In recognition of National Breast Cancer Awareness Month, we share one mom's story of how she helped herself - and her children - cope with the fear and baldness of breast cancer.
By Carol O'Day
The writer is pictured here two years after her diagnosis with her children John and Emily.
At the age of 36, while doing what was, for me, a rare breast self-examination in the shower, I found a hard lump on the outside edge of my left breast. I had a 5-year-old daughter and a 3-year-old son. There was no history of breast cancer in my family. I was not in the over-40 age group of women who should receive annual mammograms. I was, and am, ironically, married to an oncologist.
I kidded myself into believing he would say it was nothing. After my kids went to bed that night, I guided his hand to the spot and said, "Feel this." His eyes flashed up to mine, and a shadow crossed his face for a split second. He collected himself, told me it was probably a benign cyst and immediately picked up the phone and spoke to his surgical colleague who agreed to see me the next morning.
The next day, I was diagnosed with invasive ductal carcinoma of the breast. Previously healthy and active, I underwent surgery, chemotherapy and radiation in a fervent effort to blast every last cancerous cell from my body. I spent an inordinate amount of time in bed, vomited regularly, wept openly, spoke more frequently on the phone with friends, went bald and suffered mild, intermittent depression. Statistically, there was an 85 percent chance that my cancer would not recur. Yet, I worried that I would be among the 15 percent of women whose breast cancer does return and is more resistant to treatment upon recurrence. I feared I would not survive, and my children would grow up motherless. I couldn't sleep, and I logged my fears in emails to friends near and far at 2, 3 and 4 a.m. for weeks.
But the worst part was that the daily life my children knew was upended. Our phone jangled off the hook. Friends and neighbors delivered dinners and volunteered to shuttle my children to and from preschool. In the early weeks following my diagnosis, my children bounced between friends and grandparents, utterly destroying their daily routine.
As for me, I became a sleepy, weepy, somewhat wacky and, eventually, bald woman. My children were deeply affected by each grueling round of chemotherapy, the sound of me retching in the bathroom, the systematic disappearance of my eyelashes and eyebrows, and later by my daily donning of wigs and scarves to mask my bald head. In place of a mom, my children were handed an ill, hairless lady who sort of resembled a chicken. Such a transformation of a mother - however temporary - is profoundly frightening to children.
9 Keys to Coping Amid the Chaos
When the first wave of shock and fear ebbed, I managed to focus on how to make this experience less frightening and more tolerable for my children. By trial and error, and relying on the wisdom of women who had survived this disease before me, I quelled some of the chaos and created a soft landing spot in which we could weather the storm as a family. These steps have become the core of the advice that I, as a 10-year breast cancer survivor, now regularly pass along to other mothers diagnosed with cancer.
1. Eliminate the unnecessary. I listed all the committees and volunteer opportunities that filled my calendar, sat down at a desk and began calling. I explained that I had been diagnosed with breast cancer, was undergoing treatment that would require all my energy for the next year and resigned from the committee or obligation. No one objected, and many offered to help.
2. Answer their questions with honesty and reassurance. When faced with a bald, vomiting or fatigued mother, children ask, "Are you going to die, Mommy?" They need validation and honest reassurance. I learned to respond, "I know it is a little scary to you to see me sick/losing my hair/tired, but I am working hard to get better," or "I need to rest now so that I will get better and can take you to the park tomorrow." Don't promise what you cannot predict. Eventually, I was able to tell them, "No. The doctors said my cancer is all gone. I should live to be really, really old."
3. Accept help. I was flooded with offers of help from family and friends. I allowed a well-organized friend to arrange a volunteer dinner rotation three nights a week so that I could conserve my energy and my good hours for my children and not spend them food shopping and preparing meals. My children witnessed the generosity of friends and experienced new foods as a result. I said "yes," gratefully, when friends offered to run errands or drive me to and from appointments. I used my driving time to take my children to and from preschool or the park. I said "yes" when my parents offered to stay during the weeks of chemotherapy. I let my husband run bath time, push swings, make breakfasts and fold laundry.
4. Selectively share your children. Presented with daily offers from other parents to take my children home from school to play with their child, I learned that my children were anxious and overwhelmed by too many play dates. I accepted these offers only once or twice a week, on the days I knew would be my hardest treatment days, and kept my children close on my good days.
5. Create a new normal; keep quiet activities on hand. While I still occasionally took my children to the park or out for an ice cream cone, I felt more vulnerable, less social and wanted to stick closer to home during treatment. So I developed more activities to engage in with my children when I was not able or eager to leave the house. I kept a basket with crayons, scissors, markers, paper, puzzles, games and children's books next to my bed and the sofa so that my children could cuddle up for an activity that I could manage even on a difficult day.
6. Express yourselves. Keep a journal, email friends and talk to family and friends to express your multitude of feelings and fears. But when possible, reserve these activities for times when your children are out of earshot. Adult fears are unsettling to children, who need reassurance and normalcy. Encourage your children to ask questions, draw pictures or keep a journal of their own to express both their concerns and their support. Identify family or friends who are available to answer their questions if they don't want to ask you directly. I kept my children's drawings taped to the wall beside my bed and on the refrigerator. The visible evidence of their support cheered me and empowered them.
7. Educate yourself and your children. Learn about the specifics of your breast cancer. Ask questions about treatment options, symptom management and the side effects of your treatment. Locate support groups. The more you know about your disease, the better able you will be to take charge of your care and recovery - and, ultimately, your children. Read children's books about breast cancer to your children or give older children books to read (see "Throwing the Book at Cancer"). Encourage children to ask questions about what they read.
8. Pay it forward. As my treatment ended, I purchased multiple copies of the children's books I had found on breast cancer. We donated them to my cancer center to create a lending library for other families. Seeing other children whose families were experiencing their mother's breast cancer and those who had survived it and resumed healthy lives gave my children a sense of community and made them feel less alone and fearful. Sharing the books not only allowed my children to put the experience behind them, but to experience the joy and satisfaction of helping someone else.
9. Teach early detection. Teach your teenage daughter about breast self-examination and remember to conduct your own. Give yourself and every woman you know the gift of a breast self-examination shower card.
Ultimately, I was most effective in helping my children cope with my breast cancer when I was able to dispel the fear that I, and they, attached to my diagnosis. When I summoned the fortitude to marshal resources and educate myself about the disease, I was able to parent through breast cancer much like I handle other parenting challenges - through education and understanding, coupled with communication and my profound love for my children.
Throwing the Book at Cancer
While I was undergoing treatment for breast cancer, I was stunned to learn how few children's books existed on the subject of a parent with cancer. While the media promoted walks for the cure, pink ribbons and congressional hearings on funding for increased breast cancer research, there was a dearth of books on the market to help the smallest warriors in this battle comprehend this disease.
Through sheer determination, I developed a bibliography of books for children who have a parent with cancer. The quality of the books varies, as does the age-appropriateness of each book. Some offer clinical descriptions of the disease and its treatments; others are soothing, psychological validations of the gamut of emotions a child experiences in the situation. Consider donating these books to your local cancer center or make a gift of some of the age-appropriate books to a friend or family member recently diagnosed with cancer.
Picture Books (Ages 3 to 8)
- The Hope Tree: Kids Talk About Breast Cancer, by Laura Numeroff, Wendy Schlessel Harpham and David McPhail, Simon & Schuster, 2001. In a fictional support group, animal characters describe feelings regarding their experiences with a loved one with cancer. Issue format directed to the 4- to 8-year-old reader.
- Michael's Mommy Has Breast Cancer, by Lisa Torrey, Hibiscus Press, 1999. With the help of Grandma and Daddy, Michael learns how to cope with his mom's illness and his own feelings.
- My Mommy Has Cancer, by Carolyn Stearns Parkinson, Park Press, 1991. A 5-year-old boy deals with his mother's breast cancer. The book relies upon clinical descriptions of the basics of cell biology and chemotherapy. The book also describes hospital visits and has a Halloween context.
- The Paper Chain, by Claire Blake, Eliza Blanchard and Kathy Parkinson, Health Press, 1998. Two brothers adjust to the life changes that accompany their mother's breast cancer diagnosis. Comprehensively addresses issues that occur over the course of a mother's surgery, chemotherapy and radiation, including fatigue, wigs, increased child responsibility for household chores and anger.
- Sammy's Mommy Has Cancer, by Sherry Kohlenberg, Magination Press, 1993. Sammy, 2, and his family deal with the disruption and emotions that occur when Sammy's mom undergoes breast cancer treatment.
- Tickles Tabitha's Cancer-tankerous Mommy, by Amelia Frahm and Elizabeth Schultz, Nutcracker Publishing, 2001. A story for ages 4 to 8 told with humor.
- When Eric's Mom Fought Cancer, by Judith Vigna, Concept Books, 1993. Eric's grandma comes to take care of him while his mom goes to the hospital for breast cancer surgery. Eric is lonely, anxious and resentful. But his dad takes him on a promised ski trip, where they find a special hat for his mom.
Chapter and Other Books (Ages 7 to 12+)
- Both Sides Now, by Ruth Pennebaker, Henry Holt and Co., 2000. This young adult book chronicles a mother's breast cancer experience and her daughter's response to it in dual-diary format.
- Our Family Has Cancer, Too!, by Christine Clifford, Pfeifer-Hamilton, 1997. Comic book-style illustrations and activities invite readers to write down questions for parents, doctors or teachers and encourage family dialogue.
- Our Mom Has Cancer, by Adrienne Ackerman and Abigail Ackerman, American Cancer Society, 2001. Billed as a book for ages 9 to 12 but also suitable for younger children, this nonfiction picture book is written and illustrated by twin sisters whose mother had breast cancer.
- Good Luck, Mrs. K!, by Louise Borden, Simon & Schuster, 1999. A third-grade girl's beloved teacher is stricken with cancer and takes a leave of absence from school to undergo treatment. The story addresses the girl's anxiety and sadness over the absence of her teacher.
- Kathy's Hats: A Story of Hope, by Trudy Kirshner, Albert Whitman & Co., 1992. Nine-year-old Kathy has cancer and wears a colorful collection of hats to compensate for her hair loss. Her friends adjust to Kathy's hair loss and eventually celebrate the end of treatment with a hat party.
- Life's a Funny Proposition, Horatio, by Barbara Garland Polikoff, Henry Holt & Co., 1992. Horatio, 12, has already experienced the death of his father from lung cancer when the book opens.
- Loose Threads, by Lorie Ann Grover Margaret K. McElderry Books, 2002. In this novel of poems, seventh-grader Kay Garber shares the experience of her grandmother's battle with breast cancer. Kay must come to terms with her grandmother's diagnosis, treatment and, ultimately, her death.
- Mommies Don't Get Sick, by Marilyn Hafner, Candlewick Press, 1995. Abby copes with her mom having the flu. This is a light, non-cancer illness story that expresses a child's feeling of being overwhelmed while trying to substitute for Mom, and the child's appreciation of her mom's return to wellness.
- What's Heaven?, by Maria Shriver and Sandra Speidel, Golden Books, 1999. In a Q & A format, a parent answers her daughter's big questions following the death of a grandparent.
- When a Parent Has Cancer: A Guide to Caring for Your Children, with Becky and the Worry Cup, by Wendy Schlessel Harpham, M.D., HarperCollins, 1997. Self-help book for parents written by a physician, with guidelines for a parent to help his or her child deal with the issues presented when a parent has cancer.
- American Cancer Society - If you or a family member or friend has been diagnosed with cancer, begin your journey at this site, which "comprehensive" doesn't even begin to describe. The site is packed with support programs, research, fund-raising and other critical topics.
- American Cancer Society's Cancer Survivors Network - This is the place to go for support through individual Web pages, downloading personal stories and tapping into discussion boards.
- Breastcancerawareness.theshoppe.com - You'll find all things pink at this site dedicated to the merchandise that helps fund research and raise awareness of the fight to cure breast cancer. You can pick up the breast self-examination shower card here, too.
- Susan G. Komen Breast Cancer Foundation - Provides support, the latest health news and information about local fund-raising walks at this comprehensive site.
- The Wellness Community - Offers numerous free programs to support cancer patients and their families.
Breast cancer survivor Carol O'Day devised several ways to comfort and care for her children despite the often difficult side effects of treatment. Wigs became part of her daily wardrobe.