An Odyssey Within the Prostate Cancer Experience:
For Women Only
“Life is a beautiful gift box
to be opened
not a problem to be solved.” [1]
Remembering
David and Connie were some of the first people we had over
for dinner following my return from the hospital. As could be expected, I felt
exhausted and frightened by the ordeal. I had prostate cancer and it wasn’t
going to go away.
The four of us engaged in small talk around our kitchen
table. It seemed like sort of an unspoken pact, maybe even a contract, to stay
away from any real concerns. And then, as if the pact were shattered, like a
dam suddenly broken through by the sheer weight of the water pushing against
it, David quickly asked me questions about the surgery, and he and Connie began
to offer me support, and reassurance, and even prayers. Suddenly, my wife,
Kathy, put her fork down and addressed us three. “What about me she asked? Doesn’t anyone want to know how I am doing
with all this?” David and Connie apologized and went quiet. I began to weep
and then so did Kathy. In all my pain and sadness and fear, I realized that I had
misplaced my worry and concerns about her. And so began the passage to let go
of my needs long enough to visualize hers. This was a terrible conscious
awareness for a family therapist well trained in the understanding of cancer as
an interpersonal disease. It affects all of those in a sick person’s
relationships: spouses, partners, children and family. Had I lost all
perspective about her in my feeling frightened, isolated, and emotionally
abndoned? The answer is obvious, yes.
How many other men newly diagnosed with prostate cancer, or
attempting to live with and through cancer, all trying to heal from its wrath
had made the same terrible mistake I had made? The answers came from the many men
and their partners I have talked with these last 15 years. I had not met with them
as a psychotherapist, but as a fellow traveler who has already walked further
down his path than they had down theirs. I did not use my private practice office,
but met with them in cafes, restaurants, their kitchens, even their car or
mine, sometimes alone, and many times with their partners. I shared the same
illness they did. We were like a special group, a secret club, with membership
limited to prostate cancer amongst us.
I learned a great deal
about them and explored much about who they were, where they were going, did
they believe they would their live or die, and what would happen to their
partners and families. What were their dreams for the future? How stuck and
frozen were they during this time for them? Regardless of their answers, I
tried to show them that I was not afraid of their struggles and the burdens
they carried. Many conversations were about how they felt, and I had only to understand
and verify that their feelings were legitimate for them.
At the same time, I developed a deep respect and admiration
for the women in these interpersonal cancer experiences. They seemed left out
of the equation; they said they felt that way. With all or at least most energy
focused on their husbands, these were women who drifted and felt as isolated
and lost, as their partners, but seldom spoke of that. They were afraid of
deflecting the light away from their husbands, and in the process of self-denial,
they became too quiet. Not out of introspection, but from sadness unexpressed, fears
unexpressed, frustration unexpressed, anger unexpressed, and other feelings and
thoughts denied or unspoken. Yet, when asked, there were women who were able to
verbalize feelings of anger, great sorrow, love, resentment, compassion, guilt,
fear, and obsessive worry. From their deep silence to vivid statements of intense
feelings, I wondered what each woman wanted and needed to heal, to learn and
grow emotionally from her experiences, and to plan for the future. Could they
learn or use the skill to be present “in the moment” (the Buddhist term is smriti) with their men and at other
times, with themselves.[2]
Not to focus on what they hadn’t
done in the past, or to anticipate too far into the future, but to be “here and
now” for whatever the “now” holds for them. There is always a fine balancing
act to do this, especially when our thoughts automatically carry us, almost
obsessively, to a future that is yet unknown.
One Stop on
a Long Journey
We all know that prostate cancer, like all life threatening
illnesses, has deep psychosocial (psychological/ social) and emotional
implications for the men it strikes and in all their relationships. Men can
respond to this illness with extreme sadness, worry, depression, anxiety, lack
of energy or lethargy, distrust of others, and poor and depreciated self-worth.
Some cannot enjoy their lives any longer. On the other hand, men can also
weather the storm and carry on, losses or not. “I got treatment and we believe we are doing quite well. We made
adjustments to our lives together.” While this is what I have seen and
observed over the years, what could I now offer the women who are wives and
partners of the men having such difficulty coping and adapting? What have I
learned from our many conversations that will assist other women just beginning
their journey with their partner or who feel stuck and frozen in a journey
already begun with diagnosis and treatment in some part of their past?
Let me begin with the obvious. I never talked with a man or his
partner who had actually anticipated getting prostate cancer. It simply isn’t
something that could have been planned for or anticipated. No couple had set
aside parts of themselves to prepare for this or squirreled away emotional
resources to help them in coping. Some remembered their wedding vows of “in
sickness and health,” but that didn’t seem like much help either. No planning,
no roadmaps to follow, no provisions stored. No proper shoes or clothing for
their journey. No time set aside for all this. They were all planning other
things in their lives. And while life seems to be what happens to us when we
are planning something else, this diagnosis of prostate cancer makes all of us
stop in our tracks and pushes us back on our heels with no respite to plan for
a changed and threatened future.
When we look at a Family Life Cycle, we can see some of the
“whys” of our lack of preparation. If we as men live long enough, we will all
probably get prostate cancer; but in advanced age, it generally does not kill
us. If we get it in our 50’s and 60’s, the mortality rate is serious. With this
diagnosis and treatments available for men, our lifecycle can grind to a halt.
At this stage, one I call the Transition and Empty Nest
Period, our kids have probably left home or about to, our work is about as
advanced as it may get or we may be at a career crossroad, our homes may be
close to being paid off, we should have left the anxieties and uncertainties of
young adulthood behind, and our partner relationship should be in the process
of renewal and exploration. (Our relationship with our partner is not predicated
on our children any longer. Q=V-CI, in other words, the quality (Q) of a
marital partnership equals the viability (V) of it minus the children’s input
(CI)). In fact, we have probably already begun to renegotiate our relationships
with our children. We may also feel caught in the “sandwich generation,” one in
which we feel responsive to the growing independency of our children and the growing
dependency of our parents. Some of us have begun serious assessment of
retirement possibilities. All or most of these tasks are suddenly replaced by
an “illness-prone” focus. Life cycle change, evaluation, and exploration are
quickly replaced by a focus on this prostate cancer.[3]
To Him, to
Her, to Them
What is this all about? There are predictable and anticipated
stages for a family. Each stage has specific tasks and skills to accomplish
those tasks before moving on. If a family gets stuck within a stage, they
either remain there, immobile and unable to proceed, or skip to the next stage
without accomplishing the required tasks and skills necessary. I am concerned
that an “illness prone-family,” such as one with prostate cancer, can remain
stuck at that stage, or moves on without the necessary skills to be successful at the next stage I call the “Elder Stage.”[4]
Being stuck or getting pushed ahead without proper skills is a problem in
coping and adapting ready to happen.
Those relationships already in difficulty and in dysfunction,
will suffer greatly when prostate cancer strikes. But, it can be just as
difficult and traumatic and lead to marital dysfunction in healthy and
productive marital relationships.[5]
The trauma is so great, the pain so ongoing, the losses so tremendous, and the
suffering so intense that many couples find themselves unable to cope or adapt
to the reality of the changes to him, and to her, and to them. I think of
coping as an attempt to find balance in one’s life, stay focused on what is
most important, and to find some meaning or even purpose in all this. Balance
and focus are difficult enough, but to find meaning and purpose seems
impossible. While some couples appeared to find meaning and purpose through
their religion or spiritual connections, many others felt abandoned and denied
comfort and healing through religion or spirituality.
How we wish that we would have had a couple, on their own journey
of healing, with whom we could talk and share and problem solve. What changes
would I have made, and what would we have done differently? There are still
times when I think about these questions. There are times when we still talk
about these questions. They have become a small part of the landscape about who
we are as a couple.
Traditional mental health therapists, who have never
experienced living with and through a life threatening illness, may use
standard psychotherapy techniques of cognitive behavioral therapy. They tend
not to be effective in that they are designed for mental health problems, not
difficulties in coping and adapting to serious illness. My many years of experience
as a therapist seemed to be of little use to these couples. However, talking
with them, listening to them, and verifying their feelings as appropriate for
them seemed to be helpful. For me, it was about being with them, in their presence, and not doing. Their knowing that I lived with and through a serious
diagnosis of prostate cancer and a tough prognosis was the empathic bridge needed
for compassionate caring.
Taking on
Too Many Roles
Prostate cancer, like all serious illnesses, makes the
partner a caregiver. Surgery and recovery necessitate this frequent partner to
caregiver role change. “I have had to
take care of him in a special way that I was not prepared for.” Women can
soon suffer from caregiver fatigue,
which is a sense of feeling chronically sad, exhausted, manipulated, anxious, and
even depressed as a result of the physical and emotional energy expended.
Eventually, a woman can undergo compassion
fatigue or a chronic inability to care for herself. In addition, I believe
that excessive caregiving is a response to a man’s inability not to take
advantage of his partner’s offering, or a woman’s excessive need to overly care
for her husband or partner. “My husband
is still incontinent, and I continue to go to the store to get him pads. I
realize now that he is too embarrassed to get them himself, and he won’t talk
about it.”
Men can become dependent on their partners for all kinds of
support and view them as the primary communicator (especially to physicians and
others in the health care system) as well as his caregiver. “When I go to the urologist with him, he
doesn’t ask many questions. He expects me to do it.” Some women wished for physician
prescribed support groups for their husbands. “He is so isolated from others and won’t seek out a group because he
isn’t interested in telling his problems to other men.”
Some talked about
the need for some support group for themselves. “I don’t have anyone to talk to who really understands what I am going
through.” The women had described their husbands as lonely, isolated,
fearful, and emotionally beyond what they could offer them.[6]
“I am the one to always answer the phone and talk to our friends about how
he is doing. I don’t know how to help him anymore.” There is much to this
issue to discuss, and careful mentoring will assist both partners in achieving
maximum need for her caregiving without excessive reliance on his part. I found
the issue to be a very sensitive one to negotiate but one that is extremely
important for both of them. However, it is important to conceptualize that
these roles can and should change over time due to changes in health status.
Sadly, this is not always the case. Once again, careful guidance is essential
to foster healthy change over time.
·
Lack of sleep is dangerous for
anyone, but especially a woman who is in a care giving role. I usually
recommend over-the-counter assistance with tryptophan, melatonin, HTP, or
calcium/magnesium. They are safe and not habit forming in my experience. Proper
information about the mental and physical processes we use in getting ready to
sleep so we can get refreshing amounts of sleep is readily available. There are
many web sites devoted to both sleep hygiene and over the counter aids. Discussion
with a primary care physician can certainly steer a woman in the right path.
Some women will need a prescription medication to regain their previous sleep
pattern. Once again, talking with a personal physician is helpful, for they
should be well trained to counsel about sleep hygiene.
·
Dietary and nutritional complements are
often forgotten. Do not overlook them. This is the time to care for you.
· Retain or gain a personal support
system. Keep connected. Let others be there for you.
· Have fun. Sounds impossible to you?
You deserve it, seek it, it is there. Often friends do not contact you because
they don’t know what they can say or do to help. You can help instruct them of
exactly how they can help: they can go out with you, get coffee together, go to
a movie, and rally around you to have fun the way you used to have fun. It
gives your friends a purpose, makes them feel useful, and gets you out of the
house and surrounded by those who want to support you.
·
Be grateful and appreciative of all
you have. Do not abandon your gratefulness, and find new and challenging ways
to feel and express those emotions. Once again, this may seem difficult and out
of your realm of possibility. But you can do it. Change the way you think about
what you have and for what you are grateful, and it will be possible. In other
words, let yourself return to the time when all things were possible and that
may set the emotional stage for this to happen. You have control of this; do
not let go of these possibilities.
I know from my personal experience that I chose to engage in
meditation, imagery and affirmation training, (I estimated once that I listened
to a guided imagery tape while in bed with ear phones on over 1,000 times.) tai
chi, prayer alone and with my faith-based group, nutritional and specialized
vitamin supplements, periodic psychotherapy for me and for us as a couple, reading,
biking, listening to jazz, walking alone and with Kathy, and even long rides in
my car. [7]
The
Experiential Bridge
We would explore places, both near and far where we hadn’t
been, as we explored in our conversations issues we had to cover again due to
my illness, and topics we thought there would be plenty of time to talk about, which
suddenly required our full attention. There were times I dropped the ball and I
let fear and worry simply overwhelm me. Kathy seemed to be willing to pick up
the ball and carry it for us until I returned from wherever my fear and worry
carried me. The couples with whom I talked shared similar stories. We all as
couples struggled, and sometimes failed, to find that important balance in our
lives, to stay focused on what is most important to us, and to seek meaning and
purpose in our lives.
Coping, like grieving, was one step ahead and then two
back and then maybe nothing ahead for a time. Eventually, I believe there will
be forward movement if we are to heal. At the time, however, it just doesn’t
seem like it is ever possible. That is what the support is for: to provide the
emotional and experiential bridge to continue on the journey of healing and
eventual transformation by our experiences. Yes, time does heal, but it is essential
that we do something important and valuable during this time.[8]
Ernest Hemingway once wrote that we are all severely damaged
by our experiences in life. While I believe some of us, but not all, are so
negatively affected, “afterward many are
strong in the broken places.” [9]
There may be great strength and resilience beneath these wounds, but they
are only accessible with direction, guidance, and alternatives. Similar to this,
I did refer some men and their partners for traditional counseling. I would
recommend this if they were troubled and suffered emotional problems and/or
severe relationship difficulties prior to diagnosis and treatment. I continued
to meet with them as an adjunct to treatment.
I do not use the words
cure and heal as meaning the same
thing. Cure is about eradication of
disease. To heal is to make decisions about ourselves as we create that sense
of wholeness, wellness, and completeness, regardless as to whether we are cured
from cancer or not. It is not surprising to me, but it was for many men and
their partners, that they could heal themselves and each other, not once, but
many times.
The Power
of Persistence
When we did well, we did well. When we failed in the
struggle, we failed miserably. And we tried again and again. Each day was one
of experiencing this illness, the losses that we felt, the suffering and
lamentations, and then we would be transformed. I was never the same again,
neither were the men, and neither were their partners. Sometimes, the stories
these men and their partners told me resonated in me and encouraged me and us as
a couple to continue. This persistence is an amazing experience in itself. At
times, I felt speechless and awed by its strength and power.
One major key to coping was to be appreciative that life is
one of impermanence. But this time, it cannot be denied or repressed. We all
have to learn to have some grace with impermanence and accept it if we are to
cope with this cancer. This is about letting go of the impossible and remaining
in the “here and now.” It is also about always having a future with us men in
it. Set a place for us at the table of our family if we are to have the faith
that we have a future together. “If you
do not think about and plan for the future, you cannot have one.”[10]
But what can our future be? If we don’t know if this cancer
will end our lives, or if it is out of control and metastatic, what then? What
could I offer others with their struggle in a journey of such sadness and
grief? Impermanence about our lives, and a real acceptance of it, is never about
a loss of hope or not setting a place for us with the lives of our partners and
family. I realized that false cheeriness was not helpful. Women are many times
more gifted than men in understanding these beliefs. At the same time, I found
them, as caregivers, denied the opportunity to share their feelings, their
beliefs, their fears, and their worries. It was as if they were in a role in a
play that simply had no place for their humanity to be expressed.
Working with a man and his partner, both living with and
through prostate cancer, requires an effective process for a couple new to
their journey or stuck at some unpleasant plateau. While men seem at first
unwilling to join such a process, I believe they can engage well and gain as
much from the experiences as a more motivated partner. Men are described as
more ambivalent; maybe so, but they should be offered the chance to begin this
process. If they will not, the partner should forge ahead alone, to reduce the
sense of her isolation and receive the benefits of conversation with people who
are empathic and compassionate because they are also on a similar journey. It
is a social responsibility to seek out such mentors and guides. Lastly, I
believe that such mentors should be given reflective learning time with an
individual trained in reflective learning techniques. This will prevent burnout
and over identification with others. Reflective learning is thinking about
one’s experiences and interactions to best integrate them into the care of
themselves and others. [11]
The major contributor to finding a couple’s successful path
that coincides with their journey of living with and through cancer focuses on
communication. To be able to say what one feels, thinks, and believes and to be
able to listen to the partner’s feelings, thoughts, and beliefs is the ultimate
in communication; to be followed by compromise, rapprochement (realignment of a
person’s core beliefs and values), and reconciliation.
However, it is also very important to add that a couple needs
a high level of personal regard for each other, especially during times of
stressfulness on their mutual coping abilities. We must hope that the couple
comes from, or is guided to, a similar level of positive emotions towards each
other. In other words, personal regard for one’s partner is an ongoing and dynamic
response of respect, admiration, and positive feelings, which is essential for empathy-based
communication to be effective.
An Exercise
in Affirmations
I am going to offer an exercise in affirmations. They are
important to your partner and to you because of the “enormity of sorrow” you
both may be facing.[12]
The affirmations are designed to be practiced alone or with your partner,
or even in a group of “fellow travelers”. I suggest that you first begin by
repeating each one silently to yourself, and then say it very quietly. As you
finish each affirmation, tap the table, chair, or even your bed with one finger
before you move on. Saying them silently alerts your consciousness that you are
engaging in the important process of healing from within; saying them out loud
gives your mind and spirit permission to hear and reverberate with the energy
released; and tapping on the table is an external reminder, especially in a
group or with your partner, that you are living with and through this
interpersonal cancer and no one is living it alone.
I have taken the following affirmations and put them in the
first person for clarity and emotional impact on the persons reciting them:
·
A gentle
sweet forgiveness of myself and others
·
A
permission to be who I really am
·
To trust in
my own essential goodness
·
To trust in
my ability to fulfill my purpose
·
To be
conscious in what really matters to me
·
To expand
into the generosity of my true nature
·
And settle
into the peaceful stillness at my center [13]
Lastly,
balance, focus, and meaning are all important in our attempt to cope with and
successfully adapt to this interpersonal prostate cancer. While our journey
appears to be destined for us and our partners by this diagnosis of prostate
cancer, the path we choose of how we will live our life is truly ours to make.
It will be a more enlightened and transformative path if only we understand
that suffering can lead to meaning if it changes us for the better, and a will
to such meaning can lead to a will to live.[14]
Caring, high levels of personal regard for each other, and empathy-based
communication are requirements for a couple’s success.
David
and Connie remain close friends of ours even though they moved away some time
ago. We still keep in touch through e-mail and phone calls. It is good to have
such friends. Kathy and I continue our loving partnership in which we are best
friends. We are extremely blessed.
I wish you
all well…
“At twilight I visit my garden
Where the peonies are about to burst
Someday, there will be more
Flowers than the vase can hold”
S. Glassmeyer15
“The question is not whether we will be given challenges and
limitations. We will. The questions is, how will we hold them, how will we be
changed, how will they shape us, what will we bring to the healing of them,
what, if anything, will be born in its place.”16
Alan S. Wolkenstein, MSW,
LCSW
Clinical Professor of Family
Medicine (Ret.)
University of Wisconsin
School of Medicine and Public Health
Senior Educator and
Consultant: Wolkenstein and Associates, LLC
Mequon, Wisconsin
[2]
Watts,A. This is It. New York: Vantage Books; 1960.
[3]
Wolkenstein A, Lawrence S, Butler D. “Teaching Family: The Family Medicine
Chart Review.” Family Systems Medicine. 1985 3(2) 171-178.
[4]
Wolkenstein A, Wolkenstein M. Evan. “Reflective Learning through Psychosocial
Chart Review.” Annals of Behavioral Science
and Medical Education. Fall 2008 14(2) 62-64.
[5]
Walsh F and McGoldrick M. (Eds.) Living Beyond Loss. New York: Norton and
Company; 1991.
[6]
Evertsen J, Wolkenstein, Alan . “Female Partners of Patients after Surgical
Prostate cancer Treatment: Interactions with Physicians and Support Needs.” BMC
Family Practice. 2010 11(19) 1471-2296.
[8]
Batzler R. Through the Valley of the Shadow. Frederick, Maryland: Hidden Valley
Press; 1983.
[9]
Hemingway, E. Farwell to Arms: Simon and Schuster; 1929.
[10]
Galsworthy G. Swan Song. Part 2 (6); 1928
[11]
Wolkenstein A, Wolkenstein M. Evan. “Using Reflective Learning in Graduate
Medical Education and Practice.” Medical Encounter. Fall 2009 23(3) 97-102.
[12]
Mueller W. Legacy of the Heart. New York: Simon and Schuster; 1992.
[13]
Napatstek B. Health Journeys: Cancer. Hachette Audio Series; 1993.
[14]
Frankl V. The Will to Meaning: Foundations and Applications of Logotherapy.
Penguin Books; 1988.
15 Glassmeyer S. Source Unknown.
16 Muller W. A Life of being, having, and doing enough.
New York; Harmony Books; 2010.
