Internet Laryngectomee Support
November 2001

This Lary is Also a Preacher
by Tom Holcomb 

    
(Editor's Note: For whom would becoming a laryngectomee be the worst thing which could befall them in terms of carrying on with their previous lives?   Are there any occupations people cannot perform after becoming laryngectomees?  Some of us have asked these kinds of questions, and last month we profiled WW member William O. Wilham, who continued his full time ministry after becoming a laryngectomee.  This month we profile another WW member who is a minister, Tom Holcomb).

    Hi, Tom Holcomb here.  I was born in 1927 in Woodson County, Texas.  My people worked building roads for Brown and Root, so we moved all over the state.  My father died in 1937 and I began to live with my grandmother in Fort Worth.  The next year we moved to Bryan, Texas, and there I finished my public school education and then entered Texas A. & M. University.  I graduated in 1949 and began seminary at Southern Methodist University that fall.  I received a license to preach in the Methodist Church in 1947, and got my first charge, Reagan and Bremond, in January 1949 while still at A. & M. 

    My wife and I married in February 1951 when we were both at SMU.  We have two daughters and seven grandchildren.  Our son died in 1973.  We served the United Methodist Church until 1990 when we retired and then went to England to serve with the Methodist Church there for two years.  That was in 1992 and I think retirement is the second best thing God ever made.  It was while we were there in England that my cancer was discovered.

    But I do still keep my hand in, preaching when asked, doing weddings and funerals and baptisms.  It took a while, but now I can sit in the pew and enjoy worshipping with the congregation.  Preachers don't get to worship regularly because they are always so busy leading others in worship.  It is a great life.  We attend worship every week, Sunday School (which I had not done since 1949 except for those occasions when I was teaching a special class or something), usher once a month and both of us play in the hand bell choir. 

    By the way, I was a volunteer chaplain.  No pay except for the gratitude of folks of all faiths, and some with none at all.  My jobs are now volunteer.  I am a chaplain with our local hospice organization, continue to play the hand bells at church, usher once a month, preach when forced to do so, and keep up with my wife and family as best I can.  I am in good health and enjoy gardening, golf, and surfing the web.  We are retired and loving it.

    Tom and his wife Florence live in Huntsville, Texas, and he can be reached at tholcomb@totalzone.com 

Has Becoming a Lary Made you a Better Person? (Part 1)

    This past June a question was put to the members in an e-mail about what the overall impact of becoming a laryngectomee had been for them.  It read "A friend of mine said that they thought that becoming a lary had made them a better person.  How about you?  Better, or worse?"  Here is part one of the answers those who responded gave:

    I think I'm a better person - the THINGS that mattered before this thing hit - aren't that important anymore.  Bigger, better, shinier, more expensive, newer; nah ain't much anymore.  Family, friends, pets, health - that is what I care about.  The one thing that I notice now is that I listen more and am not as quick to criticize as I once was.  I'm still no Boy Scout, but definitely better.
(Randy Lemster)

    I don't see any real change, except that it's more difficult to communicate.  Also, eating is much more time consuming and not as enjoyable as it was.
(Ralph Freeman)

    I would say it made me a better person.  I started helping people with this problem.  Worked with the ACS for about seven years.  Would not have done that if I had not been a Laryngectomee.  So yes, a better person.
(Forrest Burnette)


    I think better, but one thing I noticed is I get p_____ off real fast now.  Do not have the patience that I used to.
(Roy Boyd)

    I can honestly say that I am not the same person now that I was before my laryngectomy.  I thought I was an all right feller then, or at least I tried to be.  Cancer has a way of changing your perspective on things.  Friends are definitely more important now.  If it had not been for my friends I would have never made it this far.  I feel like I have been kind of torn apart and am having to put myself back together, and someone stole the instruction book.  I make mistakes (a lot), but have found the grace to forgive myself when I do, and hope others do too.  I have found out that I can be loved even after all I have been through.  I haven't had a very good opinion of myself at times, but I have found a family here who accepts me in spite of my missing parts and my faults.  So in spite of the mountains there have been, things are better and I am getting better.  Maybe, just maybe, before I am called to the other side, I can honestly say that I am a much better person than I ever thought I could be.
(Gary Hurst)

    I'm not sure. Tend towards not so better. Give me a chance, I might get better.
(Judy Gerken)

    I have to say that being a lary is not easy.  Nor is it comfortable.  Questions about whether we are better persons for having had cancer and surviving are not limited to larys.  What about colon cancer survivors, the breast cancer survivors, the prostate cancer survivors?  I do not believe that we have an exclusive on surviving or dealing with the accommodations we all must make because of cancer.  Basically I am the same person I was before.  I have communication challenges just as others do (i.e., blind, deaf, etc.).  Does it make me special?  No, not at all.  If I didn't listen before, I still will not listen just because it takes an effort to speak/respond.  Will I pause before speaking?  Yes, but I did that before.  I never paused in speaking to my family and friends, and I don't now.  In a business situation I tried to "hold my tongue" before I was a lary.  My dreams, my aspirations, my loves, my angers remain the same.  I just have to accommodate how I deal with them.  For those of you who are better people, I salute and envy you.  Personally, I am the same as I was before, I just must make accommodations and slow down for those who have trouble with larys.  And I thank God for my support systems that include WW.
(Vicki Eorio)

    Oh my yes, I realize how important my attitude and my faith both are.  I really feel that both items have brought me through the rough spots with flying colors, and give most of the credit to trust and believing in (you know who).  Just keep smiling and the rest is automatic.
(Doris Gifford)

    I believe my laryngectomy (on St. Patrick's Day of last year) and everything that went with it and presently goes with it, has taught me some pretty good reality lessons.  About 15 years ago I made a life changing decision: to change my life style.  I have only profited by that decision in all aspects of my life (family, relationships, jobs, etc.).  And, I might not be here right now if I hadn't made that decision, so I wasn't going to let cancer or anything else get in the way of accepting life on life's terms and enjoying life as best as possible.  I've learned that life is not a "test," it's more of a lesson; I can fail a test, but I can always learn something from a lesson.  So, in answer to the question has it made me a better person: SURE! It has reinforced what I believe in today, it could always be worse.
(Hector Maldonado)

    I don't know if I would say that I was a better person after having a laryngectomy because of cancer.  I had lost my son to brain cancer just five days before my operation.  Did that make me a better person?  I don't think so.  I was angry with God for not only taking my only son, but also that I had now lost my voice.  I do know one thing that has come out of this.  I don't sweat the small stuff anymore.  I am still somewhat opinionated (yeah I admit to that), but I'm working on that too.  I have always considered myself a good husband and father.  The thought that I came very very close to death sometimes scares me a little, but now I think I am going to live my life out to the best of my ability and enjoy it.  I sure don't think I am a better person for being a lary.  I feel sorry for myself, I miss the old me, I have no patience with myself, my family or the outside world.  I have a tendency to come to tears whenever I hear a singing voice (which I did).  That is strange behavior for a veteran of two wars.  I am grateful in other ways and I realize that a hole in the neck is better than a hole in the ground.
(Rock Bragga)

    After all the wonderful people Jan and I have met since I was diagnosed, I have come to the conclusion at least one member of every household should have a laryngectomy and this world would be a better place to live.
(Roger Scharmen)

    A better person?  It has humbled me in many ways, it has slowed me down, this "type A" personality has finally started to enjoy life.  After going as low as I had ever been before and coming back, there is no way you can make that journey and not be a better person for it.  I continue to be a nurse and I work in a nursing home, and I laugh a lot with these people--they talk Dutch and I talk robot!!!
(Pam Ridgeway)

    My having cancer of my larynx is not the first time I have faced death.  I faced death many times 55 years ago when I was a fighter pilot during WWII.  I was almost killed five times.  I got used to the idea of death. But I figured that if I didn't get killed flying, I wasn't about to let cancer kill me.
(Jim Doby)

Loss of Bob Hodge Saddens WW Members

    Bob Hodge, who had been serving as VP- Member Services for just over a year, had been fighting a recurrence of cancer, a metastisis to the lungs, which was being treated by radiation.  Everyone was hopeful for his recovery, so his death on October 9, 2001 was not expected.

    Bob was liked and admired by many of us and was extraordinarily proud of the WebWhispers brochure he produced and that pride was justified.  He was able to obtain a promise from a friend in the printing business, who had lost a family member to cancer, to furnish us with that initial printing at no cost to us.

    WebWhispers has established a fund in Bob's name which will eventually be used to print more of these brochures and to carry on Bob's work.  Contributions should be marked for the "Bob Hodge Memorial Fund," with checks made out to WebWhispers and sent to:


Terry Duga
6115 North Park Ave.
Indianapolis, IN 46220

Lary Gear

    Many of us use tweezers for one thing or another. Many TEP users find them handy to latch on to crusted mucus on or around the prosthesis.  And of course any of us can use a pair when we have a splinter.

    So, what are the best tweezers out there?

    It turns out that some of us think the best tweezers out there are not be tweezers at all, but hemostats or clamps.  At first glance hemostats look like they are scissors, but are blunt on the end.  What gives them such superior gripping power is the locking teeth between the finger holes.  One or two clicks will lock on to whatever they are gripping like a vise.  A slight twist of the fingers unlocks the teeth.

    Unlike most tweezers, they seem to be virtually indestructible and all those we have seen are made of stainless surgical steel. 

    Costly?  Not really, if you know where to look.  They are available from military surplus and hobby stores, and are likely to be much cheaper purchased there than at medical supply dealers.



    We found the ones pictured from an on-line dealer who sells them for from $2.49 for 3 1/2 inch, to $2.99 for 6 1/2 inch hemostats (curved ends or straight).  And volume discounts are available which reduces the price to closer to $1.50 each.  The only catch is that the shipping charge is $3 for uninsured, or $4 for insured.  However, one local support group solved that problem by pooling their money and ordering a dozen pair of the 5 inch ones for $17.99 plus $4 insured shipping.  So each member paid just $1.84.  The company also sells a great many other gadgets and tools for hobbyists at reasonable prices:  http://www.widgetsupply.com 

Not Enough Volume?

    One advantage for almost all electronic larynx users in a noisy environment is that they can just turn the volume up.  But what about traditional esophageal or TEP (Tracheo-Esophageal Puncture) prosthesis speakers?  Is there any way to increase volume?

    Here is a short article on the subject from a 1978 issue of the IAL News :

"
Talking Loudly - How? 

    Because of widespread interest in the goal of attaining louder and more distinct sounds in esophageal speaking, the IAL Speech Standards Committee will offer several short articles on the subject.     The following suggestions are the first of the series.

    Society tends to judge talking loudly with esophageal speech as better than talking softly.   This is a goal of many laryngectomees in the early stages of learning esophageal speech.  A question arises: How can esophageal voice be made louder?  Two means are: (1) to tighten the tissue at the top of the esophagus where sound is made and, (2) to push air from the esophagus harder against the vibrator.  Vibrator tissue can be tightened by turning the head to one side, or by pressure against the neck at the level of the vibrator-with a finger, an elastic band, a tighter shirt collar, tie or stoma cover around the neck.  Vibrator tissue can be tightened from within as the speaker consciously thinks about raising the pitch as well at loudness level.  Exhaling air from inflated lungs more forcibly and more rapidly may result in pushing air more forcibly up from the esophagus.  Talking loudly may be accompanied by a pulse of the stomach or a jump of the belt buckle."

    This article was shared with a number of SLPs (speech/language pathologists), and they were asked to respond to it and, if appropriate, update or add to the information.

   
I use these following methods with my patients with good success.  1. Use a wider mouth opening when speaking,  2. Use a fairly tight elastic band around the lower base of the neck to bring the crico-pharyngeal muscle closer together, and very importantly,  3. Replenish the amount of air taken in MORE OFTEN by using shorter phrases. (Mel Hyman, SLP)


   
Uncle Jim adds: for volume, retract the head to compress the PE at the neck.
   
(Jim Shanks, SLP)


   
The . . . individual will firstly need to be able to increase the pressure of the air that is vibrated for the sound.  By increasing the pressure below the level of tissue vibration, the tissue will repeatedly collide with greater force allowing a greater sound pressure level to be created . . . . A couple of other needs may possibly arise such as needing a larger amount of air to power this sound...it depends upon the length of the speech utterance.  In addition, the vibrating tissue may need to be tightened to some degree so that it can resist the greater driving pressure from below and not release all of it in one output.  The article . . . is addressing the issues surrounding how to generate increased pressure and how to prevent loss of the power source too quickly by addressing quicker deflation of the lungs to augment driving pressures and increased tension of the vibrating tissues.  If there were some way to train the pharyngeal muscles to increase their constriction in select areas, that would be even more ideal...projecting the needed air to just below the vibrating segment, and then projecting the air out in such a way as to increase the sound pressure level.  
(Julie Barkmeier, SLP)

   
If a person has a low intensity "soft" TEP voice, they may have a loose PE segment, meaning the vibrating source is loose and needs to be tightened up.  It is possible to do this by changing head position or pressing on the neck in that area.  Some TEP speakers often use change in head position without being conscious of it. . . .  
(Darlene Houston-Willis, SLP)

   
By and large, the tonicity of the pharyngeal-esophageal (PE) segment determines the efficiency for esophageal speech and volume.  Techniques to increase the volume . . . are two fold: biomechanical and compensatory.  On a biomechanical level, adjustments to the PE segment can be made by body positioning, finger manipulation or a belt.  Body positioning includes turning the neck to the right or left or positioning the neck in some way to provide optimal tonicity of the PE segment.  Several of my patients have successfully increased volume by turning their head upwards and to one side.  Finger manipulation or pressure can be gently or firmly applied to the neck to increase the tone of the PE segment.  Finally, a . . . (“belt”) can be applied to the neck to increase tone to the PE segment.  This simple tool consists of a velcro band and a urethane rubber "lump".  The lump portion of the device is positioned on the PE segment to increase its tonicity.  On a compensatory level, several devices have been designed to amplify or enhance a weak esophageal or TEP speech signal.  These types of devices pickup the weak signal using a microphone and boost it using electronics and a loud speaker.  Voice amplifiers are personal and portable and work extremely well in these types of cases. (Brian Shute, SLP)

   
The article you cited is reasonably accurate.  Just remember that T-E speech IS esophageal voice but is pulmonary assisted rather than using an "air charge" as in CLASSICAL esophageal voice.  The pressure suggestions will work. (Louis La Borwit, SLP)

   
My prosthesis is designed to address the problem of a weak pharyngeal-esophageal segment.  Patients with weak P-E segments have soft or weak voices as one of the clinical signs of this problem.  In a sense it does increase loudness, but that is a by-product of what the prosthesis was designed to treat.  The prosthesis can be use by both esophageal and tracheoesophageal speakers (TEP).  Please note that the prosthesis is dispensed ONLY TO PROFESSIONALS. (Dan Kelly, SLP)



    (Note: The prosthesis pictured above was demonstrated by Dr. Kelly at the Myrtle Beach Voice Institute this past August. Each prosthesis is custom designed for each patient after evaluation and measurements by a clinician. Interested clinicians can reach Dr. Kelly at dan.kelly@uc.edu.  There are other manufacturers and distributors of products which perform the same function including
Communicative Medical). 

Dial 711

    A reminder that beginning October 1st the three digit number 711 can be used as a shortcut to access Telecommunications Relay Services (TRS) anywhere in the U.S.  TRS facilitates telephone conversations by one or more people who have speech and hearing disabilities.  All telecommunications carriers in the United States, including wireline, wireless and payphone providers must provide 711 service.  Pictured is the logo for the Texas program.

My Way (Of Attaching an HME/hands-free Valve Housing)  by Bob Smith

    This is my way of attaching the housing for my traeocheostoma valve so I keep a good seal for an extended period of time.     This could also be used for an HME filter by itself.

    1. The tall canister holds a number of rolls of HY TAPE.  The white jar holds Eucerin cream
         to be applied to skin when housing is removed at night.

    2. Pressing the housing firmly into the tape disk using the edge of my scissors.

    3. Carefully cleaning around the area to be taped with "Skin Prep".

    4. Attaching the housing.

    5. I apply four strips of tape all around the housing.

    6. I apply a second row of tape strips overlapping the first and extending further outwards.

    7. I smooth all the tape down for a tight fit.

    8. Ready to insert tracheostoma valve.

Writing Slates - Make It Yourself

    In the August issue several products were mentioned which new laryngectomees can use for writing in the immediate post-operative period when talking is impossible or difficult.     In addition to the the Magnadoodle (and other brand) magnetic writing tablets, the Lary Needs Chart from Inhealth was mentioned:  WebWhispers Journal - August 2001

    Local laryngectomee support groups might also want to also consider making a quantity of writing tablets to lend or give to new larys.  They can be made very inexpensively by anyone with a table or other saw and a miterbox.  12 by 16 inches is a good size, and a total of 24 can be  made from a single four by eight foot sheet of shiny non-textured wallboard.  While taping up the edges may be adequate, a safer and more attractive tablet can be made by using wooden or plastic trim cut with the miterbox and nailed and glued together into a frame around it.  A number of styles of trim are available and one which is protective of the entire edge is best.  Dry-erase marking pens work best.

Lung Cancer Awareness Week

    November 12-17th is "Lung Cancer Awareness Week."  Activities are planned during these designated weeks to raise public awareness of the identified medical problem including the importance of early detection, screening, new treatments, and survivor issues.   Many local laryngectomee support groups who are active in anti-tobacco use education programs join with local agencies to help publicize this related cancer.  Half-day conferences in a number of cities will address advances in research, psychological issues, and treatment options.  For more information, the locations, dates, and contact telephone numbers are listed below:

Atlanta, GA: November 17th (404-845-5640)
Boston, MA: November 17th (617-332-1919)
Cincinnati, OH: November 17th (513-791-4060)
Indianapolis, IN: November 16th (317-257-1505)
Los Angeles, CA: November 17th (310-314-2555)
Philadelphia, PA: November 4th (215-879-7733)
Phoenix, AZ: November 2nd (602-712-1006)
San Francisco, CA: November 16th (925-933-0107)                
Sarasota, FL: November 8th (941-921-5539)
St. Louis, MO: November 10th (314-993-4333)

    In addition to the educational conferences listed above, during the month of November a number of "Ask-the-Doctor" workshops will be held in the following cities:



Lary Laughs

Lary-o-Lantern

by Judy Greiwe

Welcome New Members 

    We welcome the 21 new members who joined us in October:

David Askevold
 Herring Cove, Nova Scotia, Canada 
askevold.ready@ns.sympatico.ca 
Dennis Bailey
 Burton on Trent, Staff.,UK 
BARBARA945@aol.com 
Joe Brodie - Caregiver
Philadelphia, PA
P5495@aol.com 
Lydia DeFago
Tinton Falls, NJ
leesali@aol.com
Kathy Dow - Caregiver
Upper Saddle River, NJ
Kaydeedow@aol.com
Vincent E. Downs
Chesapeake, VA
Genedowns@aol.com
Hans Fischer
Essen, Germany
kehlkopflose@aol.com
Dennis Haring
Fairmount, GA
dinger44@juno.com
Pat Harper
Bray Park, Queens., Australia
patharper@optusnet.com.au 
Ernest Jacques
Melbourne, FL
LisaMarieandM@aol.com 
Betty Labigang
Quapaw, OK
betlu@rectec.net 
 Ruxandra Marinescu - Caregiver 
Athens, OH
ruxandra_m@yahoo.com 
Brenda Maurer
Fordyce, AR
ardumpln@seark.net 
Michael Michel II
Fairbanks, AK
karenm@ami-ak.com 
Robert Monti
Barnegat, NJ
rmonti12@home.com 
Margaret Rehkopf
Juno Beach, FL
Teragram111@iopener.net 
John Small
Bridgeport, CT
small-j@sbcglobal.net 
Gena Stafford - SLP
Dresden, TN
gena__rae@hotmail.com 
Yvonne Starks
Columbus, OH
Starkey32@webtv.net
P. Michael (Mike) Watley
Fulton, MS
Myeltaw@aol.com 
Shirley Wilson
Cleveland, OK
GigandPop@aol.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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