HEADLINES

Kirklin Clinic Head & Neck Cancer Support Group,  Birmingham, AL

distributed by American Cancer Society

Pat Sanders, Editor

December 2004
 

The Importance of “Friends”
by David L. “Dutch” Helms
WebWhispers Webmaster

 

Setting the Scene

 

In the period just before I was diagnosed with larynx cancer, the following significant events had occurred:

(1) After months of futile marital counseling and medical interventions I separated from an increasingly alcoholic spouse in 1990 and was granted a divorce in early 1991.

(2) Shortly thereafter I was transferred to a new duty station in Bonn, Germany.

(3) In late 1992, my  “soul-mate” and “woman of my dreams” back in the USA suddenly reconciled with her estranged husband a mere three weeks before our scheduled wedding. 

 

At that point my “family” consisted of an older, but ill, brother and a nursing home bound mother in Ohio and a distant, cut-off daughter from a previous marriage that had ended in 1979 when my then wife took a “vacation”, taking our daughter, and then moved in with and eventually married her sister’s husband’s brother!  In short, when initially diagnosed with larynx cancer in mid-1993 my “family support network” was virtually non-existent and it was from that point onward that I came to know the REAL VALUE of FRIENDS.  Had it not been for my friends, I am not sure how I would have survived, recovered, and indeed prospered after my experience with larynx cancer and its aftermath.

 

To avoid embarrassing them unnecessarily, should they read this, I will use only my friends’ first names as I tell this tale of the value of friendships.

 

Larynx Cancer

 

After losing my voice and being initially diagnosed with larynx cancer in Bonn, Germany, the USAF decided to MedEvac me to Wilford Hall USAF Medical Center at Lackland AFB in San Antonio, TX for radiation treatments. While I was gone for those two and half months, my friends back in Bonn, Mark, Dave, Annegret, Rosemary, Monika, “Dusty”, and others took care of my apartment, watered the plants, paid my bills, and took care of my car and mail, etc.  Through friends in San Antonio, especially Jack and Jan, I was able to find temporary employment at Kelly AFB so that I could work while undergoing radiation - something that saved me from losing all my built-up sick leave.  My best friend from high school, Mike, was living near Houston but was often in San Antonio on business … so he visited me regularly and often, as did other friends, such as Penny, Bob, Jack, and Letty.  In late September of 1993 I was declared “cured by radiation” (allegedly), and though 45 pounds lighter, I returned to Germany to find everything shipshape and perfectly in order.

 

Unfortunately after barely three weeks back at work, I began to lose my voice again and it completely disappeared by early November.  I KNEW what that meant and became more and more depressed, bordering on suicidal.  With the help of friends, I again packed off to the hospital … this time to the mental health units at Frankfurt, Landstuhl, and Walter Reed … finally ending up back at Wilford Hall in San Antonio in January of 1994.  Wilford Hall was initially unsure of what was actually occurring, so I spent much of January through March undergoing tests, hyperbaric oxygen treatments, and more tests.  When not living in the Lackland AFB Visiting Officers’ Quarters, I stayed with a few friends in San Antonio and also quite a bit with my best friend from high school, Mike, and his wife, Pamm, and their three girls, Leigh, Laine, and Melissa, in their home outside of Houston.

Meanwhile, back in Germany, my friends and co-workers knew I would not be coming back to work there.  Through phone calls and faxes, we processed my departure from the federal civil service … all those complicated personnel, insurance, and financial matters.  Additionally, my friends, especially Dave, Annegret, and Mark, arranged for the sale of my two cars and for the movement of all my household goods and personal effects from Germany back to Texas.  I hardly had to lift a finger … they took care of EVERTHING!!

 

Heart, too?

 

In late March, my doctors discovered I had a heart problem that had to be squared away prior to any major laryngectomy surgery. So, on 1 April 1994, I underwent single cardiac bypass surgery.  Again, in the post-op period, my friends visited and called … even though all I could do at that point was “whisper”.  When I was informed that my laryngectomy would be scheduled for 1 May, my best friend, Mike, told me I should expect to stay with him and his family … they were more than generous in extending that kind of hospitality!  So, between 10-30 April, I stayed at Mike’s and while there was invited by them to stay “permanently” with them after my laryngectomy!!  It was an offer I could not refuse.  Knowing I would soon be “voice-impaired”, Mike and I went shopping and returned with a complete computer system (my first) and got it set up and running in his home office before I headed back to San Antonio for my laryngectomy.  Little did I know at that time how fortuitous and influential that computer purchase would eventually be.

 

To make a long story short, I underwent my laryngectomy on 1 May 1994 and, due to fistula complications, was not discharged until the 15th of June.  During those six weeks, many friends dropped by to visit, but especially attentive and concerned was Mike and his family.  They were simply “THERE” for me … 150%.

 

Learning to talk, to compute, and to live

 

So, in mid-June 1994, I moved in with Mike, Pamm, Leigh, Laine, and Melissa … into an upstairs bedroom of my own, sharing the bathroom with the three girls (what a joy for them, eh?).  Over the next months and years, this family of “friends” fully integrated me into their family life … to the point that I was soon known to their family and friends as simply “Uncle Dave”.  Living with Mike and Pamm and their three teen-age daughters “forced” me to stay active, engaged in life, semi-productive, and fully dedicated to getting “rehabilitated” as quickly as I could.  I am not sure HOW I would have handled this post-operative period without them … but I truly do believe that they not only saved me from possible reclusion and depression but quite possibly also saved my life!

 

In May of 1995 I returned to Wilford Hall for outpatient TEP/prosthesis surgery and was thus able to shelve my Cooper-Rand EL and replace it with Blom-Singer prosthesis speech.  I was also slowly learning the “ins and outs” of using a computer and by the end of 1995 had established my own personal web site on AOL.  Building on this experience, in mid-1996 I started to create a series of “Cancer of the Larynx” pages on my web site … an attempt to centralize the few larynx cancer sources that were then available on the Internet and a place to "talk" about the disease in layman's terms ... from the point of view of a larynx cancer survivor/laryngectomee. Also about this time, I finally moved out of Mike’s place and into an apartment of my own … electing to make my home the suburbs of Houston, Texas.  Needless to say, my friends Mike and Pamm helped me move and made the transition a piece of cake.  I also bought a new PC, leaving my old one with Mike and Pamm, and by Christmas of 1996, the basic Cancer of the Larynx site was up and running. I then hit on the idea of creating, on the site, a LIST of laryngectomees worldwide who would be amenable to accepting Email questions about the disease from "surfers" looking for information.

 

Stepping out into cyber space

 

We all know what has happened since then.  Those primitive “Cancer of the Larynx” pages have now expanded to the stand-alone “WebWhispers Nu-Voice Club” … with a web site over 91 megabytes in size, over 267 pages of information with well over 2,170 graphic images.   The club now has approximately 1,228 laryngectomee/caregiver participants in addition to 156 doctors, nurses, and SLP’s, and 34 laryngectomee vendor members.  Of these, over 900 actively participate on the club’s two Email ListServs which allow members to share experiences and to help each other in the full range of challenges of living life as a laryngectomee.

 

As a result, I have not only had the benefit of the love and support of OLD FRIENDS since 1994 and the new local friends I have made since then, but have also made many NEW FRIENDS through my association and work with WebWhispers and the International Association of Laryngectomees.  While many of these “friendships” began in cyberspace (via Emails), many have been deepened, solidified and sustained through the annual IAL meetings and through the WebWhispers events we were fortunate to have during these meetings … not to mention the WebWhispers cruises we have sponsored over the past few years.

 

In short, were it not for my FRIENDS, the quality of my life over these past 10-11 years would have been vastly different … far less full, far less enjoyable, far less productive, and far less worth living.  It is in the tough times that one finds out who one’s real friends are … and, luckily, in my case, when my tough times came, many of my friends were there for me and have remained so to this day.  Additionally, these “tough times” produced even MORE friends … from all over the USA and, in fact, the world.  

 

So, while my past and current “family support network” was and still is very limited, the love and support of my FRIENDS was and is always there.  Because of these many friends, I count myself greatly blessed … without them, I honestly do not know where I would be today.  In sum, I owe these friends my LIFE … and I hope and pray that, in my remaining days, I can lead a life that will warrant and vindicate the love and support they have generously and unselfishly given me.  God bless them all!!

 

*          *          *          *          *          *          *

Finding an old Friend

 

I have a friend I known and worked with for 35 years.  About 9 years ago, we lost track of one another because we were working in different places. Then in 2000 I retired after 33 years and moved from Maryland back toWashington State.  The larynx cancer showed up I started looking to WW for help.  Well, as luck would have it, I got an e-mail from this old friend from years ago, Jack Craig, and he is retired and moved to Sedona, Arizona. He is also a lary of 7 years and a member of WW.  I didn't even know it. What a way to meet a very helpful old friend again.  Lou Ridings,  Yakima, WA 

 

*          *          *          *          *          *          *

Who’s Got the Best Puncture?

 

On the streets of New Haven about 4 years ago, there was a kid with purple hair, tattoos, baggy pants and the total punk look. He had pins and rings in his ears, nose, lips, tongue and who knows where else. I was standing with a friend of mine, who asked the kid, "Why would you purposely punch that many holes in yourself?"  The kid lit a cigarette and said that he just likes being different and "the more holes the better".

 

My friend pointed to me and said, "As far as holes are concerned this guy has you beat.” The kid looked me up and down, blew out some smoke, and said, with a look of total distain, "Yeah, right".  I held up my index finger which immediately got his attention and said, "Keep smoking and you may catch up with me.", and pointing toward my neck,  I took off my scarf.  The kid's jaw dropped.. I put my scarf back on and said one word "Cigarettes" and turned to flag down a cab.    Bob Herbst

 

Coping With The Cut             by Jim McDougall, Greenock-Scotland

 

 

Having worked in shipyards and offshore oil rigs for many years, I considered myself to be fairly thick skinned and able to take a little stick and give it back without any ill feeling either way. So, from the moment I became aware of how "funny" my speech would sound to others, I decided that I would get among the general public as much as possible and let things be kind of "Que Sera Sera".  It has paid off because by and large, I became accepted as just someone who has had an operation and to the un-initiated, I had a "VOICE BOX" installed in my throat. Lots of folks still to this day seem to think that Laryngectomees have had a box put in where the operation has been done. I never contradict or advise anyone who says to me, "AH, you have one of those voice boxes in".  It serves the purpose of allowing them to think they know all about it and also to stave off having to explain that I have in fact have had my own "Voice Box" removed.  So generally,  I have coped pretty well with the initial stares. .However, one face-to-face, I must relate to you.  It was during the summer and about 4 years into my lary life. 

 

My daughter, who lives in Toronto, was coming to Scotland on vacation. At that time there were several summer activities planned by our local powers that be. I paid a visit to one of the information offices to make inquiries about some of these activities. Across the counter I asked the young lady if there were any brochures or other paperwork highlighting the period of my daughters vacation. She stared at me upon hearing my voice.  I use Esophageal speech (sometimes ok; other times not so ok).  It became apparent that she was just not understanding my request.  She then handed me a piece of notepaper and spoke out loud and quite deliberately, “Would-you-please-write-your -request-down."  Being the obedient (?) person that I am, I wrote the request down and handed her the paper back. The young lady then took the pencil and wrote "YES" on the paper and handed it back to me!! Ah, being the kind not to miss a chance of a bit of fun, I then took the pencil and paper and wrote "I am not deaf".  The young lady retrieved the pencil and paper and wrote "My apologies".  I then voiced a reply that we had better stop before we ran out of conversation and she raised her eyebrows and said, "Oh, I can make you out now, the brochures are over there",as she pointed the way. This ended our kind of paper-and-voice meeting and I went on my merry way.

 

My little piece for the Headlines is an insight to the manner in which I have endeavoured to cope with the way people in my neck of the woods, Greenock-Scotland, viewed me and my rasping voice after my operation and how I came to grips with the stares and sometimes avoidance by people who used to stop and talk with me in somewhat normal times. It starts really during my period of hospitalisation awaiting the operation and also immediately after the op.

About the fact that some folks who seem to now always have to "rush away" when they meet you, I simply just ignore them next time around, their conscience will tell them at some stage in their lives that they are the ones with a deficiency!