Internet Laryngectomee Support
March 2003
Internet Laryngectomee Support
March 2003
The Country Lawyer - Jim Doby
He calls himself "the country
lawyer." While Jim Doby IS originally from the country (born in Georgia), he is
also a graduate of Harvard Law School. He's 84 and retired now, but you rarely
meet people a decade or two younger who have as much enthusiasm and love of
life. His immediate goal is to make it to age 90, but says 100 is not out of
the question.
Jim has lost a great deal to cancer. First he lost his wife, Gwen, in 1981
to breast cancer which had spread throughout her body. "She died at home in my
arms as I gave her a last kiss," he recalled. "I am sorry now that they put her
through chemo. All it did was cause her to lose all her hair. I think that
bothered her more than having cancer. I remember one day as I was giving Gwen a
sponge bath, she looked at me and said, 'Jim, how can you love me when I don't
have any hair?' I said, 'Honey, I have never told you this before because I was
afraid you would think I was perverted. But I have long been turned on sexually
by bald women. And right now you turn me on as much as ever.' She laughed and
said: 'You crazy horny Irishman. I love you so.'"
"Gwen had always said she wanted to buried next to her mother. After she
died I had her body cremated. When I talked to her father in Northampton,
Massachusetts (Gwen was a Yankee and I was a Southern boy [we ended the Civil
War when we married], I was told there was no room for a casket beside her
mother. But since she had been cremated and her ashes were in a small
container, the container could be buried just above her mother's casket, which
happened. So I like to think Gwen is in her mother's lap."
One of Jim's sons, Jamie, also had cancer. But his surgery was successful.
Jim had smoked two packs a day for decades, but finally quit "cold
turkey." Ironically, three months later his cancer was discovered. After his
laryngectomy in 1989 he began two months of radiation. He could only
communicate by writing or typing, so he devised a code to communicate with his
sons on the telephone using the Morse Code he had learned in the military during
World War II. He reports that it was not too satisfactory, and he ultimately
purchased an electronic larynx. He later learned traditional esophageal speech,
but ultimately obtained TEP speech, which he prefers.
Jim has always loved politics and international relations and can usually
be found glued to the Cable News Network or C-SPAN. A lover of progressive
causes, he was active during the Civil Rights era in the 1960s, and was an
antiwar activist during the Viet Nam war period. As Jim says, "Even though the
label 'liberal' is now in some quarters considered out of date (and even
subversive), I still proudly proclaim myself a liberal who voted for FDR (4
times), Truman, Stevenson, Johnson, Humphrey, McGovern, Clinton and Gore.
Speaking of voting, I am proudest of having voted against Richard Nixon FOUR
TIMES! I went to Washington with JFK, I marched right behind Martin Luther
King, Jr, and was there when he said ' I have a dream.' How is that for a
little white boy from Georgia?" No pacifist, Jim trained to be a fighter pilot
during World War II, and considers himself a "hawk" on war with Iraq. Never one
to hide his true feelings, he equates Saddam Hussein with Adolph Hitler.
Of his service during World War II, he said, "I entered pilot training in
April 1943. And became an officer and pilot in June 1944. I was selected for
special training as a fighter pilot, and was in New York on my way to Europe
when the war ended in Europe. Then I was moved around getting ready to go to
the Pacific, and was in San Francisco waiting to get on a plane to go to the
Pacific when Japan surrendered. I
figure the Germans and Japanese found out I
was on my way and decided to surrender."
"On being a laryngectomee (I like that word--sounds like a county or river
in Mississippi), I am glad I survive! And I am glad I lost only my voice.
I just had to learn to speak in a different way, which I did (even can now sing,
in one octave). After all, I had to learn to speak a little different when I
tried to modify my southern accent so Yankees could understand me."
Jim can be reached at
JimDoby@aol.com
Research Suggests not mixing Ibuprofen
with Aspirin
If you are among the
millions who take aspirin daily to help prevent heart attacks or strokes, a
recent study suggests that you should avoid using the over-the-counter pain
reliever ibuprofen at the same time. A study carried out in Scotland and
reported in the prestigious English medical journal, The Lancet,
concluded that individuals who use ibuprofen along with aspirin are at twice the
risk of death.
Ibuprofen is used to relieve the pain, inflammation (swelling), and
stiffness caused by arthritis. It also is used to reduce fever and to relieve
headaches, muscle aches, aches and pains from the common cold, backache, and
pain after surgery or dental work. Some common name brands for ibuprofen
include Advil, Genpril, Haltran, Medipren, Midol 200, Motrin, Nuprin and
PediaProfen.
According to the study, individuals who were prescribed both aspirin and
ibuprofen had twice the mortality risk and a 75 per cent increased risk of death
from cardiovascular disease compared with those prescribed aspirin alone.
Professor MacDonald, who conducted the study, reported that patients taking both
drugs also have an increased chance of bleeding from stomach ulcers. “Although
our findings are not conclusive, they do support the hypothesis that ibuprofen
may reduce the benefits of aspirin in people with cardiovascular disease.” He
concluded by saying, “Perhaps it would be prudent that such
patients...(take)...an alternative painkiller (to ibuprofen) at least until this
issue is further clarified.”
There is nothing in the article which suggests that those who are not
taking aspirin daily (or every other day) should avoid using ibuprofen for pain,
but to use something else if you are regularly taking aspirin to prevent heart
attack or stroke.
What's New in Larynx Cancer Research
and Treatment?
The American Cancer Society
recently distributed a document which summarized new areas of research and
treatment of cancers of the larynx and hypopharyngeal. Researchers are
continuing to look for the causes of these cancers and ways to prevent it, as
well as further improving treatments.
As we have previously learned, patients with head and neck cancers have
enjoyed the greatest decline in mortality rates for all cancers during the
period 1990-1997 (see "Summary of Head and Neck Cancers - Larynx Cancer" in
http://www.webwhispers.org/news/dec2002.htm), and
newer approaches to treatment are helping to avoid the laryngectomy surgery and
preserve larynges ("Surviving Stage 3 and 4 Head Neck Cancers" in
http://www.webwhispers.org/news/feb2003.htm). Some of the leading
edge research in understanding larynx cancer and how to prevent and treat it
include:
DNA Changes
A great deal of research is focused on understanding how
changes in the DNA of certain genes cause cells in the larynx to become
cancerous. One gene, whose location on one of the chromosomes has been
identified, is known to suppress tumors. Changes in this gene are linked to the
speed of the growth of cancers. Additional work with this gene may help to
detect cancers much earlier, and may help detect exactly how far the cancer has
grown (what is termed "the margins" of the tumor), as well as help determine if
the best treatment will be radiation or surgery.
Chemoprevention
Those who have had one cancer in the head and neck area are
prone to the development of second primaries (a new cancer unrelated to the
first one). (See "Survival of patients with second primary head/neck cancers"
in the January 2003 issue of the IAL News -
http://www.larynxlink.com/Main/newslett.htm). A
number of chemoprevention drugs are being tested to see if they can reduce the
risk of developing a second cancer. Some promising research is being done with
chemicals related to vitamin A to develop drugs which are effective and less
toxic than many of the drugs currently used in chemotherapy and prevention.
New Treatments
According to the ACS, "It is becoming clear that the
combination of radiation and chemotherapy is as effective as surgery and better
at preserving the ability to talk." In addition to continued studies on
radiation and chemotherapy approaches used together, other treatment research
involves the use of drugs which have been effective in treating other cancers
such as Taxol, docetaxel, and gemcitabine.
Still another avenue of research is ways to deliver the drugs (most of which
either kill the cancer cells or make them more vulnerable to being destroyed by
radiation). One study involves injecting drugs into the arteries feeding the
cancer, and another looks at injecting the drug directly into the tumor.
Another area of research involves a new drug called IMC-C225. It is
designed to deal with the fact that squamous cell cancers of the larynx (the
most common type of larynx cancer) have unusually high levels of growth factor
receptors. The drug blocks these receptors on the cancer cells and may "mark"
them as foreign bodies so the immune system can attack and kill them.
Finally, a number of studies are underway to use viruses to treat these
cancers. One is to inject a genetically engineered virus into a tumor which
will change the cancer cells into normal ones. And another special kind of
virus only attacks cells which show the kinds of abnormal gene changes seen in
cancer cells.
The understanding of the causes and prevention of larynx cancer and its
behavior and treatment are under continual study and revision. And as we talk
to those diagnosed with larynx cancer we need to try and make sure our
understanding of these issues does not end with our own personal histories and
experiences.
(The ACS posting which was the source of the above can be seen at
http://www.cancer.org/docroot/CRI/content/CRI_2_4_6X_Whats_new_in_Laryngeal_and_Hypopharyngeal_cancer_research_and_treatment_23.asp?sitearea=
New Product News
New Lary Tube
The British company Kapitex has recently entered the
laryngectomee tube market. Laryngectomee tubes are primarily used to
maintain
the stoma diameter. Those who have problems with shrinking of the stoma
(stenosis or microstoma) may wear the tube for varying periods of time during
the day and night.
The Kapitex Laryngectomy Tubes come in 20 different sizes including internal
diameters of 8, 10, 12, and 14. Lengths available are 20, 30, 40, 50, and 60
millimeters. Customizing service is also available. All edges of the Kapitex
product are smooth and rounded. As is the case with other tubes made of soft
silicone, this tube can be fenestrated (one or more holes punched in it) to
permit air to pass through the top of it. This allows the user to occlude or
cover the tube with a finger, thumb, or hands-free valve to facilitate TEP
speech. (Contact
http://www.kapitex.com).
Use an electronic artificial larynx
which utilizes 9 volt batteries? A new high tech battery charger is available
from Griffin Labs, and, while the new "Smart Charger" is far from cheap, it may
pay for itself in the long run.
The advantage of using 9 volt batteries has always been their availability.
Just pop into your neighborhood convenience or drug store to get a new one. But
major disadvantages have been much shorter battery life and, in the case of the
rechargeable ones, lengthy recharge times.
Most who use rechargeable batteries have discovered the benefits of the
nickel metal hydride type rechargeables. They can be recharged many more times
than the older types, and do not develop what is called "battery memory"
problems with the battery functioning for shorter and shorter periods of time due
to charging when the battery is not fully drained. A new development in nickel
metal hydride rechargeable batteries is higher capacity ones. The standard ones
are 150 mini-amps, but new high capacity types are now available in 200-280
mini-amps. This translates into significantly longer use times between charges.
The "Smart Battery Charger" can handle both the 150s and the high capacity
types, and charge them faster than older models. Two batteries can be charged
at the same time, and once charging is complete, the charger switches to a
"trickle" charge and flashes a green light. 150s can be recharged in about 4
hours, and the higher capacity ones take from 6-8 hours.
The charger is included with the purchase of the TruTone and SolaTone ALs,
or can be purchased separately for $165. (Contact
www.griffinlab.com).
Another New Lary Tube
Another new
entry into the laryngectomy tube market is the Singer Laryngectomy Tube designed
by Mark Singer, MD, and sold by Boston Medical Products. It features a wider
outer flange than other tubes, which is particularly helpful in period
following
surgery since it keeps tape and straps further away from the healing stoma. The
flange is also flat, which may help to occlude, or cover it with a finger or
thumb more easily. The larger outer flange may also help in keeping the tube in
place.
The Singer tube also comes is a wider range of sizes than most competitive
products. It is available in diameter sizes 8, 9, 10, 11, 12, 14, and 16. It
also comes in four different lengths--18 millimeter, 27 mm, 36 mm, and 55 mm.
This later feature should reduce the number of laryngectomees who have to cut
down the larger sizes available in competing products. It includes an
adjustable neck strap and sells for $48 by prescription. (Contact
www.bosmed.com).
|
based on an idea submitted by John Haedler Marti can be reached at mfsampson2@yahoo.com |
Welcome New Members
We welcome the 18 new members who joined us during
February 2003:
|
Linda Addis-Hinske Cleveland Heights, OH Panda13805@aol.com |
Roy Baker Nr. Goole, Yorkshire, UK roy@baker561.fsnet.co.uk |
Diana Bavusa Philadelphia, PA Blueeyedgirl605@aol.com |
|
Herb Boeke Richmond, BC, Canada h.boeke@shaw.ca |
Richard Bone Bonaire GA Boneink@aol.com |
Cindy Brezinski Washington, PA cindyb706@hotmail.com |
|
Rachael (DeGroff) Kammer - SLP Madison, WI kammer@surgery.wisc.edu |
Olivia Gillespie Houston, TX ojimgill@earthlink.net |
Christine Kloeppel - Caregiver Chandler, AZ christinesk@cox.net |
|
Dottie Lake - Caregiver Pottstown, PA sxiblndfx56@yahoo.com |
Joseph E. Maxwell Malden, MA joemaxwell.1@juno.com |
Edward McDevitt Hull, MA ComanderMcD@netscape.com |
|
John McMahon, Jr. Clearwater, FL jmcmahon@ij.net |
Richard Morgan Warren, OH rmorgan8@neo.rr.com |
Jim Rice The Villages, FL eagle1939@comcast.net |
|
Bonnie Rutherford Fitzgerald, GA bonnie4064@yahoo.com |
Kent Smith Kailua-Kona, HI kj_kona_@webtv.net |
Keith Tuttle Minneapolis, MN kdtuttle1@netzero.net |
