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Healing emotionally: my continuing struggle as a cancer survivor

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The summer of 1992 significantly changed my life. When I was 21, I found a lump on my right testicle that turned out 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 to admit that. I thought it would be weak of me to acknowledge my fears, but I realize that I have never been stronger. This is an excerpt of the paper I wrote for my senior project. It serves as 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 is the culmination of months of reflection, discussion, and research.

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 and 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 the time being because I refused to believe or acknowledge that negative feelings existed. I simply ignored my emotions, and for four years, I have continued to reject the notion that I have unresolved feelings, even though they 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 me. The work I have done for this project has made this clear to me and has made it possible for me to begin the healing process.

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 everyday 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 four years ago 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. 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.

My senior project has been an attempt to identify what I feel and why I still have these feelings. There is a 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 stop being selfish. Get over it, man.” These thoughts are the source of the “why” questions I mentioned earlier. “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. She died a 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.

Susan Sontag’s Illness as Metaphor explores the historical myths surrounding disease and explains current myths still revolving around cancer. She says, “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” (Sontag 07). Therefore, 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, and others. In essence, 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 cancer, a disease, and our odds of defeating it become much greater. Once, I became very angry while reading her book. I thought of how I viewed cancer when I was told I had it, and how I continue to look at it today. I think of it as a sniper sitting in a tree firing upon people. Cancer picks people out at random, and tries 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 onto for years.

Another important factor in how cancer impacted me was the way the disease is treated. The Western medical philosophy believes in ridding the body of disease at all cost 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 do 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. Elisabeth Kubler-Ross, in her book On Death and Dying, investigates the western medical tradition and points out the lack of care for the person. Her book was important in helping me identify this particular aspect of my emotional problem. She writes: “...the patient is suffering more-not physically, perhaps, but emotionally. And his needs have not changed over the centuries, only our ability to gratify them” (Kubler-Ross 09). This is an example of what I mentioned previously: I was physically healed, but I am not emotionally healed. Another important discovery I made while reading this book indirectly assisted me in determining why I might still be so afraid. 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, as I mentioned before, I did not feel sick, so it was almost as if I felt I was being deceived. All of the treatment, all of the agony and pain that I went through and continue to go through mentally and emotionally was geared toward something I didn’t REALLY know was there. Would I feel differently about my situation today if I had been in great pain before I went to the doctor, or if my testicle had been swollen and I had become ill? That is a question that remains unanswered. If I had the answer, I might feel more positive about the treatment. It is much different if one goes to the doctor with a horrible cough or a broken arm or something where there is an obvious need for medical care. The doctor prescribes antibiotics or sets the bone, puts it in a cast, and all is well. That was not so in my situation. My treatment was far worse than any symptoms I was experiencing. I am not suggesting that my doctors should have waited until my cancer metastasized before treating me. I am only pointing out the difficulty I had in accepting my treatment as something that was good for me, because I did not feel ill.

I have shared what I discovered about the way I was affected by having cancer, and I have partially explained why it continues to be a problem in my life. 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 any more, 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 feelings up when I was doing everything in my power to deny the fact that they existed.

Another reason I stuffed my feelings inside of me was because I wanted to take it like a man. I learned 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 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. Given all I have learned, I continue to equate masculinity with being cut off from emotion. It has been extremely hard for me to complete this project because I have known the entire time that sooner or later the feelings I had ignored would rise and make me take notice. One of the ways I have always been able to get in touch with my feelings is through poetry. I would like to share the poem I wrote about chemotherapy because it had been locked away, too.

 

POISON

The poison in my veins is driving me insane.

there is no escaping three o’clock head aching

how much pain? how much pain?

How Much Fucking Pain!?

my body starts to smell. I feel like I’m in hell

so many needles in my arm, a couple more will do no harm

another vein has burst - no, it’s not the first

“time to get the nurse, mom”

sores eat into my gums. I didn’t know these would come

now I can not eat! there is no way to cheat

I must look it in the face and let it completely erase

all notions of who I am.

I will never be the same.

I will never be the same.                                                        

August 1996        

 

The first two lines of this poem have been in my head for most of the last four years, but I could not get any farther than that. I was not ready to deal with the emotions that would arise from bringing back the memory. The work I have been doing on the project has forced me look at mySelf and my feelings, and finally, I completed the poem. It took a lot of tears to get through this because extremely painful images accompany the words. Having done so, I feel release. I feel closer to getting all of this out me. 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 as I have, 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. Oftentimes, 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 an area 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. One of the most important things I have been able to identify from doing this project is that if I continue to deny my feelings, I am going to be dealing with them for a long time. Once I face them and feel them, I can let them go, and then I can get on with my life.

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...Twelve 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. Besides, I could be worrying about it while crossing the street and get hit by a car.

The final step in the project was preparing for the class presentation. This was as hard as any other aspect of the project. It was the culmination of all the work I have done in the past six months, and it required me to face everything that I had been avoiding for so long. Preparing for the presentation forced me to admit that I had locked up my emotions and that I was terrified. Until the days leading up to the presentation, I kept all of my findings separate because I thought looking at everything put together would be too painful. As a matter of fact, this entire project has been like that. I am happy to be doing this inner work, but at the same time, I have resisted doing it because of the fear, sadness, and discomfort I knew I would feel. Although I have been able to release many of the bottled up feelings I have been talking about, getting to the point where I will completely allow myself that luxury has been rough.

I was not worried about what the people in my class would think of me, or how they would take the information I was going to share with them. They were a great group of people. One problem that kept nagging me was feeling like I needed to apologize for crying. It was not that I was embarrassed about crying in front of a group of people - I have done that many times before - but I would not want anyone to feel uncomfortable. It was the same problem as when I had cancer: I felt helpless and powerless and I didn’t want to burden people with taking care of me. With my advisor’s help, I have begun to realize that I have to stop caring so much about everyone else’s feelings and concentrate on my own.

I was pleased with the presentation. I thought all of the segments flowed together very well. My classmates were supportive, as I figured they would be, and I was comfortable except for the emotions that came up as a result of revealing what I had concealed for so long. I made no efforts to hold back my tears, nor did I feel badly for allowing myself that freedom. It was good having my mother and my wife there to share this experience with me. They have been there in plenty of bad times, and I wanted them to be able to see how far I have come in making myself well again. I wanted them to be proud of my emotional strength this time.

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 in six months, 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 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?

 

Þ  first round of chemotherapy, July 1992

 

 

Reading List

·      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 ofLife. June 1976; accessed 1 September, 1996; available from http://www.dmgi.com./treelife.html.

·      Kivel, Paul. Men’s Work. Minnesota: 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 aSurgeon’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