Internet Laryngectomee Support
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: email@example.com).
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 firstname.lastname@example.org 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.
Mary S. Banas
Frank and Judy Brown
Tanya Eadie -SLP
Eddie Kline, Jr.
Denise Wynne Merz
North St. Paul, MN
Bill & Jeri Sanders
East Stroudsburg, PA