, at a rally in Washington, D.C.

Photo courtesy of Beth Caldwell

Beth Caldwell was dying.

The 41-year-old former civil rights attorney and mother of two was dying the way she had been living since being diagnosed with metastatic breast cancer 3½  years ago ­— out loud on Twitter and her blog. Determined that the rest of us pay attention to how urgently we need a cure for metastatic disease, she was dying with a candor that encompassed grit, grief, swearing, humor and a huge, huge heart.

“I’ve watched so many friends die, and it’s never been remotely OK,” Caldwell wrote on Oct. 16 in her blog, The Cult of Perfect Motherhood:

“And now, y’all have to watch me die. But, that’s life. It’s shorter than it should be, and it comes with horrible things — pain, fatigue, wheezing, inability to walk more than 20 feet… But you know what? For now, I’m alive. I get to watch my kids dress up in costumes. I get to watch them play with our new dog (her name is Nova and she’s perfect). This is the life I have, and I’m going to enjoy it.

“I’ve come to terms with what’s happening to me, that my end is coming, and that I can’t be what I’ve been to all of you. I hope eventually you’ll be OK with that, or not OK really, that’s the wrong word. What I mean is I hope you’ll be able to take how you feel about me and my death, and put those feelings into action.

Caldwell first put her own feelings into action by writing about them and, in doing so, became a voice for the fear, sadness, anger — and resolve — of others with metastatic breast cancer.

Then, about a year after her diagnosis, she added walk to her talk, co-founding the nonprofit activist group MET UP, lobbying for research funds and organizing “die-ins” to puncture the pink bubble of happy “breast cancer awareness” messages with a sharp reminder that metastatic disease doesn’t have a happy ending.

Dr. Kevin Cheung, an oncologist at Fred Hutchinson Cancer Research Center who studies breast cancer metastasis, met Caldwell in her advocate role. He knows from his own patients how tough it is on a personal level to battle cancer. And yet there was Caldwell, both fighting cancer herself and battling bureaucracies to wring out more support for his and others’ research.

photo of Dr. Kevin Cheung speaking to breast cancer advocates

Dr. Kevin Cheung, a breast cancer oncologist and translational researcher, meets with metastatic breast cancer patients during a tour of his lab on the Fred Hutch campus in April 2016. At far right is Beth Caldwell with her daughter, Maggie.

Photo by Robert Hood / Fred Hutch News Service

“To be a mets patient and also advocating for the mets community is to be able to dial it up to overdrive,” Cheung said. “Beth is one of those special people. She’s helped make us feel there’s a community behind us, rooting for us to make a difference, and also placing on us this awesome responsibility to really ask the right research questions.”

Hearing that the fighter had entered hospice care, Cheung took time to compose not just his words but himself.

“We can compare the world before and after a person has swept through it,” he said. “Beth has definitely made an impact.”

The ‘underbelly of the pink machine’

Caldwell’s passage from the Land of the Well to Cancerland had been more staggering than most. When she felt the lump in 2014, she was just 37, too young to have even had a first routine mammogram. And that was just the start.

J Caldwell

J Caldwell accepted the inaugural "Beth Caldwell Leadership and Advocacy Breakthrough Award" in September on behalf of his wife, NW Mets Conference co-chair Beth Caldwell, who was too ill to attend.

Photo by Robert Hood / Fred Hutch News Service

“On March 18, during a breast self exam in the shower, I found a lump in my left breast. My immediate reaction was disbelief. It was like 5:30 in the morning, and The Hubs was still sleeping, and waking him up with “Honey can you feel that lump in my breast” was not something I wanted to do, so I went to work and tried not to think about it. I had case meetings and was super productive.

“When I left work, I couldn’t distract myself with complex projects anymore, so I went to our car in the parking garage in The Hubs’ building to wait for him, and while I waited, I felt for the lump again. And there it was, right where I had found it that morning. And then I started crying.

“When The Hubs got in the car, I told him. And he hugged me and said, “Have you been carrying this around all day?” And I said yes. And he said ‘It’s OK, we got this. We got this.’”

A doctor’s visit was followed by a mammogram and biopsy. On March 26 — the day that would live on as her “cancerversary” — Caldwell was diagnosed with a neuroendocrine cancer that is extremely rare in the breast. That was still not the worst of it.

The week after that, she was on her way into surgery to have a port inserted for chemotherapy when she got the results of a PET scan showing tumors in her hip and sternum. Hers was among the 6 percent to 10 percent of breast cancers that are de novo metastatic, meaning that at the time they are detected, they have already spread beyond the original organ. 

So much for pink promises of “beating” cancer. Median survival for metastatic breast cancer, even after throwing everything at it, is two to three years. Within two weeks of finding a lump, Caldwell was told her cancer was incurable. She was, she later wrote in her blog, “the underbelly of the pink machine.” She was stage 4 from the get-go. She was going to die.

The blog before cancer

As with any cancer diagnosis, there is a before and an after. The two are not unrelated.

In her before life, Caldwell was already blogging — and puncturing paradigms.  Pre-cancer, her crucible had been a hospital neonatal intensive care unit. Ten years ago, her first child, Jim — The Boy, as he is known in her blog — was born three months prematurely and spent a harrowing nine weeks in the NICU. The powerlessness of seeing their tiny firstborn isolated in an incubator behind lines and tubes left Caldwell and “The Hubs” — her partner of 15 years, J Caldwell — struggling to overcome post-traumatic stress disorder.

Therapy helped. So did writing a blog.

A disability rights attorney for the U.S. Department of Education for 13 years, Caldwell is a native Seattleite who went to Nathan Hale High School and got a law degree from the University of Washington. In between, she got her undergraduate degree in feminist studies at George Washington University in Washington, D.C. But it took the NICU experience for her to really get Betty Friedan’s seminal book, “The Feminine Mystique.”

What was radical and game-changing, she realized, was that Friedan wrote about what women’s lives were really like. “She was telling the truth of her experience,” Caldwell wrote, “and using it to say, ‘This is why things have to change.’”

Her mom blog, Caldwell wrote, was about “teaching ourselves to be good parents without hating ourselves for not being perfect. It’s about an end to guilt and shame over things that are not shameful and that we shouldn’t feel guilty about. And, it’s about supporting each other instead of judging each other, because we all live in glass houses.”

Note that months before she felt the lump in the shower, the disability advocate, the feminist, the guru of good-enough mothering, wrote, “What if I have cancer and I get tired a lot, so I need more breaks than other moms? Does that make me a failure as a mom?”

Telling the truth

Caldwell continued to work as a civil rights attorney through her first round of chemotherapy and a mastectomy. But getting back to “normal,” she learned, was not how stage 4 works.

It’s not that she didn’t appreciate the “hug and chat” sessions when she returned to the office after surgery. She just couldn’t get much done. And Caldwell had always been someone who likes to get things done. So she took disability retirement to concentrate on her new full-time job: being a cancer patient.

On Caldwell’s evolving blog, a longtime friend lamented that new readers did not know the pre-cancer Beth, who “was (is) a brilliant, organized, lovely, bedimpled, talented and caring friend – an old soul — a pie maker, a loving mother, a valiant crusader, raising money for March of Dimes or campaigning for a presidential candidate.”

But for all it strips away, cancer, the friend also pointed out, doesn’t take away who you are. “You have the same traits,” the friend wrote. “I know if I asked, you’d rip out your IV and board a plane to Alabama to help a friend who loves you with all her heart.”

photo of Beth Caldwell

“I never used to think or care much about how I looked. That was before I was bald and missing a breast.” Beth Caldwell in 2015

Photo by Robert Hood / Fred Hutch

Truth. Shorn of her hard-won and proud identity as a civil rights attorney — as well as her left breast, her sex drive, her hair, her energy, her nonchalance about her appearance (“I never used to think or care much about how I looked. That was before I was bald and missing a breast.”), Caldwell was still a crusader. And she was still a writer, determined to tell the truth of her experience.

The cult of the perfect cancer patient

Her first posts on cancer were almost tentative, the news still too raw to hold up to the light.

“I don’t see myself in the mirror anymore,” she wrote on July 31, 2014, examining the scars from the mastectomy. “I only see The Cancer.”

When I try to talk to people about what that feels like….I don’t know, the words just aren’t there… A wise friend said to me that when you have a trauma, it takes time to incorporate it into your psyche and while that is happening, it’s hard to live with. And I think that at some point I will carry cancer without being only cancer, just as the NICU has become part of me without dominating me. But man, it’s hard in the meantime.”

Over that first year, the blog grew to be as honest a guide to breast cancer treatment as a fellow traveler — or a friend striving to understand — could hope to find. What are radiation and chemotherapy like? What is it like to lose a breast? And how do you talk about this to your kids, in this case, both Jim and Maggie — The Girl — now 6 but not quite 3 when Caldwell was diagnosed.

“Cancer doesn’t just happen to the person who has it. It happens to everyone around the person who has it. It’s happening to my kids, who keep asking if my cancer is gone yet, and why I have to quit my job, and why I can’t come play with them when I am chemo’d out or sore and tired after surgery. It’s happening to The Hubs, who is now dealing with the overwhelming task of being a father, holding down a full-time job, and being a patient advocate. And it’s happening to my friends and family, who are terrified of losing me and want me to be OK.”

Beth Caldwell and her family

Beth Caldwell surrounded by the loves of her life: husband J and their children, Maggie and Jim, at Bitter Lake Park in Seattle, spring 2015.

Photo courtesy of Beth Caldwell

'WHO WILL HELP US?’

Caldwell’s family and friends more than rose to the occasion. There were meal trains, help with the kids, attentive sisters and best friends, a superhero of a husband and an oncologist — Seattle Cancer Care Alliance’s Dr. Edmond Marzbani, aka #bestdocever — who became a friend.

Still, there was no escaping the loneliness — the sheer aloneness — of being the one with metastatic breast cancer. At least, that is, until Caldwell attended a Living Beyond Breast Cancer conference in April 2015 that introduced her to others metsters.

That moment — when she realized she wasn’t alone — is when she became a mets activist.

“I met the most amazing group of women — sisters living the same life as me, filled with treatments and fear and hope and loss. We laughed so hard, and bravely fought back tears, and hugged so much. So much.

“A group of us talked about how frustrated — no, how angry we are about what metastatic breast cancer is doing to us, to each other. And someone said ‘108 of us die every day in this country.’ So we formulated a plan: we would organize a die-in at the conference the following morning. We decided we would organize 108 of the women attending the conference to lay down in the hallway of the conference facility, in honor of the 108 women who would die that day, and every day, because of this goddamn awful disease.

“And so, at 10:45 yesterday morning, we lay on the floor of a hotel in Philadelphia, and held hands with each other, and I wept while my college BFF read the eulogy for us. She said, ‘Dearly beloved, we are gathered here to say our goodbyes to the 108 Americans who will die of metastatic breast cancer TODAY, and EVERY day, because there is no cure for our disease. They are our friends, our mothers, our daughters, our sisters, and they deserve better. They deserve a cure, and we honor their memory by DEMANDING IT, not someday, but NOW.’ 

“When it was over, and I got to the airport, I cried my eyes out. All the emotions of the weekend washed over me like a wave, but the biggest feeling came from knowing that I may never see these women again.”

It’s no accident that the name, MET UP was patterned on the iconic AIDS group ACT UP. Meeting vibrant people with metastatic breast cancer — like herself — was, Caldwell wrote, like living through the AIDS crisis in the 1980s, when everyone died.

Drs. Kelly Shanahan and Kevin Cheung

Physician and "mets" patient Dr. Kelly Shanahan with Fred Hutch breast cancer oncologist Dr. Kevin Cheung

Photo by Robert Hood / Fred Hutch News Service

“It makes you want to scream out, ‘WHO WILL HELP US?’ Then I realized that it has to begin with us. We have to try to save each other. We have to turn our grief and our love for each other into action, to change the landscape for metastatic breast cancer so that no more families have to bury a loved one so young.”

Today, MET UP’s ranks are filled with an army of activist metsters and allies who call Caldwell their mentor.

“Beth helped me to find my voice as an advocate for metastatic breast cancer,” said Dr. Kelly Shanahan, a physician and metastatic breast cancer patient from Lake Tahoe, Nevada. “Her raw honesty, her eloquence, her passion lit a fire in me and thousands of others.”

Speaking out — and being heard

Caldwell’s writing mirrored her growing advocacy, becoming even more intense, ever more urgent. In June 2015, she wrote, “After over a year of living with metastatic breast cancer, I’ve stopped being polite and started getting real.”

Late that month, she went to Olympia, Washington, with Fred Hutch writer and breast cancer survivor and advocate Diane Mapes, editor and lymphoma survivor Kristen Woodward and other patient advocates to testify before the state legislature to support a bill funding cancer research. The experience was electrifying.

Patient advocates and researchers testified before the Washington state legislature in Olympia

Patient advocates and researchers testified before the Washington state legislature in Olympia in June 2015. Left to right, Kristen Woodward, Natasha Black, Beth Caldwell, Dr. Jon Cooper and Diane Mapes.

Photo courtesy of Kristen Woodward

“Before I spoke, everyone was still fidgeting and there were plenty of people still whispering to each other. And then I started talking, and it was like the air had been sucked out of the room — everyone stopped. And I knew they were listening. It was SUCH a good feeling. When you have cancer, there is so much out of your control — how you feel, whether it progresses — so to have a moment where I felt that I was doing something, that I was speaking for my community and actually being heard, that was powerful.”

The bill passed both houses of the legislature by overwhelming margins and was signed by the governor. Caldwell was on a roll.

On her blog, she decried the pink-ribboned “Save the ta-tas” and “Boobies make me smile” slogans that annually take over the “Breast Cancer Awareness” month of October.

“Focusing on our disease originating in our breasts, rather than seeing us as whole people, dehumanizes us. And it makes women feel that if they have a mastectomy, they’re no longer worthwhile, or feminine, or real women. When I lost my breast, it almost broke me emotionally. Almost. This sort of campaign brings me right back to that feeling, and it does the same for many other women who have had their breasts amputated in a desperate attempt to save our lives — because our lives are what matter, not our breasts. … All this pink shit, the bras and the feather boas? They trivialize a deadly disease. They make sport of our deaths. Actually, what they do is erase our deaths.”

In October 2015, MET UP staged another die-in, this time in Washington, D.C. “This year, us metsters aren’t going to just sit by and wish it was different,” Caldwell wrote.

Afterwards, she and other MET UP leaders met with congressional staffers to ask for increased funding for cancer research across the board, including for metastatic lung, pancreatic and other terminal cancers that are, she wrote, “equally as horrific.”

They also asked that 30 percent of breast cancer research funds go to metastatic disease, up from the 7 percent now allocated. And they asked for the SEER database, which tracks cancer incidence, to begin tracking when a patient has a metastatic recurrence.

Over and over, Caldwell showed up — once in a wheelchair, straight from killer chemo — to press the case for metsters and the larger cancer community. And ever the civil rights attorney, she used her growing voice to speak up for others.

“We need to be outraged that our African-American sisters are dying in much larger numbers than we are. And we need to ask the crucial question: how can we, as white women with breast cancer, help?”

The personal is political

Her political activism carried a personal toll. Take her testimony to the Washington legislature. When her son, Jim, learned that his dad had recorded it, he wanted to see.

What to do? Although they had talked to their then 8-year-old about his mom’s cancer, she and J had never been as direct as she’d been in her testimony, in which she stated repeatedly that she would die of her disease.

“But the cat was out of the bag, and I thought to myself, ‘He’s aware that death is a risk with cancer. Maybe it’s time.’ So I let him watch it. And when he heard me say ‘I will die,’ he turned to me, and said, ‘Mommy, are you going to die?’ And I said, ‘Someday, sweetie, but not today!’ in as cheerful a voice as I could muster.

But at bedtime that night, as I was tucking him in, he said, ‘Mom, I’m going to miss you when you die.’ And I said, ‘Oh sweetie, I want to hug you right now.’ And we hugged while I pulled myself together and I said, ‘We all miss people when they die. But you know, we will always have our memories of them, so they’re not really gone.’ And that seemed to bring him some comfort, and we hugged again. I walked out of the room, down the stairs, and halfway down the hallway before collapsing in a puddle of sobs on the floor.”

There were highs — an epic family vacation to New York City. And lows like fatigue, “my constant companion,” and other side effects of continual treatment, including, at one point, a condition called hand-foot syndrome in which the skin on Caldwell’s palms and soles sloughed off in horror-film fashion.

In a January 2016 “ALL CAPS FREAK-OUT!!!,” she described an unexpected payoff from months of toxic therapies: her tumors had shrunk too much to be seen on a scan, giving her the coveted status of no evidence of disease, or NED.

In a blog entry called “Hanging from the side of a cliff,” she described the excitement — and terror — this invoked.

“Hope is like a rope that kind people who just don’t get what metster life is like will throw down to you and say, ‘Here, climb this.’ But the problem is, the higher you climb, the harder you fall. And you WILL fall. NED doesn’t mean cured. The cancer is still in there, trying to figure out how to overcome the drug I’m on and start growing again.”

In less than three months, the cancer roared back. Her goal became seeing The Girl, Maggie, start kindergarten in the fall of 2017.

Meanwhile her friends, her fellow metsters, kept dying.

“The band is marching on, while there is a crisis of women dying and dying and dying. I’ve had three friends die in the last three weeks. I have two more friends in hospice right now. How many more of us have to die before someone does something to stop this?”

And so Caldwell did what she always did: She dialed it up.

photo of Fred Hutch President and Director Gary Gilliland, immunotherapy researcher Dr. Stan Riddell and metastatic breast cancer patient and advocate Beth Caldwell.

Beth Caldwell, right, came to the Fred Hutch campus in a wheelchair after receiving chemotherapy in March 2017 to speak out against proposed federal cuts to cancer research alongside Hutch President and Director Gary Gilliland (far left) and immunotherapy researcher Dr. Stan Riddell.

Photo by Robert Hood / Fred Hutch News Service

‘THANK YOU!’

“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. 

Mary Engel is a staff writer at Fred Hutchinson Cancer Research Center. Previously, she covered medicine and health policy for newspapers including the Los Angeles Times, where her editorials were part of a healthcare series that won the Pulitzer Prize for Public Service. She also was a fellow at the year-long MIT Knight Science Journalism program. Reach her at mengel@fredhutch.org or on Twitter, @Engel140.

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