DISTRIBUTED BY AMERICAN CANCER SOCIETY
edited by Pat Sanders
Kirklin Clinic Head and Neck Cancer Support Group, Birmingham, Alabama
Recently, I sat on the deck of my daughter’s house in rural Lauderdale County, AL drinking a cup of coffee while three cats surrounded my feet. My granddaughter was safely off to school while my daughter and her husband were off on a horseback vacation to Kentucky. I was “child-sitting” here and my wonderful, loving, wife was “parent-sitting” with her elderly mother in Tuscaloosa. With all this peace and quiet, I started reflecting on my bout with the “Big C” and why I have the attitude I do about it.
Years ago, while I was personnel director for a hospital, I was asked to give a talk to a BOE class in the local High School on applying for a job. I selected two young ladies from the class, coached them on the way I wanted them to dress and act on the day of the speech. One dressed neatly and came in with a positive approach while the other slouched in with a sloppy appearance. The questions and answers were almost the same but the applicants delivered the answers with a different attitude. It made quite a contrast and it was such a positive learning experience for the class that I was invited back as long as that teacher was there.
What does this have to do with cancer and how to deal with it? The same positive thinking helps there, too.
God never promised us that we would not have adversity in our lives, but that when we did, He would be there to give us strength to deal with it. So, when I got cancer, I made up my mind to fight it, to win and not let it rule my life with constant worry about it’s return. I had seen too many people who let cancer become the center of their lives, who wondered constantly what they had done wrong, would it recur, would it take their lives! I decided to have the cancer removed and to get on with the rest on my life. It is now 4 years later and I look at what happened as a bump in the road of life. While we can never brush it aside, we don’t have to let the negative thought dominate. Will I ever have cancer again? Who knows. I will deal with it, if and when it happens, and will not dwell on the possibility. It will be another bump in my road.
So, this afternoon, a cute little nine year old will return from school, doing cartwheels up the driveway and give her PawPaw a big hug and a quick “Love You”.
YEP! LIFE IS GOOD!
Laryngectomee Laughs by Al Weitzel firstname.lastname@example.org
When I was preparing a manuscript for a professional convention, I asked members of the San Diego New Voice Club to tell a brief story or two about their most memorable experiences in their communication with other people. Here are some of those stories:
· A laryngectomee using esophageal speech was talking to a friend in a store, when a bystander, hearing her voice, commented, "My, you are hoarse." She replied, "No, I have had my voice box removed and that's how I talk now." The bystander patted her on the shoulder and said, "That's all right, honey, it will grow back."
· Because of her use of an electrolarynx, one female is often taken to be a male on the telephone --she called it an "easy sex change."
· The use of an electrolarynx on the telephone is an excellent means of disposing of solicitors.
· Another electrolarynx user commented that she and a friend were followed in a store by several kids who thought the device was “cool” and wanted one.
· A user of esophageal speech told a cute story about an episode with a pet. Dogs don't hear as well in low decibels of esophageal speech so when I asked a dog where his ball was, he looked at me, came closer. I asked again. He cocked his head, came closer, and then he finally went after his ball. It really amused me . . . the look on his face as he tried to understand."
· "When I came home after surgery and my Great Grandson saw me talking with the artificial larynx, he got a block out of his toy box and would move his mouth like me."
· One respondent seemed to take pleasure in having some inside information: "Most of the time cashiers think if you can't speak you can't hear, and they will talk about you openly with other people. When you look at them and smile, you should see the looks on their faces."
· "I was doing a presentation at a elementary school about the effects of smoking. One small boy wondered, "If you can't ask permission, you can't go to the bathroom."
· When I was totally voiceless, I stopped to buy gasoline, and wrote a message to the clerk that said, "$7 on #2 pump." The clerk stared, obviously not able to read or comprehend what I wanted. Luckily, at that time, a third person entered, understood the situation and read the message aloud to the clerk. After the transaction was completed, my interpreter commented, "Now, that was a communication problem!"
What Makes Speech? by Glenn E. Peters, M.D.
My subject today concerns the differences in sound produced by different users of the TEP. You have probably noticed in the Support Group meeting that some folks sound great and others seem to struggle. So why is that?
Let’s start this discussion with the real way that a larynx helps “talk”. To put in the simplest terms, all a larynx does is to make the air coming out of our lungs vibrate. That’s it—just vibrate. Speech does not come from the larynx, a vibrating air column does. What we know as speech occurs when this vibrating air column is made into words by our throats, mouths, tongues, lips, teeth, and so on. A case in point is your Servox, which provides vibration only.
Now that we have this background information, let’s get on to our question. Remember that a TEP replaces the larynx by supplying another source of vibrating air. This time what vibrates is the lining of your throat in the lower part of your neck just above your stoma. The differences in speech quality largely center around the differences in this part of the throat and upper esophagus. These differences include the following:
· What was the primary closure method used to close the throat after the larynx was removed:
2. “T” type of closure
· Was a flap of tissue transferred from another part of the body used in your reconstruction, as in:
2. stomach “pull-up”
3. chest muscle flap
4. forearm flap
· Did you have radiation as a part of your cancer treatment
· Did you have an infection or a fistula after surgery
· Did you develop spasms in the muscles of your throat after your surgery
· Do you have less than effective lung power
· Was it necessary to remove a part of your tongue with your larynx
As you can see, there is a long list of factors that play a role in the development of speech with a TEP. The bottom line is that each patient should be evaluated on an individual basis for this device. While the TEP is probably the state of the art at this present time it might not be best for every patient. To find out more, ask your doctor.
Speech is not all we lost! By Pat Sanders
The most obvious result of our laryngectomies is being left without our natural voices. It is the part that is noticed and remembered by others. That we are ‘voiceless’. And, yet, as we learn to speak using other methods, an electronic larynx or a TEP (tracheo-esophageal puncture), we slowly overcome that part. It’s true, we don’t sound exactly the same, but vocal communication is established and, with a number of adjustments, we start to take that part of our lives ‘for granted’ again. I saw this in myself and now I watch others making this same journey. It is particularly obvious at our support group meetings. We meet once a month and we see a person, who is struggling with learning the Servox one month, starting to be understood fairly well the next. By the third month, most of what they say is understood and six months down the road, they are flipping that Servox up to the neck, automatically pushing and releasing the button, and phasing sentences so they are heard distinctly. Speaking this way has become a controllable part of their new lives. Because we now communicate in an almost normal fashion and because our friends and families have become accustomed to our new voices, they sometimes forget that talking is not all there is to adjust to in this post laryngectomy world.
The parts that are not so well remembered by others are the parts we work constantly to control. We taste, smell, and breathe differently and our noses either drip or dry up. The mucous production goes wild for a while. It does get better gradually, but even then we have good and not so good days. We may be talking so clearly with the TEP that we sound much as we used to, and then, start to sneeze or cough and, all of a sudden, we can hardly talk with the quantity of mucous being produced. New laryngectomees ask about this all the time, because it is constant right after surgery. The answer is that the mucous will lessen, the intervals between coughing spells will be longer. Sometimes we will have sudden, coughing spells when at a movie, when we enter a shop or stop to get gas? Who knows what triggers them. Something in the air like fumes or perfume or smoke or just the change of air quality, from dry to moist or hot to cold. So, what do we do? In a movie or a meeting, sit on the aisle so you can step out if you need to! Carry cough drops or mints and be aware that, if you can, you need to stop it before it starts. You will learn to do the appropriate thing to take care of stopping the cough and cleaning up the results.
Simple things can become complicated. I went to the dentist because of a broken tooth that required a crown. My dentist has a chair that lays you almost flat, so what happens to anything that gets in your throat? They used to sit me up, hand me a cup of water and I would gargle, rinse and spit. Not exactly what we are able to do, so I worried about getting some sediment in my throat from the tooth they were preparing. I knew it would make me cough and, once started, I would have a hard time stopping. My solution was to warn them of my limits, that I could not cough up anything they dropped into my throat. Their response was for the assistant to be extremely solicitous is using the vacuum and the dentist moved back several times to let her be sure she got it all.. With teamwork, another problem was solved.
I used to cook by smelling the aroma of spices. I knew biscuits were ready by how they smelled. Milk, slightly soured, was used for cooking, not drinking. If there was the faintest odd smell to meats, I knew it. Now, I go by looks, timing and my memory. My taste buds used to be so very sensitive that I could figure out what herb mixture had been used for seasoning in various dishes. This ability is gone and I worried a little that if I were served food that had gone bad, I might not know it until I got sick later.
Every day, we are confronted by the differences in our lives and we learn to deal with each little problem or project that arises. If we share with each other and are willing to learn, we can save a lot of discomfort. Our lives are full of “Learning Experiences” and, if we don’t learn, we are doomed to having the same problems over and over. We will be learning the rest of our lives how to live a different way than the one we had learned in our earlier lives. It’s slow going, but life is worth every minute of the time spent adjusting. I came across this that can be an inspiring thought for any cancer patient:
Made weak by time and fate, but strong in will
We are not now that strength which in old days
Moved earth and heaven, that which we are, we are -
One equal temper of heroic hearts
To strive, to seek, to find, and not to yield.
TIP OF THE MONTH
Here’s another tip, that I’ve been using a lot the last few days with the flu: When you have stubborn mucous rattling around in your lungs, use gravity to your advantage and bend over deeply while coughing. It really helps.
Al Weitzel email@example.com
A Common Problem by William Carroll, M.D.
I recently saw a patient who reminded me of a common problem for those with a tracheostomy or tracheotomy. When required to breathe through a stoma, several of the functions of the upper airway are bypassed. Obviously, this results in loss of voice, loss of the ability to filter inspired air, and an altered sense of smell and taste. Another very important function of the nose and mouth is to humidify inspired air. The lungs and trachea are accustomed to air that is 100% humidified. When the air is drier, the normal secretions thicken and become hard to clear, there is more chance of developing infection (pneumonia) and bleeding and crusting may appear.
Early on, after undergoing a laryngectomy or tracheotomy, the dryness that occurs in the airway is quite a problem. This is the reason for wearing the moist air collars during the hospital stay. Fortunately, for most patients, this problem quickly becomes less of an issue. The humid climate of the southeast is a benefit and many patients can cope with the dryness simply by covering the stoma with a bib or scarf. In the winter, however, the humidity indoors with the heat on can easily be as low as 30%. The tissues that are designed to deal with 100% humidity are then exposed to 30% humidity. The problems listed above may begin to appear.
If you are having none of these difficulties, don’t worry; keep caring for your stoma as you have been. If you are experiencing crusting, streaky bleeding, difficulty clearing secretions or are having difficulty clearing a chest cold, try adding more moisture. Make sure you are drinking a lot of water and juices. Try moistening the bib that you wear over the stoma. Take a couple of steamy showers a day. Use a cool mist humidifier in your bedroom (clean frequently so that mold doesn’t grow). If you’re doing these things and still have problems, call us. We’d like to check things over.
Our Support Group! What is it like? By Scotty Chandler
If you arrive early, you see a few people milling around talking and most likely drinking coffee. They might be laughing at something another is telling or be in a serious conversation but you can bet somebody will say hello and welcome or wave a ‘good to see you again’. They come from different cities other than just the Birmingham area. Some from as far as 200 miles away, Dothan, for instance, with others coming from Tuscaloosa, Huntsville, Anniston and we have had guests from Decatur, AL, Chicago, IL, Boston, MA and my family members from Texas to “just see what y’all talk about”. You might see a visitor from American Cancer Society, a Speech Pathologist, a student or you could see a relative of a patient still in the hospital. You just never know who will be there. We all have one thing in common, we come to learn in order to help ourselves or someone close to us. Each has a distinctive story to tell.
Everyone signs in and leaves their address, if they want to get on the list for the monthly newsletter, and stamps their ticket for free parking in the deck When the meeting starts, we introduce ourselves and give a little background so our new guests and visitors will know something about us. Then we discuss things of general interest or problems someone is having. Maybe ask questions like: When will the swelling go down in my neck? How do you talk so well with the Servox and I can’t get a decent sound? How long do your batteries last? I’m scheduled for TEP surgery. What can I expect? How do you care for the prosthesis? What do you soak it in? These are some of the things we discuss.
I know I wish I hadn’t waited so long to come. They helped me ‘a bunch’ right off. I was still unclear about what to do for a few meetings but, then, I started asking questions others didn’t ask, getting several opinions or having the answers repeated. It helped me get on with the program of feeling good about how to live with MY problems. Just being around others helps. Sometimes a newcomer can become impatient because they can’t do the things they see others doing; however, they get reassurance that they will get better and they get ideas on how to do it.
Mental as well as physical well being is the goal and we may improve the former by giving or receiving a pep talk, a hug, a shared good experience, and sometimes a discussion of a problem or just social interacting. This can relieve worries. We share positive ideas and experiences and try to instill a positive outlook and hope for one another. We have a unique problem inherent to each but at the same time to the group., and maybe just one little something someone says will make a world of difference. For example, a simple task for one who has had their TEP for two or three years could be a real labor to a new TEP user. A hint to a new Servox user can help them to be understood. Little things mean a lot in such cases as we learn from each other.
Sometimes we discuss specific problems or updates on others who may be having problems with their health. We are constantly aware that the fight against cancer is far from over for some of us, but we can’t and don’t dwell on it. Stress management is a subtle factor since we do laugh and joke and relieve tension but at the same time we talk prevention, nutrition (Pat does). I think some key things are:
Awareness of the needs of others,
Education in helping others understand,
Intervention if asked for help or advice,
Prevention of possible problems before they arise
Help in dealing with stress.
The basic support group is a group of people with similar interests working together for a common goal. In our cancer support group we share a vision to find better, easier and more simple ways to get and maintain a degree of good health.
Why Me??? By Charles Lamar
Never had a serious health problem in my life, worked 31+ years for a major medical center and only missed 5 days from work. Why me? Don’t know. I can only guess. My sister, some 10 years ago, was diagnosed with ovarian cancer. She was one of these people who watched her weight, exercised, never missed a church service, active in many civic affairs; yet the dragon decided to visit her. After her first surgery, I brought my mother to visit her in the hospital and on the way there I told her what the diagnosis was and why the surgery. Her comment remains with me to this day “Why, she has never done anything wrong. Why would she get cancer?”. My explanation to her was that cancer did not respect age, social status, rich, poor, black, white, male, or female. We do not know why this happens to some people and not to others. But we have to fight and this will to win is more important than why or all the medicine and treatments that the medical community knows. We can’t change the why, so instead of asking why, we need to say we are going to beat this and then have a long and fruitful life.
Doctor, Why is it necessary for me to see you so often? Didn’t you tell me you “got it all”?
First of all, I don’t think that the term, “get it all”, applies in the surgical treatment, or any other form of treatment for that matter, when you are talking about cancer. Cancer is a diverse population of cells some of which are programmed to spread throughout the body. This can occur when a tumor is just barely or not even clinically detectable or when the tumor is massive. It just depends on the genetic make up of any given tumor. By the way, Not all tumors necessarily have these groups of cells. Therefore, even though a cancer can be completely removed from the head and neck area, that does not mean that it may not have the capability to show up somewhere else in the future. To screen for this, we get yearly chest X-Rays, blood work when indicated, and check for things like persistent bone or skeletal pain.
Next, we know that whenever someone develops a cancer in the head and neck there is between a 10 to 20 percent chance that they will get another cancer in the region. This also includes the esophagus and the lung. We screen for these tumors by frequent physical examinations in the clinic. The head and neck is a wonderful area to work in for both the physician and the patient in that 80 percent of the area can be examined directly in the clinic without having to rely on expensive X-Rays, CTscans, MRIs , and the like. Also, the general rule is that if your tumor is going to recur or a new one develop, 80 to 90 percent of these will do so within the first two years. That is why we see you more often during that time.
So, besides being a pleasure to see you and keep up with your goings-on, we are really trying our best to catch a problem in its very earliest stages; that is, when we have the absolute best chance to take care of it.
Glenn E. Peters, M.D.
Hello from the Land of the Midnight Sun from Belva and Herbert Pearce, Jr.
I say that “Hello” by using an Electro-Larynx since I have been a laryngectomee for 10 years. I was born in a small town in New York State, grew up there and married Herb, an Air Force Sgt, 44 years ago. We traveled all over the U.S., Japan, and Germany and raised 6 children; 5 of them live here in Anchorage, Alaska. We have 19 grandchildren so we have quite a house full at the holidays.
In May of 1988 a small tumor was discovered during an asthma check-up at Elmendorf AFB here in Anchorage. With my having asthma, they felt they didn’t have skills to do the biopsy. I chose a ENT here in Anchorage and it was Cancer. In July, 1988, a complete laryngectomy was done and I needed no further treatment. It was a very hard time for all of us. We had never heard of LARYNGECTOMEE. My Doctor didn’t even know of any other laryngectomee up here. So we started reading anything we could find. Our son, who is a lawyer here in Anchorage, contacted people he knew in the lower 48 who sent us all the information they could gather. At that time, the American Cancer Society up here knew nothing about laryngectomies. We struggled but got through it okay.
Last year, a Speech Therapist called me and said she had a new laryngectomee, so we started a group with the two of us and the new person. Now, we have 20 active members & 3 Speech Therapists. All the ENT’s, as well as the ACS, know about us and they refer any new laryngectomees to us for information. We have a new Native Hospital here in Anchorage that serves all of the Native people in Alaska. We are seeing 1 or 2 new laryngectomees every month from the bush. I went to the Native Hospital yesterday to see new laryngectomees and I had to use an interpreter to speak with them because of all the different native languages.
I started using a computer to get information on larynx cancer and found other laryngectomees across the country and the world. I want you to know how much our group enjoys your HeadLines newsletter. We meet for breakfast twice a month at a local restaurant. I always bring your newsletter & pass it around. Just wanted to say thank you. If anyone comes up this way, feel free to call me or stop by for coffee.
Hi! Herbert Pearce here. After they removed Belva’s voice box, it was two years before we got back to normal living and believed we had a future. Last year we started meeting with other couples who have had this surgery and now we meet every other week on Friday morning with laryngectomees and their partners in a local restaurant. We coordinate with the ACS, have flyers in the hospitals and voice therapists in our organization. If the patient agrees, we meet with them just before they go under the knife, trying to prepare them for the surgery and what they can expect in the future.
Everyone we met with says they were glad we were here. I hate to think that our numbers are growing but we do enjoy each others company. We go on picnics, camping, meet for coffee and have a Christmas party. This is what we do at the top of the world.
Herbert and Belva Pearce
Early Servox Use by Nancy D. Lewis
The Servox is an important aspect of your rehabilitation following surgery. We know it is frightening not to be able to communicate; therefore, we order a Servox to be delivered during your hospitalization. Since your neck is sore and swollen immediately following surgery, we sometimes use an oral adapter to assist with learning. This is an attachment that is placed in the oral cavity inside your cheek. When using this, remember not to bite the strawlike attachment and do not “bury” it in your cheek. Once the swelling and soreness decrease, we place the Servox against your neck and search for your “sweet spot”, which is the area that produces the best sounds for communication, This spot is different for every person.
With either method, speak slowly - one word at a time. Pronounce your words with every syllable included. Keep your finger on the button during the entire communication attempt. You will learn to space the use of the vibration to help with words and phrasing.
Make it a family affair - Not only are you learning to talk but your loved ones are learning to listen. It is vital to Be Patient - it will take time and practice but perseverance will pay off with communication that will allow you to gain control of your life. Good Luck.
You say po-tay-to, and I say po-taw-to... by Joanne F. Goldberg
With a cancer diagnosis, each of us is thrust into the brave new world of seven-syllable words which are difficult enough to understand, much less to pronounce properly.
How many of you have ever heard your disease described as “cancer of the lar-nyx”? Of course, those of us who’ve had to pay attention to these things have long ago learned how to pronounce larynx (lar’-rinks)---you do it once and somehow it doesn’t seem so hard.
There are other words which cross our paths or mark our history, words which we learn to use in communicating with our caregivers. For those of you who’ve had laryngeal (lar’in-je’al) cancer, your vocabulary has probably multiplied in ways you never dreamed possible. You likely learned that you had one of many possible types of laryngeal cancer, perhaps squamous (skwa’mus) cell, or glottic (glot’-ik), or perhaps hypopharyngeal (hi’po-far’in-je’al) carcinoma (car-si-no’ma). After surgery, some of you learned esophageal (eh-sof-a-je’al) speech, in which you take air into your esophagus (eh-sof-a-gus) and use it to produce sounds of speech as you force it out again. Others of you will have chosen to have a tracheoesophageal (tra’kee-o-eh-sof-a-je’al) puncture, perhaps better known as a TEP. You might have to deal with a fistula (fist’yoo-lah) or some other complication.
Does it really matter if you learn to say all this stuff like the pros do? I think so! Your command of the words which describe your illness and your treatment tells your doctors that you’ve taken the trouble to learn this new language so that you might better communicate with and understand what your caregivers are trying to tell you.
Whenever I hear a doc use a word with which I’m not familiar, or one which I think I might not be able to repeat correctly, I ask the doc to write it down, to tell me how to say it, and to tell me exactly what it means. A caregiver who is talking to you, rather than at or around you, will not mind taking a few seconds to explain to you what he or she is trying to say. It’s to everyone’s advantage if you understand as much as possible of what is being done for you by medical professionals and what you are expected to do for yourself in the course of your care.
I don’t know who invented these multi-syllabic words to describe things medical, but our doctors use them and we need to learn how to use them as well. It’s like mastering a foreign language. Even General Motors learned this when it tried to sell its Chevy Nova in Spanish speaking countries, only to find that “No va’” means “it doesn’t go” in Spanish---same phrase, different pronunciation…and definitely a different meaning.
So while you’re about learning how to make all those mellifluous sounds following your laryngectomy, remember to say it right (meh-lif’loo-us). You may not earn an honorary M.D. with your newfound vocabulary but it will put you on intelligent footing with your caregivers…as well as dazzle your friends and knock the socks off your relatives, who’ll wonder where you learned so much so fast!
It looks like you want some help getting through radiation therapy. In previous issues, we have touched on some of the most basic things—diet modification, Ensure and similar products, BLADES as we call the blender, fresh fruit and the like. You are on the right track. Just like surgery, radiation causes a wound that requires adequate nutrition to heal properly; and remember that even though radiation does not kill cancer by heating the cells, the side effects of the therapy are identical to a burn. Burns are some of the most physiologically demanding wounds and can effect metabolism in the most profound ways. And since these wounds are actually bigger and cover more surface area than a surgical incision, their nutritional and metabolic demands can be profound indeed.
First of all, I hope that those of you who are in this situation and are smokers got the message that the reason you are in this predicament is very likely due to your tobacco consumption. Therefore, for once and for all, use the problems that you are having with radiation to QUIT SMOKING. Use the analogy of burning leaves in the fall. Remember that wonderful smell as the smoke billowed off of that pile of burning leaves? Then remember what happened when the wind shifted and the smoke got in your eyes? IT BURNED, didn’t it!! And exactly what is a cigarette but a concentrated bunch of burning leaves, right? Folks, we’re not talking rocket science here.
Next, let’s talk about all that thick, ropy mucous that is building up in your mouth and your throat. In our practice at UAB we are big believers in the powers of CLUB SODA. During our training as interns and residents we used sodium bicarbonate to clean out endotracheal tubes for patients in our intensive care units. That stuff was great at cutting the thick, tenacious mucous that would build up in the tubes. Club soda, or carbonated water, has the same properties. When used as a mouth wash and a gargle it does a great job in cutting through the goo. You can also use it as a beverage for meal times as it seems to have superior wetting properties when compared to water alone. Buy the small 12 ounce bottles and keep them chilled. It won’t work if it looses it’s fizz. Try it, you’ll like it (hopefully).
Lastly, let’s talk some serious nutritional delivery for a moment. Let’s face it, radiation is no walk in the roses, although in the RIGHT setting it can do just as good as surgery for treating cancer in the head and neck. All of the acute or short term side effects of radiation add up to make eating and drinking less than a pleasurable experience. Actually, food becomes more like medicine than anything else. But remember, nutrition is the key to not only to a speedy recovery, but it also plays a large role in your ability to ultimately kick your cancer because you are keeping your immune system intact and healthy as well. The bottom line is this: if things get too bad and your weight starts to fall off rapidly, then you really might want to consider some sort of feeding tube to help you through the short term. At UAB we rely almost exclusively on the PEG or Percutaneous Endoscopic Gastrostomy to help our patients. In fact, we often put this in before radiation even begins, just so we know that we can keep a patient’s nutrition up from the get go. We think that it really makes a difference. So if you really are getting in trouble, get a tube.
You should expect the recovery from radiation to take anywhere from 3 to 12 months, depending on where exactly you received your radiation. Folks who had their mouthes radiated will take longer than those who received it only to their larynges. Hang in there. We know it’s is tough and we are pulling for you.
Glenn E. Peters M.D., Director, Division of Otolaryngology - Head and Neck Surgery UAB
Birmingham, Alabama, USA
After starting out to write an article to help those who have yeast problems with the resulting damage to their prostheses, I discovered how little information there is for treatment and care other than medication daily. So, I went to one of the Larynx Cancer Listservs on the Internet and asked what people were doing to treat yeast problems.
In the meantime, I checked some of the sites with resident experts, and found that the yeast are not just colonizing around the esophageal end of the prosthesis, but are originating in the mouth. Here is what Dr. Blom says on the Inhealth site:
“Yeast infections in the mouth are common in head and neck cancer patients, particularly among those who have been treated with radiation or chemotherapy. Many tracheoesophageal voice prosthesis users experience early failure (leakage) of their voice prosthesis due to yeast colonization of the valve mechanism which prevents competent closure against liquids. Yeast from the mouth is continuously carried to the voice prosthesis via saliva.
Yeast Colonization of Tracheoesophageal Voice Prosthesis Microbial (yeast) colonization of tracheoesophageal voice prosthesis causes irreversible valve mechanism damage and concomitant aspiration of liquid and increased valve airflow resistance. A high percentage of larygectomized patients, particularly those who have been irradiated, demonstrate high oropharyngeal concentration of Candida species.”
So, what can you try to keep the yeast problem under control. The suggestions that came back from this question had to do mostly with methods of cleaning the prosthesis and, hopefully getting rid of the yeast before it damages the valve. These were the suggestions for the products to use for soaking overnight in a solution..
· Hydrogen Peroxide Solution (10 Volume, 3%), antiseptic when used full strength.
· Chlorine bleach used 1 part to ten parts water. Rinse thoroughly before using again.
· Vinegar used full strength.
· A bubbling dental cleanser.
One of the most comprehensive answers we received in answer to the question was from Carla DeLassus Gress, Sc.D., CCC-Slp, UCSF Voice Center:
“Yeast is certainly a problem for many prosthesis users and it seems that everyone has their ideas about how to handle it. The main problem is that there is little objective scientific data to state which is the best method. I’ve heard some people avoid certain foods, others eat certain types of food, various cleaning techniques, just about anything and everything short of voodoo!
For laryngectomees who change their own prostheses, I usually suggest a rotation system where they wear one prosthesis, keep a clean one with them as a spare, and have them soaking a third prosthesis in peroxide. Peroxide should kill the yeast cells that have colonized on the silicone. There are other things that will kill yeast, such as bleach, but one must be cautious regarding the ingestion of any such chemicals, and it is not known if the silicone reacts to such chemicals in some other way. Just rinsing the prosthesis or airing it may cause the yeast to go dormant, but once the dormant cells get the right environment, like a warm moist throat, they will come to life again. Of course after inserting a new or peroxide-cleaned prosthesis it will be exposed to new yeast cells if there is still a colony in your throat. That is why it is better to try to control the yeast in you, and not just kill the yeast on the prosthesis. Nystatin mouthwash is what is most commonly prescribed in the US; it needs to be swished for at least 3-4 minutes, then swallowed to be most effective. (Set a timer to make sure it’s a full 4 minutes; don’t just guess because it’s a long time!)
For those people who use an “extended-wear” prosthesis, such as a Provox, Groningen or the Inhealth Indwelling, that is only inserted and removed by the physician or speech pathologist, Nystatin or some other antifungal medication is the way you have to go. I have known some whose prostheses were lasting only about a month, and after being on Nystatin for a time, they have been able to discontinue it and the prosthesis has lasted considerably longer, up to 6 months.”
For the foods to avoid, yeast loves sugar (ask any baker or beer maker!) so I would think it would be wise to cut back on sweets, at least on a temporary basis to see if it helps. You might also cut back on bakery goods and simple carbohydrates. On the other hand, yeast does not grow well in an acid environment, so every time you eat a vinegary salad dressing, you may be helping your yeast problem. This is a toss up since many find that you do better without fermented products (there goes the booze!). Yogurt has long been known to help encourage the good yeast and get rid of the bad. Try eating some yogurt every day. A little lemon juice will provide an acid base in a glass of water and we know yeast doesn’t like acid. Acidophilus from the refrigerated section at the health food store can be swished around in your mouth for minutes and then swallowed. It is good for the whole digestive tract. These ideas seem to be worth trying since there is no harm and it may help.
Finally, change your prosthesis often. Some change their prosthesis every morning, others once a week or every two weeks. There are others who say they leave theirs in place for three to six months, replace it and throw the old one away. If you have a yeast problem, the latter method is just asking for leaks.
If you think you have a problem, ask your doctor about Nystatin or some of the new medications. Your doctor will tell you what to use, how to use it, and how to monitor the results over time.
Alabama Relay Service
We can learn about services provided free by Alabama Relay. The one of most interest to us is the relay service with hearing carryover in which a non-speaking person types what they want to say and it is read to the person on the other end of the line by a Communications Assistant. The person on the other end of the line answers normally and is heard by the non-speaking person. We never know when we might need this or some of their other new services. For information, contact your local telephone company or, in Alabama, contact Alabama Relay Service.
Laryngectomee, Larry, or Neckbreather?
By Paul Galioni
Having been involved with special populations for most of my adult life I have learned a bit about labels, good and bad. Research tends to show positive outcomes from positive labels and negative outcomes from negative labeling (surprise!).
Labels have always been important to distinguish one population from another for funding purposes – as well as for service purposes. For instance, California went from “categorical” funding for each disability: learning disabled, emotionally disturbed, visual handicapped, physical handicapped, or mentally retarded to “non categorical” funding. Everyone saved money, but every disability fit into only two categories: learning handicapped or severely handicapped. It became a disaster.
Many labels are reasonably neutral. So, Laryngectomees, Larrys, Neckbreathers or whatever we call ourselves is merely a way to identify ourselves to each other and to distinguish ourselves from the population at large. Some people are Vets: WWI, WWII, Korea, Nam, Grenada, Saudi, etc. The point I am making is that labels allow people with similar experiences to recognize each other and bond through the sharing of those experiences. These are the labels we give each other so we can function in a structured society.
Larrys tend to share some things in common and that is understandable, since losing our original voice is only one of the many things that has happened to us. People who have had traumatic injury that results in voice loss may have some things in common with us. The loss of a natural voice is traumatic no matter how you look at it. But questions about dry mouth and radiation, etc. are reasonably excluded from a traumatic (as opposed to cancer related) voice loss.
Seldom do I ever think of myself as a Larry. In fact I just switched dentists to one closer to my work and he asked me if my medical info was correct. I said yes. And he pointed out that I had not written down that I had a laryngectomy. Now, it may be that I have only had my larry for about five years, but it was also because his check box medical form didn’t really cover things in a comprehensive manner and so I just forgot to put it down. That’s how important it is to me. But I do enjoy meeting and working with others who are going through the process because it can seem daunting and much more scary than it really is. I learn a lot more than I knew before and contribute where I can.
So, labels allow us to find each other. Some may stumble around and find other laryngeal cancer patients through circuitous routes. On a computer, you might just type in “laryngeal cancer” and see what shows up. Often finding information is dependent upon your ability to categorize (label) things correctly. We tend to find “security” among our own kind and it is how we find friends and join organizations. It is how we come to know each other.
Paul Galioni, Adaptive Computer Technologies Specialist, LD/ABI Specialist
Lassen Community College, Disabled Student Programs and Services
Let's talk about your ‘air conditioning’ system. Before your laryngectomy you were breathing through your mouth and more importantly through your nose. Your inspired air was being filtered and humidified by your upper respiratory tract. Inspired air was taken from the relative humidity of your ambient air and moisturized up to 100% by the time it reached the gas exchange units in your lungs, called alveoli. At the same time, particulate matter was removed by the mucous blanket which coats the lining of the nose and throat.
After your laryngectomy, you were left without this normal filtration/humidifying system. Your lungs responded in a very normal and protective manner by producing an increased amount of mucous to filter and humidify the air that was coming in. Bloody sputum can result when you cough excessively to clear this increased amount of mucous. You also may be more susceptible to bronchitis ( an infection and inflammation of the lining tissues of the tracheo-bronchial tree) because you are breathing unfiltered, dehumidified air. So, what to do?
1. Make sure you have had a recent chest X-Ray to rule out any significant lung pathology.
2. Make sure that your sputum is not discolored (in addition to bloody). Discolored is green or yellow. This may indicate an infection like bronchitis or pneumonia which may require antibiotics.
3. Do everything possible to increase the amount of moisture in the air you inhale. Some tricks include wearing a stoma bib, but you can also wear a scarf or a turtle neck shirt or sweater. This allows you to conserve the moisture that is LEAVING your lungs in the area around your stoma. Another thing you can do is to irrigate your stoma with CLEAN tap water or saline. Two to three cc's four times a day should help. Other tricks include wearing a soft stoma vent (see your M.D. for the proper size). A small plastic spray bottle filled with tap water can be used to create a mist to dampen your stoma bib. It becomes a portable humidifier---- MOISTURE IS THE KEY. MUCOUS RULES!
4. Lastly, be patient. Your lungs are going through some major changes. Ultimately, they will adapt to the new you. Things generally improve within 3 to 4 months after surgery.
As always, if problems persist, please see your M.D.
Glenn E. Peters M.D. Director, Division of Otolaryngology - Head and Neck Surgery
University of Alabama at Birmingham, Birmingham, Alabama, USA
Few of you who know me have ever seen me angry, especially as angry as I was today. You see, someone stole something from me and stole it with total disregard as to how important it might be to me. It was something I give freely and share readily, but I resent being placed in a position to have it taken from me without my permission. They stole my time. It wasn’t a lot of time, but I could have used it to visit a new surgical patient in the hospital, to write an article for the next newsletter, to visit with a friend, or even to totally waste that time, but at my discretion, not theirs.
In brief, because this is not the important part, I took my car in for servicing at 10AM, was told it would be ready by 12 and I told them that I’ll be later than that, because a friend was picking me up to go to the museum and to lunch. At 3PM, I walked in, confident that my car would be ready. Of course, it was not, but would be shortly. So they said! It was only later that I found it had not even been started 5 hours after I brought it in. I sat and fumed, knowing the traffic would be bad and I had a long drive in front of me. It was only after I arrived home that I calmed down and started to think about the value of time.
When I first heard the doctor say Cancer, after what was supposed to be a routine breast biopsy, it was on the telephone, and the shock was such that it was hard to breathe. I was sitting at my dining room table, where I often read and write and watch TV (sometimes all at the same time). It was as though a huge, dark, heavy blanket had dropped over me and the horror was so great that I couldn’t get my breath. Of course, I went right on making notes and answering when I had to, but my whole life changed….right then, right there. I never thought at that moment of having to go through pain and suffering. It was more like: how many years will this take; how much time will this steal from me?
Within the year, I was diagnosed with another primary, squamous cell carcinoma of the vocal cords. I saw this one coming and the shock was not there. This time I was ready to devote all of my time, or whatever amount it would take, to getting though and getting well. Everything else could go on the shelf and wait until I had the time.
In my office, I used to have a picture of a vulture sitting on a fence, saying to his friend, “Patience, hell, I want to kill somebody!” so I surprised myself with the amount of patience I had with learning to talk again. Time spent wisely as an investment in the future! When we spend our freely given time on something or with someone that makes us feel good, I think those hours do not count as much against our lifetime of expendable minutes as do those that we feel are stolen from us. So, I have spent the entire evening thinking about time and writing about it, but it helped me to write about it and it is time ‘well spent’ for we have spent it together.
Let’s talk about this reflux thing for a minute. Under normal circumstances, there are two muscular bands or sphincters in the esophagus which prevent reflux. One is located where the esophagus joins the stomach and the other is located behind the larynx at the beginning of the esophagus in the neck. The lower esophageal sphincter (LES) often becomes compromised when there is a hiatal hernia, a condition resulting from a weakness in the diaphragm which allows the stomach to slip up from the abdomen into the lower chest cavity. When this happens you get what is known as gastroesophageal reflux- the condition we all hear so much about in the media these days. The other sphincter, the cricopharyngeus or the upper esophageal sphincter (UES) prevents things from coming up the esophagus into the throat and mouth. This muscular ring takes its origin from the lower part of the larynx, a part called the cricoid cartilage. But guess what—you ain’t got one no more since your cricoid was taken out when your larynx was removed. This leaves the upper part of your esophagus sort of flaccid and always open and this could result in the reflux of stomach contents up into your throat and mouth. About 80% of the general adult population has a hiatal hernia. So if you have a hiatal hernia and, in addition, have had a laryngectomy then you get a double whammy.
So what’s a guy/girl to do? Gastroesophageal reflux is usually managed with medicine to stop the stomach from making acid, along with dietary and lifestyle modifications. Severe cases may require surgery to keep the stomach from slipping up into the chest. Taking care of reflux from the UES is more problematic, however. Simply knowing that this is a problem and its cause are probably the most important things. Avoid bending over when you have a full stomach after meals. You may also might try reducing the size of each individual meal and eat four or five times a day instead of the usual three.
Glenn E. Peters M.D. Director, Division of Otolaryngology - Head and Neck Surgery
University of Alabama at Birmingham, Birmingham, Alabama, USA
Some Suggestions About Glue edited by Pat Sanders
· Almost everyone recommends Skin Prep or Shield Skin. Put on and Let dry.
· Apply the adhesive. There are two types, the Brush-on Silicone or the Skin-Tac, which is thinner, easier on the skin, gives a good seal but perhaps not quite as good as the Silicone. To avoid fumes, hold your breath as you apply. With either glue, let dry 3-4 minutes.
· Clean the outer housing with alcohol before you apply the adhesive disc and use the back edge of tweezers or forceps to smooth out any wrinkles. Look through it with a bright light to spot air pockets. A good job here will help to keep a seal.
· Apply the prepared outer housing to the area around the stoma that is covered by adhesive. Be sure to smooth the housing with the tips of your fingers to insure adhesion.
· Don’t talk right away so no pressure is put on the glue until it really sets.
Most of our correspondents agree that back pressure is the cause of “blow-out” and that lowering the volume of your voice, writing a note, or using an electronic larynx occasionally will help the seal to last.
Quote - “The more pressure you put on your seal, the less time you will maintain the seals integrity. When I am in a high noise environment , I still resort to writing messages. I can not order a cup of coffee orally on an airline because I can’t over come the engine noise etc.”
Quote - “Back pressure is the cause. The best way to deal with that is simply reduce the amount of air/pressure you use. I have run some tests on my family and friends, and it seems, though I want to use an extra force to speak, there is very little difference for them ( the listener) to notice a significant change in my voice quality. So, what I am trying to say is that “less is more”. Try not to use so much force, using less ( though you feel otherwise) is quite enough for others to understand you. If you want to improve your voice, using less force, try to articulate every word using your mouth and face. It is quite unbelievable how it can add quality to your speech. If you watch well trained and skilled singers, you will see that they do this, so why shouldn’t we.”
Quote - “When starting out with putting on a seal, have patience. It takes a while to get the feel for what works to get a good seal and how to get the area prepped properly. Also, no matter what you do, some days will be good days, others will be bad. Go with the flow. Most of the time, my seal lasts through the day. But, some days, it leaks early on and I just have to live with it. If I am doing something that requires a guaranteed seal, I take along extra tape discs and adhesive to redo the seal if necessary.”
One of the suggestions for repairing a leak was to lift the edge of the gasket and reapply some glue, smooth it down and let it dry. A preventive idea was to run a glue line all the way around the outside of the disc. Tape is another quick repair tool. You can use surgical tape or Micropore tape and strip it around the edges.
Some necks and stoma areas are not configured well for using this system; however, one person sent in the name of a professor of prosthodontics, who makes custom valves. Another wrote about In-Health working on producing a tape disc that is very flexible to fit odd shaped surfaces. Don’t give up. New things are coming.
Depression and Recovery by Dutch Helms
The early 1990's were my not best years, to put it mildly. I separated from my wife in 1990 with the divorce taking a year before it was final. In the interim, I had met another woman and fallen madly in love with her. We planned to tie the knot in September of 1992...but, 3 weeks prior to the wedding, she called it off and reconciled with her ex-husband instead. I was decimated!!
Shortly thereafter, I was diagnosed with cancer and radiation was recommended. At that time, I was stationed and living overseas - but was medivaced to the USAF Cancer Treatment Center, Wilford Hall, Lackland AFB, Texas....a great facility, but none of my friends or family near.... it was just me and doctors and nurses. No one ever told me about the IAL (International Association of Laryngectomees) or the existence of laryngectomee support groups, so I had no support help at that time. I found out about them later. Unfortunately, the radiation failed to arrest the cancer and I quickly became severely depressed I could not stand the thought of going through the rest of my life with no voice and a hole in my neck. To that point, my entire life had been about talking and singing. My "jobs" had been military jet pilot, negotiator, teacher, instructor, coach, emcee for events, narrator, briefer, discussion leader, etc. I sang in choirs, barbershop quartets and choruses. I simply could not imagine going through life without a VOICE. Thus, being told that a laryngectomy would be necessary, while I was still suffering from going through the divorce and the canceled wedding, really shocked my whole system. Lacking the nearby support of family and friends, drove me deep into depression and to near suicide. I simply couldn’t think of a reason to live.
Luckily I got help and spent over a month in a military mental health facility "getting a grip on life" again. Afterwards, I pressed ahead with treatments and finally the laryngectomy. After the surgery, my best friend since junior high school, with whom I had remained in contact over all the years, offered me the opportunity to live with him, his wife and family while I "recovered". This gesture and experience really saved my life and finally got me out of most of the depression. It forced me to be with people (in this case, two adults and three teenage girls) every day...forced me to talk, get accustomed to using my new voice in all sorts of social situations - shopping at the Mall, ordering pizza's over the phone, and being there when they entertained their other friends. In essence, living with them forced me to become re-engaged in living. At first, I felt like a freak with a computer voice and a funny hole in my neck. But this feeling gradually passed as I became more involved with "living a normal life". I was thrilled when I traded in my electro-larynx for a TEP/prosthesis voice - that boosted my confidence in myself and my ability to communicate. All this time, I was learning that being a laryngectomee was NOT the end of the world; that leading a good, interesting, and rewarding life was still possible. I've been "on my own" and in my own place now for almost 18 months, living as normal a life as possible and I love it!
Another thing that helped me cope was this silly computer!! Having the computer with its games and especially the Internet capability, has been a Godsend! This machine not only provided entertainment and education possibilities, but also the tools to learn new skills - Yes, old dogs can learn new tricks. I quickly established a Home Page on the Internet and, as a lark, attempted to create a Larynx Cancer information site, primarily to help poor folks like me who, when initially diagnosed, needed help getting reliable information, assistance, support and guidance. This "info site" gradually blossomed into the WebWhispers Club that we have today. My association with the site, both creatively in building it and socially/psychologically in participating with everyone in it, has been extremely helpful in coping and living, and that is a gross understatement.
My suggestions for you:
1) See a doctor about possible physical problems - For example: I had thyroid problems but did not know it for a full year after surgery. Once placed on daily Synthroid tablets to take care of this, my attitude greatly improved.
2) Force yourself to become active and involved in life again, doing as much, as physically possible, of what you did before. You will feel self-conscious about your voice - but only at first. This feeling will pass with time and will pass sooner if you get out and use it in all situations. Nothing will happen if you just choose to sit at home and hide from people and life. You may think you are not ready....Hell, no one is ever ready to face things like this. But, waiting to be ready is not an alternative. Getting out is something you need to do, ready or not.... and you don't GET ready until you start to DO something. Launch yourself back into life. Surround yourself with all the support you can. You will soon discover that it ain't all that bad!!
3) Make sure, if possible, that you have something you can do and enjoy doing. Resurrect an old hobby, create a new one, set up a project to occupy your time, energy, brain power, and spirit!! Ideally, find something that requires interaction with other people. Try to help yourself find a good reason to get up every morning... other than to simply watch TV, read, and eat.
4) If all else fails and you are still depressed, seek professional psychological help with individual or group therapy.
I came through and so can you!!!
Dutch Helms, El Lago, Texas
Let's Talk Thyroid by Dr. Glenn E. Peters
In doing a laryngectomy we usually try to save both lobes (sides) of the gland. We will remove some of the gland, half of the gland, or even all of the gland depending on the extent of the tumor in the larynx or the trachea. Your doctor could tell you for sure how much of the thyroid was removed.
What can happen, though, is your gland might not be working like it should, particularly if you had radiation therapy to your lower neck. This can result in a decrease in the level of thyroid hormone released by the gland. Symptoms can include a decrease in your energy level, weight gain, and changes in your hair and skin texture. Thyroid hormone levels are easily checked with a simple blood test and deficiencies can be corrected with a once a day pill.
Source for Handmade Stoma Covers: Linda Beavers, 4483 Co. Rd. 58, Pisgah, AL 35765
or call 256-451-3035. $4.50 each. Measure around your neck (15”, 17”, etc.) and give her that measurement since they are made to fasten with velcro. Bib was designed by a laryngectomee.
American Cancer Society here in Birmingham has small crocheted bibs. They have the Laryngectomee notices to carry with you and in your automobile, so that emergency personnel will know you are a laryngectomee and the card has CPR instructions. These are free and they will mail them out to you. Their number is on our info page.
I'll Make It Now! by Scotty Chandler
The long road to my operation came to an end on November 17,1995. I don’t think many gave me a snowball’s chance in hell of recovering fully, if at all. Boy, did I show them how stubborn I can be! I literally walked out of UAB Hospital five days later. Figured I’d rested long enough! If that’s not recovering quick I don’t know what is but the truth is I wanted out before they could do anything else! Heck, I had a zipper from ear to ear, and was uglier but healthier(?) than I was when I went in. The feeding tube in the nose was the hardest part for a week or so because my morning coffee just didn’t taste the same that way!! After it was removed, the food was kind of bland and tasteless, since I love fried foods, but pureed was fine by me for right then. My nose was running but I had quit coughing up the blood and was learning to squirt water in my stoma (new word and new body part!) without flinching. This was to keep everything healing and moist.
Never once had I thought about the changes I was to face: breathing through the neck, not being able to talk, not being able to smell, not having a very good sense of taste, not being able to blow my nose, being afraid to take a shower, not sticking my head fully under water! There were so many other things I never thought about ‘not’ being able to do again. Just a few others I wondered about: if I would fit in when I was out in public places, if people would look and stare, if I could ever turn my head to the side without turning my whole body, if I would be able to lift my arms over my head (Lord knows I might never be able to improve my golf game even if I could play again). I really wondered if I would live to see my next and second grandchild. These are just a few of the things I was worried about but that I was determined to do again if the Good Lord gave me more time. Well, folks, it hasn’t been like a pleasant walk in the park but I keep plugging and learning things everyday. Things I had taken for granted before my surgery, things I thought I’d never be able to do again, I can do them. There is no such word as can’t anymore, just how can I do this or should I?? A short while back, someone told me I could whistle again. I tried and tried. I can! I didn’t say it was easy or that I sound like a bird but I can whistle.
I don’t worry about seeing my grandchildren. I have three now. The third was born almost on the second anniversary of my surgery, and the fourth is due near the third anniversary. I don’t wonder anymore if I’ll be here to see them grow up. I’ll hang around for that and to see the rest of them as they get here. I’ll Make It Now!
FLY, FLY, AWAY! by Philip Clemmons
Since June of 1990, when I had my laryngectomy, I have made one trip to Australia - longest leg 16 hours, four trips to Asia - longest total trip was Birmingham - Atlanta - Amsterdam - Kuala Lumpur - Vientiane - total time about 36 hours. I’ve also made about a dozen trips to Europe, those flights ranged from 6 to 10 hours. I average over 50,000 miles per year flying. Since January 1, this year, I have been to Seattle, San Diego, Orlando (twice), and Montreal (six times). The way it’s going my Delta Gold Medallion card will be Platinum next year.
I have no problem with flying. Ordinary yawning, which is kind of strange because the air comes out your stoma but one automatically covers the mouth, takes care of equalizing the air pressure. Sometimes I have an aisle, sometimes a window seat. I try to cough at least every 30 to 45 minutes to stay ahead of the curve. I’ve been doing it a long time, so I’m not self conscious, and I do it unobtrusively. I decided a long time ago there is no difference in my “blowing my neck” and someone else blowing their nose.
I use a TEP, and generally have no problem communicating. I look directly at whomever I’m talking to and talk distinctly. If I have a seat close to an engine, or in the back where it is extremely noisy I will speak in the person’s ear. I might point out, I enjoy getting close to the fairer sex, so I figure my low voice is a built in advantage.
When I take an overseas flight I will wait until after supper, then remove the stoma valve flange prior to going to sleep. I clean around the stoma at that time. In the morning, I make a point to get in the lavatory about an hour before breakfast is served. I try to get one that has the baby changing tray that lowers over the commode. The tray makes an excellent place to lay out the paraphernalia associated with re-gluing, etc. I do an abbreviated standard morning ritual; clean around stoma, irrigate and clean the prosthesis, brush teeth (what I have left), shave around my beard, then glue the stoma valve flange. I have a small camera case, about 4” X 4” X 6”, with a shoulder strap. It holds a bottle of peroxide, glue, glue remover, pipette, pipe cleaners, tape disks, cotton balls, etc.; it has everything I need to re-glue. The only glue I pack in ‘checked’ luggage has an unbroken seal. A suitcase full of glue, because of heat and pressure changes is no fun. The only problem I’ve ever had was in Auckland, New Zealand; the security forces wanted to confiscate my glue remover because it was marked “flammable” and was in a metal container. We finally worked that out after I found a supervisor who had walking around sense.
I think I have actually changed a prosthesis in a plane lavatory. They are very crowded, but, if you can afford it, the business and first class lavatories are bigger than coach. In closing, flying is a piece of cake. I do have a lot more fun flying a hot air balloon, but that’s a story for another day.
Carla, please explain about the fitting and selection of prostheses for TEP’s. Why do they leak? What are “extended wear” prostheses?
TEP Prosthesis Selection by Carla DeLassus Gress, Sc.D., CCC-Slp
The “extended wear” prostheses, which include the InHealth Indwelling, Provox2 and a few other European brands, should be considered when it is difficult for a person to change the prosthesis independently (poor vision, arthritis, etc). These devices are manufactured with a 20 Fr diameter, as opposed to the InHealth (Blom-Singer) duckbills which are 16 Fr diameter. Bivona makes duckbills in both 16 and 20 Fr diameter. The larger diameter results in increased airflow and usually a louder voice with less effort. The flap-valves incorporated in the extended wear prostheses also typically require less effort to speak, owing to a lowered resistance compared to the duckbill valve mechanism. The extended wear devices have larger retention collars (that’s why they don’t dislodge as easily), but this can make the insertion a little more difficult. The InHealth Indwellings come with a gelatin capsule loading system, which makes it easier. They are sold in the US to be changed only by an MD or speech pathologist.
In general, the duckbills will leak less than the low pressure (flap-valve) styles, but eventually they ALL will leak and need replacement. If a duckbill leaks THROUGH the middle soon after it’s placed, it is usually because the esophagus is narrow, and the extra length of the device (beyond the esophageal retention collar) rests against the back wall of the esophagus and stays open. If it leaks AROUND the device, it may be because the size is too long (distance between the retention collars) and pistons in the tract, resulting in dilation of the puncture (yielding a hole that’s too big for the prosthesis to fit snugly).
There are 16 and 20 French low pressure/low resistance devices (flap valves). These can be changed by the laryngectomee given proper instruction. It is helpful to use the gelatin capsules, and to make sure that the puncture is dilated to one size larger than the prosthesis diameter before insertion (you can’t park a Cadillac in a Harley sized space!). The time for dilation varies from person to person, but the dilator (or appropriate size catheter) should slide EASILY in the puncture when it is ready.
‘Some’ laryngectomees can wear the standard low pressure or duckbill prostheses as extended wear devices by leaving them in place for long periods and cleaning them in place with the brush or pipette. This will remove mucous or food particles but will not prevent or cure Candida (yeast deposits), which will cause the voice prosthesis to leak. When they eventually wear out, the laryngectomee replaces them. The external strap should not be cut on these, as they are easier to dislodge and can fall into the stoma/lungs.
I now insist on changing the prosthesis (either the true extended wear or the standard ones worn as an extended wear device) every six months, whether it is leaking or not. We have had a few patients who went much longer without changing. But when we eventually removed the prosthesis, a hard crust (not Candida) had slowly grown on the outside shaft, essentially making the prosthesis larger in diameter than its original size. The puncture tract had accommodated to this dilation. When the new prosthesis was inserted, the puncture tissue didn’t immediately clamp down around the prosthesis, causing a tendency for the prosthesis to dislodge and there was leakage around it when swallowing. This is a good way to aspirate the prosthesis into the lungs, lose the ability to speak for 2 days to one month while we place a catheter and wait for the puncture to shrink back down. You may possibly lose the puncture if you don’t get a stent or catheter in soon enough (requiring more surgery to re-puncture), or develop pneumonia from the leakage until it shrinks.
Carla DeLassus Gress, Sc.D., CCC-Slp, UCSF Voice Center,
Box 1703, San Francisco, CA 94143-1703
Pretty Stoma Covers
Mary Bergquist in Texas has a hint that might be helpful to the gals for making attractive stoma covers. You can go to any fabric store and buy lace trimming - about 2"wide (or sew narrow strips together) put around your neck, fasten with safety pins or if you want to be really fancy, velcro!!!. Less than a yard will do it. ( You can make it any size you want by sewing strips of lace together, and run a narrow piece around the neck for a tie).
For New Laryngectomees
If, in the first months after your laryngectomy, your stoma appears to be getting smaller, it probably is! This is not usually an emergency but you do need to see your doctor at your first opportunity and talk about wearing a vent to keep the stoma open until it finishes healing. If you have a vent at home and have not been wearing it , you might put it back in until you talk with your doctor. Many of us wear a vent, sometimes called a button or trach tube. Some of us wear one all day, every day. Others wear one at night to keep the stoma stretched out, but remove it during the day.
Keep a Journal
The night before Dave’s surgery, our youngest daughter gave each of us a journal. It is now and has been a very good coping tool. I have also used it as reference to help rectify some insurance disputes. (what Dr. visited when, who ordered what, etc.)
Doctor, can radiation cause dizzy or fainting spells (vasovagal syncope)?
Let’s start by reviewing some anatomy. Then, I will address the problem some patients have when they turn their heads and get a little dizzy and light headed. On either side of your neck is the carotid arteries which are the main suppliers of blood to the head and more specifically, the brain. This artery comes into the neck from the chest as a single large artery, the common carotid artery, then splits in the upper neck to become the external carotid artery supplying blood to the face and head outside of the skull and the internal carotid artery supplying blood to the brain. Where this artery splits is called the carotid bulb and you can usually feel it as a pulsating mass in the upper neck. The carotid artery and especially the carotid bulb are enervated by some specialized nerve fibers that are sensitive to the chemical content of the blood and also to the pressure of the blood inside of them.
Now, lets say you have had surgery on the neck or radiation to neck. Remember that either of these can cause some degree of scarring around this blood vessel resulting in some degree of “squeeze” on them. The nerves, that I mentioned above, read this as an increase in the pressure INSIDE of them and set in motion automatic measures to lower the blood pressure. These include a lowering of the heart rate and a dilatation of the blood vessels in the rest of the body. The net result of all of this is a relative lowering of the blood pressure to the brain and the sense of dizziness and being light headed. This whole thing can be made even worse if you have some degree of athersclerosis (cholesterol plaque)or if you are taking medicines for high blood pressure. Dehydration also may be a contributing factor.
If you have this problem, unfortunately there is not much that can be done to eliminate it. The most important thing is to simply be aware that the problem exists and not change positions rapidly, i.e. lying to sitting or sitting to standing. Take your time when you get up and don’t immediately start walking. You might want to make sure you are well hydrated and that your blood pressure is under good control and your anti-hypertensive medicine is right for you. If the problem is severe enough that you almost black out or if it occurs very frequently, please check with your doctor and make sure that you are not having transient ischemic attacks (mini strokes) or something wrong with the heart itself causing it to be an inefficient pump.
Glenn E. Peters M.D.
Director, Division of Otolaryngology - Head and Neck Surgery
University of Alabama at Birmingham, Birmingham, Alabama, USA
Life is even Better by Charles Lamar
About a year ago, I wrote an article for HeadLines about a stint of child sitting with my granddaughter and I ended the article with the words “Life is Good”. Well my daughter has advised us that, again, I am going to be called on to do that task this year. This time, my wife will be with me since her mother, 95, who was still home last year is now in a Nursing Home. So we will both have some really great times with our granddaughter and get to watch her come home from school, possibly doing cartwheels up the driveway, and both of us will get the hugs when she comes in the house.
Those words, “Life is Good” have come to recently to mean much more than they did when I originally wrote them. Like most laryngectomees, I have faced problems: the feeding tube, the ruptured fistula, which meant back to the feeding tube until that healed, radiation, the fear of irrigating the stoma, the changing of the TEP, the loss of smell, the fear that I would be rejected by friends or shunned by those who mistakenly think Cancer can be transmitted by touch or association, the sixty mile monthly trips to Birmingham for Doctor visits, learning a new way of talking, and then learning another new way of talking, and the last but not the least of my concerns was the possible return of the cancer. From the date of my diagnosis and surgery to this day, life has had a totally different meaning to me than it did the prior 63 years of my life when I took each day as just another day. In late July, I had my five year checkup with my doctor and he informed me that there was NO indication that the cancer had returned and that I was now a statistic. What a wonderful word “statistic”!!! I now join the many thousands of others who have survived the battle with the Dragon.
I wake each day thanking God for another day that gives me the opportunity to make it a better one than the day before. My cancer has given me the opportunity to meet new people, to enjoy new friendships with members of the Birmingham support group and to be in on the beginning of a new support group, sponsored by the VA Hospital here in Tuscaloosa. I had the chance to speak on the dangers of smoking, along with a Radiation Oncologist, to the entire student body at a local school. I am doing volunteer work in areas which I would never have considered had it not been for having had this cancer.
“Yep, Life is not only Good - It is even Better”
??? ASK THE DOCTOR ???
Everybody tells me to cover my stoma. Why do I need to do that?
Stoma covers come in all sizes, shapes, colors. Some folks even use articles of clothing to cover their stomas. These include ascots, scarves, dickeys, turtle neck sweaters or shirts, cowl neck tops for women, etc. They all serve the same basic function and that is to keep the “bad” out and the “good” in.
Now let’s talk about the bad first. Obviously, the stoma can present an exciting target for all manner of vermin such as gnats, flies, wasps, bees, hummingbirds, and possibly even a misdirected bat! If your stoma is large enough your children or your grandchildren at play may even pose a risk from any of a variety of projectiles. Most importantly, though, the air you breathe is dirty. Dust, dirt and pollen offer the biggest challenges. This is especially true for those who work or play in dusty, dirty environments. So much for the “bad” we want to keep out!
Now you might just wonder what “good” the stoma cover keeps in. The answer is “moisture”. This is, moisture that is generated by your lungs and is lost with every breath unless something is done to retain it. And why is moisture so important? The most important reason is that the gas exchange in your lungs is most efficient when the humidity is high. A high moisture content also assists with the natural cleaning mechanisms in the lungs and helps cut down on what we all know as CRUSTS. Folks that keep their stomas covered have much less problems with crust formation; they cough less, have less mucous production, need to irrigate less, have fewer bouts of bronchitis, and on and on.
So, don’t think of your stoma as your new nose. It doesn’t work the same way. Keep it covered and you’ll find you have much less difficulty with it.
Glenn E. Peters M.D. Director, Division of Otolaryngology - Head and Neck Surgery
University of Alabama at Birmingham, Birmingham, Alabama, USA
The VA, Social Security and Me! by Ralph McCracken
The very best places to get information about disability benefits or compensation is the Veteran’s Administration or the Social Security Administration, whichever one applies to you, and you can find both listed in your telephone directory. However, to have an idea of what you might need to do, I will tell you my ‘step by step’ story and maybe it will help someone out there to get their benefits.
I was diagnosed with cancer of the larynx in early November, 1996, at the VA ENT clinic by Dr. Sing and I came to UAB to see Dr. Glenn Peters a few days later, who agreed. They both asked the same questions about my past history. Did I smoke? Yes, but had quit over10 years earlier. Was I in Vietnam? Yes, for one tour of duty in 1967/8. Without hesitation, Dr. Peters said the probable cause was Agent Orange, a defoliant and a known carcinogen. The next step was a biopsy, which proved what we already knew, and I was scheduled for surgery. I decided to take advantage of having a voice for the few days I had left, so I went to the VA and SSA to ask for whatever benefits might be available to me.
At the VA office, I explained that I was to have a laryngectomy and the clerk filled in the form, which he said I could sign and he would send off to Montgomery, AL. This part was simplified because I was already receiving care at the VA hospital, so all he had to do to get the information he needed, was to enter my name and SS number to pull up all of the records on the computer. If you have not already done the initial application, you will need your official military discharge form, DD Form 214, not the Discharge Certificate that is often framed and hung on the wall! If you do not have this DD Form 214, your local VA will help you find it. My brother didn’t have one and all they needed was some basic information and where he was discharged. He was already on the computer. Some may think it isn’t worth the hassle to try to get disability compensation or VA hospital care, but, in my case, the monetary benefits and the help I get from the hospital with supplies can mean the difference between having to make a decision to spend my savings or doing without!
My next stop was the SS office in Jasper, AL, the small town where I live, and I said I would like to apply for SS disability. They gave me several forms and told me to fill them out, mail them back, and they would forward on to the Birmingham office. I did as they requested, so, now, I’m feeling pretty good knowing I’d applied for both VA and SS benefits and I would have some help after surgery. I was thinking maybe things wouldn’t be so bad after all and I sat back ready for the checks to start rolling in!
About a month after surgery, I had a telephone interview with SSA. My wife answered the questions for me and I was on an extension. They sent more forms to fill out, which I did, according to their instructions, and mailed back. In February and March, I received radiation treatments, which made me pretty sick, but I managed to go to VA to check on my claim there. I was told it was still in Montgomery and they said, if past history was a gauge, it could be a long time, maybe even years! About this same time, I received a letter from SSA turning me down for disability and stating that what I had wasn’t expected to last for 12 consecutive months before I could find gainful employment!
I became very depressed. I was tired and sick from the radiation, the VA was dragging their feet and SSA thought there wasn’t anything wrong with me. I tried to get help from our Congressional Representative and that didn’t work either. Over and over, I read and studied the letter I had received from SSA back in October, 1996. It said I had paid in enough over the years to qualify for SS at age 65 or before if I became disabled. Here I was going through the worst time in my entire life and they are telling me I’m fine. They did ask if I wanted to appeal their decision, and I did, so I called the number they provided and started all over again. By this time, I was mad, and it wasn’t just about them not giving me a disability check and Medicare, but about being told I didn’t qualify for the benefits of my own labor!
In the meantime, something worked out right. I got a letter from the VA that they had reviewed my Military Health Records, as well as the surgical and lab reports from UAB, and they had determined I did qualify for VA disability….100%. I was overjoyed that it took a little over 5 months instead of the years it might have taken. Next came letters explaining my options. For instance, I had retired from the Army in 1981 and I could give up my retirement, but have the same amount added to my VA disability and it would be tax exempt. Other benefits for the 100% disabled Vet included educational benefits for the veteran, his wife and children under 26 years of age. There were even more benefits and the VA was very helpful in explaining all of them during this period.
Now, back to SSA! I lost count of the forms I filled out and sent back. I appealed, and appealed and appealed, again, before it was time to appear before a Law Judge (their term). I followed all of their rules and when they told me to hire a lawyer, I did. The law firm must be approved by SSA because, in the past, many people had been overcharged by their attorneys. When we finally went before the judge, it took 17 minutes to award me the disability claim.
1. If you feel you have a claim for disability compensation, don’t wait, apply for it.
2. No matter what reason is given for their denial of your claim, appeal to the next level.
3. Follow their instructions exactly.
4. Don’t be late with the paperwork. Be timely with everything.
5. NEVER GIVE UP.
Remember, start with the appropriate office and ask for help. As bad as it seemed at the time, and as hard as the struggle was, a little financial security lightened my load. It was worth every minute.
Let’s discuss the partial laryngectomy situation first. As you know, the production of sound or voice is not the most basic function of the larynx. The most basic function is to separate the food and the air which are both taken in through the mouth. The larynx acts as a gate or door. It closes by reflex action when a swallow occurs. It opens when air is inhaled, closes when food or liquid is swallowed. It keeps air moving toward the lungs and food moving toward the esophagus. Part of the larynx is removed during surgery and part of the normal nerve supply is interrupted. The reflexes that direct the larynx to open and close are often disrupted. The main problem that develops is aspiration, or food going into the breathing passage (trachea) instead of the swallowing passage (esophagus). Aspiration may be minor and cause nothing more than a little cough with swallowing or may be severe and cause pneumonia. Early after surgery, almost every patient has some degree of aspiration. Typically this situation improves with swallowing therapy and oral intake can be resumed. Unfortunately, there are occasions when the protective reflexes can never be fully regained and oral intake remains unsafe due to the risk of aspiration. This is rare but can require long-term feeding tube dependence.
In contrast, aspiration almost never occurs after a total laryngectomy because the breathing and swallowing passages are surgically separated. To understand the swallowing changes that occur after total laryngectomy, a little anatomy review would be helpful. The back wall of the larynx actually makes up the front wall of the pharynx or upper esophagus. When the larynx is removed, part of the front wall of the pharynx / esophagus is removed also. When the remaining portion of the pharynx is closed with sutures, the circular opening becomes smaller. Imagine a string tied in a circle. Cut out a piece of the string and toss it out. Now tie the remaining two ends back together. The new circle will always be smaller than the original circle. Just how much smaller depends on how much string was removed. Those patients who start with tumors confined to the inside of the larynx usually have plenty of pharynx left to make a very adequate swallowing passage. Some, however, not only have their larynx removed, but also have part of their esophagus or pharynx removed as well. For these patients, the new “circle of string” can be quite tight. The extreme situation occurs when not only the larynx but also the entire pharynx or upper esophagus has to be removed. This is called a laryngo-pharngectomy. In these cases, the swallowing passage has to be completely reconstructed using small intestine, stomach or a ‘tubed’ skin flap.
Total laryngectomy also disrupts the nerve and muscle fibers that normally contract to help food move down the esophagus. Occasionally patients will have spasm of the remaining muscle, which makes the opening into the esophagus very tight. Plenty of tissue is present to allow easy swallowing, but the muscles are in spasm (hyper-contracted) and won’t allow food to pass. This situation can necessitate a surgical procedure called a myotomy (myo = muscle, tome = to cut) which divides the spastic muscle.
The other factors that can lead to difficult swallowing are radiation before or after surgery, or a wound infection or fistula occurring after surgery. Both make the tissues of the pharynx and esophagus more stiff and less stretchy when food is trying to pass. Both processes can actually narrow the caliber of the opening into the esophagus as well.
Many of the same factors that effect swallowing so dramatically after laryngectomy can also effect the ability to use a voice prosthesis (Blom-Singer valve) or esophageal speech. We’ll save that topic for next time...
William Carroll M.D., Otolaryngology, Kirklin Clinic, Birmingham, AL
Medicine As A Second Language By Joanne Goldberg
Those of us who have had the dubious distinction of being diagnosed with a serious illness, such as cancer, know that one of our first tasks will be to learn “Medicine As A Second Language”. We’ll need all these new-found words and phrases to find out exactly what it is that ails us, what we need to do to treat it, what our choices are, and how we will manage our cancer care within the framework of our business and family lives.
Cancer is a complex illness for which a basic understanding is both necessary and attainable for every one of us. None of us expect our doctors to provide a complete course in clinical oncology, but don’t despair. Most doctors are willing to take the time to explain to us the information we will need to work with them toward a common goal. However, there are a few questions we could ask to help us communicate with our doctors, making it easier for them to help us gain the understanding we need to fight our disease.
For openers, we want to know the exact name of our specific cancer, perhaps some details of the tumor’s pathology, and a brief overview of the recommended course of treatment.
All medicines have the potential for side-effects, even a basic everyday medication like aspirin. So we need to be asking: will the good this medicine can do exceed the side-effects, both short and long term? For every action there is a reaction. A cornerstone of deciding which medical or cancer treatments to use, is this “benefit-to-risk” ratio. Simply put: what’s the upside, what’s the downside, and how do they balance off against each other?
You’re allowed to ask your doctor how much experience he/she has had in treating your particular form of cancer. In almost any other service industry, you would want to know how experienced the service person is at providing that particular service. Medicine is no different and given the stakes we face in cancer, it is essential to know that our clinicians have knowledge, experience, *and* a track record.
A basic level of knowledge will allow you to be comfortable in discussing the details of your care with your caregiver. Becoming familiar enough with your illness to be able to ask the most useful questions takes a little legwork, as well as brainwork, but you will be in far greater control of your day-to-day care if you develop a basic understanding of your illness. Here are a few places to start:
Your local library or bookstore should have a good, basic family health guide. “The Columbia University College of Physicians and Surgeons Complete Home Medical Guide” is a popular reference which can provide the most general information about cancer. Your local American Cancer Society has available a number of pamphlets which provide an understanding of the physical nature of your illness and its treatment, as well as literature which will help you manage the social and emotional issues related to cancer. Your local hospital or clinic will likely have some literature available, and oncology social workers may be able to direct you to other resources.
For those of you who are computer-oriented, there is no shortage of information on the World Wide Web; translating and assimilating it...well, that’s another ballgame. But there are a few sites which offer information in very clear and understandable form, one of my favorites for general information being MedicineNet: http://www.medicinenet.com An extensive medical information website which has some particularly interesting cancer links is the Hardin Meta Dictionary of Internet Health Sources. The page on which the cancer information can be found is http://www.lib.uiowa.edu/hardin/md/oncol.html Don’t forget a basic medical dictionary which will translate some of those seemingly foreign expressions. You’ll find that at http://www.graylab.ac.uk/omd/index.html
Any information resources are useful tools as you begin to understand your illness, but your doctor remains the best source of information and advice. Develop a basic understanding, become conversant in the terminology, and it will help you make the best use of the time that you and your doctor spend together.
If your doctor prescribes a medication, be sure to ask your pharmacist for the printed information form which has been prepared for patients taking that medication. It’s important for you to understand what you’re taking, when to take it, how to take it, and when you need to be back in touch with your doctor about it.
The most vital member of your healthcare team, of course, is...you. It’s your health and you need to be involved in every step of the process. Make your own participation as meaningful as possible, take a little time to familiarize yourself with the basics or beyond. The more you learn, the more you are capable of learning.