A woman is riddled with routine questions from the minute she is diagnosed with breast cancer: Should I get a second opinion? Where should I be treated? What is my best treatment option? She’s burdened with additional, emotional questions: How will I get through this horrible, horrifying experience? Will I get through this horrible, horrifying experience?
After the preliminary decisions are made and the subsequent questions are addressed, two uncertainties remain: Have I earned the title “survivor”? And what do I do with my life if I have?
who are survivors?
The American Cancer Society considers a cancer survivor to be “anyone who defines himself or herself this way, from the time of diagnosis throughout the balance of his or her life.” But “survivor” is a title women don’t immediately embrace. For breast cancer patients, it comes, of course, with a high price tag. Women give their breasts to get the title, their blood, their guts…and they don’t necessarily feel they’ve earned it until after they’ve survived their treatment. But then…they should wear the survivor badge with pride and forge ahead because they are heroines.
News stories about the heroines of breast cancer are often sensational: 68-year-old breast cancer survivor climbs Mt. Fuji, three-time breast cancer survivor finishes 82nd marathon, nurse and breast cancer survivor rides cross county with Lance Armstrong. And while surely there are real survivors out there who climb Mount Everest or ride their bicycles across the United States—typically women who had the spirit or desire to take on such physical challenges way before they were diagnosed with the disease—those stories are mythical to most survivors.
“Those kind of people are rare and wonderful,” says Fairfielder Terry Kais, diagnosed with both ductal carcinoma in-situ (DCIS) and Stage I invasive ductal carcinoma (IDC) in 2004 at the age of 39. “Wonderful. But they are not real.”
For most women, the physical challenges of recovery are enough, and their true desire is to live a normal life. A normal life…or the life they were living before they were diagnosed with breast cancer.
what is normal?
To one woman, “normal” might mean driving her kids to and from school each day, helping them with their homework, and cheering from the sidelines at their soccer games. To another, it might mean watching her children graduate from high school, head off to college, and get married. To another, it might mean going out to dinner with her husband, taking fabulous vacations, and quilting or reading or gardening.
For all survivors, it seems, a normal life means spending quality time with loved ones. Lots and lots of quality time. That’s what survivors want out of living.
And while it’s normal on the surface, it’s a new normal, one burdened with an underlying fear of recurrence. A survivor can be successfully treated and deemed cancer free, but she never knows—nobody ever knows—if the disease is going to recur. And the thought that it could come back permeates her soul, resides in her heart, and lingers in her mind every single day.
 Terry Kais Photos By: Kristin Burke/Peter Baker Studios |
“Sometimes I wish I could go back and just remember what it was like,” says Kais. “To be here and not have this underlying fear…is it going to come back?”
If breast cancer comes back, a woman’s chances for true survival drop. By the end of 2007, the American Cancer Society predicts 490 individuals with breast cancer in the State of Connecticut will die. A recurrence this year begs the question…will I be one of those 490? It takes a heroine to live any type of “normal” life with that debilitating fear.
how can I help others live with the new normal?
Some women go beyond just trying to live a normal life. They take survivorship a step further and live the balance of their lives helping other survivors. Fairfielder Joyce Flynn was diagnosed with Stage 1 IDC in 1999 at the age of 59. Flynn admits that much of her life now still revolves around breast cancer. “It is something that we are eating, drinking, we are breathing. It doesn’t dominate my life, but it is completely part of me.”
Today Flynn is involved in Fairfield’s American Cancer Society Relay for Life (and has been since its inception), she’s an “on call peer counselor” for the Y-Me National Breast Cancer Organization, and she has attended the St. Vincent’s support group twice a month for the last eight years. “I go for that one person who walks through the door that needs to have questions answered by someone who has walked the walk.”
Terry Kais agrees: “I do like talking to people who are going through it,” says Kais, “and letting them know, hey, you are not alone.”
Unfortunately, a newly diagnosed woman will almost certainly feel alone. Many people keep their breast cancer diagnosis a secret because they don’t want the world to know they have cancer, they don’t want people’s perceptions of them to change, or they don’t want their new illness to define them.
“I knew so many people in the community,” says 63-year-old Susan Santangelo, former Fairfield resident, about her initial decision to keep her 1999 DCIS diagnosis a secret. “I didn’t want people talking about me.” When she began to share what she was going through, however, people with similar experiences came out of the woodwork and suddenly a support group existed.
According to Santangelo, it’s like you join a sisterhood; a secret club that you didn’t know existed until you’re an instant initiate. The shared experience of survivors makes them feel like kin to one another.
“We all have moments when we’re a bit…shook. It could be that you have to go back for a check up, or you read something in the paper that scares the living daylights out of you. Or a friend gets diagnosed and it brings back everything that you went through. It just sets you back for a while and the only person who understands is another survivor.”
After Santangelo’s treatment was over, she started a non-profit organization called the Breast Cancer Survival Center. The center provides post-treatment support for survivors, a need that was grossly overlooked in the state before its inception. At first, the center just served Fairfield County residents, but today its reach is actually statewide.
how can I help someone who is hurting?
 Maureen Lutz and daughter Kristen Fernandez Photos By: Kristin Burke/Peter Baker Studios |
“For me, the surgery was physically overwhelming,” says Lutz. “I was really incapacitated.” Mentally and physically unprepared for her surgery, Lutz admittedly packed all wrong for the hospital.
So, that same year, Lutz began freely distributing reusable canvas totes filled with practical guidance and essential supplies called “The Necessities Bag” to women about to undergo a mastectomy. The bag contains information, plus a pad and pen to write notes, personal comfort and hygiene items (like handmade pillows and oversized cotton T-shirts), a hospital survival kit (with lip balm, tissues, candies, and a water bottle), and wound care supplies for homecoming.
Thanks to generous donations from local individuals and organizations, “The Necessities Bag” is now being given out statewide and in Westchester and Nassau Counties in New York. Women as far away as the West Coast are contacting Lutz to get bags in the hands of women in California and British Columbia.
“Everyone wants to see the end to breast cancer…and as much money as we throw into that pot for research…we are still losing our breasts,” says Lutz. “While we are looking for that cure, let’s take care of the women who can’t wait.”
Neither Santangelo nor Lutz spent her childhood dreaming of the day she would start a non-profit business. But they used the skills they had acquired in life and put them to very good use.
how can I help find a cure?
Something similar happened to Carolyn Deal, President and COO of William Raveis Real Estate and Home Services, and a Trumbull resident. Deal was diagnosed in 1996 at the age of 53 with Stage II IDC. Now she spearheads a corporate initiative to raise money for breast cancer research, the William Raveis Breast Cancer Research Fund, part of the Fairfield-based William Raveis Charitable Family Trust. To date, says Deal, “we’ve raised over $700,000 and we’ve donated over half a million dollars.”
The Breast Cancer Alliance in Greenwich and the Comprehensive Cancer Center at the UConn Health Center are two beneficiaries of the firm’s efforts. “We are a company that is 80 to 85 percent women, and breast cancer is something that strongly affects women and women’s families,” says Deal. “Plus, Connecticut has one of the highest rates of breast cancer in the country.”
Carol Frattaroli, at the Wilton office of the American Cancer Society (ACS), confirmed that in 2001, Connecticut did have the second highest incidence of invasive breast cancer in the country. Though the death rates are declining, by the end of 2007, the ACS predicts 2,510 new cases of breast cancer will occur in Connecticut.
 Joyce Flynn and grandson Liam Photos By: Kristin Burke/Peter Baker Studios |
The high incidence of breast cancer in Connecticut is one of the reasons Weston resident Susan Davis started volunteering for the Connecticut Breast Cancer Coalition/Foundation. “I got involved because I felt very strongly that we had to have money for research,” says Davis, diagnosed in 1999 with Stage IV metastatic breast cancer at the age of 46. “We have a very active advocacy community and a state where people listen to us. We’ve had some good legislators.”
The Connecticut Breast Cancer Coalition/Foundation was instrumental in getting former Governor Rowland to sign into law a bill that requires insurance companies cover the cost of a wig for oncology patients. They’ve also raised money for research, money that they’ve given directly to Hartford Hospital.
who are the heroines?
While not always defined as a heroine, a breast cancer survivor is just that. She doesn’t have to climb mountains to claim that title. She is, by simply living a “normal” life, courageous beyond belief.
“Women who live with cancer, who sit and watch the school play, who get up in the morning, go to the supermarket, buy peanut butter, make sandwiches, and put them in bags for their children,” says Davis, a survivor who lives with chronic breast cancer—a cancer that will never be cured, a cancer that is undeniably fatal—“they are the real heroes.”