There is no right or wrong way to handle a diagnosis as serious as metastatic breast cancer. Every woman’s journey is her own. But thanks to ever-advancing new treatments and therapies, more women are indeed having a choice in how they live their lives. And these women are doing just that.
Painting Through a Prognosis
Meet Linda Johnson, 60, a former graphic services sales rep who was diagnosed 12 years ago
When Linda Johnson, now 60, was diagnosed with metastatic breast cancer 12 years ago, she just wanted to connect with other women who could relate to what she was going through. Eight years after her original stage 1 diagnosis, her breast cancer was now in her spine, hips, femurs, and lungs. What she didn’t realize was that she would become an outspoken patient advocate for those with MBC through a medium she was already passionate about: art.
It all happened serendipitously.
After being trained by the Metavivor Training Program, which teaches MBC patients how to start their own peer-to-peer support groups, and Johnson set up her own local group and then spent several years serving on the Susan G. Komen LA Metastatic Breast Cancer Conference Committee.
It was fulfilling work, but in 2016, Johnson, who lives in Glendora, CA, had an epiphany about her diagnosis and she wanted to translate those revelations into something visual. So began creating her own pieces of artwork to give meaning to everything she feels about the marginalization of women with MBC.
“We sometimes can look healthier than early stage patients. We may still have our hair, and with that normal appearance comes an assumption of good health that is hard to convince others is false,” says Johnson. “‘When will you be done with chemo?’ an acquaintance will ask; ‘Never, I'll be on it for the rest of my life,’ I say.”
One piece made from reclaimed and repurposed materials, called “Bottled Up/Message in a Bottle,” has 100 mostly pretty clear bottles stacked vertically in a circle about 6 feet high. "There is a sculptured bust of a woman at the top. One line of bottles is pink, starting out pretty at the bottom, then getting uglier and darker as it goes up," she says. "One bottle in this row has a skeleton on it, one contains a vial of my blood, and another one has a tiny ballerina from a birthday cake my mom made me when I was little. Another also has a message to Komen: ‘Help us,’” says Johnson.
This very personal piece of art became part of the inspiration for Art from Inside the Storm, an exhibit that was first displayed in 2017 and would soon include works from other MBC patients around the country. The goal was to give other MBC patients a way to share their feelings about their diagnosis, too. “It lets us feel that we have a voice and that this voice is recognized by others. We share feelings of fear and sadness and joy in a way that others may not be able to understand.” To recruit other creative women with MBC, Johnson turned to closed Facebook groups including "Art from Darkness” and "Metster's Creative Café.” She also relied on old-fashioned word of mouth. To date, the exhibit has been featured at the Los Angeles Susan G. Komen Race for a Cure and at multiple MBC conferences in Los Angeles, including one at UC Irvine last year.
“We all have this screaming inside,” says Johnson. “The art helps us get those feelings out into the world and calm ourselves in the process.” She also hopes she can encourage other patients, particularly those who don’t think of themselves as creative, to find the kind of peace she experiences when she’s immersed in an art project.
Recently, Johnson has been hard at work on a book that includes the permanent collection of works created by several women with MBC—these works include visual art, writing and poetry—along with interviews she conducted.
“I wanted to know how each woman felt when she was diagnosed and how the art makes her feel,” says Johnson of the book that will be available on the Komen LA website and Facebook page. “Most important, I want this art to be a bridge between the metastatic community and early-stage patients who don’t know what MBC is. Through the art pieces, we can help educate and bring awareness to a stage of breast cancer that has been hidden from view.”
Finding Perspective at Work
Meet Kelly Machovec, M.D., 42, a pediatric anesthesiologist who was diagnosed in 2017
For Kelly Machovec, M.D., a pediatric anesthesiologist at Duke University Hospital in Durham, NC, being diagnosed three years ago with metastatic breast cancer came as an even bigger-than-usual shock. Dr. Machovec not only had no major risk factors or family history, but she also had never had breast cancer before. In fact, the day before her mammogram and breast ultrasound to examine the lump she'd found in the shower, she had just done a 10-mile trail race with her husband.
“My husband and I were turning 40 so we decided to do one running race every month,” she says. “When I found out I had metastatic breast cancer, I had run my best half-marathon ever a few weeks before. I was completely shellshocked to learn that there was cancer in my spine.”
But it is her young patients, ultimately, who keep her feeling positive.
“I see what these children, who have major congenital heart deficits, go through when I’m taking care of them,” says Dr. Machovec, who is the mom of three daughters, ages 6, 8, and 10. “Some will spend six months to the first year of life in the hospital and they make it. One patient had a heart defect as well as brain cancer. He’s still alive. He’s 6 years old and doing great.”
“I look at them, but I take them with a grain of salt,” she says. “Again, I’ve seen this with my own practice. You see these kids and think that there’s no way they’re going to live—and then they do.”
Since her diagnosis, Dr. Machovec says she feels strong and that life hasn’t changed that much.
“Besides some joint pain and stiffness, I don’t look or feel that much different,” she says.
These days, she’s content working, spending time with her family, lifting weights, practicing yoga, reading, running and baking (she’s known for her decadent chocolate chip cookies).
Being a doctor helps her stay focused and maintain a clear attitude about her disease, she says.
“I think I have a positive attitude because of how I’ve chosen to look at it,” she says. “I never asked ‘why me’ because why not me? It’s biology and I understand biology and that things happen to people. You just have to accept it.”
She also says she feels very lucky.
“I have a job, I have a family and good friends who support me, and I have health insurance,” she says. “I can’t emphasize enough how important health insurance is and how that has eliminated the stress of worrying how to pay for the next MRI.”
Her biggest advice to other women with MBC: You need to trust your doctor.
“And, if you don’t trust that person, go to someone else,” she says. “That’s really important so you should always trust your instincts about this. You need to feel you’re being taken care of and take it from me, a doctor: I recommend that you like your doctor, too.”
Using Music to Connect
Meet Faith Walker, 42, a singer/songwriter who was diagnosed 12 years ago
Whenever Faith Walker is deep in thought working on a song, this professional songwriter forgets everything happening in her world. This is so important for Walker, who is on the daily rollercoaster that is MBC.
“When I’m writing the songs that really go deep into my experience, it’s a kind of therapy for me,” says Walker, who lives in Waterloo, Canada, and is the mom of three kids ages 22, 20 and 12. “I’m releasing my thoughts and emotions into the world, and I feel like I’m doing something positive with the tough times that I’ve been through.”
With her music, including her “Head in the Clouds” remix, the title track off her latest EP, Walker explores her cancer experience, which began with an initial diagnosis of stage two breast cancer when she was 26 years old. She then stayed in remission for eight years before her tumor markers started going up. She now has metastatic breast cancer in her lungs, bones, and liver.
“I just keep going—that’s all I can do,” she says. “I don’t know what my prognosis is, but I know I’m here for a reason.”
That reason quite assuredly is her music—and her kids.
“I’ve been a singer-songwriter since I was 14 years old,” she says. “I started writing music about my journey, what I’ve gone through and how I’ve stayed positive. That’s been healing for me.”
She hopes her music, which is available to download on YouTube, will inspire anyone who listens—even the ‘harder stuff’ she’s experienced.
“When people would ask me what I would do if my cancer came back, I always explained that it has never left—not since 2008 when I was first diagnosed with MBC,” she says. “Through my music, I share the vulnerable side of me. When we only share the positive things, people don’t see that MBC comes with highs and lows. It’s good for me to get that out there and share this with others who have this same disease or know someone who does.”
For Walker, social media (@faithwalkermusic) has definitely helped her meet other breast cancer thrivers.
“There are so many opportunities for me to connect with other women,” she says. “I love that this offers another way for me to inspire others.”
Ultimately, this artist has an important message for other women who have MBC.
“Please believe that you are not a statistic,” she says. “I want women to believe in the fact that you can surpass the odds. You can be that miracle and I hope over time we see more and more of that.”
As for Walker, she is looking forward to releasing her new video, continuing to write music and connecting with as many women as she can.
“I’m looking forward to continuing to share my story and hear from other women who can share their stories with me,” she says. “Sharing our stories helps me and I hope I can continue to be a huge outlet to support others.”