An Odyssey With Prostate CancerPrint this page
An Odyssey With Prostate Cancer:
By Alan S. Wolkenstein, MSW, LCSW
For Men Challenged by the Many Changes They Face
About the Author
Professor Alan Wolkenstein, MSW, LCSW , is a Senior Educator at Wolkenstein and Associates, LLC. He recently retired as a behavioral scientist in primary care residency training programs. He currently sees patients struggling to live with and through serious illness. He is a 15-year prostate cancer survivor.
I remember returning home from the hospital. I hurt, mentally and physically. Nights were the worst and dreams the most unpleasant. I vividly remember one dream: I was back in the hospital with a steady stream of visitors. They looked sad and worried for the most part. Most hugged me, but I was disconnected from my body - a cloud, eerily unpleasant in the room. I would wake up shaking.
Soon after, I heard a voice from deep within whispering for me to help myself, yet I had no idea how. The cancer had crept outside my prostate and was “incurable,” so how could I help myself? It seemed like a cruel joke. My experiences and all that I had learned until that time seemed to be of no assistance to me. I didn’t know how to cope or adapt to cancer.
I began to wonder if I would ever be “me” again. The answer was no. I was never to be “me” again. Instead I would be a person changed by my experiences and the events of my life. I tried not to lament the loss of the old “me.” I struggled to look forward, desperately hoping there was a forward.
A diagnosis of prostate cancer at any stage can easily overwhelm us, strip away coping strategies, and potentially destroy any semblance of a future. Having experienced these things myself, I now write about the personal transformation of living with cancer. But I believe to experience this transformation, it may require those with cancer to experience momentous loss and for some, deep grieving.
It is important for others with cancer to let themselves emotionally experience this phenomenon of loss and grieving so that they can better understand their journey and reach a place of acceptance. In living with prostate cancer, I struggled and frequently failed to find balance in my life, but I have tried to stay focused on what is most important to me and my family, and repeatedly searched for meaning in my life’s experiences.
Points for Reflection
- Think about how your experience living with cancer has transformed you. What is it like to realize that you will never be the same again?
- Our transformation requires loss and grieving. How does a man learn to cope with advanced prostate cancer?
- How can you help yourself in these times? What skills do you need to ask for help?
My Fellow Traveler
My treatments sapped my strength and energy. I experienced physical and emotional changes, not in a normal progression as one ages, but at an unnatural and dizzying pace that forced me to repeatedly confront my identity as a man and to give up expectations about my physical abilities.
One incident not long after I was diagnosed stays with me: I was walking up an icy hill in our yard from the garage carrying a grocery bag in each arm, and the wind pushed into me from the front. I dropped the bags to keep from being blown down the hill and then fell to one knee, cursing and crying out in shame and rage. An incline I had walked up a million times. Groceries I had carried for years without a problem. Could I ever return to any sort of normal life, and at the same time, pummel these losses until I could finally accept them, reframe them, and integrate them into my life?
At times, I could, and at other times I just could not.
As I grappled with this reality and considered my wife Kathy, I became more aware of her losses, fears, and worries. Would I live and who would I be? What would happen to us? What about our sons? She shared my loneliness, isolation, and fear, often silently.
We then began to talk - really talk about us. We covered new ideas and old landscapes of unfinished issues from our past that we both believed we had time to resolve. We realized that we needed this “now time” to talk, and we could not put it off until some far off date in the future. Through this process, I borrowed her strength often, and I am so appreciative of her. How did she keep her inner wisdom when I had discarded (or maybe just lost) mine? Other men have described this realization: a partner who retains a deep inner wisdom becomes a source of great strength, mentally and even spiritually.
Yes, there were times when this cancer would tap at the walls of my very being. It did not create the weaknesses and chips it found; it merely took advantage of them. It seemed to look for my weak spots as well as vulnerabilities in my marriage. Kathy and I learned again and again that cancer is an interpersonal disease and can conquer us without respect to our relationships and support systems.
Points for Reflection
- Does cancer seem to be an interpersonal illness for you?
- Where do our partners fit in this concept of cancer as an interpersonal illness?
- Think about your physical and mental changes. Who can help you find the strength you need?
My Message to Others Traveling this Journey
We all have multiple inner voices that direct our thoughts and behaviors, and a heightened awareness and deeper understanding of these voices can more effectively lead us through the journey of life. I am a psychiatric social worker and family therapist with a 30-year history of teaching behavioral medicine to physician-residents in family medicine and other primary care specialties.
I am also a man with a 15-year history of living with a serious illness - prostate cancer. I have spoken with many men and their partners as a fellow traveler, mentor, and guide on their own personal and unique journey. I quickly found out that talking with men and their families about prostate cancer was not about psychotherapy of any kind, but about mentoring, listening, and cautious guiding.
My mentees spoke of feelings and thoughts they seldom shared with others, even those closest to them. These men were all at various stages of diagnosis and treatment. I marveled at their desperate honesty.
It was difficult to be a therapist with these men when I shared similar fears and doubts. I realized they didn’t want psychotherapy with me, but a chance to talk with someone going through the same experience. They wanted to reveal inner thoughts with someone ahead of them in the journey, someone who could truly validate experiences and feelings.
That was fine with me: experiences and feelings need to be honored and explored, not diagnosed and treated. There were others to do that.
I wanted to be there for these men; there was no need to be judgmental or critical. I hoped to provide an experience where they could learn to self-assess and realize the need to seek deep inner wisdom to move forward in this journey. I emotionally walked alongside these men and worked to show them that someone else was not afraid of the burdens they carried. I could accompany them on their paths.
Points for Reflection
- Who can you share your innermost experiences with?
- Mentors and guides must learn to be “in the moment” with us.
- Are you afraid of being judged by others who do not understand the experiences of your journey?
Journaling the Journey: Letting Others In
At times I asked my mentees to write about their experiences. By engaging them in the creative process of writing, they could take their experiences to a more mindful emotional level, and offer themselves an enlightened and reflective perspective to better understand the man they might yet become. Many men embraced this exercise.
I referred some men (and their families) for traditional psychotherapy. These were men who had difficulty coping with their lives before diagnosis. The additional burden of cancer gave them no respite from their difficulties and overwhelmed their ability to adapt to this new life-threatening situation. I also referred those who had strong coping skills until this illness, but struggled with staggering new losses and suffering.
Both groups were in a chronic state of crisis, and mentoring or guiding alone would not be sufficient for them. Psychotherapy was one way to gain control when it felt like they had so little. I believed psychotherapy was important despite the acknowledged stigma among men, insurance and cost issues, and potential limitations in physical and mental energy. Finding experienced therapists who understood how to work with these men and their families would help these men believe in their ability to utilize inner strength and resilience to cope and adapt.
Some men living with cancer may feel isolated, lonely and fearful. I call these feelings “three guests.” They are the kind of “guests” that are not invited and don’t seem to know when to leave.
How sad that often one of the first emotional responses we create for ourselves when dealing with cancer is to feel isolated and alone, even when family and friends, as well as professionals, are there to support and love us. Many men described feelings of disassociation from themselves and their partners, feeling they were drifting even when there were other people in the room. We often lack the skills to let others in, at least at that moment. Writing and talking with friends and family, or a therapist skilled in the psychological sciences, may help relieve these feelings.
Points of Reflection
- Why there are so many similarities in the stories we share?
- Do you need psychotherapy in addition to mentoring?
- Have you struggled with the uninvited “three guests” - loneliness, isolation, and fear?
A cancer diagnosis propels us, metaphorically, to the ends of the earth. The return back is a long and arduous journey. However, by having a deeper and clarified understanding of this journey, you can more easily value and bravely face your cancer experiences-losses-grieving-transformation.
The greater the changes we experience as a result of our losses, the greater the grieving we experience. The resulting transformation allows us to feel priorities and perspectives more clearly and intensely. This will ultimately enhance our return to wholeness as men; wholeness that was snatched away by prostate cancer. I believe that through this process you can eventually be drawn into a more mindful place to take best care of yourself.
Practice having grace with your experiences and at the same time, allow your spouse or partner to have grace with their own. Try to be as easy on yourself and on your partner as possible. Always remember that we each have a personal journey unique to our own circumstances and finding grace comes in different ways.
For me, a wise mentor encouraged me to seek grace through guided imagery, meditation, affirmation, exercise, music, faith, periodic psychotherapy, dietary assistance, and especially long, conversation-filled walks with my wife. These activities helped me:
- Reduce feelings of being lost and better myself, which helped me choose my path forward.
- Work at being present and appreciating experiences as they happen.
- Remember my partner’s needs; that she or he mourns all the same losses and may be forgotten during times of crisis and stress.
- Let go of trying to control what is happening. It would seem counterintuitive to do so, especially at a time when we feel so out of control and victimized by our circumstances. As it was for me, the more I let go, the more in control I was of those things I could realistically affect. From such control, I could make a future for myself and my partner.
- Find personal means and strategies to assist myself and family.
Points for Reflection
- Returning back from the metaphorical ends of the earth is a most difficult task. What do you need to make this happen?
- Understanding the experiences-losses-grieving-transformation we live with.
- Letting go and taking control are possible.
Balancing and Focusing
We are stronger than we think. And yet living a full life - physically, emotionally, and intellectually - is complicated and requires input from a number of sources. These include family, partners and spouses, friends, community care givers, social organizations, and healthcare professionals.
However, we can be severely hampered by the multitude of changes that affect us and have little time to reflect on them with our partners or spouses. How we define our masculinity, the changes in our bodies, and an unpredictable world are as frightening to us as our innermost feelings. The grieving may be outwardly intense or inwardly silent and never to be spoken of or shared. I suggest trying to focus energy on what is most important to help bring the world back into balance for ourselves.
Every person is confronted by impermanence. After a prostate cancer diagnosis, our loved ones may see us outwardly afraid for the first time. For some, there is a sense of hopelessness. For others, there is brightness and clarity. Why is there such a difference? I have come to believe that acceptance of impermanence may be the key to successful coping. However, accepting impermanence does not mean giving up hope or relinquishing faith in the future.
Points for Reflection
- We need to live fully and completely in spite of our impermanence; what do you need to live fully and completely?
- When there is no respite from our losses our ability to cope is severely hampered.
The Unheralded “It”
Sometimes men will share their “it” with me. “It” comes unannounced, unheralded, in the middle of the night, without warning and fanfare. “It” wraps itself around our insides and squeezes until we cannot catch a breath as we recoil from its terrifying intensity. If we are asleep, “it” wakes us up. “It” is fear.
We have told no one, shared this with no one. Not our partners, not our families, and certainly not our physicians. “Alan, this is not something to share. What will others think? How can I tell my wife, she is so overburdened already? I am embarrassed by my weaknesses.”
You already know that such intense fears take away from our already compromised strength. It deflects us from attempting to seek balance, to focus on what is most important, and to attempt to make sense out of what is happening to us.
Go ahead, in a quiet time and place, tell your partner or spouse that you are struggling with “it.” Have the courage to share this. Ask if she struggles with “it” also. Tell her or him that sharing “it” with you is OK, and something you can handle. Tell your partner that the struggle is yours also; that in doing so, some night, with your combined strength, without warning and fanfare, fear simply doesn’t appear.
As men, we wait to see if “it” reappears or not. Sometimes “it” is diminished and in a less obstructive state. “This may sound strange, but I am not afraid of my fear anymore. Fear is something I can live with now. It doesn’t wake me anymore.” In the place of fear, there may be quiet and stillness. For some of us, this may be the first time we are truly still within ourselves and our thoughts.
Points for Reflection
- The intense fears of “it” can compromise our strength and interfere in our coping.
- Tell your partner or spouse that you share the same battles.
- Our fears can be diminished.
Work: Work-Energy, Work-Creativity, Work-Continuity
Your work can and should be a place of support, not a place of sadness and rejection. I found that my experiences professionally were similar to those of other men I have spoken with. From co-workers to administration, some people were very uncomfortable with me and treated me with a sense of uneasiness as if I had a disease they might acquire. Some told me that my presence made them uncomfortable and hoped that I would quietly retire. “Alan, you ought to think about retiring. Why hang around any longer?”
Others were outwardly hostile. “I am not coming to any of your meetings because I heard you don’t have long to live.” When I had difficulty moving audio-visual equipment for a lecture, I was told I was physically too weak to handle my work. I stopped wondering a long time ago whether these acts signaled a lack of education or cold hearts.
Some colleagues hung in there with me for a few months and then drifted away, as if they wanted me to get on with my life so they could get on with theirs. Others offered blind neglect and didn’t know what to say, so said nothing. While these were examples of workplace denial and hindered me in some ways, I didn’t sense maliciousness in most of them.
And there were always a few that meant more than a casual interchange when asking how I was doing. Their support encouraged me and helped me feel at ease. I looked forward to being with them as we worked together.
Other men have reported both similar and totally opposite experiences to me. Many felt discouraged and isolated, and I learned that callousness was not unusual. Luckily, for some their work environment produced concerns and good wishes from co-workers. I was always pleased to hear this.
For many men, physical and mental ability, productive work-energy, work-creativity, and work-continuity in our lives as long as possible is critical. This, however, can be denied by the ignorance, denial, and fears of others. As a long time teacher in medical education, I believe that empathy and compassion to those who live with serious illness is most difficult to teach.
Points for Reflection
- We may want to work and be able to, but find ourselves hampered by the thoughts, behaviors, and deeds of others in the workplace. How can you make your work environment work better for you?
- Why is work important to you?
- What do you need as you continue to work?
Let’s Talk About Sexuality
Any meaningful discussion of sexuality can create feelings of discomfort and anxiety among people. I believe that those who have been diagnosed with and treated for prostate cancer require such conversations for they are extremely important and relevant. As adults, many people are still not able to give themselves permission to have meaningful conversations about their sexuality.
The model of PLISSIT (permission, limited information, specific suggestions, intensive therapy) can be helpful in giving individuals and their partners permission to engage in adult conversations about this important component of their adulthood, now under attack by the cancer and its treatments. I have used the PLISSIT model to reduce a shame-based response to adult sexuality.
The acronym PLISSIT may include the following example comments:
P for Permission:
This is the all-important entryway into conversation. “All of us seem to have some questions about our sexuality following diagnosis and treatment for prostate cancer, and I would like to have this conversation with you. It is important to give yourself the permission you need to talk with me.”
LI for Limited Information:
“There may be changes in your sexual response cycle following treatment, so let us talk about how things are going for you and your partner sexually.”
SS for Specific Suggestions:
“You will notice that your erections may be more flaccid than previously. We suggest you and your partner practice more stimulation to see whether that helps you. At the same time, it may be very valuable to rethink sexual needs and expressions and look at other goals to express intimacy and sexuality.”
IT for Intensive Therapy:
“There will be times when therapy with a mental health specialist with additional expertise in sexual therapy will help you and your partner. I am recommending this because there appears to be intense emotional barriers to these conversations and psychological stressors that inhibit your learning new information needed to cope best with changes in your sexuality.”
Prostate cancer and its treatments may contribute to difficulties in sexual satisfaction. In my experience counseling, generalized anxiety, body changes, lower levels of interest, incontinence, and difficulty getting and maintaining an erection all can cause mild to severe sexual dissatisfaction. Couples need to value many behaviors they had long since taken for granted. A return to holding, dancing, romance, or any and all behaviors that are emotionally, physically, and spiritually rewarding are within their control and can strengthen a couple’s mastery over their relationship.
Points for Reflection
- The PLISSIT model can help us overcome our discomfort in talking about sexuality. New patterns of sexuality can be created and recreated.
- Non-demand sexual experiences are physically and emotionally rewarding.
- How can you reconnect and strengthen your relationship intimacy?
Communicating Important Issues to Others
While some men may appear to be reluctant to talk in groups – except perhaps in some areas such as sports or politics – I believe it is necessary to develop the skills to share and problem solve with others about our lives and important relationships.
However, talking can lead to new ways of looking at and living our lives, especially when we share important parts of ourselves seldom (if ever) discussed with others. The wonderful changes I see in men when they open up confirm that we create these feelings in ourselves.
I have learned that a man must visualize himself at the metaphorical table of his family. This is where the work of communicating begins. But the fear and worry of the future stops us from doing so. The courage to visualize this is in us. Our family can set a place for us, but we have to perceive ourselves at the table if we are to be there. Only then will we be there for others and ourselves.
For so many of us, the struggle and labor of deep intensity continues. I remain truly convinced that life holds a special meaning, purpose, and place for us.
Points for Reflection
- It remains our mission to seek meaning, purpose, and intention wherever our path takes us.
- Focusing on our meaning to life, our purpose, and our intentions will help us always.
- Do you restrict open dialogue, and if so, how can you overcome that?
If we regain our deepest personal wisdom and strive to return from the ends of the earth, if we see those important signposts with clarity and brightness, if others continue to make a place for us in their lives, then our transformation is on-going.
We have endured the diagnosis of and treatment for prostate cancer, we have lost much, we have lamented our losses, and we have the strength to carry on. Then and only then will we be transformed.
We are the same men, but different; we are fundamentally, emotionally, and spiritually moved by our experiences. We are making a journey that was not our choice, but on a path that we have chosen for ourselves, and we have a perspective unique to us as individual men.
There is frequently an enormity of sorrow that must be skillfully addressed if we are to reach our personal potential through our transformation. This requires us to live with prostate cancer as an interpersonal disease and not alone. It is not a personal disease, a relationship disease, or even a family disease; it is interpersonal in that it affects us personally, our relationships, and our families.
It affects how we use our energy in our daily lives and interactions. If we cannot allow ourselves to view cancer as interpersonal, we will become frozen in time. If we cannot live with this cancer as interpersonal, we will rigidify our experiences to the point that living is all or nothing, black or white. We will minimize life without the real-time complexities that are there for us to enjoy and be part of.
All of this requires self-awareness, a skill frequently lacking in many men. Can it be learned? Yes, with good mentoring and guidance. Find those mentors and guides. It is crucial that we create and nurture a network of these guides, even though we understand how reluctant we may be to communicate with others.
Points for Reflection
- We must address our enormity of sorrow if we are to realize our potential as men.
- Our family must set a place for us at the table; we must visualize ourselves at the table and not experience cancer alone.
- How can you make sure that the signposts are clear and unobstructed?
“When that inevitable moment comes, often in crisis,
it can change our lives forever.
We can no longer live our lives by accident.
It breaks us open so that we watch our lives with excruciating care,
and we walk on the earth paying infinitely close attention to what is
precious and what is true and what is right.”