Metastatic Breast Cancer: How Holley Kitchen Changed the Game

By on January 27th, 2016 Categories: The Breast Cancer Journey

Holley Kitchen seemed to arrive out of nowhere. She was 42 and living in Cedar Park, Texas, with her husband and two boys, and she’d been living with metastatic breast cancer since 2013. In the spring of 2015, Holley posted a homemade video on Facebook. In the video, she used a series of note cards and poignant, even humorous facial expressions to explain what it’s like to have metastatic breast cancer. She encouraged people to visit Metastatic Breast Cancer Network and Breastcancer.org to learn more. Within one week, the video was viewed 50 million times. Holley was contacted by numerous local and national media teams, including Good Morning America, who sent a production crew to her house for an interview. She was happy to oblige. “I want to get the message out!” she wrote to me in an email.

Breastcancer.org’s senior editor, Jamie DePolo, interviewed Holley for a podcast the week after her video went viral.

On the phone, she was warm and simultaneously emphatic about raising awareness. And she laughed — a lot. “It’s hard for me to not be silly. That’s how I’ve always been!” It was easy to see why so many people with metastatic breast cancer gravitated towards her. She was down-to-earth, authentic, funny, and driven to help other diagnosed women feel less alone. She kept us updated on her progress regularly through Facebook, posting selfies and videos to talk to her followers, getting visibly (and sometimes hilariously) motivated to go in for more treatments and scans, hugging her family. She gave the thumbs-up when she got good news, and was honest when the news was not so good. She started a Facebook community, Holley Kitchen and the Cancer Lifers, where she empowered women with metastatic disease to tell their stories. The page has over 23,000 followers.

Holley was featured prominently in a photo series called Story Half Told, funded by Pfizer and featuring the stories of four women with metastatic disease. Each woman was assigned a photographer to follow her everyday life. Holley’s photographer was Angelo Merendino. In October, Holley was flown to New York for the Story Half Told exhibition.

In December, Holley let her audience know that her condition had worsened. Her community rallied around her, using Holley’s requested hashtag, #stormtheheavens. The morning of January 12, 2016, we learned that Holley had passed away.

Together with the Metastatic Breast Cancer Alliance, Pfizer, the Breast Cancer Resource Center, and the Metastatic Breast Cancer Network, we’re sharing experiences of meeting and working with Holley — and how she changed the way people think about metastatic breast cancer.

We invite you to join us and share your thoughts about Holley in the comments area below.

 *    *    *

“Holley touched and transformed everyone’s life on the Breastcancer.org team and in our worldwide community. We feel her loss deeply and send our deepest sympathies to her wonderful family. It was a true honor and inspiration to work with Holley — as we ditched the whispers and used our full voices to let millions more people know about the dangerous challenges confronting women and their families facing metastatic disease. For sure, Holley will live on through Breastcancer.org programs that bring research, education, support, and inspiration to the metastatic breast cancer community. Inspired by Holley’s fierce determination, we are deeply committed to sharing the stories of real women living with metastatic disease.”

Marisa Weiss, M.D.
Chief Medical Officer, Breastcancer.org

 *    *    *

“We could not do our work without the vitality, intelligence, and passion of our advocates. Holley embodied these characteristics, and when combined with her candid personality she was a force to be reckoned with. Whether it was on the phone, on email, on Facebook, or on camera, she sparkled with ‘aliveness’ as she spoke about living with the disease of metastatic breast cancer and what needed to change. Everyone fell in love with her and wanted to make the world a better place because of her. Her death is devastating for so many. A small consolation is we are so fortunate that she left us with her legacy of bringing the facts of the disease to so many people around the world.”

Katherine Crawford-Gray
Director, Metastatic Breast Cancer Alliance

  *    *    *

“Holley, her husband Beep, and their two boys, Colby and Bryson, welcomed me into their home and treated me like a member of their family. I am an honorary uncle to the boys. In a short period of time we made memories that will last a lifetime. I am thankful to have had the opportunity to photograph such a loving family for the Story Half Told campaign.

“Holley touched us all with her boundless energy, her radiant smile, and most important of all, her love for her family. Holley’s kindness and commitment to her beliefs inspire me to look closer at myself as a person. I (and I imagine everyone who knew her) am forever thankful to have shared time with such a loving human being. Please keep Beep, Colby, and Bryson in your thoughts as they go through this challenging time.”

Angelo Merendino, photographer
Story Half Told, Pfizer

 *    *    *

“Holley was a client at BCRC [Breast Cancer Resource Center] when she was first diagnosed. She became part of our Pink Ribbon Cowgirls support group for young women with breast cancer. We realized there was a bigger need for the metastatic community. The Lotus Forum is that group — she became part of that, and she modeled for our fundraiser.

“The women in the support groups become very very connected — like family. People knew Holley as a BCRC member and volunteer. And people who were ancillary in our world have been touched by what she began and did on such a broad level. The conversation had not happened before, despite everyone’s best interests.

“I think for anyone who’s ever been touched by any cancer, by Holley, her story, and her beauty, everyone says, ‘We’ve got to keep this going and let people know that metastatic breast cancer still exists, and people die at alarming rates despite all the research dollars.’ She brought together very different people who want to continue the conversation and make sure what she started doesn’t stop.

“The thing Holley brought to every meeting recently was her humor, and people who come to that group always expected her to be in tears. But it didn’t work that way. When you have a newly metastatic woman in the group and everything changes — women are laughing. ‘Can you believe this happened to me when I was having chemo the other day? Ha ha.’ It was another gift she was able to give a lot of other women — that funniness, the faces she’d make — remarkable. She’d encourage humor for everyone. As close as the women become, it takes on a life of its own. It’s no longer the BCRC — it’s their community. Even though we allow the space, and make it safe, it’s ultimately the people in the group who make it wonderful and meaningful for the others. They formed a family. They came together frequently and talked on phone constantly and became each other’s lifeline through Holley’s experience.

“The BCRC has about 250 volunteers, and we have a fundraiser where we spotlight 70 women who are survivors — all stages, all walks of life — in a fashion show. So volunteers who saw Holley on the runway are coming together and saying, ‘We have to continue what she started.’ What a gift!

“I watched an interview she did the other day with a local TV affiliate. She said, ‘I hope when I’m gone, my children can Google my name and see that I made a difference, and they can see my face and hear my voice.’ She made a tremendous difference, and it was amazing. It’s a legacy. She was everywhere!”

Ray Anne Evans
Executive Director, Breast Cancer Resource Center
Photo: Flashbax23 Photography and Breast Cancer Resource Center

 *    *    *

“After her video about what it’s like to live with metastatic disease made her an overnight media sensation, Holley was inundated with requests for interviews, appearances, endorsements — everyone, including me, wanted her time. Of course that was the one thing that she didn’t have enough of.

“Yet she was extremely gracious and accommodating, carving out room in her packed schedule to record a podcast for Breastcancer.org with me. Her emails were full of exclamation points and smiley faces; her on-air personality was gregarious and joyful. She kept thanking *me* for asking her to be on the podcast.

“When I learned that Holley had died, I immediately thought of another Texan whose words I admire. To me, Townes Van Zandt’s ‘To Live Is To Fly’ captures Holley’s quest to make each day count, to live and love fiercely, and to face anything that came her way. I’m pretty sure Holley is soaring now.”

To live is to fly
Low and high,
So shake the dust off of your wings
And the tears out of your eyes
Goodbye to all my friends
–Townes Van Zandt

Jamie DePolo
Senior Editor, Breastcancer.org

 *    *    *

“The Metastatic Breast Cancer Network has been working for a long time to make people aware that metastatic breast cancer and early breast cancer are two different things, and that there’s not enough research for metastatic breast cancer. Women and men die because we haven’t found a cure for metastatic breast cancer.

“With that context, Holley was a game changer for the patient community. She was certainly charismatic, and she was courageous in being willing to share publicly her story. She communicated in a unique way that none of us had seen before. Anyone who saw her video did not know what she sounded like. I’m a former principal and teacher. When you educate people, you normally verbally communicate with them. But you also teach visually. So Holley did this amazing thing by informing and educating people through silence and handwritten cards.

“We were, at MBCN, so honored that she turned to our website and Breastcancer.org to get the facts about metastatic breast cancer. So she made sure that in educating people she gave them facts and straightforward information. She was definitely a game changer. And it wasn’t only in the way she delivered the message; her physical presence let people know that metastatic breast cancer is not just a disease of women after menopause. Metastatic breast cancer strikes people who are young, who have babies and little children. I came to talk to her on the phone and meet her and her husband and her two adorable little guys. It was like, ‘Why this woman? Why any woman?’ and I think it’s nearly 50 million people who saw this said, ‘How could this happen at this age?’

Photo used with permission from Holley Kitchen.


“We need to carry on, and we will carry on, but I doubt that there’ll be another Holley anytime soon. She was an amazing person and very transformative in what she did. She awakened others to the metastatic breast cancer community and their needs. Patients want their needs to be known in a very powerful way, not only to the public, but also to scientists and clinicians, because it’s going to take all of us — all those groups — to lengthen the lives of patients.

“What I think is contributing to the growing momentum in patients, and the growing expectations of the metastatic breast cancer community, is that patients with certain subtypes of metastatic breast cancer are living longer. As we live longer, we have more time to articulate our needs, to stand up for ourselves, to stand up for others, and to say, ‘Wait a minute! Why does this continue to shorten lives?’

“Ghandi said, ‘You may never know what results come of your actions, but if you do nothing there will be no results.’ What struck me is that Holley said, ‘I hope that 1,000 people will see this video.’ At first, she didn’t really know what results would come. But she didn’t give up hope. She said ‘I’m going to try to do something.’ I’m so glad she lived long enough to know that 50 million people saw what she did.”

Shirley Mertz
President, Metastatic Breast Cancer Network
Executive Committee, Metastatic Breast Cancer Alliance

 

 

Claire Nixon, Editorial Director — Claire directs a team of writers, researchers, content managers, and physicians through the creation of high-integrity web content. She brings 20 years of experience in health communications and journalism to the Breastcancer.org team, as well as the lens of the patient – she was treated for breast cancer in 1998 and again in 2012. In her off-time, Claire enjoys creative writing, independent films, meditation, and the ocean.

Comments

Leave a Comment

To keep our Community safe, you must register to start a topic, post a reply, or use the Chat Rooms. If you are an existing member of our Discussion Boards, you can log in to access your account. Please review our Privacy Statement before registering.

Register now or log in to your account.

Back to top

Breastcancer.org is a non-profit organization dedicated to providing information and community to those touched by this disease. Learn more about our commitment to providing complete, accurate, and private breast cancer information.

Breastcancer.org 120 East Lancaster Avenue, Suite 201 Ardmore, PA 19003

© 2018 Breastcancer.org - All rights reserved.