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Voice Male - Summer 2004

"Yes, I Am Afraid": A Man Struggles to Heal
Emotionally After Testicular Cancer

By Brian Pahl

When I was 21, I found a lump on my right testicle that turned out to be cancer. During the next three months I would endure the removal of one of my testicles, major exploratory surgery to my abdomen, the discovery that the cancer had spread, weeks in the hospital, and two rounds of chemotherapy. All in all, it was the most painful, terrifying thing I have ever experienced. It took me over four years just to admit that. I thought it would be weak of me to acknowledge my fears, but I realize now that I have never been stronger. The words that follow are a window into my experience with testicular cancer, the anguish I continued to feel after treatment, and what I am doing to heal emotionally from what was the most difficult time in my life.

It was September 1992 and a week after my second and final session of chemotherapy. I packed my things and moved to Los Angeles to live with a friend. I had to get away. Three months of my life had been stolen from me, and I was not about to sit around anBrian Pahld waste any more time feeling sorry for myself. I figured it would be best for me to get back to the things I had been doing prior to having cancer. I thought I was doing what was best because my doctors, family, and friends seemed supportive of my decision. It was of great importance for me to prove to myself and everyone else how strong and determined I was. Being a strong patient had helped me fight the physical part of having cancer, and I thought that acting like a strong survivor would help me overcome my emotions.

It worked for a while, because I refused to believe or acknowledge that any negative feelings existed. I simply ignored my emotions, and for four years I continued to reject the notion that I had unresolved feelings, even though they would arise from time to time. I failed to realize that moving away and assuming the state of mind that I did would prevent me from dealing with the emotional turmoil going on inside.

I am now able to admit that I still feel traumatized from having cancer. At times, I still feel like a victim. Occasionally, I break into tears while watching a movie or reading a book because memories of what I experienced become vivid in my mind. The fear, the pain, and the uncertainty that were a part of having cancer all become real again, if only for a few moments. I wake up every day to this enormous scar on the front and side of my torso. It will never allow me to forget what my mind and my body endured and continues to remind me of the fear I feel today. Yes, I am afraid. I am afraid that all of the effort I put into making myself well might have been for nothing, because the cancer could come back. On the other hand, I feel just fine, aside from the pains left over from two operations. I feel like I did when I was first told I had cancer--and that scares the hell out of me.

In my healing process, I've had to confront the loud voice in my head that says, It's time to get over this, Brian. You had cancer four years ago, and you are doing just fine. Stop acting like a baby. Stop being a scared, sensitive fool and move on. Besides, your cancer was nothing compared to the cancer that terrorizes little kids or that takes a woman's breasts. You just lost a little testicle; stop feeling sorry for yourself and being selfish. Get over it, man.

These thoughts are also the source of a number of "why" questions: "Why do I still feel like this? Why does this still bother me so much? Why can't I just get over it?" First, in order to answer these "why" questions and understand how I could "still" feel this way, I had to admit to myself that having cancer definitely was a terrifying, frightening, and traumatic experience. Second, I had to give myself permission to recognize that my feelings were natural considering the extent of what I endured. This was absolutely necessary in order for me to stop criticizing myself and my feelings.

Why was this so traumatic? Right from the beginning, I had it in my head that cancer meant death. I thought of my great-grandmother, who fought cancer for many years. I remembered the pain and suffering she went through and all of the weight she lost, and her slow, agonizing death. I did not think I would endure the same type of struggle, but in my mind cancer symbolized pain, agony, slow, ruthless evil, and death. I was not only fighting a disease in my body; I was fighting for the survival of my entire being.

In Illness as Metaphor Susan Sontag writes, "As long as a disease is treated as an evil, invincible predator, not just a disease, most people with cancer will indeed be demoralized by learning what disease they have. The solution is hardly to stop telling cancer patients the truth, but to rectify the conception of the disease, to de-mythicize it." Long before cancer manifested true, real, physical pain within my body, it was real and painful and terrifying in my mind. We associate cancer with horrible things like death, painful treatment, suffering, agony, poison, surgery, cutting, wasting away, invasion, tumor, killer, superstition, fear. We surround it, coat it, and protect it with these references and labels which serve as armor and make it increasingly difficult to overcome. If we remove the protective shield, it becomes merely cancer, a disease, and our odds of defeating it become much greater.

At one point I became very angry while reading Sontag's book. I thought of how I viewed cancer: as a sniper sitting in a tree firing upon people, picking them out at random and trying to destroy them. I became enraged and started to cry. I shouted the word "cancer" over and over again. "Cancer. Cancer. Cancer. Cancer. Cancer! Cancer!! CANCER!" My anger intensified, and I wept uncontrollably. A few minutes went by, and I was feeling better. I was getting the cancer out of my mind and was letting go of emotions I had been holding on to for years.

The Western medical philosophy believes in ridding the body of disease at all costs, short of ending life. The objective is purely physical. Meanwhile, emotions and the psyche of the patient are ignored. I had two great doctors, and I credit them with my survival. I look back on my treatment and see them doing all they could to get the cancer out of my body. The disease was being cured--but Brian was being put through hell, and he needed someone to help him cope with all that he was feeling. One of my doctors attempted to address my emotional concerns by talking with me about them, but the insurance company limited my visits with him.

I was physically healed, but I am not emotionally healed. When I went to the doctor the very first time, I felt fine. I was not ill. I had no aches or pains. The only problem was a lump on my testicle. Then I was told that I had cancer, and they proceeded to do all of these terribly painful things to me to rid my body of something I did not really know was there. They told me this was all needed in order to cure the disease. I was confused in a way because, since I did not feel sick, it was as if I were being deceived. All of the treatment, all of the agony and pain I went through and continue to go through mentally and emotionally was geared toward something I didn't really know was there. My treatment was far worse than any symptoms I was experiencing.

The next step was to explore what I had done with my feelings and seek them out. When I was being treated, I did what I could to show everyone that I could be strong, even though I was screaming and kicking and crying on the inside. I let my emotions show when I couldn't take it anymore, but otherwise I locked them away. The word "strong" continues to appear because I thought I was being strong. My friends, family, and medical staff reinforced this by telling me how well I was hanging in there. My mother and my doctor suggested counseling as a way to deal with the pain and fear, but I refused. It's not that bad, I remember telling them. I believed that I was doing okay dealing with this on my own. Counseling or a support group was absolutely out of the question, because either of the two would bring up feelings when I was doing everything in my power to deny their existence.

Another reason I stuffed my feelings inside was because I wanted to take it like a man. I learned early on that real men don't cry. Real men don't show their emotions. I learned these things the hard way because I am a guy who does cry. I do show what I am feeling, and I have been mocked, teased, criticized, ridiculed, and beaten up for it. The list in my mind goes on forever as to why I might be less of a man. Losing one of my nuts added to the list. I was so concerned with what other people thought of me, especially now, that I thought the best thing would be to tough it out. This was my chance to stop being a sissy and act like a man. Being strong and fighting my illness the way I did was an attempt to make people proud of me, to make me proud of me. What I learned from this experience, though, is that "acting like a man" made my life worse. Acting like a man cut me off from who I really was and made all of this so much more painful than it should have been. My healing was made harder because I knew the entire time that sooner or later the feelings I had ignored would rise and make me take notice. I postponed this moment as long as I could, in the belief that this was "manly."

Today, I can see that having cancer was a traumatic event in my life. I can see how I suppressed my feelings and refused to give them notice. I am now paying attention to those feelings, so that I may get on with my life. I still struggle with the notion of manhood, but I am trying to focus less on the man society tells me to be and more on the person I want to be.

Once I had a better understanding of my experience, I wanted to talk with other men who also had testicular cancer. I sought men out over the Internet and through my doctors. Most of the men who responded identified with the same feelings I had, but a couple of guys said it was "nothing" to them. One of them said: "I almost don't feel like the word cancer even applies to me. And I would NEVER refer to myself as a 'cancer survivor,' because I never felt my survival was in question. A guy I work with lost his nine-year-old stepdaughter to an EXTREMELY rare type of cancer. SHE had cancer. HER survival was ALWAYS in question. Testicular cancer just does not compare to that, not mine anyway." He makes a valid point. Sometimes I agree with what he said about other people's cancers being worse than mine, and it makes me feel guilty and selfish that I am still hung up over having a "delicate" type of cancer. I think where we differ is that my cancer had spread, and my survival was in question. Regardless, I have learned that I cannot change how I feel. I cannot change the fact that this was a horrible thing, and that it affected me the way it did.

Another guy said: "I agree with your sentiment that the psychological effect of suffering cancer in such a 'defining' area is often under-regarded--I get extremely tense around routine checkup time, because more than anything, I do not want to have chemotherapy again. I was first diagnosed in 1984--12 years later, I am happy, healthy, and married, but it is still hard to talk about." It meant a great deal to me to hear from these men. It makes me feel like less of a freak to know that other people have had the same experience or the same thoughts as I have had. My biggest fear is getting cancer again. I am getting to a point, though, where I am worrying about that less because I know it is out of my control.

I still have so much work to do. I am at a point now where I am less critical and more accepting of my feelings, but I need to give myself a break when it comes to feeling sad. Most of my life I have listened to "don't be a sissy." I cannot erase that overnight, but I am on my way to replacing it with "let your feelings be." I plan on further examining gender and identity roles and socialization of men and women to more thoroughly understand how that may have contributed to my anxiety and the repression of my feelings during and after my treatment. I am going to continue talking with cancer survivors and sharing stories. Finally, I will attempt to take a little time each day to reflect on and honor my feelings, whatever they may be, and I will continue to be thankful for my life.

dare to dream...

the only thing that I truly possess
is that which exists in the vast galaxies of my mind
so much like the universe in every way
it is impossible to determine
its limits or entire capabilities
as it is so diverse from all that is known

every cavern, every tunnel, every ounce of space
contains meaning, knowledge, emotion, mystery...
no one is like another
and though the process may be similar
no dream is like another

so may I dream? may I dare to dream?
to search for that which has no meaning and give it meaning
to reach into the void and discover something definite
may I dare to believe
that I will make a difference in someone
somewhere, sometime
with an extended hand, with a smile
may I dare to believe that someday
my dreams will come true?

first round of chemotherapy, July 1992

For Further Reading

Buhle, E. Loren, Jr. "Coping with Survival: Part 1." Oncolink, August 1995; accessed 11 August 1996; available from http://cancer.med.upenn.edu/psychosocial/books/buhle.

Herman, Judith Lewis, M.D. Trauma and Recovery. Basic Books, 1997.

Keeling, Wayne. "A Cancer Survivor's Story: Live the Pain, Learn the Hope." The Tree of Life, June 1976; accessed 1 September 1996; available from http://www.dmgi.com./treelife.html.

Kivel, Paul. Men's Work. Minneapolis: Hazelden, 1992.

Kubler-Ross, Elisabeth, M.D. On Death and Dying. New York: Macmillan Publishing Company, 1993.

Siegel, Bernie S., M.D. How to Live Between Office Visits: A Guide to Life, Love and Health. New York: HarperCollins Publishers, Inc., 1993.

Siegel, Bernie S., M.D. Love, Medicine & Miracles: Lessons Learned About Self-Healing from a Surgeon's Experience with Exceptional Patients. New York: Harper & Row Publishers, Inc., 1986.

Sontag, Susan. Illness as Metaphor. New York: Bantam Dell Doubleday Publishing Group, Inc., 1978.

Testicular Cancer Resource Center: http://www.acor.org/diseases/TC

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