Adult Survivors of Childhood Cancer

Recorded January 31, 2002

Welcome and Participant Introductions

Michael:
Hello, and welcome to the American Cancer Society's Cancer Survivors Network. I'm Michael Samuelson, your host, and today I'll be talking to two cancer survivors, adults whose experience with cancer happened when they were children. Now, as a cancer survivor myself and a partner with the National Dialog on Cancer [Editor's note: http://www.ndoc.org/], I am pleased to be your host for today's conversation.

What we're going to do today is we're going to talk about a number of things, and I am very excited to get going with this. We are going to talk about the social challenges encountered by survivors during childhood and adolescence. What it's like to be a kid, a little kid, and to be a teenager with cancer. We're also going to talk about concerns associated with conceiving or fathering a child later on, having known that you were indeed a kid with cancer. We'll talk about where to go and what do you do when you feel the need for support. Are there groups for survivors of childhood cancer and what do our guests say about them? Also sharing experiences, again, this is not, it's not like having cancer as an adult, and there are all kinds of different survivor's groups for you.

We'll talk about, in addition to interview forums like this one, how do our guests share their experiences, and why do they share, and what are the pluses and minuses of doing so? I think also, and this is what intrigues me is to find out the impact of childhood cancer on your adult relationships. What have you carried with you from going through cancer when you were small, and the real and perceived health risks that come with being a survivor of childhood cancer? Everyone thinks in terms of recurrence, but you have been able, or you have been subjected to situations where you've been thinking about this for a number of years. So, we've got a lot of things to talk about, but first let me go ahead and introduce our guests.

We've got Joe, 40, from Texas, and we've got Debbie with us, 35, from Vermont. And let me give you a little bit of information about our guests as we go into this. Joe, when you were just 2 years old, what your parents thought was a trip to the hospital for an appendectomy..

Joe:
It was an appendectomy. Yes, and a week later it became a Wilms' tumor.

Michael:
So, in the course of what they thought was simply an appendectomy, it ended up that you had a cancerous tumor on a kidney. Is that right?

Joe:
Yes, sir.

Michael:
And so as a little guy, you were subjected to chemo and radiation.

Joe:
Yes. One of the first of three.

Michael:
And we'll discuss it during the show, but more than the physical pain, you were also subjected to the emotional challenges that most kids and young adults don't have to deal with. So I'm anxious to hear about your reactions to being a kid with cancer, particularly during a time when cancer was thought by some to be contagious. So I welcome you, Joe.

We also have Debbie, and Debbie, when you were just a little 9-year-old growing up in Vermont, a bump found on your arm turned out to be Ewing's sarcoma. And you, like Joe, had to go through chemo and radiation. However, my understanding is, Debbie, that when you were just 12, the beginning of puberty, your cancer came back. So you had to deal not only with more chemo but also the amputation of your arm.

Debbie:
Right.

Michael:
So, Debbie at a critical time, when kids are simply wanting to blend in and not be different, your cancer was in effect a loud secret. One where everybody knew, but nobody including you, I guess, wanted to talk about it. So I'm very glad that you are now.

Debbie:
Right. [laughs]

Struggles of Being Different as a Kid

Michael:
And Joe also, that you're going to be sharing with us. So let's go ahead and get started. First of all, let's talk about the whole issue of being a kid, and the social difficulties and challenges associated with this. And Debbie, in your situation it was highly visible. What was it like to be a 12-year-old girl all of a sudden in this situation? What were you feeling?

Debbie:
Well, since I had actually been through it previously, the treatments and losing my hair and all, that wasn't a new experience, and that is something that my classmates had already seen me go through.

Michael:
And Debbie, how did they respond? You were 9, so you were probably in third grade?

Debbie:
Right, well I was actually 8 when I was first diagnosed and that was actually hard because when I first got diagnosed we had just moved to a new town and I was starting a new school. I also didn't know the other children in my class when I first starting receiving my treatments. So that made it extra difficult..

Michael:
Yeah.

Debbie:
..because they didn't understand what was going on with me, and it wasn't even discussed. I don't know if the teachers told them anything or if the parents had told them anything, but it was not something that we talked about in my classroom.

Michael:
And how did you feel about it?

Debbie:
Well, I didn't want to talk about it. [laughs]

Michael:
Yeah. So you wanted to be just as quiet so you were just as glad that they weren't asking questions.

Debbie:
Yeah. And I tried to hide it from them, but of course I lost my hair and I wore wigs, so that became obvious. I was out of school for one or two days a week following my chemotherapy treatments. So that was hard. It was obvious that something was different.

Michael:
Debbie, in terms of your interaction with the other kids, you didn't want to talk about it. But how about just in terms of making playmates and going out on the playground and doing the other things that other 8-year-old third-graders do?

Debbie:
It was harder. I did have a cousin that was in my class, so I pretty much became friends with her friends.

Michael:
Uh-huh.

Debbie:
And I became very close to my teacher. [laughs] I'd hang out with my teacher a lot during recess.

Michael:
So you had a sensitive teacher?

Debbie:
Yeah.

Michael:
Yeah. Now when all of a sudden it comes back, and you're 12 years old and it's not as easy to simply kind of drift away in the corner and not talk about it, because it's become so apparent, and you're a little bit older. So you're 12 years old and all of a sudden you have the amputation. How did that feel? What was your response in terms of interacting with kids?

Debbie:
It was hard. I remember I was..plus I was out of school for about five or six weeks during that period of time. But I did have..one of my nurses did go and meet with the students in my class while I was out, and explain to them what was going on. So this time they had a much better understanding of what was going on with me, when I came back to school everybody knew. We still didn't really talk about it.. [laughs]

Michael:
Yeah.

Debbie:
..amongst ourselves, but they were more understanding.

Michael:
We all know, and actually I taught school for a number of years, and was a guidance counselor as well as running a camp for children, and of course being a cancer patient myself. But we all know that kids can certainly be sweet, and they can be nice and they can be helpful, and they can also be really, really cruel. Did you have any of those experiences, and if so, how did you get through them?

Debbie:
I had a lot more of those experiences the first time.

Michael:
Uh-huh.

Debbie:
There were some boys in my class that would try to pull my wig off.

Michael:
Yeah.

Debbie:
Or they would just talk about my hair all the time, about how it wasn't real and how one of these days it was coming off. [laughs] But it never happened. [laughs] I always..I had a quick hand. I always managed to grab it.

Michael:
And you found support from your teacher again?

Debbie:
Yes.

Michael:
Yeah, with that. And Joe, you had a different situation. First of all, in your situation, your cancer came when you were small.

Joe:
Mm-hmm. [yes]

Michael:
But it was also a time in the '60s, and in the '50s, for example, they didn't even often tell the patient that they had cancer. And in the '60s, because my father had cancer in the '60s, there was still this notion that it was contagious. And so you had all kinds of issues that you had to deal with as a little kid, and then growing up in Texas, a pretty macho kind of a state..

Joe:
Yeah.

Michael:
So what was it like?

Joe:
It was..it's hard to say. I mean, I was 3 years old. I got hit with it, you know. And I guess you don't realize it until a couple years later, you're different. My dad would lift up my shirt and show my scar and tell everybody, so I was always confronted with it. It was always open. We always talked about it. The older I got, we started..people would say stuff. When you..you're always at the beach or the lake. [laughs]

Michael:
Yeah.

Joe:
So your scars are pretty open. They look and point at you. People were pretty nasty what they would say and everything else, and faith..faith drives you. You know? And there was..you start feeling like you're only half a man, I guess, or half a little boy, because you lost your kidney and couldn't play football. You couldn't play all the rough sports, and like they say, kids are cruel.

Michael:
Yeah.

Joe:
They find out about it and they ride you for what it's worth.

Michael:
And how would you deal with that, Joe, when kids would do those things, or when you would feel different?

Joe:
I talked to my dad. My dad was my hero.

Michael:
And so your dad was able to provide support for you?

Joe:
Yeah! He sure was.

Michael:
Yeah. And you found support also, Debbie, from your family?

Debbie:
A little bit. I don't remember talking about it with my siblings a lot. I have three brothers and they always treated me normally, but I don't really remember having discussions a lot about what was going on with them. And I talked to my parents, but I think I also hid a lot of things from them, because I didn't want to upset them.

Michael:
Yeah.

Debbie:
I tried to protect my mother.

Michael:
And we hear that so often. The whole idea that the patient is the one who ends up trying to protect the support people, because they don't want them to be upset about it as well.

Joe:
Well the whole family is affected.

Michael:
Yes, that's right, of course.

Joe:
Whether you realize it or not, because you're going through this, and everybody sees you getting this extra attention, and they say things unmeaningly.

Michael:
The challenge for you guys is that you were little kids when you were going through this, so your world was different, and you had to grow up with it. As you got older, did you notice that the interactions with; your peer group, with the boys and girls in school, then the young men and women, and later on into the dating years, did you see a progressive change in the way people responded to you?

Joe:
Yes.

Michael:
Debbie, how about you?

Debbie:
Yeah, I mean, it's definitely today. I mean, I still see that I still have some of the old characteristics. I'm still not really open about my own feelings and stuff, and I still try to protect my mother [laughs] and don't tell her all the things that I do.

Michael:
Yeah.

Debbie:
But as far as newer people in my life, it's a little bit different. And most of the time, except for my arm makes my situation very obvious, [laughs] people know something's happened to me and they ask me about it. So everybody's aware that I have had cancer, but other than that, by looking at me you would never know that I had had cancer. And so, especially like at this time of the year, my arm is covered up with my sleeves and my jacket and mittens, and people that I meet or when I'm walking on the street nobody can tell. You know, different times of the year it's more obvious.

Michael:
And you've gone through the progression of having the little boys being little boys and being kind of mean at times, to those teenage years. How did you feel when you were a young woman and all of a sudden it was the issue of, that boy is kind of cute, or some boy comes over to you and all of that adolescence begins to surge?

Debbie:
It was very hard during my high school years. [laughs]

Michael:
Yeah!

Debbie:
I was very self-conscious about my arm. I wouldn't wear short sleeves. It'd have to be very hot out before I would even wear short sleeves in the summertime. I wouldn't take my arm off.

Michael:
Yeah.

Debbie:
I didn't go swimming for years. [laughs]

Michael:
Uh-huh.

Debbie:
I didn't even..I wouldn't even take it off in front of my whole family. It was probably, I don't know, five or six years before my brothers even saw me without my arm.

Michael:
Well, and so this carries into adulthood as well, with all of the feelings associated with it.

Debbie:
I think college made a big difference for me.

Michael:
Uh-huh.

Debbie:
Living in a dorm with the new people who weren't aware of everything that I went through, and they just, they actually had a lot of fun with my arm. So it made me a lot more comfortable. They used to like to play jokes with each other with my arm.

Michael:
Yeah.

Debbie:
[laughing] Hide it in each other's bed, and I think that was a big turning point for me.

Michael:
So, just having humor and having things more in the open?

Debbie:
Yeah.

Michael:
The support you got?

Debbie:
Yeah, and these people, I think I felt like they saw me differently. You know, they didn't, they weren't there, they didn't know about all those things that I had gone through, and it was almost like starting fresh.

Michael:
And how about you in terms of how you felt about yourself at that point? As a little girl you wanted to ignore it and pretty well hide it. As you were older and became a teenager, it was kind of embarrassing and you still were very self-conscious about it. Then you got into college and you indicated that it was more comfortable by talking and having some humor and the support from your friends in college. And now as a young woman, how are you feeling about Debbie?

Debbie:
Most of the time I'm totally comfortable with it.

Michael:
Uh-huh.

Debbie:
I still have, I don't know, different moments. I still have a hard time sometimes around new people. Not so much when I have my arm on, it's when I don't have it on.

Michael:
Yeah.

Debbie:
Sometimes it still bothers me. Like recently, my arm was being worked on for a couple of days, and I ended up taking a couple days off from work because I just did not feel comfortable going to work without it.

Michael:
Yeah.

Debbie:
And you would think after all these years I could do that, but certain things I can't do without it.

Michael:
Yeah, well I think anybody, as you get older you become comfortable with who you are, and there are times when you have to kind of adjust your schedule to feel even better about who you are, and that's very understandable. Joe, when you were growing up, again having spent a lot of time in Texas, and I love the state, there tends sometimes to be a conservative edge to it and a little bit more of a rawhide kind of macho sense to it. How about as you were growing up, were you reluctant to talk about having cancer as a little kid, or did you openly discuss it? How did kids, in particular, girls, how did they respond when they heard that you had cancer or they saw your scar?

Joe:
They would freak out! I think everybody would freak out and ask me what happened. And you'd start dating, and when you started dating you knew it wasn't going to last long because they were all, they all had the idea, "Well, is it going to come back?" Even as a kid you think that, because you're constantly going to the doctor. It starts out as a weekly check-up, then it goes to monthly and then it progresses to yearly. And you're constantly in and out, once a year and people are noticing this and they're thinking..I mean you can be very well. But in the back of your head, even you know that there's a chance that it's going to come back, and they tell you that.

And even when I was younger, I can remember like 8 to 10, I guess, they told you that if you were lucky, if you saw 18 you ought to be happy. And it was..that's a difficult thing to take I guess at that age. And I mean, different people respond different ways, and..

Facing the Decision to Become a Parent

Michael:
Absolutely. Again in my situation, being diagnosed with cancer when I was in my 50's, and so experiencing interactions with people and my own thoughts about recurrence, for only a period of two years. It's considerably different, as opposed to you guys when you had it all of your life, when you've adjusted and adapted and grown with it. And what I didn't have to do was to think, for example, about questions of having children. When I was diagnosed with cancer, my children were all grown-up kids. So how about you guys in terms of..you've got a 4-year-old son, Joe. Is that right?

Joe:
Yeah.

Michael:
Did you give some thought in terms of, "Gosh, I wonder if I can be a father," or "Should I be a father?" or "What about my little boy? Is he now going to have cancer?" What were your thoughts in terms of that?

Joe:
Well, it's not only you, it's your wife. Now, I'm soon to be divorced, but you have to discuss these things, and you have mother-in-laws that'll pop off at times, and she would say, "Do you really want to put your son through what you've been through?" And you swallow your pride and you make it through the mill. And you leave the room and you tell your wife, you try to explain to her, I have had a long hard road to hoe.

Michael:
Yeah.

Joe:
And to hear somebody say that is a little bit uncalled for. Then they go and find out your wife's pregnant and go through seven ultrasounds. And you're wondering what they're looking for because you hear horror stories. You're told as a kid, and you hear other people telling you that at your age this is all experimental and it's really not a good idea to have kids.

Michael:
But you had this doc who was telling you you'd be lucky if you got to be 18.

Joe:
Yeah. Exactly.

Michael:
And when he told you that, how did you feel and how did you react, how did you handle it when some guy says to you..

Joe:
Normally, because I knew I was going to whip it.

Michael:
Yeah.

Joe:
I had a deep faith in God, and he had a plan for me. So, you take it by the horns and you go with it, because, like I said, we went through seven ultrasounds. [laughs] We were wondering what they were looking for. And they had to ask you..they wanted to do other tests before he was born and, you finally put your foot down and you say, "Either you're going to keep this kid or you're not." We were going to keep this kid no matter what. I didn't care, you know? And after all that it comes to the day where he's born, and he has ten toes and everything else..ten fingers, and you're wondering..you start to wonder again, what's his life going to be like. What effect did this have on him?

Michael:
And in terms of fathering a child and going forward with that do you think it made you more hesitant?

Joe:
No. Not at all.

Michael:
Yeah.

Joe:
Either you're going to do it or you're not going to do it.

Michael:
Right.

Joe:
If you're going to do it, you're going to run. And that's the way I am!

Michael:
And you get as much information as you possibly can, and you make a decision to move forward.

Joe:
And there's not a lot of information out there. That's the problem.

Michael:
Yeah.

Joe:
I mean, you can look all you want, and there's nothing really out there, because at my age a lot of people drop out of the programs that they have to follow you up on, so..

Michael:
And you've had no difficulty since you were a little boy?

Joe:
Well, I've had adhesions and that's about it.

Michael:
Yeah. And Debbie, how about you? You're a young woman. Did you give thought with regard to your cancer and conceiving and having children?

Debbie:
Well, I was never told there was any reason why I shouldn't. I have been warned [laughs] that it would probably be more difficult for me to get pregnant and although I'm not married [laughs]..

Michael:
[laughs]

Debbie:
..and I don't see that happening in the near future. So I'm not--at this point I'm not sure, I will be ready to start a family. But every year my doctor does warn me [laughs] that, already I probably have less chances than most women, and my chances are getting less faster. [laughs]

Michael:
Well, in terms of young women and young girls who will listen to this show and think about children later on, what would you suggest that they do?

Debbie:
Well, I don't know. I know plenty of other cancer survivors who, I mean other women who have perfectly healthy children. I wouldn't be afraid to have a child if the opportunity ever came up for me. I definitely would have tried. There isn't any reason why I think that I shouldn't, it's just that at this point in my life I haven't [laughing] met the right person to have them with.

Michael:
Yeah, and I think that's important for everybody to recognize, that there are so many different kinds of cancer, and regardless of when you got your cancer or what kind of cancer.

Debbie:
Right.

Michael:
Information is everything.

Debbie:
I'm not worried about passing it on to my child or anything.

Michael:
Yes.

Debbie:
It's more of a fertility issue, and the fact that my chances are already quite slim and there are chances that I just wouldn't be able to get pregnant. And it just, the older I get, like most women, your chances are less. But mine, he warned me that the menopause could happen much sooner for me.

Michael:
Yeah. Well, here's a question for you, and both of you. I appreciate tremendously the fact that you're opening your hearts and your souls, and I know that it can be painful at times to do this. But it's so valuable, both for you as well as for other people, so I have to ask you the question. Debbie, when a relationship does develop in the future sometime--that future may be tomorrow or next month or next year and there is somebody in your life..how will you discuss the issue of children? How would you bring it up?

Debbie:
I would tell them everything.

Michael:
Mm-hmm.

Debbie:
In past relationships I have discussed it before, and I would definitely admit that it could be a problem. It's something that might not ever happen for me. I have accepted that and I have realized that there are other ways to have children.

Michael:
Absolutely.

Debbie:
And I would be totally open, you know, to finding a baby somewhere else, and hopefully the person that I'm with would be open to those choices as well.

Just Wanting to Be Treated Normal

Michael:
Both of you have good advice about this and good reactions to it. Did you just come to it yourself or are there support groups out there that you know of that deal with the issue of fertility? So that you can talk specifically about chances of being a father, or what's it like, and what kind of questions will I get from my mother-in-law, and what do I tell my children? Are there groups like that out there?

Debbie:
I actually have never been a part of a support group before. It's something only in the past couple of years that I have looked into more. I don't know, in the past few years I felt more of a need to learn more about myself and learn about what impact this has had on my adult life.

Michael:
Where are you going when you look for that information?

Debbie:
Friends, and I actually have a therapist that I talk to about a lot of these issues with, and she really helps me to be more open and to go out and look for more answers.

Michael:
I think what you said is so valuable in my sense, and then also talking. In fact, I have written two books in the area, and the next one deals with children, and there will be interviews with children, but I'm finding this show very valuable. And what you just said was that you have talked to somebody, so you've seen a therapist, so you seek out professional assistance with this?

Debbie:
I wish I would have done that years ago. [laughs]

Michael:
Yeah. Well, that's so valuable for people who are listening and reading the transcript, to recognize that you don't have to keep this inside. Particularly when you've had it as a child because it does have an imprint and it will carry with you in a variety of ways that you've lost touch. You don't even know exactly how it has.

Debbie:
Right. And as a child, I learned..I kept these things inside. So that's how I learned to deal with it, which now I realize probably wasn't the best [laughs] way to deal with it.

Michael:
Well, at the time..

Debbie:
That's just the way it was done.

Michael:
Yeah. For both of you, when there have been people who have been supportive, when you were growing up, when you were little, and then when you were a young adult, and then even now. What were the kinds of words that you found to be most supportive? What helped you out most?

Joe:
What helped me out most?

Michael:
In terms of other people? Because a lot of times what we do is we forget that there's people out there who really don't know how to deal with us. [laughs]

Joe:
Yeah, because you're like a forbidden fruit. They don't know what to say.

Michael:
Yeah.

Joe:
They don't know what's going to set you off. I mean, I've been trying to find a support..early on, when I became 18, I looked for a support group, and none of them were out there. And then you start talking to doctors, and I was very aggressive, maybe a little more aggressive than I needed to be, and tried to start one. And you get more hassles and hustled and everything else, because they don't understand why you need this.

Doctors will put things on the internet saying that if you've been through certain types of cancer that you don't have good marital relations or you don't get along with people very well, and that's not everybody. That's just certain people. They don't say that, but they make it a standard statement, which is really cruel to all of us. And it's hard.

What kind of things would help? I mean, you want to be treated like the rest of the people. People, when they hear that you lost a kidney they think that, "Oh, you can't do this. You can't do that." I used to go to a lake and kneeboard. That used to be one of my favorite things. Everyone was like, "Aren't you afraid of taking a hit in the back?" I said, "You got to have faith that the good Lord knows what He's doing. He's taking you this way and you're going to go with it. Run with it. And I'm going to try to live as normal a life as I can."

Michael:
And in terms of the kinds of people that you have found to be supportive, and Debbie, this is for you as well. We know the kinds of things they can do that can hurt. But, specifically, what kinds of things or what can they say that makes it more comfortable for you to deal with being an adult at this point and having had cancer as a child? When you think about those people who are most supportive, what characterizes them as being supportive?

Joe:
A lot of times the other person has been through it, believe it or not. As strange as that sounds..maybe not the same type of cancer..

Michael:
Right.

Joe:
..maybe not even the same years, but they've actually been through it. They've walked the walk, they've talked the talk. Because I can remember three years ago, going back [to] my oncologist, and I met this little boy, he's probably 4 years old..

Michael:
Yeah.

Joe:
He looked at me and he said, "You're my hero." He'd heard about me and what I'd been through, and he got the Make-a-Wish Foundation..his wish was granted, and he says, "All I want is to give everybody ice cream in the whole hospital."

Michael:
Yeah.

Joe:
So, a Texas-based ice cream, they came in and gave all the kids in the hospital ice cream. And when he came out, they also gave him a truckload of ice cream. He got to go through the whole neighborhood giving out ice cream. So you're looking for somebody that..what kind of people support you? It's going to be somebody that's been through this and understands what you're going through.

Michael:
And what's beautiful about that story is the little boy received so much joy by helping others. And I think that we find that in the cancer community as well that when you do reach out and of course I understand those who wish to be anonymous. That's why I also appreciate so much the fact that you guys have chosen to share your feelings and to allow yourselves to be vulnerable, because it helps tremendously.

There's a lot of people out there, Joe, and you just touched on it, who may not have had cancer, but have gone through other things in their lives. And what we want to do, all of us, is to try to help those people who have not had cancer know what to say, what to do in terms of giving support to the survivor. Debbie, how about you? Those people that have been supportive from the time you were a little girl (with your teacher) right up to now. What characterizes those people?

Debbie:
You know, just people who accept you for what you are and just stand by you.

Michael:
Is there any..actually what I'm hearing you say is treat you normally.

Debbie:
Yeah.

Michael:
Treat you like they would anybody else. That's a lot of it too, is that because people don't know what to say, they don't say anything.

Debbie:
I think for many years I kind of just wanted to hide the whole cancer thing, like I said, which was hard because I have this arm that makes it all so obvious. But you know, I think just being treated the same as everybody else is what was most important to me.

The Importance of Talking Openly

Michael:
And both of you obviously, are comfortable enough to come on the show and talk about this. There are a lot of people with cancer who really wish to remain very anonymous, and they don't. They're very uncomfortable when it comes to talking about cancer, and I'm talking primarily about adults. When people approach you, Joe, and when they approach you, Debbie, and they're curious, are you comfortable in discussing it with them?

Debbie:
I am, but I'm used to being approached all the time. [laughs]

Michael:
Uh-huh.

Debbie:
Especially in the warmer months when everybody can see, either my prosthetic arm, or if I don't have my arm on they can see that I don't have one. So I'm always..you know, I go to the grocery store, I'm always asked once [laughs]..what happened to my arm. And I don't mind, I mean, I tell people. I don't always like all the pity [laughs] that I get sometimes, or everybody just instantly feels really bad. But it was so long ago that I'm fine. [laughs] You try to explain that to them, but they automatically just feel so bad for you that you had cancer. But sometimes that's helpful, because I actually got out of a speeding ticket once. [laughs]

Michael:
[laughs] So you could use it, too, sometimes.

Debbie:
Yes.

Michael:
Well, for a lot of people they find it very therapeutic to talk about it, and then again for some people they get to a point where they would rather not have any discussion. You guys are in a unique situation because when you run into a child who has cancer. So if you see a little one, maybe it is a 6, 7, 8, 9-year-old who has cancer, or a teenager; what advice being on this side of it, do you have for those little ones?

Joe:
Oh gosh. That's a tough one.

Michael:
Yeah. But, think about it. Think back to when you were little. What advice, Joe, would you give yourself if you, Joe, were standing in front of you now when you were seven years old and thinking about life ahead of you. And, now at 40, that little guy?

Joe:
Aahhh! That's really tough. I guess, hang in there--and I wouldn't know what to tell him.

Michael:
Well, you know what? There's a lot what you just said with "hang in there". But it's a question to give a lot of thought for, because there are a lot of little kids who can benefit from that. And probably even the little Joe that's still inside you can benefit from you giving him some advice sometimes, too. How about in your situation, Debbie?

Debbie:
I would say to try to talk about it more. To tell people what you're feeling, and if you can't tell your mother [laughs] tell someone else. Talk to other adults, or try to talk to other kids that are going through what you're going through, and also to just try to do things that kids do, you know? Don't try to hide. Try to just get out there and be a kid.

Michael:
And when you've got the parents of those kids in front of you, what advice would you give to them or suggestions or reflections? Either one of you?

Joe:
Well, a lot of times they're going to give you this, "Why is this my kid? Why do I have to go through that?" I've heard that, and that's not an easy thing to answer. [laughs] I mean, you went through it, I went through it. I made it, and you try to explain that to them, you know? Yes, your kid is going to have a rough time in life, you know? Maybe it's a little bit different than what you expected.

Michael:
But Joe, in your situation you said your dad was very helpful.

Joe:
Yeah. Extremely helpful.

Michael:
And how was he helpful?

Joe:
He would talk to me. He would tell me things were going to be all right when I didn't think they would be.

Michael:
Yeah.

Joe:
He was my hero.

Michael:
Yeah.

Joe:
And I was his because he went through it. At, I guess, at 52 he had prostate cancer, and he had the same problem. He was just like, he kept on thinking, "Oh man, this is like a death sentence." And I can remember him coming out of surgery--I go in there and I said, "Dad, you're going to have to get out of bed. Surgery's over with. You have to be a man about it. You have to get out of bed." [laughs] And he was just, "No! No, I can't do this." And I said, "You know what? When I was a kid and I was going through this, this is the same darn thing you did to me!" So, it's amazing, you know they say turn-around is fair play, and it really wasn't fair play; it was like my dad was the kid now and I had to see what he went through.

Michael:
And so your advice to parents would be to make sure you talk to your children, to encourage them.

Joe:
I mean, like I said, the whole family's going through it. You know?

Michael:
Yeah.

Joe:
You know, you just think your kid's going through it, and you're sitting there and you're saying what do you want to tell his parents. You are actually going through it with the kid.

Michael:
Right.

Joe:
Maybe not the same thing. Maybe you're not feeling the same way, but the whole family is going through it, and you're all going to feel different. I'd say; find a family that's gone through what you've gone through and learn from it, like you're saying. Talk to them. Tell them what to expect.

Michael:
And to build a support group. Debbie, I'm going to ask you the same thing. If you could all of a sudden now project yourself out ten years, and say that you do..you do have children. What would your advice be, looking back at your life as a small child? How would you suggest that parents interact with a child who has cancer?

Debbie:
Definitely support groups. Talk to other people who are going through the same thing. And make sure that your child has that too; that the child is talking about it has other kids to talk with. Just make sure your child knows that they're still an okay person; that they're still normal.

Michael:
Yeah.

Debbie:
I just remember feeling so different..than everybody else.

Michael:
Well, and you were at an age where when you start increasingly, particularly as a girl, to become different and the last thing you want to be is different, [laughs] and then to be in that situation. So what you're saying is that parents need to encourage their kids and to support their kids, and to make them feel like they're a regular kid as much as possible.

Debbie:
And I think there are just so many more opportunities for that today anyways. When I was in school, I was--except for these few other patients at the clinic that I went to, I was the only person that I knew that had cancer. I was the only person in my school.

Universal Concerns Cancer Survivors Face

Michael:
Yeah, so to find support groups. I've got two more questions, guys, as we get closer to wrapping it up. One is; and I want you to think about this for a second, when its 3 o'clock in the middle of the night, and you wake up and you start thinking about your life and your future with regard to cancer, what are your concerns? What are those whispers that occur with regards to the cancer? Joe, how about you?

Joe:
I've lost most of mine.

Michael:
Yeah.

Joe:
I mean, you learn to accept life, you know? You say, whatever life is going to throw at me, that's what was given to me, and I find myself deep in prayer sometimes when I start doubting.

Michael:
And you found a lot of support in your faith.

Joe:
Yes.

Michael:
So in terms of your future health risks, you don't seem to me like you obsess and worry too much about that?

Joe:
Oh, you read it. You read about the stuff they've done to you, and you start understanding, and you say, "This is my possible future." You don't make it your future. If you read that stuff and you get overwhelmed with it, you shouldn't read that stuff.

Michael:
Yeah.

Joe:
I mean, this isn't what's going to happen. This is a possibility, and that's the way you need to look at it. This is what COULD happen. It's not what's going to happen. I've known a lady who had a Wilms' tumor, she's 50 years old. All she had was radiation, and I've tried to start a support group with her, and she just said, "No interest. I want to live my life. I don't want to help people." [laughs]

Michael:
Yeah.

Joe:
Which is shocking to see; most cancer patients, they want to help other people. They're givers.

Michael:
But I also hear you saying in terms of the future is that what you do is you trust a lot in your faith and you also live life in the moment.

Joe:
Well, you have to, after what you've been through. Most people in their whole lives don't..it's like climbing a mountain. You know a lot of people talk about doing it. Well, literally, you've climbed a mountain. You've been through more than..more people have seen [laughing] me naked than I care to think about. I mean, like topless, I felt like a dancer. Doctors constantly asking you, "Disrobe."

Michael:
Yeah.

Joe:
I can remember in the early '70s when I first met my first woman doctor being very young, and to think I would [laughing] have to disrobe in front of a woman. I don't mean to be disrespectful, but..

Michael:
Yeah!

Joe:
I mean, you've done more than most people ever think about doing in their life at such a young age. I mean, it wasn't something that you asked to be put through. It was something that was forced upon you or whatever.

Michael:
Debbie, when you think about the future, do you have particular health concerns?

Debbie:
Not too much. I don't worry about the cancer any more.

Michael:
Yeah.

Debbie:
I do realize that there could be long-term chemotherapy side effects, but I do get tested every year. I still see my oncologist, and my tests have been normal, so I don't worry about that too much.

Michael:
Well, one thing that you just said that we all have to remember, and that is, that we are the ones that are responsible for our future health. And for you to go and get your screening and stay with your oncologist is wonderful, wonderful advice for people. That's critically important, and also it sounds like you also live life and appreciate the moments of life and don't worry too much about it.

You also said something very important, and that is the fact that you are concerned about long-term radiation and chemotherapy effects. So you investigate it and you go out and you get the research, and that's the best you can do.

Here's a question for you guys. We all know the challenges associated with having cancer, and you know it for longer periods of time than adults who had adult-onset cancer. What are the gifts associated with it? Joe, what gifts has cancer given to you?

Joe:
I think a deep respect for life and a deep respect or understanding that people are different. I really appreciate life. I mean, every day of my life, I love it. Having my son, that was a miracle. More of a miracle than I could ever say; to have a chance to have a little boy. Oh my God! I can't begin to tell you! I mean, just thinking about it brings tears to my eyes.

Michael:
Sure!

Joe:
I mean, think of what I've been through and how it's affected me. Yeah. But how are you going to help everybody else in the world? You become, I guess to some people, you become a hero; an unknown hero.

Michael:
Yeah. And we hear that a lot from the community, and of course I feel that as well. I think there's an intensity that comes with it, with regard to an appreciation for what life has. And then also this connective tissue, that regardless of if we're in Texas or Vermont, or in Michigan or in Nepal, or we're in Norway or Great Britain, that we are all connected in some fashion, and we find that.

How about for you, Debbie? You're a young kid and you get cancer, and all of a sudden you're 12 years old, you lose your arm, your wig blows out the window.

Debbie:
[laughing] That did happen.

Michael:
So, those were all the challenges. What were the gifts along the way?

Debbie:
I think it took me a while [laughs] to realize that there were some gifts that went along with it. And it does, I think, make you appreciate life and make you want to live the life that you've got. And I think it makes you a more sympathetic person and makes you want to reach out to other people and to let them know that there are other people who have been through it before and that they're there for them.

Michael:
When you think about the future, both you guys, what are your biggest fears and what are your biggest hopes associated with the life that you've lived? What's your biggest hope? What are you looking for as you go forward with this, Joe?

Joe:
I guess a cure to cancer. That's been my hope for many years and I guess my biggest fear is, you go the oncologist and you don't hear the answers.

Michael:
Yeah.

Joe:
You're in there, and they're asking you all these questions, "What's going on in your life? What's changed? What's this? What's that?" And you're telling them, and you're going, "All right, so it's my turn to ask questions. What should I expect?" And they don't tell you nothing. They hush up. You've been through radiation, you've been through chemo, and they've done things to you that you don't even know about probably. And it kind of makes you wonder. So fears would be if something does happen to me, who's going to care about me?

Michael:
Yeah. Yeah. Some pretty universal concerns.

Joe:
Yeah.

Michael:
And the fact that you're looking for the cure and you're also concerned about the fact that there's a lot of information that's not available. So the challenge of getting information out there. Well, I think what you're both saying is the important thing is that you're going to hear information all over the place, and you're going to hear rumors. And with the Internet, you're going to get lots of very good information and lots of very horrific information. And the important thing for you is to become the lead member of your cancer team, and get out there and find the information and pursue it. I think that we hear that all the time in terms of cancer survivorship.

And Debbie, for you, what do you want to see in the future? What do you see? What are your hopes?

Debbie:
I guess I just want to live my life to its fullest. I hope to have a happy, healthy family some day.

Michael:
Uh-huh.

Debbie:
To get over these problems that I have had in communicating or whatever, and just put that behind me and to just move forward.

Sharing the Humor

Michael:
Well, and it sounds to me like you're doing that. You're doing that by talking to people, getting therapy, working through these things, and wanting very much to have people respond to you in a normal way, and to move forward living a normal life. It's always fun to kind of finish these things in thinking about and God knows there's a lot of humor associated with this. And as a man with breast cancer, believe me [laughs]..

Joe and Debbie:
[laughing]

Michael:
..if I didn't have a sense of humor. It's kind of funny. I'm on tamoxifen, which is a drug that was done with clinical trials with 30,000 women and me. I mean, it's kind of..they have no idea. And one of the side-effects, if you're a woman and you're not in menopause, it will put you into menopause. So I'm here to tell you that I have put the men into menopause!

Joe and Debbie:
[laughing]

Michael:
My wife and I are sharing menopause, by the way. So the hot flashes and the cold sweats. In fact, my wife thinks that all men should go on tamoxifen for at least six months..

Joe and Debbie:
[laughing]

Michael:
..to feel it. So we certainly appreciate the need for humor and for those around us to lighten up a bit, too, at times about this. When you think back in terms of something you have found to be humorous, perhaps in retrospect, Debbie, what have you found to be--what is your funny story associated with it?

Debbie:
From while I was a cancer patient?

Michael:
Anything of the light side of your cancer experience. You mentioned one. And I had a great picture because my youngest daughter is in a dorm now, and I can imagine with your prosthesis being tossed around and..

Debbie:
With the other girls in my dorm hiding it in each other's bed.

Michael:
Yeah. And the beauty of that is that the humor associated with that and the act itself is one of love and support.

Debbie:
I think that more recently, one of the things that people get the most humor out of is, if I get to work late because I've had a hard time figuring out where I put my arm.

Michael and Joe:
[laugh]

Debbie:
And I haven't been able to find it in the morning.

Michael:
[laughing] Yeah, that's a good excuse! That one's a hard one to argue with if you're a boss.

Debbie:
Yup. There's not too many people who are late for work because they lost their arm.

Michael:
No, no, no. Uh-uh. [laughing] And just like with the police officer. You can use that to help you. Joe, how about you?

Joe:
Well, I got into a support group that you never get stuck with kids but you get stuck with older adults. And I went through training, and I can remember one of the times, the first night I had to go through training, I got stuck with seven breast cancer survivors, all women. And I go into this room, and they stick me, because they said I was a loud mouth, and they said I was enjoying life. And these people had just gone through it and they're becoming like friends; cancer friends.

Michael:
Uh-huh.

Joe:
And they tell me who I'm stuck with, and they introduce themselves. So I run to the bathroom real quick, thinking I'm going to climb out the window [laughing]. Because I'm sitting there going, "I don't think I can handle this." You know, I can handle guys talking but to think of seven women telling me about breast cancer, I was just blown away. So I come back, and this one lady tells me, "Oh, there's no window, is there?" [laughing] She read my mind, and to hear her story. She was so funny. She goes, "Joe, I'm going to tell you my story. I'm going to tell you how you should feel." She goes, "I was having my house remodeled, Joe, and I found out that I had breast cancer. I had to stop the remodeling job.

And this older gentleman, two weeks later, he comes back in my house, and he says, "Ma'am, I've heard what you've gone through. I just went through that two weeks ago." And she was just floored. She was madder than hell because she knew what he meant. He'd had a vasectomy, and she said, "Oh, I was ready to throw my cup of coffee on him and beat the hell out of him." She goes, "I started laughing, because I thought it was so funny. This guy was so naive. Didn't understand that I had a mastectomy, NOT a vasectomy".

Michael:
[laughing] Yeah. There is a difference.

Joe:
[laughing] Yeah, I know there is a difference.

Michael:
I'm probably the only man you know that can have that discussion with women. Try and be part of that! Listen, I want to thank you. I want to thank you on so many fronts. I want to thank you as a member of your group, being part of this whole process. I actually have a blessing of being able to go around the world and do a lot of work in cancer survivorship. I find this phenomenal bond, and it gets tighter and tighter and it grows and supports everybody, when folks like you come on and share it and talk.

And remember, survivorship applies not just to us, but to everybody who comes into contact with us. So our words are not just for people who have cancer, or for kids who have cancer, or for adults who have had cancer as kids, but for everybody in this huge, huge community. So I appreciate your vulnerability in coming forward with this. And for our listeners, I hope this discussion has helped you to sort through some of the issues that may be part of your life.

And again, a big thanks to Debbie and Joe for being so open and sharing this and I hope that their experiences will help you better in how you approach your life. I encourage you to listen to other discussions that we have available on the website or by phone. In wrapping up for the American Cancer Society's Cancer Survivors Network, I'm Michael Samuelson, wishing each of you a great day, today and every day. Thank you.

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