HEADLINES

Kirklin Clinic Head & Neck Cancer Support Group,  Birmingham, AL

distributed by American Cancer Society

Pat Sanders, Editor

July 2003

 

Facts and Fantasies from 1980

 

In January of 1980 (after being treated previously with antibiotics for hoarseness by a family practice doctor) I saw an ENT who immediately said he wanted to do an exam and biopsy under a general anesthetic. An appointment was made for two weeks later. During that two weeks wait, I had time for much speculation and anxiety since it was obvious what the physician suspected. My entire work history had been in the social work field, and all my jobs had required good verbal communication skills. At the time my job involved a lot of telephone work and training of other social workers. In addition I was getting ready to do some part time private clinical practice in a psychologist’s office. Was all this going to change?

 

I knew little about throat cancer or its treatment. I could remember a neighbor of my parents whom I had been told had experienced throat cancer. He used an artificial larynx in a very ineffectual style. I could see my career headed into oblivion, and I really began preparing for the end of my life. It was my style to deal with things in a very private way, so I told only a handful of people of the impending biopsy and what was suspected. None of these people knew anything about throat cancer or treatments; however it was obvious that the word cancer frightened all of us! Most of my closest friends were in the “helping” professions, social work and clinical psychology, but it was clear they were not sure how to help me.

 

You may remember that twenty-three years ago you checked into a hospital the night before a procedure. I did allow a friend to drive me to the hospital, but I did not want anyone around on the morning of the biopsy. The doctor told me that he would not have a final report until the following morning. Early the next day he came into my room with the look on his face revealing that what he had to tell me was not good. He said there was cancer on both vocal cords. He went on to say that he felt that it was too late for voice-saving radiation but surgery could successfully remove the cancer. Since he had ceased performing major surgery he wanted an otolaryngologist to exam me and answer my questions about surgery. He came, saw me briefly and said he wanted to examine me under an anesthetic himself to determine the best course of treatment. This gave me another twenty-four hours to ponder the unknown.

 

The second scoping confirmed what I had already been told—surgery was necessary. Then my questions started fast and furious. In retrospect, some of the answers could have caused me a great deal of anguish. My first question related to speech, and the physician told me he would refer me to someone who would have me talking again in a short time!

He did not tell me that even with a good instructor, and consistent practice, reliable esophageal speech is not accomplished in a short time! If I had had spasm and been unable to produce any sound—I would have been practicing in vain.

 

Nothing was ever said about an artificial larynx. I asked about dealing with other changes related to quality of life and got no answers. I asked for written material and was told I was already anxious enough, the doctor didn’t want to make me more anxious with further information. That was when I blew up and told him in no uncertain terms that I could deal with the known, it was the unknown that made me anxious! However, I never received any written information until a month after my surgery, and even then it did not come from my surgeon.

 

I took the time from Saturday morning until Monday evening to decide that I would proceed with surgery. I then began the task of telling people what was ahead. Remember, only a few people knew about the biopsy. I had difficulty answering friends’ questions because I had not gotten answers to so many of my own! Telling only a few people made me so aware of people’s fear of that terrible word cancer. I found myself in the position of trying to cheer up my friends and tell them everything would be all right when I had no idea if that would be true. After twenty-three years I still remember the anxiety demonstrated by a few close friends the night before my surgery. These were people who were skilled in helping others but that night they were at a loss for words.

 

Since the time of my surgery, a much stronger effort is being made to inform and support not only patients but caregivers as well. As I looked for psycho-social support, I became a strong believer in the need for such programs for us. Many medical centers (unfortunately, not all) are doing a much better job of providing information to patients and caregivers. Clinicians have recognized that a new means of speech is only one aspect of laryngectomee rehabilitation. The Internet now enables many people to find answers to so many questions before and after surgery. The training format for laryngectomee visitation developed by the International Association of Laryngectomees has hopefully improved the quality of both pre and post laryngectomy visits.

 

There have been many changes since 1980, and I have had the privilege of observing and even being involved in the development of some. Future articles will share more facts and fantasies.

 

Mary Jane Renner, MSW   Mjrhnsa@aol.com

Patient and Family Counselor

7440 N. Shadeland Ave., Ste. 107,

Indianapolis, Indiana 46250

 

Just Get A TEP?

If you have trouble occluding when you first try your TEP, occlude very lightly with a slight downward pressure (away from the entrance to the prosthesis).. exhale gently and even let a little air escape around your finger (or thumb).  Lift finger to breathe in, replace gently to breathe out, letting the exhale out around your finger...open your mouth, don't try to make a sound...press a tiny bit firmer and see if you have air coming out through your lips.  Then, do the same thing and breathe out an aaaaahhh on the exhale.. This should be easy and soft. Relax.

 

CARE OF THE ARTIFICIAL LARYNX                           by Jim Lauder

 

Nothing can be as frustrating to the user of an artificial larynx as having a problem with the instrument. It may sound "different" than it used to, cut out at the most inopportune times, or just quit working altogether.  Here at Lauder Enterprises, we repair a lot of artificial larynges. Many of the problems that we find with the machines that are sent to us probably could have been resolved or repaired by the user if they had just known what to do. I am going to attempt to tell you how to do some of these repairs with this article.

IF YOUR INSTRUMENT IS UNDER WARRANTY, DO NOTHING TO IT.

Most warranties are voided if the user or an unauthorized person attempts to repair it. Let the manufacturer or dealer take care of it.

READ THE INSTRUCTIONS
The first thing that I want to stress is: read the instructions that come with the particular instrument and then read them again. Many times we get an instrument in that does not sound right, simply because the sounding head was screwed down tight, preventing proper sound. This is only one of the simple problems that could have been resolved by just picking up the instructions and reading them. Most of the instruments that are manufactured have very detailed instructions that deal with troubleshooting. Many or all of the following items I will discuss here should be covered in the instructions.

KEEP YOUR INSTRUMENT CLEAN
Dirt has a way of finding its way into just about everything, especially your artificial larynx. Keep your instrument clean by wiping it down with alcohol. Take an old toothbrush to get at the threads and hard to reach places and keep it as clean as possible. Do this regularly and you will help prevent problems.

Do “not” use any industrial strength solvents or rubbing alcohol. Use “pure” isopropyl alcohol. I made the mistake of putting an industrial strength cleaner on one of the plastic (polycarbonate or space aged material) machines and watched it disintegrate in front of my eyes in about 5 seconds. It was amazing to watch. Fortunately the instrument was under warranty and since the warning was not in the instructions to “not” use other solvents it was replaced at no charge. The warning is now included in the instructions.

Pay special attention to the sounding head. The sounding head of most instruments collect dirt easily because of the way they are manufactured. Many have foam rings that sandwich the rigid membrane in the head, allowing it to vibrate freely and produce the sound. These foam rings over time will absorb moisture, dirt, skin oils, cosmetics and various other “nasties” that will eventually affect the way the instrument sounds. The foam rings will also absorb any cleaners that you may use, so be careful not to allow the sounding head to absorb more than it should.

MOISTURE DAMAGE
We get quite a few instruments sent in that are damaged by moisture. An instrument does not have to be immersed in water to be damaged. Damage can result from exposure to rain, perspiration, condensation, or very high humidity. Here are a few pointers to help prevent moisture related damage.

If you have a humidifier which your doctor has recommended that you use, please do “not” set your artificial larynx next to it or near it when you go to bed or take a nap. The moisture can fall out of the air and find its way into your machine and problems can arise.

If you know you are going to be in a very humid environment, protect your instrument by putting a raincoat on it. The raincoat can be a plastic baggy, a children’s balloon, or anything that will allow you to prevent moisture from getting in the machine while still allowing you to use it. Remember though to remove the covering when conditions dry out, because you do not want condensation to form inside the machine as a result of the temporary moisture barrier.

If your instrument falls in the sink, toilet, lake, or in the spaghetti sauce, the first thing that you should do is remove the battery. Under no circumstances should you try to see if it works immediately after it gets wet. First, you should rinse it off with clean water, and disassemble it as much as you can, and set it out to dry. Do “not” put it in the oven or microwave to help speed things up. You may use a hair dryer set on warm, but not hot. I recommend setting the instrument on the window sill in direct sunlight overnight or however long it takes to dry out. Chances are when you put it back together, it will work fine. If not, it will require a visit to the technician.

ELECTRICAL PROBLEMS
While many of the electrical problems that are encountered will require a technician, there are a few that can be addressed at home. Of course the first thing that you should do (after reading the instructions again) is see that everything is plugged in right and that the batteries are charged.

If you are getting absolutely nothing out of your machine, remove the battery cap and run a pencil eraser around the inside of it a few times to make sure that there is not a dirty contact. If you notice any corrosion on the surfaces, rub it with the eraser and if that does not do it, try some fine emery cloth to buff the metal contacts. Anything that prevents good electrical contact will affect the machine in a negative way.

If you get sporadic or intermittent use of your device, there may be a couple remedies you can try before you send it in for repair. If the intermittency is caused by a dirty switch inside the unit, you may wish to put a couple of drops of “pure” isopropyl alcohol on the switches and work it into the buttons by rapid pushing of the buttons and then let it dry. The alcohol works as a solvent and may work in getting your machine back in operating condition. This is usually a temporary fix but it may work for you.

These are just a few examples of the problems that can be resolved at home. If you have questions regarding repairs (and you have thoroughly read the instructions), call your dealer that you purchased the instrument from and ask them for some help. If you do not like the answers that you get, by all means get a second opinion.

Repairs can be very expensive. There are many reputable dealers who handle repairs but then again there are some who are just interested in getting your money. Take advertising brochures and internet claims with a grain of salt. There are some very good instruments on the market, but I know of none that "can be heard in a noisy room" without the assistance of an amplifier. Be aware.

If you have the opportunity to attend an IAL Annual Meeting, I would highly recommend visiting with the vendors there that do free repairs and pick their brains. I will be one of those vendors, there with my toolkit, and will be happy to help in any way that I can.  If you have a problem with your machine and you suspect that it may be a simple repair, we will be happy to help you troubleshoot it over the phone if possible.  Give us a call at (800) 388-8642 or email  JKLvoice@aol.com if you have any questions.

 

Cancer is a Laughing Matter                                               by Rick Rivenbark

 

 

You have been diagnosed with cancer, and your life seems to be a horror movie.  Or maybe you have progressed to the disaster movie stage, or even to tragedy. Now, it may be time for comedy.

 

The little boy listened to his father speak for the first time with an AL after cancer surgery. He seemed both entranced and puzzled, and finally asked, "Daddy, did they replace your brain with a computer?"

 

OK, so maybe that joke is black humor, which may not be your cup of tea.  My point is that making your time with cancer a laughing matter just might save your life, and in any event will make it more pleasant. We know from scientific research that when you laugh your body produces endorphins. The word endorphin is abbreviated from 'endogenous morphine' which means a morphine produced naturally in the body. They have several important and health producing effects on our bodies:

1. They are anti-pain hormones that relieve pain naturally by blocking the signal of pain to the nervous system. They not only reduce pain, but also cause an euphoric or pleasant state of mind to occur.

2. They enhance our immune system: When they are secreted, they activate natural killer cells (NK cells) and thereby increase our immune system's effectiveness.

3. They increase blood flow in shrunken blood vessels: As more and more endorphins are secreted, the shrunken blood vessels return to a normal state allowing blood to flow in a normal manner.

4. Endorphins have an anti-aging effect.

5. Endorphins are anti-pain hormones. The ability to cope with stress is in proportion to the endorphins levels we have in our body. We encounter more difficulties in removing stress unless sufficient amounts of endorphins are released.

6. Endorphins help improve your memory by helping keep the brain cells young and healthy.

 

Those of you who are interested in a deeper study of this phenomenon might want to read Norman Cousins' book Anatomy of an Illness, published in 1979.

 

In addition to laughter, exercise and sex also help produce increased levels of endorphines.  Unfortunately, these two options may be limited or absent at times for cancer patients.  But laughter is always an option. So for those of you who want to take advantage of your endophins, here are some suggestions:

 

See a funny movie (My Big Fat Greek Wedding and Miss Congeniality are two of my recent favorites.) You can also rent dozens of classic comedies on videotape or disk.  Look at joke websites on the internet. You can find hundreds of them by just typing JOKES or FUN into your search window. Read the comics.  Watch your favorite sitcoms.  Share some funny real life adventures with family and friends.

 

A woman who is painfully recovering from a long bout of cancer is lying in bed one morning, having just awakened from a good night's sleep. Her husband, who is lying next to her, takes her hand and she responds,  "Don't touch me."  

"Why not?" he asks.  

She answers back, "Because I'm dead."

The husband says, "What are you talking about? We're both lying here in bed together and talking to one another."           

She says, "No, I'm definitely dead." 

He insists, "You're not dead. What in the world makes you think you're dead?" 

"Because nothing hurts."