They call themselves "lifers" instead of "survivors." For these young women with stage 4 metastatic breast cancer, the disease will never recede in the rearview mirror. They live in a world of treatments and tests, symptoms and side effects, wondering what the next scan will show. But they forge ahead as mothers of small children, as family and community members and as part of a close-knit group offering mutual support in their shared situation.
Renee Sendelbach, 37, a mother, author and artist in Austin, Texas, just had her chemo. She's tired and has a headache. Yet she sounds upbeat and ready to go about her day. Sendelbach has learned how to pace herself and prioritize; to expend her energy on what's important. Like greeting her 8-year-old son when he walks through the door after school and helping him with his homework.
Her type of breast cancer is known as triple negative breast cancer. In March 2011, Sendelbach learned it had spread to her lungs, bones and lymph nodes. Despite undergoing chemotherapy and enrolling in a new-drug trial, within months she experienced new, ominous symptoms. An MRI scan revealed a mass in her brain. Since then, she's undergone treatments including radiation and three brain surgeries.
"When we heard I was stage 4, most people thought I wouldn't be around for more than two, two-and-a-half years," Sendelbach says, because of the advanced stage and type of breast cancer she had. "I told everybody I did not care what the stats said, because I am not a stat. I am my own person, and that wasn't going to be me. That has been my stubborn philosophy my whole life."
Life is more normal than people might expect, "up to a point," Sendelbach says. "As women with cancer and kids, we still have to do what needs to be done. My husband is fantastic, and so are all my friends. We are still moms; we are still wives."
Still, she points out, most other young mothers don't have calendars filled with oncology visits or dates for the latest round of chemo. "Or maybe you have bone scans or CT's," she says. "I always have an appointment or two that deals with cancer. Every week."
Of funding invested in breast cancer research from 2000 to 2013, only about 7 percent was dedicated to research focused on stage 4 breast cancer, according to an MBC Alliance report issued in 2014. As for women with stage 4 breast cancer, "It sounds like them raising their voice, sharing their story -- I think this type of thing is truly needed to shine more of a spotlight on metastatic breast cancer."