Written By Janine E. Guglielmino, MA, Senior Director, Programs and Partnerships
On a rainy March day, Sue Peracchia, 52, sits in Living Beyond Breast Cancer’s library assembling information packets. Beside her is the journal she started on February 4, 2009, the date of her first chemotherapy treatment for metastatic breast cancer.
“My sister told me to always keep one happy thought in my mind,” Sue said. “So I write that at the top of every page.”
Tucked among the journal’s pages are family photos, newspaper clippings, prescriptions, emails to co-workers and questions for doctors. They represent a record of the events that transformed Sue’s life over the past year from one of blissful ignorance, to shock and sadness and, finally, to acceptance—and hope.
In June 2008, Sue developed a cough. Over the next several months, it grew worse.Victor, Sue’s husband, began nagging her to get it checked. At the hospital where she worked as a medical technologist, Sue’s colleagues expressed concern.
In December, Sue had her annual mammogram, which came back normal.
As Christmas approached, Sue grew weaker. Then, one morning, she couldn’t get out of bed. Victor took Sue to the emergency room, and the doctors gave her antibiotics. They also ordered a CAT scan, just in case. The results showed something awry in Sue’s lymph nodes.
Sue first suspected a major problem when her doctor called her at 8:30 at night. She insisted Sue get a bone scan and visit a lung specialist. Even though no doctor had suggested it, Sue told Victor, “I think I have cancer.”
Further tests confirmed Sue’s fears. The cancer was in her breast, lymph nodes, hips, skull, breastbone and lungs. Sue quickly made an appointment with a surgeon. The result: a diagnosis of stage IV breast cancer.
Sue had not had breast cancer before. Among her siblings—six of them girls—just one had faced the disease, a stage 0 diagnosis.
“When this happened to me, I sat and cried,” Sue said. “I was in shock. I didn’t have time to call anybody.”
To protect her privacy, Sue found an oncologist at a different hospital. He told Sue and Victor that medicine couldn’t cure her, but it could keep the cancer stable. Sue had her doubts.
“I remembered from years ago that cancer to the bones meant I was going to die. I thought I was being handed a death sentence,” Sue said.
Sue began treatment with paclitaxel, bevacizumab and zoledronic acid (Abraxane, Avastin and Zometa). She left her job. Family and friends came and went, bringing food, washing laundry and taking her to treatments. Then came the shock of losing her hair.
Born and bred in Philadelphia, Sue had always been bubbly and sociable. She loved playing the slots and going “down the shore” to listen to the seagulls or curl up with a romance novel. Now Sue more often found herself alone, scribbling questions in her journal for the doctor. She searched online for treatments. She cried. And for the first time in a long time, she prayed.
Sue’s cough improved. After several months, she received good news: a scan showing the cancer had shrunk. Her oncologist said she could stop chemotherapy and Avastin and switch to letrozole (Femara) and Zometa. Sue learned she could take this therapy as long as it worked, and she was likely to have other options once it stopped. Yet Victor had fears.
“He said, ‘I want my wife back,’” Sue remembered. “‘I just really want my wife back.’”
The Acceptance—and the Hope
A few weeks after starting chemotherapy, Sue attended a support group. The women sat in a circle and took turns sharing their stories. Most had early breast cancer.
After the session, the leader handed Sue a brochure for Living Beyond Breast Cancer’s Annual Conference for Women Living with Metastatic Breast Cancer. She suggested it might be helpful.
Sue decided to attend with a friend. The two watched as the room filled with women living with metastatic breast cancer. After her opening remarks, Elyse Spatz Caplan, MA, LBBC’s director of programs and partnerships, asked the women to stand by year of diagnosis. First were those diagnosed less than one year ago; then, two to three years; three to five years; and five to ten. Finally, those who had lived more than ten years rose to their feet.
“Seeing the women stand up gave me hope,” Sue said. “I stepped outside and called my husband. I said, ‘All these women are in the same boat as me. I can do this. I can fight this.’”
Building a Life Beyond Metastatic Breast Cancer
The conference was a turning point. Sue decided to volunteer for LBBC. Victor worried it would make Sue focus on cancer, but she insisted on “being a part of it.” Sue began attending events on LBBC’s behalf, talking to whomever she could about metastatic breast cancer. She and her friends made and sold jewelry, and donated the money to LBBC.
Soon, Sue found herself thinking less and less about breast cancer. She returned to work one day a week. She now volunteers for her high school alma mater and has stopped scoping out the Internet every day.
“I feel like I know what I want to know,” Sue said. “I have accepted what I have. I have always been an upbeat, positive person, but for a while I wasn’t that person. But now I’m back.”
Sue’s big blue eyes light up when she talks about her daughter’s wedding. Gina and Sue often volunteer together, and the two have set up a fundraising team for the annual Yoga Unites for Living Beyond Breast Cancer event.
Today, Sue leafs through her journal to a page where she had taped a cartoon; it shows a woman holding a “to-do list” that reads “1 – Bring on the chemo, 2 – Bring on the hormonal therapy, 3 – Bring on the grandchildren!” She found ways to juggle the demands of treatment with her daughter’s wedding, agreeing with her doctor to postpone a regular scan until after this milestone event. She wanted to focus her energies on that day.
“What matters to me now is my husband, my children and the family and friends around me,” Sue said. “I have made the decision not to allow cancer to consume my life.”