Internet Laryngectomee Support
September 2002
Internet Laryngectomee Support
September 2002
Debbie Norton--a.k.a. Littlegose
Debbie was just ten years old when she had her first
cigarette, and was a serious smoker by the age of twelve. She was part of a
large military family of dedicated smokers -- both parents, four brothers and a
sister. Debbie said, "Everyone did it and the commercials glamorized it." It
was the cool thing to do and way to be accepted by peers at that time.
All of that came to an abrupt end in 1991 when she was diagnosed with cancer
of the larynx. To their credit, all members of her family stopped smoking and,
at least so far, no one else in her family has been touched by cancer.
Less than a month after her diagnosis she had the laryngectomy operation,
but was unprepared for the consequences. "The doctor said my voice would be
different, but I had no idea. I was completely shocked," she said.
Although she returned to her job at the Creighton University bookstore
within two weeks of surgery, she felt unable to talk to anyone about what had
happened to her, and, like many laryngectomees, found herself in a depressed
state. She said, "I wasn't prepared for the drastic changes the surgery brought
about. No one told me specifics. I could no longer swim, blow bubbles, or blow
out birthday candles. And my sense of smell and taste were gone. When I cried
or laughed there was no sound."
She hid her feelings from family and friends and would say she was "doing
fine." It was more than four years later that she finally sought professional
help to deal with her depression. But with the help of an antidepressant
medication and the continuing support of family and friends, she made the
necessary adjustments. She was able to stop taking the medication more than two
years ago.
Debbie met another member of WebWhispers in a chat room in 1997 with whom
she was destined to become close friends...Arlene Chappell, a.k.a. "Puipi." She
said, "If it had not been for finding WebWhispers and on-line friends, I might
have continued to be depressed. Listening to the group and doing things that
were suggested was more help to me than you can know. It's a bond."
After many hours of on-line chats, Debbie finally met Arlene in person in
Las Vegas. They have had three trips together including to New York and
Florida. About what WebWhispers has meant to her, Debbie said, "It opened the
door to life. This has really changed my personality. I get inspiration from
everyone and have a new understanding of people who are different. I have an
opportunity to do the right thing and help others. I try to live by that rule
and to try and make a difference; and not just talk, (but) participate."
You can contact Debbie at
Littlegose@aol.com
"Natural" Is Not Always Better
Two popular herbal remedies have
recently received bad press as the result of studies conducted by the FDA and
other researchers. Cautions have been issued for both Saint John's wort,
commonly used as an herbal remedy for depression; and kaka-kava, which is
promoted for relaxation, stress relief and anxiety.
The Food and Drug Administration Center for Food Safety and Applied
Nutrition notified healthcare professionals and consumers of the potential risk
of liver injury linked to kava-containing dietary supplements. Kava use has
been linked to hepatitis, cirrhosis and liver failure. People who have liver
problems or who are taking drugs which can affect the liver should consult a
physician before using kava-containing supplements.
The results of a controlled medical experiment demonstrated on the
effectiveness of Saint John's wort, versus the antidepressant medication Zoloft
and a placebo (sugar pill) was that St. John's wort was no better than the
placebo. Producers of St. John's wort complained that the study was conducted
on individuals the product was never meant to help...those with diagnosed
moderate to severe depression. They claim that St. John's wort is only
appropriate for mild depression. However, the researchers countered that anyone
who has depression sufficient to require any kind of medication will not get any
actual benefit from St. John's wort. Any benefit would be "psychological" or
"only in their heads" (the so-called "placebo effect").
Regardless of the merits of these herbal remedies medical authorities
remind us to keep our physicians aware of any supplements (including vitamins)
we are taking since they can interact adversely with prescription medications.
Three State Associations Meet In
October
The annual Texas Laryngectomee Association (TLA) meets at the Red Lion Inn
in Austin, Texas, on October 3-5. You can make hotel reservations by calling
1-800-RED LION. Mention the meeting.
The annual California Association of Laryngectomees (CAL) meets at the
Crowne Plaza Hotel in Garden Grove, California, October 25-27. Hotel
reservations can be made by calling toll-free 1-866- 888-8891, or contact Wayne
Baker for additional information (e-mail:
waynecb@sbcglobal.net).
The annual Florida Laryngectomee Association (FLA) meets at the Holiday
Inn-Daytona Beach Shores, Florida, on October 25-27. You can make hotel
reservations by calling 1-800-722-3297, and get additional information at
http://www.larynxlink.com/Main/FLA2002_1.htm.
Running concurrent with the FLA will be a head and neck cancer rehabilitation
seminar. While including laryngectomee rehabilitation, it will also contain
sessions aimed at other head and neck cancers. See below.
Head And Neck Cancer Rehabilitation
Seminar To Be Held
A head and neck cancer
rehabilitation institute will be held October 25-26 in Daytona Beach, Florida.
Sponsored by the Florida Laryngectomee Association, it is headed by Dr. Ed
Stone. Topics include the medical treatment of head and neck cancers, dysphagia
(swallowing problems) evaluation and treatment, artificial larynx training, lung
function, tracheostoma care, TEP and traditional esophageal speech, etc.
Teaching staff include Dr. Stone; Terry Day, MD; Penny Risher, RN; and SLPs
Donna Lundy, Lisa Proper, Paula Sullivan, and others. 13 clock hours of
Continuing Education Unit credit is available for professionals. Registration
must be made by October 10th to get the $195 rate. Those interested can contact
Lisa Proper at
proper.lisa@mayo.edu or (904) 953-2217.
Second WW Caribbean Cruise Planned
It is hard to believe since it is more than a year away, but the staterooms
for the WebWhispers second Caribbean cruise are
already going fast. The cruise
begins Sunday, November 9, 2003 , and concludes on the 16th.
The cruise ship, “Enchantment of the Seas,” leaves Fort Lauderdale,
Florida, and journeys to Puerto Rico, St. Maarten, St. Thomas, and Nassau,
before returning to Ft. Lauderdale. The current rates (subject to change) range
from the mid $600s to $1200 per person, double occupancy. You can get complete
information at this web address:
http://www.webwhispers.org/pages/cruise/WWCruise03_1.htm
Reservations are made by contacting Peggy Byron at 800-844-5785, FAX at
1-205-995-2063 or e-mail her at
CDByron@earthlink.net.
Mucus And Those Amazing Cilia
Still not gotten your fill of information about
mucus? If not, then you will want to learn about those amazing cilia . . . "the
mucus conveyer belt."
What we laryngectomees think of as excessive mucus is right up there with
the major problems we face along with the loss of our original voice and
diminished ability to smell and, for some, to taste and swallow. Managing mucus
was just not a major problem for most of us prior to becoming a lary -- it
happened automatically and without much conscious involvement on our part. But
a better understanding of the respiratory system can assist us in adjusting to
our new anatomies and lives, and seeing the brighter side of mucus.
There are millions of them per square inch, and they are only visible under
the most powerful of microscopes. We are talking about the tiny mucus covered
hair-like cells which line our respiratory systems-respiratory, cilia.
There are other cilia cells in the bodies, such as ones which are in our noses
and help us to detect odors, but we are addressing the respiratory ones.
The primary function of respiratory cilia is to help trap contaminants
breathed in, and then move those mucus trapped contaminants upwards. They serve
as a conveyer belt for the transportation of mucus, and, along with it,
contaminants including agents of infection. Before becoming larys, the cilia
conveyed the mucus to our mouths where we could spit it out, or, more commonly,
swallow it. Mucus which was swallowed could then be broken down by the
digestive system for safe disposal.
But by becoming laryngectomees and losing the upper part of our respiratory
systems, the conveyor belt now ends at our stomas. So what used to be usually
taken care of without our even noticing it, now constitutes a problem as we
cough up mucus throughout the day. So even if the amount of mucus we now
produce is actually no greater than it was before we became laryngectomees, it
can seem that it is greater since we now have to be more actively involved in
getting rid of it. Many of us have become major consumers of tissues, or won't
think of leaving home without several handkerchiefs.
The more polluted, drier, and cooler the air is which goes into our stomas
and down into our lungs, the more mucus we produce. So it is quite possible
that as individuals we ARE producing more mucus than before becoming
laryngectomees as our bodies try and compensate for the changed quality and
characteristics of the air we breathe. The need to improve the quality of
respiratory air is the basis for recommendations to wear HME (heat/moisture
exchange) filters and other stoma covers, as well as the various ways to add
humidity to this air. Cilia which are not working properly permit mucus and the
pollutants in them to stay in the trachea (wind pipe) and lungs. This produces
congestion, but is also a contributing factor in the development cell
abnormalities leading to lung cancer, along with other respiratory diseases.
Cilia also cease to work with the
relative humidity in the trachea and lungs goes to 30% or below.
Cilia move in a coordinated manner in a way which has been described as
like oars in the water (the word "cilia" means oars), waves, a broom, or wind
blowing through a wheat field. (Those with the right kind of software can view
a movie of cilia at work at:
http://members.aol.com/tiermensch)
Some bad news for us former smokers is that the chemicals in tobacco weaken
and can kill them completely. Many former smokers have chronic breathing
problems in part because their respiratory cilia no longer function, or are
completely absent.
But the good news is that when we stopped smoking we experienced many
immediate improvements, and many of these are also of long term value to us in
both prolonging our lives, as well as the quality of our lives.
So once we have done what we can to improve the quality of the air reaching
our lungs in terms of cleanliness, humidity, and temperature, we just need to
try and remember when we have gone through a half of a box of tissues that the
mucus we are coughing up is bringing with it substances which we best rid of.
Lary Laughs
 |
|
Mary S. Banas Katy, TX M3j7b34@aol.com |
Frank and Judy Brown McCall,ID febrown@spro.net |
Joanne Claus Windsor, CA joanne.claus@gmail.com |
|
Tanya Eadie -SLP London, ON,Canada teadie@uwo.ca |
Ronald Haldas Chesapeake, VA haldas@cox.net |
Eddie Kline, Jr. Beaufort, SC retiredchief@charter.net |
|
Denise Wynne Merz Louisville, KY Mickimerz@aol.com |
William Moore Trenton, OH biguy@erinet.com |
Richard Mulvaney North St. Paul, MN pkrat@webtv.net |
|
Rita Myers Baltimore, MD r-myers@worldnet.att.net |
William Rector Memphis, TN wrrector1@earthlink.net |
Alan Ritchie Plattsburgh, NY willfulchild@yahoo.com |
|
Jacquie Robertson Tulsa, OK JacquieRob@aol.com |
Rick Roughsedge Margate, FL Rick6150@comcast.net |
Bill & Jeri Sanders Channelview, TX JeriSanders@aol.com |
|
Karl Stangeland East Stroudsburg, PA kpland@enter.net |
Jerry Uhl Homer, IL juhl@cm.math.uiuc.edu |
Victor Wartofsky Potomac, MD wartofsky@comcast.net |
|
Bobbie White Lockeford, CA Bobbiewhite@attbi.com |
