Internet Laryngectomee Support
December 2001

"Tennis Anyone?"
by Rita Kinney

    In 1993 I became a laryngectomee as the result of a rare form of cancer.  My surgeon believes that I had "Plummer Vinson Syndrome," which is an anemia that causes cancerous cells.  This type of tumor gave no warnings until it had spread to the lymph nodes on the left side of my neck and shoulder. 

    The tumor began at the base of the tongue.  But since it was a stage four they had to remove my larynx and reconstruct my esophagus by doing a pectoral flap.  With this procedure the surgeon pulls up the pectoral muscle from the chest and attaches it to the esophagus wall to allow the patient to swallow again.  I also had a radical neck dissection on the left side where fifty lymph nodes were removed.

    I used the Servox for two years and tried to play tennis with it.  I had to put it on the bench since I couldn't use it to speak as I held a racquet at the same time.  During a tennis match when we changed sides on the court I would use the Servox to talk to my tennis partner.  Several times I dropped the instrument on the court.  All in all, it was very frustrating for me.

    When I went to my first California Association of Laryngectomees conference, I learned about the TEP.  I went to San Francisco where Dr. Singer did an insufflation test, and I passed the test with flying colors.  I have used the TEP and hands-free valve, and what a blessing to be able to speak on the tennis court again. 

    After my surgery and radiation I returned to the tennis courts for the camaraderie.  I never thought that I would be involved in local competitions again.  But five years after my surgery, I competed in my first United States Tennis Association National Championship in Tucson, Arizona.  Once again this past October my team, which represented Northern California, competed in the National Tournament in Palm Springs, California.

    We did very well, and competed with teams from Kentucky, Puerto Rico, Hawaii, Colorado, Arizona and New York.  Our team ended up in fourth place in the entire United States.  We play a doubles format and everyone has to be over 50 years of age.  I just celebrated my 60th birthday this past October, so I am one of the senior members of the team.

    I have also gotten into a strength training program and warm up on a stationary bicycle.  After I have warmed up I do some weight training.  You operate different weight equipment for different parts of your body.  I have found that if I want to stay with my tennis that I need to keep all of my body healthy.  I have also found that I now have more flexibility on my left side.

    My husband of 36 years, Jim, is my best cheerleader, and has gone with me to our different competitions.  My two adult children are very active in sports.  My daughter plays tennis and my son is a soccer player.

    I have asked my physician if I was doing the right thing with all of my activity, and she said "Go For It!"

    I am the President of the Lost Chord Club of Santa Clara County in Campbell, California.  We have a wonderful supportive group, and our main focus is to get our lives back to normal.  Most of our members use the TEP, and our speech therapist, Joan Enns, has a hard time getting a word into our animated conversations.

Has Becoming a Lary Made you a Better Person? (Part 2)

    This past June a question was put to the members in an e-mail about what the overall impact of becoming a laryngectomee had been for them.  It read "A friend of mine said that they thought that becoming a lary had made them a better person.  How about you?  Better, or worse?"  Here is part two of the answers those who responded gave:

    I am certainly not the same person that had surgery almost nine years ago.  Some of that is  good, she was a workaholic and lived in "deadline mode."  I think of that life now and it is unreal  that I would waste my life that way.  I am not sure at what point I would have realized that if I had not gone though the surgery.  It has not helped my tolerance for people who choose to be stupid for convenience, but there is still hope.  I am not giving up.  Even on a rough day, the one positive thing is, many of us would never have met the others if not for this one binding thread.  In that alone we have received a gift from all of this. (Debi Austin)

    I'm a better person for it. I find I have a lot more patience with people.  I give more of myself.  I take time to watch the clouds or the stars or a sunset or just feel a nice, cool breeze on my face.  I never used to be able to take "one day at a time," but I find that now I do. (Marsha Bonner)

    I am not sure that I am a better person but I find my minutes, hours, and days to be more precious and I no longer waste time on matters of no importance such as being frightened.  I have no more time for fear. (John Edwards)

    I am no different from who I was before I had surgery and lost my voice.  Yes, It is harder to say what I feel needs to be said, at least physically harder.  But having cancer and the subsequent operations, treatments, etc., hasn't really made me a different person.  When this subject was brought up the first thing that came to mind is the book that Christopher Reeve (AKA Superman) wrote after he became a quadriplegic, "Still Me."  Having lost my ability to speak has slowed my communications down and many things are physically different now, but I am still me.  I can't honestly say that I appreciate life any more or less than I ever did.  It hasn't made me want to go on any kind of crusade against the evils of smoking or drinking, or any other human fault.  I don't go to church any more or less than I did before surgery.  I am still just plain old me. (Larry Evans)

    I am a better person today than I was eleven years ago.  Facing adversity, in the form of two bouts of a cancer and the outward manifestation (laryngectomy) that never goes away, is what has forced me to become a better person. (Philip Clemmons)

    I feel that I am more appreciative for the smaller things I tended to overlook before my surgery.  I don't think I am better but I realized that I have a strength in who I am which has helped in my transition.  I am still learning. I think that having to face one's death and the adjustment we make if done successfully makes one feel positive.  This positive feeling and the insights developed from this experience I think makes one feel as if they're a better person. (Mike Holder)

    I was reminded again of the stages we seem to pass through as we learn our life's lessons and mature as we experience different events.  As children we are dependent, later we strive to become independent, finally we learn the beauty of being interdependent.  The laryngectomee community has a mission that works best when we understand how interdependent we all are. (Elizabeth Finchem)

    I am what I am and that's all I am.  I think today I have a better understanding of what I am, but I doubt that makes me a better person.  It does seem to make me more comfortable within myself. (Max Hoyt)

    A better person from having a Laryngectomy?  I don't think so.  I thought I was a pretty good old boy before the five years of hell that I have gone through, ha! (Bill Hathcock)

    I do not know if I have changed, I know I have gotten deeply involved in talking about what has caused my condition.  I am not a drum beater or a person who ridicules or tries to embarrass  anyone who is either abusing alcohol or using the dreaded cancer sticks.  What I have and am doing is just talking to groups and letting them know how these things can and do drastically change lives.  Have I changed, I am not sure I can still answer that question?  I know at times my frustration level goes up when I have to pause to clear my TEP to continue a conversation.  I know I sometimes get frustrated when I am cleaning my stoma area and my valve.  I know I get frustrated when I leave without a stoma cover and drive around the block to come back to get one.  I guess I got frustrated before becoming a lary but I guess for different reasons. (Ron Gillette)

    I don't think I'm better or worse as a person.  What I now know, though, is the importance of friends, family and other communities.  I have become more outgoing, less of a loner than I used to be.  So, people think of me as a better person than I was before the laryngectomy. (Carl Strand)

    There's no doubt I'm a better person for having had throat cancer.  Had I not, I'm sure I would still be wasting many of my nights in a bar.  I'd like to think I would have quit smoking eventually, but who knows: "The smoke bone's connected to the booze bone---".  A couple of weeks ago  Elizabeth Finchem and I visited two patients in the same hospital, one seven days post-op with plenty of family and professional support; one three years post-op who had "fallen thru the cracks," and was in "psych lockup" because of a suicide attempt.  Two very different cases.  While working with the "lost soul," on hearing him speak for only the second time (in three years!) with an AL, and watching as Elizabeth got him to mutter, "I can't do that!" esophageally (although accidentally), prompted me to comment on the drive home, "After 17 years, I'm still amazed at how much difference a single one hour visit from us can make in some people's lives.  What a privilege we've been afforded!"  I had the same thought yesterday as I spoke to 175 high school kids and their teachers.  Along with our "adversity," we've been handed a marvelous opportunity.  Let's take advantage of it.  At 60, I think I'm happier now, am enjoying life more now, than at any other stage of my life.  Would I be able to say that had cancer and surgery not been a part of my life?  Perhaps.  Perhaps not. (Ron Langseth)


    Well, we're non-smokers, anti-tobacco.  If that ain't better...? (Frank Deam)


    I seriously know for a certainty that I am a better person since my laryngectomy.  I am more compassionate to my family, friends and strangers.  I love showing concern and taking the time to say hi to perfect strangers and smile (I always did do that) but I enjoy it more now.  I don't procrastinate (as much) as I did before, therefore getting more things done and feeling a good sense of accomplishment. I am more patient.  Of course, I learned the patience thing when my husband had his head injury.  He had to relearn everything and, boy, talk about taking time.  But  patience I did learn.  It's a wonderful thing to have because you don't have to worry about that "road rage" or any other rage that may be going on in the world.  I use my time to the best way I can to get the most accomplished and I don't waste time doing what is fruitless.  Wise King Solomon said "all this is vanity, a striving after the wind."  Having cancer, head injury or whatever a person may go through to find the bottom line is to enjoy life and be content is to have the greatest happiness and if we have God in our lives, I don't figure we can lose.  I have learned to "hear" with better hearing since my surgery.  Normally, when we talk to people, subconsciously, or otherwise, we may be forming thoughts in our minds of how to answer this person.  Having a laryngectomy has afforded me the ability to "read between the lines" or "hear between the thoughts."  I have better, more meaningful, conversations with people.  All in all, with my cancer progressing quite rapidly to that eventual end, I am a happy person and for once in my life I enjoy my days - stress free.  I am not anxious for tomorrow - for tomorrow will take care of itself. (Marie Sherwood)

Abandoning the TEP

    A few individuals experience such problems with the TEP with leakage or poor speech that a decision is made to abandon it in favor of the artificial larynx or other speech or communication method.  The problem with merely removing the prosthesis and allowing the puncture to heal closed by itself is that in the meantime saliva or other liquids will drain through the puncture and potentially into the lungs.  This creates a danger of "aspiration pneumonia."  Dr. Carla Gress,  SLP (speech-language pathologist) offers the following suggestion:

    "The easiest and safest way to close a puncture is to insert successively smaller (diameter) catheters into the puncture every few hours until you are down to about size 10 or 12 French.  Then at night before retiring, remove the last one all together, and don't eat or drink anything. Since the frequency of spontaneous swallowing decreases during sleep, you will aspirate minimal, if any, saliva.  By the next morning the puncture should be closed for most folks with healthy tissue."

    Dr. Gress can be reached at carla_gress@hotmail.com 

California Hotel Chain Goes Smoke-Free

    California has been aggressive in banning smoking in restaurants and bars.  Following reports from the Center for Disease Control (CDC) reporting a dramatic decline in nicotine levels in nonsmokers subsequently, all of the California Woodfin Inns have gone smoke-free.  All rooms and public places within the hotels became smoke-free on September first.  Woodfin Suite Hotels and Chase Suite Hotels are based in California and are located in 17 other markets in the U.S.  If received well in California, the chain expects to also convert their other hotels to the smoke-free status.

Give 'em the Raspberry!

    Give 'em the raspberry.  Not the rude gesture involving your tongue, but the fruit, says a recent article in Cancer Research. It turns out that raspberries have been shown to prevent and treat esophageal cancer in experiments carried out at Ohio State University. 

    Among the berry family, black raspberries are full of nutrients and phytochemicals which have been shown to prevent some cancers.  However, too many raspberries in the diet may actually encourage the growth of some cancers.  Research has also shown the same thing for some vitamins which help prevent cancer, but actually speeds cancer growth once a cancerous growth exists.  As with so many other things, too much of a good thing frequently does turn out to be bad.

Caregiver Awareness Month

    We found out after the November issue of the WWJ came out that the month of November, along with including Lung Cancer Awareness week, is also Caregiver Awareness month.

    While the idea that we are not alone as we face cancer and rehabilitation is comforting to us, the same idea should remind us about how our families and friends also carried and continue to share a work and psychological load along with what we bore.  It is hard to imagine that any laryngectomee really faced their trials alone, and whether their caregivers were near or far, we all owe them our love and thanks for all that they did and do.

Hypothyroidism and Laryngectomees - Questions and Answers

    Feeling run down? Depressed?  Doze off any time you lie down?  Gaining weight without much change in your diet?  Have any other of the symptoms listed in the graphic below?  If so, you might be hypothyroid. 

    How many laryngectomees develop hypothyroidism?


    As many as 61% of laryngectomees will develop hypothyroidism.  This startling figure comes from research published in the Archives of Otolaryngology Head and Neck Surgery last year following analysis of data from an Ohio study of nearly 200 head and neck cancer patients.

    But whether this high figure is supported by subsequent research or not, there is little question that laryngectomees are at much greater risk for developing hypothyroidism than the general public where approximately 3-5% will eventually develop it.  In the general population, it is more common in women, and it tends to develop with age.
   
What is hypothyroidism?


    “Hypo” is the Greek word for “under,” and hypothyroidism is a condition where there is under, or lowered, production of hormones by the thyroid gland. 

    The thyroid is a small shield or butterfly shaped gland in the front of the neck.  It wraps part way around the trachea (windpipe) just below where our voice box used to be.  Prior to the removal of the larynx, it attached to the lower part of the voice box.  The thyroid gland produces hormones which contain iodine.  These hormones are essential for the proper functioning of every cell in the body.  They regulate the growth and rate of functioning (metabolism) of cells, and therefore affect every organ in the body from the skin and hair on the outside of the body, to every internal organ.  The most important hormones produced by the thyroid are T3 (triiodothyronine), and T4 (thyroxine, or tetraiodothyronine).
   
Why does the thyroid slow down or stop functioning in many laryngectomees?


    In some cases half or even the entire thyroid has to be removed in order to get all of the cancer.  If all of it is removed you will be started immediately on hormone replacement therapy while still in the hospital.  Another complication from surgery is that the blood supply to the gland may be reduced which can cause reduced function or even the eventual death of the thyroid.  Probably the most frequent cause is radiation.  Radiation causes the collapse of small blood vessels in the gland and it often ends up with a poor blood supply and reduced function.
   
What are the symptoms of hypothyroidism?


    Hypothyroidism is difficult to diagnose since the symptoms are varied and shared with a great many other medical conditions.  The experts estimate that around 13 million Americans are walking around with undiagnosed hypothyroidism.  Those with mild hypothyroidism often have no symptoms.  Eventually, the symptoms may appear gradually and singly, or in groups.  Symptoms include depression, weight gain, sleepiness and fatigue, apathy, constipation, sweatiness, hot flashes, dry itchy skin, intolerance to cold, forgetfulness, premature gray/course/dry hair, swollen eyelids/puffy face, sparse eyebrows and other hair loss, inability to concentrate, muscle weakness or cramps, constipation, numb and tingling hands, thick tongue, anxiety, headache/dizziness, hearing loss, slowed heart rate, aches, pains, arthritis, decreased sexual interest, and others. 

    In women, the symptoms are especially likely to mistaken as menopausal in nature, or as depression.  And since laryngectomees tend to be older, these symptoms are often mistaken for the natural aging process, stress, vitamin deficiencies, Parkinson's and Alzheimer's diseases, arthritis, or as reactions to medications being taken for other conditions.

   
How is the diagnosis of hypothyroidism made?


    The diagnosis is made with a simple blood test which measures the level of thyroid hormones (T3 and T4) and TSH (Thyroid Stimulating Hormone).  There are normal ranges which have been calculated, and if your hormone levels fall below the normal range and the TSH levels above it, the diagnosis is made.  This test is not typically ordered by physicians as part of the blood tests done with a routine yearly exam, and the laryngectomee may have to remind the physician to check thyroid function on a yearly basis.
   
How is hypothyroidism treated?


    The treatment of hypothyroidism almost always requires lifelong therapy.  But it is treated by taking just one small pill daily.  Before synthetic levothyroxine (T4) was available, the hormone was obtained from animal thyroid glands.  Unfortunately, this lacked consistency of potency from batch to batch, and the pure synthetic T4 is preferred by prescribing physicians.  A name brand is Synthroid, and the generic is Levoxyl.  Typically the individual will be started on a low dose and the blood test repeated.  The dose will be raised until the desired level is reached, at which time monitoring may decrease to once per year. 

    Most family physicians and even many ENTs are not aware that laryngectomees are prone to hypothyroidism.  Because of this, we may have to ask our doctors if they will order that test done along with whatever other blood tests are being done as part of the routine physical exam.

Tobacco Advertising Ban Considered in the U.K.

    The U.K. is considering a bill which would ban all tobacco advertising.  Experts testified that banning advertising would save 3000 lives per year from the current tobacco-related death annual toll in the U.K. of 120,000.  The estimate for tobacco related premature deaths in the U.S. is 400,000 per year.

Chemo/Radiation Combo Preferred Treatment in Europe

    A number of recent studies including one reported in early November conclude that a combination of radiation and the cancer-fighting drug Cisplatin is more effective than either radiation or the drug therapy alone.  The most recent research was reported at the annual meeting in San Francisco of the American Society for Therapeutic Radiology and Oncology.

    The study involved 334 patients with locally advanced squamous cell carcinomas of the oral  cavity, oropharynx, larynx, or hypopharynx.  One group received radiation alone, one group Cisplatin alone, and a third received a combination of radiation and the drug.  At the end of three years, 59% the group receiving both were disease free, while just 41% of the radiation only group were disease free.  The results were especially hopeful since the entire group were at risk for cancer because of continued smoking and drinking.

    According to Reuters, the physician in charge of the research, Dr. Jaques Bernier, concluded by saying that the combination of radiation and chemotherapy is now "the standard treatment in Europe."

Alaska Cruise - Sign Up Now!

    The Alaskan Inside Passage cruise, sponsored by WebWhispers, has new low prices in several categories.  The new rates apply for everyone who has already signed on and some  cabins are still available at these great rates.  There is now a waiting list for balcony cabins, but we had reserved a good number of a special 55+ rate of $764 per person, double occupancy, for ocean view cabins.  The same cabin without the Senior discount is $963 per person.  The cruise will follow the IAL Meeting, leaving Vancouver July 14th, returning the 21st. For more information, call Peggy 1-205-995-0036, 1-800-844-5785 or visit the website:   WW Cruise - 2002

Lary Laughs

    What if they made a lary doll. You would wind it up and it would _________.  This idea was presented to the membership for their suggested punch lines.  Here they are:

You wind the lary doll up and it_____

    coughs
    
    sounds like a robot

    says "'ello"

    checks its e-mail

    gives you a hug

    reminds you of the value of life

    whispers

    doesn't sing

    sings

    kisses your Barbie doll and blows on her neck

    opens its mouth, but nothing comes out

    blows bubbles out its neck

    keeps talking, and talking, and talking

    coughs a big glob of mucus

    impersonates Marcell Marceau

    swallows a lot of air, belches some, and then passes gas
                                                                                                                                  
    says "ahhhhhhhhhhhhhhhhh"                                                               
                                                                                                                                                                          
    sounds like R2D2                                                                           

         
   
says "Kiss me, baby. I keep going, and going, and going"

    does everything it did before it became a lary doll

     Thanks for the punch lines from Kay Allison, George Cocking, James Cornish, Michael Csapo, Mark Crowe, Caren Dickerson, Jim Fohey, Paul Galioni, Ron Gillette, Judy Griewe, Margaret Hayes, Gary Hurst, Roger Jordan, Rita Kinney, Jim McDougall, Vicki Eorio, Reuben Pruitte, Judy Ramboldt, Pam Ridgeway, Ron Singleton, Marlene Snider, and Dick Williams. 




Welcome New Members 


    We welcome the 14 new members who joined us in November:

Allan Bernst
 Rainy River, Ont., Canada 
jabernst@hotmail.com
Angelina DeMann
Bridgeville, PA
raycool@webtv.net
Dominick Farruggio
Brooklyn, NY
Ultra93@aol.com
Dick Fuhler
Ames, IA
rhfflag@qwest.net
Oonagh Griffin - SLP
Exeter, Devon, UK
oonagh@eastdevon.com
John Harper
Foster City, CA
4harpers@home.com
Denise Heath
Derry, NH
Deabh123@aol.com
 Claire Hitchinson - Head/Neck Nurse 
Exeter, Devon, UK
clairehitch@yahoo.com
 Carolyn Hodge - Caregiver 
Miami, OK
chodge@rectec.net
Donna Holcomb - SLP
Jacksonville AL
Csponge8@cs.com
Marshall Parsons
Phoenix, AZ
taters0330@msn.com
Frank Pitkin
Newport, NH
fndpitkin@sugar-river.net
Judith Ann Rice
Springfield, OH
Jjudieanne@aol.com
Carol Stimac
Mesa, AZ
c.stimac@att.net



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.

 
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