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

"Don’t Worry Dad, It’ll Be Okay!"

When I awoke I was in a hospital bed, head raised slightly, and tubes running all over me. There was still the tube in my stomach so that I could be fed, but now there were also a couple of tubes stuck in my throat and chest that was draining blood and fluids from the area into bottles attached to the tube, and tubes running into my arm bringing medication and pain killers. A larger tube brought a light mist to my throat area. I also had a device to suck the saliva from my mouth because swallowing was impossible. My laryngectomy was over, but my new life had barely begun. I would no longer be able to speak as I had. Not with my voice box surgically removed. Cancer.

There was almost no pain, but I was limited in head movement I remembered the joke about pilots fighting with swords and during a close pass, one pilot swung his sword at the head of the other, and he responded with, "Ha, you missed!" The sword wielder replied with a snarl, "Oh yeah, shake your head!"

Decapitation might be too strong of a word to describe this operation, but I had been cut open from ear to ear to remove the cancerous cells. The nurse brought me pad and pencil so that I could communicate. I had no desire for anything except for the ability to speak. My wife was there as well as some of my grown children. They all assured me that everything went fine and I was doing great. My future was unknown and full of fear. I was apprehensive. I was scared.

The next day my daughters all visited me. Michel came and went after giving me a kiss on the cheek. Rhonda sat next to the bed with me for an hour holding my hand and I treasured every moment. Jenine, my youngest daughter came, and she too, sat next to the bed and held my hand. Jenine had been having a hard time calling me Dad. My wife and I had been separated for years and had gotten back together, but Jenine had a hard time coming around. Now she sat next to me and the concern was clear on her face. I knew she loved me and I felt a tear of gratitude coming into my eyes as I thanked God for his blessings. Somehow my situation didn’t seem so bad. Jenine looked and saw the solo tear rolling down my face; squeezed my hand and said, "Don’t worry Dad, it’ll be okay." And it was then that I truly knew it would be.

Two days later I was released from the hospital and sent home. Two days after that I decided I could drive, and against the doctor’s advice, I got behind the wheel of my car. Since I couldn’t turn my head, I turned my shoulders in an effort to see what was coming. It felt good to be alive. Two weeks later I returned to work as Promotion Manager of a local nightclub. And today, still bright in my memory, and always sure to bring a smile to my face are the words that brought me so much comfort, "Don’t worry Dad, it’ll be okay."

Vance Redden (vancer@ev1.net)

SOME TEP PROBLEMS– Advice from the doctor

Your TEP is in a real dynamic piece of anatomy. The site constantly moves with swallowing and breathing. The area is manipulated with your finger or thumb when you use your prosthesis. In addition, there is the issue of constant bacterial and fungal soilage from the organisms that live normally in your saliva and sputum all of the time. So with all this going on, it is no small wonder that things happen to the fistula (puncture) which can affect your ability to successfully use it.

The most common problem that we see with the TEP is failure to properly seat the prosthesis in the fistula. The inner flange does not engage the inside of the esophagus so the tract closes over it on the inside, the esophageal side, even though it looks like everything is fine on the outside. If caught early enough we can often re-establish the opening in the office. Otherwise, we have go back to the operating room for a re-puncture. So always check your ability to make a voice a few times after changing your prosthesis. If this changes several hours later you are likely dealing with a mal-positioned prosthesis. Try to reposition it yourself and even use your dilator if you are comfortable with it. If you are still having trouble, contact your MD or speech pathologist for help right away.

Because there is constant motion and intermittent manipulation, the position and angle of the tract can change over time. We have seen fistulas that actually migrate up and out of the stoma! The tract can change its angle and many times ends up pointing upwards towards your mouth. Changes in the angle usually lead to leakage through the prosthesis and the fistula. Although it may be possible to "re-train" the angle of the fistula by using a red rubber catheter taped on the top side of your stoma, these problems usually require a re-puncture to achieve optimal results.

The last issue I would like to address is the problem of granulation tissue developing around the fistula. This almost always happens on the tracheal side and is caused by manipulation, irritation, and bacterial contamination. It can hamper your ability to accurately place and position your prosthesis and can be a source of bothersome bleeding. This problem is generally handled with local excision in the office using a small hand held laser or a cautery.

Checking your TEP should be a routine part of your follow up cancer surveillance each time you go to your head and neck surgeon. You should also periodically check it for problems as things that are caught early generally have simple solutions and do not require trips back to the OR for repeat puncture.

Glenn E. Peters, M.D. , F.A.C.S.
Director, Division of Otolaryngology - Head and Neck Surgery
University of Alabama at Birmingham,
Birmingham, Alabama, USA

Keeping the Candle Burning                             by David Blevins

A lit candle is placed in the window to show the way home. It is an old image and metaphor, but it has such power that it has survived into modern times as, "we’ll keep the light on for you". It is a symbol for guidance, for caring, for shelter, and for welcome.

It does not take an army of people to light that candle and keep one in the window. It really only takes one. But the one who lights it must be faithful to this small chore, and must also arrange for the candle to continue to be lit as a guide and welcome when they are no longer there to light it. If the candle is to not go out, we have to arrange for continuity after we are gone since, as far as we can tell, the light will always be needed.

Laryngectomee support groups are like that.

I thought more on this topic when I read as many back issues of the IAL News as I had been given and collected as editor. I was struck by announcements that a laryngectomee support group had been established in, for example, Birmingham or Montgomery, Alabama, only to eventually fade away. But then there would be a new announcement of a group being established in the same city, but by different people. I saw that, for some, there have been at least three phases of establishment, disappearance, and re-creation in the 50 year lifespan of the IAL News.

I also read about some groups which had been in continuous existence even prior to the creation of the IAL in 1952. These were groups in larger cities such as Boston, St. Louis, Detroit, and others. Here too, a light analogy occurred to me. It was as if some lights had come on and burned continuously in these places. While in other places the light would come on and burn brightly for a time, but then flicker out, only to be lit again later by someone else who recognized their own need for such a light, and the need of others for one.

And then I read this in an old issue of the News:

"The (Rehabilitation) Committee believes that a large attendance roll is not the ultimate goal of a club. It is better that each patient be fully rehabilitated, and if he is willing to re-enter the milieu of his former friends and society and no longer attend meetings, the committee should consider that its work has been well done. However, it is easier to receive than to give; hence, a laryngectomee should be reminded that the future laryngectomees need the same encouragement that was given to him. " (IAL News , February, 1967).

I must admit that I am often disappointing to go to a support meeting and have only a few people show up. But I need to remind myself that this could well be a good sign that our local laryngectomees are well rehabilitated and back in the mainstream of their pre-laryngectomy lives. This is, of course, what the goal of "total rehabilitation of laryngectomees" is all about---that being a laryngectomee is such a small part of their lives that they no longer need to focus on it. They are just too busy living their lives.

But we do need to find our successors. And certainly a way to do this is to make sure we are getting the message out of our existence to local ENTs and SLPs so that we might touch base in some way with each new laryngectomee in our communities. Even in cities and towns with strong support groups, occasionally one individual will still fall through the cracks.

And we need to reach out to those who should become our successors. And we need to involve these people in our visits with new laryngectomees and their families. When they see despair replaced by hope as a laryngectomee makes his first sound, or a dramatically improved one, or that look on a family member’s face which says "he IS going to live, and talk again---I believe it now," they will become as "hooked" as we are in being a part of this ongoing miracle. Such is the way candle lighters are sustained.

In a group of 50 laryngectomees there might only be one or two who will feel the call to become a candle lighter. But we must find them. For as long as there is someone who must become a laryngectomee, there is a need for those who would put a candle in the window to welcome and guide them to a place of warmth, understanding, acceptance, and hope.

Would you like to learn to light the candle? Come with me and I will show you how.

David Blevins David6511@aol.com

[Editor's note. When it comes to support groups, David knows what he is talking about. He is Editor of three newsletters, the IAL News, the WebWhispers Journal and his local support group's New Voices. He also serves on the Board of Directors of the IAL.]