Originally created 06/18/04

Finding their voice

Elmer Bowen sat at a long table in St. Joseph Hospital's Sister Mary Louise Conference Room on Sunday afternoon with frustration on his mind.

"We were in this card store, and Doris got to coughing. It sounded terrible, but this woman was staring at her," he said. "The way she looked at my wife, it was like she didn't belong here. So I watched this woman watch my wife for as long as I could stand before I had to tell her what was wrong with her."

There was nothing wrong with Mrs. Bowen. She just doesn't have a larynx, otherwise known as the voice box.

The Chatterbox Club, which meets monthly to support those who have undergone a laryngectomy, gives a voice to people who literally have lost their own.

Members discuss the challenges they face - people such as Mrs. Bowen, who suffers from one side effect from her 1991 surgery: an unusually harsh cough.

It's a small group. President Carlton Bonham estimates the number of active members at a dozen, and club members have met regularly since 1990.

Mr. Bonham joined after his 1996 laryngectomy. Like the vast majority of laryngectomees, he contracted throat cancer from smoking. The American Cancer Society estimates that 38,000 new cases of neck and head cancer were diagnosed in 2002, and 9,000 of those were in the larynx, where the vocal cords and Adam's apple reside.

"If we can get one kid to stop smoking or one more patient to feel better before and after they get it done, it's all worth it," Mr. Bonham said.

Larynx cancer is rare, and if caught early, it can be treated without removing the entire larynx. The stereotype, a person holding an electric larynx up to his throat and forming monotone, electronically tinged words, is not all there is to the story.

Jan Perrow, the lead speech pathologist at St. Joseph Hospital, has been teaching laryngectomees how to breath in such a way that they can inject air into the esophagus and expel it in a controlled way known as esophageal speech.

Many patients also have Blom-Singer Voice Prostheses that temporarily block air from escaping from the hole in the throat, forcing it up the esophagus, where vibrations are produced, and out the mouth.

"When you have that surgery, everything is the same; you've just lost your ability to make sounds. You just have to learn how to vocalize in a new way," Mrs. Perrow said.

Of all the letters in the alphabet, Mrs. Perrow said, "h" is the hardest, because a speaker must bring air up in the throat when he speaks words such as "hello."

"If they want to say 'how,' that might not work, but if they say 'How are you doing?' then people can get the idea of what they're trying to say," she said.

When a person has a total laryngectomy, air cannot reach the lungs through the mouth, so the surgeon makes an artificial opening in the front of the neck, and the upper part of the trachea is secured to it. The connection between the throat and the esophagus, which leads to the stomach, is unaffected, so eating and drinking are not a problem.

The loss of the voice is just one issue patients face. For starters, with no effective way to close the opening to the lungs, a laryngectomee's swimming days are over. With little air flowing into the nose, the sense of smell also takes a hit, and because smell is intricately tied to taste, that also suffers.

"One of the things you run into is if you eat really hot food or drinks, you can't spit it back up, so you learn really fast not to do that," Mr. Bonham said.

Rita Cheeks, who was at the meeting with her husband, Hubert, had a laryngectomy in July 1997 and still rarely speaks in public.

"It's hard to wash your hair, and you can't even blow your nose. It's a terrible thing," she said.

In a raspy voice that resembled laryngitis, Mrs. Bowen said, "It's such a big part of your personality; it's so tough when you wake up and you move your mouth and nothing comes out."

The Chatterbox Club isn't only about what people can't do. Meetings have featured guest speakers discussing living wills and nutrition, and mini concerts by groups such as The Boogie Sisters. Members hail from as far away as Jefferson County, Ga., and McCormick County, S.C., and feature laryngectomees' friends and family members. Asked how the mostly 60-plus-year-old members' grandchildren reacted to their transformation, they were upbeat.

"I gathered all of my grandchildren together beforehand and told them I had cancer, and I told them I would have a hole in my throat, and they were OK," said Allen Fouch, who had his surgery Oct. 15.

"We had a 3-year-old, and we thought he'd be afraid, but he was fine," his wife, June, chimed in.

Even episodes of public ignorance can make for a good laugh.

"Doris was in a store, and she was still using an electric larynx, and this one little boy was just so interested in her. He kept asking her to say different things, and he wanted to know how she sounded like that," Mr. Bowen said.

"Finally I told him I was Elmer's robot, and he went running over to his mother and asked her if he could get one," Mrs. Bowen said, as chuckles rose from around the room.

Reach Patrick Verel at (706) 823-3332 or patrick.verel@augustachronicle.com.


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