My friends were supportive from diagnosis and were very much a part of my coping. Being around them helped me feel normal. The ones who were exceptionally supportive, the ones who visited me in Rochester immediately after diagnosis and those who visited me often, I am still very close to, despite all the changes that take place in high school. Most of my friends were very curious and asked questions like: “What exactly is it?” “When are you cured?” “Can you do everything that you used to?” I think the more they knew, the more they felt comfortable talking about it with me; and I never had any problems talking about it with them if they had questions.

On the Sunday after diagnosis, I was walking out of his room and looked up and there stood his friend, Brent, and his mother. I didn’t know his mother very well, but was so surprised that they would drive over 200 miles to see Joel for just a few minutes. Later the same day, another friend and his parents appeared. Seeing those two guys made a big difference in how Joel felt in those early days. They gave him back a sense of normalcy.

When Joel returned to school, his broader circle of friends was very supportive. They asked him to come to football games. They brought homework from school. They’d come over and watch videos when he didn’t feel like going out. They shaved his head for him when he thought his hair would fall out. (It didn’t.) They treated him like a normal ninth grader.

His friends have stood by Joel throughout treatment. They have treated him just as they would treat any other friend. There is one boy who told Joel he didn’t like to wrestle around with him because when he bumped Joel’s port, it felt “creepy.” Joel’s response: “Yeah, well, you should feel it from my side.” And then they went back to horsing around. Now that treatment is over, he still has the same strong circle of friends around him. They are now helping him to rediscover what it feels like to be 17 and not on treatment.

His experience with his friends has made him very sensitive to what it takes to be a good friend. On a college application, he was asked to list one book, song, movie, or play title that best describes him. His choice: “You’ve Got a Friend” by Carole King.

I had rhabdomyosarcoma when I was 12, right before junior high. I had to grow up real fast. It was really tough because everyone was forming their peer groups and I missed 105 days of school that year. Kids can be pretty mean and nasty when you are losing your hair. I also didn’t want my friends to suffer with me so I pushed them away. When I went back in eighth grade I had no friends. So I had to start all over again and it was tricky.

• • • • •

People lose so many friends during treatment and even later when you tell folks. You get so isolated. People have a tendency to avoid you. They are afraid. I think they think, “Oh my God, that happened to my friend, maybe it could happen to me.” I think much of the avoidance is so they won’t have to think about it.

• • • • •

I lost all my friends but one when I was diagnosed at 16 years old. She stuck with me through everything and is still my best friend. I lived in a small town and everybody knew my business. I never went to any proms and pretty much was left out of all high school activities.

• • • • •

Friendships depend a lot on how the child’s school and teacher handle the cancer. It can be an unparalleled opportunity for the school to teach many vital lessons about friendship and compassion. Sadly, many schools miss the boat. My daughter’s principal was horrified that I would dare suggest hospital personnel conduct a special assembly at the school. Few teachers knew why she wasn’t in school. When she had good days and attended, some were shocked and horrified when she took off her hat. Some of her peers and their parents thought she had AIDS and they shunned her. I finally contacted the superintendent and he set the school straight.

I explained all this to my daughter and somehow we found humor in it. She persevered and triumphed. Yes, she lost some friends, but we both believe that would have happened anyway. Those who were meant to remain lifelong friends have remained so even 7 years later.

One of my favorite songs from the musical Les Miserables is “Empty Chairs at Empty Tables,” sung by Marius, slowly recovering from his wounds from the battle at the barricades. It is so clearly the lament of a survivor. I’ve grown to understand that song more and more as I’ve lost friends to cancer: my bunkmate who, at 12, insisted that she would grow up and become the doctor who cured cancer; my beloved “big sis” who died from complications of a bone marrow transplant for recurrent Hodgkin’s in her early 30s; the spunky counselor-in-training who was my best friend as well as my trainee; the dear friend who dreamed of becoming a teacher and insisted on remaining in college even while undergoing treatment, treatment, and more treatment for recurrent Hodgkin’s; and I don’t even know where I’d begin about the younger children I’ve known.

One thing that I think is important to realize is how double-edged grief can be for us. For me, it’s the obvious pain of losing a beloved companion and confidant...but there’s also the part of me that fears I’m next, and the part that feels guilty for even thinking such a thing. One of the most difficult aspects, though, has been survivor guilt—a sense that somehow I don’t deserve to be alive when so many wonderful people close to me have died. Marius’ “Oh, my friends, my friends, forgive me/That I live and you are gone/There’s a grief that can’t be spoken/There’s a pain goes on and on...” truly sums this up best. But I try to remember that it wasn’t my decision, and that my friends would not want me to become despondent.

Near the close of the song, Marius bursts into, “Oh, my friends, my friends, don’t ask me/What your sacrifice was for...” That’s exactly my feeling, and exactly my reason to go on living and try to live well. What is the point of all the empty chairs at my table? What was the reason that I buried two maids of honor before my wedding? Why has half of the Sunflowers cabin—my girls, my counselors-in-training—died in the 5 years since that year of camp? I don’t know.

When I got to high school I realized that people will always be the way that they are, and because I am blind, I will always need to overcome barriers. So I decided to take it on myself. I go out of my way to start conversations, and it’s tough. But sometimes you just have to take chances and smile and say hi.

• • • • •

After my diagnosis of leukemia (ALL), I was tutored at home for my entire eighth grade year. My junior high went from seventh through ninth grade. One of the most difficult things about being on treatment was that all the people I hung out with and claimed as friends were too afraid to talk with me when I came back. They would walk past me in the hall and not even acknowledge me. Maybe they didn’t recognize me. Before, I had long hair, a great figure, and was very athletic, and when I returned I was overweight and I only had a dusting of hair. Only one friend from school ever came to visit me in the hospital. When I went back in ninth grade, the teachers were incredibly supportive, but dealing with friends was very, very difficult. I just started hanging out with a new group of friends. By high school, there was nothing noticeably wrong, so I made lots of new friends.

• • • • •

I had bilateral retinoblastoma when I was 2½. They had to remove both eyes, so I’m totally blind. I am an athlete, and have been involved in several sports. Right now I’m into mountain biking. I use a tandem bike—I’m in the back (called the stoker) and have a pilot in the front. It’s really a liberating experience and I find it to be a wonderful icebreaker. It’s a great way to get out in the community and meet people with similar interests. It also promotes disability awareness and hopefully gets people involved. But whether you have a disability or not, athletics is rewarding to anyone who is involved.

My daughter was diagnosed with AML (acute myelogenous leukemia) in sixth grade, and the people in the school system were concerned but awkward about what to do. There was not much support from the faculty, and her peers followed the teachers’ leads. We did a lot of things to try to keep her connected so that when she was well enough she could easily rejoin her group. We did a presentation with her class to help them understand and prepare them. We also filled up picture books with happy pictures of her daily life. For instance, we took pictures of the hospital school, the playroom, bingo games, her with her gifts. The hospital was an hour away so it was not easy for the kids to drop by to keep in touch. She missed all of sixth grade.

She was able to start seventh grade and play on the school softball team, and she made tryouts for the basketball team. She was accepted pretty much back into her group, but then she relapsed. The seventh grade was at the junior high and had a different faculty and principal, and they were great. The teachers all came to visit her. They encouraged the kids to write notes and set up a mini-mailbox in the office for the kids to drop their notes or cards in to be delivered. We were stunned to have so many visitors. She didn’t get back to school until eighth grade. The aseptic necrosis in her legs made it impossible to play sports. The kids were really nice to her, but by now they had new social groups that didn’t include her.

The kids included her after each episode of sickness. But by eighth grade they were a bit scared. She told me one day that she thought the kids were thinking she might die. She said, “Nobody likes me, I don’t fit in, I’m not part of the group.” But we encouraged her to do what she could—she participated in a scholastic bowl, speech teams, math teams, and a school play, managed the softball team, and had tutoring by teachers during their free periods. She’s also a talented pianist. I think she’s going to blossom this year in high school because there are a lot of musical opportunities.

You know, it’s tricky starting new relationships when you have a health problem because you know it might happen again. I have a hereditary cancer and it could happen again. I don’t think about it often, but it does lurk in the back of my mind. I really love my friends and don’t want them to suffer. But I realize it’s not fair to my friends to push them away. My friends are very important to me.

I’m in college now and I still feel older than everyone else. I’ve faced life and death, and I just don’t relate to what they are interested in doing, like drinking and partying. They seem so immature and my mind frame is so different. I feel like the oldest woman on the planet.

• • • • •

It’s been over 20 years since I had cancer. And the older I get, the more I realize what’s really important in life. Believe me, I’ll take the wrinkles to get the wisdom any day. So many of my friends just talk about decorating their homes, their haircuts, and the latest fashions. I feel like the cancer helped me evolve more. It made me less interested in the superficial and made it harder to relate to the petty stuff. Not to sound like I’m better than anyone else, but I just think there’s a whole lot more to life—a life that is more meaningful, deeper, and different from what I imagined it would be before I had cancer.

• • • • •

I used to be very social and now I’m afraid of people. I thought after the chemotherapy everything would be normal again, but I found I still wanted to be by myself. I used to be into how I looked and what was cool. Now I know it’s what’s on the inside that counts.

• • • • •

I was diagnosed with ALL in 1972 when I was 15. I felt like I was fast-tracked into adulthood. My peers became adults and most of the kids I knew in the hospital died. I missed a lot of school and didn’t develop normal peer relationships. I became more mature, more serious. I just didn’t horse around anymore. I was different from my peers and couldn’t make that up. I gained a lot, though. I gravitated toward serious, goal-oriented, genuine people in college. I had a normal social life and am happily married.

My daughter really likes people. But she has an apathy about relationships and interests that makes it hard to make and keep friends. She’s only 4’7” so new people she meets automatically know that there is some health history. She was really shy and embarrassed about her height in high school, but she’s matured now and is less bothered by it.

• • • • •

In grade school I was kind of an outcast. I don’t think people avoided me because of the cancer, rather I think I felt awkward and unsure about how to be accepted. I had a really wonderful friend in grade school. Every year the popular group would shun one of the girls. So we would make a clique of the unpopular girls—we pulled everyone in. I’m now 28 and we are still best friends. We recently talked about it, and I realize how much she helped me deal with the horrible things that went on in school. She knew I was fragile and she really looked out for me. It was very powerful for me to realize how much she helped me.

My daughter had cranial radiation for her relapsed ALL. She has big social problems at school. The other kids don’t know what to make of her. She says whatever she thinks, whether it hurts someone’s feelings or not. We have always thought that it was because she lost so many years of her childhood being sick and primarily interacting with adults. But the more I learn about radiation, the more I think that may be the culprit.

• • • • •

My daughter was irradiated at age 4 and she really has trouble with games. The rules just change too fast for her to keep up with, so she’s always left behind by the kids on the playground. Even though the kids like her and help her, she just can’t figure it out. I think the social disabilities are worse than the academic disabilities. With academics, you can learn to compensate for the weak areas. But you can’t memorize how to react to the world. Academic disabilities are accommodated in the schools—modified to the child’s strengths and weaknesses. But social disabilities are judged by your peers. And they are tougher judges than adults.

I was diagnosed with cancer when I was 16. Back then I was a cheerleader, very attractive, very popular. I guess you could say I was one of the cool kids. I was very busy and had lots of friends. I was also judgmental and snobby. What pointless stuff I was interested in. But after the diagnosis I became an outsider. All of my friends disappeared. I dropped out of school and was tutored during chemotherapy and when recuperating from my surgery. So I never really entered back into the high school scene. I just couldn’t relate to them anymore. But I did become very, very close to five other teenagers on treatment for cancer. Four of us are in college and one’s in high school. We all survived and are the best of friends. I talk to them all the time. Even our parents are close.

• • • • •

I’ve been involved in young adult support groups for years. I’m starting to have some mixed feelings. Just because of our shared experiences, they tend to be really nice and sensitive people. You only socialize with people you know, so if you use these groups as your only social outlet, it’s not a good thing. I think you should use those groups to build skills, then move on. Or at least branch out and develop other friendships, too.

I was treated for ALL from ages 12 to 14. Dating was a very big issue for me. I didn’t really date until I’d been in college for a couple of years. In high school, when dances came around I always wondered who I would go with. I had lots of really good male friends, but no boyfriends. It seemed to never go past friendship and I was pretty traumatized by it. But my mother and I decided that they were intimidated because I did so well in athletics and schoolwork, and I had cancer. The combination was just too much.

• • • • •

After completing my treatment for cancer, I fell for the first loser who came along. My hair was still short and he told me I was beautiful. I look back now and can find nothing attractive about him, but at the time he said what I wanted and needed to hear. He made me feel good. He had no job, no prospects, and no plans. Then I got pregnant and realized from his reaction after the twins were born that he was bad news. I kicked him out and it was the best decision I ever made. I decided after getting rid of the loser that I didn’t want a family like the one I grew up in—alcoholism, smoking, abuse.

I met the man I eventually married shortly after that. He loved my babies and he loved me. He had grown up in a very stable, loving home and has been wonderful to us. He’s a sweet man and a great dad. We’ve been married for 6 years and have four kids.

• • • • •

I was treated for cancer during high school. Everybody knew about it, but it wasn’t a big deal to them. It never posed a problem with dating other than I was mature beyond my years and attracted to interesting, genuine people. I just seemed to miss the party-and-be-crazy stage.

Before I was sick I had long hair and I looked good. I based a lot of how I felt about myself on my looks and how people reacted to them. On chemo, I lost my hair, eyebrows, and lots of weight, especially in my face. I looked really horrible. I hid a lot. I wore wigs and penciled in eyebrows, but I still felt bad about my looks. People would stare, whisper, and point. I became very afraid of people. It’s been years, and to this day I have a problem with people looking at me. I know there is nothing wrong with the way I look, but subconsciously I still think I look weird. I feel panicky if someone looks directly at me. I just can’t get over the feeling.

• • • • •

I think there are lots of reasons some of us aren’t comfortable with our scars and don’t “wear them with pride” like the Nike ^® commercial. I don’t disclose my cancer history to co-workers, so having scars can bring questions and difficult answers. Many of us want to “feel normal.” We grow back the hair, we lose the “moony-face,” we grow back the eyebrows, and we want to look like our old selves—like a regular face in the crowd. The scars stick around.

I think we all go through different phases with our cancer—needing to talk about it, needing to not talk about it, being proud of our survival, wanting to forget it ever happened, etc. The scars are constant reminders of what we’ve been through. Sometimes that is a good thing; sometimes it’s a reminder you don’t want.

I feel fine about the way I look now. It was hard being a guy and wearing a wig in high school. But as soon as I had a little hair, I stopped wearing the wig. That was in ninth grade and no one was dating then anyway. I was into academics and athletics. But when I started dating, everyone knew, but it wasn’t a problem.

My oncologist has children my age (late teens) and he treats me like one of his kids. If I tried to talk to him about sex he would probably fall off his chair and faint. He has never asked me a thing about it. My hormone levels are wacky and it affects my moods. My sex drive has completely disappeared; I don’t know how my boyfriend puts up with me. I think I’ve been so poked and prodded that I just don’t want to be touched anymore. I don’t mind hugs, but don’t want anyone near any of my lymph nodes. I’m embarrassed about all of my scars. All of this together makes it really hard to have a decent sex life.

• • • • •

For many, many years I had a terrible nightmare following treatment. I would dream that I was sound asleep in my bed at home and then I would hear the smallest noise and know that someone was breaking into my house. I would then wake up in terror and be unable to go back to sleep because the dream felt so real. I was always sure someone was indeed breaking into my house. I no longer have this dream, but it took some years of seeing a psychoanalyst to figure out what this dream was about and why it troubled me so much.

I love my home and am very much a homebody. I like making my house nice, comfortable, and welcoming. I do with my home what I hope I do with myself: be warm, welcoming, and comfortable. So I came to understand that the house stood for myself. That in this dream I am the house and the house is me. In the dream something very bad and scary happens to the house/me. The house/me is broken into. I had my first surgical procedure when I was 10 years old, an appendectomy. My house was broken into. And at the time of the surgery I was very ill and very scared. Since that first surgery I have had seven more surgical procedures with general anesthesia and numerous invasive procedures. All of these came to constitute multiple experiences of having my body broken into.

I think if it just ended there, I would have recovered very quickly from these nightmares and gone on about my business. But during my analysis, I discovered that I had in my mind a fear of being broken into sexually. That is a place that I didn’t want to know very much about. I was scared of sex and scared of what men do to women sexually. Now, I am an educated woman (I had even been married before), and that seemed very silly—a silly notion and silly that I would find that some part of me was scared of sex. But the more I knew about it the more it began to make sense. And when I started knowing more about this fear from both perspectives, being broken into physically by medical procedures and sexually, the dream stopped and I stopped pushing away all of the eligible men who wanted to date me.

The final outcome was that even though I am considerably overweight, and not young, I married a wonderful man. And enjoy a wonderful sexual relationship with him.

I started dating my first boyfriend when I was 16—a few months after I finished my treatment for Hodgkin’s. I was still wearing a wig, and he talked me into taking it off. He told me he thought I was pretty without it. I felt ugly and bald until he said that. He liked to run his fingers through the little bit of hair that I had. It was the sexiest thing and it meant the world to me.

I had non-Hodgkin’s lymphoma and have two fairly noticeable scars—one on my neck and one that’s about 5 inches long on my upper arm. Whenever I wear sleeveless tops, I get asked about it. I either say “It’s from surgery” or “It’s from when I had cancer.” What I say depends on what my relationship is with that person. For a long time, I felt uncomfortable about them and I covered them up. But it’s been years now, so I’m not quite as bothered by it.

• • • • •

I developed a secondary breast cancer when I was in my late 20s and had a mastectomy. I wanted to have a reconstruction and implants, but the surgeon said it would be a 10-hour surgery and insurance wouldn’t pay for it. I can’t pay out of pocket for it, so I use a prosthesis. It really affects what I can wear. If I put on a sleeveless dress or one that is a tiny bit low in front, the prosthesis shows. I really hate it.

• • • • •

I am in a wheelchair and am small. People stare at me and some think I’m stupid. If I am in a store trying to buy stuff, they will ask my mom, “Oh, can she sign her name?” It bothers me that they talk to her and not me.

I was beginning to feel like myself again 3 years after treatment for cancer when I went on my first date since diagnosis. I met my date at the beach and we went on a long bike ride. I had a great time and it sure seemed as though she had a great time too, until the word cancer came up. We were talking about what we had been doing recently and because I am not ashamed of having cancer, I told her, and wow, was she shocked. Her whole attitude changed and I have called her twice since and she has not called me back.

Of course I realize that she might not be calling me back because she simply didn’t like me, but I can tell when a girl is interested in me and she was. I totally freaked her out by telling her I had cancer.

People are afraid of what they don’t understand. I am still the same person I was, I have nothing to be ashamed of. Actually, I am very proud of myself for enduring the treatment, and other people should be proud of me too, but they are not. They are afraid of getting close to me because they are afraid I will get sick again. Even though I am 3½ years in remission and my prognosis is excellent, I can understand how people would feel that way—it is a possibility.

The best plan is to let a person get to know you really well before you spring the notion of the cancer on them. Hopefully by that time they will love you enough not to care. When I go on another date and someone asks me how I got my scars, I’m going to answer, “A motorcycle accident!”

• • • • •

In my freshman year of college, I met a man I just adored. He was a gorgeous, blond composer. I had a major crush. He was in the same choir I was and loved all of the same things I did. He was very interested in me and we started to date. In English class, the first assignment was writing an essay about a personal experience. I wrote about having had cancer. The teacher made us read them aloud. After hearing that, the fellow I had a crush on cooled it immediately. I went to my support group and just started to cry. The social worker suggested that I try to talk to him about it. So I was talking to him about things in general (no mention of cancer), and when I put my hand out to touch him on the arm he jerked back. I didn’t think people did that kind of thing anymore. It still hurts to think about it.

• • • • •

I met my fiancée at a camp for kids with cancer. We are both cancer survivors so there was never any issue about disclosure. We were both up-front from the very beginning and shared our stories.

Disclosure is not much of an issue for me. I either use a cane or a guide dog to get around, so it’s pretty obvious I’m blind. Although my eye prostheses look natural, one eye droops a little bit from the radiation. Little kids do ask me what happened to my eye. I’m really open about my cancer history, which helps make other people comfortable with it too. When I had the rhabdomyosarcoma, they removed part of my jaw and a muscle there. However, I have long curly hair and I have it cut in such a way that it covers it up. Now if I pull it back, it bothers my mom, but other people tell me it’s not that noticeable.

• • • • •

I had a brain tumor and am in a wheelchair. Kids stare at me a lot. Adults assume I was in a car accident because of the wheelchair and my bent leg. If anyone asks me why I am in the wheelchair I say, “Oh, I had a disease, so I can’t walk.” Sometimes I tell the whole story depending on how I feel.

• • • • •

I had a leg amputated when I was young and use crutches. Sometimes I feel like I’m on display. I don’t mind using the crutches, but I wish I didn’t need them. Other times, I don’t mind talking about it. It’s pretty obvious that something is different—I only have one leg! It’s often a conversation opener. They ask what happened and I say, “Oh, I had cancer when I was a kid.” That’s how I’ve started conversations with most of the women I’ve dated. Everyone knows someone with cancer—a mother, a cousin, a neighbor. So we instantly have something in common. I really have no choice about disclosure.

I’m very short and young-looking as a result of my cancer treatment. As a man, my appearance is a real impediment to having relationships. I really would like to get married. There is also the possibility I may be infertile, but I don’t want to be tested. I just don’t want to deal with it prior to a commitment; I’d rather figure it out together.

I was treated for osteosarcoma during my dating prime—ages 16 to 18. I never dated. I rationalized it by thinking I didn’t want to put anyone in the position of having to deal with my cancer. The truth was that I felt too ugly to date and my self-esteem was very low. My first year in college I decided not to tell anyone. Since I have a big scar on my leg, I made up various stories to explain. I tried to make the stories fun...I was attacked by a shark, fell off a Ferris wheel, was in a motorcycle accident. I thought if I told them the truth, they would desert me like all of my high school friends had. I didn’t want to go through 4 years of college alone.

By my second year, I felt comfortable enough to tell the truth, but I downplayed it. For instance, if someone looked shocked and said, “I’m so sorry,” I’d say, “Oh, it happened a long time ago. Don’t worry about it.” Then I’d change the subject. I wanted people to know, but not to dwell on it or feel sorry for me.

Talking about cancer isn’t a big issue for me. I had ALL and everybody knows it. Other than the fact that the experience changed me and made me who I am today, there are no outward signs. At a certain point in relationships I make a point to let the person know, because it was a huge part of my life. My life is normal and good.

My fiancé and I both had cancer. We deal with it very differently. He doesn’t get worked up about it—when it’s over, it’s over. But the nice thing is that he understands that I deal with it differently. I have to remind him about how upset I get around diagnosis and anniversaries. I had to learn how to tell him what I need. It took a while to get used to that. But we really think alike on most things, and respect our differences on the others.

I am a member of several Internet support groups. I believe in facing the future squarely, even though it is scary sometimes. I really like to help people and share stories. It’s my way of giving back.

• • • • •

I had bilateral retinoblastoma when I was 2 and am blind. When I first got access to the Web my senior year in college, I started looking around for information on retinoblastoma and only found clinical and treatment facts. Nothing on psychosocial or emotional issues. From firsthand experience I knew about some long-term effects and realized that people really need to know these things. I didn’t know other survivors, so I started an Internet discussion group with the help of Gilles Frydman, the founder of the Association of Cancer Online Resources, Inc. (ACOR: www.acor.org). We started with very few people, most of us in our 20s, 30s and 40s. It was neat when it branched out to include parents of newly diagnosed kids. It’s gone global now.