HEADLINES
Kirklin Clinic Head & Neck Cancer
Support Group,
Birmingham, AL
distributed by American
Cancer Society
Pat
Sanders, Editor
June
2004
VA to expand service facilities in certain
areas.
Today, May 8th, the Birmingham News has headlines relating to an
announcement from the Veterans Administration. While most of the information in
our newspaper relates to VA changes and expansion in Alabama, this covers the
whole country and here is a quote from the Birmingham News:
“The changes are part of a modernization plan announced by VA Secretary
Anthony J. Principi. The modernization includes new hospitals in Orlando and Las
Vegas, 156 new community clinics, four new spinal cord injury centers, two blind
rehabilitation centers and expanded mental health outpatient services. The VA
also is closing three hospitals, in Pittsburgh; Brecksville, Ohio; and Gulfport,
Miss. “
Alabama is an example of what is happening: The VA already operates
outpatient clinics in Oxford, Huntsville, Madison, Dothan, Gadsden, Jasper and
Sheffield. Now, six new clinics will be opened in the following areas: Bessemer,
Childersburg, Opelika, Enterprise, Guntersville and Maxwell Air Force Base in
Montgomery. It will take up to 8 years to have them all operational but they
plan to have a basic primary care clinic in Bessemer by the end of this year and
have a megaclinic completed in three or four years. Huntsville is also slated
for a megaclinic enlarging on the one they have. Birmingham VA hospital will be
expanded as far as the space allows, and the two megaclinics should relieve some
of the use because they are being placed in areas where there are large
concentrations of veterans.
Looking at the news headlines from around the country, I see reports on this
from CA to VA and from FL to MN. Check to see what is planned for veterans in
your area.
Veterans Administration web site is
http://www.va.gov/ , look under Hot Topic – CARES Final Report. You will
then be at the CARES Home Page
http://www1.va.gov/cares/. Click on the section you want to see on the left
hand side or you can download the entire CARES Document in PDF format. Hope
this helps all of our veterans!
Pat Sanders
Sounds of a Servox
by Carolyn Chenault
Nine years ago a new sound came into
my life. I had no idea at the time that it would continue to follow me and
become a sound my heart would learn to listen for as my friend’s surgery changed
my life, too. Having spent the first week with her after she arrived home from
the hospital after her laryngectomy, I quickly became attuned to the sound of a
Servox as I tried hard to understand what she was saying and she endeavored to
learn to speak again. I have hearing aids in both ears and between us, we had
much to learn. There was a lot of repetition and frustration. The sound was
working its way into my mind even as I slept and it lingers forever in my head.
I find myself hearing it occasionally even years later. I always go looking for
the source.
I have found laryngectomees when least expected but my first encounter with this
newly learned sound was in the Atlanta airport during a long layover. While in
line to purchase a cup of coffee I heard that now familiar sound. Immediately I
turned my hearing aids up and started looking around – was that my friend I was
hearing? Surely not, I would know if she were traveling. A tall middle aged man
turned with a cup of coffee in hand and I saw his stoma cover. He walked away
and I stepped out of line and took off in hot pursuit. I felt I had to speak to
this man. When I caught up with him, I called, "Excuse me. Are you a
laryngectomee?" First he had a puzzled look quickly follow by a smile and his
eyes lit up like a ray of sunlight was reflecting in them. The Servox headed
for his neck for him to respond, "Yes, I am." His thoughts were written across
his face, "Who is this? Do I know her?” I explained to him I had a dear friend
who was a laryngectomee and I knew the sound of a Servox. We chatted briefly
then went our separate ways to different parts of the world we live in. As I
walked toward my departing gate my heart was happy that I had made the effort to
speak to this stranger. I hoped some stranger would do the same for my friend,
take a minute to speak and allow her to respond. Actually, I was as surprised as
he was. I had just chased a strange man in the Atlanta airport just to speak to
him and to let him know laryngectomees were dear to my heart. The smile that
appeared across the face of this total stranger was one I would experience a
number of times in the future.
Some months later, I was grocery shopping in the town where I live when a
gentleman strolled past me and I noted a familiar sight – dangling out of his
pocket was the gray cord just like the one my friend had on her Servox. I
remember the smile and the warm feeling I experienced when I spoke to the
laryngectomee in the airport. When the gentleman stopped at the meat counter I
approached – again the question came, "Excuse me, are you a laryngectomee?" He
whirled around with his hand bringing the Servox out of his pocket and up to his
throat area to respond. Again I saw that surprised look combined with the smile
as well as the eyes filled with sparkle. We had a nice friendly talk and I found
out he knew my friend. That gave us something in common.
While working as a Red Cross disaster volunteer in Tennessee following a
tornado, I had an encounter with not just one but two laryngectomees. We had
established a fixed feeding site at a building that housed donated clothes and
furniture where storm victims could come to get needed items. As our ERV
(emergency response vehicle) pulled into a parking area to offer free meals I
spotted two laryngectomees. These guys were volunteering at the warehouse site
to help their neighbors who were in need of clothes, grocery items and
furniture. One of these larys was a member of WebWhispers and knew my friend
through them. I visited with these two fellows often over the next three weeks
as we came back daily in the ERV. They were the only laryngectomees I had seen
smoking. Both men said they still just had to have a cigarette every now and
then. I had a depressed feeling each time I saw them light up. Interestingly, I
was still smoking at this time.
One day while sitting at my desk in the local Red Cross office, where I
volunteer regularly, I suddenly became aware of the sound of a Servox. I
realized the person using the Servox was not speaking clearly with it and the
folks in the office were having a difficult time understanding him. I stepped
out and introduced myself telling him I had a friend who was a laryngectomee and
I was accustomed to the sound. I also had difficulty understanding him but I
repeated the part that was clear and got him to slowly repeat the other part. It
was a good lesson for the ones in the office to listen and learn. He had wanted
to donate some cases of cans of liquid supplements and we were not allowed to
accept them but I could tell him where they would be welcomed. Turned out he too
knew my friend through a support group in Birmingham.
While shopping at a landscape nursery I again encountered the Servox sound. I
spoke to the fellow, introducing myself and again explaining I am familiar with
laryngectomees because of my friend. We had a nice time talking. We had two
common interests, one gardening and the second being that we cared about
laryngectomees. By this time, I had visited several times at the Kirklin
Support Group in Birmingham and had more than one lary friend. In my own town,
about 100 miles from Birmingham, I had picked up a donated Servox from a lady
whose husband had passed away, put a local lary on the prayer list at my church,
and made a call to a caregiver for a new lary to see if they needed anything. I
sat in the nursing home in the room of a 92 year old lady friend who had
recently had a laryngectomy. By that time, I knew more about stomas than the
attendants. For the fun part, I went with WebWhispers on the Alaska cruise and
have signed up for the Panama Canal cruise this year.
I am quite comfortable now introducing myself and telling another total
stranger that I have a friend, etc. etc. It also gives me the opportunity to
share the news of WebWhispers. And it is nice to meet a new friend who knows my
lary friend. What a small world indeed!! I will continue to listen for the sound
of the Servox and make every effort to speak to that person using it. Larys have
a special place in my heart. Right next to the one that belongs to my friend.
(Carolyn Chenault has been my friend for many years and
is the caregiver who came to stay with me the day I came home from the hospital
with tubes sticking out all over. She was with me for that first crucial week
and wrote an article for HeadLines about that in the October, 1997 issue. Pat
Sanders)
A DIFFERENT TYPE OF HERO
By Stan Mruk
In these days of world unrest, conflict and war, the word
“hero” seems to be getting quite a bit of use. In most cases it is justified in
describing the actions of our brave men and women in uniform but I’d like to
take a minute to talk about a different type of hero.
One that comes
to mind is a friend of mine named Sandra “Sami” Baiamonte. We laid Sami to rest
on Saturday. She was only 45 and had been a laryngectomee just two years. But
Sami packed a lot of living into those two years. She was a bubbly, cheery,
woman whose main concern seemed to be what she could do for others. She looked
forward to getting involved in our school program and our
laryngectomee-counseling program. When our support group met Sami and Matt, we
felt as if we had struck gold.
I met Sami and Matt when I was called in by the resident
SLP in one of our local hospitals because Sami was having a hard time using an
EL. The SLP, knowing that I was proficient, thought I might be able to help.
Because of scar tissue and other problems, Sami could not get good sound by
either intra oral or neck application. Remembering what I had seen at an IAL
convention, I tried to show Sami how to use the EL on the upper part of her
cheek. Almost instantly, she got the knack of it and was able to communicate.
Funny thing is that I can’t use an EL that way myself.
Anyway, with her new found voice, Sami and Matt immediately
got involved in our small but energetic lary club. She was looking forward to
getting involved in our school lecture program when cancer reared its ugly head
again and Sami found that she had a new tumor in the back of her brain. Though
disheartening at first, we were all relieved to find that they were able to beat
that tumor with surgery. Now Sami was really ready to start sharing with others
only to find that cancer had once again returned in her sinus passages. Despite
all the best efforts of the doctors, cancer would have its way this time and we
lost Sami. Throughout all her trials and hardship, throughout all the pain over
a very short period of time, Sami never lost her smile nor gave up hope. She
constantly remained a profile in courage and an inspiration to her friends and
family. If that doesn’t qualify as a hero, I don’t know what does.
But Sami isn’t alone. Sadly, every month we read about one
of our local or internet pals who have fought their final battle. Like Sami,
they keep smiling till the end. They are all heroes.
Also, we mustn’t forget those they leave behind. Matt gave
all our members renewed hope when at the viewing; he asked if he could still
stay involved with our group. Though it may hurt, Matt is willing to set aside
his own pain so that others may benefit. Again, Matt is just typical of the
many caregivers left behind.
So if there were a point to this piece of writing other
than to say a final good-by to a friend, it would be this. It hurts to lose our
friends, our heroes. It doesn’t matter whether they live near or far, whether
we see them regularly in person or have met only on occasion. Perhaps we simply
know them by the written word. We are truly a band of brothers and sisters and
when one hurts, we all hurt and when one rejoices, we all share in that joy. I
believe that someday when my turn to leave comes, I will join one of the
greatest reunions you could imagine, a reunion of laryngectomee heroes.
MEETINGS OF ALL TYPES
by Pat Sanders
While Carolyn writes of meeting and making friends with
strangers, Stan writes of saying goodbye to a friend but knowing that they will
meet again. I just had a different kind of meeting.
While in Waynesville, North Carolina, a few weeks ago, I
was invited by a new friend to attend a Kiwanis luncheon. I met and was warmly
greeted by many people and would guess there were probably 60 people in
attendance. The meeting started as lunch was finished and announcements were
made. They discussed an interesting new project they were funding for school
children relating to a training module operated by real firemen to help the kids
know what to do in the event of a fire. Neat project.
Then just as business was all taken care of, the
announcement came that the speaker had not been able to make it. My friend
leaned over, asked me, “Will you?” I nodded, and she jumped up to tell them she
had a substitute speaker. I could see the wary expression on the guy’s face
but…what could he do?
So I went up to the microphone and the first thing I said
was, “I have done some public speaking but there was a time when I did not know
if I would ever speak again.” I then told them about having cancer of the vocal
cords and explained what happens to us physically with laryngectomy surgery,
what it is like to have to learn to talk again and showed them the difference in
the Servox and my TEP voice. I concluded with the description of symptoms to
watch for and warnings of causative factors for cancer. Funny, people do not pay
much attention to the mention of smoking because they already know it, but when
acid reflux was mentioned, everyone looked startled and grabbed their bottle of
acid relief medicine!!
We had a number of questions and several people came up to
me afterward to talk about larynx cancer. It was fun, educational, and I think
they were happy that I was there. I know I was. It was a chance I couldn’t
turn down. There may have been someone there with a sore throat that wouldn’t
go away or another who will now give up smoking or tell his doctor about his bad
acid reflux. Each time we speak out, there may be just one less to join us.
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