|Name Of Column
|Musings From The President
||Webmaster Gets Big Break
||News & Events
||Corina Van As-Brooks
||Lary& Sense Of Smell
|Musings From The President
||News & Events
||Maggie H. Geehan
||My Dream Is Realized
|LivingThe Lary Lifestyle
||Joan G. Burnside
||Canary In Coal Mine
|Bits, Buts, & Bytes
|Welcome New Members
||News & Events
Murray's Mumbles ... Musings from the President
Webmaster gets his big break in El Lago, TX
Now that I have your attention I must say that there is bad news and good
news in El Lago, TX, the home town of our Founder and Webmaster, Lt. Col.
David L. Helms, USAF (Ret.), who is known to us all as Dutch.
"What", you may ask, "could have occurred in this sleepy
Texas village which nestles on the shores
of Clear Lake and Galveston Bay?" Well here is the BAD
news from February 28th, 2005.
While Dutch was running a quick errand so he could
immediately return to WW Central, in order that those all important emails
that we all read could be checked for authenticity and rerouted, he had an
While skipping down a rain covered
staircase in his apartment complex, a terrible thing happened. While just a
third of the way down the stairs, Dutch slipped and tumbled the rest of the
way, losing his right shoe in the process and banging his shoeless right
foot into two of the metal stair rails.
Fortunately, a neighbor heard the noise and was there
in a heartbeat. Dutch was heard to say "My foot hurts like heck" (or words
to that affect). He was rushed to hospital where X-rays were taken and it
was determined that Dutch had two broken small foot bones plus cracked the ankle and
heel bone. The skin on the bottom of his right heel was split open and was
And now for the GOOD news. Dutch was
treated promptly at the hospital and fitted with a
foot cast to take the pressure off the heel. He now had an
excuse to be a Professional Couch Potato for the next six weeks, at least.
He has many friends and neighbors to help when necessary as walking is
difficult and driving almost impossible. However, he is still a whiz at the
And how was your month?
Take care and stay well.
PS: Update - Dutch's cast came off on 10 April and he is now walking and
driving fine ... all is AOK!!
? 2005 Dr. Jeff Searl ]
coordinated by Dr.
Jeff Searl, Associate Professor ( firstname.lastname@example.org )
Hearing and Speech
Department, The University of Kansas Medical Center
MS3039, 3901 Rainbow
Blvd., Kansas City, KS 66160
Laryngectomy And The Sense Of
How It Works And How It Can Be Restored.
By Corina van As-Brooks,
Amsterdam, the Netherlands
The loss of the sense of
smell (or loss of olfaction as it is also called) is one of the consequences of
total laryngectomy that does not receive much attention. Nevertheless, olfaction
is an important sense in daily life. For instance, if you think of smelling gas,
fire, or spoiled foods to alarm you, or smelling a nice perfume, or food that is
so good it makes your mouth water, it is not hard to imagine that the loss of
this sense has a considerable impact on daily life.
The olfactory organ is
located high up in the nose (see Figure 1). This organ has elements that are
able to trap odor molecules when the air flows by it. The information about the
odors is then sent to the brain via the nerves and the odor is recognized.
For this mechanism to work,
it is essential that the air containing the odor molecules passes the olfactory
organ. Normally, air passes the olfactory organ each time someone breathes in
through the nose (see Figure 1).
Research has shown that
following a laryngectomy, people are not able to smell as well as before the
operation. In a study at the Netherlands Cancer Institute, with 63 patients
participating, odor tests showed that 68% of the laryngectomees in that study
were considered non-smellers.
The underlying reason for
this problem is the absence of airflow into the nose (see Figure 2). Since
laryngectomees are breathing in and out through the tracheostoma, the air simply
does not reach the olfactory organ high up in the nose. The olfactory organ
itself is unaffected by the surgery. This means that when the odor can reach the
olfactory organ, you will smell it. This happens for instance when the odor is
literally blown into the nose, or when the odor is extremely strong or
Rehabilitation of olfaction
There may be situations in
which it is actually an advantage not to be able to smell automatically but in
most situations it would be nice to be able to smell. At the Netherlands Cancer
Institute a technique has been developed that can help laryngectomees to learn
to smell again. The method is called the Nasal Airflow Inducing Maneuver or
Polite Yawning Technique. Research of the technique has shown that quite a high
percentage (89%) of the participating laryngectomees were able to learn to use
the technique in one therapy session. An evaluation after 6 weeks showed that
46% of the laryngectomees that could not smell had mastered the technique and
now were able to smell again. A long-term evaluation showed that not all
laryngectomees were able to carry out the maneuver correctly even after a longer
period of time. The results of further investigations suggest that initial
intensive training and using a water manometer (see Figure 3) for biofeedback,
improves the results and increases the number of laryngectomees that are able to
successfully use the technique. As with many things, practice is the word!!
Polite yawning technique
The name of the technique
already indicates the core of this method: it looks like polite yawning. By
making a movement that is similar to yawning with closed lips, the oral cavity
is enlarged and the vacuum that is created causes air to flow into the nose.
This airflow reaches the olfactory organ and you can smell!
The pictures in Figure 4
and 5 show you how to make the movement. These are the key points:
Close your lips (and keep
Hold your tongue against the roof of your mouth
In one movement, simultaneously lower your jaw, floor of mouth and tongue
Repeat the movement
It is important not to
breathe in too heavily simultaneously with performing the movement. Many
laryngectomees initially do breathe in during the movement simply because they
are used to taking a breath when trying to smell something. It is not necessary
at all and can make you dizzy.
Refined polite yawning
Some laryngectomees are
able to learn to make the movement somewhat smaller, which is usually
appreciated because it makes the movement less visible. In general, it is
advised to start with the regular polite yawning at first, to develop a good
feel for the movement. As a second step one can try to use an isolated pumping
movement of the back of the tongue and the floor of the mouth and eliminate the
downward movement of the jaw (this looks like the movement frogs and turtles
make with their floor of mouth!). The key points for this movement:
Close the lips (and keep
Hold your tongue against the roof of your mouth
Stabilize the tip of your tongue against your teeth or against the ridge on your
palate right behind your upper teeth
Move the back of the tongue downwards (compare with tongue clacking)
Repeat the movement
Water manometer for visual
As mentioned earlier, we
have found that the use of a water manometer (see Figure 3) has been very
helpful to see the immediate results of the movement (the water will move
towards your nose if you are carrying out the movement correctly). It will also
help you to improve the movement, to make it smaller and more efficient. The
manometer that you see in the picture may be hard to make, but you can simply
make one yourself by taping a plastic tube onto a piece of cardboard in a
The results of the research
and the development of the technique were the result of teamwork and I did not
want to write this article without acknowledging my colleagues who all played an
active role in this project: Prof. Dr. Frans JM Hilgers, Prof. Dr. Frits van
Dam, and Rianne Polak. This project has been a lot of fun and we have enjoyed
working on it. We hope you will enjoy regaining your sense of smell!
A part of this project was
funded by the Dutch Cancer Society and they enabled us to write a manual about
this technique in Dutch. This manual has now been translated into English and we
have made a CD-ROM containing the manual and many other documents and video
clips. This CD-ROM may help you in learning to smell again and may help your
Speech Language Pathologist in understanding the technique and training you.
The CD-ROM is titled
?Olfaction regained, using the Polite Yawning Technique? (ISBN 90-75575-07-6,
Editor: Frans JM Hilgers). Atos Medical has been kind enough to distribute this
CD-ROM for us and help us reach our goal in making this method available to many
laryngectomees around the world. The CD-ROM is free and you can obtain a copy by
sending an e-mail or give a phone call to Brenda Martin (Brenda.Martin@atosmedical.com,
2005 Casey-Cooper Award Nominations
The nominating period for this year's award, which will be presented at our
annual banquet during the IAL meetings in Boston in September 2005, is now
open. A full description of the award and the procedures involved can
be found on our web site at:
The Casey-Cooper award shall be presented to the WW member who has been
chosen by the Awards Committee. Nominations will be from the
membership who will be asked by the Committee Chairman to write an Email
with their nomination and send it to the Awards Committee. This nomination
must include detailed information as to why this WW member should be
considered for this award. To be considered by the Awards Committee, a
member might have performed such services as work for WebWhispers or for
other larynx cancer patients, assistance to other support groups, providing
help to individuals through visitations, educating children through speaking
engagements at schools, volunteerism to the ACS, the IAL, or to other
national or international organizations or other services to the community.
Therefore, if you know of a WebWhispers member who might be deserving of
such recognition, please send nominating Email to this year's Chairman,
Dutch Helms, at: FantumTwo@aol.com,
who will then share it with the other members of the committee - Pat Sanders, Mary
Jane Renner, and Herb Simon. The nominating period will remain open
until the 1st of June 2005 ... but don't procrastinate ... if you have
someone in mind, let the committee know now ... you can always add to your "nominating
information" later, if necessary.
Thanks sincerely for your interest
Contribution from a Member
My Dream is Realized!!
Talking Hands Free with the B-M Button
by Maggie H. Geehan
My name is Maggie, sixty-one years young, a
laryngectomee, and I live in Florida. One of my goals as a lary was to be able
to talk hands free using the Barton Mayo Button. I had two main challenges
preventing me from reaching my goal: my stoma did not have a ridge all the way
around to hold the button in and my stoma was too big. This is my story of how
M.D. Anderson Cancer Center (MDACC) in Houston, Texas made my dream come true as
they performed reconstructive plastic surgery on my stoma and then made a
customized B-M Button to fit my ?new? stoma. What I am sharing worked for me but
that is not a guarantee that it will work for everyone. Each of us has different
challenges and each requires different solutions
I had my laryngectomy April 18, 2001. I was blessed
with the gift of being able to have a TEP. For the next year, I used my thumb to
occlude my stoma to talk. After many months of trying different glues and discs
so I could talk hands free, my SLP and I finally found a system that worked, but
only for several hours. So I would spend one and a half hours every morning
cleaning, prepping, and gluing a disc with other self adaptations to keep the
disc from leaking. Within several hours, the disc always leaked and I would have
to use my finger to cover the leak. Some days, I would go through three discs.
While this was better then always occluding with my thumb to talk, it still
wasn?t where I wanted to be.
In July of 2002, my SLP tried the B-M Button but it
would not stay in place. She informed me that she was sorry but there was
nothing else she could do to help me. Then, a few months later, I went to the
Florida Laryngectomee Association Convention in Daytona Beach and Nancy Blair,
SLP, tried some of the larger Buttons and they wouldn?t stay in either. She told
me that maybe MDACC could help me. So, Nancy and I both contacted them and I
went to MDACC in March, 2003, where I saw Julie Bishop-Leone, SLP, and Dr. Jan
Lewin (in charge of Speech Dept). Julie and Dr. Lewin agreed that my stoma did
not have a ridge all the way around. Next was Dr. Reece, Plastic Surgeon, who
had two questions to ask me before he would even consider doing surgery. One -
Did I still smoke cigarettes? No, I had stopped smoking. Then he wanted to know
if I had any radiation. No. He said ok, that if I had been treated with
radiation that he would have to make sure that my skin would be able to respond
in a positive manner to reconstructive surgery. So, now I had to see Dr. Lemon,
an Oncologic Prosthodontics in the Head and Neck Dept. Dr. Lemon said that he would be
willing to try to make a customized B-M Button for me if the stoma surgery was
successful. Any adventure or journey takes time and patience :-)
I saw Dr. Reece again and he wanted to be sure that I
was physically ok to undergo surgery. Not an easy question to answer when you
have a medical history like I have, which includes a history of tuberculosis,
brain aneurysm surgery and an inoperable brain aneurysm, silent heart attack,
history of strokes, seizures, and more. So, Dr. Reece ordered many tests,
including heart stamina. What this meant was that I had to go back to Texas one
more time before we could schedule the surgery. One of the tests was to have a
psychiatric evaluation because I had attempted suicide when I was in my twenties
(severe PMS). Dr. Rickman, who did the psychiatric evaluation, decided that
there was a very slight chance that I might be ?normal? :-)? So, I passed all my
tests. It was now July, 2003 and Dr. Reece scheduled my surgery.
The surgery would involve making a two inch incision
just above my right knee and removing a twelve inch tendon. He made an incision
at three, six, nine and twelve o?clock of my stoma. He then inserted the tendon
around the inside of my stoma, pulled it like a draw string and sewed it to my
breast bone right there below the stoma. I did not have any pain in or around my
stoma after my surgery. I spent the night in the hospital and then went back
to the hotel, remaining in Houston for the next three weeks.
My recovery went very well. Dr. Reece removed the rest
of the stitches ten days after the surgery. During this time, I used an
electrolarynx to talk. Several weeks later when everything was healed, I went
back to using the glue and disc so I could talk hands free again. When I first
started to walk after the surgery, my right leg felt a little bit weird. Not
painful. Just wobbly. Three days after the surgery, I was back to walking my
three and a half miles in one hour each day for exercise. Three weeks after the
surgery, Julie tried a regular B-M Button. It would stay in for almost two hours
and then pop out. So, Julie, Dr. Lewin and Dr. Lemon measured my stoma to make a
customized button. Then I went back home to Florida.
Four months later, December 2003, I received my
customized B-M Button and I wore it for two hours the first day, then up to
three hours the next day. It wasn?t working and was popping out. I cried. It had
now been a year since I first contacted MDACC and maybe this wasn?t going to
work after all. I called Julie and told her what was happening, that the top
part of the button was pulling out. It seemed to be too long at the top. Julie
is a beautiful and loving person, who was going out on a maternity leave, so we
set up an appointment for me to see Jodi in February, 2004. I was so frustrated
and was determined that I was not going back to using glue. So, I asked Spirit
to help me figure out a way to keep the button in. With Spirit?s guidance, I was
able to make, what I call ?Maggie?s B-M Button Attachment (see photo at right). It was
not perfect but it worked for me and I did not return to using glue and discs.
So, I went back to MDACC in February and saw Jodi and
Dr. Lewin, then, Dr. Reece, who said he knew what happened. The bottom part of
my stoma recessed and he thought he might be able to fix it. Would I be willing
to undergo surgery again. Spirit was with me and I knew in my heart that it was
ok to go forward with the surgery. So, Dr. Reece then reopened my stoma at the
bottom and split the tendon in half from both sides and brought the halves
together to form a completed circle at the bottom of my stoma. He still kept the
other half of the tendon on the breast bone.
I stayed in the hospital overnight and returned to the
hotel for ten days since MDACC usually wants patients from out of state to remain
in the area for a while after surgery. I had a little trouble with one of the
stitches but the antibiotics took care of it so it did not get infected. Also, I
did not have any pain with this surgery. I had to use the electric larynx during
the recovery which was two to three weeks.
In April, 2004, I went back to MDACC and saw Julie,
Drs. Lewin and Lemon who measured me for a new customized B-M Button. I also saw
Dr. Reece. We were all so pleased with how my stoma looked: smaller, nice and
round, and with a beautiful ridge all the way around. Two months later, I
received that new customized button Drs. Lewin and Lemon made to fit my new
stoma. A picture of it is on the left. Here are the notes I wrote
about wearing it, which I gave to MDACC:
?Had been using first customized b-m button with Maggie?s b-m button
attachment since February, 2004. Received new customized button on June 19,
2004. - wore new button for four hours. Leaked a little at bottom. Did not pop
out. Cleaned stoma and put old button back in so I can use filter during the
night. While wearing, button is ?pinching? a nerve at top of reconstructive
surgery scar sending stinging, painful zings up the left side of my neck. Also
button ?pinching? a nerve at the bottom part of reconstructive surgery sending
painful, stinging zings down left side of chest bone and over the ribs and into
the left shoulder. The stinging pains calm down after about an hour. The one in
the neck kicks up off an on. I also have a zinger from my original laryngectomy
surgery which is on the top of the scar on the right side of my neck. So, I am
used to zingers.
June 20th - wore new button for eight hours with foam piece at inside of bottom
of button. Did not leak and did not pop out. Still experiencing the zingers. Got
three cuts inside stoma from new button. Put old button back in for night.
June 21st - wore button for twelve hours with foam piece at inside of bottom of
button. Did not leak or pop out. Cuts in stoma little deeper; neck red on
outside approximately one inch around stoma.
June 22nd - wore new button for fourteen hours(all day). Still having zingers.
Good changes in stoma: Starting to heal and button is not leaking anymore. I
now have a great seal. The red area has not expanded. Old button for the night.
June 23rd - wore new button for fourteen hours. No leaks and no popping out!!!
Still having zingers but I am used them by now. Changed my stoma care: I
decided to leave the old button out for the night to see if my cuts would heal
quicker. Not a good move. The next morning, my stoma had shrunk to fifty percent
of it?s usual size and was almost closed with mucus and some blood. I cleaned my
stoma as usual. The cuts are still deep but no infection. They are healing and
I now see lumps and indents with a white coating that I call ?Button Calluses?.
Not as much bleeding. I had a couple of ?Button Calluses? after using my first
customized button so I knew it was ok.
June 24th - wore new button all day; no leaks or pop outs; still having zingers.
Red area on neck not expanding. Cuts inside healing slowly. Button calluses
looking ok. At night, left out old button for night and again this was not a
good idea as my stoma shrunk and was clogged with mucus and a little blood.
June 25th - June 30th - Wore button all day. Redness in neck slowly went away.
Cuts in stoma slowly healed. Button calluses doing well. No leaks and no popping
out. At night, I cleaned as usual and put in old button which was hitting the
inside of my stoma in a different place than the new one which meant that I was
not pressing the cuts inside my stoma during the night.
July 1, to present, July 20, 2004: No redness in neck. No cuts in stoma. Button
calluses working well. Now that everything is healed I can see new ridge from
second surgery which is making the great seal at the bottom as well as the new
customized button with the oval shape is completing the ability to have a great
seal. Thanks to each of you for helping me get my miracle. I can now talk hands
free, glue free, disk free and Maggie?s b-m button attachment free. What a
blessing!! Thanks. Dr. Reece: There is a stitch in the surgery you just did at
the bottom of the stoma that has come up twice. It is not infected. It is
similar to the stitch that was in my leg that kept coming up and opening and
healing and then opening again. It just opened up last week and looks normal
again. When I see you in September, you can check it for me and let me know if
we can let it do it?s own thing or if you need to do anything.?
I went back to MDACC in September, 2004 for a
follow up visit. We are all so pleased with my miracle. I have included a copy
of a thank you card that I made for MDACC folks.
It is now February, 2005 and I only have one zinger
sometimes at the bottom scar of the stoma when I press on it. There are no cuts
and no problems at all wearing the button. I still wear my old customized button
to bed to hold a filter during the night and since it is smaller in size, it
lets my stoma shrink a little during the night so the new button continues to
fit tightly everyday.
Financial aspects of my journey: I am on Social
Security Disability due to neurological damages I received in a car accident in
1984 so I do not get much monthly income. I am also on Medicare and Medicaid. I
went to MDACC in Texas from Florida six times in a year and half. I stayed in a
hotel room for a total of two and half months. Medicare paid for eighty percent
of all medical bills. Florida Medicaid would not pay for the remaining bills
because the services received were out of state. I made arrangements with MDACC
to pay for the remaining medical bills. It will take me another five years to
pay off my bill in full. A small price to pay for the miracle I have of being
able to talk hands free using the B-M Button.
Social Services: When you make your appointment to see
Julie at MDACC, she can give you the phone number and individual to contact at
Social Services. They can help you with information on assistance with air
flights, hotels and other necessities. They were very helpful to me. Air
Flights: I flew to MDACC via Angel Life. Their phone number is 1-877-247-5433.
This number covers the southeast USA but they can direct you to the proper
number. This agency provides air transportation free of charge if you meet
their criteria. The pilots offer their planes and their time free to those who
qualify. I qualified because of my low income. I was a cancer patient
undergoing rehab and both my doctor and social worker from Welfare filled out
forms stating my needs. I used Angel Life just once because the next time I was
going to MDACC, the weather was not good for small planes. So, instead of
canceling my appointments, my friend and angel, Laura paid for me to take
Continental Airlines. Continental Airlines has a good agreement with MDACC with
lower fares and you can change your dates if needed because your appointments
got changed. You can do this without paying a service fee for the change.
Hotels: If money is not an issue for you, the Jesse H. Jones Rotary House is an
excellent place to stay. It is directly across from MDACC. MDACC Social
Services were able to help me stay at the Surrey House for a while because of my
low income. Then, the Surrey House helped my friend and angel, Laura pay for the
remainder of hotel stays at a very reasonable rate. The Surrey House is not a
plush place but it is clean. It also has a table, refrigerator, and microwave,.
There is a Super-Target right across the street where I could use my Food Stamps
to get my food at very low cost. That way, I did not have to eat out. Also the
folks there were very helpful to me when I first got out of the hospital. They
knew I was alone in my room so, if they got a call from my room but didn?t hear
anything, they would call 911 and send someone down to my room to help me. Not
all hotels would do that.
So, I was able to receive my miracle through the help
of Medicare, MDACC Social Services, Surrey House, Angel Life, my friend and
angel Laura, who helped me so much, and my monthly payments. I did everything
to keep the costs as low as possible.
Julie has given me permission to give out her
information. If you are having difficulty using a B-M Button to talk hands free,
you can contact Julie. And, please remember that there are NO GUARANTEES that
the procedures and customized B-M Button will work for you. MDACC will do their
best but each of us has different challenges which require different solutions.
Thanks for listening and contact me if you have any questions or comments. I
have now been able to wear a B-M Button and talk hands free everyday for an
average of fifteen hours a day for the past eight months.
Do everything you can to reach your dream!
Yep, it?s me :-) Maggie from Florida, Email:
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:
Maggie's Thank You Card
the Lary Lifestyle
Joan G. Burnside, M.A.
Welcome to my second list of tips for new
larys. Please check the March, 2005, Whispers on the Web
for the Introduction to this series and Chapter One.
Ten more tips
When you get into a tight place and everything goes against you
til it seems as though you could not hold on a minute longer,
never give up then, for that is just the place and time
that the tide will turn.
Harriet Beecher Stowe
TIP # 11: KEEP YOUR YEAST FROM
(for TEP users who are bothered by yeast problems)
Yeast starts in your mouth and travels down the pharynx where it will sneak into
your prosthesis, sticking so well that it may disable your prosthesis. Many
Larys swish and swallow Nystatin, a prescription medicine two to four times a
day. Some dip their prosthesis brushes into Nystatin and slide it into the
prosthesis from the front. Peroxide is cheap and may help if used the same way
but it foams annoyingly. A brush used daily, even with plain water, will keep
the inside of the prosthesis clean. Other medications are the Diflucan in pill
form and Mycelex as a troche.
Another Lary says he got the following idea from a speech-language pathologist
(SLP) whose clients couldn't afford medications. Ready? Swish and swallow A-1
Steak Sauce! (I think I would rather drown the steak in it, chew a long time
and then swallow.)
JB's note: I recently tried another approach, advised by an SLP, directly
injecting Nystatin into the prosthesis with a syringe. Unfortunately I think I
lost some of it in my airway and coughed much of the night.
TIP # 12: SHAMPOO WITHOUT FEAR
More than one Lary has been terrified of showering and shampooing, but there are
ways to do it. For example, you can use a commercial shower guard which is a
plastic deflector that you wear around your neck. Some people just wear their
regular HME in the baseplate and say it will deflect the water unless you allow
the shower to spray directly onto it. Another simple idea is to bite down on one
side of a washcloth and let it hang down while you bend forward under the shower
spray. The cloth captures the runoff, keeping it away from your stoma on its
way to the drain. Memorably, other Larys have pointed out that you probably
won't drown in the shower if you get a little water down your stoma, but you
will have a mighty cough!
TIP # 13 HUMIDIFY YOUR CAR
Gagging and coughing can be dangerous whether you're behind the wheel or a
passenger. You can easily find a car humidifier on the Internet, but there are
creative methods, too. For example, direct the heat or air conditioner vents
downward so the airflow will blow over a pan of water on the floor. You can use
that same pan of water to periodically wet a washcloth which you then hold
loosely over your stoma cover. Wet towels draped over the empty seats will work
JB's note: At first I had to ride with the A/C or heater turned off. As I got
better, and humidified better, too, I could go farther without a coughing fit.
When I got to the point where I could ride a couple of miles without coughing,
I started to drive again, but only on roads where I could pull over easily. It
got better and better from there.
TIP # 14: LOCATE YOUR LOST ELECTROLARYNX:
Put a phone number on your EL, preferably one which will be answered by a
relative or friend who can follow through or one connected to an answering
machine. If you tape the number on, pay close attention to the placement, so it
doesn't interfere with the charger or battery. If you have a household
engraver, you've probably already used it. Or visit your jeweler and have it
engraved. Happy hunting!
TIP # 15: DRY UP YOUR FOAMING MOUTH
Try swishing and swallowing bottled club soda or rinse with water and baking
soda or lemon. Brushing your teeth often with baking soda may help. Keep
trying different substances to find what might help, even if only for a short
time. There appear to be no really handy hints for foaming or excess saliva
caused by radiation, and the medical people do not seem very concerned about it.
JB's note: My local internist had worked in a cancer clinic at one time, and
she told me the foaming would eventually just stop. In the meantime I was
advised to continue carrying my cup and tissue. It did stop, although once in
awhile I am revisited. Drinking a cup of black coffee seems to help now.
Interestingly, the reading I had done prepared me for dry mouth after radiation,
but I have never seen a question about dry mouth on WebWhispers. I have seen a
number of questions about excessive foaming.
TIP # 16: AVOID DUST LIKE THE PLAGUE
If you find yourself in a construction zone on the freeway, or you simply must
vacuum the living room, then super-humidify your stoma with a saline bullet,
spray water on your stoma cover, or cover your HME with a wet washcloth. Think
twice about common chores like shaking throw rugs or sanding a cabinet.
Preferably, let someone else do it, don't do it all, or develop another method
that doesn't put dust in the air.
JB's note: While baking cookies for my mother and her friends at assisted
living, I unfortunately used a recipe that called for sifting the flour. I
threw the sifter out after that experience, in case I should ever forget.
TIP # 17: SMELL YOUR FOOD AGAIN
Lean over the steam rising from the food, waft it toward your open mouth and
pant. At first it will seem very faint, but still a real smell again. It's
good for your appetite, and the steam could help moisturize your stoma, too.
JB's note: The first time I really started cooking from scratch, the smell was
a revelation. I had thought I'd never smell again, so I really appreciated how
this most basic sense enhances one's life.
TIP # 18: GET A MIRROR THAT REALLY MAGNIFIES:
At first you'll probably get along with a drugstore makeup mirror, but once you
have a prosthesis, you'll need a 7X or higher magnifying mirror with a light.
Suddenly, you'll know what you're doing because you can see what you're doing.
JB's note: This came to me on my first post-laryngectomy trip, when the hotel
in Biloxi provided a fabulous, high-powered, swing-out mirror. As soon as I got
home I went to my local bed and bath store where I was stunned by the variety of
mirrors I could pay a lot of money for.
TIP # 19: EXPECT EVERYTHING TO TAKE LONGER
Your doctors and SLPs can give you only estimates. Recovery from a laryngectomy
and the related cancer treatments is very complex and individual. People
writing to Web Whispers often say "Measure your recovery in months and years."
If something does happen faster, you can really celebrate! If you keep a book
or journal, you'll be able to track tiny bits of progress by the days and
weeks. Reading these progress notes is very encouraging and helps you get to
the next step.
JB's note: A "laringectomizado" writing from his website in Spain, describes
his progress as "poco a poco," which I think is much more descriptive and fun
than "little by little."
TIP # 20: EAT FIRST, TALK LATER
Dinner table conversation is one of the most satisfying human social
activities, but impossible for many of us. Many Larys simply don't talk at
meals until they are totally finished. Gradually you may be able to know if
your pharynx is clear enough that your prosthesis won't clog with food, and you
can intersperse eating with talking. If you have learned to speak with an
you can talk during dinner.
JB's note: Now that I can speak at least part of the time during dinner, I carry
a pad and pencil so I can carry on if I get stuck. My brother-in-law even sets
out a clipboard and pencil for me. He really likes to discuss current events!
Now is a good time to rest
and reflect on this second group of tips. I hope you're marking up the pages
with your notes. Any questions for the doctor or SLP? Have you signed up for
WebWhispers? Are you trying to get over something? Anything you're going to
try? Write or draw it in your notepad.
FRIENDS Donna McGary
"That which does not kill us makes us stronger"
The Canary in the Coal Mine
My Journal - May 15, 2000
"The Big C" as they used to call it still conjures up powerful images
and responses in our culture. Tell the people you love who love you that you
have cancer and watch as all their fears, guilt, anger, and defensiveness
erupt. Not at you directly, although the results can be disconcerting. What do
you say to a distraught loved one who responds to your loving embrace,
accompanied by the requisite "I'm OK", which you are trying really hard to hold
on to at that moment, by sobbing, "I know, but I'm not". It's very odd, but
sometimes it is easier to be sick than to be healthy watching someone be sick.
Which brings us to another point, it's also very weird to be seriously sick and
not look it. Other people are very uncomfortable with that, because if you look
well and aren't, then maybe they aren't either. I am not being cynical or
critical. It is very difficult to accept that one could look healthy and be
sick. It makes us all fearful and painfully aware of the absolute randomness of
the most serious afflictions?there but the grace of god go I, resonates even for
confirmed agnostics and, I suspect, even for atheists who must sometimes
confront their mortality with just a little question mark. When you tell
people that you have cancer, they go home that night and pay a little more
attention to their families. They hold their loved ones a little tighter; they
call estranged lovers with more forgiveness than they previously thought
possible and they vow to be more humane and appreciative. You become the
sacrificial scapegoat within your small world that reminds all the people you
love who love you that life is short and infinitely sweet and unpredictable and
that they must treasure every uneven moment of it. You find yourself bathed in
their loving support even as you try to protect them. Your world is so separate
from theirs as you trudge alone from one wing to another of all the world's
great medical institutions clutching your x-rayed, CT-scanned, MRIed, scoped,
poked, prodded, scraped and otherwise subjected to invasions, humbled body?it is
a very lonely trudge. And in truth, it is much more of a trudge than anything
so noble as a journey. There is nothing romantic about this, my latest
adventure. I don't want to be point person for my peers' complacency about
life. I want my own complacency back. I don't want to be your heroic reminder
of the fragility of life.
I labor under the imperative to write, re-write and
re-re-write again. However, for this column, I have resisted the impulse?at
least when it comes to my original journal entries. The reason is simple- when
"it" first happens to us, we are in a state of shock. Sometimes we are aware of
this- sometimes not. I thought I was fine. But late at night, alone, when the
"muse" came calling, amazing things happened. I wrote things I didn't know I
was feeling. Those things are my journal entries. I read them now and I am
surprised by my rawness. It is like I was skinned alive and didn't know it. And
I have heard from a number of you that it resonates. So I am not re-writing
those first entries. But I will offer this caveat- that was then -this is now.
It does get better. But it can be an imperceptibly slow process and one that is
defined by some odd markers. Not just the expected signs that your life goes
on, like anniversary dates of your surgery/treatments or routine CT scans that
come up clean, but other more subtle signs. Like when you first meet someone
and during introductions you wonder if you have spinach in your teeth, until you
realize its not your teeth, but your "distinctive voice" that has them caught
them off-guard. Or when, after a program during which you & several others
spoke, attendees tell you they could hear and understand you best, because you
enunciate and speak slowly and deliberately. Or when you stop being afraid of
the telephone (I still have trouble with that one!). Or, maybe when you start
wondering, "What's the big deal?" when people say how amazing you are and what a
remarkable recovery and adjustment you have made. But then you think back to
when you felt just like these journal entries?and you know what they say is
true, "You've come a long way, baby".
"Sometimes the light's all shinin' on me,
other times I can barely see,
lately it occurs to me,
what a long, strange trip it's been."
Bits, Buts, & Bytes
HEY BABY, WHAT'S YOUR NAME?
The Baby Name Wizard is an interactive visualization of baby name choices.
Type in a name, letter by letter, and you'll see popularity trends rise and
fall over the past century. Turns out that "David" peaked in the 1960's, and
some of the hottest names now are Emily, Hannah, Jacob and Michael. Check it
out here: http://babynamewizard.com
NEWS FLASH: YELLOW PAGES NO LONGER YELLOW
Amazon's new A9 search engine has an amazing new feature that brings the
yellow pages into living color, and lets your fingers actually do some
walking... right down the street and into the front door of that pizza place
you were looking for.
Search the Yellow Pages at A9.com and you'll find the usual search results,
such as address & telephone, PLUS images of the storefronts of all the
buildings on the block. This Block View technology makes it easy to observe
the parking situation, the neighborhood, and check out other nearby
When launched a few weeks ago, the A9 Yellow Pages included 20 million photos
of the downtown areas of 10 major U.S. cities including Atlanta, Boston,
Chicago, Dallas/Ft. Worth, Denver, Los Angeles, New York City, Portland (OR),
San Francisco, Seattle, and others. Business owners can add their own
photos, store hours, menus and more for free. More than 14 million businesses
are currently listed. Try it out here:
I chose New York, NY then popped into Lombardi's Pizza and found that there's
a lovely park just a few doors down the street.
ListServ "Flame Warriors"
Terms of Importance
1. n. A hostile, often unprovoked, message directed at a participant of an
The content of the message typically disparages the intelligence, sanity,
or ancestry of the recipient.
2. v. The act of sending a hostile message on the internet.
1. n. One who actively flames, or willingly participates in a flame war ...
(Another Example Below) ...
Target is the guy everyone in a
forum loves to hate. He brings this
upon himself; he may be a known cheater in a game forum, a
conservative among liberals, a Windows guy among Mac enthusiasts,
or even a man in a women's forum. Why Target places himself in
such dicey situations is anyone's guess, but he seems genuinely
oblivious to the danger. When Warriors unleash their collective
fury upon him his usual reaction is "Hey, what did I do?" or "Why
do you all hate me?" Target eventually gets the hint after a while
and moves on. NOTE: Target often serves as a useful pressure valve
for the forum's pent up hostilities. Therefore, if the current Target
has been driven off or immobilized a new target will be quickly
Above courtesy of Mike Reed
See more of his work at:
Welcome To Our New Members:
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
Take care and stay well!
Murray Allan, WW President
We welcome the 25 new members who joined us during
East Hartford, CT
Durban, South Africa
Bobbijo Cook - Caregiver
Joe Hunter - Larynx Cancer Patient
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Bayamon, Puerto Rico
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Pinellas Park, FL
North Fort Myers, FL
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Lake Elmo, MN
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Hobe Sound, FL
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Mary Vargo - SLP
North Chelmsford, MA
WebWhispers is an Internet-based laryngectomee support group.
It is a member of the International Association of Laryngectomees.
The current officers are:
Pat Sanders............V.P.-Web Information
Terry Duga.........V.P.-Finance and Admin.
Libby Fitzgerald.....V.P.-Member Services
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
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The information offered via the WebWhispers Nu-Voice Club and in
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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.
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WebWhispers Nu-Voice Club
is eligible to receive tax-deductible contributions in accordance with IRS
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