ANDREW:
Hello, and welcome to the American Cancer Society's Cancer Survivors' Network, the service created by and for cancer survivors. In Seattle, I'm your discussion leader, Andrew Schorr. Joining us from New York City is Barbara Barrie, a veteran television, screen, and stage actress, and also a colon cancer survivor. Currently, Barbara is well known for her portrayal of Brooke Shields' "Nana," on the hit NBC sitcom, "Suddenly Susan."

She's been actively working as an actress for the past 35 years and in that time has been nominated for an Academy Award, an Emmy, and a Tony. And she won an Obie, a Drama Desk award, and the Best Actress Award at the Cannes Film Festival. But, all the awards in the world could not have prepared Barbara, now 68 years old, for colon cancer. Since that time, Barbara has been through three operations, chemotherapy, and radiation. Now she has a colostomy, but, she still wears bathing suits and leotards.

She divides her time among acting, writing-she's written three books-and activism about colon cancer. Barbara, thank you for being with us today.

BARBARA:
Thank you for having me.

ANDREW:
Over the next few minutes Barbara, I know we can discuss some very important issues for people. Issues such as: finding your own way of handling the experience of diagnosis and treatment; bringing colon cancer out into the open-which is often hard, and maybe especially hard for women; the importance of monitoring your healing; the gift of clarity that can come over time when you have cancer; and also how life's experiences can turn you into an activist. Maybe first, you could tell us how all this started for you?

BARBARA:
Well, it probably started 25 years earlier, but it was not detected, even though I had lots and lots of tests. It just became really apparent in 1993, when I finally had really direct symptoms and had a sigmoidoscopy and it was clear that it was cancer.

ANDREW:
When you say direct symptoms, bleeding and...

BARBARA:
Bleeding, loss of weight, change in bowel habits. Actually, I got extremely thin and didn't recognize it as a symptom.

ANDREW:
And, I understand that, at that time, you had no idea that there was a family history of this problem. That was unknown to you at this time.

BARBARA:
Yes, it wasn't known to me at all. I couldn't understand why my cousins were so angry with me. And, it turns out they were angry with me because they thought I knew we had a history of colon cancer. Of course, I didn't because no one had told me. They knew, but I didn't know. And so, when finally I was diagnosed, that's when I found out that, back for three generations, we've had bowel dysfunctions.

ANDREW:
Tell us, what is the name of your book and what led you to write it?

BARBARA:
The first issue of it was a hardcover book called "Second Act," which is also about my life in the theater. Now it's in paperback and it's called, "Don't Die of Embarrassment" and it describes my whole life during that period and even before that period.

ANDREW:
Now, that was sort of a rocky time for you wasn't it? Tell us about that.

BARBARA:
Well, I had a surgeon who shall be nameless, who never should have performed the operation because he is a vascular surgeon. He should have refused to do it. He was recommended to me and he certainly seemed to have gotten the cancer, but he did not know how to finish the operation and give me a really respectable and easy colostomy. So, then I had to go to a second surgeon at a different hospital for a third operation. He was a genius and is a genius, and performed the operation that really gave me my life back.

ANDREW:
Now, you have become an activist through all this. What made you start thinking that you need to tell a story to others? Why did that happen?

BARBARA:
Well, first of all, there was no book like this. There was no book that really talked about words that people don't want to hear, like bowel and rectum and colon and feces and colostomies, you know. Everyone shies away from that, Americans particularly, and I had questions to ask and I really couldn't find the answers and I couldn't find anyone who'd had a similar experience.

And, a lot of it is very funny. I mean, while you're going through it you have to see the humor of some of it. I thought, "Why don't I write this?" Because no one talks about it. And, I started to write it, actually, when I was still in chemotherapy.

ANDREW:
And, I'm sure you've met people along the way who've read it. When you meet colon cancer survivors, what do they say? Has it touched them?

BARBARA:
Well, yes, a lot of people have relatives who were really in hiding until they read this book. Who didn't want to come out of their houses because they had a colostomy, and naturally thought there was something to be ashamed of. Or they didn't know how to manage it or, you know, it was not a good operation.

And, a lot of doctors I hear now give their patients this book routinely, when they're going in for surgery. Even if it's not for a colostomy, just regular colon cancer surgery. And, I've gotten hundreds and hundreds of letters from people who say, "Thank you for writing this book. I'd never said the word. My husband had never said the word. I've had a colostomy for 30 years, and we've never talked about it."

It was really a hidden subject, but as you know, March is colon cancer awareness month, by mandate of Congress. There are all kinds of people and organizations working for colon cancer prevention, but we have our own month, now, which is very exciting.

ANDREW:
Barbara you're very public about it now. But I imagine there was a time, a process you had to work through to feel comfortable talking about it within your family and then, later, publicly. Tell us a little bit about that.

BARBARA:
I didn't tell anybody I was sick, and I didn't tell anybody I had the operation. But once I started to get better, I certainly told everyone what I had.

I never had a problem saying it. What I had a problem with was being an ill person. That's what I didn't like.

ANDREW:
Was the book part of the healing process for you?

BARBARA:
I imagine it was, actually, because first of all, there's a lot of funny stuff in it. And, you know, when you laugh and you remember funny things, it's very helpful. But I just love to write anyway, so it was a terrific experience.

ANDREW:
Now, I understand, when you were making the decision to write the book, you were riding on a bus with your husband. Maybe there was an incident there maybe you could tell us about?

BARBARA:
Oh, you're right. I forgot about that. I was in chemotherapy or radiation, I can't remember which, and I had an accident on the bus where the pouch actually got perforated. By me, actually. I felt that was the way to do it. And it was a wrong decision, and it was pretty upsetting on the bus. The woman next to me really thought I was either a dog who had done something terrible or she had stepped in something, and I started to laugh so hard when I got off the bus. I said to my husband, "I've got to write this down. This is just hilarious." And, I think you're right. That was the night I decided to do it, because she was so funny, she kept looking at me as if she wanted to kill me, and I thought, "I understand her." And, I wanted to say to her, "Listen, it's me. I have a colostomy. What you're smelling is definitely me, and I'm really sorry." But, I thought I'd better not do that and we got off the bus and we just howled with laughter.

ANDREW:
I know you've told me previously, it's really a minority of colon cancer or colorectal cancer patients who have a colostomy. But even though you are one of the smaller percentage who do, it doesn't hold you back at all?

BARBARA:
Oh, no, no. As a matter of fact, I'm so much healthier now than I was for the ten years preceding that, you know. I dance, I go to the gym, I work out, and I have unlimited energy, so it's really boring. I have to take something to calm myself down at night. I'm actually stronger and my muscle tone is better than it was when I was probably 30. It doesn't hold me back at all. People have fewer and fewer colostomies now because they've devised new ways of doing it.

ANDREW:
Let's talk about your acting. This experience, has it brought any clarity, if you will, to your acting? Or, changed you in your approach to things that you do on stage or television?

BARBARA:
Yes. They say it takes 30 years to make an actor, to really make an actor, and I've been acting 40 years. And, just since the cancer, I've learned to trust myself completely. I have a much more relaxed and clear view of what my craft is. I'm not frightened anymore. As my son said to me, "Mom, the worst has happened to you. What could happen on an opening night?"

You get a little nervous. And, I just have a wonderful sense of my craft and what I've lived through and what I can bring to the stage. I don't have to struggle for it anymore. If a moment doesn't go right, I'm perfectly willing to say in rehearsal, "I need help here. Somebody help me. Let's talk about this." And, I just get to the point more quickly, in everything, particularly in acting. Acting is doing, it's not pretending, it's doing. And, I find I can do a lot of stuff on stage. It's very organic and very natural, because once you get cancer, you think, "Well, I don't want to fool around anymore, you know. I don't want to be superfluous about anything." And, it has changed me enormously.

ANDREW:
And of course, beyond the acting, tremendous activism. I know that you're vice president of a group out of Chicago. Is that right?

BARBARA:
Yes. It's called "Stop Colon and Rectal Cancer." "Stop CRC" is what it's called, and we are a new foundation. I'm the vice-chairman. Thank God, somebody else is the chairman. It is an organization dedicated to telling people that if they get screened early for this disease, they never have to get the disease.

ANDREW:
So, for our listeners who are not celebrities such as yourself, they still can do a lot in raising awareness just in their own communities or in their families. Wouldn't that be right?

BARBARA:
Well, yes. I mean, all you have to do is say to everybody, "Have you had a colonoscopy?" Do you have a family history? Do you have any symptoms? Get a colonoscopy the minute you're 50. Get a colonoscopy before you're 50 if you have a family history or if you have any symptoms at all. The problem is, a lot of HMOs won't pay for it if you're under 50. Well, they won't pay for it really if you're under 65, and then Medicare takes over.

What one has to do is say to the doctor, "I demand this test. I don't care whether I have symptoms or not. I demand this test." The Colorectal Cancer Roundtable, which is an organization that meets twice a year, and I'm a member of that, has decided that the really key word is "demand." I demand this test.

Because doctors don't want to give it, they don't want to refer you, they don't think it's necessary. But, if you have even an inkling of a family history, you should tell everyone in your family they must get tested. You must get tested. You must tell your friends to get tested. I mean, I know so many people over 60 now who are getting tested only because they read my book. They never would have done it. You can help in every way. Most communities have support groups and there is an organization called the United Ostomy Association, UOA. We are ostomates, and if you're an ostomate you can join that group and do a lot of good.

ANDREW:
When someone is diagnosed with a condition like this, though, often they go through a period of anger. A "why me" kind of feeling early on. How did you get past that, or what advice would you have for others?

BARBARA:
Oh, I didn't say, "Why me?" I knew I had symptoms. I wasn't kidding myself. I mean, I was kidding myself. I knew I had symptoms. I knew I was ignoring them the last year, and when the other shoe finally dropped and they said, "You have colon cancer," I went, "Oh, yes, uh huh." Because I figured I did, you know? I didn't say, "Why me?" I did it to myself. I ignored my symptoms. In my case it was an illness warrant, but if you really wait too long, you can die from it, you know.

I think people maybe encouraged the illness to happen. One, by not getting tested. Two, by smoking, which, of course, we all know is responsible for lots and lots of cancers other than lung cancer; by bad health habits, not exercising. And, if you have a genetic history, there's nothing you can do about it but get tested and catch it early.

ANDREW:
Barbara, you said you had symptoms. What were those symptoms that you were ignoring?

BARBARA:
Well, I was bleeding from the rectum. I was traveling all over the world, and I thought, "Oh, it's the travel, it's the water, it's...you know."

I was losing weight like mad, and thought I looked terrific, because I suddenly got so skinny. And my bowel habits changed. It was either on or off, or nothing or everything, and I couldn't figure out what that was. But, I really knew what it was. I knew I was not paying attention, and the symptoms were very, very clear. They were never clear until that year, and then they were very clear.

ANDREW:
What would you advise other people, as far as their vigilance for a recurrence? Or to empower them if they are going through colon cancer or have been treated? What would you tell them so that they could really get the best health care?

BARBARA:
Well, the first thing you have to do is ask the doctor some questions if you're going to have surgery. Questions might include: How many of these operations have you performed in your life? How many have you performed this last year? How many have you performed this month? And, how many patients are successful? Because, that's the most important thing.

It's even better to find a doctor who only does colon surgery and colostomies.

You have to go to a guy who knows the gut, really knows the gut, and it's up to you to find him. I didn't do that. I didn't ask enough questions. And, once you find the doctor, then you have to really participate in your own illness. You have to ask questions. You have to be active. You have to go on the Internet and find out what are all the newest medicines? What are the clinical trials? What kind of chemotherapy? What blends of chemotherapy are better? You have to be an advocate in your own illness, and not just be told what to do. My doctor says, "If a patient doesn't ask any questions, I get very nervous, because I know he's not going to be an active participant in his own wellness." And once you're sick, you have to fight to get well, and not be passive about it.

ANDREW:
After treatment for colon cancer, how do you proceed now in making sure you stay healthy?

BARBARA:
Well, I have to go for checkups, for one thing. I think the main thing for staying healthy is lots and lots of exercise, and really great food. By that I mean the usual fruits, vegetables, lots of soy, lots of tofu, very little dairy, lots of liquid- water, juice. There are certain kinds of foods like artichoke hearts, asparagus, grapefruit, flax, which is like a cereal...all the things that make sense to keep your colon healthy. And, that means not eating fatty things, although God knows I cheat and do it all the time, but the ideal is not to do it.

ANDREW:
For someone who's been treated for colon cancer, they might want to put this all behind them and just go back to as much of a normal life as they can. Rather than think of themselves as a cancer survivor, just think of themselves as having an illness which has been treated. But, it sounds like that's not the way you carry on at all. It's very much top-of-mind for you.

BARBARA:
Well, it is, because I suddenly realized that since I was one of the first people to speak up about it, this is kind of my legacy. I mean, acting is great, but you know, nobody remembers what you do unless it's on film. There is a lot of stuff on film, and my children are wonderful, but they're going to go on and have lives of their own. So, what I've chosen to do is to leave this legacy. Which is to bring this illness, and certainly the colostomy, often the result of the illness, out into the open. And, so the people will say, "Oh, yes. I remember, there was somebody, what was her name? Oh, yes. Barbara Barrie. She first said the word colostomy on television."

And when Senator Kennedy introduced his bill to have the HMOs pay for all colonoscopies over the age of 50, I went to Washington and appeared in front of the cameras with him. He said, "Oh, Barbara, say all the words you say that shock everybody." And I said, because I had a little speech prepared, and I said, "You really want me to?" And he said, "That's the way to do it."

So I did. I said, "If you're bleeding, and if your rectum isn't right, if your bowel habits are..." I thought the cameramen were all going to fall on the ground, they were so embarrassed. But, you see, that's the problem with this disease. People get embarrassed by it and they won't go and be treated. God knows I wasn't embarrassed by it. I just didn't want to fool around, you know. I was having a great time. I was shooting a movie. I didn't want to go and be told I had cancer. But, you can't do that, you really have to monitor your health and pay attention.

ANDREW:
And there you are, a woman, talking about all these things in front of national TV. Often women might think that using any of those words or talking about that would be very unladylike.

BARBARA:
Unladylike? We're past the women's movement now. I don't think people really think that too much anymore.

ANDREW:
So, these are things that need to be out in the open for sure.

BARBARA:
Shirley Temple Black was the first person who said, on national television, "I have breast cancer." It wasn't Betty Ford, it was Shirley Temple Black, child star. One of the greatest stars of the world ever. And, she was so brave to say that, because first of all, people never said "cancer" and they never said "breast," not in public. She said it and she set the whole ball rolling. People don't remember that, but she did it. And that was a long time ago. Of course, any illness like this, which is considered embarrassing, really has to be brought out and made verbal by everyone who can possibly do it.

ANDREW:
Okay. Well, I want to thank you so much, Barbara Barrie, star of the NBC sitcom, "Suddenly Susan." Thank you so much for participating, and giving your inspiration to other people who are dealing with colon cancer and encouraging them to speak out about it. I know it can make a real difference. Thanks for being with us, Barbara.

BARBARA:
Thank you for asking me all those good questions.

ANDREW:
It's a pleasure. For the American Cancer Society's Cancer Survivors' Network, and from our HealthTalk Interactive Studio in Seattle, I'm Andrew Schorr.