Don't Die of Embarrassment: Life After Colostomy and Other Adventures

Don't Die of Embarrassment: Life After Colostomy and Other Adventures

by Barbara Barrie

A remarkably candid and informative first-person account of surviving colon cancer and living after a colostomy. A helpful guide for anyone facing this life-altering surgery.
Every year 70,000 people in the United States and Canada undergo colostomies. In 1994, Barbara Barrie became one of them. When the successful actress received the diagnosis of

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A remarkably candid and informative first-person account of surviving colon cancer and living after a colostomy. A helpful guide for anyone facing this life-altering surgery.
Every year 70,000 people in the United States and Canada undergo colostomies. In 1994, Barbara Barrie became one of them. When the successful actress received the diagnosis of colorectal cancer, she knew that this was the greatest crisis she and her family would face. But it also became an adventure that, through courage and humor, brought new joys and a greater appreciation to her life.
More than just a memoir, Don't Die of Embarrassment provides valuable information about the ostomy experience. She gives essential information about the occurrence of colon cancer, its symptoms, and treatment options. A valuable guide for people learning to adjust to an altered lifestyle after surgery.
Includes a new afterword, written by Dr. Otis W. Brawley.

Editorial Reviews

From the Publisher
Betty Rollin A vivid, touching, often funny story about one of life's most indelicate medical nightmares.

Liz Smith A brilliantly told tale of recovery, hope, faith, and love. What happened to Barrie happens to a lot of people; she has done a great service by speaking out, conveying her experience so movingly and in such a straightforward manner.

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Chapter 23

The Lady on the Bus

June 30, 1994

There were bananas, lettuce, asparagus, and artichokes in my shopping bag as I walked home from the market, my first "wifely chores" since the five-day double dose of chemotherapy and radiation. I bought tissue paper at the local economy store — what a joy, to be doing a real thing in the real world, away from hospitals and doctors. I counted out the change, then grabbed two rolls of Life Savers.

"That'll be sixty-five cents more," said the cashier.

"Gladly," I said, thrilled to be standing there, the sun struggling through the spotted windows, bits of trash over the floor. It was all simply wonderful.

I ordered a case of wine from Mike, our local wine merchant, who said, "Welcome! Where have you been? Off doing a movie or something?"

"No, I was just vacationing." (Ha!)

He proceeded to tell me a long story about his wife's recent entry into medical school. A very long story. I relished every moment of it. Asking him many questions, I finally realized forty-five minutes had passed. Ordinarily I would have long ago rushed away to the next unimportant, benign activity, but today I was fascinated by the conversation and delighted by the bins of wine with their large white price signs: "Best of the newest California Pinot Noir." Yes, yes, I would take two cases, and I would adore any narrative, any bit of news, even the local panhandler who dizzily held out his hand as I left the store.

I was an alive person on 72nd Street, Zip Code 10023.

The sun warmed my back, so I opened my jacket. The breeze lifted my hair as I walked with slightly tentative, sneakered steps. Overhead the clouds moved in summertime, scuddery shapes from the Hudson River toward Fire Island.

Oh joy, oh wonder, oh mystical Fire Island, my heart's residence, my solace, my peaceful place.

I once asked my therapist friend Jeffrey Kramer, "Why am I so in love with Saltaire? It's just like Corpus Christi — on the water, sailboats, cottages, the white beach. Our little house is exactly like the one I grew up in. And my life at home was so hideous, you know that. What makes being at the beach so emotional for me?"

"Because this time you're going to make it right," he replied.

We'd soon be going to Saltaire for weekends. I'd have to do the seven or more weeks of radiation from Monday to Friday. Yet there was still a kind of stretching, pulling pain, and the lumpy shape of the new opening could clearly be seen beneath any fitted garment. Wasn't it supposed to conform to my body? I thought by now the edema was supposed to subside.

In our elevator I moved quickly into the corner, put down the shopping bags. Too many people crowded in after me, and I extended my arms as if to ward off an enemy. I didn't want anyone too close, I was afraid of being bumped, the colostomy being hit. The afternoon had been so freeing and happy, and suddenly, in a moment, I was a little old lady, the kind who used to make me impatient and resentful. Now I was one of them!

"Jay, I'm turning into a Crone. I'm a little old lady." I cried, as he came home from rehearsal. "I'm scared of human contact."

"Well, right now you are. Of course. Stay calm, Barbara, why do you expect so much of yourself?" He put down his shoulder bag. "Come on, I'm taking you out for dinner."

The first time in an enclosed, public place? What if everyone could see that I was carrying around this new, projecting, raw attachment? What if the pouch broke, and the entire restaurant would view this overflowing, smelly, bent-over woman rushing to the ladies' room with her supplies in hand?

"So if you have an accident, you have an accident," Jay said. "Big deal. How many other people in concert halls and theaters and restaurants probably have had the same operation? Darling, I hate to say this, but you are not that important, and you are not alone in this thing."

That's telling the little old lady.

We went to a Spanish restaurant in Greenwich Village where we had had one of our first dates in 1964. It was still the same: candles and pitchers of sangria, baskets of addicting bread, and checked tablecloths. Tonight we had paella and red wine and salad. It was almost romantic, except that I was slightly tense, and the pouch seemed to be puffing out. The pressure was uncomfortable, so I shifted often on the cushioned booth.

As Jay was paying the check, I went into the ladies' room to see what was happening. Yes, it was just air, but the pouch was hugely blown up and unbearably tight. I took off one of my earrings and with the post made a tiny hole. The pouch sighed with relief and relaxed a little. Wasn't I smart to think of that? I was proud of my inventiveness.

Back on Seventh Avenue Jay said, "Shall we go into the chess place and have a game, the way we used to?"

We gazed into the chess parlor where, twenty-five years ago, we had spent a few evenings laughing and courting and drinking tepid coffee. I could never beat Jay, even though I was a fair player. And I couldn't have cared less. I had just been waiting until we could go back to my sublet apartment, take a long, warm bath together, and make love.

"No, forgive me, honey, I think I've had enough. Would you mind taking me home?"

"Shall we get a cab?"

"No, no, a bus is fine. I need to get used to people." We boarded a Number 7 bus. Jay put his arm around me, as if to protect me from a falling passenger or a jolt or a sudden stop.

As we progressed uptown, I began to enjoy the ride, but the pouch seemed to be doing a little rumba under my clothes, and then a huge, solid expulsion entered it from my body. Oh, dear. Why couldn't it wait until we got home? Well, it'd be okay, wouldn't it? I mean the pouch would take care of it. No one would know.

Gradually a really vile smell came up from my belly. I mean, a violently awful, terrible, embarrassing, traumatic, ghastly smell. I actually wanted to die, to melt into the atmosphere, to disappear. No one told me that I would ever experience such humiliation. I was subhuman, a leper, something to be thrown out.

I drew my coat around me tightly. Why was this happening? The odor became worse, and the woman next to me began to sniff and look under her feet. Oh, my God. She thought a dog had been there, or there must be garbage on the floor.

I flattened my arms across the coat. The woman became more frantic in her search. She rose and looked at her seat, then sat back down again. I was paralyzed. I couldn't move. If I moved, she'd know it was my fault. Staring straight ahead, I tried to pretend that absolutely nothing was happening. Jay was sleeping against my shoulder. He has slept through a California earthquake and a two-and-a-half-hour broadcast of the Metropolitan Opera, so I wasn't surprised that he was oblivious of this unspeakable crisis.

The woman began to whimper as if she were caught in the throes of a demonic, whirling draft, but she didn't move either. It was as if we were bound together by a nightmare neither of us was willing to acknowledge or believe.

She took out a tissue and looked at the bottom of her shoes. Had she stepped in something? She looked up at the air vents and tried to open a window. A man tried to help her, but it was bolted shut. She sat down again, rigid, bewildered.

And now she was getting angry.

Finally she turned and looked straight at me, her eyes wide, full of furious realization. She wanted to kill me. And I didn't blame her I stared back in horror I wanted to say, "No, you are not crazy and it is me and I've just had cancer and a colostomy and I don't know how to handle it and please accept my apology." But my lips were zippered, my neck stiff. I desperately wanted to face the moment, to be honest, to take her out of her misery, but I couldn't do it.

A minute later we reached 72nd Street, and I rushed to the door, leaving her with her hand across her mouth and nose, her face perspiring. Poor soul. I had nearly done her in.

It was of course the hole I had punched in the pouch. You're not supposed to do that: It lets the smell out. And I was so stupid, such a novice, that only now did I understand the consequences of what I'd done. A hole in the pouch is a no-no. An absolute, irrevocable, unrelenting no-no.

I told Jay what had happened as we walked home. He could smell me now.

"Wow!" He started to laugh. "You are a little fragrant."

"Oh, sorry, I'm so sorry." I moved toward the curb. "But Jay, this is tragic...that poor woman," I said.

"Oh, she's just fine. It should be the worst thing that ever happens to her. Lighten up, for chrissakes, Barbara." He was still laughing.

"Do you think she'll go home and have chocolate cake and milk, now or ever again?" I asked.

"Yes, and in twenty minutes she'll forget all about it. She'll dine out on that story for months."

I wondered if I could ever tell the same story, if I'd have the courage or the humor to do it. Truthfully, it had been funny, horrific, and bizarre. And that's the moment when I decided, in a flash, to write this book.

Copyright © 1997 by Barbara Barrie

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