Q & A

Amy Marcus (Wall Street Journal Reporter)

Q: How did you get involved with young people who have cancer?

A: It all started at Camp Sunshine, a camp for children with life-changing illnesses, located in Casco, Maine. I was six years old at the time of my first visit. I can’t say I really remember a thing from that visit; however, the experience planted something within me.

At thirteen years old, I went back to the camp without my parents. I remember this visit vividly. I was there for about seven days and spent each day with kids my own age who had cancer. My little world was rattled. I had never thought about depression, isolation, or death—especially not as things that kids could experience. Over that week, I became friends with kids my own age who were so different than my peers. They thought about death. Many were going through depression and isolation. And yet, they were grateful for what remained of their lives and hopeful that they could make a difference in the world with whatever time they had. Each kid I met changed my perspective on life forever.

I came home and returned to “normal” life. But I couldn’t turn my back on what I had experienced. I questioned myself over and over (and still do)—why not me? I wanted to help. And so, I decided to start writing letters to kids I met at the camp. I hoped to help the kids feel more connected to the outside world – and not feel so isolated within the hospital walls. About a year later, I formed a pen pal program called Carolyn’s Compassionate Children to continue my quest to help children battling cancer. My overall goal: help these children realize that they are not alone and have friends rooting for them.

Q: As a young person who is healthy, what were the challenges you faced in relating to the stories that people your own age shared with you who were facing a life-threatening illness?

A: At first I couldn’t relate. I thought of the world of illness as a separate universe. Unintentionally, I was probably trying to protect myself and remain somewhat naïve. But over time this protective barrier began to break down. I began to recognize more and more similarities that went beyond illness – shared fears, dreams, and worries.

It took me four years to write this book. I wrote two different versions. The first version was a sugarcoated account of the survivors’ stories. But the book didn’t feel real. My approach for the second version was very different. I no longer thought of each person as a chapter in a book. I became immersed in their lives. I no longer felt like an outsider; in fact it was almost the complete opposite – it became difficult for me to relate to young adults who had not gone through cancer. I became lonely, isolated, and depressed. It was during this time that I could relate to the people I was interviewing.

I did start out as a young, healthy person unable to relate to my peers who were facing a serious illness. If I had remained that person, this book would not have been written. So while it wasn’t cancer, I faced some pretty dark demons which allowed me to get to a place where I could personally relate to the struggles I heard about and use them as models to help me move forward in a positive direction.

Q: Do you believe that there are unique issues that people who are young face that those who get cancer later in life may not face?

A: Absolutely. I think each person faces unique issues regardless of age; however, in general, I do believe that age is an important variable when examining the cancer experience.
Younger patients experience disruption to their education—something most older adults do not deal with. They often face consequences from long absences at school, and learning difficulties from harsh cancer treatments. In high school, adolescents often question whether college is even possible because their educational background may not be up to par due to treatment and/or learning difficulties, and financial barriers from tremendous medical debt.

Normal psychological development is often interrupted by cancer treatment; for example, children and adolescents are normally becoming more autonomous. However, during treatment, they must become dependent upon others. Young adults are beginning their transition into “adulthood” from “childhood,” so regressing to a child-like state is often difficult to deal with.

In addition, readjusting socially poses problems for many young people with cancer. Despite the greater dependence on others, going through an experience like cancer makes one grow up rapidly! Becoming mature very quickly at a young age can make it hard to relate to others. For example, how does a young cancer patient respond to her peers’ constant complaints over a quiz when she is worried about the results from her latest brain scan?

The most obvious difference between younger and older people facing cancer is the years they have already lived. Many older people facing cancer are able to reflect on a life full of memories. Younger patients do not have this ability to reflect on their lives as independent human beings. There is no way to accept that an eight-year-old or twenty-year-old has had enough time to live, yet the young people I have been blessed to know over the years were able to come to terms with their situation and face their unknown future with peace and great dignity.

Q:Did the people you spoke with ever say to you, how can you really understand? You don’t have cancer, and I do. How did you respond?

A: No one has ever asked me that question.

I never pretended to understand what they had been through. I would never say, “It’s okay. I understand.” Because… I don’t understand. I can try to relate it to my own life. I have been through emotional times; for example, during my freshman year of college, I lost someone close to me to cancer. I didn’t want to open up to the people around me because I knew they didn’t understand the pain I was feeling. They hadn’t been in the hospital everyday. They hadn’t spent the little girl’s last birthday with her. They didn’t stand next to the girl’s dad as he watched his little girl slip away. So when I began to open up to others and heard, “It’s okay. I understand…” I became angry. I just wanted someone to listen to me and hand me tissues when I cried.

I treat the people I meet with cancer the same way I wanted to be treated. I don’t pretend to know more or be someone I’m not. So many people who have never experienced cancer get scared when someone else gets it. They fear what they will say to that person. How should they act? What should they do? None of that is important. Cancer is simply a disease. The person is still a person and doesn’t need to be treated differently. The most important way to show support is to be present – just be there for that person—so simple, yet many people walk away.

Q: What life lessons have you learned from the people you interviewed for this book?

A: I could write an entire book dedicated to these life lessons! In fact, a chapter in my book is entitled “Lessons Learned” and covers ten important lessons I took away from the people in the book. A few things I have learned:

• Don’t wait for a crisis to live life to the fullest.
• Time is precious so don’t put things off. If you want to do something, do it. As Benjamin Franklin says, “Dost thou love life? Then do not squander time, for that’s the stuff life is made of.”
• Never underestimate our strength as individuals. We are a lot stronger than we give ourselves credit for.
• Don’t be afraid to ask for help. It’s not a sign of weakness.
• Never forget to laugh.

Q: How do you think sharing a story can help others who are newly diagnosed? How did hearing these stories help you?

A: One word: hope. For someone newly diagnosed: never give up hope. And for me, hearing these stories helped me realize that nothing is impossible. They gave me renewed energy for life—for today.

Q: Have you done anything differently in your own life as a result of your experiences working with the people in the book?

A: My perspective on life has definitely changed. I don’t worry as much about things that are out of my control. That’s a big change for me—I used to be a hypochondriac!

Now I’m stronger and stand up for myself. I am passionate about exploring new hobbies and learning about myself. I have become more creative. I can move beyond my comfort zone. Another huge change for me: I allow others to see my weaknesses. I don’t need to be perfect all the time. Overall: Life is much more fun!