Title/Author Topic Article Type
Bob Kanjian Back In Game Experiences
Hotlanta IAL-AM VI News & Events
Better Sleeping Hints Sleep Advice
Cancer Drug Paclitaxel Medical
Teen Smoking Movies Tobacco
Throat Cancer Asbestos Research
Fund Raiser WW Mouse Pad News & Events
GERD Baclofen Research
Welcome New Members News & Events

 

 


Internet Laryngectomee Support
July 2003

 

Bob Kanjian - Back in the Game

     Bob Kanjian had been a detective with the Washington, D.C. Police Department.  He retired in 1986 and took a part-time job as a District Court Commissioner in neighboring Maryland.  He also continued in a passion he had indulged since 1978-- being a soccer referee.  Each year he refereed the spring and fall soccer sessions in the D.C. area in games ranging from junior high school to the professional level.

     Bob wrote, "In 1996, my wife Carol and I became snowbirds and retired to Florida.  I continued to travel north for the spring and fall soccer seasons.  In 1999, my wife started bugging me about my hoarse voice.  I shrugged it off, blaming the poor air quality in the area and 'allergies.'  In 2000, my friends started asking me about my raspy voice.  I still maintained it was an allergy caused by the air up north.  When my daughter got married in November of 2000, she pleaded with me to go and have my 'allergies' checked out BEFORE she got back from her three week honeymoon."

     Bob's new primary care doctor took a look and sent him to an ENT who scheduled a biopsy.  The diagnosis was positive for cancer of the vocal cords and he underwent 33 radiation treatments.  "My prognosis at that time was that I would fully recover with a 90% cure rate.  I returned every month to my ENT for a checkup and was looking forward to my one year anniversary so that I could then see him every TWO months.  Not to happen!  At the 11 month checkup he told me that the LEFT vocal cord looked inflamed."

     Another biopsy and MRI (Magnetic Resonance Image) and he was told that he needed to do a vertical hemi-laryngectomy surgery*.  A second opinion was sought from a doctor at famous Johns Hopkins Hospital in Baltimore, Maryland, and the decision was made for a total laryngectomy.  Along with the larynx, 100 lymph nodes were removed, all of which were negative for cancer.  Along with the laryngectomy, his doctor did the TEP (Tracheo-Esophageal Puncture).  The puncture initially served as the route for his feeding tube before his prosthesis was installed two weeks later.  He spoke immediately.

      But along with the good news of the success of his surgery and TEP, he was told some very bad news.  He was told that he would never be able to blow a whistle with his mouth.  "This was a devastating blow to me as I had envisioned returning to soccer as soon as I had healed.  I was NOT ready to hang up my cleats!"  Close friends and family members began to work on ideas for an alternative whistle. 

     "My daughter discovered a 2 1/2 ounce can of compressed air small enough to fit nicely in the palm of my hand.  Other friends tried many prototypes.  My friend, Jack Whyte, was able to find a way to attach a whistle to the top of the air can my daughter had found.  This made it feasible to use in a game situation.  NOW, I was ready to return to the soccer field.  Just before returning to Maryland, I was practicing with the "Whyte" can whistle and it wasn't working very well.  In frustration, I tried to blow a whistle with my mouth.  I was able to get a good sound.  I continued to practice and was able to blow loud enough for me to be able to use it in a game situation.  I decided to scour the Internet for 'pea whistles' that purported to be VERY loud.  I can now blow the whistle adequately enough to be able to referee a game by occluding the cassette in my stoma.  I still keep a more perfected "Whyte" whistle in my pocket in case my seal should ever fail me (which is a constant possibility).  During pre-game meetings, I use my FreeHands and then, just before the game begins, I switch to my Hi-Flow cassette."  (The Hi-Flow filter cassette is from ATOS.)

 

     "My goal as a 'lary' is to return to my former life as nearly as possible.  Soccer was a very large part of my life before my surgery.  Returning to the field has allowed me to continue my passion.  Other than the players remarking that I have a raspy voice, or a bad case of laryngitis, they don't know what I've been through.  Since I wear a dickey over my stoma, they don't know I'm a laryngectomee, nor does it matter.  It hasn't affected my quality of refereeing."

     Bob can be reached at Rkanjian@webtv.net

*Vertical hemilaryngectomy is a form of surgery used for early stage cancers in the glottic (larynx) region.  It is designed to preserve as much of the function of the larynx as possible.

(Note: although it may not be suitable for routine use outdoors since it requires access to the stoma, directions for modifying a standard whistle for laryngectomee use by combining it with a baby bottle nipple can be seen in the WWJ Hints section here: http://www.webwhispers.org/pages/hints/activities.htm

Hotlanta!

     A more comprehensive series of articles (with lots of photos) will have to wait until next month, but the 52nd Annual Meeting and 43rd Voice Institute of the International Association of Laryngectomees convened in Atlanta, Georgia on June 26-28th, with the Voice Institute beginning two days earlier.  The total attendance was around 300, and included a possibly record-breaking attendance at the Voice Institute of close to 90 speech/language pathologists, laryngectomee trainees, laryngectomee VIPs, and graduate students.  A number of WebWhispers members were in the "graduating" class of the Voice Institute.

     A fabulous WebWhispers reception (hosted by Bruce Medical) and dinner was held on Friday night with a terrific menu featuring southern cuisine.  Mary Jane Renner received the Casey-Cooper Award named after our first two WW presidents Carter Cooper and Joe Casey.

     The August WWJ will feature articles on a number of the more important presentations given in Atlanta, along with  photo collages and a special club activity idea.
    
ZZZZZZZZZZZZZ - Sleep

    According to the experts, most of us need less sleep as we age.  But in addition to a decreasing amount of sleep, the sleep experience of older individuals can also become less predictable and restful than when we are younger. 

     Additionally, since we laryngectomees breath only through our stomas, our sleep can be further interrupted by anything which blocks the incoming air such as accumulated mucus or being in a sleeping position which narrows the stoma.  Unlike our pre-laryngectomy lives when we could increase the air coming in via our noses by breathing through our mouths, any blockage of air at the stoma level will cause us to awaken enough to adjust the sleeping position to increase air flow, or come all of the way out of sleep.  Certainly another age-related issue for many older individuals is the need to arise during the night to visit the bathroom.
 

 

Getting Enough Sleep?

    How much sleep do we need?  If you can answer "no" to all of these questions you are probably getting enough sleep.

- Do you sleep longer on the weekends, or any time during the week so as to "catch up on your sleep?"

- Do you feel drowsy or nod off at any point during the day?

- Do you fall asleep within 5 minutes or less?  (Those who are getting enough sleep tend to take from 10-20 minutes).

     According to the experts, we need four or five complete sleep cycles each night.  A sleep cycle consists of deep sleep, or NRS (Non-REM Sleep), and REM (Rapid Eye Movement) sleep.

 

 

Stages of Sleep

Stage 1 is REM sleep (also called "Delta" sleep).  Your eyes move back and forth behind your eyelids.  This occurs after about 90-100 minutes after falling asleep.  The blood pressure rises and heart rate and respiration speeds up and becomes uneven.  Your voluntary muscles are paralyzed.  This stage is considered the most restorative part of sleep.  Our most vivid and memorable dreams occur during this stage.  The percentage of REM sleep each night declines with age.
 
Stage 2 is "light" sleep.  It is characterized by muscle relaxation, slowed heart rate, and no eye movement.  The body is preparing to enter into deep sleep.
 
Stage 3 and 4: Also characterized by NREM, these two stages involves periods of deep sleep with Stage 4 being more intense than Stage 3.   Your body temperature drops and muscles relax.  You are completely asleep. 
 
These stages repeat themselves throughout the night.

    Instead of the four stages described above some researchers divide sleep into five or even six stages including the falling asleep and waking stages.

Hints for Better Sleeping

     There are a number of things which researchers have found help maintain a good sleeping pattern.  Some of these include:

- Keep regular hours by going to bed and waking up around the same time.  This is necessary because we have a built in body clock called "circadian rhythm" which is controlled by hypothalamus at the base of the brain.  It governs the body's daily alteration between sleep and being awake.  If we significantly change our sleeping patterns such as gong to bed early one night and late the next our body clock becomes "confused."  One suggestion for resetting" the body clock is to go out early in the morning and stand facing the sun for 15 minutes.  The presence or absence of light works as a trigger to inform the mind whether it should be awake or asleep.

- Develop a "sleep ritual" by doing the same things each night.  This cues your body that it's time to settle down for sleep.  One expert suggests that if you can't fall asleep within 20 minutes or so, get up and do something boring until you feel sleepy.  And don't expose yourself to bright light at this time since this tells your body that it is time to wake up.

- Exercise regularly, but not too close to bedtime.  Exercise relieves tension.  Some experts say to exercise no closer to bedtime than four hours.

- Unwind early by dealing with worries and distractions several hours before bedtime.  Some find that reading a light novel or listening to soothing music before bed can help them fall asleep.  Rather than go over the things you need to do tomorrow in your mind, write them down.

- Make sleep a priority even when you're tempted to stay up late.

- Sleep comfortably.  Make sure you have a supportive mattress with adequate foundation.   Some experts say that 75% of a bed's supportive characteristics are degraded within ten years so buying a new bed may improve sleep.  Other authorities suggest that you should only use your bed for sleeping and sex and not, for example, watching television or doing work.  This helps your body associate being in bed with just sleeping.

- Use a cervical (neck), or other supportive pillow.

- Create a cool, quiet, dark and restful sleep environment.  Light and sound control are particularly important.  For some, wearing earplugs and a mask help.  Research says that most people sleep better in a cool room than a warm one.

- Avoid drinking alcohol shortly before bedtime.  Alcohol disrupts and causes fragmented sleep.

- Cut down on stimulants such as caffeine during the evening, and do not eat close to bedtime.  The exception would be if you stomach is empty.  This can produce sleep problems and a light snack may be called for.

- Have sex.  Research says that it produces the natural painkiller endorphin, and aids in relaxation.

To Nap or Not to Nap

     The experts disagree about whether naps are necessary or desirable.  Some say they are a bad idea and always interfere with night time sleeping.  But those who support them typically recommend that they should be for less than an hour (20 minutes may be all you really need), and should come before 3 P.M. so they do not interfere with night time sleeping.

(Information for this article came from the British Broadcasting Corporation, Chiropractic Wellness & Fitness Magazine, and Stanford University.)

Cancer drug Paclitaxel Enhances Chemotherapy

     The management of patients which locally advanced head and neck cancers may be transformed by studies which have shown that adding the drug Paclitaxel to the standard chemotherapy completely wipes out tumors in about 1/3 of patients.  Additionally, patients given the drug combination are more likely to keep the ability to speak and swallow.

     The other cancer drugs are Cisplatin and 5-fluroucil (5-FU), and the researchers theorized that the addition of the Paclitaxen would further shrink the tumors.  The use of the three drugs together produced a 32% total remission compared to a 13% remission rate with the standard chemotherapy.  The larynx, pharynx and tongue were preserved in 88% of the patients compared to 75% with the traditional chemotherapy using the two drugs.
  
     "This is a very important study that will very likely change the way head and neck patients are managed," said Robert Mayer, MD, director of the Center for Gastrointestinal Oncology at Dana-Farber Cancer Institute in Boston, Massachusetts.

     These research results were presented at the annual meeting of the American Society of Clinical Oncology.

Teen Smoking Linked to Movies

     Are teenagers more likely to start smoking if they see movies whose stars smoke?  The answer is “yes” according to the results of research published recently in the prestigious British medical journal, the Lancet.  Teens who watched the most movies with smoking were almost three times more likely to start smoking than those who watched the fewest number of movies with smoking. 

     “The study provides the strongest evidence to date that smoking in movies encourages adolescent to start smoking,” said the lead author.

Asbestos and throat cancer

    The experts tell us that cancer of the larynx is linked to smoking, alcohol consumption and exposure to a number of chemicals including Agent Orange, but is there also a link to asbestos?

     An article in June issue of Clinical Otolaryngology reviewed the available research.  Exposure to asbestos is a known cause of cancer.  But whether it is involved in larynx cancer has been debated for at least three decades.

     Asbestos is a naturally occurring mineral which continues to be mined in Australia, Canada, Russia and South Africa.  Asbestos has most commonly been used as insulation material and a fire retardant.  Asbestos is only dangerous when it becomes airborne and is inhaled.  Significant exposure causes scarring of the lung called Asbestosis.  This can lead to cancer of the lining of the lungs or to malignant tumors of the bronchia.  
     The authors of the study conclude that the weight of the evidence from the studies does not support a direct link between asbestos exposure and the development of larynx cancer.  This is not the final answer on this question, and further research may shed more light on the issue.  The incidence of asbestos-linked cancer is increasing, particularly in European countries.

(Information for this article came from Clinical Otolaryngology and the Asbestos Institute.)

New WebWhispers Item Available - the WW Mouse Pad

     WebWhispers members who attended Atlanta IAL got a nice surprise when they visited the WW table.  They were able to pick up a free WW logo mouse pad, courtesy of Jim Lauder.  With the additional donation of 400 of these mouse pads, we are now able to offer them for sale at $5.00 each.  The proceeds will go into a fund to offer financial help for some members to attend the IAL.  We are pleased to have permission to call this fund "The Edmund Lauder Support Fund" and details will be forthcoming at a later date.  Checks for these mouse pads should be made payable to WebWhispers and sent to:

 Terry Duga, Treasurer
 6115 North Park Ave.
Indianapolis, IN 46220
   

     Thanks to Jim Lauder and all of the vendors who contribute to the WebWhispers' cause.

Drug Shows Promise for Treating GERD

    A drug, Baclofen, which had previously been used for another purpose, has been added to those used in the treatment of GERD, according to Laurie Barclay, MD. 

     Patients treated with Baclofen for four weeks showed significant improvement in the decreased number of episodes of GERD as well as improved levels of stomach acidity.  Baclofen is a prescription drug and those interested should see their doctors.

 

 


 

(Submitted by George Cocking who reports that the poem is read at each meeting of his
local support group where members are learning traditional esophageal speech).


Welcome New Members 


     We welcome the 33 new members who joined us during June 2003:

 

 

William Adams
Detroit, MI
AdamsWJ@aol.com
Gurmit K. Bachher, PhD - SLP
Mumbai, India
gurmitlatika@rediffmail.com
Rosemary Bacino - Caregiver
St. Anne, IL
rodi@keynet.net
Laura Battiata - SLP
Kensington, MD (WRAMC)
 Laura.Battiata@na.amedd.army.mil  
Marusya Bociurkiw - Caregiver
Vancouver, BC, Canada
mbociurk@sfu.ca
James Bolton
Baton Rouge, LA
JGBolton@cox.net
Beverly Brown
Spring Valley, CA
wm.brown@cox.net
Lynn Coppedge - SLP
Arden, NC
coppedges@hotmail.com
Stephen Cox
Bethany, OK
scox295429@aol.com
Rene Cuisia
Manila, Philippines
rvlc@pacific.net.ph
Shawn Davis - Vendor (Romet)
Monmouth Junction, NJ
ShawnDavis111@cs.com
Gene Dietrich
Houston, TX
flyer_59@hotmail.com
Francis Emele
Norristown, PA
FEmele4603@aol.com
Gary D. Ford
Lancaster, MA
gjford@attbi.com
Kelli Hancock - SLP
Brisbane, Australia
 Kelli_Hancock@health.qld.gov.au  
Joel Jackson
Panama City, FL
jenjak@knology.net
Gerald King
Lowell, AR
DrannyK@aol.com
Juanita Larracey
Machias, ME
delshayusa@prexar.com
Roy Lewis
Cannon Hill, Qnsld, Australia
Welford01@optusnet.com.au
Paul Markey
Sun City, AZ
pryekram@juno.com
James Meloy
Tacoma, WA
jfmeloy@harbornet.com
Allegra Nasr - SLP Grad Student
UNC, Greensboro, NC
aana@uncg.edu
Kathy Rayca - SLP
Philadelphia, PA
rkrayca@yahoo.com
Emer L. Rojas
Quezon City, Philippines
pres@nsclub.net
Bill Romanello
Dania Beach, FL
willor@bellsouth.net
Michael Sanchez
Sugar Hill, GA
msanc@aol.com
Joseph Sebok
Westland, MI
Janet@sebok.net
Russell Simpson
Coral Gables, FL
RGS2BFS@aol.com
John Thomson
West Valley City, UT
jsthomson1@msn.com
Roland Tomas
Quezon City, Philippines
rei8@yahoo.com
Cmdr. Shamu Varma (Ret.)
New Delhi, India
shamuv@vsnl.com
Julia Weinsoft - SLP
Los Angeles, CA
  julia.weinsoft@tenethealth.com   
Jerry & Jan Wilt
Ingram, TX
jwilt@omniglobal.net

 

 

 


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.


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