June 2007

 


 

 

Name Of Column Author Title Article Type
News Views Pat Sanders  IAL Annual Meeting& Voice Institute News & Events
News Views Pat Sanders WebWhispers At The IAL News & Events
Voice Points Annette H. May, M.A., CCC-SLP Customizing Voice Prosthesis - Pt 2 Education-Med
Worth Every Penny Lanny Keithley Liar, Liar - Pants On Fire Hints
A Scottish Accent Rosalie Macrae Send In The Clowns Experiences
WebWhispers Columnist Terry Duga Sometimes You Need To Try Again Experiences
From The Farm Bruce Buck Martin How I Got Here - Pt 4 Experiences
Between Friends Donna McGary Lost Experiences
Practically Speaking Elizabeth Finchem Do Men Have Thyroid Experiences
New Members Listing Welcome News & Events

 

 

 

 

THE IAL ANNUAL MEETING & VOICE INSTITUTE

 

This is the time when we look forward to seeing, hearing, and hugging our WebWhispers friends. We know each other well from our correspondence on our lists and in our forum but it is such fun to actually talk face to face. We have a WebWhispers table somewhere near the vendors and you will see most of us there at one time or another. We keep it "manned" most of the time with WW officers and members so stop by and visit us.

 

IAL INFORMATION

 

If you are planning to attend the IAL Annual Meeting or the Voice Institute, you are reaching the time limit on getting your reservations at the good price negotiated by the IAL. It is to be held at the Sheraton Burlington Hotel and Conference Center, in Burlington, Vermont, July 11- 14, 2007. The web site to use for making your arrangements is:
http://www.larynxlink.com/Vermont/
There is also a full schedule posted.

 

For hotel reservations, be sure you let them know you are with the IAL group.
http://www.starwoodmeeting.com/StarGroupsWeb/booking/reservation?id=0610040063&key=1CBFD

 

For AM Registration (for those not attending the VI):
https://web59.mysecureserver.com/larynxlinkcom/Vermont/2007_am.htm

 

On this page, you may register for the VI:
https://web59.mysecureserver.com/larynxlinkcom/Vermont/2007_vi.htm

 

Also, on that page is the information about applying for the Batten Scholarship and this is the application. While the amount of the scholarship doesn't seem to be listed on this page, the application does state. "I understand the Scholarship amount is up to $ 500.00 plus the registration fee.
https://web59.mysecureserver.com/larynxlinkcom/Vermont/2007_BSAP.pdf

 

Both the AM registration and the VI registrations cover the IAL banquet on Saturday night.

 

WEBWHISPERS AT THE IAL

 

If, as a WebWhispers laryngectomee member, you would like to attend the VI, you are also eligible for our own WW scholarship, as follows:
VOICE INSTITUTE PUPIL (VIP), LARYNGECTOMEE TRAINEE (LT) PROJECT
This project is for the purpose of encouraging better laryngectomy rehabilitation education for our members. Informed members can help with improving the flow of information on our WebWhispers email lists and they will be more capable of helping new laryngectomees, improving hospital visitations, and assisting in their local clubs, thereby fulfilling our WebWhispers goals. We firmly believe in the IAL Voice Institute and have set up a program to subsidize the attendance of any WW member attendees at the Voice Institute, which is held in conjunction with the IAL Annual Meeting each year. Registration may be as a Voice Institute Pupil (VIP) or as a Laryngectomee Trainee (LT). Our requirements are that each individual attend the planned classes for that category and, for those who meet those requirements, a grant of $100.00 will be presented at the annual WW banquet (or alternately via mail).

 

No application is necessary, but please inform Terry Duga that you would like to be on the list for our VIP/LT project. See Contact Us at http://webwhispers.org/ for Terry's contact information

 

Terry is also where you send the money or credit card info for the WW Dinner held at the Sheraton on Friday night during the IAL. We must have the names of all attendees being paid for and you may read about this at:
http://webwhispers.org/activities/ww-annual-dinner.asp. There is also a copy of the menu, and it sounds wonderful, and a list of people who have already paid for their WW Dinner reservations.

 

 

FUN EVENT OPEN TO ANYONE


http://lakechamplaincruises.com/daily.htm
Northern Lights cruises in Burlington, VT. Some of us have made reservations for their 1 1/2 hour luncheon cruise sails at 12PM on Wednesday, July 11th. It is $15.95 plus tax ($17.71 each adult ). If you want to go with us, call 802-864-9669, tell them you are part of the WebWhispers group and they will keep track of numbers so they can reserve tables for as many as we need to sit together. (You can also purchase your tickets online...just make a note to seat you with the WebWhispers group). This is not an organized event but just fun for those of us who are there Wednesday and not scheduled for meetings. See you there!
 
Enjoy,
Pat W Sanders
WebWhispers President

 

 

 

 

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

 

 

Prosthetic Devices Following Total Laryngectomy:
One Size Does NOT Fit All

Part Two: Customizing the Voice Prosthesis
Annette H. May, M.A., CCC-SLP
M.D. Anderson Cancer Center Orlando
 
In addition to a growing number of products available to assist in maximizing function and quality of life following laryngectomy, there are now a number of institutions that support customization of prosthetic devices. There are some instances when even the large variety of products available on the market today cannot provide a solution. In this case, if a clinician has the appropriate training and support of the employing institution, some standard devices can be customized to fit a patient’s needs or, often times, an entire customized prosthetic device may be constructed. When a device is customized, only medical grade materials considered safe for use in close proximity to the airway should be used. Insertion and removal methods may differ depending upon the type of prosthesis and individual patient needs.

 

Suggestions for Customizing are as follows:

 

Standard tracheoesophageal prosthesis customized with enlarged esophageal and/or tracheal flange(s):

 

In the case of dilation of the puncture tract, where leakage occurs around the prosthesis, customization may be considered. Factors that could predispose a patient to this type of dilation may include radiation necrosis/fibrosis, diabetes, recurrent disease, metastatic disease, new primary cancer, immunosuppression, malnutrition, trauma, or infection. With this type of dilation, in the case of a patient with poor tissue quality, the goal is to provide a snug fit to eliminate any piston-like movement and create a seal to prevent fluids or saliva from leaking around the prosthesis without placing the patient at risk of further dilation. Common methods to achieve this goal may include resizing the TEP to ensure appropriate length, use of a prosthesis with a standard enlarged esophageal flange, downsizing the diameter of the tract with smaller stents, or cauterization of the tract to promote stenosis.

 

When the more common methods are not effective, often the only alternative to customization would be a complex surgical procedure to close the defect. In this case, customization would typically be preferred by both the patient and the surgeon. If customization is required, a standard voice prosthesis may be altered by adhering an enlarged esophageal and/or tracheal flange. Enlarged flanges may be different sizes, different thicknesses and may be round or elliptical. This type of custom prosthesis may be manufactured by a well trained speech pathologist or prosthodontist following appropriate evaluation by an experienced clinician. In some cases, the patient will permanently require a device with custom flanges. In other cases, the dilated tissue may heal and the patient may return to a standard voice prosthesis. Risks of use of this type of device may include aspiration of the tracheal flange if not adhered appropriately, esophageal or bowel obstruction if the prosthesis is dislodged or removed posteriorly, and/or trauma to the trachea or esophagus. Trauma may occur during placement or removal, or even once in-situ if the enlarged flange is not sized appropriately. A flange may be large enough to eliminate leakage, but too large to rest comfortably within the trachea or esophagus without irritation to the tissue.

 

Custom length tracheoesophageal prosthesis:

 

When the tracheoesophageal party wall is too thin to accommodate even the smallest 4mm standard prosthesis, customization may be indicated. A standard prosthesis may be shortened by a well trained speech pathologist or prosthodontist following appropriate evaluation. A prosthodontist may also fabricate a custom length prosthesis using molds when required measurements are provided through appropriate evaluation by an experienced speech pathologist. These custom length prostheses often also require enlarged flanges as thin party walls are often dilated.

 

Custom dummy tracheoesophageal prosthesis:

 

A custom dummy tracheoesophageal prosthesis may be indicated when leakage through the prosthesis cannot be controlled with standard methods/devices. This type of prosthesis may also be indicated when the patient has a non-functional TE voice, but the TEP will not close with standard methods. There are standard dummy prostheses available on the market, but these are limited in size and diameter and may not always be effective. The valve of a standard prosthesis may be sealed by a well trained speech pathologist or prosthodontist to create a “dummy prosthesis”. A custom obturator may be fashioned in conjunction with a prosthodontist to “plug” the TEP. As is the case with a custom shortened prosthesis, dummy prostheses are often used in combination with enlarged flange(s) to prevent leakage around the prosthesis.

 

Custom peristomal housings:

 

Peristomal housings and stoma buttons may be customized when a patient needs to use an HME or hands-free valve, but cannot accommodate such a device with standard housings or intraluminal devices. A patient with prominent sternocleidomastoids, a deep-set stoma, or irregularly shaped peristomal area is at risk of problems maintaining a seal with a standard peristomal attachment.

 

Custom stoma buttons:

 

A patient with an irregular shaped stoma, a deep-set stoma, an irregularly shaped peristomal area, or without a complete stomal lip is at risk of being unable to retain a standard intraluminal device. With customization of either a peristomal housing or a stoma button, the patient is best evaluated by both a speech pathologist and prosthodontist, but the device itself is typically fabricated by a prosthodontist. Appropriate construction of a custom peristomal housing usually requires a mold taken of the area surrounding the stoma. Custom stoma buttons can be fabricated with a shorter length, a wider posterior “lip”, an elliptical shaped “lip”, or a double “lip”. The posterior “lip” is usually altered when the stoma button cannot be easily retained while the length is typically shortened if the stoma button blocks the prosthesis when attempting to speak.

 

Evaluating for, developing, and fitting a custom prosthetic device requires both experienced clinicians and a commitment from the treating institution (clinic or hospital) for appropriate materials and equipment to produce such a device. Furthermore, a treating physician should be the one to make the referral for customization of a prosthesis, even if it is upon the Speech Pathologist’s recommendation. The treating clinician(s) and physician should be aware of the risks associated with placing and using a customized device and your associated clinic or hospital should be equipped to treat a patient who experiences any complications associated with use.

 

In some instances, an experienced speech pathologist may perform the evaluation, customize the prosthesis, and fit the prosthesis. In other cases, the process requires a team approach between a speech pathologist, prosthodontist, and referring physician. Ideally, the patient would be evaluated by a speech pathologist and possibly a prosthodontist to determine the patient’s needs. A recommendation for customization would be made to the referring physician. The referring physician would then evaluate medical risks for the patient based upon the particular device recommended and ultimately refer the patient back to the speech pathologist and prosthodontist for fabrication and fitting of the device. Once a customized device is placed, the patient should be followed closely for success with the device and possible complications.

 

You will find that institutions, providing this service, may have a variety of approaches and capabilities. All should be capable of evaluating the need for a customized device and making recommendations within their scope of practice or recommending a facility that provides a larger range of services if the patient requires a device outside of their scope.

 

There are a number of ways to locate clinicians with this type of experience. Not every clinician who is experienced with TEP is able to provide this service, but experienced clinicians are often familiar with facilities that provide this service. If you are a speech pathologist, ASHA’s Special Interest Division (SID) 3, Voice and Voice Disorders, and the University of Iowa Department of Otolaryngology-Head and Neck Surgery sponsor an excellent e-mail listserve that allows members to post questions related to any area of voice disorders. This is an excellent forum to ask for information regarding experienced TEP clinicians. It is also helpful to perform a literature search to find out who in the field has published on the topic of TEP or laryngectomy rehabilitation. If you have attended or plan to attend any voice or laryngectomy related conferences or the ASHA convention, look through the published abstracts to see who has presented or will present on a related topic. If you are a patient, first ask your speech pathologist if you would be a candidate for a customized device. If so, they should be able to research facilities that could provide this service for you. Manufacturers of standard laryngectomy supplies are often able to recommend experienced clinicians.
 

 

 

 

 

[The March ‘07 article discussed and defined the power and capabilities of The Human Computer – that thing that sits between your ears. From here on, you might want to review that article if any of this isn’t making sense or working for you. But, for now, we are going to start learning techniques to help you better deal with life’s daily issues and realities – and we will be using our Human Computer to assist in these processes.]

 

Liar, Liar - Pants on Fire…

By Lanny Keithley

 

One of the things we learn early on is that we are not the center of the universe, and there are many things that we would prefer to be different than they are. Things that we think might make our lives better or more interesting. There are also times when we must explain or tell about some aspect of what we are, or did, or are planning to do. These are opportunities to embellish our positions, or even change them completely, by not telling the truth as we know it. The key phrase here, and the real topic of this article, is dealing with the “as we know it” part…

 

When you are a witness in a legal proceeding, you must take an oath that you will “Tell the Truth, the Whole Truth, and Nothing but the Truth”. This phrase is trying to identify and define what “The Truth” is, but we already know what it is inside – and we all know when we haven’t told it. This is the “as we know it” part that causes us all so many problems. There are many levels and reasons to rationalize not telling the truth “as we know it”, but for the purposes of this article, any and all such instances will be called “Lies” as they have the same effect on us that we have to deal with inside.
 
When we are young, it is much easier to lie about all sorts of stuff and it is done by most kids on a regular basis. And, when we were caught doing it by our peers, they would usually yell out the title of this article “Liar, Liar – Pants on Fire”. Because, even at that age, they knew that you would be squirming in your pants having to deal with the lie that you told – or would get punished for it more directly.

 

This is still how it works for adults, but a very large portion of the punishment comes from within. If you tell a lie that ends up becoming a legal problem or involving other people that take actions against you for it, then you also have those issues to resolve. The part that we are focusing on here is what it does to you inside from a whole variety of angles and positions.

 

Lies can be told for almost every reason that exists including protection, preservation, power, deceit, embellishment - the list is endless. The reasons and results can range from fending off a pending disaster to thoughtless musings. What everyone needs to learn and keep in mind, is that each lie does have consequences and should be seriously considered beforehand as being necessary and worth what it will cost you.
 
As we have discussed before in previous articles, every thought and event in your life is stored in your computer memory and is used for each related decision you will make in the future. So, one must keep mindful of what they do, listen to, and think about.
 
If you have the habit of not holding great value in telling the truth, it is one of the most insidious things you can do to yourself. It is a “Habit” as many folks learned to do it very early in their lives and seldom even think about it when doing it now. It will end up destroying your feeling of self worth, will consume a growing part of your freedom, and destroy your relationships with others over time. In most cases, it is all for little or no real reason at all. We will now review each of these results in more detail, so you can get a better understanding of them and their effects on your life and well being.
 
Your self worth is based upon feeling good about yourself, feeling confident about your capabilities and abilities to deal with life. Usually, when a person isn’t very careful about telling the truth or being accurate about themselves and their actions, they will embellish everything in an almost thoughtless way. They make everything just a little better in their statements, even when it has little or no value to the person they are telling it to and who usually could care less about it .
 
But, should you allow yourself to do this, it creates an almost constant load of negative thoughts being stored in your computer memory. All of these thoughts end up storing, “I am not worthy” or “I am not good enough” memories, enforcing that you don’t like yourself as you really are, and as such, feel the need to lie to be something different or better. Then, with every future decision you make, all of those stored negative self worth memories are brought up and overwhelms the real reality of the current decision being considered.
 
Over time, as all these lies are being told and all the negative memories are being stored, you also have the issue of having to deal with remembering and extending all the previous lies you told to keep from being caught in your own morass. This is where it can radically limit your ability to be free or feel free. I define freedom as the time you have that you don’t feel constantly compelled to be thinking or worrying about something. You might also call it free time or relaxation.

 

Liars have very little, if any, freedom because they must constantly be thinking about and remembering past lies during each new situation. And, the level of their “normal lies” is in direct proportion to how much they must be concerned about each and every event in life – “What did I tell this person last time?”, “What has happened since?”, “What should be the next thing to happen in this charade?”, and the list goes on. The normal events of daily life can end up being a full time job without doing anything of value – just trying to keep up with all the lies you have told in the past.
 
This brings us to the last point - the destruction of relationships. Even if a liar is very good and can keep it all going, so that nobody else picks up on the charade, it is almost impossible to continue it over time. The relationship the liar will destroy first is their own self image. Actually, every liar will end up doing that, but most will also destroy other relationships they have with family, friends, acquaintances, businesses and all others along the way. No person or entity, can deal with a liar over time. A liar cannot be trusted, by definition, and will be shunned by all that figure it out. This shunning can manifest itself from just not hanging around together anymore, to legal action depending upon the extent and value involved in the deception. So, the liar must continually move on to new relationships as older ones are terminated, deepening their own dark hole of self worth.
 
People often do not realize that every little embellishment, or “white lie”, has any consequence at all. Each lie might not have much all by itself but people, who don’t place a high value on being truthful to themselves and others, will not stop at one little embellishment. This habit usually starts at a young age and can quickly evolve into a way of life with very serious consequences on many levels. And, is there value in it? Does anybody else really care?
 
On the positive side, developing the habit of always telling “The Truth, the Whole Truth and Nothing but the Truth” will bring many rewards, and it not difficult to do at all. It’s mainly breaking the habit of not being happy with who we really are, and taking full responsible for all of our actions. The results are realizing the joy and freedom of feeling great about one’s self, of never having to worry about what we said before, and of not having to worry about someone else hearing or reading what we say. All of these things make us much happier and free our lives from much worry and concern.

 

It is very easy to stop being a liar. We must first realize that we are doing it and make the decision to stop. When our little “embellishment” program starts up, we must catch it and mentally say no to it. Then, tell the truth, be proud of ourselves that we did it, and relish becoming a better person each and every time. Telling lies is one of those “automatic” programs that will run from habit, if allowed. It must be consciously stopped until the new “truth” program grows to replaces it. After a short while, telling the truth will become automatic and there will be no need for embellishment. You will feel confident being you, all you, and nothing but you.
 
There is an old saying that “The Truth will set you free”. It is so true and well worth the effort to try. It is the path to personal freedom and happiness, and will result in having lots of good long term relationships. If it doesn’t work for you, you can always go back to your old lying ways.
 

 

 

 

 

Send in the Clowns

by Rosalie Macrae



The Chinese State Circus has come to my town and placed its gargantuan, mustard coloured trailers with Identikit precision, row upon row, where the people who dog-walk usually go. Now we walk curiously around the invaders, and marvel at the soaring marquee of deep Ming blue and mother-of-pearl, an unlikely sci-fi dream sequence in a soft Saxon setting. And we feel like the invaders. Puny mortals beside circus people like this massive stagehand who stood next to me in Patel's corner shop and scooped up five packs of untipped Players as if they were the kiddie ciggies-----I feel a faint coming on---- we used to buy for the children when they were playing at mummies and daddies.


My EL was on the counter while I looked at him. Stared, I suppose. He was the biggest man I had ever seen in real life apart from the giant miner in my childhood village, Robbie That's right, he gave up mining when somebody said that his 7ft. 11ins. would earn more for him in a circus than hacking coal in the high galleries. But just a little Scottish touring so-called freak show. Nothing like this eastern Valhalla of circuses. Years later I felt embarrassed and sad for Robbie when I saw him billed at a seaside fair. You had to pay to go into his tent and people just stood gawking awkwardly as he gave their hands a crushing shake and sold signed photos of himself. I crept out. He used to drink in my father's pub and I thought that he might have felt diminished, talking to me in that setting. I will never know. Another regret to forget.

As I was saying, my EL was on the counter and one of the Shaolin Wu Shu martial arts warriors, the circus aristocrats---I recognised him later-- looked at it curiously. He picked it up and held it to his ear. Gawky western cellphone he was probably thinking. Mrs Patel, a delicate flower who strikes terror in the hearts of local pickpockets , came round to our side of the counter and gently took it from him. Her hand vanished into his massive mitt. It was like Pocahontas meets Shwarzenegger, but much more awesome than the governor of California. She handed it back to me and said to show our Chinese friend 'how you work it'. I felt like the circus attraction and happily worked my audience------by this time the little shop was full of circus exotics buying hundreds of cigarettes from the stockroom where Grandpa Patel usually sits watching Bollywood. Not the warriors though. They wanted gum.

It was like Christmas for the Patels’ till. Ring, ring, merrily to please the bank manager. Mr Patel went off in his shiny old Volvo estate for more cigarettes from another Mr Patel in a less fortunate part of town.. My EL was turned up to top volume. I showed them how to make it say 'Good morning' or 'Zao shang hao' and they all had a go, jeering at the ones who couldn't find their sweet spot. Little wonder, with all that strong, solid flesh to get through. Mrs Patel winced when I asked her as quietly as you can with a Servox how she would like Mr P to be as lithe.


The last time I saw them as ordinary mortals, before the circus officially opened, was on the greensward outside their unadorned trailers. They picked up a good signal from some houses, including my own. where the aerial rises ungainly and high. They sat in a long line joined by a giggle (sic.) of tiny girl acrobats, each with a shiny state-of-the-art laptop, howling with laughter as they wrote their MSN texts to the folks back home. Just like us. I felt affection for the computer geniuses for making faraway home so accessible for homesick little girl athletes. And I felt proud of the fresh British air. That morning on the radio I had heard an actor, just back from China, saying the pollution in Beijing was so horrendous that you could look dirrectly at the sun and not harm your eyes. The throat is a different matter altogether. Everyone is harmed, and coughs and hacks, but smokes cigarettes as if they are tubes of magic. The actor said he had never felt quite the same about his elegant Chinese PR after he saw her descending from her taxi and spitting before lighting up again. Not at him, he understood; fortunately he wasn't in the firing line!

In the marquee last night the atmosphere, the expectation, was raw. The warriors did the impossible and I restrained myself from running into the ring to embrace the scene shifter at the end when they were already starting to pack up. Eartha Kitt recognised the sadness they leave behind. How I hope he doesn't become a laryngectomee but I wouldn't place a bet I didn't want to win. My grandson confided that he wanted to marry a Chinese acrobat one day. He said they were fit. Which, in current schoolboy slang, is as good as it gets.

This circus diversion was good for me.. Over the past month I have been going through my first real mood of post-laryngectomy melancholy. Lots of you will recognise it, and know how to deal with it. A new set of disciplines had to be accepted if life was going to be bearable. I had to be kinder to myself, stem the exhaustion by not trying to be all things to all people as before. And then I had to go and spoil it all by grabbing the spotlight to beguile, briefly, a little Chinese audience in a shop they will soon forget.

But it banished the melancholy. Touch chopsticks.
 

 

   WebWhispers Columnist
                                                                                  
Contribution from a Member
 

 

 

Sometimes You Need to Try Again

by Terry Duga

 

Our much repeated Mantra teaches us that "We are all different." The corollary to that mantra that we need to consider is "I may be different from what I was several years ago." We may find something that hasn’t worked for us at one time, may work later and be an answer we have overlooked.

 

I use the Blom Singer hands free valve, with the standard housing to hold it in place over my stoma. A housing will last me a long time, however, being a thrifty (tight) (fiscally responsible) individual, I sometimes use a housing longer than I should. This happened recently. The result was – I wore a sore spot in my neck where the stiff housing rubbed. Although I had ordered some new housings, they had not yet arrived, and I was out of new housings (bad planning on my part).

 

My options seemed to be to gut it out or to go a few days without the valve or housing to allow my skin to heal. Then, I thought of another alternative: I had some TruSeal adhesive housings, which are housings that come with adhesive attached. I had a few that I had tried years ago and I had a few more more that I had gotten at an IAL meeting. I had tried the TruSeal when it first came out. Heck, I had tested prototypes for Inhealth when it was being developed. I liked the comfort of the TruSeal but found that it did not give me a long solid seal, and that my neck, pushing down on the area, would tend to break the seal.

 

So, it was a weekend, I could play with it. I decided to try the TruSeal again. This time, I applied Shield Skin first and a layer of Skin Tac. I smoothed the tape over my stoma and gave it some time to sit in place before putting in the valve. Dr. Blom had mentioned that the tape used tended to hold better as the skin warmed it. This time, the seal lasted most of the day. Success!

 

I used the seal for a week while my skin healed. I learned that sometimes it pays to retry something that had not worked before.

 

I should have realized that earlier. Back 12 years ago (was it really that long) when I first started using the hands free valve, I had problems getting and keeping a seal (sound familiar?). The regular tape discs didn’t hold that well for me. But, the foam discs did the trick. I used them successfully for some time. Finally, after months, I tried the standard tape discs again (they are less expensive, and, remember, I am thrifty). I was able to transition to the standard tape, and have used it for years. I am not sure why the TruSeal worked so well this time. Maybe my throat had healed more in the intervening time or I had learned how to properly apply and keep a seal.
 
As I write this, a thought comes to me. I still have some foam tape discs. I think that I may try them for a while to give my skin a break. After all, they will hold the housing away from my skin. And, they are already here.
 
So sometime it pays in more than one way to try again.
 

 

 

 

Let Me Tell You How I Got Here...
Part 4

Bruce "Buck" Martin

 

I've been really struggling to put words to paper for the June issue of Whispers on the Web. I sent the editors a note saying I wouldn't be contributing an article this month because I had been "overtaken by events". That's not exactly true. A more honest reason is that I have been "overtaken by negative thoughts". I've been in a funk. When I left you last month I was writing about being just days away from my surgery. I had found WebWhispers.org, and I was feeling confident, hopeful, and positive in light of what lay ahead of me.
 
So, here's the chronology over the last several months and I will try not to bore you with a lot of details. Well, maybe a few!
January 11th, 2007 - total laryngectomy, bilateral neck dissections of lymph nodes, tracheoesophagel puncture (TEP).
January 19th, 2007 - home from hospital---all went well with no complications
February 2nd, 2007 - total extraction of teeth
February 19 to April 10th, 2007 - 37 radiation treatments with concurrent, once weekly, chemotherapy treatments
April 10th, 2007 - back home to rest and recuperate for 4 weeks.
May 7th, 2007 - back to cancer center for first of 3 "heavy duty" systemic chemo treatments to be given at 3 week intervals

 

Today, it is May 25th and I am sitting in the recliner at the cancer center getting my 2nd chemo treatment.

 

Many people have said that going thru this is like a rollercoaster ride without the scream and as one WW member says when signing his emails, "A whisper is as good as a scream to a deaf horse!" How true that is with the peaks and valleys and frustrations.

 

I've been spending way too much time in the valleys since returning to the farm. The surgery, teeth extraction, radiation and chemo, for me, have been the easy parts of this journey with all the top-notch professional care, constant attention, and truly humbling support from family, friends, and even strangers. I can't begin to count the number of "new" friends I have been making because of this cancer. I have had a lot of people tell me, and I strongly believe it to be true, "Buck, keep a positive attitude and you'll be fine." Well, that is a VERY difficult thing to do for a guy whose nickname is "Grumpy"! For as long as I've lived, I have been a consummate pessimist, "glass half-empty" kinda guy, and a firm believer in Murphy's Law (What can go wrong will go wrong.)

 

So, returning from the hospital environment to the isolation of the farm has been very challenging. After more than four months of surgeries, radiation, chemo, and with another month of chemo to go, I find that I am jnot quite as tough as I was. My strength and stamina have been substantially degraded. I see a 100 things around the farm that need doing but don't have it in me to "get 'er done". So those valleys I mentioned are filled with the "pessimistic Buck". It's a wild, crazy roller-coaster ride because the peaks and valley are constantly changing - by the minute, the hour, the day, the week........ My standing comment to my wife and friends has come to be, "I'm ready for my condo on the golf course, five minutes from the mall." That's just my metaphor for, "Things can't get much worse."

 

But then a fish jumps in the river, or a pileated woodpecker lands in the big sycamore by the house. A calf starts frolicking in the pasture, or one of the dogs comes and nuzzles me for a scratch behind the ears. Wednesday, after working for hours rounding up the 18 head of cattle, getting them corralled, run into a chute, immobilized in a head gate, wormed, inoculated, ear tagged, I crashed in my recliner, totally exhausted, with visions of condos dancing in my head. I glanced over to the side table by my chair and there, in a vase, were freshly picked roses from Diane's garden that she had placed there as "thanks" for my efforts in getting the cattle done. The roller-coaster begins to climb out of the valley towards the peak, and things begin to look a little better once again.

 

For the last five months Diane, my primary caregiver, has worked tirelessly as we deal with this cancer that has consumed our lives. The cattle need to be tended, fence repaired, firewood hauled, bills paid, health insurance deciphered, house cleaned, cars fixed, foster-son nurtured, school functions to attend, boy scouts, band, and on and on and on...... You get the idea. This rollercoaster called life doesn't stop and let everyone off when one of us gets cancer. I get all the attention, care, and support and the caregiver gets all the work and worry. There will certainly be a special reward for the caregivers in their next life, and we need to remind ourselves to stop and and show our appreciation much more often than we normally do in this life.

 

As for me, my job is to figure out who Buck is now. Those shoes I talked about in a previous article have pebbles in them now and they are hurting my feet as I put them back on and begin to walk down this new path. Will this new path take me in a circle and bring me back to a peaceful and contented farm life? Or will the new path take me out of Buffalo Hollow and to that golf course condo or to some place not thought of yet? As I walk this path I have two jobs. One is physical rehabilitation, and the other is emotional/psychological realignment. The physical part is easy and I know how to do the necessary work to regain my strength and stamina. The emotional and psychological will be the challenge. Can I turn that glass upside down and start seeing it as half-full? Can I convince myself that Murphy is wrong? As my wife tells me, "Be the smooth stone in the creek and let things just gently roll over you. It's the rough stones that get the waters all riled up."

 

I'll leave you this month with something that is hanging on the wall here in the cancer center. It's something I need to read everyday, and I imagine that many of you have seen this before.

 

What Cancer Cannot Do

 

It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit

 

Author Unknown

 

See ya next month...........
 

 

 


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

 

 

LOST

I am losing a friend. Not to death, but to something I consider a worse fate - Alzheimer’s Disease. Given the frightening statistics, most of us can expect to be touched by it somehow - if not ourselves, someone we know and care about. It is devastating and, like cancer, its effect is not limited to the unlucky soul in its path.

 

A year and a half ago, an old family friend asked for my help. Her mother-in-law was coming to live with her and her husband. “G” had been recently diagnosed with Alzheimer’s and together the family made the decision to have her live with them, dividing her time between her daughter in New Jersey and son, here in Maine. The daughter-in-law knew that I had just moved back to Maine, was available and experienced in geriatric care.

 

They needed someone knowledgeable about their mother’s condition, flexible to meet their needs and, perhaps most important, someone they could trust - not only to provide responsible care, but to offer advice, recommendations and guidance. I needed a flexible, part-time job to supplement my Social Security. It seemed like a win-win situation.

 

Something happened over the last 18 months. “G” and I became friends. It stopped being just a job. I have become an important part of her life and her family’s…and she is now, forever, a part of mine.

 

Forming new friendships is wonderful, but not necessarily noteworthy. I think “G” and I made such a special connection because of our own seemingly different situations. This was not the first time I have had that happen. Five years earlier, I had been a graduate student in Gerontology at UMASS/Boston doing an internship at a retirement community. Forty-something grad students don’t necessarily have a lot of credibility with eighty-something retirees who have been recently faced with a move to an assisted living facility.

 

I think, in the beginning, they liked me fine, but viewed me with some skepticism. That all changed when I became sick. They all watched as I lost my voice, had to withdraw from school, and learned to breathe through a hole in my neck. They learned to understand my new voice and they knew that when we talked about grieving the loss of one’s home and old neighborhood or one’s identity when you can’t do the things you have loved all your life, or the sense of betrayal one feels when the body just won’t cooperate…that I knew whereof I spoke. I had, as they say, “street cred”. If you are unfamiliar with the term, it means street credibility or someone who walks the talk…someone who speaks from experience.

 

Last year, when “G” and I were just getting to know each other, she confided in me her worries. She was early enough on in this disease to realize what was happening and she had watched her older brother succumb to it. I cannot imagine the fear and anxiety she must have felt. No wonder she didn’t want to get up in the morning!

 

She was still well enough in those days for us to go shopping (Boy, does that woman know how to shop!) or have her hair and nails done. Every day, as we drove around town, we would have the same conversation – and I mean the SAME conversation. She would lament giving up her home and her car (that was a big one), her feeling that she was losing control of her life, her determined effort to be brave and positive and not a burden. We would always decide, in the end, that while it is true that life can seem unfair and is surely unpredictable…”It could be worse.” At some point, every single time, she would turn to me and say, “Just look at you. That’s a helluva thing you have to put up with. What a shame.” And I would reply, “Well, you’re right, but, what are you gonna do…you play the cards you are dealt.”

 

Her response was always, always, always, “It could be worse…you could be dead!” At which point we would burst out laughing and go shopping.

 

I miss my brave, philosophical friend.

 

We don’t go shopping anymore and she no longer finally shows up downstairs perfectly groomed, coifed, and color coordinated. Our conversations are much more mundane these days and I must sometimes be the enforcer…time to eat… time to shower...no more people food for the dogs. Yet, she still recognizes me when I come to wake her up, and she still says “That’s a helluva thing you have to put up with. What a shame.”

 

She has stopped saying it could be worse. I haven’t.

 

Donna
 

 

 

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

 

 

"Do men have thyroid?"

 

Practically speaking, this is one of those innocent questions asked by a fellow at an IAL Annual Meeting during a panel discussion including all the medical professionals on the program.  They each had a few minutes to tell a little about their special field of medicine. Later they dealt with questions from the floor.  These laryngectomees were waiting to ask their particular question.  This was their moment to get a straight answer from someone who knows the field well enough to offer at least  a general "second opinion".

 

Someone asked an ENT if it is normal to include a hemi-thyroidectomy (partial) as part of total laryngectomy? The effect of radiation on thyroid was another question. The answers given were not easy or straight forward, which led to more questions on the topic of hypo-thyroidism.

 

Out of frustration a fellow in the front blurted out, "Well...do men have thyroid?"  A panel member repeated the question into his microphone so everyone could clearly hear the question.  The man had heard hormone levels mentioned so many times he wondered if this was one of those female problems we didn't talk about in public? If so, it obviously didn't pertain to him.  There was a little uncomfortable laughter, even though we've been told the only dumb question is the one that is not asked.  The answer is: yes, both men and women should have thyroid glands ... as standard equipment.

 

Unfortunately, the possibility of hypo-thyroidism (low function) is not always mentioned as part of the total laryngectomy surgery, and radiation after effect.  In fact, it is seldom mentioned pre or post op in some areas of the U.S.A.  Since only one lobe of the thyroid is usually taken as part of the safe margin, it is assumed that the other lobe will function sufficiently.  As laryngectomees we know that a majority of us have had radiation therapy either pre op or post op that will also diminish the thyroid function.  It is also true that some of us may have inherited a thyroid problem, and are not aware of it until we start asking family members about this problem.  Speaking from my own experience I will share what I learned, and how I discovered this whole subject with regard to our recovery, and quality of life following laryngectomy and radiation. 

 

Now that I look back, it is probably significant that I went home from the hospital with an infection along my incision, and developed fistulas. (This was the second incision on the same line; the first was to remove the tumor.) The fistulas had to heal before I could begin my radiation therapy.  I went right on with my speech therapy; first the neck type electro-larynx, and then the beginning of esophageal speech.  Funny, I thought I would just jump right into "at least a working vocabulary with esophageal speech".  It wasn't that simple for me even though I could mouthe the words...I still couldn't speak like the ladies I saw pre op on video tape using esophageal speech so fluently.  I knew it was possible, and found this setback frustrating.

 

I was able to use the EL very effectively after a few days of working with it.  In a few weeks I was also able to get up to 3 syllables with ES.  I won't include the not so nice words, but we laughed as they rolled out.  Soon my much too low weight of 110 rose to way over my weight when I delivered my 6 children(and they were large babies by today's standards!)  My GP and OB/GYN told me to eat less and exercise more.  I was already eating less, and still very active; must be the laryngectomy.  My hair was falling out; must be the radiation.  In the Midwest winter I was depressed; must be the weather.

 

Still, I was able to continue my part-time job, volunteer activities with the Kazoo Speakeasy I founded, my Civic Theatre work as Properties Mistress, Church activities, and the various schools my children attended.  I also took Hospice training as an adjunct to my Speak Easy leadership.  My neighbor/friend Hildy was an RN who trained at the U of Minnesota.  She stopped me one day after our Hospice class and told me that she had noticed a number of physical changes, hairline & eyebrow loss, weight gain, puffiness around the eyes, dry skin, etc., and wondered if anyone was monitoring my thyroid function?  Huh? 

 

This was 2 1/2 yrs post op.  No one had said a word about my thyroid.  How was that related to my laryngectomy?  Hildy explained that even when she trained to be a nurse 20 yrs earlier, she was taught that "it is common during total laryngectomy to follow down the side that the cancer is on and take that lobe of the thyroid as part of a safe margin."  She also told me that I seemed to have all the symptoms of hypo-thyroidism, and I needed to find an Endocrinologist for a TSH blood test and appropriate medication.  I made the appointment, and had completed the survey along with all the pre-appointment lab work done.

 

Before I could keep that appointment I found myself so disoriented I was lost driving in my own neighborhood, just 2 blocks from our home.  When I finally got my senses back and made it safely into my garage, I went straight to the kitchen phone, and called my new Endocrinologist  to alert him to what had just happened.  I was admitted to the hospital an hour later for further tests.  The search began to rule out  a brain tumor.  

 

Five days later the results were in.  No, it was not a recurrence of cancer, but instead it was "gross hypo-thyroidism".  What's that?  How did I get it?  Is it cancer related?  Scared?  You bet! In the meantime
I was put on the lowest dose of Synthroid to begin my recovery.  An initial dose that is too large can cause a major jolt to a system that hasn't functioned properly for a long time. 
 
The first 6 wks I was amazed at how alert I was. How much more energy I had.  I slept more soundly.  I lost 13 pounds without dieting; even enjoyed a beer and some pizza for the first time in a long, long time. My esophageal voice was back better than ever.  My libido was returning.  Hair, nails and skin were showing signs of new life. 

 

That summer I attended a Laryngectomee Rehab Seminar, and saw many of my mentors.  Their response to my claims about the problems with hypo-thyroidism was, "excuses for lack of motivation, and not practicing".  There was no research to back up my claims at the time. 

 

I also went back to my surgeon for my annual check up loaded with questions, and I wanted answers.  Although I knew it was a teaching hospital, I didn't know my surgeon's intern did my surgery until I met him as the fellow sitting in for my vacationing surgeon.  I told him what had happened to me in recent weeks.  He pulled up my typed surgical record, and told me that nothing had happened to my thyroid.  I stayed in my chair, and pressed the matter.  His next step was to ask Medical Records for send down his OR notes.

 

Soon they came zooming down the pneumatic tube into his office space.  As he read his blue ink hand written notes, on the light blue index cards his face changed expression when he got half-way through his own notes.  Yep, there it was...blue on blue..."the right lobe of the thyroid was taken".  He apologized.  I asked him to please be more mindful of the long term consequences in the future.  Enough said about how it began. We can only add radiation didn't help the left lobe that remained.  No, the radiation staff back in my hometown never said a word to me about thyroid damage either.

 

If you want to know more please check the following resources:  Google "hypo-thyroidism", and abbottlabs.com.  There are many pages of articles about hypo-thyroidism with complete lists of symptoms, and updated tests now available, and who should interpret the results.  Abbott Labs offers a free journal so you can chart your baseline TSH scores for future reference.  Since this is a slow progression of changes it is advantageous to chart what your tests show.

 

Please remember that the best thing you can do for yourself is to get a baseline TSH blood test with at least a T3 & T4 uptake for future reference.  Low functioning thyroid can be due to surgical removal of a lobe, radiation, or it can be hereditary. 
 
Ask your questions, do your research, talk to your doctors, and please don't write off every change to "laryngectomy".  Who knew what would follow as a result of this procedure?  I continue to learn more about this subject every time I write about it
Here's to your good health...Elizabeth Finchem
 

 

Welcome To Our New Members:

 
I would like to welcome all new laryngectomees, caregivers and professionals to WebWhispers! There is much information to be gained from our website and from discussions held by our members on the email lists.
 
Pat Sanders, WW President
 
 
We welcome the 38 new members who joined us during May 2007:
 

Gary Abbott - (Vendor)
Carpenteria, CA
David Arnaud
Port Arthur, TX
Glen Blundon
Russell, KS
     
Tammy Ball - (Caregiver)
Lakeland, FL
Karol Beaufore - (Returning Member)
Alpena, MI
Jerry Benson
Silver Lake, IN
     
 Meredith Bosley - (SLP)
Boston, MA
Linda A. Bourgault - (Caregiver)
Ewa Beach, HI
Melissa Corcoran - (SLP)
Greenville, NC
     
Fred N. Darnell
Sandpoint, ID
Darcy Edwards
Harris, MN
Chuck Fetzer
Fruitland Park, FL
     
Sam Gass - (Caregiver)
Lebanon, PA
Chuck Fetzer
Fruitland Park, FL
Vickie Gray
Lakeland, FL
     
Drema Green - (Caregiver)
Charleston, WV
Linda Lujan - (Caregiver)
Vacaville, CA
Tony Hall
Shepton Mallet, Somerset, UK
     
Canterbury Theo Hatten
Eastsound, WA
Ralph P. Johnson
Englewood, FL
Joann R. Kmiecik - (SLP)
Cleveland, OH
     
Bradley Kracht - (Vendor)
Westfield, IN
Steve Krank
Minnetonka, MN
Betty J. Lusk
Shepherdsville, KY
     
Richard McKittrick
Preston, CT
Sharon Poole - (Caregiver)
Floral City, FL
Marshall Rodgers
Spartanburg, SC
     
Morgan Skinner
Denver, CO
Lindsey Slaughter - (SLP)
Atlanta, GA
Howard A. Smith
Lake Placid, NY
     
Jerry Snow
Rockwood, TN
Linda Stachowiak - (SLP)
Tampa, FL
Stephen Staton
Sun City, CA
     
Harold Sibley
Ramea, NL, CAN
John Tirello - (Caregiver)
Wildwood Crest, NJ
Nancy Travers - (SLP)
Philadelphia, PA
     
Andrea Zing (Caregiver)
Brookwood, Surrey, England
Simon Zing
Harlech, Gwynedd, North Wales, UK
 

 

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:
 
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