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Reflections of a Cancer Survivor/Research Scientist

some patients and survivors tell us that there is, or was, something good that came from confronting and overcoming cancer, we must work to understand that aspect of their experience as well.

this article was originally published in the Journal of the American Cancer Society, Cancer:

Zebrack, B. (2003). Reflections of a cancer survivor/research scientist. Cancer, 9 (11), 2707-2709.

 

Seventeen years ago, I was diagnosed with Hodgkin disease at age 25. At the time, the doctor told me it was curable, which was encouraging, but I remember thinking: “Yeah, but it’s still cancer,” and I was worried that I was going to be sick and sickly for the rest of my life.

For the past 17 years, I have been in full recovery and, fortunately, far from sick or sickly. I have hiked and bicycled all over the U.S. I have attended graduate school and earned my doctorate while studying cancer survivorship and quality of life. Most recently, I achieved a milestone that I thought would never happen because of the effects of chemotherapy on my fertility. I became a father.

I also have become a cancer researcher, part of an esteemed group of world-class scientists and clinicians at the David Geffen School of Medicine and Jonsson Comprehensive Cancer Center at the University of California at Los Angeles. I am fortunate to be working in an environment rich in intellectual resources and opportunities, and to have as mentors two leaders in the field: Dr. Lonnie Zeltzer and Dr. Patricia Ganz.

I often reflect on how my own experience with cancer influences my work as a scientist. As a cancer survivor who conducts cancer research, I believe that these dual roles offer a unique perspective into the impact that cancer has on the lives of patients, survivors, and their families. The images and memories of my own experience with cancer inform my work and assist in my understanding of what patients and survivors say about how cancer has affected, and often continues to affect, their lives.

I recall Thanksgiving dinner, 1985. A small lump had appeared at the base of my neck and I recall asking my father, a physician, “Dad, what’s this lump here?” Within a week I had met my oncologist, who explained to me that I would have to put my life on hold for a year while I received chemotherapy. A few days later, I was sitting on the floor of a friend’s apartment reading the Physician’s Desk Reference and learning about all the nasty things that nitrogen mustard can do to your body.

My treatment lasted almost a year,

  • I remember during that time friends driving down from the San Francisco Bay area to visit me in Los Angeles.
  • I remember throwing up while my family ate dinner in the kitchen.
  • I remember waking up one night with incredible pain shooting down my legs and my father taking me to the emergency room.
  • I remember hours spent completing Social Security disability forms and eventually appearing before a judge to argue my case.
  • I also remember wondering what happens to people who do not have parents or friends to help them.
  • I remember attending a support group and recognizing how what I had to say about my experience seemed to be helpful to others, just as what others had to say about how they were dealing with it helped me.
  • I remember my new age aunt, Tatiana Wrenfeather, taking me to see her guru.
  • Last, I remember the anticipation of my very last chemotherapy treatment, as well as the uncertainty about what my life was going to be like afterward.

Over the years I have learned that cancer is not just a disease of the body, but also an experience of an illness that affects so many aspects of a person’s life.Cancer is a horrible thing, with life-long and long-term effects that can be debilitating and limiting. As a researcher, I am committed to identifying these long-term effects for patients and their families, and determining how we may be able to limit those effects and assist people in their recovery.

Now that nearly 60% of adults and 75% of children who are diagnosed with cancer are expected to survive 5 years and longer after their diagnosis and treatment, we speak about those people in terms of being cancer survivors. How different that is from 30 years ago, when survivors were considered to be the family, friends, and loved ones left behind when someone died of cancer. The National Cancer Institute reports that more than 9 million people are now alive who have survived cancer, and approximately 1 million of them were diagnosed more than 20 years ago. In addition, approximately half a million of today’s long-term survivors were children or teenagers when they were diagnosed with cancer, and many of those young people have gone on to live vibrant, productive lives.

Unfortunately, successful cancer therapy also results in many long-term, and sometimes delayed, physical and emotional effects. One effect of great concern to survivors like myself who have been diagnosed and treated for cancer as children, adolescents, or young adults, is infertility–the inability to conceive or bear children. In my work studying the long-term effects of cancer in young adults diagnosed with and treated for malignancy as children, I have found that these young people express concerns about their ability to have a family, their ability to be good parents and to live long enough to see their children grow up, and whether their cancer puts their own children at risk for cancer.

Yet when faced with great adversity, human beings and the human spirit, can be indomitable and resilient! Witness our country’s response to the events of September 11, 2001. We have read or heard stories of people affected by the attacks including details of how those events changed their lives. Their stories suggest that in the aftermath of terror and destruction, people experience immense sadness and loss, but many of those same people also recognize that there are poignant lessons to be learned about life, or that something positive may emerge from something extraordinarily horrendous. Families come closer together. People talk about what really is important in life. This is the phoenix rising from the ashes of destruction. It is the Chinese symbol for crisis–wei ji–formed from the words danger and opportunity. It is the recognition of personal growth while at the same time acknowledging and honoring the pain and grief that continue.

People diagnosed with and treated for cancer face, and often overcome, great adversity. Many of us in the field of cancer care and research have heard people suggest that they have moved on, moved forward, and grown stronger as a result of having had cancer. Some have even said things such as “You know, I wouldn’t wish cancer on my worst enemy, BUT, something good did come of all that.”

As a cancer survivor, I know what they mean, but as a research scientist I am committed to finding out why some people say that and what conditions lead some people to feel like something good came of having had cancer. As a survivor, I do not believe this is a case of people putting on rose-colored glasses and ignoring the horrible things that have happened to them. I truly believe that I am a better, stronger person for having overcome cancer, and having had cancer has certainly provided me with opportunities that would not have been possible had I not had cancer.

Therefore, as a research scientist, I want to understand the entire impact of cancer on people’s lives. I want to understand the struggles and limitations cancer patients confront so that we can develop supportive programs and services that will alleviate problems and enhance the quality of their life, for however long they may live. Moreover, when some patients and survivors tell us that there is, or was, something good that came from confronting and overcoming cancer, we must work to understand that aspect of their experience as well. The perspective of survivors concerning how cancer has affected, and continues to affect, their lives challenges us to understand what contributes to the emergence or reemergence of hope, resiliency, and determination.

Current advances in cancer research will continue to contribute greatly to a growing number of people, young and old, being able to say I had cancer AND I survived. Meanwhile, our care for cancer patients, survivors, and their families must move ever forward in support of their efforts to be hopeful about the future and to achieve as enriching a life as is humanly possible.

 

Brad Zebrack, Ph.D., M.S.W.

Associate Professor of Social Work and Adjunct Associate Professor of Public Health

University of Michigan School of Social Work

 

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