Love her tender
When breast cancer strikes the woman in his life, a man needs a crash course in caregiving
When I was 49 years old, I got a new job that I didn't really want. My wife, Marsha, was diagnosed with bilateral breast cancer--a tumor in each breast--and I became a breast cancer husband.
Like any new job, this one came with a heap of unfamiliar responsibilities. I had to figure out what to do when Marsha was walking around like a zombie in mourning: Cheer her up? Commiserate? Keep silent and hope the mood would pass? I also had to reassure our kids that everything would be OK, even when I wasn't sure it would be.
I had to find a helpful role to play in the doctor's office so I wasn't just sitting there like a dumb lug while my wife investigated her treatment options.
As the weeks went by, new tasks kept landing on my overloaded plate: Help her cope with the pending loss of her hair to chemotherapy. Comfort her when she was afraid. And, oh yes, maintain some sort of physical intimacy so our relationship would stay strong.
Slammed. I'm not complaining. My wife had a far more difficult path than I did. She was the one who would suffer the assaults of the anticancer treatments: lumpectomies, chemotherapy, and radiation. But there I was, by her side: distraught, clueless, and in shock. Former NFL star Chris Spielman remembers his reaction back in 1998 when he learned that his 30-year-old wife, Stefanie, had breast cancer. He felt as if Mark McGwire had slammed him in the head with a baseball bat. He went for a baseball image, he said, because he was trying to imagine the world's most powerful knockout punch.
The medical community recognizes the critical role a husband can play in helping his wife cope with the stress of a breast cancer diagnosis and the treatments that follow--and how much help he needs. Last year, the Centers for Disease Control and Prevention awarded a $1.1 million grant to Men Against Breast Cancer, an educational group, to develop instructional programs for husbands. The pilot program begins this fall, but for now most men are on their own when it comes to cancer caregiving.
Men may mean well, but they tend to jump to the wrong conclusion. The No. 1 wrong conclusion: They think a caregiver has to fix things. "You can't find the solution or rescue the fair maiden," says Carol Stevenson, 56, of Arlington, Va., a five-year survivor. But that doesn't mean the spouse is helpless. Carol needed her husband, Phil Gay, to be there with her. Not to solve her problems or to conquer cancer but to stand by her side and to accept her as she was. "The most important thing for me was to know it was all right to be sick and not beautiful, and not the epitome of femininity. He was always there to hold me if I needed to be held or to talk to me if I needed to talk. I was very grateful for that."
So where does a husband begin?
Al Shockney is a role model par excellence. In 1992, he had just come home from a late-night job driving a limo round trip from Baltimore to New York City. When he walked in the door, his wife, Lillie, who had been trying to come up with an appropriate way to break the news of her diagnosis that day, blurted out: "I have breast cancer."
Al was very calm, Lillie remembers, and asked, "Are you sure?" She was, since she was then a nurse at Johns Hopkins Hospital and had seen the biopsy report with her own eyes. Al is one of those rare men who knows just what his wife needs to hear. "I have known you a long time," Al said. "I know you are strong, with a zest for living, and we are going to be here for one another; we are going to be fine." Lillie's eyes still tear up, 12 years after this conversation. "It was very convincing," she says.
At the time, Lillie didn't know what was really going on in Al's mind. "I was scared to death," Al recalls. "My life flashed before my eyes, and everything was going by so fast. I actually wanted to cry." Sitting in her cozy living room, Lillie laughs. "That would have been really bad for me if you did--really bad."
Feckless. Not every husband lives up to Al's standards. In fact, it seems as if just about everyone has a story to share about a bad breast cancer husband. A breast surgeon told me of a feckless fellow who abandoned his wife and two young children, leaving her to face chemo (and care for the kids) on her own. Another spouse took his wife back to her mother and announced, "I can't deal with this."
Despite the tales of rogue breast cancer husbands, not all men cop out. Indeed, a Canadian study titled "Marital Stability After Breast Cancer," which appeared in the Journal of the National Cancer Institute in January 1999, addresses the "belief that husbands desert wives who have breast cancer." According to coauthor Jill Taylor-Brown, director of psychosocial oncology and supportive care at CancerCare Manitoba, the study examined data on two groups of women of similar ages from Quebec City: 200 newly diagnosed women and two other randomly selected groups of married women. In surveys taken 18 months and eight years after diagnosis, the two groups looked pretty much alike. The groups reported similar rates of divorce, separation, and marital dissatisfaction.
Different stories. Of course, a study is just a study. In every marriage, a breast cancer crisis plays out differently. Some couples who weren't especially close before the diagnosis pull together to fight the cancer as a team. Conversely, some marriages that seemed to be working just fine take a tumble.
What goes wrong? Often, it's a matter of empathy--or lack of it. Which brings me to the breast cancer husband's motto, passed on by many doctors and therapists: "Shut up and listen."
That may sound glib, but there's no better advice. "It's not about you, ya bastard," says Sherwin Nuland with a wink. He's a clinical professor of surgery at Yale University and author of the award-winning book How We Die. "It's not about how sensitive or strong you can be." It's about figuring out what your wife needs from you. And sometimes, what she needs most is a sympathetic ear.
Only it turns out that listening isn't always easy. University of California-Los Angeles psychologist Annette Stanton has conducted studies that might be instructive for tin-eared husbands. Sixty breast cancer patients in the post-treatment phase participated. They all wrote about their experience with cancer, but with different aims. Members of one group recorded their deepest thoughts about the disease. The second group recorded positive changes in their lives that resulted from the diagnosis. The third group just wrote down facts about the disease.
Of the three groups, the writers who let out all their emotions made fewer visits to the doctor to report fatigue, arm swelling, and other side effects from treatment. They were also less worried about recurrence. Perhaps the women who wrote about their emotions got the worrying out of their system, Stanton speculates, and didn't feel the need to go to the doctor as much for reassurance.
If the wife is not inclined to write, Stanton suggests, a husband can make himself available to listen. "Sometimes you just have a really bad day with cancer," she explains. "To provide a receptive listening ear, and to sometimes share with your wife that 'yeah, this is really awful today' is useful."
The husband, meanwhile, may feel isolated no matter what. Society has conditioned men not to let feelings overwhelm them. And even a man accustomed to sharing his feelings with his wife may feel compelled to button up. Consider the story of Leonard Thomas. Eleven years ago, his wife, Toya, was diagnosed with breast cancer a few months past her 40th birthday. She'd found a lump while doing her monthly breast self-exam and went in for a biopsy. Two days later, the doctor called her at home. "Are you alone, or is Leonard there?" the doc asked. "That's when he told us that we had breast cancer," Toya says.
I asked her why she said "we" when she was the patient, and she replied: "Because we had breast cancer. We share everything." The two of them sat up all night after that shattering phone call, cuddled in a chair in their bedroom. They held each other and cried. They were as close as two people could be. Except for one thing.
Leonard didn't divulge his deepest feelings.
Instead, he kept them inside. When the doctor hung up, Leonard's mind ran through a million thoughts. "All I'm thinking is, I'm going to be a widower, my best friend's going to die; I'm going to have to go through this whole dating thing again. All these selfish things. Every selfish thing you can think of, I'm thinking."
He was also thinking how frightened he was. And he didn't let that out either. "I thought it would have been selfish to tell her how scared I was when she was trying to deal with this disease."
Inner fears. He finally let some of those feelings out 18 months after Toya's diagnosis, when he went to a training session for a telephone help line for cancer patients. "I just opened up and talked about how I was scared. It was terrific."
Toya wasn't so sure at first that she would have wanted to hear him confess his inner fears. "If he had told me how frightened he was, I would have told him how frightened I was, and we would have wallowed in self-pity."
But Leonard now says, "It could have been good." Good to let it all out.
And Toya thinks he might be right. "It could have been good. A relief." And it wouldn't have been a complete shock. "I knew he was scared," she admits.
Many therapists--and many couples--attest to the power of sharing. During her treatment for breast cancer, journalist Linda Ellerbee remembers sharing fears and tears with her partner, Rolfe Tessem. "Allowing yourself to be comforting and him allowing himself to be comforted," she says, "brought us together in some small ways that turned out to be not so small."
Yet breast cancer is a complicated disease to treat, and the same goes for the emotional component. When it comes to expressing your feelings, "I think it totally depends," says Maryland psychologist Venus Masselam. The man's uncensored, dark emotions might be more than the wife can handle in the early days after diagnosis. "I'm not suggesting that men should never disclose. And I think you have to play it by ear. If a man has to say it, he has to say it. But it's almost as though by withholding his feelings initially, he's giving his wife the space to have her own feelings."
If everyone is going around saying how scared they are, she adds, "I don't know where one does muster a sense of hope." Maybe that's why a lot of breast cancer husbands do their crying in the car--where it seems as if no one can see them. I remember when I broke down and sobbed, listening to Ray Charles sing "America the Beautiful" while running a few errands. It was shortly after my wife's diagnosis. I thought I must be crazy--until I met other men who shed tears on the road.
One place a husband can make a tremendous difference is in the doctor's office--not as the take-charge guy but as the support person. "Having the husband--or another close friend or family member--can make the woman feel more confident and ready and willing to ask questions," says radiation oncologist Marisa Weiss, president of breastcancer.org. The ideal boss tells a supportive husband to take as much time as he needs. But some employers really do make it damned difficult for the husband. Richard Robert, who is a federal law enforcement agent, had over 700 hours of sick leave--more than enough to take his wife, Suzanne, to all her appointments. And Robert didn't want to miss out. "I just didn't want her to be by herself, getting bad news. I wanted to be there to listen, to be able to help her make decisions, to gather information, to see and to hear, like a copilot."
His boss began asking for documentation. "He probably was thinking this guy has got to be screwing off," Robert says. His wife's doctor wrote a letter of support saying that "a spouse or loved one's involvement is key to recovery." Nonetheless, memos went into Robert's file, and at one point his pay was docked. Eventually, he filed a discrimination complaint--he was the only Puerto Rican agent in the division and felt that anti-Latino sentiment played into the situation. "There was a settlement," he says. "I'm not supposed to talk about it. But I felt vindicated by the settlement."
Robert has a lot of guts. The Family and Medical Leave Act should guarantee you the right to accompany a spouse on appointments about cancer, but once you file a complaint, you risk poisoning the atmosphere at work beyond repair.
That's why some breast cancer husbands keep their wife's disease a secret, using sick days or personal days so they can attend important appointments and calling on family and friends to lend a hand. "I used to recommend that everybody be honest, at least with their immediate supervisors," says Hester Hill Schnipper, chief of oncology social work at Boston's Beth Israel Deaconess Medical Center and author of After Breast Cancer: A Common-Sense Guide to Life After Treatment. "I think that's mostly true, but I understand that there are some workplaces where that is a mistake because of job security." She does offer a cautionary note, though: "Think about why you're not disclosing. Is it because you're embarrassed or because they'll screw you at work if they know?"
Touching. Breast cancer takes a toll in the bedroom--a topic that doctors seldom broach. Typically, men are nervous about recommencing sex after surgery. They're afraid. Can I touch this? Can I do that? Will I hurt my wife? "There's a real possibility for a downward spiral," says Beth Meyerowitz, a professor of psychology and preventive medicine at the University of Southern California who does research on cancer survivors and their partners. The husband may think, "I'm not going to focus on the breast. I don't want to hurt her. I don't want to make her feel it's the most important thing."
The wife, meanwhile, may think, "He's not touching my chest the way he used to. He must be disgusted." So she pulls away. And he thinks he made overtures too soon. Mary Jane Massie, a psychiatrist who sees breast cancer patients at Memorial Sloan-Kettering Cancer Center in New York City, tells them, "If the man is avoiding sex, it is often because he is frightened. Take your husband's hand and put it on your chest. Tell him, 'If you touch here and here, it doesn't hurt. But here it's a little tender.'"
The husband whose wife has metastatic disease faces a very different set of circumstances. Metastatic disease means that the cancer that began in the breast has spread, or metastasized, typically hitching a ride in the bloodstream or lymphatic system and then finding a hospitable home elsewhere in the body. There are statistics about survival rates: Typically, a patient lives two to three years after a diagnosis of metastatic disease. About 1 in 3 women lives for five years. One in 10 survives a decade or more.
The news is devastating for both wife and husband. Chris Spielman remembers his reaction when his wife's breast cancer spread to her lungs. After he dropped his daughter off at school in the morning, a wave of worry and fear swept over him. He had to pull the car to the curb. He curled up into a fetal ball. "I threw up the white flag," he says. "I gave myself a little bit too much credit on how much strength I had to handle this situation. I looked to God and said, 'I can't do this. You win. It's in your control. Give me the strength to do whatever you want me to do.'"
No matter what a breast cancer husband's beliefs, if his wife has been diagnosed with metastatic disease, he can surely identify with Spielman. The news is shattering, and it will take all of your strength--and then some--to cope.
With metastatic disease, there may be years of treatments. And while you can try to give your wife hope, you have no right to expect her to be positive all the time. "A negative attitude is not good and not bad," says Roz Kleban, administrative supervisor of social work services at Memorial Sloan-Kettering. "It's just normal."
For women with cancer confined to the breast, the future is more (guardedly) optimistic. In the world of cancer, people talk about the New Normal--a different sort of life, changed (for the better, one hopes) by the brush with death. Some therapists half joke that when breast cancer survivors talk about how their lives have changed for the better, listeners say, "I'd sure like to get some of what they got."
My wife would beg to differ. Yet for some women (and their husbands), the disease can be both a trauma and an opportunity for positive change. Frank Sadowski admits that life has changed, and not all in bad ways. At age 45, his wife, Laura, had a mastectomy and 3 1/2 months of really tough chemo. Now they are forging their New Normal. "Cancer certainly isn't a gift," says Sadowski, the vice president for consumer electronics merchandising at amazon.com. "But it's a blessing."
Change. He reflects on his choice of words. "As crazy as that sounds coming out of my mouth, I think, in a way, it has been a blessing for my wife, and for both of us, in different ways. It has really changed her outlook on life. She enjoys the things she enjoys more." As for Frank, he reports, "I wouldn't say I feel like it's been a radical change, like getting hit on the head by a coconut or seeing God next to you. But there's been a significant change in the way I prioritize things and what I think is important. Things that used to be really, really important, like problems at work, aren't important in the same way. Life's too short to mess around with this stuff."
But part of the legacy of a breast cancer diagnosis is worry. It's been three years and a month since my wife called me to tell me that she most likely had breast cancer. At times (and as time goes by), the disease fades from mind, like a distant relative we really don't care for. But other times, breast cancer comes roaring back--perhaps on the eve of a checkup with one of Marsha's cancer docs, or when the disease claims a victim from our circle of friends or from the world of celebrities.
My fervent hope for the brotherhood of breast cancer husbands is that your wife will fare well. That one day soon, your biggest problem will be figuring out what to tell well-meaning acquaintances who say, "They got all the cancer and your wife is going to be fine, right?" And that you will be able to reply, as I do, "Well, they never know for sure with breast cancer, but I can tell you this: Marsha is feeling good."
This story appears in the October 11, 2004 print edition of U.S. News & World Report.