By age 37, Dara Marias, of Las Vegas, had lost her grandmother and mother to breast cancer. And she had her own ovaries and breasts removed when she learned that she too carried the BRCA gene for breast and ovarian cancer. Yet despite the devastation the disease has brought her, she is determined — with her daughter and father — to ensure their losses lead to less pain for other families.
For Marias, now 41, the motivation for her fight against breast cancer is clear: “I knew from the time my mom died that I wanted to do something that would carry on her spirit.”
When her 12-year-old daughter, Molly, said that she too wanted to do “something big and meaningful,” mother and daughter teamed up with Marias’s father to start a FORCE scholarship fund in her mother’s name, Brenda Caplan. FORCE (Facing Our Risk of Cancer Empowered) is a nonprofit organization in Tampa, Fla., that supports women with hereditary breast and ovarian cancer.
Marias’s father provided the fund’s first $10,000, and Marias and her daughter feed the fund by selling jewelry that celebrates those who’ve died from breast cancer. “Even though losing my nana made me very sad,” says Molly, “it makes me feel better to know that because of my project someone else might not have to lose someone close to them.”
Although fighting breast cancer isn’t the only way to recover from losing someone to the disease, it can help make sense of the loss, says psychologist Dr. Alyson Moadel, director of the Psychosocial Oncology Program at the Montefiore-Einstein Center for Cancer Care in New York City. Moadel knows this firsthand. She was 6 when her mother was diagnosed with breast cancer, 16 when she died. “It was really important for me to make meaning out of her death. I lost her, but now I can have a purpose that gives it higher meaning.”
Ken Levy, 53, of New York City, still struggles to find meaning in his wife’s death from inflammatory breast cancer in 2007. She had seemingly recovered from stage 1 invasive ductal carcinoma — despite an 18-month delay in its diagnosis. But almost five years later, in April 2007, she developed pain and swelling in her left arm. Although her physician reassured her that the cancer had not returned, she insisted on a biopsy in June that revealed stage 4 metastatic cancer. On Nov. 3, Levy’s wife, Sheila Hernandez, 49, a competitive runner and artist, died.
Levy has responded with a determination to spread the word about inflammatory breast cancer, a cancer so silently aggressive that by the time its symptoms — redness, dimpling, itching, pain, heaviness in the breast and enlarged lymph nodes — appear the cancer is usually well advanced. A former journalist, Levy is working with MD Anderson Cancer Center in Houston and the Inflammatory Breast Cancer Foundation in Milford, Mich., to educate himself so that he can disseminate information to journalists and even to doctors.
An entrepreneur, he has also developed a pink high-antioxidant chewing gum, adding information about the disease and his wife on the packaging. He plans to donate a portion of the earnings to MD Anderson in his wife’s name. Like Marias, Levy is clear about his motives: “Sheila was too beautiful a person to let her recede,” he says. “I took up these projects in her honor to spread the word about inflammatory breast cancer.”
In doing so, Levy in a sense continues his relationship with his wife. As Moadel notes, “People die, but relationships don’t.” Breast cancer is also a family disease, but it’s the person with cancer who gets the care, says Moadel. “The mother is often the caregiver, and when she gets sick, it creates an imbalance. The husband has to pick up the pieces, and he has no training.
That experience drove John W. Anderson, 50, a writer in Roanoke, Va., to write Stand By Her, a guide for men whose wives, sisters and mothers have breast cancer. He has also created a companion Web site, http://standbyher.org.
Anderson lost his mother to breast cancer when he was 28. And in January 2001 his wife was diagnosed with stage 2 breast cancer, and his sister was diagnosed in 2002. “I was in shock,” he says. “I thought, no way can this happen again. My personal experience was that when you get breast cancer you die.” The path was grueling for Anderson and his wife, their two young sons and their marriage. At one point, his wife was so weak she fell in the street. “I literally walked away from her and curled up and thought, how am I going to deal with this?” Anderson says. “I was redlining in terms of caregiving.”
Nine years later, his wife and sister are fine. “But in each experience, I just wandered through it,” he says, noting that he can count on one hand the number of times people asked him how he was doing during his wife’s illness. “There was no resource for guys. I thought I could write a book and then create a program that would help men — fathers, sons, brothers — be more involved in the treatment process.”
For Anderson, the book has done what a scholarship has done for Marias and an information campaign has done for Levy: “It’s given me a kind of closure. By helping other people, I finally feel there’s a positive ending.”