And in Health, page 14
Research on women with breast cancer out of Stanford University shows that women who engage and compel others socially have healthier diurnal cortisol slopes than women who routinely push others away (think of cortisol slopes as our daily dose of a buffering stress hormone). In other words, talking about what’s in our hearts in a way that compels other people is physically beneficial.
Now let’s focus on the benefits of privacy. Privacy is helpful when you are eager to not be treated differently. One of the hard parts of others knowing about your illness—or your spouse’s illness—is that you can’t control the reaction and the stakes are high. A number of patients shared that they just wanted to be seen as the strong, independent, or funny person they were before the diagnosis, not the “person with cancer that everyone felt sorry for,” as one patient phrased it.
Some patients and their spouses shared that keeping things private was especially helpful at work, where concern about losing assigned responsibilities, demotions, or even firing was a realistic possibility. While the Family and Medical Leave Act (FMLA) was designed to protect patients and family members from employment discrimination in larger businesses (those with fifty or more employees) and applies to workers who have worked 1,250 hours, there are many employees who work in smaller businesses or are at new jobs where those protections don’t exist. Privacy may be a necessity in circumstances in which disclosure would put a needed job at risk.
And while the FMLA can protect us from losing a job, it can’t protect us from losing responsibilities or how we’re situated at work. For example, one patient shared that he was in line to lead a new multiyear effort to roll out an expensive product in a fourstate territory. He was expected to make decisions about everything from the amount of the product to produce to where and how the product was initially placed with willing distributors.
But soon after he shared his diagnosis, the role was given to a colleague, presumably because his boss wanted assurances that the person in the role would be there for more than one year.
Here’s another variable for the soup. For some patients, keeping things private may be possible early in the cancer experience but unrealistic later. That is, our appearance can change radically during some treatments. Those with head and neck cancers, for example, will often have surgeries that are difficult to conceal. Some chemotherapy drugs can shave hair cleaner than a military barber, and there are a number of other side effects of treatments that can betray privacy. In my case, I had rapid weight loss during chemotherapy, swollen prednisone cheeks, baldness, and a greenish pallor. If I were on a bus and you were asked which person on the bus was ill, you’d have picked me out immediately.
When cancer’s side effects “out” an otherwise private patient, his or her social supports may know or suspect the patient has cancer before the patient discloses the diagnosis. This often has the paradoxical consequence of the patient getting far more attention than they otherwise would have if they had just told everyone—when people start asking one another questions like, “Is Eleanor sick?” or “Did you see her hair coming out during the choral practice?” as happened to one woman I spoke with.
If you are one of those folks who would like to keep your diagnosis (or your spouse’s diagnosis) highly private, you should be aware that some people in your network may feel betrayed if they discover the truth. Those individuals may feel they were robbed of an opportunity to be helpful and supportive and that not hearing the diagnosis indicates that you feel they are not a “close enough” friend. Others will suspect you didn’t trust them enough. These consequences are paradoxical, because the privacy-seeking individual usually seeks privacy to “keep things the same as they were,” but the new information disrupts the old relationship and results in greater distance and even hostility or feelings of hurt.
I want you as a couple to have a practical discussion about the types of help that would be useful to you. Perhaps it’s receiving meals; it might be getting rides or having friends with you at chemotherapy or radiation treatments; or it might be just having friends come over to watch movies and not talk about cancer.
I also want you to nudge yourself toward telling other people what you are going through. Naturally, there’s a balance to find here, but most of us hold too much back and share too little rather than too much.
I have seen too many people starve at a virtual banquet of social support because they believed that they should manage their anguish alone, that talking about the pain in their hearts would reveal weakness, or that no one wanted to hear it.
On the other hand, if you are an individual for whom sharing the diagnosis might have serious negative consequences for your work or social life, I hope you will explain this well enough for your spouse that he or she understands your reasoning, and you can find a negotiated response that will work well enough for both of you.
6-4. Don’t be afraid of support groups.
So we are both optimistic, and one of the things that helps us get there is education. Learning what we could about this, going to support groups. Meeting people that had dealt with this a lot longer than we had.
—HELEN KELLEY
People are so good. If you push them away you’ll miss out on a lot.
—DAVID MILSON
Many of us are wary of spending too much time around other patients, or people who know patients, and some of this fear is reasonable. When I was sick I didn’t want to hear stories about people dying, I didn’t want to be reminded of what could happen. I didn’t want to belong to this group!
The understandable desire to avoid being exposed to bad news can prevent us from getting wisdom from other patients. And there is much wisdom there. In my own case, to put it simply, I would likely not have children if my mother hadn’t had the nerve to talk with the mother of another patient. Her son had been through significant treatment, and my mother peppered her with questions. She eventually told my mother about a new urologist in town who had a sperm bank. My mother acted on this information, which our physicians did not share or seem to know about, and the ultimate result is that I now have two adolescents. OK, so maybe this story didn’t end as happily as it could have, but they won’t be adolescents forever. I hope. And, of course, I’m not suggesting that going to support groups will result in two adolescents living in your house.
Many of the patients I spoke with found great solace as well as helpful information from accepting help from other patients, both informally or through structured support groups. Among other help they received, patients told me, was assistance in dealing with chemotherapy, selecting reconstruction surgeons, finding wigs, negotiating with insurance companies, ideas for maintaining sexuality, and explaining cancer to children.
David Spiegel at Stanford conducted a series of experiments evaluating patients in support groups and found in one cohort that they lived twice as long as people on a waiting list.4 The survival benefit was not found in replication attempts, but future studies did find that patients who participate in support groups have improved mood and pain relief.5 We don’t have a good understanding of how these groups improve our quality of life, but there’s no question that they do.
There’s clinical lore among mental health professionals that men tend to like support groups that focus on learning skills and information, while women appear to enjoy groups that are more about relationships, but these stereotypes clearly don’t hold for everyone. In addition, it is clear that mixed diagnosis groups can be tough for both the people who are newcomers to the cancer experience and those who are journeymen. In other words, patients with metastatic breast cancer often appear to benefit more from groups with other women who have metastatic disease, rather than mixed groups in which some of the participants will have stage 1 disease. And women with stage 1 disease may struggle in groups with women with more advanced disease.
Support groups offer information, but they also offer us a chance to see our own experiences as they echo in others. Hearing our own words come out of someone else’s mouth can be enormously validating and give us an opportunity to gain distance and perspective about our own struggles. For example, one patient told me that he realized he had unrealistic expectations for his wife’s recovery when he heard another man express feelings similar to his own in group. There was something about hearing those words come from someone else that gave him the vantage point he needed.
6-5. Explore social networking.
The CaringBridge thing has been wonderful. It really has, it’s been a great source of getting information out to people and that’s probably pumped me up as much as anything, seeing comments. I’ve had over four thousand hits from people that have responded. People I haven’t seen in thirty years, people I coached thirty years ago. The whole spectrum, from the ones I coached last year to people I had their kid in camp back in 1980. Some of the stories are really funny, they perk you up, they take you out of the moment. . . . It gives you a bright spot.
—DAVID MILSON
We mostly talk about him, to tell you the truth. I am sick of it. I am sick of that. Every time somebody calls on the phone and they will say, “How is David doing?”
—BARBARA HARRISON
Very quickly, for those who aren’t computer people, social networking typically refers to computer-based communication with other people. Unlike e-mail, social networking provides computer-based environments that make it easy to communicate with a larger network of individuals than individual e-mail might, and these are often supplemented with video, photography, or music.
As we’ve discussed, of all psychological variables, social support is the most powerful. Whether we are a rat in a cage, a soldier on a battlefield, or a caregiver helping our spouse through gastrointestinal cancer, being supported makes a difference in our wellness.
Social networking Internet sites such as Facebook, Google+, and Twitter are providing survivors and spouses opportunities to connect with one another. Research numbers demonstrate the explosion in the growth of these sites: A study conducted in late 2009 focused on Facebook found that of nearly 300,000 people connected to 757 groups, half or so were for patients and caregivers.6 Just three years later, the same methodology identified over 600 groups focused on breast cancer alone with a total membership of over 1,000,000!7
YouTube also offers people the opportunity to make and view video diaries about the illness and caregiving experience, and studies have just started to analyze the videos presented by patients and caregivers online.8 For individuals looking for specific information, especially about side effects, there is a site called “Patients Like Me,” which has stored data from over 120,000 patients across 500 conditions and may be the richest source of accessible data on patient side effects in existence outside of electronic medical records.
CaringBridge is a nonprofit website that offers members the ability to create information-dissemination pages where they can share their stories in a blog format and hear from readers who are likely already in their life. These pages are especially helpful for connecting with individuals slightly outside of the inner social circle, as it allows for acquaintances to hear directly from the patient or caregiver without having to intrude, and then they can communicate back through the pages.
Finding the right fit for us online can be a challenge, but a number of couples I spoke with were using social networking to connect with friends outside of the cancer world or to find likeminded individuals who had also struggled with similar illnesses.
Groups can also assist with information dissemination. Social networking sites can help spouses and patients get information out to everyone in the social network, instead of having to answer the same questions over and over.
6-6. It can be very hard to accept the help we need, even when it’s offered. That’s not a good enough reason to not accept needed help.
I’m trying to let somebody else take care of it because I know when school starts in August I’ll have to go back to work. I’ll have to allow somebody to come over and do those things for us. I guess it’s just letting go of some of the control. I like control. I like everything to be in a line.
—VALREE MILSON
A number of the couples I interviewed said that when they were initially offered assistance from extended family, friends, churchgoers, or coworkers, they rejected it. Many of us have grown up in a society that is firmly rooted in do-it-yourself philosophies. Asking for help, or even receiving help when offered, can feel like failure or something only done by those with no or little pride. But at times, it is too hard to march through the cancer experience without assistance.
Here’s the tension point. Some patients want to grind this out without getting help because they are getting what they need from their spouses. But I spoke with a number of spouses who were burning out. They were emotionally and physically exhausted from caretaking, even though they deeply loved the person they were caring for. Simply put, whether they realized it or not, they needed help.
Research indicates that at different times spouses need skill, education, counseling, or help with tasks. When they accept help, caregivers are better able to cope, more confident in their ability to manage stressors, and enjoy a better quality of life.9
Taking advantage of help is also usually awkward. It takes energy at first to instruct someone as to what you need, and often people who need help don’t get it because they are nurturing the falsehood that it’s harder to explain what’s needed than to do it oneself.
When I work with a new couple facing cancer, one of the questions I ask early is “What have you done when people have offered to help?” Most couples shrug. To benefit from help, it takes speaking up when a friend or coworker says, “Let me know if we can do anything.” The response is usually to say “Thanks” and nothing else. A more productive response would be to say, “Thank you for the offer. Actually, given how sick Linda has been this week, I’d be very appreciative if you could file those reports for me,” or “We’ve been at the hospital so much, I don’t think our plants have been watered. If you could do that for us this week, it would be very helpful. It would just take me a few minutes to explain.”
Most people are glad to have something to do to be helpful. It does take some organization to prioritize the things that need to be done.
7
Let’s Talk about Sex
In this chapter we turn to the topic of sex. There will be kinky photographs, titillating stories, and fantasies involving whips, pulleys, and a trapeze. OK, maybe not. Instead we’ll have some frank conversations about sex during the cancer experience. We’ll cover three issues. The first section focuses on the concept of flexibility, because in my experience, most couples are remarkably consistent in their sexual activities and we must often adapt to our new circumstances to stay sexual. Second, I’ll speak to those couples for whom sex is no longer physically possible and talk about the need to maintain intimacy even though sex is gone. Finally, some couples stop being sexual because the patient feels deformed or unattractive. These individuals forget how adaptable the human sexual response truly is.
7-1. Though we may not be able to be sexual in the exact same way we once were, most couples can still be fabulously sexual.
I just have no desire. It’s hard to talk to him about it, because you know, he just thinks it’s him. And it’s not him! I try to tell him all the time it’s not him. It’s just my body. It’s hard for him not to feel rejected.
—DIANA KOUNK
The biggest change is she’s way more tired now. . . . It’s not even something that crosses my mind now because I know she can’t handle it physically.
—TOBIN HODGES
My husband had to have his gall bladder out by the same doctor that did my surgery. And he came home from the hospital—they don’t keep you long—and I think I had just had my stitches out from my breast cancer surgery the day before. . . . So he comes home and we are in bed and my doctor had said to us, “You can resume your sex life whenever you want to,” and ha ha, I just turned around and said that to my husband and we had to laugh because we were both feeling so terrible.
—BARBARA JANZEN
The research shows that about half of all women treated for cancers of the reproductive organs1 and half of men treated for prostate cancer2 have long-term sexual challenges. Virtually every couple I spoke with had some sexual changes associated with cancer. But a great number also rediscovered, or in some cases reinvented, their sexuality.
Forgive me a brief digression. When I was in graduate school we were required to enroll in a variety of psychology courses that weren’t closely related to clinical work. Many were dull. One of the most notorious for boredom was titled “Comparative Psychology,” which actually meant ethology, or animal behavior. It didn’t help that the professor’s voice sounded like an air conditioner with a broken fan belt. Yawn.
At one point the professor taught us about the stickleback fish, a little silvery fellow found in freshwater in Europe, Asia, and North America. The professor was actually trying to teach us about issues with decision-making (stickleback fish make better decisions when they are in large groups) but also took a few moments to describe the sexual behavior of the fish. Given the tedium in the room, I perked up when he mentioned sex. Even fish sex.
