Internet Laryngectomee Support
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 email@example.com
(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 :
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 :
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 :
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
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 :
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.
Vendors of products mentioned can be reached at:
Winnipeg, Manitoba, Canada
|Neil H. Cox
|Thomas E. Gillen
Palm Springs, CA