‘I want to live’: Women share realities of living with terminal breast cancer, raise money to eradicate the disease

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Imagine living every day knowing that the end is near. It could be this year or the next. Maybe death won’t come for a few years, but it will come. The diagnosis says it is so.

As Carol Smith puts it, she is living on borrowed time.

“I look awfully damn good for somebody with a terminal disease, don’t I,” Carol laughs.

She is surrounded by the support of women who face the same fate. Kate Watson lives in Avon with her husband and 5- and 7-year-old daughters.

“Most people look at me and they think, I have hair, I look good. I look healthy, but inside I’m not,” she said.

Gathered in the living room of Carol’s Solon home recently, six women shared stories of their day-to-day lives, the treatments, the dreaded scans  and the “scanxiety” that comes with them. This last year has been especially tough. Linda, Kate, Lindsey, Michelle, Carol and DeeDee lost five friends to this dreaded disease: stage 4 metastatic breast cancer.

They found each other through a Facebook group, called Cleveland Area Peer 2 Peer Metavivor Support Group. Kate joined a couple years ago.

“The two people that I met that introduced me to this group, a year later were no longer here,” she said.

These women struggle through the grief, and the day-to-day realities of living with a terminal disease, together, often finishing each other’s sentences.

“It’s like if you’re not…..”

“You don’t look sick.”

“Right! Exactly. Thank you.”

“I still have people that are like, you’re still battling that? Yes, Yes! Still battling it.”

“Everyday. Thank God! Thank God I’m still battling.”

Kate was 35 years old and 19 weeks pregnant when, out of nowhere, she found out her body was riddled with breast cancer.

“I had four spots on my spine, the lining of my lung, two spots on my pelvis in addition to the two tumors in my breast,” she said.

Carol thought she was in the clear. Chemotherapy and radiation rid her body of the small tumor she had six years ago.

“Then two years later, it was in my spine,” she said. “And now it’s also in my liver.”

For now, these women are tolerating their treatments: chemo infusions, medications, hormone therapy and regular body scans. They live under a constant cloud of worry and that has spurred them to action.

“We need research,” Carol said. “We need drugs, we need treatment options because this is not a managed chronic condition. This is a  terminal disease.”

According to Metavivor, a non-profit dedicated to funding metastatic breast cancer research, more than 200,000 Americans are diagnosed with breast cancer every year.

In cases of early stage cancers which are cured, many of those men and women face the very real possibility that the cancer will return, popping somewhere else in the body. And there isn’t a solid understanding of why.

These women have made it their goal to raise money for research that will eradicate stage IV breast cancer.

“We want research because if you can help me and people in my situation with stage 4 breast cancer, early stagers don’t have to worry about it coming back.”

Carol shares what they are all feeling, “I want to live. I want to see my kids graduate from college. I want to be a grandma, I want to do all those things that people do!”

For Kate and the other young moms: “I have to worry not only about being here for my kids  but how to plan for them when I’m not here. And that shouldn’t be on anybody’s plate.”

For more on METAvivor, click here. 

For more on the Play: CLE to Cure MBC event, click here. 

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