Internet Laryngectomee Support
April 2002

Janet Ramakers - My Story
by Janet Ramakers

    My story is a simple one.  It all started with a slight cold that led to a sore throat and ended with a total laryngectomy.  It was in the spring of 1993 when fate tapped me on the shoulder.  As I was rolled out of the operating room, life would never be the same again.

    My doctor kept telling me I would learn to talk again and resume a normal existence.  I remember thinking this man must be on another planet because I could never again face the world sounding so strange.  I had been made over and the image I saw in the mirror was not what I had in mind.  I asked myself a dozen times how could this happen to me.  I was only 46 and did not smoke.  The doctor shared my confusion and assured me that I did not fit the profile for this disease.  A small consolation for the path I was to follow for the rest of my life.

    In my case the cancer had spread extensively and over 60 lymph nodes tested positive.  Radical neck surgery was performed.  Radiation with a side order of chemotherapy was the follow up treatment administered simultaneously.  At that point I prayed that the good Lord would put me out of my misery and take me to the great world beyond.  I had my bags packed and I was ready to accept the fact that my life was over.  I greeted each day with surprise that I had made it through another day.  As a businesswoman, I always believed in getting things done as quickly as possible.  I could not understand what was taking so long.  Dying was getting on my nerves!  The treatments continued for six months, and to this day I am not sure how I survived them.  It is now nine years later.  Amazing how time flies when you are preoccupied.

    In 1994, after a year of horror, my doctor suggested that I go to a convention called the International Association of Laryngectomees.  What was that all about?  How was that going to help me?  He kept after me and since I had nothing better to do, I consented to go.  It was held in Cherry Hill, New Jersey, so the trip from Long Island, New York, was only a few hours' drive.  I had no expectations and was almost resentful of the whole idea.  I was an intelligent educated woman who did not need to be rehabilitated.  I had lost my voice; not my mind.  I was soon to discover how wrong I was.

    The convention was broken up into different support groups and I met so many wonderful people.  I was surprised at how many had gone back to work in various careers.  Others had gone out into the school system to stress the dangers of smoking to youngsters, and some became motivational speakers.  They all had the attitude that nothing was impossible.  I picked up many helpful hints that only a fellow laryngectomee would know and left the convention with the conviction that I could accomplish whatever I wanted.  As the final days of the convention approached, I sat on my bed and cried.  I did not want it to end.  I could not believe that a disease that threatened my life was responsible for so much good will.  I was walking on air as I got in my car to go home.

    With a renewed lease on life, I called my employer and said I was ready to come back to work.  As a financial officer, I spend a great deal of time on the phone, but I was determined not to let my "new voice" stop me.  As I approached the office on my first day on the job, I was terrified.  What was I thinking?  I must be out of my mind. No one would come to me for advice when they heard what I sounded like.  Then I remembered the folks at the convention.  They seemed to be whispering in my ear to take the word "can't" and throw it away.  They gave me the courage to open the door, hold my head up high, and bring my special talent back to the work place.

    As I look back on the last nine years, I am sorry that this happened.  I still wish that I had escaped this fate, but it was not to be.  I will always be grateful to the IAL for all that it has done for me.  All the courageous people I have met.  I have been touched in so many ways it is hard to describe.  I know now that if my doctor were to tell me he could give me back my voice but he would have to take away all that I have gained, I would tell him I was not interested.  The IAL has taught me that I am still me no matter what I sound like or what method of speech I choose.  As long as I can communicate, that's all that counts.

    For all of you who ask why should I waste my time going to the IAL convention, I can sum that up in one word-----LOVE!!

(Note: Janet was elected to a two year term on the IAL Board of Directors last year. She can be reached at Jramak@aol.com)

Bob Mehrman - "Dragon Slayer"

    The American Cancer Society's Saint George National Award is their most prestigious, and this year Bob Mehrman was among those few Americans who received it.  The award is named for fabled dragon-slayer, St. George.  Cancer is often referred to as "the dragon." Bob's award recognizes his work in Massachusetts and nationwide to warn young people about the dangers of tobacco use.  He has been an ACS volunteer for a dozen years.

    Bob was a radio and television broadcaster in his native New England for three decades before becoming a laryngectomee in 1990.  He served as the Executive Director of the Massachusetts Broadcasters Association from 1987 to 1993.  Many will recall that Bob appeared in a television ad paid for by the American Legacy Foundation which premiered during the 2001 Superbowl.  It depicted him in a hospital bed, and the March 2001 WWJ carried an article and photos.  (See http://webwhispers.org/news/mar2001.htm

    Bob currently works full time with the Massachusetts Tobacco Control Program.  Massachusetts had been among the few States which devoted all of its share of the $208 billion dollar tobacco company settlement money towards tobacco education.  But as has happened elsewhere, the State government (in this case the governor) has attempting to divert this money and cigarette tax revenues for other purposes.  What has been an effective model tobacco education program was challenged since, as with many other States, more powerful lobbies than those concerned with cancer prevention vie for those dollars.  In Virginia, for example, tobacco money was diverted to give tobacco farmers who had lost income as a result of reduced sales.

    Bob has shared his personal story with more than 200,000 children and teens, and he continues to speak to schools and civic organizations at least once a week.  Bob collects statistics from across the country on the number of tobacco education talks given by laryngectomees, the age of the group spoken to, date of presentation, and the size of the group.  Individuals willing to provide this information can contact Bob at his e-mail address below.  The data can be helpful in demonstrating the role laryngectomees play in tobacco use prevention.

    Bob is president of the Boston Cured Cancer Club for Laryngectomees.  It is among the oldest in the nation, and was a founding club of the International Association of Laryngectomees at its birth in 1952.  He is also a member of the IAL Board of Directors and is chair of the Tobacco Education Committee.  Materials he and his Tobacco Control Program have developed are in use throughout the country by those interested in telling the story to children of tobacco and cancer.

Bob can be reached at bmehrman@comcast.net.

The Adventures of Polyp Man - Focus on Colon Cancer

    Have you seen an ad on TV featuring Polyp Man? Polyp Man is no superhero.  Instead he is the villain in a number of public service television ads sponsored by the American Cancer Society and the Advertising Council.

    One of the ads features Polyp Man raiding the refrigerator and snacking on high fat and junk foods.  Two doctors show up, chase him down and drag him away.

    As you probably already know, polyps are tiny bump shaped irregularities which appear over time in the colon, or large intestine.  Left untreated, they can lead to colon cancer.  Recent research has indicated that 75% of colon cancers originate as polyps.

    Unless colon cancer runs in the family, the usual method of detection is fecal occult blood testing beginning at age 50.  The test, which is usually done at home once per year with a kit your general MD provides, checks for blood in excrement.  If it is detected, further testing is done.

    A second screening method is a flexible “sigmoidosocopy,” typically given every five years to those over 50.  The sigmoidoscope is a medical instrument which is frequently used by the family physician in his/her office.  It visually examines the lower portion of the bowel.  Prior to the procedure the digestive system is emptied using a prescribed medication.

    Another diagnostic procedure is the use of a barium enema which allows the colon to be examined using equipment which provides a visual image which can also show polyps or other problems.

    Many MDs also recommend that a “colonoscopy” be performed every 10 years after the age of 50, or more often if there is a personal or family history of polyps.  This is similar to the sigmoidoscopy, but is done in the hospital.  It examines the entire large intestine rather than just the lower portion.

    A recent study reported in the Journal of the American Medical Association concluded that the colonoscopy performed at age 50 and 60 is the most effective at detection and cost effective means for detecting colon cancer, although patients are more likely to comply with the recommendations for fecal occult blood test or sigmoidosopic exam.

    If you are over 50 and have not been screened for colon cancer, ask your MD and help to ban Polyp Man.
 


Prolonging the Life of the TEP Prosthesis - Revisited

     If you use the kind of TEP prostheses you change yourself, they typically cost around $40 each and up, depending on the brand.  At that price, we want to keep them working for as long as possible.  The primary cause of prosthesis failure and having to replace them is the growth of yeast (candida) on and around the valve.  When the valve no longer closes because of the yeast build up, liquids can leak into the trachea and cause coughing and even pneumonia.

    If a leak in the prosthesis cannot be fixed by cleaning, it signals the need for a change to a new one.  In addition to controlling the formation of yeast by frequent cleaning, you can also prolong the life of the prosthesis by buying them in pairs and rotating one with another.  While wearing one, the other soaks in peroxide.

     There is some disagreement about how long to wear a prosthesis before changing it.  Some people prefer to remove and clean it every few days (or even daily), while others may keep it in a week or even much longer.  But in either case the prosthesis is still cleaned while it is being worn.

    One helpful tool to use to keep the prothesis clean while it is in place is to use a flushing pipet.  Inexpensive ones are available from laryngectomee and medical suppliers.  More expensive, but more durable and effective ones, are also available (see photo of ATOS pipet).  WebWhispers members have also described how an inexpensive pipet can be improved by cutting the tip from it and pushing it on to the end of a syringe.  (see "If There Is a Leak," http://webwhispers.org/pages/hints/tepspeech.htm). 

    Almost any syringe will work including those sold or given away for dispensing medicine orally.  The 20 cc size is a particularly good one, while others think the 10 cc size is adequate.  This provides more water under greater pressure to squirt through the prosthesis and flush out food particles and liquids which contribute to yeast built up.  The pipet/syringe is typically used a couple of times a day, after meals, or anytime there is a leakage problem or mucous buildup.

     Another useful tool to help keep the prosthesis clean is a brush.  Several laryngectomee suppliers carry them.  Some laryngectomees also use the tiny two inch long brush you can usually find anywhere toothbrushes are sold.  They come two or three to a package.  The intended purpose of the brush is to clean between the teeth, but they are also a good size to use in cleaning out mucous from the entrance to the prosthesis.  Those who wear the 20 French diameter prosthesis may prefer the brush with the tapered bristles which resemble a Christmas tree, while those who wear the smaller diameter may prefer the cylinder shaped one.  Using this brush does carry a risk that the tip could break off, however, and drop down the trachea.  The commercially available brushes avoid this small, but real, risk.

     Care should be taken not to insert the brush (or anything else) all the way through the prosthesis.  There are two reasons for this.  One is to avoid damaging the prosthesis valve.  The second reason is that the normal position of the esophagus is closed unless you are swallowing or speaking.  If something sharp penetrates through the prosthesis, it can scratch or puncture the back wall of the esophagus opposite the prosthesis.  This could cause potentially serious infection and hospitalization.

     The little brush is a better alternative to the pipe cleaner some larys use to clean the prosthesis since it is more easily kept from penetrating too far into the prosthesis, it should not shed any fibers, and it can be soaked in peroxide to be used almost indefinitely.  But whatever our prosthesis cleaning methods are, it should always be done gently and carefully.

(A version of this article originally appeared in New Voices, the newsletter of the Montgomery County (AL) Laryngectomee Association).

Many in U.S. Buying Prescription Medicines from Canada

    Since the prices are significantly lower, many in the U.S. who live close to the border are simply traveling into Canada to fill prescriptions.  Others are using the Internet, fax, and phone to take advantage of the bargain prices.

    While it is technically illegal to import prescription medications, it is something which is being ignored.  One Canadian company which has been particularly successful in cashing in on business from the U.S. is Canadian Meds USA. Those interested can contact the company at: http://canadianmedsusa.com  Toll-free: 1-877-933-0505
 


Bob Underhill Honored

    WW member Bob Underhill was recently recognized by the City of Dover, New Hampshire Police Department for over 8 years of service with the Dover Coalition for Youth and Dover Youth-to-Youth programs.  Bob has spoken to more than 130 classes about the hazards of smoking including every 7th grade class.  Bob was acknowledged for his role in helping Dover to achieve a smoking rate among its young people which is much lower than the state and national averages.  Congratulations Bob.

    Bob can be reached at guru@worldpath.net.

That Marvelous Tomato

    According to a recent study, men who eat just two tomato based meals per week show a 36% decrease in prostate cancer.   Of course, most men already knew spaghetti and pizza were good for them.  Now they just have more excuses to eat them.

Lary Laughs


Welcome New Members 


    We welcome the 23 new members who joined us during March 2002:
 

Marcia Bergman
Wilmette, IL
bergmanm@nttc.org
Kevin Berry
Toronto, Ont., Canada
kevinberry592@netscape.net
Dan Clark
Onlasaka, WA
middlefork@tds.net
Philip & Carol Esch
Milan, MI
caesch@tir.com
Connie Ferri - SLP
Hamilton, Ont. Canada
cferri@stjosham.on.ca
Mickey Godwin
Bridge City, TX
mick@exp.net
Laura Hastings
Albuquerque, NM
  timhastings@email.msn.com   
Georgia Johnson - SLP
Big Foot, TX
  georgia.johnson@harlandale.k12.tx.us   
Richard Leskovec
Pepper Pike, OH
richardles@yahoo.com
Charles Lindvall
Litchfield, MN
chucklor@hutchtel.net
Jerald Lofton
Calhoun City, MS
j_jlofton@yahoo.com
Darwin Lowe
Sarasota, FL
drlowe2@comcast.net
Edward Maier
Sacramento, CA
Edsaccal@cs.com
Denise Manios
Northridge, CA
Dmanios91345@aol.com
Janet Mascitelli
Carthage, NC
  Mascitelli9@netscape.net   
Lisa Patricia - Caregiver
Corona, CA
LisaRe@aol.com
Ann Robinson - SLP
Broomall, PA
Annspeechpathco@aol.com
Robert Runnels
Spindale, NC
bobrun7@hotmail.com
Reagan Simpson - SLP
Houston, TX
rsimpson2@houston.rr.com
Leland Smith
Sulphur Springs, IN
leland.smith@insightbb.com
Jeanne Tibbits
Siloam Springs, AR
jtibbits@cox-internet.com
Larry White
Omaha, NE
taztaz@cox.net
Richard White
San Diego, CA
rwhite4@san.rr.com

 


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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