April 2007

 


 

 

Name Of Column Author Title Article Type
News Views Pat Sanders Memoriam News & Events
News Views Pat Sanders Library News & Events
News Views Pat Sanders WebWhispers Cruises News & Events
Voice Points Nancy K. Roberts, RN, BSN Between Surgery And Speech Education-Med
From The Farm Bruce "Buck" Martin How I Got Here - Pt 2 Experiences
A Scottish Accent Rosalie Macrae National Self-Flagellation Day Experiences
Vicki's Midnight Train Vicki Eorio April Experiences
Worth Every Penny Lanny Keithley Mirror, Mirror How To
Practically Speaking Elizabeth Finchem The Tokyo Experiences
WebWhispers Columnist Debi Austin Adaptability Experiences
New Members Listing Welcome News & Events

 

 

 

 

A Few New Items

 

Memoriam

 

When one of our laryngectomee or patient members passes away, we list them on our Memorial Page with name, city and state, listed under year and then month. It is a pleasant page for sad occasions when we add our friends to the ones already there.  Pleasant because we have music playing and poetry to read. No green grass, trees and headstones to be seen but warm memories are there. Look under About Us from the Home Page to get to the section or link to it here: In Memoriam

 

We also must remove these names from our list email and our roster, unless a request is made by the survivors and the member name is changed to the caregivers name. We have been left in many cases with no contact email to send a word of sympathy to survivors so we decided to add a special page for that. We have opened a new page and you can find information given to us by a survivor with a new email address or we will leave the member address on this page for a while. It’s nice to know that we can write, send an e-card. or let them know that we, too, miss their loved one. This new page is under the Members Area: Memorial Contacts

 

Library

 

We are working to make a few changes and additions to our Library. Tammy Wigginton, SLP and Library Advisor, and Vicki Eorio, laryngectomee member and health care specialist, have begun research on a project that will be ready to start putting on the web site shortly. It is relating to health care and coverage. 

 

It will be under Common Concerns and we have decided to separate the categories to let each stand somewhat alone, but still together. We will have separate categories for Medicare, Medigap, Medicaid, and other insurances to help you find what you need. This will be an on-going job of adding and changing information. None of the places on the web have it all and we will not either but we will try to cover information that pertains to us and is hard to find anywhere else.

 

We are grateful to Tammy and Vicki for tackling this long and tough job.

 

 

WebWhispers and Friends Cruises

 

The 2008 cruise has just been selected and announced.We have opened a web page with all of the new basic information and place it under Activities, WW Cruises. It is easy to find that from our Home Page. To whet your appetite, we will be sailing April 26, 2008 from Acapulco on the Star Princess up the coast to Seattle, Washington.  It is a re-positioning cruise as they finish their Winter schedule and proceed North for the Summertime cruises.  Since it is a once a year trip, it is a little different from their regular schedule.  In the eight days, there will be four more stops along the way and the prices are terrific. We hope you will decide to join us.

 

My best to all,

 
Pat W Sanders
WebWhispers President
 

 

 

 VoicePoints     [© 2007 Lisa Proper]
Coordinated by Lisa Proper, MS-CCC-SLP, BC-NCD-A, BRS-S ( proper.lisa@mayo.edu )

 

 

BETWEEN SURGERY AND SPEECH?

 

Nancy K. Roberts, RN, BSN
Mayo Clinic, Jacksonville, Florida

 

 

A patient, who has undergone extensive head and neck surgery, resulting in the loss of the larynx and the acquisition of a permanent tracheal stoma, is going to be overwhelmed at some point, in the post-operative period, wondering what happens next. As healthcare professionals, whether we are physicians, nurses, or speech pathologists, we must understand the dilemma of the patient and move swiftly to institute an effective care plan. This should include realistic goals which will address the self-care and life-style changes the patient must learn in order to manage successfully the physical consequences, social issues, and communication.

 

Because each of these areas encompasses a broad and complex field, which will be encountered by the patient, it is our responsibility, as healthcare team members, to make these encounters as manageable and comfortable as possible. We must prioritize realistic, but critical needs, of the individual patient.

 

There are definite physical consequences to identify and master before the patient will be able to manage socially and progress to an accomplished level of communication. The consequences regarding the acquisition of a permanent tracheal stoma are being addressed in this article due to their major and practical aspects which impact upon a successful rehabilitation.
 
As a result of a total laryngectomy procedure, the respiratory system has suffered a permanent drastic change in the re-routing of its inspiratory and expiratory functions, resulting in the creation of an opening in the neck called a stoma. This aspect of the surgery is generally what most patients wish to avoid due to the formidable and lasting changes created in their lifestyle. Therefore, the area of tracheostoma management must be dealt with, positively and effectively, from the beginning, by competent healthcare professionals.

 

Stoma management is key to the success or failure of patient well being. A healthy stoma is an absolute must and comes about by meticulous hygiene, which is the basis for healing and stoma stability. The purpose of this meticulous hygiene is to acquire a stable well epithelialized stoma which not only allows for adequate airway function but also will allow for adequate speech valving by occlusion of the stoma with a thumb or finger.

 

Stoma hygiene is determined in part by the type of stoma created, two of which may be an end-on type or anterior wall type. Most stomas will be the end-on variety and are the most simple to manage. The anterior wall stomas require an increased frequency of hygienic measures due to a longer, secondary intention, healing period. Stoma hygiene begins with cleaning of the stoma device or tracheostomy tube, which traditionally is a metal tube in the initial phase. The metal tube consists of an outer cannula or tube, an inner cannula or tube, and an obturator or guide to assist in tube insertion. The cleaning agents recommended for the stoma device are hydrogen peroxide, liquid dish detergent, and clean tap water. Because this care is taking place in the home environment, sterile water and sterile technique are not required. Hydrogen peroxide is initially used in the cleaning regimen, as it will quickly oxidize the mucus secretions on the tube. Once this is completed the tube is to be cleaned with soap and water and rinsed with water. Two specific brushes, an inside tube brush and a hand brush, are required for cleaning the metal tube. Following brush usage, these brushes must be meticulously cleaned with hydrogen peroxide and water to remove all mucus particles and be allowed to air dry.
 
Stoma hygiene also includes cleaning of the stoma itself. Cleaning agents for the stoma should include a mild soap, clean tap water, and hydrogen peroxide. Dilute the peroxide with water using a 1:1 ratio. The stoma will benefit from a light application of diluted hydrogen peroxide using cotton tipped applicators to gently loosen crusts. This method should be followed by applicators dipped in water to remove loosened debris. Soap and water should be used judiciously to prevent leakage into the trachea causing irritation. Ointments are used sparingly on an individual basis around the stoma. If allergies are not an issue, a double antibiotic ointment is used when stoma sutures are present or there is a sufficient amount of crusting around the stoma.
 
Hygienic measures, even though not using sterile technique, must utilize the utmost clean methods and conditions. A recommended frequency for a thorough cleaning of the stoma device, in an end-on type stoma, is twice daily. This involves removing the entire stoma device (both the inner and outer tubes). However, complete removal of the stoma device for cleaning may be necessary more often if there is an abundance of secretions, if coughing continues after the inner tube is cleaned, or if the patient is uncomfortable. The inner tube should be cleaned as many times as necessary to keep it secretion free for unobstructed breathing. Basic attachments to the outer tube include straps or ties, which hold the stoma device in place, and a gauze pad worn under/around the tube to manage secretions which are now coming through the stoma to the outside. The straps or ties, which attach to the faceplate of the stoma device or tube through special openings, should be changed twice daily as they will usually be soiled. The gauze pad will need to be changed when it becomes wet from secretions being coughed through the tracheal stoma to the outside. Times will vary according to the individual patient. A routine must be incorporated into the patient’s activities of daily living, which is a considerable adjustment in the beginning for all patients.

The stoma device is worn primarily during the healing period for the stoma to prevent an abnormally small closing and to allow for a therapeutic size opening. For an end-on stoma without complications, the healing period usually encompasses the initial three months following surgery, and the “weaning process” begins during that time. The first step in the weaning process allows the patient to remove the entire device for one hour beyond cleaning time. This can occur as early as one month post surgery with physician approval. If the device is easily replaced at that time, one hour increments may be added daily until the device is left out during the entire day. After two weeks have passed leaving the device out for the entire day without any noticeable change in stoma size, the device may then be left out over night. The stoma size may be checked at anytime by simply reinserting the device. If the stoma shows signs of shrinking or constricting, the length of time, that the device is being left out, should be shortened. The stoma size can be enlarged again by wearing the device for several hours over the period of a few days. Some patients find that they cannot go without the device entirely and need to wear it for a period of time during 24 hours. These patients usually choose the wearing period most convenient for them. For example, some choose to wear their tube while sleeping, but leave it out during the day. As the stoma stabilizes, the patient’s options for stoma devices increases.

Stoma devices play an on-going and prominent role in effective stoma management. A variety of devices are available. The healthcare professional should be aware of the devices and specific selection criteria in order to make a wise choice for the patient. Our first choice for a stoma device in a newly created or an unstable (not healed) stoma is the Mayo Clinic stainless steel tracheostomy/ laryngectomy tube. The strong points of a stainless laryngectomy tube include that it is able to be thoroughly and easily cleaned; able to withstand rigorous sanitizing regimens required in meticulous stoma hygiene to control bacteria; has a comfortable fit; is not degraded by fungal or bacterial invasion and they are cannot be damaged by petroleum based ointments or cleaning agents.

Stoma devices used in our practice also include silicone vents and tubes. These are not recommended for the newly created or unstable stomas because of their susceptibility to fungal colonization and general material degradation, which may compromise the already vulnerable stoma. However, when the stoma has healed and epithelialization is complete, silicone stoma devices such as tracheostoma vents are an excellent choice, both aesthetically and for voice enhancement.

 

However, a word of caution should be mentioned when using the self-retaining products: It is recommended that the device be removed from the stoma for approximately 8 hours in a 24 hour period. The self-retaining flange has been known to create formidable tracheal ulcerations from constant pressure exertion. Cleaning of all of these devices are similar to those previously described, hydrogen peroxide is the mainstay for general cleaning purposes. However, always consult the manufacturers’ inserts for specific cleaning recommendations.

 

Following extensive head and neck surgical procedures, the patient’s life is fraught with many changes, which are often viewed as being unpleasant and annoying. This is actually a very astute assessment. Therefore, as mentioned earlier, a competent healthcare professional must take charge in a positive, effective manner from the beginning. This should avert the dissemination of inappropriate information and focus on what is needed before negativism and depression gain control.

 

Because of time and space limitations, the last life-style change I have chosen to discuss, because of its possible life threatening consequences, is respiratory secretion management and humidification of the trachea. It is imperative this information be delivered to the patient correctly and from the onset. In conjunction with stoma wound healing, adequate humidification of the trachea is the other issue of prime importance in the realm of physiological consequences, which must be understood and dealt with in the rehabilitation effort. Following surgical alteration of the respiratory pathways and creation of the tracheal stoma, inspired air is bypassing the nose and entering directly into the tracheostoma, where it is deprived of the natural air conditioning benefits of the upper respiratory passageways including the sinuses and turbinates. The respiratory tree is lined with mucus-secreting ciliated epithelium. For the cilia to produce wavelike, beating motions, which propel the mucus forward from the lungs towards the stoma, humidification is required. In other words, the cilia must be wet to work effectively in expelling mucus debris from the tracheal stoma.

 

The new tracheal stoma which is a wound until becoming stable (epithelialized), accompanied by the physical irritation of the stoma device or tube as well as the dryness and impurity of inspired air, all contribute to increased mucus production and viscosity. Uncleared viscous mucus in the trachea becomes a threat to the patency of the airway, particularly in the early post-operative period and can extend to weeks and months. Removal and cleaning of the inner cannula of the stoma device or tracheostomy tube is only one way of dealing with airway patency.
External humidification measures, which attempt to imitate the physiological functions of the nose, include warming, moistening, and filtering of the air inspired through the stoma and are necessary intervention strategies for improved stoma humidification. Without intervention, tracheal dryness will soon become apparent and can occasionally become life threatening. Significant symptoms of insufficient humidity include an increase in unproductive coughing, increase in viscosity of secretions from thin to glue-like, color change from clear to pale yellow, shortness of breath from a mucus plug obstruction, blood-streaked mucus, expelled or retained mucus crusts/plugs, and noisy dyspnea (shortness of breath). General, but effective methods of external humidification include humidifiers and vaporizers; saline instillations; showers; and stoma covers. More specific methods include filters which attach to tracheostomy tubes and speech devices. For purposes here, the general methods of external humidification only will be addressed.

 

Humidifiers/vaporizers: These items may be needed in the home. A humidifier will cover more area than a vaporizer and may be used in conjunction with an air-conditioner for comfort. A vaporizer will do well for a single room where the patient is residing. Outside windows should be closed as well as the room door for optimum effect, depending on the desired degree of humidity. A cold air vaporizer is recommended. Areas and climates of the country must also be considered.

 

Saline instillations: Twist-top vials, commonly in 3 and 5mL sizes, are available in a box of 100 with a prescription. These are also very convenient and safe for travel as well as in the home. The vials are instilled directly into the trachea when the top has been removed, by extending the neck, and taking an inspiratory breath prior to usage. It is almost impossible to overdose with these vials and they are well recommended. Saline instillations using a MAD syringe for a misting effect is also appreciated by many patients.

Showers: These are great for anytime humidification purposes, but are particularly effective in a crisis involving a mucus plug or other obstructive debris when quick loosening and removal are the goals. The bathroom door should be closed, not locked. Getting into the shower is not necessary. Sitting and leaning forward, in the bathroom with a sauna like atmosphere for concentrated humidity and assisted by saline instillations is usually the most effective method. Caution: the concentrated humidity and the warmth may cause lightheadedness. It is best to have assistance present.

 

Stoma covers: These have a variety of purposes; however, only humidification measures will be recognized. There are many fabrics available, but the foam materials are the most highly recommended. They should be utilized, particularly when traveling with air conditioning as this is a very drying environment.

 

One question frequently asked is how often are saline instillations used and when are other methods utilized? Unless someone has a crystal ball, it is not possible to determine in advance “how and when”. However, there is a determining factor which can be followed and it is this: What is the consistency of one’s secretions? Ideally, the tracheal secretions are clear and thin, and they can be easily cleared through the stoma with a normal cough. Secretions that are noted as opaque and discolored and/or thick and sticky suggest symptoms of progressive dryness which are very likely to result in airway compromise or obstruction. If humidification measures are already being utilized, they need to be escalated, using a combination of the previously suggested methods.

 

Additionally, one must assure that the patient’s fluid intake is adequate. Caffeinated drinks such as tea and coffee as well as alcoholic drinks have a diuretic effect. Caffeinated beverages may be enjoyed, but in conjunction with other non-diuretic fluids such as juices, water, etc. An additional measure is to determine if the patient is utilizing any actual diuretic acting medications

 

In summary, there are many facets of life and daily living activities which will be permanently affected by extensive head and neck surgery, likely, too numerous to mention. To reach the goal of enjoying life again, and adjusting with a measure of comfort to the changes which have taken place, an attempt has been made to succinctly mention the most critical physical consequences which should be mastered in order to reach these goals. They hold the key to therapeutic surgical wound healing, maintaining a healthy surgically-altered airway. and are the foundation to rehabilitative efforts, affording an acceptable quality of life.
 

 

 

 

 

Let Me Tell You How I Got Here...

Part 2

Bruce "Buck" Martin

 

 

Growing up in Northwestern Pennsylvania, I was not accustomed to the power and fury of tornadoes. I remember reading about them, and hearing people talk about them, but I had never seen one. Wind, rain, thunder, lightening, blinding snow - I had seen all of those in my childhood and knew that one could expect to face many kinds of storms in life.
 
In 1967 I graduated from high school, spent the summer goofing off and, in September, enlisted in the Navy. For almost the next forty years, as my life and work took me far and wide, I experienced many kinds of storms: dust storms in the deserts of Morocco and India, monsoon rains in South Asia, high seas onboard ship in the Navy, and blinding blizzards here in the U.S.A. But, in all those years, I still never witnessed anything close to a tornado. With one exception, I have never been particularly frightened by bad weather or storms. But, I have always been and still am pretty frightened by high winds. I guess it must be, in my mind, that wind reaches a point where it is so strong that one has no control whatsoever when placed in its presence. If it grabs you, you are at its mercy. That is what Nov. 13th, 2006 felt like to me. A force so powerful that I had no control had just grabbed me, and now I was at its mercy. "Buck, you have cancer", the doctor said.
 
Wind storms had always frightened me, and over the years I had been in many other situations that made me fearful. Like the time I did three or four 360 degree spins on the ice and then rolled my VW bug over onto its roof in a ditch in the middle of a snow storm. I was fearful then. Or the time in New Orleans when two drug addicts broke into my truck in the middle of the night, and I held a pistol to their heads while they reloaded my cargo. That scared me.
 
In 1993, as I lay in my tent on a sand dune in Mogadishu, Somalia during "Operation Restore Hope" and the mortars started landing outside my tent, I was fearful as I jumped out of bed, grabbed my flack jacket and my helmet, and dashed for the underground bunker. I was fearful as I sat there for the next several hours, listening to the "thump, thump, thump of mortars landing above us. In 2000, when I lay in a hospital bed in Bakersfield, CA near death from a ruptured appendix, and in the middle of the night they had to come and resuscitate me, I was scared. In 2001, when my wife was lying on the operating table having three vertebrae in her cervical spine fused, I was fearful. But never in my life have I been as scared as I was after I heard the doctor say, "Buck, you have cancer."


Many people reading this may be thinking, "Been there, done that, have the T-shirt" You are preaching to the choir, Buck. For everyone reading this, who has heard the doctor say those words, you are right. You know exactly how I felt, and anyone who has not heard those words cannot begin to imagine the fear it instills.


They say a tornado will suck the wind right out of your lungs if you are caught up in one. "You have cancer", kinda does the same thing. It takes your breath away. It spins you topsy, turvy. It makes your mind go numb.
 
I can't remember any details from that day. I don't remember if my wife was with me in the doctor's office. I don't remember leaving his office. I can't remember where I went, or how I got home. It's as if the next days are a blur. It was like driving in a "pea-soup" fog and straining with everything you have to keep moving forward. The details of day-to-day routine are lost. They just don't matter. In the ensuing days a variety of emotions consume me. I imagine the young Amish man felt some of the same emotions as he was sucked out of his shoes and lifted into the sky by a force he could not control. Fear, confusion, and helplessness come immediately to mind, but strangely I don't remember any feelings of anger. I don't remember how long that tornado had me spinning out of control, but at some point it spit me out onto the hard, cold road of reality.
 
I'm back on the ground now, and it is time to shift gears. Recent discussions on WebWhispers prove to be very timely as I write this, because when I hit the ground the next question for me was, "What do I do now?" Or another way of expressing it would be, "Who is going to tell me what to do now?" Where do I go to find the information necessary to make the correct decisions about the treatment of my cancer? Where do I start? The ENT who diagnosed my cancer and performed the biopsy said, "Well you will need radiation treatments and you will end up with a little dry mouth." So that was the starting point and only one opinion in a journey that would take a month, involve numerous consultations, several changes of direction, and a whole lot of stress, anxiety, and confusion.
 
I told my ENT that I would like a second opinion and he referred me to an ENT specialist at a large university cancer center in Ohio about 3 hours from my home. I went there, saw the ENT, and he gave me a different version of my situation. He said that my cancer appeared to be considerably more advanced than my primary ENT had suggested. He said that his recommendation was a total laryngectomy. No attempt whatsoever was made at this cancer center to have me be evaluated by a "team" of physicians. By this I mean medical oncology, radiation oncology, ENT, or others, to come up with a comprehensive team decision as to the best treatment plan for me. I left there feeling confused and disappointed. When I got home we called to make appointments but first we could only was with the medical oncologist, two weeks later, followed another week later by an appointment with the radiation oncologist. Needless to say the total lack of a team approach was not much of a confidence builder for me.
 
In parallel to these appointments, I had scheduled appointments with a local radiation oncologist, and a local medical oncologist to begin radiation and chemo treatments for my cancer. I had gone so far as to have a PET scan, the simulations, tattoos, and had a radiation mask made for my treatments. I was to begin the treatments in a few days.

For a third option, I was still trying to get into a major university cancer center in my home state of WV to be evaluated. On November 30th I was successful in getting appointments with medical oncology and radiation oncology departments at the Mary Babb Randolph Cancer Center at West Virginia University.
 
I met with the doctors in both departments and spent a great deal of time going over my case as a team. They called the ENT department and scheduled my appointment the next morning for an evaluation by the ENT surgeon. All the while, the three departments were talking to each other and working as a team to provide me with the best possible information concerning my cancer and recommended treatment options. On December 1st, after having spent the entire previous day in consultations, and having spent nearly two hours with the ENT surgeon and his staff, I was finally at a decision point.
 
I asked the doctor if I could just stay in the exam room with my wife and talk things over for awhile. He said stay as long as you need. My wife and I talked for probably an hour. We both were very confident that we had finally been given all the pertinent and relevant information that we needed to make an informed treatment decision. We understood that each of the disciplines involved in this process have their own biases. The medical oncologist believes in chemotherapy, the radiation oncologist advocates for radiation, and the ENT surgeon firmly believes that surgery is the best treatment approach but, in the end, the decision was mine to make. No one else was going to make it for me. And I would not want it any other way. As someone said recently in a posting on WebWhispers, "I am the captain of my medical team."
 
So, on that December morning, after reviewing all of the evidence with the experts, and spending a long time going thru my "decision logic-loop" with my dear wife Diane, I reached a point where I was convinced of my logic, was firm in my belief that I was not being irrational or impulsive, and I made my decision. I called the ENT doctor back into the room and told him that my decision was to forego the chemo and radiation treatments and to have the total laryngectomy surgery as my primary treatment option. He asked me if I was sure of my decision, or if I would prefer to take more time to think about it. I told him no, I was certain in my decision. He reassured me that it was my decision to make and that I had the option to change my mind.
 
I left the office totally exhausted, both physically and emotionally, but with a great sense of relief and the feeling of a huge load having been lifted from my shoulders. I called the local radiation and chemo clinic and told them to halt the presses because I had changed my mind.
 
I thought it would be easy from that point on, but, boy, was I mistaken......
 
....to be continued next month.......

 

 

 

 

 

 

National Self-Flagellation Day

 
 
I caught the look just in time. It was about the end of Mother's Day, last weekend, which falls on March 18 in Britain. I was holding forth, (a habit I have abandoned since yesterday), to my captive audience ,when my ego was shattered to its fragile core.

Unmistakably I intercepted a look of unmasked boredom pass between my children. They had that glazed look. I knew that my twittering was the cause. It was a chastening moment.

It had been a happy family occasion. My son's sitting room was taken over with baskets of flowers, chocolate-scented candles, silly schmalzy cards thanking the dear Lord for such a great Mummy. Tongues firmly in cheeks as they call me that only once a year despite my wailings that 'mother' is so cold. Behave yourself ,mother, they say, proving I'm right.

The special meal had been thoughtfully prepared so that I could enjoy and swallow without spilling on my pale linen suit. Or their pale mushroom carpet, come to think of it, as the new selfless me will do in future.
We had gone through boxes of photographs, where ones with my grandchildren sitting, grinning, yes grinning how-dare-they, with grandpa's trophy wife, had been vanished to avoid my sad little sighs. One had slipped through the censor. Yes, darling. She was grandpa's secretary, and very good at her job too. Yes, she has lovely hair hasn't she. Grandpa always preferred mine long.

Suddenly I felt tired. Or rather I remembered that I was dying to watch the original Jane Eyre I had taped wth Orson Welles as Mr Rochester. The first time I'd ever had 'that' feeling about a man, I remember.. Yes ,I had vaguely said to granddaughter Sophie that I would help with her French homework but she would probably have forgotten by now. Better to learn from her own mistakes anyway.

I jumped up, rubbed my eyes, said my thank yous and hugged everybody and asked to be excused as I had 'such a busy day tomorrow'. Son, Magnus, casually asked exactly what I was going to be busy with, as I'd mentioned the homework. Just curious, mother.

Why wouldn't the battery run out NOW. But I took a deep breath and said, well, as he'd asked, the council men were coming to remove all the stuff from the bottom of the garden and I would have to stand guard in case they took away my old statues thinking they were junk. They couldn't give a time and I would have to stay in all day in case I missed them, and the water men were coming to install a new meter and they would all probably arrive at the same time and they would all want tea and coffee with different sugars and milks.....

Which was when I intercepted the look.

I had instant playback of the rubbish I had been spouting. I imagined the feigned interest I’d have shown if anyone else had been rabbitting on like that. Praying for them to stop. To go home.

Which is what I did, feeling hot and deflated and furious with my shallow self. I didn't deserve Mr Rochester like that perfect Jane. I sat down on the couch and decided it was time for a good old spiritual evaluation. Lent and Ramadan and Passover and National Self-Flagellation Day were all happening now. Oh well, I invented the 'hair shirt' one. But what better time to take stock. To be able to respect myself if I wanted others to.

Was I becoming one of these people who doesn't pat your hand but expects you to feel their guts? Had the years of being worried about, and cried over, and planned for, and finally welcomed with huge compassion and patience to my new kind of normality, turned me into that awful Walt Whitman person who doted on himself because he was 'all so luscious.'

The hell they had. Tomorrow, that's today, would be the first day of the rest of my life. I would give and not take. I would ask Sophie round for doughnuts and French conversation. And I would never ever talk about things I wouldn't be interested in hearing from somebody else.

The trouble is, I love listening to the minutiae of people's lives, apart from rubbish collection maybe. But then other people are not all so luscious as me.....

 

 

 

 

 

April!

 
 
Oh my goodness! Today I went to the wood pile to prepare for the ceremonial Sunday AM fire to be lit while we watch Sunday Morning on TV. I could not believe it! That bare, ugly, tree across the street, just overnight, decided to produce beautiful blossoms. I stood there in wonderment.

 

We are blessed to have several trees and brushes in our yard. After four years here, I still don't know the names of them but thank heavens they have been here for years and take care of themselves. Anything I might do would surely upset them so I leave them to nature but repay them by talking to them and appreciating them. So, true to form, they are starting to bud.

 

There are several different colors of buds in several stages of blooming. I stood outside, looking around as if this vision was a Panorama. A little seedling there, probably from the acorns dropping last year, ivy tumbling over the retaining wall, that scrubby looking bush that now seems to have some character, daffodils that I never planted are all over the place, just fighting for space, and the birds. Ah, the birds!

 

The sounds from them are loud and sweet and cover every octave of birdsong. I hear a woodpecker but can't see him. Time to add to the grocery list - bird seed. Have to clean out those bird feeders. But that is all I have to do to welcome Spring. It is best not to interfere and just enjoy.
 
Cool weather will return occasionally. I might have a few Sunday AM fires left before we cover up the wood pile for the year. The fires will be replaced by roses from the rose bush in the front yard and cuttings from the flowers that were planted before my time here. Open windows, warm breezes, cats sitting in the sun on window sills, my beloved dog Annie spending hours sniffing and rolling in the yard, birds and more birdsongs, squirrels running up and down the trees, all things to look forward to.
 
And ALLERGIES! After all, we are in Georgia. (just in case you thought I was going off the deep end with all of this spring thing).

 

I maybe a little more aware of my surroundings now because it is the anniversary month of my surgery that saved my life but also changed it forever. Can't smell, don't talk in a traditional voice, but thank heavens I can see and hear spring. And my precious train whistle now says, "Whoo! Whoo! Sprinnnnggg!"
 

 

 

 

 

[Last month’s article discussed and defined the power and capabilities of The Human Computer – that thing that sits between your ears. From here on, you might want to review that article if any of this isn’t making sense or working for you. But, for now, we are going to start learning techniques to help you better deal with life’s daily issues and realities – and we will be using our Human Computer to assist in these processes.]



Mirror, Mirror…


By: Lanny Keithley
 
 

One of the biggest problems that many people have is not trusting themselves or feeling unsure if they are doing the right thing in any given situation. This may end up with them spending vast amounts of time and resources, mental and material, trying to ‘sell’ themselves or others on a reality that doesn’t exist, ultimately resulting in deepening a person’s negative self image. 
 

To help dramatize and discuss this concept, I am going to use one of the most widely known, joked about, and ridiculous examples of this concept I can think of. “Honey, does this make my butt look too big?”…
 

My wife, who is my first line editor, said that there is a whole "other" aspect to asking that question that involves a completely different set of logic – something about a focus of attention and admiration – which I can firmly agree with but, in this article, I am just going to focus on the standard usage that is so ‘widely’ known. So, I Googled our question and came up with 1,170,000 hits in 0.16 seconds. If you had studied this before and already had that information, stored from your past, your mental computer could have done it faster.
 

Taking the ‘typical’ situation where this question is used, a woman asking her man the question, with each knowing the right answer before it is given. Both know it is total BS from the start but a few thousand variations of the same ‘question’ are asked every day, somewhere… Let’s look at what is really going on here… The ‘man’ in this case is just the ‘tail of this dog’ and is only trying to ‘wiggle free’ with all attached body parts. The ‘woman’ is trying to rationalize, against all her logic and reality are telling her, that she is something she is not. From my experiences, the scene sort of goes like this…

 
She has a special place to go and some clothing that she would like to wear, but it is too tight for her ‘current’ body. Right there, she already knew the reality of the situation when she first asked herself if she should wear that or not. But, didn’t like the answer that came back and the game begins…
 

She will try to rationalize why that answer isn’t ‘completely’ right. She might think about how it might look on a friend of equal size and, if it’s good for them, why not herself; or if she didn’t eat all day, it would fit; or its cold out and she would be wearing a coat most of the time anyway;....or…or… This process would build more and more frustration and self doubt. Then, when she has been 'almost' able to con herself into believing she would look and feel good wearing it, but still knows it isn’t right, she decides that she needs a second opinion and asks the 'Question’ to her partner.
 

There are two basic results – either the partner’s answer was truthful or not. In either case, she now has a larger problem, as she has involved another person, knows she has not trusted her instincts, has had to deal with all of the image problems she has and feels like crap for doing all this to herself – again… And, if that were not bad enough, still has to decide what to wear so, basically, she’s back to square one.
 

She has just spent a small part of her life causing herself, and her partner, frustration, developed negative images and data in her computer that she will have to resolve or deal with from now on, and lost time that she could have used for something positive and good. All caused from not trusting her instincts and good sense. As we all know, life is precious, and spending it doing negative things is not good sense or logic.
 

After letting such things ‘happen’ to you for a long time, it is sometimes hard to identify what is real truth and logic, and what is being created by our thoughts and wants has ‘happened’ in this example.
 

So, how do we stop this type of event from ‘happening’ to us, and what is with the title of this article – ‘Mirror, Mirror’?

 
We have probably all seen the Fairy Tale saying “Mirror, Mirror on the Wall – Who is the Fairest of them All?” – Where the mirror would tell them the truth and answer all their questions. Well, we can use that same tool to help us answer any question we have. And, as described in The Human Computer, the answers from your computer will always be accurate and truthful - and will be based upon every aspect, of every related event, in our total life experiences to date.

Using this over time, you will learn to trust your computer. Until then, there are a couple of rules we have to follow about how we use it, so we keep our consciousness from ‘helping out’ and analyzing it all for us – which is what gets us into all these problems, in the first place…
 

First, you must want to avoid the path of stuff ‘happening’ to you and take charge of getting stuff done correctly and honestly. You just need to want to get the truthful, answer to some question you have, within yourself, without any BS.
 

Then, you must ask your question so that it only has two possible answers - a yes/no, or either/or, type of answer. Forming questions in this way keeps your analytical thought processes out of the picture and is only accessing your computer… “Is red my favorite color?” is a good question – the answer is either ‘yes’ or ‘no’. “What is my favorite color?” is not – that type of question will fire up all your thought processes and you are gone…down another road.
 

If the issue is complex, involving a number of questions, or levels of consideration, start with the most basic ones first. After you have your answers to them, note the answers and based upon that data, form and ask the next level of questions. If you let yourself start analyzing the whole thing, you are right back to stuff ‘happening’ to you again. By breaking down a complex situation, you can reduce a large problem in a series of little steps, or questions, and not get totally confused by trying to ponder the whole thing at one time.
 

When you ask yourself the question, you should get back one of the two possible answers. If not, your question is not being formed or asked correctly, or you are allowing your thought processes to run. If your question is formed properly and you are still having ANY trouble getting back one of the two possible answers to the question, it’s time to get out the big gun – The Magic Mirror. Go to any mirror that you can see your eyes in, look yourself directly into your eyes, and ask the question again. You will know the right answer. You cannot lie to yourself. Your eyes are the view into your being, and you will know the right answer. You may not like it, but you will know it.
 

Based upon all of your total life experience to that moment, you now have the right answer to your question. You can use that answer to do the right thing for you without any guilt or remorse. There is no need for second guessing or worrying about the results – they are 100% accurate for you. It may not be the most popular path to take, but it is the only one right for you.
 

Life is full of opportunity to feel bad and doubt one’s self, but this should not be one of them. The ‘future’ will always provide new answers and information, that may alter perception of the accuracy of the 'past' - keep in mind the old term that “Hindsight is always 20/20”. Using and trusting your God given resources, you can accept full ownership for making the only correct decision possible – given all the data available at that time. This is the best that anybody can strive for.
 

The key message, here, is – Your own personal Human Computer is an extraordinary device that has much more analytical capability than your thought processes or consciousness will ever have. It is your own powerful and unique tool, created for your use only. Use it and trust its answers in making your decisions in life. It will never let you down, and, when trusted, gives you freedom from guilt and concern. I sincerely hope you all think about it. Your feeling of being free in life may depend upon it.
 
 

 

 


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

 

 

 
Donna has been struggling with an undependable computer...she had other words for it, more descriptive, but I didn't think I could use them here! However, a new one is on the way and she will soon be set up and back with her column next month.
 

 

 

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

 

 

 

The Tokyo

 

 

Practically Speaking, my column heading, has been the title of my articles and presentations for a long time. It has a dual meaning; referring to my voice without a larynx, as in, “I am practically speaking”, and practical topics regarding laryngectomee rehabilitation.

A very practical matter for us to consider is affordable speaking devices for laryngectomees who need them, regardless of where they reside. The pneumatic device called a “Tokyo” has been mentioned on WW several times recently. As I read all the inquiries I thought an article on it would be a natural progression following my previous topics; EL, ES, and portable communication keyboards. The December 2002 edition of Whispers on the Web has information and photographs of an array of pneumatic devices that may help you visualize what they look like.

My personal contact with the Tokyo started when I traveled to Indianapolis to meet with Dr. Jim Shanks, PhD, for a speech evaluation six months post op. Since I was having a problem with esophageal speech following radiation he loaned me a Tokyo to take back to my hotel room and try out on my own. I did. It worked. Vanity set in. I had my sights set on covering my stoma with over-the-counter jewelry, and speaking esophageally. It was nice to know that a device like this was available, but I passed on the opportunity. It wasn’t my cup of tea.

The next time I saw a pneumatic device that was similar I was attending the IAL Annual Meeting in Bellevue, WA, in 1988. There was a vendor from Taiwan there with a white plastic version for $50.00. I bought one so I could demonstrate how the pneumatic worked compared to the electro larynx to my students. I still have it, and sing “Happy Birthday” with it as part of my arsenal of equipment for demonstrations. The fact that these devices are inexpensive, and require little maintenance, or training makes them ideal in a number of situations. Whether used as a primary method or as a secondary/back-up , the pneumatic is worth knowing about.

As I thought about two men I know who use the Tokyo as their primary means of speech; Sid Young, Santa Ana, CA, and Graham Latemore, Winfield, Queensland, Australia, I decided to invite them to share with us how they came to choose this method as their own.

 


Here is what Sid had to say about it…

“Often times when someone is asked the question, "why they chose a particular speech method" they may respond by giving some of the requirements they were looking for in a speech method.
For instance, they may say, "I wanted to speak right away" or "I wanted to be hands free" or "I didn't want to have any more surgery". There are other good reasons also, but when they find a method that they are able to use effectively and that meets their requirements, they choose that method.
As for myself, when I was asked this question, I discovered that I didn't really choose my method, but more accurately put, "it chose me".

I had never heard of, nor did I know anything about, the method that I've come to use until I stumbled upon it while reading through our "blue book". I looked at the picture of it and thought, "that's a strange looking device". I read the ad and thought, "sounds interesting". Still not knowing what the heck it was, I sent for one out of sheer curiosity. When it arrived , I opened the package, looked at all the pieces and thought, "this will never happen". It came with a video; I played it and followed the instructions. Finally I was ready to test it. When I made my first sound with my new instrument, I was amazed!

I tweaked and played with it for the next two days. I still had no idea that I had been chosen and that this would be my main method of speech for the next twelve years. The thing I liked most about the device was the sound. It was very close to my natural voice. I soon was able to use it very effectively and as they say, "the rest is history".

The speech device that I use is the "Tokyo Pneumatic Device". I understand that it may not be for everyone, but for me, the Tokyo and I have worked very well together over the years.

Sincerely, Sid Young”

(Note: Sid had a TEP that developed a problem, knows how to use an EL, and uses ES when his hands are full.)

 


Graham Latemore wrote this about his experience…

“My experience started when I woke up in ICU in the RWBH (Royal Brisbane & Women’s Hospital), Brisbane, Australia, on 19-2-2006. The next day when I looked in the mirror and saw the 33 staples, which I was certain was all that was holding my head on, I realized that my world had changed forever, and that I was looking at the only person that could help me survive my fate.

And survive I have, so far. 10 days after that dreadful awakening I was shown the door and with the most basic idea of hygiene and sterility and good Lary practice, I left for my home 565 kms north. Tucked securely under my arm was my little board and Crayons, all that stood between me and no communication. The speech people said that they would send me a Servox, and so they did, but the batteries were buggered. So two weeks later, after all sorts of threats, I received a set of batteries and charger. And one day after that I got the first “Buzz”, but no words, because my old radiated throat was like a board and a bullet would not have gone through it.
 
Oh well I said, it only cost what it is worth- “zero”. I still had my little board and Crayons. By now I also had got a TTY phone, so I could talk with my boys ok. They could not get used to talking to me, and the relay lady would talk to them. Then one day my youngest son who is in the Australian Navy forgot himself and used the “F” word, it was then that I made up my mind to do something constructive about communication.

 

I turned to man’s best friend on the Internet, Goggle. I “Goggled” away for hours, until a device that used no batteries, did not require any more holes in my body, and had no learning curve to speak of, and cost $200.00 US incl. postage, caught my eye. That was when t I met my best friend in the world, my “Tokyo”. I ordered it that day and when it had arrived by post, I opened the parcel with trembling hands. I was sitting in my kitchen, and my Dingo Kelpie dog was at the door. I put the device into my mouth and the bell over my stoma and said, “Come here, Mate”. Ding got up and walked to me and licked my hand. I cried for a long time just sitting there alone with my dog.
 
That was almost a year ago; time flies when life is fun. My surgeon has offered to do a puncture for me, but at the same time he says, “you don’t need it, Mate, it would be just one more complication that you can live without”. Soon I will I will start to learn ES again. I have to have an operation for AAA (abdominal aortic aneurysm) in about a month. I will wait until after that; one day at a time.

 

Cheers, Graham Latemore”

 

 

Since we have heard several versions of how the Tokyo was developed and got its name, I asked Clyde (Seede) Welsh to tell us about it…

 

“Well, I have heard a lot of different, and in fact heard one last Sunday from Lordina, who heard it from Web Whisperers.

The truth is that a man by the name of Al St. Germain (U.S. Navy) was the inventor of the basic unit. The basic unit was more of a shotgun shell with a piece of rubber inserted in it. Al was a ship radar officer and was laryngectomized while he was in service. He continued for some time in the service and while he was on ship during a New Year’s party he noted a lot of party whistles laying about and the idea struck him for a pneumatic speech device. He went down to the medical officer and got some old tubing and reversed the whistle into a very crude device which worked after a fashion. The ship was making runs to Japan, and on one of the runs, Al took his idea to the Japanese equivalent to our cancer society and there he worked with a
Christian doctor (I believe his name was Yamamoto). They came up with a working model (looked like a shotgun shell). From there it gradually took shape into what you see today.

Al retired from developing the aid any further and gave the promotion of the aid to Red Woodward of Texas. Red was a saxophone player in the big bands, and was laryngectomized sometime in the 70's. I met Red through a voice club in Omaha Neb. and Red introduced me to Al St. Germain. We all became good friends down through the years and all three of us had mastered the Tokyo.

 

Meanwhile I kept my job as a ink matching specialist in the printing field and worked on the Tokyo in my spare time. Red passed away in the late 80's and left me the Tokyo with Al's blessing. Then Al passed away in the mid 90's. I had bought a small lathe and taps and dies etc and started to hone in on some ideas that I had.
 
I had an idea on the inside of the Tokyo and finally developed the insert of the Tokyo. The insert is the tube which runs up through the center of the stem of the aid. It has a diagonal cut to allow subdued vibration of the silicone rubber diaphragm. With out that insert you had to butterfly the rubber to get good phonation and that took a lot of work on the part of the laryngectomee. With the insert we could then use the rubber straight across the dish without the butterfly. That made the Tokyo into what you see today. Now down through the years the patent has become void on Al's Tokyo and I see where there are several Japanese out there who are selling a copy of the original. Al and Red made a 35 mm film back in the early 70's with a radio station out of Ft. Worth Texas which introduced the Tokyo. Mark still has the film. I made a video of that film and I believe Mark has that also. Any way that is a short rundown on the Tokyo as it is today.

Friend Seede”

 

 

In closing I hope you will agree that it has been fun to read these reports in their own words, and join me in thanking them for taking the time to write about their experience for us. It doesn’t get any more practical than that, does it?
 
Elizabeth Finchem
 

 

   WebWhispers Columnist
                                                                                  
Contribution from a Member
 

 

Adaptability

 
 
The term "adaptability" is not only a reference to our ability to adapt but more so our willingness to adapt.

 

Since I started this adventure, I cannot tell you how many times I have heard, "Oh, I could never do that!" or "My life would not be worth living."  And my all time favorite, "You are so strong."  As rude as I am, I have smiled and walked away.  The option sucked to say the least.  The sound of my voice certainly is not why I was living, and survival is not necessarily an option but more a learned condition.  You do what you have to do.
 
I wish I could remember who told me to start over and connect with my inner child.  At one time I had read almost every self-help book trying to be "normal", so I was use to the inner child thing. I didn't need to connect; I needed to "see" like a child.  They don't see with all the attitudes, opinions, and plain crap that we allow ourselves to be blinded by through the years.
 
I could adapt my job to fit my situation; I had prepared everyone for the change ahead of time. A fax machine, a computer, and a great secretary made my work life very easy.  My family was pretty cool, but most of the people I thought were friends thought they could catch it or panicked when I coughed so they were soon gone.  The ones that stuck with me are an amazing group.
 
Support meetings were a high light of my month.  It is difficult to feel sorry for yourself when you see people just like you that are laughing and living and writing their own history.  I was lucky to have Elizabeth Finchem.  She came to a meeting with a sign-up sheet for a public speaking class.  I thought she was already a pretty great speaker; then I discovered it was for me.  Crazy people are highly under appreciated in this world, but thank goodness not in our community.  I signed up and showed up at class with my CoopeRand.  The instructor looked at me, grinned, and put me in the front of the class.  I learned more about myself in the 6-week course than I imagined.

 

I am not normal, I am never going to be normal by the so called standards, but the really great thing is, "Frankly, my dear, I just don't give a damn."  I never met the people that sat up the so called "normal" thing so who decided they were normal?  I have met some really great people that have survived adversity, that had adapted well.  Funny they don't talk about normal; they talk about life, living and adventure.  They dance, sing, teach, and choose the wild ride through this world.

 

Adaptability is a state of mind not a state of being.  Don't look back; it isn't there anymore!  Look forward, the adventure begins.

 

Debi Austin
"Let your life speak!"
 

 

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 our website and from discussions held by our members on the email lists. We would also like you to visit our forum for less formal disussions.
 
Pat W Sanders, WW President
 
 
We welcome the 40 new members who joined us during March 2007:
 

 

Juana Adolphs Arango - (Caregiver)
Barranquilla. Atlantico. Colombia

Jamie Allison - (SLP)
Evanston, IL
Cindy Bast
Nashua, IA
     
Susan Bertolini
Poland, OH
Julie Blair - (SLP)
Charleston, SC
Anthony Bogdan
Shamong, NJ
     
Rick Boyer
Enola, PA
Larry Burnett
Athens, OH
Alan Mark Bush
Inverurie, Aberdeenshire, Scotland
     
Victor Cerami
Lynbrook, NY
Roy Crain
Cabot, AR
Lisa Crujido - (SLP)
Prescott, AZ
     
Kristi DeHaan - (SLP)
San Antonio, TX
Grace Duffy - (Caregiver)
Lutz, FL
Michael William Dunn
Mackay, Queensland, AU
     
Marian Dunne - (Caregiver)
Donvale, AU
Barbara Ebersole - (SLP)
Philadelphia, PA
James Edwards
Easley, SC
     
Nancy Fuhre - (Caregiver)
Kingwood, TX
Bernie Hester
Otsego, MN
Allison Geller - (SLP)
Tampa, FL
     
Stephen Gorman - (SLP)
Terrace Park, OH
Tina M. Van Horn - (SLP)
Chouteau, OK
Harold Hoskinson
Cimarron, KS
     
Amy Lebowitz - (SLP)
New York, NY
Karen L. Lee
Pinson, AL
Keith G. Matowitz
San Antonio, TX
     
Allen McMaster
Sterling Heights, MI
Cindy Miller - (Med Prof)
Kennewick, WA
Larry Moody
Taylors, SC
     
Stan Mruk - (Returning Member)
Exeter, PA
Bonnie Noyes - (Caregiver)
Tuscon, AZ
Larry Noyes
Tuscon, AZ
     
Fred E. Pate
Hawesville, KY
Phillip Pomerville - (Caregiver)
South Royalton, VT
Richard C. Robra
Blanco, NM
     
William T. Ruane
Callahan, FL
Robert Skwarecki - (SLP)
California, PA
Jennifer Speer - (SLP)
Arlington, VA
     
Cathy Zavala - (Caregiver)
Oceanside, CA
   

 

WebWhispers is an Internet based support group. Please check our home page for information about the WebWhispers group, our email lists, membership, or officers.
For newsletter questions, comments or contributions, please write to editor@webwhispers.org
           Managing Editor - Pat Wertz Sanders
           Editor - Donna McGary
 

 

 

Disclaimer:
 
The information offered via WebWhispers 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.
 
  © 2007 WebWhispers
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