TED KOPPEL, host:
This is Talk of the Nation. I'm Ted Koppel in for Neal Conan.
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And we're broadcasting today from the Knight Studio in front of an unpredictable, live audience that doesn't know when to applaud and when to shut up.
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KOPPEL: I'll tell you when to applaud, hold on there. We're broadcasting today from the Knight Studio at the Newseum in downtown Washington. That's what you're supposed to be applauding. Go for it.
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KOPPEL: Thank you. For the past two years, my old friend, Leroy Sievers, has been keeping a diary. But unlike all of you who may jot down your private thoughts each day, Leroy has shared his ups and downs for all the world to see. His blog, My Cancer, on the npr.org Web site, has attracted a remarkable community of cancer survivors. Each one has drawn enormous strength from all of the others. At last count - and this is a truly miraculous number - at last count, more than 30,000 comments have been posted to the site.
For those of us who have worked with Leroy, a 6-foot, 5-inch force of nature, for those of us who accompanied him on many assignments around the globe, including crossing into Iraq with the Third Infantry Division at the start of the Iraq War, reading his latest blog entries has been wrenching.
Yesterday's began - and I'm going to read it for you now, then you'll hear from Leroy. It's scary, very scary.
(Reading): Trying to get up out of a chair or off the bed and you can't quite make it. Your arms or your legs are missing that last little "umph" that will put you on your feet and up on the walker. You have to sit back down, gather your strength and go for it again. It scares me because I know that some day, sooner or later, I may not be able to make that second try. Someday I may have to accept being bed- or chair-ridden, but there's no way of knowing when that might actually happen.
That was Leroy's blog yesterday. Leroy's candid commentaries for Morning Edition, his special on cancer on Discovery, and his visits to Talk of the Nation are all part of his gift to those who face cancer's challenges. Don't be defined by it, he has urged us all.
If you're a cancer survivor and you want to talk with Leroy, our number here is 800-989-8255. Our e-mail address is email@example.com, and you can join the conversation on our blog at npr.org/blogofthenation. And in a few minutes, we'll be joined another heroic person, Elizabeth Edwards. But first, my dear friend, Leroy Sievers, joins us from his home in Potomac, Maryland. How you doing today?
Mr. LEROY SIEVERS (Emmy Award-Winning Broadcast Journalist): Well, that's always a tough question to answer. The easy answer is, I'm doing OK, but it's tough.
KOPPEL: It's not only tough for you. I don't know, and I may be catching you unawares here, but Lori, your dear friend, your companion, your wife, wrote a really moving blog today in which she spoke of what it is like for those who support cancer survivors. Do you have it handy?
Mr. SIEVERS: I don't. I can look around. She's looking around all over the room right now.
KOPPEL: All right. Forget about that for a moment. The notion that - I mean, what you said yesterday, that the day may come when you're not going to be able to get out of that chair or get out of bed, it's got to scare the hell out of you.
Mr. SIEVERS: Oh, it absolutely does. We don't think of ourselves that way. You know, we've always been self-sufficient. There are things you take for granted. I cannot simply get up and go to the kitchen and get something out of the refrigerator. I have to think it through. I have to plan it. I may need Lori's help. It changes everything, and that's a huge change. I don't know how else to put it. It changes your entire life.
KOPPEL: I just want to give people a sense, Leroy, I mean, you and I, we talk often, and much of what we talk about has nothing to do with cancer. It's just reminiscing about some of the great places that we've been. You and I never thought that your death, when it comes, would come this way. We've been to too many crazy places together.
Mr. SIEVERS: Oh, sure. You and I have been in situations, whether it's Iraq or other places, where, at least I thought, death was probably pretty imminent, that things were not going particularly well and something bad was about to happen the next 10 seconds or so. But those - it's interesting, we could accept. That was part of what we did, part of who we were. This is different, and it's also, you know, it's been two and a half years. That's a long time to face your death.
KOPPEL: We want to give people just a thumbnail sketch. I mean, two and a half years ago, you asked the question that I guess everyone who is diagnosed with cancer asks and that is, doctor, how long have I got? What did they tell you?
Mr. SIEVERS: Absolutely, that's always the first question you ask. It's a silly question because no one knows. Silly is actually probably the wrong word. They don't have an answer. They can guess. The first answer I was given was three to six months, and you know, two and a half years later, here we are. But what's - not strange - I have a lot of cancer in my body but none of it is, in and of itself, life threatening.
So when we talk about that now, we're obviously talking about it because it's very serious right now. No one can tell me what's going to happen. Is it the overall burden? It's a huge burden on your body, but at what point does something happen? What happens? What's going to kill me? I don't have an answer to that.
KOPPEL: I think when you and I did the town meeting together, after the Living With Cancer program, and you were the central character of that program, I think a lot of people who saw you for the first time thought, man, this guy doesn't look as though he has a fatal disease. You're a big man. You looked robust, full of vigor, full of life. I'm going to tell people something now, I don't think you will mind my telling them this, you don't look that robust anymore, Leroy. I mean, the disease has taken its toll.
Mr. SIEVERS: What?
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Mr. SIEVERS: I don't look fabulous anymore?
KOPPEL: Well, you look fabulous. You just look slimmer. You're a slim fabulous now.
Mr. SIEVERS: That's certainly true. I mean, and I can see it, as well. I certainly feel it. I can tell in my body that it's taken a toll. I've lost a lot of weight, and it's something I always wanted to do and my doctors did not want me to do. You're right. No, I can tell, over the last two and a half years, it is getting to me, and that's part of what I'm talking about. What is happening to me? You know, what is going to happen to me? I don't have that answer.
KOPPEL: As the readers of your blog know, you had some scans a few weeks ago, and the news was lousy.
Mr. SIEVERS: Terrible.
KOPPEL: Talk about it; what was it?
Mr. SIEVERS: Well, for about the last six, eight months, we've been dealing with my spine. The cancer, apparently, decided it liked the taste of my bones, and I had three major surgeries and all sorts of problems with it. And that's really what we had been concentrating on, and sort of ignoring the rest of what was going on in my body. So it came time for what we assumed were routine scans and it turned out it's everywhere. It's in my liver, lungs, ribs, muscles, brain. The brain is a troubling one. So I had a little radiation on a couple of spots that were, you know, very troublesome. But there's not a whole lot more now I can do.
KOPPEL: Leroy, we've got a caller with a question. Smokey(ph) in Portland, Oregon. I think this question is going to resonate with you. Smokey, go ahead.
SMOKEY (Caller): Yes.
KOPPEL: Go for it.
SMOKEY: Well, I just - I'm a two-time cancer survivor, and I'm currently dealing with prostate cancer. I'm actually doing very well but sometimes I feel like the biggest burden I have is trying to be heroic, and you know, this projection on people with cancer that they have to somehow be brave, and sometimes I wonder why we have to be that way. I mean, I know that a lot of people say it beats the alternative and so on and so forth, but sometimes I actually question that. Does it really beat the alternative? And I just wanted to know, do we always have to be brave and why people expect us to always be brave? And I'll take my answer off the air. Thank you very much.
KOPPEL: Thanks very much, Smokey. Leroy, I know that question resonates with you, and particularly because you're such a big guy. Little guys like me don't - you know, the expectations of us are a lot less than they are of you big guys.
Mr. SIEVERS: There is an expectation that you have to be brave. There's a real sort of thought that you have to, you know - and I talk about it, we all do, you have to live each day to the maximum. That doesn't mean you have to go out and run a marathon or climb Mount Everest, but there is pressure to, you know, do, to live a full life. You can't always do that. Sometimes a full life, the best you can do is make it out to the couch, you know, if you're under chemo or radiation or something, and just sit there for a day.
That pressure, I think, we come up with ourselves. I think people want to be reassured by us that we're leading the best lives we can, and that provides some of that pressure, as well. It's hard. I mean, you definitely feel it but you can't always live up to it.
KOPPEL: I've got an email here from Ellie(ph), who is a cancer survivor. And Ellie says, "As I listen, and as a five-and-a-half year ovarian cancer warrior, I'm so pleased you mentioned his loving companion, Lori. I truly believe it is harder on those that love us and sit by our sides. They, too, are helpless and hopeful and full of love. I could go on and on." And she signs it, Ellie.
Some thoughts on those who sit by your side and hold your hand.
Mr. SIEVERS: Absolutely harder on them than on us. I know what's happening to me. I know how I feel. I don't express it particularly well sometimes, but the other person, all they can really do is worry. All they can do is try to, you know, help somehow, try to come up with something to help. It's excruciating. I can't imagine what it's like.
KOPPEL: Lori, in her blog, wrote, and I'm doing this from memory, about her sort of sleeping with one ear cocked and one eye half open.
Mr. SIEVERS: Absolutely true. Although, I have a loud voice, I - you know, I may not be cocked all that sharply all the time.
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She's nodding anxiously.
KOPPEL: Leroy, yeah, hang on for a second, we're going to take a break. I'm talking to my friend Leroy Sievers and in a moment, we'll be joined by Elizabeth Edwards. If you're a cancer survivor and would like to talk with either of our guests, our number is 800-989-8255. I'm Ted Koppel. It's the Talk of the Nation from NPR News.
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This is Talk of the Nation from NPR News. I'm Ted Koppel at the Knight Studio at the Newseum. We're joined by a live audience here, and I'm talking about living with cancer with my friend Leroy Sievers, and we're now joined by another friend, Elizabeth Edwards. She is a senior fellow at the Center for American Progress who has had her own public profile battling the disease. And she joins us from member station WUNC in Chapel Hill, North Carolina. Ms. Edwards, can you hear me all right?
Ms. ELIZABETH EDWARDS (Senior Fellow, Center for American Progress, Washington, D.C.): I can hear you, Ted. And it's great to be with you and particularly great to be with Leroy.
Mr. SIEVERS: Hi, it's great to talk to you again.
KOPPEL: Delighted to have the two of you together. Let me begin where we must begin, with old people who are battling cancer. How are you doing?
Ms. EDWARDS: Well, today I'm doing fine but I have an upcoming scan and just like Leroy, sometimes you think they're going to be, you know, this is just a usual, kind of, I do it all the time, but there really is no such thing. And if it was possible to hold my breath for a solid week until I had that scan and talked to my doctor, I would because I know that these are the days in which I find out whether I'm moving forward or moving backwards.
KOPPEL: Is there a moving forward with cancer?
Ms. EDWARDS: Well, I mean, it's possible for the size of the tumors to be reduced. When I was with Leroy and you a year ago with the Discovery Channel special on living with cancer, Leroy's tumors had been reduced in size. You could see an ebullience in him, you know, and so you look forward to those moments. You're not going to chase the disease away entirely. There are pieces of it that are too small for them to find. And until we have a cure that's not going to - that once you've got it in the way that he and I have it, we're going to always have it. But that doesn't mean that you can't move forward, you can't reduce the size. But each scan is another opportunity to find out bad news as well as good.
KOPPEL: I have to put this in the context of just yesterday, and we played - I don't know if you could hear the first hour of our broadcast. We played a soundbite that your husband gave yesterday in which he sort of left the door open for running for vice president. And you know...
Ms. EDWARDS: Yes, I heard your audience laugh about that.
KOPPEL: Well, I mean, they weren't laughing about him running for vice president, it's just...
Ms. EDWARDS: Laughing at Ken's jokes.
KOPPEL: Laughing and tap dancing around the thing, you know. When you are battling a disease like cancer and you made it very, very clear that you would be supportive of your husband, John, in his run for the presidency, being a vice-presidential candidate ain't quite the same thing. You feel just as supportive of that, if he decides he wants to do it, if it's offered to him?
Ms. EDWARDS: I guess there are a couple of - I mean, I'm supportive of what he chooses to do. I don't think that this is a likelihood. I think that he's being very polite and respectful, as I think he probably should be. But what he said numerous times is that this is not something he seeks. And given the time of our life, that seems to make a lot of sense to me.
KOPPEL: Let me go to a question from our audience. Brian has a terrific question. I'd like both of you to answer it, Leroy first. Brian, go ahead with your question.
BRIAN (Caller): You mentioned earlier in the show that you try not to let cancer define you. But when you talk about how it's such a burden to get out of bed in the morning and to have to get that extra "umph" to get to the walker, how do you not let cancer define you?
Mr. SIEVERS: You can't. It does. I mean, I am many things but I am a cancer patient. And gradually, one of the things you have to come to grips with is that becomes an ever greater part of your life, like it or not. That's how I am defined, that's how my doctors have to define me, that's how my body is defining me.
KOPPEL: Is that an evolution, Leroy, from a position you might have held two years ago?
Mr. SIEVERS: Oh, sure. A total denial before. It's like, you know, I can get around this, it's just, you know, having cancer is just one part of me. I can do all these other things. That has changed over the last two and a half years.
KOPPEL: Elizabeth Edwards?
Mr. SIEVERS: It hasn't won, but it's making a hell of a try. Sorry, Elizabeth.
Ms. EDWARDS: That's right. And - no, no, no - there's times when it doesn't control your life. You try to control it. Leroy had a wonderful post about cancer. I don't know that he used a gorilla imagery or not, but it's this thing that's a big part of your life and what you try to do is minimize the amount of time at which it yells at you, you have cancer, you have cancer. And you try - and so you try to keep that - sometimes it's easier. When your body's failing you or when you're in the middle of treatment, certainly right after a surgery, you haven't the energy to quiet it. And it does control so much of your life. But most of the time when you're not at those low points, you do have the capacity not to run it out of the house but to at least limit the amount of time in which it controls the conversation.
KOPPEL: Let me just ask...
Mr. SIEVERS: There are times...
KOPPEL: Go ahead, Leroy, I'm sorry.
Mr. SIEVERS: Well, there are times, you know, you can have friends over, you can be watching a movie, you can be doing whatever, where cancer isn't necessarily in the room. And there are other times where it's the only thing in the room.
Ms. EDWARDS: Mm-hmm.
KOPPEL: We've got a phone call from Stephanie(ph). Stephanie, I hope I pronounce the name of the town right. Is it Lewiston, New York?
STEPHANIE (Caller): Yes, it is.
KOPPEL: Go ahead with your question.
STEPHANIE: That's correct. Well, first of all, I'd like to thank you for doing this show. I turned 51 this past Sunday. I was diagnosed on the 30th with cancer. I had a routine scan, which showed it's in my liver. And there's - the doctors are not giving me much hope. I want to comment on a couple of things. Not being defined by cancer is very difficult right now. I'm not in denial. I'm planning my funeral. I'm taking care of things that I need to take care of, but it's always there in my mind. I'm trying to be the same person that I was but it's very difficult sometimes. People don't want me to cook or lift anything or do the things that I'm able to do right now. And I hope to be able to do them for quite a while.
The part about being brave that you were talking about before, that's where I'm at right now because I'm able to do that. But I understand that I won't be able to probably maintain that throughout. And that's difficult. I'd like to do this with some kind of dignity and strength. And you two are an inspiration. So mostly, without a question, I just wanted to say, thank you for doing this. This program is so helpful. I've called my family and said, you should listen to this. So thanks for putting this out there so people will understand what we are going through.
KOPPEL: Thank you, Stephanie. It's - I find that there is a level of understanding that exists - Elizabeth, maybe you would go first. A level of understanding that exists among cancer patients that those of us who do not have the disease maybe don't get.
Ms. EDWARDS: You know, I don't know that we - any of us could be as eloquent as Stephanie has been about wanting to pick up something herself and wanting to cook her own dinner or cook dinner for her family, to keep doing the things as long as she can, you know. And the brave part of it that Smokey had asked about earlier, it's partly our response to claiming some control. And if the minute we don't act that brave, the minute we let people see that this is really taking a toll on us, they want to take care of us.
And part of what we need is, honestly, as long as we can, to take care of ourselves, not to give cancer any more days than it's going to have. It's going to take some already. The question is whether we give it, hand over the days we don't need to. And Stephanie's determination to hold on to those days is really inspiring, and I completely understand it, and I have a complete connection with her based on that. I expect Leroy does and every person who suffers with cancer understands her need to have those days belong to her and not to the disease.
KOPPEL: There's another level of this, Leroy, that I'd like you to touch on for a moment. And that is you tend to be the bravest with the people you know the least well. And that means you tend to show some of your fears to the people which you know best and love best, so they tend to carry the heaviest burden.
Mr. SIEVERS: Oh, sure. And it's an odd thing. You find yourself comforting them, sometimes, more than the other way around. You know, I find myself saying, look, it's going to be OK. Well, we all know it's not, but that's, you know, that's the role you come into.
Just sort of a thought on the earlier thing, the most important thing I think anyone can give someone with cancer is a little bit of normalcy. It doesn't always have to be about cancer. You know, talk about movies, talk about politics, talk about sports, just something else is so welcome at times that, you know, our lives are not just the disease. That's not the only thing we are.
KOPPEL: I want to bring in another questioner here in the audience at the Newseum. Tory(ph)?
TORY: Hi. I come from a very close family in Connecticut, and my great-grandmother, my grandmother and my mother have all been diagnosed with breast cancer. My mother is the only one not to die from it. Thank God, she's in remission right now. But I still remember the day when my mom came home from the doctor's office and said she did have breast cancer and she'd need a double mastectomy, possibly a hysterectomy, and she'd be starting chemo. How do you both go about - when you had to tell your family, how did you do it and how did they react?
KOPPEL: Elizabeth Edwards?
Ms. EDWARDS: I had, of course, my older daughter to tell. And I told her. She went with me and with my husband when I had the biopsy, so we all found out together about the cancer. And I've been as honest with her as I know how to be. With my younger children, it was harder because they were very young when I first had the cancer and when it came back. I sat with them at the table and said, how many people at this table are not going to die? And they just sat there. Of course, they all know they're going to die, as well. I'm going to die, too, and now I know what I'm probably going to die of. There's no indication I'm going to die anytime soon. We don't - nobody knows. But nobody knows when anyone is going to die.
And so I tried to say everything that was true but not make it too scary. That doesn't mean they're not scared. They are scared and every once in a while, they'll open up enough for me to see that there's an underlying fear there. But for me, the most important thing is at every stage to be as honest as I know how to be with them. Maybe, you know, give them the primary school version, often referred to as the classic comic book version of cancer, but always to be honest.
KOPPEL: I have an email here from Nancy in Stockbridge, Michigan. And she writes, "A very close friend has been fighting colon cancer for the past four years. Of course, I love him and would do anything in my power to lighten his burden. He refuses most assistance but accepts frequent e-mailing in maintaining contact. My question is, as someone who is battling, what advice can you give me? I would move heaven and earth for my friend. I do feel helpless. What can I do?" Leroy?
Mr. SIEVERS: Just continue to be a friend. That's what's most important. I agree with Elizabeth, be totally honest. I think you have to be. For so many years, people didn't want to really talk about it and you have to, I think. You know, as difficult as it can be, I don't always want to talk about it but it's important to me that I do, that when the person wants to talk about it, talk about it. When they don't, don't. Just be the friend that you've always been to them, and that's the best you can do.
KOPPEL: I want to see if we can get a lot of questions in because have a great many callers out there. Aurora in Andover, go ahead, please.
AURORA (Caller): Hi there. Are you still there?
AURORA: I - my question is - and Elizabeth said some of it - I have had cancer for 17 years, and I've been three times told that I should put my affairs in order. And during the course of that, I have done so. But I have also been told that I have a very positive attitude and that's what's keeping me alive. But my assessment is that positive attitude only lets you enjoy each moment. I don't think it has any real effect on the disease or the survival thereof.
KOPPEL: And that would be a heck of a burden, anyway, wouldn't it? Because then the implication is if you don't survive, you had a lousy attitude.
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AURORA: Yes. And there are also people that are tying my surviving this long under such dire circumstances - because it is in lots of parts of my body - to a miracle. And since I am not religious, I tend to think it is just the luck of the draw.
KOPPEL: Leroy, do you want to respond to that? I mean, you and I have talked about that and related subjects many, many times.
Mr. SIEVERS: Yeah, that's sort of one of the questions. You're right. I mean, there is pressure of saying, you know, you have to have a positive attitude because if you don't, you somehow fail. A lot of cancer patients don't like the fighting analogy for the same reason that, oh, I was fighting the disease and I lost. You know, no one wants to think that way. You fight the disease as long as you can, and you have to take it at that.
The larger questions are the larger questions. And quite honestly, I don't have the answers to them. I am certainly looking. You and I have talked about that a lot, but I don't have them.
KOPPEL: I need to remind our listeners that you're listening to Talk of the Nation from NPR News. John, who's also here at the Newseum with us, you have a question. Please go ahead.
JOHN (Audience Member): Yes. Leroy, how do - or Elizabeth. How do you handle the situation where a healthy person will unintentionally say something that's insensitive? I have a little guilt because once I was at a friend who was dying of brain cancer and I made a comment, well, you know, I could go tomorrow, trying to cheer her up. And then after saying that I realized, though, perhaps that wasn't the right - best thing to say, and I felt kind of guilty about that. She did pass shortly after that.
Ms. EDWARDS: I have - our 16-year-old son died in 1996, and I had a lot of people say incredible things to me. And I got some wonderful advice from someone who had lost a brother. And he said, people will say the wrong thing but know that they intended to say the right thing. And I've always kept that in mind, however stupid the things are people say, and believe me, John, that was not the stupidest thing I've heard by some considerable distance.
I always know that they meant to say the right thing, and I think that all of us keep that in mind. There are times, probably, when I don't want to hear it. I mean, having been on the campaign trail, people will always come up to me and say, you know, I really want to give you a hug. My wife died of the same thing that you died of, and I don't know exactly what to say to that, you know. But I know what they're trying to do is make a connection.
KOPPEL: It's a premature condolence.
(Soundbite of laughter)
Ms. EDWARDS: Well, that makes me feel so much better then.
KOPPEL: Of course it does. Of course it does. Leroy, on the same question, insensitive comments?
Mr. SIEVERS: I'm not sure you really can. I mean, you have to be able to laugh about some stuff. I mean, there are funny things that happen. And it's like Elizabeth said. I know that if people say something that I could jump on and say, oh, that's offensive, they didn't mean it that way. I had what I thought was one of the great jokes ever that fell completely flat because I think people were afraid to laugh.
KOPPEL: Well, you know, the humor in cancer does sound like a dry hole, doesn't it? I mean, we'll get back to your joke in a minute. I've got to do a break here. This is Talk of the Nation from NPR News.
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KOPPEL: Right now, I'm talking with Elizabeth Edwards and Leroy Sievers. The subject: the roller coaster ride that is living with cancer. If you're a cancer survivor and you want to be part of the conversation, and even if you're not, our number is 800-989-8255. Leroy, you were going to tell a cancer joke.
Mr. SIEVERS: Well, I'm not sure it's a cancer joke. It's just funny things that people say. The first time I was diagnosed, went to, you know, to get everything in order and wanted to do a will and sat down with a lawyer who said, you know, boy, the estate taxes, you know, all of this is going great. All you have to do is live another two months. And...
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Mr. SIEVERS: I sort of paused, and thought, well, that's not necessarily a given, but he had no idea.
KOPPEL: I mean, did he - but he knew you have cancer, right?
Mr. SIEVERS: No, he didn't, actually.
KOPPEL: Oh, he didn't know that, got it.
Mr. SIEVERS: So I told him and his face fell, and he felt terrible. So I said, look, this is fine.
KOPPEL: All right.
Mr. SIEVERS: The cancer joke I was going to tell, I'll make it quick. There's a joke in broadcasting that, you know, broadcasting is more important and more complicated than brain surgery. Well, I had had brain surgery and at one point was in a meeting with a line of staples down the side of my head where a tumor had been removed. And I explained to people, I said, look, I'm one of the few people in America that actually knows the difference between broadcasting and brain surgery - sort of paused for the laughter, and it was dead silent.
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KOPPEL: Yes. I can understand that.
Mr. SIEVERS: It's OK to laugh about it.
KOPPEL: Sometimes it's important to laugh about it but again, I guess people are more concerned about offending than they are about having a chuckle. There's an e-mail...
Ms. EDWARDS: I have to...
KOPPEL: Yeah, go ahead, please.
Ms. EDWARDS: I was just going to tell you, Ted, that one woman wrote me one of the funniest things that I'd ever gotten, which I hesitate to introduce anything that way, is - well, she said that her chemo, she was really regretted that her chemotherapy made her look so much like Dick Cheney.
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KOPPEL: Well, I don't know what she looked like before, do you?
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Ms. EDWARDS: I assume that she didn't look like Dick Cheney, so that was...
KOPPEL: Here's an e-mail from Bill in Berkeley. "In 1996, I was diagnosed with cancer at the base of my tongue and then lymph nodes at both sides of my neck. Contrary to what was said on your program, my first question was not, doctor, how long do I have? Also, when my doctor wanted to tell me the odds or my chances, I interrupted to say that I didn't want to know. My view was that I would have to assume that I would be in whatever percentage survived and would never know if I was proved wrong."
Thoughts from either one of you? Elizabeth?
Ms. EDWARDS: I don't - I have to be sympathetic with this. I go back and forth about whether it is I want to know. One thing I do know is that the numbers that we get are very unreliable. What you hear are 10-year statistics. Well, medicine 10 years ago was nothing like it is now. A lot of the medicines - in fact, I doubt very many of the medicines that I'm getting, maybe that Leroy's getting, were available 10 years ago. So, you know, the prognosis should be better now than it was for someone who got cancer 10 years ago.
And also, you know, every day - that's why I so want Leroy to hold off, you know, I so want him to make it through this most recent crisis to see that ebullience again because I just feel we're on the verge of so much. And certainly, I can understand wanting to believe that those odds have absolutely nothing to do with me.
KOPPEL: Leroy, we've got a question here that, I'll confess, you and I have talked about. Haven't done anything about it but we've talked about it. Clemencia(ph) in Fayetteville, Arkansas, are you still there?
CLEMENCIA (Caller): My name is Clemencia Convers(ph). At the time I was in Florida - I'm originally from Colombia. I was 38 years old when I was diagnosed with stomach cancer, single parent with two kids. My son, Sergio(ph), was 15 at the time and Kiko(ph) was 8. So when I was told this, my whole world crashed. I didn't what to do. I didn't know - well, my family is in Colombia and I was thinking, what can I do?
Thank God I had awesome doctors and after I went through surgery - and this is a decision that I had to take within a week. My mom flew in and my sister-in-law to take care of me. And one thing that saved my life, I think, is medical marijuana, my doctors and my friends. And another thing that I think is very, very important is to be able to talk about it. Take that energy that the word cancer has and knock it down. Talk to everybody about it. Try to tell people, hey, did you have yourself checked? Whatever type of illness you think you have, don't just think you have it. Just go for it - go have it tested. Go to the doctor. Let him know.
But one thing that I want to voice out is to take that awful name that the media and everything has done with marijuana because I got rid of three very, very scary drugs just by having medical marijuana, which you can have it - either you smoke it but if you don't like to smoke, there's something called Merinol, which is the extract. And you're able to - I was able to sleep. I used to take pills to sleep for pain, for depression, for this, for that. And I was more scared of pills and be addicted to them if I survived cancer. And after my first...
KOPPEL: Clemencia, I'm going to cut you short because I think we have the thrust of what you were talking about, and I thank you for sharing with us. You know, it seems strange, with all the drugs that they pump into you, with all the drugs they give you, with the radiation, with the chemo, that there should still be this enormous public sensitivity and official sensitivity about medical marijuana. Leroy?
Mr. SIEVERS: Yeah, that's absolutely right. It sort of seems to be in the shadows a little bit. A lot of people have asked about it. I have asked only superficially and quite honestly, it's something that I need to know more about. If it would provide relief, that would fabulous.
KOPPEL: Elizabeth, you could probably screw up John's political career just by saying that you toked up a couple of times here.
Ms. EDWARDS: I've actually - though I'm exactly the age, I'm 59 now, exactly the age that marijuana probably would have been part of my history, I'm actually allergic to smoke so that's not part of my personal history.
I think that there has to be a change in the law so that the FDA can examine the efficacy and safety of medical marijuana so we can get this issue off the table. If it's useful, then it should be available. If it's not useful, then we should quit dancing with these questions. And like Leroy, I don't know the answers. And it seems to me that just because it's an agricultural product shouldn't be a reason why the FDA can't consider whether or not it could be used.
KOPPEL: Let's see if we can get a couple more phone calls in. Bob in Minneapolis?
BOB (Caller): Hello. I'm an old geezer who was just recently diagnosed with prostate cancer.
KOPPEL: When you say old geezer, how old a geezer are you?
BOB: I can't hear well. I hope I'll be able to listen to your responses after I hang up and turn up my radio. But with respect to your last call, with respect to medical marijuana, there's another drug problem that people face. Many do not realize it, and that is to get oxycodone or oxycontin or hydrocodine, the synthetic narcotics that alleviate the pain. It's usually prescribed with acetomenephin attached. And the acetomenephin is toxic to the liver. It destroys more liver than anything else, including booze.
But the reason it's attached, I have been told, and I would love to have someone confirm it, is that it makes it more difficult for the drug dealers to break it down into the more beneficial substance used in the drug trade. If you could get oxycontin without the acetomenephin, the narcs are all over the doctor who prescribes it - doctor or dentist. But my position is, and I hope you folks can hear me because I won't be able to hear you until I turn up my radio.
I was just diagnosed with prostate cancer. I don't know if I'm on foot or horseback. I'll be 80 in a couple of months. When they look at the old geezer who gets cancer, the point of view is, essentially, why don't you check out before you cost us so much money? I mean, there is no concept - the young folks who have been on your program, their point of view is, they live with cancer but their life is indefinite. The point of view that is imposed upon us older folks is, why don't you just quietly check out?
And I don't know what to face, whether to tolerate a maybe prolonged and mild state of metastatic cancers here there and everywhere, or undergo draconian measures with radiation or surgery. The surgery is left out.
KOPPEL: Bob, I'm in a difficult position. Let's fade Bob out. Bob, I hope you'll forgive me for interrupting you, but you're giving me a difficult problem here in that you can't hear me. But Bob has raised an exceedingly serious issue and that is, you know, older people given - I mean, there have been political debates about this for many, many years, where given the limited resources that are available, sometimes the question is asked, do you give - do you try less hard with an older patient than you try with a younger patient? Elizabeth, any thoughts on that?
Ms. EDWARDS: Well, Bob seemed pretty vigorous, I have to say. But I think there's immorality associated with our rationing health care based on the amount of life that you - that people are projected to have left. Obviously, if you had only one vial of medicine and you had a child and you had Bob at 80, the vial of medicine is - would - I assume Bob would want it to go to the child.
We don't have just one vial of medicine, and what Bob's talking about is an attitude that people have towards him that these - that really aggressive ways of attacking the disease should not be used for him. And I think that is totally wrong, and I have not seen it among people that I get chemotherapy with. I see all ages, including friends of Bob's who are sitting with me, getting the same kinds of treatments that I'm getting. But I have heard about this attitude, and I find it discouraging that we would have that idea that we have the moral high ground to make that kind of decision.
Oregon did this several years ago, and they were trying to do the right thing in terms of rationing health care, generally, and what was going to be the most productive ways to use their health-care dollars. But when you talk about the age of the patient as a characteristic, well, what about, you know, some other conditions that they have? What if they're blind, maybe it wouldn't matter so much it they - you know, or what if they had no children? Do you give more care to someone with children than you do without children? You really find yourself on an extraordinarily slippery slope.
KOPPEL: You're listening to Talk of the Nation from NPR News. Let's go to another question here from an audience member. Would you identify yourself?
ALAN (Audience Memeber): My name is Alan Rothstein(ph) from Ocean Side, New York. My wife is a survivor and as we speak, the Ovarian Cancer National Alliance is meeting right here in Washington. They're meeting with doctors and research scientists, and they're discussing new methods in treating cancer. I want to know if any of these methods may help you or what you think of the future in treatments?
KOPPEL: It's an interesting question, Leroy, because I know we've talked about this also, often. Sometimes you say, well, I have to keep going because maybe in a month, in two months, in six months, something will come along that has properties that just don't exist right now.
Mr. SIEVERS: You hear that from the doctors a lot. It's just hang on, one more month, one more week. You know, six more months. You never know what's coming down the path. I mean, in some basement somewhere, is some grad student about to make a breakthrough? Maybe so. On the other hand, maybe not. But they use that - not use it - it's real. They're making tremendous strides. Some stuff works, some stuff doesn't, and the idea is that, you know, you'd hate to, I guess, just sort of give up just as something comes up that will actually help.
On the other hand, that can be frustrating, as well. There are reports in the media all the time of new breakthroughs, of - you know, here's something new. Here's a new study. Here's a new drug. And then you get into it and it's like, yeah, but it's not for you. So that's part of the roller coaster ride.
KOPPEL: Does it help you to know that you have been - I mean, really an inspiration to so many people out there? I mentioned that at the top of the program, 30,000 people have checked in here. And I mean, it's - that's a huge number of people for whom you are something of a role model, Leroy.
Mr. SIEVERS: I have to admit I have some - not problems with that, it's a little hard for me to understand or to get my head around. I like to think that it's all of us together. It's not just me. I get as much from those 30,000 people and all the others out there as I hope they do from me. We're all in this together and that, you know, I hope that comes through every day.
Ms. EDWARDS: The - you know, the 30,000 number for Leroy ignores the number of people who we used to call "lurkers" on the Internet. The people who just read but don't comment. And I think that one of the things that Leroy represents is not just that he gives people an opportunity to open up, and they do, so many of them do on his blog, but that he is the voice for people. That sometimes they feel they don't need to speak, that he's speaking the words that they're feeling, and that's enormously important because not everyone has the capacity to turn those fears and the desperation and even the happy moments, the appreciation for Lori or the appreciation for cookies somebody brought by, into words. And he does have that gift.
And so I understand his inability to grasp his importance to much larger than 30,000 people who he speaks to every day. But it is there and palpable.
KOPPEL: Elizabeth Edwards, thank you very, very much. It was really gracious of you to come and join us today. I want to add one thing. If you didn't get a chance to ask Leroy your question during today's program, you can ask him online in a chatroom at npr.org.
Members of the My Cancer community have been sharing their experiences during today's show, and Leroy will join the chatroom in just a few minutes. Again, this conversation continues online at npr.org. You're listening to Talk of the Nation from NPR News.
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