Kirklin Clinic Head & Neck Cancer Support Group, Birmingham, AL
distributed by American Cancer Society
Pat Sanders, Editor
Newbie by Dave Ross, Edgewater, FL
When Pat asked if I would tell the story of my journey into the Land of Laryngectomy, I asked if she wanted the short and to the point or an expanded version. She said go with the expanded version, which I hope she has edited down because I have a tendency to get side tracked when left to talk without being muffled -- at least that’s what my wife Pat tells me and I guess after forty-seven years of being married to me she should know.
I actually became a Lary April 8, 2005 at Shands Medical Center, University of Florida, Gainesville, FL, but my journey to that operating room began more than a half century prior to that beautiful Florida spring day. I was born in 1937 and raised in Tennessee, which was (is) about the third largest tobacco producing state. From the time I was ten or eleven years old, I worked after school delivering newspapers or bagging groceries in the local supermarket which afforded me the pocket money to buy cigarettes and thus began my saga of becoming a three time cancer survivor. I quickly became addicted and, even though there was NEVER any smoking or alcohol use in our home, I became a heavy (one to two packs a day) smoker for the next fifty years.
As I’m sure most of you my age will agree, the next few decades seemed like an eternity at the time -- now it just seems like a few fainting flashes of my ageing memory. For me, it was mostly good times; high school, college, meeting and marrying at a very young age (at least by today’s standards) the only love of my lie, my wife Pat, then the Army, raising three great children who have given us our wonderful grandchildren and great-grandchildren, and all this while moving around the country quite a bit in pursuit my career in the sign industry. But we found Florida, fell in love with it and settle here. All the while, burning up one, two, sometimes three packs of cigarettes a day. I figure I have consumed at least one-half BILLION cigarettes in my life, but it never seemed to cause me any problems and even when public awareness of the dangers came to the forefront, my stubbornness allowed me the privilege of self denial of the probable consequences. This brings me to the next milestone in my journey to the Land of Larys.
In 1997, while having an annual routine physical I requested a chest x-ray, to which my doctor asked if I was experiencing chest pain or breathing problems. I said no, but being a heavy smoker I thought it would be appropriate since it had been about five years since my last one. He agreed and as a result a small (less than 25 mm) tumor was found, a biopsy was inconclusive, but in that the biopsy did NOT indicate benign tissue a lobectomy was recommended, I agreed and had surgery Friday, June 27, 1997. I went by the surgeon’s office Thursday afternoon for a final pre-op consultation and after leaving his office SMOKED MY LAST EVER CIGARETTE!!!
I had an absolutely fantastic recovery from my lung surgery with no recurrence or other troubling side effects and the next five years were medically uneventful and knowing that I had given up the smoking habit gave me the sense that I was cured of the cancer most certainly brought on by that half century of enjoying the taste and feel of nicotine and the blackened lungs I had received from the smoke tars. I felt as if I would live to be a hundred and was looking forward to my scheduled retirement in June of 2002. But the continuing effects of all that good smoke had other plans for me. In early 2002 I developed a hoarseness which my family doctor attributed to acid reflux (from which I had suffered for decades) and started me on appropriate medication. About a month after starting the medication, I had my fifth annual post lung surgery check up with my lung surgeon. When hearing my hoarseness he immediately said “I’ve got to prove you DON’T have another cancer”. A bronchoscopy and biopsy quickly revealed a small stage one malignant tumor on my left voice cord. Radiation was recommended; I agreed and had thirty-three doses at 200 rads each. (I was offered no other options other than radiation, to which I will speak later on.)
The first twenty or so doses of radiation seemed to have no effect on me and I was feeling quite at ease with the treatment. But suddenly, at about the twenty-fifth dose all hell broke loose. I was in level nine to ten pain, had no voice and could not swallow anything other than soft foods and liquids. This continued for three weeks after the last treatment and I can tell you it made my lung surgery seem like a cake walk. I will also tell you that no one had prepared me for such a debilitating reaction and I became quite upset with the radiation oncologist for his seeming lack of concern. But that’s another story that will not be told here!!!
Over the next year or so my voice improved to approximately eighty percent of pre-cancer quality, all follow ups indicated the tumor was gone and no recurrence. Again, I was on the road to a normal, cancer free life and enjoying my retired life to it’s fullest. Then the quality of my voice began to deteriorate and continued to do so over the next few months. In an effort to find a solution I sought out the experts at the University of Florida Voice Institute where they performed tests and videoed my cords in action. They felt my problem was a result on hardening and scaring of the cords as a result of the radiation and agreed to try an injection into the cords to improve their flexibility. To assist in future determinations of my condition they did a CAT of the cords. Here we go again -- the CAT indicated abnormal tissue not visible to the video and the following biopsy showed it to be malignant. I was referred to the University’s Medical Center “Tumor Team” where I was examined by several teams of physicians and their unanimous recommendation was a total laryngectomy.
At this point I must regress a little bit. Months before my first visit to the Voice Institute and because of my deteriorating voice quality, I had begun doing a lot of research regarding head and neck cancer. During this time while at a campground in our motor home, I met a Lary (Joe is his first name) who told me about the WW site. I can not even begin to describe the difference this group has made in my knowledge, understanding and ability to deal with my situation. I know this for sure: Dutch will have bigger and faster wings in his after life than he ever had while flying in his military career!! On WW I met member Jim Rice who had his surgery performed by Dr. John W. Werning at Shands Medical Center and Jim highly recommended him. As a result I chose Dr. Werning to do my surgery. Jim, thank you, I could not be more pleased.
During a pre-op consultation with Dr.Werning he agreed to consider doing a partial laryngectomy utilizing laser (he had trained in Germany under a world class surgeon). As it turned out, he was unable to feel confident that he could properly accomplish the removal of all the cancerous tissue and, by pre-agreement, proceeded to perform a total via conventional surgery. This was April 8, 2005; as of this writing I am seven months post-op and again feeling like I have the world on a string. My follow ups are all good, I have no swallowing problems and am voicing very well with my low pressure TEP and utilizing, with good results, a hands free valve whenever I feel the occasion calls for it; otherwise, I occlude with my finger or a Provox HME cassette. As one WW member put it, I consider my condition to be a slight inconvenience, not a handicap. By the same token, I am well aware my condition could change overnight; nonetheless, I will keep my positive outlook and attitude because I firmly believe that is critical to my health and welfare.
Earlier I mentioned the ONLY recommended treatment for my original laryngeal cancer was radiation. Some who will be reading this know that I am unhappy about this situation. I am, for two reasons: 1) There was another option that I could (should) have been made aware of, that being laser surgery, which in many places is the treatment of choice for the type and stage of my cancer and 2), I should have been, but was not, made aware of the full POTENTIAL effects of the radiation therapy. I do not specifically blame my doctors for these omissions, but feel that the medical community in general is out of step with today’s enlightened culture. It seems to me that today’s patient should be made aware of all aspects and options relating to his/her condition and that this will only come to pass if we, the patients, insist.
I will add one last bit to this saga. I have four siblings (we range in age from sixty-three to seventy-seven). Two of us smoked -- myself and one of my older brothers who has emphysema and is a four time cancer survivor. The other three have never had any major health problems, so if any of you don’t believe the statistics regarding tobacco use and your health, try to rationalize my family’s numbers.
As every day passes, I realize more and more that my medical future has no certainty and I know this is not the end of my story. But, as a Newbie to the world of Laryngectomees, I am quite comfortable with my condition and sometimes wonder how anyone could go through the experience without the knowledge and support afforded by WebWhispers. I also realize that I am one of the very fortunate ones and only wish that others could also be. With all the problems in the world, perhaps the best hope for the future is that progress in the fight against the big “C” will someday end, or at least greatly diminish, the anguish we Larys and our loved ones live with today.
Dave in Florida
Pondering about the Past
By Pat Sanders, Editor
The December 2005 issue of HeadLines was #120. I never would have dreamed that we would carry this on for 10 full years and I seriously considered closing down because of the difficulty in finding people to share their stories, ideas and experiences. Then I ran into Dave, who wrote his Newbie story for this issue and realized that you larys are out there as are the SLPs, doctors and caregivers who have shared their knowledge in past issues and it is a matter of finding the willing one.
I recommend to new people that they go back and read HeadLines from the early years. I think many believe that just reading the later ones brings them up to date faster but that is not always true since we have to go through the same learning process and skipping the “first year reader” may leave you with unanswered questions that will never be discussed in the high school version.
I know this is a little like hearing your grandpa talking about walking to school 5 miles in the snow because there were no school buses and no one would hook up a horse and carriage to take him to school, which was one room with all grades mixed and one teacher but the lary world was different.
When this newsletter was started in January 1996, there was almost nothing in the public library that did more than give unreadable medical text. One story was on the shelves. That was a book published in 1969 by William Gargan, a well known movie actor of that time. He had a laryngectomy in 1960. I treasure the copy I have (given to me by one of our members and a dear friend, Bill Snowden) because it is entertaining, interesting and we can learn from it. Bill Gargan was convinced that whatever happened to him was the way it would happen to everyone. He was one of the early people who would go and speak to groups or do visitations. He was an esophageal speaker and considered that was the ONLY way to speak. When he first saw and heard the artificial larynx, he took it away from the person and told him to learn to speak the proper way. Yes, he was opinionated, but he was courageous and a real fighter. Imagine what he would think if his ghost could walk into a room full of us jabbering away with ALs and TEPs and Hands Free Valves.
In 1995, I was trying hard to find something to read about larynx cancer on the new computer ordered in anticipation of my voice loss and there was little there. The first search engine was Lycos created in 1993 as a university project. At the end of 1993, Lycos had indexed 800,000 web pages. I doubt there was one page for a laryngectomee. Just a few months ago, Yahoo announced that its online search engine has more than 20 billion Web documents and images. Google probably has kept doubling and redoubling until it has more than that. Look for anything pertaining to us now and you will come up with more hits on sites than you have time to filter through. So our problem has gone from no information to sorting through too much.
I would like to pull some ideas and thoughts from the early 1996 HeadLines. Simple suggestions because what did we know back then except our own experiences and feelings about what had happened to us.
· Many of our winter problems are caused by a lack of humidity, so be sure to have a humidifier by your bed. Breathing the moist air can relieve mucous and cough.
· A small atomizer filled with clean water can be used to spray on your stoma cover when you are in an area where you can’t control the humidity, such as in your automobile or in a room where you don’t have a humidifier.
· Wear your stoma bib. It helps to catch and hold moisture as you breathe. If you are raking leaves, woodworking , vacuuming, or doing anything that raises dust, dampen your bib so it will clean the air for you..
· Drink lots of water
If you would like to be able to talk on the telephone and not have to hold the receiver, get a headset and hook it up to the telephone you wish to use. I have mine next to my computer, where I spend a lot of time and have a comfortable chair!
Another possibility is to use a speaker phone. Some people have great success with these, but, if you have not used one before, stay near and talk right “at” it for best sound. You will have better quality sound using the headset as there is an echo from the speaker.
You can get a flashlight with a built in battery, small enough to go in your pocket, and with a flat bottom, so that it will stand up. It also has a switch that does not have to be held to stay on. For those of us who use one hand for our speech aid, it is handy to have a light source that stands alone.
(continued on page 6)
Father’s Laryngectomy by Carolyn Capps Hayes, daughter of Elliot Capps
The doctor said, “There’s a cancer growing in your throat and we’ve got to remove your larynx. The process is called a laryngectomy.” My mind began flooding with all sorts of questions and fears, so many, I couldn’t even voice them. I sat stunned. Yes, I was thankful they felt they could remove the cancer, but thoughts came to me, he’ll never talk again; he’ll never sing again; how would we communicate?
I ‘had’ to be there when they wheeled him to the operating room because, even with his coarse voice, I wanted to cling to every word. I wanted to hold on to the past because I feared the future. I would never hear his voice again, the voice I have heard all my life.
Surgery was a success and he was going to be all right. I tried very hard lip reading those first few days because he was alive and we could ‘talk’. When he was given his Servox and the very first sound came out, I can’t describe my jubilation. My own name has never sounded so sweet. It reminded me of the first word my child said. I had prompted and waited for that first “Mama” and when it came, it was awesome!
Months later, we were introduced to a new idea - TEP. A short surgery later, a lot of hard trying, some set backs and Dad was able to speak again. A miracle? I think so! The future didn’t have to be dreaded. There was light at the end of the tunnel and voice at the end of surgery. Those of you who have had this surgery don’t realize how the people around you love to hear you ‘speak’. Through all of this, God has shown me the He is here and He has taught me that speaking doesn’t just come from the voice and listening doesn’t just come from our ears. It comes from our heart. Use your hearts to speak to us and encourage us to be better listeners. To me, your stoma is a medal of courage, perseverance, commitment, suffering and bravery. Wear it proudly! It’s a miraculous sign of life. Don’t be afraid to share your miracle with everyone you meet.