Helping Spouses of Cancer Patients

Dr. Jimmie Holland, Helping Spouses of Cancer
Patients
 July 27, 2008Welcome to Yale Cancer Center Answers with Dr. Ed Chu and
Dr. Ken Miller. I am Bruce Barber. Dr. Chu is Deputy Director and
Chief of Medical Oncology at Yale Cancer Center and Dr. Miller is a
Medical Oncologist specializing in pain and palliative care and he
also serves as Director of the Connecticut Challenge Survivorship
Clinic. If you would like to join the discussion, you can contact
the doctors directly at canceranswers@yale.edu or
the phone number is 1-888-234-4YCC. This evening Ken Miller is
joined by Matthew Loscalzo, Director of Sheri & Les Biller
Family Resource Center at City of Hope in California. He is here to
talk about helping spouses of cancer patient's cope with the
effects of cancer.Miller
 I want to start out directly by asking you about a book you just
wrote. It is called, For the Women We Love. What is the
book about?Loscalzo
 Well what we have found is that when a woman is diagnosed with
cancer, the man is rather confused about what is expected of him.
In the past, men have been expected to protect women and to be
supportive, but that has a whole new definition when the woman has
cancer. Men are often totally confused about what is expected of
them and there is no plan. Men are lost and can feel anxious and
depressed. They might even isolate themselves at a time when a
woman needs them most.Miller
 Often men have the sense that they blew it, that they should have
been able to protect their wife. Do you hear any of that at
all?Loscalzo
 We hear that all the time. There is a rational part of, a lot of
people get cancer, why wouldn't my wife get cancer? There is a
logical rational part of that, but then there is the irrational
part where men feel that they should be protecting the people they
love and they think, "I should have made her go to the gym more,
eat better, see the doctor more." Men do not like to feel
powerless, why would they?Miller
 I guess you are saying that there is the combination of a little
bit of guilt and then there is also a sense of not knowing what to
do once you are faced by it.Loscalzo
 Guilt plays out in a very different way. Women tend to feel guilt
more when they get sick, because of the burden they are putting on
the family and the stressors; especially on the financial and
emotional side. Men tend to feel shame, and shame is different than
guilt, because shame is how you feel about yourself as a person,
while guilt is generally something you feel sad that you did and
that you are not proud of. Men do feel shame when the women they
love get sick; whether it is their daughter, aunt or grandmother.
Men tend to feel shame because they are thinking irrationally. They
think they should have protected someone whom theylove, that is the man's job, and that is such an integrated
exaggerated sense of what it means to be a man.Miller
 How often are men able to put that out there? To be able to say,
"I know it is irrational, but I feel ashamed." Is that more
unspoken or spoken?Loscalzo
 It is unspoken because men have so few opportunities to really
talk about this. In the groups that we run at City of Hope, called
problem solving groups not support groups, we bring women and men
together in a room, these are spouses, mothers, sons, fathers and
daughters, and in that context we have just two rules; be
profoundly honest and deeply respectful. Within this context men
are open, they are honest, and women are open and honest about what
their needs are. If you think about it, men and women have so few
opportunities to have grown-up, honest and deeply respectful
conversations; they have no role models for them.Miller
 That is true, in our parents' generation a lot of them weren't
able to communicate for a whole variety of reasons. Most of our
role models are on television.Loscalzo
 Yes, you are right. And the role models that we generally see are
characters of people; they are gross exaggerations of traits that
most people are not proud of. How many women or men can you watch
on television that you would be proud of? There are so few role
models. If you think about our parents, they grew up in a very
different world. Women were not working, the men knew what was
expected of them, but now all the rules are changing. People are
having children later, children do not live close by, and people
are getting sick when they are older. All the rules are changing
for both women and men, so we are both pretty confused about what
we need from each other.Miller
 In the groups that you run at the City of Hope there is the unique
opportunity to really listen to a man in that environment where
they can be honest and really listen to a woman. What do the men
tell you?Loscalzo
 What the men tell us is that they are absolutely terrified that
their wives might die. There is such a burden on men to keep things
positive, to keep it upbeat, they get this message that if their
wife isn't upbeat and optimistic than the cancer will come back
faster. There is no data that shows that, but what we have is a
situation where the man is burdened with the rational and
irrational thoughts that they have about protecting someone whom
they love. But men overwhelmingly are afraid of the women dying and
feel that they are not allowed to talk about it openly.Miller
 You were telling me earlier about what happens when you ask men
who their best friend is.Loscalzo
 Yes.Miller
 Could you share that story?Loscalzo
 There were a series of early studies that simply asked men who
their best friend is, and 80% to 90% of men said their wife. When
the wives were asked who their best friend is, 40% to 50% said
their husbands. Men are much more socially isolated and women have
much larger social support networks. Social support and physical
activity and exercise are two things that consistently lead to
wellness and health.Miller
 Essentially for men they are living with a certain amount of shame
that we just talked about, they are living with the fear that their
wife is going to die. This may be the closest person to them and
their best friend. What are women sharing in that environment that
is honest and open, what do they tell you?Loscalzo
 Well, that is fascinating, because what women tell us is that what
they need most from men is for the men to openly acknowledge that
they might die. You see where the double bind is where both women
and men feel isolated. The women tell us very clearly, "If I cannot
talk to my husband about the thoughts I have at 2 o' clock in the
morning, or to my son, then I have no one to talk to." Women do not
have the interactions with other women that they used to have,
women are socially isolated as well, but compared to men, they have
larger social networks. Women need for the men to at least
acknowledge that they are both scared and that they are committed
to each other no matter what happens.Miller
 I am going to ask you for real nuts-and-bolts advice here. For
people that may not be used to emotional language, what words
should a husband use who wants to try to open up that dialogue and
be a good listener?Loscalzo
 First I would say that communication is the second most important
thing, not the first. Everyone says that it is the first, but in
all the work that I have done, I do not think that it is. I think
connection is more important than communication, because some
people talk to avoid connecting. When you talk about emotional
connection that is when the nuts-and-bolts come in. For women, an
emotional connection comes when you do something with that person.
For example, when women are at a party or at a restaurant, and one
says they are going to go powder their nose, all the women get up
and go with her. I do not think you have seen a situationwhere a man says he is going to the bathroom and five other men
ask to come too. I do not think that happens very often, but that
gets to the heart of it; women feel more comfortable sharing their
vulnerabilities, talking about details and talking about their
experiences while men feel less comfortable talking about their
vulnerabilities. But once they recognize that by sharing their
concerns, doubts and their fears with the woman they love, the
woman feels safer and the man feels more connected to her.Miller
 Let's say a woman is diagnosed with breast cancer and her husband
or partner is walking around feeling afraid that she is going to
die. These are things that we all think about from time to time.
Again, what are the words to use to even open the discussion?Loscalzo
 The most important thing to do is to ask the woman what some of
her concerns are, tell her you love her and care about her no
matter what happens, and that you will be there and will accompany
her to her appointments. There are specific things that women have
told us that they find helpful. I say to men, unless you are going
to get fired from your job, be there with her. And some men will
get fired so they cannot go, they have to work, or she wont have
health insurance and that is a real problem in this country,
however, go with her to the appointments, give her opportunities to
tell you what she is feeling. One of the worst things that men can
do is to minimize her feelings by saying, "Oh, you are going to be
okay, do not worry about it." That makes women feel alone and
isolated. Men feel that is their job but it is not what women
need.Miller
 When a woman is diagnosed with breast cancer, she wants to be of
help to her husband or partner. What are some bits of advice for
her?Loscalzo
 In our groups we talk about this very openly because we are amazed
at how people can be married for 20, 30, 40 years, and they say
they have never had a conversation like this. We tell people that
when someone gets agitated or angry or cries, that is a feeling and
that means pay attention to what is going on. You want to go beyond
the feelings though, because feelings can get in the way of the
content. So for example, when a man makes jokes and a woman feels
put down, the woman can say to him, "I know you did not mean to
hurt my feelings, but what made you make that joke?" The first
response the man usually gives is, "I just wanted to cut the
tension," and then she could say that it creates tension and that
she needs to feel connected to him. The first impulse any of us
have in an emotional situation is usually the wrong one. Let the
first impulse go and say, 'Tell me how you were feeling when you
made that joke, when you went into the other room while I was
talking, or when your eyes filled up with water and you told me you
did not want to talk anymore." To really nail it downand go beyond the behavior, talk about what is inside. Men tend
to make jokes when they are under stress.Miller
 Very common.Loscalzo
 They do that with other men all the time.Miller
 Yes.Loscalzo
 But with women, it is painful and hurtful. When we teach men how
hurtful it is to make jokes when women are hurting, they stop doing
it, because for them they were just trying to help.Miller
 I am listening to all of this on multiple levels, as a doctor, a
husband and as a friend. These are important bits of advice and
insight. For our listeners, we would like to remind you, you can
e-mail questions to Cancer Answers at the yale.edu. We are going to
take a short break for medical minute and then please stay tuned to
learn more about family support and want we would call gender
synergies during cancer with Matt Loscalzo from the City of Hope
Care Center.Miller
 Welcome back to Yale Cancer Center Answers. This is Dr. Ken Miller
and I am here with Matt Loscalzo who is from the City of Hope
Cancer Center and an expert on cancer support and gender issues. We
are having a very, very interesting and illuminating conversation.
Matt, let me ask you, why oncology? Why did you go into social work
within oncology?Loscalzo
 I went into oncology in 1980, and it was a fascinating area for me
because there was so little psychological and social support back
then. In 1980, many people who found out that they were ill found
out very late, so they died very quickly. Since the 1980s there
have been such profoundadvances in cancer and I believe there are 10 million cancer
survivors in the United States. You are the expert on that Ken, and
you know about this area and have talked about it all around the
world. It is a key issue now, but in 1980 it was a different
picture. Before the hospice bill passed there were very few
hospices. There was very little psychological or social support for
cancer patients and I really felt that that was a place where I
could make a contribution where other people were not. I also had a
special interest in pain management and in teaching hypnosis,
meditation and relaxation and physical and psychological spiritual
rehabilitation to people who may have been cured from their cancer
and had no one to go to. I was lucky enough to go to the team at
Memorial Sloan-Kettering in 1980 and I was one of the founding
members there. I found that it gave me meaning and I was able to do
things for other people and that gave me meaning on a very personal
level.Miller
 Let's get back to cancer survivorship. Thankfully, there are more
and more people that are long-term cancer survivors. Years and
decades after the cancer experience we hope people have a healthy
life. What are your findings on how people end up in general? Are
they left with a sense of a scar about how terrible the situation
was, or do people end up being neutral? Do people end up growing
from the experience, or all of the above?Loscalzo
 It is really all of those. I call cancer survivors wounded
warriors because every morning when they wake up, the first thing
they are going to say is, "I had cancer," even if they are cured.
They have to live with that for the rest of their lives. Their
family members live with that for the rest of their lives. There
are patients who grow from it, who make different choices in their
lives and leave jobs that they did not like. Some people leave
relationships that were unfulfilling and they move on with their
lives and they do better. Some people will never recover from the
experience. Some of that may be physical, psychological, or
spiritual. The economic impact of cancer survivorship is major and
in the United States we do not have a safety net for cancer
survivors. We know there is lots of data that shows that many of
these patients do go bankrupt, and going bankrupt in
anyone?s life is a major, major problem. It is demoralizing
and humiliating, but many of these people who may have started off
as middle class, have economic problems for the rest of their
lives. They may not have been able to go back to the job that they
once had, but ultimately, many people do say that their lives have
gotten better after the cancer. They have reprioritized.Miller
 Let me ask you about couples from that point of view. There is
tremendous stress that couples are put under when one of them has
cancer.From your experience, have you seen people grow, what are the
stories that they tell you?Loscalzo
 Well, the stories are mixed. If you are a parent of a child who
has cancer, those younger relationships tend to be more at risk, so
the divorce rate tends to be higher in those couples. If you look
at an adult with cancer, it can definitely bring them closer
because on some level when you get married, you know that this is a
long-term commitment. You expect that somewhere down the road one
of you is going to get ill, that is sort of built in as part of the
relationship. As you get older, that happens, they are special
stressors and it does stress a relationship, but when you have a
relationship where you both make a commitment and a sacrifice, and
you get meaning out of it, those are the relationships that you see
thrive. That is not to say that it is easy, but it is those
relationships that do better over time.Miller
 Any special characteristics of those couples that end up growing
from the experience?Loscalzo
 Absolutely, one of the major characteristics of couples that grow
through their experience are couples who solve problems together,
those couples who can talk about what their concerns are and can
find ways to connect with each other. A woman is going to be more
on the talking side of it generally, and the man it is going to be
physically doing things for her more. Our data shows, and we have
published at least one large study on this, that when we look at
what men contribute, men are very comfortable doing things for the
women in their lives who are ill, things such as going to the
pharmacy, bringing them back and forth to the physicians' office,
cleaning the house and doing practical things. The emotional side
is where men have a harder time. When men learn that the emotional
side is their commitment and love that she needs, they will give
it. Men need a plan of action; men need a mission. That is how they
connect. We teach women that is how men do it, not like their
girlfriends by giving details and talking about the same topic over
and over again. Then men and women both grow and both reach inside
of themselves. The women become more of who they are and the men
become more of who they are, and they decide to be healthy, wise
and courageous people. That means that what you are born with as a
woman or man, is not who you are. You define who you are everyday
by the way you treat people that you love, because the way you
treat people that you love is the amount of respect you give to
yourself.Miller
 Let's talk about an action plan. I want to get some details here
because if ahusband asks me what they can do to be of help to their wife, I
want to give them some advice.Loscalzo
 Well Ken, I want to thank you for the indirect plug for my
book.
Ultimately, the book is one total action plan. We wrote this book
knowing that men need a mission and a formula. Once men understand
what women need in all of our groups, and I mean groups all over
the world, it is amazing how women and men rise to the challenge.
If you give a man a clear sense of what you want from him he will
give it, and that is why it is so important for men to listen to
women and for women to tell men what they really need. We help
women not to say that he should do it without them telling him,
because then that means he is going to fail and she is going to
feel really frustrated, but have men sit down and talk directly and
look at her. When men talk, generally, they do it side-to-side, and
that is when we share intimate things, in a car, at a baseball
game, men do it side-to-side, but when women communicate, they want
the man to be doing nothing else, to be looking at her and to be
giving her his undivided attention. She wants him to be able to
listen to her emotional needs without trying to fix them, just
listen and bond with her. We also teach men that when women tell
you about their deepest concerns you should not try to talk them
out of it, just try to understand it and use the feelings to
connect on a much deeper level. We also tell men that it is really
helpful if you ask the woman what she wants from you. One of the
biggest challenges is that the ladies tell us what men do to help
and most say, "Listen to me, be there physically, buy me small
gifts, not big ones, spend time with me and be physically present,
but it depends." This is what drives men crazy, sometimes women
want you there and sometimes they find you suffocating. Men have
got to listen with a deeper ear; they need to listen with their
minds and hearts. Men cannot allow themselves to get upset when
women get emotional. Emotions are healthy, but women should also
understand that men are generally, not always, but generally, not
as emotional as women are. It does not mean that men do not care,
we are just different, and our differences are what have made women
and men such spectacular problem solvers through the ages.Miller
 That is encouraging. People have their own form of intimacy and
sexuality, and the way they relate to each other physically. When
someone gets sick with cancer and their body is different and their
energy level is different, how does that play into this entire
equation?Loscalzo
 For the cancer survivorship population it plays a major role
because when people are focused on survival, getting chemotherapy
and getting themselves as healthy as they can, sexual function
takes a backseat. When you have fear, it wipes out sexual drive and
decreases libido that peoplehave; that is a physiological response. However, fertility is
important to all people and so the doctor should always ask if they
are still planning on having children, if they have banked sperm or
looked into egg preservation. Fertility is often an overlooked area
so I always mention it. Sexual functioning becomes important once
treatment stops, because then fatigue is less and they begin to
feel healthier, they are eating differently and then
retrospectively they think, what has happened to the last 6 months
of my life? They want to reclaim their person, femininity and
masculinity, sexual function, and for many cancer survivors, sexual
function needs to be redefined, especially with men who have
prostate cancer. They may not be able to have erections. They may
have urinary incontinence and that makes it harder to be sexual. At
the same time, when women have hormonal therapies and other kinds
of treatments they do have vaginal drying and that makes sex harder
and it makes it painful so they may lose their sex drive. If you do
not have the ability as a couple to talk about this in an honest
way, I can refer to so many sad stories where couples who are
deeply committed and loving stop touching each other because they
are afraid the other person may A. Think they are ready for sex
when they are not, or B. The other person will feel sexual, but the
other partner will feel so guilty about having unmet sexual needs,
that they just stop touching. That is a double loss and that is why
you have to talk about it.Miller
 I think all couples in a long-term relationship have good times
and bad times, but going through the cancer experience, what are
the resources that people can tap into in their own
communities?Loscalzo
 I think the person who usually knows the couple best is their
doctor. I think they should always start with the doctor. I tell
everyone that if they want information about their illness, start
with a doctor, if you want to have information about resources
related to your illness, start with the doctor. You can talk to the
nurse and also with the social worker. For those people who live in
rural areas where it is harder to find this, go to the largest
cancer center or largest hospital in your area and call the
department of social work. They often have a list of recourses that
can help you. The internet can be a great resource as long as you
go to a site where they are not selling you anything. Although most
people are treated in small hospitals, not in the comprehensive
cancer centers, the cancer centers do tend to have more resources
and that would be a very good place to start. There are many superb
resources out there as you know Ken, from your work as an
oncologist.Miller
 The sense I have gotten from you is that many people really grow
from the experience of cancer, and couples as well. Is that your
observation?Loscalzo
 Well I think in most circumstances it is a choice. Life is a very
hard place. No one has ever been happy that they had cancer, but
many people have told you and me Ken, that it has made their lives
better. Cancer is really hard, however, you have to decide as a
woman and a man, when you are impacted by cancer in your family,
that you are going to be a healthy and wise person and that you are
going to reach within yourself and find the resiliency and the
resources. Some people decide they are going to allow it to
overcome their life and then they lose twice. Reach within
yourself, decide that you are going to be a healthy, wise person
and solve problems together with your health care team, with your
doctor, your nurse, your social worker, with your spiritual
advisor, and reach out to those people who have walked down this
road with other patients.Miller
 I would like to remind our listeners that there is a wonderful
book out there written by Matt Loscalzo called For the Women We
Love, and it is for men whose partner or spouse has had breast
cancer. It is a wonderful book and very insightful. I really
enjoyed it and got a lot out of it myself. Matt, I want to thank
you so much for joining us today.Loscalzo
 Thank you Ken.Miller
 Until next week, this is Dr. Ken Miller from the Yale Cancer
Center wishing you a safe and healthy week.