0Comments
7:23AM EDT October 20. 2012 - Roxanne Martinez received some of the best news of her life, as well as the worst news, in the same week.
Two years ago, she learned she was expecting her first baby. She also learned that she had breast cancer.
Since then, Martinez has coped with one overwhelming challenge after another: undergoing a mastectomy and chemotherapy while pregnant, raising her daughter, undergoing an additional mastectomy and reconstructive surgery, even taking in a relative's baby as a foster child.
Martinez, 32, says her two toddlers keep her too busy to dwell much on the fears that plague many mothers with cancer.
"Every time I saw the baby's heartbeat, and saw her sonogram, it made me happy to know she was healthy and kicking," says Martinez, of Fort Worth, Texas, whose daughter, Serenity, is nearly 1½ years old, and completely healthy. "But then it would be followed by a chemo appointment."
Martinez and others who have coped with parenting through a cancer diagnosis shared their stories in a recent Twitter chat hosted by USA TODAY.
While the majority of breast cancers are diagnosed in older women, about 25,000 American women age 45 and under are diagnosed with the disease each year, says Pepper Schedin, a professor at the University of Colorado who researches pregnancy-related and postpartum breast tumors.
More than 18% of all cancer patients have a child under 18 in the home, according to Wonders & Worries, an Austin, Texas, non-profit that helps children cope with their parents' illness.
Parents agree that cancer can cast a dark cloud over what is normally joyous time. Like Martinez, however, many cancer patients say their children also inspire them to fight.
"I talk about how I raised my daughter, but for me, she raised me up," says breast cancer survivor Teri Fuller, of Geneva, Ill. "Especially during chemotherapy, which for me was the hardest part. ....She was with me throughout. I still remember her rubbing my bald head and laughing."
When Nashville mom Lani Horn was diagnosed with aggressive cancer at age 38, all she could think about, she says, was staying alive for her three young children.
"Every time I thought, 'I can't climb back into that chemo chair,' I thought, 'I have to be able to tell my kids I did everything possible,' " Horn says.
Many parents say they have trouble asking for help.
"Some days, I had no idea how I was going to change my daughter's diaper, when I didn't even have the energy to walk up the stairs," says Fuller, 36, who found a lump two days after her daughter was born and was diagnosed with breast cancer nine months later.
Christopher Friese, an assistant professor at the University of Michigan School of Nursing, says he urges families to "circle the wagons" and get friends and others to pitch in.
"Be gentle with yourself," says Stephanie Zimmerman, executive director of My Heart, Your Hands, a non-profit serving cancer patients. "Realize that it's OK to accept help, even if it's folding your husband's boxers."
Many hospitals have social workers or cancer navigators who can help patients, as well a child-life specialists who can talk to children, says Marisa Minor, who leads MD Anderson Cancer Center's KIWI program, or Kids Inquire, We Inform. Non-profits — such as the American Cancer Society, Livestrong, Cancer Care, the Cancer Support Community and Susan G. Komen for Cure — also offer help.
Virginia Borges, an associate professor at the University of Colorado Health Science Center, encourages parents to save some time for themselves, such as by exercising, which can help them keep up their strength and energy. She notes that the Young Survival Coalition and Living Beyond Breast Cancer focus on younger women.
Patients also need to give themselves time to talk with their partners, Borges says, noting the strain that cancer can put on marriage.
"Kids cope best when the parent is coping," says Meredith Cooper, executive director of Wonders & Worries. "Give yourself permission to care for yourself."
Many women say they struggle with how to talk to their children about their disease. While these conversations will vary depending on a child's age and maturity, experts offer this general advice.
"Don't share your news until you know for sure what your particular diagnosis is," advises Lisa Bonchek Adams. She devoted a recent blog to the subject of talking to kids, after learning that her breast cancer had metastasized to her bone, making it "treatable but incurable."
Try to project hope and confidence, Fuller suggests, noting that children often take their cues from their parents' attitudes. "I didn't hide anything from my daughter," she says. "But I would follow up tears with an impromptu dance-a-thon."
Reassure kids that they won't be abandoned, Cooper says. "Children want to know who will take care of them," Cooper says. Zimmerman, a cancer survivor, says, "I'll never forget the day our son asked, 'Does Daddy know everywhere I need to be and when?' "
But let yourself off the hook. "It's OK to say, 'Sometimes I'm sad, but that's just me. When I take a walk (or nap or whatever), I feel better," says Marc Silver, co-author of the bookMy Parent Has Cancer and It Really Sucks: Real Life Advice From Real Life Teens. The book, written with his daughter Maya, is scheduled for publication in March.
Wait to share your news publicly until you have told your children, Adams advises. "Speak to children early on after diagnosis, to make sure they don't hear about it from somebody else," says M.D. Anderson's MInor. Marc Silver, author of the book Breast Cancer Husband, agrees, suggesting that parents "definitely want to use the word 'cancer.' It would be devastating to hear a family member or neighbor bring it up."
Share the news with your children's teachers and coaches, Adams says. "Grief in children is complicated, and it's important that all of the adults know and can be on the lookout for odd behavior," Adams says. "My first call yesterday morning, before I left for surgery, was to reach my daughter's high school psychologist."
Don't "overdisclose," by focusing on facts instead of emotion, says Meredith Cooper, executive director of Wonders & Worries.
Keep up rituals and family time, says Cooper, who says it's important for both parents and kids to have some "cancer-free" time.
Look for books, videos and websites that offer advice. For little kids, Borges suggests the picture book You Are the Best Medicine, by cancer survivor Julie Aigner Clark. Boehmer recommends the booklet "When Your Parent Has Cancer," from the National Cancer Institute.
M.D. Anderson has developed a video for kids ages 6 to 12, narrated by a young girl, called "Kid to Kid: When Your Parent Has Cancer."
Encourage older kids to attend a parent's therapy, Borges says. Children can "see what Mom is going through," Borges says. "They get a chance to ask questions."
Let kids know it's not their fault, and nothing they did caused a parent's cancer. "Kids will often think that if they thought 'I can't stand my mom' in the days surrounding her diagnosis, it's their fault," Zimmerman says. Silver adds, "I heard one kid say, 'Now I can't get mad at my mom. Mom said, 'Go ahead. I can take it.' "
Let kids be kids. "Teens may struggle with guilt," Minor says. Kids yearning for independence may want "to be with peers, while also wanting to be at home with a parent. Encourage balance." Tami Boehner, a breast cancer survivor, says, "I don't want my daughter to think she has to take care of me."