May 2007

 


 

 

Name Of Column Author Title Article Type
News Views Pat Sanders Get Well!  Get Voicing!  Get Living! News & Events
Voice Points Annette H. May, M.A., CCC-SLP Customizing Voice Prosthesis - Pt 1 Education-Med
My Neck Of The Woods Iain Price Connemara Half Marathon Experiences
WebWhispers Columnist G. W. Buck The Great Egg Drop Of 2007 Experiences
Worth Every Penny Lanny Keithley A Line In The Sand How To
A Scotish Accent Rosalie Macrae A Queue To Speak To Experiences
Vicki's Midnight Train Vicki Eorio Thank You, I'd Rather Read Experiences
Between Friends Donna McGary Disability Benefits - Pt II Experiences
WebWhispers Columnist Noor Ali G. Haider Meeting Mr. Death In Pakistan Health Problems
From The Farm Bruce "Buck" Martin How I Got Here - Pt 3 Experiences
New Members Listing Welcome News & Events

 

 

 

 

News

 

We have received the following announcement from the Foundation for Voice Rehabilitation with information on their present projects and future plans. We will bring you up to date as they complete more of these interesting plans.
 

Get Well!  Get Voicing!  Get Living!

 

Many individuals with laryngeal cancer have found that these are the three main phases of recovery. Keeping those goals in mind, the Foundation for Voice Restoration (FVR) was established to facilitate the development of improved communication and an enhanced quality of life for laryngectomees and their loved ones.
 
To assist in achieving rehabilitative goals, the Foundation for Voice Restoration is in the process of developing and assembling a portfolio of educational and informational materials for distribution to laryngectomees, clubs, and clinicians. All printed publications and video productions in this series are produced under the supervision and direction of independent medical and speech-language pathology specialists. Clinical and medical directors include Mark I. Singer, MD, of the California Pacific University; Daniel Deschler, MD, of the Massachusetts Eye and Ear Infirmary, Harvard Medical School, and Carla DeLassus Gress, ScD, CCC-SLP.
 
Currently, there are two videos nearing completion. "Managing the Emotions of Laryngectomy Surgery and Recovery", is for the laryngectomee and family, and addresses the wide range of emotions that are experienced throughout the recovery process. Primarily for speech-language pathologists and other medical professionals, "Building Healthy Client-Family Relationships for Improved Outcomes" explores counseling techniques, which can be used by the rehabilitation team members to facilitate the psychological recovery of laryngectomees and their caregivers.
 
Both productions were developed for the Foundation at the University of South Carolina, under the direction of Caryn Melvin, Ph.D. Additionally, patient and clinical videos on stoma care, for immediate post op thru "stabilization", are in the early phases of development, as well as an additional video set presenting selection and instructional methods of voicing.
 
Other initial projects, slated for sharing with all clubs and sponsored by the Foundation, include several outreach programs, such as laryngectomee visitation protocols, tobacco awareness seminars and club presentations, which are under the direction of John Ready.
 
The Foundation also assists in the sponsorship of instructional courses for SLPs, such as the recent workshop, "Managing the Tracheoesophageal Prosthesis Patient", held at Stanford University in March. In addition to its patient information and professional education objectives, FVR has committed to assist clinical research endeavors, which impact the management and care of individuals with larynx cancer.
 
As the programs develop, further information about the Foundation and its projects can be found at www.getvoicing.org
 
Bob Kelley, Director
Phone: (408) 241-1950
Cell: (408) 761-1100
Email: bob5436@aol.com
Foundation for Voice Restoration, a non-profit [IRS 501(c) 3] organization

 

 

The Delight of Excessive Contributions

 

If you ask a newsletter editor what they want most of all, the answer is good writing, interesting topics, and extra articles.  This month, we got all three. 

 

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 One: TEP Troubleshooting Update
Annette H. May, M.A., CCC-SLP
M.D. Anderson Cancer Center Orlando

 

Following a total laryngectomy, both patients and medical professionals are often overwhelmed with the tools and knowledge necessary to care for a permanent tracheostoma. When maintenance of a tracheoesophageal (TE) prosthesis is included in this daily care regimen, the process may become even more complex. Alternatively, some are not aware that multiple options exist to allow for the most appropriate fit of prosthetic devices. This often leads clinicians (usually speech pathologists and otolaryngologists) to treat post-laryngectomy rehabilitation as a "cookie cutter" process. In some situations, clinicians may be limited to using a single manufacturer's line of products which may not be optimal for every patient. Additionally, even within one product line, clinicians may not be aware of the variety the manufacturer has to offer. When the treating clinician for a patient is unable to offer a solution for a prosthetic malfunction, it is often difficult for a patient to know where to turn for alternatives.

 

Although there is not always an answer to every problem, there has been enormous progress made by both clinicians and prosthetic manufacturers over the past several years to trouble-shoot common and unusual problems. A variety of educational programs now exist to make it easier for clinicians to receive specialized training in evaluating and treating patients following total laryngectomy. Although a two day training course does not teach a clinician everything they need to know to achieve competency in providing post-laryngectomy rehabilitation, these courses serve to expand their knowledge base and increase patient accessibility to facilities capable of at least basic prosthetic management.

 

Prosthetic manufacturers are also rising to the challenge of producing devices that will address both the increase in medical complexity that we currently see and a greater demand to improve quality of life following total laryngectomy. I am amazed by the volume of brochures I now receive announcing various courses related to post-laryngectomy care, often both patient and professionally oriented. When I entered the field, the training options open to me outside of my institution were limited in terms of scope, location, and frequency of offerings. Similarly, when cleaning out my office recently, I couldn't believe the increase in variety when comparing a catalog I found from five years ago to the catalogs I have on my shelf today. I see patients, following total laryngectomy, for prosthetic rehabilitation on a daily basis and I still sometimes find it difficult to keep up with the "latest and greatest". The scope of this article therefore is to let both professionals and patients know that there are options above and beyond what used to be considered standard of care.

 

Outside of believing that it is crucial to have specialized training in fitting prosthetic devices following laryngectomy, I also believe that it is essential for even experienced clinicians to stay up-to-date on the large variety of products that manufacturers have to offer. In my opinion, remaining current on alternatives to troubleshoot problems, when your "standard" products are not working, is the first method of customizing a rehabilitation system that will maximize function and quality of life for your patients. I won't highlight specific suppliers, as WebWhispers has a comprehensive list of suppliers and this article is not intended to promote any particular suppliers. Suggested manufacturers will be included in the following sections, but keep in mind that multiple suppliers often carry a variety of manufacturers' products. I would encourage both clinicians and patients to speak with representatives of these companies to help keep you up-to-date on the products they offer. Many of these companies also know of experienced clinicians around the country and sometimes around the world that can help you troubleshoot difficult cases.

 

This article presents various TEP problem solving options that are available from manufacturers as well as information regarding customized troubleshooting options.

 

Problem solving options via using manufacturers equipment will be discussed first:

 

Problem: Dislodgement/Possible Aspiration (inhalation) of the Voice Prosthesis
Non-indwelling voice prostheses have a thin strap extending from the tracheal flange. This strap is attached to an insertion device when placing the prosthesis to prevent aspiration of the prosthesis in case of inadvertent dislodgement during insertion. The strap is then left intact and taped to the neck following insertion to allow for ease of removal and replacement of the prosthesis and also as an additional safety measure to aid in preventing aspiration if the prosthesis is accidentally dislodged. In some cases, the puncture tract is seated too low within the trachea to allow a standard length strap to be adhered to the neck. In this case, a few types of non-indwelling voice prostheses are available with longer straps as special order items. A non-indwelling prosthesis is also available with an extra safety cord attached to a medallion that is larger than the stoma to safely and easily retrieve the prosthesis in case of dislodgement. The medallion and string would then be taped to the neck or chest to prevent accidentally removing the prosthesis. This may be used as a preventative measure in case of a low seated puncture tract, but may also be useful if a patient has experienced dislodgement in the past and has difficulty maintaining adhesion of the strap to the neck. Additionally, if the patient appears to be at risk of dislodgement due to non-elastic tissue (tissue appears "mushy" or the prosthesis is inserted or removed with little to no resistance), the prosthesis with the safety cord may be the best option. A durable cord may also be threaded through the strap of any prosthesis and tied to a button that is larger than the stoma to serve the same function. Suggested manufacturers for these products include InHealth Technologies (Special Order Products) and Atos Medical (Provox NID).
 
Problem: Leakage/Aspiration Around the Voice Prosthesis
A common indicator that a voice prosthesis should be replaced is when liquids or saliva begin to leak through the center of the voice prosthesis, resulting in aspiration. This typically indicates deterioration of the valve mechanism. However, just because a patient complains of coughing when swallowing, do not assume that they are leaking through the prosthesis. Leakage may also occur around the prosthesis if the puncture tract becomes dilated. This may occur due to poor tissue quality or due to piston-like motion of a prosthesis that is too long for the tract. If a clinician is replacing the voice prosthesis, it should always be inspected while the patient is drinking prior to removing the prosthesis to determine if the leakage is through or around the prosthesis. Patients that are changing their own prosthesis may also inspect the prosthesis while drinking to distinguish leakage through or around the device. If this is difficult for a patient to visualize, they may replace a new prosthesis as usual. If the newly replaced prosthesis continues to leak, they should follow-up with their treating clinician for evaluation.

 

If leakage is noted around the prosthesis, the treating clinician should first remove the prosthesis and resize the puncture tract. In the past, there was limited variety of prosthesis lengths. While it is better to err on the side of too long rather than too short, this is not typically necessary as prostheses are now available in the following millimeter lengths: 4, 4.5, 5, 6, 7, 8, 9, 10, 11, 12, 12.5, 13, 14, 15, 16, 18, 20, 22, 25, and 28 (availability of specific length will vary between manufacturers and prosthesis type). If the length of the prosthesis is appropriate, but leakage persists around the prosthesis, an indwelling prosthesis is available with a larger esophageal flange to secure a better seal between the prosthesis and the esophageal side of the dilated puncture tract. Suggested manufacturers for these products include InHealth Technologies, and Atos Medical.

 

Problem: Difficulty with Airflow Resistance
A certain amount of pressure is required to open the valve of a voice prosthesis. This will vary between individuals. If the pressure required to open the valve is too great, the patient may experience strained TE voice, shortness of breath when speaking, and reduced phonation times. Both indwelling and non-indwelling voice prostheses are now available in a variety of outer diameters (16, 17, 18, 20, 22.5 and 24 French). A larger diameter voice prosthesis may allow for greater airflow through the shaft of the prosthesis, requiring less effort to open the valve. Additionally, some prostheses with the same outer diameter have varying inner diameters that may account for differences in airflow resistance. A duckbill prosthesis with a larger slit is also available to allow less airflow resistance when speaking. Suggested manufacturers include Atos Medical, InHealth Technologies, Hood Laboratories, Entermed International

 

If the pressure required to open the valve is too little, then patients will often experience inadvertent opening of the valve either when breathing or swallowing. If this occurs when breathing, often gastric filling (too much air in the stomach) will occur. This can be very uncomfortable and embarrassing. If inadvertent opening occurs when swallowing, leakage through the prosthesis may occur. Both indwelling and non-indwelling prostheses are available with increased airflow resistance to reduce inadvertent opening of the valve when breathing or swallowing. Suggested manufacturers include Atos Medical and InHealth Technologies.

 

Problem: Leakage Through the Center of the Voice Prosthesis
If a newly placed voice prosthesis begins to leak immediately or after only a few days, it is possible that the valve is intermittently opening during breathing and/or swallowing. Typically, this is not the result of a faulty prosthesis. If the leaking prosthesis is removed and the same problem is experienced with another new prosthesis, then typically a different type of prosthesis is required. As mentioned in the previous section, voice prostheses are available with increased airflow resistance to reduce inadvertent opening of the valve.

 

The average life of a voice prosthesis is typically about two to three months before the valve begins to leak. Often, the reason for valve failure is due to growth of candida (a fungal growth) on the valve which results in an incomplete seal between the valve and the valve seating. The valve then rests in a slightly open position, thereby allowing fluids to leak through when swallowing. Sometimes patients develop this problem in as little as a few weeks. For patients that have rapid fungal colonization, anti-fungal medication may help preserve the life of the voice prosthesis. This is not always effective and can become costly when patients do not have prescription coverage. In recent years, voice prostheses have been developed that include candida resistant (anti-fungal) materials to preserve a longer life of the prosthesis. Suggested manufacturers include Atos Medical (ActiValve) and InHealth Technologies (Blom-Singer Indwelling Advantage

 

Problem: Difficulty Inserting a Voice Prosthesis
A voice prosthesis should come with an appropriate insertion tool for placement that is recommended by the manufacturer. However, if the puncture tract stenoses (narrows) rapidly or if the puncture tract is seated low within the trachea, many types of voice prostheses can become difficult to place. If the puncture tract stenoses rapidly, increasing the duration of dilation of the tract between removal and replacement should be considered. If this is not effective, use of gel caps can ease placement of a prosthesis. If a standard gel cap is not effective, tapered gel caps are available. There is also a prosthesis available with a tapered loading tool which can be effective. If the puncture tract is seated too low within the trachea, often times it is difficult to achieve the appropriate angle to insert the prosthesis, especially if the stoma is small. Some insertion tools are more flexible and can be bent to achieve the desired angle while sometimes simply a longer insertion tool will ease placement if the stoma is large enough. Suggested manufacturers include InHealth Technologies (gel caps) and Atos Medical (tapered or longer insertion tools).

 

Problem: Stomal Stenosis
Stenosis (narrowing) of the tracheostoma may result in shortness of breath, difficulty clearing secretions from the airway, and difficulty placing, removing, and cleaning a voice prosthesis. There are a variety of intraluminal devices (devices placed within the stoma) available that will serve to prevent stenosis or dilate a stoma that is already too small. Laryngectomy tubes and stoma buttons are available in many different lengths and diameters. Some are pre-fenestrated (smoothly perforated in an area that will allow for easy passage of air through the tube and into the voice prosthesis) or tools are available to fenestrate any device. Most are made of silicone, but the firmness of the silicone varies between products. Laryngectomy tubes and stoma buttons are also available in plastic. Sometimes the more flexible devices are easier tolerated and easier to place and sometimes the opposite is true. This is a good reason to try multiple devices to find the best fit for the patient. Some suppliers offer sizing kits that can be sterilized and reused for fitting purposes if multiple devices cannot be stocked in the clinic. A clinician may also create their own "sizing kit" by purchasing one of each size of a variety of products for fitting purposes only. Once the best fit is determined, a prescription may be provided to the patient for ordering. The "sizing device" may then be sterilized for repeat use according to manufacturer's recommendations. Suggested manufacturers include Atos Medical, Kapitex, InHealth Technologies, and Southwest Medical Supply.

 

Problem: Difficulty with Occlusion for TE Speech
The tracheostoma can sometimes be difficult to completely occlude for speech. Difficulty with digital (finger) occlusion may occur if the stoma is irregularly shaped, too large, or if the patient has poor dexterity. In this case, peristomal attachments (adhesive baseplates placed around the stoma) or intraluminal devices may be considered. A filter or HME can be placed within peristomal attachments and some intraluminal devices. This provides a smaller and more regular shaped "target" to occlude. These devices will also accommodate a hands-free valve which, when successful, will eliminate the need for finger occlusion. As with intraluminal devices (discussed in the previous section), there are many choices of peristomal attachments to accommodate different needs for either finger occlusion or hands-free occlusion. They are available in a variety of materials with different adhesive properties. Some exist for sensitive skin. Multiple shapes and sizes are available. They are available in different thicknesses and different levels of flexibility. Peristomal attachments are available in one piece (housing and adhesive) or separately (making one housing interchangeable with multiple adhesives). Suggested manufacturers include Atos Medical, Kapitex, and InHealth Technologies.
 
Problem: Mucus Production/Coughing
Following a total laryngectomy, the heat, moisture, and filtration that the nose provided during breathing before surgery is absent. This physiologic balance should be restored to the greatest extent possible to maximize pulmonary rehabilitation. If this aspect of postoperative care is left unattended, a patient may experience excessive or thick mucus production and/or excessive coughing. Stoma covers and a variety of basic filters have been on the market for many years, but there are now more options than ever to accommodate a variety of needs and preferences. Filters are available with "built-in" adhesives (filter and adhesive all in one unit). This may make it difficult to clear secretions, but for patients who have secretions already under control, the option of manipulating only one device may be preferable. Treated filters are available to further improve moisture as compared to basic filters or covers. Filters are available with a variety of airflow resistance to accommodate different physical activity levels or to help accommodate to resistance with breathing that is lost when breathing through an open tracheostoma. Some filters will attach to either a peristomal or intraluminal device and some will work with use of a hands-free device. Suggested manufacturers of treated filters include Atos Medical, Kapitex, and InHealth Technologies. Almost all laryngectomee suppliers carry some type of filter and/or stoma cover.

 

This article will be continued next month. Customizing the voice prosthesis to solve TEP problems will be discussed.
 

 

 

 

 

 

 

Connemara Half Marathon

Iain Price
Islandeady
County Mayo
Ireland
 
The day began at 6 a.m., though the logistical planning had started long before. The dogs had been dispatched to kennels the previous afternoon. We would be gone all day; they could not be tied nor loose for that amount of time in the lambing season, and my neighbour, brother-in-law Cormac, was also running and would not be there to mind them. We would need to be on the road for 7 a.m., the drive from Mayo to Oughterard taking about an hour and a half. We were much closer than that to Leenane, where the race was to begin, but all buses to the start were on the Galway side rather than the Mayo side (that old Galway bias!) and spectators could only travel from Oughterard.
 
Before then the cattle had to be fed and watered, and the children too. My wife insisted that I was not to work that morning so she went out into the twilight on a clear crisp morning to throw out the silage. I had at least opened the bale for her the day before and I contented myself with filling the buckets of water for the two cows in the maternity ward. Jolene was the latest arrival the day before, in honour of Dolly Parton, who we were to see the following day.
 
My daughter had recovered from her stomach bug and so we were all going, the two kids, my wife, my brother-in-law and yours truly. After filling the water buckets I descended into the yard to tell my wife that I had some stomach pains of my own. Her face fell, it was what we had feared, and I thought she would drop the silage fork.
 
"April fool!", I announced. My wife's reply is not printable here, but I was too far away to be in any danger, and I believe I am forgiven now.
 
The trip to Oughterard was uneventful - pleasant at that time of the morning, little traffic, and the day remained clear. Although the sun shone, it was still only April 1st and very cold. Cormac and I were soon on a coach to bring us to the race - my wife and children would have to get a later one and so they headed for a café. With drinking water off limits in and around Galway due to a cryptosporidium outbreak, we were all on our guard not to drink anything that hadn't been boiled for several days - another excuse to stick to alcohol, if any were needed.
 
At this stage I consumed the banana I had carried in my top pocket from Mayo. I would need some sustenance, but I cannot run comfortably if I have eaten too heartily. When I got to Leenane later I noticed many runners carrying bananas and realized I had joined an elite club - if only I had kept the skin to show that I belonged I thought, having to content myself with just a knowing look. Several people moved away from me.
 
But before we got to Leenane, I had had a shock. Having studied the map of the Connemara half marathon I had of course noted the steep hills at the start and finish. The rest of the course looked fairly up and down and steady to my eyes, but cartography is obviously not a strong point. We passed straight through Maam Cross where the race was to finish and the coach appeared to go downhill all the way to Leenane and the start.
 
My target of two hours was quickly readjusted to two and a half and I even began to worry that this choice for a first half-marathon may be beyond me. However, having put pressure on myself by telling loads of people about the race and obtaining sponsorship for the Irish Cancer Society, 500 Euro at the time (now near 700), I knew that I dare not fail. The upper lip was stiffened, resolve was restored. I was ready to run into the valley like the 600 in Tennyson's Charge of the Light Brigade - "Their's not to reason why, Their's but to do and die" - but without the dying bit.
 
The only problem was they had us there over an hour before the start. Cormac, who had intended to power walk a lot of the race anyway, decided to set off early at 11.00 with the walkers. I paced around, watching other runners stretch, jog, queue for temporary toilet cubicles, smoke cigarettes and eat bananas. It was now warm when standing out of the shade and I packed my jacket away and sent it back in my bag on a lorry to meet me later in Leenane. But just before removing the garment, I had been hit by a smoothie from a fellow athlete who neglected to secure the top of his drinking vessel before shaking it.
 
He was suitably apologetic and at least nothing I was going to run in had been affected - so I was not sure whether this was a good augur or bad. Mass had started in a nearby church, so I took the optimistic view and dedicated the spilt offerings to whichever God or Gods were present. I believe it was mostly raspberry.
 
Then all of a sudden we were asked to move to the start line. It wasn't at all clear where this was. Some seemed to be jogging up the road to infinity and beyond, most had stopped near the church. I stayed there and found myself asked by other bemused runners if this was the start. I confidently informed them that it might be. A Guard stood near by in a florescent yellow jacket and helped by adding his opinion that it would be around there somewhere. And sure enough we were both right.
 
Midday came and we were off and running. I had managed to sneak close enough to the front so as not to be too impeded by other runners before getting into my stride. I had to negotiate a few parked cars to achieve this, but I didn't set any alarms off.
 
And so out of Leenane and up the first hill. Many people were passing me but I was also passing by many others. I felt I was going too fast, being pulled along by the crowd, but in training the first few miles were always the difficult ones.
 
It was now very warm in the sun and the laryngofoam I was wearing had to be discarded due to sweat, something that had rarely happened in my training. I was relaxed enough with a small neckerchief there anyway so did not replace it and soon found I was in a comfortable rhythm. The first hill over, the rest of the course was now not nearly as bad as it had seemed from the coach. The incline was generally upwards but I had been deceived into thinking it was steeper than it was.
 
I checked my watch with each mile - definitely going faster than normal; the two hours could be on after all if I didn't overdo it. There were a few aches and pains, first a foot, then a knee, and I saw some other runners had stopped with various ailments. I knew at the seven mile mark though that I would complete the course - I had time to spare and could run 10 minute miles from then on and still make my 2 hour target.
 
There had been a brief scare when the wind seemed to get up and blow against us, but it was just the shape of that part of the valley, the wind soon died down and there were no Spartans to block our path - I was as confident as Xerxes that I could not be stopped now. But as I turned at Maam Bridge and Keane's pub just before the 9 mile mark, where several locals waved hats and pint glasses at us, I knew the biggest challenge was waiting. This was the steepest climb on the course, between miles 9 and 11, a hill called "The Hell of the West" on the map we were given by the race sponsors. I don't know if it is really called that, or they just christened it that themselves to inspire dread - but it is aptly name. My good time went out the window. I was now as confident as Odysseus staring out from captivity on Calypso's island. Would I make it home at all?
 
In the past, when hill walking up mountains such as Croagh Patrick in Mayo, the only answer I have to such daunting physical challenges when fatigue grips is just to put one foot in front of the other and to forget about the distance remaining. I put this form of denial into effect again, slowed down to a brisk walk at times, but kept going. There were more crowds now - telling us we were nearly at the top of the hill, all downhill after that and so on. I could tell they were lying, but I did not have the energy to confront them for there cruel and unusual behaviour. One foot in front of the other.
 
But there it was - the hill stopped going up. I checked my watch. I could still do two hours if I could run the last two miles at about 9 minutes each. Easy enough, surely, with downhill gradients from here. I had taken advantage of any such offerings on the course so far and would do so again. But the legs were not responding - they had gone to the union rep in the brain and threatened a walk out, finally compromising on a work-to-rule.
 
The last mile wasn't downhill either, the landscape had flattened out. If I could get my hands on those well wishers up the hill they'd be sorry, but I decided against running back up to them for the time being, for there at last was the finish line.
 
We were being funneled towards it and I could no see a time - by my watch I was just under two hours though. Looking back at the clock - for some reason on display to you only when you had passed the finish line - it said 02.01. That will do I thought, considering the terrain and the crowding at start and finish I would take that as my aim achieved. The official time subsequently proved to be 02:00:37.
 
I adjusted my neckerchief - I think it was ok but I didn't want to attract attention for the wrong reasons - and posed for a photograph as my wife appeared. As usual nothing to worry about, I was just another runner as far as anyone else was concerned, though anyone speaking to me after must have thought I got a bit of a throat infection from the event. And in truth, running with a laryngectomy is little handicap.
 
Any problems I have had, have been down to my levels of fitness, stamina and weight. Having to occasionally stop or slow down because of coughing or changing a laryngofoam is a minor, not a major inconvenience. Becoming fitter with the training, I have found I cough a lot less and I am avoiding the colds that the rest of my family is getting. Yet I had thought when starting on this road that I would have more problems and there are always reasons not to do things which require time and effort - but I'm glad I persisted and ignored those doubts.
 
If you had told me six months ago that I would run a half marathon in two hours I would have thought you were mad - I could barely run a mile. But my 40th birthday fast approaches and I am as fit as I have ever been. It's comforting to say that the laryngectomy is almost irrelevant to that fact, and I hope those recovering from recent operations, or who like me, many years afterwards, are not in great shape fitness wise, can see from this that you could, if you so desire, perhaps do more than you think.

 

There is a saying in Ireland, "Go N'eiri An Bothar Leat", meaning may the road rise to meet you. In reality you normally have to meet the road, particularly when running, but take whatever help is offered, and don't forget the bananas!

 

Regards,
Iain Price
 

 

 

   WebWhispers Columnist
                                                                                  
Contribution from a Member
 

 

 

The Great Egg Drop of 2007

G. W. Buck
 
 
Today Friday, April 13th, 2007, is the day we have all been waiting for. Yes, it is the "Annual Suder Elementary School Egg Drop".

 

The students are asked to place a raw egg in a baggie and then bundle it up, so it won't break, decorate it, and put their name on it. The principal will then go up on the roof of the school and drop each one to the ground to see whose egg will break and whose will not. This is very important.

 

Of course Sydney and her dear ole sweet dad were up till 11:00 last night preparing, for her winning egg package, one egg, one baggie, three egg cartons stacked on top of each other, several pieces of bubble wrap inside the carton with the egg. It had several pieces wrapped around the outside of the whole package and of course the Easter gift bag to decorate it with. The completed project could be no larger then 7" x 7" x 7" and we complied with that and had an inch or so to spare.

 

Sydney left home with her Mother and the "PRIZE" egg package at 7:30 this morning. Dear Ole Sweet Dad called Mother and Child at 7:40AM to make sure they did not forget and leave the package in the car. Dad is still on needles and pins and cannot wait until time to pick up Syd and find out how the drop went. I am almost certain we will have a surviving egg as we really did a super job on our class project.

 

Curiosity having gotten the best of me, I decided to slide over to the school, silently park and watch the festivities. So I did so. From afar, the principal, Mr. Hinton, appeared to be scared to death as he emerged on the rooftop of the school with a huge box containing the entries for the drop. He slowly eased over to the side of the building being very careful not to get too close to the edge. He carefully placed the box between himself and the edge. He extracted the first entry from the box and unceremoniously let it fly over the edge. This first entry, not being very well constructed (looked like it was just thrown together), hit the ground and you could see the egg splatter inside the baggie. The crowd of delirious students went wild, shouting and cheering. I could tell by the crowd's reaction each time whether the egg broke or not. About the seventh entry he held up looked very well put together, almost as if a professional had made it, it was precisely 6 1/4" x 6 1/2" x 6" or so it appeared from where I was sitting, on the edge of my seat by now. It also had a very unique covering as if it had been wrapped at Macy's or somewhere. I wonder whose fine looking package that is, I thought to myself, and then suddenly it dawned on me "That is my and Syd's package" I cried to myself.

 

At this point I stuck my head out of the window and shouted "Yea Sydney, Wahooey", of course when no one turned to look at the shouting idiot in the parking lot, I suddenly remembered that I couldn't talk. Well, it's the thought that matters anyway, and believe me, I have plenty of those. Anyway, over the side went this wonderful piece of craftsmanship and to the ground it fell, bouncing and tumbling several times but not once showing signs of denting or hurting its precious cargo. The teachers on the ground called out the name, Sydney, and opened the package to reveal a whole intact raw egg.

 

Again I began cheering realizing that I couldn't be heard but not even caring. Wahooey! Wahooey! Wahooey! I could see my Proud little Bugg prancing up to the teacher to retrieve her prize. WOW! What excitement!

 

I set quietly reflecting on the steps watching the rest and was very pleased. There were other drops but none carried the thrill and excitement and satisfaction that mine had . As the crowd went back into the schoolhouse, I cranked up and silently drove back home, completely full of myself, of course.

 

To quote Syd after a phone call to one of her friends one day, "AHHH Good times...."

 

Fuzzy (G. W. Buck)
 

 

 

 

 

 

[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.]


A Line in the Sand...


By Lanny Keithley
 

We will now explore another tool used to help resolve questions and issues that come up in making decisions and in understanding why we feel the way we do about them.
 
There are a whole group of questions that can be summarized into "Why do I feel that way about this event/situation/issue?" These questions can range from casual musings to raging hostility and fear, depending upon the person's state of mind and their usual way of dealing with life's issues.

Your consciousness goes to work, using your computer to provide all the necessary answers to its questions, in dealing with the issue at hand. This is a basic part of the human being - typically called 'instinct'.

Each one of these questions, asked of the computer, works like a Balance Scale. As your memory is scanned about this topic, all the good/positive stuff goes on one side of the scale, and all the bad/negative stuff goes on the other. And, when it's all done, the scale is judged and the answer is returned to your consciousness. It then uses that new data in the process of figuring out this situation, and may ask more questions of the computer as needed, until it has figured it all out.

When these computer searches are processed and there are some seriously negative or concerning issues that come up, they produce Red Flag results that are meant to generate immediate and/or heightened awareness of that situation. Whenever you have a strong 'gut' feeling that that something is not right here, or just doesn't make sense - those are Red Flags. Trust your instincts and be very careful about dealing with this issue before resolving those Red Flag feelings.

Watch for 'opportunities' out there that are designed to make you 'not' address your red flag issues before committing to the deal. Usually, these are offering some opportunity that sounds too good to pass up, something that must be done right then, forcing you to act, now. If you have Red Flag feelings on any situation, I would highly recommend that you not commit to it, regardless of what it is, until you can resolve your doubts about those issues first. Your Human Computer is a very sophisticated, powerful, machine and it has found some serious problems that need to be resolved for your own good and protection. This has been said thousands of times before but "Trust your instincts". They are there to protect you and will not let you down.

This whole analysis happens in a moment and we are not aware of any of the detail processes going on inside us. The end result is a feeling or "position" that is based on the sum total of everything we have ever experienced that will affect that situation. We probably won't understand it, or why our conclusion is what it is but it is 100% accurate for us.

I refer to that position as "A Line in the Sand". Everybody knows that concept. It is a defined position that one person makes on any given situation. Often, it is an actual physical line, visually defining your space. Each side knows exactly where it is and when they have crossed it. It is a very useful tool for all.

This is exactly what happens within each of us but we have no place to physically draw that line, and the other side doesn't know where it is because they cannot see it. But, it is there, inside, and we can feel it - just like it was a foot wide and painted solid black.

If that was all there was too it, we would be done here, but why do people still ask all the "Why do I feel that way about this?" questions? We have just learned that we know the correct answer and know exactly where "our" line is - So, why all the questions and doubts?

The short answer is that we don't like or trust ourselves and/or reality. So, we try to disregard our instincts, and wish for another result to be reality. As we have all learned, throughout life, our conscious thoughts and desires sometimes would like things to be different, better, shinier, or changed. We sometimes wish we were someone, or something, other than we currently are. All of these types of thoughts cast doubt into the decision making process, if you allow them. Remember to use your mirror to resolve any questions you might have about what is the correct path or answer to any question you are not sure of.

You know the right answer, but you don't always want to listen to it, or you may want to put a little different spin on it - which is what created the need for therapy and endless confusion and worry.

For example, say your friend wants you to loan him some money to buy a car. Your instinct comes back with a "NO" answer with bright red flags all over it. But your conscious thoughts are saying stuff like, "He is such a nice guy." and "He is my neighbor." and "He probably would actually pay back the money this time, and not use it to buy drugs like last time." Inside, you know that loaning him the money is going way over your internal "Line in the Sand". If you don't do it, he may be mad for a while, but that will pass. There is a good chance that your long term relationship with him will be the better for you doing the right thing for you. And, what if you did loan him the money and he ended up buying drugs and harming himself?

Be aware of the Red Flags. They are there for a reason - to protect you from harming yourself.

If you keep on your side of your line and listen to your "instincts", you will have made the right decision, have no negative thoughts or concerns, can sleep at night, and will build positive events in your life's memory - offsetting some of the past negative stuff.

If you allow yourself to cross over your line, you are leaving yourself open to ongoing internal ridicule and turmoil - resulting in "I shouldn't have done that!", "Why did I do that?", "What is wrong with me?", types of issues that will continue to build the piles of negative/bad events and feelings in your memory and will be used for every future event in your life.

There are times that you do cross over your line, for reasons such as family or emotional commitments, but just be aware that you are doing so and take responsibility so you won't beat yourself up for it later. And always watch out for those Red Flags - they are there to protect you and should be given due consideration in all cases.

If you try and visualize the "Line in the Sand" that your instincts drew, when pondering any given situation, it helps you to properly analyze what is going on and to make better decisions, keeping out all the "conscious thoughts and desires" that cause so much confusion.
 

 

 

 

 

 

A QUEUE TO SPEAK TO

Rosalie Macrae.....



It was at a surprise party for step-daughter Maria's 40th birthday, in her village hall, that Rosalie was found sobbing in the loo, powder room, kazie, water closet,washroom, powder room, or what you will….as long as it's not 'toilet'.

Before I tell you about my tears (actually dry heaving sobs), I must just give vent to shock and horror at the news- stop press-that Prince William has ditched his girlfriend Katie because her mother used to be an airline stewardess and- wait for it- talks about going 'to the toilet'. Which in Royal circles (where the posing of your derriere isn't often mentioned) is as bad as saying 'Pardon me?' instead of the upper-class 'WHAT?'

Anyway there was I, locked in abject self-pity. For the first time since my laryngectomy I was, literally, unable to communicate. The heavy metal and reggae and tense folk singers, chuntering on about injustice--not a single conversation noise gap today -- (unlike your old friendly DJ popping out for a beer), made my EL conversation as useful as one pea in a puree. I could have been mute.

I know some larys are mute. But they are used to the drill and go prepared. I was not.

All these much loved people I had lost touch with after my operation, before recovering some confidence. I had so much to ask; so much to tell. But no wherewithal. I am sure you have been there. This was my first time. All the little things which are the stuff of life.

So and so married and not even pregnant! And what's this about the copper I had been told who'd set up home with the local vicar; what was the real story? And, yes, I was managing quite well. But,no, I hadn't 'met anyone new' yet. I could simply not be heard; not even by someone beside me. Writing messages on paper was no good. The tables were soggy with spilled drinkies. The lights were too dim to read anyway. And when an emotional Maltese granny came up and hugged me, shouting that Jesus heard me anyway, I fled.


To the lavatory, where, you will remember:

Three old ladies were locked from Monday till Saturday
Nobody knew they were there
Tra la la...

It was Maria, the birthday girl, rosy with excitement and Glenlivet, who flushed me out. Excuse the pun. Maria said I couldn't spend the night in there but there was nothing she could do about the music. Nobody knew how to turn it down.

She marched out and collared the caretaker who found a massive parasol reserved for rare visits from VIPs who don't go to the toilet either. The parasol was plonked on a lawn behind the hall, away from the din. with a table, chairs, and a notice on the counter, scrawled on the back of the, yes, TOILETS sign, saying that Gypsy Rose Lee--better known as Rosalie—was
‘At Home’ out in the garden.

It was dark by this time and the caretaker rigged up fairy lights and I went through a battery in an hour. Oh, how I talked the talk and everybody understood. Joy. How they filled in my local history gaps. They queued up to tell me their news and hear mine.

The entire party drifted outside on the grass and the spring blossoms. We took off our stilettos and our wedgies and our ghastly trainers and we danced the dance. And we sang the song.

Which had to be 'How do you solve a problem like Maria?' As she solved mine.

 




After I had sent off this article to Web Whispers, I was charmed by a letter in the Guardian newspaper from a former pupil, recalling what his old head, a Dr. WRV Long had advised his boys after morning prayers, 30 years ago. “One goes to the lavatory to perform one's toilet, be it in the water closet or urinal.” And that was Slough Grammar School, closely linked to Eton College, which is so posh that they put royal honey from the Queen's bees on their porridge. So he should have known what he was talking about.

 

 

 

 

 

Thank You, I'd Rather Read

 

Oh my heavens, I am in trouble! An old addiction is back in full force! It is known as READING. Watch out, it can catch you at any time.
 
When it hits, the need to read in every spare moment such as reading rather doing the wash, reading rather cleaning the floors, reading while talking with my husband, reading while watching TV, reading in the bathroom,(the best and most private place!), reading late at night, reading while the pasta is boiling are just a few examples of its power to affect my life activities and responsibilities. And my most secret activity that needs to be done but has yet to be completed? Shaving my legs. Help me! Help me!
 
If I were reading life changing articles or work related documents or inspiring things or self improvement items, maybe I could justify this activity. But I must confess, I am reading any quasi-best seller, every Vanity Fair article dealing with bi-jillionaires who have identity problems, every AARP advertisement, and the tons of books my retired neighbor is sending over day after day after day. In fact as I write this, her husband dropped off the book “Counter Play”. Is it good? What are the reviews? Who cares? It has a great cover and I can’t wait to get to it.
 
Being the competitive, compulsive person that I am, it is necessary that I not only read all of the books and articles but that I do it fast. These personality defects create the addiction that now is ruling my life.
 
Our esteemed Web Site Monitor is saying, “What does this have to do with being a lary, Vicki?” With all due respect, I believe it is another milestone on the never ending road to “normalcy”,” “acceptance”, “healing”, “healthy distractions”, or whatever term that represents us moving from a tendency to be overly self absorbed into returning to the main stream of life.
 
Notice I said “overly”. We need to be self absorbed about our disease, our recovery, our ongoing health status, our relationships, our self esteem, our sharing by giving back and sharing, and our caretakers. We do not need to be stuck someplace emotionally because of our disease. If that place prevents us from going back to some of those pleasures we previously enjoyed, let go and do it. Those pleasures may not save the planet or stop global warming but they sustained us before and should again. A safe escape is a gift. And much easier than doing that darn weeding that is waiting for me!
 
Believe me, I am not a Pollyanna ever, ever. Yesterday a wave of depression washed over me. No book or needle work or writing or communicating could minimize it or make it go away. A long nap, a supportive partner, a dog who gives sloppy kisses and 3 cats that push and push until they are petted brought me back and helped restore my energy. Blessed by an email from an old friend and was good to go.
 
However dinner was leftovers, I opened a new book, and did not do the wash or shave my legs……(I know, too much information but hey, to any woman reading this, she understands).
 
Pulling out the needlework, opening a new book does not change my reality. Doing something I use to enjoy and choosing to try to do again, does improve my emotional status and to me is another sign of healing. A soft chair, a quiet place, a book that provides a soothing mental distraction that may make me smile or cry and takes me to another place is heaven (until my legs rub together and the need to shave is now top of the list of things to do).
 
The train is passing through and I hear the clickety-clack of ----do-the-legs---do-the-legs----do-the-legs---do-the-legs--- as it fades into the distance.

 

Vicki
 

 

 


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

 

Disability Benefits: Part II

 

 
Back in March, I wrote about my initial process of applying for and receiving SSDI (Social Security Disability Insurance). That column was prompted, in particular, by a recent SS review in which they had denied my continued disability status. A periodic status review is normal. The timeline for that review depends on the original prognosis for your condition, determined when you are first granted disability status. It is my understanding that most recipients can expect a review within three years.
 
I was notified by mail about the process and had to fill out extensive paperwork regarding my current health and daily activities. I had to provide dates and names for all medical procedures since my original filing and sign multiple medical release forms. I spoke with my ENT at that time and he said he would help in any way possible since he felt that there had not been significant enough change in my medical situation to warrant a denial of benefits. Since there is a place at the end of the required forms for additional information and comments, I included his remarks and recommended they contact him directly, per his suggestion; I even included his office telephone number. I mailed it out in a timely fashion, confident that there would be no problems. I did, however, make copies of everything, which turned out to be a good thing. About two months later I received another fat packet of papers with a cover letter stating that they were conducting a review, materials had been requested and unless I complied, my case would be decided without the updated information. I re-copied everything, re-signed the medical release forms (they must be originals) and sent the whole thing back with a cover letter of my own. I followed that up with a call to the local SS office, although the best I could do there was to leave a voice message with a caseworker I never met. I was soon to learn that the relatively simple and expedited process I had encountered when I initially filed for benefits was an anomaly!
 
Operating under the impression that no news is good news, I had practically forgotten about the review when about nine months later (with NO contact by the office to either my doctor or the other references they requested), I received a letter stating that my disability benefits were terminated, retroactively, and that I owed them money, since I was no longer disabled! There was, however, an appeals process. I notified them in writing, by mail AND fax (I decided to take no chances this time) that I intended to appeal the process and that I wanted my benefits to continue during this process. This is an option pending your review appeal, however, they warn you that if your appeal is denied, you may have to pay back those benefits, as well.
 
I again spoke with my doctor and he was incredulous. His comment was, "Why don't they just interview you? They could see for themselves." This proved to be prescient, since it was the actual face to face interview with a hearing officer that finally overturned their denial. This interview, however, took place about 18 months later and cost me $1500 in attorney's fees and countless sleepless nights.
 
To be fair to the SSA, I did move from Massachusetts to Maine during that time and the Maine office wanted me to re-file all the information. However, I up-dated that each time and since I still had my ENT at Lahey in Massachusetts, we had continuity of care and records. The Maine office was easier to reach and I actually had a caseworker, I spoke with several times, who was thorough in following up if he needed additional information.
 
In December of 2006, I was notified that once again, my appeal was denied; however, I could request a hearing where I could provide additional information and bring witnesses to support my claim, including medical testimony. I could also have legal representation. I requested a hearing. I also got a lawyer. Initially, I asked my brother if he would come with me and it was he who suggested an attorney. He gave me the name of a local attorney recommended for this type of thing and it was the best advice I have been given in a long time. Perhaps, I should say, it was the best advice I have heeded in a long time!
 
My attorney specializes in SSD. He told me that reviews are almost always initially denied; as are initial applications. I WAS an anomaly. He also said that hearings are about 90% unsuccessful, but that a third and final appeal process is an option which involves going before a judge where witnesses from both sides are under oath and the judge makes the ruling. A hearing is much more informal and is held before a SSD hearing officer. In my case, it was in a small office about 30 minutes from my home.
 
The officer does record it and you swear to be truthful, but it is really just a question and answer session, where you are allowed to freely comment. We were there a little over an hour. My lawyer said that, oftentimes, a client doesn't even attend in person since their physical presence does not reflect their disability status. Having sat through several of my coughing spells in his office, he suggested that I attend my hearing. I was sorely tempted to eat a granola bar just before the proceedings, since they often precipitate what we call here in Maine, "wicked bad" coughing! As my brother so delicately puts it, "What a way to clear a room, Sis!" [I did NOT resort to subterfuge].
 
Nor, as it turns out, did I need to. My attorney was able to pull together all the medical records, including, finally, a statement from my doctor to bolster my case. He went with me to the hearing and I am convinced that his presence was a critical factor in receiving notification 5 weeks later, re-instating my disability status and maintaining benefits.
 
Needless to say, I was enormously relieved. However, I still felt this nagging doubt that perhaps SS was not done with me quite yet and, unfortunately, I was right. So this past week, I was right back in lawyer's office, signing paperwork for another appeal. Turns out they want some of their money back, after all. Furthermore, I learned, SS regularly overpays benefits and then comes after that over-payment months or even years later...even when it is their fault...but there is a series of appeals for that, too!
 
But all that is another story, for another column, another month. Stay tuned!
 
Donna
 

 

   WebWhispers Columnist
                                                                                  
Contribution from a Member
 

 

 

Meeting Mr. Death in Pakistan

Noor Ali G. Haider
Karachi-Pakistan
 

 

Do you want to make friends with Mr. Death? Are you ready to die a slow, lingering and painful death?
 
Yes, some of you are ready to die from an irreversible disease wherein death is guaranteed. So here is the easiest way. Just develop the habit of chewing Pan Masala or Gutka regularly and you will succeed in meeting Mr. Death.
 
Here are some questions and answers about our "Deadly Friend": Pan Masala

Q. What is Pan Masala, Gutka?
A. Pan Masala = Powdery mixture of betel nut, lime, areca nut (Supari) in various proportions.
 
Q. Which class of people eat pan masala? Who are the persons affected by this habit?
A. Nowadays eating pan masala has become a "Status Symbol". This habit is common in all socio-economic classes.
 
i) A laborer it to take rest from his work and to freshen up.
ii) A high-class executive eats it to show how "modern and advanced" he/she is....
iii) A school-going kid eats it as an experiment, or just to copy his parents.
iv) The housewife eats it after a day's cooking and after food.
v) College boys eat it to make a time-pass at "nuked".

 

So in the end, everybody falls prey to this temptation of so called "freshening" his/her mouth with this "slow poison".
Q. Is Pan masala a real "Slow Poison"?
A. Yes, According to various studies carried out at National and International levels, it has been proven that pan contains "Mutagens" which can change our normal tissues into cancer tissues, and can cause a progressive disease called, "Sub Mucous Fibrosis" (SMF).
 
Q. What is SMF? How does it happen?
A. Sub Mucous Fibrosis... i.e. a permanent thickening and hardening of the inner lining of the mouth. The various materials used in pan masala causes irritation to the mouth, which gradually leads to thickening and hardening. Then, gradually, the mouth opening decreases and a day comes when the victim will not be able to open his mouth at all.
 
The tongue will lose its roughness and will become smooth and white. Taste sensation will be lost and spicy foods will not be tolerated. All these things happen slowly and progressively but are guaranteed to happen.
 
Q. What is more dangerous then SMF?
A. Oral Cancer. Because SMF is a precursor to oral cancer, the habitual chewer has a 400 times greater risk of getting oral cancer. Surely, all of you are aware of the fatality rates of oral cancer.
 
Q. Can we prevent SMF?
A. Yes (only in its early stages). Stop the chewing habit and SMF will leave you.


Q. How can "Plastic Surgery" help patients with Sub Mucous Fibrosis?
A. In patients with established SMF, the mouth opening is restricted and the inner lining is permanently damaged. These problems can be treated by the various plastic surgical techniques listed below.
 
i) The hardened bands can be removed surgically.
ii) The wider area of thickened tissue can be removed and new skin can be placed there by a plastic surgical technique called "Excision and Skin Grafting".
iii) Whenever surgeons want to give the patient, a soft, moist, pliable cover, and then a special procedure of making use of a portion of the tongue to cover the cheek has to be done - a "tongue in cheek" or a "Tongue Flap" operation.
iv) Similarly, the excess skin from the outside of the cheek can be placed inside the oral cavity by an operation called - "Nasolabial Flap" surgery.
v)Injections of steroids into the hard tissues are also helpful.
vi)Creams and jelly for local application and massage are of a temporary nature.
 
All these operations are to treat the complications caused by pan masala.
 
To prevent recurrence of SMF you have to give up this habit permanently and immediately.
 

 

 

 

 

 

 

Let Me Tell You How I Got Here...

Part 3

Bruce "Buck" Martin
 
Here it is “next month” already and the editor’s deadline is much too close as I begin to write.  As they say, time really flies when you are having fun.
 
When I left you last month, I was just home from consultations at the cancer center and I had made my decision for total-laryngectomy surgery as my primary treatment option.  The previous month had been an exhausting journey as I sought counsel from a variety of sources.  Now that the decision had been made I felt a huge sense of relief.
 
 It was December 2nd, 2006.  The holidays were rapidly approaching and, like most everyone else, we were busy trying to get ready.  Christmas would be different this year for my family. This year would be the first Christmas without Mom and Dad.  My Dad had passed away the year before, and Mom died on my birthday in July of 2006.  Every year for as long as I could remember we had gathered to celebrate Christmas at home with them.  Mom and Dad both lived long lives and, due to deteriorating health, neither of their deaths were unexpected.  But no matter how “expected”, or how much one prepares, the loss of a parent or loved one is still very difficult.  Christmas would definitely not be the same.
 
We would be staying here at the farm in West Virginia for the holidays and were anticipating family members coming to stay, some from as far away as Nicaragua.  My wife, Diane, has four sons from a previous marriage.  Her oldest son, Will, would be coming from Nicaragua and bringing his wife, Vanessa, and the brand new grandson, Max, who was born in October, 2006.  Her #3 son, Morgan, had recently relocated to Morgantown, WV and would be coming to the farm with his wife, Lisa, and grandson, Carter, who was born in February, 2006.  Diane was so excited she could hardly stand it. Two new grandsons to spoil, to dote on, and to buy presents for.  Wagons, ponies, and…
 
I was putting on a good face as the holidays approached but inside, I was full of anxiety and turmoil.  My surgery was scheduled to take place on January 11, 2007, and I was having a very difficult time dealing with the waiting.  I was experiencing a tremendous amount of “buyer’s remorse”.  Did I make the right decision? Could I still change my mind?
 
A lot of the anxiety and turmoil was generated by the fact that I did not feel the least bit sick.  I had just made a decision to have my throat slit from ear to ear, my voice box removed, a hole put in my neck to breath thru and some device, called a TEP, put in my neck to allow me to learn how to talk again.  All this and I don’t even feel sick???  So, inside I was feeling depressed, anxious, and scared, while on the outside I was putting on a happy face and pretending to get in the holiday mood.
 
For several weeks I continued in this vein, vacillating between scared to death on the inside, pretending to be happy on the outside.  Then, on the Friday before Christmas, I was driving down the road near the farm, on my way to town, and saw my neighbor Nathan out at the end of his driveway.  I pulled over to talk to him and find out what the latest gossip was in our neck of the woods.  After the normal “hellos” and greetings, he said, “ Did you hear about Randy?”   I replied, “No, I haven’t heard anything.”  He then informed me that our 42 year old neighbor, Randy, was dead.  Only 42 years old, successful business man, with a lovely wife and family.  Dead. He and an employee were pulling out of the bank parking lot onto a busy street when, unbeknownst to him, a semi-truck was running a red light just a short distance away.  The semi-truck ran over Randy’s vehicle, killing him instantly.
 
I finished talking with Nathan and headed on down the road towards town.  It was at this point that I had an epiphany of sorts.  As I thought about what Nathan had just told me, and I thought about Randy and his family, I began to cry.  I cried uncontrollably and, at one point, I pulled over and stopped on the edge of the road to let the tears flow.  When I had settled down some emotionally, I continued to town and did my errands.  Randy’s death was the sole topic of conversation in the small town near my home.  Word travels fast in a place like this. 
 
I live in a county in West Virginia with only about 4000 residents.  It is the only county in the state that has zero traffic lights, and we have one barbershop with two chairs.  Haircuts are 5 bucks on weekdays and 7 bucks on Saturday.  I finished my errands and headed out of town towards home.  Once again I was overcome by emotion.  Once again the tears flowed. My mind kept flashing back and forth between the tragedy of Randy’s death, and the absolute devastation his family was feeling, and my own fear and anxiety of what I was currently facing.
 
At some point it dawned on me how lucky I was.  I realized that life can be so fleeting and that we do not get to choose our destiny.  The farthest thing from Randy’s mind that day was dying underneath a semi-truck.  The last thing on Randy’s wife and children’s minds that day was spending the Christmas holidays grieving the loss of a husband and father, and making arrangements to lay him to rest.  I began to understand how blessed I was to be alive, to have loving and caring family and friends, to have the best medical care in the world available to me, and to be alive and not feeling the least bit sick.    As I began to seriously think about how fleeting life can be, and that it can all be over in the blink of an eye, I felt the stress, anxiety, and fear begin to dissipate.
 
Between the time of my diagnosis of vocal cord cancer and my decision on December 1st to have surgery, I had sought out the best medical advice I could find.  I availed myself of the counsel of family and friends, and I spent many hours on the Internet doing my own research into this type of cancer and the various standards of treatment.  After returning home that day bearing the news of Randy’s death to my wife, I knew without a doubt that I needed to re-focus my thoughts.  I needed to “count my blessings”, and count them frequently.  I had made my treatment decision, and I had made it with confidence in the people who had guided me to the decision, and I was confident in my own knowledge of my condition and the options available.  I was not going to change my mind, and I was not going to waste any more energy obsessing about the correctness of my decision.  I was going to live each day for what it was worth, and I was going to begin to invest my energy into researching and understanding what life was going to be like from the moment I awakened on January 11th, 2007 as a new laryngectomee.
 
Family arrived and we had a grand time.  Laughing and talking and doting over the grandsons.  We cooked fantastic meals and sat around the fireplace to tell stories and reminisce.  We went for long walks.  We went to the high meadow behind the house,  found a beautiful Christmas tree and chopped it down to carry home.  It looked and smelled wonderful in the corner of our living room and was lovingly and beautifully decorated.  Before we knew it the holidays were ending and everyone was packing up to head back to their homes.
 
Once again the house was back to “normal” with just Diane, Jeff, and me.  January 11th was getting closer, but it still seemed like a long time away.  It’s amazing how time can drag depending on what the motivation is.  In this situation, my wish would have been to make my surgery decision and have them roll me immediately into the operating room.  But that’s not how it works.  So, as the day slowly approached I continued to remind myself daily to “count my blessings”.  I also spent a lot of time everyday on the Internet researching my condition and looking for any information I could find relating to laryngectomy surgery and “life after” laryngectomy surgery.
 
I am not sure of the exact date, but I believe it must have been January 1st or 2nd  that I finally found what I was looking for.  I don’t remember exactly how I found it, but that’s not really important.  What is important is that I did find it.  The “it” that I found was a place on the Internet called WebWhispers.org.  The tears are rolling down my cheeks as I write these words and remember back to that day. I could not believe my eyes as I began toggling thru the menu options on the WebWhispers home page.  I was immediately attracted to the “Library” section.  I began reading starting with the “General Information” section, then on to the “Common Concerns” section, and on down the list. In the next day or two I read nearly everything on the site available to non-members.  I was so excited, and nearly drove my wife nutty as I constantly called her over to the computer saying, “Honey, you have to read this.”  Or “Honey, come look at this one…..”.
 
If the death of Randy had stopped me in my tracks, made me realize how precious life is, and caused me to refocus and count my blessings, then. finding WebWhispers completely removed any remaining anxiety about what I was getting ready to face.  WebWhispers made me feel like I was being cradled in the arms of angels.  So, on January 3rd, 2007,  I became a member of this fine organization, and for the next eight days as I awaited my surgery WebWhispers became my lifeline. 
 
Knowledge is power and there is so much knowledge, experience, and wisdom on the WebWhispers website and thru the email interactions of its members that I did those eight days standing on my head, with little anxiety.  No anxiety would be a lie.  No one faces going under the knife and putting your life in someone else’s hands without some anxiety and trepidation.  That’s normal.  But when you do it with the support, knowledge, experience and caring of so many that have gone down that road before you it makes all the difference in the world.  If I had magical powers and could make wishes come true, I would wish that every laryngectomee and every prospective laryngectomee, would have high-speed internet access, be computer literate, and be an active member of WebWhispers.  What a difference it would make in so many lives.
....to be continued next month.......
 

 

 

 

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 36 new members who joined us during April 2007:
 

Anita Bayler - (SLP)
Indianapolis, IN
Pamela Blake - (Caregiver)
Oak Hill, WV
Mark Brouillet
Carmichael, CA
     
Marie D. Brown - (SLP)
San Francisco, CA
Lynn Bullard - (SLP)
Statesville, NC
James M. Bush
Richmond, MO
     
Zina K. Bush - (Caregiver)
Richmond, MO
Jan Carleton - (SLP)
Bangor, ME
Wolfhard Didlaukies
Arcadia, FL
     
Fay Flanary
Belchertown, MA
Lisa Flutot - (Caregiver)
Escondido, CA
Billy Fowler
Ringgold, GA
     
Patricia Gomez - (SLP)
Daly City, CA
Michael Heusdens
Racine, WI
Louis S. Holtman
Poughkeepsie, NY
     
Rita B. Keller - (SLP
Lafayette, LA
Sharon Khoo - (SLP)
Waldorf, MD
Louis LaGattuta
Woodside, NY
     
Mary Ann Vaca-Lambert
Austin, TX
Rose Marie Larsen
Houston, TX
Roy Lewis
Brisbane, QLD, AUS
     
Maralyn R. Lipner
Simsbury, CT
Henry Martin - (Caregiver)
Muscle Shoals, AL
Sheila Martin
Muscle Shoals, AL
     
William Neeriemer - (SLP)
Asheville, NC
Michael Nelson
0en, England
Ashley Paseman - (SLP)
Manlius, NY
     
Patricia A. Rush - (SLP)
Jackson, MS
Virender Sharma
Canton, MI
Joan Sharpe
Lancaster, England
     
Rilla Simmons - (caregiver)
Richmond, MO
Jim Skeoch
La Quinta, CA
Terri Skeoch - (Caregiver)
Cambria, CA
     
Amanda Soltani - (SLP)
Galveston, TX
Kirk Swanson
Edmonton, Alberta, Canada
Daniel Yong
Penang, Malaysia
     

 

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

 

 

Disclaimer:
 
The information offered via WebWhispers is not intended as a substitute for professional medical help or advice but is to be used only as an aid in understanding current medical knowledge. A physician should always be consulted for any health problem or medical condition. The statements, comments, and/or opinions expressed in the articles in Whispers on the Web are those of the authors only and are not to be construed as those of the WebWhispers management, its general membership, or this newsletter's editorial staff.
 
As a charitable organization, as described in IRS § 501(c)(3), the WebWhispers Nu-Voice Club
is eligible to receive tax-deductible contributions in accordance with IRS § 170.
 
  © 2007 WebWhispers
Reprinting/Copying Instructions can be found on our WotW/Journal Index.