October is Month
By Jessica Rush
As mothers, it is in our nature to be protectors – to strive to keep our children safe and to protect them from the harsh realities of the world. But what happens when one of the harshest of realities strikes within our own family? How does a woman tell her children that she has cancer? And once families know, how do they successfully cope?
Diane* is a wife, career woman and mother of two young children who hoped never to have to tackle these difficult questions. But a few months ago, after having her annual mammogram, the 45-year-old received news that, in an instant, changed her life and that of her family’s. She became one of the nearly 217,000 women that the American Cancer Society estimates will be diagnosed with breast cancer this year.
Invasive breast cancer is categorized in stages I through IV. Stages I and II are considered “early stages” and generally refer to smaller tumors that have not yet spread to other parts of the body. Diane is fortunate that her malignancy was detected extremely early, at what is called Stage 0. Hers is a non-invasive malignant breast tumor, ductal carcinoma in situ (DCIS) that is made up of abnormal cells in the lining of a duct. The abnormal cells have not spread beyond the duct and have not invaded the surrounding breast tissue.
This is the best possible scenario for Diane, according to the American Cancer Society, whose research indicates that when breast cancer is confined to the breast, the female survival rate is close to 100 percent. Still, the past few months have been extremely challenging for Diane and those who love her.
Preparing the Family
At first, Diane shared the news with only her husband and a few close family members and friends, and she admits to “downplaying” the situation when telling others. But she knew that to win her battle, she must be as informed as possible. Diane set out to learn all she could about her condition, her options, and the medical, physical, emotional and social implications that breast cancer would have on her and her family.
That kind of research helped her make important decisions regarding her condition and treatment, she says. And some creative thinking helped her prepare her pre-school age children for the surgery, brief hospitalization and six weeks of radiation therapy that would ensue.
Diane and her husband feel strongly that active preparation and transitioning can help children cope with new and stressful situations. When both of their children underwent minor outpatient procedures to correct a common childhood infection, the family prepared by reading books together that dealt with illness and hospitalization. The children selected new pajamas to take to the hospital, and a special movie to watch and ice cream to eat upon returning home. They made a “Going to the Hospital” book, using photos and drawings to document their day step-by-step. All of these activities helped the children cope with feelings of fear and uncertainty, says Diane.
When it came time to tell the children about her own illness, Diane drew comparisons between their experience and her own. She chose not to use the word “cancer” with them, for fear of the reaction the children would get if they, in turn, used that word with others.
“I compared my illness to theirs, calling it ‘a little infection in my chest,’” she recalls. “I told them that to get better, I would be going to the doctor and hospital a lot and taking medicine that might make me tired. They had plenty of questions, but I tried to answer them as honestly and as simply as possible.”
When the children asked if Diane’s surgery was going to hurt, she told them it would hurt a little and that they would have to be gentle when playing and hugging. She explained that she might be more tired than usual and asked them to try to understand if she did not feel up to as many activities for a while.
Her daughters asked Diane to make a “Mommy Goes to the Hospital” book similar to the one she had done for their hospital visit, with photos showing check-in, doctors, nurses, friends and recovering at home. Dianne admits that taking photos that day made the experience less stressful for her too, and more of a day about caring and support. The little book is now loving reminder of all those who helped Diane and her family.
Building a Support System
Overall, Diane feels that she and her family are coping well and that her efforts have helped minimize any negative impact her illness has had on the children. She credits family members, friends and neighbors who have been kind and supportive, bringing the family home-cooked meals, sending cards and flowers, and helping care for the children when needed. Her daughters have helped her with thank-you cards by adding their signatures, drawings and stickers. Diane feels that her children are learning wonderful life lessons about the value and importance of people helping people.
“Having the support of friends and family is a blessing,” she says, acknowledging that she is usually pretty independent and unaccustomed to relying on others for help. “For me, one of the positives of having cancer has been learning how to receive help and support.”
This is music to the ears of Betty Qualls, the president and executive director of Cancer Counseling Inc, a nonprofit organization in Houston that helps cancer patients, their families and friends cope with the emotional effects of cancer on their lives. Since 1982, Cancer Counseling’s staff, which includes local psychiatrists, psychologists and licensed professional therapists and social workers, has provided free individual, family and group therapy, as well as in-home therapy, to those affected by cancer.
“Cancer is an accepted epidemic in our society,” says Qualls. “But thanks to medical advances, people are overcoming it and living longer, and that makes the need for emotional therapy even greater. Even short-term therapy can significantly change a person’s direction for the better, and it can help guide families through this journey.”
A friend, who is a breast cancer survivor, encouraged Diane to take advantage of Cancer Counseling’s services, explaining that while it is important to have the support of family and friends, it is equally important to have the support of other women who are facing the same challenge.
“There are women in my support group who are going through what I’m going through now, and there are those who have survived it,” explains Diane. “They’ve helped me to see that you can move forward and live your life, and I get great comfort from them.”
Amelia, a 50-year-old woman diagnosed with breast cancer in January, agrees wholeheartedly. Although she admits that she was initially opposed to the idea of attending a support group, she’s grateful that a friend helped change her mind. By meeting and listening to the other women, Amelia says she has learned to release suppressed emotions and can now communicate better, not only with her family, but also with doctors, her insurance company and others involved in her care.
Learning to Ask for – and Accept – Help
Unlike Diane, whose children are pre-schoolers, Amelia’s children are adults with families of their own, and they live in other cities. Like Diane, she too found it hard to receive help, and when talking to her children about her condition, she would often minimize her feelings in the hopes of sparing them from worry. Amelia declined help from her children, who wanted travel to Houston to be with her for her surgery, insisting instead that they stay home and not disrupt their family’s schedules.
“Inside, I was scared and I felt alone, but I also felt that I had to keep control for the kids’ sakes,” she remembers. “I was determined not to be a burden. I had to stay in control.”
Amelia’s reaction is typical of many women faced with cancer, says Deb Hardee, MA, LPC, a psychotherapist with Cancer Counseling, Inc. “As mothers and wives, women put everybody’s needs before our own,” explains Hardee. “It is in our nature to be that way and to want to maintain a calm and controlled environment for our families.”
But the reality is that when women have cancer, they lose control of many aspects of their lives, and accepting this is one of the biggest challenges to overcome, says Hardee, who stresses that emotional counseling can help women manage these feelings and regain some sense of control. Amelia’s daughter, Angela, says she has noticed a change in her mother since she began attending her support group.
“When I found out about Mom’s cancer, I wanted to be there for her. I needed to be there for her. But she is very independent, and she wouldn’t let me,” Angela says. “Now she’s starting to open up to me more, and she lets me know how she’s doing. I still worry about her, but we have some good heart-to-heart talks and that really helps us both.”
Their family has faced cancer before – Amelia’s mother, aunt and cousin succumbed to the disease – and Angela admits to being concerned about her own cancer risk and that of her three daughters, who are now ages 7-14. When her daughters ask how and why their grandmother got cancer, Anna finds herself relying on the family’s faith for answers.
“I’ve told the children that this is God’s will, and that I believe it may be His way of making us stronger and bringing us closer together as a family,” she says. “They know that it’s OK to ask questions, and it’s OK to be sad sometimes. But we try to keep things positive and reassure them that everything is going to be fine.”
Staying Connected with Family
Staying positive, strengthening family ties and relying on faith for answers are ideals shared by Susan Rafte, a long-term breast cancer survivor and project director for the Houston-based Pink Ribbons Project – Dancers in Motion Against Breast Cancer. It’s the first dance organization created to promote awareness about breast cancer and to raise funds for breast cancer advocacy, education and research.
Rafte learned that she had breast cancer in 1994 at the age of 30. Married with an infant daughter, she relied heavily on her sister, Jane Weiner, husband Alan, and other family members and friends to care for and maintain a sense of normalcy for her daughter while Rafte underwent rounds of chemotherapy and surgery.
As she fought her battle with cancer and as her daughter, Marika, grew older, Rafte strived to explain what was happening in terms that her daughter could understand at each stage of her development. During hospital stays, Rafte and Marika kept a notebook as a way of keeping an open dialogue. Rafte would include cards and messages in the notebook, which a friend or relative would take home and read to Marika each night. Marika, in turn, would send back drawings and notes for her mother to enjoy.
Most importantly, says Rafte, the family made sure over the years that her daughter felt loved, involved and secure. Now age 10, Marika understands that her mother is a cancer survivor, and because of Rafte’s continued involvement in the Pink Ribbons Project, cancer awareness remains a big part of the family’s life.
“Cancer definitely changes the dynamics of a family,” says Rafte. “It caused us to reevaluate our priorities, turn more toward our faith and put things in proper perspective. I’ve tried to use my cancer in a positive way. It isn’t always easy, but I get therapy out of helping others and staying involved in the world of cancer.”
Recognizing that each patient’s cancer, family and situation are unique, cancer support organizations strive to meet the patient and family’s individual needs, build on their strengths, and offer realistic suggestions and coping mechanisms. Above all, experts want women to know that cancer is not an individual disease. Almost everyone will be affected by it in some way during their lifetime, either through their own experience or that of a family member, friend or acquaintance. The good news is that help is available.
“I am now part of a group that I never wanted to be a part of,” says Diane. “And, I never thought I would say this, but it’s has been a life-changing experience for the better. Cancer doesn’t have to stop your life.”
Author’s Note: Having breast cancer is a very personal experience, and we applaud those who shared their stories and contributed to this article. Some pseudonyms have been used to protect the privacy of the women and families featured.
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Jessica Rush is a regular contributor to Houston Family, a United Parenting Publication. She also works with Camp for All, an organization for children with special needs.