May 2012

 


 

 

Name Of Column Author Title Article Type
News Views Pat Sanders Caring Goes Both Ways News & Events
VoicePoints T W Cavanagh, M.S.,CCC-SLP, BRS-S Tracheostoma Education-Med
Between Friends Donna McGary Adult Onset Asthma Commentary
Speaking Out Members Family Reaction To Cancer Opinion
Nuf-Sed Bob Keiningham Our Ace In The Hole Commentary
Travel With Larys Dorthy Lennox Before The Cruise Travel
The Speechless Poet Len A Hynds Wonders Of New Life Prose & Poetry
WOTW Editor Ron M - James P - Patricia Letters Comments
New Members Listing Welcome News & Events

 

 

 

 

Caring Goes Both Ways

 

Caregivers and Patients comprise most of our sizable membership and, last month in Whispers on the Web, we asked for some of you to write about your caregivers when you first became a cancer patient or a laryngectomee. We had 11 very good answers, 10 of them from men, and most of those gave full credit for help to their wives, although they mentioned others who were also there.

It made me stop and think of our men members who had loving care from their wives through the lary surgery and rehabilitation but now have a role reversal. I know and have the greatest admiration for the men larys in our organization who are now caring for wives with different types of illnesses: heart problems, cancer, MS, diabetes, Alzheimer's. This is to take nothing away from the wives, but, I grew up in a generation and ethnic background that expected that. The woman was the caregiver and learned with dolls, as a child, and helping around the house… often by seeing the way Mother did it.

My father grew up in a German household in Chicago, born just after his parents and older brother had arrived in America. There were eventually 6 children, who lived, and they were cared for by his mother, the 4 boys, trained to be carpenters by their father. His father ruled the household and insisted that German be spoken at home. My dad had moved on to the West and then to the South and was married when his mother passed away, before I was born, so I never knew my grandmother. I have a faint memory of my grandfather, who became an invalid and lived for about 7 more years after his wife passed, and who were the caregivers? His two daughters. I understand he was not an easy patient!

My father could fix anything, could build a new house from the ground up, which was his kind of caregiving but I don't ever recall seeing him cook or clean or do laundry!

So, I see these guys here on WebWhispers who have become caregivers in their later years, a role most had not been prepared for, and I admire them greatly, those who are caring for their caregivers.

 

Enjoy,
Pat W Sanders
WebWhispers President
 

 

 

 

 


Tracheostoma Attachments

 

Trish W. Cavanagh, M.S., CCC-SLP, BRS-S
VA Medical Center, San Francisco
Chief, Speech Pathology Section

The Tracheostoma


When an individual undergoes a total laryngectomy, the larynx is removed and the person is left with a stoma (or hole) at the front of the neck. This stoma leads directly to the trachea or "windpipe" and is the only orifice through which the person can inhale and exhale. The laryngectomized individual is no longer able to breathe through their nose and mouth and air does not even pass through the throat.

Before the laryngectomy, the nose, mouth and throat worked to increase the temperature, humidity and filtering capabilities as well as resistance for breathing. All these aspects are lost when a patient breathes through an open stoma. A laryngectomee who is breathing through an open stoma is likely to be breathing drier, colder and less filtered air than before his/her surgery. Also, the person is likely taking more shallow breaths compared to before the laryngectomy surgery because the nose and throat are no longer providing resistance to the air that is being inhaled.

If a person with a laryngectomy breathes cold, dry and unfiltered air, the airways will respond by producing more mucus in order to warm, moisten and help clear any debris that is inhaled. The individual's quality of life will be affected by the need to cough out this mucus through the stoma more frequently and in larger amounts.

Heat and Moisture Exchange Devices


There are products available to help the laryngectomized person increase the heating, humidifying and filtering capabilities lost after the total laryngectomy surgery. These products are called Heat and Moisture Exchange Devices (HME). HMEs are sold by several companies and vary in subtle ways, but, in general, each one has a cassette with a foam filter inside which does the work of retaining the heat and moisture from an EXHALED breath to be put back into the next INHALED breath. The foam filter traps particulate debris so that it does not enter the airways. The foam filter also provides resistance to breathing which causes the user to breathe a little deeper.

In order to maximize the benefits that an HME can provide, it is very important to ensure that every breath the user takes goes through the foam filter. This requires that that cassette with the foam filter inside be placed in a housing that is airtight.

Housings


A housing is the term used to describe the product that the HME user "snaps" the HME cassette and foam filter INTO, so that it stays in place in front of the stoma. The housing is the part that creates the airtight seal, which in turn, allows every breath the person takes to go through the foam filter that is being held in the center of the housing.

Housings are available in two basic styles. An external housing is a round or oval adhesive "donut" which the user sticks to his/her skin AROUND the stoma. The hole of the "donut" or disk is where the HME cassette is "snapped" into so that it is directly in front of the stoma. The very important, and sometimes tricky part of using the external housing is to assure that the adhesive seal against the skin is complete and airtight. Difficulties can arise when the surfaces of the skin around the stoma or peristomal areas are irregular. The irregular "topography" of the skin will make achieving a complete adhesive seal a challenge. To give yourself the best chance of using an external housing, it is recommended that the skin around the stoma is clean and dry prior to placing the adhesive housing. Users may also find it helpful to use a silicone skin barrier, such as Skin Prep, along with extra adhesive, such as Skin Tac, before placing the adhesive housing.

The second general type of housing is called an intraluminal housing. These types of housings have a portion that is placed inside the stoma and generally do not rely on an adhesive component to create an airtight seal. The airtight seal is accomplished by a well-fitted intraluminal housing. The length and diameter of this type of housing should be determined by a Speech Pathologist or an ENT to assure a good fit. Some intraluminal housings will still require a small adhesive component to keep it in place, but many do not.

Attachments


Once the laryngectomized person has established a housing that is well-fitted and airtight, there are a number of attachments that can be placed into that housing in addition to the HME. There are valves that allow for hands-free speech for voice prosthesis users, several types of shower guards that can fit into all housings allowing the user to take showers without having to worry about water running into the trachea. Even laryngectomees who have need for a whistle can attach a special whistle into a housing.

If you or someone you know is having difficulty getting a housing to fit well, a speech pathologist knowledgeable in the care of the laryngectomy patient can be very helpful. There are many products on the market to help in this area and as an SLP working with this population, it is our job to know the products that can help each of our patient's unique needs.

 

 

 

 

 

Adult Onset Asthma


According to the AAAI (The American Academy of Asthma, Allergy & Immunology), in 2009, approximately 24.6 million people in the United States or 8.2% of the population had asthma. Apparently I was one of them but I didn’t know it.


Many adults who develop asthma don’t recognize the symptoms at first and therefore don’t seek proper treatment or learn how to effectively manage this potentially fatal condition. An estimated 300 million people worldwide suffer from asthma, with 250,000 deaths annually attributed to the disease. More than 12 million people in the United States reported having an asthma attack in 2008 ( the last year statistics are available), accounting for 217,000 emergency room visits and 10.5 million office visits.


After my latest visit to the emergency room in February, which resulted in a 3 day hospital stay, I decided it was time to get more information about this new (to me) condition. The first thing I learned from the Asthma Educator/ nurse was that adult onset asthma is on the rise and allergies seem to be the culprit. The second thing I learned was that I should never again wait that long to seek “medical attention”. The third thing I learned was how to monitor my symptoms. Since I can’t effectively use a peak flow monitor because of my tracheostomy, we must rely on my experience and medical history.


My situation is obviously complicated by a tracheostomy. I am not a laryngectomee. However, because of extensive radiation damage and scar tissue I have a totally non-functioning airway and vocal cords. I breathe exclusively through my stoma and my vocal cords are permanently fused. I had many complications from my radiation therapy and thought for a long time that my coughing and excess mucus anytime I exerted myself was simply another side effect, since I had had severe radiation bronchitis.


I am not so sure anymore. Years before I had cancer I had started to notice that I would have terrible coughing spells any time I went outside in the winter to shovel my walk and driveway. It would subside once I went inside again, but it was quite dramatic. Then I started to notice the coughing and shortness of breath during exertion. My doctor diagnosed asthma and I started a rather lackadaisical treatment since it didn’t seem all that serious. I really thought I was just out of shape. A few months later I landed in the ER thinking I was having a more serious asthma attack and learned instead that I had a tumor blocking 80% of my airway. Asthma was considered a misdiagnosis for nearly a decade until the shortness of breath re-appeared. CT scans revealed no new tumors and to my new pulmonologist, the symptoms were unmistakable. I had some type of allergic asthma, exacerbated by breathing through a trach without the benefit of a nose filter.


So we started fiddling around with meds that could be administered through a nebulizer and with some “puffers” for when I wasn’t able to use the nebulizer. Most of these, including the nebulizer were eventually covered by Medicare Part B. I started to feel better and got back out into the garden and then WHAM! Three trips to the ER in as many months and I was on a whole new regimen of drugs and had a list of possible triggers I needed to watch out for.


Once again, I started to feel better – not great, but better. Waking up in the middle of the night short of breath I attributed to allergies and those pesky dust mites. I told myself having difficulty bringing the laundry up from the basement or keeping up with my grand-daughter at the playground was just because I was overweight and out of shape. I was wrong.


My wake-up call started when Kayleigh (my grand-daughter) got a cold this winter which turned into "the croup". Then I caught her cold and it turned into nasty bronchitis. I saw my pulmonologist after the worst, I thought, was over but he still put me on a round of antibiotics, just to be safe. My lungs sounded fine and we both thought I was out of the woods. I had a relapse with a bad breathing episode a few nights later but I managed it with my nebulizer meds. The next day I felt much better, told my son everything was okay and then I crashed. I started having breathing problems that night and no matter what med combination I tried, I got only minimal relief. By 6AM that next morning, I knew I was in trouble and had to wake my son up (he lives next door) to call 911. I could barely walk or talk.


In the ER, they put me on an IV drip with prednisone, set up a constant nebulizer with meds, ran x-rays, an EKG and discussed the possibility of bronchoscopy or intubation. I was admitted to the ICU and learned only upon release three days later that my diagnosis had been “imminent respiratory failure”. The pulmonologist on call dryly commented upon my release, “It is our consensus that your asthma is not nearly as well managed as you think and you should never again wait that long to seek medical treatment.” He got no argument from me!


I met with my own pulmonologist the next week and we tweaked my meds once again. I take two kinds of “maintenance” medications twice daily using a nebulizer. One is a long-acting corticosteroid medicine, Pulmicort (budesonide) that reduces inflammation. The second is a long-acting beta-agonist (LABA), called Perforomist (fomoterol fumarate), which opens up narrowed airways and reduces swelling. Essentially they both do the same thing but from different approaches. LABAs are not without risk but in asthma that is not well-controlled using just a corticosteroid, they can be very useful. For those who have seen TV ads for Symbicort, that is the same two medications combined in an inhaler but it is not available in nebulizer form, so we get the same result this way. It just takes longer to administer. I allow for about 20 minutes morning and night on the nebulizer. My pulmonologist also added Singulair (montelukast), which is a leukotriene receptor antagonist (LTRA). They work to block the action of substances in the body which cause the symptoms of asthma and allergic rhinitis. It is also used to prevent bronchospasm during exercise. I take that in a pill form at night. Those are just my maintenance meds.


I also have two types of “rescue” inhalers, administered with a “puffer” directly into my stoma, which I carry with me when I go out. I have those same meds available in nebulizer form, should I start to have a serious attack at home. The fast-acting bronchodilator (rescue) drug of choice is albuterol, usually in combination with atrovent. I don’t tolerate albuterol very well. It makes most folks shaky and elevates their heart rate, but it is much worse for me. An alternative, Xopenex, is better, but way more expensive and Medicare won’t cover it. Thankfully, the respiratory therapist at my pulmonologist’s office found a pharmacist who managed to get me a bag of the respules for my nebulizer at minimum cost. I didn’t ask how they did it– I was just grateful. These medications are very expensive. Even with Medicare D coverage, I pay over $200 a month just for the three maintenance meds and the inhalers are another $150, although I don’t need them every month.


I say all this for two reasons. One, there have been several questions about asthma on the list lately and I bet I am not the only one who needs to get better educated about this chronic condition. Second, asthma is tricky. It can be expensive and time-consuming to get under control and keep it that way. But like many other chronic conditions, the goal is management. In this case, that means being asymptomatic. The asthma education materials these days use a “traffic light” model.


• Green zone is under control: you have no symptoms and asthma doesn’t get in the way of work, activities or sleep. Keep taking your maintenance meds.


• Yellow zone is caution: you are starting to show some symptoms such as tightness, coughing, wheezing and shortness of breath. Take more medication, such as quick relief, as directed. Get away from triggers right away.


• Red zone is medical alert: You are having a flare-up. Take action now. Symptoms include constant cough, wheezing, trouble breathing. Waking from sleep due to asthma symptoms. Take quick relief and other meds as prescribed. Call your doctor and if breathing doesn’t improve, seek medical help.


I know now that I was living my life mostly in the yellow zone for quite some time. The new plan, which seems to be working, is to take my “quick working” meds, 15 minutes before exercise or when I know I will be in areas with environmental triggers, which now that it is spring here in Maine, is pretty much every time I step outside my door. I also take them when I feel the first sign of a cold coming on and continue taking them 4 times a day until the bug passes. Respiratory infection is one of the major triggers of flare-ups. I also have in my arsenal a filled prescription for prednisone (the super hero of anti-inflammatories). Should I get to the red zone and find that my nebulizer xopenex and atrovent are not giving me relief, I can start on 50 MG of it before I even head to the ER. Prednisone takes about 6 hours to work, so my doctor wanted me to have it on hand for emergencies.


I must admit that between keeping my trach tube & stoma area free and clear and my lungs and bronchial tubes open and relaxed, I often feel that just to breathe is practically a full time job. Asthma certainly complicates things, but it is manageable. Just last weekend I worked outside in my garden most of the day, pulling weeds, transplanting and generally cleaning up from the winter. As I finally relaxed at the end of the day and surveyed my progress with a nice glass of wine, I realized that my breathing had been a complete non-issue. It was my poor arthritic hand and knee that were paying the price for all my playing around in the dirt, not my lungs.


That’s progress and reason for hope.

 

 

 

 

 

How did your family react when you were diagnosed with cancer?

Who was your biggest supporter?

When I interviewed the laryngectomees of Costa Rica for my documentary I was a little surprised at the detailed explanations I received. The President of the Costa Rica Laryngectomee Association completely broke down and couldn't even speak. His total lack of support was devastating to him and probably the foundation for his desire to help others. Jack

 


 

John Hendrix - Aug 2011

This is a great question and one I am sure you will get some very good answers. My biggest supporter was easily my wife. We live in GA and went to MD Anderson in Houston to have the TOTAL done. We thought we would be out there 2 to 3 weeks tops, but it turned into a 3 month adventure.

After the surgery, my wife did everything for me. She cleaned in and around my stoma for weeks and weeks. I was so down, I would not even look at the hole in my neck for the first week. After I was released from the hospital, it was a very slow healing process. I stayed on a feeding tube (through the nose) for 2 months and she made sure I had all the food (if that is what you want to call it) and meds I was suppose to have each and everyday. She would wash my hair, take taxis to everywhere to get what we needed, just pretty much ran herself to near exhaustion. Since I was not eating real food, she let her diet slip because she felt guilty eating good while I was on formula. I could go on and on what all she did for me.

One last thing I should mention is she took all my frustration that I threw at her and everyone. She was not pleased with me sometimes but she did not let it faze her like it would a lot of folks. I still have my frustrated moments, may always have them as things still have not settled down but I am only in the 8th month of post-op. I would also add both our employers were so kind and generous. Mine paid me pretty much my full salary each week while we were in Houston. My wife’s let her go on FLOA and held her job for her while continuing her benefits. I am on her insurance plan as it is much better than mine.

I have so many who have been there for me but my wife by far has been my biggest supporter. I honestly do not know where I would be today without her. We both said for better or for worse when we got married, I hope this is the worse part. I could go on and on but will leave it at this. As is so often stated on this web site, thank you Webwhispers staff and members for all your stories and advice. It definitely makes us feel that we are not in this alone!


 

Joe Hilsabeck - 2009

The first time for cancer was just a state of numbness, when I had a kidney removed and showed bladder cancer in less than a week. I was so blessed to have my wife and two grown children, who live close by my side all the time.

Tried radiation, which lasted 2 years before "up jumped the devil", almost overnight. Went in for emergency trach and then laryengectomy soon after. My children were with us all the way, but my dear wife was my rock, nurse, soul mate, secretary, accountant, and you name it, which got me through it all and continues each day.

I am so blessed.

 


 

Carl Strand, Mystic, CT - Feb 1993

My wife was my biggest supporter, closely followed by my children. At first my wife was devastated, but since she had experienced two rounds of breast cancer, both she and I had some inkling about what was to follow. I don't think either of us quite understood the issue of loss of speech. However, I had a primary TE puncture and was fitted with a voice prosthesis four weeks after surgery. As a result, I was speaking with both the electrolarynx and TE speech very soon after surgery.

I'm going to take the question a bit further. I was very open with my church family about the diagnosis. From the outset they were very supportive of both my wife and me. I tried to resign as the chair of two volunteer organizations. I was told by both that they wanted me to continue and I chair both organizations to this day. My employer was also supportive. I was back to work as an engineer in an industrial power plant six weeks after surgery.

My initial diagnosis was in March 1991, followed by laser surgery and radiation therapy. My laryngectomy and modified radical neck dissection were performed two years later, after the cancer returned.

 


 

Tom Olsavicky, Grafton, VA - April 1, 2008

Of course, the whole family was shocked at the news because I had never been a smoker or a drinker. I had been hoarse for two years before cancer was found under my right vocal chord, so we all knew something was not right. My wife was my biggest supporter because she had been a registered nurse and knew that I should take the necessary steps to have it removed as soon as possible.

What also made it an easier decision for me was that she had breast cancer, ten years before, and I gained a lot of respect for how she handled her mastectomy to eradicate the cancer. Don't get me wrong, I was still scared and frustrated that it had to happen but my 4th grandchild, who was the first to carry my family name, was due to be born a few days before my surgery and I wanted so badly to see him grow.

I can say that my whole family was very supportive during my rehabilitation. Immediately after surgery, when I had to write everything they acted like it was okay and did their best to wait on what I wanted to say. When I was learning to use the EL with the oral adapter, they did their best to try to understand. Now that I have become proficient with the TruTone EL, I find that they forget that I haven't always sounded this way. I have since had a 5th grandchild, who will also carry on the family name, and since neither of the boys have heard me talk any other way, they understand me very well and accept me for who I am.


I am now 68 years old and four years out from the surgery and could not have asked for a better outcome. I look forward to many more years with them.


 

Dave Ross, Edgewater, FL - 2005

I can not identify who my “biggest” supporter was. Every family member, friend and acquaintance gave me absolute 100% positive feedback.


Frankly, I suspect that Dutch Helms and WW may have played a major role in the scenario because I had undergone lung surgery in 1997, radiation for laryngeal cancer in 2001 and had come through all with no adverse effects on my life and relationship with others. Then, in 2004, when I started getting hoarse again, I found WW and for the full year prior to my laryngectomy in April of 2005, I received a complete education and positive outlook on what I was about to undergo. I believe this outlook was portrayed to everyone I knew and was “absorbed” by them.

Dutch, I know you see this and all I can say is THANKS!!!! I must also give great credit to my surgeon John Werning, M.D. and Brent Baldwin, SLP, both with Shands Medical Center at the University of Florida because due to their outstanding services I was speaking with a great TEP voice two weeks post surgery.

 


 

Debi Austin, Los Angeles - 1992

Wow, fantastic topic. After 19 years I remember driving back to work sitting in my car thinking of a line from a David Bowie song, "ground control to Major Tom..."

My mom and two sisters were great, they never allowed me to believe that very many things would change in my life. My neice and I learned how to talk together, although she gave Elizabeth less argument than I did.

My so called friends and the people in my life apparently thought cancer was contagious, so they fell off the face of the earth. When I ran into them in later years and they wanted to "get together" I had better things to do.

This is one of the reasons local support groups are so important, to support you there, now, live and in color, face to face. They probably won't have all the info WebWhispers or the IAL has almost at your fingertips. But you can touch someone that has been on that road and make an amazing connection.



 

Terry Duga - partial 1993 - total 1995

When I first told my parents that I had been diagnosed with cancer, my mother got all emotional and panicky (My older brother had recently died of throat cancer.) I told them I was sorry that I had called them. This got her very angry. They got over it and they were helpful, but, later, when I had the total, I told them to stay in Florida. I could handle the operation, but not the fear that they could not hide.

But that is me.

 


 

Bob Keiningham - Sep 2008

Interesting topic! In my case my family and friends were terrified when they thought I was going to die from Prostate cancer about twelve years before my Larynx surgery ... but I survived. Then they were scared when I had cancer removed from my left vocal chord a couple of years later ... but I survived. Then they were concerned when I went through radiation and chemo for lung cancer a couple of years later ... but I survived.

So, by the time Laynx surgery came our way, all of us had moved from terror to fear to concern and arrived at a "business as usual" attitude that allowed us to laugh and joke our way through the surgery and recovery period. I suppose "Practice makes Perfect" describes our experiences.

My clearest memory of the deal is that my youngest grandchildren were scared of my new voice, but I solved that by making a game of taking each of them on my lap and showing them how to push the Lary button in my neck to make those funny sounds themselves ... with peals of laughter all around.

I love all of them without measure, but my biggest hero remains the little girl who agreed to make this journey with me fifty-three years ago and we celebrated the anniversary of that miraculous event just yesterday!

 


 

Jim Olcott, Bakersfield, CA - June 2010

My biggest supporter was and is my wife. My entire family has been extremely supportive along with my friends. I have also received tremendous support from the medical community. I am truly blessed.


 

Len Hynds, Ashford, Kent, England ( Speechless Poet) - June 2004


The consultant Mr Sharpe looked up as I entered his room, every inch an English gentleman, and my life as a detective at Scotland Yard, gave me the ability to read body language, especially in the eyes.

Although he tried to smile I knew that the result of the biopsy was not good. His nurse Theresa by standing beside me with a sad look on her face, and gently placing a hand on my shoulder, confirmed my fears.

"I'm afraid it's Spindle Cell cancer, which is a large tumour far advanced." I had half expected this news, so had prepared myself. I returned home to tell the wife and she wept, but then fought against it saying, " I don't believe them. You have not got cancer, and you are not going to die."

When I saw the Consultant Surgeon after a week of wasted radio therapy, although I knew he was a very clever man, when he said, " There will be danger in this operation, as you have metallic heart valves, a pacemaker, and other replacement parts," my fears of non survival were confirmed. I later heard junior staff talking, and heard that in my case there was a 40% chance of getting through it. Although agreeing with my dear wife, I secretly made arrangements for my departure.

The news of my cancer spread, and my family was devastated, with many friends just not knowing what to say to me. People I had known for many years sent me messages of hope, including many criminals I had dealt with over the years, which surprised me, and prayers were said in churches of every denomination.

Throughout all this, my eldest son hardly left my side, in spite of being the head of the High Tec Crime Unit, of great help to his American colleagues during their troubles. My daughter concentrated on looking after my wife, who still had every confidence I would survive.

I did!

 


 

Bill Rose, Perth Western Australia - Mar 2009

I have been incredibly lucky in my laryngectomy journey over the past 3 years (Full pharyngectomy flap surgery 14 hours etc ). The support I have had from my family, in particular my wife, has been overwhelming. I was in hospital for approximately 32 days and she was there everyday along with children, as well. You are probably all aware of the isolation you feel without a voice and I didn't speak for around 6 months and you wonder if you are ever going to get out of the doldrums but support gets you through in the most bizarre way.

Prior to my operation I had planned to go and watch an Australian rules football game in Melbourne as my home team of Fremantle was playing there, a distance of around 3400 miles return. After the operation I said that I would have to cancel the trip, but my wife and her sister (a nurse) said, lets go, and dragged me along. My head was still about as round and as large as a basketball and I was still eating jevity through my stomach plug and I wasn't sure how I would go on the plane but all worked out well. During the day they would just take me aside lift my shirt put the syringe in the tin and then squirt it into the stomach plug. I am sure some people thought I was real weird junkie! Unfortunately, my team lost but we had a great time and I would never had done that if they hadn't of supported me.

The nurses at the hospital were fantastic as well and really went out of their way for me, one nurse I now call a friend and invited her and her partner to my recent 60th birthday party. I would never have met her without having the Op. which is so ironical.

Other support has been from my workmates, one in particular who continually emailed me and kept me in the loop at what was happening at work. I never thought I would get back to work but my friend assisted my recovery there. I started back at two days and now have been full time for about two years and enjoy it. All of that support gives you back your confidence and provides a sense of belonging which is essential for a happy life.

PS. I didnt mention Webwhispers in my story but that support by just being there goes without saying!!

(Bill also didn't mention that he and his wife came to the IAL last year and we were delighted to meet them. P.S.)

 

 

 


 

Our ACE in the Hole


That “A.C.E.” is our A-ttitude, C-apablities, and E-ffort, that we all possess for playing any hand that life deals us. Some folks claim that a good attitude is all we need to sail through life, and perhaps it is, but I’ve come to believe that developing and maintaining a great attitude is just a vital starting place for overcoming any problem or grasping any opportunity we choose to deal with.

I believe that we each possess a different set of capabilities that can be turned into genuine abilities only by generating massive amounts of personal effort. The greatest attitude in the world cannot overcome an innate lack of capability and the greatest capability on earth will never become a genuine ability without that great effort that stems from a great attitude.

Playing our “A.C.E.” in the hole can lead us to unending achievements once we learn that it involves a never ending circle of personal activity.


Our attitude is a product of our goals. Without specific goals the world around us tends to shape our attitude. Our capabilities should determine our goals. Why beat ourselves up creating a great attitude towards the pursuit of something that we are not capable of achieving regardless of the time and effort we give it? Why not select something that we know we could achieve with enough new knowledge and experience! Effort, sheer personal effort is how we gain that new knowledge and experience. It is an exercise in applied physics.

Sir Isaac Newton gave this secret to the world when he wrote, “It takes more force to set a body in motion than is required to keep it in motion and an equal and opposite amount of force to stop that body once it is in motion.”

Once we set a new goal based on our capabilities, and condition our brain to accept it as being important to us, we should apply Newton’s law to the pursuit of that goal everyday of our life until we become so swept up in the activity that we forget everything but its achievement. We should “time-frame” the effort because “better is the enemy of good” when it comes to throwing ourselves into that pursuit. We need to muster all the force we can with a “ready or not, here I come” attitude. Then, stick with the effort until our deadline for that day approaches and we have just enough time left for a maximum effort.

Some of our greatest ideas and discoveries on the way to a goal will occur when we are running out of time. Some of our greatest defeats in pursuit of a goal will occur when we decide to wait for the effort until we are “better” prepared. Some of our worst battles with our attitude will occur when we fail to set bold new goals.


Nuf-Sed
Bob Keiningham
 

 

 

 


 

Before the Cruise - a visit to San Diego

Dorothy Lennox

 

As I read your notes in the list about the 2013 Panama Canal Cruise, I just wanted to send you some of what we plan, in case you might want to add a little of it to your San Diego notes or send it to some of the other people that have signed up for the cruise. Other people in the cruise group might want to go to San Diego early as Tom and I are planning to do. We are going to go early - hopefully just after Christmas and stay in the Holiday Inn (quite a nice one) right across from the cruise boat dock.  For boarding, on January 3rd, 2013, all we'll have to do is check out and wheel our luggage a few feet across the street.

While we're there, we'll visit Tom's old ship, the Midway, an aircraft carrier which is now a museum just a short ways down the street. He belongs to the Midway Magic group that is restoring and operating her. We can go aboard any time we want and he also gets several free tickets every year to give to friends and relatives. We get a kick out of being in San Diego and talking to a family with several kids that wants to go and giving them a couple of tickets so they don't have to spend as much as they expected. Tom would LOVE taking anyone from WW who wants to go on a tour of the ship. He's really very good at explaining things and would like to live there part time and be a docent but that isn't in the cards - at least not right now. Anyway, when we went aboard for the first time and he was telling me about the catapults and arresting gear and signal flags and plane elevator and etc. on the deck, a whole crowd collected to follow us around. We've been there about a dozen times since it opened a few years ago and he has been able to look over all the places he didn't get to see while he was aboard (because you don't go where you have no business being on a ship) so he can give a really good tour. For those who want to go on their own, there is a very good tour with earphones that is included free with admission and it is excellent. There is a choice at each stopping spot of having just a short description or of adding the actual voice of a crew member who worked in that area telling something about his own experience there. There are benches on the hanger deck for resting and an outdoor lunch area on the fantail and, I think, another lunch area on the mess deck. And there is an elevator from the dock up to the hanger deck entrance and from there up to the flight deck for those who have a problem with stairs. And there are great views of lots of San Diego from the flight deck.

As well as the Midway, there is also an old steel hulled sailing ship to tour and a sub and another ship or two, and harbor tours to take. "Old Town," which is the original Spanish settlement area and a Victorian settlement area right near it, are about 3 miles away, and Balboa Park where the zoo is located, is only about a mile or so from the waterfront.. Even without the zoo, Balboa park is a fabulous place to visit. See below taken from Wikipedia.com

"Balboa Park is a 1,200-acre (490 ha) urban cultural park in San Diego, California. The park is named after the Spanish maritime explorer Vasco Núñez de Balboa. It was the location of the 1915 Panama–California Exposition and 1935 California Pacific International Exposition which each created architectural landmarks for the park.
The park's site was placed in reserve in 1835, and so is one of the oldest sites in the United States dedicated to public recreational use. In addition to open space areas, natural vegetation green belts, gardens and walking paths, it contains a variety of cultural attractions including many museums, several theaters, and the world famous San Diego Zoo. There are also many recreational facilities and several gift shops and restaurants.

Balboa Park, and the historic Exposition buildings, were declared a National Historic Landmark and National Historic Landmark District in 1977, and placed on the National Register of Historic Places.[1][2] Balboa Park is managed and maintained by the stewardship of the Parks and Recreation Department of the City of San Diego."

My notes again: If you haven't already, you might want to look up Balboa Park on Wikipedia. There is a lot more detailed information and at least a couple of good pictures. I didn't have time to look all the way through it. The ornate buildings from the 1935 event were put together quickly, we've been told, with the hurried help of set construction people from the early Hollywood era, with with spit and plaster, never meant to last - but they are still there - with an incredible collection of really interesting stuff. And there is a new Air and Space museum with a middle glass roofed rotunda used for meetings, classes and entertainment, that is on the direct flight path of planes into San Diego Airport. Planes landing in San Diego come in right over the city - and very low! Over Balboa park - and the air museum in particular - they are only about a mile or so away from touchdown. From some of the areas outside you see the planes "floating in" between buildings. I never fail to be surprised and amazed when I see a plane at night gliding by "Fat City," a restaurant on a hill above the ocean front, all lit up in bright neon.

The waterfront area has fish restaurants and other boats to look at. Just past the Midway is Seaport Village - a great little town-type layout with restaurants, specialty shops and a carousel. Across the bay is Coronado with it's wonderful old Hotel del Coronado that was once the vacation spot for movie stars and the Duke and Duchess of Windsor.

Tom and I lived in SD when we were first married and he was stationed there after he spent 8 months on the Midway which went into dry-dock up in Bremerton, WA to get one of the new angled decks put on. At that time they called it a "canted" deck but somewhere over the years it became an "angled" deck. Maybe too few people understood the word canted.

Anyway, we love itin San Diego and try to visit every chance we get. We hope that some of the cruisers who haven't been to the Midway or some of the other places will want to join us.

 

 

 

 


 

Spring and the Wonders of New Life


I composed this for my great-niece, Lucy, who is expecting a second child.


A MOTHER’S LOVE


Love usually has conditions,
in one way or another,
but no conditions do exist,
between a child and its mother.

From long before the day of birth,
they form such natural bonds.
That love a mother always gives,
and the way the babe responds.

Just see them when they are together,
and imagine them apart.
No other love's quite like it,
it can melt the hardest heart.

The love between a mother and child,
is impossible to explain.
It's just a simple fact of life,
and will always be the same.




The waitress who served me coffee was several months pregnant, and when I asked when it was to be, she told me and became excited at the prospect. She told me it was to be a girl and they had already chosen a name, which was to be Lily. As I drank my coffee, I scribed these few words for her.



THIS LILY WILL BLOOM IN YOUR HEART


Love has many faces and forms,
it's the strongest emotion we share.
Growing always, throughout life’s storms,
freely given, to show that we care.

Now a sweet babe is about to be born,
your unconditional love you'll give.
A mother from your child’s first dawn,
giving love as long as you live.

 

 

 

 

 

FIRST VISIT

 

Today was my first meeting with a new laryngectomy patient and a famly member at the hospital. It was fantastic. My SLP went in to introduce me and we all had a great talk. When my SLP had to leave, the patient requested I stay for a little longer to answer more questions. We covered a lot of subjects and they thanked me several times for coming in. They commented how much it had helped ease their minds to have that knowledge and answers.

This is the comment I got back later from my SLP, by email: “You made my day and our patient's day. I stopped by his room later this afternoon and he and his mom were so so thankful for your visit. It went REALLY well! I am excited to do it again with future patients. It is an invaluable service to offer them.”

I really enjoyed it and felt that I was able to help. What a good feeling. They live up in Alaska so I told them a lot about WebWhispers and how great a resource it will be for them in a remote area. I guess he is really good on computers so he was excited to get signed up when he gets home.

I do want to say that I will always feel that your help and WebWhispers are what make this possible for me. I have a whole new aspect to my life that I did not have just a couple of years ago and I am a better person because of it.


Thank you so much,

Ron Mattoon
March 2012

 



COMMENTS ON HEALING ARTICLE

 

I read the article "The Other Side of Healing" by Kimberly Unger LMSW. (Mar 2012, WotW). I have to say its the best, shortest, most complete description of what we go through I have ever seen or heard. Thanks for that.

2004 for me at M D Anderson, I don't remember her from that time. Although I spent 6 weeks there after my nightmare surgery when it came apart literally a few days after my Laryngectomy. To this day I don't believe even my wife really gets it. Im just not the same person I was. I'm sure, except for my Nurse Practitioner daughter, no one else even has a clue. I'm well physically along with family. Thank you God and to people like Kimberly. I have 2 Grand kids now, one 9 months, and one 4yrs 3 months, both girls. I hope you and yours are doing well. Life goes on or so they say. I still have good days and bad. I believe I always will. I was a out door sportsman type person who's life was turned upside down. I find if I reflect to much or do not stay busy it allows to much reflection. I despise pity from anyone. Especially from me. Lord knows there are so many who are much worse off than I will ever be.

I would like to say thanks for the very thoughtful insightful description. She has truely found her calling.


Thanks and be well,

James Posey,
class of 04 Dec 28th

 


 

COUNTING THE YEARS



Thanks for all your work on WW. My heroes, you and your support staff!

Bob reached his 10th anniversary today! Another ten will get him to 77 – that would be a bonus of seven, given we are allotted three score and ten!

Each and every subscriber on this site is an inspiration for me, just the carer and partner.


May God bless you all.

Pat(ricia)
Queensland, Australia
 

 

 

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 41 new members who joined us during April 2012:

 

Dave Aitchison
Espanola, Ontario, CAN
Molly Bates - (Caregiver)
Chatham, IL
Tania Bernier- (Caregiver)
Tampa, FL
     
Sheila Binion
Cantonment, FL
Linda Bohart
Norcross, GA
Derek Chaplin
Hemet, CA
     
Billy Chappell
Dickson, TN
Wanda Chappell - (Caregiver)
Dickson, TN
Leo Compliment
Evergreen, CO
     
Tom Cooke
Summerville, SC
David Dodge
Raymond, ME
Jardine Espinos - (Caregiver)
Clarksville, VA
     
Phyllis Espinos
Clarksville, VA
Raheela Farooq - (Caregiver)
Chino, CA
Betsy Fein
Red Bluff, CA
     
Lupita Garza
Donna, TX
Kasey Herchenroeder - (SLP)
Carmel, IN
Jerry Hickman
N. Platte, NE
     
Sue Hord
Redmond, WA
Don Johnson
Burnaby BC, CAN
Michael Keenan
New Fairfield, CT
     
Ken Knuckle Jr.
Tucson, AZ
Sarah Kramer - SLP
Chicago, IL
Nancy Krovitz - (SLP)
N. Andover, MA
     
David Mathews
Cape Town, S. Africa
Bob Meister
Arlington, TX
Jim Nielsen
Rapid City, SD
     
Loretta Pelc - (Caregiver)
Louisville, KY
John Perkins
Aylett, VA
Marjorie Perkins - (Caregiver)
Aylett, VA
     
Kathy Poirier
Dresden, Ontario, CAN
Robin Solomon - (Caregiver)
Jacksonville, FL
Virginia Solomon
Jacksonville, FL
     
Jim Thompson
Speedway, IN
Ray Leon Walker
Winter Park, FL
Darlene Welker
Houston, AR
     
Della Wethington - (Caregiver)
Mason, OH
Gerald Wethington
Mason, OH
Katie Westfoff
Chatham, IL
     
Janet Wilbanks
Martin, TN
Mark Quigley
Port Saint Lucie, FL
 

 

 

WebWhispers is an Internet based support group. Please check our home page for information about the WebWhispers group, our email lists, membership, or officers.
For newsletter questions, comments or contributions, please write to editor@webwhispers.org
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Disclaimer:
 
The information offered via WebWhispers is not intended as a substitute for professional medical help or advice but is to be used only as an aid in understanding current medical knowledge. A physician should always be consulted for any health problem or medical condition. The statements, comments, and/or opinions expressed in the articles in Whispers on the Web are those of the authors only and are not to be construed as those of the WebWhispers management, its general membership, or this newsletter's editorial staff.
 
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