May 2009

 


 

 

Name Of Column Author Title Article Type
News Views Pat Sanders The Unexpected News & Events
Voice Points Lisa Proper MS-CCC-SLP An ALD Refresher Education-Med
WebWhispers Columnist Mike Burton From Me to You-Part 5 Experience 
Vicki's Midnight Train Vicki Eorio Laryngectomee Father / Daughter Experience 
Between Friends Donna McGary Counting My Blessings Commentary
Practically Speaking Elizabeth Finchem Are We There Yet Education 
A Scottish Accent Mairaid Sweek Remembering Rosalie Tribute
Voice Of An Artist Avraham Eilat The Creative Process Art
New Members Listing Welcome News & Events

 

 

 

 

The Unexpected

 

Yesterday morning I left home to drive to see my cousins in NC. No rush and I have always enjoyed being in a car on the road with things to see and time for thinking without interruption.

After crossing the AL-GA state line, the traffic was thinned out and I sat back, cruising at or near the speed limit, to enjoy the drive before approaching Atlanta. An 18 wheeler was passing when, all of a sudden, I felt a thump and my car being moved. There was a screeching..at the same time, I could see the curved black metal against my driver's side door. I pulled my wheel to the right and for a second did not know if I was flying off because I had steered there or because I was shoved or both. I saw green, steered back, and was able to stop on the side of the road. Only seconds had passed and I could see the truck down the road. I had a flash that he was not stopping before realizing he was trying to get over.

As he got to the side and stopped, I eased forward to see if there was any scraping metal sounds. It moved smoothly so I crept forward, past an entrance ramp and slowly moved to park behind him.

His first question, as he hurried to the car, was, Are you OK? I said I was, got out of the car, shaking a little but thankful the door would open. He was telling me how sorry he was as I stood looking at the side of the car. I turned to look at him and my first real words were, "I am so lucky." and he paused, then said to me, "We both are."

He told me I was in his blind spot and he had looked both forward and back and didn't see me but when he started to move over, he heard the lug nuts hit the side of my car, knew immediately what happened, and yanked the wheel to the left. One or two seconds later in our pulling away from each other and his right front tire would have chewed into my back left tire instead of just the medal panel in front of it and I doubt I would be here today to be writing this.

Later in the afternoon, and later than I expected, I was crossing the GA-NC line, having made it through the tangle of expressways/throughways that is Atlanta, with great relief at getting to the other side. I was thinking as I drove about some of the recent messages to the WebWhispers list.

There has been a discussion about handling whatever comes along. We have had discussions on the glass half empty/glass half full many times in the past. As with our cancers, treatments and voices, we are, again, all different in our reactions to occurrances in our lives. I don't know if we can change from one attitude to the other. If we can't, then I am happy with my glass half full. I have often said of my two cancers that I am lucky that each was found in time to save my life and to be removed (along with my original voice).

My first words to that truck driver, without thinking of what I was saying, followed the same thought -- that I am lucky to be alive.

And so it is this morning. Life may be flawed but I am lucky to be here. Lucky to be alive.

 

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]

 


An ALD Refresher

Lisa M. Proper, MS CCC; BC-NCD; BRS-S

 


I recently gave a talk about the artificial laryngeal device (ALD) to a group of practicing Speech Pathologists (SLPs). The content of the talk was greeted with enthusiasm by even those SLPs trained and proficient in the device, as they stated that a periodic refresher is always welcomed. Therefore, the topic for this month’s article was born. This article is not meant to train anyone in the use of the ALD but is to provide a reminder and updates per the use of the ALD. Should you desire more information of training and other tidbits one is encouraged to read the previous articles written in VoicePoints as well as other publications.

The ALD is a versatile device coming in all shapes and sizes, ways of use, activation, etc. This versatility allows the ALD to be used not only by the laryngectomee population but other patient populations as well. This is often overlooked by many SLPs. Any patient with symptoms of aphonia/voicelessness may be a candidate for its use as long as articulation is relatively intact. For example, ALDs are commonly used with tracheostomized-ventilator dependent patients. While a speaking valve may be the ultimate goal for these individuals, we know that this may not always be possible. Being able to use some of these speaking valves generally requires a considerable amount of time until one can utilize the valve for all the hours in which the patient would be awake and desiring/needing to communicate. An ALD may be the answer for these individuals even if just as a temporary use solution. The ALD should be considered for use with multiple populations. This should be included in any facility budget request for the purchase of an ALD, as it will demonstrate increased need and device versatility, which will increase the likelihood of achieving budgetary approval.

One of the most frequent comments I hear from SLPs is, “My patient doesn’t like the ALD" or "He has no desire to use the ALD”. Additionally, when they meet a new patient whose only form of communication is writing and inquire about the ALD, the response is generally one of “I didn’t like it”, “No one understands me”, or “I can’t use it” whether they have a device or not.

While we all encounter some individuals who have this lack of acceptance of the ALD, I have found this to be an infrequent occurrence. If a patient has declined the use of the device, it is extremely important to examine the education and training a patient has received or not received regarding the use of the ALD. Whether it was the training received from you as their SLP or another. It is not only the role of the SLP to assure that the patient is educated and appropriately trained, but to assure that the family and/or significant others are sufficiently educated and that an atmosphere of acceptance is fostered throughout the initial session.

There are several steps that are involved to ensure that the SLP has provided the necessary information for which a few, but not all, will be discussed. One initial step is to be sure to have several devices available for demonstration and trial. This is especially important for the patient who is “on the fence” about using an ALD. After all, we rarely purchase anything without trying it and/or seeing it. Why should a patient buying medical equipment be any different? In my own practice, I always show the patient at least three devices initially. I will add additional devices if the initial three aren’t providing the desired results. However, if one of the initial three devices is adequate, the patients are told there are other devices and in my case, they always saw my supply of the large number of possibilities and they are always given the opportunity to try others should they desire. These practices also provide the patient with a feeling of the device being chosen specifically for the patient.

Having several devices may prove a challenge for an SLP in a facility with little or no funding for the ALD. However, not having a device is not an acceptable “excuse”. There are several options. One may borrow the devices for a few days from several sources. One source may be another SLP, a patient you know who has more than one device, the local laryngectomee club as well as some of the suppliers of ALDs. If the ALDs need to be borrowed, this arrangement should obviously occur well before the time they are needed, such as, at the time of the pre-operative consultation or, even better, at the time the surgery is scheduled. (A relatively easy task to accomplish.) There are also various options for facilities to purchase the devices. Many of the manufacturers and suppliers have new devices designated strictly as demonstration models with reduced prices for professionals. You need to contact these companies individually. Also, many suppliers of ALDs have “gently used” devices that they may sell or loan an SLP on a long term basis. Furthermore, ALDs have been seen on ebay and Craig’s list, so search wherever you think may be a possibility. When I started working in this area, I would purchase devices on my own, I know this may be difficult in the current economic times, but the reward for your patients is well worth it and I didn’t have eBay way back then!

A note about borrowing: Loaning and borrowing devices between professionals many times is the fastest, most convenient and most economical way to obtain a trial device for your patient evaluation. Unfortunately, this does not always work out to the advantage of the one making the loan and some professionals may choose not to loan their devices. This is a shame as in most case problems can be avoided if the loaner provides a list of instructions on where and how the device can be used as well as providing the last possible day it must be returned. I loan many devices and when I provide such a list there are no problems, however, when I get lazy and don’t provide the list, there invariably are difficulties. Please be a courteous when borrowing. Always return the device, without the loaner having to “hunt you down”. Return the device in the same condition you received it. Be sure to come to an understanding about the batteries prior to borrowing. Courtesy would dictate minimally to provide functioning 9 volt batteries upon return or at least a request to provide them. Keep the ALD in your possession and in a safe place at all times, unless some other prearrangement has occurred with the individual who is providing you the loaner devices.

The selection of devices you use for your introductory session should include both intra- and extra-oral device selections and minimally a device that can function as both. If the devices are not only going to be used with laryngectomees but with other populations as well, one should be sure to consider purchasing a device which has alternate activation switches and is easily mounted either externally or on the head. The Cooper-Rand and Just-Talk device are two such examples. Additionally, the Cooper-Rand may be one of the easiest and least expensive used devices to find. The different activation equipment would most likely be necessary to purchase.

Now that you have at least three devices to work with, the next step the SLP needs to do to ensure the patient has ample knowledge to make an informed decision regarding the use of a device is that the SLP MUST be able to use each of the devices. This is the step I see most overlooked. If the SLP is not able to communicate with the device during demonstration, it doesn’t bode well for patient success. The SLP should try to practice with their colleagues or minimally train while tape-recording and analyzing their own abilities.

Discussing the differences in the devices with the patient is important to improve their knowledge for choosing a device but beyond the scope of this article. However, do keep this discussion complete, albeit brief, in this initial evaluation.

The patient’s ability to use the device probably plays the principal role in successful acceptance of patient use. How to accomplish this is discussed in the aforementioned referenced articles, however, the preliminaries as previously discussed in this article are also quite necessary.

For those patients who do well with the device in the initial meeting, the acceptance of the use of the device has generally been made for them as they have now communicated vocally for the first time since surgery. Therefore, it is most important to allow communication to occur spontaneously. Even the most reluctant patient, will respond to the following scenario: What do you want to tell this person setting next to you? More times than not, the patient response is “I love you”. This is something that needs to be expressed and heard at this new difficult time in one’s life.

Many times despite all the best efforts, the patient may not do well with the device during this first trial despite adequate articulatory skills. Should the decision be made to abandon the trial at this time of the initial session, the SLP should be reminded to revisit the trial every visit during the next several visits with the patient. Poor use usually does not constitute terminating the ALD evaluation and use process but may, with a patient who is already reluctant about its use.

Aimed with knowledge and at least partial ability, the patient is now able to actively participate in choosing which device they want to order. This decision is based on many factors which again are beyond the scope of this article. However, when the patient, with both family and SLP input, is actively involved in the choice of the device, this is an empowering step toward communicative rehabilitation.

One last point regarding encouraging the patient’s accepted use of the device is to remember to point out all the obvious advantages to being able to communicate “now”, and that this vocal communication which the ALD provides is the only practical way to communicate on the telephone and to communicate with those who cannot read, such as grandchildren. (The later is obviously is a huge motivator for many).

For those who remain skeptical, I play a DVD of one of my own patients speaking with an ALD about the ALD. The patient is a good, if not excellent, ALD user. He discusses the fact that he really didn’t want to use the device and then he points out all the faults or disadvantages of the ALD. However, he provides probably the best lesson on ALD use. He ends his brief ALD discussion with “It sure does beat the “h….” out of not communicating at all”. A point very well taken and directly from the source!

There are several other refresher points that I wanted to include in this article but due to length restraints, those will be addressed in a future article. However, I will take this opportunity to request some information from our readers so I may publish the information in that upcoming article.

Many states actually provide free or reduced price ALDs which may or may not be based on one’s income. This service, if available in a particular state, is almost always provided through the same agency that provides the telephone relay service equipment used for the hearing impaired. At a recent ALD talk to SLPs, less than 5% of the audience knew about this available service within their own state, let alone the surrounding states, which if you are close to a bordering state is important information to be able to provide your patient.

The available equipment and functionality varies greatly from state to state and there are probably more states that do not provide any ALD equipment. There is at least one state that actually provides a choice of ALDs. While other states such as my own state of Florida provides only a variation on the TruTone, called the “TelliTalk”. The TelliTalk device is a TruTone is all aspects with one exception, the power source is the telephone and the device can only be used while using telephone and a land line based telephone at that. And therefore the device is not portable/mobile. Nevertheless, it does provide usefulness for many individuals.

Some of the information I would like to provide in the future ALD article is a list of the various states that provide some form of ALD. If you have this information for your state, please email the specifics so all may share this information. I would like to have information such as the ALD(s) available and contact information such as telephone number and even more importantly a website address if available. Of course you can provide any additional information that may assist the use of such service. Please email the information directly to me at lisaproper@gmail.com.

The other request I have for the reader is for those SLPs who have been actively working with ALDS for several years and may have recently just heard a new “tidbit” regarding the ALD device or its use. I would love to hear your “tidbit” and hopefully will be able to share it with others in a future article.

[In this section of WebWhispers http://webwhispers.org/library/Electrolarynx.asp is a partial chart of states that have some provisions for supplying electrolarynx equipment. There is also a link to the IAL section that has some information. M.Ed.]

 


 

 


 

FROM ME TO YOU (Part 5)

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.
I’m Only Sleeping
(Lying there and staring at the ceiling waiting for a sleepy feeling)

The heat in the ward seemed to be getting worse. Everywhere I looked, patients had jugs of iced water on their bedside tables and cabinets. I would have killed for one. I managed to get the attention of a nurse and asked if it was possible that I could have one.

“Hold on” she said, “I will make some enquiries”. She left my bed and went into what looked like an office at the end of the ward, returning a few minutes later. “No Mr Burton, I have just read your notes and you are nil by mouth until midnight”.

My heart sunk, looking at the clock on the wall, it was only 7.00pm. The last liquid I had was at 7.45 that morning and the thought of having to wait another five hours before I could have a drink of any kind beggared belief.

“Why is this then?” I enquired. “Well you had a tube put down your throat during your operation and the doctors need to make sure that no damage was done during the surgery”

“Ok” if I can’t have a drink can I have a fan to keep myself cool then please?”

“The ward does not have a fan of its own, but I will go off and see if I can pinch one from somewhere else” and she disappeared towards the exit.

It was about half an hour later, but she returned with a fan that stood on a four foot high stand. I didn’t care; I just wanted it to work, which after a short hunt for an available plug socket, it duly did. Still thirsty, I lay on my bed feeling the warm draft of air on my face. After about an hour or so had passed a bed was wheeled into the ward and a new patient placed in the vacant space next to mine. After getting the new arrival’s bed into position, the fan, which up to now I had been enjoying, was re-directed to the new kid on the block’s bed.

“You don’t mind, do you?” said one of the male nurses attending to him.

Looking at the state the chap appeared to be in, I didn’t have the heart to say no, so the warm airflow changed direction in his favour.

Time went by ever so slowly, helped by the fact that I found myself looking at the clock more and more often. The official visiting time on the ward was from five pm until eight pm. I was not expecting Susie as I was only in for the one night, so I spent most of the time, ‘people watching’. I did not see one visitor use the hand gel applicator on the wall as they entered or left despite the large notice above indicating the reasons why they should to do it. So much for keeping MRSA at bay I thought to myself. Some people arriving would sit on the bedside chair and put their feet on the patient’s bed. The last visitor did not leave until 8.30 pm. The nurses saw all of this but ignored it. Visiting time was now over although it didn’t help keep my mind off my thirst one bit. There was a point when a chap located a couple of beds down went to the toilet at the end of the ward, and it was with considerable restraint that I didn’t go and take a big drink out of the jug of cold water he had left on his table.

Around about 8.45 pm a young male nurse entered the ward pushing a trolley. “Tea or Coffee” he said to the chap in the first bed he arrived. And so it went on delivering their requests, until he arrived at my bed and that of chap with the fan on him. He was still asleep and so this left me who was desperate to have either.

“Tea or coffee?” he said. “No, I am nil by mouth until midnight.” “Oh sorry”, he replied and walked off with the trolley of goodies, much to my dismay.

I waited until 10.30 and in shear desperation I got out of bed and approached a nurse. “Hi, my name’s Burton. I am in the bed at the end of the ward, turning at the same time pointing at the only empty one.” Pleading my case to the full, I explained that it was 7.45 am since my last drink and that although I was not allowed any fluids until midnight because of the tube could she not bend the rules just a little bit for me? The nurse smiled. “Hang on, let me look at your notes. What was your name again?” “Burton” I said hopefully. The nurse disappeared into the room and reappeared not much more than a minute later. “Whoever told you that made a complete cock-up! You are not allowed solids until midnight but you could have had fluids a couple of hours after your surgery. Go back to your bed and I will bring you a jug of water.”

I returned to my bed and looked into my cupboard, locating the bottle of concentrated orange juice squash that Susie had packed for me. At the same time, I was trying to remember what the young lady looked like who told me that I was nil by mouth on fluids until midnight, because I had several ideas of what I was going to do to her, none of them pleasant. Even the surgeon’s punishment would be a cake walk compared to what I was planning. What was her name? What did she look like? These questions kept going through my mind continually. I was hot, thirsty and not a happy person at all; then to add insult to injury I remembered that I had also turned down tea or coffee as well! The nurse looked like a vision of loveliness as she approached with the promised jug of iced water.

“Thank you” I said and I proceeded to pour and drink two smallish plastic cups full in quick succession, ignoring the bottle of squash that I had put on the top of my bedside table, awaiting the water’s arrival. “Not so fast Mr Burton.” “Sorry” I said, “you’ve got absolutely no idea how much I needed that and how good that tasted.”

Over the next hour or so I finished not only that jug but two thirds of another plus half of the orange juice concentrate. The guy next door was still out of it with his fan. Laying down on this still stifling hot night to try and get some sleep on the plastic coated mattress was proving to be difficult and I spent most of it waiting for a yawn to manifest itself. By the time the hospital breakfast trolley arrived I had probably less than three hours sleep. I could also have eaten anything, I felt that hungry. Unfortunately, I and the other patients were limited to the UK NHS norm of bread and butter with jam or marmalade or a choice of cereals and milk. I chose the bread and butter with marmalade option but with two cups of tea to wash it down. After the breakfast things had been cleared, my Surgeon and a slightly smaller posse arrived which included the ward sister and a nurse.

“Did you understand what I had to say to you yesterday evening, Mr Burton?” “Yes” I replied. “Did Mr Burton have breakfast this morning?” I said “yes” but his head was swinging from side to side looking for a positive response from somebody else, which was finally given to him by a nurse. “Fine, you can go as soon as you are ready. I will be in touch with you shortly. Is your wife coming to collect you?”

“Yes” I said and as he and his ensemble disappeared. I phoned Susie to pick me up and got washed, dressed and packed my overnight bag in readiness.

I proceeded to re-read the newspaper that I could not concentrate on yesterday. Having glanced through the pages and seeing nothing of interest in yesterday’s news I came to the crossword puzzle. After about ten minutes I had read all of the clues and knew none of the answers. My brain felt like it was scrambled; I could not think straight at all. Only then did it occur to me just how powerful the anaesthetic for the surgery was; maybe it was just through general lack of sleep or a mixture of the two? I got up from the bed and sat in the chair beside it. Did I really fully understand everything that the Surgeon had said the previous evening? Failure to understand and answer simple crossword clues was putting doubt in my mind.

My attention now turned to Susie. What was I going to tell her? No time for pride anymore I thought to myself, just the truth. Discarding yesterday’s newspaper in the bin I sat down to try and formulate a game plan. Getting the first sentence right was already proving difficult. I had three opening lines going on in my head. Sometimes I would remember them one by one, none of them seeming suitable in their own right. Sometimes a couple or maybe all three would in some way jumble themselves up. It seemed the harder I tried, the worse it seemed to get. Oh hell! What a mess I am in, I thought.

A nurse arrived with a package. “Here you are, Mr Burton, some medication to take home with you” I was not expecting this but took the bag that she had collected from the pharmacy and inspected its contents. As I did so, the nurse explained what was in the bag and that I should be following the instructions as directed on the labels. I understood that at least, maybe my brain was improving after all.

Susie arrived. I stood up and made my way towards her, saying goodbye to those nurses who were there at the time.

“Hi love”, a quick kiss exchanged, we left the ward, building and made our way to the car park.
“Are the boys ok?” I enquired. “Yeah fine” was the reply, but the statement was made in a decidedly frosty manner.

Bollocks, I thought. After over twenty odd years of marriage I could always tell when Susie was unhappy and I had not even given her any bad news yet! So I decided to employ the usual cowardly way that had got me through thus far if I knew I was up the creek without a paddle. This ploy being clam up and say sod all unless asked. Then, I nearly got brave and thought to myself, I have the illness not her, what are you man or mouse? Knowing the mood Susie would was in I didn’t want to ask her to pass the cheese! So in my own interest I stuck with my original plan and remained passive. Susie may be only 5ft 4ins tall, but she is no woman to be messed with at any time, let alone when I know she is in a mood or upset.

We were in the car about a mile out from the hospital listening to the radio and nothing so far had been said. The atmosphere could have been cut with a knife.

Susie broke the ice. “So what did they say then?” I sensed aggression in Susie’s tone which had probably been caused by my refusal to offer any information willingly. I thought to myself, tell her the truth, mate, there’s no point in putting it off.

“The Doctor said that the growth has infected my voice- box and that they will have to remove it, apparently this is major surgery, love” I said almost sheepishly.

“Oh, I see.” She replied. I didn’t know what to say next although in fairness Susie now knew as much as I did. All we could do was to sit and wait.

Life carried on pretty much as normal, if you could say that. I could not find any work, although with so much going on in my head I probably would not have been capable of holding down a job if I was offered one. Susie decided that with no work for me on the horizon, and since I was at home, the hall needed re-decorating. I had stopped smoking with the aid of patches obtained from my local GP. I also found that decorating the hall was taking my mind of off most things, especially cigarettes. I didn’t realise how many doors there were in our hall until the time came to paint them. In hindsight the cancer must have been taking a real grip because I didn’t really fancy a fag at all. The Surgeon had told me to pack it in but this was irrelevant. I still wore the patches, god knows why; maybe I was getting addicted to them instead!

To be continued...Next Month..."In My Life"
 

 

 

 

 

Laryngectomee Father/Laryngectomee Daughter

 

 

I was asked to share my thoughts about being a lary after having a father who had a laryngectomy and how this affected me pre and post-op. Thinking about how to write it sent me down an old, old path and forced me to face many of my own failings as a caretaker to my father. He died five years ago but not from the cancer. I think life just got to be too much for him. So here is our story and my apology to my father and others to whom I have been less than accepting or to whom I acted as though I were superior.

My father, John, was an old fashioned Irishman, with all of the stereotypes associated to that heritage. He was a second generation first son, with six siblings raised in a one bedroom house in South Dakota. His father was as tough as they come! John worked three jobs to support the family and had a work ethic that was tough to match. He won a scholarship to Marquette in journalism but turned it down because his family needed any money he could make.

So John went on the road and sold as only an Irishman can. In his travels, he met a beautiful redhead, fell in love, and they married. A more mismatched pair would be difficult to find! Kay was an only child of a doctor who, after divorcing her mother, spent the rest of his life spoiling her. Her mother took in boarders to get Kay the things she wanted and her father lavished her with extreme gifts. How many young girls in the '30s had fur coats?

Both of my parents were very good looking, almost movie star perfect and Kay believed that John would take care of her as she had been accustomed to. He entered the Air Force days after I was born and he was never forgiven for that. After he returned home safely, the family grew to five children. Problem was that no matter how much money John made, it was not adequate to meet Kay’s expectations and their relationship suffered greatly. They both already smoked, John always smoked Camels, no filters and Kay chained smoked Salems. The stress of five children, and the need to accept that their dreams would not be what they had hoped for, diminished them until they both started to drink and spousal abuse often occurred after heavy drinking. Yet everyone loved them!

I became estranged from my mother. I loved her but didn't like her and would not have wanted her in my bridge club if you understand what I am saying. I was close to my father. We were both readers, highly verbal, had wicked tongues, and frequently left the rest of the family out of our relationship. I was the only one to go to college he was so proud! I became a nurse with a degree, quite rare at that time. Being the overachiever that most children of alcoholics are, I just kept pushing. My first marriage fell apart because just like the literature, I married a man who was abusive. My second marriage has saved my life (and Dad’s) several times.

One day my father called me to say that he had cancer of the vocal cords and what should he do? He had none of the traditional symptoms but his PCP referred him to the VA hospital in Iowa City that had a relationship with University Hospitals. I begged him to get a second opinion, to consider radiation, not to just blindly follow what the doctor said but he was of that generation where you did exactly what the doctor told you to do. To this day I believe he could have kept his voice longer if had been aggressive in seeking second opinions. And of course I was such a pain in the ass being Florence Nightingale in disguise! I rushed to his side prior to the surgery. When I heard my mother (who was carrying a vodka bottle in her purse) say that John deserved to lose his voice for all the bad things he had said to her over the years, my heart turned to a cold, cold, stone. I had difficulty being supportive to her but in retrospect I see that it was her way to express her anger and sorrow. And here was I, Miss "Smart Ass", making judgments about a relationship between two people who had been together for 35 years at that time.

John was fortunate. There was a hot shot young surgeon, Dr. Pangie, who was working on voice restoration 30 years ago. He created some sort of a slit in John’s common wall that would allow him to talk when he occluded the stoma. At that time it was a miracle. And there was no InHealth, Provox, Jim Lauder, filters, or housings, just an open stoma. Dr. Pangie took Dad on the road which was the delight of his life. My Irish dad loved to show off. But then he stopped. I suspect it had something to do with the fact that the only place he was accepted was at Pangie seminars and he had to figure out how to return to work. Well, that was never to be.

John had been an excellent cook. All the Irish bars would ask him to cater events. When he lost his sense of smell, his cooking suffered and Kay was no help. She was deep into despair and booze starting with her soda being spiked first thing in the morning. We tried everything including admitting her to a detox center from which my father "rescued" her 5 days later. So all the siblings gave up but "Florence". I lectured, I sent meal planners, I talked about AA, and the response was nothing. So finally I, too, withdrew.

Then suddenly Kay died of colon cancer. And John was furious! He was suppose to be the first to go! How could she do this to him? What would happen to him? Against whom could he strike out and have them accept it?

After the funeral, the siblings gathered around the kitchen table to discuss what to do next. Some of us were in better financial situations to assist. So the task, which we accepted, fell to my sister and me, who both lived in the metro area of Minneapolis/St. Paul Minn. Dad lived in Iowa. We moved him and made adjustments to both our homes that included installing new bathrooms on the first floor. And since he was difficult, we agreed to give ourselves a break and have him split his time between our homes. That way he could also have a break, see grandchildren, and have a change in environment.

By this time I was no longer Nurse Ratched, I was a hurting daughter not knowing how to help. His drinking increased to proportions only an Irishman can tolerate and be proud of it at the same time. Since my husband and I both worked, he was alone most of the day.

We tried to get him out (by this time he had a walker). He didn’t have the advantages we do now of prosthesis, filters, and covers and his coughing would disrupt a room full of people. He never learned to accept that he could not eat and talk at the same time but used hand gestures that were funny at home but very inappropriate in public. I am ashamed that I was embarrassed by him and now I am proud of how he looked back at everyone with a stare that only a defiant, proud person could produce.

Finally after a number of incidences such as: he forgot he had put chicken wings in the oven, he broke a chair and tried to hide it under the porch, and finally fell outside from drinking too much, we accepted that we were not capable of taking care of him. My dear, dear husband and my sister found an excellent nursing home just 3 blocks from our house. And this is when my husband became a saint. He visited every day, taking the newspaper, buying books with large type, and trying to talk with him. John was failing fast mentally and physically. Although he never said it, he was very angry with all of us for putting him in a nursing home.

I had to move to accept a new job and my poor sister got stuck alone with what we use to share in terms of caring for him. It was a very rough year for all of us. He had come to love my husband more than us (even though in the beginning he never approved of a second marriage, you know, that Catholic thing). And when we moved and he could no longer walk the 3 blocks to see us, although my sister and her husband drove miles and miles to check on him and frequently took him home, he just kind of gave up. I flew back from Philly many times having been told that he was dying. Well, he was, but as usual on his terms.

Fast forward 20 years, I had always had a hoarse voice that most people said was "sexy" and I really didn’t pay much attention to it until I lost it. At that time the treatment was to strip the vocal cords, a procedure I had done about 5 times. By then, I had a persistent ear ache, voice was gone, had a misdiagnosis, no relief, another doctor, and was told it was stage 4 cancer. Because I had been in health care I was fortunate to get a referral to MD Anderson almost immediately. Dr. Ghelpert saved my life. Jan Lewin gave me my voice back.

I am almost 2 years post op. And I think so often of how embarrassed I was of my fathers attempts at assimilating back into the main stream. And how I held such high standards for him, standards that no one could meet. So how has this affected me and my recovery? Dramatically.

First of all, I was frightened that I would sound like him (and to me I did for the first few months so I just didn’t talk). I have had to accept that both of us smoked and this is the result. (My mother also had cancer of the tongue and cancer of the colon). I was highly verbal, as my father was, and I miss that. I also have had trouble finding employment in my field of health care consulting, just as Dad did in his area of cooking.

I am so afraid that my grown children will be ashamed and embarrassed by me as I was by my father. I am sure they have bad memories of their grandfather struggling for acceptance and don’t want to see a repeat with their own mother, so email saves us. I have a support system my father had only infrequently and that is my husband. My husband is all accepting, creative about my needs in ways of wardrobe, pressure bands, etc. And thanks to Dr. Lewin he is as knowledgeable about larys and equipment as any SLP student.

I sought the help of mental health professionals to help me cross that river of depression, something my father would never do (I think it was a testosterone and generational thing.)

I am not as accepting of what I am told by health care professionals as my father was I have the advantage of the computer, can do research, have WebWhispers, and have the encouragement of the MD Anderson staff to take as much responsibility as possible for my own care. They have taught us well.

I am impatient with young professionals that act as I did, with a "know it all" attitude and their sense of impatience. I want to shake them and say, "been there, done that…and DON"T!"

I not perfect, but I am expanding my capacity for acceptance of others with their differences, being less judgmental, affirming my gratitude and love for those around me that have helped and continue to help (including my wonderful pets). I have a responsibility because I am still alive, to help others and that help should not be limited to the lary community.

If I need to reinvent myself in order to make a living, I think I can (full of bravado but terrified inside, always waiting for the next shoe to drop). I NEVER in the last 50 years thought I was special. But maybe I am, because of my father and watching him stare down looks in public places, never losing his sense of humor, and wicked tongue. Maybe his example has enabled me to reach out more, to work hard to adjust, and to be proud of him and our heritage. And to forgive both of us…….

Vicki Eorio
(originally published in HeadLines, April 2002)
 

 

 

 

 

Counting My Blessings

 


There has been some “chatter” lately on the WW List about “What I Miss Most”. It is an honest and heartfelt discussion and there is much I also miss. My son and his wife just had their first child, a perfectly beautiful baby girl, on March 16. My precious little grand-daughter is the new love of my life and I miss that I cannot read to her nor sing silly little songs quite the way I used to for her Daddy. However, I must say, I bit the bullet the other night, and read to her from one of my old favorite books and once I got the hang of juggling a newborn, a book and my Servox, she seemed to enjoy the experience! My kitties were enthralled- I don’t usually talk aloud when we are alone- so they gathered at my feet with that curiously intent look only cat lovers know and I had a quite an audience for Kayleigh Elizabeth’s introduction to “The Friendly Book”.


I am thinking that Baby Kayleigh will grow up thinking that it is perfectly normal for some Grammies to sound like this and I even got one of those funny vague newborn baby smiles when I buzzed her belly with my Servox. I KNOW it was probably just gas, but indulge me.


So as much as I miss my old voice- what a great story-telling voice it was- it could be worse. I have special plans for special times with my grand-daughter and her future siblings. My father, who just turned 84 is absolutely dotty about his great-grand-daughter and after a generation of only grand-sons, he is thrilled to have a McGary girl. Dad said today, “I just hope I live long enough that she will have real memories of me after I am gone.” Family get-togethers have evolved into a finely choreographed dance of who gets to the hold the baby now!


So, what I miss most is- for us McGarys- nothing at all. But we are the fortunate ones.


Some of you may recall that in the past I have written about my friend, Georgine, who is locked in a battle with Alzheimer’s Disease. She has been here in Maine for the last 6 weeks, with her son and daughter-in-law and we have spent a lot of time together. She requires more care these days and even 3 or 4 hours at a time is taxing. There are moments of simple joy- washing her face with a warm wash cloth or rubbing lotion on her back after a shower- she is so appreciative. There are also extremely trying moments- getting her up and dressed- answering the same questions over and over and over again.


But, somewhere, safely tucked away from the ravages of Alzheimer’s in the recesses of her mind, is the “Grammie Touch”. Georgine is transformed around little Kayleigh. She remembers her name, if not her age, and has spent more than one afternoon rocking and crooning and soothing the babe. She may not remember where she lives these days, but she still knows how to comfort a cranky infant and it is only with great reluctance she gives her back to the mother. I have absolutely NO face time with my grand-daughter when Georgine visits. She is transported back to an easier, sweeter, more joyful time.


As much as Georgine loves her visits with Kayleigh, she cannot always remember much about her own grand-daughters, now all young women, and will probably forget Kayleigh soon. In all likelihood, Kayleigh will not remember Georgine when she grows up.


As much as I miss my voice and a few other things like diving into the ocean and not always having to plan my outfits around scarves and neckwear, I still can remember all this. I can still celebrate the circle of life as my Dad holds his great- grand-daughter while he watches the Red Sox whup the Yankees- even if his yells wake her up a bit- she settles down again quite nicely in Grampa’s arms.


In the grand scheme of things, it is not what we lose, but what we are able to hang onto that count.

 

 

 

 

 

“Are We There Yet?”

 

 

Anybody who has traveled with children has heard this question many times. When I hear laryngectomees ask, “How long did it take you to learn esophageal speech?”, “How long did you use the electro larynx?” or “How long before you could eat real food?” I am reminded of the times I had to answer the familiar question from my children, “Are we there yet?”; meaning, how long will this trip take? Both are relative.

When children are young, every stop seems like the final destination in their minds. This journey may cover new territory for them so they have no real concept of what to expect. The car stopped, “Are we there yet?” Having a trip plan, a map and some landmarks seem to help them get from A to B. Laryngectomees face the same sort of unknown rehabilitation journey post op. Even though I had better than average pre op counseling, I felt as lost and just as overwhelmed as many tell us they are today. This sense of “feeling my own way” went on for quite awhile as I found the help I needed to get through the maze of new encounters. Things you were told would, or would not, happen seldom go as planned or anticipated. How many trips encounter detours, flat tires, or cancelled flights? We learn to ask questions and resolve the delay one way or another.

I was told I wouldn’t need radiation post op because of the spindle cell sarcoma. As it turned out, I was advised to undergo a full course of radiation due to the three surgeries on the same site by three different doctors in two different hospitals. Then I was told by the first radiologist that he wouldn’t treat me because it would paralyze me from the neck down. My Mayo Clinic ENT convinced this local doctor that it would be best if he had his associate take over my therapy after I signed a waiver. The radiation treatments and cumulative burn was a detour that delayed my speech therapy, and wiped out the last of my normal thyroid function.

I thought I would skip using the electro larynx, and go straight to esophageal speech since that was my goal. Little did I know then that the right lobe of my thyroid had been removed with my larynx, and the radiation I submitted to fried the left lobe of my thyroid so I ended up “grossly hypo-thyroid” two years later. An Endocrinologist diagnosed this problem when it appeared I had a recurrence of spindle cell sarcoma in my brain. I had classic hypo-thyroidism symptoms, but when I got lost driving home in my own neighborhood, we were all alarmed enough to hospitalize me for days of testing to rule out the worst fears. Asking” how long it will take” to learn esophageal speech was a useless question. There was no answer at that time. The electro larynx was my means of speech awhile longer. It took several weeks to see the beginning of “normal” in my energy, weight, and lifestyle at home. In three months I was able to speak esophageally, but using it on the telephone was still a terrifying challenge I had to master.

When my family traveled it didn’t matter whether we stopped for a meal, gas, or in a rest area to stretch, refresh, and walk the dog, the youngest members had to know “are we there yet”? Then they had to know where the next leg of the journey would take us. It didn’t matter if it was a camping trip, or a visit to a nearby relative, the question was the same. After awhile we had some recognizable landmarks for them to watch for as we covered familiar ground on our way. As our family grew from 5 to 6 children, and the oldest three teenage boys were all about 6 ft tall, space was a concern. Often my father and mother in-law would go with us, so we traveled in two cars. Every stop would allow us to rotate drivers, seating, and cars to keep the peace and share the leg room equally. We have good memories of touring more than twenty states, camping along the way for about a month at a time. We liked to strike out in a new direction, but sometimes we needed to settle into a favorite spot just to relax. I found rustic camping in Wisconsin for three weeks a practical solution for keeping the house we were selling in perfect shape for the realtor to show, in our absence, one summer. I literally backed out of the house using the vacuum before I locked the doors! It worked as a short cut to a goal. The body, too, needs plenty of time to get itself in order.

There are similarities between planning an excursion for a large family and planning for rehabilitation following a total laryngectomy. There has to be a team approach between the parents and the children who are capable of helping more each year as they grow and learn many skills. Daily training for personal hygiene and responsibility for their belongings is a good place to start the process. It helps if they learn basic cooking at home and camping, how to pitch a tent and take it down, bait the fishhook themselves, handle a canoe safely, drive a car responsibly, and so on. My point is there is a long list of little things that must be mastered before they become less of a chore and less time consuming. The goal is to make it a simple routine that can almost be put on automatic pilot. Laryngectomees also need to begin to care for themselves as much as possible when they are able.

Lucky is the laryngectomee who has a group of medical professionals that practice the team approach to total rehabilitation with their patients. It can make all the difference in the world for our outlook and final outcome. Without that network many of us do fall through the cracks, and miss important information and help that leave some believing they are on their own for years. Care givers end up doing tasks the laryngectomees would do well to handle for themselves everyday. Some are not given any information about local support like a New Voice Club, or Head & Neck Cancer (SPOHNC) groups, the International Association of Laryngectomees, or WebWhispers. Most will agree that help from peers who have been down the same trail makes a huge difference. It is so important to know they are “not the only ones”. In reality, there may not be a support group near them so they miss the opportunity to meet another laryngectomee face to face. At some point it takes more than reading about what it’s like and what to do. There is a real desire to see and hear how another laryngectomee manages to compensate for so many changes. If you are so inclined perhaps you are the one to start a small support group to help the new laryngectomees in your area. It is not hard to do, and there is a manual available from the IAL on their website and in their new “club kits” to help you build a club.

The only commonalities we share are the removal of the larynx and the stoma we now have to learn to live with and care for. Beyond those two surgical changes there is little else that is the same. To begin with we have different skin and healing ability. Some may be diabetic. We have had different kinds of cancer that require different approaches. We may have had radiation pre-op. We may have gone the piece by piece method, and ended up with a total laryngectomy later. We may have scar tissue issues to deal with. We may have reconstruction added to our healing time

“Are we there yet?” Which leg of the journey are we referring to? How long will it take to learn to swallow, to get rid of the nasal gastric feeding tube or abdominal peg, to eat soft food again, to speak, to go back to work, to wash your own hair, or to swim and boat again? You know “that you’re there” when you are able to resume your activities close to where you were before your life was interrupted. Where to next?

Elizabeth Finchem
 

 

 

 


 

The Creative Process Itself Becoming the Subject of Art.

 

 

Time and time again I find myself facing a blank page feeling as if I have never created anything before – everything starts from zero.

Then I look around and become aware of little miracles happening in the studio's space; the incoming light transforms banal objects into suddenly amazing points of interest. The walls turn into screens on which shadows create unexpected scenes full of movement and beauty changing constantly in front of my eyes. A whole new fantastic world comes into life.

I perceive the space and my presence in it, my body in front of and in touch with the works created, as if from above or from the side. I do everything simultaneously: I draw, I hang papers on the wall and covering the window with brown paper, I cut a small window in this cover. I move objects from light to shadow and vice versa; I change points of view and I photograph.

The photographs I take, on one hand, document a studio situation and record the creative process and on the other hand become independent objects of art standing for themselves.

 

     
     
     
     
     

 

 

 

 

From the Editors


Back in February when we learned the sad news of Rosalie Macrae’ passing, we received the following letter from her dear friend and fellow WW member, Mairaid Sweek. She thought we might like to publish it as a last example of Rosalie’s wonderfully witty writing. We loved the idea and think it is a terrific way to remember her. As a matter of fact, we liked the idea so much, we are putting out the word- if anyone else has some “Rosalisms” they would like to share, please let us know at editors@webwhispers.org so we include them in this- her column- in the future. We will also be reprinting some of our favorite columns from the past few years. New readers are in for a treat and for the rest of us it will be a time to laugh and cry again with the incomparable Rosalie.

 

Donna and Pat

 

Perhaps some of WW readers will not be familiar with the strong traditions and protocol of "Taking English Afternoon Tea" (And apologies for describing it in a bit more detail).

It is not a question of popping in anywhere for a "quick cuppa"
It is an occasion - indeed almost a ritual.
The restaurant will normally be quite "posh" (high end) and all tables covered in starched white tablecloths and with individual starched napkins(serviettes)
Waiters will be suitably attired and very polite and attentive.
The tea will come in a bone china teapot with china teacups and saucers and with a china jug of milk(cream) and a bowl of sugar cubes(with little tongs to pick up the cubes(lumps)

Sandwiches are always dainty and sometimes with crust removed. Typical fillings would be salmon and cucumber, Egg and cress, sardines and tomato. They would be cut into triangles and garnished with more cress.

These would be followed by a mouthwatering selection of cakes, usually scones with fresh cream and jam(jelly),chocolate éclairs, strawberry flan, and cream slices(puff pastry layers of cream and jam) and a choice of cheesecakes

Sorry Donna - got a bit carried away there. Think I was picturing Rosalie and her friend in these elegant surroundings - and a very disappointing experience.

But, Rosalie's gift was to see humour in most situations and turn it into a wonderful narrative.
I'm guessing it took the customer services personnel some time to decide if the letter was a complaint - or not!!!
Anyway - here it is (You might want to take out the restaurant name Fine Company)


Mairaid Sweek

 

……………By contrast, I will let you read my letter to the place where I took Lee yesterday on his belated birthday lunch. NOT a Valentine's. Really sad this Rosalie confession. It was all about TEA. But it was unbelievable. The Food Company is very grand--one of these iconic places in the middle of nowhere with great things to buy at a price and a gorgeous restaurant on the mezzanine. Read if you can be bothered. I don't usually write letters to restaurants unless they have been really extra good or bad. But this was, as I wrote, surreal.

 




Dear Food Company,


A delicious Sunday lunch today marred by the unbelievable travesty of a 'pot of Darjeeling for two' we asked for. The more I think about it the funnier, more surreal it becomes. Both my friend and myself have had tea all over the world in our respective careers, myself as a journalist; my friend as a professional soldier. I would add that we are in no way tea snobs, and like wine normally with our meals. But sometimes tea is the thing one craves. It was a cold, grey day and a pot of tea was just the thing to go with our Eggs Benedict and Carvery Beef. A surprisingly limited tea choice. No Assam. But never mind.

Well, the pot of tea never materialised. Instead, we had a jug of fairly recently boiled water, untainted by any tea, and a couple of dainty teabags, one each, beside our cups. We poured the water on top. Small cups, tea bags taking up too much space. Put them in the saucer where of course mine dripped on to my blouse. No matter.

When I had finished this hottish brew, warm really, I was still thirsty. As was my friend. Hmm. I didn't complain as this was his delayed birthday present; he did not complain as he thought it would be impolite to me as I was paying. I ordered a second lot of tea, thinking the first had been a mistake. It was difficult for me to explain to the waitress properly as I speak with an electric larynx. But I usually manage in restaurants pretty well and only write down things if it is a complicated order. Tea would not normally come under that category. But it does in the Food Company restaurant, it seems.

The next was the very same. Another jug of boiled (I presume) water, and two more tea bags. In the meantime two delicious helpings of cheesecake had arrived from downstairs. The best ever tasted, and even better if accompanied by some fresh, cleansing tea for the palate. Ha!

By this time the table was not really pretty with a scattering of tea bags and wet drips from the saucers and the sodden giveaway peppermint chocolates . As I say, the service from the waitress was charming. As it was at the till. And in the kitchen--they served the Benedict eggs although they were really only available until noon with the breakfast menu and this was after 1pm.

When we got outside my friend and I exchanged our disbelief at this 'tea ceremony'. And a mirthful exchange it was. Geishas have nothing to fear!
But sadly my friend's brother, arriving for a visit from the US on Wednesday, will not be going to Mark's Tey for a cup of tea (?) or he would really think the old country was losing one of its renowned assets! Or we could try the Harverter's next door, packed with half term children on slides. All part of life's rich tapestry I suppose, but I should have a word with somebody!

Yours sincerely,

Rosalie Miles Macrae

 

 

 

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 43 new members who joined us during April 2009:

 

Phyllis Reardon-Albani
Wakefield, MA

George Allen Baker
Portsmouth, VA

Danny Ayscue
Wendell, NC

     

Darlene Blackburn
Waxahachie, TX

Michael Bone
Monticello, AR

Carol Boyce - (Caregiver)
Ann Arbor, MI

     

Ellis Boyce
Ann Arbor, MI

Molly Ann O'Brien
Fort Lauderdale, FL

Sam Cadwell
Carp Lake, MI

     

Jackie Cola - (Caregiver)
Westerville, OH

Billy Conant
Kingsport, TN

Joseph Cote
East Haven, CT

     

Paula J. Cote - (Caregiver)
East Haven, CT

Barry Cooper
Nanaimo, BC, CAN

Carol Hale
Sacramento, CA

     

Kenneth Hammer
Laguna Hills, CA

Larry Gene Hampton
Jeffersonville, IN

David Jackson
St. Louis, MO

     

David E. Jenkins
Lafayette, LA

Gene Jinkens
Fort Morgan, CO

Lisa M. Lachance - (SLP)
Mission Viejo, CA

     

Mona Lopez - (Caregiver)
Manila, Phillipines

Nina Mazer
Jamison, PA

Helen Miles - (Caregiver)
Bronx, NY

     

Timothy Mcgee
Marquette, MI

George Munday
Ontario, CAN

Cathy Oliver - (Caregiver)
Avon, IN

     

Mark Oliver
Avon, IN

Sabrina Peek
Nevada, MO

Joanna Polok
Mayfield, Dalkeith, Midlothian, UK

     
William Rose
Samson, W. AUS
Don Roth
Bronx, NY
Jesse Rupp - (Vendor)
Carpenteria, CA
     
Eugene R. Sheldon
San Jose, CA
Kevin Sheridan
Sydney, AUS
Terry L. Shotts
Cowansille, PA
     
Charles G. Smith
W. Oneonta, NY
Glada Spiegler - (Caregiver)
Plantation, FL
Diane Spivey
Whiteville, NC
     
Russell Keith Strickland
White House, TN
David Thomson
Kirkcaldy, Scotland
Elspeth Thomson - (Caregiver)
Kirkcaldy, Scotland
     
Shawn D. Wright
Spokane, WA
   

 

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.
 
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  © 2009 WebWhispers
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