Internet Laryngectomee Support
Is Nicotine Addictive? Just Ask
by Ron Langseth
“Wait a minute, I know you!” “Say, aren’t you . . . ?”
Phrases familiar to Tom Cruise and Nicole Kidman are becoming familiar to Debi Austin, California Association of Laryngectomee’s historian and member of the CAL 2000 Planning Committee.
In 1996, when Debi placed a cigarette to her stoma for the TV camera and all the world to see, she became a public figure.
Since then, her role in the advocacy of tobacco awareness concerning public health, particularly that of our children, has grown considerably.
In the fall of 1992 Deborah Austin was working as a Communications Consultant in West Los Angeles.
One morning, just before Halloween, she noticed a lump below her ear. It wasn’t the mumps as she had first suspected, and after a week of taking antibiotics she visited an ENT who determined that it was, indeed, cancer.
Debi didn't seem to hear much of what the doctor said after the word “cancer,” but she was listening when he gave her the name of a laryngectomee who took her to a meeting of the New Voice Club of the Valleys in November.
“I was in a state of shock when I went in,” she said, “but after the meeting, I knew I would be just fine.”
She had a total laryngectomy on December 4, 1992.
Debi was smoking three packs a day when she was diagnosed.
“And I smoked probably five or six cigarettes a day after surgery,” she admitted.
“I just didn’t talk to many people about it. I’d been smoking since 1963,” she added.
“I didn’t know how not to smoke.”
A year or so later Debi noticed that she was having trouble
breathing - starting with air conditioning and paper dust at work, and traffic fumes driving to and from work.
Doctors told her it was allergies, then asthma, and “reactive airway disease.”
Finally, in 1995, she was diagnosed with emphysema.
Despite her diagnosis of emphysema, she continued to smoke, unbeknownst to most.
In 1995 a group of filmmakers came to a meeting to shoot material for a tobacco awareness program.
Debi spoke to them, but wouldn’t admit that she still smoked. Some months later, she received a call from a friend in the club who knew her secret.
Sherry Robertson, the friend, had heard that the State wanted to do an anti-smoking ad with a laryngectomee who still smoked, and who could speak without an instrument.
Not sure if she wanted to reveal her secret to the State of California, it took her a week to call them back.
After several interviews, the decision was made, and the first of several public service announcements (PSA) was filmed.
Up to that point, Debi’s PSA was the most “in your face” campaign that had been filmed, and it took some months before it was finally aired in April 1996.
The spot became an instant success, and in 1998 the Center for Disease Control (CDC) bought it for their library.
At one time, it was running in five states.
Shortly after the spot began airing, Debi’s sister and her daughter, Joy, came to live with her.
Joy was four years old-she had been born 48 days after her aunt’s laryngectomy.
In niece Joy, Debi found the wherewithal to finally quit smoking. Laryngectomy couldn’t do it.
Emphysema couldn’t do it. It took the love of a small child. Says Aunt Debi,
“She was my backbone and my strength to finally quit smoking.”
Due to the impact of the PSA, Debi began speaking to groups and schools, and was interviewed for documentaries in Canada, England, and South Korea.
She was a speaker at the American Lung Association Awards Luncheon in Alameda County.
In October 2000 Debi filmed two new spots in which she tells the audience how she finally conquered her addiction with the help of a four-year-old.
They are now airing in California, and may air soon in other states. There is talk of a national magazine interview, but a date hasn’t been set.
When the spots were shown in Washington State, Debi was invited to that state to take part in tobacco education efforts there.
Due to her emphysema, Debi can’t fly, so she drove to Washington, where she spoke in support of SOUL (Saving Ourselves from Unfiltered Lies), a youth anti-tobacco group.
“These young people put on such an amazing positive program,” says Debi, “that the Governor, the State’s Attorney General, and its Secretary of Health were all there.
It was wonderful."
“Next month, on April 9, the California youth anti-tobacco movement will be addressing this same issue on the Capitol lawn in Sacramento.
I hope that everyone who can will take part in their support.”
The picture from the first PSA has appeared in Time, on billboards and posters, some health magazines, on the Channel 7 (L.A.) Evening News, and several broadcast and cable TV health programs.
While in Washington, Debi was startled to see a bus go by with her picture on it.
“There are more PSAs every day featuring laryngectomees on TV and radio,” says Debi.
“This is wonderful. I know that Massachusetts and Arizona have done their own state programs featuring laryngectomees.
And the American Legacy Foundation is featuring a laryngectomee."
“I have been very fortunate to be a part of this movement,” said Debi.
“I have borrowed a line from (CAL President) Wayne Baker, that I open most of my talks with; ‘This voice is brought to you by R.J. Reynolds’."
“I think the youth of our country are tired of being the ‘sacrificial lambs’ for Big Tobacco and they are fighting back.
A great lady once said; ‘If you are not a good influence, perhaps you are a horrible example.’
It is awesome to think that you can help people and make a difference.”
(This article is reprinted from the April 2001 Cal Voice which Ron edits.
Both Ron and Debi are members of WebWhispers and are frequent contributors to our e-mail list.
Both live in Southern California). Ron can be reached at:
email@example.com and Debi can be reached at:
Lary Rehab Survey
Attendees at the 1999 convention in Reno were surveyed for a research project carried out by Leah Skladany and Tina Inman (under the direction of Dr. Thomas Watterson) of the University of Nevada at Reno School of Medicine.
The purpose was to update information on the rehabilitation of laryngectomees.
Annual Meeting and Voice Institute attendees were surveyed, and 94 questionnaires were
completed and returned.
A brief word of caution about this or any other survey.
While it is tempting to do so, one should not generalize from surveying one group of people, in one location, during one time period, who have chosen to be there, and who were willing to complete the survey.
They may or may not be representative of the laryngectomee population as a whole.
Nevertheless, the results of this survey are interesting and provide us with information which may be helpful as we work to assist in the rehabilitation of fellow laryngectomees.
Survey results showed that the average age of attendees was 64, with a male to female ratio of close to 4 to 1.
This result generally mirrors national data on the age and gender of laryngectomees.
Nearly half were within five years of becoming larys, another third were between six to ten years past their operations, and the numbers dwindled to 4% who had been laryngectomees over 21 years.
One of the most troublesome results from the research is that 28% reported that they had not received what they considered to be effective pre-operative counseling from any source.
Of those who did receive counseling, only 14% received it from a recovered laryngectomee, 22% received some from nurses, 42% from SLPs (speech/language pathologists), and 86% from physicians.
Also disturbing is that fewer than one half (46%) received a review of communication options/possibilities prior to their surgery.
Of the primary means of post-operative speech, 44% were TEP speakers (with twice as many having "secondary" punctures after the laryngectomy than "primary" ones which are done at the same time), 32% were using ALs, and 22% were esophageal speakers.
Three quarters of the respondents use a secondary or back-up form of speech, with the electrolarynx serving that function for 76%, while 22% used standard esophageal speech as back-up.
More than nine out of ten (94%) used an AL right after surgery, with 61% eventually going to another speech option.
Of those surveyed, 83% expressed a preference for the Servox AL, 7% for the Cooper-Rand, and the remainder spread among other brands.
One troubling statistic which involves the AL is that fully one quarter of recipients never received any training in how to use them.
Slightly over half (56%) never received inpatient training, and nearly one in five (19%) never received outpatient training.
Those surveyed indicated that 60% of them had failed at least one speech option, with 80% of these indicating that they failed to achieve esophageal speech.
In the summary of the findings, the researchers concluded that:
(1) "Frequency of pre-operative counseling has not appreciably changed in the last 20 years. Patients remain uninformed."
This conclusion was reached by comparing the Reno research results with those reported in 1978.
(2) "AL use in the immediate post-operative period has increased."
(3) "Esophageal speech has declined as a primary communication choice."
(4) "TEP is the most common communication option, followed by the AL."
(5) "AL training appears inadequate."
A great many conclusions can be drawn from this survey data since, contrary to the common expression, facts rarely "speak for themselves".
But certainly one conclusion which can be drawn from this data is that too many people facing the laryngectomy operation are doing so without having met with a recovered laryngectomee, and without having all speech options explained, much less demonstrated.
Many local laryngectomee support groups attempt to address this problem by communicating with those who come in contact with individuals facing the loss of their larynges.
They make sure that local ENTs and SLPs know they exist, and what services they provide.
One of the most important they can provide is to demonstrate post-laryngectomy speech possibilities.
Many clubs also train hospital visitors so that these individuals will be seen by the medical
team medical personnel as essential in providing counseling to laryngectomees.
In a previous discussion on the list about a hypothetical "Laryngectomee Bill of Rights" several members suggested that every individual facing a laryngectomy should be given the opportunity to visit with a fully recovered laryngectomee (or more than one) prior to surgery.
The recovered laryngectomee provides hope to the individual that they can survive cancer and that life is possible after losing the voice by their mere presence, and, ideally, the person should also be able to demonstrate all alaryngeal speech options.
Patients should also have the right to have available and to request that a recovered laryngectomee visit them while in the hospital, and be available afterwards.
Certainly laryngectomees ought to have the right to receive at least basic training in the use of ALs.
Whether this is provided by hospital personnel, an outside SLP, or trained recovered laryngectomee is less important than that it be provided.
We have seen too many laryngectomees give up on the AL, or use them poorly. Many new laryngectomees quickly give up on using various alaryngeal speech options because of the lack of good instruction and feedback, and because of their failure to understand that speaking well usually does not come instantly but requires focused and productive practice.
A continued source of good basic information on AL use can be found in the December 1999 WWJ in the article, "Improving your AL
WW December 99 Newsletter .
(Editor's Commentary: There remains a clear role for the recovered laryngectomee in the rehabilitation of prospective and new laryngectomees.
If our role is only to provide living proof that people can survive this cancer, not only
survive but thrive, and go on to recover almost all that we have lost, then this alone justifies our involvement.
Our most precious gift to one another is understanding and hope. But we also know that we are a small population of cancer patients generally, and are found in all communities large and small.
Many of us have discovered that the knowledge and experience level of our local healthcare providers is often limited or outdated.
We also know that even where excellent heathcare professionals can be found that not all of us have equal access to these services.
In my case, my insurance did not cover the services of an SLP, but I was able to obtain this through a vocational rehabilitation program.
Many might not know about such a program or how to apply for it. So all of this suggests the need for a continued role for healed laryngectomees in assisting the rehabilitation of
each other until such time that every medical provider is able to provide excellent service, every laryngectomee has access to it, or until this form of cancer is relegated to the medical history books.
These facts also place a burden on us laryngectomees to become as knowledgeable as possible so that the medical professionals welcome us into
participating as members of the treatment team who have earned our role in the rehabilitation of laryngectomees.)
Come to the Beach!
The schedule continues to be firmed up for the golden 50th anniversary Annual Meeting of the International Association of Laryngectomees to be held in Myrtle Beach, South Carolina, August 16th through the 18th.
The Voice Institute runs from the 14th through the 18th (with laryngectomee VIPs attending from the 16th).
The detailed schedule can be found at this web page: http://www.larynxlink.com/MyrtleBeach/Myrtle3.htm
Annual Meeting: Its schedule is on the same page as above
but is being constantly revised, so you may want to revisit it periodically as details are completed.
New State Association?
New Jersey may be the next state laryngectomee association if representatives from the Somerset County Miracle Voice Club, Ocean County Nu-Voice Club, Garden State Nu-Voice Club, and the Tri-County New Voice Club have their way.
They met with representatives of the ACS on March 1, 2001 to discuss plans for a statewide association of laryngectomees for New Jersey.
The meeting was held at the ACS offices in Rarita, N.J.
A second meeting was held in April and plans were made to hold organizational meetings at each club on a rotating monthly basis.
One of the organizers for the planned state association is WW member Roy Boyd, President of the Tri-County New Voice Club.
Others involved in forming the state association are Dr. Mark Geller (who is acting as advisor), Carolyn Anderson, Michele Capassela, Mimi Gelbing, Grace Ulbricht, Michael Lobosco and Jim Batissa, who was president of the “old” state organization.
can be reached at: firstname.lastname@example.org
European Lary Care Uneven
117 European hospitals which were identified as leading institutions in the treatment of cancer of the larynx and voice restoration were surveyed as part of a project to assess the quality of laryngectomee care in Europe.
The results of the survey were reported in late April to Reuters by Dr. Hans Mahieu of Amsterdam University Hospital, Holland.
He reported to conference attendees that the treatment of European laryngectomees differs significantly from northern to southern Europe.
Patients in northern Europe were much more likely to receive radiation and voice conservation procedures, whereas surgery was more likely to be the treatment option used in southern Europe.
Northern European laryngectomees were also more likely to receive reconstructive and speech restoration surgeries.
Dr. Mahieu also stated, "A further surprise in the results, and something that was really quite shocking, was that there are still many institutions performing total laryngectomy with no attempt at surgical voice restoration and no use of a voice prosthesis.
We thought that everyone had agreed long ago that these techniques should be offered to all patients."
Efforts are underway to provide a more even access to quality care throughout Europe.
WW member Judy Ramboldt won the big one! Judy took the $1000 first prize in the Siemen's sponsored essay contest on the Servox.
She e-mailed us, "I WON!!!!!! I WON!!!!!! I WON !!!!!!!! I am so excited.
It couldn't have happened at a better time. Be happy for me."
We are happy for you, Judy! Here is her winning essay:
"I met my new voice nine days after surgery when I returned home from the hospital.
I started to relearn audible communication three weeks later.
My Servox is dynamite. It has had to sustain rolling off the couch, and being dropped more times than I want to count.
It even went on a trip around the house, bouncing on the tile floors behind my cat Nicholas.
He had grabbed the cord and took off. It still worked. The instrument has needed very little repair in the last 5-1/2 years.
The Servox has many great features. Its clarity has no equal, its durability is unbelievable, and its range of volume allows me to talk to large groups without a microphone.
With my voice, my Servox, I can still perform my theatre work (costumer), my laryngectomy club participation, and, of course, my everyday life.
(P.S. Every Servox has a different sound. Recently I had to use a loaner while my unit was in for repair.
It did not sound like me. When I got my Servox back, my husband, Bill, said "That's my lil bit's voice!)
Judy can be reached at: Jwramboldt@aol.com
WebWhispers member Libby Fitzgerald momentarily forgets that her Servox is not a microphone and bursts into song (sort of...).
by Judy Greiwe
Welcome New Members
We welcome the 26 new members who joined us in April:
Oklahoma City, OK
Island Park, NY
|Dick & Shirley Collison
|Kit Edrington - Therapist
La Habra, CA
Powder Springs, GA
|Matt Griffin - Griffin Labs
Runcorn, Cheshire, UK
|Caryn Melvin - SLP
Ft. Lauderdale, FL
Huntingdon Valley, PA
|Jim Shanks - SLP
|Mary Glyn Spivey
|Rick & Jennifer Turrubiate
As a charitable organization, as described in IRS § 501(c)(3), the
WebWhispers Nu-Voice Club
is eligible to receive tax-deductible contributions
in accordance with IRS