Title/Author Topic Article Type
Robert Skimin Dodging The Bullet Experience
Humidity Gauge Humidity Equipment
Oral & Head & Neck Cancer Cancer Awareness Week News & Events
Radiation Failed Outcome Of Cases Education
Positive Attitude Surviving Cancer Research
Text-to-Speech Computer Programs Equipment
Tobacco Settlement Money States Spending Tobacco
New Communication Device Florida Larys Equipment
Welcome New Members News & Events

 


Internet Laryngectomee Support
April 2003


Robert Skimin - Dodging the Bullet

Introduction

     How effective is radiation or chemoradiation in curing larynx cancer?  The statistics from groups like the American Cancer Society give figures in the 90 percent rage for lower stage cancers, and in the 50-70 percent range for more advanced cancers.  And we are told that the use and effectiveness of non-surgical approaches to treating larynx cancer are continuing to improve. 
    
     But ask a group of laryngectomees how effective radiation or chemoradiation is in curing larynx cancer and you are likely to hear a very different story, since, for those who had it in hopes of avoiding the laryngectomy, it failed.  We have been told that those whose cancers are cured just return to their lives and generally do not join larynx cancer support groups, so we are just not likely to hear from them.  But just who are these individuals whose larynx cancers were cured with radiation? 

     One is them is Robert Skimin.

Dodging the Bullet

     He was told in 1991 that the tickle in his throat was probably the result of GERD (Gastro-Esophageal Reflux Disease).  So he raised the elevation of the head of his bed, ate earlier in the evening, and took medications for his acid stomach.  But the tickle continued, and one day he noticed a tiny lump on his neck.  A biopsy confirmed that he had larynx cancer, and his physician told him that removing his larynx was the only realistic chance to save his life.  At the time, he was on the road promoting his latest book, Renegade Lightning.

     Robert Skimin had retired from the U.S. Army and had become a well known historical novelist.  One of his books, Apache Autumn, had been nominated for the highest honor, the Pulitzer Prize.  A major part of the job of most authors is traveling and talking about their books via the "promotional tour."  He had also conducted seminars and given lectures on writing and publishing.  The diagnosis and potential loss of his voice rocked his world.  "I was one of those people who feels indestructible," he said.  "I was facing my own mortality.  I was devastated."  A physician friend suggested getting a second opinion from the top ranked U.S. cancer hospital, the M. D. Anderson Cancer Center in Texas.  He learned of a radiation treatment regime being used there and was told it might give him a 75% chance of recovery, and with his larynx intact. 

     "The moment I heard that, my spirits just shot through the roof.  'You take care of the 75% and I'll take care of the other 25%,'" he told his doctors.  He continued to write as his treatments stretched over two months.  "Writing occupied my time and my mind.  There was no way I would be a moping patient.  This was something I had to go through to get on with my life," he recalled.  He listened to motivational tapes and read books which offered hope.  "When you're in that unknown, it is absolutely vital to find peace of mind.  Confidence does it for me.  I had no doubt that this was going to work."

Battles and Writing

     Robert Skimin was a talented artist, but he left his hometown in Ohio to enlist in the Army.  He was just 18.  He became a paratrooper, artillery officer and pilot of light aircraft and helicopters.  Decorated several times, he became a Green Beret and one of the Army's youngest officers.  But another battle for Robert was with the bottle.  And in 1976 he wrote a book about alcoholism, The Booze Game.  His own battle with alcohol gave him an additional perspective on General U.S. Grant when he wrote Ulysses.  Ironically, former President Grant died of mouth and throat cancer.


     Among his other books include a four volume adventure series, Soldier for Hire; Chikara!, a novel of a family from Hiroshima, Japan, which comes to America; Gray Victory, a novel which explores what might have happened had the South won the Civil War; Renegade Lightning, a World War II aviation novel; The River and the Horsemen, about Custer's battle at the Little Bighorn; Custer's Luck, which provides an "alternate ending" to the life of Custer; and Violent Sky, a sweeping story of aviation in both World Wars.  Works in progress include Derzhava, a novel of 20th century Russia, and a book about military heroes.

     Cancer-free for more than a decade, nicotine free for two decades, and sober for more than 33 years, he said, "No one knows more than I how fortunate I am to have kept my voice and my life for these many years.  For those not so fortunate, I can only say, 'Thank God for what you have, and think of how you can give something back...if it's just sharing your story.'"

(Based on a story appearing in the M. D. Anderson Network Newsletter.)     http://www.mdanderson.org


Humidity Gauge

     Still another battery powered humidity gauge is now available.  This one measures indoor and outdoor temperature (or the time), as well as indoor humidity. 

     Since dry air is a major cause of problems for laryngectomees, many find that adding humidity to indoor air and monitoring it can translate into increased comfort.  A good indoor humidity level for laryngectomees can be as high as 55-60% (maximum) without any adverse effects on indoor air quality or the comfort of others.

     A comprehensive article on laryngectomee health/comfort and humidity can be found in this issue of the WWJ:

http://www.webwhispers.org/news/dec2000.htm

     The humidity gauge pictured cost under $20 at K-Mart in the home and garden section.

Oral and Head and Neck Cancer Awareness Week

     April 7-13th is Oral and Head and Neck Cancer Awareness Week.  Many community hospitals, clinics, and individual doctors will be sponsoring a National Free Screening Day on April 11 from 10 A.M. to 4 P.M.  The Yul Brenner Head and Neck Cancer Foundation is a major sponsoring agency for the awareness week activities.

     Program details vary by community, but some include an outreach campaign, focus on research, free screening, a 5K run/walk on Saturday, and closing ceremonies on Sunday the 13th.


    Participating hospitals and screening sites can be found at www.yulbrynnerfoundation.org

Outcome of Laryngectomy on Cases where Radiation Failed

     One thought which some have who have been diagnosed with larynx cancer and are told that radiation or chemo/radiation is a treatment option is to develop a fear that a failure of the non-surgical treatment carries a higher risk of death.  Put another way, if some patients are told that radiation has an 80% chance of success for their stage cancer they may interpret that as meaning they stand a 20% chance of not surviving at all.  Assuming good follow up medical screening to detect recurrences, this fear is unfounded, according to a number of recent medical studies.

     The results of one study conducted at the University of Pennsylvania on individuals for whom radiation failed who had to have what is termed "salvage" laryngectomy surgery was reported in the January issue of the Archives of Otolaryngology Head and Neck Surgery.  The study on 517 patients measured the long term effects of those who underwent salvage laryngectomy following the failure of three different treatment patterns involving radiation alone, or with various schedules of chemotherapy (before radiation, or at the same time).   From 52 to 59% of patients undergoing the treatments reported major and minor side effects regardless of the type of treatment.

     The results were that the survival of patients undergoing salvage laryngectomy was not significantly lower.  Said a different way, electing a non surgical treatment did not increase the death rate of those making that choice, although continuing side effects from the non-surgical treatment were possible.  This conclusion is in line with several other similar studies.  The primary and most significant negative impact of trying the initial radiation or chemo/radiation treatment in this study was that more patients developed fistulas (slow to heal wounds). 

     As is the case with any individual medical study, they are individual pieces of the knowledge puzzle and, at best, represent the best information available at a given point in time.  Conclusions are always tentative and subject to change in the face of new information and research.  Before changing treatment protocols, the medical profession requires follow-up and "replication" studies (additional researchers following the same procedures and obtaining the same results).


Positive Attitude and Surviving Cancer

      Who is more likely to survive a head and neck cancer--a pessimistic or optimistic patient?  According to a study reported in the February issue of the Journal of Clinical Oncology, the optimist is more likely to be alive a year after diagnosis than the pessimist.

     The research was a joint Canadian and French research project, and involved patients diagnosed with several types of head and neck cancers.  Pessimistic patients and those living alone where more likely to fail to survive for a year compared to optimistic patients independent of other factors such as socioeconomic background or medical condition.

Text-to-Speech Computer Programs

     Some laryngectomee patients who are unable to use any kind of oral communication may benefit from the use of computer programs which will take anything in written form and speak it out loud.  And some laryngectomees are able to utilize them in the immediate post-operative period when they are unable to use an electronic artificial larynx.  There are a number of such programs on the market, and some computers come with such a program pre-installed.

     One free program is available for downloading at http://chipspeaking.com.

     And another free one is available at http://www.etriloquist.com.

Many States Spending All Future Tobacco Settlement Money

     The story is familiar by now that many states have spent their tobacco settlement money on about everything except programs to keep the next generation of children from becoming addicted to nicotine or to aid the victims of tobacco use.  One of the more bizarre uses was North Carolina which used most of its yearly tobacco payments to improve the production and marketing of the state's leading crop -- tobacco.  Humorist Dave Barry compared it to ''using war-on-terrorism funds to buy flying lessons for al-Qaeda.''  But some states are not just spending current income from the settlement.  They are spending all future income as well. 

     The primary reason is that laws in most states require that budgets be balanced.  And with income shortfalls, states are faced with either cutting back government services or raising taxes.  Since neither is politically popular, many have looked upon current and even future tobacco settlement funds as "free money" to use in balancing state budgets.

     This past January Wisconsin traded 25 years of future tobacco settlement income for $1.3 billion now, and spent it all on balancing a single year's budget.  Some have described the process as similar to lottery winners who have the choice of a large amount of money spread over many years, or a significantly smaller amount up front.  For Wisconsin, the decision is particularly troublesome since 40% of high school seniors smoke.

     According to an article in USA Today, the Washington State Attorney General, whose state tapped part of its tobacco money last year to balance the budget, says it's a disastrous policy.  ''Never in my wildest nightmares did I think we would give up this settlement for cents on the dollar.''   The state Attorney General was a lead negotiator with the 46 states in the tobacco litigation talks and objected to her own state's plan to spend future settlement money now.  As more states follow the same pattern, she stated, ''The money in the tobacco settlement is as addictive to states as the nicotine in cigarettes is to smokers."

     And Wisconsin is not alone.  California, traditionally a national leader in the fight against smoking, is selling a decade's worth of settlement payments to raise $4.5 billion.  In New Jersey, where the former governor promised in 1998 that ''every penny'' from the settlement should be put in trust for public health, used it instead to raise $1.1 billion last year to balance the state budget, and could tap up to $2 billion more this year.  Over the objection of the state's Attorney General, Washington sold more than a quarter of its tobacco settlement last year to raise $450 million.

     And other states are considering doing the same, including Colorado, Missouri, and New York.

     Concerning the squandering of tobacco money now to balance state budgets, the Washington State Attorney General concluded, ''It's selling our children's future.''

Florida Larys Get New Communication Device
by Judith Ramboldt, President, Florida Laryngectomee Association

       This unit has been long in coming.  For years, many people in Florida worked to get some sort of way via telephone for the laryngectomee to communicate.  Other than an TTD, many larys could not use the phone because of soft esophageal or TEP speech.

       Working with the State of Florida through the Florida Telecommunications Relay Incorporated (FTRI), the FLA has been trying for over a decade to have speech aids added to the list of state provided communication equipment.  Beginning in late 2000, Griffin Laboratories (manufacturer of the TruTone speech aid) began coordinating with the FLA and FTRI to find a solution that would  meet both State law and practical use requirements.

       The new TeliTalk electrolarynx began shipping to Florida residents, free of charge, courtesy of the state of Florida, at the beginning of March this year.  A telephone based speech aid, the TeliTalk is based on the TruTone.  Aside from a power cord coming out the bottom, it is operated just like any other speech aid, allowing for a variety of neck placements and oral straw use.  This unit will not work unless it is connected to the telephone.

       To apply for a new TeliTalk electrolarynx, which is only available to a Florida resident, a person will need to fill out an application form (make sure to ask for the "TeliTalk Special Equipment Application"). There has to be proof the person applying for the unit is a resident of Florida and be certified as a laryngectomee by a speech pathologist or other State authorized individual.

       This has been a long time coming. But finally, the laryngectomees of Florida are being recognized as people who need aid on the phone.  James Forstall, Executive Director, Florida Telecommunications Relay, Inc. and Matt Griffin of Griffin Laboratories need to be commended for their unflagging diligence to bring this dream to reality.

Welcome New Members 

     We welcome the 21 new members who joined us during March 2003:

 

Hillman Alston
Los Angeles, CA
  hillmanalston@earthlink.net   
Dennis Barrett, ATOS Medical
Running Springs, CA
  dennis@thecalicocupboard.com   
Louise Bass
Milton, Somerset, UK
  louise.mary@lbass.fsnet.co.uk   
John Behun
Raleigh, NC
jbehun@usps.gov
Jan Bloom
Teaneck, NJ
JanBTeanec@aol.com
Eugene Brase
Owatonna, MN
Drache.Darla@mayo.edu
John Brooke
Bristall, W. Yorkshire, UK
johnmbrooke@btinternet.com
 
Scott Brooks, RN, BSN
ATOS Medical
Milwaukee,WI
Scott.Brooks@atosmedical.com
Robert Carey
Tyne & Wear, UK
kb002d1959@blueyonder.co.uk
 
Nicole Costa - Caregiver
Philadelphia, PA
Rakshasis77@aol.com
Janet Farias
Houston, TX
Butter796@aol.com
Terrie Linn Hall
Lexington, NC
tlh_tfsnc2002@yahoo.com
Jerilyn Jackson
Jay, ME
jerilyn@midmaine.com
Stephanie Jefferson
Cold Spring, KY
Sasksj@wmconnect.com
Nancy Kellner
Marshfield, WI
nancykellner@hotmail.com
Jackie Marston
Hellam, PA
Jackieisnowat@aol.com
James Martin
Newark, TX
harbarbm@aol.com
William McReynolds
Cleveland, OH
billmc4760@adelphia.net
Kathleen Rankin
Titusville, FL
rankink@hotmail.com
Gerry Rice
Richland, WA
2toteeoff@charter.net
Joe Somovery
Wantagh, NY
somovery@aol.com

 


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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