Internet Laryngectomee Support
November 2002
Internet Laryngectomee Support
November 2002
Making the Best of Life
by Carla Lynch
My story starts back in 1997 when I went to see my general practitioner.
I had been hoarse for several weeks. My throat was not sore and I didn't have
any other symptoms. That started a four-year-long saga of seeing ENT's, allergy
doctors, neurologists and speech therapists plus having three surgeries to
remove growths on my vocal cords.
After four years of chronic hoarseness, I went to Dallas to see another ENT
who specialized in the vocal cords. He used a laryngoscope and looked down my
throat. After seeing another growth, we decided that another surgery was
necessary. I had another microlaryngoscopy to remove the growth on my vocal
cord. It was an outpatient procedure and I returned to work on the following
Monday. The next day my doctor called me at work and told me that the pathology
report came back and said that I had invasive cancer of the vocal cord.
Needless to say, I was shocked and my doctor was also a bit surprised because I
have never smoked nor abused alcohol. I was just 37 years old.
I called my husband at work and told him the news and also told him that I
was going to go home for the rest of the day. I drove home in a daze. Shortly
after I got home, my husband arrived. He could tell that I was on the verge of
breaking down, so he gave me a big hug, told me that he loved me no matter
what, and said that together we would get through this. His positive attitude
gave me strength. He asked me what I wanted to do for the rest of the day
because he said we were not going to sit there and dwell on it. He had recently
joined a co-ed softball team and suggested that we go to the batting cages. I
decided that I was going to take my fears and overflowing emotions out on
softballs. Well, I got in the batting cage and hit about 80 softballs as hard
as I could. I felt much better being able to release my emotions in a positive
way. It was the start of my decision to fight this and to keep a positive
mental attitude. Instead of asking, “Why me?", I asked myself, “What am I going
to do about it?” It's amazing how powerful you feel once you've decided not to
be a victim and to choose to live life proactively.
Three weeks later I went to the hospital in Dallas, Texas, to have what was
originally scheduled to be a partial laryngectomy. It turned out to be worse
than the doctor expected, and he had to do a complete laryngectomy. He also
dissected 39 lymph nodes on the left side of my neck to check for cancer. I was
in the hospital for a week. I had done some research and went to the hospital
prepared. I took a Magna Doodle to write on because I could not talk. A great
friend of ours arranged for me to have a laptop computer to use while I was in
the hospital. That meant that I could send and receive e-mails and chat on the
computer. That was very encouraging and helped me not to feel so isolated since
I could not speak. My husband, Matt, who always makes me laugh, had me laughing
just a few days after surgery. He quickly gave me the new nickname, “Muttley.”
That's like Muttley, the dog who sniggered on the “Wacky Racers” cartoon,
because of the way I sound when I laugh. My husband and I worked out a way to
communicate on the telephone. One beep was “yes” and two beeps meant “no.” That
and text messaging on my cell phone helped me to keep in touch.
One afternoon while I was alone in my hospital room, my telephone rang. I
hesitated, but answered it. On the other end of the phone was a friend of my
husband's who had had her vocal cords removed 25 years earlier. She knew our
code. She spoke to me using esophageal speech, and we had a nice conversation
with me using my code. When I hung up the phone, tears of joy filled my eyes
because I knew I would be able to speak again. This was a great lift and it
helped to reinforce my positive mental attitude.
However, the greatest news came on my stepdaughter's birthday. My doctor
visited me and told me that the pathology report showed no positive margins and
no signs of cancer in my lymph nodes. That meant that he had got all of the
cancer and that I would not need radiation or chemotherapy. Although I still
faced lots of doctors' appointments over the next several years, I was elated!
After he left, I immediately got on the computer to send an e-mail to all of my
family and friends. I remember starting that e-mail with "I'm the happiest girl
in the whole U.S.A."
Two days later I was released from the hospital. My husband and I drove
home from Dallas on Saturday afternoon. I napped along the way, but when we
exited off of the interstate, I woke up. I thought I had seen a yellow sign
that had my name on it, but I didn't say or write a note to my husband to tell
him until I saw another sign, and I pointed it out to him. On the last few
miles of our trip home there were signs and balloons. There were signs and
balloons that said, “Welcome home, Carla” and “We love you, Carla.” The signs
appeared all along the roadway, and the final sign was in our front yard. My
cousin, who 14 years earlier had been in the hospital in Dallas for 52 days, had
made them. She had returned the welcome home that I had given her when she was
released from the hospital. I was very touched.
By the time we got home it was dinnertime. My husband asked, "What do you
want to eat?" He was a bit surprised when I said to call everyone and tell them
to meet us for dinner at a small Italian restaurant in the city where I work.
So, on the day that I got home from the hospital, I had dinner out with
approximately twenty family and friends. I haven't slowed down since. The next
weekend we kept our plans to go to Six Flags Over Texas with some friends. I
didn't ride anything, but went and enjoyed the shows and the company of friends.
Exactly one month to the day after having my surgery, I returned to work.
A week earlier I had seen my doctor for a follow-up visit and also saw a speech
pathologist to be fitted with a tracheo-esophageal prosthesis. On the same day
that I returned to work, I had my first speech therapy session to help me learn
to speak with my prosthesis. During that first session my speech pathologist
and I had a nice conversation. At the end of the hour she told me that I didn't
need to come back for therapy because I was speaking just fine. I was able to
carry on a conversation with her and she was able to understand everything that
I said. Within a week my husband jokingly told me to shut up, something I
hadn't heard him say in more than four years. We laughed, and I told him I was
making up for lost time.
I believe that attitude plays a huge part in recovering from cancer. If we
work to find some good in the bad things that happen to us then we have
something positive to focus on. That can make a big difference in the way that
we look at the challenges that we face. Focusing on the positive helps us to
survive the tough stuff, and we usually discover that we are a lot stronger and
more able to handle it than we ever imagined. A friend of mine who was visiting
from Washington, D.C., said something to me that stuck with me. She told me
that "We would rather have you with a hole in your neck than a hole in the
ground with you in it." And that is a unique, but great way of expressing the
fact that I'm still alive, which is much better than the alternative. Another
dear friend of my refers to the scar on my neck as my "lifeline," because I'm
still alive.
Cancer is never something that you want, but I can say the whole experience
has opened up a whole new world for me. I have made a lot of new friends. I
discovered that I can give other people hope and encouragement by having a
positive attitude. I have learned that I can face this terrifying disease with
dignity and courage, and that I am a better person because of it. I don't take
things for granted any more, and I have a new appreciation for life. I am
grateful for advances in medicine that not only allow me to be a cancer
survivor, but give me the ability to speak without vocal cords.
Carla and Matt live in Gladewater, Texas, and can be reached at:
clynch@cox-internet.com
Texas Laryngectomee Association becomes
Independent from Texas ACS
The Texas Laryngectomee
Association annual meeting which concluded In October in Austin will apparently
be the last sponsored by the Texas State unit of the American Cancer Society.
According to New TLA Chairman John Ulrich, "The State
Unit had a $2 million
dollar budgetary shortfall for the year and things are not looking better. So,
our being such a small subcommittee of the Patient Affairs committee we were on
the 'chopping block.' We have been expecting this to happen for several years,
but it was still a 'surprise' when it actually happened."
The TLA is looking into becoming a 501 (c) (3) tax-exempt organization so
that it can engage in tax-deductible fundraising. A strong State association
and vendor support should help in keeping the organization going, and local
Texas ACS units are expected to continue to support their local laryngectomee
clubs.
The separation of the two reminds some of the separation of the
International Association of Laryngectomees from the American Cancer Society.
One major difference is that the IAL/ACS split occurred more as a result from a
policy shift away from direct patient support than for economic reasons.
Smoking and Polyps Linked
Smoking has now been linked to the
development of colorectal polyps. And previous studies have shown that 75% of
colon cancers begin as polyps. The finding of the link between smoking and
polyps was reported at the October Annual Scientific Meeting of the American
College of Gastroenterology. Standard medical advice has been to begin
screenings of the colon and
lower digestive tract beginning at age 50. However,
the study suggests that smokers should be screened earlier.
Screening for polyps usually involves fecal blood tests and sigmoidoscopy
done in the doctor's office. A more extensive examination, the colonoscopy, may
be done in a hospital setting.
Colorectal cancer has been a recent focus of the American Cancer Society
and featured in ads starring "Polyp Man." The topic of polyps and colon cancer
was featured in this issue of the WWJ:
http://www.webwhispers.org/news/apr2002.htm
When All Else Fails, Duct It
If it were April you might think
it was an April Fools' joke. This was the recent news that duct tape can remove
warts. But the tip comes from no less prestigious a source than The Journal of
the American Medical Association's The Archives of Pediatrics and Adolescent
Medicine. It turns out that wearing a piece of duct tape over the wart
until it disappears is even more effective than freezing the wart in the
doctor's office. Still another use for duct tape!
Inserting the Prosthesis - The Gel Cap
Method
When clinicians (ear, nose and
throat specialist MDs and speech-language pathologists) insert the indwelling
type of prosthesis many use the gel cap approach. Basically, it collapses the
inner flange inside a gel cap. This eases the
process of inserting the
prosthesis into the puncture tract.
Many laryngectomees use the gel cap
insertion kit to install the kind of prosthesis you change yourself. The kit is
a prescription-only product, but vendors will sell and mail the product to
laryngectomees who have been given a prescription by their clinician.
The series of photos below shows the process.
Once the prosthesis is inserted the gel cap is confirmed as having dissolved and
the inner flange opened on the esophageal side. There are several ways this is
done. Some drink water to help the gel cap dissolve more quickly. Some squirt
water through the prosthesis with a flushing pipet or the pipet/syringe
combination (see "Modified Syringe...
http://www.webwhispers.org/pages/hints/tepspeech.htm). If water passes through it the gel cap has dissolved.
Another way to verify that the gel cap has dissolved and the flange is
fully open is to rotate the inserter with the prosthesis still attached. It
should rotate easily in the puncture tract if the gel cap has dissolved. If the
safety strap twists, then it has not.
Some laryngectomees have sought to
install their own indwelling prostheses. But this is not recommended because
the indwelling is designed to be installed by an experienced clinician. With
the indwelling, the safety strap is meant to be cut off. And cutting off the
safety strap removes a safety feature demanding that there be no question at all
that the gel cap has dissolved and the interior flange opened fully in the
proper position. Otherwise, there is a danger of the indwelling prosthesis
dislodging and dropping into the trachea, or even that the interior puncture
could grow closed if the prosthesis flange opened within the tract instead of
the esophageal wall. The danger is significant enough that the manufacturer
recommends that an x-ray confirm that the interior flange is fully opened before
cutting the safety strap.
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|
Ron Beasley Rogers, AR rbeasley1815@cox.com |
John & Carole Berger Scottsville, NY carolecb62@aol.com |
Curtis Cook Houston, TX Cook36@juno.com |
|
Michael Dougherty Bronxville, NY doc138@go.com |
Betty Hamilton Bonita Springs, FL bettyhamilton@fcconnections.com |
Connie Hudgeons - Caregiver Albuquerque, NM connie@handywerks.com |
|
Fred Kammerdiener Northpoint, PA fckamm@yahoo.com |
Fred Kehoe New Berlin, WI lazeeleprechaun@aol.com |
Edward Kessler Naples, FL ddagtm1@aol.com |
|
Bishop Duncan Mbogo Thika, Kenya, E. Africa Mbogofamily@wananchi.com |
Lois Mouat Altoona, FL mlodiev@aol.com |
Edward Munoz San Rafael, CA maro122@comcast.net |
|
Bill Newell Jacksonville Beach, FL whitedog4@prodigy.net |
Claire Overmyer - SLP Ooltewah, KY Claireover@aol.com |
Valeriu Paruschi Tulcea, Romania paruschi2002@yahoo.com |
|
Mark Schoener Joliet, IL mshane310@sbcglobal.net |
Doug Sharrar Knox, PA yabbadoo@csonline.net |
