Whispers on the Web - October 2004

Since our archives for the WebWhispers list is saved for only a year, we lose being able to refer back to discussions threads that are very informative. Here is one that took place back in October, 2002. It started under one title and continued under another but you can read it straight through here.

A WW Discussion Thread on Oral Cancers

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     Just had a phone call from a friend whose husband turned up with a little blood in his mouth in the morning for several days, and then noticed a lump in his throat. His pcp referred him to someone at a local hospital who did a CT scan and said "it is a growth at the base of the tongue and if it is cancer it would be inoperable, so we'll do a biopsy next week and then meet a week after that to start treatments." They were, of course, panicky with such a negative prognosis before it was even biopsied. They further came away with the idea that if they did radiation there could never be any surgery. And felt that they weren't even going to have a say about what treatment they would have done, if it malignant.
     They feel a lot better now having talked with us, but I wondered if anyone else was hit with something like this in the beginning. (I do believe, however, that if an ENT sees something he "thinks" is cancer, it usually is) I guess it is a fast growing thing, which Bob's wasn't, but "inoperable"? Come on! They are now going to call one of Bob's surgeons at MEEI to set up a date hopefully for him to do the biopsy and take over. Just wondered if anyone had a "base of the tongue" problem and what you went thru before landing on WebWhispers. They need all the survivor information they can get at this point.
Thanks
Barb Stratton
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     I had a my vocal chords removed and a right neck dissection. they also took half my tongue..... ouch..... some folks have there tongue remove all together..... I think Dr. Singer or Haymaker have done reconstruction to build a new tongue. Having even part of your tongue removed makes it very difficult to talk.... but you can.
later, Rich
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     Also my soft palette was removed. I haven't been able to use any of the speaking aid device effective enough so people can understand me. It has now been over 5 years, with pen and paper. Peace V
Mark
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     I had part of my tongue removed as well as my soft palate, and found that the lack of a soft palate had a far greater negative impact on intelligibility: the harshly nasal sound produced in the absence of the soft palate totally overwhelms everything else and destroys intelligibility. I was able to be fitted with an obturator - essentially an upper denture-like device with a plastic plug that extends back into the throat and closes the gap where the soft palate was - and it made a world of difference. It takes a bit of searching to find someone who can construct one, or even knows what it is, but the results are well worth the effort.
Tom Harley
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Hi Tom,
     I had one for a while, in fact I think I still have it some where, but with all the radiation I had, my mouth kept changing and it wasn't working properly. Plus I can only open my mouth about a 1/2 inch and when I could manage to get it in, it hurt like hell. I might have tried to keep having them fine tune it, but my insurance was not covering it at the time, the doctor was 3 hours from my home and I couldn't drive out of town alone. Then my wife was working part time and going out of town to college, and I was staying home, taking care of the house, watching out 3 kids, ages 3, 9,12.
     Now I'm getting all of my treatment at the VA and can drive again, maybe they will want to try fixing up my mouth again, or at least I'm hoping for some help with getting a lightwriter. All the years of surgery's, chemo, radiation, other treatments, and all the trips to different hospitals and clinics got to me and I don't know how much of that I am willing to go through again. I guess time will tell. I'm going to be 53 the end of this month and I kind of feel like I should be 73. Thanks Tom for you input. God Bless. Peace V
Mark
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Hi Mark,
     I know what you mean, you get to a point where you have to balance the pros and cons, and then maybe decide that enough is enough, or at least that it's time to step back for a bit and take a break; there are worse things than being mute, and it sounds as if you managed pretty well. I had my one successful obturator made after my first cancer of the throat when I was relatively young, before I got the unrelated laryngeal cancer 10 or so years later. It seems like the making is an art rather than a science, the doctor who made it was a faci-maxillary something or other (long title), and he was associated with a large teaching hospital; which is no guarantee, I spent six months commuting back and forth from world-renowned Sloane-Kettering hospital in New York City and ended up with a piece of junk; which is not to denigrate Sloane-Kettering, I'm sure it's a fine hospital, it was the luck of the draw, or timing or something else. So it's a matter of luck and/or persistence; maybe if you get your second wind or just happen to run into someone, or hear about someone who knows someone, etc., ; sometimes life works out that way. In any case, the best of luck whatever you decide, and keep contributing to the group, we're all in this together. By the way, I also had part of my jaw removed along with the soft palate and part of my tongue, and could barely open my mouth post-op. They gave me this little plastic stubby screw (pink) about 2 inches long with a tab on the end that I was to use every day, the idea being that you literally screw/jack your mouth open; my first impression was that is was a medieval instrument of torture, that it was some kind of cruel joke, but it made surprisingly good sense. I'm not really sure how much it helped, but such was the state of technology in 1987. Again, good luck and best regards,
Tom Harley
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     ----the doctor who made it was a faci-maxillary something or other (long title),
The miracle workers are maxillo-facial prosthodontists. Dr. James Nethery, my dental oncologist, was also a maxillo-facial prosthodontist. He made a palate for a woman who had lost hers to cancer, and she immediately went from unintelligible to speaking clearly with just a slight nasal twang, and she was unbelievably pleased. I met her months later at a movie theater, and she told me that if it hadn't been for Dr. Nethery, she probably wouldn't be there, or out in public at all. Those people can do wonders for a patient's quality of life.
---Ron
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     Thank you for your response. I have my tongue and soft palate and know little of restorative efforts. It is just such a gift--to have members with this information to share and educate. Janna
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We agree with Janna. Having members and friends to write and share with each other is a gift we give and a gift we receive just being part of the WebWhispers list. (Editors)

Some Comments about a Long Storm

I am one of the lucky ones who didn't get hurt or lose friends or pets or houses or cars and do not presume to understand the horror and hurt others have gone through.

Roger Jordan writes about leaving Biloxi and going to Chattanooga but Ivan followed. How do you get away from a storm the size of Texas that is relentless in it's march through one state after another, spinning off tornados from it's edges and keeping it's strength long after it should have settled down to just a bad storm. It was windy and wet everywhere. Scary with the wind gusts and the trees swirling. A friend had a neighbor's tree to come down on her house and has been told they don't know when the insurance company can send someone because of all the calls. I imagine the roofers and all other workmen will be the same. And, the damage in this area was nothing compared to other areas.

Judy Ramboldt was going to write something about living through the storms and here is she emailed about that: "Too many of our friends had bad luck with Ivan. I was going to sort of put a fun-exciting spin on the article. Cannot do that now. I do have a silly observation about being without power for a lot of days. If anyone makes an artificial arrangement to be hung over the bed, take care. I created a marvelous arrangement to be above our new bed with its new headboard. I used sprayed eucalyptus as the base of the arrangement. But.......the green eucalyptus does not like hot weather. What happened was that the leaves started to weep with green color. I now have to repaint the wall to cover the green streaks on my white walls."

Even those who came through these storms without damage to self and property still have "green streaked" walls, gutters overflowing, unbelievable trash down in their yards, leaks they didn't have before, water damage, stopped up plumbing, power losses, freezers and refrigerators to be cleaned out, streets flooded and closed, contaminated water in some areas. Preparations of bringing in lawn furniture, plants and anything that might cause problems outside now all have to be moved back.

I feel like I have been running a marathon. When I gave up on power and decided to go stay with a friend who lived nearby, I had to pack a small bag, close down the house, get someone to open my garage door because without power, I cannot lift it, and drive carefully to my friend's. Traffic lights were not working. (I saw more courteous drivers than I have seen in years!) and stores along the way were closed. My power came back on later that night and the following day, I had company who didn't have power at their home. We take help when we need it and give it when we can.

The problem with power outages is so many things don't work that we normally take for granted. A sort of funny one...some people are so used to their portable telephones that need electricity that they had to be reminded that a wired telephone would still work on their lines. What? A telephone that you have to go to when it rings, one that doesn't walk with you all over the house.

Those of us who were inconvenienced are so fortunate that all we lost is the cost in time, money and labor to do a clean up. Maybe sometime we can write up suggestions about items that we, as laryngectomees, might have in our supplies and medicine chests to make life easier for us in times of power outage, contaminated water, and when stores are closed.

In the meantime, we'll remember the folks who had losses that cannot ever be replaced.

Campfire Philosophy
by WW Member Paul Galioni

Inside - Outside

A very good friend, since childhood, once said to someone in high school so very many years ago, "How DARE you judge my inside by my outside?"

Over the years I have learned what he meant. I knew about his crazy mother who would flip out at any moment and suddenly we couldn't spend the night - let alone go over there. One day there was going to be a party and my friend and his sister (my girl friend at the time) and I were going to be getting the front room and living room ready.

Now this was a Victorian house that was built by one of the first judges to sit on the California Supreme Court - and he built his home on a hill so that it would overlook both the gold domed county courthouse in Auburn with Lady Justice holding a gold leaf scale, but would also allow him to see the glowing golden dome of the State Capital in Sacramento as the morning sun caught it and it burst into golden glory. This was from the 'sitting room' - which was just off the front steps and hallway of the Victorian. Across the street was the railroad - the Southern Pacific Line - and down about a half mile, the Auburn Train Station. In his days as a judge, he had the power to simply put out a flag from a second story window and the train would stop and he would be able to take the train directly to downtown Sacramento.

Of course, time took its toll on both the prestige of Supreme Court judges but upon the wealth of those who accumulated so much during the boom of the Gold Rush that the ending of that seemingly tireless stream of gold was unimaginable - as unimaginable then as the scarcity of oil was in the 1950's.

So my friend, his sister, and I were getting the house ready for some partying. We had straightened up the sitting room and were working on the living room, moving furniture around, splitting wood for fires in both fire places -- in three hours we expected to have a nice party - of the 1960's variety - the smoking was not cigarettes, though there was that too, and both were done on the front porch overlooking Auburn and what was then a Smokey and Smoggy Sacramento Valley.

Suddenly, into the house comes my friend?s mother and his brother with the idea that there was a fortune hidden in the house. They were going to find it. Chef?s knives and cleavers were first - they were plunged into all the chairs and sofas and divans and window seats. Then came the crow-bars - claw and straight - and then the hammers and axes and wedges. By this time my best friend?s oldest sister had joined in and the youngest sister, my sister?s best friend, had fled the house for our house.

From the outside the house looked like a fairy tale of Victorian ginger bread, wrap around porches, small porches off the corner turrets almost hidden in the ginger bread decorations, and facing North and South were great gables and turrets from the third story where there was a single room, the size of the entire house, floored with virgin California Black Oak. From the great gables one could look across the American River Canyon and see the mountains of Lake Tahoe - but more importantly - look upon the lode mines which made the occupants of the house so very wealthy.

The lawn leading up to the home was terraced and planted with roses and herbs and grasses which gave hidden coves with stone benches and bird baths. There were four terraces to reach the bottom of the Entry Stairway which went up fifteen feet, had a landing, and then continued up another twenty feet or so to the porch proper. The house was the standard Victorian white and would, on those amazing autumn days, reflect the colors of sunrise or sunset. It had an attic large and tall enough to serve as a dance floor should the occasion ever arise, which it did every few months for the various holidays. It was also a 'smoking room' for the men. The far side had not one, but two slate billiard tables for only ruffians played pool.

The house was the embodiment of success and good living. Even in its decline, it imbued an air of achievement, accomplishment, and ultimate Victory.

Inside that house my friend?s mother and his brother and his sister had gone stark raving mad and were destroying it, literally, before our eyes. Axes were taken to the hand sanded and stained oak and mahogany walls, the polished floor boards were ripped up and thrown aside as the frantic seeking of the imagined hidden treasure of Gold continued.

From the outside the house was the embodiment of Victorian Splendor. On the inside it was the embodiment of the darkest Victorian Insane Asylum. The scene being acted out was one of genetic necessity - not one of greed. It was simply nothing more than my friend?s mother having one of her more serious breakdowns and it threw the genetic switch in his brother and older sister and they joined in, it was an orgy of delusional destruction where the energy was synergistic - that is, each person gave each other person the energy they received plus the energy they produced - so the whole of the insanity was greater than the sum of its parts. Mother plus Son plus Daughter was greater than the three of them acting on their own.

The three of us would have fled, but we had to stay there and warn off friends and tell them that the party had been canceled - as if it weren't obvious by the chairs hurled through the curved glass at the corners of the sitting room and the insane chatter and laughter from within. My friend ran to his father?s office to tell him ;the first thing to go was the phone lines, and this being a family of great California lineage, using a neighbors phone to call in the outbreak of an insane episode simply was not done. And from his father?s office he was able to reach most of the people we were going to smoke and party with that evening.

And so it is with us - we have outward appearances, and internal realities. We hold images and embody them with great power - just as the Victorian that my best friend grew up in was embodied with grace and power of a time gone by,

Even though the original builder and Supreme Court Judge might have been somewhat more normal, he still had wood shipped from the interior of South America, mirrors shipped from Europe - remember this is the 1850's - and it was a crazy expense. And, he had married into a crazy family - the daughter was crazy because early on it was her job to oversee the wash-room of the mine her family owned and they used mercury to process the gold - so while I have seen photographs of her, and can testify that she was a priceless sterling princess made of Beauty itself - she was, by her early 20s completely insane from the mercury which would always find it's way onto the clothes of the miners - for in hard-rock mining even the clothes were washed and sluiced and processed for gold dust - 'fines' they call them because they are so small that only in the hand of an expert panner would you ever recover the gold. In the end, she died of mercury poisoning, after being confined for years to the 'downstairs room'. It was what we called it. It had been, in effect, a confinement room for his great-grandmother and the chains and cuffs still hung on the walls when each of us took our turn living in the 'downstairs room' sometime or another in our youth.

My best friend?s mother came not from that kind of insanity, but from a nearby family, also very wealthy and owners of several very well producing mines. Her insanity was genetic. And every single child, my best friend included, suffers from the same devastating internal devils and dragons. And, yet, from the outside he is extremely attractive. So much so that he spawns envy in many.

Name Of Column	Author	Title	Article Type
VoicePoints	Messing, Farrell, Dietrich-Burns	Part I: Pneumatic Artificial Larynx	Education-Med
WebWhispers Columnist	WW List	Discussion Thread- Oral Cancers	Experiences
News, Views, & Plain Talk	Pat Sanders	Comments About A Long Storm	Experiences
Campfire Philosophy	Paul Galioni	Inside - Outside	Experiences
Bits, Buts, & Bytes	Dutch	Computer Tips	Experiences
Welcome New Members	Listing	Welcome	News & Events

JoAnne Beecher - Caregiver Dubuque, IA	John Bergvall International Falls, MN	Annette Cartman - Caregiver Chicago, IL
Tom Davin Mechanicville, NY	David Felske Sun City West, AZ	Alexis Figueroa New York, NY
Bob Hanks Bullhead City, AZ	Hal King Orient, WA	Regina Kahnert - R.N. Cleveland, OH
Gerald Kennedy Saint Clair Shores, MI	Richard Kromer Sandusky, OH	Kevin & Cindy Kucker Catonsville, MD
Teresa Loffer - Caregiver Lindsborg, KS	Kathy Lutman Salina, KS	Michael MacMahon Corofin, Co. Clare, Ireland
Hugh McGrath Hitchin, Hert., UK	Richard Palmquist - Caregiver Scottsdale, AZ	Byron Regnier Marshall, MN
Ursula Strider Waynesboro, VA	Brandon Whitesides - Vendor (ATOS) Milwaukee, W

? September 2004 Barbara P. Messing, M.A., CCC-SLP
Stephanie Farrell, M.A., CCC-SLP,
Katie Dietrich-Burns, M.S., CCC-SLP,

First in a Three Part Series:

Foundation Skills for the Artificial Larynx

Part I: Pneumatic Artificial Larynx

Stephanie Farrell, M.A., CCC-SLP, Katie Dietrich-Burns, M.S., CCC-SLP,

Barbara P. Messing, M.A., CCC-SLP. All authors are affiliated with the

Milton J. Dance Head and Neck Rehabilitation Center

at the Greater Baltimore Medical Center, Baltimore, Maryland

Verbal communication connects us to our families, friends, and others in our daily lives. Losing the ability to produce voice is a devastating life event. If communication options are not made available to the laryngectomized patient then feelings of social isolation may lead to depression.

Figure 1. Instructional Method for Teaching Use of an Artificial Larynx

I = Information. The patient is informed on benefits of artificial larynges and selection of the proper device. Influential factors: purchase price and upkeep, availability, possible modifications, expediency, post-operative complications, patient preference.

P = Placement of the device to achieve. For example, with artificial larynges, the ?sweet spot? is the place in at the best clarity of sound and resonance is achieved. With intra-oral devices appropriate placement of the intra-oral tubing is discussed.

A = Articulation. Shaping sounds into speech using the articulators for precise sound production. Over articulation or exaggerated movements of the articulators is often recommended to increase speech intelligibility level. Placement of the artificial larynx should favor lip reading.

T = Timing. Appropriate ?on-off? timing consistent with syllable initiating and releasing, positions of phonemes in words and phrases results in optimum sound production and greater speech intelligibility level.

PAL = Pitch and loudness. Modify pitch to more closely resemble gender appropriate pitch level. Loudness ? volume should be adequate for the communication setting. Changes in one will usually show changes in the other.

(S.J. Salmon, Ph.D., 1983)

This is part one of a three part series to provide information on the various types of Artificial Larynges. This article will focus on lung powered, intra-oral artificial larynges known as pneumatic devices.

Pneumatic Artificial Larynges

Instruction on the use of a pneumatic artificial larynx using the ?I PAT PAL? method:

Historical Perspective of Pneumatic Devices

Over the years various types of pneumatic artificial larynges were developed and redesigned. The devices available today are the Tokyo Artificial Larynx and the ToneAire II Pneumatic.

Tokyo Pneumatic Artificial Larynx

http://www.limcosolutions.com/

The Tokyo Artificial Larynx is made of chrome plated brass for the tracheostoma attachment and a cylindrical housing with a rubber diaphragm to generate sound. This is attached to air tube for mouth placement.

The advantages of pneumatic devices are as follows:

? simple in design

? limited number of parts

? inexpensive cost

? durable

? requires no batteries

? ?hoarse? voice rather than a mechanical sounding voice

Conclusion

References

Graham, Minnie, S. The Clinician?s Guide to Alaryngeal Speech Therapy, Newton, MA, Butterworth-Heinemann, 1997.

J. Henslee, History of the Artificial Larynx, http://www.larynxlink.com/Library/Laryngectomee/history.htm

Keith, Robert, L. Darley, Frederic. L., Third Edition, Laryngectomee Rehabilitation, Austin, Texas, Pro-Ed, 1994.

? September 2004 Barbara P. Messing, M.A., CCC-SLP Stephanie Farrell, M.A., CCC-SLP, Katie Dietrich-Burns, M.S., CCC-SLP,