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.