Internet Laryngectomee Support
October 2000


Mickey and Me 
By Jerry Reynolds   
                                                        
    I was diagnosed with cancer of the tongue in August of 1998.  I retired in June 1999 after 38 years as an executive with a commercial records storage company in Los Angeles, CA.  I now remodel and build doll houses.

    My wife Gail and I are fans of Disneyland and have had annual passes for years.  One of our hobbies is to collect Christmas tree ornaments.  We have so many we will decorate seven Christmas trees this year.  My favorite is the Disney Character tree.

     On August 8th I was told I had cancer.  The first few days were pure agony.  It was just a few days later that we happened to receive a new ornament in the mail.  Gail brought it me and said "look, we received a Mickey Mouse as the Wizard ornament.  He's going to put his magic on you and cure you."  I took that little Mickey and cried.  Within a week or so we went to Disneyland and I bought a Mickey doll dressed as the Wizard. 

    I took the original Mickey with me to all meetings with doctors as I was getting second opinions and finally when I met my surgeon.  When I checked in for surgery I told the nurse that Mickey had to go with me.  I was told later the operating room staff used a surgical clamp and hung Mickey by his hat from the operating room light.  In the first photo of me in ICU you can also see Mickey hanging from the IV pole.  He went everywhere.  During radiation treatments he was there every day.  When I went for a walk, he went too. 

    It was winter during the worse part of my recovery so I just stuffed him in a jacket pocket with only his head sticking out.  He went every time I gave blood and even when I went to the grocery store.  All kinds of people asked why I had Mickey along and I shared my story, only to find still another person with cancer.

     I know Mickey didn't do anything, he's a doll.  But he did!  He kept me aware that I had to fight at every turn. I had to fight just to get out of bed at first, to sleep, to talk, and, most of all, to eat.  The struggle to eat really took its toll in weight loss, but Mickey was there and I made it through.  I'm now over two years cancer free. Hallelujah!

    I passed the original Mickey on to another cancer victim, a waitress at a local restaurant we frequent.  And she subsequently gave it to another person who had cancer, always with the stipulation that it has to be returned if not passed on.  I don't know where that original Mickey is now.  But there have been many more distributed by me since the original.  My personal one now is a doll that stands about 24 inches tall and is on the headboard of our bed.

     Just a few weeks ago my surgeon wrote a letter to my radiation oncologist stating that I was his star patient, that my recovery was so great, and my attitude was always positive.  This is really something since my surgeon is a full professor at one of the largest teaching medical universities in the world and has never even met my radiation oncologist.  He just wrote the letter out of the blue.  Maybe Mickey helped me to remember to be positive.  I know my positive attitude helped me heal.  I just mailed another Mickey to someone else fighting cancer. 

For me, I can only say, thanks Mickey.

Jerry can be reached at glrinlb@gte.net

(Editor's Note - While Jerry is not a laryngectomee, he has shared many of the problems we have. The IAL is looking for ways to collaborate with the Yul Brynner Foundation which represents all head and neck cancer patients including laryngectomees).

Leaking Around the TEP

    WebWhispers member William Vance suggested in a recent e-mail that those who experience minimal leakage around their 20 Fr. prostheses may get some relief if they put in a 16 Fr. prosthesis overnight.  They could  use either the duckbill as he suggests, or the low pressure.  Doing this would allow the puncture to decrease in diameter. 

    The use of the gel cap insertion method without dilating, or using a 16 Fr. dilator (stent) should be done when reinserting the 20 Fr. so as to not create the problem again through stretching.  One of our ENT members recommends taping the safety strap of the smaller diameter prosthesis securely above your stoma if a 20 Fr. wearer downsizes temporarily to a 16.  This would help to make sure it neither drops down into the esophagus or, worse, down your trachea.  Continued leaking around the prosthesis may indicate a more serious problem with tissue health, and seeing your ENT is always recommended.

CAL Conference - October 12-15

    Ever sleep in a National Historical Landmark?  Those lucky enough to have already registered will get the chance to do just that at the California Association of Laryngectomees convention to be held at the historic Mission Inn in Riverside, California in mid October.  The convention will feature speakers and workshops of interest to laryngectomees, their families, speech pathologists, and students.  Many of the top experts in the field of laryngectomee rehabilitation such as Jim Shanks, Shirley Solomon, Jan Lewin, Merle Irvin, Irene Hennessy, William Armstrong, and others will be conducting workshops and giving presentations.  A special dinner for WebWhispers members will be held on Friday night.  The Saturday dinner and dance has scheduled entertainment including the Ink Spots, some of the cast from "Cats," and a possible guest appearance by Wayne Newton.  For more information contact Bob Crawford, 722 West E Street, Ontario, CA 91762  (909)984-4904 Email: LCURLEY@earthlink.net
Additional information can be found at :
http://www.larynxlink.com/Clubs/Club_Pages/cal2000.htm


FLA Convention


     The annual FLA Convention is slated for November 2- 5 at the Treasure Island Resort in Daytona Beach Shores, Florida. The format this year is a unique combination of the Voice Institute and Convention with faculty working directly with laryngectomees instead of through SLP trainees.  Faculty and convention speakers include Ed Stone, Lisa Proper, Nancy Blair, Bruce Pearson, Annette Miller, Penny Fisher, Ann Staley, and Joanne Fenn. Social events include a golf tournament, historic tour, meet and greet party, sing-a-long, skit, craft sale, vendors, complimentary AL repair, banquet and dance, and others.  For additional information contact: Charles E. Blair, 8745 Maplewood Road, Largo, FL 33777, Phone/fax 727-391-3473 
Additional information can be obtained at :
http://www.larynxlink.com/Events/FLAAC2000.htm

WW Pins Special

     Our new Secretary, Bob Hodge, recently announced the continuing availability of our WebWhispers logo membership pin and of a special offer.  Pins are available for $5 each, but if you purchase five, you now get the sixth one free.  They make wonderful gifts and the money goes to support the work of our organization. Place your order with :

Mr. Bob Hodge, WW Secretary
220 Kelso Court
Cary, NC 27511

You can see the pins in greater detail on our website :

http://www.webwhispers.org/pages/MemberServices.htm

Darlene Parker Honored

     WebWhispers honored Darlene Parker of Dallas, Texas in September.  The award recognized Darlene's outstanding service as Secretary from 1998 - 2000.  The award read in part, "Darlene provided invaluable services to the organization during its early years and continues to do so in her capacity as Custodian of our Loaner Closet.  Her efforts are greatly appreciated! Thank you, Darlene!" Congratulations. 

    Darlene resigned as Loaner Closet Custodian on September 28th.  Again, thank you Darlene for your past contributions to our organization.  Requests for items from the Loaner Closet should now be directed to Bob Hodge, 220 Kelso Court, Cary, NC 27511, or e-mail him at: BHodge8937@aol.com 

Darlene can be contacted at
darlene1@airmail.net

Bruce Medical Now on the Internet

     Bruce Medical, which sponsored our cocktail hour prior to the WW Banquet in Nashville, is now on the Internet.  They continue to feature special prices on two voice amplifiers and the Servox through the end of October. 

Visit their new website at :
http://www.brucemedical.com

WW Officers Elected for 2000-2001       

    Electronic voting for WebWhispers officers took place in September, and 111 voting members participated in the election.  Elected to office were Murray Allan, President, from Richmond, British Columbia, Canada; Pat Sanders, Vice President, from Birmingham, Alabama; Bob Hodge, Secretary, from Cary, North Carolina; and Terry Duga, Treasurer, from Indianapolis, Indiana.


    Murray wrote, "Speaking on behalf of all officers we look forward to a very good year where we can assist as many persons as possible.  We solicit your input and knowledge because we all want to be a TEAM working together."


Hands-Free/Glue-Free

    We start talking with a TEP when the puncture is healed and the TEP prothesis is inserted.  The user occludes (or covers) the stoma with a thumb or finger in order to direct air from the lungs into the esophagus for speech.  Many who use the TEP prosthesis would like to be able to use it without manual occlusion in order to free up the hand for other purposes, as well as to be less conspicuous.  Some of the best users of the hands-free valve may go unnoticed as alaryngeal speakers even by fellow laryngectomees.  A number of those who heard Pat Morgan speak in Nashville were unaware that she was a laryngectomee because of the excellent quality of her voice and use of the hands-free valve.

     The hands-free valve works when the user expels enough air from the stoma that the valve closes and air is redirected through the prosthesis and into the esophagus.  It is occlusion controlled by breath and, just like with your thumb or finger, the air is then used to vibrate a segment of the esophagus and produce a tone.  This tone is further modified by the lips, teeth and tongue to make the speech sounds.

     Many of us who speak using the TEP prosthesis try the hands-free valve, but abandon it after a time.  A major reason for this is the failure of the glued on housing to keep a seal.  The housing is intended to last for 12 hours or longer, but the seal often does not last that long.  The principle cause of seal leakage is excessive pressure, but mucous, moisture, and failure to apply it correctly also play roles in premature seal failure.  Others stop using the hands-free valve because of adverse skin reactions to the glue, the cost of supplies, the frequency of clogging the filters with mucus, or simply not wanting to spend the time it takes to clean off the glue, prepare the skin, and attach the housing.

     Some laryngectomees who have the TEP may be able to have a hands-free valve without the glued on housing by using the valve in combination with a tracheostoma valve such as the Barton/Mayo "Button" from Bivona, or the Provox LaryTube from ATOS.  Those who can move air through the prosthesis without using much force may be able to use this approach, whereas those who use a lot of air pressure will not since air will leak from around the tube.  The Button is held in place by a rounded flange at the tracheal end and the natural gripping pressure of the stoma.  The Tube relies on this gripping pressure alone.  Both come in a variety of diameters and lengths to accommodate different size stomas, so your SLP must measure you to get the proper size.  Both the Bivona Barton-Mayo Button and Provox LaryTube are prescription only devices.

     Costs are similar with the ATOS LaryTubes costing from $80-$100 depending on design, while the Barton-Mayo is priced by Bivona at $92.  The hands-free valve including the recommended foam filter housing from Inhealth is $175 (with replacement filters costing $1 each when purchased in packages of 30).  The Bivona hands-free valve costs from $124-$146, but does not come with the foam filter housing.  However, it could be used in conjunction with a standard glued on foam filter patch or cloth stoma cover.

    Even if the TEP user discovers that the hands-free valve does not work well for their particular problem, they might be able to use it to hold the Provox stoma HME (heat/moisture exchange) filter which filters the air and has a manual spring loaded mechanism for indirect manual occlusion.  The Provox combination spring loaded valve and antibacterial foam filters cost approximately $3 each and are also designed to be changed at least one per day.

    So if you are a TEP user who tried the glued on housing but stopped using it, you might want to give this other approach a try.  This method would be especially helpful to a TEP user who had stenosis, or a tendency for their stomas to shrink in size and would be wearing the tube anyway.

Vendors of products mentioned can be reached at:

http://www.atosmedical.com/
http://www.bivona.com/cgi-bin/bivona.storefront/
http://www.inhealth.com/




by Judy Greiwe (jgreiwe@iquest.net)

Welcome New Members 

We welcome the 7 new members who joined us in September:

George Ackerman
 Winnipeg, Manitoba, Canada 
ackerman@pangea.ca
Neil H. Cox
Roscoe, MT
nhcox@mcn.net
Thomas E. Gillen
Bayonne, NJ
Norespect91@aol.com
Edna Hackman
Hockessin, DE
sgp505@yahoo.com
Stan Huffner
Cincinnati, OH
shuffner@yahoo.com
Tom Jarosz
Palm Springs, CA
 NiteOwlTom3@aol.com 
  Mark Schofield
Malden MA
 MSchof9597@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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