February 2009

 


 

 

Name Of Column Author Title Article Type
News Views Pat Sanders We Are All Different News & Events
Voice Points Lisa Proper Nutrition - End Of Life Education-Med
WebWhispers Columnist Mike Burton From Me To You - Part 2 Experience
Vicki's Midnight Train Vicki Eorio When A House Is Not A Home Experience
Between Friends Donna McGary Feeding The Wolf Commentary
Practically Speaking Elizabeth Finchem More ES Hints Education 
A Scottish Accent Rosalie Macrae Our Bonny Bard Experience
Voice Of An Artist Avraham Eilat The Armchair Diary Art
Mailbox Julie Deleemans Miss World Canada News & Events
New Members Listing Welcome News & Events

 

 

 

 

We Are All Different

 

Of course, that is a truism, a statement which needs no proof or argument, since we laryngectomees are male, female, all sizes, races, religions and political persuasions, live in different areas and in different ways. Is there any reason to think that our emotional or physical reaction to having a laryngectomy would be identical? Should we expect someone who lives several thousand miles away to diagnose us and treat us. Of course not. We want to hear what everyone has to say about their experience but let us draw our own conclusions.

You may hear from one person and think, "That's exactly how I felt." And, from another, that makes you say a quick prayer hoping that doesn't happen to you.

In reading the latest on the list, I see people telling their stories and reading those is a great way to learn. What we need is more of, "This is what happened to me and what I learned from it." We need less of, "This will happen to you next."

We still have too many people who tend to phrase it, "You are going to have a hard time with this." Meaning: "I had a hard time with this." but this is far from the truth. We are different. But telling new people that they are going to lose their teeth because of radiation. Don't do that...even if you did. They may have had better shielding because of the location of their cancer or a different type of radiation that can pinpoint and miss other areas. They seem to be able to use less radiation and find it effective. They mix chemo and radiation, which they didn't do back when my cancer was found.

There was a question about swallowing and someone wrote in to ask..."Is this something I will likely have trouble with in the future even though I am not having difficulty now?"

This is taken from an article written in HeadLines about 10 years ago by Dr. William Carroll of UAB Hospital in Birmingham, AL.

"To understand the swallowing changes that occur after total laryngectomy, a little anatomy review would be helpful. The back wall of the larynx actually makes up the front wall of the pharynx or upper esophagus. When the larynx is removed, part of the front wall of the pharynx / esophagus is removed also. When the remaining portion of the pharynx is closed with sutures, the circular opening becomes smaller. Imagine a string tied in a circle. Cut out a piece of the string and toss it out. Now tie the remaining two ends back together. The new circle will always be smaller than the original circle. Just how much smaller depends on how much string was removed."

It is the easiest to understand explanation I have seen and prepares me to answer the above question on future difficulties... with a definite, "Maybe" and an even more definite, "Maybe not" because we are all different.

 

Enjoy,
Pat W Sanders
WebWhispers President
 

 

 

VoicePoints written by professionals 

Coordinated by Lisa Proper, MS-CCC-SLP, BC-NCD-A, BRS-S

 

(LisaProper@gmail.com)                      [© 2009 Lisa Proper]

 


Nutritional Needs at the End of Life

Caryn F. Melvin, Ph.D.
Lisa Proper, M.S.

 

Every now and then you hear the media present reports in which families are arguing over the care of loved ones. Many times, the care that is being disputed is regarding nutrition in a terminally ill patient or in a patient who has significant injury with little to no hopes of improvement. One of the most recent cases that comes to mind is the case of Terry Schiavo, a young Florida woman who had a profoundly severe head injury requiring institutionalization for the remainder of her life. Due to this head injury, she was unable to eat or drink by mouth and, therefore, received all her nutrition via a PEG feeding tube. Terry’s husband wanted to remove the tube and her parents wanted the tube to remain.

What I remember about the media coverage is how they continually reported on how the patient would “starve to death” and what a horrible way this was to die. A little while after this media event, I remember sitting in a lecture by Caryn Melvin, Ph.D., and wondered how the media would have covered the Terry Schiavo case if they had listened to Dr. Melvin’s lecture. Therefore, I thought this would make a good topic for Voice Points. Dr. Melvin has graciously provided her notes from this lecture as well as consulted on it’s content and therefore is the major contributing author to this article.

Lisa

 

When discussing the case of end of life nutrition and providing, or not providing, artificial means of nutrition there are many considerations and questions that must be reflected upon. This starts not only with our own beliefs but with the current state of medical practice itself.

  • Do we increase or decrease the quality of life by continuing treatment in the name of good medicine?
  • Is it easier to fix things than to address the emotional issues surrounding death?
  • Does our own fear of death impact how we care for others?
  • Is there a state worse than death?

Think about how you, personally, would answer each of these questions. Contemplate your answers on a general and logical perspective, not based on an individual you may know in such a situation.

The use of artificial nutrition and hydration via feeding tubes maintains the body; it is not a cure or even a treatment. Artificial nutrition does not improve the functional status of an individual. Nor does it improve nutritional status. Artificial nutrition does not improve survival. It does not even improve pressure ulcers for which many give as a rationale for its use. The use of artificial nutrition and feeding tubes may cause aspiration pneumonia, social isolation, diarrhea, pain and pressure ulcers.

A recent article in the American Journal of Nursing questions those who believe we are morally mandated to provide fluids to all terminally ill patients on the basis of preventing suffering. Such articles often paint a gruesome picture of dehydration instead of presenting the facts or at least the differences between a healthy body and a dying body. The picture often depicted is that of a parched, skeletal victim, burning with fever, convulsing, and retching from a dried out stomach. These scenarios may certainly be true in a healthy individual denied food and water but are not true of the dying body. The facts are that the physiology of the living differs from the physiology of the dying or that of the terminally ill.

When nutrition is withdrawn, terminal anorexia occurs. This anorexic state actually has its benefits. These include an absence of hunger as well as placing the patient in a euphoric state. It provides a natural analgesia. The decreased urine and other bodily fluids from withdrawal is also an obvious benefit. The overall brain perception differs significantly in a patient in terminal anorexia than that of a healthy person and therefore anyone comparing the healthy living body and the dying body is not providing an accurate picture of the patient’s state of being. In fact, forced nutrition can actually rekindle hunger and can cause discomfort for the patient.

As with terminal anorexia, there are also benefits of terminal dehydration which include providing the individual with a state of natural analgesia or improved sense of well being. There are also many obvious benefits which include decreased pulmonary secretions which allows for less need for suctioning and reduced patient coughing. There is decreased urinary load which decreases incontinence and the use of bedpans. Overall GI fluids are reduced as is the chance of diarrhea occurrences.

The benefits of terminal anorexia and dehydration are often interrupted by the well intended decision to place a feeding tube or initiate IV fluids. The decision to provide artificial nutrition and hydration, or not, is difficult for all parties concerned. Feeding tubes in some instances are certainly warranted, particularly if recovery is expected or the careful administration of small volume infusions would improve mental status and decrease agitation.

However in the terminally ill, the decision must be made with care and the knowledge that feeding tubes and IV fluids have not been shown to prolong life. Additionally, once the body has begun to shut down and the patient has reduced or refused intake, the restarting of nutritional and fluid intake can be painful as the dying body has significant difficulty managing fluids. This is known as rehydration syndrome. Rehydration syndrome can result in increased pulmonary and peripheral edema, pulmonary secretions, and ascites. (Ascites is an abnormal accumulation of fluid in the peritoneal cavity.) Further medical interventions are often needed to manage these complications.

Speech Pathologists many times find themselves involved with patients and their care givers in end of life care situations. It is extremely important that we provide only factual information when and if asked and to not bias this information with our own beliefs. We are not the media after all and are not trying to improve our popularity ratings. As a Speech Pathologist we must change our typical treatment goal mentality to a palliative care perspective, not something as a profession we learn about or talk about. However, it is crucial to assist the patient and the caregiver in maintaining realistic perspectives within our areas of expertise and not to cross into the expertise of other healthcare professionals.

As always, we must know when and to whom to refer, especially in such an emotionally charged palliative care situation. Ideally, the health care team, which includes the family and patient, will work together to assist the patient in achieving the best quality of life at end of life. There is such a thing as a good death. With accurate, non biased information, compassion and team work we can take pride in knowing we provide important support at this crucial time in the lives of our patients and families.

I would like to encourage any speech pathologist reading this article and who has more information regarding this topic that they would like to share with the readers, to contact me directly at my email address with your information.

lisaproper@gmail.com

 


 

 


 

FROM ME TO YOU (Part 2)

by Mike Burton,
Middle England, UK

 

With thanks to the Beatles for the main title, the paragraph titles and lyrics.
The names have been changed to protect the innocent and in some cases save their jobs. This story is dedicated to my wife and children for the support they gave me before, during and after my ordeal.

 

Doctor Robert (If you’re down, he will pick you up, Doctor Robert)

 

The building which housed the consulting room was old. The interior was not much better, tiles protruding over an inch from the wall on which they were applied, the remainder of the walls painted slapdash in emulsion, which in places went over the tiles. The heating system looked like it was out of the Ark, not that it mattered today, being so hot. Wall mounted pipes made of painted steel led to large old fashioned radiators. I had not seen anything like this since my first school days, and I was now 54!

We approached the ENT reception where a severe looking lady sat. She was a rotund woman wearing glasses with thick lenses. She spoke with an accent, but we could not put our finger on its origin. Speaking to Susie later, we both agreed it was probably Australia or New Zealand but were not still absolutely sure. “Yes?” she said sternly to us both. I gave my appointment letter to her. Even with the thick lenses she still appeared to squint to make out the contents of it. With the same screwed up face she looked into the computer screen located to her left.

“Yes Mr Burton, please find a seat and you will be called”. Susie and I chose our seats in the rather busy reception area, the air conditioning being provided by one tiny fan in the top right hand corner of the room. Those lucky enough to be directly in front of it were probably feeling little or no benefit anyway. It was later we were to find out, that if you asked the receptionist nicely, there existed the possibility that a cup of cold water could be obtained, if you had your consent form signed. That’s something I will come to later.

I was getting more and more nervous as time passed by but eventually my name was called. Susie and I were half an hour early for the appointment, not that it mattered since I eventually did get seen nearly 30 minutes late! Sheepishly following the nurse, I made my way down what was a short, but at the time seemed like a never ending, corridor and went into the office at the end. There, sitting at his desk, was my surgeon. He was about the same height as me and of Indian origin. He wore pince-nez spectacles and had a large paunch resulting in his trousers being supported by exceptionally wide braces. After exchanging pleasantries and telling me to sit, he produced a metal implement and tried to get a look down my throat, which with almost immediate effect closed up, allowing him no access. He could see the displeasure on my face that no headway was being made. I explained that it was a spontaneous thing and I could not help it.

The room itself was not large nor did it have much in the way of equipment. There was however, a strange looking machine to his right and to my immediate left. He proceeded to turn it on, and at his request the nurse presented him with a long thin plastic bag containing what was a flexible tube. After removing it from its wrapper it was attached to a fixed tube protruding from the machine, a light at the end of it came on and he attempted to put it up my nose to access the throat from that direction. I found this most unpleasant and with no anaesthetic being offered; I started to thrash about like a fish out of water. He must of realised this was not going to work either. Up until this point he was showing all the bedside manner of a Gerbil and must have realised he was getting nowhere. Making audible snorting noises that a horse after a good gallop would have been proud of, he decided that an MRI scan was required. He then told me he would arrange for this to be done and I would hear from his secretary soon.

I left the room feeling relieved and with an “I won that round” smile upon my face and at the same time thinking about what was still to come. But, if there was a God could He please arrange it for The Gerbil to have the tube surgically inserted up his arsehole please?

A week or so had passed when my MRI appointment arrived. It was set for a weekday in the early afternoon. I arrived at the hospital in good time for my appointment but was soon to realise that I had left all the information supplied by the hospital at home. It was too late to go back now.
Just by the main entrance there was a map of the hospital with an index at the side. There was a rather large man trying to access it at the same time. I managed to manoeuvre out of his way to the index side and proceeded to look for the MRI department. Nothing of that name existed. Fucking stupid map I thought, how are you supposed to find it if it’s not mentioned? I went into the hospital itself thinking that the UK NHS system was all rubbish, I needed a bloody PhD to find some god forsaken department I mumbled to myself. Then I spotted a porter and approached him to ask for directions.

“MRI scans”, said the porter, poking his chin with an almost confused look on his face. “MRI scans”, he muttered again to himself. “Oh yes!” he said with a rather pleased look, “Try the x-ray department, mate. Carry on past the hospital bistro and you will see a set of stairs on your left. Take them and turn right at the top, the x-ray department is on your left.”

“Thanks mate”, I said, as I went on my way.

He was right. Arriving at the department I saw the signs directing me to the MRI section. At the check in, I explained that I had left all the literature at home, but after telling the nurse my name and time of my appointment, the receptionist asked me to take a seat in the waiting room and shortly after another nurse appeared. In her hand she had a clipboard with a checklist which I was asked to complete. I did this with a little help from her at times. The nurse left me taking the completed signed form and told me to wait until I was called. This allowed my imagination to go into overdrive and all manner of worries would enter my head. But luckily today it was short lived as the same nurse came for me.

“We have quite a long walk today”, she said. “Our machine is out of order because the treatment room is being refurbished.” I just listened and walked beside her through a maze of corridors not normally available to the general public. We then reached a door which the nurse opened and we were now in the street again. She turned left, as did I and then stopped by a trailer that had been towed there. “Here we are, Mr Burton.”

The temporary MRI unit was in the road nearly opposite the car park, only thirty metres away from the Hospital entrance and even closer to the map that I could not find the MRI department on in the first place! I had really just gone round in one big circle! I entered the trailer. I had always suffered from claustrophobia and with just one look at the machine I could feel a panic attack coming on. A nurse passed me a solid plastic basket.

“Put all of your personal effects in there please, that includes rings, money, watches credit cards etc, everything!”

I did as I was told and explained to her at the same time about my claustrophobia. The nurse replied that they would be as quick as possible to keep my discomfort to a minimum. But the longer they could get me to stay in there the better the results would be. There was also an intercom where we could talk to each other if need be. I got onto the couch.

“Would you like to listen to some music whilst you’re in there?” the nurse asked. “Please” was my reply. Earphones were placed on my head. I adjusted them to fit a bit better. At my request it was playing radio 2 and I was pushed into the cylinder.

Laying there with virtually no room to manoeuvre, the radio then ceased and one of the nurses spoke to me via the headphones.


“Ok Mr Burton, we are going to start the machine now so you will have some idea of the noise levels”. With that being said, the music then resumed and I closed my eyes and clenched my fists, hoping I could cope with all of this. After a short burst the machine noise stopped.

“There you are, Mr Burton, now you know what to expect, so let’s get the scan underway, shall we?”

The MRI scanning machine was unbelievably noisy. It was a loud clanging noise inside the cylinder like somebody was hitting it on the outside repeatedly with a sledge hammer; even the headphones playing music were not blocking the noise out fully. I was beginning to get twitchy and although I didn’t know how, the nurses could obviously sense this. The machine stopped, I then relaxed and thought it was all over.

A voice came through the headphones again. “Mr Burton, you have been very good up until now, much better than we had expected. I would like to get some more shots of you so if you could just grin and bear it for a little longer that would be great. Just wave your hand if you are ok with this for me please.”

I didn’t want to go on really but I raised my right hand up as far as I could within the confines of the cylinder. The machine started up again. It seemed to go on for ages but in hindsight was probably no longer than a few minutes. Then it stopped again, I was pulled out and the headphones were removed.

“Well done, Mr Burton, well done, said the nurse. The other nurse said, “I managed to get more shots of you instead of just the one we were planning.”

I went to leave. “Hang on, Mr Burton, don’t you want these?” offering the plastic basket containing all of my personal effects. I had not realised until then just how desperate I was to get out of there. Outside, in the bright sunshine, walking back towards the car I lit and had yet another well earned cigarette in my hand.

I was always confused why smoking was not permitted. The answer was to come from a source within the hospital at a later point. This was not a health matter for the masses, although that was what you were meant to believe from the media, politicians, and UK NHS. The naked truth was that it reduced the hospital insurance bill by a vast amount of money per year (GBP 300,000 I was told for this hospital alone) it had nothing at all to do with the nation’s health. I was just another amount the Government or the Trust did not have to fund. Things have now changed, but this was 2006.

I found my way back to the car and proceeded to make my way home.

 

…to be continued next month “When I’m 64”
 

 

 

 

The Armchair

 

 

I stayed at Raffi's place in NYC after the laryngectomy operation. My job was only to recover. I had plenty of time, and no deadlines of any kind. The real burden laid on Margol's (my spouse) shoulders. She had to deal with the suction machine that broke down in the first night, with getting a cab twice a day to take me down to the hospital for treatments, with all the domestic arrangements and above all - dealing with the worries and fears of the unknown new situation. I was just sitting there like a potato, with the oxygen mask over my stoma, the rubber tube in my neck – waiting.

While still in the hospital, Margol's sister, Yona, who came from Maryland to be with us, gave me a sketch book and children's color tip pens. The first pages in this book were used to explain to my curious visitors what was going on with me and how things were working technically. I had to write everything down and draw illustrations.

Now, at Raffi's place I realized that just waiting was not my kind of thing. I am an artist. I have a sketch book and pens, and Raffi has two armchairs covered with sheets. I found those old creatures to be full of life and appealing. I decided to draw them, knowing that if I concentrate on just one simple object - a whole world can be portrayed.

Raffi's late father, Dr. Haim Gamzu, was a well known theatre critic and art historian, as well as Director of the Tel Aviv museum of Art. Therefore, at Raffi's place you could find books about the history of Israeli art. I gradually began to insert bits and pieces of those into the armchairs drawings.

A few months later I had to return to NYC for a checkup and again we stayed with Raffi, who served for several years as the Israeli cultural attaché. I had my sketch book and pens with me and continued to draw the armchairs, adding this time segments inspired by exhibitions I saw in NY during this visit.

The armchair book was later scanned and printed as an artist book in a small limited edition, signed and numbered.

 

Lesson No. 1
 
r22s r7s
   
Demons (Fathers of Israeli Art) The Leg
   
Menachem Shemi, "The Artist Wife with a Cat",1922-1925 Itzhak Danziger, Nimrod1939
   
Shemi's Cat Armchair with Nimrod

 

 

 

 

 

 

 

When a House is not a Home


 

It was six years ago and life was good. I had a new job in Atlanta and was excited about both the job and the location. I was a die-hard Midwesterner who hoped to be accepted by folks in the deep South. My job promised to be for several years as opposed to my years of consulting which required several moves around the country and never buying a home because of the uncertainty of the length of the assignment.

My husband did most of the house hunting, keeping in mind that my demands were few. I wanted a fireplace, a gas stove, and a fenced in yard for Annie, my beloved dog. Outside of that, it was up to him. I trusted him 100%. He would save only the “probables” for me to see after work since we were still commuting to Atlanta for the work week. Believe it or not, this was to be the first home I would own. Of course in my first marriage my name was on the deed but it was never “mine”.

Although I wanted to live in the city, the crime rate and housing availability in downtown Atlanta were both over the top for us. So I was not happy about the length of the drive to a little suburban town called Duluth but being from Minnesota with its own Duluth, I thought this a good sign. And it was in Duluth, Georgia, Frank found it. A much older couple owned it and had been there since the 50's. It was a traditional ranch from that time with added on rooms. This created a multitude of doors, closets where you would not expect them, the master bedroom in the “basement” (just below ground), a couple of rooms really in the basement, my fireplace that I required, a gas stove in a nice sized kitchen and, to top off its uniqueness, a huge jacuzzi through patio doors off the living room! When Frank and I talked about it in the wee hours we could not remember what was where! We did know we loved the half acre with the yard for Annie and the possibilities that existed for the house. And so, it became "mine".

My job was stressful but fun. I had adjusted to being a lary as had my co-workers adjusted to my being one. The ride to and from work was softened by listening to books on tape since I had little time to read and loved to do so.

And then life turned. The company contract with the State was lost. I was reassigned to a job I could not tolerate. I couldn't wait to get home, a place I loved and was safe. We talked about how I might look for another job but I had not been able to do much networking in my new city so we weren't sure what to do. We knew for my health and emotional well being, I would have to make a change either in the company or out of it.

Then I had a stroke. Getting ready to go to a job I hated, my left arm would not work. Soon my left leg was dragging, next my face started to droop. I could only write on a pad to my husband that I was having a stroke. He called our wonderful PCP who said not to wait for an ambulance but to go to the designated stroke unit and he would call them to expect me.

For the next 13 days as I was hospitalized first in ICU and then a rehab hospital, I begged to go home. I promised I would do anything, just let me go home. I wanted my bed, my animals, my home. I promised to be good which was quite a concession for me. And finally I came home.

Frank who was my lary caretaker now found himself in the position of caring for a lary with a stroke. He was wonderful and so innovative. He removed all area rugs so I wouldn't slip. He hired someone to make the shower accommodate a shower chair and multiple hand bars. In fact, he had walked the house to figure out where I would eventually walk and installed hand bars for my safety. He even had our bed moved upstairs to the living room. To me, that was perfect because I was so afraid of being alone. The doctor told me most people have strokes during their sleep so providers can't administer the drugs that minimize the effects of a stroke. I didn't want Frank to even leave to get food.

Eventually I started out patient therapy which was such hard work but so rewarding, like the day my left hand squeezed the handles and registered a new high. My therapist and I both cried. Life was getting better.

Best not to count your chickens before they are hatched. Persistent back pain that would not improve with therapy was discovered to be caused by the total collapse of 3 vertebrae on each other with no discs left. The lumbar fusion surgery was terrible from day one. They insisted I remove my TEP and put in a catheter to keep the puncture open because the anesthesiologists were afraid of the TEP. No amount of education would change their mind. Coming home full of such pain I had never experienced nor dreamed of. And it did not let up.

Weeks and weeks went by without any improvement. I was frightened by the pain pills but couldn't go without them. This was the second time I lost my mobility. For the first time anger and depression moved in. They were everywhere. They were in my bed when I couldn't turn over without help or blinding pain, when I couldn't sit up for more than an hour, when I needed the walker again and every mobility aid Frank had installed. And being so angry and depressed aggravated the effects of my stroke.

There are not enough words available to thank our Pat Sanders and Barb Statton who emailed me constantly. Somehow Barb sensed my love of animals and would send me something almost every day about animal antics including her journey of buying a new dog after losing her pet. The emails were always there between the junk mail and more questions from the company responsible to pay my disability. Even with all the love and attention from Frank and Pat and Barb, I sank deeper and deeper. No longer was this a home. It was a prison. Just when I had learned to get in and out of the car after the stroke, I had to learn again. But the pain was too severe so I just gave up. I felt trapped in this place. I wanted the rugs back, to be able to cook a meal, to walk with Annie, to go someplace besides a doctor's office, to not be in bed, to not watch anymore TV, to read a book with pleasure and understanding (something I had trouble with following the stroke), to not cry every day, to see my kids who are hundreds of miles away, to do something, anything BY MYSELF. I hated the bed in the living room. It represented everything that was wrong with me. I even was angry with the animals because their hair was all over the bed covers. The potty chair was still needed and was there, right in the living room. Just what would House Beautiful or Martha Stewart recommend as decorating ideas around a bed and potty chair in your living room? I offer the challenge!

Oh, how I hated this place! Please God, I would pray, let me out of here! But it was not to be. I am still not able to walk without a cane. I still am in pain most of the day. I still don't leave the house but it is partly due to finances since like most of us, I am broke. I can't return to work, they terminated me (which was illegal but I choose not to fight it). They are so big (international, $40 Billion company) that I don't stand a chance or maybe I did. But I choose not to return to them and that is a good thing, a decision my husband and kids agree with because we are not so sure the stress there didn't play a significant part in causing my stroke. (my blood panel just weeks before the syroke was normal including cholesterol).

However I have found some peace or acceptance. You know the bed in the living room is a nice thing? Especially when there is a fire in the fireplace. And the potty chair is so close that my feet don't even get cold when I go to use it. When the pain gets to me I can lie down and watch a CD or read a book and know Frank is close by if I need him. A good bath of all of the animals has eliminated most of the animal hair. I can see my plants in the sun room which is minus the jacuzzi. During the summer I watched 2 baby hawks try to learn to fly. Their launching pad was the roof of the garage. Mama Hawk was not seen but certainly heard. My kids have visited and accepted our crazy living situation. The rugs are back in place and I don't trip.

All I asked for from my kids were candles. We got the most beautiful candle holders made by Sophia, my 3 year old beautiful grandchild. Frank promises to buy more. I am used to living with pain and determined to get an exercise plan from my doctor to help me move more naturally. My neighbor sent at least 20 books and if I work hard at concentrating, I enjoy them. More wood is coming for the fireplace. A gracious neighbor blew all the leaves, for us, asking only for a loaf of home made raisin bread. Another neighbor sent enough Xmas candies and goodies that we were on a sugar high for days. I have stopped just throwing mail into the sun porch and have almost finished going through it with a firm determination not ever to get in that habit again. I cry less. I hurt less. I have a home again. And when the train goes by, I don't think it is taking something away. No, it is bringing something home.

 

Vicki
 

 

 

 

 

Feeding the Wolf

 


During the recent celebrations surrounding the inauguration of Barak Obama, one speaker referenced this legend and I have been haunted ever since by its powerful message.


An old Cherokee is teaching his grandson about life. "A fight is going on inside me," he said to the boy.


"It is a terrible fight and it is between two wolves. One is evil - he is anger, envy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority, and ego." He continued, "The other is good - he is joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion, and faith. The same fight is going on inside you - and inside every other person, too."


The grandson thought about it for a minute and then asked his grandfather, "Which wolf will win?"


The old Cherokee simply replied, "The one you feed."


Whether we labor on the international stage where old grievances and new realities clash like Titans threatening the lives of hundreds of thousands lesser mortals or simply muddle around our daily lives trying to play the hand we have been dealt, this is food for thought.


Who will we feed?


It has been my experience that the evil wolf is very seductive- even charming sometimes, and quick to share the spoils of his feast with you…at first. It feels good sometimes to lash out at the weak, blame someone else for your failures, gloat in your successes, delight in someone else’s misfortune. It is one of the oldest (and cheapest) tricks in the book…make yourself look better by making someone else look bad. I loathe admitting it, but I am guilty and I suspect, unfortunately, that just about everybody I have ever met has fed THAT wolf more than once. That does not make it right and, unfortunately, as most of us learn, it begets a very hungry and unruly wolf. It would have been so much better had we never fed the thing, because it keeps coming back and it is a bully. It will haunt us, whispering, “Remember how good it felt to rip and tear and destroy.”


The good wolf, on the other hand, is just not as compelling and glamorous (by the way, the word glamour originally referred to the aura cast by a magic spell). The good wolf sounds like a very earnest Boy Scout and, frankly, I don’t think he is a very persuasive salesman. It is just not all that much fun to be good, sometimes. There is a much more immediate reward in gossip than there is in forbearance. Even the words are more exciting. Poor good wolf. He doesn’t stand a chance.


It is surprising he ever prevails, but he does, time and time again…and every time we feed him with kindness, courage and dignity his nasty twin slinks just a little bit further away from our door.


Recently a friend commented on the difference between my writings early on in this journey and now. He is so right. In the beginning, I was angry and fearful…defensive and wary. I didn’t realize it, but I was just trying to survive. Cancer is a pack of evil wolves at your door. I fought fire with fire sometimes, in those days. I had many good wolves too, vying for my attention and when I couldn’t feed them properly, others did that for me, to ensure they would keep coming back. They did, thankfully…the bad wolves are still out there and occasionally try to slink back for a handout of sloth or bitter self-pity but it’s slim pickings most days.


The good wolf is a hard taskmaster, despite its humble demeanor - reproachful wolf eyes will keep you awake  nights - but there is no better companion than a happy well fed good wolf.


It seems a simple thing to feed the good wolf rather than the bad. I think we all know it is the right thing to do, but it is so hard sometimes to choose hope over despair, compassion over scorn, joy over bitterness, and love over hate. It really is that simple. We are the fortunate ones in this battle. We chose life over death and we prevailed.


Here’s to keeping the evil wolf at bay.

 

 

 

 

 

More Esophageal Speech Hints

 

During the years following my own rehabilitation I was taught how to teach both new laryngectomees and speech pathologists. Trainers are always searching for words other than injection, swallow air, or burp to convey what it really feels like to use ES. These are some basic ideas we were taught, meant for our own practice, and then to share.

I often find myself repeating phases I’ve heard my mentors tell many classes over the years. Here a just a few from Jim Shanks, PhD:

“Air in, sound out”
“Take time to talk”
“You have to put money in the checking account before you can write the check”
“Open your mouth”

His point was we must take time to actually do the homework…practice on our own. “Air in, sound out” is the basic principle we have to master using our esophagus in a new way.

“Take time to talk” was suggested as a walking/talking exercise. It taught me a technique for producing consistent ES on demand and rate of speech. “Air in, sound out” is the phrase I used while I walked along and practiced between lectures.

“Money in the bank” was a way to help folks understand that they had to find a reliable way to get air into the top of their esophagus if they wanted to have ES sound on demand.

“Open your mouth” was a directive to those who are in the habit of mumbling or speaking without opening their mouths, ending up with poor articulation. Articulation matters whether you are learning to speak with ES, EL or TEP. Have you ever heard a local news anchor say “worl” or “win” when the words were “world” or “wind”? I have, and noted at the time just how important that final consonant is for me as an esophageal speaker. The final consonant is often used to link that consonant air to support the next word especially if it begins with a vowel. Example: World_hunger. H is not a vowel, but it is a tricky sound to master without lung air. Another example is: sat_on. The point is, the final consonant is extremely important to support fluent ES.

In a nutshell here are a few basic steps to keep in mind:

“Air in” means air taken into the top of the esophagus using consonants like t, d, p, b, k, ch or st. Another method is tongue pressed against the roof of the mouth (also referred to as glossopharyngeal press). The third method is inhalation of air from the nose and mouth when the top of the esophagus “clicks open” causing a sucking vacuum of enough air to say “ah”. You may hear this “click” when you yawn.

“Sound out” involves coordination between knowing when the air has entered the top of the esophagus, and tightening of the abs, or diaphragm muscles, simultaneously articulating as you always have. The teeth, tongue and lips still know how to move as they did for most of us with only a total laryngectomy. What is missing is the vibration of the vocal cords as a sound generator. The air moving up and out of the top of the esophagus vibrates similarly, and provides a new sound generator. One of my students described it this way, “it’s like gargling the air in your esophagus”. He couldn’t be more right. What a great way to re-program your brain for keeping this air for speaking near the top and not entering your stomach. So much for the “swallowing air” theory.

We all know what it feels like to throw up. Aside from the unpleasant experience we associate with being sick and would rather avoid, as ES students we can build on some of the actions our bodies did automatically when we needed to move stuff up and out of our esophagus. It is necessary to have a little chat with our personal brain computer and enter “re-program”. We can use the esophagus to inflate and move air up and down the length of it, sometime turning our head a little, or tilting off to one side as we often do to express ourselves while speaking. Every turn, twist and tilt is like altering the sound of air escaping out of the neck of a balloon. We can control this action for pitch and volume control as we speak esophageally.

Another way I teach my students to have better control of their esophagus is what I call the “sigh/swallow” technique. Fluent ES is achieved best when we can keep our neck and shoulders relaxed. If you are experiencing difficulties, swallow two or three times to clear your mouth, take a deep breath and hold it with your shoulders pulled tightly for as long as you can hold the breath….then exhale slowly and relax your shoulders. You will feel the warm feeling of blood beginning to flow again, and your shoulder muscles will be much less tense. With your mouth and esophagus clear of saliva you are ready to speak with a better voice. Sometimes a sip of water will also open the swallow sphincter enough to let excessive air up at this time. This excessive unused air in the esophagus will shut down a practice session. Sometimes just getting up to walk around will help to release what some call a burp; it’s all the air that you put down and didn’t use for sound.

Please don’t worry about being loud enough at first. That will come later. Speaking softly will help you become more consistent in the beginning. Too much air taken in at once produces a “klunk” sound as the air enters as a gulp. Attempting to fall back on the old method of using lung air to produce speech will cause stoma blast, and it will tighten up the neck and shoulders we just managed to relax. If you need to be louder, learn to use one of the many excellent battery powered amplifiers available today.

Imagine a sewing machine needle injecting one stitch of air at a time instead of thread, and the bobbin thread is the tension below as the abs giving support for each bit of air injected. With this in mind your ES will be just as even as a seam, and just as consistent; even if you want to use a pregnant pause to deliver a punch line.

Effortless speech is the goal. Working “hard” at ES is guaranteed NOT to work. Past articles on ES for Whispers on the Web that you may find helpful ran Nov. ’07, Nov.’08 and Jan. ’09 and are available on the WW Website by accessing the index for Newsletters. If you have questions please feel free to email me at:

elizabethfinchem@comcast.net.

Elizabeth Finchem

 

 

 

 

In Loving Memory of our Bonny Bard....

by Rosalie Macrae


Maybe it is just that the Celts are a macabre lot but when I was a girl we used to have great fun playing a game called Would You Rather. This involved deciding if we would rather be deaf or blind or dumb. You know, the three wise monkeys. Hear no evil, see no evil, speak no evil. Most of us in my gang decided we would rather be dumb, including myself. At least we would be able to see our weekly war ration of sticky sweets carefully poured into the poky bags, every sugary bit a legal must. At least we would be able to hear the air-raid sirens and tumble out of bed into the Anderson shelters for a singsong. Not being able to speak would not be much fun but we thought it was insignificant compared with the other two. We usually wrote secret notes to each other anyway about things which would cause combustion in a confessional. Imagine telling a strange priest that Bill Walker had touched you there!

I was going to expand on this. None of us had ever really explored the idea of being without speech as we were too busy talking all the time. But that column will have to go in the Futures tray. I had forgotten all about Burns Night to commemorate Scotland--and the world's--favourite poet. January 25th. That was yesterday, and I ache all over. I went through three batteries in my Servox, two of them definitely by letting forth hoochs while spinning around in the Eightsome Reel vortex. Far too complicated to explain, but a voice would have been no help at all believe me. A lot of you will have been there anyway, still bearing the bruises.

It was a great night in every way.

Thank goodness it was totally unlike the Burns Night five years ago which was a weird day, starting with a long buff letter from the ENT giving me an X-Ray date which I felt uneasy about; no real reason. Everybody had hoarse throats I reasoned. My Macrae kilt had not come back from the cleaners and I felt diminished in a borrowed tartan skirt--not my clan. These things run deep.

My beloved Ray had died the previous summer, and everyone was recalling with affection how he, an Anglo-Italian, had acquitted himself the year before. He had delivered Ode to the Haggis before letting all the mystery ingredients gush out with a mighty thrust from a poker, and I missed him oh so much.

Then the shame of it. On that night in 1994 the kitchen mandarins had done their calculations wrongly and run out of haggis. Our French twin town guests looked dumfoonered as Rabbie would have said, to be served up with really boring lamb stew. And believe me, a boring Scottish lamb stew is as boring as mutton (dressed up as lamb, my grandfather used to pronounce) can get until it is perked up with rosemary and pickles. In Scotland? Rosemary..pickles. Joke bracket. To keep things at this mournful level my voice disappeared completely while I was trilling that my love was like a Red Red Rose. The doctor sitting beside me raised an eloquent eyebrow. I assured him it was all in hand.

Last night was a swathe of fun cutting through the midwinter blues. My platonic escort was a great Scottish dancer and knew how to reel a woman around the space without trying to prove his strength. I remember another Burns night when a big hefty caber tosser, flung me on to the splintery floor of our village hall. He picked me up while I removed shards from my derriere and said with a happy shrug that as a farmer's son he was used to cairtin' tatties. Carrying potatoes. Would I like to go to the pictures with him to see Spartacus. Not on your life, son.

But this year everything was right. Because of the laryngectomy I had been excused singing duties but joined in the chorus of Auld Lang Syne. No French connection to impress. It is our turn to go over there this year. Idyllic village in Burgundy on Bastille Day when wine flows from the village fountain. That will not run dry like our haggis supply. I slipped into the kitchen and gave the cook my own haggis, the pinhead oatmeal and offal blended right down to avoid any choking mishaps on the kilt. We toasted old friends, my lary friend across the table looking increasingly jolly, and we sang Auld Acquaintance, the sweetest words of them all being sung in hundreds of languages throughout the world where friendship is hallowed. The fervour drowned out my unique counterpoint contribution.

I hope that the Hindi gods will allow me to enjoy the very mildest of curries at my birthday party tonight. After which, Burns be praised, it will be back to hibernation until spring when green grow the grasses-o as he showed his lasses, and remembering my digestion with overbrewed tea and undemanding, pure, brown, (Memo. Find out how do they all get brown ? ..answers welcome.) free-range poached eggs, without a whiff of garlic and the merest breath of white pepper.

To you, dear folks, as Burns said, and I translate....here's to us, who's like us, very few and they are all dead.

http://uk.youtube.com/watch?v=vXX2AJkKJNI

Listen to this if you can......Kenneth McKellar, Scottish tenor, singing 'My Love Is Like a Red Red Rose'. I defy you not to cry!

 

 

 

 

 

Hello,


   

My name is Julie Deleemans. I have been a WebWhispers member for the last year. In March of 2006, when I was eighteen, I was diagnosed with stage 4 larynx cancer and immediately had a laryngectomy, followed by chemotherapy and radiation. There is no known cause for my type of cancer. I use a TEP to speak.

I will be competing for the title of Miss World Canada 2009 in Toronto in March! Out of thousands of girls across Canada who applied for a spot in this competition, only forty-five of us were chosen to compete for this prestigious title! The winner will go on to represent Canada in the International Miss World competition, which is to be held in Johannesburg, South Africa, in late 2009.

 

The Miss World Canada Beauty Pageant began in 1951 and has since developed into an internationally known label and success. The motto of the Miss World Canada organization is “Beauty with a Purpose” and this is demonstrated in their involvement with many children’s charities around the world, in particular the SOS Children’s Villages Charity. Please check out more about the Miss World Canada organization by visiting their website: http://www.missworldcanada.com/index.htm

and check out my group on facebook:

"Julie Deleemans for Miss World Canada 2009!".

I was raised on a farm just outside of Aylmer (Ontario). I have ridden horses competitively since I was two years old

up until I was about eighteen, however now I just ride for fun; I also love animals!

Obviously my laryngectomy has had a huge affect on me and the person I am today; it also allowed me to discover my passion for helping others in need and my desire to pursue a career in Health Sciences as a Medical Radiation Technologist.

I have volunteered with Animal Aide, SARI – Therapeutic Horseback Riding for Children and Adults with Special Needs and Robertshaw Moncrief and Associates Veterinary Clinic in Aylmer, to name a few. I soon plan to be volunteering for the Canadian Cancer Society also. Some of my interests include horseback riding, baking, reading and writing, spending time with family and friends and of course my pets!

If I were to earn the title of Miss World Canada I would like to be able to inspire others who are having a tough time. I would hope to show them that even if life has dealt them a poor hand they can still make something out of it and achieve even their most unlikely of goals. I would strive to use the title to give hope to people who need it and to show them that if you work and try hard enough anything is possible.

Should anyone like to get more involved with supporting me you can do so by visiting the Miss World Canada website and voting for me for the People Choice Award; if I win this event I will automatically advance to the semi finals!

I would like to thank everyone who has supported me thus far and I hope to make you all proud!

Best Wishes,
Julie D

 

 

 

Welcome To Our New Members:

 

I would like to extend a "Warm Welcome" to our most recently accepted laryngectomees, caregivers, vendors, and professionals who have joined our WebWhispers community within this past month. There is a great wealth of knowledge and information to be accessed and obtained from our website, email lists, and newsletters. If ever there should be questions, concerns or suggestions, please feel free to submit them to us from the "Contacts" page of our website.

 

Thanks and best wishes to all,

 

Michael Csapo

VP Internet Activities

WebWhispers, Inc.

 
 

We welcome the 47 new members who joined us during January 2009:

 

Shirley Adams
Pullman, WA

Mike Almond
Tujunga, CA

Robin Almond - (Caregiver)
Tujunga, CA

     

Steven V. Austin
Virginia Beach, VA

Leo D. Bennett
Attleboro, MA

Laurie Bonante
Reynoldsville, PA

     

Judy Butler
Philadelphia, PA

Ginny F. Chapa - (CCC-SLP)
Jacksonville, FL

Jody Conant - (SLP)
Grand Rapids, MI

     

Diane Farren - (Caregiver)
Carrickfergus, Northern Ireland

Raymond Farren
Carrickfergus, Northern Ireland

Charles J. George II
Decatur, GA

     

Leslie Getz - (Caregiver)
New York, NY

Carl Golightly
Paducah, KY

Sara Golightly - (Caregiver)
Paducah, KY

     

Samuel Ray Harkins
DeSoto, TX

Dolores Kathleen Huard
Quebec, CAN

Susann M. Hunter
Spring Hill, FL

     

Mike Kenny
Grand Rapids, MI

Ernie Labelle
Ottawa, CAN

Chuck LaBreche
Amery, WI

     

Deborah Landes - (Caregiver)
Sacramento, CA

Richard A. Lane
St. Louis, MO

Gary Lavezzi
Moberly, MO

     

William Marren
Hallandale, FL

Bob May
East Sussex, UK

Donald McDonagh
New York, NY

     

Bernard F. McLaughlin
Chicago, IL

Margaret M. McLaughlin - (Caregiver)
Chicago, IL

Lawrence Miller
Schaumburg, IL

     
Robert B. Mitchell
Grantsville, UT
Vicki Mitchell
Bovey, MN
Zack Mitchell - (Caregiver)
Grantsville, UT
     
Richard Mosner
Troy, MI
George Nigg
Kelmscott, WA, AUS
Lee Page
Sacramento, CA
     
Stephen R. Parker
Tucson, AZ
Lecia Reardon - ENT (CORLN)
Mount Olive, NC
Douglas Russell
Pace, FL
     
Sreekanth Purandaran
Cincinnati, OH
Susan Sargent - (Caregiver)
Spring, TX
Patsy A. Strom
Charlestown, MA
     
Judith Lam Tang - (SLP)
Edmonton, Alberta, CAN
Randall L. Tolbirt
Pleasanton, TX
Onur Uncu
London, UK
     
Tiffany Walthour - (Caregiver)
St Johns, FL
Wendell Charles Williams
Anna, TX
 

 

WebWhispers is an Internet based support group. Please check our home page for information about the WebWhispers group, our email lists, membership, or officers.
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           Managing Editor - Pat Wertz Sanders
           Editor - Donna McGary
 

 

 

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