By Liz Szabo, USA TODAY
When Al Shockney’s wife was diagnosed with breast cancer, he was gripped by fear. For about half an hour.
But her diagnosis, which could have paralyzed him, instead gave Shockney a mission.
“It did cross my mind, ‘What would I do if she wasn’t around?’ ” says Shockney, 66, of Reisterstown, Md.
“But then I thought, ‘What can I do now? I know I can’t stop this from happening, but I’ve got to make her realize that whatever she is going to go through, I’m going to be there with her.’ ”
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With a woman as special as his wife, Lillie, “you do what you have to do,” he says, “because you want that girl with you for the rest of your life.”
The Shockneys are among a growing number of couples living with breast cancer. Nearly 2.3 million women in the USA have had breast tumors, making them the largest group of cancer survivors, according to a report in 2005 from the Institute of Medicine, which advises Congress on health.
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Couples such as the Shockneys say they’ve been inspired by presidential candidate John Edwards and his wife, Elizabeth, who announced last month that her breast cancer has spread to her bones, an incurable condition.
Experts praise John Edwards for supporting his wife and commend Elizabeth Edwards for speaking openly about a disease that women once commonly hid. Yet experts say Elizabeth Edwards’ fighting spirit, along with her desire for normalcy and her reluctance to let cancer define her, is not uncommon, even among women who have advanced cancer.
Laurel Northouse, a professor at the University of Michigan School of Nursing who studies the needs of families with cancer, says a diagnosis of advanced cancer forces couples to find ways to live fully — often for several years — under the shadow of a fatal disease.
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“While the ‘temporarily well’ look at someone who is ill as beyond the pale and in the land of the dying, the patient just wants whatever time they have to be as rich as possible,” says Diane Meier, director of the Center to Advance Palliative Care.
“They are thinking about how to live and how to live better.”
Although all diseases are difficult, breast cancer poses special challenges for couples, Northouse says. According to the American Cancer Society, the average age at diagnosis for breast cancer is 61 — six years younger than for cancer in general. One-quarter of patients are under 50. Like Elizabeth Edwards, 57, many patients are still raising children.
The partners of cancer patients face tremendous stress, Northouse says.
“Having to watch someone die in slow motion is about the hardest thing you can do,” says John Noss, 55, of Round Hill, Va., whose wife, Karin, has advanced cancer. “There is not a day that goes by that I don’t think about the fact that I’m going to be on my own.
“I try to steel myself against it. I don’t know if it helps.”
A sense of isolation
Male caregivers grapple with unique burdens, says Marc Silver, who wrote Breast Cancer Husband after his wife developed the disease. Many fear saying something that might make their wives more upset, he says.
Husbands often feel isolated when their wives fall ill, he says. Unlike women, who may find emotional sustenance from a wide network of friends, men often confide only in their wives. And friends who shower attention on patients may forget their husbands also feel terrified and overwhelmed.
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Spouses of cancer survivors are as likely to be depressed as patients, yet are less likely to receive help, according to a study of nearly 500 people published online Tuesday in the Journal of Clinical Oncology. Spouses were lonelier than patients, with worse spiritual well-being and marital satisfaction.
Spouses also were less likely to report personal growth because of the experience. In the study, 27% of husbands reported marital distress, compared with 11% of wives.
John Noss says spouses often experience a mixture of grief and guilt. Many careen between such thoughts as “Why is this happening to me?” and “Oops, it’s not happening to me. Get over it.”
“Men assume that if they’re not the ones with cancer, then they’re not suffering as much,” Northouse says. “But the depth of their suffering is pretty extensive, whether they recognize it or not.”
Though spouses don’t need to “beat themselves up” for feeling vulnerable or tired, Northouse says, couples eventually need to move past their initial shock.
“There is not always an answer to ‘Why me?’ ” Northouse says. “At some point, you have to mobilize around what you’re going to do instead of why it happened.”
Even the most devoted husbands can become exhausted, Northouse says. Men are often a family’s sole financial provider, working full time while ferrying their wives to medical appointments, providing complex nursing care and assuming additional household duties, such as child care, cleaning and errands.
“I used to feel like I was walking around with a big plate on my hand, and people kept piling on it and worrying, ‘When am I going to drop it?’ ” Silver says.
Yet husbands can give their wives great strength.
Shockney says he tried to be prepared to see his wife’s mastectomy scar for the first time. He remembers how she scrutinized his reaction. “She could have stared a hole through me. I knew I couldn’t let her see that I was shocked or disappointed. I said that everything looks fine and tried to look as normal as I could. I guess I pulled it off.”
Making a woman feel beautiful
Experts say women may need extra nurturing during therapy, which can strip them of their hair, sexual organs and libido. Some medications can make intercourse difficult or even painful, says Lillie Shockney, 53.
She says her husband helped her make peace with her scars. Al Shockney, a former truck driver, says she wasn’t losing her breast, she was gaining a chance at life.
“I never looked down in the shower and said ‘My breast is gone,’ ” recalls Lillie, whose cancer has not spread to other organs. “I said, ‘My cancer is gone.’ ”
Al also found ways to make his wife feel beautiful after she underwent a second mastectomy, two years later. During a drive in the country, he surprised her by announcing that they were actually heading to a honeymoon suite in the Pocono Mountains. When she protested that she hadn’t packed a bag, he informed her that they wouldn’t need a change of clothes.
“He said, ‘I don’t plan on us leaving the hotel room. I heard when you lose one of your senses, the others become more intense. So maybe when you lose your breast, your other erotic zones become more significant, too. I plan to test out this hypothesis over the next 48 hours.’ ”
Planning a legacy
And though cancer can be grueling, Northouse says, it also can prompt couples to change their lives for the better. When faced with a life-threatening illness, many look to leave a legacy.
Many cancer patients say they long to spare others from the pain or loneliness they endured. Silver says he wrote his book to provide other husbands with the kind of guidance he wished he had had.
Karin Noss, 49, says anger made her want to change the system. A doctor in 1994 initially dismissed her breast lump, which allowed the tumor to grow for more than a year before it was correctly diagnosed. In 2000, cancer returned in her spine and hip. Now, as a member of the board of the National Breast Cancer Coalition, she campaigns to improve quality and access to care.
Breast cancer also gave Lillie Shockney a new direction. She says it forced her to ask, “How do I want to leave my mark on this world?”
Today, she organizes college “breastivals” to teach young women about cancer, using humor to make the topic more approachable. Participants can even earn “booby” prizes.
Lillie, an oncology nurse, began volunteering at the Johns Hopkins Avon Foundation Breast Center in Baltimore shortly after her cancer returned. Although she initially planned to volunteer six hours a week, she soon was working 20.
She is now the breast center’s administrative director. “My husband said this is what I was destined to do,” she says. “And I feel energized by every woman that I have the privilege of healing.”
