HEADLINES

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

distributed by American Cancer Society

Pat Sanders, Editor

February 2006
 

My Story of Survival

 Written 12/28/95  by James Posey

 

It was on this day one year ago that I became a “ Lary “ . I was at M. D .Anderson Cancer Center, Houston TX. My sister works there; that’s the only reason I was aware of that facility and its reputation as being among the best. One year earlier, I was undergoing radiation treatments in Ft Pierce, Florida, my home. I would later view the choice to stay local for radiation treatments as a mistake on my part.

 

My first indication of problems was a sore throat and very raspy voice that would not get better. I smoked 1 pack a day, or less. I also worked for 26 years for Florida Power and Light Company. My job was a Nuclear Mechanic/Certified Welder. Ft Pierce is home to St Lucie Nuclear Power Plant that’s how I wound up here with my wife, Lyn, in 1981. In 1982, my only child, Jennifer, was born; she wanted to be a nurse from the time she could speak and followed through to Graduate from the University of Florida, April of 2004, with a BSN in nursing.

 

Nuclear Mechanics do all the maintenance on the plant to include such tasks as removing and reinstalling the reactor head for refueling to rebuilding the steam turbines. Just to give you an idea the reactor head at St Lucie weighs about 150 tons. I’m the guy you saw on TV in the yellow suits on the China Syndrome. I also was a Certified Welder on Radioactive piping for over 20 yrs.

 

My problems started in March 2003, at which time my voice went away.  I had been working on some equipment that contained a substance used at the plant for hydraulic fluid.  It was known for causing voice problems if you were to breathe the fumes, which I had done, so I kind of wrote off the voice issue due to this exposure. It would get better, or so I kept telling myself. Not to be. I was one of the last old school Power Plant workers with the attitude: Damn the hazards this has to get done now. There are plenty of hazards in Power Plants. Another story for another time.

 

My wife and I were in Gainesville one weekend helping the daughter relocate, when my “almost nurse” daughter got me to the side and said,  “Dad, how long are you going to wait before you go get your voice checked out?”  It had been 3 months so when I got home I made an appointment with my local ENT, Dr Christopher Slack. That’s when I met the “scope”. Yeah!  Down the old nose into the throat and I’m sure every lary is acquainted with the “scope”. Dr Slack saw something very small he did not like on my right true vocal cord and we scheduled a biopsy ASAP. Dr Slack did not get a “positive” biopsy back. I’m a big guy, 6’2”, 230 lb, in pretty good shape, 47 yrs old, at the time. He had a difficult time getting his toys down in my throat, and I felt like some one had parked a ‘49 Buick in there for a while, sore to say the least. Several weeks later we tried again, You guessed it. This time he found a “Squamous Cell Carcinoma” on my Right True Vocal Cord. Just to be sure we sent a sample to M.D Anderson for a second read after my sister pleaded with me to come there for treatment. To have them confirm and concur with the treatment was our mutual ground.  So I started 48 Radiation Treatments at a local Oncology Center, Thanksgiving week, 2003. They ended 1st week in February, 2004. At the end I was taking liquid Morphine when it was time to eat, could not swallow pills, and did not want to tube feed. I think I lost about 15 pounds during treatment.

 

Power Plants workers are like Linemen or Firemen, Police, and Hospital employees, in that you work no matter what Holiday it is and 24/7 when needed, which is often. All the public sees are the linemen after a storm. Guess what, folks? Back at the Power Plant, were people like me so that lineman, that you saw, had some power to hook you up to after the storm. I also traveled to every plant within the FPL system, 11 in all, throughout the State. In Homestead, south of Miami, they have another Nuclear Plant, Turkey Point. I spent a lot of time there. I tell you this to give you an idea of the hours I worked for 26 years. There was a great deal of overtime, much of it away from home. So when you get down and out, as I was at this point, they don’t like to hear that you don’t feel good or “I can’t work tonight because I have treatments to go to.”

 

During the course of 2004, even after my treatments, I never really felt better. The swelling went down but my voice never recovered. Then I developed an ear ache that got progressively worse as time went on. My ENT scoped me once a month, he could not see anything, but I knew I had problems. I went to my Dentist three times in a vain attempt to find a bad tooth that might be causing my ear ache. No luck. Then September came around. Ft Pierce was ground zero for not just one, but two hurricanes: Francis (a Cat 2) and two weeks later, Jeanne (a cat 3). Direct hits, NE eye wall both times. My home plant, St Lucie Nuclear, sits out on the Barrier Island. Folks, it was bad for a lot of people here for a long time. We did not get the news coverage like Rita and Katrina but I can tell you there are still homes that have not been repaired here.

 

The island where I worked, which prior to the Hurricanes had three ways on and off, now had one, some of the time. So when the Plant got you there, they did not like to let you go. My health wasn’t too good at this point. I was in a lot of pain and could not sleep. My saving grace was the house my wife and I had “owner built” in 2002. My old home, which was built before Hurricane Andrew hit Homestead Florida in 1992 (after Andrew codes started changing here in Florida), was all but destroyed.  My wife is a construction estimator and we had built, using her connections, a new home that’s like a small bomb shelter. All to the new 2002 codes, only much better built, CBS, sealed attic, all hip metal roof, permanently mounted hurricane shutters that look like colonel shutters on all doors and windows except one steel door in garage. Once closed, and the beams go on, they are rated at 140 mph winds. No damage either storm or from Hurricane Wilma this year, another side swipe of about 110 mph winds. My property of approx 1 acre has a lot less trees on it now. Still too many, too close to the house, that need to come down. Any one with questions feel free to email me. That’s three major hurricanes in two seasons and not one Insurance claim, about 30 days total without power. I have a 10 kw generator, also. I say all this about the storms because I’m sure there are some Larys out there and/or cancer patients that have suffered or are suffering now due to these hurricanes that have been pounding everyone of late. I know Dutch evacuated Houston for Rita. That in itself is a major accomplishment as you saw on TV.

 

In November 2004, I had another biopsy done by the same ENT and found cancer again. I already knew. It was not a surprise. In the beginning of this story I mentioned about the biopsy being sent to M.D Anderson the first time around for a concurrence, well M.D. Anderson has a waiting list a mile long but since I had sent that biopsy the first time, I was considered a patient. The first week of Dec 2004, I spent at MDA being tested and diagnosed. First time T1, this time T2. We flew out to Houston the day after Christmas for the surgery. As I said earlier, Dec, 28, 2004, I had my laryngectomee surgery.

 

It went well as far as the success of the surgery, good margins, no more radiation, and no chemo. Lymph nodes all clean. The first thing I noticed when I awoke was the ear ache was gone. Thank God. Then I started trying to access what the hell they had done to me. Trach Tube tied so tight around my neck it was killing me. Then it hit me, I can’t call for the nurse. I had to bang the side of the bed to get them to loosen the string tied around my neck. Tubes coming out of my neck no one mentioned prior to surgery. I hurt like hell. The first thing I wrote was, “turn up the morphine please”. 

 

I had a puncture done at the time of surgery for TEP. I need to mention I’m allergic to Latex, the blue gloves were worn by all, none latex. I had a very difficult time with my gag reflex and the feeding tube that’s inserted through the puncture for the TEP. I tried and tried to tell the Doctors and Nurses that it was a big issue. I seemed to gag constantly on the tube, trying to regurgitate it. This is not good for someone that’s held together by thread, spit and glue at this point. Things tend to come apart that aren’t supposed to.  My wife who was staying in the Holiday Inn right down the street would not go to the hotel room for three days. My nurse daughter stayed two days and had to return to her new RN position in Ft Pierce. At MDA, they were glad she had to go. Talk about riding herd, that’s my kid all right.

 

I was having a lot of problems. Sleep was impossible. The feeding tube kept coming out of the puncture and I had to hold it most of the time. They finally put some more stitches around the stoma opening holding the tube, it helped some. I started developing fluid under my chin, a sure sign of “fistula“. They wrapped me tight with gauze and compresses to force the fluid out of where it was gathering for days. This is all an effort not to open me back up again. The main surgeon, Dr Sturgis, wanted to. The fluid seemed to be under control when they released me after around 10 days in hospital. Not to return to Florida but to the hotel room. Good thing I didn’t go far because two days later my suture line at the stoma opening just inside the stoma started gushing fluid that had built up in a pocket in my neck, and it went into my lungs. I had to invert myself while it drained. I think you get the picture, rushed back to hospital and readmitted for about two more weeks. It was decided that we would pack the fistula and hope it healed itself. Two weeks after initial surgery they don’t want to open you back up, due to most things healing together by now.

 

My Head surgeon knew what he had suspected right after surgery had come to pass. For those that are new to this group and site, I’m in no way trying to alarm you, especially if you’re pre-surgery. I was told that due to having radiation, I might run into this little problem they call a “fistula”. Radiated tissue does not heal that well and about 5 to 10 % will develop a fistula. It will heal most of the time by itself, but slowly.

 

Mine was in the worst possible spot. I was discharged again back to the hotel. Home nurse came by every day. My wife was doing the packing of the fistula, as I would not let anyone else touch me after leaving the hospital.  We started out packing about two feet of gauze in there. By the time I was discharged again, we were down to about 1 and 1/2 feet. This is a good thing; it means its healing. Went in for check up and used one foot of gauze. Ok, we really need to go back to Florida for wife’s job. Both of us felt our sanity was strained; money was getting to be an issue as we had not planned on 6 weeks in the Holiday Inn. On top of it all, we felt I would heal better at home. The TEP feeding tube had to go. There was no way, with the problems I was having with that tube, that it was going back to Ft Pierce, Florida with me, or should I say “in” me. Remember I said I was allergic to Latex?  I learned by accident, sitting in the SLP’s office looking at a packaged feeding tube like the one I had in me, that my feeding tube is made of Latex. Hmmm.

 

The Dr agreed to remove the tube, place a dummy prosthesis in the puncture, and have a peg feeding tube put in stomach. Not fun to have done but what a relief after six weeks of fighting gag reflex.  On the plane to Orlando International, I still felt like hell but I was, we were, going home. Once home I was able to get into a routine of feeding myself and walking on the treadmill. Home nurse set up to come by once a day. Wife was still packing fistula, before and after work, or I did it. Nobody else was allowed to touch me. It took almost three months for the Fistula to heal but heal it did. We got down to several inches of packing, then 1 or 2 inches, then ½ inch, then no more. The dummy prosthesis was sticking out too far so we had M.D Anderson to refer us to Moffitt Cancer Center in Tampa Florida, The SLP at Moffitt tried to change it but my puncture had healed over inside, so we allowed it to heal shut for now. I do quite well with Electro Larynx.

 

 May 5th 2005, we flew back to Houston, Dr Sturgis liked what he saw, did a dye check. You drink blue dye to see if it comes out anywhere it not supposed to. I passed. He said to return to home and in a week or so have peg feeding tube removed and resume eating normal food, brushing teeth, and drinking. Dec/28/04 till mid May 05 I had stayed on the feeding tube. Not allowed to drink or brush my teeth this whole time. Just so you know, when you don’t eat, you don’t get tooth decay. Your gums take a while to toughen up again. And I had all my dental work done prior to surgery, this is a must. Dentists don’t like patients who have had radiation treatments close to the mouth. Or ones who just had a Laryngectomee.  I had to draw a picture to convince the girl that cleans my teeth now that I cannot choke anymore.

 

At this point, I was down to about 190 lbs. I don’t recommend the diet plan. Flew back out to Houston one month later, had good check up. Dr .Sturgis said since my Local ENT was checking me once a month in Florida that he would see me in 6 months. Dec 5th 2005 had a great check up. Dr Sturgis still aware of my once a month check ups at home said I’ll see you in one year.

 

In case you’re wondering, I did not file for Work Comp, I did not want to fight about what caused my cancer, I smoked, remember. FPL had good benefits, I have a long term disability benefit through my employer, rare these days. Social Security still will not approve my disability, I’m in phase 3 Court hearing next. They say just go back to work. Even though FPL cannot allow me back. Be kind of difficult to meet OSHA rules.

 

I’ll sum this up by saying everyone of us is different. We each have a lot in common but each have our own story to tell. I volunteered to write this for Pat Wertz Sanders, I think she and all the volunteers do a great job with the Web Whispers site. Once I learned of it and started using it, WebWhispers made a difference in my knowledge and understanding of what being a “ Lary “ was all about, as well as what to look out for. Know this, no Hospital or Dr. can prepare you for what you will go through like this web site can. If you’re headed down the road to be a laryngectomee, stop by here on the way. I wished I had.

 

The message I want to send is no matter what the odds, don’t lose HOPE. Prepare for your faith and your will to be tested. I was born and raised in North Florida as a Southern Baptist. No matter what faith or religion you are or aren’t, we all have one thing in common. We all will meet our maker one day, but not this day for me. I gained from my experience the knowledge that when it is my time, I’ll be ok. Having to come to terms with your mortality at any age is tough but we all have to, at some point. I got the best Christmas present I’ve ever received in my life this year. The gift of TIME .

 

God bless each of you and Happy New year. 

James Posey   <pose7242@bellsouth.net> 

 

P.S  Thanks to my loving devoted wife, my wonderful daughter, to the Doctors and Nurses that treated and put up with me, except the nurse who poured peroxide in my stoma. You know who you are, no names needed, and a few devoted friends. Without you all, I would not have survived this ordeal.

 

My Dad’s Voice

 

My Dad, Edmund Lauder, had his surgery in 1963, when I was 10 years old. The only voice I remember is his esophageal voice. I was told that he had a good singing voice, but I don't remember it. I do know that he did not pass it down to me.  

 

He was very economical in using his speech. He did not make small talk. He spoke when necessary but rarely did he pass the phone off to my mother when he had a "difficult" listener. He was VERY proficient with communicating with the snap of a finger. When he meant business, he snapped his fingers and we (my brother, sister, and I), would jump, or else!!!  I do remember having a discussion about recordings of his voice and while there may be some recording out there, we are not aware of it. All of our home movies were silent, so the only voice we remembered was his new voice and as far back as I can recall, there was no problem with understanding him.  

 

I used to travel with my Dad when he traveled to teach esophageal speech in Texas. He was a volunteer for the American Cancer Society, back when the ACS was involved with the IAL (or vice versa). I became very familiar with the different voices that I heard; Ken Kellum, a Dallas Cadillac dealer, was one of  his best  friends and Jessie Hart, a Dallas "legend", were frequent voices that  I heard. I had no problem differentiating between their voices, even at a young age.  Father Marquez, an active Catholic priest and esophageal speaker, was a  frequent visitor to our dinner table. He amazed all of us with his discussions of the Bataan Death March, which he was part of. 

 

The point of this diatribe is: Your voice is YOUR voice even if you use an artificial larynx. Many AL users think that they sound just like anyone else who uses an artificial larynx, but that is far from true. Many times, when I answer the phone at the office, I know exactly who it is by the sound of their voice whether it be esophageal, TEP, or using the AL. I am rarely wrong.  One of the times I was wrong was a couple of years ago while watching the Super Bowl. During halftime, I was in the kitchen, probably getting a beer, when I heard a Laryngectomee voice on the TV. I said from the kitchen, "That sounds like Tom Beneventine" and I went to check it out. Actually, it was Bob Mehrman, doing a public service announcement commercial. It sounded just like Tom Beneventine. I have since realized that it was not the AL voice that threw me off, it was that Yankee accent and the fact that the pitch was almost identical. Bob is from Boston, and Tom is from New Jersey. Both are EXCELLENT communicators.  

 

I am sure that my Dad would have liked to preserve his "old" voice, but he did not lose any sleep over it. Neither did we. We adjusted and adapted. I still talk with many of his friends. Jessie Hart is still in Dallas, teaching esophageal speech to those who want to learn it. Tom Beneventine is still  wearing out Servox batteries in New Jersey. Bob Mehrman is President of  the IAL. Father Marquez and Ken Kellum are probably sharing conversation in heaven with my Dad, and I have no doubt that they are conversing using esophageal speech.

 

Jim Lauder

  

Kirklin Clinic Head & Neck Support Group Meetings
No meetings until further notice
In the interim, we suggest that you join WebWhispers if you have an email address.
We are also invited to attend an All Cancers group with a luncheon every third Tuesday.  Call or email Pat Sanders if interested.  (See below)

 

HeadLines Newsletter:
B’ham:  Pat Sanders,   205-980-8416; pat@choralmusic.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 a complete Library of Information, lists of Suppliers, the monthly newsletter, Whispers on the Web, and HeadLines.  Laryngectomees, caregivers, and professionals can meet on two different e-mail lists to exchange messages, ideas and support    This is the largest internet support group for laryngectomees and is a member club of the IAL.

WebWhispers is sponsoring an Alaskan Cruise Tour for June 1, 2006 and has just announced a Southern Caribbean cruise for Feb 28, 2007.  Info on WW Web Site – Cruise Index.

 

 

 

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  available for the IAL Annual Meeting and Voice Institute held once a year. In 2006, the location is Chicago and dates are Mid-July.  Info on their web site.