May 2004


 

Name Of Column Author Title Article Type
WebWhispers Columnists Barbara Stratton Reborn Experiences
VoicePoints T Wigginton M.S., CCC-SLP Pt 2- Hard Pill To Swallow Education-Med
Musings From The President Murray Allan CancerConnection News & Events
News, Views, & Plain Talk Pat Sanders WW Golden Agers Experiences
News, Views, & Plain Talk Pat Sanders Larynx Cancer Education-Med
Be All That You Can Be Stan Mruk  Another Bump In The Road Experiences
Bits, Buts, & Bytes Dutch Computer Tips Experiences
Welcome New Members Listing Welcome News & Events

 

 

 

REBORN

by WW Member Barbara Stratton,
caregiver for husband, Bob Stratton


The diagnosis, it was bad. Cancer T3 is what I had.
Cough, sore throat, all the signs, of just a cold - standard design.
We'll try chemo and radiation, to shrink and shrivel into salvation.
Shrank and shriveled but still not gone. What will the next decision spawn?

Surgery for 9 full hours. Please dear Lord, use all your powers!
But sure enough, they took my voice. My only chance. Their only choice.
Tube in my nose, tube in my wrist. Too tired to deal with this new twist.
Can't think now, except with sorrow. I'll have to rethink that, tomorrow.

I felt heartache - I could not speak. I saw heartbreak on my wife?s cheek.
Don't cry my love, and do not mourn. I'll talk again. I am reborn.
Meanwhile I'll just have to write. Please keep all my tools in  sight.
A pad, a pen, unleash my hand. My new life starts. Strike up the band!

I joined Web Whispers - friends on line. Help and prayers at any time.
They've been there, done all that, before. My problems they did not deplore.
Instead they told me what to ask, and how to deal with each new task.
I'm speaking now with a new voice. Took lots of practice, but hey, my choice.

Strangers stare but friends just smile. I am no longer up on trial.
I'm doing what I used to do, plus all the new procedures too.
I'm so glad just to be alive. I follow all rules to survive.
Eat well, exercise, keep stoma clear. Plan life not by day but year.

Speak to groups about their smoking. Show the neck hole - you're not just joking!
Visit new larys if you can and let them see how well things ran.
Share your history on our web and help the newbies with their dread.
This world's the greatest place to be. Enjoy, and share, and love, don?t flee.

This life was meant for you and me! Any way we chance to be.
 
 


 VoicePoints [ ©  2004 Dan H. Kelly, Ph.D. ]
  
  coordinated by   Dr. Dan Kelly, Associate Professor ( dy_kelly@msn.com )
                                Department of Otolaryngology, Head & Neck Surgery
                                7700 University Court, Suite 3900, West Chester, OH  45069

©April 2004 Tammy L Wigginton; M.S., CCC/SLP, Charlottesville, VA 

That's a Hard Pill to Swallow
Part I


     I attended my first IAL Voice Institute/Annual Meeting in 1998.  It was a wonderful experience and I learned a great deal about working with laryngectomees.  However, one of my most memorable learning experiences did not occur in the context of a lecture or one of the many hands on teaching session.  It occurred at the banquet.  Before the food was served, the room was filled with voices.  Then the food was served.  Suddenly, a room filled with people and only moments earlier filled with voices, became awfully quiet?  Then it hit me; it must be difficult for a laryngectomee, especially someone who uses TE or esophageal speech to eat and speak at the same time.  I'm sure all of the laryngectomees, their spouses, family and friends, will appreciate my penetrating glimpse into the obvious.  I found it fascinating to observe all of the ways people had developed to compensate for the fact that it was difficult to speak and eat at the same time.  As I looked around the room, I also noticed quite a few laryngectomees were having difficulty chewing and swallowing.  As a speech pathologist, I had been trained to understand the clinical implications of difficulty swallowing (malnutrition, dehydration, coughing/choking), but now I had an opportunity to observe some of the social implications of swallowing difficulty.

     Dysphagia or difficulty swallowing is one of the most common complications after total laryngectomy. Presently, the incidence of dysphagia following total laryngectomy has been reported to range from 10% 1 to 60% 2.  There is a great deal of range in the reported incidence because different people have different ideas about what qualifies as successful swallowing.  Some investigators 3 suggest if a laryngectomee can tolerate a soft diet, he has achieved successful swallowing.  Other investigators 4 regard swallowing success as the ability of a laryngectomee to meet his nutritional needs without tube feedings, regardless of the consistency of his diet (liquids, pureed food, soft food, etc.).  Ackerstaff AH 5 proposes 'such broad definitions of swallowing success may be adequate when evaluating the outcomes of different surgical techniques; they fail to accurately reflect the number of patients postsurgery who are unable to resume their normal, premorbid swallowing function'. Ackerstaff believes the figures reported in the literature underestimate the number of patients who may experience difficulties and associated distress related to altered swallowing function post surgery.  Ackerstaff 6 evaluated the functional disorders and lifestyle changes following total laryngectomy and found that as many as 25% of the laryngectomees reported alterations to their diet, including avoidance of certain consistencies as well as modification to their style of eating.

     Ward EC 7 reported 3 years post-surgery, only 58% of the laryngectomees included in their study 'managed' a normal diet.  Moreover, the laryngectomees who were identified as having long-term swallowing problems or the inability to eat a 'normal' diet identified themselves as having increased levels of disability, handicap and distress.  Even laryngectomees who did not have significant difficulty swallowing, reported slight level of handicap and distress resulting from taste changes and increased durations required to complete a 'normal' meal.  

     Eating and drinking are social activities as well as a means of meeting nutritional needs.  The inability to fully participate and/or enjoy the social aspects of simply eating a meal or having a cup of coffee with family and/or friends impacts overall quality of life.  Some laryngectomees report feelings of anger, frustration and embarrassment related to their difficulty and or inability to eat in social situations.  Some people will withdraw from social activities where eating and drinking are involved because of difficulty swallowing and/or communicating when eating/drinking.  Ward EC 8 found it interesting to note that a patient's perceived level of handicap and distress did not always correlate with the patient's actual degree of handicap.  In other words, the social aspects of difficulty swallowing bothered some laryngectomees more than it did others.

     Here are a few tips to remember if you plan to dine with a laryngectomee:

1.    Try to choose a quiet restaurant.  If you can not find a quiet restaurant, try to find a quiet place in the restaurant.  It can be difficult for some laryngectomees to be heard and/or clearly understood in a noisy environment.

2.    Do not speak for your laryngectomee dinner companion unless he/she requests assistance.

3.    Some TE and esophageal speakers find it difficult to speak and swallow at the same time.  If you notice your dinner companion is having difficulty, ask if you can be of assistance.  Often a questioning look from you and a shake of the head from the laryngectomee will be sufficient to indicate that no help is needed.

4.    When appropriate, you might want to limit questions to something the laryngectomee could respond to with a yes/no head nod or a gesture.  It is difficult to occlude the stoma or operate an artificial larynx and, at the same time, cut food.  At a buffet or during family style dining, it can be difficult for a laryngectomee to fill and balance a plate while simultaneously using a hand to occlude the stoma or operate an artificial larynx. Moreover, many laryngectomees recognize it is not considered socially appropriate to take food with one hand from a community plate or the buffet line and then use the same hand to occlude ones stoma.    

5.    To help put your dinner companion at ease, you may want to match your eating pace to his/her eating pace. It can be awkward if you finish your meal before your dinner companion.

6.    Develop a sense for what constitutes a 'normal' swallowing pattern for laryngectomees.  Some laryngectomees have difficulty with food lodging in their esophagus.  On occasion food that has become stuck may be regurgitated before the laryngectomee is fully prepared to cope with the situation.  Some laryngectomees with this problem may have to leave the table in order to find a private area to dislodge the food.  Also, coughing during mealtime may or may not be a good indication of difficulty.  Coughing during mealtime for TEP speakers could be an indication of prosthesis leakage.  Persistent significant coughing during mealtime could indicate the development of a fistula.  Or coughing could just simply be ordinary coughing; not related to any difficulty at all.  If you notice your dinner companion is having difficulty, ask if you can be of assistance.

7.    Remember laryngectomees have difficulty generating a continual air stream from their mouth. This can make it difficult to cool hot food by blowing on it.  Some laryngectomees wait a few minutes before beginning their meal to allow it cool.

8.    Some laryngectomees, especially ones who have had radiation therapy may need a lot of water to help them 'wash down' their meal. Help keep the water glass and pitchers full.

     In Part II of 'That's a Hard Pill to Swallow', we will explore the causes of swallowing problems as well as possible treatment approaches.

 Balfe DM; Radiology. 1982; 143:501-508
2  
Crary MA; Arch Otolaryngol Head Neck Surg.1996; 122:760-763
3
   Anthony JP, Clin Plast Surg.1994; 21:137-147
4
  Coleman JJ, Am J Surg. 1987; 154:394-398
5  
Clin Otolaryngol. 1994; 19:295-300
6
  Clin Otolaryngol. 1994; 19:295-300
7  
Arch Otolaryngol Head Neck Surg. 2002; 128:181-186
8
  Arch Otolaryngol Head Neck Surg. 2002; 128:181-186


                Murray's Mumbles ... Musings from the President
    
                  Canadian Cancer Society -
CancerConnection
                                          1.888.939.3333
 

    
Last year I attended an intensive three day course which is designed to allow cancer survivors to talk by telephone with anyone who has cancer or been diagnosed with the disease. This permits us to have vocal contact with anyone no matter where they reside.  In many northern Canadian communities there are few if any support groups.
 
     We are matched with an individual that the Cancer Society feels that we can help with telephone support. We answer their questions to the best of our ability and attempt to give them much needed hope and encouragement.

     When the "match" is concluded and the patient is satisfied that their questions have been answered and hopefully their fears allayed we "sign off" and submit a report to the Cancer Connection supervisor. 
 
     I think it is an excellent program for those living in remote areas who would otherwise not receive any one-on-one contact with a cancer survivor.
 
     To date, I have talked with only one male potential laryngectomee.  However, I have been "matched" with five ladies who were scheduled for radiation and had a fear of it due to lack of understanding of the procedure. One lady had cancer of the tonsils and the remainder were afflicted with breast cancer.
 
     I was able to assure all six that radiation, while unpleasant, could indeed save their lives.  I have now "signed off" on all six cancer sufferers and am awaiting the next call from a potential "patient".
 
     I find this type of remote caregiving to be extremely helpful to myself also as I can well remember when I was faced with the "unknown affects" of radiation therapy.
 
     See you next month.
 
Best regards,
 
Murray




 News, Views, & Plain Talk
  
                                                  by Pat Wertz Sanders, WebWhispers VP - Web Information
 

WW GOLDEN AGERS

     One of our WW members asked me recently why we didn't do more to celebrate the long term laryngectomees.  She said it made her feel good and more hopeful for the future to hear about people celebrating 5 and 10 year anniversaries.  I told her there were so many we couldn't keep up with them (a nice thought).  So, to benefit this member and others, as well as to satisfy my own curiosity, I went to our section of member listings where it has the year of surgery.  Anything in the 1990s was too common to count so I started with the 1980s -15 years or more as a laryngectomee and came up with 101 members from these years. 

One in 1944 (60 years a laryngectomee!)
One in 1955 (coming up on 50 years next year!)
Four are listed in the 1960s (35 years +)
Eighteen who had their laryngectomies in the 1970?s (25 years +)
Seventy-eight laryngectomees from the 1980s  (15 years +)     These are people who had their surgeries before there were computers in homes since back in the 1980s, only 8% of households had any kind of computer and there was no Internet for research anyway.  By 1990, computers were in about 15% of homes and by 2000, in 51%, a phenomenal growth.  I joined that number in 1995 when NONE of my friends and contemporaries had a computer. I was on Compuserve, one of the few choices for email at that time, and they offered forums on different subjects, a marvelous service for that time (but nothing compared to what we offer on WebWhispers now).  There was a Compuserve cancer forum with a few hundred members and some divisions as to types of cancer.  The Head and Neck Cancer section was not a busy place but there were perhaps a half dozen laryngectomees who would answer questions and this was my first connection with other larys besides the ones I had met here at home.  These few were spread from the East to the West coast and most became and are still active leaders today.

     There are many out there with laryngectomies done 30 years ago, but most of those people never had access to a computer.  Some of these are just now getting computers at the insistence of their children so they can correspond with the families via email.  Then they discover WebWhispers and are off and running with us! We are getting a number of people who have been laryngectomees for a while, but had no way of accessing us here.  Our number of WW Golden Agers is still going up.

Larynx Cancer - By the Bigger Numbers

     The CDC (Center for Disease Control) has some pretty interesting figures relating to percentages of the most common cancers.  The year is 2000.  It does take them time to get accurate statistics and percentages.

     Every now and then a laryngectomee will get very upset because larynx cancer does not get the appropriate amount of money for research, or for new voices for recent larys.  We would all like to see new research, particularly in preventing larynx cancer in the first place so or finding and treating it early.  Hopefully, that could save lives and prevent recurrences.  But our group is small.  It is hard to picture how tiny it is in comparison to many other types of cancer.  Some of us did not have larynx cancer, but most either had it as a primary or secondary location. I've tried to put their numbers into perspective.      Per 100,000 men, the number listed with larynx cancer were 7.8.  If you live in a city of one million people, the average would be that 78 would have had larynx cancer that year in your city, but let's say you lived in a small town of 25,000, there might have been 2.  Where the 7.8 men are having larynx cancer, 160.4 are finding prostate cancer, 87.9 have lung and bronchus and 65.0 have colon or rectum cancers.  Do you wonder they look at those figures and decide in favor of giving money for research to those top 3 that total 313.3 in 100,000 instead of 7.8?     For women, it is not even listed in the top 15 cancer sites, but it has to be near half the figure for men.  However, there will be 128.9 in that 100,000 group who will have breast cancer, 52.5 who will have lung and bronchus cancer, and 47.0 with colon or rectum cancers.  About 228.4 against about 4.     Putting these together in our mythical city of 100,000, in the year 2000, there were about 12 larynx cancers, men and women...and looking at the top 3 for both men and women, about 550.

     If you like to look at these kinds of figures, you will find a lot more on the CDC web site:

http://apps.nccd.cdc.gov/USCS/GraphV.asp?year=2000&group=3f




 
Be All That You Can Be
                                                                                    
Stan Mruk  (Laryngectomy - 1995)
 


ANOTHER BUMP IN THE ROAD

      In the past 10 years, having survived two battles with cancer,  pneumonia,  living with emphysema, a bout of alcoholism, a broken shoulder, other various bumps, bruises and such, a person could get the idea that anything can be handled.  And if you have ?the right stuff? you probably can.

     So when I recently found myself in severe respiratory distress, I was confident this was just another minor hitch.  After all, I am Superman, right?  Wrong!

     Those of you who have been in my shoes can attest to the fact that when you cannot breath and your heart is pounding like a drum, it is a pretty scary feeling.  I was in the hospital at the time and under the care of an excellent medical team but one part of my mind had me convinced that this would be my last hospital stay.  Didn't I have enough problems already?   How could I spend the rest of my life tied down to an oxygen tank?  Depression and a sense of panic rapidly set in.  I was thoroughly convinced that I was ready for a nursing home at best.

     However, with reassurance and support from my family, my doctor and good friends all over the country on WW, I soon found out that this need not be the end of the world.  Like the other bumps in life we endure, this just needed a little time for me to adjust.

     Should there be someone out there who is experiencing the same thing and has the same worries, let me describe my daily routine.

     I have two large liquid oxygen tanks (one in the living room and one in the bed room).  Since I alternate between them, each would last approximately 10 days.  I also have a portable canister, which can be filled from the large tanks and will last about 5 hours.  One of the problems in the beginning was getting used to toting this toy around, especially driving.  But with time and patience, this becomes routine (still not fun but routine).  I have sufficiently long tubing on my large tanks to allow me to move about my home with ease.  Living in a ranch style house makes this easier.  The oxygen is fed to my stoma via a trach mask.

     Those of you who know me understand that I am a strong advocate of HME use; however, at the present time, I no longer use one due to the mask.  I am able to do without the HME because the other piece of equipment I have is a large nebulizer unit which I integrate into my oxygen flow to provide a cool mist virtually directly into the stoma.  Whether it is the mist, the added oxygen or one of the changes that were made in my meds, I have virtually no coughing and my mucus production has never been this low since becoming a laryngectomee.  It seems that every cloud can have a silver lining.

     So the initial panic is over.  Life has generally returned to normal (with a few changes).  As I learned about being a laryngectomee, I now learn something new every day to make my life more 'normal'.  The one point we can all take away from my experience is that none of us are ever above panic or depression but with the support we have available to us, even the major changes in our lives need not be anything other than 'another bump in the road'.

Stan Mruk is an Independent Laryngectomee Consultant to Atos Medical


                          Dutch's Bits, Buts, & Bytes

(1)  What is a Spybot?

     A SPYBOT is a program that is downloaded to your PC (probably without your knowledge) that records where you go on the web and then reports that information back to a central repository.  It is primarily used to get a marketing profile on you that can be sold to someone for direct marketing.  Whether this is good or bad is up to you.  The problem I see is that a computer might have 50 different pieces of spyware reporting to 50 different locations taking a lot of the computer CPU capacity to do this.

     What I have been recommending is for people to download a nice freeware program called "Spybot Search and Destroy".  Go to yahoo or google and search for this and there are plenty of places to download it.  After installation, It takes about 10 minutes to run on your computer and that way you can at least see if you have any of this spyware and then you can decide what to do if anything about it.  It works really well and has received many good reviews.  (The main home page for this program is at http://spybot.eon.net.au )

     Many people who run this and remove the spyware claim that their computer runs much faster as a result of getting rid of the Spybot programs.  (Note: When I first ran "Spybot Search and Destroy" on MY PC, it found over 100 (yes, over one hundred) spybot-related files on my system... I was stunned!)

(2)  "Forwarding Emails"        How many times have you opened your computer's Mailbox only to discover several "forwarded" Emails from friends and even strangers, some interesting, most not, but almost always containing an endless listing of addressees and various headers that you must scroll through BEFORE you actually reach the "meat" of the Email ... the original TEXT?  This is irritating, to say the least.        While most of these "forwarded Emails" deserve nothing more than the exercise of your DELETE key, occasionally one finds a "pearl" that might be worth passing along to YOUR circle of Email pals.  But the question is ... should you just FORWARD it again, along with now MORE addressees and headers preceding the "meat"?  Or is there a better way?  The answer is ... YES, there is a better way ... in fact there are TWO better ways.        Way Number One:  Highlight the "meat" (the desired text) with your mouse and then hit REPLY.  The result of this action is a new Email form with the Subject block already filled in, addressed to the person who just sent you the forwarded Email, and containing a copy of the desired text and preceded by an annotation indicating who sent it to you, such as:  
" In a message dated 4/15/2004 7:14:55 PM Central Daylight Time, LLBoots@cs.com writes: "        You then go to the addressee block, erase the previous sender's Email address and replace it with the Email addresses of those to whom you wish to send this little "pearl".  Then hit SEND.        Way Number Two:  Highlight the "meat" (the desired text) with your mouse, then COPY the highlighted portion (right click on the mouse and select the COPY option).  Then, open a NEW Email form and PASTE the text into the Email (place the cursor where you wish the text to begin, then right click on the mouse and select the PASTE option).  Then give your Email a Subject and address it as you wish ... then hit SEND.  
     In both of these cases, you have sent your little "pearl" on to your Email pals in a clean and uncluttered manner ... that is, minus the hassle of them having to scroll through three feet of addressees and headers before getting to the actual message.  You will have done a good deed and the recipients will be grateful.   Hope this helps!
 

 



Register for IAL 2004 in Anaheim HERE



   Lary Laffers - Things a Stoma Might Say   


    "I hope that bee doesn't mistake my electrolarynx for a mating call!!"
Courtesy of Judy Greiwe, judygreiwe@comcast.net

   ListServ "Flame Warriors"   


                                                                                Terms of Importance
flame

1. n.   A hostile, often unprovoked, message directed at a participant of an internet discussion forum.  The content of the message typically disparages the intelligence, sanity, behavior,  knowledge, character, or ancestry of the recipient.
2. v.   The act of sending a hostile message on the internet.

flame warrior
1. n.   One who actively flames, or willingly participates in a flame war ... (Another Example Below) ...

Tireless Rebutter

For Tireless Rebutter there is no such thing as a trivial dispute. He regards
all challenges as if the barbarians were battering at the gates. His unflagging
tenacity in making his points numbs and eventually wears down the opposition.
Confident that his arguments are sound, Tireless Rebutter can't understand
why he is universally loathed.

Above courtesy of Mike Reed
See more of his work at: http://www.winternet.com/~mikelr/flame1.html 
 


   Welcome To Our New Members:

I would like to welcome all new laryngectomees, caregivers and professionals to WebWhispers! There is much information to be gained from the site and from suggestions submitted by our members on the Email lists.  If you have any questions or constructive criticism please contact Pat or Dutch at Editor@WebWhispers.org.

Take care and stay well!
Murray Allan, WW President

     We welcome the 40 new members who joined us during April 2004:

Larry Barkley
Carlinville, IL
Bonnie Barry
Pawtucket, RI
Patrice Bloom
San Diego, CA
Marshall Brown
Seattle, WA
Joan Burnside
College Station, TX
Danny Chapman
Scott Depot, WV
Yvonne Chapman
Tulsa, OK
John Colt
Kansas City, MO
Jennifer Conway - Caregiver
Cave Spring, GA
Ruby Nell Davis
Elgin, TX
Shan Day - Respiratory Therapist
Houston, TX
Darrel Dore'
Washington, DC
Joan Dubin - Caregiver
Highland Park, IL
Leo Emerson
Seattle, WA
Darlene Foley - Vendor
Rolling Meadows, IL
Patricia Glassop - Caregiver
Elliott Heads, Bundaberg, Australia
Melanie Glisson - Caregiver
Bainbridge, CA
Scott Hardy
Marathon, FL
Earthel (Doc) Holiday
Bronx, NY
Bob Holt
Mineral Wells, TX
Margaret Howes - Caregiver
Chester, Nova Scotia, Canada
Bob Inderhees
Kokomo, IN
Kathy Jackson - Caregiver
Powell, TN
Lowell Jamison
Grand Junction, CO
Joel Just - Vendor
Beaverton, OR
Jack Kidwell
Normal, IL
Charles Kinnear
Yucaipa, CA
Bob Meade
Panama City, FL
Janice & Debbie Mendello - Caregivers
Middletown, CT
Mary Neis - Caregiver
Lake Villa, IL
Cara Padin - SLP
Strongsville, OH
David Palmer
Raleigh, NC
Melony Phillips - Caregiver
Gilmer, TX
Ronald Ray
Chicago, IL
Allan Smith
Tamarac, FL
Gregory Smith
Windsor, California
Pamela Stephan - Caregiver
Houghton Lake, MI
Annett Stone - Caregiver
Bella Vista, AR
Joy Teames - Caregiver
Royse City, TX
Michelle Wagner - Caregiver
Bowie, MD
 



 
WebWhispers is an Internet-based laryngectomee support group.
  It is a member of the International Association of Laryngectomees.        
  The current officers are:
  Murray Allan..............................President
  Pat Sanders............V.P.-Web Information
  Terry Duga.........V.P.-Finance and Admin.
  Libby Fitzgerald.....V.P.-Member Services
  Dutch Helms...........................Webmaster
      

  WebWhispers welcomes all those diagnosed with cancer of the
  larynx or who have lost their voices for other reasons, their
  caregivers, friends and medical personnel.  For complete information
  on membership or for questions about this publication, contact
  Dutch Helms at: webmaster@webwhispers.org   

 

Disclaimer:
The information offered via the WebWhispers Nu-Voice Club and in
http://www.webwhispers.org 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.



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.


  ? 2004 WebWhispers
Reprinting/Copying Instructions
can be found on our
WotW/Journal Page.