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Childhood Cancer Survivors


Survivors...often find that the illness and its treatment changed their lives in many powerful, and often positive, ways.


[Y]ou need to collect information about your treatment and then assemble a team to help chart your medical course.


As time goes by, your feelings about the experience may change.


I want to be a survivor. I just want to be Andrea as well.


We choose life and not what might come with the future....I don't waste time regretting the decisions that my parents and I made in 1972.

Survivorship


The following excerpt is taken from Chapter 1 of Childhood Cancer Survivors: A Practical Guide to Your Future by Nancy Keene, Wendy Hobbie & Kathy Ruccione, copyright 2000 by O'Reilly & Associates, Inc. For book orders/information, call (800) 998-9938. Permission is granted to print and distribute this excerpt for noncommercial use as long as the above source is included. The information in this article is meant to educate and should not be used as an alternative for professional medical care.

Three-quarters of the 12,400 children and adolescents (under age 20) diagnosed each year with childhood cancer can now be cured. Survivors of childhood cancer often find that the illness and its treatment changed their lives in many powerful, and often positive, ways. There is much to celebrate.

However, long-term survivors of childhood cancer face an uncertain future. The surgery, radiation, and chemotherapy used to cure children sometimes affect growing bodies and developing minds. In addition, some survivors encounter job discrimination, difficulties obtaining insurance, and emotional or social upheavals. During your journey through the many phases of survivorship, you may find yourself educating your family, friends, and healthcare providers about your own physical, psychological, and social responses to treatment and its aftereffects. Knowing about your disease, its treatment, and potential late effects will help you advocate for the care you need to maximize your health and well-being.

This article discusses some of the many facets of survivorship. It covers two major times of transition: going from on treatment to off treatment, and from childhood to adulthood. To take charge of your health, you need to collect information about your treatment and then assemble a team to help chart your medical course. This article discusses ways to find the best healthcare providers for your special needs.

Survivorship

You are part of a growing community of children, teenagers, and adult survivors of childhood cancer who are pioneers in the post-treatment journey into adulthood. In the months and years after treatment ends, you may encounter unexpected benefits, physical late effects, and possibly emotional upheaval. Your journey may be easy or hard. It may take surprising turns and dips, and reach dizzying heights. Although thousands of others are making the same journey, your path is unique.

I'm a long-term survivor of Hodgkin's disease. I think you have to recognize the cancer as part of your history, absorb it into yourself, and hopefully grab some of the good things it has given you--a feistiness, a capacity for great compassion. You also have to be able to not let it overwhelm you with fear and anxiety so that it's all you can think about. How do you walk this line? If you don't think about it and don't let yourself be identified as a cancer survivor, then you can't protect yourself if you go in with late effects. You have to be able to say, "I may only be 28 years old, but I had radiation to my chest when I was 15 and I'm at risk for heart disease now." But then, you also don't want to become so obsessed that you start to define yourself as a cancer patient rather than a person who just happened to have had cancer. It's sometimes hard to strike that balance.

Life for all people is sometimes rocky and sometimes smooth. Being a survivor may add a few unexpected stones or may pave the way to new opportunities. Many survivors talk about how cancer opened their eyes and left them with an appreciation for life. They are able to shake off the small stuff and focus on the important things in their lives. They feel as if the cancer gave them perspective, and that this is a great gift. Others feel as if it was one small part of their life and they prefer not to think about it. As time goes by, your feelings about the experience may change.

We are all walking down the same path, but we are at different places on it. The first few months after treatment, I had a deep feeling of gratitude for every day that I was alive. I did reach a point, however, when I had to let myself be thoroughly pissed off at the trauma from the diagnosis, treatment, and recovery. I am coming to realize that these negative thoughts are normal, and are due us from time to time. I am learning to walk the middle of the road, to not be such a perfectionist. That is coming with time. I have been on the elated end of the spectrum and I have also spent many days in the basement of life ( generally while returning to "normal life" post-treatment). It is a humbling, enlightening, lively experience.

•  •  •  •  •  

I think that everyone should try to learn from every experience in their life. But being a survivor is not the whole part of my being. I am also a student, a teacher, a daughter, a granddaughter, a girlfriend, a visionary, a historian, and a sugar addict (among many other things). But sometimes people see you as just a survivor and nothing else. I want to be a survivor. I just want to be Andrea as well.

I prefer to think of my "stigma" as a stigmata. A painful blessing, but an eye-opening and life-changing blessing.

•  •  •  •  •  

I've never really dealt with having cancer. I really didn't want to think about it. I felt like it was a defense mechanism because I didn't have the physical energy to deal with it. I went to a support group meeting once and felt like it was getting thrown in my face when I just wanted to forget. I feel bad sometimes because I think I should be giving back in some way, but I'm just not strong enough.

•  •  •  •  •  

I had a brain tumor when I was 10. I'm pretty short (4'6") and skinny. I'm in a wheelchair. I can feel my lower body, but I can't walk. Sometimes it bothers me. It was bad enough to have cancer, but then to be in a wheelchair too. I used to love to dance and I can't do that anymore. It's hard when I go to weddings. But my dad always told me to have a positive attitude. He said it could always be worse--I could be in bed all of the time. So basically I have a positive attitude and think good things can come out of it.

•  •  •  •  •  

I had leukemia when I was 15, over 20 years ago. I feel like it put me on a fast track and that I missed a lot, but I gained a lot too. I missed quite a bit of high school and lost lots of friends. I became very serious and matured quickly. I had different interests and just didn't communicate the same as the high school kids. But I graduated, went to college and graduate school. I made friends with people who are goal-oriented but relaxed. I have a wonderful wife, three healthy kids (19 months apart--no fertility problems there!) and lots of good friends. I have a sense for how fragile life is and I make the most of it.

Part of surviving childhood cancer is dealing with and educating medical personnel, family, friends, and loved ones about the medical and emotional aspects of survivorship. You may find that family members want to pretend that it never happened. You may be told to put it all behind you. Or you may find people treating you as if you are a fragile piece of glass. Deciding what parts of your cancer history to explain and what parts to ignore may take some reflection, and will certainly involve planning how to communicate your thoughts and needs to loved ones.

I have had so many people say to me, "Why don't you put it behind you and get on with your life? You're done with that now." Am I? Am I really done with that? You're going to tell me I'm done with that when every day of my life when I'm getting dressed I have to look at that laparotomy scar. I have to take all kinds of pills daily. I need to prevent and immediately treat infections because I don't have a spleen. The radiation killed my thyroid. If I get the flu, it might just be the flu, but we have to treat it with aggressive antibiotics and supportive therapy because it could be a lethal post-splenectomy infection, and those kill within hours. Pretty hard to ignore.

•  •  •  •  •  

Is the cup half empty or half full? I fully believe it is half full. I live each day thankful that my son is here, thankful that there is a treatment for his cancer, because if this were the year 1949 instead of 1999, he would be dead. This is so scary, it always makes my heart skip a beat and my eyes tear and my mouth go dry. And it makes me go in the next room to look at him, to make him smile, to run my eyes over this marvel that is him. And it makes me wonder why any of us are alive, so I think of things that are beautiful as I go through my day: my lovely chaotic daughter, my clowning stable husband, my furry soft cat, my old and very sweet dog, my young and full-of-life puppy, the cool-looking clouds in the sky, the way the bare branches of the trees are outlined against the pink sky at sunset or the pale blue winter day sky, the sound of my favorite songs, the feel of my sweat and my muscles when I work out, the warm shower and good-smelling soap, fresh bread coming out of the oven, the banter of my family as we gather in the living room before dinner.

And in an odd way I am thankful that something woke me up to the wonder that is life, I am only so sad and angry that that something was cancer.

•  •  •  •  •  

We choose life and not what might come with the future. Even though I'm currently disabled by the late effects of treatment, I don't waste time regretting the decisions that my parents and I made in 1972. We made the best informed decision at the time and for most of the 28 years post-treatment I've been very healthy.

•  •  •  •  •  

My 8-year-old daughter Katherine is more than five years out from a bone marrow transplant. She had juvenile chronic myelogenous leukemia. She has some very manageable long-term effects from total body radiation (cataracts, subtle learning disabilities, sterility). For the most part she is a normal, happy, active girl who along with her brothers is the joy of my life.

•  •  •  •  •  

I have been told many times that I had a "good" cancer; one doctor even went so far as to say my cancer was a "cupcake." No cancer is a good cancer, and no treatment is without its harmful effects. But in my mind having a "good" cancer meant that the treatment couldn't have been so very bad and certainly that it didn't carry any long-term risks. Since I wanted to believe, needed to believe that I had emerged unscathed, I blithely went along with this version of reality. Trying to make light of cancer by calling one or another of the curable cancers a "good" cancer does a disservice to me and my physicians. It disarms us in the face of potential late effects and makes us less effective in monitoring our health.


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