Colostomy and Other Adventures
by Cindy Phiffer
For over two decades, celebrities have entrusted Coping® to tell the world about their personal experience with cancer. We are proud to present this exclusive interview from our archives and hope that it will inspire and encourage all who read it. This article was originally published in Coping with Cancer magazine, May/June 1998.
When Barbara Barrie addressed the American Digestive Health Foundation (ADHF), it wasn’t as Brooke Shields’ Nana from Suddenly Susan, nor was it as Barney Miller’s wife, Elizabeth. It was as a cancer survivor.
“When we have questions,” she instructed the roomful of healthcare professionals, “please answer them.” Who was this diminutive woman to give such directions, and what was her motivation for the role of assertive patient advocate? Perhaps it was one of several unpleasant side trips she took on the way to becoming well again.
After living with obvious symptoms of a digestive disorder for quite some time, Barrie finally summoned the nerve to seek medical advice. This in itself was very difficult for the veteran actress, who had developed a philosophy that illness was a form of weakness.
The doctor recommended a hemorrhoidectomy. When Barrie asked “How do you do this? Where do you enter? What kind of instruments?” his reply was patronizing. “Why don’t you just leave that to me, little lady?” She got up and walked out, never having the operation which might have prevented the appearance and growth of cancer which would be found 15 years later.
At the recent Washington, D.C., meeting of the ADHF, participants celebrated the recent Congressional ruling requiring Medicare to pay for colonoscopies for people over 50, whether or not there are symptoms. At this gathering, Barbara Barrie’s mission to educate others about colorectal cancers gained a momentum which is carrying her beyond the pages of her book Second Act: Life After Colostomy and Other Adventures.
If Plan A had been denial, and Plan B had been procrastination, Plan C appeared to be unavoidable.
“This is the thing I learned, much beyond the book,” she explains, her passion for the subject adding a certain energy to her voice. “Colon cancer is a disease that never has to happen. If you’re screened early, particularly if you have a family history... it’s a very detectable disease.”
(left to right) Kathy Griffin, Brooke Shields, and Barbara Barrie as Nana on NBC's Suddenly Susan.
photo by Paul Drinkwater)
With a voice that is powerful by its clarity, rather than its volume, the 66-year-old mother of two becomes as animated as Alemene in Disney’s Hercules. “Over 65,000 people die of it every year. It’s the second most fatal cancer after lung cancer. Did you know that?” she asks, making the facts interactive by pulling the listener into the scene. “They think they can reduce the deaths in a very few years to 40,000, and in 10 years to none. This Foundation (the ADHF) intends to wipe out this disease. Now that’s amazing.”
It is just this sort of enthusiastic honesty that makes Second Act, her third book, a joy to read. The story of Barrie’s years of procrastination and denial, two bad surgeries, the constant struggle with whether or not to tell even the closest family members, and a heroic attempt to heal despite an uncooperative physician is a no-holds-barred glimpse into a subject which many have witnessed but few have discussed.
“I was so afraid of having to think about wearing a pouch,” she says today. “It was something nobody talked about. People say, ‘I’ve had a mastectomy,’ or ‘One lung is partially gone,’ but they don’t want to say, ‘I had cancer of the rectum.’ That’s just absolutely stupid. I thought, ‘What’s the big secret?’ That’s why I wrote the book.”
The book’s subtitle, Life After Colostomy and Other Adventures, was a bone of contention between the author and Scribner, the publisher. She was adamant about using “adventure” in the title. This analogy was pulled straight from the bag of tricks Barrie used when her children, now in their twenties and thirties, were small. “We’d have these horrible vacations,” she recalls, and dry wit simply crackles in the voice of the storyteller. “The car would break down, and I’d say, ‘We’re having an adventure!’”
It was just this mixture of tenacity and creativity which won the battle with Scribner. “I told them, ‘It isn’t a book about life after a colostomy,’” she explains. “It’s about life with a colostomy. It’s acting. It’s traveling. It’s family relationships. It’s like going on an adventure.”
Barbara Barrie’s adventure with cancer has been filled with as many plot twists as a major motion picture. After receiving a diagnosis from a renowned, respected physician, she prolonged the agony by seeking a second opinion, not for assurance but for avoidance. When she found out that the original physician would have been leaving the country immediately following her surgery for a much-needed vacation, Barrie had just the excuse she needed.
“I think people should get second opinions,” she says, “but I think I was avoiding the whole thing. He was going away, and I thought, I don’t want to wake up from surgery and have him in the Pacific somewhere.”
It wasn’t a lack of trust that sent the extremely active woman in search of another doctor. “I knew he was the best,” she admits. “I think I was praying that somebody would say, ‘You don’t have to have a colostomy.’”
If Plan A had been denial, and Plan B had been procrastination, Plan C appeared to be unavoidable. The second doctor echoed the first. According to Barrie, “He said, ‘It’s just too low. We have to do a colostomy, and we have to remove the rectum.’”
After much debate over whether or not to inform her children of the upcoming procedure, Barrie’s best friend, her husband Jay, convinced her that they had a right to know. So with a parent on each phone in New York, the couple called Aaron and Jane, then a comedy writing team in California. The “kids” took the news stoically, trying to hide their real feelings to protect the woman who had always been a pillar of strength.
But even at such a rough time, the delightful sense of humor that mother and son share was obvious. In a passage from Second Act, we are invited into the moment...
“...you know, it’s a kind of relief.”
“Relief?” they both repeated.
“Yes. It’s as if the other shoe has finally dropped — I’ve always had so much trouble in that area, as you know.”
“You mean all those hours in the bathroom?” asked Aaron.
“Yeah, that and a lot of other things,” I said, not wanting to go into details that might further upset them.
“Well, I don’t get it,” said Aaron. “How will you sh—, I mean...?”
“How will I defecate?” A little vocabulary lesson in the midst of a crisis.
“Oh, yes... good word, Mom,” said Aaron. He was trying to lighten up, too. “How will you... defecate?”
“They redirect the bowel so that it comes out on the abdomen,” I said, as casually as I could. It didn’t work.
“On the belly?” he yelled. Jane gasped, then grew more silent than before.
“Yes,” said Jay. “Mom’s cousin Caroline had the operation a few years ago, as elective surgery, and says for the first time in her life she’s free of pain.” I was at last glad to be imparting this information. To me it represented future health, disappearance of pain, and I hoped that I could make them understand that there might be a cure and that I was willing to take the chance.
After a few more of the logistics were discussed, the subject of the dreaded bag arose.
“I’ve read about this. You’ll have to wear a bag!” Jane was back. “Is that the good news?”
“Well, in a way,” I said. “I won’t always have to scout out the public bathrooms, and for once I might not always be cramping and uncomfortable.”
“Were you always that way?” asked Jane. “Why didn’t you ever tell us?”
“Well, I guess I wanted to keep it secret. I wasn’t too thrilled to feel so damaged, you know.”
“What kind of bag, Mom?” asked Aaron.
“I haven’t even seen it yet... a plastic bag, to... um... catch the (this was suddenly very difficult)... like a Baggie, I should think.”
Now no one, from either coast, uttered a word.
Finally from Jane: “How does it stay on your body?”
“I have to confess that I don’t even know. I guess I’ve been avoiding that part of it.”
“Mom?” Aaron sounded very solemn.
“Will it be a Vuitton bag?”
My son, the comedy writer. A great line of dialogue through the darkening clouds. We all laughed for a long time.
“Of course,” I said. “Only the best for me.”
It is with this same sense of humor that Barrie approached her third and final surgery. The first two had left her with a four-inch, inflamed opening through which her herniated intestine flopped. Sore, aching, and tired from radiation and chemotherapy treatments, she had remained active in her role in Anna Meara’s After-Play. The play closed on March 5, 1995. Her surgery was done on March 7.
"There were steel staples on the left, where he (the surgeon) had unwound my bowel like a garden hose and sewn up the herniated muscles and skin. He had pulled the intestine under the skin to the other side of my navel. There he’d made a tiny opening, about as big as a dime, so that it looked as if I had two belly buttons, both “innies.” It was a revelation, a miracle, not to have that huge, repulsive appendage protruding from my body.
"There were three incisions now: the old stoma and hernia repair, the original middle incision from the first operations, and the new stoma opening. It was somewhat sore and not a lot of fun. Only this time I didn’t have to have my rectum removed. It was already done. So I was one step ahead, if one could look at it that way," said Barrie.
Barbara Barrie is thoroughly enjoying working with “the kids” on Suddenly Susan. But when the curtain goes down on the role of the feisty Nana, the lights won’t go down for this active senior.
“I have a platform now,” she says, referring to her work through the American Digestive Health Foundation. “I’ve learned that people like me, who are in the spotlight, can actually do some good by saying, ‘Get early screening and pay attention to the symptoms. You can avoid this disease.’ You know, I have a great gig with Suddenly Susan, but I need to get this message out. To me, it’s a lot more important than acting.”
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This article was published in Coping® with Cancer magazine, May/June 1998.