Internet Laryngectomee Support
Term TEP Use Studied
TEP speech has been a popular alaryngeal speech option for laryngectomees since Blom and Singer introduced a practical way to obtain it via the tracheoesophageal puncture and prosthesis in 1980. Indeed, it has been the most frequently recommended choice for speech rehabilitation of total laryngectomees by medical professionals. A number of studies have reviewed the initial success rates with TEP speech, but not as many long term studies have been conducted.
However, a new study at the University of Illinois Hospital and Clinics and Westside Veterans Administration Hospitals followed continuing use of TEP speech over a ten year period. Short term success was 70%, and long term success fell off just 4% to 66%. The authors of the study considered this to be a very high initial rate and continuing rate, particularly since a substantial proportion of their patients are lower socio-economic and with higher rates of alcoholism than the general public.
A number of factors contribute to the abandonment of the TEP method of alaryngeal speech. Some patients are unable or unwilling to deal with the maintenance or expense required for using the TEP. Cancer recurrence leads to abandonment, as do problems with tissue health. Success rates are lower in those who had part of their esophagus removed and the lower part of the esophagus pulled up; or where tissue has been used from another part of the body, such a the forearm, to create a new esophagus. Problems with tissue health can lead to chronic leaking around the prosthesis, which creates a danger of pneumonia.
The research authors conclude that the long term use rates are supportive of TEPís popularity.
Nystatin Shown Effective
Yeast (candida) is the primary cause for the failure of TEP voice prostheses and the need to replace them. An article appearing in the April issue of The Laryngoscope reported on a study conducted in Belgium on the effectiveness of candida medications.
Four different types of candida were discovered forming on prostheses. Nystatin, which is commonly used by TEP speakers to control yeast, was effective against all four types. Other medications compared to Nystatin were miconazole and fluconazole. Nystatin is a prescription medication which is commonly used for "thrush"-- a yeast infection occurring in the mouth.
Three European Studies Recommend Eating Fewer Fried And Baked Foods
A study conducted in Norway reinforced similar studies done in Sweden and England which found that potato chips, french fries, biscuits and bread contained high amounts of acrylamide, an agent formed in high carbohydrate foods are baked or fried. Acrylamide is a cancer-causing chemical. The study showed that bread contained the lowest levels of acrylamide in the survey of 30 types of food, but is a major source of the chemical in the diet of most people because they eat more bread than the other food types. However, the research team said that the benefits of eating bread in reasonable amounts outweigh the risks. Good news for bread lovers!
Stages or Phases of Grief?
In 1969 Swiss-born psychiatrist Dr. Elizabeth Kubler-Ross wrote a best selling book based on her experiences in dealing with the terminally ill, On Death and Dying. In it she described a five step process or pattern she believed was common to those who were facing death. The ideas were later expanded to include other kinds of traumas and losses.
Since then a number of the basic premises of the book and model have been repudiated by the professional psychiatric community. They questioned whether the process is universal, whether there are more or fewer phases, whether it is all very individual, whether some people get "stuck" in one phase or another, etc. But some of her ideas continue to make sense to those who see in the pattern she described a mirror of their own experience as they faced cancer of the larynx.
Getting the cancer diagnosis is a shock. Despite the fact that more people now survive cancer than do not (particularly larynx cancer) many still equate the word "cancer" with death, at least in the beginning. And many members of the human family do not deal very well with facing our own mortality.
Becoming a laryngectomee also involves a number of losses. Some of these losses include:
(1) Loss of wellness. The laryngectomy operation is major surgery even when the cancer has not spread. There is some pain and the healing process is measured in months and even years rather than days and weeks. In addition to the loss of voice, we lose the sense of smell, taste and sensation in our necks (at least temporarily). Additionally, we lose the sense of confidence in our health because we are told that we must wait years before it is certain that we are cancer-free from the initial cancer, and may learn we are more prone to developing new sites for cancer.
(2) Economic/vocational loss. We may fear losing our jobs or being forced into early retirement or on to welfare. The cost of treatment for the uninsured or underinsured can also be a financial catastrophe.
(3) Loss of identity. Losing a job or being forced into early retirement can contribute to a sense of loss of personal worth and identity. Also, for some, their particular voice was among the things which they thought made them who they were.
(4) Loss of self-confidence and status. We may feel that we are now disfigured and wonder if we will be accepted by others. We may wonder if anyone will find us attractive again, and how others will accept our appearance or anything else about us which is different and conspicuous. We might wonder if others will think of us as "handicapped" or as a "freak." Perhaps some of us think of ourselves in this way. We might wonder if family and friends will feel and act differently around us, or even reject us.
(5) Loss of communication. We lost the ability to communicate initially, and then often have subsequent problems being understood. Many of us can no longer "compete" on an equal footing in verbal exchanges since we are more easily drowned out. In loud environments we may find ourselves forced into silence. And some of us communicate less because it has become more difficult. We may lose confidence in our ability to communicate with others, particularly people we encounter for the first time. We also lose the ability to fully communicate emotionally through laughing or crying the way we used to.
(6) Changes in abilities to do the things we used to do - such as singing, water activities, blowing your nose, dressing as we wish, taking a shower without concern, etc.
Many have described the process we go through as a kind of healing journey, and most of us know how important it is to have the support of others as we travel it, particularly from those who have been here before us.
Elisabeth Kubler-Ross' first identified stage is "shock and denial". This stage can be particularly dangerous if it causes the newly diagnosed individual to delay or reject treatment. They might think to themselves, "This is not happening. I will wake up and things will be like they were." "If I ignore this it will go away." But for most of us, this phase or stage is fairly short lived.
A second stage is "anger." "Why is this happening to me? It isn't fair!" We may also have some angry feelings towards our health care providers for not catching the cancer sooner. This theme of second guessing yourself and others and wanting to turn back the clock is a common theme which may take a number of forms during the grieving process.
According to Kubler-Ross, a third stage is "bargaining." "God, if you will only let this radiation work and save my voice...." This also has a strong element of wishing to turn back the clock.
A fourth stage is "depression." This may be sufficiently severe to require professional assistance through psychoactive medications, counseling, or both. Since many laryngectomees become hypothyroid and depression is one of the symptoms, this also needs to be monitored. Research has shown that family physicians are not good at diagnosing depression in their patients, particularly in the elderly population. So symptoms need to be brought to the attention of the family physician or other doctor.
The final stage and the desirable goal of the process, according to Kubler-Ross, is "acceptance." This is the "moving on with life" stage where you are able to spend more time thinking about the present and future than the past. You accept your status as a laryngectomee and may come to view each day you have to enjoy as a "bonus." The part of you which is a laryngectomee seems but a small portion of who you are as a whole person. And, although you have some things to contend with as a laryngectomee, you tend to view them as fairly trivial.
How each of us handles our diagnosis and all aspects of our healing journey varies with the individual. Some are lucky enough to quickly pass through the stages and reach acceptance. But others may take longer and may linger in one of the phases for longer than is healthy. Luckily, there are very effective treatments for dealing with these problems. See your medical professional if you need some additional help with this part of total laryngectomee rehabilitation.
(Note 1: the diagnosis and treatment of depression is the focus of the "IAL Notebook" section of the May, 2002 "IAL News." You can read it at this address: http://www.larynxlink.com/Main/newslett.htm)
(Note 2: For more information about dealing with the psychological aspects of being a laryngectomee see: National Mental Health Association at http://www.nmha.org, and the ACS site page on anxiety and depression at: http://www.cancer.org/eprise/main/docroot/MBC/MBC_4x_Anxiety?sitearea=MBC).
Larys and Their Pets
The Cat That Didn't Know I Lost My Voice.
by Pat Sanders
The little skinny deaf cat that I adopted had never had a chance to eat her fill. I got her from a household of rescued strays and unadoptables where there were 19 cats living in a two bedroom apartment. When she slept, she couldn't hear them call that it was time to eat so sometimes there wouldn't be much left. She was cowed down because there were so many cats and her ears were "broke" so she couldn't hear them come up behind her. The day I went to get her was the luckiest day of her life and I was rewarded with a wonderful companion, my Angel. I already had two cats but had lost the white deaf cat that I had loved dearly, so the classified ad for this one had to be directed to me.
By the time I had my laryngectomy, Angel was five years old and no longer skinny...not even slim, but a big, plump cat, very satisfied with self and home. She had learned to answer, or maybe she trained me to use, hand signals after I got her attention. She always comes when called this way unless she thinks I have a pill bottle in hand.
When I came home from the hospital, my son set up my computer and he brought one of his executive chairs for me to use at my desk. It has a broad back, about 6" wide and, as I spent more and more time at the computer, this became Angel's throne. She slept on the back of the chair and I could reach back and pat her, or rest my head on her sturdy body. Either of these movements would solicit a loud purr, or if I startled her, an even louder "MeeeeeeOW!" She couldn't hear but she surely could talk!
Having the two feline ladies that were still here with me during my cancers gave me two reasons to get up in the morning, reasons to get back to a normal life. They were my little friends who came back to bed with me when I napped during radiation, adjusted to my schedule, and followed me everywhere, were always here, and I needed them as much as they needed me.
Welcome New Members†
We welcome the 13 new members who joined us during May 2002:
Tewkesbury, Glos., UK
Droxford, Hamp., UK
Two Rocks, W. Australia
Helmer & Linda Long
Corpus Christi, TX
Fort Bragg, CA
Armin & Diane Perseghin
Coconut Creek, FL
Sagamore Hills, OH
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