HEADLINES
Pat Sanders, Editor
Kirklin Clinic Head & Neck Cancer Support Group, Birmingham, AL
distributed by American Cancer Society
December, 2001

Chaplain in a Cancer Center                         By Barbara Watts

I am the Chaplain in the Cancer Center at Brookwood Hospital in Birmingham, AL and a good bit of my time is spent dealing with loss. Loss of health, loss of time, loss of physical abilities, loss of hair, loss of independence, and sometimes loss of life.

Often people will say to me "I couldn’t do that." or "It must be depressing." If I told you it didn’t take a lot of emotional, physical, and spiritual energy to walk with people through this cancer process, I wouldn’t be telling the truth. It is often sad. So sad sometimes I think my heart will break, but it is not depressing. How can I say that? Because most of the time in dealing with these losses, people find something they didn't expect. People find hope about life, they find courage, they find who they really are underneath and inside that 'outer' covering we call a body. They find out how many loving and caring people there are in this world. They find reasons to live and, sometimes, reasons to die.

People with cancer understand loss better than most of us but they also understand finding and being found. Finding their life and finding their purpose is a true gift. Although I see it and experience it over and over again, I continue to learn more about life and myself through their journey.

The greatest lesson I have learned from all of the shared times with these people, who have cancer, and their families, is that God is a living presence even in the 'lost-ness' of cancer. Yes, I am the Chaplain, an ordained minister and I am supposed to be showing them the way but I have seen the face of God, my life been touched by his son Jesus, I have felt the presence of the Holy Spirit in the dark valley of cancer. People have opened themselves to me, trusted me, loved me beyond measure and allowed me to love them in return.

In the valley of the shadow of death, his light has been revealed to me in a way I never thought possible.

EFFECTS OF ESOPHAGEAL DILATIONS ON TEP PUNCTURES

(Taken from the WW HealthHelp listserv, March, 2001)

Question 1 - Is it common for an esophageal dilation to push against the esophageal end of the puncture to the extent that it changes the prosthesis size or type? If so, will it settle back into place?

Question 2 - Relating to the same dilations, does the stretching of the esophagus affect the ability to produce sound to the extend that voicing is a problem for either TEP or Esophageal speakers?

Since these are related questions let me see if I can tie them together in one answer. First of all the need for esophageal dilation is NOT an uncommon problem for some laryngectomees. Dilation is required when the upper end of the esophagus narrows (stricture) to the point that it is difficult for patients to pass food and/or liquid while eating. When dilation is required, scarring and/or fibrosis is usually the cause of esophageal narrowing. Almost always the stricture is above the level of the TEP and voice prosthesis. However, all TEP tracks are not created equal. As many of the members of Webwhispers have so apply noted "no two patients are exactly alike". If the angle of the TEP track is in a more upward orientation, then the esophageal side of the prosthesis will be closer to the area of narrowing and dilation may have more likelihood of altering the track itself. Depending upon where and how long the stricture may be, it is possible for dilation to change the configuration of the TEP track in the common party wall (the tissue where the puncture was made). If this occurs it may be necessary to change the size if the prosthesis. If alteration to the prosthesis size is necessary it is important that this be monitored for several weeks following dilation. It may be necessary to make several changes in prosthesis size before the track becomes stable.

Since ESOPHAGEAL and TEP VOICE is dependent upon the vibration of tissue At the upper end of the esophagus, dilation often alters the quality and loudness of voice. This is a common complaint of patients who must undergo dilation of the esophagus. Unfortunately, there is no easy answer or fix to this problem. If the voice weakens, digital pressure to the segment area may be the answer for some patients. There is at least one (secondary) prosthesis available for patients who experience weak pharyngeal-esophageal segments (P-E). Webwhispers and SLPs who will be attending the IAL meeting at Myrtle Beach and who are interested in knowing more about weak segment problems are welcome to attend my Voice Institute session where this will be discussed in depth and the secondary prosthesis demonstrated with patients. If change in voice occurs following dilation, it is important for Patients to work closely with a SLP/Voice Pathologist who understands weak P-E segments to achieve the best possible voice for them.

Dan H. Kelly, Ph.D.
Associate Professor
Otolaryngology-Head & Neck Surgery
University of Cincinnati Medical Center

RETURNING TO WORK AS A LARYNGECTOMEE

By Ron Langseth <rlangset@mediaone.net>

I’m one of those guys who followed Dad into his trade. Dad was in construction; he worked in sheet metal (I’m eternally grateful he wasn’t a roofer or plasterer). Sheet metal work, to me at least, was more interesting than most of the trades, and sometimes even fun. There was a lot of math to it, particularly geometry, which was my most fun subject in high school. Sheet metal work wasn’t always clean, but certainly cleaner than the above mentioned trades, or painting. And, I got all the exercise I needed. Mainly, it was rarely boring.

I started working in 1959, right after high school. I smoked (had been since junior high) and drank beer (didn’t all "hard hats"? It was almost expected). Got to be a pretty good pool player, too. Bar tournaments, you know. In those days smokin’ an’ drinkin’ was part of workin’ in the "trades". Nobody gave it a second thought. We were only vaguely aware it was bad for you.

In July 1984 I was 43 years old, right in the middle of my working career. I decided to see what that lump in my throat was. Surprise, surprise. It was cancer. The first thing the doc said to me was, "You smoke, don’t you?" (Pack and a half. Luckies.) The second thing was, "Get thee to a hospital!"

On August 15 Dr. Frederick Turnbull removed my larynx, and the lymph nodes on the right side. Before the operation I told him that I wanted to return to work, so would he please be cool with the shoulder muscles. I think he did a great job; I can raise my right arm high above my head, although it took a lot of work and exercise. Dr. Turnbull was justifiably proud of his work on me. He called me his "masterpiece". Well, if I was, he was my "Old Master". He’s gone now.

"In order to go back to work I need to talk," I said (well, wrote). Well, Dr. Turnbull poked a hole in my throat, slapped in a TEP, and away I went (Oh, yeah, it was that easy. Ha, ha, ha!).

When I finally went back to work (4 hours a day for a week, 6 hours for a week), I knew I was facing some problems. F’rinstance, I needed a free hand to talk (the hands-free valve didn’t work for me). Turned out to be a non-problem. On the occasions I couldn’t free up a hand to speak, I could get out a few words esophageally or signal with a nod of the head. Ambient noise was a bit of a problem; I sometimes had to find a quiet spot to talk, or keep my mouth shut. Come to think of it, having a laryngectomy gives you a good excuse to keep your mouth shut.

Dust and fumes can be a problem for laryngectomees, and there are plenty of both on construction jobs. The little foam squares under a cloth stoma cover helped quite a bit. Some days they would sport a nice black circle about the size of my stoma, evidence of what would otherwise have ended up in my lungs. Eventually, the risk of prolonged breathing of dust and fumes prompted my retirement, a year and a half short of my original target of forty years. But not until I had worked over thirteen years as a laryngectomee, over one-third of my working life.

At 57, retirement looked pretty good to me. But not at 43. I’m glad I worked those 13 ½ years.

---Ron

Comments and an update:

A lot of the new patients I see, pre- and post-op, are concerned with going back to work. I usually tell them how I returned to work for more than thirteen years after my laryngectomy, and how those problems I did encounter usually turned out to be pretty small. My story always seemed to encourage the listener, so I decided to put it on paper in the hope some readers might find it helpful.

In addition to editing CAL Voice, I'm president of the Orange County Lost Chord Club, and this year I'm chair of the 2002 California Association of Laryngectomees annual meeting and voice institute. We're presently looking at Disneyland as the location. Been a laryngectomee 17 years, been volunteering in one capacity or another 16 years.

Got some busy times coming up. Next week is the ACS Great American Smokeout; I'm speaking at Santa Ana College Wednesday, and Saddleback Hospital Thursday. Did a Teens Kick-Ash rally at Dodger Stadium in L.A. not long ago, with Dr. Vernon Smythe (the laryngectomee narrator of the "Move It or Lose It!" video). And, of course, school and patient visits.

Ron

Good Times and Bad                           
By Charles Lamar <neckbreather@prodigy.net>

This past week has, for me, been some of the best and worse for me. Let me start with the best part.

For the second year in a row, I have been asked to participate in the County School System’s MRC (Making the Right Choice). This is a fully funded program and an integral part of the school program. It was started in the 2000-2001 School year and has a full time person who meets with all of the 6th grade students (approximately 850) for 30 minutes each week. Topics discussed are handling peer pressure, drugs, smoking, gangs, alcohol, fighting, and how these activities affect their lives.

The week prior to the Great American Smoke Out, the instructor goes to each class and shows films and charts which all relate to smoking and effects thereof. I was contacted last year by the ACS and the Tuscaloosa County Health Dept. to talk to the students during the week of the Great American Smoke Out. The result was one of intense satisfaction for me. I heard later that a 12 year old boy went home and told his mother that some man talked to them about not smoking and that he had smoked so much that he burned a hole in his neck.

When contacted again this year, I suggest to the instructor, that we combine as many classes as possible so that none would be missed. I will tell you that the Chattervox works. Saved the day for me since I could never have been able to talk so they could hear, had it not been for using that.

The first session on Tuesday, Nov 13th was video taped in case I could not make all of the scheduled talks, but I talked for 8 sessions which included some 13 classes for a total of 640 students. The videos were shown to three more classes and will be shown to a special education class next week for a total of about 200 more. I was truly amazed by the quality of the questions which they asked and most of them were really interested in seeing my stoma and airway. At the end of the question and answer session, they were given that opportunity.

The City School System had heard of me and my talks and they have contacted me to put this type of program on again during the Spring of the year. I met with a group of Central Office staff and have agreed to this.

Now for the bad part. For some weeks I have had a great deal of difficulty in getting a prosthesis seated in my puncture. After talking to my SLP, we decided on a "barium swallow" to see what was going on. This was done the week before I was scheduled to speak and I was given some choices to think about and discuss with the doctor. On Thursday of the same week that I was doing all of the speaking, I met with Dr. Peters and after reviewing the x-rays, it was decided to pull the prosthesis, let the puncture close, and in 6-8 weeks redo the procedure. By Friday , November 16th, I was talked out and ready to pull the plug and get on with the program. So, on Friday night, I pulled the prosthesis, cleaned around the puncture, put in a stoma button and went to sleep.

After some 7+ years of talking with the TEP, I find that I am now back to the only method of communicating with others being the EL. As I write this, early Saturday morning, the puncture has closed approximately 75% and hopefully by the end of the day will be closed completely. The worse part for me will be keeping up with the EL. Have already walked from the dining room to the computer room without it, hopefully will get better at remembering as the days and weeks pass or I'm going to be doing a lot of walking.