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CdA woman urges ‘mindful philanthropy’ regarding breast cancer

Coeur d’Alene resident Heather Caro, 34, told a TEDxSpokane audience recently that breast cancer “awareness” won’t find a cure. “If we are to begin to make gains against this disease, it will require a more mindful and intentional approach,” she said. (Kathy Plonka)
Coeur d’Alene resident Heather Caro, 34, told a TEDxSpokane audience recently that breast cancer “awareness” won’t find a cure. “If we are to begin to make gains against this disease, it will require a more mindful and intentional approach,” she said. (Kathy Plonka)

Breast cancer Orbit gum. Mike’s Hard Lemonade. Campbell’s soup. Swiffer 3-in-1 starter kits.

Breast cancer maximum-strength pepper spray. Nail polish. Socks and shoes. Rubber duckies, water bottles, tote bags, Barbie dolls.

Breast cancer fried chicken in a bucket. Breast cancer drill bits, painted pink by a fracking company.

Heather Caro feels a little nauseated, she said, every time “Pinktober” rolls around. This time, it’s not the chemo.

It’s that breast cancer has become what she and others call the “shopping disease,” with countless products – especially during Breast Cancer Awareness Month – adorned with breast-cancer pink ribbons, their sales sometimes doing little or nothing to benefit patients or research.

“It feels like blood money to me,” Caro said, “when I have friends that are dying of this disease, and it’s such a hideous thing to go through.”

When the 34-year-old Coeur d’Alene woman delivered a TEDxSpokane talk on “mindful philanthropy” last month at St. George’s School, her task was to connect her personal story as a young woman who had invasive breast cancer to the “big idea” that’s the hallmark of a TED talk.

The story started when Caro was 32, diagnosed with an aggressive tumor and three affected lymph nodes. A nurse who treated oncology patients, Caro had a 9-year-old daughter and a 5-year-old son.

Caro’s cancer treatment lasted a year. She underwent a bilateral mastectomy, chemotherapy and radiation. She said there were times when she wasn’t sure she’d survive the treatment. Too sick to work, she lost her job.

“I thought completing treatment would be my victory lap – but it was all I could do to crawl through the mud across that finish line,” she said in her talk.

The big idea: While “breast cancer awareness” sells, and marketers add pink ribbons to all manner of products, in many cases the products’ sale benefits no one but the marketers. “In fact,” Caro said, “products that provide a false or overinflated sense of contribution may be doing more harm than good.”

That leaves it to consumers, she said, to read the fine print (when it exists) on pink-ribbon products or events. How much, if any, of the money from a product’s sale benefits breast cancer research or patients? If dollars are earmarked for a nonprofit organization, how does the organization spend its money?

“Part of TED is it should be a little bit provocative,” said Michael Poutiatine, Caro’s speech-writing coach, who teaches leadership to graduate students at Gonzaga University.

It was the third TEDx event at St. George’s, the second “TEDxSpokane” event officially licensed through TED, an international organization that aims to spread ideas in the form of short speeches.

Not everyone has to agree with the big idea, but if the audience ends up thinking about it, “that’s the brilliant TED,” Poutiatine said.

Caro got a standing ovation.

The cause, and the calling to speak up, found her.

His wife wasn’t an advocate before she got cancer, said Chris Caro, 39, who manages Terra Sports, a bike shop in Coeur d’Alene.

“I don’t know what light switch was flipped, but she sure is driven now,” Chris Caro said.

Since her diagnosis, Heather Caro has become a Western states leader of the Young Survival Coalition for 19- to 40-year-olds with breast cancer. She’s launching a local support group through the coalition.

Over the summer, she traveled to Washington, D.C., to serve as a consumer advocate on a panel for the Department of Defense’s congressionally directed Breast Cancer Research Program. The panel decides which research proposals should receive federal funding.

She has been documenting her experience since her diagnosis on her blog, My Life, Distilled, which attracts thousands of readers a month.

“I think Heather works this hard because Heather wants to survive and see her kids grow up and have a life,” said her friend, Rebecca Schroeder. “And it’s not over for her. It’s not all wrapped up in pink. It’s something that she lives with every day.”

Schroeder lives across the street from the Caros. She cooked for Heather during her treatment. She bought her a juicer. She sat with her when she was sick and checked on her when Chris was at work.

During her treatment, in October 2012, Caro and a photographer friend went into the woods to document “the middle” of cancer.

Their intention was to put some more-realistic images into the world, augmenting the photos presented to cancer patients of happy-looking, hat-wearing models on brochures with titles like “Lymphoma and You.”

They made photos of Caro curled up, naked and thin, her head bald, one leg swollen with lymphatic fluid her body couldn’t process, a mastectomy scar curling under her arm.

“That is what I remember … the harsh reality,” Schroeder said. “There was nothing pink and pretty about the process, and it’s not over, even now. She still has so many side effects from the chemotherapy, and she has organ damage. She has so many things that she deals with now, now that she’s a, quote, survivor.”

For Caro, Pinktober represents an oversimplification.

She knows that for some, pink is powerful. If it provides a rallying cry or offers strength, “then it certainly has its place,” she told the TEDxSpokane crowd.

But there’s little that’s pink or pretty about surgical site infections or radiation burns or getting so skinny from chemotherapy – at her thinnest, 5-foot-2 Caro weighed less than 90 pounds – that you can count your ribs.

And the word “survivor” fails to encompass osteoporosis and early menopause and losing your job and the constant feeling of being, as Caro said in an interview after her talk, in “your own personal Vietnam in your body” – always on alert. Is that ache you feel because you slept in a bad position, or has cancer invaded your bones?

You’re not doing cancer survivorship wrong if you have those feelings, she said. “Anybody would have a hard time with this.”

Caro, now working as a research nurse who coordinates trials at Kootenai Heart Clinics, joins a chorus of voices expressing concerns about what she called “pinkwashing.”

KFC took flak for its Buckets for the Cure campaign; the chain gave 50 cents for each bucket sold to Susan G. Komen for the Cure, but critics noted the health implications of fatty foods. And the Komen organization has drawn fire for its partnerships with companies including the fracking-equipment manufacturer, which donated $100,000 to the organization; critics noted that fracking may create cancer-causing pollution.

Caro is cancer-free, for now, as far as she knows. When cancer comes back, though, it’s often metastatic, meaning it spreads from the part of the body where it started. There’s no cure for metastatic cancer.

“I have to believe that science is going to be able to stay one step ahead,” Caro said. “We have to keep moving forward. That’s why it is so frustrating to me that there’s all this distraction.”

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