September 2007

 


 

 

Name Of Column Author Title Article Type
News Views Pat Sanders Rosenkranz, Forum News & Events
VoicePoints Lisa Proper-Coordinator Near-Total Laryngectomy- Part I Education-Med
Special Barb Stratton Wonder Woman Humor
WW Columnist Colin Bolton Bali Experiences
Vicki's Midnight Train Vicki Eorio Stroke Part 1 Experiences
Between Friends Donna McGary Our Kind Experiences
Practically Speaking Elizabeth Finchem Life Un-Interrupted Experiences
Worth Every Penny Lanny Keithley Cost Vs. Value How To
A Scottish Accent Rosalie Macrae The King And I Experiences
New Members Listing Welcome To Our New Members News & Events

 

 

 

 

Mike Rosenkranz Becomes WW Board Member

 
 
Mike was born in Brooklyn, NY, served in Greenland during WWII, moved to Maine as a bachelor, and six years later moved to South Florida with his wife and two daughters. The move fulfilled the vow he made when he returned from the service that he would find a warmer climate to settle with his family. That was 51 yrs ago and he still loves it there.
 
Mike had his surgery in January 1999 and joined WebWhispers later that year. He served as back-up moderator under Dutch for a number of years and is still there if we need him. He now serves us as Co-manager of the Forum. His sense of humor has pulled many of us through whatever we had to face and he is excellent at putting together ideas and coming out with something useable. He has not only been an active participant in WebWhispers, but serves his local support group, the New Voice Club of Broward County (FL) as Director and as Editor of the New Voice News, its monthly Newsletter.
 
We look forward to working with Mike in his new capacity.
 
 

The Forum

 
 
When we set out to find a bulletin board that would work better and offer WW more than the one we had, we found Delphi in early 2001. The Forums there had all of the capabilities we needed and had about 4 Million members with forums on every topic you can imagine. It was one of the highest rated forum hosts on the Internet. Most of these forums are open to any Delphi member and you will automatically be admitted to most. Our WebWhispers Forum is not open. It is private and open only to WebWhispers members or authorized guests so while you must join Delphi to get to our WW Forum, which is managed by them, the joining process has an extra step. We require a one-time code for your entrance into our Private Forum. Therefore, after you join Delphi Forums, the first time you try to go to the WW forum, you will be stopped at the door for a code.
 
Just write Need Code and sign with your name. Delphi will send this request to us and it confirms your new Delphi membership. We check your WW membership and add your new Forum Name to our Membership Roster listing. Next our Forum Managers will send an email with the code word, which will allow you access. This is a one-time code. After that, you should go straight to the forum from the Forum link at the bottom of the WW list emails or through the Icon on the Forum Page in the Members Area on our website. It should not take longer than 24 hours although we are just getting a new system set and it could have a delay along the way.
 
We have very few rules in the Forum. We have discussions about food, learning to talk, traveling, our stories, what we read, hobbies, our email list and sports. We tend to ask people who post needing health information to post on our email list where they will receive more answers.
 
You may go to this address to join Delphi.
http://forums.delphiforums.com/webwhispers/start
If you are already a member of the WebWhispers Forum, using this link at the bottom of our list emails will take you directly to the Forum anytime.
 
 
We are pleased to be able to offer you this fun place to get better acquainted.

 

Pat Sanders
President WebWhispers
 

 

 

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

 

A very similar article was originally published in The Florida Journal of Communication Disorders, Volume 19, 1999. This article has been changed and updated with additional information but we have also obtained the permission of the Florida Association of Speech-Language Pathologists and Audiologists for this reprint. So, why update and reprint? Because the information is needed and is not readily attainable. It seems as if every year, a speech pathologist calls me regarding this procedure. Either they have a patient who has been a long term near-total laryngectomy who is having difficulties or their surgeon is performing the procedure on a patient. And the Speech Pathologist needs to be educated in order to provide the best care to this patient population. So, what better place to publish the information, that Web Whispers, where the article and it's information will always be available.
 
 

The Near-total laryngectomy and the role of the speech-language pathologist

Part I: What is it?

Lisa M. Proper
 
 
The near-total laryngectomy is a surgical procedure for the treatment of laryngeal carcinoma that includes voice restoration. This procedure was perfected and initially described by Bruce W. Pearson, M.D. I had the privilege of working with him for more than 15 years prior to his well deserved retirement. The surgical procedure generally incorporates the removal of most of the larynx while preserving a narrow portion of tissue that connects the trachea and the pharynx. This portion usually includes a part of the uninvolved true vocal fold, its innervating nerve (the recurrent laryngeal nerve), and the unaffected arytenoid (Pearson, Keith, & Woods, 1983). However, in the hands of an experienced and skilled surgeon, a successful extended near total laryngectomy is also possible. This extended version utilizes the ventricular or false vocal fold in place of the true vocal fold, which is necessary if the true vocal fold has been invaded by carcinoma. The preservation of a laryngeal remnant and a pharyngeal mucosal flap coupled with adequate innervation are paramount to this surgical voice restoration technique. Additionally, I have heard Dr. Pearson speak of the absolute need for the surgeon to utilize the specific described surgical techniques, as variations to these techniques increase the likelihood of complications and surgical failure.
 
The near-total laryngectomy is performed as a primary surgical procedure where the surgeon utilizes remaining laryngeal tissue and portions of the surrounding pharyngeal tissue to form a composite shunt (Pearson, 1981). This sphincteric tracheo-pharyngeal fistula or shunt is shaped somewhat like an inverted cone and lies between the trachea and the pharynx. The conical base is in the trachea and remains open, while the pharyngeal end or tip of the cone is similar to a one-way valve. Utilizing the remaining laryngeal remnant and placing it in a purse-string type shape forms the valve. This purse-string shaped valve remains closed at rest to allow for the preservation of swallowing. This closure necessitates muscular tension within the tissues to occur. Exhaled pulmonary air passed into the shunt allows this shunt to open to produce voice. Therefore, the shunt's valve is a fine tuned, dynamic muscular segment, necessitating increased tonicity at rest and swallowing allowing the shunt to remain closed but also this same tissue needs enough relaxation abilities to open to allow air to pass for voicing.
 
The vibrating segment or voice source differs between patients. Clinical observations have demonstrated variations of the actual sound source or vibrating segment. The vibrating tissues responsible for voice have been observed within the shunt itself, at the vocal fold remnant, in the pharynx and even in multiple places such as the vocal fold and pharynx (Pearson, personal conversation, 1987).
 
This procedure differs greatly from similarly named procedures, such as hemi-laryngectomy or partial laryngectomy. It should also not be confused with the identically termed near-total laryngectomy procedure that is performed by the more recent surgical technique of transoral laser micro resection. The near-total laryngectomy procedure described herein is performed by traditional surgical techniques and does not incorporate the use of a laser.
 
Patient candidacy is determined by the surgeon and is based on many factors. Some of these factors can be determined preoperatively while other conditions can only be determined during the surgical procedure itself. Criteria for near-total laryngectomy consideration include a tumor size III, minimal pharyngeal metastasis and at least one mobile vocal fold (Woods, 1980).
 
In general, some patients who were previously deemed candidates solely for a total laryngectomy procedure may also be candidates for the near-total laryngectomy procedure. The tumor location may be essentially anywhere within the larynx, unilaterally or bilaterally (as long as the aforementioned are persevered) as well as in the pyriform sinus if there is no posterior cricoid involvement (Pearson, et. al., 1983).
 
Experience has also demonstrated that patients who have been irradiated in the laryngeal area are not ideal candidates for this surgical procedure. It is known that previously radiated tissue tends to have reduced healing properties. The pharyngeal end of this composite shunt made during this procedure is a dynamic tissue segment and necessitates optimal tissue health to allow for the adequate functioning. This not only includes immediate postoperative functioning and healing but also long term adequate functioning to avoid postoperative complications and shunt failure.
 
The advantages to a near total laryngectomy procedure are a decreased vocal rehabilitation time as compared to esophageal speech and complete elimination of patient care and maintenance as compared to the tracheo-esophageal puncture procedure. Pearson and Woods (1980) indicate additional advantages over tracheo-esophageal puncture including: air passage into the pharynx, rather than the esophagus, decreases air passage into the stomach; it is less susceptible to malfunction due to inattention; the shunt is "epithelialized and stable"; and the lack of prosthesis not only completely eliminates patient care but also eliminates the chance of the shunt closing. Improved vocal quality and prosody have also been noted as an advantage to the near-total laryngectomy procedure.
 
Studies have compared a near-total laryngectomy voice to that of an excellent tracheo-esophageal puncture voice (Trudeau, 1987). Clinical experience has demonstrated the near-total laryngectomy voice may have a higher fundamental frequency, improved pitch variation and range as well as a vocal quality of a more even tone. The author's first experience with a near-total laryngectomee speaker, in 1987, was one of surprise as the elderly female's vocal quality was thought to be that of a slightly low pitch and mildly breathy laryngeal speaker.
 
The disadvantages to a near-total laryngectomy procedure as compared to a total laryngectomy procedure, with or without a primary tracheo-esophageal puncture, include an increase in the technical demands placed on the surgeon, an increase in surgery time, reduced patient criteria standards, as well as technical complications with the shunt itself. As with most surgical procedures, the near-total laryngectomy procedure may have complications, which may interfere with speech pathology intervention.
 
One common problem is the inability to achieve functional voicing despite all efforts by the patient and speech pathologist. There may be several anatomical reasons for this problem including continued edema, scarring in the fistula itself, the valve portion of the shunt not opening or being "too tight", etc. Another complication may be that the shunt is flaccid or "too loose", although this is not a problem for voicing as these patients generally have excellent voice from the onset, however, this problem may cause aspiration and the surgeon may request that no voice use occur. The surgeon manages these complications along with most complications involving the near-total laryngectomy.
 
The specific therapeutic management of the near-total laryngectomy will be discussed in part II of this article which will be published in VoicePoints next month.
 

 

 

 

 

Dear Webbies,
 
 At the IAL meeting in Burlington, this past July, Barb Stratton approached me with a proposal for a bit of subterfuge! She wanted to write a tribute to Pat's contributions to WW but she felt that if she submitted it through the normal channels, Pat would either edit it to smithereens or just not print it at all. She asked if she sent it to me, could we circumvent Hawkeye Sanders? I told her I was sure I could enlist the help of Len Librizzi and thus this plot was hatched. To my knowledge, we succeeded and Pat has only read this now... as you all do.
 
I think a little background on Barb might be helpful. She was one of several alternate moderators Dutch trained prior to an IAL meeting several years ago, so when he and Pat were both out of town, they could breathe easier. As WW expanded, the Moderating job was an easy one for him to let go of; that way he could attend to managing the list and everything else he did. The Forum was another branch that could be delegated and he chose Mike Rosenkranz for that job. Then when doctors' visits and hospital stays began to eat into his time, he concentrated on teaching both Mike Csapo and Barb the list manager duties, as well as moderating. For a while they swapped jobs each month back and forth, and after several months realized they each had a preference - Barb's for moderating and Mike for list managing. And under Pat's guidance, things just kind of fell into place as Dutch became less accessible. The rest of the recruiting Pat did pretty much herself, seeking their input now and then on responsibilities. Despite her daily involvement, Barb keeps a low profile. She is not a lary; her husband has been since 1999, and Barb became involved with WW in 2000 as a caregiver. I think her continuing involvement, even in the face of her own medical issues, just points out the critical role caregivers play in the ongoing success of WW and the lary community.
 
What she writes about Pat is certainly true and Len and I were only too glad to be a part of the "Stealth Tribute"
 
Donna McGary
 
 
A year ago last spring, Pat, clearly in tears, called me and said, "I am afraid Dutch might not make it." It was hard to believe - even after seeing the pictures he posted of his angry looking fistula - that our founder and mentor would not be around forever. What Pat did know for sure was that whatever measures his doctors pursued, he wouldn't be able to maintain his 24/7 running of WebWhispers during his treatment and recovery for an unknown amount of time.
 
It was with kid-glove finesse she set about encouraging him to turn over bits of knowledge and advice about making our website accessible to more than a single individual for updates. Until then, if something needed to be changed, it was Dutch alone that could trigger the correction. Pat recognized that it would take many hands to fill his role, and we needed his help along the way to get a "new" system set up with his blessing. The goal was to make it as identical as possible, but maneuverable without him. And not sound like it was a "before you die" thing.
 
She gathered a crew - some already active in the running of WW, and some new and talented in Internet software applications who could say you can't do that, but we can do this and reach the same goal. She sent out applications for grants, knowing whatever we did was going to be expensive, and she recruited and made optimum use of volunteers to lighten the new financial burden.
 
It will be a year next month since the new site clicked into place. We made it over all the speed bumps and unexpected curves that were thrown, and have not only held together our wonderful group, but increased our roster by over 550. The management of new member information and updates is accurate and speedy. Archived lary-oriented wisdom from members and professionals is easy to access from the website, as is member information. The Forum has become more active than ever. And it isn't any easier to slip something unacceptable onto the List than it was when Dutch was Moderator!
 
This may be the first ever article in Whispers on the Web to bypass Pat's compulsive red-pencil edit, but we knew it would never fly if she saw it first. We just wanted all members to know that she deserves a lot of credit for all that we still are today, and say thanks for your foresight Pat! Dutch would be proud to see how his baby is thriving with only his dreams, not his hands at the helm.
 
Barb Stratton
 

 

 

 

 

Bali

Colin Bolton

 

 

Wyn and I have visited Bali for the past 25 years it being our favourite Asian destination. In the latter years we were able to go twice a year for four and five weeks, after my surgery in May 06 we had decided that further trips were impossible. I am also semi crippled with an inoperable ruptured Achilles' tendon making things more difficult. This was as a result of a reaction to the Antibiotic “Cyproxin” that supposedly affects 1 in 1000 people over the age of 60 and this is exacerbated by the medication (steroids) I take for COPD. We

Bedugal Temple By The Lake

would also have to carry a nebulizer that I need to use three times a day. So that along with the constant cleaning we are all accustomed to, the possibility of a voice prosthesis coming out, leaking etc. seemed to make even the thought of another trip a formidable task.

 

We learned that two lots of friends also regulars to Bali were flying out on the same date as each other, without telling anyone we quietly made enquiries re the availability of seats on the same date and that was influencing our thoughts. With my walking difficulties Wyn suggested perhaps we should hire and take a wheelchair with us. (At home I use a mobility scooter) this was a bit like waving a red rag to a bull so I made almost daily trips to the gym walking on the treadmill for 30 minutes and riding the exercise bike this gave me sufficient confidence to rely on my own two feet. Taxis are cheap and the local transport - Bemos which we are used to using cost about .30 cents to travel anywhere in the local area. These are small vans that you can be sharing with people going to the markets and taking their chooks and veges etc. So we knew that once there getting around was not going to be an issue of major importance.

 

My Balinese family

It was quite a big decision to make before actual booking was made and we mentioned our thoughts at the head and neck clinic Prince of Wales to Head and Neck team at P of W as one they all said "Go for it" with that we both agreed to hell with it we are going! So a booking was made for the same date and flight as our friends, (still without telling them) We booked Garuda Business Class as this gave us an option to change your return dates if anything untoward happened. (as well as the extra comfort and service) Our friendly travel agent came to the party allowing us to book seats with no payment or confirmation until three weeks before departure. With the medical problems I have it is impossible to get overall insurance cover, they even consider a bypass operation 19 years ago a pre existing condition and will not listen to the argument that, that was a problem fixed! So heaven knows how they would react to a Laryngectomy and a hole in the neck to breathe through! So as we usually do we took out normal cover that would deal with accidents, luggage loss etc.

 

We had only travelled business class once before that was on our 50th wedding anniversary when I had booked the tickets and hotel without telling Wyn and given them to her at our anniversary party a week before departure. No problems there just a very positive reaction, if I told her now we were going again next week I would only get the same reaction again. The trouble with flying business class is that once you have done it you don't want to revert back to cattle class, it gives you express check in, speedy luggage retrieval, heaps of leg room and the Qantas lounge at Mascot and the Garuda equivalent in Denpasar. The Qantas lounge is impressive comfortable lounge seats, buffet breakfast (or whatever is appropriate for the time of day) the daily newspapers and internet access. There is no need to leave this comfort zone until 20 - 30 minutes before boarding depending on where the boarding gate is.
 
We eventually met our friends at the boarding gate much to their surprise; their first thought was that we had come to see them off before realising we couldn't have got past security and immigration. A lot of excitement and incredulous surprise as well as the delight we were making the trip.

 

The flight to Denpasar is 61/2 hours outward and due to prevailing winds 51/2 hours coming home, it was on landing at Denpasar, I soon realised I had made a mistake not ordering a wheelchair for the airports, we had landed at a gate at the furthermost point of the airport and the walk was long and tortuous, despite being first to disembark we arrived at visa control and immigration at the back of a very long queue that was painstakingly slow. We went straight through customs unchecked and it was with relief on exiting the airport we saw a familiar smiling face waiting to pick us up and take us to the hotel. On our arrival at our hotel “Swastika Bungalows” Sanur we were met with a great deal of emotion and tears as we met different staff, this continued throughout the next couple of days as we met old friends. Don't be alarmed with the name "Swastika" The swastika is an ancient Hindu symbol for the sun wheel - a sign of prosperity and good fortune and is depicted in reverse to the Nazi symbol. One thing I did miss on arrival at Denpasar was the smell of Bali-the spices and the spent rice paddies being burned. At the hotel we had 5 bouquets of flowers welcoming us and fresh flowers every day.
 
The Balinese are very curious people and wherever we went were very sympathetic and helpful but had no

Mother & Daughter friend of 25 years

understanding of what had happed to me. Some of the questions were _What happens when you drink? Can you still eat? Will it get better? Will it heal up? With my very limited Indonesian language skills it was impossible to explain. To this end I had taken a photograph with me with no cover on my stoma. This did the trick for the really curious. I had also printed out a little card saying _Suara saya hilang saya tidak bias bicara" - I have no voice I cannot talk! And had this with me all the time in case I had a blockage of my T.E.P. I had also translated the emergency card given to us by the association on joining. Despite my best efforts I could find no information as to whether a Laryngectomy had ever been performed at the Denpasar hospital or if there were any Laryngectomees or speech pathologists I somehow doubt it. Amongst the locals cancer is never mentioned and it would be more likely to be bad spirits and. or a curse and a local Dukan (healer) rather than a doctor consulted.
 
The first couple of days were difficult, Balinese bathrooms are notoriously ill lit and until we became accustomed to the ritual it made things very awkward and at times I finished up on the patio in bright sunshine with Wyn holding a mirror and had a few bemused looks from passers by. The biggest hurdle was the prosthesis strap, locating it and securing it, something I have enough trouble with it at home and why on earth Blom Singer made the indwelling prosthesis and strap in clear plastic I will never know perhaps Michael Schaffler our sponsor could take this on board. Let's face it is never seen so it's not a cosmetic issue and it blends in with mucous beautifully grrrrrrrr.
 

Smiling, smiling ever smiling

It was nice to feel sunshine and warmth after the ghastly winter we had left behind and we spent a great deal of time lounging around with me looking longingly at the pool. We did no touristy things having been there done that over the years and the shopping these days is little more than curiosity value for us. It was good for Wyn to be eating out every day and a typical evening meal of two courses plus a beer and water would cost in the region of $12 - $16 for the two of us. During one meal I covered my stoma and spoke to the waitress who almost dropped her tray. The hotel staff were even more attentive than usual, they address us as Mamma & Pappa and that is how they treat us, anything that could be done to make it more comfortable for us was done without us having to ask.
 
I had a slight problem with my hand luggage at customs/security on the return in Denpasar and I could not be bothered even trying to explain why I was carrying the various items - I flashed my Indonesian worded card saying I had no voice and was quickly waived through. Just starting to settle back in at home and missing all the friendly smiles and eagerly awaiting the next time
 

 

 

 

 

STROKE!

Part One
Vicki Eorio
 
 
It had been a wonderful, wonderful five days! My son Matt, daughter-in-law Teresa, and Sophia, the most beautiful 16 month old baby in the world were here over the Memorial Day holiday and stretched their time here to five days. Every day was special. Sophia and Annie, our dog who is much bigger than Sophia, bonded. They shared Sophia's food. She would feed Annie a little of whatever she was eating. Annie, out of love, ate things she never would have tolerated from anyone else.
 
The cats played hide and seek with Sophia. She would clap her hands and try to run after them. They would stay just a tad outside of her reach. It took her awhile to adjust that they were one part of her world she could not control. (Hmmm, wonder where that control issue comes from, must be Teresa's side of the family .)
 
Hours were spent in the baby pool. The slap of wet little feet were heard as Sophia watered plants, chased bugs, and squealed at birds. She was so funny and knew it. When I would remove my speech device to cough, even if I turned my head, she watched me intently. Soon she was imitating me, putting anything over her throat and coughing. Then she would continue whatever she was doing. Grandma was hysterical!
 
Although the visit was close to perfect, I didn't feel "right." I wasn't sick, I didn't have any pain, except for several headaches, which are unusual for me, but I did feel shaky and kind of weak. I stopped picking up Sophia from the floor, would only do it if she was in a chair. I don't know why, it just didn't feel safe to do it any other way. At times I felt "spacey", if you know what I mean. It wasn't the first time I had felt these things but, as before, I rationalized that I was tired, I was excited, I was coming down with something; the list of excuses was long. But I refused to miss a minute with my family since they come down too seldom and so I just kept going and didn't say anything.
 
With many tears, I waved goodbye to the kids as Frank drove out of the driveway to take them to the airport. I laid down for awhile and then got up to pick up things and get mentally prepared to return to work in the morning.
 
Wednesday morning I woke up nauseated and woozy but there was no time for that. I had been off work almost a week and had to get back. As I was washing my hair in the shower, my left hand stopped working. It wouldn't scrub my head. Then it fell to my side and I couldn't lift it up. I remembered from my nursing days that one of the tests of neuro status was to touch your finger to your nose. I lifted up my left arm with my right, tried to touch my nose and almost put my eye out. I knew I was having a stroke but for some reason was not afraid. I tripped getting out of the shower because my left leg was getting weaker by the minute. I was able to get upstairs where I wrote a note to Frank, "Call the doctor, I am having a stroke." He looked at me, not sure what was going on. I wrote "Call now, please." And he did.
 
It was early enough in the morning that our doctor's office was not open but he got our PCP's answering service. Our so special PCP must have gotten the message right away because he called back saying "Go to Gwinnett Hospital immediately. They have one of the best stroke units in the country. And go now. The damage may progress. You need intervention right away."
 
You are reading the writings of one of the most stubborn and stupid people ever. I refused to go until we cleaned the trach and I put on a little makeup. Frank was furious. I was in this deadly calm state. I was not afraid, I didn't hurt, but my mind was racing.
 
So once the trach was clean and the prosthesis clear and I had a little makeup on, I got in the car. My poor husband felt forced to drive very fast to Gwinnett, almost 30 miles away in morning traffic.
The ride was quiet. Frank would ask, "can you talk?" "yes". "Do you hurt?". "no". "Are things changing?" "I don't know." The only thing I asked was that he not call work or family until we knew what was going on. As private as he is, that was fine with him. It would have been a terrible burden for him to make those calls.
 
I was able to limp into the hospital. They were waiting for me and I was in ER within 3 minutes of a cursory check-in. In about 15 minutes, my left side would not work at all and they say my face was drooping. I was talking, talking, talking. Making jokes out of everything. That is how I tend to handle stress. And I continued through the MRI of my head, which showed this was a clot and not a bleeder. The ER doctor said he didn't know what the prognosis was but he did not want to give me the anti-clotting drug without a consult. You can imagine my reaction to that! Because by now when I couldn't move, I was moving from calm to fear, intensified by my outdated medical knowledge but knowledge just the same. I did know that I was fortunate the clot was on the right side of my brain so my speech would not be affected.
 
When I was diagnosed with laryngeal cancer seven years ago, there were several angels who helped save my life. I use the word "angel" because I don't know a better word. Dr. Goephert at MD Anderson promised me he would give me a voice. Dr. Jan Lewin promised she would help me learn to speak. And they kept their word. I was/am so lucky! To this day I wonder why everything worked out for me but didn't for others.
 
So now once again angels appear. Dr. Nash, his assistant Karen Young, appeared in the ER. Karen said that a double blind study was being conducted on "fresh" stroke victims that had the potential to stop the death of more brain cells and even minimize recovery. If I qualified medically, would I be interested in participating? I said yes because I felt I had no other options. Frank was very hesitant until he was assured that participation in the study would not preclude the usual stroke care and that I would get all of the usual resources. I am so glad he was so diligent. I certainly was not thinking critically about anything.
 
The paper work was impressive as you can imagine. The study was being monitored by the FDA and funded by a pharmaceutical company (of course). There was no guarantee that I would get the drug. Because of the importance to me as a patient, Frank as my family, and the study, they made me read the information twice. I signed and immediately started to retch.
 
Karen is a large woman with the kindest heart in the world. She wrapped her arms around me and I finally cried. My defenses were gone. I was exhausted. With one exception, I was starving! And I figured that if I was in big trouble, would a Big Mac make a difference? I begged Dr. Nash for one and he sent Frank to get one.
 
In the meantime they started administering the experimental drug which was to take 6 hours. I had three IV lines available for whatever might be needed. Dr. Nash sat at the foot of my ER bed, never moving, just watching the vitals.
 
Frank came back with my Big Mac, something I have maybe 4 times a year. I tried to eat it, and it tasted SO good. Nothing wrong with the fries, either. After about 3 bites, I pushed it away. It was as if Dr. Nash knew that would happen. I flopped back on the bed and let the tears come. There was absolute silence in the room, which is what I needed. Dr. Nash at the foot of the bed, Frank on one side, Karen on the other.
 
I couldn't move my left arm, my right arm had an IV in the crease where the elbow is so I couldn't bend that arm and of course my ability to speak was a bit compromised. So I banged the side rails and there was Karen, with tissues, and Frank holding my hand. And that is how we stayed for the next six hours.
 
Continued, next issue.
 
 

 

 

 

 

OUR KIND

 
 
I have just heard from one of my oldest childhood friends. He was my boyfriend starting in first grade, and we marched together during HS graduation, although by then, we had gone our separate ways. He moved to NYC and went to Columbia, studying both law and medicine. I joined a cult. We lost touch.
 
But the bonds forged in childhood are not easily dissolved. We reconnected a while back and the years had done nothing to diminish the special connection two goofy little kids felt as they rambled off to school together (almost always late!) nearly fifty years ago.
 
I have been through cults and cancer and divorce and single parenting. I have loved and lost (or changed my mind) so many times I have lost count. I have faced up, come to terms with, dealt with, moved on, made my peace with, had a Zen moment with a whole lot of living and I regret very little. I made my bed... I can sleep in it.
 
My childhood friend has had a much different row to hoe. He was always special but his gifts were rarely appreciated. I will always berate myself for not standing by him in high school. He deserved better. I knew his whole family; of course, we were all neighbors back in those days. Since we parted ways, his beloved younger sister died in NYC... she was the sweet wild child... a gifted musician... think Laura Nyro... my friend blamed himself- he is like that. The loss and guilt sent him into a terrible downward spiral from which he recovered only with great difficulty. He is a gifted writer and editor, has a devilishly sharp sense of humor, but has remained an iconoclastic loner. I fear it has been a lonely life, as well, for my old friend. Then last year, his stable, reliable sister, just one year our junior and a wonderful, smart, funny, loving woman with an ebullient personality committed suicide, apparently as a result of disastrous side effects from a physician prescribed SSRI (Selective serotonin reuptake inhibitor). I knew both of these women. They were just girls then... beautiful, laughing girls. Now they are both tragically dead and that family will never recover.
 
Cancer seems suddenly so much easier.
 
I had written to him after I learned, belatedly, about Joan's death last May. We had maintained an e-mail correspondence somewhat regularly for the first year or so after we re-connected (via the internet, of course!). I let the ball drop for a while when my dad was sick and then it just never resumed... until another old friend happened to mention it. I was horrified that I hadn't written to him at the time... and he of course would have too paralyzed by grief and anger to reach out to me... after all this time. He wrote back, eventually with some details, and then again, just the other night.
 
He had been cleaning out some papers and came across a quote he had jotted down from somewhere. "Human beings are social animals. We need to belong and we need to be with our kind." I thought it sounded familiar, but couldn't place it until he reminded me- it was from one of my columns here. He said it reminded him of Joan, who was, in the best possible way, such a social animal.
 
He wrote, "I think that your quotable quote has sort of universal application... myself always the exception. I have many friends in this city. But the idea that I, myself, have a "my kind" blows my mind. (It seems so preposterous)." I have no doubt my old friend is right about himself and there is nothing I can do to change that. Even as a life-long friend, I will always be on the periphery of his solitary world.
 
At Web Whispers, we are so very fortunate. We can make all the jokes we want about belonging to a club we never wanted to join or never wanting to join a club that would have us a member, but we are among friends and allies here... people who are "our kind" in a unique and essential way. Being a lary does not define us; indeed for most of us, despite its life changing aspects, it is several steps down on the ladder of words we use to describe ourselves. There are those among us who have made lary education, support and outreach their raison d'etre, but that has more to do with their personalities than being a lary. If it wasn't lary education, it would be something else.
 
We really are a family and you know what they say... you can choose your friends... HAH! So, in a way, we are stuck with each other. This motley band with holes in our necks and funny voices who keep on truckin'. Maybe we should make a banner that satirizes the Spirit of '76... one where we all have scarves around our necks and some with thumbs occluding and maybe an EL and a headset amplifier! We are a gutsy group and we do belong and we are, here at WW, with our kind. Welcome home.
 

 

 

 

 

Life Un-Interrupted

 
 
My mentors’ defined "total rehabilitation" as healing and compensating until we are able to resume life at a level that comes close to what we experienced before our lives were interrupted. That is the definition I would like to use as our goal. In the case of laryngectomy, there is significant healing, rehabilitation, and adjustments to master and most of us do experience progress; it's just a matter of time.
 
I don't believe I've ever met a laryngectomee who didn't experience some level of shock and disbelief when the diagnosis of cancer arrived, and radical surgery was recommended to save his or her life. Personally, hearing that news and taking it in completely took 15 years to finally reach my core -- only then I was able to absorb the full impact of all the changes.
 
It happened during a Social Worker's lecture on grief as she talked the conference audience of laryngectomees through all the stages of recovery. When she got to the portion dealing with reality, and used the word "amputation" it hit me like a ton of bricks. Tears began to well, and soon I was sobbing and quaking (in public) over my personal loss...for the first time. I had been too busy living my daily life, making nice for others, to mourn my own loss. It wasn't necessarily a "pity party". In the steps of grieving it was one of those bases you can only skip for so long, but it must be touched eventually in order to heal well.
 
In addition to losing a physical part of our body, we must also face losing our natural voice, something that is associated in so many ways with our personal identity. We want it back. We recognize that for those whose voices were their career it is particularly devastating. Some notable actors/singers have refused the surgery mainly because they believed their career would be over.
 
Change is scary for most folks. The challenge of developing a new voice that sounds right to our own ear is a very personal one. We may have to work diligently to get there due to delayed healing, and other set backs. I know; it took me a long time to move through all the various speech methods. It still surprises me when people recognize my esophageal voice on the phone. It's nice to have a new vocal identity. My mother said I sounded just like my old voice. I think she was referring to my manner of speaking: phrasing, vocabulary, intonation, and all. Thanks, Mom.
 
Once we master all the tricks of dealing with the stoma, hopefully we are ready to go back out into the world. Caring for trach tubes, coughing, and endless mucous at first may cause us to wonder if we will ever be able to manage outside of the home and socialize again. Eating in public can be another tricky matter to handle.
 
We women look longingly at the ads picturing women who have no concern about how to cover up a stoma and surgical scars. My friends were all starting to wear the little diamond pendants on a chain when I got what I called, "my 25K hole in my neck". Yes, it was a long time ago! Where there is a will, there is a way...and most of us find it, or make it. Men also find very clever solutions themselves. I've seen everything from mock turtlenecks, clip-on ties, and a button sewn on top of the second buttonhole (to allow a hand to slip under the shirt to catch a cough) to duct tape used on stoma covers at the back of the neck since it goes unseen with a jacket. Yep, I've seen it more than once.... and of course it works!
 
If we are successful with all the above steps we are faced with a new set of decisions.
 
Now what? Life does go on for many of us. What to do with this gift? That is the question. Will it be back to work in the same job, career or profession? Will it be early retirement to enjoy life, however long that may turn out to be? How to finance such a change may call for drastic lifestyle adjustments. It may include a move and that dreaded word we hear so often now, "downsizing".
 
Fearlessness is required for change. You've come this far. There is no doubt you have courage. That means, "feeling the fear and doing it anyway"; whatever it is. If ever you were told to "follow your bliss" this would be a good time to figure out what that means to you. How do you find out what that is? One day at a time. Life happens, and leads us to the next step. A good clue may come to you in your dreams at night or if you allow yourself time to daydream; they can be especially rich sources of inspiration.
 
If your finances and responsibilities permit, widen your horizons by traveling. I began by flying by myself across the U.S.A. to attend a family funeral just 6 months post-op. It was 10 years post-op when I learned to downhill ski. It might be fun to take a cruise, or learn to sail. You may now have time and space to adopt horses -- wonderful rehab for both of you. Your local Art Center has classes to teach sketching, and painting or perhaps you would like to start a new business. Learn to read, write and speak a new language; I did with an electro-larynx at the University of Nice, France just 9 months post-op. All that I've mentioned is do-able given time, but you have to be willing to try when you are physically able.
 
Joining a Laryngectomee Support Group is a good way to study how other laryngectomees have managed to compensate. It is also helpful in your own rehabilitation to share what you've learned with the newest members. Perhaps your local library or bookstore has a book club. Philanthropic organizations will get you involved in your community. Knitting Guilds will send you in a new direction philanthropically. Any Garden Club, or Conservancy would welcome you. Volunteering at an animal shelter keeps some of us busy. Whatever you are interested in knowing more about will get you out and interacting with people.
 
See if you can identify when you reached your point of "total rehabilitation", and started to move into new territory as a laryngectomee. Looking back over the months and years can you see how far you've come with your accomplishments? Your progress may sometimes seem as uneven as a chart measuring maturity or the stock market! Nevertheless, you will see your strengths, and what challenges lie ahead. Here's to your successes, and many more.
 
Elizabeth Finchem
 

 

 

P.S. Following the July IAL Annual Meeting in Vermont, I was..."Gone Fishing" at my daughter's lake home in Central Michigan for two weeks. I caught an abundance of large Blue Gill, and the biggest Large Mouth Bass of my 62 years of fishing. Delicious!
 

 

 

 

 

Cost vs. Value...

By Lanny Keithley
 
 
Last month, we delved into the concept exploring "Free Help is Seldom worth the Price". This month, we will extend those thoughts into evaluating what costs are appropriate to get the value we expect from the product or service we are purchasing.
 
One rule that I have used in my life that has saved considerable time and energy, is having a minimum cost level under which I do not consume any effort in trying to do better. I get what I like and don't worry about my normal 'cost vs. value' considerations. Say, my level is $10, for example. If I am getting something that is less expensive than that, I just grab the one that catches my eye and get it. Without having such a rule, I could easily spend hours trying to save a dollar or two and my time and energy are worth more than that. This is especially true with the gas prices of today. As my resources, and the value of my time, change throughout life, I adjust my personal minimum cost level as appropriate. Just implementing this concept should take care of the little decisions that can consume a lot of your available free time.
 
The concept of "Free Time" is having mental time available that you are not compelled to be focused on, or consumed by, the topic. When you're bogged down in constant worry and concern, you don't feel free inside. Managing the level of free time you allow yourself to experience is the real message in this article. One of the biggest areas of our available free, time that we have the ability to control and manage, is in selecting and purchasing all the things we need and want in life.
 
Throughout this article, I will be using three different product examples for discussion. These will be: a car to represent a large and important long term commitment, a puppy for the emotional and personal issues, and a broom for a non-emotional utilitarian, but required, object. Each of these items is above our personal minimum cost level, or we wouldn't even be wasting our time talking about them - right?
 
The first thing you need to do when considering any acquisition is to identify what it is and the real value it represents in your life. You also need to define and consider any available alternatives. Your first thought might be that you need a car but, if the real need is to commute to work, there might be other alternatives to solve that particular problem that are worth consideration.
 
Once you have decided to consider purchasing something, you need to identify all the real requirements and features you need in this product before you spend your time and energy searching for it. By doing this, you can limit your search by focusing on just the models and options that fit your parameters. It is easy to become confused about what you really want, or need, when you are in a sales environment with all your emotions raging. The better you can define your product before you start, the more successful your selection and resulting enjoyment of the product will be. Some of the topics to be considered in any purchase decision are:
 
* Your time and energy - You need to consider the value of your time and energy in the selection process. How much effort will be necessary to select the right product for you? How much effort is too much for this product? A car or a puppy is going to be around for a long time and worth serious consideration, whereas a broom might also be around for a while, but probably isn't worth spending that much time in the selection process. Put an appropriate limit on how much effort you will spend on any product.
 
* Purchase Costs - What is the extent of your resources available to purchase this product? Is it worth financing the purchase and at what interest rate? How much is it really worth to you? How much is too much? Shop around for the best price, but keep all these other considerations in mind. Don't spend time looking at a $50K BMW when you only have $25K to spend.
 
* Ongoing Costs - How much will it cost to use and/or maintain this product? What is the gas mileage and parking fees for the car, or the food and vet bills for the puppy? Don't forget to consider the non-monetary costs of the puppy, such as the barking, chewing and soiled carpets. You need to consider all the ongoing costs over the projected life of the product in your selection and purchase considerations.
 
* Quality - A major aspect of the value you expect to receive from a product is its quality. What is your quality tolerance level in the product? Would buying a used product be OK? Would having a scratch in the finish bother you? How emotionally involved will you be in this product?
 
There is an old saying that you should always consider on the topic of quality, "The bitterness of poor quality is remembered long after the sweetness of low price has faded from memory". Keep this in mind in all purchase decisions - trust me on this one...
 
* Features and Options - What features and options do you require? Which ones would be nice to have? Do you really need air conditioning or a convertible? Does the puppy really need papers? Do you need a matching dustpan for the broom? Be sure to get and purchase only the features and options you need and want.
 
* Guarantee - What type/length of product warrantee/guarantee do you want included with the product? Is the guarantee from the manufacturer or is it from the vendor where you are purchasing the product. Who will handle any repair or replacement issues that might occur with the product?
 
* Vendor Reputation - Check out the vendor's reputation, especially on large ticket or emotional purchases. If a vendor has a bad reputation, your guarantee might not we worth the paper it's written on. Always figure any customer's dissatisfied comments could be your complaints in the near future.
 
* Service/Maintenance - What are the service/maintenance requirements you desire in the new product? What comes with it and what optional service contracts are available and at what cost? Research whether extended service contracts are a good purchase, or not, for this type of product. Most extended maintenance contracts make big money for the salesperson and are of little value to the customer. But, for some products they are worth their weight in gold.
 
Considering each of the above topics will help to narrow all the available product options down to those that best meet your needs and wants. The amount of time you spend in this definition process will allow you to significantly reduce the amount of time you spend in the selection process. At the same time, it is helping to ensure that the product you purchase will actually provide all the value you expect from it - for the best price. In doing so, will emancipate some of your potential free time to enjoy your purchase and your life in general.
 

 

 

 

 

The King And I...

by Rosalie Macrae
 
 
Well for somebody who had been entertaining frisky-risque little Parisian demoiselles all morning, Elvis did a pretty good impression of my Scottish accent. Now how is that for a conversation stopper! And completely true. Bring on the lie detectors.
 
You couldn't escape this week, on radio or television or newspapers, the brouhaha about the 30th anniversary of the King's death. We may have her Maj in Britain but Elvis is our King. Believe me. He has more impersonators than the Beatles. As I write, our local Elvis look-alike is getting packed for a do with other Elvises at the Edinburgh Festival. With bagpipes would you believe! Definitely one to inspire heartbreak for the hoteliers who will be making his signature peanut butter sandwiches. Along with haggis and deep-fried Mars Bars. Exquisite taste my compatriots! This article should have carried a health warning.
 
As I was going to say, Elvis, coupled with the tenth anniversary of Diana's death -- the Princes say she adored him -- has made it a field time for the personal memoirs to come trotting out. Nothing, you will think, of special interest to our laryngectomee readers. But I give you my peg for an excuse to tell you my Elvis memory. Every story has to have a peg. Gimmick? Never.
 
Last week I plucked up courage after a few strong coffees, and started to listen to a private tape I made about a week before my larynx was removed so that the family might, one day, remember how I used to sound. It was not a very wise move really. Like going to the dentist and the toothache stops, so it was with my voice two years back. The rasp, which had become worse and worse, as the cancer spread sounded bad and painful as the reel started. But as I went on talking haltingly, then more passionately about my apprehension over losing my identity, the huskiness gradually cleared and just for a minute I sounded like my old self again. I had forgotten how the Scottish accent became more marked when I was feeling emotional.
 
Meeting Elvis could definitely fit into the emotional category.
 
And so it was that Elvis asked, in a pretty awful Inverness accent, if Miss Macrae took cream in her coffee. The Mississippi boys fell about laughing at his funny voice and one of them speed-dived across the Aubusson carpet of the Georges Cinq Hotel in Paris to hand me the cup… Limoges, knowing the Georges Sank. Elvis's tincture. It would have been a good memento and fetched a fair old sum at Christies. But I didn't do things like that because of having an uncle who was a verrrry grave preacher. Stealing, even from a palace of self-indulgence, was out.
 
I confess to once being an innocent accessory to a crime when having a beer in the Hofbrauhaus in Munich, where Hitler once screeched, a colleague from another paper -- a man from Reuters who should have known better -- persuaded me to conceal a souvenir stein on my person.
 
Back to Paris. It was 1960 or 1961. I had been posted to the French capital by my newspaper as a reward for persuading Rose Kennedy to talk about gilded son Jack at her Riviera villa in Cap 'Antibes. I remember her husband stomped around in the background, declining to come and join us, scowling across the morning room, and a frisson of sadness shadowed the face of the woman who had so much.
 
Ye gods. That sounds like a Jackie Collins novel. But… it was like being in one. Some months later, in Elvis's drawing room it was sweetness and lumiere. I was delighted just to be relaxing after six hours waiting in the corridor outside, perched on one of these straight-backed golden chairs, as used by guests being wined and dined by one of the Kings Louis at Versailles. There was only one King Elvis. It had been agreed to grant me an interview at three in the afternoon; an exclusive, because of the Kennedy connection which I had casually name-dropped to the Colonel. Elvis was having a couple of days in the French capital away from the German army base -- and Priscilla's surveillance I shouldn't wonder.
 
It was now nine in the evening and, down in the Avenue Georges V, the Sixties equivalent of the paparazzi were waiting. They would have parted with their best Rolleiflexes to be inside. It had been an entertaining six hours. Lots of girls, very, very beautiful -- top league, according to my photographer, perched uncomfortably beside me -- went into the suite with the hotel detectives. They were shown out later, before the next jolly lot arrived, after probably telling the Memphis visitors what they should see while in their fair city. Maybe aye or maybe hooch-aye as my uncle, the minister, would have pronounced. Meaning roughly that if you believed that, you would believe anything.
 
And then it was us. The room was dripping with splendid taste. There was a rich bouquet of scents from the recent visitors. I particularly remember picking out Worth's Je Reviens (I Return) and of course there were undertones of Dans La Nuit which doesn't need translation. Elvis was a total delight. Cliché? It was true. He changed into uniform to please the photographer. He was courteous, eyes of blazing blue, firm handshake, none of this mwah mwah stuff, kissing strangers on both cheeks. He didn't go for that. One of the henchmen told me that Elvis thought it lacked respect. 'That right Elvis?' he asked in a wheedly voice.
 
Elvis said that was right. He told me I was a lovely young lady, but he was too tired to talk much, and they were escaping down a secret exit to somewhere special. He needed to sleep first. I could write what I wanted in my paper. As long as it was nice. The gang laughed and I assured him it would be magnifique. He loved the way I said it.
 
'Man-ye-feek', drawled Elvis, and promised he would think of me every time he said it. If he remembered it. I sailed away in a happy daze. The office secretary, a White Russian aristocrat called Natalie, went into a huge sulk because I had forgotten to get any autographs. And back in Scotland my little sister Lorna was distraught. She would have been the school celebrity. I told her that Elvis sent his love anyway.
 
My eyes are filled with tears now. This always happens when you dig up memories. Lorna died three years later when she was just 17. How I would have liked to go back in time and get her an autograph. In my old voice.
 
Pass the tissues Therese.
 

 

Welcome To Our New Members:

 
I would like to welcome all new laryngectomees, caregivers, vendors, and professionals to WebWhispers! There is much information to be gained from our website, especially our Library, and from discussions held by our members on the email lists. Needless to say, we also hope you will revisit our newsletters.
 
Pat Sanders, WW President
 
 
We welcome the 32 new members who joined us during August 2007:
 

Bud Barnes
Moreno Valley, CA
Delma Beck - (Caregiver)
Findlay, OH
Kelley Bilinski - (Caregiver)
Wilmington, DE
     
Charles T. Black
Newport, WA
Jody Ann Black
Tooele, UT
Marvin Bond
Sheridan, IN
     
Jordan Bowen
Cumberland, RI
Vicki Carter
Athens, GA
Michael T. Casey Sr.
Holtwood, PA
     
Bonnie Christensen
Gilmore City, IA
Steven Crowley
Clemmons, NC
Colin Fairfield
Warwickshire, UK
     
Diana Green - (Caregiver)
Charleston, WV
James Green
Charleston, WV
Lisa Hanlon - (Caregiver)
Walnutport, PA
     
Michael Hanlon
Walnutport, PA
Margaret Holm
Laverne, CA
Dan Konz
Downers Grove, IL
     
James R. Krauth
Point, TX
Jeffery C Lohrmann
San Francisco, CA
Wayne Manning
South Royalton, VT
     
John J. Martin Jr.
Moore, OK
Janis Mitchel
Edmonton, Alberta, CAN
Laurence J. Nason
Bradenton, FL
     
Lynnetta Obrien
Virginia Beach, VA
Hayat Chand Qazi
Karachi, Pakistan
Doreen Seratt - (Caregiver)
Lockport, IL
     
Carol J. Stimac
(Returning Member)
Huntsville, AL
John Anthony Walker
Torbay, Auckland, New Zealand
Beverly M. Ward - (Caregiver)
Decatur, AL
     
Carl F. Ward
Decatur, AL
Dennis Wells
Jacksonville, FL
 
     

 

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

 

 

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