HeadLines

distributed by American Cancer Society

Pat Sanders, Editor

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

Articles from 1999 HeadLines

 

ALL THE RIGHT STUFF                                          by  Glenn E. Peters, M.D.

 

As my life passes and my career continues to mature I have become more reflective on what it means to treat and care for patients who have cancer.  Having never had cancer, I cannot sit here and profess to be able to tell you what you folks have endured - the fear and horror at getting the bad news, the dread of the unknown as you face therapy, the pain you suffer with your treatments, and the frustration you deal with as you adjust to your new lives as you go through your rehabilitation.  But I have watched and observed you very closely and it is on that basis that I can say the following:

In every way cancer patients have what is known today as “all the right stuff”.  You are a cross between a top level athlete, an explorer of unknown lands, an inventor, a psychiatrist, a soldier, and yes, even a mother or a father.  Cancer seems to bring out the strengths in a person just when their life seems to falling apart (literally).  It will always be a source of constant amazement to me just how intensely patients rise to the occasion when faced with such devastating prospects.  I have yet to meet a quitter - ever!  You folks are the gutsiest, most determined bunch of folks I have ever met in my life. This is the human spirit, the desire to surmount seemingly insurmountable obstacles, the desire to LIVE in every sense of the word, which I see you folks bring into my clinic every day.

So to all of you I want to say a very special THANK YOU!  You have taught me so much about life and, yes, sometimes death, but mostly life.  Your spirit adds joy and meaning to my existence and challenges me every day to never let you down. 

I hope you all have a very warm and special Holiday. 

Glenn Peters, M.D.

 

HUMOROUS EDUCATION                                     by Scotty Chandler

 

From a page called “On The Lighter Side”,  part of the Larynx Cancer Group site on the Internet, Dutch Helms states “after all, laughter is the best medicine”.  One of our members, Frank Morgan, tells the story of talking to a group of ladies, near Liverpool England, about cancer.  He was using the Optivox electrolarynx with the oral tube. One lady asked if he could change his voice by changing the end of his device?  He asked  “Why would I want to do that?” and she replied “So you could speak in German or maybe French?”  Another of our members, Tor Wold of Norway was speaking with some friends of his own children when one of the friends asked what the other button was for on his Servox.  He replied that one was for speaking in English and the other was for Norwegian!

This is the kind of quick response that is humorous yet educational for those who give

anti-smoking classes.  I will go a step further and say, “humor is often the best way to educate others”, especially school children, to the things we must adapt to as laryngectomees.  It is possibly the best way to tell them of the ill effects of tobacco in a way that helps them to remember what they’ve heard.  We hope that it deters them from ever starting smoking, dipping, or chewing smokeless tobacco, which causes oral cancer.

 

Recently, I had the chance to speak to over 150 students, 15 to 18 years old, in groups of about 30 each, explaining the ill effects and problems of our type of cancer.  I had to speak about thirty minutes in each of five classes, using visual aids: slides showing the normal anatomy of the throat, a laryngectomee’s throat, the drawing with the TEP, all taken from the photos in “Self Help for Laryngectomees”.  I also demonstrated, with humor akin to Star Wars, the use of the Servox as an alternative way of speaking, both with the adapter and holding it to the neck. Explaining that T’s, P’s, and H’s were hard to pronounce, especially with the adapter, I talked about the length of time it took me to learn to speak so that others could understand me fairly well. Then, I told of the surgery for the TEP, which made my speech somewhat more normal. Following with a question and answer session, I was able to stress smoking as the main cause for the surgery to remove the larynx.  One particularly ‘bright inquisitive student’ asked, “If they took your larynx out and this is another way of speaking why do you still speak with such a southern accent?” Caught off guard on that one, I had to explain, “they didn’t take the Country and Southern out of me, just the larynx!”.  I told them it does take a lot of practice to speak whichever type of alternative speech you choose, South, East, North or West!

 

I explained that enunciating and pronouncing words was much harder when anything interferes with the ability to move your tongue and, then, I asked them to try to talk clearly  while holding the tip of their tongue.  After the laugh was over, I pointed out that could happen for real if they smoked, dipped or chewed the smokeless tobaccos and got cancer of the tongue.

 

It being time to lighten it back up, I told them  that I had cramps in my Right Wrist from Talking Too Much so I was going to talk Left Handed a while, which wouldn’t be quite as good as my Right Handed talking because I hadn’t practiced as much!  We had a lot of laughs and fun while hopefully getting the nonsmoking message across.

 

 

Doctor, why did my friend have his TEP done at the same time as his surgery?  I had my puncture done months later.

Let’s discuss the timing of TracheoEsophageal Punctures. There are two opinions as to the proper time to do the procedure. There are surgeons who think that the TEP should be done as part of the laryngectomy (a primary TEP) and then there are those, myself included, who think it is best done as a separate procedure (a secondary TEP). Each camp has a long list of reasons why their approach is better and I will review those with you now.

The main advantage of the primary TEP is obvious: patients will be using their prostheses sooner during their convalescence. This saves a second operation and a second anesthetic. It also has the advantage that the feeding tube can be put into the esophagus through the puncture instead of through the nose, making the patient more comfortable. The main disadvantage has to do with wound healing and maturation of the stoma. The site of the puncture might shift relative to its position in the stoma, making placement of the prosthesis difficult.

Now, for the secondary TEP: I prefer to allow about eight weeks to pass between the time of the laryngectomy and the TEP. The main reason is I want to see how the wounds heal and, particularly, how well the stoma matures. It helps me to see if the stoma is going to shrink in size, called stenosis, and whether a stoma vent will be necessary. The patient needs to be swallowing well, especially foods like meat, as this indicates that the throat is the proper size. In addition, this allows some time for the initial pain and swelling from the laryngectomy to subside. I feel that I can do a better job and have more control of the positioning of the puncture inside the stoma after the stoma has fully healed. The down side, of course, is the need to have a second operation and the need to use a Servox for several weeks or months longer after the laryngectomy.

The bottom line is there are no differences in the speech results in comparing the large series of patients who had either the primary or the secondary TEP.

Glenn E. Peters M.D.

Director, Division of Otolaryngology - Head and Neck Surgery

University of Alabama at Birmingham, Birmingham

 

Tip of the Month

New laryngectomees are always wanting to know about showering without getting too much water in their stoma. Here is a terrific idea from one of our friends on the internet:

An ideal stoma cover for the shower is a Baby's bib, fastened around the neck with the plastic side towards the flow of water.  This gives water protection and ease of breathing.

Sent in by Frank       Silnt Knyt@aol.com

 

 

 

The Shrinking Stoma                   by Glenn E. Peters, M.D.

 

When your laryngectomy was done, part of the reconstruction was to create your stoma. This was done by suturing the cut end of your trachea to the skin of your lower neck. Under ideal circumstances we want the stoma to be at least as big as the diameter of your trachea, but actually hope that it might be slightly bigger.

 

So why do they get smaller with time? Several factors are at work. Any time we create a surgical wound, and the stoma is certainly a surgical wound, the body responds by laying down scar tissue as a natural part of the healing process. Scar tissue is very dense and tough, much more so than surrounding normal tissue. Scar tissue has one tendency that will ultimately affect the final result and that is CONTRACTURE. That's right, by their very nature, all scars get SMALLER. Usually that's not a problem for linear scars on the skin but when the contracting scar involves a round opening, then the possibilities become quite obvious. The opening will get smaller.

 

There are several things that contribute to a small stoma. These include not removing enough skin from the lower neck during the surgery, compromising the blood supply to the cut end of the trachea, putting in too many sutures, too much tension on the trachea-skin suture line, poor nutrition, prior irradiation to the neck, and infection. Also, some folks just simply have a small trachea from the start so their stomas naturally will be smaller.

 

So how do we (as surgeons) manage the stoma and try to reduce the risk of shrinkage or stenosis. Well, the first thing we try to do is to avoid or correct those things that I mentioned above. The second thing we try to do is control the scarring and shrinking process that we all know will occur as you heal. This includes vigorous stomal hygiene to cut down on crust formation and infection. Humidification is important as well. We will also place a small soft stoma vent that can be worn after surgery which will hopefully cause the shrinking scar to mature in an open position. This vent can be removed for cleaning and inspection of the stoma.

 

So what is the ideal size for a stoma? The answer varies for each patient. The opening should be large enough for adequate airflow so you don't experience any shortness of breath at rest or with exercise. It should be large enough to allow you to remove crusts and secretions with ease. The kicker comes in with the insertion of the speech prosthesis. Since the prosthesis itself takes up some room it will reduce the cross-sectional area of the stoma. Therefore, we generally like to see a stoma at least 1.5 to 2 cm in diameter before entertaining doing the TEP.

 

So what do we do for a small stoma? There are several schools of thought here. There are a number of surgical procedures, which have been developed for the correction of stomal stenosis. The problem with more surgery is what? That's right. More contracting scar tissue! Therefore, I have started dilating or stretching small stomas with progressively larger stoma vents. This takes longer to achieve your desired goal, but avoids the vicious cycle of surgery, scar, and more contracture.

 

Talk of Whales and Things                                   by Dick Scheele  Whale76@aol.com

After retiring from the Air Force in 1969, I moved to Hawaii thinking it would be a nice place to live. I got a job in Honolulu, was transferred to Hilo, on the Big Island, where seven years later, at age 50, I became scuba certified and started my education about the ocean. From then on I was hooked and have not stopped studying it since that day.  After five years of snorkeling and diving around various islands, I changed jobs and moved to the mainland. After retiring a second time, I returned to Hawaii and the ocean I found so fascinating. I discovered Sea Life Park and attended their docent school. As my knowledge of the sea grew I became fascinated with the study of cetaceans (whales & dolphins). Soon I was teaching classes at Sea Life Park in the subjects of whales, dolphins, seals, sea lions, and the octopus as well as various other sea critters.

Eventually I was asked to go to various schools to present programs. Opportunity came my way and I got a job as naturalist on a whale watch ship out of Honolulu and then later, a naturalist job on a whale research ship in Alaska. After returning to the mainland, I volunteered at the Marine Science Center in Port Townsend, WA, lecturing on various subjects and helping in the education department. Then one day I developed a sore throat. You know what that meant! It culminated in a laryngectomy. While I was recovering, my daughter visited and brought me an American Sign Language dictionary.  During all the previous years, one of the things that held a place in my mind and heart was a program on whales that I did for a class of deaf children, with their teacher standing next to me signing. I have always remembered their attentiveness and interest.  It was the catalyst to get me moving and after one year and three college classes in sign language, I am once again preparing to lecture about whales and things of the sea. This time I will be lecturing to the deaf. Hopefully I can bring to them something they might not have otherwise learned. I look forward to this as the greatest and most rewarding challenge of my life.

 

Jewell's Story                                          JEWELL HOFFMAN, jewellsh@yahoo.com

 

Hi! I was born in 1958 in Gulfport, MS. Spent most of my life back and forth between the Gulf Coast and New Orleans with family visiting. Was very active in high school, track, tennis, debate, and speech teams. Feature editor and finally editor of the school newspaper. Was a Thespian, belonged to a scouting group at the local newspaper and eventually became editor of that yearly national paper. I was on the Mademoiselle Court (social club), was a Gayfer's girl and was Jr. class Maid. I graduated and began my college career in law at USM and was selected to visit Washington with others at the top of my class. I was President of my dorm, a Resident Assistant (the youngest ever selected) and Was Vice-president and President of the Residence Hall Council.

 

The reason I started out with all of this youthful trivia is because that is when my life changed. At the age of 22, cancer was discovered, and I became a laryngectomee-this was in 1980. After a reasonable recovery period I tried to return to school. I was learning esophageal speech, but really didn't want to use it out loud. I didn't want to be noticed. I was visited by a laryngectomee with unbelievable esophageal speech, Gene Yoes. He walked in the door and said "Welcome to my world!" I was told about the IAL and its Voice Institute and attended. That is when my new life began. The best people you could ever know, or want to, have since been an inspiration and guidance in my life. I learned a lot from dedicated professionals and laryngectomees and today I use very proficient esophageal speech. I didn't return to school until 14 years later, my new field of preference being Psychology. I haven't finished yet, but I will in time.

 

I am married to Greg Hoffman and have been for 17 years, and have five children - Mandy 21, Eric 17, Christina 16, Patricia 14, and Paige 13 - three having been adopted after my cousin Paula's tragic car accident about 9 years ago. But, they are all my own, as if I had given birth to them.   I was and am involved with my local club, Secretary, VP, and President of the club for over 12 years. I was on the board of directors of the IAL for three consecutive terms. I Vice-chaired and Chaired two conventions here in New Orleans. I speak to nurses, college students (on speech therapy), local organizations, and students from elementary to high school levels. I am also a paid professional speaker. There is life after laryngectomy!! We have all proven that.  Ours is a group like no other!! God Bless!

 

Ask the Doctor!

What do you see in a pathology report that makes you send a larynx cancer patient for radiation?

When we do surgery for cancer of the larynx or any other head and neck site we look to the pathology report for some very important information. The report contains information about the primary tumor and the lymph nodes if they were removed. Let’s talk about the primary site. First of all we look at the status of the margins of normal tissue which surrounds the malignancy. This is the “get it all” that everyone wants to know about. In surgery we use our senses of sight and feel to determine how much extra tissue we need to take to see if our initial margins are clear. However, there are times when cancer CELLS extend well beyond what we can see and feel at the operation. We will often do FROZEN SECTIONS at the time of surgery to check the margins and take more tissue if needed. The problem is that frozen sections are not a 100% guarantee of clear final margins, so the PERMANENT SECTIONS may come back positive several days later. In this setting we recommend radiation. Secondly, if the tumor is invading deeply into cartilage or bone then we would recommend radiation. Lastly, if there is evidence of the tumor extending into the neighboring blood vessels, lymphatics, or nerves, then we would recommend radiation.

Now, let’s talk about the lymph nodes. The decision to remove the lymph nodes is based on whether there is a high likelihood that they contain metastatic cancer. Obviously, if there is an enlarged node at the outset then the decision to remove then is clear. If there are no nodes present, either on physical examination or on CT scan, then the decision to take them out depends on the size and the site of the primary tumor. Having said all of that, what we look for in the path report is the number of involved nodes (greater than one) and whether the cancer has extended outside the capsule of the node.  If either of these exist then we would add post operative radiation therapy.

So why do we add radiation? Radiation is given to control microscopic disease that may remain after surgery. It is designed to cut down on the chance of cancer recurrence in the HEAD AND NECK. It has NO effect on cutting down on the chances of cancer showing up somewhere else such as the lungs, liver or the bones. Most patients that die of head and neck cancer do so from a recurrence in the head and neck and not from distant disease, so the utility of radiation therapy becomes obvious.

Glenn E. Peters M.D.

Director, Division of Otolaryngology - Head and Neck Surgery

University of Alabama at Birmingham, Birmingham, AL

 

Hospice Report by Pat Sanders

Yesterday, I was the speaker at an “in-service” with the UAB Shelby Hospice Group.  This was a training session for the Hospice caretakers to learn more about caring for their patients. It was a training ‘practice’ for me since I could learn from their questions what they needed to know about taking care of laryngectomee patients. If this would help to make any one of us more comfortable at the end of our lives, then it would be time well spent.

Since a laryngectomee patient may be on Hospice for other reasons than a recurrence and nurses are the caretakers, I tended to stay more with the comfort issues and ways of caring for us that might be different from their other patients. Their interest was great. I was scheduled to be there 45 minutes, but as more and more questions were asked, we went far over that time.

This is an outline of what we discussed. First, the physical changes of laryngectomy:

1.     How the trachea is separated, shortened and turned to end with the stoma, which becomes the breathing passage almost directly into the lungs.

2.     The smaller esophagus, caused by the removal of the larynx, along with the loss of the sphincter so liquids do back up easily. Discussed keeping patient upright after eating or drinking and raising the head of the bed.

3.     The loss of a large part of our sense of smell and diminished/changed taste.

 

The next step was to explain vibrations and how they create voice:

1.     Vocal cords provide vibration prior to laryngectomy.

2.     Esophageal speech was only method of speech in the past and still used.

3.     A demonstration of the electrolarynx, with mouthpiece and without, and discussion about how we can use it in different locations and get different quality of sound (The patient they have at the present time is able to use it only on the outside of her cheek, so understanding is difficult).

4.     TEP, (TracheoEsophageal Puncture). Showed them how my prosthesis looks installed in the puncture and passed around a box with a low-pressure prosthesis, insertion tool, and gel cap after the original explanation of how they fit together. Told them how we soak and clean the prosthesis and how we can clean and flush in place. I also brought an in-dwelling to show.

 

Basic Care:

1.     Eating is almost a reverse of what we do when we have the laryngectomy. There we start with liquids and proceed to thicker and more solid items, step by step. With Hospice, the patient often has gone to lighter foods and possibly, eventually, to a peg tube.

2.     Bathing. Discussed stoma protection while patient is still able to get into a shower.

Had a shower guard for them to see. Other than this, bed baths are the same as for their other patients.

3.     Stoma cleaning. We discussed the pros and cons of tissues, paper towels, cloth, and gauze pads. The only liquid products I could recommend for cleaning were, water, saline solution, and peroxide (around the neck area and outside of stoma) and suggested they would have to consult with the doctor’s office for anything else.

4.     Humidity can be provided with a room humidifier, or perhaps the type we used in the hospital with a loose collar placed on the chest providing humidified air right in the stoma area. Stoma covers help to hold humidity and irrigation will prevent plugs from hardened mucous. Explained irrigation.

 

I left them with copies of HeadLines and advice on where to go on-line to find additional information. Perhaps this will be of benefit to other support groups or individuals, who might want to contact Hospice groups in their area to offer the same kind of program.  This morning they called to tell me that they thought the program was wonderful, educational, and that the UAB Birmingham Hospice group would like for me to come to them. I guess it worked!

FEAR, ANGER, COPING and LOVE by Linda Smith ssilent@qcsn.com

My husband, Pat, has been through two bouts of throat cancer with radiation, feeding tubes, and all that goes with it. His cancer was discovered in April 1995. His recurrence was in October 1997 and his closest brush with death was a little over a year ago when he got an infection while his immune system was down. I’ve been with him thirty years and it tore up both of our lives.

Years before Pat’s illness, I had something in my own life which left me nearly incapacitated with panic attacks. There was even an ambulance trip thinking I was dying from a heart attack, and several more ER visits with the same symptoms. It left me so terrified of the panic itself that I prayed to die.

At that time, I found that the way I handled fear was to act out in anger. Fortunately for both of us I had come to grips with how I dealt with fear before Pat became ill so that I could recognize my fear as fear and not be totally engulfed by it. I was terrified the attacks would start again during Pat’s illness but all the skills I had learned for coping stayed with me. I was scared the cancer would come back (and it did and we got through it), scared our relationship wouldn’t survive all this upheaval, scared to sell our farm because we couldn’t take care of it, scared to move somewhere new, scared to look at the stoma, and scared of how Pat would react to all this change. I was also angry, pissed-off ANGRY. Often I didn’t even know why. Sometimes I was just mad at Pat looking for how this cancer was his fault; then a friend said, “It’s awful to look for why God allowed this and not get a specific answer.” That’s when I realized my old way of dealing with fear was rearing its ugly head. I was angry about all the changes it brought into our lives and the list of ways my fear and anger got mixed up. That list was short some days and long others. I had trouble keeping my thinking clear. When something was said to me that helped me get more clear or when I found a bible verse that “spoke to me”, I wrote it on a post-it note or an index card. I put it inside the cover of my bible or my journal, in the car, in my billfold, and on the nightstand where I would find them in the wee small scary hours of the night. I remember when Pat was first beginning to shower, I heard every little sound and checked over and over to make sure he was okay. If I was in another room and he dropped something I was afraid to come and check for fear something had happened to him. It sounds like an awful way to live but it really isn’t bad anymore - just different.

I learned to mourn the losses. I miss his voice so much. Sometimes it is hard to ask a question when he is doing a household repair and not be able to get an answer because his hands are full of tools and he cannot speak without his electrolarynx. It is hard when he puts his “voice” on the head of the bed for the night and the light is turned off so I can’t lip-read him when I want to ask one more thing or just hear him say “Night, babe.” So I cry, I reminisce and then I thank God for helping both of us, along with our children and grandchildren, to adapt. I thank God that we have more time together and that when daylight comes, I’ll be able to lip-read again, and that someone invented the voice devices for those who can’t use other speech. It has been hard work with lots of mistakes and hurt feelings. I could not have done it without outside support people. Pat has had his hands full trying to make his adjustments without having to take charge of my healing, too. I learned to be honest about how difficult this was and I have not had one panic attack. I don’t know if I’ll ever get past being hyper-vigilant but I have come to accept that it is probably pretty normal considering what we have been through. We have each worked hard to be where we are today and our relationship is now stronger than ever.

A Return to Sales                               by Herb Simon H457@aol.com

A good salesman has a chance to be just as good or even better after a total laryngectomy. I sold and managed in the car business early in my career, and have been successful in real estate sales. When I found out I had cancer, I thought of all the alternative methods of income, but I knew, if I could ever sell again, I could make a lot more money than disability income would offer. I was diagnosed with cancer of the larynx in October 1994, and underwent 6 weeks of radiation that ‘killed’ the cancer. I was radiated every weekday morning at 7:30am and worked my regular schedule all during this time. My voice returned to normal for a short time until the cancer reappeared in May 1995. It was spreading fast! I had a total laryngectomy the following month. At that time, I actually thought that I would never be able to be a salesman again. I thought that without my natural voice, which was deep and resonant, I would be rendered ineffective. In the months preceding my laryngectomy, my voice had been reduced to a whisper and I had already resorted, on a few occasions, to writing my thoughts. I worked at selling until the day before my operation and had already prepared for the financial drought I thought would lie ahead. I had made enough money in those last months to know there were enough commissions coming in to pay my bills for the next six months. I had prepared myself to concentrate on getting physically recuperated. I walked and walked and walked. From the third day after my operation, I walked the halls of the hospital, rolling the stand with my IV tubes. One lap the first time and progressing to about ten laps five times a day until my release from the hospital after 10 days. Although I was getting physically stronger, I was suffering from the fear of the unknown about my new voiceless self. I was speaking at that time by using a Servox electrolarynx with an oral adapter. I was embarrassed when I went shopping and would use handwritten notes rather than draw attention, weird looks or laughter from those within earshot. It didn’t take me long to figure out that they didn’t have a problem with the way I sounded, I DID! I began going to a support group in August. I joined the Nu Voice Club of Northern Virginia. That was a great boost to my morale. In September, I joined the Laryngectomee Club of Montgomery County (LCMC) in Maryland. I highly recommend support groups for any laryngectomee whatever his/her situation is. I am still an active member of both clubs today because I feel it is important to help other larys that come after me.

While I was recuperating I made myself do positive things. I bought a computer and at first I knew barely enough to turn it on. I pushed to learn how to use it but still kept in good physical shape by walking a lot. I would not allow myself to be overcome with negative thoughts. If I couldn’t be a salesman anymore, I thought, possibly, I could earn an income with computer skills. I didn’t know how I was going to make ends meet, but I never lost faith that everything would be all right, no matter what. Early in October was the first time I was able to speak with the Servox and not use the oral adapter. As if a miracle had occurred, I was able to speak and be perfectly clear and understandable. All of a sudden, my self-confidence came back. I returned to selling Real Estate in MD and VA that same month and made my first sale on the day before Thanksgiving. I sure had a lot to be thankful for on that Thanksgiving Day.

Once I had made all the adjustments, learned about my new self, and produced my first sale, I completely let go of any fears about the future that may have remained. Today, I still speak with a Servox and I have been successful in my sales career. I learned that we, who made our living in sales, are still salesmen now. Although we have lost our natural voices, we have not lost our knowledge of sales, our determination, or our ability to communicate. We have learned many skills over the years and we can use those, along with strong will, determination, and a positive mental attitude. We may sound different, but what we say is much more important than how we say it. Most customers (just like other people), when they have talked with us for a while, don’t even think about how we sound.

In my experience with laryngectomees since my own operation, I have come to realize that most of us are just like we were before the operation. We have the same strengths and the same weaknesses as we had before. All of us can do whatever we put our minds to if we have the faith and will to do it.

A Simple Pattern for a Crocheted Stoma Cover

Since the covers can vary in size considerably and one person might like more coverage than another, my friend wrote out these simple instructions for a bib with ties.

10”tie________________________________________________10”tie

XXXXXXXXXXXXX

XXXXXXXXXXXXX

XXXXXXXXXXXXX

XXXX Bib XXXX

Instructions: Approx. 7” wide

Use inches for measurements instead of counting stitches. This allows for variation in thread and hook size as well as the use of different kinds of stitches.

Chain 27 inches (for a bib that is 7 inches wide with 10 inch ties), turn, slip-stitch in first 10 inches of chain. Triple crochet in each chain for the next 7 inches. Turn, chain one, then triple crochet in each triple crochet. Repeat until bib is as long as you want it: 4, 5, or 6 inches. Single crochet around the outside edge to the single chain (the 10 inch tie you did not slip stitch). Finish off.

 

     ***************************************************************

I prepared the following as a handout to go in a package for new laryngectomees. It is composed of part of an article by Dr. Glenn Peters explaining what you need in the way of moisture and why. I added to that some practical instructions telling how to do what he suggests. If anyone wants to reprint and use it as a handout, you are welcome to do so.

 

     ***************************************************************

 

IRRIGATION AND HUMIDIFICATION

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 are left without this normal filtration/humidifying system. Your lungs respond in a very normal and protective manner by producing an increased amount of mucous to filter and humidify the air that is 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? Everything possible to increase the amount of moisture in the air you inhale. Irrigate your stoma with clean tap water or saline solution four times a day and it will help your breathing. You will be taught how to do this in the hospital, but it is very simple. Fill a syringe with two to three cc’s of water, take a deep breath and squirt some of the water into your stoma. You will cough and you are supposed to. If you cough before you get much water into the stoma, repeat immediately. You are softening any bits of hardened mucous or blood and coughing it out. This is extremely important.  

A cool mist humidifier in your bedroom will help you to breathe moist air while sleeping. Put fresh water in daily, and every week or two, to prevent bacteria, clean and soak the tank with a solution of one teaspoon of bleach in one gallon of water. Rinse thoroughly before refilling. 

Some tricks for retaining warmth and humidity in your trachea and lungs include wearing a stoma bib, but you can also wear a scarf, a turtle neck shirt or sweater. Foam stoma protectors are also available. Covering your stoma allows you to conserve the moisture that is trying to leave your lungs as you exhale. You might also wear a soft stoma vent (see your MD for the proper size). A small plastic spray bottle filled with clean tap water can be used to create a mist to dampen your stoma bib. It becomes a portable humidifier.

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.                        

MOISTURE IS THE KEY!!          

 

Tip of the Month from Paul Galioni I used a cold water humidifier and taped the long oxygen tube (about 2 inches in diameter) that they used in the hospital to the spout and then loosely tied it to my chest just below the stoma, using the collar from the hospital. I got fresh, cool, moist, air delivered directly to the stoma. This can be used any time you have a respiratory problem and need more humidity.

 

 

                           

To stimulate more saliva to aid in chewing, swallowing and digestion, drink 2 or 3 glasses of water an hour before mealtime. This will give your body the moisture it needs to produce the saliva.

 

Linda Lucas, Staff Herbalist, The Compounding Shoppe, 3349 Independence Drive,

Homewood, AL 35209

 

 

Lary Lib? by David Blevins David6511@aol.com

The Sunday afternoon meeting had not yet begun and people continued coming into the hospital community meeting room singly and in pairs, greeting and chatting with each another, and gradually settling into their metal folding chairs. Dan, a sandy-haired middle aged man who was dressed in a colorful golf shirt and matching slacks, was standing next to Paul, an obviously more elderly gentleman who was still in his Sunday “go-to-meetin’” clothes. Dan was not wearing a stoma cover, while Paul’s shirt and tie concealed his own.

Dan was saying to Paul, “My attitude is this: I am a lary. I breathe through a hole in my throat. If someone doesn’t like looking at my stoma, that’s tough. They can look the other way, or get used to it!” He added, “I think that people need to adjust to seeing others who look different, learn to deal with them, and maybe learn something about our condition. They can’t do that if you are trying to be the Invisible Man. I am who I am and I’m not ashamed of myself.” He chuckled and added, “But on the other hand, I seriously doubt that I will be marching in parades any time soon carrying a sign for ‘Lary Lib’ or burning my stoma covers in protest. But, Paul, if I need to, or even just feel like removing my stoma cover in public, I will take it off and, I might add, I have from time to time.”

“I don’t feel that way at all”, Paul replied. “I guess I want to blend in. Aside from the fact that I always keep my stoma covered for comfort and health reasons, I think that, if I could, I would be the Invisible Man, at least as far as having my stoma displaying that I’m a laryngectomee. That is also why I am going for the TEP prosthesis even though I don’t really need to communicate any better than I do now. I’m adept with my Servox.  My ideal goal would be for people to not even know that I am different. I guess I feel most comfortable when I don’t stand out in a crowd and call attention to myself.” “Besides”, he continued, “I think it is common courtesy to try to avoid offending other people, and the sight of an uncovered stoma can be pretty shocking to people who are not used to it.” He added with a smile, “Hey...an abrupt coughing spell could also send something flying out of my stoma and through the air at some innocent victim!” He grew more serious and added, “But I will admit to you that I am a little ashamed about one thing. My smoking almost certainly caused my cancer but some people want to pin a medal on me for what I have endured. I feel my wound is a self-inflicted one, not one deserving of a medal.” He concluded, “I want to be treated like anyone else, neither worse nor better. It is just realistic to recognize that people have always been prejudiced against those who are different, and I don’t think I am likely to change their thinking by flaunting my condition and forcing them to look at my stoma.”

The conversation above did not actually take place, although it could have, since it reflects two very differing perspectives on how we view ourselves as laryngectomees, and present ourselves to those who are not. I think that both of the above positions are, in part, “unhealthy” ones, although I have certainly felt the feelings and had the thoughts represented in both sides of this fictitious conversation. I know that I have to continue fighting that desire to be the Invisible Man and must speak up more often regardless of any concern I have about being understood or embarrassment I might have at attracting attention to myself.

As for feeling proud of who I am, I choose to be proud despite my laryngectomy and certainly not because of it. Like Paul, I do not feel noble, brave, or deserving of accolades for merely deciding to survive. The adjusting, accepting, refraining from complaining too much, and smiling on occasion was my way of getting through what has to be done. While I must admit to being periodically discouraged, I will not give up. I know that I am much more than my laryngectomy and I am hoping that soon I will see myself and be seen by others as just simply David, rather than “that guy who talks funny and breathes through his neck.”

Finally, I think I will continue to keep my stoma covered. In addition to keeping harmful things out and heat and moisture in, I have no wish to frighten small children and animals with the hole in my neck! Furthermore, I am quite certain that I will not be burning my stoma covers or marching in demonstrations any time soon, since I am coming to think that “Lary Liberation” may be every bit as much in our own heads and hearts as it is in others.
 

David had his laryngectomy in August 1998 and lives in Montgomery, AL

 

A Recent Visit To “ER”!                                 By Scotty Chandler

First thanks to all of you for your thoughts and prayers during my recent hospital visit.  Any hospital emergency visit is scary, at best. In my case the heart attack or myocardial infarction (two of them and three operations in 2 days) was caused by a clogged artery and a blockage causing damage to the muscle (heart) itself because it can’t get oxygen. This artery has to be opened “immediately” or else damage gets worse or death occurs. There is a ‘clot buster’ injection that immediately starts a super-thinning of the blood which can lead to a profuse amount of bleeding from the stoma or lungs. In my case, I was already coughing slight blood specks , which is normal for me at this time of year. So when the shot came, so did the gushing from the stoma. It was up to me to cough the blood out or have someone who could suction it and I’ll bet not 1 in a 100 in ER would know what to do even when trained properly in their schooling. I more or less had to tell the excellent ER doctor, “You take care of the heart. I’ll take care of the breathing and bleeding and let you know if I need help.” The blood begins to gel much as mucous does as you breathe and air hits it. You can’t ‘blow’ it out thus you need to irrigate (dilute it with water) to thin and cough it out. I had to make it clear when the blood started coming up that I had not taken medications for pain or anything that might be mind or muscle altering. I could take care of the blood and be able to communicate with the eight or so nurses by using my Servox. Scary as hell even in an ER with a laryngectomee poster that I had posted there a year ago.

 

During this time in the ER and during the bleeding for about a two and a half day period, the Servox was my “Best Buddy”. When the blood hits the air, it gels and and starts to SCAB over the hole in the TEP prosthesis thus closing off any means of communicating other than hand signals. Believe me, trying to write notes as an alternative speech when you’re weak or scared is not too good . Waving your arms in monkey motions are often misread. To those of you who think an electro-larynx is unnecessary since you speak clearly with your TEP or using ES, you had better think again.

I am three and a half years post-op and speak very well with either TEP or EL and this is the first real emergency where I’ve HAD TO HAVE alternative speech. The Orange Card from ACS and the Emergency Card from Lauder showing Neckbreather and the placement of the TEP, allowed me to explain “how” and “what” quicker and more clearly. The Servox helped me to tell them what I needed for my part of the job.  This helped to prevent drowning in my own blood or other serious problems if the prosthesis were removed.

I’ve heard people say it was trouble to keep up with their Servox. Trouble to keep up with My Buddy? I don’t think so!

 

 

Bo-Tox and the Laryngectomy Patient by William Carroll, MD

 

Bo-Tox has been in the news a lot recently. Bo-Tox is short for Botulinum Toxin, which is the bacterial by-product responsible for the dreaded disease botulism. The substance blocks the activity of skeletal muscle and in large doses causes complete paralysis.  Bo-Tox has been used medically in small and well-regulated doses to treat spasms of facial, neck and laryngeal muscles. Cosmetic surgeons have begun using Bo-Tox to get rid of frown lines just above the nose and the “crow’s feet” or squint lines that appear at the outer corners of our eyes with aging.

 

There may be a new application for Bo-Tox for the laryngectomy patient. As you know, tracheo-esophageal puncture (TEP) with insertion of a speech prosthesis has become a mainstay for voice rehabilitation after laryngectomy. Occasionally patients are unable to produce sound when the TEP is placed. One of the causes of lack of phonation in this situation is spasm of the pharyngeal muscles (cricopharyngeus spasm). The traditional method of dealing with this problem has been a surgical procedure called myotomy.  Physicians are beginning to try Bo-Tox injections into the muscle to block the spasm and hopefully avoid surgery. Our colleagues at the University of Iowa have seen encouraging early results with this treatment for a small group of patients. At UAB, we are beginning to use this technique as well. No one knows yet if Bo-Tox for cricopharyngeus spasm will become routine. There will very likely continue to be those patients who require surgical myotomy. We’ll keep you posted as we learn more about the applications of Bo-Tox for laryngectomy patients.

 

Stand Straight, Breathe Easy, and Talk Better

by Pat Sanders

 

We are often judged by how we look. If you are not well or are feeling discouraged, it can be seen in your drooping posture as though it is just too much trouble or too uncomfortable for you to stand straight. Sometimes this becomes a habit and then, as bones and muscles settle into that position, we look older and sad. Do you realize that when you slump over with your back and shoulders hunched, you not only look dejected and tired, but you are shorting yourself on oxygen, the lack of which can make you feel dejected and tired? You are compressing your lungs and making it difficult to take a deep breath. Without full lung expansion, you may even be subject to shallow breathing, hyperventilating and dizzy spells.

 

An even worse position for a laryngectomee is having your head jut forward. American Health Magazine has noted that the “forward head”, which was a prominent feature of Neanderthals, has become common in our civilization. This position can be caused by reading, watching TV, working at a computer or desk, or just slouching all the time, and can contribute to tension headaches, vision problems and neck and jaw pain. In addition, many of us jut our chins in order to find the right spot for the electrolarynx or when occluding our stomas for TEP speech. We push forward with our necks and chins in order to get a better seal.

Good posture is not the rigid head and shoulders of the military bearing, but a positioning of the head so it sits aligned with the rest of your body. Probably the simplest and easiest way to align everything is to start with your head. Pretend you have a string attached to the center of the top of your head like a puppet and that string is gently pulling straight up. Without any other conscious action, you will find your spine has straightened and your head, shoulders and hips are aligned. The best part of this way of achieving good posture is that it can be done as you walk, stand, sit, or drive.

We, who have been given a second chance to talk, need to get the best voice we can.  Professional vocal coaches will tell their clients that to get the most out of their natural voices, they must develop good posture and proper breathing. They start with those before they even do a vocal warm up. Every site that was on my Internet search for improving voices called for the above beginning and, on some sites, a third suggestion was using relaxation techniques. Our voices will be clearer and stronger if we practice the same way professional singers and actors do.

So, take on the physical characteristics of a puppet and dangle from that mental string at the top of your head, breathe deeply and let your belly (not your chest) move out as you breathe in. See if you don’t look better, feel better and sound better!

 

DO SOME NECKING FOR YOUR HEALTH!

 

Women are taught, and encouraged, to check their bodies for lumps, bumps, and any changes. We are told to be aware of, and examine all moles or blemishes anywhere on our bodies for changes in size, shape or color. Good advice! We are more qualified to notice these differences as we examine our own bodies because we live with those same bodies every day.

This self-examination should be done on a regular schedule once a month. A good way to remember when to do it is to select the day corresponding to your birthday. My birthday is March second, so on the second of each and every month I examine my body for lumps, bumps, and any other physical or visual changes.

Laryngectomees should take advantage of this advice, plus they should check their necks at the same time. This is very important for the laryngectomee for early detection of any problems. The entire neck should be examined, and it should be done in front of a mirror.

1.     Visually examine the stoma. Note the size, shape, and condition of surrounding tissue to be compared to the previous or next examination.

2.     Look for any swelling, discoloration, puffiness, hardness, or rough texture anywhere on the neck. Use a hand mirror with a wall mirror so you can examine the sides and back of your neck.

3.     Note any soreness or lumps under the skin. Using the first three fingers of the hand, “walk” up and around the neck. Put just enough pressure that you can feel any lump that may be under the skin, but not so much that it will mask the feel of any bumps that may be there. Start the examination as low on the neck as possible and systematically work your way up and around. If a lump is felt, note the size. Is it the size of a pea or a walnut? Where is it located? Think in terms of where it is in relation to the stoma.  Example: 1 inch to the right and up ½ inch. Write it down or draw a picture.

4.     If a lump, bump, unusual soreness, or any other dramatic visual or physical change is noted --- NOTIFY YOUR DOCTOR IMMEDIATELY!!

 

Annette Miller,

SLPWest Florida Rehabilitation Institute

Pensacola, FL

 

 

HOW I BECAME YOUR HEADLINES EDITOR

(a mini-bio by Pat Sanders)

 

 

In August, ‘93, a nodule was discovered on my vocal cord and I was sent to a voice therapist for a hoarseness that wouldn’t go away. It helped, but it didn’t go away completely.

Earlier that year, I had been taking a blood pressure medication (ACE Inhibitor) that made me cough and clear my throat all the time. I thought it was just the medication and the worst allergy season I had ever had. Even though I was taken off of that medicine, it takes a while to recover, and I still continued with my usual light smoking, drinking, and a lot of voice strain.

I was in Seasoned Performers, a volunteer group of actors who took plays to nursing homes, schools and churches. I was reading for the blind on the Radio Reading Service and was having a fine time in my first year of retirement. Swimming at the ‘Y’ 2 or 3 times a week had me in the best physical shape I’d been in for years or so I thought!

January, ‘94, I had my yearly mammogram as part of my checkup. Two days later my running and playing hit a brick wall. I had breast cancer. It had been detected early and after a lumpectomy, removal of lymph nodes and 33 treatments of radiation, I was prepared to take off running and enjoying retirement again...if I could just quit being so very tired.

By August, I had been attacked by sinus, flu, colds, or whatever, and I decided to go back to the ENT for a special look down my throat since the hoarseness was not only back but getting worse. It was a polyp, but he was 98% sure it was not cancer. My question was, what if I’m in the other 2% and he reassured me that he didn’t think that would be. He said that radiation almost always took care of anything this small.

We didn’t do the biopsy until November. It was squamous call carcinoma and I was sent back to radiation for another 33 treatments, this time on my throat. In my case, radiation didn’t get rid of the cancer and I was referred to Glenn Peters, the Director of Head and Neck Surgery at University of Alabama in Birmingham, where he performed another biopsy to take a look around and see if he could do a partial.

You’ve heard people talk about what their choices are. Well, as soon as I was awake, Dr. Peters was standing there to say, it’s got to be a complete laryngectomy. Do you want Monday or Friday?? Some choice! I chose Friday, March 31, 1995.

I went home on the 5th day with drain and feeding tube in place, and my son installed my computer, which had arrived from Gateway while I was in the hospital. I didn’t even know how to type. I had asked that I be taught the mechanics of how to write a letter and either print or fax it and how to play solitaire.

A friend stayed with me for a week and then I was pretty much on my own except when I asked for help. I practiced with the computer. It’s surprising what you will learn to avoid being silent and this was my way of being in touch. I didn’t even know then what it meant to be “online” and now I am active in two online groups for larynx cancer patients and I am happy to be corresponding with friends all over the world.

It’s now been over four years since my laryngectomy and I chair the support group at Kirklin Clinic/UAB. Less than a year after my surgery, I had started a newsletter, HeadLines, sent out monthly by our local chapter of the American Cancer Society.

I have been happily ‘single again’ since 1975. My only son and his family live here in Birmingham and have been right here for me whenever I needed them. I have a multitude of friends from all of the activities over the years, and am really enjoying life. 

One last note: I have recently started, very cautiously, to swim again. My “Crawl” stroke leaves a lot to be desired since it is a one armed effort. The other hand is busy occluding my stoma so I don’t drown!

Tip of the Month  

Dick Williams writes: I have this “ Pill Crusher “ left from those couple of months I had to eat thru a tube. The Pill Crusher is a handy little gadget and it is available from any Pharmacy. (Editor’s Note: Ask your pharmacist if this is a pill that can be crushed and taken safely)

 

Dr. Peters, I hear people talking about a ‘flap’. Are there different kinds of flaps? What is a stomach pull-up or a jejunum? Is it possible to have a TEP after these surgeries?

Let’s discuss flaps, stomachs, jejunums, and other ***chitlins. We need to begin this with a brief review of the laryngectomy. Remember that the larynx sits in the throat or pharynx and when it is removed we have to close the pharynx so you can swallow again.  The most common way to reconstruct this area is to simply close it with several layers of sutures, thereby creating a tube through which saliva, solids and liquids can pass. Dr.  Carroll has discussed this in one of his earlier pieces. (Swallowing Difficulty, HeadLines, Dec 1998) This is called “primary closure”.

Now, the problem comes when we have to deal with larger tumors or tumors that arise on the side or the back of the larynx. This creates a situation where we do not have enough tissue to close the pharynx primarily. In this case we borrow tissue from elsewhere in or on the body to supply this extra tissue needed for closure. This tissue, transferred from another site, is generically called a “FLAP”. So what about these flaps? Historically speaking, we started with skin flaps from the neck and upper chest.  We then moved on to flaps from the upper chest, which included a portion of the large muscle on the chest called the pectoralis major. From there we went to using the entire stomach which was turned into a tube and used to recreate not only the throat but also the entire esophagus as well (the gastric “pull-up”). Then we finally got into what are called “free flaps”. These are pieces of tissue which are completely detached from the body—the “free” part—and transferred to the neck where they are hooked back up using an operating microscope. The jejunum (a segment of small intestine ) and the radial forearm flap are the most commonly used in this category.

Lastly, the question has arisen as to whether or not a TEP can be used in patients that have had flap reconstruction following their laryngectomies. My answer has always been that this needs to be individualized on a case by case basis. I have put TEPS in just about all of the flaps that I have mentioned above. This includes the gastric pull-up and the jejunum. We are just a little more careful in evaluating patients for this device after the flaps, but it can be done with good results.

Glenn E. Peters M.D.

Director, Division of Otolaryngology - Head and Neck Surgery

University of Alabama at Birmingham, Birmingham, AL

 

***chitlings - (pronounced chit-lins) Southern talk for chitterlings (entrails). From the time of settling of the South, nothing could be wasted and the entrails of the pig were cleaned and used as food prepared in various ways, such as sausage casings, but they were often fried and considered a delicacy.

 

 

New Lease On Life?                         By Rick Panger (rickpanger@yahoo.com)

I’m 61 years old and live in a Chicago suburb. When the throat doctor told me, four years ago, that I had a tumor on my epiglottis and it was surely cancerous, I told him I wanted a second opinion. “Okay,” he said. “You’re ugly, too!”.

Encouraged by these words, I embarked on 35 doses of radiation. The treatments left me with few taste buds, almost no saliva and a tumor on my epiglottis. My NEW doctor (I ain’t 100% dumb) said, first, let’s try a partial laryngectomy. If we’re lucky, he told me, you’ll be left with your natural voice and all you’ll need do is learn a new way to swallow. Fine, let’s roll the dice, said I. So we did—and they came up snake-eyes. :)- No voice, just a whisper, and for seven months, never did learn to swallow. I’ll tell you, I was getting those g-tube blues!

Finally my doc said, “Let’s do a complete. Your voice can’t get any worse than today’s whisper, and you’ll be able to eat again.” Well what the hell, I thought. I’d been thinking of taking gas anyway—might as well make it ‘anesthesia’ gas - one more time.

That was in early December,1996. Two weeks later, I was talking out loud with my new TEP voice. On Christmas day, I ate my first big meal in almost two years. To celebrate New Years, I took all the stuff I’d ordered from the Hemlock Society and chucked it in the dumpster. New lease on life? I guess!.

Right now (Aug. ‘99) I have a Blom-Singer indwelling prosthesis that has lasted five months without replacement and is chugging along fine. I wear a hands-free valve from dawn to bedtime, every day, and hardly even think about it any longer. My voice is slightly hoarse and not too crisp but everyone seems to understand me okay (except for “h” sounds). Those who wonder, I tell them the doc promised me a voice like a movie star: I was expecting Robert Redford, he was thinking Marlon Brando.

I’ve been single now for 24 years. After my divorce, I raised my three children alone, right through college for each of them, and each has their own family now, replete with kids. Other than time I spend with them, and time with Margret (my long-time significant other), most of my life is working. I own a semi-thriving travel agency and it soaks up every minute I’m willing to give it. For entertainment, I’m a reader, and usually run through three books a week, mostly pulp fiction without redeeming value. I once criticized people who spent hours daily watching trash on TV— until I realized the only difference between them and me was the medium.

I guess the one big disappointment concerning my laryngectomy is that since the last operation, I’ve been unable to play the piano.

 

THE THIRD VOICE

 

by Frank Morgan     SilntKnyt@aol.com

Mario Lanza became my idol, when I was very young

I tried to emulate his voice, knew every song he’d sung.

In literature, Keats and Shakespeare I studied very hard,

My voice would swell and passions tell, as I would quote the Bard

But reading books and learning much weren’t total education

For music’s art would play its part, I sang with great elation.

In prose or verse, or tenor soaring, my voice was my ID

The accent sweet, the tone unique, told all that I was me.

Then Cancer struck that fragile chord, not just once but twice!

Eating away, eroding, burning. Rewarding the smoking vice.

Cobalt beams would kill it dead, that very first time around,

Second time, the surgeon’s knife, and I’m left without a sound

Desperation, fear and dread filled each day of my new life

As I tried ways to find out how to overcome my strife.

I had to learn to speak again, but how when on ones own

I was a freak, no one to teach, this silent fool...alone

Then slowly, slowly words came out, a drone for sure, it’s true

But language graced these lips again, so how could I stay blue?

I’d used a tool, vibrating source, to imitate a voice,

Then I discovered gulp and speak......I had another choice

Where once I had a single voice, I find I now have three!

The third came with my keyboard “chord” and screen of my PC.

The latest, loudest of them all, gives power to speak to nations,

And sends out notes of hope and cheer to newer cancer patients.

The message that I’ve tried to send, in this short history,

Is one of faith and hope to all who sadly follow me.

The surgeon’s knife will take but flesh, and leave you with your life,

So take that gift and use it well, tell others of your strife...

For we are teachers, you and I, all laryngectomees...

Who’ve proved to all that we have beat the dread Big C disease.

 

Having lost my vocal chords to the surgeon’s knife following a second bout of cancer of the larynx, I have attempted to portray a little of what I experienced. I had help in this endeavor. I have a friend who is also a budding writer. Her name is Barbara, and she gave me invaluable editorial input. The words and thoughts are mine, the presentation is mostly Barbara’s. 

 

 

Doctor Peters, we know a PEG tube is often used for a throat cancer patient during healing or while having difficulty swallowing. We would like some insight into three problems.

1.     If, over a period of a couple of years, a patient has repeated dilations, manages soft food occasionally, but is on mostly a liquid diet, what are the choices to be able to eat again?

2.     When leakage occurs, is there a good way to stop it or a product to put on the skin to avoid excess irritation?

3.     When you are eating easily and it is time to remove the PEG tube, are there complications involved in the healing after removal of long time PEGs? If it doesn’t close up properly, where do you go from there?

 

Answer:

Okay gang let’s talk PEG tubes. You have been gracious enough to send me some questions so I will do my best to answer them.

1.     The first question concerns a chronic problem with difficulty swallowing despite repeated dilations. Let me give you my opinion about dilation. Basically, I don’t think it works. Let’s look at the problem. You have a round organ such as the esophagus.  Around this circular organ you have scar tissue. The most basic thing that scar tissue does is to CONTRACT. When you have contracture around a circular organ you get narrowing or stricture. Now let’s look at what happens when you dilate something. What you do is forcibly break up the scar causing a new wound. This results in quess what?  That’s right, more scar tissue. And what is scar going to do? CONTRACT!!! Therefore, you have set up a vicious cycle of scar, contracture, more scar and more contracture.  Hence, no improvement. It is my feeling that to truly improve the situation, you have to bring in new tissue that is not affected by this cycle.

2.     When leakage occurs around a PEG tube it is always best to make sure that the tube is tight against the body wall. Make sure the bumper or balloon inside the stomach is working properly and the outer flange can be snugged up to the skin. Not too tight, but just right. A single layer of gauze is usually enough to catch any drainage.

3.     Generally PEG tubes can be removed in the office and the wound will close on its own in 2 to 3 days. It is very rare for the fistula (ya’ll remember what a fistula is from our last encounter) not to close, but if it doesn’t, it is a matter of a limited out-patient surgery to rectify the situation.

 

Glenn E. Peters M.D

Director, Division of Otolaryngology - Head and Neck Surgery

University of Alabama at Birmingham, Birmingham, AL

 

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The Role of Nutrition in Building the Immune System

By Rebecca Ford, RD, LD

 

How can even small deficiencies of vitamins and minerals weaken our ability to fight cancer? The immune system provides one the body’s main defenses against cancer and in persons with cancer, the immune response is severely reduced. In order to work correctly, our bodies need over forty nutrients everyday. Some nutrients like vitamin A, C, E, B12, zinc, selenium and protein help to make our immune system strong.

Should we take these nutrients in supplement form? Yes and No! It is wise to be careful when taking nutrients in a pill form. Too much vitamin A, selenium, zinc and iron may actually weaken the immune system. Ideally, we would get all the nutrients we need from our foods! Since we do not always eat ideally, a single multivitamin, containing 100% of the Recommended Dietary Allowance (RDA) for vitamins and minerals, is recommended as a safety net. It is still extremely important to eat foods high in certain nutrients because foods contain so many other healthful compounds that cannot necessarily be placed into pill form.

In order to strengthen our immune system to fight infection, eating healthy foods is essential. Food sources high in vitamin A include carrots, sweet potatoes, spinach and pumpkin. Foods high in vitamin C include citrus fruits, sweet peppers, and green leafy vegetables such as broccoli, spinach, brussels sprouts, kale and turnip greens. Good sources of vitamin E can be found in such foods as nuts, seeds, shrimp, wheat germ, cabbage, sweet potatoes and asparagus. Oils are rich in vitamin E, especially soybean, safflower, cottonseed and corn oils. Vitamin B12 can be found in fortified cereals, chicken, fish, meat and milk. Foods that are a good source of zinc include oysters, seafood, meat and dairy products. Looking for a good selenium source? Try seafood, whole grains and Brazil nuts! Need more protein? Cooked beans and peas, tofu, nuts, seeds, peanut butter and eggs are all great sources of protein.

Our immune systems are remarkable defense mechanisms. Eating a healthy diet and taking a multivitamin are two great ways to strengthen the immune system. Start today, take charge of your immune system and give yourself that boost you’ve been looking for!

Rebecca Ford is a Registered Dietitian and serves as Coordinator of the University of Alabama at Birmingham’s EatRight Cancer Prevention and Support Program. She coordinates The UAB EatRight Cancer Prevention Tour, which is a series of monthly Cancer Prevention workshops. Upcoming workshops, include Herbs, Spice and Everything Nice in September, The Joy of Soy in October, and The Prevention Connection in November. Each workshop includes a presentation by a Registered Dietitian as well as a cooking demonstration by a culinary expert!

* * * * * * * * * * * * * * *

 

When I was “voicing” concerns about my upcoming TEP to my daughter, she said something that made me feel pretty good. She said, “Mom, you remind me of a cat, because regardless of what you’ve had to go through in life you’ve always found a way to land on your feet.” I’m sending on to share because I truly feel that being survivors of cancer we all do this and in the process of fighting our fight we do generate strength to those around us----even though sometimes it may not be said. Sometimes we have good days and sometimes not, but the bottom line is that we do what we have to do to get through and that, my dear friends, takes strength and courage. Sent to Webwhispers by Marie Sherwood Mariah95@aol.com

 

TIP OF THE MONTH


If your doctor has prescribed Prilosec or Prevacid for GERD (gastroesophageal reflux disorder or commonly known as acid reflux), the time that you take your medication is very important. The Johns Hopkins Medical Letter, Health After Fifty, recently suggested that these medications are more effective if taken 15/30 minutes before breakfast. It seems they work best when gastric acid is being actively secreted.

Eating stimulates the acid. If you don’t eat breakfast, I would suggest you take it 15/30 minutes before lunch or supper. Take it with the same meal every day.

 

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Cleaner Beds = Cleaner Lungs By David Blevins

Keeping our beds and the areas around them clean can be especially important for the laryngectomee. At seven or eight hours at a stretch, seven days a week, and 365 days a year, most of us spend about one third of our entire lives in bed.  This is a lot of time spent in a pretty small space. For the laryngectomee, keeping this small area cleaner can help our breathing and keep us healthier. The quality of the air we breathe is particularly important to us now since we have lost the function our noses used to play in pretty much automatically warming, humidifying, and filtering the air we breathed. Now, we have to more consciously tend to those chores ourselves by the things we do to condition our own air supply.

Those who are in the habit of showering or bathing before bedtime have the added advantage of going to bed clean, and their beds should tend to stay a little cleaner as a result. But even if you are a morning showerer/bather there are still a number of things you can do to keep the bed area cleaner.

An obvious one is to keep the furniture dusted and the floors in the bedroom vacuumed. If you have the choice, bare floors are probably a better bet than rugs in the bedroom since rugs trap dust and other microscopic particles, which can be released back into the air as we move about. Another fairly obvious suggestion is to wash and change the sheets, pillowcases, mattress cover, and bedspreads or blankets more often. A less obvious suggestion is to vacuum the mattress itself when the bed is stripped.

The reason for vacuuming the mattress is to remove as much “dust” from these areas as possible since a major component of household dust is tiny particles of skin which flake off of us continually, and the microscopic life which feeds on it . . . dust mites. Those who have pets have the added problem of airborne pet fur and dandruff to contend with. In addition to being a source of allergic reaction and asthma for some people, these pollutants just add to the work our lungs have to do to dispose of them. Reducing pollutants of all kinds should also reduce excessive mucous production.

Two final thoughts. An electronic air cleaner in the bedroom can make a major difference in air quality. Keeping clean filters in it and in your furnace/air conditioner can also make a significant difference in air quality. Finally, wearing a foam filter or other small mesh stoma cover at night while we sleep can serve the dual purpose of filtering our air and, if we dampen it with some water, also double as a personal source of humidity.

Whether we are larys or not, doing just a few things to improve the quality of air we breathe can make a significant difference in our comfort and health.

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Joe, a laryngectomee, was flying with his wife in route to a long awaited vacation. The plane ran into some turbulence and the “fasten your seat belts” light came on. Several minutes later all the little oxygen masks dropped down from the ceiling. Joe very calmly took his mask and placed it around his neck so that cup covered his stoma. Being a TEP speaker he was now unable to occlude his stoma to speak. The flight attendant came up to Joe and said,” Sir, you have to place it over your mouth and nose not around your neck.” Joe’s wife, speaking through her mask said, “That’s all right, miss. He’s a laryngectomee.” After a long pause the flight attendant said, “I don’t care what his religion is - he has to put it over his face like everyone else.”

Jack Henslee, jhenslee@softcom.net (From the Humor Section of WebWhispers)

 

PROSTHESIS SELECTION

A. Concerns and Considerations

As technology and our understanding of the mechanism of tracheoesophageal voice have advanced, a variety of prostheses have become available. Each device has distinct advantages and disadvantages, and there is no single prosthesis that meets the needs of all patients. Furthermore, the specific requirements of an individual patient may change over time, and the prosthesis that is selected initially may not be appropriate for long-term use. The clinician, in consultation with the laryngectomee, must weigh several factors to determine which device will offer the optimum benefit for a specific individual.

The primary concerns in selecting the prosthesis type are to maintain the patency of the puncture tract and promote healthy tissue of the tracheoesophageal wall.

1.     A 16 French duckbill style is often selected for the initial fitting of the voice prosthesis and when there is a concern for edema of the tracheoesophageal wall, as may occur during radiotherapy. The smaller diameter is preferable until the puncture site heals. The contour of the distal tip permits smooth insertion, and its slightly increased extension into the esophagus helps guard against underfitting and stenosis of the esophageal side of the puncture if edema occurs.

2.     If the tissue of the tracheoesophageal wall has been heavily radiated or is weakened due to poorly controlled diabetes, nutritional imbalance, or other medical factors, a 16 French prosthesis made of soft silicone should be selected, because the larger, stiffer devices may cause irritation and/or dilation of the tract.

3.     The thickness of the tracheoesophageal party wall may limit the choice of prosthetic devices, because some styles are not manufactured in extremely short or long lengths.

4.     For patients with a narrowed esophagus, a duckbill style prosthesis may impinge on the posterior esophageal wall. This may prevent the prosthesis valve from opening, resulting in poor vocal quality, or alternately, it may cause the prosthesis to remain in the open position, resulting in leakage through the prosthesis.

5.    When all requirements have been met to maintain the patency of the puncture tract and ensure the viability of the tracheoesophageal tissue, the clinician should consider the

 

aerodynamic characteristics that will promote a satisfactory vocal quality with a

minimum of effort. The aerodynamic specifications of each device are available

from the

manufacturer so that accurate comparisons can be made. Some general guidelines follow.

a.     The duckbill type devices typically have a higher resistance to airflow than most of the hinged or ball valve devices, resulting in a voice of lower volume. However, the increased resistance may be beneficial for patients who experience excessive gas that is due to the inhalation of air through a prosthesis of lower resistance during quiet respiration.

b.     The hinged and ball type valved prostheses (sometimes marketed as “low pressure” prostheses) typically have a lower resistance to airflow and generally result in a louder vocal volume and less respiratory effort.

c.     The larger (20 French) diameter devices result in greater airflow through the puncture tract, requiring less respiratory effort and resulting in an increased phonatory volume.

 

6.     If there are any concerns regarding the patient’s ability to care for the device, an extended wear prosthesis should be selected. These prostheses are typically less likely to dislodge accidentally due to the design of the esophageal retention collar and they require infrequent changes by the speech-language pathologist or physician, reducing the patient’s responsibility for maintaining the device.

7.     When there is limited availability of medical support services in the patient’s community, an extended wear device that can only be replaced by a physician or speech-language pathologist may represent a poor choice of prosthesis. Devices that are less commonly used, such as some of the imported prostheses, are contraindicated for patients who travel extensively and may require urgent support services while away from home.

8.     The ease of insertion is maximal for the duckbill style prostheses, owing to the rounded distal tip. The trauma of insertion can be reduced for some of the hinged valve prostheses, which have a blunt tip, by use of a gelatin capsule system that encases the esophageal retention collar and contours the distal tip.  The “retrograde insertion” required for some of the extended wear devices, by which the prosthesis is drawn through the oropharynx and into the puncture tract, can be uncomfortable for many patients, necessitating the use of topical anesthesia to reduce gagging. This placement technique is useful however, when there is a separation of the tracheoesophageal party wall and a concern that the prosthesis is not completely through the puncture tract when using the standard “front-loading” insertion technique.

9.     In some circumstances, economic factors may influence the choice of prosthesis. In calculating the total cost, the clinician will need to consider the retail price of the prosthesis, as well as the typical longevity of each device.

 

Excerpted from:

Chapter 6, “Tracheoesophageal Speech” by Carla DeLassus Gress, ScD

In CLINICAL MANUAL FOR LARYNGECTOMY AND HEAD/NECK REHABILITATION

By Janina K. Casper, PhD and Raymond H. Colton, Ph.D.

Singular Publishing Group, Inc

San Diego, 1998

 

 

Seeking a second opinion: “Before I make my decision..”        Joanne F. Goldberg

In this explosive information age, it would be humanly impossible for any one person---physician or patient---to remain entirely abreast of every new development, and the question of when to seek a second opinion arises frequently.

What is the purpose of a second opinion? For some people, it is a perfectly justifiable effort to confirm a serious diagnosis. For others, it is an imperative to explore treatment options from the differing perspectives of different doctors. For still others, a second opinion is what it was never meant and ought never to be: shopping around for a “better diagnosis”.

Some physicians who conduct clinical trials are able to offer newer---though not always better---treatments which cannot be made generally available to the public until those treatments have been studied and proven effective. In the event of a serious disease, it might be wise, through a second opinion, to explore such clinical trials and weigh them against existing treatments, as they may make up part of the range of treatment options from which you can choose.

One of the greatest obstacles in deciding to seek a second opinion is finding the right language to tell our physicians that, though we respect and trust their judgment, we would like to have the added consideration of others in the field, any of whom might have something to add to the understanding of our situation.

Consider the following approach to discussing a second opinion with your physician:

“Before I make my decision, I would like to get a second opinion, in order to satisfy myself that I have examined every option available to me.”

Using this approach, you first assert your intention to take responsibility for the choice of your treatment; your doctor should understand this and will appreciate that the final choice of treatment is your own. Second, you clearly state your desire to seek another opinion, leaving no question as to your purpose. And finally, you explain why you wish to pursue this path, without suggesting any lack offaith or comfort in your own doctor’s abilities.

Interestingly, while most of us patients sweat it out, worried that we’ll offend our doctors or wondering if they’ll ever welcome us back after we get that second opinion, most doctors will respect our wishes without discussion or argument. The American College of Surgeons, for example, advises, “Consultation has always been a part of good medical practice, and a competent physician should not be insulted if you decide to get further advice.”

In most cases---for example, 90% of those seen at one specialized second opinion clinic of a major cancer center---the second opinion will confirm what the patient has already been told. In some cases, a second opinion may uncover additional treatment options. In all cases, if you have any doubts or a nagging feeling that there may be something else for you to consider by way of your medical care, a second opinion will satisfy your curiosity, at least, and leave you with a wider range of options at very most. Always remember that the choice is yours.

HELPFUL HINTS

Here are just a few of the new hints available in the Travel category on WebWhispers.

TRAVEL BY CAR

When you are planning to travel by car, you might want to consider the following list of “items and hints” to make your trip easier and enjoyable. Besides the usual things everyone puts in the trunk of the car or glove box (road maps etc.), We laryngectomees need to add to our wardrobe and toiletries. Of course we know to bring our “every-day” items but you might want to bring the following with you in the car:

A small misting/spray bottle, filled with clean water, to spray the stoma or stoma cover to provide humidity. It can also be useful for cleaning hands or face, while on the road.

A roll of paper towels is handy and better for stoma cleaning than tissues since there is not as much fuzz.

The basics, a pad of paper and a pen, just in case your other method of speech fails or it is too noisy to talk.

A hand held mirror, normal view on one side and magnifying on the other. This could be

particularly helpful when lighting is not great and you

want to check your stoma.

A small cooler with some water bottles, especially for those of us who had radiation, to combat coughing. A thermos of hot coffee if that helps coughing better than cold water.

Have a kit containing the supplies you use to take care of your laryngectomy needs right near you so it is easy to grab on stops along the way. These supplies will vary. One kit might have a zip type bag containing: tweezers, pen-light, q-tips, humidity filters, extra stoma cover, while another has a plastic box with small magnifying mirror, TEP cleaning brush and syringe/pipet, and another might be sure to have an extra Servox battery and saline solution. Note what you use at home foreveryday care and have it with you.

The rest of your equipment can go in your luggage. Some of the things you might want are extra scarves, stoma covers, extra batteries, battery charger, complete TEP prosthesis kit with K-Y and gel caps, tape, small scissors, bright light, mirror on stand, peroxide, or extra stoma vent.

For those of us that need to bring a suction machine, or a Servox battery charger, purchase an “inverter” for your car to allow you to use small electric appliances in your car. Also, bring a UL rated extension cord for use in the motel room or in case you need to stop someplace and borrow an electric outlet.

 

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