|Name Of Column
||Officers,Volunteers & Donors
||News & Events
||Joanne Fenn, M.S., CCC-SLP
||Learning Esophageal Speech
||Favorite Places & Things
|This Lary Life
|Travel With Larys
||Mediterranean Cruise, Part I
|The Speechless Poet
||Len A Hynds
||Crying of the Gulls
||Prose & Poetry
|Bits, Bytes & No Butts!
||Holiday Shopping & Your Privacy
INDEX AND LINKS TO EACH ISSUE MAY BE FOUND AT: http://webwhispers.org/news/WotWIndex.asp
OFFICERS, VOLUNTEERS & DONORS
Another election has just gone by without changes. We hold these elections every year because the bylaws tell us to. At the time these bylaws were written, we thought the terms should be two years, but staggered the terms so we had continuity, which is still not a bad idea. I finally worked up standard letters for the notices and put them in a section of the site under Elections to make them easy to find for continuing to follow the bylaws, which give a surprisingly good layout for us to follow in assigning responsibility for areas of WebWhispers that these officers work with.
We are all grateful for the volunteers who work on a daily basis, keeping us going by managing or participating in different areas of WW and the others who volunteer for special events, such as working the WW Table at the IAL annually. We have become a big nonprofit business, run entirely by volunteers. It is amazing.
The donations that pay the bills give us our sustaining memberships and those finance the firms that keep our website going, handle all of our list emails, and give us the forum set up. If we can find more ways to do the farming out of any section of work, with us constantly supplying the information, we would do it. Stacy, who works with us here on getting our newsletter online is our latest addition of a contractor who works with us on certain jobs that used to be done by our previous webmasters. There is never enough time to do everything, and we hurt badly when we lose key people.
For this particular section of WebWhispers, our newsletter, we have some wonderful volunteer members who write or manage their own column heading and we have others that send in occasional articles. Our Speaking Out column has brought us a larger contingent of members giving their opinion and/or experiences about selected topics.
I had not mentioned names here because I would hate to miss one person who has helped us in any way. I am just Thankful for all of you and would be delighted to hear from any others who want to help in any department.
LEARNING ESOPHAGEAL SPEECH
Joanne Fenn, M.S., CCC-SLP
Swedish Voice and Swallowing Disorders Center
Swedish Medical Center, Seattle, WA
Communication has always been important to me. I had my larynx removed at the age of 3 in the midst of learning a burgeoning vocabulary, and with an escalating intent to talk and connect with my world. It would be several years before I would master a new voice. Eventually I regained it in the form of Esophageal Speech (ES) which I have used since. Shortly after acquiring my new esophageal voice, I attended my first IAL Convention in San Francisco at the age of 5. It was terrifying to stand up in front of a large crowd, have to be interviewed and recite "Three Blind Mice" with my new esophageal voice. But that experience has shaped my life since then in many ways.
Fast forward to the mid 1980s when I became involved in the IAL and returned to graduate school for my Master's in Speech Pathology. At the time, I had no idea what I was doing to produce ES! While it is still automatic, much as normal voice is for the laryngeal speaker, I now understand the mechanics of ES, and have been fortunate enough to start some folks down the road to acquiring it themselves (including, dare I say, some laryngeal speakers).
I feel that I have been witnessing a resurgence of interest in learning ES from the people whom I encounter every year at the I.A.L. Voice Institute, and also in my own patient population. In fact several of my patients who had a primary TEP done at the time of their TL, and who had good TE voice results, subsequently chose to learn ES and stopped using their TEP.
There is a paucity of research, particularly recently, on ES in the TL literature. The acquisition rates reported in a variety of studies vary greatly. Reports indicate an average of 64% success, but with a large range of 25%-90%. In a 2004 survey of 239 laryngectomized individuals, Palmer and Graham found that 55% were artificial larynx users, 20% were esophageal speakers, and 17% were TE speakers. However they also found that 19% used a single method, a surprising 56% used 2 methods, and 25% used all three methods of alaryngeal communication. A Japanese study published in 1993 looked at voice restoration in 110 patients via direct interview. They reported that 80% of patients attended esophageal speech classes, with a success rate of 78%; 74% of who reported no difficulty with daily communication using esophageal speech. This may speak to regional differences, but also may imply there is benefit to regular, structured practice, and perhaps to practice in a group setting.
Production of esophageal voice, as with all methods of alaryngeal and laryngeal voicing, requires the following:
1. An energy source (AIR is the energy source for laryngeal, esophageal and TEP voice).
2. A vibratory source (ESOPHAGEAL TISSUE is the vibrator for ES and TEP voice).
3. A resonating chamber (UPPER VOCAL TRACT is the resonating chamber for all methods of alaryngeal and laryngeal voice).
4. A method of articulation (LIPS, TONGUE, TEETH, ORAL CAVITY CONFIGURATION are the structures used for articulation for all methods of alaryngeal and laryngeal voicing).
In production of esophageal voice, one must overcome resistance of the upper esophagus and create pressure to allow air to enter the esophagus, be trapped briefly, and then expelled to vibrate the tissue for sound. The methods for creating pressure to allow air to enter the esophagus are frequently referred to in the literature as:
1. Standard Injection or Glossopharyngeal Press Method – This method involves using the tongue and oral cavity (typically the roof of the mouth) to force or ‘press” air down.
2. Consonant Injection Method – This method involves use of plosive or pressure sounds which are made by forming a point of constriction and force air back and down. Frequently used sounds to attempt to elicit initial esophageal sounds are /p,t,k,sk, ch/.
3. Inhalation Method – This method involves use of a quick inhalation or gulp to create pressure from the lungs on the esophagus which then causes air to enter the esophagus.
(Permission to re-print provided by InHealth Technologies, Carpinteria, CA.)
Moving from initial esophageal sound to functional speech can be a lengthy process but is achievable for some patients. Acquiring or mastering ES typically takes time, in my case it took at least a year to become fairly proficient. It also takes motivation and a great deal of regular practice. As a child learning ES, I was a captive student and was forced to sit down and practice for at least an hour daily for many months. And like learning any other complex motor activity, think skiing or golf here, it requires being relaxed physically and mentally, patience, and self-compassion. Finally qualified instruction will allow you to learn and progress at a reasonable rate, while avoiding the bad habits that often accompany trying to push to speak too much, too soon, and too loudly.
The goals of ES, despite the method or methods air intake, should be consistency of voicing, short latency of air intake, appropriate duration of sound, acceptable quality of sound, good articulation and intelligibility, appropriate rate of speech, and an absence of distracting behaviors. The parameters for these goals are listed in several articles in the reference section.
Not every person who has had a total laryngectomy is a good candidate to be able to learn ES. There are a variety of reasons why they may not, and related contraindications. Discussion of this is beyond the scope of this article, but there are, again, excellent references listed at the end of this article which will lead the reader to further exploration of these contraindications.
The pros of ES over other methods are obvious. It is hands free, and does not require additional surgery or prosthetic management. Some of research has shown that compared to AL and ES, TE speech production is characterized by better speech quality, longer phonatory duration, and louder voice. The AL remains a very viable option as well, either as a stand-alone method of alaryngeal communication, or as a backup and alternative method. Despite this, again anecdotally it appears that some TE speakers are electing to learn ES.
In summary, Esophageal Speech is an excellent choice of alaryngeal communication for some patients. With qualified instruction, motivation, practice, patience, and good instruction that has objective knowledge of candidacy.
Intent to communicate, as is the case with children learning vocabulary and language, is also paramount. If a person was not all that talkative prior to their surgery, or withdraws after surgery, they may lose the interest and motivation to communicate via any method. Patience, self-acceptance and compassion are hallmarks of learning any new motor activity.
Take advantage of any and all resources when you embark on your journey to learn ES. Some of these resources include speaking with members of your local clubs, the IAL VI Directory of Instructors, attending an I.A.L. Voice Institute, contacting mentors in the field, your local VA, on line resources and video instruction.
BEST OF LUCK ON YOUR JOURNEY!
I first wrote this column three years ago but it still resonates with me. Some things have changed. I now have two beautiful granddaughters and I am thankful every day for them and the joy they add to my life just by being around them. My parents no longer go to Florida but I am thankful they have happily relocated to a retirement community near here where they are thoroughly enjoying themselves and delight in frequent visits from their two great-grand-daughters. And although this year I am writing this a week before Thanksgiving I am anticipating being thankful for the family feast which awaits us and, of course, those treasured leftovers.
During this holiday season it matters little how or even whether you celebrate any or all of them. What matters most is that there is something in your life you can be thankful for and that it brings you some comfort and joy.
It is 3AM the morning after Thanksgiving and I am feeling thankful. Thankful is a lovely word and it expresses such a wonderful emotion. I like its humility and simplicity. There’s no guilt in thankful, unlike grateful, for example and there’s none of that smug pride, which is so loathsome and somehow always sneaks in with satisfaction. It is a good, honest, hardworking emotion and one I suspect the Puritans earnestly felt that first Thanksgiving.
As I sit here, listening to the predicted sleet and icy rain chatter against my windows, and enjoying the warm glow of a fire, I am thankful for propane fireplaces which burn cleanly, efficiently and don’t produce either smoke or ashes. I am especially thankful for that right now because the reason I am up at 3AM is another asthma attack. However, I am also thankful for a new regimen of meds which seem to be helping to reduce the intensity of these scary episodes.
I am thankful that this time I am not making another 35 minute drive to the ER, dodging skunk and deer. The last midnight run tallied at least 3 skunks and 5 deer and I missed them all, but it was close! It was rainy and windy that night and this being Maine there were leaves swirling and all back roads with no street lights. I was abjectly thankful that night when I saw the lights at the entrance to the hospital.
I am thankful for the kind ER nurses and doctors who recognized my distress and gave me lots of good drugs, which relieved my breathing issues but left me shaking and trembling like a junkie. And as it turns out - there is a drug for that, too! Better living through pharmaceuticals and yet another reason to be thankful.
I am thankful for modern medicine, a warm house and reliable transportation. As I watch the news and look around me, I am thankful for clean drinking water and relatively clean elections. I am thankful for democracy, even if it is messy and unpredictable and the results aren’t always to my liking. I am thankful for the right to vote and to know that my vote counts.
I am thankful that my beautiful and smart little grand-daughter will be able to go to a good school and be whatever she wants when she grows up. I am thankful for a lovely local library with story time for toddlers even if she is still unclear on the concept of sitting still and listening rather than socializing.
I am thankful that my 80-something parents can still go to Florida, play golf and swim and enjoy being great grand-parents. I am thankful for four generations of family.
I am thankful for WebWhispers and the friendships it has forged.
But I am painfully aware that things change - sometimes in a flash. All can be lost in just a breath. I am thinking that the greatest sin might be complacency. So I am truly thankful right now for those connections which endure, family, friends and …. leftovers!
Turkey sandwiches with cranberry sauce and stuffing on home-made rolls with pumpkin pie and ….I need a moment to be thankful, please. Oh, there’s cookies and cheesecake and spicy pecans….I am SO thankful!
Favorite Places or Times
Anita Lewis, Motorhome - 2010
My surgery was in 2010 and at the time I was told by my doctor that I needed to be in an area where the altitude was at sea level. At the time we had property in the mountains at 8200 feet, and had no idea where I would want to live. My husband and I decided to buy a motorhome, sold our house and down sized so that we could live in our motorhome full time. It was the best thing we could do for ourselves. Our kids were all grown and had their own busy lives and no longer really needed us around on a full time basis.
Our first trip was to the Kansas City lary convention, which was the best and helped me more than I can express. We then went up and visited friends in Minnesota, took an extended trip through South Dakota and saw some really beautiful areas of our country. Since then we have been on the road for 2 years. We have volunteered for some of our wonderful state parks in California, Utah and several in Oregon. I have had more fun in the last 2 years than I have in a long time.
I use an EL as my voice and I have interacted with lots of people and the most wonderful ones are the children. Children are the most honest and most accepting people, I have had many reactions to my voice and most very favorable from the children, some believe I'm a robot or that my EL is a toy and I had one young boy ask me where I got that because he wanted one too, because it was so cool. My feeling is that no matter what, these children will always remember the park or campground where they met the woman with the strange voice. Life is great you just need to make the best of it and enjoy it all.
PATRICK E. KERR, Miramar, FL - June 2011
My favorite place is the Grand Canyon, and hiking to the river and back is one of my favorite things which I have done (three times). The canyon is an exemplar of the definition of "awesome."
PATRICK E. KERR, Class of 6/11, Miramar, FL
Dick Strauss, Elk Grove Village ,IL.- February 2007
Three years prior to becoming a lary, my lady friend and I went to the Dominican Republic for a vacation and while there, we signed up for a swim with the Sharks and Rays. The swim took place in a caged area about 60 feet in diameter and 15 to 20 feet from sea bottom to the surface.The sea animals would swim close enough so that they could be felt which to me was amazing after seeing all kinds of harrowing programs of people being attacked by these sea animals, Obviously these were not those predators .It was a super great experience, something that I can't ever do again.
Elhi Hernandez, Puerto Rico - January, 2013
I’m a rookie in this league. I live in Puerto Rico an island, US territory, in the Caribbean. I’m planning to move to Orlando FL in about 4 months and will like to meet Larys in Orlando. My favorite place that I have been is Costa Rica, lived there for 3 yrs. Beautiful places, nice climate and very good people.
Bob Bauer, Hayward, CA - Class 2008
My wife Mollie and I have traveled the world a fair amount, but my favorite place was the Galapagos Islands.We spent 10 days there and visited 8 islands. It was a National Geographic cruise, a bit pricey, but well worth the money. The guides were locals from the islands so their information was very interesting and informative. One interesting tidbit was that Darwin only knew of 5 species of Finches where there are actually 13 species.
The islands were great with all the different animals and sea life. You can get so close you could almost touch them, but that's a No-No. The sea lions were very playful with the kids in the water at the beach. I was able to get a video clip of a young pup frolicking with a couple of kids.
I highly recommend this trip so save your pennies and make the trip.
I posted a self-portrait of me snorkeling in WW under activities/swimming. Between me and my wife taking pictures we wound up with an album of 300 photos.
Harry Wintemberg, Ormond Beach, FL - Lary class 1982
In December 1944, I was part of the 87th infantry division fighting in Belgium. We had captured several German soldiers on bicycles. I took one of the bicycles and gave it to a 9-year old Belgium boy and really made it a glorious Christmas......freedom from the Nazis and a new bike!! Well, this 9-year old kid, now in his late 70s, and I, have exchanged letters and Christmas cards every year since. He has also written a book, "Little Known Front" wherein he had me write a chapter on our experience in his small Belgium town and the story of the bicycle. Out of the misery of war came one of the happiest and favorite experiences of my life.
Richard Crum, IN -
My friend Jan and I have made two trips to Ireland. Ireland is such a beautiful country with much to see and do. The people are great and the country side is breathtaking.
Marian Cure, Cedar Creek Lake, TX - 2009
I sometimes think it’s the ambience and the people you are traveling with that makes a location a favorite. With that in mind, I suppose a favorite of mine was staying for a week in a cabin that actually hung over the Pecos river in Pecos, NM.
Our daughter and son in law stayed with us and we cooked all meals in the cabin. We played games, read books, talked, laughed and my husband, who had just had his pacemaker put in, was able to fish from the covered deck. Hubby didn’t even have to take the trout off the hook as son in law took good care of him. Priceless!
Our company had taken us to many exotic places abroad and in the states for the last 50 years but this simple cabin topped them all. We were allowed to bring our two dogs and those who are animal lovers know how important that is. Our country has so many beautiful places that can rival places like England and Ireland so I would encourage folks to give it a try if Europe isn’t an option for you.
Bob Keiningham, Broken Arrow, OK - September 2008
If you love adventure, Capetown, S. Africa ... if you love fishing Kenai Peninsula, Alaska ... if you love history, London, U.K., ... if you love golf, Pebble Beach, CA ... if you love gaming, The Venetian in Las Vegas ...If you love scenery, Vail, Colorado ... if you love excitement, New York, New York ... If you love the ocean, Big Sur, California ... but, for me...
My favorite place in all the world is right here in my home around Christmas time with the love of my life Shirley Marie, our four daughters, their husbands, ten grandchildren, a couple of grand-son-in-laws, our new great granddaughter Avery, and (of course!) my dog Sonny boy ... trust me, there just "ain't" no other place on earth that I love as much! Happy Holidays.
Len A.Hynds, The Speechless Poet of Ashford, Kent, England - 2004
At the age of 58, I had retired from the police, and was running my own business of supplying the car repair trade with replacement parts, and was extremely busy. Each week-end and for holidays I liked nothing better than cruising the rivers and estuarys of England, with the occasional trip across the channel to France of Belgium. I loved the leafy rivers and wonderful views in my own country. But also the excitement and adventure of the many moods of the sea.
Then one night in 1988, a serious pain in the chest and arms required my hospitalisation. No heart attack, but my aortic and mitral heart valves were leaking, and I was going to need a by-pass. I was taken in, 6 years after that first diagnosis as an emergency, and I prepared for the worst, as open heart surgery had only just started a few years before. I recovered after an eight hour operation with American metal self cleaning valves being fitted , and a by-pass, and emerged feeling like a young man again.
Imagine my complete surprise, on being taken to my beloved, unused, ‘Pelican’ moored on the River Medway, to find her refurbished and cleaned, and I steered the family on a wonderful journey down that everwidening river to the sea.
My boat seemed to know that I was whole again and she performed perfectly.
Chehalis, WA - 1992
My favorite place is Lake Chelan, WA
David Kinkead. Phoenix, AZ - July 29th, 2013
In early 2007, I had planned a trip to Mt Rushmore in South Dakota with my dad. He was advancing up there in age and this was one thing he had always talked about doing. For various reasons we were not able to take this trip. Unfortunately, my dad passed away early in 2008 and never had the chance to see Mt. Rushmore. In 2010 I decided I would go visit Mt Rushmore in his honor. I had always wanted to see it. My wife and I made the trip in May and it was wonderful. We flew up to South Dakota early one morning and spent the rest of the day exploring the Badlands National Park. After checking into a little cabin in the woods in the town of Keystone, we went directly to Mt. Rushmore. As we walked up the long flag lined walk to the viewing areas, all I could think about was my dad. I got teary eyed and knew I had finally realized one of his dreams and mine. We spent four full days in the Black Hills of South Dakota doing all the things I had planned to do with my dad. There is so much more to do there than just see Mt Rushmore. As we were leaving the area, I knew I would never be back but it was one of the most enjoyable trips I have ever taken.
Carl Strand, Mystic CT - February1993
My favorite place in the summer is Southwest Harbor Maine. My late wife and I discovered this part of Mount Desert Island some twelve years ago. We returned every summer until her death and I have continued to do so since.
This is the "quiet side" of the island, with Bar Harbor and all the touristy things on the other side of the island. The Island Explorer, a free bus service, runs all over the island on a very regular schedule, so if you wish you can park your vehicle and leave the driving to others. There are boat trips, gardens, hikes (if you're so inclined), museums, restaurants galore, and scenery that won't quit. Acadia National Park is a very special place and a real treasure for those of us who live in the Northeast.
I usually spend a couple of weeks in late July or early August, take my RV up there to one of the campgrounds, and make it as busy or relaxing a time as I feel like.
SINCE RETIREMENT AFTER LARY, WE FOUND CRUISING FOR US WORKS BEST. WHERE WAS BEST, WE AGREED... NEW ZEALAND IS TOPS. N. RIVER. EURO CRUISING WITH OTHERS, AS LARY. ... ENJOYED. CANADA WITH WW. GROUP. GOD BLESS. WITH LOVE. JIM N DEE MALONEY... ALSO. IRELAND, OF COURSE
Evansville, IN -
By far, the favorite place my wife and I have been since surgery was China. In 2011 we spent 10 days in Beijing and Xi'an and loved it.
The least obvious reasons for it being our favorite was the unexpected opportunity to go. We were in the midst of planning our 1st wedding anniversary trip to San Francisco when I saw an advertisement in our Sunday paper for an escorted tour to China. The quoted price was so inexpensive that I thought it was a misprint; just for laughs, I called to ask about it. As it turned out, it was NOT a misprint and I immediately signed us up!
A second reason for it being our favorite was just being able to visit a country that until fairly recently was off-limits to westerners. Neither of us had ever imagined being allowed to visit the Great Wall when we were growing up and to be able to visit seemed so extraordinary.
An obvious reason was the timing of the trip: only 16 months after my total laryngectomy. We got very lucky with weather and did not have to deal with the levels of air pollution that made the headlines this year, but Beijing is not very far from the Gobi Desert and the air was VERY dry. The long flights were more tedious than anything else.
It is also our favorite because of the one-of-a-kind things we saw and experienced while we were there. We walked the Great Wall. We saw the Terra-Cotta Warriors. We stood in the courtyard of the Forbidden City. We had a home-cooked lunch with an artist and his family. I attended a Chinese cooking class in a professional culinary school. Not surprisingly, every meal we ate far surpassed any Chinese food we had ever eaten before.
We've also taken other long-distance trips since China. We've taken two vacations to Europe, have booked a third trip and are in the planning stages for a fourth.
The sights, sounds, tastes and experiences were truly wonderful and gave my confidence in being able to travel again an enormous boost. The success of taking such a long trip was the best reason it is my favorite: it convinced me that I could indeed contemplate getting back to my nomadic working life of pre-surgery days. Which I did, and I have been back to work since February of 2012!
To finish these special places, we have an old timer with us who has traveled a lot and he wanted to be anonymous because he wanted to know what to look for to grade "favorite" and what he finds special in different areas and to mention more places he would like to go: He asks a lot of questions that are interesting ways of making those decisions.
To determine what has been my favorite place is a bit like asking which is your favorite child.
The most interesting place in terms of history would consider variables such as historical period (in our life time vs Roman times vs Persian or Egyptian times, vs paleolithic ages); and places in terms of familiarity; whether it is a place to where events occurred that I know something about versus places where I can learn things that I didn't really know about before or only knew vaguely (Tashkent/Samarkan, Persepolis, Axum, Cambodia killing fields, Petra, Masada etc.).
Or you can look at different cultures and how well you got to know them, their way of life, their food, their art and music and architecture, their history. (life in Ethiopia/Eritrea, Central Asia, Native Americans of the SW vs. those of NW, Canada and Alaska, Israeli Sabras and Palestinians, Turks, and all sorts of Europeans etc.).
Or you can consider Natural wild life and land forms; (Galapagos, Amazon Jungle, Southwest US, Kenyan safari, Yellowstone. Dolomites, Sahara etc.). Or to remember being struck by the spirituality that permeates some places :(Nimrut Dagi, Angor Wat, Machu Pichu, the Vatican, the Blue Mosque, Buchenwald etc.) where you can just stand or sit, deeply moved, open-mouthed and hair rising on the back of the neck. And more.
No, I can't give you a favorite place, but I'm going to keep looking as long as I can. It is a fascinating world we live in. As far as bucket list is concerned, I'd like to visit Tunisia (Carthage, Morocco, Spain and Portugal with a French friend whom I met in Turkey. The previous attempt was interrupted by the Arab Spring). I live in Northern California, a beautiful place in its own right.
Thank you for your submissions. Edits are used for length, clarity and to keep comments on subject of the month.
Staff of Speaking Out
Maggie Scott - 2012
I do the same thing every year but it's always a little different and always a great time.
In fact, it was just last weekend that I got together with 'old' friends. By 'old' I mean we have been friends since elementary - high school. There are 15 of us that have been getting together since we graduated... let's just say a few years ago. We change venues and times of the year but we have managed to have our 'Annual Potluck' every year.
My 'best' girlfriend, since kindergarten, also my maid-of-honour, hosted it this year. She put a bit of a twist on it and we had a car rally. It was so much fun!! We had 3 carloads of 4 and 2 stayed back as they were the planners. We had to go to our 'old haunts' (neighbourhood) and take pictures of our old houses and send them via text to the control centre. We also had to do things like:
walk a stranger's dog,
help someone put groceries in their car,
take a picture at a baseball diamond (extra points if you had a bat),
find a personalized license plate,
take a picture with the new owners of the houses we used to live in (extra points),
or have a drink with them (more points). Etc etc.
Fun, fun, fun!! We were a bunch of 'old' ladies running around taking pictures in the dark. It put a new fun twist on our annual fun get-together and we have some great pictures as proof of our good time.
We have one friend who now lives in California (we live in Manitoba, Canada) that joined us via FaceTime and we passed her around on the IPad for 2 hours! She even had drinks with us from her end.
I just love these ladies and wouldn't miss our Annual Potluck for the world. We plan to all go to Vegas in 2015 (we turn the big 5-0). We also planned to be on Oprah when we turned 40 but that didn't happen! Haha.
This was my first Potluck after my Laryngectomy and these great gals treated me like they always do. Love them for that.
Mediterranean Cruise, Part I
by Jack Henslee
Back in April, 2013 I was diagnosed with stage 3 lung cancer after surviving 3 occurrences of throat cancer over a 34 year period. This episode was inoperable, incurable, but treatable. That basically means that with some aggressive chemo and radiation (which I had already had back in 95) I might survive the average rate of 13 months, equal the 14% 2 yr. survival and possibly beat the 2% 5 yr. survival rate. The treatments almost killed me so they had to stop them with 1 chemo regimen left and 12 radiation treatments left. In total I spent 44 days in hospitals and a long time recovering to some degree.
In late September I decided to resume the treatments (with modified chemo) but insisted on a PET scan to insure that it hadn’t spread before I once again compromised my quality of life. I was told that at best the cancer was still there because I’d stopped the treatments too soon and it may be too late to restart them, But to everyone’s surprise the scan showed that I was cancer free with no sign of the previous tumors.
Jeanette, my love, had promised me a trip anywhere I wanted to go after I finished the treatments so I immediately booked a Mediterranean cruise before someone said it was all a mistake. She retired on Oct 18 and we flew to Venice the next day even though I still needed a cane to get around and wasn’t very strong.
We had been to Rome and Florence (my favorite city anywhere) the year before and vowed to return since 8 days wasn’t enough to see just one city let alone both of them. Jeanette fell in love with cruising when we did the WW Panama Canal cruise back in Jan, and I wasn’t getting around too well so I began looking for a good cruise. I was able to find a late season 9 day balcony room cruise for less than $1,500 each (unfortunately airfare was almost the same price) from Venice to Barcelona. We had a great price and a chance to revisit Rome and Florence if we wanted to although there wouldn’t be enough time to see or do a whole lot…. I booked it and the adventure began.
Our flight was from San Francisco-Seattle-Amsterdam-Venice, and because of the late start in planning, fights were hard to find and prices fluctuated almost daily. A hint for future travelers; Late Tuesdays or early Wed mornings are usually when you get the best prices which are generally based on volume, and that is largely driven by business travelers that for some reason don’t book on those days. Saturdays may also be worth checking out.
So we flew out to Seattle where we had a long departure delay because a lady had booked her dog to fly with her but after she had checked in the airline discovered that this particular plane could not fly with live animals in the hold. As a result we had to wait for them to unload the baggage and take hers off the plane. This long delay naturally resulted in us missing our connection in Amsterdam and after a 4 hr. layover we were finally re-routed to Rome and then to Venice. A 31 hour day, in all.
This particular cruise was billed (as are numerous others) as 2 days and1night in Venice before you sail. On closer examination I realized that wasn’t enough time to do much because we had to check in on the ship only between the hrs. of 12-4 PM on Mon, and then the ship sailed at 1 PM the next day. We had planned on arriving a day early on Sun afternoon and spend the first night in a hotel. The plan almost succeeded except we arrived at midnight on Sun totally exhausted and only had a few hrs. Mon morning to see some of Venice. Tues morning was also an option to explore Venice but we opted to rest and stay on the ship.
If any of you do plan to go to Venice I strongly recommend the Santa Chiara Hotel. It’s old and small but clean and an almost perfect location. There is no motorized traffic in Venice and this hotel is the closest you can get to the pedestrian bridge into Venice (about 100 yds.) If you book a hotel in Venice you will probably have to walk and drag your luggage over numerous bridges with many, many steps or take a very expensive water taxi to your hotel. You can also take a much cheaper water bus that has fixed stops but you still have to carry your luggage.. just not as far.
All in all what little we saw we loved and we are penciled in for return someday.
Part II willl be continued in the Whispers on the Web, Jan 1, 2014 issue.
As I answered this month’s Speaking Out question about favorite places this came to mind. Looking through some old photos, of happier days steering my 30 foot Seamaster, with my young family aboard, brought to mind a fearful storm and trying to make port, and the worries that I had. As I struggled with getting through those high seas, I thought of my foolishness in placing my loved ones in danger, through my love of the sea, although they never lost confidence in dad to get them through. Obviously we made it fine and enjoyed many wonderful other times though few of them were as dramatic as this one which I had to turn into a poem expressing my fears about the awful possibilities.
THE CRYING OF THE GULLS
The bowsprit sank into the angry waves,
pointing like a finger into Neptune’s deep,
that awful place where mermaids weep,
and the resting place of mariners’ graves.
In chapels of green shrouded caves,
where brave young men forever sleep,
surrounded by those, that silent creep,
so far beneath those tossing waves.
Is that the wind I heard, like a cry just spent,
or the cry of dead sailors, their souls in torment,
or the crying of gulls high in the sky?
Holiday Shopping and Your Privacy
It’s that time of the year again when we are planning for family visits and time with friends we don’t see as a routine basis. A big part of that planning for many is exchanging gifts and, of cours,e that means planning the gift list and shopping for the best price and best selection. Many of us have decided to avoid the crowds and parking issues in favor of a computer monitor and background music.
Whether you shop Walmart, Amazon, Best Buy or one of the thousands of other online merchants you will be confronted with one very real issue...Security of your information! With that in mind planning in advance for a safe and enjoyable cyber-shopping experience will help to ensure your information’s integrity. Bob Rankin has once again come to the rescue with a well thought out and easy to adapt plan of action for online shopping...
Along with Bob’s thoughts Avast Software (a highly recommended anti-virus provider) has also come out with their own thoughts for us to consider ...(Keep in mind that Avast anti-virus is a free program for the home user. Although Avast also has a paid version it is not really needed by the average home user.)
One thing I do is to be sure to use PayPal whenever it is accepted by the merchant. I will not use my bank debit card for any online shopping since I never want to expose my bank account to any online risk. I also use a credit card that has a low credit amount for sites that do not take PayPal. By using a credit card with a low credit limit I am keeping my potential risk at a minimum.
Do you use a DNS?
Domain Name System (DNS) “is a hierarchical distributed naming system for computers, services, or any resource connected to the Internet or a private network. It associates various information with domain names assigned to each of the participating entities. A Domain Name Service resolves queries for these names into IP addresses for the purpose of locating computer services and devices worldwide. By providing a worldwide, distributed keyword-based redirection service, the Domain Name System is an essential component of the functionality of the Internet.”
That's a lot of geeky words that means there is a service that finds you the safest and most common links to the questions you ask and sites you visit. A good DNS service protects you and your family from phishing malware and increases the performance speed of your internet service. Your internet provider normally has a DNS for your protection, however there are other providers that, in general, offer more at little or no extra cost. Providers include GoogleDNS, NortonDNS, and OpenDNS to name a few. OpenDNS charges $9.95 annually while Norton and Google are no cost. You can find more specifics at their websites.
Do you find yourself wanting to have a cup of coffee with a favorite friend? Be sure to check into the Webwhispers Forum during the week and join the rest of us in sharing information in a coffee in the morning sort of way. All sorts of “hot” news and tips that make our lives richer and just plain fun. You'll find everything from Lary issues, life lessons, Marlene's greatest tips ever, and just plain fun. If you're not using this great little bit of high tech you are missing one of the best things in our Lary life. Hope to see you there.
Frank in NJ
*References for VoicePoints
Bennett, S. & Weinberg, B. (1973). Acceptability rating of normal, esophageal, and artificial larynx speech. Journal of Speech and Hearing Research, 16, 608-615.
Blood, G. W., Luther, A. R. & Stemple, J.C. (1992). Coping and adjustment in alaryngeal speakers. American Journal of Speech-Language Pathology, 1. 63-69
Carpenter, M. A. (1999). Treatment decision in alaryngeal speech. In S. J. Salmon (Ed.), Alaryngeal speech rehabilitation (2nd ed., pp. 55-77). Austin, TX: PRO-ED.
Diedrich, W. M., & Youngstrom, K. A. (1966). Alaryngeal speech. Springfield, IL: Thomas.
Doyle, P. C. (1994). Foundations of voice and speech rehabilitation following laryngeal cancer. San Diego: Singular Publishing.
Doyle, P. C. & Eadie, T. L. (2005). The perceptual nature of alaryngeal voice and speech. In P.C. Doyle & R. L. Keith (Eds.), Contemporary considerations in the treatment and rehabilitation of head and neck cancer (pp. 113-140). Austin, TX: PRO- ED.
Duffy, J. R. (1995). Motor Speech Disorders: Substrates, differential diagnosis, and management. St. Louis, M): Mosby.
Dugay, M. J. (1999). Esophageal speech training: The initial phase. In S.J. Salmon (Ed.), Alaryngeal speech rehabilitation for clinicians by clinicians (2nd ed., pp. 165-201). Austin, TX: PRO-ED.
Gardner, W. N. (1971). Laryngectomy speech and rehabilitation. Springfield, IL.: Thomas.
Gilmore, S. I. (1999). Failure in acquiring esophageal speech. In S.J. Salmon (Ed.), Alaryngeal speech rehabilitation for clinicians by clinicians (2nd ed., pp. 221-268). Austin, TX: PRO-ED.
Graham, M. S. (2005) Taking it to the limits: Achieving proficient esophageal speech. In P.C. Doyle & R.L. Keith (Eds.), Contemporary considerations in the treatment and rehabilitation of head and neck cancer (pp. 379-430). Austin, TX: PRO-ED.
Haroldson, S. K. (1999). Toward achieving esophageal communication. In S.J. Salmon (Ed.), Alaryngeal speech rehabilitation for clinicians by clinicians (2nd ed., pp. 203-219). Austin, TX: PRO-ED.
Meyers, C. (2005). Group treatment models for head and neck cancer. In P.C. Doyle & R.L. Keith 9Eds.), contemporary considerations in the treatment and rehabilitation of head and neck cancer (pp. 639-663). Austin, TX: PRO-ED.
Salmon, S. J. (1994). Methods of air intake and associated problems. In R.L. Keith and F.L. Darley (Eds.), Laryngectomee rehabilitation (3rd ed., pp. 219-234). Austin, TX: PRO-ED.
Shanks, J. C. (1994). Developing esophageal communication, In R.L. Keith and F.L. Darley (Eds.), Laryngectomee rehabilitation (3rd ed., pp. 205-217). Austin, TX: PRO-ED.
Stone, R.E. & Hamilton, R. (1986). Laryngectomee rehabilitation in a group setting. Seminars in Speech and Language, 7, 53-65.
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 email@example.com
Managing Editor - Pat Wertz Sanders
Editor - Donna McGary
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.
© 2013 WebWhispers
Reprinting/Copying Instructions can be found on our WotW/Journal Index.