From the information we were given, there were about 250/260 in attendance at the IAL, counting everyone, larys, caregivers, vendors, VI staff and enrollees, plus faculty, IAL officers, etc. Most of these people are WebWhisper members, excepting a large number of students in attendance on scholarship. At our WW Dinner on Thursday, we had about 115 (a number of our SLPs had a conflicting meeting and had to cancel our dinner.) The awards that were given out were beautifully crafted certificates by our webmaster, Leonard Librizzi, and each of our awardees was allowed to select a WW Cap in whatever color they wished. These awards are all listed in our program, a copy of which is on the website under "About Us, Awards" at http://webwhispers.org/about/Certificates.asp We already had posted on the website, the 9 people who were awarded a scholarship this year and the 8 meeting delegates from WebWhispers.
InHealth's Dutch Helms Travel Grant was awarded by their representative, Richard Crum, $250 each to 4 laryngectomees. We are most appreciative of their generosity, as I am sure the four recipients were with their surprise.
Betty Labigang - Quapaw, OK
Angeline Leu-Smith - Lincoln, NE
Ron Mattoon - Des Moines, WA
Steve Israel - Hampton, FL
We want to particularly thank Richard Najarian of Bruce Medical for the lovely reception for the dinner attendees. We enjoyed the wine and company.
We are also grateful to Jim Lauder of Lauder Enterprises, who made a presentation for the scholarships from the Scholarship Fund on WebWhispers, dedicated to Lillian and Edmund Lauder.
I talked to the group about the fifteen years that had elapsed since Dutch was working on his new website and had the notion of adding a page for larynx cancer. Much of what I described came from Dutch's own words and gives our basis for our rules today. Several asked me about that later since I read from Dutch's writings, four suggestions for you. You will find the article that Dutch wrote for Headlines copied into the Founder's section under About Us. http://webwhispers.org/about/founder.asp
Next year will be in Durham, NC the first week in June and we will have more information posted on that later.
We are delighted to introduce Jodi Knott, who is the Clinical Coordinator of the Section of Speech Pathology and Audiology at The MD Anderson Cancer Center in Houston, Texas.
Jodi received her graduate degree from Eastern Illinois University in 1993 and has worked as a speech pathologist for 17 years, the past 10 years at The MD Anderson Cancer Center.
Jodi has extensive experience evaluating and treating patients with head and neck cancer, specifically those who will or have undergone laryngectomy. She is particularly known for her management of laryngectomized patients who have undergone complex reconstructions and require specialized and novel treatment approaches.
She is considered an expert in the field of alaryngeal voice restoration. She has been an invited faculty member at the International Association of Laryngectomees for many years, as well as an invited speaker at many of the local and state laryngectomy meetings. She is a research participant on several investigative protocols whose primary goals include the functional rehabilitation of patients with head and neck cancer.
In addition, to our benefit, Jodi Knott has been a long term member of WebWhispers since, at least, the year 2000, so she knows us well. She was active back then in our professional list WWHealthHelp and I still have copies of some of her advice messages.
Welcome, Jodi, and let us know what we can do to help.
Pat Sanders, President
Sunday, May 22nd
2221 Kentucky Avenue,
Looking out the front door, the sky was pitch black. I headed back to the kitchen when the neighbor, who was mowing my yard, came running in the back door yelling "Get in the tub. The freight train is coming." With those words, he saved my life.
I had just enough time to grab one of my persian cats, looked frantically around for the other one, then I ran and kneeled over baby Furball in the bath tub. I just prayed. I prayed for Juliette, the one I couldn't find. I prayed for our lives. It seemed like a long, long time.
I heard everything break, smash, crash, my head felt like it would explode, my ears popped and the pressure was horrendous, then the roof blew off, the rain, hail, insulation, shampoo bottles, the tile and plaster all fell on my head and back. I waited and I prayed, hugging baby Furball and I remember kissing her little head. Then it was over.
I finally got up and out of the tub, made my way to the back utility room grabbed some coats and stuff off hangers covered up baby Furball and the hamper was sitting there so I put her in it, then crawled to where my bedroom used to be. Everything was caved in and I was so scared it would all fall on me so I was so careful as I inched my way along, I was afraid to breathe. I remembered my purse had been sitting just inside the door but the first thing I saw was my grandmother's porcelain doll just laying there in the rubble, not a crack, anywhere. I found my purse sitting right where I'd left it, full of water. I grabbed it, dumped the water, crawled back to the hamper, got Baby Furball out, put my purse and grandmas doll in it. I kept Baby Furball covered up and stood by where my back door used to be, when the guys from the church across the street spotted me and came up to ask if I wanted to go to the church basement. I nodded yes, I have no voice since my last surgery in December. They carried me to the church through the rubble and got me into the basement with Baby Furball just clinging to me.
The church started crumbling in, so they came and got us out of there in a hurry. The preacher's son loaded us all up in his big 4x4 truck, 8 of us, trying to take us to a shelter and there weren't any unless you were hurt. One man in the truck was totally naked as he had walked out of his shower, someone threw a blanket around him, he couldn't even speak. A little lady sitting next to me said she was 96 years old and wanted to know if it was too late for her to start over. I just hugged her. Most everyone was covered in dirt, insulation, and muck, soaked to the core and in shock. We drove and drove trying to get out of there, headed to another town for one lady, and I finally remembered my friends in Webb City which wasn't far so he brought me up to their house. They took me right in. I was in total shock and sat up all night crying.
My son from Wichita had already called them and they told him they thought the tornado had jumped over me and hit east of me, of course they were all trying to call me and my phone was in never land...
I look back now and it is almost unbelievable to me that I've lived through all of this, I know we are not supposed to question God but I can't help but wonder why my life was spared once again.
I've already cried a million tears, mainly for my Juliette who has never been found. The silence after the storm was the most deafening thing I ever heard; it was stone cold silent. Until I saw those guys from the church and my next door neighbors climb out, I thought I was dead and it just hadn't set in yet...the sights I saw were horrible. I stayed in a trance for days.
I had one big anger fit that lasted for 3 solid hours I picked up everything I could get my hands on and smashed it to smithereens; it all started over a plaque that hung over my front door that said, "God bless this house" I have no voice but I screamed and cursed and yelled my lungs out at everything I picked up and smashed...with no sound. After it was over I ached from head to toe but I'd give back every single thing to have my Juliette back.
My son came from Wichita to help me, it was his ability to take the bull by the horns and guide me along, we took care of the bank, the Post Office, the insurance, the salvage place that bought my totaled cars then, we were guided to the most wonderful realtor in the world. He also lost everything in the tornado and was working out of a portable office in a rented car and this man performed miracles in a matter of just a few days.
My new home is one of the first I looked at, as soon as I walked up on the front porch I was reminded of great granddad, his home was everybody's home, the family gathered there. Big front porch with a swing, then as soon as Don Thorn opened the front door so we could come in, I saw glassy hardwood floors and woodwork, then my eyes rested on the french doors that lead to the dining room and I said, "this is it!"
We close on this house the 29th but I am already there. I'm so very fortunate, most everyone else is still in shelters, Fema housing, or tent city.
I can't help but wonder if more anger is to come, I know the tears are still there cause I cry as I write this. I'm so worried that I'll forget to thank someone that has donated or given me something. I want to remember everyone and everything because I am so thankful for all who helped. My friends here in Webb City have gone all out for us and I will be forever grateful to them. Webwhispers has also helped me and I hold them dear to my heart forever.
What is Your Proudest or Greatest Achievement Since Your Laryngectomy?
Terry Duga - 1995
My proudest moment or, maybe, best accomplishment was helping Dutch with the founding of WebWhispers. Not that I did the inception or day-to-day stuff, that was Dutch. I did, however, draft and file the incorporation papers and led the charge on getting the exempt status for the group. WebWhispers, and my small part in its founding and direction, is my proudest accomplishment since becoming a lary.
Len Hynds - 2004
Having left school at the age of 12 because of the intense bombing on London, and all near schools destroyed, and having three homes blown-up, being buried beneath one for many hours trapped before being dug out, my education was very poor. I taught myself through life, and after a very chequered career at the age of 64 I had open heart surgery, when valves were exchanged for metallic ones and a by pass done, and a pacemaker fitted. I still ran my business, but ten years later, at the age of 74, I had cancer of the throat and lost my voice. A TEP could not be fitted
immediately, so writing was my only communication.
I was accepted at a college on a creative writing course, and all were marvellous with this silent, aged, student. I was advised to go on to university as they said I had a gift for poetry and short story writing., and at the same time I started making strange sounds with the new TEP. So I enlisted at The University of Kent at Canterbury, and at the age of 77 I graduated in Creative Writing, Writing For Stage And Screen, and Poetry. The Graduation ceremony was held in the famous cathedral, and this silver haired old gent lined up with all those young people, to go before the Chancellor in his magnificent gown and hat of green and gold, in front of that immense congregation.
As I approached when my name called, I could hear a hushed silence and could see all the colourful gowned professors and dons looking at me slightly astonished. The Chancellor smiled holding his hand out, and seeing my Buchanan bib beneath the finery, asked if I had a sore throat. I explained that I had no vocal cords through throat cancer, and that I was now a Laryngectomee, speaking with an artificial aid, little realizing that my words were being broadcast throughout the cathedral by his microphone. The clapping was immense and long lasting, and the chancellor embraced me. The clapping I felt was not for me, but for every throat cancer victim. I felt that it was for all of you, I was just your representative. My proudest moment.
Marilyn Schlossberg - 2009
I am a very independent person and feared losing that independence. As I approach 88 years, I maintain my life style, go and come as I wish and enjoy every minute. That is my greatest achievement since becoming a lary.
Carla Lynch - 2001
My proudest achievement(s) since my laryngectomy are two things on opposite ends of the spectrum.
First, I was instrumental in creating the American Cancer Society Heroes of Hope Program, serving as the Chairperson of the workgroup that developed this initiative. Heroes of Hope is a survivorship initiative started in the Texas Division of the ACS, but has grown to the International level! The Heroes of Hope and their Profiles of Courage provide a highly visible symbol of personal victory over cancer and encourage support and participation in the programs of the American Cancer Society.
Secondly, I work at a local Harley-Davidson dealership as the accountant. Growing up around motorcycles, I was always a passenger. After going to work at the Dealership, I decided I wanted to be the driver. I enrolled in the Motorcycle Safety Course, got the “M” designation on my driver license and purchased a Harley!
Mohan Raj - 2010
I am 76, living in Bangalore, India. I had prostrate surgery 3 years ago. I felt younger by 20 years and forgot all about the prostate problems once and for all. Two years back. I had quadruple heart bypass surgery. Felt 10 years younger and forgot all about heart problems. Three months after by-pass surgery I climbed to the top of the Great Wall of China. Life was better after each of these surgeries.
I wish I could say the same after the Total Laryngectomy done an year and a half ago. Every day some new problem. Stoma shrinking, bleeding, Mucous, prosthesis leaking, aspiration and so on - so many problems, never ending. So many visits to doctors, never ending. I have become prone to a high order of maintenance, just to lead a normal life. Life has never been the same as before.
Frankly, every time I overcame one problem I thought that was the proudest moment and greatest achievement. Not really so. Soon, some other problem will crop up.
Having said that, if I am asked to recount a proud moment I will call it the moment I could speak. [ Most Larys may be saying the same.] More so when I had no SLP or speech therapist to teach me or guide me. I never went to any of them till date.
I did it all on my own and I have reason to be proud. I blew air through Provox 2 closing my stoma and I could feel the vibration. Instinctively words came out the moment the vibrations were manipulated by lips and tongue. No big deal at all, I felt and I am still wondering as to why any Lary would need to go to a SLP or speech therapist to learn to speak! We can all do it ourselves and feel justifiably proud.
Ginny Huffman - 2005
I never really knew anyone who had throat cancer. Many years ago, in my hometown, Erie, PA, my grandfather took me to Eckerd's drug store. Mr. Eckerd stopped to greet my grandfather and spoke in a booming voice using a very large square box to project voice. I was elementary school age and very impressed with this clumsy device. Much later, I remember the "Marlborough Man" ad urging folks to stop smoking. The model for those ads was dying with laryngeal cancer. I found it chilling but continued smoking, believing as most young people do, that it wouldn't happen to me.
Following my surgery, I was visited in the hospital by a lary who was speaking with a TEP. I was so encouraged as I couldn't make a sound. It would be over a year before I had my TEP and realized that I still knew no one with throat cancer and our community needed a support group.
In the fall of 2008, we began meeting at Mayo in Jacksonville,FL to share our journey and respond to the area Doctors and SLPS whenever they request hospital visits.
Our group has been one of the most satisfying endeavors I have undertaken. Many members come to Mayo for their laryngectomies and return home to other states and countries so we communicate through emails. I had wonderful support from the Daytona, Fl group and our meetings have offered me unique insights into Lary World. I continue to meet truly brave and interesting folks I might never have known without our shared concerns. The Doctors and Staff attend when possible and we are now rotating our meetings with Shands Hospital, thanks to the efforts of several members. I have such a sense of pride in our group and how helpful we are to each other.
Our group often reminds me of the adage, " There are only two prerequisites for living: courage and a sense of humor."
Bob Kanjian - 2002
After my surgery, I was told that I would not be able to referee soccer games again since I would not be able to blow the whistle with my mouth. You see I had been officiating soccer since 1978. The games included professional leagues, college and high school games. In April, 2003, I returned to officiating games again. I worked my way back up to college level.
My surgeon at John Hopkins asked me to bring my whistle to his office to demonstrate how I could blow my whistle. A few days later, I arrived and he had his fellow doctors there. I whistled as loud as he wanted me to. He took photos and was very happy for me.
We are all different and when someone says you can't do some thing it is not always the case. Be positive!
Harry Wintemberg - 1982
Following my surgery, I went through a series of progressions that enabled me to feel like I was becoming a "normal" member of society by virtue of my esophageal voice development. A well-intended friend suggested the ultimate hurdle on my road to normalcy would be to join the Toastmasters Club. Needless to say, my first session was filled with fear of failure, but I was pleasantly surprised how I was treated like a "normal" speaking individual. The subject matter and delivery were regarded as being much more important than the quality of my voice.
This experience, after several months, gave me the self-assurance and confidence to return to my position as Production Manager of a large manufacturing company and has allowed me to live a life essentially the same as in my pre-op days.
I can not properly praise the Toastmasters Club for what they did for me in reaching my greatest achievement......acting like and being accepted as a "normal" member of society.
James E Sparks - 2006
My Doctors told me I might as well sell my Harley . . cause my riding days were over.
Then they modified it to: "You won't be able to ride without a windshield." Which I hate as bad as helmets . . and they SWORE I would not ever be able to ride in the rain or cold.
Well . . I'll be 5-years post-op come this October. I took my first ride apporoximately 9-months after surgery. I did put a windshield on her because of my Ol' Lady's harping, but it came off within weeks and I've been riding without one ever since. Oh, yeah . . I've ridden HUNDREDS of miles in the rain AND cold without nary a problem! And my beloved 19-year-old Harley remains my main means of transportation to this day! Just got to love us die-hard scooter tramps, eh? (I be closing in on 60!)
Just goes to show you . . doctors don't always be right!
Tom Olsavicky - 2008
After my surgery, like most of us, I didn't know what the rest of my life would be like. I was an electronics technician for most of my life which didn't require a whole lot of conversation. However, about a year after my surgery and after mastering my new EL voice, my SLP suggested that I would be a perfect person to start a lost chord club. I had my doubts but with her support and encouragement, I decided our area could use a place to gather and share what we had been through.
The nearest club was 40 miles away and I was not seeing many of the 50 plus larys in my immediate area attending. I remembered how much that club had helped me prior to surgery so I had a feeling that I should give it a try. So I sent out letters to patients and professionals to ask them to help me establish a club where we could help those who would be following in our footsteps. It was rather disappointing in the first couple of meetings when I only had one other Laryngectomee show up. However, once the word got out and I chose an evening time slot, the numbers began to improve. I now have 8 faithful Larys who come to most meetings, 2 SLPs and a Surgeon who also attend. Several caregivers and family members are able to get and give much needed information. I do hospital visits to all the new larys and get a wonderful feeling, inside, when I can give them the support, confidence, and information necessary to get them through this life changing experience.
I never thought I could talk so much, have such an impact on other peoples lives, and truly feel that I am doing what I have to do. I am a retired 68 year old that realizes that I now have a purpose in life. I owe it all to an SLP that believed in me. Thanks Ann.
Tom Olsavicky, President of the Peninsula Lost Chord Club, Newport News, Va.
Steve Staton - 2007
I had a very difficult time adjusting to the fact that I could no longer speak in the manner that I had become accustomed. Hated life and actually considered ending it all. I threw it out on WW that I was tired. I received several letters from WW members telling me different means of achieving rest. Most simply didn't understand the meaning... tired of life.
I received an e-mail from Tom, the singing cowboy (sometimes cancer doesn't kill you), who told me that being tired isn't the answer, and to work my way thru it.
At around 11:00 P.M. I had the munchies and decided to go out for some drive thru. I ordered my food using the speaker system on the drive through, and, lo and behold, they understood me, first attempt. A revelation. Wow! Someone other than my wife (who is totally the most wonderful person on our planet today), heard me. This is the moment that I realized that all was not lost. Someone that had zero idea who I was, actually Understood me.
I felt blessed. A simple means of communication can mean a world of difference. This event took me to where I am today. Saved by someone making minimum wage. Life is good.
Never give up, right around the corner , the answer to your problem could be waiting.
Paul Bradbury - 2008
Able to talk. Going back to work full time and having the same friends and family treating me like I am the same person as before. Splitting wood, mowing the lawn, painting my house, having pizza and beer on Fridays. Breathing air. (Life is good)
Mike Smith - 2008
I was a Public Information Officer with the Justice Department, retired in 2005 at 51, and after surgeries in 2005, 2006, and 2007 removing nodules from my vocal cords, I was diagnosed with cancer in January 2008. After radiation treatment failed, I had laryngectomy surgery on September 11, 2008.
After spending my entire worklife in positions which verbal communication was primary, being satisfied losing my voice was unacceptable. I had a TEP, and began speaking with a voice prosthesis 15 days after my surgery. The first year after my surgery was difficult, as failures with the voice prosthesis were often, and becoming expensive, but speaking wasn't just an option, it was a requirement for me...I had to talk and be understood. People around me were saying I sounded good and very understandable, but what I was hearing myself I didn't like and thought most were just trying to be nice to me with their comments.
In January 2010, we had a surprise 90th birthday party for my wife's mom, in which guests came from 5 states and filled a conference room at a local hotel for the two hour event. Where I had previously MC'ed an untold number of public events as a PIO, I had not attempted anything of that nature since my surgery. It was one of those moments....standing in front of sixty people at the front of a fairly large room, and without a microphone, I coordinated the entire program from start to finish....and everyone understood me! It was a coming out party so to speak for me, as it was that day, that event, in which I found out I could really communicate again...
That same month, with a renewed confidence, I accepted the President's job in our local club, which I still currently hold. Obviously that day in January 2010 was a monumental day for me...
Anne Reed - 1989
I was fortunate to be young, forty-five, when I became a laryngectomee. This gave me the strength to get on with my life. I used a Servox for the first five years and did not let it deter me from going out to shop, work, and play. I was able to resume my job as a loan specialist at Security Pacific Bank until they merged with Bank of America. At that time, I was displaced from my job due to the merger.
I started courses at a Community College and worked with a transitional job placement firm. They helped me develop a great resume and offered coaching in job seeking as well as posting job opportunities at the new Bank of America. I applied for a job I saw listed and was hired for a new position with the Bank. I managed to accomplish this within six months of being displaced so I was able to keep my 'twelve years with the bank' tenure.
I'm proud that I was able to get re-hired and continued working till I retired, another thirteen years. In addition, I weathered another merger. From the beginning I was actively involved with a Laryngectomee Club and still am to this day. I have been fortunate to have their support and have been able to give back, as well.
Lou Trammell - 2009
I'm thinking a lot of people would say their first words but I knew I would speak again, so that wasn't an issue. Now I had a new life to live along with a new way to talk.
My greatest moment was the first meeting of the group I started at a major cancer treatment hospital here in Chicago. I remember saying to myself, when I first stepped into the meeting room that day, "This was worth the 9 months work I put into it."
It wasn't a very good day because we had only one potential member show up along with an Atos Rep., a social worker who tried to help open at another hospital, and a clinical educator from this hospital's speech school. So the total for the day was 7; the outcome, priceless!!
That was 4 months ago and it's still priceless.
Angelique "Angie" Erickson -
I was always a fitness buff, speed walking and bicycle riding long distances were some of my ways of staying fit and keeping my endurance up. Even when the tumor on my larynx was causing me to be short breathed, I still managed to do both to some extent.(much to my ENT's great surprise, as I was living on 82% oxygen.) After surgery and radiation, I was so weak, had lost all my endurance and tired easily. Having a young dog, I was forced to get out, break the isolation, and quit feeling sorry for myself. Slowly, I started gaining back my endurance and my social skills. Made myself get back on my bicycle and if even for a short mile or so ride,feel the wind in my face, have to concentrate on the road, not think about cancer, or the mass of scars that are mine now.
One day I just decided to own my scars, wear my stoma like it is nothing, not let folks staring bother me in the least. I survived cancer, their stares mean nothing after coming through that ordeal. I continued training myself, walking longer and longer daily, in fact, have gotten to where I can speed walk again.(Much to my pup's pleasure.) Made myself ride my bike the five miles to the grocery store if I needed a few items rather than ask for a ride since I don't own a car. Though hard and tiring, especially on long hills, I was once again experiencing the exhilaration of the wind in my face, and the smile I get from the simple joy of riding once more. Once through shopping, I would take the bus back, not trusting my endurance for the return ride.(I was thinking about those long hills too much and not about the reward of the long down hill run after the climb.)
So it came as a surprise when heading to church and finding the bus bike rack full, I decided to hump it the five or six miles instead of saying the heck with it and going back home. Though hot and sweaty when I arrived a half hour later ,I wasn't exhausted. A drink of water, a cool paper towel to help drop my core temp down and I was ready for service. When I left, though I could have caught the bus back over to the stop by my place and saving me a lot of energy ,I didn't even hesitate,I hopped on my bike and rode all the way back to my place without once stopping to take a break. Found I wasn't short of breath,didn't feel exhausted and, in fact, I felt good. Showed me the effect of wearing an HME on a long ride, also, since I didn't feel like my lungs were dried out like they do when I rode just a foam stoma covering. I am so pleased that I had a demonstration of just how much endurance I have regained simply by pushing myself harder than I thought I could allow myself. I didn't fear the "what if". It was do what I must do and I reaped the benefit of a new personal accomplishment. I showed myself that there is life, a good life, after cancer. I can regain what I thought had been lost for good.
Jesse Shockley - 2010
My greatest achievement, as a Lary, besides still being alive, was attending the IAL meeting. Being part of the group that went through the Voice Institute was very enlightening. I wish all SLPs and future SLPs would attend. The idea that I went in with was that there would be a group of Larys that would share and help develop better speech techniques. I was really surprised to see that we were probably outnumbered by students.
As the week started I wondered about all the clinical details that were being shown and discussed. By the end of the week I realized the part I was playing in the scheme of things. At various times I was put with different groups of students and was more that happy to share my experience and display my TEP and have them ask questions. This was a first for me—having someone voice the curiosity that I have been seeing in everyday people and them being too shy to ask. I think that being part of a teaching experience, that will undoubtedly help future Larys is really an accomplishment for me, so I guess that's what compelled me to write.
Thanks for being a part of my life.
Listen to the Children
Some of you may remember back when I wrote about concerns I had that my grand-daughter might have issues with speech development because I was her primary care provider while her parents worked. In retrospect, I can only say this: a new grandmother is only just a smidgeon less neurotic than a new mom when it comes to these things. I admit it now seems silly; but at the time, I worried. She was a little behind with her speech, but her doctor didn’t seem to think it was a problem and she certainly was talking … it just wasn’t in any language known to us!
I secretly harbored fears that it was all my fault. If she had a Nana with a normal voice, she would be talking better. After all, I couldn’t read or sing to her with a proper voice. Negotiating a storybook, a squirmy kid and a Servox is tricky and sometimes, I admit, I just gave up. I couldn’t do the funny voices. I couldn’t read the stories the way I wanted to.
Despite all that, children do love stories and we kept going to the library and picking out books to take home. Story hour in our library is as much about visiting as it is about listening. I am not sure who benefits more, the moms/grammas/caregivers or the kids. And it was there I had an epiphany. A group of us were sitting around the puzzle table when one of the little boys noticed my “voice”. It was, of course, instant fascination. As I tried to explain it in a way a two year old could understand, Kayleigh came over, took my Servox, put it to her neck, pushed the button and then showed the little boy the button. She said something in what we call K’language and then just laughed and said, “My nana.” The moms were very impressed and said I would be a hit at Show and Tell when she goes to school.
The other day I read her a book called “Don’t Get Wet, Jesse Bear”. We got it at the library and I had read it just once before to her. She insisted that she read it to me, this time, so she turned the pages and I read. I tried my best to do the different voices of Mama and Papa and Jesse Bear but it’s not so easy with a Servox. After she got up from her nap, she was playing in the living room and I saw her pick up the book and start to “read”. She said over and over again, “Don’t get wet, Jesse Bear”. I was amazed not just she remembered the story so well, but she was “reading” with the exact pitch, timing and expression that I had tried to use with pitiable results, I thought. Apparently not! Clearly she somehow understood!
She still needs a translator from time to time, but I am encouraged. Not only did she hear and understand the words, she recognized what I was trying to say in my own way. There are other interesting developments. I enunciate very clearly; one of the reasons for my success with a Servox. I have noticed that she seems to be able to read my lips. I was filling her water bottle on our way outside one time. I had my hands full, so I couldn’t use the Servox. I turned to her and said, “Kay, get the cap”. She stared at me for second and I repeated, “Get the cap”. She walked over to the drawer, got the cap and handed it to me, “ Here, Nana, I got the cap!” That could be a handy skill, later in life. Although at this age one needs to be very careful what you say and do around her. She is a sponge, picking up new words and phrases constantly. I swore, under my breath, so to speak, the other day and she looked at me puzzled and did an alarmingly accurate imitation. Generally when she picks up something new she will repeat it back as a question and we say it a couple more times as reinforcement. I pretended not to hear the question this time and vowed to watch my language In the future. As far as Kayleigh is concerned, I come in loud and clear.
You know when I first lost my vocal cords to throat cancer, oh about 11 years ago now, I woke up from surgery in my room and the first thing I remember was they gave me this electric larynx to talk with. I still got one but now I use it by putting one end to my neck and pushing this button that vibrates the unit (OK fellow gardeners, don’t be snickering). When I form my words like I used to with my mouth the vibrations from my electric larynx act as my vocal cords or something like that - what am I, a throat specialist? So anyways I had such scarring on my neck from my first surgery that I couldn’t use it on my neck ‘cause I didn’t have what they called a “sweet spot” on my neck to use. So I used a straw device that fit on the electric larynx like sipping a milkshake that Dot Grissom used to make for me at the old Dairy King. You put the plastic straw in your mouth and talked. Now some folks after the surgery I had have a hard time talking, if they can talk at all. It’s like anything else that’s new - sometimes it takes time.
NOT ME! My wife, Linda, handed me that thing and I put it in my mouth and ain’t shutup since! Just ask Linda! I might have told you folks this before, but my wife Linda has a wonderful sense of humor, which comes in handy on occasion being married to me. And she tells folks sometimes that when she gets tired of listening to me going on and on about the garden she just hides my batteries from me so I can’t talk. Can you believe that? Not the part about her telling folks, I mean the part about her hiding the batteries!
Well, what I wanted to really tell you folks is that when I was first told I was going to lose my vocal cords I was scared. Scared of not being able to talk, not being able to tell my wife I loved her, my mother, thanks for being such a good mother and well I was just plain scared I’d have no voice. But you see I was wrong.
In some weird crazy way I do have a voice and it’s not my electric thing-a--mah-jig that I use to make sounds with now. It’s writing these little stories. I know it’s crazy, but hey, I told you that to begin with.
But how do I know that my stories are in some strange wonderful way my voice now? I’ll tell you fellow gardeners, it’s you. You know me, fellow gardeners, I ain’t serious much but I’m serious as heartbeat now. Every time I hear from somebody on the comment section of the story pages on my blog that they smiled at reading that story or I get a message or note on facebook from somebody who enjoyed or related to one of my stories, I know I have a voice. Every time someone takes the time to read one of my little stories when they got plenty of other things to with their time, and I get an email from them telling me they laughed at the story they read or it brought back old memories for them, I have a voice. I love writing these little stories and I love making folks laugh or smile. And like I said, when I hear back from you folks I know I have a voice. I sincerely appreciate you sharing with me my crazy, whacky, goofy and sometimes meaningful little stories. Meaningful in the sense that something I wrote meant something to you, anything, hopefully something good.
I wanted to add one more thing though, the most important one. You see, fellow gardeners, I really have 3 voices. One is the electric larynx I use everyday, another is the stories I write almost everyday and my wife Linda, she is my voice too, forever!
Paul From Alabama
Perhaps There's a Greater Truth About Our Greatest Dread?
Not long ago I responded to a WebWhispers’ member's e-mail about his doctor saying, "The cancer has come back". I posted everything I could think of that might help or comfort him, but the limits of space and time kept me from discussing the rest of my story; a diagnosis that I believe everyone on this planet dreads and fears - sometimes beyond reason.
Fortunately, WW provides us with this place for longer essays on topics that are dear to us. So I've chosen to use it for the first time to argue my belief in a "greater truth" about the words, "You've got cancer", or "Your cancer has come back". It has helped me to thank the God I pray to for letting me discover this lousy disease in time to defeat it four times over the past twenty-odd years.
I first want to reproduce the reply I sent to that fellow because it quickly covers the nuts and bolts of my particular methods for dealing with a negative diagnosis and it sets the stage for this discussion of a greater truth that allows me to be the aggressor instead of a defender in fighting my deadliest enemy.
Date: Sat, 11 Jun 2011
" .... I imagine that most of us felt a little shudder as we read your post and you can bet that prayers are flying out from around the world this morning for one of our own who has come face-to-face with the words we all fear and dread everyday of our lives ... the cancer has come back.
I suspect that it's the only problem a lary could post for which we cannot say ‘Everybody's different’ because we ain't when it comes to burying that possibility under layers of busy stuff and seldom, if ever, discussing it as we work to hammer out a good life with a hole in our throats and hope in our hearts.
Then, wham! Your report peels back all our safeguards and we're forced to feel all our feelings because we've been there and we could be there again, so we search for anything we could say or do that might help you get through the days and weeks ahead.
In my case, I've heard those words three times in a trip from prostate, lung, vocal cord and larynx cancer over the years, and each time I followed pretty much the same pattern. (1) I got the doctors’ opinions, then went to a clinic for a second opinion (one time, it revealed a flawed diagnosis). (2) I chose the treatment option I preferred and committed to it. (3) I then got off by myself and examined the best and worst case outcomes I faced and determined what needed to be done to prepare for them. (4) Then, between treatments I got busy arranging my affairs for both of those possibilities until the verdict was in on the cancers.
Peripheral to those primary steps was an effort to talk about the disease, treatment and possible outcomes with anyone who was willing to listen. It has always seemed to help me deal with fears and concerns by talking about the worst of them in great detail. Most folks don't like to listen to that stuff, but I figured to hell with them. I'm scared and I want to talk myself out of it!
Finally, I spent days on the internet learning anything and everything I could about my enemies and it taught me that knowledge is indeed power when it comes to fighting a battle.
That's about it, my friend. May the God I pray to wrap his arms around you throughout the days ahead.
I'll always be thankful that WW provides a place for so many people to compare notes on so many problems and challenges that are unique to the lary community. Reading those comments has helped me in more ways than I can count, and I've tried to repay them by posting tips, tales and observations of my own anytime I think they might be useful.
But this time, my short recap of methods and procedures left too much unsaid, so without apology, here's the story about how I became an aggressor instead of a defender in my war against cancer.
About thirty years ago my dad died of prostate cancer and I will always believe that his death saved the lives of my brother and me because it was a direct result of his "old-school" refusal to go to a doctor. He was of that generation that had grown saddle leather tough from living through the Great Depression and fighting his way across the Pacific Theatres of WWII.
He considered the growing pains in his hips and legs to be just another test of his toughness, until he slipped, fell and broke his hip on the ice in Oklahoma City one day. He wound up being featured by a columnist of the Daily Oklahoman who interviewed him from a hospital bed because the doctor had been amazed to learn that Dad hadn't been to a doctor since he volunteered for the Navy the day after Pearl Harbor.
We were all thrilled when Dad's story appeared in our state’s biggest newspaper, but our pride was soon overwhelmed by the doctors revelation that those hip and leg pains stemmed from advanced prostate cancer that had spread into his bones and vital organs. You probably know the rest of that story. A couple years of extreme treatments and surgeries led to the day I got the call that the man who'd been at the center of my life for almost fifty years was gone. It was bitter news, because his experience had taught us so much about prostate cancer and the positive results of early detection. My brother and I knew, as we stood by his grave, that his passing was statistically a terrible mistake caused by his fear or pride about going to a doctor for check-ups, and we made a pact then and there to pursue those check-ups in our own lives.
We decided that if once a year was good, once every six months would be better, and exactly a year and a half after that resolution, i was diagnosed with prostate cancer and the biopsy revealed five of six spots were cancerous. Thirty-five radiation treatments later the problem was solved. They caught my brother Rick's about five years later, and he chose surgery to whip it.
A couple of years later my voice became raspy (a friend called it a cigarette and whiskey voice) and following the aggressive attitude my dad's death had instilled in me, check-ups led to hearing, "You've got cancer in your left vocal cord, Bob". A trip to Mayo's for laser surgery, followed by 35 radiation treatments brought me back to a normal cancer-free life because of early diagnosis.
Then it was lung cancer that was found when I experienced extreme shortness of breath a couple years later, and again, early diagnosis coupled with radiation and chemo put me back on the golf course within a year and a half of treatments.
Then, about four years ago extreme fatigue set in and led me to an ENT who diagnosed it as scar tissue from so much radiation and advised me nothing could be done but drink a lot of liquid. I went to another ENT for a second opinion and he confirmed the opinion of the first guy. In the meantime I had arrived at a point where I could barely walk without extreme effort and golf was out of the question. That's when one of my son-in-laws called me about a specialist he'd seen on Oprah who'd described his practice treating people with the same problems I had been experiencing. I e-mailed Dr. Zietels at Mass General. He called me back with an offer to take a look, which led to a diagnosis of massive larynx cancer that led me to Dr. Medina at OU Medical Center for a complete laryngectomy. That put me back on the golf course and back into my wonderful family's lives within weeks of the surgery ... and that's where I am today.
The greater truth about check-ups that lead to the words "You've got cancer" or "Your cancer has come back" is simply this. Thank God and medical science that we found it in time to do everything possible to fight it, or (as has been the case for almost three years now) those check ups lead to the thrill of getting a clean bill of health for another six months!
Pursue those check ups! Embrace them! Pay attention to what your body tells you and don't take anyone's opinion when they say nothing can be done! Anything less is like a general in combat who refuses to take advantage of the intelligence available to him about his enemies’ next plans, or the boxer who has tapes available on his next opponent but who's too lazy or too cocky to study those tapes for clues about the other guys soft spots.
Then, once you've accepted a diagnosis follow General George Patton's three secrets to success when it's time to put study and planning aside. Attack! Attack!! Attack!!! Until the battle is resolved.
Early diagnosis and treatment is our greatest and most effective weapon against every disease I can think of and I've written this to influence folks out there to accept that “greater truth” as a key to their survival.
I have been fascinated reading all the comments about having your original voice recorded before the operation, and the opinions have been wide and varied, from the lady who cried silently upon hearing it again, to the stalwart man who said, " That’s the past. It's best to wipe it out, completely forget it, and get on with life." As a poet I can feel for the lady, and at the same time admire the man. But even he in silent moments by himself must feel sad that he has lost something very special.
Whatever artificial voice we are lucky enough to acquire, and we learn to use, there is no doubt that in time there are strange resemblances to our old voice, and all of us know what part of the country a person is from with their local dialect shining through. I have met laryngectomees that I know come from Wales, Scotland or Ireland, those three countries having quite distinctive ways of pronouncing the basic English tongue. I know very little of the dialects in your vast continent of America, but there must be many.
When I lost my vocal cords in 2004, and eventually started speaking again with my TEP installed, I could put no emotion into my words. I found, as you all did, that you cannot laugh out loud, and crying would be done silently with tears filling your eyes. That's why writing became so important to me, to put my innermost thoughts and feelings across to people because my spoken word would not suffice.
But on saying that, during the last seven years, I have been called upon to give speeches, to large groups of professionals on occasion, where somebody videod it, and by carefully choosing my words, with a dead pan face, I had them all in stitches of laughter. So really, friends, we can overcome most things. But my stories and poems come from the heart, and have opened up a new world for me. If anybody is interested my web site is ... http://www.thespeechlesspoet.co.uk ....
or search... Len A.Hynds Speechless Poet....
Our Club, The Ashford Laryngectomee Club, is a very active one, and all the members will be coming to my wife’s birthday party, about 100 family and friends ,with three professional acts. Plus, I have a few things tucked up my sleeve as a surprise, one of which will be the Laryngectomee Choir. I think it originated in America, so I will pinch it, like we did all that tea years ago, at one of your little harbours called Boston. It is made up of a group of High School students dressed as monks pretending to sing a classical song, " Hallehlujah ", but instead of words coming out, they keep whipping up boards with the words on, for the audience to read. The audience was convulsed with laughter, and I hope the same thing happens at Tilly’s party.
Seriously though, the human voice is a wonderful thing, and I know I will always miss mine. Lauren Kincaid of Omaha wrote of 'Banking ' your voice for those special occasions, such as saying " I love you ", or for various emergencies. Well done Lauren, a brilliant idea. It is pointless being your poet, without sending you all one. A poem that fits every laryngectomee, no matter how they shake their head.
The mask we wear, that smiles and lies,
so hides the tears, that's in our eyes.
We practice hard, with inner guile,
with torn and bleeding heart we smile.
Why should we show them otherwise,
why should we let them hear our sighs.
Let them not think, or dare to ask,
that this our smile is just a mask.
The voice is gone, but we are here,
and gone is that once dreadful fear.
The mask will vanish, just like a pain,
and then once more we'll smile again.
Keep well everybody.........................................................................................Len.
Welcome To Our New Members:
I would like to extend a "Warm Welcome" to our most recently accepted laryngectomees, caregivers, vendors, and professionals who have joined our WebWhispers community within this past month. There is a great wealth of knowledge and information to be accessed and obtained from our website, email lists, and newsletters. If ever there should be questions, concerns or suggestions, please feel free to submit them to us from the "Contacts" page of our website.
We welcome the 36 new members who joined us during June 2011:
Jeani Adams - (Caregiver)
Ann Bayliss - (Caregiver)
Sara Byrd - (SLP)
Newport News, VA
St. Joseph, MI
Kitchener, Ontario, CAN
James Graveston - (Medical)
St. Peter's College, UK
Pattie Henry - (Caregiver)
Susan Humphlett - (SLP)
Myrtle Beach, SC
Round Rock, TX
Avondale Estates, GA
Kevin Madden - (Vendor)
Panorama City, CA
Michelle Mofield - (Caregiver)
Julie Oliver - (Caregiver)
Denise Popiel - (SLP)
New Bern, NC
Linda Steele - (Caregiver)
Elizabeth Temple - (Medical)
Palm Coast, FL
S. Boston, VA
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