• >
• People

Holley Kitchen’s Fight Song

How one woman and her viral video are changing the conversation about metastatic breast cancer.

Chances are that if you’ve logged on to any social media website in the last year, you’ve seen a video in which a woman silently relays facts about metastatic breast cancer by flipping through notecards as Rachel Platten’s hit “Fight Song” plays in the background. Holley Kitchen, the Cedar Park mom and metastatic breast-cancer “lifer,” had no idea her video would be viewed more than 50 million times and reach a worldwide audience.

“I evidently struck a nerve with a lot of people,” Kitchen says. “[The video] was from my heart. It was things that I didn’t know before my diagnosis that I thought someone walking on the street would want or need to know about metastatic breast cancer. I think for so long, we have made breast cancer into such a survivable disease, and we don’t realize that not everyone survives it. Almost 120 people a day die of metastatic breast cancer.” 

Before making the video, Kitchen felt like she wanted to do something to educate people about metastatic breast cancer, but didn’t know what to do until the idea for a video surfaced repeatedly during her daily prayers. She picked up some notecards the next time she was at the grocery store, and filmed the video on her bedroom floor with her iPhone while her husband and two sons played video games in the next room.

“I didn’t carve time out [to make the video]; I just sat down at my kitchen table and wrote down what was in my heart,” she says. “I decided to put it to the music of Rachel Platten’s ‘Fight Song.’ I’d only heard the song one other time (Another metastatic lifer sister of mine introduced me to it.), and I thought, ‘That would be great.’ ”

Kitchen remembers hoping to get just 1,000 views on her video.

“It didn’t take me long [to make the video],” she says, “maybe three tries. I thought, ‘That’ll do. I’ll post it on Facebook. I hope 1,000 people see it. That would be really cool.’ ”

By just the next morning, the video had nearly 1 million views, and quickly captured the attention of local and national media. Just a week later, Kitchen appeared on Good Morning America.

“To me, it wasn’t necessarily cool that I was on Good Morning America, but that the conversation of metastatic breast cancer was being talked about on Good Morning America during the summer, when moms are usually at home,” Kitchen says. “After they ran my piece, they actually had an MD there to talk about what metastatic breast cancer is. That was huge for my group.”

Thousands of friend requests to her personal Facebook page in the aftermath prompted Kitchen to start a Facebook community page, Holley Kitchen: And the Cancer Lifers, which has more than 18,000 likes. Kitchen describes herself as a “lifer” rather than a survivor to reflect the fact that while metastatic breast cancer is treatable, the disease itself isn’t curable. While she isn’t sure about whether she is the first person to use the term, she certainly popularized it.

“I don’t associate myself with being a survivor. I will never be free of this cancer. It’s with me for the rest of my life. I had so many people reach out to me and say, ‘That’s what I am.’ ‘Lifer’ was something that I could relate to,” Kitchen says.

Kitchen’s Cancer Lifers community page is a glimpse into her day-to-day life, and she most often shares updates about her treatment. The page offers people a way to connect with Kitchen and vice versa. On particularly difficult days, the comments on her posts lift her spirits.

“I try to be as real with my life as possible,” Kitchen says. “I post the good and bad days because I want people to know the reality. Facebook has made us this June Cleaver world, where all you see is the positive, and I don’t believe in that. I believe in being real and down-to-earth. I think that’s why so many people have connected with me. When you can touch someone’s heart and they can relate to something, I think that’s huge. That page lifts my spirits a lot. I can post something and see people reaching out. It kind of restores my faith in humanity.”

The page also provides a supportive environment for individuals who may not have access to local support groups, and for people who want to give or receive advice and information.

“A lot of people maybe don’t want to form a local support group because you’re going to end up losing each other. Not everyone is a survivor. You have to face mortality,” Kitchen says. “Two weeks ago, we lost one of our Pink Ribbon Cowgirls. It’s a crushing blow. … I also think people are a lot braver behind a computer, and sometimes, they’ll be more open with their feelings than if they were sitting and talking with someone face to face.

“So many cancer patients are recovering from surgery or in the hospital, and they can just pull out their laptop and chat with someone. It’s nice because someone can say, ‘Hey, I’m starting this drug. Does anybody know about it?’ And they’ll have someone answer. It’s the coolest thing. I’m really proud of that.”

Kitchen says her main reason for making the video was to educate people, which is important to her largely because of her own experience. Kitchen was diagnosed with Stage 3 breast cancer at age 39, after finding a lump in her breast while breastfeeding her youngest son.

“I had plenty of lumps before, and they were a clogged milk duct. Life was busy and I didn’t think about it [because] I had two kids,” Kitchen remembers. “When I went to go get my mammogram, the radiologist read the images and she said, ‘On a scale of one to 10, you’re like a 12. We know this is cancer.’ Cancer hadn’t even entered my mind; it was not even a possibility for me.”

Afterward, Kitchen underwent six months of chemotherapy and 26 grueling rounds of radiation therapy, followed by a double mastectomy, hysterectomy and a reconstruction surgery she describes as very difficult. The cancer came back about a year later. This time, Kitchen was diagnosed with metastatic or Stage 4 breast cancer. Metastatic breast cancer occurs when breast cancer spreads beyond the breast to other organs in the body, most commonly to the brain, bones, liver and lungs. Currently, there is no cure for metastatic breast cancer, and treatment focuses on managing the disease’s progression and improving patients’ quality of life.

“When my doctor came back into the room and said to me, ‘It’s back, and it’s in your bones,’ I was like, ‘Oh, do I have bone cancer now?’ She had to walk me through what metastatic breast cancer was, and that didn’t feel good to me. The word ‘cancer’ already has so many unknowns associated with it, so it was even more uncomfortable and unnerving for me,” Kitchen says.

Education helps breast-cancer patients and the general public better understand a disease that affects so many of us. Breast cancer is the most common cancer in women and the second-leading cause of cancer death in women.

“I feel like education is the key. [After the video,] I had people reach out and say, ‘Gosh, I never knew that,’ or ‘Wow, that’s what my aunt died of and I never understood it,’ or, ‘I’m two-and-a-half-years post-breast cancer and I’ve never had a checkup. Do you think I need one?’ That makes my head spin, and not in a good way,” Kitchen says. “I’m shocked that any oncologist would not follow up with a breast-cancer patient, but maybe that patient just kept canceling their appointments thinking, ‘Well, I don’t have breasts. I can’t get breast cancer.’ Well, I thought that too. I had no female organs in my body and my breast cancer came back. There’s an educational gap that needs to be bridged.”

In her video, Kitchen also addresses the conversation, or lack thereof, about metastatic breast cancer, holding up two cards that read, “People don’t like to talk about metastatic breast cancer…because it is frightening!”

Of some of the more well known breast-cancer organizations, Kitchen notes, “They love to talk about their survivors, but they don’t want to talk about their lifers [because] we don’t have a happy ending.”

In addition to a lack of conversation, there’s also a lack of funding for metastatic breast-cancer research: The Metastatic Breast Cancer Network estimates that just 5 percent of breast-cancer-research funding is specifically dedicated to metastatic breast cancer. Metavivor, another organization dedicated to metastatic breast-cancer awareness and research, puts that number at only 2 percent. By comparison, 30 percent of breast-cancer patients who are Stage 1, 2 or 3 will metastasize.

“My question is why? Ninety-nine percent of patients die from metastatic breast cancer,” Kitchen says. “What if they came up with the drug to turn the light switch off and make the cancer go to sleep? We call it ‘no evidence of disease.’ We all ache for hearing that. It’s difficult to achieve, but it’s possible. I want to make a change so more people want to find that drug.”

By making hers the face of more than 155,000 metastatic breast-cancer lifers living in the United States, Kitchen has become one of the change-makers who is sure to make a difference.

“I mean, the statistics are not in our favor. We don’t like to talk about them in our group. They’re there, and we know they’re there. They’re always in the back of our minds,” Kitchen says. “But what if we could make a shift? What if we can change statistics? It’s kind of starting to happen. I’m excited for my friends. I’m excited because maybe we can make a change. I’m excited because there are people out there that are noticing our group.”

A large part of Kitchen’s video is dedicated to the unintentionally insensitive comments people have made to her, such as, “But, you look so healthy,” and “You will beat this.”

“People are just trying to help, and maybe I shouldn’t have pointed out the ridiculous things people say to us with cancer, but that part [of the video] is also why a lot of people connected with me,” Kitchen explains. “I think it stems from people thinking they need to say the right thing. Instead of saying, ‘It sucks what you’re going through,’ people want to try and smooth it over and make it better, but there’s no way to make it better.”

So, what can someone do to really help a metastatic breast-cancer lifer?

“Offer a meal or two, offer babysitting, offer a night out where you don’t have to talk about cancer. And when you offer help, mean it! When you say you’re going to pray for me, actually do it. You learn who is full of hot air quickly,” Kitchen says with a laugh.

Making a donation to organizations that support metastatic breast-cancer research is another way to help, but make sure to do your research beforehand. Kitchen stresses the importance of knowing exactly where your money is going when you buy an item from a company that donates a percentage of its proceeds to any kind of breast-cancer research.

“Before you give a dollar of your money to anyone or buy something pink in a store, find out where your money is going. There are a lot of marketing machines out there who are making money off my disease,” Kitchen says.

Despite her lightning-fast rise to Internet fame and her newfound role in the metastatic breast-cancer community, Kitchen is exceedingly normal and down-to-earth.

“My kids have no idea. In my home, I’m still just Mom. They humble me quickly,” Kitchen says.

Most of us strive to create balance between the different facets of our lives—career, family, friends, hobbies—and Kitchen is no different, except that cancer is now one of those facets.

“I want to say I’m Mom first, but unless I continue to be the cancer fighter, I’ll lose the struggle of Mom,” Kitchen says. “It’s a continuous learning curve for me. I’m learning that it really should be a triangle. My marriage needs to be there along with cancer and my children.

“Parenting is by far the hardest thing I’ve ever done in my life, and you throw cancer in there, it’s like a cruel joke, and then mortality on top of that. The sandwich we’re making is a really crappy one. Although it sounds tacky, I try to compare myself to someone that has it worse than I do because there’s always a worse case than me. If you’re up and walking and alive, there’s always someone that has it worse than you. It’s all about gaining perspective on your own struggle.”

Describing herself as a planner by nature, Kitchen says breast cancer has forced her to slow down and take everything day by day. Most importantly, she tries every single day to make a memory that her kids will remember once she’s gone.

“Sometimes that memory is huge, like when we go to iFly [indoor skydiving]. That’s huge to them,” she says. “And sometimes, it’s little, like when I do the same thing every night when I tuck them into bed. I kiss them goodnight, and I say, ‘No matter what…’ and they respond, ‘Mommy loves me.’ It’s kind of like Pavlov’s dog and the ringing of the bell. I want it to be instinctual to them, so no matter who says that, their brain will go to me. So even if it’s my husband saying that to them, they’ll say, ‘Mommy loves me.’ It’s probably the selfish part of me that wants that, but…it still chokes me up. I should be used to it by now.

“I have these little patterns that I do every day, and cancer has blessed me with that. A lot of people take that for granted. They don’t realize that at the blink of an eye, life can end. Cancer has given me that glimpse. I can pause a little bit now and do those things. I don’t ever want to say I’m thankful for cancer, but it’s a double-edged sword.”

Watch Holley Kitchen’s video at youtu.be/QDQ0FjP7J-c.

Support Holley Kitchen’s Mission:

facebook.com/holleykitchencancerlifer

@holley_kitchen #lifer

 

Ten Things to Know About Metastatic Breast Cancer

• Metastatic breast cancer is treatable, but not curable. Treatment for metastatic breast cancer is lifelong and is focused on managing the progression of the disease and quality of life.
• Metastatic breast cancer is also known as Stage 4 breast cancer, a condition in which cancer cells spread to other parts of the body, most commonly the liver, lungs, brain and bones.
• About 155,000 Americans are currently living with metastatic breast cancer.
• Metastatic breast cancer results in about 40,000 deaths in the U.S. annually.
• Six to 10 percent of people are diagnosed with metastatic breast cancer initially.
• Twenty to 30 percent of people initially diagnosed with early stage breast cancer will be rediagnosed as metastatic/Stage 4.
• Metastatic breast cancer can arise months or years after a person completes Stage 1, 2 or 3 breast cancer.
• There are different sub-types of metastatic breast cancer, which can affect individual treatment plans.
• It’s possible for men and young people to be diagnosed with metastatic breast cancer.
• An estimated 2 to 5 percent of breast-cancer-research funding is spent on studying metastatic breast cancer.

Join the Conversation About Metastatic Breast Cancer and Breast Cancer With These Resources

American Cancer Society: cancer.org/cancer/breastcancer,
facebook.com/americancancersociety,
Twitter: @americancancer

breastcancer.org,
facebook.com/breastcancerorg,
Twitter: @breastcancerorg

Komen Austin: komenaustin.org,
facebook.com/komenaustin, 
Twitter: @komenaustin

MD Anderson Cancer Center: mdanderson.org,
facebook.com/mdanderson,
Twitter: @mdandersonnews

National Breast Cancer Foundation: nationalbreastcancer.org,
facebook.com/nationalbreastcancer, 
Twitter: @nbcf

National Cancer Institute: cancer.gov/types/breast,
facebook.com/cancer.gov,
Twitter: @thenci

National Comprehensive Cancer Network: nccn.org,
facebook.com/national.comprehensive.cancer.network,
Twitter: @nccnmeetings

The Breast Cancer Resource Center: bcrc.org,
facebook.com/bcrcoftexas,
Twitter: @bcrcoftexas

Wonders and Worries: wondersandworries.org,
facebook.com/wondersnworries,
Twitter: @wondersnworries

Young Survival Coalition: youngsurvival.org,
facebook.com/youngsurvivalcoalition,
Twitter: @yscbuzz 

 

Local Events

• Art Bra Austin: artbraaustin.org
• Komen Austin: komenaustin.org/austin-events
• Stiletto Stampede: stilettostampede.org
• Texas Mamma Jamma Ride: mammajammaride.org

---