Murray's Mumbles Musings from the President Webmaster …Name Of Column Author Title Article Type Musings From The President Murray Allan Webmaster Gets Big Break News & Events

3/31/08 9:35 AMWhispers on the Web - April 2005

Page 1 of 20http://www.webwhispers.org/news/apr2005.htm

April 2005

Name Of Column Author Title Article TypeMusings From The President Murray Allan Webmaster Gets Big Break News & EventsVoicePoints Corina Van As-Brooks Lary& Sense Of Smell Education-MedMusings From The President Murray Allan Casey-Cooper Nominations News & EventsWebWhispers Columnist Maggie H. Geehan My Dream Is Realized ExperiencesLivingThe Lary Lifestyle Joan G. Burnside Chapter Two Education-MedBetween Friends Donna McGary Canary In Coal Mine ExperiencesBits, Buts, & Bytes Dutch Computer Tips ExperiencesWelcome New Members Listing Welcome News & Events

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

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

While Dutch was running a quick errand so he couldimmediately return to WW Central, in order that those all importantemails that we all read could be checked for authenticity andrerouted, he had an unfortunate accident.

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



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

And now for the GOOD news. Dutch was treated promptly at thehospital 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 thenext six weeks, at least. He has many friends and neighbors tohelp when necessary as walking is difficult and driving almostimpossible. 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 nowwalking and driving fine ... all is AOK!!

VoicePoints [ ? 2005 Dr. Jeff Searl ]

coordinated by Dr. Jeff Searl, Associate Professor ( [email protected] ) 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 theconsequences 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, orspoiled foods to alarm you, or smelling a nice perfume, or food that is so good it makesyour mouth water, it is not hard to imagine that the loss of this sense has a considerableimpact on daily life.

Olfaction

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



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 passesthe olfactory organ. Normally, air passes the olfactory organ each time someone breathesin 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 asbefore the operation. In a study at the Netherlands Cancer Institute, with 63 patientsparticipating, odor tests showed that 68% of the laryngectomees in that study wereconsidered non-smellers.

The underlying reason for this problem is the absence of airflow into the nose (see Figure2). Since laryngectomees are breathing in and out through the tracheostoma, the air simplydoes not reach the olfactory organ high up in the nose. The olfactory organ itself isunaffected by the surgery. This means that when the odor can reach the olfactory organ, youwill smell it. This happens for instance when the odor is literally blown into the nose, orwhen 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 smellautomatically but in most situations it would be nice to be able to smell. At the NetherlandsCancer Institute a technique has been developed that can help laryngectomees to learn tosmell again. The method is called the Nasal Airflow Inducing Maneuver or Polite YawningTechnique. Research of the technique has shown that quite a high percentage (89%) of theparticipating laryngectomees were able to learn to use the technique in one therapysession. An evaluation after 6 weeks showed that 46% of the laryngectomees that could notsmell had mastered the technique and now were able to smell again. A long-term evaluationshowed that not all laryngectomees were able to carry out the maneuver correctly even aftera longer period of time. The results of further investigations suggest that initial intensivetraining and using a water manometer (see Figure 3) for biofeedback, improves the resultsand increases the number of laryngectomees that are able to successfully use thetechnique. 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 politeyawning. By making a movement that is similar to yawning with closed lips, the oral cavityis enlarged and the vacuum that is created causes air to flow into the nose. This airflowreaches the olfactory organ and you can smell!

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

Close your lips (and keep closed)Hold your tongue against the roof of your mouthIn one movement, simultaneously lower your jaw, floor of mouth and tongue downwardsRepeat 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 areused to taking a breath when trying to smell something. It is not necessary at all and canmake you dizzy.

Refined polite yawning technique

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

Close the lips (and keep closed)Hold your tongue against the roof of your mouthStabilize the tip of your tongue against your teeth or against the ridge on your palate rightbehind your upper teethMove 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) hasbeen very helpful to see the immediate results of the movement (the water will movetowards your nose if you are carrying out the movement correctly). It will also help you toimprove the movement, to make it smaller and more efficient. The manometer that you seein the picture may be hard to make, but you can simply make one yourself by taping aplastic 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 ofteamwork and I did not want to write this article without acknowledging my colleagues who



teamwork and I did not want to write this article without acknowledging my colleagues whoall 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. Wehope 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 writea manual about this technique in Dutch. This manual has now been translated into Englishand we have made a CD-ROM containing the manual and many other documents and videoclips. This CD-ROM may help you in learning to smell again and may help your SpeechLanguage 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 thisCD-ROM for us and help us reach our goal in making this method available to manylaryngectomees around the world. The CD-ROM is free and you can obtain a copy bysending an e-mail or give a phone call to Brenda Martin ([email protected],414-750-8398).

2005 Casey-Cooper Award Nominations

The nominating period for this year's award, which will be presentedat our annual banquet during the IAL meetings in Boston in September2005, is now open. A full description of the award and the proceduresinvolved can be found on our web site at: http://www.webwhispers.org/pages/reports/caseycooper.htm

The Casey-Cooper award shall bepresented to the WW member whohas been chosen by the AwardsCommittee. Nominations will be fromthe membership who will be asked bythe Committee Chairman to write anEmail with their nomination and sendit to the Awards Committee. Thisnomination must include detailed information as to why this WWmember should be considered for this award. To be considered by theAwards Committee, a member might have performed such services aswork for WebWhispers or for other larynx cancer patients, assistanceto other support groups, providing help to individuals throughvisitations, educating children through speaking engagements atschools, volunteerism to the ACS, the IAL, or to other national orinternational organizations or other services to the community.

Therefore, if you know of a WebWhispers member who might bedeserving of such recognition, please send nominating Email to thisyear's Chairman, Dutch Helms, at: [email protected], who will thenshare it with the other members of the committee - Pat Sanders, Mary

mailto:[email protected]

http://www.webwhispers.org/pages/reports/caseycooper.htm




Jane Renner, and Herb Simon. The nominating period will remainopen until the 1st of June 2005 ... but don't procrastinate ... if you havesomeone in mind, let the committee know now ... you can always addto 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 ofmy goals as a lary was to be able to talk hands free using the Barton Mayo Button. I had twomain challenges preventing me from reaching my goal: my stoma did not have a ridge allthe way around to hold the button in and my stoma was too big. This is my story of howM.D. Anderson Cancer Center (MDACC) in Houston, Texas made my dream come true asthey 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 aguarantee that it will work for everyone. Each of us has different challenges and eachrequires different solutions

I had my laryngectomy April 18, 2001. I was blessed with the gift of being able to have aTEP. For the next year, I used my thumb to occlude my stoma to talk. After many months oftrying different glues and discs so I could talk hands free, my SLP and I finally found asystem that worked, but only for several hours. So I would spend one and a half hours everymorning cleaning, prepping, and gluing a disc with other self adaptations to keep the discfrom leaking. Within several hours, the disc always leaked and I would have to use myfinger to cover the leak. Some days, I would go through three discs. While this was betterthen 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 informedme that she was sorry but there was nothing else she could do to help me. Then, a fewmonths later, I went to the Florida Laryngectomee Association Convention in DaytonaBeach and Nancy Blair, SLP, tried some of the larger Buttons and they wouldn?t stay ineither. She told me that maybe MDACC could help me. So, Nancy and I both contacted themand I went to MDACC in March, 2003, where I saw Julie Bishop-Leone, SLP, and Dr. JanLewin (in charge of Speech Dept). Julie and Dr. Lewin agreed that my stoma did not have aridge all the way around. Next was Dr. Reece, Plastic Surgeon, who had two questions toask me before he would even consider doing surgery. One - Did I still smoke cigarettes? No,



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 ifI had been treated with radiation that he would have to make sure that my skin would beable 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 hewould be willing to try to make a customized B-M Button for me if the stoma surgery wassuccessful. 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 undergosurgery. Not an easy question to answer when you have a medical history like I have, whichincludes a history of tuberculosis, brain aneurysm surgery and an inoperable brainaneurysm, silent heart attack, history of strokes, seizures, and more. So, Dr. Reece orderedmany tests, including heart stamina. What this meant was that I had to go back to Texasone more time before we could schedule the surgery. One of the tests was to have apsychiatric evaluation because I had attempted suicide when I was in my twenties (severePMS). Dr. Rickman, who did the psychiatric evaluation, decided that there was a very slightchance 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 andremoving a twelve inch tendon. He made an incision at three, six, nine and twelve o?clock ofmy stoma. He then inserted the tendon around the inside of my stoma, pulled it like a drawstring and sewed it to my breast bone right there below the stoma. I did not have any pain inor around my stoma after my surgery. I spent the night in the hospital and then went backto 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 thesurgery. During this time, I used an electrolarynx to talk. Several weeks later wheneverything was healed, I went back to using the glue and disc so I could talk hands freeagain. When I first started to walk after the surgery, my right leg felt a little bit weird. Notpainful. Just wobbly. Three days after the surgery, I was back to walking my three and a halfmiles in one hour each day for exercise. Three weeks after the surgery, Julie tried a regularB-M Button. It would stay in for almost two hours and then pop out. So, Julie, Dr. Lewin andDr. Lemon measured my stoma to make a customized button. Then I went back home toFlorida.

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 threehours 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 maybethis wasn?t going to work after all. I called Julie and told her whatwas happening, that the top part of the button was pulling out. Itseemed to be too long at the top. Julie is a beautiful and lovingperson, who was going out on a maternity leave, so we set up anappointment for me to see Jodi in February, 2004. I was sofrustrated and was determined that I was not going back to usingglue. So, I asked Spirit to help me figure out a way to keep thebutton 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 notperfect 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, whosaid he knew what happened. The bottom part of my stoma recessed and he thought hemight be able to fix it. Would I be willing to undergo surgery again. Spirit was with me and Iknew in my heart that it was ok to go forward with the surgery. So, Dr. Reece then reopenedmy stoma at the bottom and split the tendon in half from both sides and brought the halvestogether to form a completed circle at the bottom of my stoma. He still kept the other half ofthe tendon on the breast bone.

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

In April, 2004, I went back to MDACC and saw Julie, Drs. Lewinand Lemon who measured me for a new customized B-M Button. Ialso saw Dr. Reece. We were all so pleased with how my stomalooked: smaller, nice and round, and with a beautiful ridge all theway around. Two months later, I received that new customizedbutton 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 toMDACC:

?Had been using first customized b-m button with Maggie?s b-m button attachment sinceFebruary, 2004. Received new customized button on June 19, 2004. - wore new button forfour hours. Leaked a little at bottom. Did not pop out. Cleaned stoma and put old buttonback in so I can use filter during the night. While wearing, button is ?pinching? a nerve attop of reconstructive surgery scar sending stinging, painful zings up the left side of myneck. Also button ?pinching? a nerve at the bottom part of reconstructive surgery sendingpainful, stinging zings down left side of chest bone and over the ribs and into the leftshoulder. The stinging pains calm down after about an hour. The one in the neck kicks upoff an on. I also have a zinger from my original laryngectomy surgery which is on the top ofthe 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 stomafrom 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. Didnot leak or pop out. Cuts in stoma little deeper; neck red on outside approximately one incharound stoma.

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

June 23rd - wore new button for fourteen hours. No leaks and no popping out!!! Still havingzingers but I am used them by now. Changed my stoma care: I decided to leave the oldbutton out for the night to see if my cuts would heal quicker. Not a good move. The nextmorning, my stoma had shrunk to fifty percent of it?s usual size and was almost closed



morning, my stoma had shrunk to fifty percent of it?s usual size and was almost closedwith mucus and some blood. I cleaned my stoma as usual. The cuts are still deep but noinfection. 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 usingmy 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 onneck not expanding. Cuts inside healing slowly. Button calluses looking ok. At night, leftout old button for night and again this was not a good idea as my stoma shrunk and wasclogged with mucus and a little blood.

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

July 1, to present, July 20, 2004: No redness in neck. No cuts in stoma. Button callusesworking well. Now that everything is healed I can see new ridge from second surgery whichis making the great seal at the bottom as well as the new customized button with the ovalshape is completing the ability to have a great seal. Thanks to each of you for helping meget my miracle. I can now talk hands free, glue free, disk free and Maggie?s b-m buttonattachment free. What a blessing!! Thanks. Dr. Reece: There is a stitch in the surgery youjust did at the bottom of the stoma that has come up twice. It is not infected. It is similar tothe stitch that was in my leg that kept coming up and opening and healing and then openingagain. 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 todo anything.?

I went back to MDACC in September, 2004 for a follow up visit. We are all so pleased withmy 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 thestoma when I press on it. There are no cuts and no problems at all wearing the button. I stillwear my old customized button to bed to hold a filter during the night and since it is smallerin size, it lets my stoma shrink a little during the night so the new button continues to fittightly everyday.

Financial aspects of my journey: I am on Social Security Disability due to neurologicaldamages I received in a car accident in 1984 so I do not get much monthly income. I am alsoon Medicare and Medicaid. I went to MDACC in Texas from Florida six times in a year andhalf. I stayed in a hotel room for a total of two and half months. Medicare paid for eightypercent of all medical bills. Florida Medicaid would not pay for the remaining bills becausethe services received were out of state. I made arrangements with MDACC to pay for theremaining medical bills. It will take me another five years to pay off my bill in full. A smallprice 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 giveyou the phone number and individual to contact at Social Services. They can help you withinformation on assistance with air flights, hotels and other necessities. They were veryhelpful to me. Air Flights: I flew to MDACC via Angel Life. Their phone number is 1-877-247-



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 pilotsoffer their planes and their time free to those who qualify. I qualified because of my lowincome. I was a cancer patient undergoing rehab and both my doctor and social workerfrom Welfare filled out forms stating my needs. I used Angel Life just once because the nexttime I was going to MDACC, the weather was not good for small planes. So, instead ofcanceling my appointments, my friend and angel, Laura paid for me to take ContinentalAirlines. Continental Airlines has a good agreement with MDACC with lower fares and youcan change your dates if needed because your appointments got changed. You can do thiswithout paying a service fee for the change. Hotels: If money is not an issue for you, theJesse H. Jones Rotary House is an excellent place to stay. It is directly across fromMDACC. MDACC Social Services were able to help me stay at the Surrey House for a whilebecause of my low income. Then, the Surrey House helped my friend and angel, Laura payfor the remainder of hotel stays at a very reasonable rate. The Surrey House is not a plushplace but it is clean. It also has a table, refrigerator, and microwave,. There is a Super-Targetright 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 firstgot out of the hospital. They knew I was alone in my room so, if they got a call from my roombut didn?t hear anything, they would call 911 and send someone down to my room to helpme. Not all hotels would do that.

So, I was able to receive my miracle through the help of Medicare, MDACC SocialServices, 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 difficultyusing a B-M Button to talk hands free, you can contact Julie. And, please remember thatthere are NO GUARANTEES that the procedures and customized B-M Button will work foryou. MDACC will do their best but each of us has different challenges which require differentsolutions. Thanks for listening and contact me if you have any questions or comments. Ihave now been able to wear a B-M Button and talk hands free everyday for an average offifteen hours a day for the past eight months.

Do everything you can to reach your dream!

Yep, it?s me :-) Maggie from Florida, Email: [email protected]

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: [email protected]

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, Whisperson the Web for the Introduction to this series and Chapter One.

CHAPTER TWOTen more tips

http://www.webwhispers.org/news/mar2005.htm



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 timethat 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 yourprosthesis, sticking so well that it may disable your prosthesis. Many Larys swish andswallow Nystatin, a prescription medicine two to four times a day. Some dip theirprosthesis brushes into Nystatin and slide it into the prosthesis from the front. Peroxide ischeap and may help if used the same way but it foams annoyingly. A brush used daily, evenwith plain water, will keep the inside of the prosthesis clean. Other medications are theDiflucan 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! (Ithink 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 Nystatininto the prosthesis with a syringe. Unfortunately I think I lost some of it in my airway andcoughed much of the night.

TIP # 12: SHAMPOO WITHOUT FEAR

More than one Lary has been terrified of showering and shampooing, but there are ways todo it. For example, you can use a commercial shower guard which is a plastic deflector thatyou wear around your neck. Some people just wear their regular HME in the baseplate andsay it will deflect the water unless you allow the shower to spray directly onto it. Anothersimple idea is to bite down on one side of a washcloth and let it hang down while you bendforward under the shower spray. The cloth captures the runoff, keeping it away from yourstoma on its way to the drain. Memorably, other Larys have pointed out that you probablywon't drown in the shower if you get a little water down your stoma, but you will have amighty 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. Forexample, direct the heat or air conditioner vents downward so the airflow will blow over apan of water on the floor. You can use that same pan of water to periodically wet awashcloth which you then hold loosely over your stoma cover. Wet towels draped over theempty 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, andhumidified better, too, I could go farther without a coughing fit. When I got to the pointwhere I could ride a couple of miles without coughing, I started to drive again, but only on



where I could ride a couple of miles without coughing, I started to drive again, but only onroads 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 orfriend who can follow through or one connected to an answering machine. If you tape thenumber on, pay close attention to the placement, so it doesn't interfere with the charger orbattery. If you have a household engraver, you've probably already used it. Or visit yourjeweler 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 orlemon. Brushing your teeth often with baking soda may help. Keep trying differentsubstances to find what might help, even if only for a short time. There appear to be noreally handy hints for foaming or excess saliva caused by radiation, and the medical peopledo 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 thefoaming would eventually just stop. In the meantime I was advised to continue carrying mycup and tissue. It did stop, although once in awhile I am revisited. Drinking a cup of blackcoffee seems to help now. Interestingly, the reading I had done prepared me for dry mouthafter radiation, but I have never seen a question about dry mouth on WebWhispers. I haveseen 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 theliving room, then super-humidify your stoma with a saline bullet, spray water on your stomacover, or cover your HME with a wet washcloth. Think twice about common chores likeshaking 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, Iunfortunately used a recipe that called for sifting the flour. I threw the sifter out after thatexperience, 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 firstit will seem very faint, but still a real smell again. It's good for your appetite, and the steamcould help moisturize your stoma, too.

JB's note: The first time I really started cooking from scratch, the smell was a revelation. Ihad thought I'd never smell again, so I really appreciated how this most basic senseenhances 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 aprosthesis, you'll need a 7X or higher magnifying mirror with a light. Suddenly, you'll knowwhat 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 Biloxiprovided a fabulous, high-powered, swing-out mirror. As soon as I got home I went to mylocal bed and bath store where I was stunned by the variety of mirrors I could pay a lot ofmoney for.

TIP # 19: EXPECT EVERYTHING TO TAKE LONGER

Your doctors and SLPs can give you only estimates. Recovery from a laryngectomy and therelated cancer treatments is very complex and individual. People writing to Web Whispersoften 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 ofprogress by the days and weeks. Reading these progress notes is very encouraging andhelps you get to the next step.

JB's note: A "laringectomizado" writing from his website in Spain, describes his progressas "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, butimpossible for many of us. Many Larys simply don't talk at meals until they are totallyfinished. Gradually you may be able to know if your pharynx is clear enough that yourprosthesis won't clog with food, and you can intersperse eating with talking. If you havelearned 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 andpencil so I can carry on if I get stuck. My brother-in-law even sets out a clipboard andpencil 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 markingup the pages with your notes. Any questions for the doctor or SLP? Have you signed upfor 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 Donna McGary "That which does not kill us makes us stronger"

The Canary in the Coal Mine



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 ourculture. Tell the people you love who love you that you have cancer and watch as all theirfears, guilt, anger, and defensiveness erupt. Not at you directly, although the results can bedisconcerting. What do you say to a distraught loved one who responds to your lovingembrace, accompanied by the requisite "I'm OK", which you are trying really hard to hold onto at that moment, by sobbing, "I know, but I'm not". It's very odd, but sometimes it is easierto 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 uncomfortablewith that, because if you look well and aren't, then maybe they aren't either. I am not beingcynical or critical. It is very difficult to accept that one could look healthy and be sick. Itmakes us all fearful and painfully aware of the absolute randomness of the most seriousafflictions?there but the grace of god go I, resonates even for confirmed agnostics and, Isuspect, even for atheists who must sometimes confront their mortality with just a littlequestion mark. When you tell people that you have cancer, they go home that night andpay a little more attention to their families. They hold their loved ones a little tighter; theycall estranged lovers with more forgiveness than they previously thought possible and theyvow to be more humane and appreciative. You become the sacrificial scapegoat within yoursmall world that reminds all the people you love who love you that life is short and infinitelysweet and unpredictable and that they must treasure every uneven moment of it. You findyourself bathed in their loving support even as you try to protect them. Your world is soseparate from theirs as you trudge alone from one wing to another of all the world's greatmedical 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 isnothing romantic about this, my latest adventure. I don't want to be point person for mypeers' complacency about life. I want my own complacency back. I don't want to be yourheroic reminder of the fragility of life.

Present

I labor under the imperative to write, re-write and re-re-write again. However, for thiscolumn, 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. Sometimeswe 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. Itis like I was skinned alive and didn't know it. And I have heard from a number of you that itresonates. So I am not re-writing those first entries. But I will offer this caveat- that wasthen -this is now. It does get better. But it can be an imperceptibly slow process and onethat is defined by some odd markers. Not just the expected signs that your life goes on, likeanniversary dates of your surgery/treatments or routine CT scans that come up clean, butother more subtle signs. Like when you first meet someone and during introductions youwonder 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 duringwhich you & several others spoke, attendees tell you they could hear and understand you



which you & several others spoke, attendees tell you they could hear and understand youbest, because you enunciate and speak slowly and deliberately. Or when you stop beingafraid of the telephone (I still have trouble with that one!). Or, maybe when you startwondering, "What's the big deal?" when people say how amazing you are and what aremarkable recovery and adjustment you have made. But then you think back to when youfelt just like these journal entries?and you know what they say is true, "You've come a longway, 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 ofbaby 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 ofthe hottest names now are Emily, Hannah, Jacob and Michael. Checkit out here: http://babynamewizard.com

NEWS FLASH: YELLOW PAGES NO LONGER YELLOW

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

Search the Yellow Pages at A9.com and you'll find the usual searchresults, such as address & telephone, PLUS images of the storefrontsof all the buildings on the block. This Block View technology makes iteasy to observe the parking situation, the neighborhood, and checkout other nearby businesses.

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

http://babynamewizard.com/

http://a9.com/pizza?a=oyp



here: http://a9.com/pizza?a=oyp

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

ListServ "Flame Warriors"

Terms of Importanceflame 1. n. A hostile, often unprovoked, message directed at a participant of an internetdiscussion 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 ExampleBelow) ...

Target

Target is the guy everyone in a forum loves to hate. He brings thisupon 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

http://a9.com/pizza?a=oyp



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 ReedSee more of his work at: http://redwing.hutman.net/%7Emreed/

Welcome To Our NewMembers:I would like to welcome all new laryngectomees, caregivers andprofessionals to WebWhispers! There is much information to begained from the site and from suggestions submitted by ourmembers on the Email lists. If you have any questions orconstructive criticism please contact Pat or Dutch [email protected].

Take care and stay well!Murray Allan, WW President

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

Ron BeasleyRogers, AR

David BestEast Hartford, CT

Donna BronkemaMcBain, MI

Sven BrustnerDurban, South Africa

Bobbijo Cook - CaregiverStafford, VA

Joe Hunter - Larynx Cancer PatientDumfries, VA

Jerry JacobsPierre, SD

Marcia Kamprath - CaregiverPlano, TX

James KrauthPoint, TX

Barton LehrSt. Peters, MO

Gregg MitchellBlaine, WA

Ciro MangioneNutley, NJ

Christine Mitchell - CaregiverScranton, PA

Nereida Negron - CaregiverBayamon, Puerto Rico

Cindy Niglio - CaregiverPinellas Park, FL

Paul OsborneNorth Fort Myers, FL

Cathie Pallay - CaregiverBushkill, PA

Douglas PetersonLake Elmo, MN

Steve & Carol ShawHobe Sound, FL

Ann SnyderChesapeake, VA

David StrongMarietta, SC

Jennifer Turrubiate - CaregiverRosenberg, TX

Mary Vargo - SLPMars, PA

Thomas WattHercules, CA

Roger WestcottNorth Chelmsford, MA

http://redwing.hutman.net/~mreed/




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: [email protected]

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 Clubis eligible to receive tax-deductible contributions in accordance with IRS § 170.

? 2005 WebWhispersReprinting/Copying Instructions

can be found on ourWotW/Journal Page.

http://www.webwhispers.org/pages/Journal.htm

Documents

Murray's Mumbles Musings from the President Webmaster …Name Of Column Author Title Article Type Musings From The President Murray Allan Webmaster Gets Big Break News & Events