August 2006


 

 

Name Of Column Author Title Article Type
Musings From The President Murray Allan Terra Duga  Lary Of  The Year News & Events
Voice Points Dr. Jeff Searl We Empower Voiceless Education-Med
Practically Speaking Elizabeth Finchem Water &  Laryngectomee Experiences
Betweeb Friends        Donna McGary Sex - Single Lary Experiences
Vicki's Midnight Train Vicki Eorio Today - Tomorrow - Whenever Experiences
Jambalaya Jewell Hoffman LA Enacts Smoke-Free Experiences
Bits, Buts, & Bytes Dutch Computer Tips Experiences
New Members Listing Welcome News & Events

 

 

                Murray's Mumbles ... Musings from the President
 
                               Terry G. Duga honored as
             Casey-Cooper Laryngectomee of the Year - 2006
 

1.   It was a great pleasure to present our Vice-President, Finance and Administration, Terry Duga, with the coveted Casey-Cooper Laryngectomee of the Year Award at the annual WebWhispers Banquet held on Friday evening, July 21, 2006, at the Hyatt Woodfield Hotel in Schaumburg, IL.

 

       Terry was one of the original founders of WebWhispers attending an informal meeting held at the IAL convention in Indianapolis, IN in 1998 and, in fact, was one of the first 50 members.  Since the early days Terry has been our Vice-President of Finance and Administration and as a lawyer, his knowledge, skills and research capabilities have been invaluable in WebWhispers' rapid growth.  He has been responsible, not only for the accounts, but for the major plans to make WebWhispers an official 501(c)(3) charitable organization thereby allowing contributions to be tax deductible. In addition he has set up our accounts and credit card services, plus files our tax returns and all other required official documents to permit us to conform with all laws.

      Terry has served as a volunteer with Dr. Eric Blom at his clinic and regularly serves as a delegate to the IAL Annual Delegates Meeting.  He has been employed as an attorney for the State of Indiana and was recently appointed by the Governor as Commissioner of the Indiana Board of Tax Review.
  A letter was received from President George W. Bush honoring Dutch Helms for all his sterling efforts and Terry had the privilege and honor to read it to the members at the WebWhispers Banquet in Chicago.

 
    Terry is an extraordinary individual who is honest to a fault.  As a founding member of WebWhispers we would not have had the success that we have today without his extraordinary dedication and expertise.  

2.    The WW Banquet in Chicago was again orchestrated by our very own Vice-President - Member Services, Libby Fitzgerald, and it was again in accordance with her usual ultrahigh standards.  Thanks again, Libby!  Additionally, at this year's Banquet, Libby was also the recipient of a WebWhispers Distinguished Service Award for all her extraordinary
efforts and exceptional supportive work within WebWhispers, the IAL, many Adenoid Cystic Carcinoma groups, and other community outreach projects and programs  

3.    This is a trying time for us all due to Dutch's illness and on your behalf I wish him peace and tranquility and the absence of pain.  Our prayers and hopes go out to him that he may be our Founder and Webmaster for a long time to come.
 

Best regards to you all.  Take care and stay well.
 

Murray Allan
argus@shaw.ca
 


We are pleased and honored to present the full list of the WebWhispers Awards that were announced at the 2006 WW Reception/Dinner in Schaumburg:

Casey-Cooper Laryngectomee of Year Award - Terry Duga, Indianapolis, IN
WebWhispers Legacy Award - Dutch Helms, El Lago, TX
Distinguished Service Award - Libby Fitzgerald, Sherman, CT
The Dynamic Duo Award - Gary and Janet Miner, Jacksonville, NC
Certificate of Appreciation - Richard Najarian/Bruce Medical Supply
Certificate of Appreciation - InHealth Technologies
Certificate of Appreciation - James K. Lauder
Regional Activities Achievement Award - Scott Bachman, Baltimore, MD
Regional Activities Achievement Award - Roy Boyd, Hackettstown, NJ
Regional Activities Achievement Award - Carl Kilmer, The Villages, FL
Regional Activities Achievement Award - C. W. Moreland, Lee's Summit, MO
Regional Activities Achievement Award - Jack Vogle, McAlester, OK
Regional Activities Achievement Award - Irwin Title, Silver Spring, MD
Regional Activities Achievement Award - John Ulrich - San Angelo, TX
Long Distance Lary Award - Katrina Watts - Bundoora, Australia
Three "Enforcer Awards" (New Mail List Moderators):
Mike Csapo - Escondido, CA
;  Randy Lemster - Las Vegas, NV,
& Carl Strand, Jr. - Mystic, CT
Nine WW "Voice Institute (VI) Project Grant" Recipients:
Fred ArmaniPleasant Garden, NC;  Thomas Cleveland, Kalamazoo, MI
Francine Fambrini, Foster City, CA;
 Phyllis McMullenTaneytown, MD
Ronald Neubert , Meadville, PA;  Linda Rainbow, Cabo San Lucas, Mexico
Pam Ridgeway, Oskaloosa, IA;  Gary Sparks, Radford, VA;

&
Jane Varner, Little Rock, AR



 VoicePoints [ © 2006 Dr. Jeff Searl ]
  
  coordinated by  Dr. Jeff Searl, Associate Professor ( jsearl@kumc.edu )
                               Hearing and Speech Department, The University of Kansas Medical Center
                               MS3039, 3901 Rainbow Blvd., Kansas City, KS 66160

We Empower the Voiceless to Speak:
The State of Laryngectomy Speech Rehabilitation in Kenya

by
Bishop Duncan Mbogo Wanjigi
(Christian Church International Headquarters, Thika, Kenya)

Introduction by Jeff Searl, Ph.D.

I had the good fortune of first meeting Bishop Duncan Mbogo Wanjigi at the Voice Institute of the IAL in held a few years ago in Atlanta. He had registered as a “Laryngectomee Trainee" for the conference. At the time he was using an electro-larynx but his interest in attending the Voice Institute was to learn esophageal speech. As it turned out, Duncan was assigned to my group for the Voice Institute and we initiated esophageal speech training that week. I can't claim credit for it, but Duncan surprised me this past week at the 2006 IAL meeting in Chicago by speaking to me using esophageal speech. This was not just single words but full phrases and sentences! After further talking with Duncan last week, it became clear to me that he had set out to learn esophageal speech over the past 3-4 years not specifically for himself.

Duncan has taken it upon himself to be the ambassador to the world for the small group of individuals with a laryngectomy in his home country of Kenya. His artificial larynx works quite well for his needs in his job as a minister. By learning esophageal speech he opens up the possibility that those folks in Kenya might have another viable alaryngeal speech option from which to choose. I had asked Duncan if I could relay his story through Voice Points. I realize that this column has often been used to describe specific aspects of speech and swallow following total laryngectomy that might be of interest to speech-language pathologists and people with a laryngectomy. This article deviates somewhat from that, offering a description of Duncan's story and the status of laryngectomy rehabilitation in a country with very few resources. As folks interested in alaryngeal speech rehabilitation I hope that we can look beyond our immediate community to see what needs are out there. Cultural differences, availability of trained professionals, monetary limitations, and physical distance from the few trained individuals are just a few of the issues that serve to restrict the rehabilitation process in a country such as Kenya.

Duncan's story is not presented here to simply tug at heart strings. Rather it is intended to be a reminder of the varied speech rehabilitation needs throughout the world and a reminder of the fact that the standard of care in European countries, the United States, Australia and other countries is not necessarily the reality with which people like Duncan must deal. It may be that speech-language pathologists and laryngectomees in other parts of the world can used their creativity to help empower those individuals with a laryngectomy living in other countries. The group of individuals with a laryngectomy is small to begin with and there certainly are pockets around the world where the isolation is even greater.

Duncan has given me some latitude with his words. The text that follows was written by Duncan himself. Some of it has appeared in a Newsletter that he helped publish from the Kenya Association of Laryngectomees (Vol. 1, 2006). I have added a few parenthetical comments and sentences for clarification purposes. Last week, Duncan shared some of his story with me directly. In 1994, he had a total laryngectomy, becoming only the third person with a laryngectomy in Kenya as far as Duncan could tell. In 2006, the tally stands at 50 individuals with a laryngectomy. Not only does Duncan serve as a full time minister within his church, he founded the Kenyan Association of Laryngectomees in 1996 along with Nyaga (now diseased) and a surgeon, Professor Obura.  At the moment, those in Kenya are principally using artificial larynges, sign language, and writing. Duncan is also attempting some esophageal speech training.

************************************

            The doctor looked at me and breathed slowly. "You have cancer of the voice box. You either take an operation and have the voice box removed or have other treatment to control the cancer." The doctor went on, " The operation will mean a full life thereafter. The other treatment will enable you to live for one year. But if you chose to be operated, you will lose your voice forever. You will have to communicate by use of external gadgets, sign language or writing." I was shocked! This kind of disease is found among people who drink beer and smoke and I was never involved in such behavior. And there was nobody in our family who suffered from this.

            The first person to let in on this news was my wife Sarah. The doctor summoned us so that he could explain to them the details. Professor Obura had already warned me of the possibility of both vocal cords being affected by cancer, and after check-ups, my fears were confirmed. The doctor prepared me well in advance for what was going to happen. Again, friends came to encourage me, so I was psychologically set for what was going to happen to me. My love for life led me to opt for the surgery therefore becoming a laryngectomee.

            I was a pastor when trouble with my throat became serious. I found it very difficult to preach. My voice would become hoarse and dry, causing me to drink a lot of water. At first I thought it was a cold. Or maybe I was talking a lot ? or the chalk dust had maybe affected my throat. But my throat continued to become hoarse. I started seeing a doctor. Then, on this day several months later, the doctor told me I had cancer of the voice box!

           I was a pastor. How would I preach without my voice box? I was also the General Secretary of Christian Church International (at that time, African Christian Church of East Africa). I felt like a farmer without a jembe. What would happen if I chose to lose my voice box so as to live? How would I communicate?            After a few days of visiting the hospital, I was operated on at the Agah Khan Hospital in Nairobi. The operation took eight hours. On waking up, I found tubes running through my nose, mouth, and neck and the neck was swollen. It was very traumatic. I tried to talk on waking up only to realize that only a whisper was coming forth. After nine days in the hospital I was discharged.

            Now left voiceless, I did not care what method I was going to use. To begin with, I used a prosthesis, a tube used to channel air from the windpipe to the esophagus. But it proved not good because of complications. [comment from Jeff Searl: In discussion with Duncan this past week, he described that tracheoesophageal speech is not currently a particularly viable option for laryngectomees in Kenya because of costs and access to care.]  I therefore ended up using an electrolarynx. This is placed under the chin, making audible vibrations in the mouth that can be formed into speech. I found this machine a better alternative communication. After receiving the machine from a friend in the US, I did not spend even two minutes to figure out how to use it

.            When I first acquired the electrolarynx, and sometimes even today, there are people who get scared of me. I went to the post office and on speaking people enquired with amazement of who was "talking like a robot". Another incident was a time I went to buy some chips and when I removed the machine to talk, people thought I was removing a gun and they wanted to run away. However, instead of becoming angry at peoples' reactions, I was amused and explained why I was using the machine. Many sympathized with me.

            With the electrolarynx machine I can now preach and do everything I used to do before I lost my vocal folds. I did not have to strain while talking. Loss of voice has not affected my personality. I have accepted it and I have not suffered from low self-esteem because of being different. In addition, my family became very supportive. Incidentally, I was the third person to have a successful operation to remove the voice box in Kenya in 1994; we were only three laryngectomees. The number of laryngectomees in Kenya has now risen up to about fifty.

            In 1996, I saw the need of helping other people who were like me. Therefore, I founded and registered the Kenya Association of Laryngectomees (KAL). The purpose of KAL was to visit laryngectomees in hospitals to share a message of hope with them. In addition to visiting in the hospital, we train patients on the methods of regaining their voice and how to use external machines. We meet every first Thursday of the month in the presence of speech therapists and clinical officers who hold talks with the laryngectomees. Depending on the operation and individual, not everyone is able to use the machine. All these challenges are dealt with during the monthly meetings. Through visits to other laryngectomee organizations in different countries, I have been able to import electrolarynges from Germany and US and distribute them to laryngectomees in Kenya. This has been made possible through the help of the International Association of Kenyans based in Massachusetts, USA

.            Unfortunately, the Kenyan government may not even be aware of the existence of laryngectomees. My desire has been to get in touch with the minister of health. Meeting with other organizations outside the country, I discovered that the governments recognize the presence of laryngectomees. Among other things, the government would help us to get electrolarynges more easily. These machines are not available in Kenya. I am sure that if the government would subsidize the price, our people would be able to get them.

            The International Association of Kenyans helps to donate an electrolarynx to every laryngectomee which includes the machine, charger, battery, manual and a small bag in which to carry the machine. A new machine costs approximately Kshs. 50,000 (Kenyan currency) and a battery alone costs Kshs. 3,500. The laryngectomees are supposed to care for the electrolarynx like an egg; if the machine falls, repairs must be done by companies outside of Kenya and this is very expensive. Because of all the costs, the KAL requires a lot of finances to be able to help the laryngectomees who, according to statistics, live below the poverty line. Although there are still a number of laryngectomees who have not yet received this important instrument of communication, I am grateful for the help we have received so far.

***********************************

Additional Information about Laryngeal Cancer in Kenya from Bishop Duncan Mbogo and Professor Obura: cancer of the larynx is the second most frequent adult head and neck cancer in Kenya.  There may be regional differences in the rate of laryngeal cancer with the vast majority of cases occurring in people in the Central and Eastern Provinces of Kenya.

Kenyan cancer treatment is not "done in an orderly manner." There is little recognition among Kenyans that prolonged hoarseness may indicate cancer of the throat. For this reason, many people with laryngeal cancer do not arrive for medical care until the cancer is quite advanced. Frequently, people show up once their breathing is being affected but at this point the cancer is usually quite large. There are very few medical centers in Kenya that manage cancer and the number of specialists in these centers is small.

Most patients are too poor to reach the few centers that are in the country and there is poor infrastructure within the country, making travel difficult. Bus fares may be unaffordable to make the journey for many Kenyans who are living below poverty. Some patients are reliant on alternative medical practices to treat the cancer until the cancer grows too large. Because most cancers of the voice box are diagnosed late in Kenya, most patients end up with total laryngectomy rather than more conservative surgeries or treatments. Many patients with cancer do not have access to radiotherapy due to severe financial constraints and therefore relapse/poor prognosis is common.

Within Kenya, those interested in laryngectomy rehabilitation are of the general mindset that the artificial larynx is perhaps the best communication alternative given the obstacles and inadequacies within the country. Tracheoesophageal speech may be problematic for a variety of reasons including prohibitive cost of devices, lack of services, poor infrastructure making travel to hospital difficult, poverty precluding travel to doctors and therapists, lack of clean water for cleaning devices, etc. There are limited experts available to try to train esophageal speech in Kenya.

The Kenya Association of Laryngectomees has now had two workshops (2005 and 2006) focused on:  1) training artificial larynx speech and esophageal speech,  2) addressing health, nutrition, swallowing and emergency resuscitation issues, and,  3) providing counseling (individual and group) in an accessible language.

For more information about the Kenya Association of Laryngectomees contact:

Kenya Association of Laryngectomees
Town House, 4th Floor, Room 419
Kaunda Street
P.O. Box 42086
Nairobi, Kenya
Tel: 020-250351



    Practically Speaking ...
                                                                                
By Elizabeth Finchem, Tucson, AZ
 


The Subject: Water and The Laryngectomee

Water is nurturing and necessary for the health of our body, mind, and spirit.  We drink it, bath in it, play in it, and some even work on it.  If you have ever skinny dipped you know first hand how it can free the spirit.  Water has power.

Unfortunately, there are the disclaimers stating,  "Of course, laryngectomees can no longer swim".  Oh, really?  When asked why such a statement was made, the response is usually " CYA"  for an organization in this age of litigation.  Without fail, the responder has personally kept their distance from swimming and water activities in the first place, perhaps due to their own fear of water, or simply a lack of interest in it altogether.  At a Conference on Laryngectomee Rehabilitation, a couple from Southern California told me they were sorry they followed their doctor's order to fill the backyard pool in with dirt after the husband's surgery.  Not only had giving their power away reduced the value of their home, but they had just learned that there are ways to continue enjoying a pool.

Fortunately, my pre-laryngectomy counseling at Mayo Clinic (Rochester, MN) with Bob Keith provided positive and supportive information.  I was shown video tapes of two women who were teaching classes using esophageal speech.  Further, I was made aware of a device called the Larkel that would allow me to continue swimming, boating, and fishing.

It was October '78 when I was rolled into the OR with my goals firmly in mind for my rehabilitation.  Later, I was invited to attend the Mayo Clinic "Laryngectomee Rehabilitation Seminar" in June '79 for an intensive week to work on my esophageal speech techniques and to try the Larkel.  As promised Bob Keith and Dr. Damste, M.D. (from the Netherlands) met me at the hotel pool for a Larkel fitting and training session..  It was only six months after my follow-up radiation therapy and a problem with fistulas on the double incision (two surgeries on the same line). It was a bit too soon for a smooth result.  I did get a good fitting and I did swim, but during the effort I coughed a great deal because my trachea was still tender and trying to expel the rubber trach tube.  We decided to give my body a little more time to heal and I would then purchase the right size Larkel.  I ended up buying a 10 and a 12 cm because of size fluctuation, caused by not using it frequently enough.

This would be a good time to share that I was also shown a shower collar at this Seminar. I had already worked out how to wash my hair under the kitchen sink faucet, or kneeling in the bathtub, or leaning forward in the shower.  All accomplished without benefit of a shower collar or cover of any sort.  My question was, "so...if I wear this collar won't I still have to find a way to scrub under it"?  I never have purchased or used one.

The summer of 1982 I attended the IAL's Voice Institute in Wichita, KS and met Martha Strausser, from Munich, Germany.  She was fitting and training the attendees interested in using the Larkel.  This time I was more than ready.  It worked like a charm and I was able to swim several lengths of the pool that day. Probably due to the fact that I never smoked, my lungs were in good enough condition to hold my breath for long periods while swimming.  Actually, several laryngectomees had a real pool party that day. Two names that come to mind are Bill Desbiens, a long time Larkel user, and Paul Bricker, who jumped in clothes, suspenders, wallet and all.  During our lunch break, Martha sold me my first Larkel. She also said that if I would be interested in becoming the U.S. Distributor she would teach me how to fit and train other laryngectomees?  I did this for several years.

The day came when I realized that the Larkel was great for swimming laps for 30-45 minutes, but not practical for boating or fishing for several hours.  While at Lake Michigan one summer day I stationed two of my teenage children 50 feet in front of me,  one to my right and the other to my left as spotters.  I experimented in the waves and wind by taking a deep breath, holding it while occluding my stoma with my thumb and side stroked my way to each of my children and back to the beach.  It worked!  I wasn't ready to canoe, water ski or scuba dive again, but at least I knew that if a boat capsized or I fell off a dock I could side stroke or back kick back to safety.  The most important thing to remember is DO NOT draw in breath (or water in this case), as with gasp.  If you are a swimmer you already know that blowing out gently prevents water from flowing inward. The same principle works with the stoma, nose and mouth.  If a little water gets into the stoma you will cough it out.  No problem.

There are a few things I learned by trial and error. Swimming in Santa Monica Bay, or near sewage drainage pipes anywhere, it is really not wise for the neck breather.  Surprise waves may knock you down unexpectedly and you get those germs in your stoma. Obviously!  The next day you will cough up the green stuff.  Swimming in a clean swimming pool is by far safer over all.  We have all heard "never swim alone" and it holds especially true in this case.  Never get in the water under the influence of alcohol or medicine that impairs judgment.  Use the "do not drive or operate equipment" label on prescriptions as a rule of thumb.  The wife of a laryngectomee told me she was scared to death that her husband would drown because she had seen him (after a few drinks) push off from the wall of the pool with both arms out-stretched as he would have pre-op, and he took in enough water to make him wake up coughing pretty hard. He said, "I just forgot that I had this hole in my neck."  So, I ask you, the reader, if a few are not careful, does this mean that all laryngectomees should be discouraged from enjoying the water?  For me, it has always been a matter of total rehabilitation, meaning you strive to reach the level you were living when your life was interrupted by cancer and a surgery called laryngectomy.

Over the nearly three decades as a laryngectomee I've had the pleasure of meeting a few water babies who work on the water.  There is a fellow who has continued to work as Harbor Master in San Francisco Bay in spite of a laryngectomy a long time ago. Yes, he admits to "ending up over-board more than once." There is another man in Florida who still runs his boating business out of the Florida Keys. In San Diego, CA and in Hawaii there are a few surf boarders who put together a rig that enables them to continue their passion for surfing.  I am sure there are more stories out there.

In 1984, I attended the Voice Institute in San Diego, CA.  We had Saturday afternoon free to visit the city or do whatever we wished.  Three SLP's had reserved a Catamaran at the Mission Bay Marina.  I asked if I could join them as a fourth.  At first they were surprised and very  reluctant.  They had seen my swimming demonstration.  I promised to wear a life jacket.  It was decided I could go, but I'd have to sign a waiver.  I agreed, but in the end I didn't need to. We had a wonderful day.  I learned to sail the Catamaran and they gave me the helm to sail up and down Mission Bay all afternoon.  When we had a team meeting that evening, the most reluctant SLP confessed that he had learned an important lesson that afternoon about laryngectomee rehab. What had seemed impossible and scared him to death, ended up changing his view of what we are capable of where water is concerned.

Calculated risks are worth taking in my book.  For example, I lived in Northern CA and stayed on my power boat in Marina del Rey when I was working in Southern CA.  I joined a sailing club there so I could crew on some of the bigger boats.  At sea, while working on deck, I wore my life jacket plus a harness under it with a long lead in case I went over-board and perhaps knocked unconscious. Either I could use the lead to get back to the boat quickly or, if necessary, someone on board could pull me in.  In all the years on the Pacific, I never faced a situation that caused me to go overboard...even in bad weather.

Before my laryngectomy, we camped and canoed as a family in the Great Lakes area every summer. After my surgery I would pilot the 17' boat so my teenagers could water ski, but I would fish from shore when they took the canoe to go fishing.  It took me 22 years to get past the fear of canoeing again.  Canoes with children and gear in them are unstable as you may know.  One of my sons and a grandson helped me conquer this particular fear by adding Styrofoam sheets under the seats in case we rolled over in the Deschutes River. We had a grand day on the river, caught a few fish and I didn't have to find out if the canoe would float upside-down.  When you overcome a fear, it is a GREAT feeling.

If you are a water baby, you know it. There are a few basic steps to ease you into the water again. Some communities have YMCA's, rehab centers, or hydro-therapy clinics that have pools with a bottom that can be raised for children or disabled clients.  They hold water aerobics classes that are wonderful exercise for overall muscle tone.  If you can't locate a pool with this special feature just start in the shallow end of the pool working across the width of it until you are ready to move into waist or chest deep water.  The buoyancy of the water is a great help for those with arthritis, an injury, or atrophied muscles from lack of exercise.  If a laryngectomy included neck dissection, the arm exercises are particularly helpful to normalize range of motion and proper support for the shoulder.  Toning your torso muscles will also help with speech and breathing.

Instead of sitting on the edge to dangle you feet in the pool get in and try a few of these suggestions:

1.    To get started simply walk across the shallow end of the pool and lift you legs as high as you can in the water with each step.
2.    Later you can add ankle weights to add a degree of difficulty for a better workout.
3.    When you are comfortable with the water waist deep move into water that is a little deeper, about mid-chest, then with arms out stretched you can slowly push then pull the water with your hands.
4.    As that exercise becomes easier for you try using quart or gallon plastic milk or water jugs with handles.  The degree of difficulty to draw these through the water can be adjusted by partially filling the container with water.
5.    Hold onto the edge of the pool (or ledge if there is one) with one hand, and place the other against the wall to prop yourself out away from the wall.  Do keep your stoma above the water level.  Try a crawl kick for as long as you can in this position.  Take a rest and try this a few more times.
6.    While facing the wall hold on with both hands and move one leg at a time as far as you can backwards to tighten the back thighs and buttocks muscles.
7.    Place your back against the wall and your head and hands on the ledge and flutter or frog kick.
8.    Hold onto the edge with one hand as if it was a practice bar for a dancer, and lift your knee to the front, then out to the side, then push your foot out to the back as far as you can for a good leg stretch.  Do this on both sides.
9.    Some, like my friend Rose from Iowa, likes to drop a quarter in the shallow end and dive down to the bottom to retrieve it.  It's pretty easy to stand up and rest if needed.
10.  Others like to go down a slide or diving board for a big splash and swim back to the ladder.
11.  Here's another hint, if your stoma is too large for a safe occlusion, some have used a baby bottle nipple on the thumb to get a tight seal..

If you have never learned to swim and have no desire to learn now, it's okay.  At least you can get some physical benefit from playing in the pool and cooling off at the same time.  Try some of the exercises and get used to being in the water.  It is possible that you may be in a position to save someone's life if you are not paralyzed by fear of being too near the water.

In Europe, daily exercise year round includes using the pool to swim frequently and is a way of life all year.  The last I heard there are laryngectomee swim clubs in Germany.  I've seen the photos.  At some of the Mayo Seminars in the early '80's we have had a dozen or more laryngectomees in the water at one time using their Larkels to swim.  The difference seems to be the way this activity is presented to you at the time when the whole idea of having a stoma is brand new.

Here's to your good health.  Enjoy!



 
 BETWEEN FRIENDS          Donna McGary
                                     "That which does not kill us makes us stronger"
 


Sex and the Single Lary

When I was in High School back in the late sixties we had elections for class officers and one inspired young future campaign manager, worked up a poster that had the letters SEX emblazoned across the top with the predictable, now that I have your attention, second line...vote for...XYZ.  We all thought it very clever at the time.  Being 15 in 1968 in Maine meant that discussing sex was still pretty risque, even if your parents were liberal Democrats!
 
I spent my 20's in a religious cult (don't ask - that will take a book, not a column!), and by the time I left that, I was "rarin' to go".  It was the 80's and I was not alone.

I negotiated those turbulent shoals and a decade later landed a nice boyfriend with a PhD from MIT just as I went back to college and on to graduate school myself.   The gods were not kind.  We got bored, I got sick,  and "poof" he was gone.
 
I had more than a few moments where I fantasized about some wonderful doctor, since they were the only interesting men I saw on a regular basis, after I first got sick.  I kept holding out hope that one of them might see me as special.  They all found me fascinating, all right, because, to them, I had a rare cancer in a rarer still spot with an equally problematic response to treatment.  NOT what I had in mind!  Please understand, my doctors were wonderful; however my favorites either bore a startling resemblance to Captain Kangaroo and were already happily married or were alarmingly young. 
 
Now I am a gerontologist - that means I study aging but I am not a medical doctor.  I want to understand the psychology of aging. So I am around a lot of elderly people. While I am happy to report that many men well into their eighties and nineties appear to still have that spark (shall we say!), I was dismayed to be the recipient of their interest at a time when men closer to my own age seemed to have lost interest in me entirely.  This is not surprising, since I lost interest in me, too.... at least that particular part of me.
 
When I first found out I had cancer it was just the beginning of a cascade of complications.  Sex was the last thing on my mind for quite some time.  By the time I was well enough to remember my libido, I had lost my confidence. I also had a hole in my neck, a nasty chronic cough, and was a very different woman.
 
I always thought I was cool with sex since it's a natural thing until - unless?  Just think about this.  That terrific scene in the movie "When Harry Meets Sally"...you KNOW the one.  It just wouldn't work if she was using an EL!!  And it wouldn't work in real life either.

Fast forward.  I got together with another lary through one of those matchmaking endeavors by a well-meaning mutual friend that usually inevitably ends in disaster.  Despite the odds, this other lary and I discovered we did like each other. 

There came a time when I talked about not being able to "whisper sweet nothings" and his understanding smile said it all.  Read my lips just got a whole lot sexier. 

My best friend said she thought it was great we were both larys.  She knows how self-conscious I became... a hole in the neck is just not sexy no matter how many jokes you make about "Deep Throat".  Her exact words were, "It is a non-issue now. Get beyond it. You are just a man and a woman getting to know each other".  Hmmmmm.  She has a point, doesn't she?

Do you know they have actually done studies that prove that people who have sex regularly live longer and healthier lives?  So can I get a prescription for this? 
 
In the immortal words of Marvin Gaye:
Let's get it on
You know what I'm talkin' about...
Let's get sanctified
 
I trust that you all understand I am not being cavalier about our sexuality.  Cancer and its aftermath can and often does wreak havoc on the most loving and passionate relationships.  Love and intimacy are undeniably one of life's great pleasures.  So how do we move on?  I am thinking with honesty, humor and courage...and maybe the well-directed intervention of a friend!


   Vicki's Midnight Train from GA
                                                                                  
                                   By Vicki Eorio
 


Today - Tomorrow - Whenever

You know the sound of the train whistles?  And how usually they are so interesting and comforting to me?  Well, not tonight.  Tonight for some reason they convey a sense of urgency.....hurry, hurry, hurry, hurry!  Don't stop, don't stop, don't stop......time is short, time is short, time is short.......

Their message is annoying; in fact, it is agitating.  I don't need a reminder to hurry or that time is short.  That is one of the reasons I can't sleep.  There is so much I need to do and so little time and so many deadlines........and I am so tired.

It is relief as the trains fall silent as they go on to the next town and go closer to their destination.  I fall asleep but it is not a restful sleep.  It is a guilty sleep.  I should be up, I should be doing things, I should review my list of things I need to do.  Can't I sleep tomorrow?  But only after I do all the things I NEED to do.

I NEED to:

*    Pay the bills, it is the first of the month
*    Email my kids, it has been a week
*    Contact at least two old friends who wrote 2 weeks ago
*    Answer the emails from kind and caring friends
*    Read WW to see if I can offer assistance based on the postings
*    Finish the office work I brought home
*    Do the wash
*    Do the ironing
*    Make menus and a shopping list for next week
*    Make deviled eggs out of the 10 eggs I hard boiled earlier
*    Order medications from that #%& pharmacy my company says to use.
*    Water the houseplants
*    Deadhead the rose bush that means so much to me and is not well
*    Write a thank you note to the old friend who bought me lunch last week
*    Go through my professional clothes that I no longer wear because of my trach.
*    Pack them for an organization for women just entering the work force.
*    Organize my supplies and tools for trach care.
*    Pack up supplies I no longer need and send to a lary who might need them.
*    Write a letter challenging the charges from one of the specialists I was referred to.
*    Straighten out the cupboard so I don't buy duplicates of canned goods.
*    Update the calendar of family and friends birthdays for second part of the year.
*    Wax the floors in at least two rooms
*    And, and, and, and........

In the morning I heard the trains again and wondered why their message had been so upsetting last night.  And why I was still so tired and cross.  It was a Sunday, usually my day or, at least, my morning.  I sit in our quasi sunroom (an afterthought addition to this funny old house we bought) which is usable about 30% of the year......no insulation but open to the sounds of the birds in the morning, I sat with the Sunday paper that I read cover to cover.  It is a family joke.....talk about useless information but I love it.  Cut coupons, look at and dream about great furniture and accessories that will not be in this house, and write down websites I will never have time to explore.  Yet I am distracted because I keep thinking of that list.  I am not really into my usual comfort zone.

It was as if Someone was sending me a message.  As if it was choreographed, our 4 rescued animals (3 cats and a dog) came into the porch and got on the couch.  One cat almost on my head, one tucking his head under my arm, one stretched out looking at me with the eyes of an innocent and the dog with her head on my lap.  I start to laugh, trying to give pats to each one equally (because they do keep track!) and then I notice outside the window to see a remarkable thing.  We have a bird feeder on a Shepherd's hook, thinking that the squirrels would not be able to get to the food.  Well, as the cats and I watched, a squirrel shimmied up that smooth iron rod, got to the food in the bottom of the feeder, slipped back down while hanging on, and once again shimmied up for more.  Even the cats were impressed!  And suddenly I knew.

My list had nothing for me, no time for me to refresh my soul by reading or just sitting quietly, no time to listen to my favorite music, no time to think or pray or plan, no time to nurture the plants, no time to love the pets, no time for a walk, no time to step back and review priorities.

I think that those of us who have had or are experiencing active cancer disease have this sense of urgency, of time being lost, of a fear of not getting things done.  Those feelings are common not only to us but to others facing physical or emotional challenges.  And they are valid.  The feelings sometimes push us forward to achieve things we didn't think we were capable of doing.  They move us in the direction of evaluating what we want to do with the rest of our lives.  They encourage us to evaluate past and present relationships (and give us courage to perhaps confront and resolve issues related to those relationships).  They keep us awake, they disturb us, they can isolate us.  BUT we have a responsibility to ourselves to take care of us, not just physically but emotionally.   If we don't, what will be our legacy?  Will my tombstone read "She kept a clean house," or will it read, "She took time to take care of herself so she could give to others?"

And about my list?  This is the best part!

*    I didn't pay the bills that Sunday.  I paid them and mailed them on Monday.  Got there just fine
*    My kids were so busy living their lives they wouldn't even read my email sent on the weekend and good for them
*    I did write short notes to friends saying I loved them and would be in touch later when I could do justice to writing them
*    I did check WW and wrote 3 people, hopefully my response was helpful to them
*    Office work?  No one even noticed!!!!  Going in 30 minutes early on Monday covered me just fine
*    The wash?  Just what needed to be done
*    The ironing?  Didn't get there but discovered in the back of my closet clothes that were just fine to carry me through the week.  Never would have considered them otherwise
*    Menus and shopping list?  Didn't happen but I found food buried in the freezer that needed to be used.  And what is wrong with leftovers?  Just pretend they are tapas
*    Deviled eggs?  Became additions to salads and part of my lunches I take to work
*    Order the medications?  Well, almost.  I took the list to work and completed it on my lunch hour (along with those great hard boiled eggs)
*    Water houseplants?  That was a MUST do and it did happen along with deadheading the rose bush.  It was rather late however (like 8:00 PM but it did happen)
*    The clothes?  That is a work in progress and I am doing a little every day
*    Organize my work area?  Again a work in progress
*    That letter to the doctor?  Probably good that it was written later in the week when I was calmer.
*    Straighten out the cupboard?  Had to happen since I didn't do the shopping list.  Just like with the clothes, we had creative meals
*    Update the calendar?  Next week.....
*    Wax the floors?  Nope but we did vacuum up the animal hair.
*    And, and, and?  I read a great paperback my neighbor lent to me.

Everyone and everything survived.  And although I had to fight my Irish guilt by not getting everything accomplished on the list, I know my heart is healthier and I believe my body is also.

So the next time the train came through, it said, "slow down, slow down, slow down" and when the whistle disappeared in the distance it was saying, "later, later, later."  See you tomorrow!  Vicki


        JAMBALAYA
                                                                          
By Jewell Hoffman, New Orleans, LA
 

Louisiana Enacts Smoke-Free Legislation!

  I cannot tell you how very proud I am.  This past Friday, June 30, 2006, the Louisiana Legislature passed into law Senate Bill 742, the Louisiana Clean Air Act, by Sen. Rob Marionneaux, Jr., D-Livonia - which prohibits smoking in restaurants and other public venues, and House Bill 1010, which prohibits smoking inside vehicles with passengers under age 13.
  
  The reason that I am so proud is, because five years ago, I was approached by a young woman that worked for the American Cancer Society, who was referred to me by others in the agency, to help her with a project.  I had spent many years volunteering, and had been on the local board.  She was new, and was told that I might be someone that could help her to spearhead a plan, to ban smoking in Louisiana.  At the time, my daughter Tricia had been very active in the community too, speaking to schools and organizations on the dangers of smoking.  She had earned local titles in the Miss America system, and used me and my experience for her platform.  Together we met in a Shoney's Restaurant and began to build our plan.  My idea was to approach it from another angle -- to give the "power back to the people," one city, one parish, one region at a time.  The idea was to talk about peoples rights, or the lack of them.  Another part was to bond with other associations that felt the same way about smoking.  The American Heart Association became one of our greatest allies. 
  
  For me, most things are visual, so I drew for her a picture of what I thought the structure of the plan should look like.  Beginning with the ground and the roots of a tree.  I told her that the "roots" would represent the "core groups" (ACS, AHA) that would ban together to spread the word, and train others to speak to groups.  Each group would have "one representative," that would in turn meet with the "core group," and then go back and share information and instructions with the others -- these others would be "volunteer educators," who would form the structure of the "tree."  As these "volunteer educators" would go out and speak to organizations, and educate them in each "city" -- that would form a "branch" that may multiply into many smaller branches or "cities."  Of course from there hopefully would spring "leaves" which would be the involvement of "local government officials" and "heads of strong organizations" that wanted to get involved in the movement.
  
  Since I was a very busy person back then, I did tell them that I had to limit my involvement.  I spoke to organizations for them, and helped them set up a training program for their "volunteer educators."  I helped them to build up an "educational packet" to be given out to the groups when then spoke, and helped them institute a "sign up and pass it on petition," for people to pass on to their friends on the Internet.  The idea of "Taking Back Local Control" was a good one.  People really responded to that.  It wasn't just about smoking, or second hand smoke.  It was about "giving control back to the people," and people really responded to that.  Once you had your foot in the door with that, then you could really educate them on the hazards of second hand smoke, and the importance of passing legislation.
  
  As time went by, I would get e-mails telling me we won this city and that city.  Then we would win this Parish or that Parish (counties for some of you).  Then I began receiving e-mails, that we had brought aboard this Senator or that Representative.  Through this slow deliberate plan, Louisiana has come full circle, and finally Governor Blanco has signed the bill.  It will go into effect January 1, 2007.
  
  For those of you that don't believe that one person can make a difference, take it from me, I didn't believe it, but now I do -- they can!  If every "one person" gets together with another person, and each person just does a "little bit," it can spread and build into something that you could not have imagined possible.  Five years ago, I could not have imagined that those meetings in Shoney's over coffee, with paper and pen, could help to change the thinking and mindset of people all over the state.  I didn't do much.  I only did my part.  And as each person did their part, we grew something magnificent and powerful -- as mighty as an OAK!!
  
  Congratulations Louisiana!!  You are one of the first Southern states to enact smoke free workplace legislation!!  God bless!


   Tidbits of Interest
                                                                                  
Contributions from Members
 

   New Laryngectomee after 29 year delay.

I was diagnosed with stage one, non-invasive cancer of the larynx and treatment of choice was radiation.  At the time I was in my early forties and my nine children were all still young, living at home, and needed their mother.  The treatment was successful.  Although I was hoarse from time to time, I retained my voice.  And I continued to smoke!!

Twenty-nine years later - last year - I learned I had stage 3 cancer in the subglottic area or false chord of the larynx and it extended into the lymph system on the left side.  After consulting at two major medical centers - and doing research on the Internet - I accepted the reality that the only way to save my life was a total laryngectomy with excision of both lymph systems - right and left - as a precaution.  Radiation was NOT a choice - primarily due to the previous radiation 29 years ago.

Do I regret the radiation years ago?  Of course not!
Do I regret the surgery last year?  Of course not!
Do I regret smoking?  YOU BET!!  But I was a true addict who stopped many times over the years only to start again.  Nothing seemed to work - except horror at the ENT doctor's words, "You're cancer has come back!"  THAT FINALLY DID IT!!  I have not had a cigarette in nine months - not great but better than nothing.

Am I cured?  Possibly not.  But in the end, we are all in God's hands.  I am grateful for all the years that I could tell my children and my whole family how much I love them.

I speak now with a TEP - and I'm VERY grateful for that, too.  And none of my nine children smoke so maybe an example worked

Best regards to all of the wonderful members of WebWhispers!!   Honey Sullivan Moga

   IAL Sets 2007 AM/VI Location and Dates:
 
News Flash:  Next year's IAL Annual Meeting and Voice Institute will be held in Burlington, Vermont, 10-14 July 2007.  The accommodations will be at the Sheraton Burlington Hotel and Conference Center ( http://www.sheratonburlington.com/main.html ).


                          Dutch's Bits, Buts, & Bytes
 
(
1)   QUESTION:  Suddenly, whenever I click a Web address contained in an Email, I no longer get a browser window showing me the page.  I have to "copy and paste" the address into Internet Explorer.  How can I get it to work properly?

ANSWER:
  This problem occurs most frequently when you have two Web browsers installed and your computer is not sure which should be used.  It can also occur if you install and uninstall another browser, such as Firefox or Netscape.

To correct this, close Outlook Express and then open Internet Explorer.  Go to the Tools menu and select Internet Options and click on the Programs tab.  Check the box that says "Internet Explorer should check to see if it is the default browser" and then click "OK."

Launch Internet Explorer, and when you see the box pop-up that says "Internet Explorer is not currently your default browser.  Do you wish to make it the default?" click "Yes."

If you are using another Web browser like Firefox, Netscape or Opera, you will want to close Internet Explorer at this point and open your Web browser of choice.  It will then alert you that it is no longer the default browser and ask you if you want to change it.  Click "Yes." Open Outlook Express, and it should be working normally.

There are a few situations where this problem may be caused by a glitch with file associations.  If the above fix does not solve the problem, have a look at Microsoft Knowledge Base Article 177054 for detailed instructions.

 
(2)  Attention All Windows Users (but especially Windows 98, Windows 98 SE, or Windows ME users):
 
Our friends at Microsoft have prepared a little present for everyone who uses Windows 98, Windows 98 SE, or Windows ME.  On July 11th, 2006 Microsoft stopped supporting those platforms. No more security updates, no more technical support, nothing.  You are now, officially, on your own. Wait, there's more.  On October 10th, Microsoft will end all public assisted support for Windows XP Service Pack1 (SP1).  After this date, Microsoft will no longer provide any incident support options or security updates for this retired service pack. Fortunately, if you have Windows XP, Microsoft isn't completely abandoning you.  All you have to do is upgrade to Windows XP Service Pack 2.  If you have been religious with your Windows Updates you probably upgraded to Service Pack 2 back in early 2005.  If, however, you still have Windows 98, Windows 98 SE, or Windows ME, and don't want to upgrade to Windows XP, things are a little more complicated.  To protect your legacy operating system from future exploits, it is STRONGLY recommend that you:

1. Stop using Internet Explorer and switch to an alternative web browser such as Mozilla Firefox, etc.  If you still have Windows 98, Windows 98 SE, or Windows ME, using Internet Explorer is the surest way to infect your newly orphaned computer with viruses, spyware, and malware.  STOP USING INTERNET EXPLORER!  You don't need to uninstall Internet Explorer -- in fact, you can't.  Just stop using it.
2. Get a firewall.
3. Get a good, up-to-date antivirus program. 
 
Do those three things, and you should be able to keep using Windows 98, Windows 98 SE, or Windows ME for years to come. ( I do NOT recommend this option, but it IS an option you CAN select.)

(3)  Thanks To All ...
 

Although I was regrettably unable to attend IAL 2006 and our annual WebWhispers Reception and Banquet, I do wish to publicly thank both the IAL and WebWhispers for the two awards they presented to me, in absentia, at their meetings in Schaumburg.  The IAL's Humanitarian Service Award (above left) and the WW's Legacy Award (above right) are strikingly beautiful and I was both humbled and honored to be presented with them.  My regrets are, of course, that I was unable to attend these functions, was therefore unable to accept these awards properly, and was unable to express my deep appreciation and gratitude to you all in person.    It has been a pleasure for me to work with all of you over these past years and I hope and trust that our mutual efforts have made and will continue to make a positive "difference" in the lives of many within our laryngectomee community,  So, rest assured, that I will always truly cherish both awards and the gracious and inspiring letter from President George W. Bush that also accompanied these special awards.
 

Picture of Letter Pending Reprint Permission
from the White House

Thanks again to you ALL and God bless!

 

   ListServ "Flame Warriors"   


                                                                                Terms of Importance
flame

1. n.   A hostile, often unprovoked, message directed at a participant of an internet discussion forum.  The content of the message typically disparages the intelligence, sanity, behavior,  knowledge, character, or ancestry of the recipient.
2. v.   The act of sending a hostile message on the internet.

flame warrior
1. n.   One who actively flames, or willingly participates in a flame war ... (Another Example Below) ...

Rottweiler Puppy

Rottweiler Puppy is clumsy, marginally articulate, unsteady in his often playful attacks,
but anyone who cares to notice will see that one day he will be a fierce and powerful
Big Dog.  HINT: By showing some patience and kindness to Rottweiler Puppy in his formative
stages prudent Warriors may gain a steadfast and formidable ally.

Above courtesy of Mike Reed
See more of his work at: http://redwing.hutman.net/%7Emreed/  
 

  

Welcome To Our New Members:

I would like to welcome all new laryngectomees, caregivers and professionals to WebWhispers! There is much information to be gained from the site and from suggestions submitted by our members on the Email lists.  If you have any questions or constructive criticism please contact Pat, Donna, or Dutch at Editor@WebWhispers.org.

Take care and stay well!
Murray Allan, WW President

     We welcome the 33 new members who joined us during July 2006:

Peter Caldwell - Caregiver
Bridgewater, NJ
Andrea Canning - SLP
Charlottesville, VA
Neil Chaddock
Stoke-on-Trent, Staff, UK
Paul Charron
Pembroke, NH
Louis Cicchetti
Willowbrook, IL
Steven Crandell
Dallas, TX
James DiNicola
Dekalb, IL
Mike Engert
Purcell, OK
Terri Fisher
Tallahassee, FL
Roman Flores Figueroa
Satelite, Mexico
Therese Galowitsch - Caregiver
Frisco, TX
Ruth Hickmon
Spring, TX
Mike Hottle
Fraser, MI
Joanne Lasker - SLP
Greenville, FL
Jennifer Maurer - SLP
Royal Oak, MI
Russell McFarland - Larynx Cancer Patient
Fayetteville, AR
Ken Nicholson
Gracemere, Qld, Australia
Clint and Diane Orland
Aurora, IL
George and Leah Ostrander
Fort Lauderdale, FL
Ellen Pedroli
Haarlem, Holland
Robert V. Pierce
Auburn, CA
Edward T. Pinder - Caregiver
Baltimore MD
Edward & Ellen Pinder
Great Cacapon, WV
Ronald Ross
Greeleyville, SC
William E. Sievers
Randolph, NJ
Don Spicer
Grandhaven, MI
Phillip A Thorp
Pelham, NH
Jeanne Tibbits
Port Isabel, TX
David S. Tomlin
Decatur, IL
Leslie Wood (Returning Member)
Warminster, Wiltshire, UK
Jan Kennedy
Zionsville, PA
Casey Childs
Carrollton, TX
Jerry Kowalewski
Rockford, IL



 
WebWhispers is an Internet-based laryngectomee support group.
  It is a member of the International Association of Laryngectomees.        
  The current officers are:
  Murray Allan..............................President
  Pat Sanders............VP - Web Information
  Terry Duga.........VP - Finance and Admin.
  Libby Fitzgerald.....VP - Member Services
  Dutch Helms............VP - Internet Services
  Herb Simon.........Member, Board of Directors
      

  WebWhispers welcomes all those diagnosed with cancer of the
  larynx or who have lost their voices for other reasons, their
  caregivers, friends and medical personnel.  For complete information
  on membership or for questions about this publication, contact
  Dutch Helms at: webmaster@webwhispers.org   

 

Disclaimers:
The information offered via the WebWhispers Nu-Voice Club and in
http://www.webwhispers.org is not intended as a substitute for professional
medical help or advice but is to be used only as an aid in
  understanding current medical knowledge.  A physician should always be   
consulted for any health problem or medical condition.
************
The statements, comments, and/or opinions expressed in the articles
in Whispers on the Web are those of the authors only and
are not to be construed as those of the WebWhispers management,
its general membership, or this newsletter's editorial staff.



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 § 170.



  © 2006 WebWhispers
Reprinting/Copying Instructions
can be found on our
WotW/Journal Page.