HEADLINES

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

distributed by American Cancer Society

Pat Sanders, Editor

May 2003

 

 

Esophageal Self-Dilation      Ronald J. Neubert  <rneubert@csonline.net>

 

After my laryngectomy, done at UPMC Montifore in Pitts, PA in June of 2000, I had to have two 5 day sessions of chemo and 30 radiation treatments. The radiation treatments left me with a sore and narrow throat opening. My eating was limited to liquids. I tolerated this for about 6 more months and then I asked my ENT to get me back to eating solid food again.

 

He made an appointment with another doctor in the throat institute, who works in the swallowing clinic.  Dr Carrau ran a series of tests and told me my throat had shrunk to less than a 1/4 diameter. He scheduled me to have my throat stretched. I asked if he would do it in his office. He said he would have to do it in an operating room.

 

I went into the operating room around 9:00am and went home around 1:00pm (actually arrived at the hospital around 6:00am as scheduled. Same old story, hurry up and wait!).I was able to eat right away but the throat shrunk back down over the next few day's. The first dilation only lasted about 5 days and the 2nd one, about three weeks later, was the same. He then suggested I stretch it myself. He felt   I had a low "gag factor" which should help. I must admit that I wasn't “real” enthused.  Initially, I got to thinking about him having to put me out to stretch my throat and wondered how I was supposed to accomplish this procedure myself without being anesthetized.

 

He ordered the "bougie" and called me when it came in. The bougie is a tapered rubber-like shaft filled with tungsten. It is approx. 30" long and about 1/2" in diameter. He went through the procedure that I was to use when I got home. I would take a tsp of Roxicet about 1/2 hour before I was to insert the bougie,  Then I would take about a tbls of Lidocaine and let it lay in the back of my throat for about 10 minutes before.  I would coat the bougie with more Lidocaine and proceed to insert it. (It is possible to use K-Y for this part since the throat is already coated with Lidocaine). I usually do it over the bathroom sink as the Lidocaine drips off the bougie as it is being inserted and I use a half paper towel to wrap around the end to catch the excess. I assumed the standing position of a sword swallower (you will find a comfortable position as you continue the insertions) and started to insert the bougie, gently pushing and twisting until the 30cm mark (about 12") on the bougie was reached. Over the course of the last 24 months I only started to gag a few times. I would just swallow several times and everything was alright. I would leave it in for about 15 to 20 mins. The Dr had told me only 10 mins but I thought as long as it was in there, I'd leave it in the extra time. This procedure would be repeated daily. I eventually went to every other day as my throat was still tender, then to 3 times a week, easier to keep track of. I'm presently doing it weekly which seems to be working just fine (I went to every two weeks but I'm wondering if I might be asking for trouble). I tried this procedure about 1 1/2 hrs after I ate one time to see what would happen. Nothing! Everything stayed down. The only pain involved is the initial stretch upon insertion which only lasts a few seconds. Once it is inserted, there is no more pain.  Dr. Carrau never gave me any timetable as to how long I would have to do this, only that the scar tissue was very hard to stretch.

 

I would recommend this procedure to anyone who needs it. I sit at my computer and catch up on my email during the stretching period. You get used to it and it has enabled me to eat anything I want to.

 

The thing that seems to bother most people, even friends of mine with no medical problems, is the thought of putting something down your throat. I was told recently of a lady lary who weighs around ninety lbs and exists on liquids. She has her throat stretched every 6 months when she can no longer swallow. Some might say that she should get it stretched more often in the hospital but I saw a copy of my bill. It was a little over $7000 for the hospital per visit (outpatient). I don't know what the doctor charged. I don't think the insurance companies would pay for too many of these given the fact it lasts such a short period.     

 

I guess that I felt that after losing my voice and part of my lung, the bougie was a piece of cake and was my road to good eating again. If there are any questions, please feel free to contact me.

 

 

My Big Fat Annual Checkup                                   by Rick Rivenbark

 

(Author's note: The following tale may stretch the truth a bit, but in no way shatters it.  All of these events actually did happen, or could have happened, at one time or another.  Also, my opinions are only my own, and certainly subject to my biases, experience-based though they be.  Finally, I am actually pretty grateful that the physicians and others have been around to save my hide so I can write such scurrilous stuff about them.)

 

Being a two time throat cancer survivor, every year I dutifully head to Birmingham's Southside and the maze known as UAB Hospitals for my annual post-operative checkup.  Specifically, I am going to Kirklin Clinic, which occupies the space once populated by some of my favorite stores and restaurants.  After more than 15 years of coming here I am still not sure I wouldn't rather have the former tenants back again.  It is not that Kirklin is not a "good thing", it is just that it is part of the University of Alabama at Birmingham, and UAB should never have been built where it is. It started as a couple of buildings, but now has become the kudzu of Southside Birmingham, putting out tentacles in the form of new buildings and streets.  I long ago learned to expect to see a street blocked every time I go into this part of town. Whoever has the street paving concession for this area has a lifetime of income.  I doubt if any street around here lasts 5 years before being dug up and replaced, and I imagine scores of unwary motor vehicles and pedestrians buried where they fell, to be discovered again during the next excavation. Some of the closed streets never reopen to general traffic and the next time you try to use that street, you are headed into the front door of a new building. UAB is the tail that wags Birmingham's urban planning, and their goal is apparently to seal off most of the streets in the area for their exclusive use.

I eventually make my way to the parking deck.  Actually it should be called the driving deck, because you are lucky indeed if you can find a parking space without having to cruise through every level at least once.  I have seriously considered hiring someone to just drive around in here while I slip out for my appointment, but very few people would want to spend their day like that.

 

Having navigated that hurdle, I make my way to the 4th floor, only to realize that I have again gone to the wrong place.  After all these years, my mind still refuses to remember the correct floor.  I wonder what Dr. Freud would make of that?  Eventually I arrive at Otolaryngology on floor 5 and the staff goes through their usual act of not pronouncing  my name correctly.  I stopped correcting them a long time ago. The wait in the outer sanctum is actually not too long, and I have a fool's hope that the nurse really means it this time when she ushers me into the exam room and assures me "The doctor will be with you in a minute."

 

I eventually pick up a news magazine and am about halfway through an article on the war with Iraq before I realize it is about the other war with Iraq, by the other  President Bush.  One day I will learn to look at the dates on hospital literature before I read it.  I briefly consider stealing this copy, thinking it may be an antique collectible by now, but my physician enters and cheerily asks me how I am doing.

 

Being still a bit disgruntled about my day up until now, I want to inform him that it his job to tell me how I am doing, but I keep my sarcasm to myself and just say "Fine as frog's hair, doc." 

 

After a quick check around my neck and mouth he begins the serious torture.  Using a gauze pad in his hand for better traction, he reaches into my mouth, yanks my tongue out about a foot, and then says "Say EEEEEE!", using a high pitched voice.  I know he must be aware that, since my partial laryngectomy, I can't even say EEEEEE in a high voice when my tongue is in its natural position, but I dutifully try and manage a somewhat gutteral EHHhhh.  "Good!" he exclaims.  He seems to be easy to please.

 

Next, he brings out an atomizer, which looks rather like an old time perfume sprayer.  I imagine this as being made by the same company that used to make the perfume accessory and is their bid to stay alive when their original product lost favor in the market.  "This will taste sorta bad", he warns me, as he shoots some up each nostril. Having become addicted to it from about 20 years of annual use, I eagerly sniff it down in spite of the fact that I know he is right about the taste.

 

After giving me a few moments for the anesthetic to work, during which time he runs off to torture some other, perhaps more naive soul, he returns for the coup de grace.  Taking a long tube which obviously expands to several times its apparent size once it is inserted into my nasal cavity, he proceeds up the right side of my nose a little way before backing out and turning to the left nostril.  Probably too many boogers in that side, I think.  I have a chronic nasal allergic condition, and several physicians have commented on the "boggy" terrain up there.

 

He pushes the tube in a few feet, examines the topography, then repeats the routine until he reaches what feels like my large intestine.  I wonder if he is licensed to practice proctology too, a sort of entrance and exit expert, but my somewhat scatological fantasy is interrupted when he hoists the tube out of my depths and says "Looks good. See you next year."

 

I utter a truly sincere "Thanks, doc," and make my way out, cavalierly flashing my Medicare card at the payment clerk as I walk by.  Ain't socialized medicine grand!? 

 

 

Magnificent Vision                           By Jack Henslee  jhenslee@comcast.net

 

Rehabilitation can mean many things to many people. It starts with the basics of simple body functions and runs through the gamut of various physical, emotional, mental and the often-overlooked social functions that most people consider normal.

 

The goal of The International Association of Laryngectomees (IAL) is to provide total rehabilitation to laryngectomees and work with others in the search for cancer prevention and a cure.  This organization was formed more than 50 years ago for those laryngectomees who lost their vocal chords due to cancer and now has a membership of over 200 support groups and clubs.

 

One of the newest and largest of these clubs is WebWhispers, which is an Internet based support group located in the hearts and minds of laryngectomees, speech pathologists, doctors and caregivers. The club's cyberspace address is www.webwhispers.org.  The command post is located and operated in El Lago, TX by the founder of the group, David “Dutch” Helms, a retired Air Force pilot. Dutch became a laryngectomee in 1994, and created his “Cancer of The Larynx” web page along with a rudimentary email system that allowed laryngectomees to communicate with each other and speech or medical professionals. The members of this group formed WebWhispers and, in 1999, joined the IAL as the first and only Internet based club with a membership of near 500, which has now grown to near 1,000 members that communicate via a sophisticated List Server system.

 

In July 2002, the IAL conducted its 51st Annual Meeting and Voice Institute in Vancouver, BC, which happens to be the home of the current WebWhispers president, Murray Allan. Since Vancouver is the primary starting point for Alaska cruises, Pat Wertz Sanders, Vice President of WebWhispers, and a laryngectomee from Birmingham, AL, organized a cruise scheduled to follow the IAL meeting. There were a surprising 117 reservations.

 

Imagine, cancer survivor laryngectomees, their families, and world renowned speech pathologists such as Drs. Ed Stone and Shirley Salmon, sharing in not only the success of our survival, but the accomplishment of speech restoration.  More importantly, this  demonstrates the courage to re-enter the mainstream of life with a hole in your neck, and using speech that always draws attention as people look around for “that strange sound.”

 

The act of mingling with 2,000 other passengers on a cruise ship was a big challenge to some, while others had learned to take large group socializing in stride long ago. Imagine yourself as a laryngectomee who speaks with a machine that when pressed against your neck transmits a buzzing sound into your mouth to be converted into mechanical speech. Picture yourself as a person breathing through a stoma in their neck, who may have major tissue loss from neck dissections or massive visible scaring. Picture others, who speak quietly by vibrating their esophagus to create a sound. Then, think about how difficult it is for “normal” people to effectively communicate on a cruise ship where the majority of the crew use English as a second language and many of the passengers speak little English. The difficulties you imagine are magnified many times over for the laryngectomee.

 

Our selected carriage for this phase of our survival and rehabilitation was a Royal Caribbean Lines vessel aptly named the “Vision of the Seas.” What a great name for the ship that would carry us forward in search of our dreams and the commitment to full recovery.

 

We still have many choices in life and the pleasures of the world are not behind us. Cancer cannot and will not rule of lives. What a fascinating sight to stand on deck and watch the magnificent scenery of British Columbia and Alaska drift by like visions of pure, unspoiled promise.  The beauty of porpoise dancing in the waves as they inspected these strange visitors, and the elegance of bald eagles flying overhead as the clean ocean air washed away fears and doubts that life may not be as wonderful as it once was. Seeing the awesome size of Hubbard Glacier surrounded by lazy ice flows, which was followed several days later by the majestic beauty of Misty Fjords and the huge cliffs that rise as much a 3,000 feet straight up, brought into perspective how small we really are.

 

Yes we have lost a lot. We have suffered the pain of silence, the anger of loss, and the self-doubt born from now being different. But we have also found the courage to face life once again and find beauty and self worth despite the anguish of the past. Now we have sailed our own Vision of The Sea. We have seen and lived life’s continuing beauty and promise and we know that we are a part of it..  

 

 

Come Cruisin’ with Us This Year

 

For the people who might be interested in going cruising with laryngectomees and other cancer survivors, we are extending an invitation to join us on WebWhispers’ 3rd annual cruise. While this cruise is sponsored by WebWhispers.org, it is by no means limited to our membership. We invite you, your families, and friends to join us. 

 

On November 8, 2003, we will be on Royal Caribbean's Navigator of the Seas and headed out of Port of Miami for a week in the Eastern Caribbean. For those who have Internet access, our web site is http://webwhispers.org/pages/WWCruise03_1.htm and all of the details of the cruise are on there, including itinerary, prices, cabin descriptions, photos, deck plans, and a listing of all who deposits paid up to now.  This ship was just launched a few months ago and is one of the most fabulous afloat with more activities than one person can get to and the deck chairs are there for those who want to just rest and relax.  We do have dinner seating for our group so that we all have dinner together in the dining room, but there are many other choices for breakfast, lunch, or dinner.

 

We have about 60 people who have made reservations (currently there are 24 laryngectomees). We watch for special reductions in prices and if prices are reduced by Royal Caribbean, you would benefit.  These are current prices for double occupancy; many of them are well below what Royal Caribbean is advertising.

Inside $ 720

Ocean View $ 799

Balcony $ 969 staterooms

C Suites $1299  suites

Deposit is $25 per person ($50 per cabin) with balance of deposit due by June 1, 2003. For suites and assigned staterooms, full deposit of $250 ($500 per cabin) required now.

 

As cruise coordinator, I will be glad to answer your questions, but send the deposits to Peggy at Cruise Vacations. She and her husband Don will be joining us on the cruise again.  We will have special prices on tours and several get-togethers for our group. We have several professionals who have made plans to go and we are setting up a seminar for our group as an opportunity to learn, ask questions, and have some personal attention to your questions.  We would love to have you along and we will be there to watch after each other.  To make reservations or to ask questions, this is the contact information for our agent. We will be glad to hear from you.

Contact:

Peggy Byron, Cruise Vacations

100 Swan Lake Circle

Birmingham, AL 35242

1-205-995-0036, 1-800-844-5785, FAX 1-205-995-2063

 

Pat Sanders  pat@choralmusic.com