Internet Laryngectomee Support
My Story -
by Doris Littlefield
"You really should see an ENT man about that
hoarseness." That was my friendly doctor speaking to me at our farewell party
before we moved to Miami. "And," he continued, "the ENT you saw here in
Connecticut has now moved to Miami." We moved and there were a million things
to do. I probably would have put off seeing an ENT but for the fact that the
one ENT I knew and trusted had already moved to Miami and all I had to do was to
call his office. He had diagnosed "singer's nodes" for my hoarseness about a
year before this and I assumed it was happening again.
This time the ENT did a biopsy and it showed squamous cell carcinoma. This
sounded really bad and I opted to go to Sloan-Kettering in New York for a second
opinion on the diagnosis and treatment recommendation. This was 1966 and the
options were laryngectomy OR radiation. And radiation was available at two
places in Miami -- I wouldn't have to be in New York for the treatments. I
decided to have the radiation and, if that failed to work, then I would have the
surgery. I drove every day to Mt. Sinai hospital in Miami Beach. This was
still a fairly new treatment at the time, but it worked. I had no adverse side
effects and I continued to have regular examinations by my ENT through the
I had a long career as a museum curator and lecturer with a normal voice and
retired in 1996 as Chief Museum Curator and Assistant Director of Vizcaya Museum
and Gardens in Miami. During those years I also taught a course in the History
of Interior Design at the local Community College and lectured widely on the
decorative arts. These were wonderful years. Vizcaya was a beautiful place to
work; a modern re-creation of a Renaissance Italian Villa with formal gardens on
Biscayne Bay, it had been built as a winter home in 1916 by the International
Harvester industrialist, James Deering. Its 35 rooms are filled with the
furniture and decorative arts of the 16th to the early 19th centuries and open
to the public for viewing. It boasts a grotto swimming pool, gift shop and cafe
in the basement, along with the acres of authentically designed Italian-style
formal gardens complete with parterres, statuary, fountains and a garden house.
Vizcaya attracts thousands of annual visitors and keeps the small staff very
busy maintaining its beautiful appearance. There were many special events at
the Museum including the meeting of Pope John Paul and President Reagan, the
visit of Queen Elizabeth II, the Summit of the Americas and visits by many
notables and celebrities.
At age 71 I was ready to retire and set myself up as a museum consultant and
to continue my successful lecture circuit. Three years later, in 1999, that
telltale hoarseness came back and it was just 18 months after I had undergone an
ENT exam. This time a biopsy confirmed the cancer diagnosis that I had been
free of for 33 years. I was devastated, my post-retirement plans shattered. I
sought a second opinion at the Jacksonville, FL Mayo Clinic and then had to plan
on a total laryngectomy there by Dr. Bruce Pearson. The surgery was done and a
TEP was inserted, but trouble developed soon after I returned to Miami from the
hospital; the TEP was removed and I was back on the NG tube. Things got better,
but I was still quite depressed. About a year and a half after the surgery I
was able to have the TEP puncture redone at Mayo and an indwelling prosthesis
inserted. I overcame the depression and joined a support group.
About a year went by and I was disappointed to find that I was not going to
be able to effectively use the TEP beyond a scarcely acceptable level and I had
frequent leakage problems. In early August of this year I returned to Mayo to
have the puncture closed and an adjustment made to my stoma which had a tendency
towards stenosis. Although this has been somewhat of a setback, I am determined
to get on with my life and, at age 77, to enjoy as much as possible. I am
proficient at using my NuVois EL and I'm delighted that I've been asked to
present a lecture in January 2003.
(Editor's Note: Many laryngectomees share Doris' history of
radiation failing and having to have the larynx removed. But it is important to
note that, in her case, Doris got another 33 years from her vocal cords before
a recurrence forced their removal).
Doris can be reached at D2B12itt@aol.com
If you are one of many laryngectomees who are hypothyroid and take the drug
Levoxyl, you need to make sure you take it with plenty of water and that it does
not dissolve in your mouth. The reason is that the drug was recently
reformulated and it now dissolves more quickly than the previous "recipe."
The story of Levoxyl is an interesting one. King Pharmaceuticals, which
makes it, enjoyed a 130% increase in sales of Levoxyl in 2001 alone when it
achieved FDA (Food and Drug Administration) approval at a time when a best
selling rival, Synthroid, had not. The maker of Synthroid finally did apply for
King made the reformulation change in order to ensure greater
stability/consistency of the active ingredients. The FDA had stepped in
initially and required formal testing of this class of drug because of problems
with the consistency of the medication. This problem of consistency in strength
had been one of the problems plaguing the manufacturers of thyroid medications
made from animal sources. And stability issues subsequently
caused the FDA to
call for a nationwide recall of some batches of Levoxyl in the 50 and 100 mcg
sizes this past June because they were either too weak or too strong.
If we are taking Levoxyl we are advised to swallow it immediately with
plenty of water so that the pill does not dissolve in the mouth. And if you
have not been feeling well we are advised to check with the pharmacist to make
sure that we are not taking a batch which has been recalled, and consider seeing
our MDs to get our thyroid blood levels tested if we are taking the medication
as directed but still not feeling well. If you have a problem getting the pill
down without it dissolving too quickly another solution is to put the pill into
an empty gel capsule you can get in quantity at your pharmacy.
Green tea has again been in the news recently and touted for still more
potential medical benefits in preventing and treating a number of diseases.
According to legend, tea was discovered nearly 5000 years ago by Chinese
Emperor Shen Nung. According to the story, the Emperor ate several hundred
medicinal plants during his lifetime, but eventually died from a naturally
occurring poison. But he is venerated for having shown the value of many herbs
by turning himself into a guinea pig.
Green, black and oolong tea all come from the same evergreen shrub,
Canellia sinensis, but are prepared differently. Black tea is more commonly
drunk in Western countries while Asia prefers green. Black (sometimes called
brown) tea is fermented, while Chinese oolong is partially fermented. Green
tea, on the other hand, is steamed and roasted when dry to prevent
fermentation. This process preserves its natural color as well as natural
vitamins and other naturally occurring chemicals. Before green tea was enjoyed
for its taste it was often used for medicinal purposes.
Green tea (and to a lesser extent black tea) contains cancer-fighting
antioxidants, flavonoids as well as a number of other substances still being
analyzed. Antioxidants, also found in many vegetables, work by eliminating what
are called "free radicals" which accumulate in body tissues over the years.
They are blamed for damaging the DNA of cells and causing changes in them which
can become cancerous.
This past April a study was reported at the annual meeting of the American
Association for Cancer Research which shows significantly lower rates of
esophageal and gastric cancers among green tea drinkers. Other research has
indicated that drinking tea is good for the heart, in preventing a number of
other cancers, improving digestion and slowing the aging process. A
dermatologist at Case Western Reserve University believes that, not only can
green tea prevent cancer, but it can also slow its development if it already
exists by blocking the development of the blood vessels cancers need to grow.
While green tea can be taken in dried pill form, most people enjoy drinking
it, and the consumption of green tea in North
America has increased
significantly in recent years. On a worldwide basis, tea is the second most
popular beverage only following water. However, many trying green tea for the
first time think it is more bitter tasting than black tea; but, as with many
things, it is an acquired taste.
According to tea experts proper brewing is the key to a good cup of tea.
They recommend that water which has just been boiled should not be used, but
recommend letting it sit for a minute or two before use. Brewing for four
minutes will produce a beverage with only a third of the caffeine of black tea,
but if you want more caffeine you just need to brew it for a longer period of
As with all things, the whole scientific story on green tea has yet to be
told in its entirety, but the available research says that if you enjoy tea,
drink up. As one researcher at Rutgers University said, "It's not harmful, and
it may be beneficial."
Cisplatin and Epinephrine Gel Shows
Promise on SC Cancers
An injectable gel form of the cancer fighting drug cisplatin in combination
with epinephrine resulted in significant improvement for patients suffering from
squamous cell cancers of the head and neck, according to the results of a study
published in the August issue of The Archives of Otolaryngology Head and Neck
About 1/3 of the patients achieved significant benefits. Avenues for
further research include studying the effects of the injectable gel with other
therapies such as radiation, traditional chemotherapy and surgery as means of
preserving organs, including the larynx. The injectable gel also provides
another tool to use when radiation has already been used and cannot be used
The Singing Laryngectomee
People have said at various periods
in time "well, a laryngectomee would not be able to earn a living at a job
requiring a really good voice such as ...." But then we would seem to
eventually discover an exception to that rule in just about every occupation or
hobby mentioned. Larys play woodwind and brass instruments, are auctioneers,
pilots, teachers, preachers, receptionists,
telephone operators and sales
personnel. And we know that some laryngectomees who also played various musical
instruments professionally also sang accompaniment. But while we have still yet
to find a laryngectomee making his or her living by just singing professionally,
we continue to be inspired by larys who can stand up and belt out a tune.
And one inspirational example is Bob Foster of the United Kingdom. Bob has
been singing since he was in the Army during World War II. Concerning his
continuing to sing after becoming a laryngectomee he said, "as to what motivated
me, probably the fact that I was told after the operation I would never sing
again." But his wife and her brother were members of a band and "...after the
operation my brother-in-law gave me the microphone and told me to sing. So I
did. I sang Louis Armstrong's "Hello Dolly."
Bob auditioned for the Horace Stone Orchestra and got the job. The
orchestra plays primarily at clubs, dances and balls. Bob says "the
public's reaction is very favorable and we get regulars coming to hear us."
Laryngectomees are particularly inspired to hear a fellow laryngectomee sing.
Bob said, "That is always very rewarding, particularly when someone who
previously thought having the operation had ended their normal lives, but then
changes their minds to one of 'No, I'm going to win. I'm going to get better.'
Other Louis Armstrong tunes he enjoying singing include "Georgia" and "It's
a Wonderful World." Bob is particularly proud of his money-raising efforts on
behalf of his local club and support club, "Shout," of Romford, Great Britain.
(Thanks to WebWhispers member Tony Joynes for bringing this
story to our attention. Bob's story originally appeared in an article in the "Platon
Club News." Anthony and his wife Elizabeth traveled to the US a couple of times
in the last few years and had the opportunity to meet with a number of WWers
including Herb Simon of Maryland, and Wayne Baker and Elizabeth Finchem of
Both larys AND their friends need to exercise caution around water.
Photo by Judy Griewe
Judy can be reached at
Welcome New Members
We welcome the 24 new members who joined us during September 2002:
Little Valley, NY
Alvin (Earl) Chapman
Cheryl Conway - Caregiver
San Paulo, Brasil
Canyon Country, CA
Verdun, Quebec, Canada
Harold "Skip" Hartmann
Elmwood Park, NJ
Kathryn Nelson - Caregiver
Ft. Irwin, CA
Lisa Puetz - Caregiver
El Dorado Hills, CA
Dr. Dejan Rancic - ENT
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