April 2005


 

 

Name Of Column Author Title Article Type
Musings From The President Murray Allan Webmaster Gets Big Break  News & Events
VoicePoints Corina Van As-Brooks Lary& Sense Of Smell Education-Med
Musings From The President Murray Allan Casey-Cooper Nominations News & Events
WebWhispers Columnist Maggie H. Geehan My Dream Is Realized Experiences
LivingThe Lary Lifestyle          Joan G. Burnside Chapter Two Education-Med
Between Friends Donna McGary Canary In Coal Mine Experiences
Bits, Buts, & Bytes Dutch Computer Tips Experiences
Welcome New Members Listing Welcome News & Events

 

                Murray's Mumbles ... Musings from the President
 
                  Webmaster gets his big break in El Lago, TX

     Now that I have your attention I must say that there is bad news and good news in El Lago, TX, the home town of our Founder and Webmaster, Lt. Col. David L. Helms, USAF (Ret.), who is known to us all as Dutch.  "What", you may ask, "could have occurred in this sleepy Texas village which nestles on the shores of Clear Lake and Galveston Bay?"  Well here is the BAD news from February 28th, 2005.

     While Dutch was running a quick errand so he could immediately return to WW Central, in order that those all important emails that we all read could be checked for authenticity and rerouted, he had an unfortunate accident.


     While skipping down a rain covered staircase in his apartment complex, a terrible thing happened.  While just a third of the way down the stairs, Dutch slipped and tumbled the rest of the way, losing his right shoe in the process and banging his shoeless right foot into two of the metal stair rails.

     Fortunately, a neighbor heard the noise and was there in a heartbeat. Dutch was heard to say "My foot hurts like heck" (or words to that affect).  He was rushed to hospital where X-rays were taken and it was determined that Dutch had two broken small foot bones plus cracked the ankle and heel bone. The skin on the bottom of his right heel was split open and was bleeding profusely.


     And now for the GOOD news. Dutch was treated promptly at the hospital and fitted with a foot cast to take the pressure off the heel. He now had an excuse to be a Professional Couch Potato for the next six weeks, at least.  He has many friends and neighbors to help when necessary as walking is difficult and driving almost impossible. However, he is still a whiz at the computer!

And how was your month?

Take care and stay well.

Murray

PS: Update - Dutch's cast came off on 10 April and he is now walking and driving fine ... all is AOK!!


 VoicePoints [ ? 2005 Dr. Jeff Searl ]
  
  coordinated by  Dr. Jeff Searl, Associate Professor ( jsearl@kumc.edu )
                               Hearing and Speech Department, The University of Kansas Medical Center
                               MS3039, 3901 Rainbow Blvd., Kansas City, KS 66160

Laryngectomy And The Sense Of Smell.
How It Works And How It Can Be Restored.
By Corina van As-Brooks, Amsterdam, the Netherlands

The loss of the sense of smell (or loss of olfaction as it is also called) is one of the consequences of total laryngectomy that does not receive much attention. Nevertheless, olfaction is an important sense in daily life. For instance, if you think of smelling gas, fire, or spoiled foods to alarm you, or smelling a nice perfume, or food that is so good it makes your mouth water, it is not hard to imagine that the loss of this sense has a considerable impact on daily life.

Olfaction

The olfactory organ is located high up in the nose (see Figure 1). This organ has elements that are able to trap odor molecules when the air flows by it. The information about the odors is then sent to the brain via the nerves and the odor is recognized.

For this mechanism to work, it is essential that the air containing the odor molecules passes the olfactory organ. Normally, air passes the olfactory organ each time someone  breathes in through the nose (see Figure 1).


Figure 1

Olfaction after laryngectomy

Research has shown that following a laryngectomy, people are not able to smell as well as before the operation. In a study at the Netherlands Cancer Institute, with 63 patients participating, odor tests showed that 68% of the laryngectomees in that study were considered non-smellers.

The underlying reason for this problem is the absence of airflow into the nose (see Figure 2). Since laryngectomees are breathing in and out through the tracheostoma, the air simply does not reach the olfactory organ high up in the nose. The olfactory organ itself is unaffected by the surgery. This means that when the odor can reach the olfactory organ, you will smell it. This happens for instance when the odor is literally blown into the nose, or when the odor is extremely strong or vaporizing.


Figure 2

Rehabilitation of olfaction

There may be situations in which it is actually an advantage not to be able to smell automatically but in most situations it would be nice to be able to smell. At the Netherlands Cancer Institute a technique has been developed that can help laryngectomees to learn to smell again. The method is called the Nasal Airflow Inducing Maneuver or Polite Yawning Technique. Research of the technique has shown that quite a high percentage (89%) of the participating laryngectomees were able to learn to use the technique in one therapy session. An evaluation after 6 weeks showed that 46% of the laryngectomees that could not smell had mastered the technique and now were able to smell again. A long-term evaluation showed that not all laryngectomees were able to carry out the maneuver correctly even after a longer period of time. The results of further investigations suggest that initial intensive training and using a water manometer (see Figure 3) for biofeedback, improves the results and increases the number of laryngectomees that are able to successfully use the technique. As with many things, practice is the word!!


Figure 3

Polite yawning technique

The name of the technique already indicates the core of this method: it looks like polite yawning. By making a movement that is similar to yawning with closed lips, the oral cavity is enlarged and the vacuum that is created causes air to flow into the nose. This airflow reaches the olfactory organ and you can smell!

The pictures in Figure 4 and 5 show you how to make the movement. These are the key points:

Close your lips (and keep closed)
Hold your tongue against the roof of your mouth
In one movement, simultaneously lower your jaw, floor of mouth and tongue downwards
Repeat the movement

     
Figure 4


Figure 5

It is important not to breathe in too heavily simultaneously with performing the movement. Many laryngectomees initially do breathe in during the movement simply because they are used to taking a breath when trying to smell something. It is not necessary at all and can make you dizzy.

Refined polite yawning technique

Some laryngectomees are able to learn to make the movement somewhat smaller, which is usually appreciated because it makes the movement less visible. In general, it is advised to start with the regular polite yawning at first, to develop a good feel for the movement. As a second step one can try to use an isolated pumping movement of the back of the tongue and the floor of the mouth and eliminate the downward movement of the jaw (this looks like the movement frogs and turtles make with their floor of mouth!). The key points for this movement:

Close the lips (and keep closed)
Hold your tongue against the roof of your mouth
Stabilize the tip of your tongue against your teeth or against the ridge on your palate right behind your upper teeth
Move the back of the tongue downwards (compare with tongue clacking)
Repeat the movement

Water manometer for visual feedback

As mentioned earlier, we have found that the use of a water manometer (see Figure 3) has been very helpful to see the immediate results of the movement (the water will move towards your nose if you are carrying out the movement correctly). It will also help you to improve the movement, to make it smaller and more efficient. The manometer that you see in the picture may be hard to make, but you can simply make one yourself by taping a plastic tube onto a piece of cardboard in a U-shape.

Teamwork

The results of the research and the development of the technique were the result of teamwork and I did not want to write this article without acknowledging my colleagues who all played an active role in this project: Prof. Dr. Frans JM Hilgers, Prof. Dr. Frits van Dam, and Rianne Polak. This project has been a lot of fun and we have enjoyed working on it. We hope you will enjoy regaining your sense of smell!

A part of this project was funded by the Dutch Cancer Society and they enabled us to write a manual about this technique in Dutch. This manual has now been translated into English and we have made a CD-ROM containing the manual and many other documents and video clips. This CD-ROM may help you in learning to smell again and may help your Speech Language Pathologist in understanding the technique and training you.

The CD-ROM is titled ?Olfaction regained, using the Polite Yawning Technique? (ISBN 90-75575-07-6, Editor: Frans JM Hilgers). Atos Medical has been kind enough to distribute this CD-ROM for us and help us reach our goal in making this method available to many laryngectomees around the world. The CD-ROM is free and you can obtain a copy by sending an e-mail or give a phone call to Brenda Martin (Brenda.Martin@atosmedical.com, 414-750-8398).

 

2005 Casey-Cooper Award Nominations


     The nominating period for this year's award, which will be presented at our annual banquet during the IAL meetings in Boston in September 2005, is now open.  A full description of the award and the procedures involved can be found on our web site at:  http://www.webwhispers.org/pages/reports/caseycooper.htm

     The Casey-Cooper award shall be presented to the WW member who has been chosen by the Awards Committee.  Nominations will be from the membership who will be asked by the Committee Chairman to write an Email with their nomination and send it to the Awards Committee. This nomination must include detailed information as to why this WW member should be considered for this award.  To be considered by the Awards Committee, a member might have performed such services as work for WebWhispers or for other larynx cancer patients, assistance to other support groups, providing help to individuals through visitations, educating children through speaking engagements at schools, volunteerism to the ACS, the IAL, or to other national or international organizations or other services to the community.

     Therefore, if you know of a WebWhispers member who might be deserving of such recognition, please send nominating Email to this year's Chairman, Dutch Helms, at: FantumTwo@aol.com, who will then share it with the other members of  the committee - Pat Sanders, Mary Jane Renner, and Herb Simon.  The nominating period will remain open until the 1st of June 2005 ... but don't procrastinate ... if you have someone in mind, let the committee know now ... you can always add to your "nominating information" later, if necessary.

     Thanks sincerely for your interest and participation.


   WebWhispers Columnist
                                                                                  
Contribution from a Member
 

My Dream is Realized!!
Talking Hands Free with the B-M Button
by Maggie H. Geehan


     My name is Maggie, sixty-one years young, a laryngectomee, and I live in Florida. One of my goals as a lary was to be able to talk hands free using the Barton Mayo Button. I had two main challenges preventing me from reaching my goal: my stoma did not have a ridge all the way around to hold the button in and my stoma was too big.  This is my story of how M.D. Anderson Cancer Center (MDACC) in Houston, Texas made my dream come true as they performed reconstructive plastic surgery on my stoma and then made a customized B-M Button to fit my ?new? stoma. What I am sharing worked for me but that is not a guarantee that it will work for everyone. Each of us has different challenges and each requires different solutions

     I had my laryngectomy April 18, 2001. I was blessed with the gift of being able to have a TEP.  For the next year, I used my thumb to occlude my stoma to talk. After many months of trying different glues and discs so I could talk hands free, my SLP and I finally found a system that worked, but only for several hours. So I would spend one and a half hours every morning cleaning, prepping, and gluing a disc with other self adaptations to keep the disc from leaking. Within several hours, the disc always leaked and I would have to use my finger to cover the leak. Some days, I would go through three discs. While this was better then always occluding with my thumb to talk, it still wasn?t where I wanted to be. 

     In July of 2002, my SLP tried the B-M Button but it would not stay in place. She informed me that she was sorry but there was nothing else she could do to help me. Then, a few months later, I went to the Florida Laryngectomee Association Convention in Daytona Beach and Nancy Blair, SLP, tried some of the larger Buttons and they wouldn?t stay in either. She told me that maybe MDACC could help me. So, Nancy and I both contacted them and I went to MDACC in March, 2003, where I saw Julie Bishop-Leone, SLP, and Dr. Jan Lewin (in charge of Speech Dept). Julie and Dr. Lewin agreed that my stoma did not have a ridge all the way around. Next was Dr. Reece, Plastic Surgeon, who had two questions to ask me before he would even consider doing surgery. One - Did I still smoke cigarettes? No, I had stopped smoking. Then he wanted to know if I had any radiation. No. He said ok, that if I had been treated with radiation that he would have to make sure that my skin would be able to respond in a positive manner to reconstructive surgery. So, now I had to see Dr. Lemon, an Oncologic Prosthodontics in the Head and Neck Dept.  Dr. Lemon said that he would be willing to try to make a customized B-M Button for me if the stoma surgery was successful. Any adventure or journey takes time and patience :-)

     I saw Dr. Reece again and he wanted to be sure that I was physically ok to undergo surgery. Not an easy question to answer when you have a medical history like I have, which includes a history of tuberculosis, brain aneurysm surgery and an inoperable brain aneurysm, silent heart attack, history of strokes, seizures, and more. So, Dr. Reece ordered many tests, including heart stamina. What this meant was that I had to go back to Texas one more time before we could schedule the surgery. One of the tests was to have a psychiatric evaluation because I had attempted suicide when I was in my twenties (severe PMS). Dr. Rickman, who did the psychiatric evaluation, decided that there was a very slight chance that I might be ?normal? :-)? So, I passed all my tests.  It was now July, 2003 and Dr. Reece scheduled my surgery.

     The surgery would involve making a two inch incision just above my right knee and removing a twelve inch tendon. He made an incision at three, six, nine and twelve o?clock of my stoma. He then inserted the tendon around the inside of my stoma,  pulled it like a draw string and sewed it to my breast bone right there below the stoma. I did not have any pain in or around my stoma after my surgery.   I spent the night in the hospital and then went back to the hotel, remaining in Houston for the next three weeks.

     My recovery went very well. Dr. Reece removed the rest of the stitches ten days after the surgery. During this time, I used an electrolarynx to talk. Several weeks later when everything was healed, I went back to using the glue and disc so I could talk hands free again. When I first started to walk after the surgery, my right leg felt a little bit weird. Not painful. Just wobbly. Three days after the surgery, I was back to walking my three and a half miles in one hour each day for exercise. Three weeks after the surgery, Julie tried a regular B-M Button. It would stay in for almost two hours and then pop out. So, Julie, Dr. Lewin and Dr. Lemon measured my stoma to make a customized button. Then I went back home to Florida. 

     Four months later, December 2003, I received my customized B-M Button and I wore it for two hours the first day, then up to three hours the next day. It wasn?t working and was popping out. I cried. It had now been a year since I first contacted MDACC and maybe this wasn?t going to work after all. I called Julie and told her what was happening, that the top part of the button was pulling out. It seemed to be too long at the top. Julie is a beautiful and loving person, who was going out on a maternity leave, so  we set up an appointment for me to see Jodi in February, 2004. I was so frustrated and  was determined that I was not going back to using glue. So, I asked Spirit to help me figure out a way to keep the button in. With Spirit?s guidance, I was able to make, what I call ?Maggie?s B-M Button Attachment (see photo at right). It was not perfect but it worked for me and I did not return to using glue and discs. 

     So, I went back to MDACC in February and saw Jodi and Dr. Lewin, then, Dr. Reece, who said he knew what happened. The bottom part of my stoma recessed and he thought he might be able to fix it. Would I be willing to undergo surgery again. Spirit was with me and I knew in my heart that it was ok to go forward with the surgery. So, Dr. Reece then reopened my stoma at the bottom and split the tendon in half from both sides and brought the halves together to form a completed circle at the bottom of my stoma. He still kept the other half of the tendon on the breast bone.

     I stayed in the hospital overnight and returned to the hotel for ten days since MDACC usually wants patients from out of state to remain in the area for a while after surgery.  I had a little trouble with one of the stitches but the antibiotics took care of it so it did not get infected. Also, I did not have any pain with this surgery. I had to use the electric larynx during the recovery which was two to three weeks.

     In April, 2004, I went back to MDACC and saw Julie, Drs. Lewin and Lemon who measured me for a new customized B-M Button. I also saw Dr. Reece. We were all so pleased with how my stoma looked: smaller, nice and round, and with a beautiful ridge all the way around. Two months later, I received that new customized button Drs. Lewin and Lemon made to fit my new stoma. A picture of it is on the left. Here are the notes I wrote about wearing it, which I gave to MDACC:

?Had been using first customized b-m button with Maggie?s b-m button attachment since February, 2004. Received new customized button on June 19, 2004. - wore new button for four hours. Leaked a little at bottom. Did not pop out.  Cleaned stoma and put old button back in so I can use filter during the night. While wearing, button is ?pinching? a nerve at top of reconstructive surgery scar sending stinging, painful zings up the left side of my neck. Also button ?pinching? a nerve at the bottom part of reconstructive surgery sending painful, stinging zings down left side of chest bone and over the ribs and into the left shoulder. The stinging pains calm down after about an hour. The one in the neck kicks up off an on. I also have a zinger from my original laryngectomy surgery which is on the top of the scar on the right side of my neck. So, I am used to zingers. 

June 20th - wore new button for eight hours with foam piece at inside of bottom of button. Did not leak and did not pop out. Still experiencing the zingers. Got three cuts inside stoma from new button. Put old button back in for night.

June 21st - wore button for twelve hours with foam piece at inside of bottom of button.  Did not leak or pop out. Cuts in stoma little deeper; neck red on outside approximately one inch around stoma.

June 22nd - wore new button for fourteen hours(all day). Still having zingers. Good changes in stoma: Starting to heal and  button is not leaking anymore. I now have a great seal. The red area has not expanded. Old button for the night.

June 23rd - wore new button for fourteen hours. No leaks and no popping out!!! Still having zingers but I am used them by now.  Changed my stoma care: I decided to leave the old button out for the night to see if my cuts would heal quicker. Not a good move. The next morning, my stoma had shrunk to fifty percent of it?s usual size and was almost closed with mucus and some blood. I cleaned my stoma as usual. The cuts are still deep but no infection. They are healing  and I now see lumps and indents with a white coating that I call ?Button Calluses?. Not as much bleeding. I had a couple of ?Button Calluses? after using my first customized button so I knew it was ok.

June 24th - wore new button all day; no leaks or pop outs; still having zingers. Red area on neck not expanding. Cuts inside healing slowly. Button calluses looking ok.  At night, left out old button for night and again this was not a good idea as my stoma shrunk and was clogged with mucus and a little blood.

June 25th - June 30th - Wore button all day. Redness in neck slowly went away. Cuts in stoma slowly healed. Button calluses doing well. No leaks and no popping out. At night, I cleaned as usual and put in old button which was hitting the inside of my stoma in a different place than the new one which meant that I was not pressing the cuts inside my stoma during the night.

July 1, to present, July 20, 2004: No redness in neck. No cuts in stoma. Button calluses working well. Now that everything is healed I can see new ridge from second surgery which is making the great seal at the bottom as well as the new customized button with the oval shape is completing the ability to have a great seal.  Thanks to each of you for helping me get my miracle. I can now talk hands free, glue free, disk free and Maggie?s b-m button attachment free. What a blessing!!  Thanks.  Dr. Reece: There is a stitch in the surgery you just did at the bottom of the stoma that has come up twice. It is not infected. It is similar to the stitch that was in my leg that kept coming up and opening and healing and then opening again. It just opened up last week and looks normal again. When I see you in September, you can check it for me and let me know if we can let it do it?s own thing or if you need to do anything.?  

    
I went back to MDACC in September, 2004 for a follow up visit. We are all so pleased with my miracle. I have included a copy of a thank you card that I made for MDACC folks.
 
     It is now February, 2005 and I only have one zinger sometimes at the bottom scar of the stoma when I press on it. There are no cuts and no problems at all wearing the button. I still wear my old customized button to bed to hold a filter during the night and since it is smaller in size, it lets my stoma shrink a little during the night so the new button continues to fit tightly everyday. 

     Financial aspects of my journey: I am on Social Security Disability due to neurological damages I received in a car accident in 1984 so I do not get much monthly income. I am also on Medicare and Medicaid. I went to MDACC in Texas from Florida six times in a year and half. I stayed in a hotel room for a total of two and half months. Medicare paid for eighty percent of all medical bills. Florida Medicaid would not pay for the remaining bills because the services received were out of state. I made arrangements with MDACC to pay for the remaining medical bills. It will take me another five years to pay off my bill in full. A small price to pay for the miracle I have of being able to talk hands free using the B-M Button.

     Social Services: When you make your appointment to see Julie at MDACC, she can give you the phone number and individual to contact at Social Services.  They can help you with information on assistance with air flights, hotels and other necessities. They were very helpful to me. Air Flights: I flew to MDACC via Angel Life. Their phone number is 1-877-247-5433.  This number covers the southeast USA but they can direct you to the proper number.  This agency provides air transportation free of charge if you meet their criteria. The pilots offer their planes and their time free to those who qualify. I qualified because of my low income.  I was a cancer patient undergoing rehab and both my doctor and social worker from Welfare filled out forms stating my needs. I used Angel Life just once because the next time I was going to MDACC, the weather was not good for small planes. So, instead of canceling my appointments, my friend and angel, Laura paid for me to take Continental Airlines. Continental Airlines has a good agreement with MDACC with lower fares and you can change your dates if needed because your appointments got changed. You can do this without paying a service fee for the change.  Hotels: If money is not an issue for you, the Jesse H. Jones Rotary House is an excellent place to stay. It is directly across from MDACC.   MDACC Social Services were able to help me stay at the Surrey House for a while because of my low income. Then, the Surrey House helped my friend and angel, Laura pay for the remainder of hotel stays at a very reasonable rate. The Surrey House is not a plush place but it is clean. It also has a table, refrigerator, and microwave,. There is a Super-Target right across the street where I could use my Food Stamps to get my food at very low cost. That way, I did not have to eat out.  Also the folks there were very helpful to me when I first got out of the hospital. They knew I was alone in my room so, if they got a call from my room but didn?t hear anything, they would call 911 and send someone down to my room to help me. Not all hotels would do that.

     So, I was able to receive my miracle through the help of Medicare, MDACC Social Services, Surrey House, Angel Life, my friend and angel Laura, who helped me so much, and my monthly payments.  I did everything to keep the costs as low as possible.

     Julie has given me permission to give out her information. If you are having difficulty using a B-M Button to talk hands free, you can contact Julie. And, please remember that there are NO GUARANTEES that the procedures and customized B-M Button will work for you. MDACC will do their best but each of us has different challenges which require different solutions. Thanks for listening and contact me if you have any questions or comments. I have now been able to wear a B-M Button and talk hands free everyday for an average of fifteen hours a day for the past eight months.

Do everything you can to reach your dream!

Yep, it?s me :-)  Maggie from Florida, Email: wagam1@bellsouth.net 

MD ANDERSON CANCER CENTER 
JULIE K. BISHOP-LEONE, M.A., CCC-SLP
Clinical Manager of Speech Pathology & Audiology
Department of Head & Neck Surgery 
1515 HOLCOMBE BOULEVARD - 340,  HOUSTON, TX 77030-4009
Tel: (713) 792-6525; Fax: (713) 794-459; Email: jbishop@mail.mdanderson.org 


Maggie's Thank You Card



 
 Living the Lary Lifestyle          Joan G. Burnside, M.A.
  Copyright 2005

 

Welcome to my second list of tips for new larys.  Please check the March, 2005, Whispers on the Web for the Introduction to this series and Chapter One.
 

CHAPTER TWO
Ten more tips

When you get into a tight place and everything goes against you
til it seems as though you could not hold on a minute longer,
never give up then, for that is just the place and time
that the tide will turn.
Harriet Beecher Stowe

TIP # 11: KEEP YOUR YEAST FROM RISING
(for TEP users who are bothered by yeast problems)

Yeast starts in your mouth and travels down the pharynx where it will sneak into your prosthesis, sticking so well that it may disable your prosthesis.  Many Larys swish and swallow Nystatin, a prescription medicine two to four times a day.  Some dip their prosthesis brushes into Nystatin and slide it into the prosthesis from the front.  Peroxide is cheap and may help if used the same way but it foams annoyingly. A brush used daily, even with plain water, will keep the inside of the prosthesis clean. Other medications are the Diflucan in pill form and Mycelex as a troche.

Another Lary says he got the following idea from a speech-language pathologist (SLP) whose clients couldn't afford medications.  Ready?  Swish and swallow A-1 Steak Sauce!  (I think I would rather drown the steak in it, chew  a long time and then swallow.)

JB's note:  I recently tried another approach, advised by an SLP, directly injecting Nystatin into the prosthesis with a syringe.  Unfortunately I think I lost some of it in my airway and coughed much of the night.

TIP # 12:  SHAMPOO WITHOUT FEAR

More than one Lary has been terrified of showering and shampooing, but there are ways to do it. For example, you can use a commercial shower guard which is a plastic deflector that you wear around your neck.  Some people just wear their regular HME in the baseplate and say it will deflect the water unless you allow the shower to spray directly onto it. Another simple idea is to bite down on one side of a washcloth and let it hang down while you bend forward under the shower spray.  The cloth captures the runoff, keeping it away from your stoma on its way to the drain. Memorably, other Larys have pointed out that you probably won't drown in the shower if you get a little water down your stoma, but you will have a mighty cough!

TIP # 13  HUMIDIFY  YOUR CAR

 Gagging and coughing can be dangerous whether you're behind the wheel or a passenger.  You can easily find a car humidifier on the Internet, but there are creative methods, too. For example, direct the heat or air conditioner vents downward so the airflow will blow over a pan of water on the floor.  You can use that same pan of water to periodically wet a washcloth which you then hold loosely over your stoma cover.  Wet towels draped over the empty seats will work too.

JB's note:  At first I had to ride with the A/C  or heater turned off. As I got better, and humidified better, too, I could go farther without a coughing fit.  When  I got to the point where I could ride a couple of miles without coughing, I started to drive again, but only on roads where I could pull over easily.  It got better and better from there.

TIP # 14: LOCATE YOUR LOST ELECTROLARYNX:

Put a phone number on your EL, preferably one which will be answered by a relative or friend who can follow through or one connected to an answering machine.  If you tape the number on, pay close attention to the placement, so it doesn't interfere with the charger or battery.  If you have a household engraver, you've probably already used it.  Or visit your jeweler and have it engraved.  Happy hunting!

TIP # 15:  DRY UP YOUR FOAMING MOUTH

Try swishing and swallowing bottled club soda or rinse with water and baking soda or lemon.  Brushing your teeth often with baking soda may help.  Keep trying different substances to find what might help, even if only for a short time.  There appear to be no really handy hints for foaming or excess saliva caused by radiation, and the medical people do not seem very concerned about it.

JB's note:  My local internist had worked in a cancer clinic at one time, and she told me the foaming would eventually just stop.  In the meantime I was advised to continue carrying my cup and tissue.  It did stop, although once in awhile I am revisited. Drinking a cup of black coffee seems to help now.  Interestingly, the reading I had done prepared me for dry mouth after radiation, but I have never seen a question about dry mouth on WebWhispers. I have seen a number of questions  about excessive foaming. 

TIP # 16: AVOID DUST LIKE THE PLAGUE

If you find yourself in a construction zone on the freeway, or you simply must vacuum the living room, then super-humidify your stoma with a saline bullet, spray water on your stoma cover, or cover your HME with a wet washcloth.  Think twice about common chores like shaking throw rugs or sanding a cabinet.  Preferably, let someone else do it, don't do it all, or develop another method that doesn't put dust in  the air.

JB's note:  While baking cookies for my mother and her friends at assisted living, I unfortunately used a recipe that called for sifting the flour.  I threw the sifter out after that experience, in case I should ever forget.

TIP # 17:  SMELL YOUR FOOD AGAIN

Lean over the steam rising from the food, waft it toward your open mouth and pant.  At first it will seem very faint, but still a real smell again.  It's good for your appetite, and the steam could help moisturize your stoma, too.

JB's note:  The first time I really started cooking from scratch, the smell was a revelation.  I had thought I'd never smell again, so I really appreciated how this most basic sense enhances one's life.

TIP # 18:  GET A MIRROR THAT REALLY MAGNIFIES:

At first you'll probably get along with a drugstore makeup mirror, but once you have a prosthesis, you'll need a 7X or higher magnifying mirror with a light.  Suddenly, you'll know what you're doing because you can see what you're doing.

JB's note:  This came to me on my first post-laryngectomy trip, when the hotel in Biloxi provided a fabulous, high-powered, swing-out mirror.  As soon as I got home I went to my local bed and bath store where I was stunned by the variety of mirrors I could pay a lot of money for.

TIP # 19: EXPECT EVERYTHING TO TAKE LONGER

Your doctors and SLPs can give you only estimates.  Recovery from a laryngectomy and the related cancer treatments is very complex and individual.  People writing to Web Whispers often say "Measure your recovery in months and years."  If something does happen faster, you can really celebrate!  If you keep a book or journal, you'll be able to track tiny bits of progress by the days and weeks.  Reading these progress notes is very encouraging and helps you get to the next step.

JB's note:  A "laringectomizado" writing from his website in Spain, describes his progress as "poco a poco," which I think is much more descriptive and fun than "little by little."

TIP # 20:  EAT FIRST, TALK LATER

Dinner table conversation is one of the most satisfying  human social activities, but impossible for many of us.  Many Larys simply don't talk at meals until they are totally finished.  Gradually you may be able to know if your pharynx is clear enough that your prosthesis won't clog with food, and you can intersperse eating with talking.  If you have learned to speak with an electrolarynx, you can talk during dinner.

JB's note:  Now that I can speak at least part of the time during dinner, I carry a pad and pencil so I can carry on if I get stuck.  My brother-in-law even sets out a clipboard and pencil for me.  He really likes to discuss current events!

LET'S TALK

Now is a good time to rest and reflect on this second group of tips.  I hope you're marking up the pages with your notes.  Any questions for the doctor or SLP?   Have you signed up for WebWhispers? Are you trying to get over something?  Anything you're going to try? Write or draw it in your notepad.



 
 BETWEEN FRIENDS          Donna McGary
                                     "That which does not kill us makes us stronger"
 


The Canary in the Coal Mine

My Journal - May 15, 2000

     "The Big C" as they used to call it still conjures up powerful images and responses in our culture.  Tell the people you love who love you that you have cancer and watch as all their fears, guilt, anger, and defensiveness erupt.  Not at you directly, although the results can be disconcerting.  What do you say to a distraught loved one who responds to your loving embrace, accompanied by the requisite "I'm OK", which you are trying really hard to hold on to at that moment, by sobbing, "I know, but I'm not".  It's very odd, but sometimes it is easier to be sick than to be healthy watching someone be sick.  Which brings us to another point, it's also very weird to be seriously sick and not look it.  Other people are very uncomfortable with that, because if you look well and aren't, then maybe they aren't either.   I am not being cynical or critical.  It is very difficult to accept that one could look healthy and be sick.  It makes us all fearful and painfully aware of the absolute randomness of the most serious afflictions?there but the grace of god go I, resonates even for confirmed agnostics and, I suspect, even for atheists who must sometimes confront their mortality with just a little question mark.   When you tell people that you have cancer, they go home that night and pay a little more attention to their families.  They hold their loved ones a little tighter; they call estranged lovers with more forgiveness than they previously thought possible and they vow to be more humane and appreciative.  You become the sacrificial scapegoat within your small world that reminds all the people you love who love you that life is short and infinitely sweet and unpredictable and that they must treasure every uneven moment of it.  You find yourself bathed in their loving support even as you try to protect them.  Your world is so separate from theirs as you trudge alone from one wing to another of all the world's great medical institutions clutching your x-rayed, CT-scanned, MRIed, scoped, poked, prodded, scraped and otherwise subjected to invasions, humbled body?it is a very lonely trudge.   And in truth, it is much more of a trudge than anything so noble as a journey.  There is nothing romantic about this, my latest adventure.  I don't want to be point person for my peers' complacency about life.  I want my own complacency back.  I don't want to be your heroic reminder of the fragility of life.


Present

     I labor under the imperative to write, re-write and re-re-write again.  However, for this column, I have resisted the impulse?at least when it comes to my original journal entries.  The reason is simple- when "it" first happens to us, we are in a state of shock. Sometimes we are aware of this- sometimes not.  I thought I was fine.  But late at night, alone, when the "muse" came calling, amazing things happened.  I wrote things I didn't know I was feeling.  Those things are my journal entries.  I read them now and I am surprised by my rawness. It is like I was skinned alive and didn't know it.  And I have heard from a number of you that it resonates.  So I am not re-writing those first entries. But I will offer this caveat- that was then -this is now.  It does get better.  But it can be an imperceptibly slow process and one that is defined by some odd markers.  Not just the expected signs that your life goes on, like anniversary dates of your surgery/treatments or routine CT scans that come up clean, but other more subtle signs.  Like when you first meet someone and during introductions you wonder if you have spinach in your teeth, until you realize its not your teeth, but your "distinctive voice" that has them caught them off-guard.  Or when, after a program during which you & several others spoke, attendees tell you they could hear and understand you best, because you enunciate and speak slowly and deliberately.  Or when you stop being afraid of the telephone (I still have trouble with that one!).  Or, maybe when you start wondering, "What's the big deal?" when people say how amazing you are and what a remarkable recovery and adjustment you have made.  But then you think back to when you felt just like these journal entries?and you know what they say is true, "You've come a long way, baby".     
 

"Sometimes the light's all shinin' on me,
other times I can barely see,
lately it occurs to me,
what a long, strange trip it's been."
~Jerry Garcia~
 


                          Dutch's Bits, Buts, & Bytes

HEY BABY, WHAT'S YOUR NAME?


The Baby Name Wizard is an interactive visualization of baby name choices.  Type in a name, letter by letter, and you'll see popularity trends rise and fall over the past century.  Turns out that "David" peaked in the 1960's, and some of the hottest names now are Emily, Hannah, Jacob and Michael.  Check it out here: http://babynamewizard.com

NEWS FLASH: YELLOW PAGES NO LONGER YELLOW

Amazon's new A9 search engine has an amazing new feature that brings the yellow pages into living color, and lets your fingers actually do some walking... right down the street and into the front door of that pizza place you were looking for.

Search the Yellow Pages at A9.com and you'll find the usual search results, such as address & telephone, PLUS images of the storefronts of all the buildings on the block.  This Block View technology makes it easy to observe the parking situation, the neighborhood, and check out other nearby businesses.

When launched a few weeks ago, the A9 Yellow Pages included 20 million photos of the downtown areas of 10 major U.S. cities including Atlanta, Boston, Chicago, Dallas/Ft. Worth, Denver, Los Angeles, New York City, Portland (OR), San Francisco, Seattle, and others.   Business owners can add their own photos, store hours, menus and more for free.  More than 14 million businesses are currently listed.  Try it out here:  http://a9.com/pizza?a=oyp

I chose New York, NY then popped into Lombardi's Pizza and found that there's a lovely park just a few doors down the street.

 

 

   ListServ "Flame Warriors"   


                                                                               
Terms of Importance
flame

1. n.   A hostile, often unprovoked, message directed at a participant of an internet discussion forum.  The content of the message typically disparages the intelligence, sanity, behavior,  knowledge, character, or ancestry of the recipient.
2. v.   The act of sending a hostile message on the internet.

flame warrior
1. n.   One who actively flames, or willingly participates in a flame war ... (Another Example Below) ...

Target

Target is the guy everyone in a forum loves to hate. He brings this
upon himself; he may be a known cheater in a game forum, a
conservative among liberals, a Windows guy among Mac enthusiasts,
or even a man in a women's forum. Why Target places himself in
such dicey situations is anyone's guess, but he seems genuinely
oblivious to the danger. When Warriors unleash their collective
fury upon him his usual reaction is "Hey, what did I do?" or "Why
do you all hate me?" Target eventually gets the hint after a while
and moves on. NOTE: Target often serves as a useful pressure valve
for the forum's pent up hostilities. Therefore, if the current Target
has been driven off or immobilized a new target will be quickly
selected.

Above courtesy of Mike Reed
See more of his work at: http://redwing.hutman.net/%7Emreed/  
 
 

   Welcome To Our New Members:

I would like to welcome all new laryngectomees, caregivers and professionals to WebWhispers! There is much information to be gained from the site and from suggestions submitted by our members on the Email lists.  If you have any questions or constructive criticism please contact Pat or Dutch at Editor@WebWhispers.org.

Take care and stay well!
Murray Allan, WW President

     We welcome the 25 new members who joined us during March 2005:

Ron Beasley
Rogers, AR
David Best
East Hartford, CT
Donna Bronkema
McBain, MI
Sven Brustner
Durban, South Africa
Bobbijo Cook - Caregiver
Stafford, VA
Joe Hunter - Larynx Cancer Patient
Dumfries, VA
Jerry Jacobs
Pierre, SD
Marcia Kamprath - Caregiver
Plano, TX
James Krauth
Point, TX
Barton Lehr
St. Peters, MO
Gregg Mitchell
Blaine, WA
Ciro Mangione
Nutley, NJ
Christine Mitchell - Caregiver
Scranton, PA
Nereida Negron - Caregiver
Bayamon, Puerto Rico
Cindy Niglio - Caregiver
Pinellas Park, FL
Paul Osborne
North Fort Myers, FL
Cathie Pallay - Caregiver
Bushkill, PA
Douglas Peterson
Lake Elmo, MN
Steve & Carol Shaw
Hobe Sound, FL
Ann Snyder
Chesapeake, VA
David Strong
Marietta, SC
Jennifer Turrubiate - Caregiver
Rosenberg, TX
Mary Vargo - SLP
Mars, PA
Thomas Watt
Hercules, CA
 
Roger Westcott
North Chelmsford, MA
 



 
WebWhispers is an Internet-based laryngectomee support group.
  It is a member of the International Association of Laryngectomees.        
  The current officers are:
  Murray Allan..............................President
  Pat Sanders............V.P.-Web Information
  Terry Duga.........V.P.-Finance and Admin.
  Libby Fitzgerald.....V.P.-Member Services
  Dutch Helms...........................Webmaster
      

  WebWhispers welcomes all those diagnosed with cancer of the
  larynx or who have lost their voices for other reasons, their
  caregivers, friends and medical personnel.  For complete information
  on membership or for questions about this publication, contact
  Dutch Helms at: webmaster@webwhispers.org   

 

Disclaimer:
The information offered via the WebWhispers Nu-Voice Club and in
http://www.webwhispers.org is not intended as a substitute for professional
medical help or advice but is to be used only as an aid in
  understanding current medical knowledge.  A physician should always be   
consulted for any health problem or medical condition.



As a charitable organization, as described in IRS § 501(c)(3), the WebWhispers Nu-Voice Club
is eligible to receive tax-deductible contributions in accordance with IRS § 170.



  ? 2005 WebWhispers
Reprinting/Copying Instructions
can be found on our
WotW/Journal Page.