HEADLINES

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

distributed by American Cancer Society

Pat Sanders, Editor

November 2003 
 

"Ribbet, Ribbet"
Beware those radiation treatments!


It's funny how something can happen that will bring back memories just like it was yesterday, but that's what happened when a friend of mine was informed that he was going to have to undergo radiation due to cancer of the larynx.  It wasn't long before he came to me with questions.  He wanted to know what he was going to go through and how it would affect him, so I began to tell my story, hesitantly, because some of this is simply, very personal.

I remember when I began the radiation treatments. They fit the facemask the first day and told me to come back.  They explained that the mask was to hold my head still during the treatment and also tell them exactly where to point the radiation as to get the cancer and not the surrounding tissue.  That sounded pretty smart to me, so I allowed them to continue.  I wondered what the radiation would do to me and it worried me so much that I went home and lit up another cigarette.  What the hell, it was too late to stop now, right?

They set me up for a once a day radiation treatment and the first day I went I was introduced to about four other people there at the same time for the same thing.  Although the cancer was in other places on the body, everybody felt a kind of kinship.  We were brothers and sisters.  Some of us were fearless, as was Judy, an older person that was full of joy, regardless of her circumstances, and she refused to let the treatments get her down.  Others hid their fear with some success.  Others were noticeably more somber with the thought of radiation.  Bob was one of those. He showed up with his wife every day and leaned on her for support.  He rarely spoke. An introvert.  His cancer was a lot lower than mine, he was in some pain, and while my voice was affected, his affectation was somewhat more private.  I allowed him some leeway since he wasn't too keen on talking about his affliction.  But he gave me what encouragement he could muster up, and when it came my turn, he waved at me, as if he was waving a last goodbye to someone on his  way to the hangman's noose.  I wasn't too concerned the first day, but I had no idea what was to come.

They gave me daily treatments for a few weeks (I forget how many, now), and every day I brought stories of my exploits back to the waiting room and Bob.  I really wanted to cheer him up.  Bob soon became expectant of my ridiculous stories, and his wife had to turn her head at times.  Even the nurses seemed to enjoy the banter, even though this was grave stuff. 

One morning I told Bob and the group of the first change in my lifestyle due to the radiation treatments.  I had been out on the patio when my wife opened the door looking for me to tell me that breakfast was ready, but she looked right at me and didn't see me, shutting the door and going back in, hollering my name.  I was astonished and immediately realized that I had been leaning on a tree, and had changed colors like a chameleon, thereby becoming almost invisible to the human eye.  It was shocking, but I soon managed to learn to control it when I was around people. Bob was very interested in this turn of events and his wife said she looked forward to the day when Bob would disappear.  (She was smiling when she said it.)

The first negative thing to happen (as I explained to Bob and the rest of the group) was when the hair on my legs began to fall out and the guy next door began looking at me with something like admiration in his eyes, and he explained to me that his wife never shaved her legs.  That was nerve-racking, but I began wearing long pants when I went outside, and that took care of that.

After a few weeks, the burned area on my throat sagged considerably and I began making new sounds when I coughed. When I arrived one morning at the waiting room, Bob greeted me with a smiling hello. "Ribbet - Ribbet," I answered!  That brought a small smile to the room.  I began to be a little more concerned.  Bob continued to listen to my stories without comment.  But it all came together for Bob and I when at last he opened up, and when I arrived at the waiting room, he couldn't wait to tell his first and last story. 

It seems that he and his wife had some neighbors over for a weekend barbeque in his backyard.  Everything seemed to be going fine, but Bob had a little wine and began feeling his oats.  He was relaxed and sitting at a table with about four others when a fly sat down on the far end of the table and landed on a piece of bread.  Without thinking (according to Bob), he frowned, and his tongue flicked out over a distance of three and one-half feet and snatched that fly right off the top of the bread without even touching it, and just rerolled back up in his mouth as if it were commonplace.  Bob explained that everybody saw it and a couple of the lady guests of his wife began looking at him sort of funny and that was when she told everybody to go home and has refused to have another party until this radiation stuff was all over and back to normal.  By now Bob's wife is having some sort of fit and she's holding her side, and blushing to beat all, and we called for a nurse.  I had no idea that this radiation stuff could be so much fun!

Well, let me tell you, I couldn't top that, so I just stopped going back for the treatments.  They were over with anyway, and the burn spot was larger than ever, and I had finally quit smoking.  It was one experience I'll never forget, especially the thought of Bob and his lizard-like tongue snatching flies at great distances.  It's a picture I just can't quite get out of my mind.

Vance Redden
vancer@b-ist.com

Dating and Relationships                                    By Debi Austin

 

No matter what the situation, a relationship can be a test from time to time, even the couples that have spent many wonderful years together, but those of us that found ourselves struggling with new ones before or after our surgeries have different problems. 

 

I was 42 and single when I had my surgery.  Working in the Communications Industry.  Dating a nice young man that went through the shock and reality of surgery with me.  He was completely wonderful during my hospital stay and home stay.  The first outing with my speech aid sent him over the edge.  The looks from the general public were a bit too much for him.  In the past 10 years since this, I have learned a bit more compassion than I had at the time but I still do not answer his calls or his letters.  That was his loss.  It did however put me in a whole new mind set, and for that I thank him, just not in person.

 

There I was, a short little fat lady with a warped attitude, a cartoon voice, and I was single.  You don't see many ads in the personal columns looking for someone like this.  I worked in a large office and my best friend, who was also my boss, made sure that if I had to have an escort, one was always available for me.  When I had to travel, my secretary was always allowed to travel with me.  Big deal.  This was not a quite candle light dinner and dancing, or snuggled up in front of a fire.  There were no whispered sweet nothings with a CooperRand.  Not to mention that never spoken question, "Why would they be dating a potential medical disaster?"  (I also have emphysema.)  While my professional self esteem was intact, the personal part was in the pits.

 

I dated a few times and always felt worse when I got home.  Not because of anything that was said or done.  But more for what was not said or did not happen.  What was I lacking at this point, besides my voice?  Losing a voice is not a loss of all communication, only one form.  I had fallen into the trap!  The sound of my voice was not the window to my soul!  My problem was just that, mine.  My solution had to be just that, mine.

 

I started to collect music for all occasions.  If I could not find what I wanted on one CD or tape, I copied, patched and made my own.  Many things I could not say to capture a mood,  I could find music to set a scene and work from there.  We are more than the sound of our voices, much more.  The test is finding our own way through the situation.

 

In the past 10 years I have learned esophageal speech, but again, that can be a test at times.  A companion of many years once said that after I learned a new form of speech I was never quiet.  Of course, I don't remember being quiet with my speech aid.  I learned that Tony Bennet's "Love Songs" were great for dinners and snuggling.  Important things were said face to face, sighs, tender touches and kisses were enough in other situations.  Rethinking the "needs" and the places to discuss these needs were sometimes more important.  A great back massage could take the place of mindless chit-chat, and tenderness was more important than many conversations.  Actions ARE louder than words.

 

We are not the only ones going through trauma.  This is a very confusing emotional roller coaster for everyone in our lives.  And I'd be lying if I said I did not develop some attitudes about how I was treated.  For instance, my laryngectomy did not make me disabled, it gave me a slight disability.  I did not survive the big "C",  I survived cancer.  I am not speechless, I speak differently.  I am not helpless although I may be hopeless on certain subjects from time to time.  And I did not become stubborn and opinionated after my surgery; I was born with those traits, thank you very much.

 

Peanut butter or chocolate may shut me up but not for long.  Touching is more important than not.  The place you say the important stuff in a relationship is not as important as saying it.  Being unhappy is not a way of life; it is an obstacle and should be treated as such.  You do not have to suffer with depression since there are answers and medications to get you through rough times.  You are not lacking "something" because you need some help from time to time.  All the answers to all the questions are floating out there in the universe. The trick is learning how to ask the question, and recognizing the answer.

 

I am now dating a man entirely too young for me and having the time of my life.  To be truthful, years ago this would not have been this much fun.  I had to rediscover who I was once I started this new adventure.  With the help of such groups as the CAL, the New Voice Club of the Valleys, WebWhispers and the IAL, I found that every person on this planet has value and something to offer and share.  We just have to be able to put it to our best use.  We are all very unique people, but besides being laryngectomees, we are a gift to the world and the sooner we recognize our own value, the sooner we can make our lives work for us and others.

 

Over the years I have read e-mails and cried for what these people were dealing with and going through.  But they were not crying, they were teaching us in the best way possible, as survivors.  They helped each of us write our own book on personal survival.  That is what support is, learning, teaching and holding hands.  You do not have to be alone, that is a choice.

 

 

ONCE BITTEN – TWICE SHY                                 by Pat Sanders

 

Cancer survivors have something in common that others around us notice. We are aware of our bodies and the slightest change in them.  A friend called this the hangnail syndrome.  She said, “If we survivors get a hangnail, we check it to see if it is getting bigger and worry that it could be a new kind of cancer or an indication of an old one returning.”   We are not hypochondriacs, but we do notice every new bump, lump, or sore. Wisely so.

 

Sometimes we even know how we got them but temporarily forget.  I pinched the inside of my lip with my new Sonicare tooth brush.  Didn’t think a thing about it, but several days later, I happen to notice a dark spot where there had not been one, right in the corner of my mouth.  For just a second, I caught my breath and my heart skipped a beat. Then I looked it over well so I would remember what it looked like so I could see if it got bigger overnight.  It was another day or so before I used my Sonicare in the same way, pulled my lip over to the side to get behind my back teeth and realized what I had done.

 

We don’t need to feel foolish that we were scared for no reason.  Anyone who has been around cancer knows that early detection is very important and that many times, it is a life saver.

 

Let’s look at some of the ways you can try to stay ahead of ‘Head and Neck’ type cancers. Most of the symptoms, that indicate something is not right, are persistent, lasting longer than just a few days.  Before the larynx is removed, one of the most common symptoms of vocal cord problems is hoarseness and one symptom of any throat cancer can be difficulty swallowing.  Both of those things have changed for total laryngectomees since there are no vocal cords remaining and many of us have at least some difficulties with normal swallowing.  But we can still look out for persistent pain in the throat or ears and check for a swelling or a lump in the neck or face where there hasn’t been one before.  If any of these symptoms persist two weeks or longer, let your doctor take a look.

 

Oral cancers account for nearly half of all head and neck cancers and the most common symptoms are sores in the mouth area or patches of either red or white which might be precursors to cancer. Leukoplakia (white lesions) and Erythroplakia (red lesions) that do not heal or disappear in 2 weeks should be evaluated by a physician and considered for biopsy. Spotting problems in the mouth is another good reason for your regular dental checkups other than just checking on your dental condition. It is probably smart to space out your dental and ENT appointments since they both look in the mouth and you are getting that area checked more regularly than if you run all of your yearly appointments at the same time. A lary friend’s dentist found leukoplakia on the roof of his mouth and he went in for a check and a biopsy, where they removed it because it is a pre-cancerous condition.  He is fine and dodged the bullet of cancer that might have been headed in his direction.  Another friend, a non-lary, got to the ENT doctor in time with leukoplakia on her vocal cords.  She immediately stopped smoking, temporarily stopped all drinking of anything alcoholic, started taking acid reflux meds, and went on voice rest.  She stuck to it and 6 weeks later, the doc said he couldn’t believe how well that had cleared up but she was going to have to live by the new rules to keep it that way.

 

Lung cancers found at an early stage are usually discovered by lung x-rays or other tests so don’t miss your yearly x-ray.  There has been a study running for a few years comparing the early detection of the spiral CT to the x-ray.  The spiral CT has been coming out on top in early reports but you may find it not covered by insurance for diagnostic purposes.  Hopefully that will change.  Many of the symptoms of lung cancer are common to other respiratory diseases but if you have bronchitis or pneumonia often, keep a close check on the lungs.  Coughing up blood from the lungs (remember we laryngectomees tend to get a dry trachea in the Winter and have little broken capillaries that can give us some blood in the mucus), constant chest pain, coughing that continues and gets worse and wheezing are all symptoms to get yourself in to be checked. 

 

Remember early detection makes a difference so keep checking yourself for any signs that need to be evaluated.

 

 

Kirklin Clinic Head & Neck Support Group Meetings
First Thursday of each month,
Next Meeting November 6,  2003  10:15AM – 11:45AM

Please come!

Kirklin Clinic, Fourth Floor Conference Room (Down hall by elevator)
Bring parking ticket from Kirklin Deck for free parking stamp

 

HeadLines Newsletter:
B’ham:  Pat Sanders,   205-980-8416; pat@choralmusic.com
Tuscaloosa: Charles Lamar,  205-758-1176; neckbreather@prodigy.com

                                                                                                                                                           

Kirklin Clinic Otolaryngology :        205-801-8456 FAX
Glenn E. Peters, M.D.       Glenn.Peters@ccc.uab.edu
William Carroll, M.D.           william.carroll@ccc.uab.edu
Nancy Lewis McColloch, Speech Pathologist ;  205-801-8460;  nlewis@uabmc.edu

 

 

For cancer information call 800.ACS.2345 or visit our Web site at www.cancer.org

American Cancer Society in Birmingham:   nprice@cancer.org

                                   

WEBWHISPERS - INTERNET SUPPORT GROUP FOR LARYNGECTOMEES  http://webwhispers.org  is a site with helpful information on what to do before and after a laryngectomy. It includes educational sections on larynx cancer as well as sections with Helpful Hints, lists of Suppliers, a monthly Journal, and Humor.  Laryngectomees, caregivers, and professionals can meet on two different e-mail lists to exchange messages, ideas and support   In addition, there is a forum with message boards for social interaction.  This is the largest internet support group for laryngectomees and is a member club of the IAL

LISTSERV FOR LARYNX CANCER A listserv with exchange of e-mails relating to larynx cancer. http://listserv.acor.org/archives/larynx-c.html  to join or leave the list

A Laryngectomee site from the United Kingdom    http://www.laryngectomees.inuk.com  presents information from all over the world and HeadLines newsletter is carried on their site under Letters from America. They have all HeadLines since 1997

The Official site of the International Association of Laryngectomees http://www.larynxlink.com  has all of the current information on the IAL, plus many newsletters from all over the US (including HeadLines for the last two years).  Information is always available for the IAL Annual Meeting and Voice Institute held once a year.