March 2005


 

Name Of Column Author Title Article Type
WebWhispers Columnist Bill & Kyle Bryan Water Survival With A Lary Education
Musings From The President Murray Allan Act Of Incredible Kindness News & Events
VoicePoints Jim Shanks Speaking Esophageally Education-Med
Living The Lary Lifestyle          Joan G. Burnside Chapter One Education-Med
Between Friends  Donna McGary Green Eggs & Spam Experiences
Bits, Buts, & Bytes Dutch Computer Tips Experiences
Welcome New Membes Listing Welcome News & Events

 


   WebWhispers Columnist
                                                                                  
Contribution from a Member
 


Water Survival with a Laryngectomy
by Bill & Kyle Bryan, Marietta, GA

     Many people may have enjoyed being on or around the water before their laryngectomy, but have avoided it ever since because of a lack of a suitable personal flotation device (PFD), one that would hold them high enough out of the water so that they could continue to breathe!  You've probably been told by your doctor to absolutely avoid any water sports whatsoever.  The purpose of this article is not to recommend you disregard your doctor's advice, begin shooting rapids in a canoe, take up windsurfing, or go back to water skiing but rather to enable you to provide an option to participate in safer activities such as simple boating, fishing, or perhaps duck hunting.  You just take all necessary steps to mitigate as many of the risks associated with these activities as you can and then make a logical and informed decision.

     Our son Kyle was diagnosed with cancer a couple of weeks after turning 14; a rhabdomyocarcoma tumor on his larynx.  After a year of de-bulking surgeries, implantation of a chemo-port, stomach feeding tube, a morphine pump, chemotherapy and multiple radiation treatments, the cancer returned in just a few weeks.  At age 15 his only option left was a laryngectomy followed by more months of chemotherapy.  Prior to surgery, the surgeon stated that he did not know what our hobbies were, but if they involved fishing or hunting around water, we could no longer do those because if Kyle fell in the water, he would drown.  My son and I really broke down at that moment (Frankly, I did so, more than Kyle) those are what we did together, and did them a lot.  The doctor paused when he saw our strong reaction to his statement, and revised his words, saying that life was full of risk management decisions; we needed to assess the risks, do all we could minimize them, and then proceed cautiously.  So that's what we did.

     After Kyle recovered from his surgery and completed his chemotherapy protocol, we found a PFD within the military, an inflatable Life Preserver Unit (LPU) called  the LPU-10. Unlike most inflatable 'horse collar' LPUs that hold up your front torso and wrap around your neck, the LPU-10 has two CO2 inflatable bladders, that, when activated, inflate under your arms like water wings.  We proceeded to a swimming pool and carefully tested it out in stages.  It worked!   But be advised that after wearing an LPU-10 for a number of hours, it gets very heavy on your shoulders.  You can add some type of padding to reduce the fatigue it may cause.  Now, will it work for you in 10 foot seas with the wind blowing 40 knots? Probably not! but that's where the risk management comes in.  If you're going out deep sea fishing, check the weather forecast; if it's bad, don't go!  Your boat should be in absolutely 1st class shape; if it's not, don't go!  Have you properly inspected and maintained your LPU-10?  If you haven't, don't go!  And never, ever, go alone!  (That's just common sense whether you've had a laryngectomy or not.)   Below are pictures of the LPU-10 so you can see what it looks like.  Ordering information follows:

LPU-10


LPU-10 Harness Assembly

LPU-10 Back View

LPU-10 Side view

To order the LPU-10:

Future LPU Possibilities:

     There is a spin-off of the LPU-10 called the Tactical Flotation Support System (TFSS).  It's comprised of two units that can be slid onto a belt on your left and right side.   It may be more comfortable to wear than the LPU-10 over time and it appears it should work as well, but we have not tested it and are a little uncomfortable with the belt attachment for security reasons.  We are attempting to get a sample of this TFSS so we can test it and confirm it is suitable before listing it on the web site with procedures for ordering.

Tactical Flotation Support System


TFSS Side View

TFSS Right & Left Unit

TFSS Single Inflated bladder

HIGH LIFT LPU

Another LPU has been developed called the HIGH LIFT and is undergoing Coast Guard testing at this time.  It's supposed to provide 40 pounds of buoyancy and 9 inches of freeboard with underarm inflation and should be available with both manual and automatic inflation options.  The manufacturer has agreed to provide a sample when it is approved for use for us to assess versus the LPU-10.  Our initial impression is that it may be more comfortable to wear over time than the LPU-10, but it remains to be seen if it will provide the buoyancy required.  Again, we will provide ordering information once our product testing is complete and this system is deemed suitable.


MD001 & MD002 High Lift

High Lift Freeboard Illustration

Pricing and Value

     All of these products described are inflatable LPUs. The good news is that they are far less bulky and less restrictive than a conventional life jacket.  The bad news is that the user must ensure they are maintained and inspected regularly to ensure they are in top working condition.  These products are not inexpensive:  the LPU-10 costs about $250 not counting shipping.  The TFSS and HIGH LIFT will be around $300 or a little more.  However, this may be a small price to pay if it makes it possible to safely expand your activities.

CONCLUSION

     Our goal is to provide those that monitor WebWhispers a way to get to LPU suppliers so that you can access information on them directly and order, if you choose, on the Internet.  But remember, it's HIGHLY recommended that if you place an order for any LPU, go test it on yourself in a controlled (swimming pool) environment with someone to help you if things don't go well.  Remember, if the CO2 cartridges fail to 'fire', the only way to inflate them is to blow them up manually, a task you probably cannot do alone!  The bottom line always is to assess the risk factors, take actions to mitigate as many of those risks as possible, and to ALWAYS use good judgment and common sense.

 

                Murray's Mumbles ... Musings from the President
 
   WebWhispers Member Commits an Act of Incredible Kindness
 
     Our Webmaster, Dutch Helms, reported this story to the Listserv earlier but I think the efforts taken by our member deserves to be told again for those that may have missed it.  It is truly inspiring and heartwarming and makes one PROUD to be a WebWhispers Member.
 
Dutch received a snail-mail letter from a gentleman in Haskell, OK and (edited to maintain the author's privacy) it read :
 
     " Hi. I am Harold M_____ and I have one of those talk boxes and I can't use it in the way they said I should be able to use it.  So I would like to know how I can talk on it so one can make out what I am trying to say.  I have worked on it for a year or a little more and I am tired of people making fun of me because I can't talk with it.  So, if you can help me out I sure would like the help.  Thank you.
 
Harold M_______,  Haskell, OK "
 
      Dutch sent this letter out to our members on the Listserv knowing that someone in "WW-Land" would come to Harold's aid.   Within two days a WW member had driven over 100 miles from his home in Miami, OK and established contact with Harold.  What was found was a man in obvious distress with severe depression.  Harold is 58 years old and had his surgery two years prior and since that time has not voiced a word.  He has been relying on paper and pencil to communicate and people were making fun of him because he couldn't talk.  It can be a cruel world!  Harold had an electrolarynx but the batteries were not charged and he had no one to guide or assist him in getting the unit to function
 
     When the WebWhispers Good Samaritan arrived and the scene was assessed, a call was made to an anonymous vendor of laryngectomy supplies.  Let's call him "Art".  This vendor promised to have two Servox batteries sent that day.  Meanwhile, the Good Samaritan instructed Harold how to find the "sweet spot" so that he could be easily understood.   As promised, a phone call was later made back to the vendor and Harold was able to say "Hello, Art".  Needless to say, Harold was in tears after not being able to voice for two years.  Emotions were running high and our member continued to work to help Harold improve his technique with the instrument.  Meanwhile, "Art" was making arrangements to have Harold seen (at no charge) by an SLP at a Regional Medical Center.
 
     So now we have seen the work and dedication that our members are willing to undertake with no thought of gain for themselves but merely for the satisfaction of helping their fellow man.
 
     Well, I think it would now be fair to ask who is this Good Samaritan?  His name is Sam Beights, and he is 78 years young and hails from Miami, OK.  Sam will be following up on Harold and no doubt visit him again in the near future.
 
     If you would like to drop Sam a note and thank him for performing "above and beyond the call of duty", members can obtain his Email address from the WW member listings or comment to the WW ListServ.  Others may wish to comment to the Editor.
 
     Great job, Sam.  It just makes one PROUD to be a WW Member!!  And THANK YOU, too, kindly anonymous vendor!!!!
 
Take care and stay well.
 
Murray
 


 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

SPEAKING ESOPHAGEALLY
by Jim Shanks, Ph.D

            This message is intended for a limited audience:  1) the individual laryngectomee who does not have access to a qualified teacher of post-laryngectomy speech, and 2) the individual speech-language pathologist (SLP) who has not had special instruction in all three voice options for speech after laryngectomy.  The message focuses on esophageal speech (ES).  Although you can learn to ride a bike without knowing how it was built or works, the following explanation is offered to all 'bike riders'.

            We know that laryngectomy surgery means: no voice box - no voice.  Historically, ES was the primary or only choice for many decades after laryngectomy surgery became successful in saving lives.  To the quantity of life should be added quality of life.  To be without voice or speech is a tragic circumstance.  One has to be haunted by the tale of a man from western Indiana who had his operation in St. Louis.  At his post-op visit, the patient was told by his surgeon that although he (the doctor) did not know what was involved, he understood that there was a way of learning to speak again.  After the Hoosier came home, every day he silently tried to form words.  After 6 months, as a burp came up, the man said a word, then toiled to imitate his chance sound.  When he was able to count to ten out loud, he went to bed to have the best sleep he'd had in half a year!

Getting Air In!

            For those who have the good fortune of not undergoing laryngectomy, to talk involves using air power to drive vocal cords in the voice box, or larynx.  This cord action is like the sound of the 'Bronx cheer' (raspberry).  Lung air can be pushed out from the mouth between lips half together with some tension.  This sound is voiced, has pitch and loudness.

            Whereas the lungs can hold 4,000-6,000 cc of air, the food tube (esophagus), holds only 100 cc.  This dinky tube, running up and down behind the wind pipe (trachea), can serve as a substitute storage tank for air.  Usually the tank has only a small bubble of air (taken in while swallowing food or from gas-producing food).  In order to serve as a new lung, it is necessary to move air down from the throat into the esophagus.  At the top of the esophagus is a ring of muscle that is usually closed tight. This muscle ring serves as a cap on the gas tank that is the esophagus.  Gas getting into a car's tank goes only 1 way: down.  Likewise, food going through the esophagus into the stomach goes only down.  Getting air into the esophagus is not so simple. Getting air into the esophageal tank may be by either of two ways: inhaling or injecting.  You can even think of it as kissing or spitting at the lips.  We think there are more spitters, but many of us prefer kisses.  It's hard to do both at the same time!  Esophageal speakers may be divided into inhalers or injectors.  The key: where is the pressure to fill the tank.  Inhalers have negative pressure below to pull air in.  Injectors have positive pressure above to push air into the esophagus.

            Bringing air up and out from the esophagus actually generates esophageal voice.  But the real problem is getting air in first.  To help a person feel air being sucked in (as the inhalers do), we may consider parallel actions.  To hiccup is one example.  To sniff is another.  To yawn is yet another.  To gasp is another.  Breathing air into the lungs may parallel breathing (i.e., inhaling) air into the esophagus.  This is facilitated by first exhaling lung air, then raising the head and chin while inhaling.  A smoker may imitate getting a 'drag' on a cigarette/pipe/cigar.  Achieving esophageal inhalation involves two different acts:  (1) reducing the tension of the muscle ring at the top of the esophagus, and (2) further lowering the pressure within the esophagus. Pressure within the esophagus is negative at rest and varies with pulmonary respiration, becoming more negative when the lungs inhale air. This greater negative pressure literally sucks air from the throat down into the esophagus - assuming one can get the muscle ring at the top of the esophagus to open up!

            The injector uses a different scheme to force air from the throat down into the esophagus using the lips and/or tongue.  An obvious action that one might think is parallel is swallowing.  In the old days a 'new' laryngectomee might have a glass of water to sip.  Water is a fine product - for bathing, wetting one's mouth, getting food to move south. However, swallowing is not the same as injecting air into the esophagus for speech purposes.  For one thing swallowing involves much greater pressures along the length of the vocal tract from the tongue tip to the bottom of the throat. Additionally, when one swallows food, the esophagus is quite intent on moving the material all the way down its length and into the stomach, usually a 'point of no return'.  If the intent is to get air into the esophagus, one might think about swallowing carbonated liquid (beer, soda pop) or eating gas-generating foods (cabbage, beans).  There are similar problems with this approach. To create air in the stomach from carbonated drinks or gas-generating foods is not the same as injecting air just part-way down the esophagus. We want air to enter the esophagus, but not proceed to the stomach. While a savvy esophageal speaker can take advantage of air that inadvertently made it to the stomach and plans its own return, one is better able to control the return of air if it never descends further than, say, the upper to middle part of the esophagus  (Also, we won't go into other horror stories involving carbonated beverages, beans, and cabbage: having beer for breakfast, feeding beer to a recovered alcoholic!)

            Raising pressure in the throat may be facilitated by: puffing out the checks, whistling, whispering, blowing out a match, trying to blow up a balloon or manometer, blowing the nose, swallowing while holding the nose (a Valsalva), 'starting' to swallow, or saying speech sounds (p, t, k, f, s, sh, ch) which are voiceless consonants involving increased air pressure from the mouth.  Some people learn to 'burp' as children or to relieve excess stomach air.  Seldom do we find people trying to pump air into the mouth/throat, as with a tire pump or an inflated balloon.  Inhaling is apt to be accompanied by raising, injecting by lowering, the head.

Getting Air Out!

            Having gotten air into the esophagus, one might assume that it is a simple matter to release the cap on the gas tank for voice.  Not so.  Mother Nature doesn't like to be fooled.  She tells the body to push down on contents from the esophagus into the stomach, like milking a cow.  Putting milk up into the udder is not so easy (vomiting is the exception!)

            The diaphragm is a muscle for inhalation - breathing air into the lungs.  Opposing it in exhalation are abdominal muscles (running up and down in front of the belly) which squeeze in from below to force air out of the lungs. For esophageal speakers, abdominals also are responsible for pushing speech air up and out - but this time out of the esophagus.  In fact, good esophageal speakers use less vocal volume and muscle effort than a non-laryngectomee using the diaphragm.  Some laryngectomees think that they can talk while 'holding their breath' but it can't be done!

            Esophageal voice can be identified/described in three ways: pitch/frequency, loudness/intensity, and rate/time.  The first letter of the second term makes a word.  'FIT'.  This acronym has been discussed elsewhere.*  Perhaps the concern of getting a voice causes us to think that once a voice is acquired, nothing more is needed.  Not so!  Speech must be understood as well as heard! Good esophageal speakers are able to manipulate the 'F' (frequency), 'I' (intensity), and 'T' (time they are able to produce esophageal sound).

            To change voice into speech involves letting the 'Bronx cheer' from the top of the esophagus vibrate (or resonate) through three cavities:  throat, mouth and/or nose.  Lips and tongue are then moved to articulate individual sounds.  Without getting technical about every speech sound, we should agree on how to judge speech.  Vowel sounds (15-25) outnumber vowel letters (a, e, i, o, u and sometimes y). In esophageal speech, vowel sounds usually are understood, even as accents.  Only when significant damage has been done (i.e., to the tongue) will there be errors.

            However, boo-boos occur too often on consonants in esophageal speech.  Here we address only the main errors to be expected.  If we are not careful, we may lose some hiss in sounds like 's' and 'sh'. The 'hiss' or noise is what gives these consonants their characteristic sound - without it, a listener may detect a sound other than the one intended by the esophageal speaker.  Some consonants are voiceless (p, t, k, f, s, sh, ch, h, and th as in thumb).  However, the very voice we sought can be over-done, thus distorting the voiceless into a voiced consonant  (p, t, k, f, s, and sh become b, d, g, v, z, and zh). For those with a larynx, the difference between a voiced or voiceless consonant can be felt by placing a finger on the side of the larynx/voice box while saying the sound. (See previous article beginning HERE.) There's a vibration that can be felt for the voiced, but not the voiceless sounds. When everything becomes voiced (as often happens in esophageal speech), the resulting faulty sound pattern can resemble pseudo bulbar palsy or inebriated speech.  Correcting it lies not in dropping voice, but in adding more pressure to the sound emerging from the lips when making the voiceless sounds.  When learning esophageal speech, a moist finger, strip of Kleenex or whistle placed at the lips may help the laryngectomee speaker monitor the extent to which pressure is exploded from the mouth when talking.  Voiceless consonants have more air power!  One nasty voiceless consonant is the 'h' which baffles all laryngectomees.  To avoid sounding like a Cockney from England, we borrow from another country.  'I' ('ich' in German) uses a prolonged kiss of the back of tongue against the roof of the mouth.  The same sound is in Scotland (loch/lake).  We get the same result by saying 'k' as a non-stop prolonged consonant: for the good esophageal speaker, saying the word 'hair' lies between 'air' and 'care'.  Finally, three sounds are supposed to go through the nose: ?m, n, ng? as in the word ?morning?.  The back part of the mouth (palate) must lower, letting sound and air into the nose to get the nasal tone. Some esophageal speakers don't let the palate down when making 'm, n, ng.' This common error makes the word 'morning' sound like 'bordig.' Again we may invoke a wet finger, this time placed just underneath the nose to feel whether air escapes nasally on these sounds.

What's In Store

            The outlook for the continued use of esophageal speech is grim, at least in the United States, but also in many other parts of the world. Esophageal speech is the least utilized form of alaryngeal speech.  Although the ES Speaker is less dependent on things - no device to carry, no prosthesis to insert, clean or replace - it takes longer to learn, has limitations of rate (fewer words per minute), takes more time to re-load air for speech, and has fewer physicians and SLP's who recommend it and even fewer who can teach it and trouble shoot problem cases.  Although artificial larynx and tracheoesophageal speech (TEP) may cost more, these days, those costs are more apt to be covered by insurance or physician fees than SLP therapy sessions to teach esophageal speech.  In addition, the preponderance of TEP success has lead to less teaching of esophageal speech in IAL clubs.  Fewer IAL clubs and fewer IAL members portend a shift from peer support to highly specialized intervention.  Support for the continuance or existence of IAL Voice Institutes is eroding.  Historically, the IAL Voice Institute has been a primary vehicle for training clinicians and laryngectomees how to train others in esophageal voice use.  Few university programs in speech pathology include ES in the curriculum, at least not to the extent needed to prepare clinicians who are both confident and competent in offering this voice option.

            Surgical specialization in voice restoration after laryngectomy is becoming a sub-specialty, even within the specialized field of ENT physicians.  The role of ES can be expected to diminish more and more, at least in most parts of the world. Perhaps esophageal speech will continue to have a place in certain areas, although even this is not a guarantee.

            Although we began with a focus on voices after total laryngectomy, we conclude by stressing speech and communication.  This reinforces our goal of helping individuals cope with an unusual problem in living fully. Each of the three primary alaryngeal speech options ' AL, TEP, and ES' has advantages and disadvantages over the others. Although it has become rare given the current direction of alaryngeal voice rehabilitation, there will always be those for whom esophageal speech remains not only a viable option, but perhaps the best option. The question will be whether anyone can teach it to them. Or will they stumble upon it on their own as our Indiana Hoosier did several years ago.



IAL 2005 - Boston
30 Aug - 3 Sep 2005
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4 - 11 Sep 2005
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WW Attending IAL 2005
See List HERE



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

 

INTRODUCTION

Welcome new Lary!  These tips represent my learning process during the year following my laryngectomy with the help of the WebWhispers on-line support group and the Speech Pathology staff at MD Anderson Cancer Clinic and Hospital in Houston.  I hope the tips will give other new Larys a jump-start on the road to a new life and remind experienced Larys of just how far they've come.

I am grateful to all the WebWhispers members for sparking many of these tips and for welcoming my contributions and questions on the web.  I am indebted also, to the speech-language pathologists at MD Anderson because their admirable service inspired me to expand and update my speech-language pathology background.

These tips have been written from the viewpoint of a patient and are intended only as a supplement to the professional advice and treatment offered by physicians and speech-language pathologists who specialize in the treatment of laryngectomees.

Joan Burnside, MA
College Station, Texas
February 2005

Chapter One
The Top Ten Tips
 

It is easy to go down into Hell;
night and day the gates of dark death stand wide;
but to climb back again,
to retrace one's steps to the upper air
 - there's the rub, the task.

~ Virgil, 'Aeneid' ~

TIP # 1:  FIRST AND FOREMOST, REMEMBER THIS:

LIFE WILL BE GOOD AGAIN
AND IN WAYS
THAT YOU MAY NOT
EVEN BE ABLE T0 IMAGINE
AT THIS MOMENT.

JB's note:  This first tip is woven through the messages on the WebWhispers e-mail list.  It is often an addition to the answer for a specific question or sometimes a type of closing.  The words and writing styles vary widely, because the tip is the expression of many individuals. 

However, Tip # 1 has but one voice, that of the person who is Living the Lary Lifestyle.

TIP # 2:  KEEP YOUR STOMA MOIST

This may be the most basic and frequent self-care answer on WebWhispers, the Internet message board for Larys.  The stoma in your neck is now your lifeline, directly connected to your lungs.  Your very breathing depends on keeping it functioning well.  Without additional moisture, the mucus collecting in your lungs can harden into plugs that cut off your breath.  A dry mucous membrane also can become irritated, crack and bleed.  Your stoma will stay healthy if you squirt it with a saline bullet or spray several times a day.  Supplemental moisturizers include using room humidifiers, steamy showers and personal or facial steamers.  Other Larys just wet their stoma covers.  Drinking lots of fluids will help your stoma, as well as aid the rest of your bodily functions.  The heat-moisture exchanger helps tremendously.

TIP # 3: USE AN HME.

Your nose is no longer filtering and moisturizing the air that goes into your lungs, so you are now coughing up mucus and impurities.  This can be very irritating and may call more attention to yourself than you want.  Coughing also interferes with your sleep.  The Heat-Moisture Exchanger, (HME) fits over your stoma.  It transfers the heat from your exhaled breath to the breath you are inhaling.  It filters and moisturizes at the same time.  The HME will greatly reduce your coughing in a few weeks.

JB's note:  I noticed that I slept better on the first night.  I also liked the fact that I could just press the HME to occlude my stoma and didn't have to use my thumb to speak.  When I don't wear the HME, I start coughing again, immediately.

TIP # 4:  CARRY AN EXTRA, CHARGED BATTERY

This will save you the trouble of having to return home or interrupting some important business. Your electro-larynx battery will run out.

JB's note:  This is something  you would figure out anyway, but wouldn?t it be nice never to have this happen?  Especially when you're new to the game and may be embarrassed or discouraged?

TIP # 5:  CLEAN YOUR PROSTHESIS WITH A BRUSH

Brush at least three times a day.  Your prosthesis will clog with mucus on the airway side and with food and mucus on the esophageal side. To clean it, flush water into the prosthesis with a syringe, then insert the brush and pull it out with a twirling action.  Repeat until it's clean.

JB's note:  At the beginning, I didn't see stoma and prosthesis cleaning as separate chores, nor did I even use a brush.  I had been issued a little stick which was supposed to push any clogs out.  Then I read a number of e-mails on WebWhispers about using a brush.  Several Larys recommend carrying an easily accessible brush (in a shirt pocket?) for immediate voice fixing, wherever you are.

TIP # 6:  SIT UP STRAIGHT

This is how you will get your food down and keep it there. Acid reflux stays down better, too.  This principle also helps with your breathing.  Some Larys say they sleep sitting up.

 JB's note:  I was startled when food just rose back up into my throat and mouth.  After that I stood up whenever I had the slightest inkling it was going to happen again.

TIP # 7:  BUILD UP YOUR LUNG POWER

Now that you're a Lary, your lungs don't have to work as hard to get air.  Without  the resistance of your nose and mouth, your lung capacity decreases, so you'll have less oxygen for your blood, brain, muscles, and the rest of your body. You can restore your lung power by walking, bicycling or going to the gym.  Have some physical activity every day, no matter how little.  One Lary suggest working toward the 20-minute mile.  The HME will also provide the resistance you are now missing and will improve your stamina.

JB's note:  When I first started walking my dachshund, Spike, he was pulling me down the block.  Now there is often slack in the leash, and he begs to go home before I'm ready.

TIP # 8: GET A GOOD SEAL FOR YOUR BASEPLATE

Brush additional adhesive on your neck and let it dry for at least five minutes, not the recommended two or three.  Use a timer to make sure.  Your seal will last longer, saving you time and inconvenience.  What's a 'baseplate'  It's a sort of adhesive bandage with a rimmed, circular opening for your stoma.  You snap your Heat-Moisture Exchanger (HME) into the rim.  A good seal is essential for speaking, because now you use the HME instead of your thumb to occlude your stoma.  If the seal breaks, the air leaks around the edges of the baseplate and you will be voiceless or nearly so.

JB's note: Believe me, the five-minute rule works.  When I wait the full five minutes, the longevity of the seal improves markedly.  Also, one day while reading WebWhispers, I picked up the idea of brushing the adhesive onto my neck. Somehow, I hadn't understood that for awhile.  It was an aha! moment. 

TIP # 9:  WASH YOUR FOOD DOWN

with warm liquids such as coffee, tea, or water without ice. Swallowing is a big problem for many of us. We're told to thin and thicken, puree and blend, but seldom told to move the food along with swallows of liquids.  Why warm liquid?  Think about rinsing dishes after a meal.  Which works better, hot or cold water?  You'll be able to eat a greater variety and quantity of food and possibly eat faster with this tip.

JB's note:  I gleaned the liquid wash down idea from a WebWhispers e-mail, but later figured out that restaurant ice water doesn't help much.

TIP # 10:  REHABILITATE YOURSELF

 Don't just depend on the professionals.  Getting online with the WebWhispers e-mail list will let you listen in on many questions, answers and ideas.  That, alone, will teach you about the side effects and aftermath of laryngectomy and all the related cancer treatments.  You can ask questions at the very moment you experience a problem and often start getting answers within the hour. You'll learn about options for treatments and services along with self-help ideas. It will help you ask questions of your doctor or speech-language pathologist.  If and when something unexpected happens, and there's always something, you may have already heard of it.

JB's note: A flurry of e-mail about radiation-caused dental problems ended just as my teeth started breaking off.  I had been aghast when I first read other Larys' comments, but when it happened to me, I already had the mindset required for dealing with a major setback!

LET'S TALK

Reading just this far may have worn you out, so take a break and consider the tips you may want to investigate, thoughts you want to remember or anything you may want to do or express. Get some paper. Write or draw it as a reminder.

See you next month with 10 more tips for the Lary Lifestyle.



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

Green Eggs and Spam

 April 24, 2000 - My Journal

I am drawn to my computer nightly the same way my little brother used to watch the 4:30 horror movie in our TV room.   He would moan and squirm, but refuse to turn it off as he watched, through fingers spread apart, the giant bloodsucking octopus snatching the unsuspecting lovers from the bank of the pond.

I say to myself, "Put the mouse down and step away from the computer"?but I cannot.   I go to websites for people with my disease and I read about everything bad that can happen to me.  I cannot help myself.   I read about terrifying surgeries that might save my life and wonder how I can tell the people I love who love me that I would rather die than live with a hole in my neck because I could again never dive into the ocean or paddle a canoe for fear of drowning.   How can I tell them that I still have nightmares of being strangled, because that is how it felt all the time before the doctors found out what was wrong with me.

 The euphoria I felt when I awoke from the debulking of the tumor has long since past. That is such an inelegant term, 'debulking', for the remarkable procedure that transformed my breathing from heavy, wet, matted down terry cloth lungs to butterfly wings of silk that made me high in praise of oxygen.   It took some time before I realized that the wonderful surgery was the good news.  The bad news was much more complicated.

Like my little brother, I want to know things I am afraid to know, but shielding my face with my fingers does not help this time.  Sometimes, I cry, but I am not sure why? Is it because I am afraid or am I just really mad and confused because there isn't anyone out there who can tell me what to do?  This really sucks and I would hate to be my doctor now.  The good ones know they don't have all the answers and he's a good one and he wishes he could tell me something different, but he can't.

Medicine is still more of an art than the science that many practitioners want to acknowledge and that is never more evident than when you are dealing with rogue cancers.  So there,  I said it, CANCER CANCER CANCER.   I have CANCER and I don't want to hear from one more well meaning person who says  "If you have to have cancer this is the one you want?or this is the site where you want to have it."

I don't want it here, not there, not anywhere! I don't want this cancer, not here, not now, not ever! I sound like Dr. Seuss? Make it go away!

I do not want green eggs and spam! It is ugly, I do not want this cancer, said Donna! It is not who I am - It is not who am.                                                                                                    

Present

In re-reading this, I realize that it was not my well-meaning friends and family nor my doctors, who were making the pronouncements about this cancer being better than other types of cancer - that was my own desperate attempt to convince us all that this diagnosis wasn't all that bad.   

And I was right, in many ways.  It wasn't terminal; I had options and I had time.  So I thought I could breeze through treatment, bounce right back, and in six months, no one would know the difference. 

I was wrong this time.  Six months later, my favorite doctor told my brother that if the tumor had been a few centimeters lower, I'd be out water skiing instead of back in the ICU struggling to breathe.

I still have a hard time saying I had cancer when I meet new people - I prefer to cushion the blow by saying, 'when I got sick'.  They always recoil in such horror and sympathy if I say the 'c-word', it makes me uncomfortable.  Then I'm right back to telling them everything is alright, when it really isn't - but who wants to keep talking about it?

Everybody deals with change differently.  Some of us are able, through a combination of background and personality, to pick up the pieces and keep on marching.  Others may find change damn near overwhelming.  When we find ourselves in these opposing camps, it is easy to become critical and defensive. A diagnosis of cancer is life altering - no matter how you look at it. One of the real benefits of a group like WebWhispers is that it gives us all a chance to 'meet' people who are struggling and others who are thriving.

If we are struggling, those who are thriving give us hope.  If we are thriving, those who are struggling keep us humble. We, more than most, understand,"There but for the grace of God, go I."

In closing, one of my favorite quotes from Mark Twain:

"Only he who has seen better days and lives to see better days again, knows their value"

 

   From Our Foto Shoppe   



" Here is a good one!  This was taken from our pontoon boat.  I found
that if I put the electrolarynx to the bottom of boat and "buzz" with it,
if there are porpoises around, they will come to the boat and play.
I've done it 3 times and they came!  Wild! "

- WW Member Jack Ramos, Hudson, FL -



                          Dutch's Bits, Buts, & Bytes

(1) It's Update Time!

     It's update time!  If you have Windows XP and/or if you use Internet Explorer 6, fire up Internet Explorer and run Windows Update by either choosing Tools > Windows Update or going to  http://www.windowsupdate.com/ in MSIE.  Microsoft released a dozen patches last month, eight of which are critical.  Run the Express Install and get all the critical updates -- I think I ended up downloading a total of 10 updates on my XP desktop -- and be prepared to restart your computer when you are finished.  Make sure to run Windows Update a second time just to double-check you have all of the available updates.

     If you have Norton Antivirus--or, for that matter, almost any other Symantec product--make sure to manually run Live Update by opening your Symantec or Norton product and clicking on the Live Update button as soon as possible.  There is a flaw in a bunch of Norton/Symantec products that could potentially cause those products to open and run a virus rather than kill it.  Argh!  Fortunately, there's a patch that fixes this flaw.  And, of course, Symantec's patch requires you to restart your computer when you are finished.

(2)  A "Fax" Issue on Windows XP

Question:  "After finding out that Windows XP has faxing capabilities, I opened it and am very pleased with sending faxes.  However, when receiving faxes, I try to open them and get a window saying "Fax document cannot be displayed because your operating system does not have a default view for fax documents (.tif files)."  What can I do to correct this problem?"

Answer: The Windows XP fax utility saves incoming faxes as a .tif file.  This is an image file similar to .gif and .jpg files.  Not all image viewers can display a .tif file, but Windows XP comes with a program called Windows Picture and Fax Viewer.  You simply need to associate .tif files with this application.  To make the association, right click a .tif file and select "Open With."  You will then be presented with a list of applications on your computer. Just choose "Windows Picture and Fax Viewer," and you will be all set.

(3) A "Priceless" Voice Mail:

This is truly "bring you to tears" funny!  So crank up your speakers before playing this three minute MP3 audio file!!   You have got to take the time to listen to this ... it is hilarious!! 

"An operations manager for a "Jack in the Box" franchise was late for a meeting and called his boss to tell him he was running late.  While he was leaving the Voice Mail message, he witnessed a minor car accident and went on to provide a descriptive "play by play" of the whole incident.  This is the actual Voice Mail message.  It was forwarded so many times within the "Jack in the Box" community that it crashed their Voice Mail server."

Listen & laugh yourself silly at: http://home.swbell.net/kf5tv/voicemail.mp3

(4) Membership List Issues:

      As some of you may recall from our last Semiannual Report, we noted that we ended CY2004 with 1,255 laryngectomee/caregiver participants listed on our Participants web page.  But even then we felt this figure was probably in error, since we surmised we had many self-proclaimed "inactive members" and also many "active members" listed whose Email addresses were no longer valid and we had thus lost touch with them.  So, beginning in mid-January and now continuing on through mid-March, we have been conducting a thorough checking and clean-up of our "membership" lists.  We have contacted the "inactive members" and asked them if they still wanted to be listed and we have contacted those on our "vacation list" to validate their desired membership status, too.  Finally, we continue to send private "update" Emails to ALL our members in an orderly organized manner to determine the validity of the Email addresses they have on record with us.  We are now about one third of the way through this time-consuming, yet vital, process.

     To date, we have made some rather amazing discoveries: 85 of our Inactive Members had bad (undeliverable) Email addresses; 97 more of our Inactive Members expressed no further interest in remaining Inactive Members
(to include 5 SLP's); about 82 members on our Vacation List either had bad addresses or wished to be totally removed from our listings; and finally, in sending our private "update" Emails to our members, we have thus far discovered an additional 43 members whose Email addresses were undeliverable.  As a result, we have deleted from our membership listings all those whose Email addresses were found to be invalid and those who expressed no desire to remain listed with us.

     So, although we have added 64 new members in January and February (meaning we might now have claimed 1,318 lary/caregiver participants), our laryngectomee/caregiver participants number on the web site now (on 28 February) reads a lower, but more accurate 1,066 - reflecting the "de-listings" we have made over the past six weeks, in addition to the "passing" of nine active members since 31 December 2004.  We hope this ongoing effort makes for a more up-to-date and reasonable membership list and we will TRY to keep these lists as accurate and current as possible in the future.  We should be through with this major housekeeping effort by middle or late March.
 

 

   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) ...

Whisper

Whisper maintains a benign demeanor and carefully avoids open conflict.
When aroused, however, she will send vigorous attacks to sympathetic
forum participants via private Email in an attempt to sway the tide of battle.
A typical Whisper maneuver is to "accidentally" post an ambiguously critical,
but ostensibly private message to the discussion forum, e.g., "Dear Mary -
see what I mean about this guy?" Or, "John - did you read what Bill said? I
rest my case!" When challenged she will protest (disingenuously) that she
hit the "reply" key by mistake, that the message was never intended to be
read by forum participants, that the message was out of context, etc.
Whisper's intent is to gain a tactical advantage by leaving the impression
that her side in the conflict is gathering heavy forces just over the horizon,
and though transparently obvious to veteran Warriors, this feint can often
blunt a successful attack by less experienced fighters.

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 31 new members who joined us during February 2005:

Kate Arnold - SLP
Houston, TX
Kathy Barker - SLP
Sherman, TX
Scott Brandt
Montara, CA
Harold Caddell
Union, KY
Sharon Congdon
Warwick RI
Leah Dagenais - SLP
Vancouver, BC, Canada
Carole Doughty
Millinocket, ME
Benny Fincher
Spring, GA
April Flynn - Home Health Nurse
Chesapeake, VA
Bonnie Franklin
Montgomery, AL
 Debra Frisbee - Respiratory Therapist
Castalia, OH
Nicola Glancy - Head & Neck Nurse
 Bettystown, Co. Meath, Rep. of Ireland
Jeannie Goraleski - Caregiver
Riverside, CA
Jerilyn Jackson
Jay,ME
Ann Kearney - SLP
Portola Valley, CA
Cathy Koontz - Caregiver
New Eagle, PA
Randall Krone
Dallas, TX
Carol Legault - Caregiver
Surrey, BC, Canada
Paul Macholz
Colorado Springs, CO
Wayne Mansfield & Lisa Simpson
Jacksonville, FL
Juli Matthews - Caregiver
Miami, OK
James Oberting
Louisville, KY
Kevin Oliver
Ulladulla, NSW, Australia
Colin Pignatelli
Highworth, Swindon, UK
Marvin Ragsdale
Cambridge, OH
Robin Reid
Wokingham, Berkshire, UK
KCinnamon Stacy - Caregiver
Redford, MI
Annette Taft
Anniston, AL
Christine Urban - Caregiver
Vienna, Austria
Art Wegweiser
Edinboro, PA
 
JoAnn Wuepper
Bay City, MI
 



  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.