OH, THOSE BREAST FRIENDS
Instead of letting their cancer get them down, these remarkable women have turned life right-side up.
At 37, nurse educator and happily married mother of two Jacqui Bryan, BA, RN, MS, was diagnosed with Infiltrating Ductal Carcinoma. Simply put, on June 20, 2003, Jacqui Bryan was told she had breast cancer.
Three months later, in September 2003, after a double mastectomy and having started chemotherapy, Jacqui began organizing a group of women ranging in age from their thirties to their fifties—and all experienced in fighting breast cancer—for monthly meetings of Breast Friends, an amazing support group based near Portsmouth, New Hampshire, that has continued to meet to offer community support in person and via email. It has grown to include more than 60 women, some as far away as Iceland. In addition to pleasurable activities such as kayaking, African drum dancing and “Days of Beauty” trips to the spa, the group has raised tens of thousands of dollars for breast cancer research and treatment. Several of the women even have started their own creative and entrepreneurial ventures for improving the quality of life for breast cancer survivors and their family members. It is, says Jacqui, “an incredible lifeline for many women,” not forgetting to stress that Breast Friends is “the most exclusive club you never want to belong to.”
Showing Battle Scars
On November 5, 2005, about 14 Breast Friends members meet at Jacqui Bryan’s house in Rye, New Hampshire. They are there to connect with each other and to share stories of how the group energized their courage to meet the challenges breast cancer introduced to each one’s life. Elisa Fraser, 42, whose short brown hair falls into the group’s style category of the ‘Breast Cancer Cut,’ reminisces with Jacqui about when they met two years earlier and launched Breast Friends.
The two women used their different strengths in facing similar treatments. Jacqui had made it through surgery and with tremendous fear of poisoning her meticulously well-nourished athletic body, was starting chemo. A nurse educator, she always told others how to eat right, exercise and stay fit. Elisa, diagnosed less than a month after Jacqui, had done chemo and was very afraid of the surgery she was about to undergo.
Jacqui (to Elisa): You saved my life.
A voice from the group: Where is the breast cancer Kleenex box?
Jacqui: You told me how to get through chemotherapy.
Elisa: Chemo didn’t bother me. I did not want to do the surgery and when we met you said, “Do you want to see it?” Jacqui pulled up her shirt that day and showed me “the most popular breasts in town!” (The rest of the group laughs.) I saw her breasts and the scars of surgery; Jacqui saw my head, the loss of my hair, and the scars of chemotherapy. We developed such a strong connection, sometimes we can tell what the other one is thinking.
Elisa and Jacqui went for radiation treatments with the same doctor on the same days and passed messages to each other through the folks at the treatment center, maintaining anonymity in accordance with HIPAA rules. One would go at 9:15 a.m. and ask the staff to “tell 11:15 that 9:15 says ‘Hi.’”
Finding Meaning and Passing on Gifts
Michelle (33, with long brown hair): I had to get through it. I am a single mother and I had to be there for my daughter. I was never scared or thought I might die. I chose to do chemo even though I did not need it. I was never sick. The bigger question for me is: What life lessons do I need to learn from this experience? These people are the most dynamic, incredible, kick-ass women! I am honored to have found them. It came as a revelation that I would be here as a motivation for others. I am proud of the things we have done as a group.
(To Jacqui) You gave me hope.
Jacqui: After a while, you get so many gifts from others you want to start to give back.
Sisterhood of the Traveling Scarf
Elisa told Marcye about Breast Friends eight years after Marcye was diagnosed. Marcy’s doctor used to refer people to Marcye for “lay counseling,” but when Elisa contacted her there was a role reversal. By the end of the first time they met, Elisa had given Marcye a massage and invited her to a Breast Friends meeting.
Marcye: We were familiar with each other but did not know each other. I offered to show her my ‘lucky scarf.’ It is the one I wore during my treatments and I told myself that if I am lucky enough to still be around afterwards, then it’s a lucky scarf. I lent it to Laural and she passed it to Elisa. Elisa gave it to Pauli.
Elisa (who wore the scarf when she coached her 11-year-old daughter’s field-hockey team): My daughter wanted to play field hockey and I said, “I’ll coach your team.” Sixty-two girls showed up and I was wearing a bandanna, as I was still going through chemo. I know my daughter was a little nervous about how the other girls would react to seeing me. At the end of the first day, my daughter said, “Mommy, everyone feels you are so brave and we all would like you to wear the bandanna every time you coach the team.” After that day, all the girls wore bandannas for every game. They even got approval from the school to wear their bandannas to school on the day of my surgery.
Marcye found comfort and strength at her first Breast Friends meeting when she met Cynthia who is 11 “years out”—11 years cancer free. Marcye and Cynthia are also the only ones in the group to have received stem-cell transplants.
Cynthia: I remember the look on your face when I told you how many years out I was.
Marcye: I needed to see that, I had a golf-ball–sized tumor in my breast. It was achy and sore and was getting bigger. My doctor referred me to a surgeon who looked at me and, maybe because I was 35, thought it was benign. How many have heard that before?
Five women raised their hands. Marcye reported that her doctors found 29 positive lymph nodes after her mastectomy.
Jacqui: Marcye has the record of the group.
Marcye: I had to do everything I could to make sure I would be around for my kids. I did not want to later say, “If only I had done more.”
Marcye told how she was in an air-locked treatment room for one month during the stem-cell transplants and talked about how hard it was to be unable to see her family. Her husband lost 30 pounds during her treatments. Whenever Marcye tells the group how many years out she has, the group claps for her, and she bows to Cynthia.
Marcye: It reaffirms my own life to talk with this group.
From Surviving to Thriving
Marcye changed careers soon after battling cancer. She had been a waitress for many years and after treatment she knew she could no longer do that. With creative talent she had kept pent up most of her adult life, she quit her job and started an interior-design business. Like Marcye, many of the women in this group felt a sense of urgency after being diagnosed and found they could no longer put off dreams they had harbored.
Dana: I have no time to waste now on unpleasant jobs and unpleasant people.
Jacqui: Because of the age of most of the women, we are not at an age when we would expect to face [death].
Cynthia (who also made a major career change as a result of battling breast cancer): I was 40 years old. I was mad. I said, “I’m going to live, give me the best.”
Cynthia ran a successful eating-disorders clinic for many years. After treatment, she wanted a better balance and sold her business. In 2002, she started Betty J. Borry Breast Cancer Retreats, a nonprofit organization that provides adventure-based retreats for women of all ages at all stages of breast cancer. The retreats’ ropes courses, hiking, drumming, yoga and art therapy allow women to move beyond surviving to thriving.
More recently, in June 2005, Cynthia planned Bosom Buddies, a performance that raised money for Betty J. Borry Breast Cancer Retreats. She attended a Breast Friends meeting in order to raise money for Bosom Buddies, and now continues to attend meetings for her own emotional well-being.
The Secret Drawer
Like many Breast Friends members, 41-year-old Liz, a mother of two daughters, experienced a sense of ambivalence about joining. It meant opening the secret drawer. Liz was cancer free for three years and met Breast Friends members when she was training for the Pan Massachusetts Challenge, a biking fund-raiser for the Dana-Farber Cancer Institute.
Liz: I wanted to forget about my cancer and move on. It was hard to bring it up again.
Marcye: We all have the secret drawer with the wig or scarf and our journal. I see my drawer and I think, Do I want to open it? I look at it and I feel sick. I feel the chemo all over again. But I can’t get rid of it.
Elisa: I can’t get rid of my clothes, either. Maybe I’m superstitious. I’m afraid if I do, it will bring me bad luck.
When your life is getting back to normal it’s hard to talk about it again. It’s hard to open the secret drawer.
In December 2003, Mo heard about Breast Friends. At the time, she said she was too busy to join and did not think she needed a support group. Mo, a 50-year-old with two teenaged daughters, had made a lot of changes in her life after her diagnosis; she learned to play tennis and to swim the butterfly stroke. She also started MoWhere in Maine, a business that makes fleece socks and mittens. Every item the company sells carries the message: “Mo is a breast cancer survivor and credits her survival to the good Lord above and early detection. We hope every time you wear one of our comfy items it will remind you of how early detection can save your life or someone you love.”
Mo: I can’t have my daughter thinking she’ll get this disease. My daughter says, “My mommy helps eradicate this disease.” I change people’s lives.
Jacqui: Mo gives everyone socks when they join Breast Friends. We all have warmer feet.
Elisa: Her socks helped me sleep.
Managing It All
Dana, 50 years old and the mother of one daughter, works at the Haverhill, Massachusetts, radio station 92.5, the River. She was diagnosed in January 2004 and joined Breast Friends the following November.
Dana: I worked all through my treatments. I am on the radio and have a demanding job. I couldn’t find a support group that would meet my needs. Ones at the hospital usually met at 10 a.m. or were very depressing….I had a million questions going through treatment. Everyone was wonderful in [this] group. We talk about all kinds of issues. I remember my first meeting. I had ten questions that were answered in the first five minutes…and then someone talked about vaginal dryness and we all laughed. I have even mentioned the group on my radio show.
Jacqui: We all listen to her show.
Marcye: The support group is where we tell our real feelings.
Elisa: We e-mail whenever someone goes for a treatment appointment; we all fire back when we hear news. This is a really strong group.
Redefining Stage 4 and Starting a Group for Children
Of all the members, Cresentia True, has had to deal with the biggest challenges. Cresentia joined Breast Friends several months ago. She was in stage four, the point at which breast cancer has spread beyond the breast, underarm and internal mammary lymph nodes. She has had five recurrences of the disease over the last six years and is still on clinical trials.
Cresentia has two teenaged daughters who have been with her and involved in her care. They have established what they call “cancer-free zones,” so if anyone doesn’t want to talk about cancer, that person pulls out her cancer-free card and everyone understands she doesn’t want to talk about it.
Because of what Cresentia and her daughters have gone through as a family, Cresentia started On-Belay, a program for children ages 10 to 18 who have faced or are facing a parent’s or other loved one’s diagnosis of cancer or other life-changing illness.
Cresentia: I was moved by what others said when I joined the group, but I was shocked at being the only one with stage four of the disease. I thought, That’s cool, but why me? Then I thought, Why not me?
Everyone has a lot in life, and it’s what you build that matters. Sometimes that means tearing down and rebuilding in a new way. I redefined stage four. It is so fulfilling to meet people here. We are all in different stages. We all have breast cancer; we have the same fears.
Jacqui: She handles it the way it should be handled; it’s not a death sentence.
Cresentia: It’s a leap of faith to be here, like jumping off a cliff.
Kathy: I still feel mine could come back.
Jacqui: I don’t, but maybe that’s why I cry when I see my doctor. I sought counseling.
Marcye: We all have brushes with death.
Katie: I was talking with some friends who dealt with cancer and we were thinking of starting a rock group called the Young and the Breastless, and then one of them died in a car crash. It goes to show how you worry so much about one thing and then something happens that you don’t expect.
Cresentia: It’s the breast cancer lens; it filters everything you see. Are you spiritual?
Kathy: At night, I thank God.
Cresentia (to Kathy): The light is here. Come bask in the light.
Jacqui and Dana (to Cresentia): You have taught us so much.
Cresentia: I am scared all the time. Every time I get a cramp, I am sure it’s the cancer exploding. I am not at peace, but I have to show perseverance to my daughters.
My kids cut my hair and we celebrated by buying earrings together. My daughters watched my radiation. I never got a wig but I found some beautiful hats. When I got the flu and had a really high temperature, my younger daughter contacted our neighbor for help in getting me to the hospital. After I came home, she said to me, “It’s so hard watching you be sick. We have had to take you to the hospital five times in the last year, always at night. Sometimes I am afraid to come home. I know this makes me different. I need to be a 12-year-old. I need to see my friends.”
We needed to control the cancer and not let it control the family. Don’t fight the cancer; you can’t win. Fight for quality of life. It puts you in the driver’s seat. I have gained clarity, courage and commitment.