August 2010

 


 

 

Name Of Column Author Title Article Type
News Views Pat Sanders Pile-It Award News & Events
VoicePoints Muriel Thompson Support Education-Med
Guest Columnist Coty Avedician Cyberknife Treatment Experience
Between Friends Donna McGary The New Normal Commentary
Practically Speaking Elizabeth Finchem Gone Fishin’ Lately? Education 
My Neck Of The Woods Nancy C Blair MS, CCC-SLP I Married One Experience
The Speechless Poet Len A.Hynds Country Inn & The Phoenix Prose & Poetry
Tidbits Phillippines Emer Rojas Award News & Events
Editor's Mailbox Patricia Neck Exercises Experience
Editor's Mailbox Lorents Gran Candida Experience
New Members Listing Welcome News & Events

 

 

 

 

PILE-IT AWARD


THERE’S AN OLD JOKE ABOUT A CIRCUS EMPLOYEE WHOSE ONE JOB WAS TO FOLLOW THE ELEPHANTS AROUND, AND SWEEP UP THE MOUNTAIN OF MANURE THEY DROPPED BEHIND THEM. A FRIEND SAID TO THE WORKER, “GOD, THAT’S A THANKLESS, AWFUL JOB. WHY DON’T YOU QUIT? THE WORKER REPLIED: “WHAT? AND LEAVE SHOW BUSINESS?”

LET’S FACE IT: WHEN YOU’RE DEALING WITH CRAP ON A DAILY BASIS, YOU GOTTA HAVE THE RIGHT ATTITUDE. AND, PAT, YOU HAVE AN AMAZING TALENT FOR TAKING ALL THE CRAP THAT’S FLUNG AROUND ON THE MAIL-LIST AND IN THE FORUM, SCOOPING IT UP, AND SWEEPING IT AWAY. AND YOU DO IT WITH HUMOR AND WITHOUT COMPLAINT.

WE DECIDED THIS PRODIGIOUS FEAT SHOULD NOT GO UNNOTICED. ANYONE WHO PERFORMS SUCH A VALUABLE TASK FOR OUR MEMBERS NEEDS A LITTLE ASSISTANCE. SO WE ARE PRESENTING YOU WITH THE 2010 WEBWHISPERS PILE-IT AWARD. SO NAMED NOT ONLY BECAUSE YOU CAN PILE IT WITH THE BEST OF THEM, BUT ALSO BECAUSE YOU ARE THE PILOT WITH THE LEADERSHIP SKILLS TO FLY US OVER AND AROUND THE MOUNTAIN OF CRAP THAT PILES UP ON A DAILY BASIS.

THE GREAT AMERICAN PLAYWRIGHT, THORNTON WILDER, ONCE WROTE THAT MONEY IS LIKE MANURE. IT’S NO GOOD UNLESS YOU SPREAD IT AROUND, HELPING LITTLE THINGS TO GROW. PAT, THANKS FOR BEING OUR OWN WEBWHISPERS GARDENER - TAKING ALL THE CRAP THAT’S FLUNG AT YOU, AND USING IT TO HELP OUR COMMUNITY TO GROW.

LADIES AND GENTLEMEN: PAT SANDERS, RECIPIENT OF THE 2010 WEBWHISPERS PILE-IT AWARD

 

 

 

Enjoy,
Pat W Sanders
WebWhispers President
 

 

 

VoicePoints written by professionals 

Coordinated by Meaghan Kane Benjamin, M.A., CCC-SLP

 

                                         meaghan.benjamin@mac.com  

                 

 


Support: What Is Enough and How Do I Get It?

 

We read it everywhere today, "Support is extremely important in the healing process." Studies show patients attending support groups are coping better and living longer! Doctors are learning to question their patients about available support—who is there to help you? How do we know what’s enough support and what’s not? And how do we go about increasing our current support or finding resources for building our support for the first time?

We can begin by asking ourselves some basic questions:

1. Who is it I turn to when I need accurate feedback - the people in my life from whom I can hear positive, negative, and constructive feedback?
2. Who is there to affirm me - only giving me positives?
3. Who is it in my life I can turn to when I’m overwhelmed - who is able to help me regain my balance?
4. Who is it I can share my secrets with - who will keep them safe?
5. Who stimulates and challenges me - spiritually, mentally, and physically?
6. Who are the other people in my life - ones could help fulfill the above needs for me?
7. Finally, we ask ourselves- who looks to me to meet these needs for them?

These questions can help us begin to identify our personal support system or where to begin in building support. Some will find they are meeting these needs for others, but have no one who meets these needs for themselves. This can help us understand why our tank is on “empty”—we’ve been receiving “0” and giving out 100%! So it’s a good time to refuel and to become a “receiver”, possibly for the first time in a looooong time!

Sometimes as we answer these questions we may identify we are looking to only one or two people in our lives to meet all our needs. Wow! No wonder some caregivers are so overwhelmed!! This is where question #6 comes in to help us—many times we are surrounded by friends and relatives who want to help us. We may be essentially starving in a sea of plenty!

Some may find these questions helpful in beginning to “name” needs. If we come up empty in response to the questions, then we can keep these questions handy and begin to think about what our needs are and why are they important? We can look back in our lives and remember the people who have been there for us in the past. It can be a starting place in building support.

We all have the basic need to have “meaningful work” or a “sense of purpose”. This is where question #7 can be helpful. The role you definitely didn’t choose, that of being a cancer patient, can sometimes throw a blanket over your other roles. So it can be extremely important to take time to acknowledge whose needs you are meeting and how. The answers can help us know when we’re overextended or maybe when we want to seek resources for increasing our giving.

The ways to increase our incoming support are numerous and the resources many. The answers will be different for each person. Some people benefit greatly from a local support group while others benefit most from individual support. If you find you want some assistance with your support system, there are social workers, clergy, and counselors who can help you identify the resources most helpful for you. The important step is to act! Unmet needs lead to increased stress and both lead to decreased health and healing. Answering the questions and checking the list of resources will be a good starting place for giving and getting the help you deserve!

Support Resources: American Cancer Society, Cancer Cares, Volunteer Centers usually through your local United Way.

Article written by Muriel Thompson who is a clinical social worker in private practice in the Birmingham, AL area, providing counseling services for patients and their family members.
Reprinted from HeadLines, August, 2002:

http://webwhispers.org/Headlines/Headlines_aug02.asp
 

 


 

 

Cyberknife Treatment (during September 2009)

Coty Avedician
Pelham, AL


My trip to the Cyberknife started a long nine years ago when I was diagnosed with stage 3 breast cancer. Since then, I have had a mastectomy, breast reconstruction, fluid removed from my lung, gamma knife on my brain, a craniotomy, and over 120 chemotherapy treatments.

In November 2007, I had started chemotherapy again with Xeloda to treat tumors in both lungs but stopped it when I broke my right wrist after falling in March 2008. Then, they used Tykerb, which managed to keep my tumors stable for 12 months but , then, Herceptin was added when the tumors started growing slowly again. At this point the tumor in my upper left lung was 2 cm and the tumor in my lower left lung was over 3 cm. In April 2009, I went to the emergency room because of severe back pain and numbness in my left arm and leg. They ran all the tests they could think of over a period of 4 days but could not determine what was causing the pain or the arm and leg numbness. While I was in the hospital I talked to the neurologist’s assistant and asked her if the tumors in my lungs could be treated with the Cyberknife. She thought I was a good candidate, so I set up an appointment with the neurologist, who confirmed that the large tumors in my left lung could be treated with the Cyberknife. He scheduled physical therapy to try relieving some of the back pain which I believed was being caused by the two large tumors in my left lung. The neurologist scheduled an appointment with the pulmonologist to discuss the treatment with the Cyberknife. He agreed I was a good candidate, but that he would have to discuss my case with the Cyberknife team.

After a visit with the radiation oncologist, I was told they were going to treat those two large tumors with the Cyberknife and that they had to insert fiducials (small gold seeds) in both tumors so the Cyberknife could track them. End of July, the radiologist at the hospital placed three gold fiducial markers in the two tumors. Before he began, I was injected with Demerol and phenagran through an IV so I slept through most of the procedure. He place one fiducial in the upper left 2 cm tumor. He placed 2 fiducials in the lower 3 cm tumor. When he placed the last fiducial, the lung around it collapsed and exposed part of the fiducial. The Dr. said the exposed fiducial could fall out. We left the hospital the same afternoon. I noticed that the pain I felt from the lower needle puncture was in the same area where I have had pain during the last several months. I felt some soreness for several days after the procedure. Five days later, I had severe back pain in the area of the lower needle puncture, and the pain was so bad I could not get out of bed. By the next day the pain had subsided.

One week after the fiducial placements, I went to the radiation oncologist’s office for the planning CT, vest fitting, and the body mold. The vest is made of a spandex material and is skin tight but very comfortable. The making of the body mold is painless and is for keeping you in the same position for all the treatments. They put an IV in my arm for the contrast injection and did the planning CT. The CT showed one fiducial in each tumor, confirming that one of the fiducial markers in the lower tumor had fallen out. I think the severe pain I felt a few days earlier was caused by that. I received a call from the radiation oncologist’s office and was informed the treatments were planned for August 18-20.

The planned treatment start date was 11 days from the date the CT was done. I was concerned that both tumors were going to be treated on the same day, so I talked to radiation oncologist to find out what the treatment plan was. She said they planned on treating both tumors on the same day but that I would have a rest break between the two treatments. On August 18, I went to the Cyberknife facility ready to kill the two tumors. My premeds were decadron and ativan.

I mentioned my discussion with the radiation oncologist about a break between the treatments of the two tumors to the cyberknife operator. He said it would take only 30 minutes to treat the upper tumor and he felt a break wasn’t necessary. He said it would take 45 minutes to treat the lower tumor. After laying on the Cyberknife table for an uncomfortable and disappointing three hours the radiation oncologist informed me they could not get the Cyberknife to work so I was rescheduled for two weeks later. I got to the hospital at 10 that morning, ready to get this done. After a wait of one hour, while they tested the Cyberknife they took me in.

The treatment of the two tumors took 2 ½ hours and it was very difficult to lie still for that long. I watched the Cyberknife move around me as it did its work. A few times the arm startled me when it came very close to my face. On the second day the treatment lasted 2 hours but that was still too long. I arrived for the 3rd and final treatment at 10 a.m. and 2 hours later I was done. I recommend that anyone doing the Cyberknife insist that they be given a break if the treatment is to last more than an hour. The treatment itself is not painful but laying flat on the Cyberknife table for 2 ½ hours is a challenge. I felt fatigue and had headaches for three weeks after the treatment.

By the second week, my back pain started to subside. By the third week, the pain was almost all gone. I did a CT in October and was very happy to find out that the larger lower left lung tumor had shrunk by 40% and that the left lung upper tumor decreased slightly. Hopefully, they will keep shrinking until they are gone.

The Cyberknife treatment is well worth the discomfort and waiting but is not as easy as I thought it would be.

 

Editor's note:  I have known Coty since early in her treatment. I have never known her to come into a meeting without a smile, even when we knew how bad her pain was.  Seven of us had lunch last week and discussed a problem of her changing chemo.....again.

Pat Sanders

 

 

 

 

 

The New Normal

 

I am sure you have all heard some variation of “pink is the new purple”…it is ubiquitous to the point of meaningless now. However at one point, 60 became the new 40, which I have to admit I found a bit reassuring, having long past one and bearing down hard on the second. As the mother of 30-somethings, I must say it appears to me that 30 may be the new 17…are these kids EVER going to grow up? Of course, I would have to be a complete idiot not to realize that my 85 year old parents (the new 70, perhaps?!) frequently wonder the same thing about me. As Florida Scott Maxwell (1883-1979 American playwright, author, and psychologist) wrote, “No matter how old a mother is, she watches her middle-aged children for signs of improvement”.

Western cultures, and Americans, in particular, seem a bit conflicted about this very human battle between independence and community. We strive to be unique yet we need to belong. We want to be different but not abnormal. Saying “60 is the new 40” is a quintessential example of this dilemma. On the one hand we are rejecting the notion of traditional age related definitions and on the other embracing them. I can practically guarantee you a 30 year old hot shot advertising account exec. didn’t coin THAT phrase. That came when someone looked in the mirror one morning and saw his father (or her mother) and said, “Oh no, you don’t!” The same person probably came up with “Not your father’s Buick”. It would be quite comical if it weren’t quite so real.

As the nanny/granny of a toddler, I have spent a fair amount of time lately online, getting back up to speed on such pressing issues as finicky eaters, temper tantrums, nap schedules, setting limits, and how much Curious George and Yo Gabba Gabba is too much, even on days when the aforementioned are problematic. I am struck by how so many of the sites repeatedly stress that each child is different, saying these are only guidelines and you know your child best. They give a range of expected behaviors and skill sets for each age and when to seek help when your child is outside of this range. They often make the distinction between normal and average.

For the rest of our lives we will struggle with those distinctions. Everyone wants to be above average but still normal. It ain’t gonna happen, no matter how much your mother loves you. There is no “Lake Wobegon, where all the women are strong, all the men are good-looking, and all the children are above average”. [Garrison Keillor].

The last few years of my journey (currently mile 57) have seen a lot of mishaps. Friends and family run off the road by illness and tragedy. Explaining to old friends, getting reconnected via Facebook, that things have changed beyond the blond to white hair and 30 pounds. I have learned that I am not alone. No one else has a hole in her neck, but several have lost other body parts to cancer, some have deeply troubled children or siblings, others care for parents with debilitating illness and dementia. None of us have escaped the consequences of middle age.

Last week, my oldest friend (we met the summer between kindergarten and first grade when my family moved to her neighborhood) came over with her brood of grandchildren for a day in the pool. I had never met them since she & I only just recently reconnected. She told me later the 7 year old announced on the way home, “You know, Nunna, that Nana was nice. It doesn’t matter that she has that thing in her neck or she talks funny, she is way cool.” I consider that high praise.

So, I propose this - WE are the new normal. At this point, if you don’t show some signs of wear and tear, you simply haven’t been living long enough. Do you remember that scene in “Jaws” where the characters proudly compared their scars? A life well lived is like that. It will beat you up, spit you out and you will not escape unscathed, but the stories we will tell are the stuff of legend.

Life does not accommodate you, it shatters you. It is meant to, and it couldn't do it better. Every seed destroys its container or else there would be no fruition.

Florida Scott Maxwell
 

 

 

 

 

Gone Fishin’ Lately?


The easy way to excuse myself while away on vacation would be to hang the “Gone Fishin’” sign on the door knob as I have in the past. Instead, this time I would like to share with you some of the special things that happened while I was on the road for over a month.
The plan to attend the IAL Annual Meeting and Voice Institute began a year ago when the location was announced. Clarksville, IN is close enough to S. W. Michigan for me to spend a few weeks following the meeting with family and friends in the area. This year’s IAL was a great way to kick off my fun packed vacation with old and new friends. Despite the hot humid weather we enjoyed our work and all the receptions and dinners. Receiving the WW Award, “In appreciation of your Outstanding Efforts in setting up a regular chat for Online Classes teaching Esophageal Speech”, was a very nice surprise. The WW cap I was given, along with the beautiful Award for framing, came in handy for my fishing and the many outings family and friends planned for me. More on this will follow.


The opportunity to teach laryngectomees and grad students esophageal speech methods and tricks is always a joy for me. We had some of those same folks observe the fun we have in the pool helping laryngectomees learn to manage safely in the water again.


There must be some photos around of the “Churchill Downs” hat I purchased especially for our day at the races there. It was big and black with white trim on a sassy brim with one smart pleat. Someone asked me “Is that hat hot”? I agreed by saying, “Yes, it IS HOT!”
The next big event for me was the Delegate’s Meeting and my nomination from the floor for a seat on the BOD by Ron Langseth. I was elected to a one-year term that will allow me to continue my volunteer work on a few Standing Committees as a BOD member.


The IAL Banquet & Dance was truly outstanding. Those of us that love to dance enjoyed the music provided by Tony Talmich, and “Elvis”. Another surprise was in store for me during the Auction break to raise a little money for the Voice Institute. Bob Herbst won the bid for the floating chair we had used in the pool. Then he walked across the dance floor and placed the box in my lap as a gift. He said he knew I had wanted one for a few years. With such a generous gift, I now have my own front-entry floating chair with a fisherman’s measure in plain sight. Thanks again, Bob, for your generosity.


The time I spent in Kalamazoo with my youngest daughter and her family was special due to my 5 yr. old grandson’s antics. He is a fantastic swimmer for a little boy. His claim to fame is diving in from the edge into the deep end and swimming across without his “cube”. He swims everyday either at the “Y” or in their condo pool. Of course, Gramma had to go swimming with him. Such fun.


My next stop was a visit with my youngest son and his wife who live ¼ mile from Lake Michigan. They took me to Meijer Gardens in Grand Rapids to see the Dale Chihuly glass sculptures. There were over a dozen that are stunningly placed in the atrium and outdoor settings. This son loves to cook and he prepared two outstanding dinners for friends and his in-laws so they could get to know me. He also loves to fish and hunt. The three of us went fishing twice on Spring Lake in their camouflaged flat-bottom boat. We caught enough fish to have one really good brunch of home fries and fish before I left their home. Too bad I just missed meeting their new dog.


It was on to my oldest daughter’s to watch the World Cup, and take in their daily routine of swim practice for my youngest granddaughter. She is preparing for the high school swim team. We went to their lake house on Canadian Lakes for the long 4th of July weekend. They have a pontoon that we enjoyed with their lake neighbors before I returned to Kalamazoo. Again I stayed at my youngest daughter’s home for the next week. I was able to get out for lunch with a few of my long time friends in the area. Among our daytime family outings we went to the Kalamazoo Nature Center and then Binder Zoo in Battle Creek to feed the giraffes and ride the train and tram around the vast acreage. I know I walked many miles during our several 3-4 hour outings. Compared to the desert, I really enjoyed hiking again in the very green woods.


For the final week on the road, my youngest daughter and family drove me to S. Bend, IN to stay with friends who planned to get me to Midway for my flight home. Since they had all met many times before, they took my friends and I to a lovely restaurant for a superb lunch. Walleye Pike, of course. During my stay in S. Bend we attended the Krasl Art Fair in St. Joseph, MI, and toured Copshaholm; the family mansion and museum of the Oliver plow and tractor company in S. Bend. My time with these friends always involves gardening (planting perennials), jazz club/dinners, and lunch followed by shopping the boutiques. Tada! I found my gown for next year’s IAL Banquet & Dance…way in the back of the boutique on the 50% off rack.


I’m already planning to start traveling north a little earlier next year for another granddaughter’s commencement from Kalamazoo Central High School in early June. (They had President Obama deliver the Commencement address this year because their school won the National Essay Contest.) This family event will take place just before the IAL AM/VI. I hope to see some of you in Kansas City, MO next June. I may have more “fish stories” to share, along with tales of all the wonderful places I’ve visited between now and then.


Elizabeth Finchem
Tucson, AZ


p.s. I am now a Great Grandmother of a sweet baby girl, Alicia

     
 

 

 


 

“I Married One!”

Nancy C Blair MS, CCC-SLP

 

 

 

“I married one!”   It’s an inside joke and an old one at that.  The story behind it is that in a rap session the wife of a new laryngectomee who was struggling to cope listened intently as another member introduced herself and added that she married her husband after his laryngectomy. The struggling spouse exclaimed, “You married one!”  

 

Now I have joined that group not only as the facilitator but as one of the spouses.  I married one and learned the practical side of  life with a person who breathes through his neck, speaks with a prosthesis, swallows a little slowly and occasionally becomes perturbed that life is not quite as easy as it used to be.  I’ve also been enriched by the opportunity to look at everyday events from a new perspective.  I did miss the most devastating features of Charlie’s throat cancer.  I did not suffer the trauma of my husband having a life-threatening diagnosis.  I did not sit in a waiting room unsure of whether or not I would ever have him again. I did not lose the dreams and plans that couples make or just expect from life together.  I know these fears and losses because after a few years together he had quadruple bypass surgery after a minimal stroke.  He recovered completely and is better than ever! 

 

Charlie impressed me from the moment I met him standing outside one of our meeting rooms at the Florida Laryngectomee Association Annual Meeting.  He pretended to have questions about his prosthesis and I pretended to only be interested in how he could best communicate.  A courtship of several months followed and then a wedding.  He was a sneaky fellow who seduced me with unimagined intimacy.  Dancing with him turned into sharing not only the rhythm of his step but the vibration of his voice rumbling in his chest.  He was clever enough to take my hand and hold it in his as he covered his stoma to speak with his prosthesis. The effect was electric!  There are songs and poems written about sharing the beating of hearts but I found it more intimate to share the vibrations of his voice.  We incorporated that unique experience into our wedding vows.  He held my hand in his as he covered his stoma to recite “I Charles…….do take thee….”

 

Now I share the nitty-gritty, day-to-day concessions required by someone who has to eat slowly and needs a lot of liquid to push the food along.  The table is always set with a large glass for water or iced tea and the pitcher is nearby. Snacking at the fair or sampling at the grocery store has to be avoided unless there is a drinking fountain or bottled water nearby.  When Charlie decides to forget the whole business and just take the offered sample of fajita he walks around chewing during the entire shopping trip!  The server in the restaurant is tipped according to how empty the water glass stands and for how long.  Attention has to be given to the selection of food.  Only extremely tender steak is acceptable. Seating is arranged at dinner so Charlie is in the midst of the group where he can be heard but with a close enough exit in case he needs a major cough!  Meals last longer.  So long that sometimes I read part of the newspaper or begin some clean up while Charlie finishes.  The conversation is largely up to me when we are out with friends unless Charlie has had time to swallow thoroughly, avoid a gurgle and jump into the conversation before the topic changes. These are all small annoyances.  He eats almost anything he wants and never opts out of a dinner engagement.  That’s a blessing because it could have been different.

 

That loud, strong voice with the animated Charlie behind it just does not carry in noise or out of doors.  I am the one who steps up at the ballgame and orders the hotdogs and beer.  I lean across the driver to order at the drive-thru window and yet again take the lead in talking through the window at the ticket counter.  But at times we let the listener puzzle for a moment.  Some people seem to assume they will not understand Charlie and look to me to interpret!  No.  That doesn’t work.  I’m silent and they have to turn to him and quickly realize his voice is easy to understand and that he makes a lot of sense.  I’m allowed a few pet peeves and here is one.  Charlie defers telephone conversations to me because he thinks he will be hard to understand but he stands in the background and tells me what to say!  Funny thing is that his voice is so loud and clear that the listener hears him say “tell him…..”.  I end up holding the phone while Charlie talks a few feet away and then I tell him what the other speaker says.  Now that is just crazy!

 

We also have the territory issue.  The bathroom, bathroom closets and dressing area should be mine.  That is not even questionable.  But Charlie has all this stuff!  Stoma covers, extra prosthesis, magnifying mirrors, long tweezers, hands-free valves, stoma buttons, stuff to clean everything,  Alcohol pads, adhesives, hydrogen peroxide, suction machine (you never know!), spare artificial larynx, batteries, “how to” pamphlets, prosthesis changing kit, samples of every stoma cover available and extras of all the above.  Our cupboards are full of his things.  This was the most unkind cut of all!   Even the linen closet took on the laryngectomee look.  Charlie has stacks of white washcloths and hand towels so he can wipe his neck, dump it in his designated dirty towel receptacle and not worry about me picking up the towel to dry my hands or face and finding a less than inviting surprise.   The white allows for bleaching. This arrangement also makes me happy.  I do have extra duty cleaning the mirrors where an unexpected cough spreads farther than he has thought and sometimes the handles of the sink where wiping his stoma has transferred from his hands-yuck!  

 

I have forgotten many times that Charlie lives with different requirements for breathing and speaking.  That loud, shrill cough first thing in the morning is always shocking.  My first reaction is alarm. I don’t immediately recall that he has no way to muffle it- that the sound is “normal”.  I’ve been known to be offended when he goes silent during a phone conversation only to discover that he had a momentary lapse of voice for one of several legitimate reasons.  I still have not learned to ask anything other than “yes or no” questions when his hands are occupied with tools, dirty while working in the garden, covered with chemicals while spraying the lawn or warding off our playful puppy.  I’m surprised when the clerks at our local stores recognize him.  He doesn’t spend that much time shopping!  It only occurs to me later that his manner of talking makes him memorable.

 

Charlie has not forgotten that he is a laryngectomee.  He has adapted to the changes.  He absolutely never complains about any part of it except the neck dissection and radiation that left him with a tight and sometimes painful neck.  He only regrets that he cannot participate in “small talk”.  He can’t seem to get into a conversation quickly enough.  The slight delay in voicing allows others to jump in ahead of him. He does think he would have bought a boat and still might have if I could have survived the fear of him being on the water!  He does swim with his thumb plugging his stoma but water sports have never been very important to him so that is not much of a loss.   He blows bubbles for the grandkids by holding the bubble wand in front of his stoma—a real treat for all of us!  The little ones have each in turn tried to talk like grandpa by putting their fingers on their necks and growling out a few words.  We use sign language in our family and Charlie’s name sign is an index finger to the throat.

 

I know a lot about rehabilitation for persons who have had their larynx removed.  I know about stoma care, prostheses, amplification, stoma buttons, artificial larynges, and breathing, modified telephones, swallowing problems and I know the myriad variations of each.  Now I am learning what they mean to the person who lives with them.

 

The fact that Charlie doesn’t have a larynx doesn’t count for much.  It is just one of those things that is particular to my husband.  The laryngectomy does not define the person.  The person defines the laryngectomee.   I won in all respects when  “I married one”. 

 

Nancy C Blair MS, CCC-SLP works as a Speech-Language Pathologist for the Barrett Outpatient Rehabilitation and Sports Medicine Clinic of Morton Plant Hospital in Clearwater, FL.  Her BS is from Purdue University and MS is from University of South Florida.  She has worked with “FLA” for 20 years.

 

 

 

 


 

My once sleepy old town of Ashford, is growing so fast, and I guess in twenty or thirty years’ time will develop into a city, but I think a city without a heart. It was originally just a point on the map where a Roman Road forded the small river Stour, a ford by the Ash Tree, which became a Saxon settlement in the goodness of time. We are now a major train junction, and the last stopping place before the line dives underground, crossing beneath the English Channel, and emerging in France.


I have long thought that very few people have written about Ashford, its history and its characters, and things that give a place a sense of feeling, reputation or character and what I call heart. So I am studying local history, to see if I can write about some of those long forgotten characters, either in stories, or preferably in poems. Scottish poets wrote brilliantly about their home towns, so I shall have a crack at this lyrical form to start with.


THE COUNTRY INN

By Len A. Hynds

 

I will arise, and go there now,
to my home near the old ash tree.
That cottage, just below the brow,
holds a welcome there for me.

And then I'll have some peace there,
in the veils of the morning mist,
watching it rise, slow in the air,
as by the sun, the Stour is kissed.

The surrounding water meadows,
fringed by forest trees,
that give such welcome shadows,
that every traveller sees.

And at noon, bluebells like heather,
seem to swim in fields like lakes,
being rippled by the weather,
or by birds in smoothing wakes.

So I must go before darkness falls,
with the shadows coming fast.
And so my friend, as Ashford calls,
I must leave this inn at last.

 



Have any of you ever heard of a British organization called “Lets Face It” It is a group of people who have suffered cancer of the head and neck; they have not had their voices affected, but their faces have had to be completely re-built. All this reconstruction work was done initially at Roehampton Hospital, who was famous during the war for their work on the reconstruction of the faces of fighter pilots.


One of the founders, Christine Piff, a remarkable lady with a reconstructed face, has moved down into our area and started an East Kent Group. We larys were invited to join, but I thought we didn’t qualify. However, at our first meeting she told us how they all admired us 'Larys' who had lost their speech and I told them that our affliction was nothing compared to what they had undergone.

I want to share the short poem I composed and read out during that afternoon meeting when our two groups combined.

THE PHOENIX

By Len A. Hynds

 

The East Kent Group of 'Lets Face It,'
invited us 'Larys' to join.
But surely, they would not permit,
that we, their good name purloin.

We felt that we were not good enough,
our conversions were all 'inside',
covering all, however tough,
made us expert at what to hide.

But Christine said, "You've been there too,
the same problems you've had to face.
With courage you all, just saw it through,
and with such exceptional grace.

And so my friends, we are glad to be,
joining this group with panache.
You are like some phoenix rising,
from that fiery cancerous ash.

 

 

 

 

 

 

NVA President, Conferred

“Most Outstanding Persons with Disabilities Award”

by UNIVERSITY OF THE PHILIPPINES in MANILA
PHILIPPINE GENERAL HOSPITAL

 

In the photo from right to left, are Chancellor Ramon Arcadio, Secretary Corazon (Dinky) Soliman, Eng’r. Emer Rojas (awardee) and Dr. Rolando Domingo, the UP-PGH Hospital Director.

 


The UP-PGH Department of Rehabilitation Medicine celebrated the “32nd National Disability and Rehabilitation Week” with their annual Recognition Award of Outstanding PWD last July 12, 2010. This is to honor valuable contributions and selfless efforts of individual Persons with Disabilities (PWDs) and organizations to support the rehabilitation and recovery of new PWD patients.
For 2010, DSWD Secretary Corazon “Dinky” Soliman as UP-PGH special guest, led the awarding of Engr. Emer Rojas of the New Vois Ass’n. of the Phils. Inc. The award cited his all-out support in the rehabilitation of voice-impaired persons for the past seven years.

 

 

 

 

 

Hi Pat,

Thought of you and all your other helpers, who must spend hours computer bound! I don't know where the idea for neck exercises originated, but think maybe we should all use it for our desktop! My friend and mentor, Bill Murray, has spent decades advocating for our area (chief political stirrer) and at 87, should spend less time with his computer! So I wouldn't be surprised if one of his carers sent this to him, as his neck has suffered badly.

 

Neck Exercises to do at the Computer

 

I have spent too much time as stirrer of local politics, and now have over 200 ww emails to read! I began at the latest, and wondered if you had heard of using cod liver oil (Omega 3) to ease reflux? I heard on talk back radio a while back that a lady had used it for dry throat tickle after quitting smoking, so I tried it for my reflux (I am not the lary in the family) and it certainly helped. I was also advised by a naturopath to use a zinc supplement, (too much acid) and it also helps. (not in tablet form, advised that it doesn't work properly, so use powder form mixed with water - called Zinc Fix in Au). As with all vitamin supplements, these should be used in accordance with directions, preferably with professional advice. My lary, Bob, stands by the bi-carb, which he takes dry, I guess, with a sip of water. Not sure if he said half or quarter of a teaspoon. I also find avoiding excessive wheat foods (gluten) helps, which makes sense when it seems candida is one of the biggest problems with TEPs, and yeast is in most of those foods.

Thanks for your time, and for all the good work you put into ww.


Regards
Pat(ricia)
Australia

 


 

Dear Pat,

Recently Candida problems were the subject for dicussion, and I want to send you the following information:

13 years have already passed since I was laryngectomized, received my first TEP and started my war against Candida. My surgeon gave me then Fungizone tablets (Amphotericin) to take orally, but this was inefficient already from the start on. Had to move over to Nystatin (Mycostatin ), which is produced as a mixture to take in or to use directly into the TEP when cleaning it with a brush. Even that showed to be insufficient when I was in a hot and humid climate, as in Zimbabwe. There I learned from a local pharmacist who had his jaw broken and then fixed to the upper jaw with metal wire for eight weeks, - I learned a new treatment. He had a nasty infection with Candida both in his mouth and nose, and even in the middle ears. He was almost strangled by mycosis! He then got a bright idea. He took Nystatin tablets (500.000 i.u.) meant for treatment of vaginal candida infections. "They saved his life", he insisted.

I have a candida infection which flares up now and then. Normally I keep it down with a spoon of " Belgian Yoghurt" every morning. This yoghurt I learned about in an IAL meeting held at Stanford University five years ago. The secret of this yoghurt is that it is produced from raw-milk (unpasteurized fresh milk) and a type of yuoghurt cultivated in Belgium. I am happy to have a cow-farm in my neighborhood where I may get fresh milk, directly from the farmer. (In our country, all milk which you buy, shall be passed through a dairy for pasteurisation). I make my own yoghurt from the original "Belgian Yoghurt" bought in Belgium and use this as the mother culture mixed with my neighbors milk. Kept at 25-30 centigrades for 2 days, I have a batch of exellent candida prophylaxes from one liter of raw milk. This I keep it in the fridge (about 4 centigr) untill it is time for a new fermentation product. The color, taste and smell is like the original Belgian Youghurt.

If a strong flare-up occurs, I go to the Zimbawe-method, with the Nystatin-tablets (500.000 i.u.) 1 tabl. a day, but these tablets are not availalble in my country. But so they are in some neighbor countries. The candida war makes me to a smuggler!

Another experience I have made is; that the TEP protheses which I have received during the last year, seems to be better withstanding candida than earlier ones. If this has anything to do with addition of some antimycotic substances into the material from which the TEP`s are made, I do not know, but these possibilities should for sure be "around the corner".

Dear Pat, if you want to keep my experience for yourself, is up to you. I would like to share it with some else who suffeer from candida infections.

Yours sincerely.
Lorents Gran
Belgium
 

 

 

Welcome To Our New Members:

 

I would like to extend a "Warm Welcome" to our most recently accepted laryngectomees, caregivers, vendors, and professionals who have joined our WebWhispers community within this past month. There is a great wealth of knowledge and information to be accessed and obtained from our website, email lists, and newsletters. If ever there should be questions, concerns or suggestions, please feel free to submit them to us from the "Contacts" page of our website.

 

Thanks and best wishes to all,

 

Michael Csapo

VP Internet Activities

WebWhispers, Inc.

 
 

We welcome the 34 new members who joined us during July 2010:

 

Byron Arnold
Odessa, TX
Laurie D. Arnold - (Caregiver)
Odessa, TX
Melea Balwan MA CCC - (SLP)
Tujunga, CA
     
Anthony Costa
Loxahatchee, NY
Patrick J. Dangerfield
Rome, NY
Ronald Denison
Holt, MI
     
Deborah Domitrovich
Auburn, CA
Michele Ewers - (Caregiver)
Darlington, MD
William G. Gransee Sr.
Abingdon, MD
     
Brenda Haylor - (Caregiver)
Andover, KS
Catherine Hermsen - (Nurse Practitioner)
Chicago, IL
David Hill
Camden, NJ
     
Ted Holcomb
Troy, OH
Billy Hughbanks
Story, AK
Janet Hughbanks - (Caregiver)
Story, AK
     
Gene R. Kellogg
Andover, KS
Lisa Kohlenberger - (SLP)
Pasadena, CA
John Linnenbaugh
Cochranville, PA
     
Christina MacDonald - (SLP)
Montreal, CAN
JoCarmen Martinell - (Caregiver)
Pittsburgh, PA
Lee McClelland
Vacaville, CA
     
Peter Meuleveld
Salem, OR
Fred G. Mitchell
Grecia, Costa Rica
James Olcott
Bakersfield, CA
     
Nadia Pacheco
Los Angeles, CA
Anton (Tony) Planicka
Brunswick Hills, OH
Benjamin Curtis Reams
Freeland, WA
     
William R. Schmalz
Whitesboro, NY
Barbara Jean Schneider
Silsbee, TX
Martin Spencer (MA CCC SLP)
Columbus, OH
     
John Summers
Deland, FL
James. T. Trently
Santa Maria, CA
Joan Waite - (Caregiver)
Mishawaka, IN
     
Tom Waite
Mishawaka, IN
   

 

 

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