MICHEL MARTIN, HOST:
I'm Michel Martin and this is TELL ME MORE from NPR News. They say it takes a village to raise a child, but maybe you just need a few moms and dads in your corner. Every week at this time, we check in with a diverse group of parents for their common sense and savvy advice.
Today, though, we're going to switch it up and we are going to ask for advice on how to deal with a frightening disease when it affects a parent and we're talking about cancer. It affects millions of people every year and it takes tremendous energy to fight, but cancer doesn't just affect the patient. It affects the entire family and our next guests say some three million American children live with a parent who's a cancer survivor. About a third of those or about a million are teenagers and you can imagine that navigating both the teen years and cancer can be rough.
So we've called in some experts who've been there. Maya Silver's mom was diagnosed with breast cancer more than 10 years ago when Maya was 15. She and her dad have written the book they wished that they had had to guide them. It's called "My Parent Has Cancer and It Really Sucks" and they are both with us now.
Maya Silver and Marc Silver, welcome to you both. Thank you for joining us.
MARC SILVER: Thank you. Hi, Michel.
MAYA SILVER: Hello. Welcome. Thanks for having us.
MARTIN: So, Marc, the title gets right to the point, doesn't it? How did you get the idea for the book?
SILVER: It's funny because we lived through all this and Maya and I never talked about what it was like for her and for her younger sister, who was also a teenager at the time, and out of the blue, a friend of mine who runs Gilda's Club in Seattle sent me an email about an essay contest she runs for teenagers who've been touched by cancer. And she said, Marc, this is your next book. You've got to read these essays. And these kids often wrote about a parent who'd been diagnosed and they wrote with incredible feeling and dark humor and this sense that they were just out of sync with everybody, that nobody knew what they were going through and it made me feel like, wow. That would be really some great book to put together if we could.
MARTIN: Maya, is that your recollection, that you never really talked about it?
SILVER: Well, I only talked about it when I had to, but I definitely avoided any kind of discussion or communication about cancer. When friends or, you know, family friends or relatives would ask me how the family was doing, how I was doing, I usually had a pretty curt answer of, everything's fine, and tried to move on with the discussion. It was just something I was never really comfortable discussing and something I wanted to deal with privately and so, as you can imagine, when my dad came to me with the idea of writing this book, I definitely had mixed feelings because I really hadn't dealt with it or started talking about it to that point and so I knew that that was going to mean really coming to terms with what, you know, our family went through and thinking about it quite a bit.
MARTIN: And I thank you for being willing to talk about it with us. What do you remember most about that time, if you don't mind my asking you?
SILVER: I remember, you know - and this is something we write about a lot in the book - this tremendous sense of being pulled back into family life when that was not what I necessarily wanted. As a teen, you're out there trying to figure out who you are and who you want to be and forge your new identity and I - you know, I was by myself getting really busy with lots of activities and friends and pouring myself into school work.
And so, you know, when I found out, it was kind of like, oh, my God, what am I going to do? Do I have to have my life come to a screeching halt? And so I spent a lot of time dealing with that tension of feeling like I should be at home, at home with my mom and my family, but wanting to continue to build my life.
MARTIN: And communication is a big subject in the book, how much to talk about it, how much to not talk about it. Marc, is there one thing that you really wish you had done differently?
SILVER: Yeah. I mean, I think the one thing we did that was right was we told our kids what was going on. We were really honest about the diagnosis, about Marsha's prognosis, about what the treatments were like. But we never, ever asked them, hey, guys, how are you doing? And I think a lot of parents of teens have that same situation. You're so consumed with cancer and you've got your jobs and your regular lives and, all of a sudden, you're dealing with cancer doctors and cancer treatments and all these unknowns and the teenagers in our family seemed to be just doing OK, so we figured, great. They're just doing OK and we never took time to say, are you scared? Are you nervous? Do you have any questions?
MARTIN: Maya, do you wish that your dad or mom, for that matter, had asked? And, by the way, I understand that she's doing well.
SILVER: She is. Yeah.
MARTIN: Your wife, Maya's mom...
SILVER: Yeah, yeah.
MARTIN: ...Marsha.
SILVER: Yeah.
MARTIN: Is it OK if we say her name?
SILVER: Absolutely.
MARTIN: Is doing well. We're happy about that. Maya, do you wish that your dad and mom had asked you more about how you were doing? And your sister, who was 12 at the time - do you wish they had asked you more or would have been, stay away. Stay away.
SILVER: Yeah. I mean...
MARTIN: Do not...
SILVER: It's hard to say. In retrospect, after interviewing all these teens and experts, it's very clear that communication about how everyone in the family is doing, teenagers included, is kind of a best practice. It's good to have communication about that and make sure everyone is coping appropriately. But it's hard to say. I mean, you know, when I was a teenager, if my parents had approached me that way, I might have, like - I don't want to talk about it. Leave me alone. And so it's hard to know.
But, you know, I think it would have helped me been more ready to deal with the experience and be able to talk about it with others if we had had more family communication about the emotional aspects.
MARTIN: You know, Marc, one of the things that - there are a lot of teens heard from in this book, but there are also - it's salted through with, you know, experts and research. But one of the interesting data points that I've learned from the book is that, in terms of how well kids were able to cope, that...
In this book, but there are also - it's salted through with, you know, experts and research. But one of the interesting data points that I've learned from the book is that in terms of how well kids were able to cope, that sometimes the kids whose parents actually had worse diagnoses were coping better. Because the prognosis was worse, the parents were giving more information. That seems counterintuitive but it does make sense when you explain it that way.
SILVER: Yeah, you're right. I mean...
Could you talk a little bit more about that?
Yeah. When we first found that study it did seem sort of weird, like, well, why would you be coping better if your parent had a more difficult prognosis? And what the study found is that in families where there was a more difficult cancer to treat or more difficult treatments, the parents often talked more about the kids and there weren't a lot of unknowns. And I think for a lot of these kids it's just that big unknown and the scariness of the word cancer.
I met - I went to a support group in Columbia, Maryland, and one girl said to me, I said what do you wish you had known? And she said I wish someone had told me not everybody dies of cancer. So these kids have their own fears. Maybe they've inherited them from parents or soaked them up from the media. And when parents and kids can talk about what's happening it's very, very helpful and it sort of eases it. Even if the parents answer is, gee, I don't know right now but I'll ask the doctor the next time we see him.
MARTIN: If you're just joining us, we're talking about the new book " My Parent Has Cancer And It Really Sucks." It's a guide for teenagers living with a parent who has cancer. Our guests are co-authors Marc Silver and his daughter Maya Silver. Maya's mom - Marc's wife, Marcia - was diagnosed with it and is doing very well, surviving breast cancer.
Maya, one of the other things about communicating with your peers, some of was actually kind of painful. I mean one of it, some of its funny, which is what do you do when your friends all come to you with sad eyes...
SILVER: Yeah.
MARTIN: ...which is one thing. But the other thing that I found painful was to discover that there are some kids whose friends drop them when their parents were diagnosed - a parent was diagnosed with cancer because they said I just can't deal with that. And do you mind if I ask, did that happen to you? And was that surprising to you? And what was your advice on how to cope with that?
SILVER: I was lucky enough I didn't have any friends that dropped me because my mom had cancer. But, and I think that was probably the minority of teens that we talk to that had a friend that actually, you know, disassociated with them or disconnected their friendship because of that. You know, if something like that happens it's better that this friend, who might be kind of a jerk, is upfront about it from the beginning instead of trying to, you know, trying to be a friend and really isn't there for them and there are, you know, they're not getting what they need from their friendship and so they can just go seek one out somewhere else. You know, but something we say from the upfront in the book about friendship is you can't live with and you can't live without 'em because you really need your friends. You need a support network. You need people to talk to. But chances are no one in that network is going through the same thing you are, or has gone through the same thing you are. You have a limited life experience, and so they don't really always know the best thing to say or how to act around you.
MARTIN: Maya, do you mind if I ask, what's your take on support groups that are specifically designed for that purpose? I mean as an adult, I sometimes find those kinds of things when people suggest them to me for various things that I have experienced like unbelievably corny and I'm, like, really? Like, a bunch of people I've never met, I don't think so. But I don't know. Is that a good - did you ever experience that? Did you find that helpful?
SILVER: I didn't go to any support groups and I'm not sure I would have been the type of person that would have really found solace in it. But my dad visited with a number of them and interviewed a bunch of teens in support groups and for all of those teens it was a really powerful experience. And we also connected with an organization called Camp Kesem, which runs camps around the country through colleges and universities for children and teens whose parents have cancer. And they're such an incredible unspoken and understanding at those camps and I visited one of those and my dad visited a few as well. Just having people around you that know what you're going through and can commiserate. And you don't necessarily need to talk about your experience, you just have that, you know, silent understanding, like you know you're going through the same thing as me. And so I think for teens that are willing to try it, it can be a really powerful experience when you don't have anyone as a friend or, you know, acquaintance that might be going through the same thing naturally.
MARTIN: Marc, you wrote that almost every teenage boy you spoke with about this experience had punched a wall at some point during the parent's cancer treatment. And you actually - I don't know why I'm laughing. It's not, it's funny but it's not funny?
SILVER: It was - exactly. Yeah.
MARTIN: But you actually give instructions for how to repair a fist-sized hole in the wall.
(LAUGHTER)
SILVER: Through the wall. Yeah. I mean...
MARTIN: Tell me about that, if you would.
SILVER: The first couple of boys that I interviewed who did this were two teenagers in Cleveland, these really tough guys, who come to a support group. And for them it was really, I mean, like Maya said, it's not for everybody, but for them it was a chance to just talk about it. And they go like, oh, yeah, I got so mad I punched a hole in my bedroom wall. And one of them goes, yeah, don't try to punch a hole in a brick wall, you'll break your hand. I think he really did punch a brick wall and break his hand. And it was like, and then I began asking the boys I met and they all said kind of sheepishly, like, yeah, I did that. And some of them would like hang a poster over the hole. And I thought well, wouldn't it be nice to tell all these boys it would be a life skill not only to fix that hole but something to carry with you. And I called someone at Home Depot...
MARTIN: But that's helpful, though.
SILVER: It was very helpful.
MARTIN: It is helpful know...
SILVER: Oh, it is. Yeah.
MARTIN: ...that, you know, it's not lost your mind.
SILVER: Yeah.
MARTIN: That if your son does this that this is something that happens. Yeah.
SILVER: Yeah. And it's helpful for both parents and teens. And that's what we wanted to do in the book it's like it's normal. I mean, like it's not a great thing to punch a hole in the wall, but it's not like you're really some crazed person that nobody else is like, that lots of kids have anger when their parents have cancer and sometimes they express it physically. I mean, a punching bag is probably better than a hole in the wall. But it turns out it's not that hard to fix a hole in the wall, and so I thought, well, it would be a public service for all these kids to know, and for any girls that punch holes in walls too.
MARTIN: Well, here's the key thing, buy a wall board repair patch.
SILVER: Yeah.
(LAUGHTER)
MARTIN: I'll just - and it goes on from there, but let's just start there, and some sheet rock, all-purpose joint compound, aka, mud. And then, you know, take it from there.
Marc, I do have a serious question. And I do thank you for including that because I think that is important to take note of. But there is some, you talked about risky behavior.
SILVER: Yeah.
MARTIN: You can imagine a scenario where some kids would turn to drugs or to pleasure seeking in other ways.
SILVER: Yeah. Yeah.
MARTIN: Maybe to risky sex, just to kind of get away from the what's going on at home.
SILVER: Yeah.
MARTIN: And do you have some advice about that?
SILVER: Yeah. I mean it's very, very tough. I mean, kids who did that and confessed to us would begin crying or sort of - I'd ask them well, did it help at all? And they would just kind of, you know, shake their head tearfully and say no. So it really doesn't help. And I think that's a time when parents need to really still be parents. And I think a lot of parents feel like, oh, I'm dealing with cancer right now, I just can't be as diligent as a parent as I would normally be. And when you've got teenagers or any kids really, you still have to keep your eye on them. And if you see things that would cause concern under any circumstances; if grades are dropping in school, if, you know, if kids are disappearing, if you smell marijuana, you really need to be a parent. And as tough as it is when you're dealing with cancer and chemo and surgery, you still need to talk to your kid. You might propose visiting a therapist, if that's something you think is in order, which is hard. You can't convince a kid to go to a therapist against their will, but maybe you could say, you know, it would help you, it might help me too if you did this. Let's try two different doctors and see if one is appealing to you. Try it a couple of times. If it's not working, OK, I won't push it. But just to kind of throw it out there.
MARTIN: Maya, what about social media, the whole thing of having your business out in the street in a way that it would not have been 10 years ago? I mean, it's starting but not - I don't think it would've been as prevalent a form of communication as it was then. And you told, I get in the book these stories that you just you're shaking your head at one school where the - is the principal or somebody announced the child's parents was ill over the loudspeaker at an assembly. And you're just thinking, really? But what about this whole question of over-sharing or friends even thinking that they're meaning well by sharing your personal business?
SILVER: Yeah. I mean I think my recommendation would be to really be clear about who you want to know and how you want to tell them and, you know, how they should treat the news. And so, you know, I told my close friends and I told them I don't really want everyone to know, don't tell the whole school, don't tell everybody you know. And that was important to me that, you know, random person walking by me in the hallway didn't know that my mom had cancer, that it was just my close friends. And so, with social media there's a real danger there because, you know, news can spread a lot faster. It's a lot less controlled than talking to somebody in person or giving them a call, or even an email. I mean, it's really a different level of communication. And it's not something that was around when I was 15 and dealing with this but, you know, my advice to teens would just be to really be cautious about how you share the news there if you don't want everybody to know because you don't know who it's going to get passed onto and how it's going to get shared. And, you know, there's also a lack of understanding when you post something online.
MARTIN: And finally Marc, again, so thankful that your wife is doing well. But you do cover situations where the prognosis is not good and where survival is not likely. And I just wanted to ask briefly if you would just offer some thoughts about that, how that information should be shared. I know it's not going to cover every situation, but I did want to just raise the question.
SILVER: Those are very difficult cases we thought it was important to include in the book. And the amazing thing I guess, is when you meet these kids who've lived through it, it gives you hope and faith to understand that you have the strength to get through it as well somehow, if you face a dire prognosis for your parent. And one of the social workers we interviewed said he ran a bereavement support group and it was not the way support groups usually work. It looked like some kids who have lost a parent very recently and some who had lost a parent a few years ago, and some whose parents was actually still alive but not doing well. And what he said is like that defies all the rules of a good support group because you've got different people in different places. But for the kids facing, you know, a parent's possible death, it was very reassuring in a way to see these kids who'd lost a parent and there they were a year later and they were worried about homework and worried about being dumped by their boyfriend or girlfriend at school. So it kind of showed them that life went on, and I think that's a very important thing to understand throughout all this experience.
MARTIN: Well, thank you both for this. Maya, any final words of wisdom you have for us?
SILVER: The one thing we really wanted to emphasize is that you have to do things your own way. When you're a teen whose parent has cancer you've got to find your own coping mechanisms that work for you. You know, the feelings you're having our normal. Someone else, some other teen out there is guaranteed to be feeling the same thing you are and in your situation. And so it's all OK and, you know, just do it your own way, get through it your own way.
MARTIN: Maya Silver and Marc Silver are the authors of the new book, "My Parent Has Cancer And It Really Sucks." Maya was with us from Crested Butte, Colorado, and Marc was kind enough to join us here in our Washington, D.C. studios.
I thank you both so much for speaking with us. And our very best wishes to your wife and to your sister and to your family.
SILVER: Thank you so much, Michel.
SILVER: Thank you very much.
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