December  2006

 


 

 

Name Of Column Author Title Article Type
News Views Pat Sanders Dutch Helms News & Events
News Views Pat Sanders WW  Changes News & Events
Voice Points Caryn F. Melvin, Ph.D. CCC-SLP Laryngectomee Rehab Education-Med
Web Whispers Columnist Terry Duga Dutch's Funeral Experiences
My Neck Of The Woods I.M. Lucky II Acceptance Experiences
Between Friends Donna McGary Science Of Sleep Experiences
Practically Speaking Elizabeth Finchem Grieving Experiences
Vicki's Midnight Train Vicki Eorio Doing Nothing Well Experiences
A Scottish Accent Rosalie Macrae Harry Experiences
New Members Listing Welcome News & Events

 

 

 

 


We have known, for sure, since Dutch Helms shared the news with us on our email list in early June, that his cancer recurrence was terminal. Through his articles and his emails, he had been sharing his reports on what was happening with him, healthwise, for a year prior to that confirmation. His physical body left us November 1, 2006, but his spirit will live on with this organization, which represents what one man to do to change and improve his part of the world. Ten years ago, he put a notice on the Internet and asked for other laryngectomees to join him in exchanging emails and in December, 1996, there were ten who had reached out from over land and sea to answer.
 
As of December, 2006, we have 1700 members to carry on with learning and sharing. Over 200 of our members are medical professionals. We have vendors who are interested and helpful and, above all, we have many appreciated caregivers listed in that number.
 
We have people ready, some of whom have been trained by Dutch, to run various parts of WebWhispers and we will go on from here. Today is Thanksgiving and I give thanks for Dutch, his ideas, and his hard work in building this organization. I give thanks for having found his group, for having met him and for being able to call him friend.
 
Terry Duga, our VP Finance and Administration has written a report and brought photos back from the graveside and memorial services and that follows. I would invite you to also go to the Founder's Page, under About Us on our web site, for more information about Dutch.
 

 
There have been some other changes in WebWhispers this last month.
 
Our long time WW President, Murray Allan, has resigned and we thank him for his years of service. Murray has been our President since 2000 and was Vice President for a year prior to that. During that time, WebWhispers has quadrupled its membership and developed many programs to aid laryngectomees around the world. We wish him the very best in whichever endeavor he devotes himself to next.
 
List Manager Michael Csapo, has been appointed VP Internet Activities, and we welcome him to the Executive Committee of WebWhispers. His new responsibilities encompass the mechanics of running the email lists, membership of these lists, including the changes, additions, and removal of all members from those lists. He is fortunate to have our Chief Moderator, Barb Stratton, and they, together, will be responsible for all training of new moderators.
 
I have been appointed by the WW Executive Committee to the office of President for the remainder of the present term. (Next election for this office will be Dec 2007 for a two year term.) I am honored to be able to serve in this position and will do my best to see that our group continues to grow and to offer support while following the purpose of laryngectomee rehabilitation.
 
To tell you how I came to work with laryngectomees. I was diagnosed with vocal cord cancer and began radiation in 1994. That was followed by a laryngectomy in Mar 1995. About 6 months later, I attended the Kirklin Clinic Head & Neck Cancer Group in Birmingham, AL and, shortly thereafter, began HeadLines. There were very few newsletters devoted just to educating laryngectomees and it became a well known newsletter, with good stories by larys and articles by professionals.  It was much copied by local club newsletters all over the world. You will find 10 years of HeadLines on the WW site and the articles are still worth reading.
 
I was a member of the online Larynx Cancer Group and the Compuserve Cancer Forum when, in early 1997, I heard rumors of a guy named Dutch who was getting laryngectomees together online. I joined Dutch's group in August 1997 and became active immediately. I started my official life with WebWhispers in 1999, as a committee chair in charge of the WW newsletter and of gathering information for the Hints section that became the Library on the web site. I have been VP Web Site Information since 2000 and served as Acting President several times during the years since. I worked in most areas of WebWhispers as I became Dutch's stand by moderator and my job encompassed more of the writing and organizing material for the web site, the lists, and the WW newsletter, where I currently serve as Managing Editor. Most recently, I took on the challenge of finding a company to design a new web site and I worked with the professionals as I learned. An almost bigger challenge was the moving of the content of this huge web site to the new site, which was accomplished with our talented volunteers.
 
I have received several awards from WW starting with the 1999 certificate for Internet Sage Extraordinaire but I mostly treasure the one in 2002, being the second recipient (the first being Dutch) of the WebWhispers Casey-Cooper Laryngectomy of the Year award.
 
Thank you for this opportunity.
 
Pat W Sanders
President
WebWhispers
 

 

 

 VoicePoints     [© 2006 Lisa Proper]
Coordinated by Lisa Proper, MS-CCC-SLP, BC-NCD-A, BRS-S ( proper.lisa@mayo.edu )

 

 

Laryngectomee Rehabilitation; Thinking Outside of the Voice Box

Caryn F. Melvin, Ph.D. CCC-SLP
 
 
The Speech-Language Pathologist (SLP) has a wealth of knowledge about communication disorders. Those of us who have specialized in laryngectomees have additional knowledge, likely acquired after formal graduate training, enabling us to treat this specialized population. We are well versed in methods of voice restoration, stoma cleaning and care, and all the paraphernalia that goes along with laryngectomy rehabilitation. We certainly are armed to treat the disorder but how prepared are we to treat the person?
 
If yours was the typical graduate experience you spent most of your time studying about diseases and conditions and little time learning about relationships and people. Practicum became a frenzied dance centered on cutting, pasting, gathering materials and making certain you had enough of the right activities to fill the hour. Likely little time was spent thinking about the client as a person, their family or what was important to them.
 
Traditional management plans for laryngectomees likely focused on communication goals; placement of an artificial larynx device (ALD), articulation, phrasing, cleaning and changing of a tracheoesophageal voice prosthesis (TEP) etc. And these goals would certainly make sense. But if that is the extent of the management plan, we are missing a significant portion of the problem. Certainly there are communication issues that need to be managed but other important concerns need to be addressed, concerns that involve and impact communication. These other concerns may include job, finances, marital relationships, self esteem, feeling of guilt and vulnerability and many other issues that impact the life of your client. Who addresses these issues? And more importantly what happens if these issues are not addressed?
 
Important pressing problems, that are not addressed, fuel the feeling of loss control, perpetuate feelings of vulnerability, and result in interesting behavior changes. An otherwise responsible, motivated person may become lethargic, angry, non compliant, seemingly unreasonable with regard to expectations. When it comes to attending and participating in speech therapy they may 'no-show' often, not participate in therapy, not complete homework assignments, and never master seemingly simple speech goals.
 
Thinking about working with more than the presenting speech issues may be overwhelming. You may be thinking, "How do I deal with all of that?" "That's Mental Health territory!" You may even realize you do not have the appropriate skills and feel uncomfortable addressing these types of needs. If you have been working in this field for any length of time there likely has been more than one occasion when you felt you needed to know less about the disease the person had and more about the person who had the disease.
 
If we buy into the argument that laryngectomy brings about more than just communication deficits and if we understand that the SLP is often the health care professional with whom the laryngectomee forms a long-term relationship, we understand we are charged with the responsibility to treat all of the issues that contribute to returning to a full, productive, and happy life.
 
Addressing these needs is easier than you may initially think and, while we are not counselors, per se, we can certainly borrow from the practice to better meet the needs of our clients. The alternative, not meeting these needs, can result in less than optimum rehabilitation. Simply by responding more appropriately to affect, we can make a world of difference in the behavior, progress and, ultimately, overall quality of life for our clients.
 
There are three important behaviors we can practice with our clients that significantly impact their progress. The three behaviors are presence, validation, and answering specific needs. Incorporating these three behaviors into every interaction with our clients strengthens the client-therapist relationship, improves therapy outcomes, and empowers our clients to take control of their life following laryngectomy.
Being present means focusing, listening, putting all other thoughts aside and paying attention, one hundred percent, to your patient. You can't fake good listening. You need to be honestly, sincerely interested in what your patient has to say. You cannot be thinking about your next client, what you are going to have for lunch, or the ENT resident that made you mad and ignored your recommendations. Additionally, your body language, gestures, posture, and facial expression need to reflect your interest. Our clients are smart. They know when we are faking it. When we fake our presence we send the message that our clients are not important. We lose client trust and the client - therapist relationship suffers. This can lead to less than desirable client behavior that can significantly interfere with rehab progress.
 
Being present means actively listening. Well know psychotherapist Jeanne Safer, PhD, defines good listening as, "a combination of curiosity, concentration, and commitment, a willingness to follow another's point of view with no preconceived notions. It's also very active. I lean forward; I cock my head, and often find that I've unconsciously assumed the same posture as the speaker. My focus is not on me."
 
The second behavior, validation, sends the message that feelings and issues are important and deserve time, attention, and understanding. Validation sends the message that concerns have been heard and they matter and you have been fully present with your client. And often validation is all that is needed. Most clients do not want their problems solved. They are capable adults who, prior to the surgery, were leading normal, productive lives. They solve their own life problems. Implying they need our assistance to solve problems sends the message they are incapable and creates feelings of disempowerment. Not feeling in control, feeling as though you have lost your power makes it difficult to handle difficult life situations. Validation can turn the situation around. When one feels they have been heard, that another human being agrees that the situation does warrant these powerful feelings, there is little that cannot be handled, made peace with, and overcome. And validation is the easiest, kindest and most therapeutic way to respond to our clients.
 
The following situation is an example of the need for validation and some ways to respond to the affect. A patient may walk into your office for an appointment, sit in the chair and say something similar to this, "I don't know what to do. My job may let me go because they don't think I can handle my sales position anymore with my voice the way it is. My wife is worried because we're already in debt. I still have 23 radiation treatments left and I feel tired all the time. I don't think I can do this anymore". Validating this client's emotional state could easily be done by responding in one of the following ways; this list of responses is by no means exhaustive.
 
  • I hear that you are struggling with your _____ (job, finances, wife, etc). This is understandably a difficult time for you.
  • I hear how worried you are. You have been through so much.
  • That all sounds so frustrating, I can't imagine what you are going through.
  • This is a lot to handle. It's normal to feel like you want to give up when you are overwhelmed.
 
Validation is simple and lets the client know that their concerns are real, valid and make sense. There is great power in telling your story and having another human being acknowledge that your perceptions and feelings are accurate, justified and understandable.
 
The third behavior involves a question and responding honestly to the given response. If you are like most speech pathologists, you have an overwhelming desire to help your clients. After all, that's why you chose this profession. You learned all about laryngectomy rehabilitation in graduate school and know much more than your clients (at least initially) about all the alternatives to voice rehabilitation, ways to care for the stoma, support groups and just about anything else 'laryngectomy'. You have a wealth of knowledge to share and you are eager to make a difference, to help, to heal. But are our clients always ready to hear it? The answer is not always!
 
We have knowledge about the nuts and bolts of laryngectomy but we do not know about our client, how they learn, what they are feeling, and what they are ready to hear. Only they know what is important and what they are ready to hear, process, and act upon. But so often in the midst of our good intentions, we forget that the therapy is for the client and not an opportunity for us to prove we were paying attention in graduate school. It is important to remember that prior to the laryngectomy, our clients made good decisions. They managed their problems and functioned well. The only difference now is they were thrown a curve ball and need the knowledge and expertise you possess to start putting their lives back together. So rather than telling clients what you think they need to hear, ask them this important, thoughtful, empowering question "What do you need to know?" And then respond only to the answer of that question. Answering that question appropriately allows your client to know they have been heard and are important. It permits them to guide the flow of information and gives them exactly what they need at the moment to begin to put the pieces of their lives back together.
 
Working with individuals who have undergone a laryngectomee is a privilege and a special challenge. The challenge comes in not only meeting communication needs but in recognizing and responding appropriately to, perhaps, more pressing, larger issues, that impact our ability to make progress with regard to speech issues. By thoughtfully, intentionally, reconsidering how we 'sit' with our clients we can make such a difference in how quickly and completely they regain control and get back to their lives.
 

 
Caryn F. Melvin, Ph.D. CCC-SLP
 
Dr. Melvin received her Ph.D. from the University of South Carolina (USC) in 1994. Her clinical work is at the WJB Dorn VA Medical Center in Columbia, SC. Dr. Melvin has been with the VA for 13 years. Her clinical focus is adult neurogenic speech and swallowing disorders as well as speech rehabilitation for persons with head and neck cancer. Additionally she is an Adjunct Assistant Professor at the University of South Carolina. She teaches a variety of courses for both on campus and distance education students in speech-language pathology. Dr. Melvin is very active in the laryngectomy community. She re-established the Greater Columbia Area Lost Cord Club and lectures extensively in the southeast on laryngectomy rehabilitation. Dr. Melvin is listed as a qualified voice instructor for the International Association of Laryngectomees (IAL), a member of the faculty for the IAL Voice Institute and Director at Large for the IAL.
 
Dr. Melvin is currently enrolled in the Ed. S program at USC pursuing a degree in counseling with an emphasis on marriage and family. Her latest educational pursuits stem from her observations of patients and families during her years of clinical practice. Communication disorders do not happen to a single person, they happen to a family. Intervention should be holistic, include the family, addressing the communication deficits as well as the emotions that come from the communication disorder in order to achieve the best rehab outcome. Dr. Melvin is currently working with the newly formed Foundation for Voice Restoration on a presentation for laryngectomees and their families as well as speech-language pathologists on navigating the road to recovery after cancer and voice loss.
 

 

 

   WebWhispers Columnist
                                                                                  
Contribution from a Member
 

 

Dutch's Funeral

Terry Duga
 
 
I had intended to drive to Cleveland on Friday and spend the night. However, those plans changed when a friend of mine expressed a desire to attend the funeral and suggested that we just drive up and back in one day. So, we set off at "gosh awful" in the morning and drove hard to get to the cemetery on time.
 
We pulled into the cemetery about 9:45 a.m. on Saturday, November 18, 2006. The worker at the entrance asked if we were there for the Helms funeral. When we replied that we were, he told us to drive the circular drive and join the cars that were already waiting for the funeral director to arrive. We did as directed and got out of the car to stretch our legs and greet the others who had arrived. Although it was cool, the sun peeked out from time to time.
 
Mike Muzslay, Dutch's good friend and caregiver, introduced himself to me. What a wonderful man he is! From him, I learned that Dutch was known as "David" or "Dave" to his old friends. Dutch is an appellation that came with the military.
 
At the appointed time, we all drove to the grave site, where the Air Force honor guard was waiting. The honor guard carried the urn containing Dutch's ashes to the small bier on the gravesite. Then, solemnly unfurled our nation's flag over the urn and, with practiced precision, folded it and presented it to Mike.
 
Reverend Thomas Henderson of St. Paul Lutheran Church conducted the grave side services. The Honor Guard presented a 21 gun salute, followed by taps. The cemetery is near the airport. Appropriately, planes passed overhead during the ceremony. I hope they keep Dutch company.
 
Honor Guard
Folding the Flag
21 Gun Salute
WebWhispers Group
Mourners
Mike & Pam Muzslay
 
The mourners gathered for a while to chat and take pictures. Then we got into our cars to drive to the church. I had thought to just follow the others, but losing the lead cars, due to traffic, as we left the cemetery gave lie to those plans. Fortunately, we had printed out directions from the internet for just such an event. St. Paul Lutheran Church is on a main street in Berea. It sits among the different schools that Dutch attended as a boy. The mourners consisted of two groups, the "Dave" people, family and friends who know Dutch when he was growing up, and the "Dutch" group, the WebWhispers family of whom Dutch was the spiritual father.
 
Dutch had asked me to burn three songs into a CD to be played at his memorial service - Wagner's Meistersinger Overture to be played as an introduction, an a capella version of the Star Spangled Banner, and Requiem for a Soldier from the mini series Band of Brothers. Dutch had assured me that the church had state of the art sound equipment to play the music. I had tested the disc on my home CD player and it worked. But, the CD player at the church ended up being a small boom box. Worse, the player seemed to not be able to skip tracks. After some delay, Dutch's nephew, Mark, got the disc playing.
 
Reverend Henderson knew Dutch and his family. He told stories of his growing up, about his mother and how they both had a good sense of humor and liked to set people up (mmmmm, state of the art music playing abilities????). Rev. Henderson talked about WebWhispers and read the obituary published on our site. He then asked if anyone else wished to speak. Mike, Dutch's long time friend and caregiver, told about meeting Dutch in junior high school and growing up with him in Berea. He spoke of how Dutch volunteered to fly point in Viet Nam. That meant that he flew a Cessna type airplane to an area until the enemy started shooting at him. At that point he reported and soldiers were sent in. He flew more than 300 missions. Mike said that Dave was his hero. This was a part of Dutch that was new to me. Even when sharing a cabin on a cruise or a room at an IAL convention, Dutch, in his typical humble fashion, did not discuss his war exploits.
 
Mark, Dutch's nephew, spoke of growing up with Dutch and living with him in DC. He was glad that his uncle became his friend. A professor from Heidelburg College spoke of how Dutch organized Volkswagen stuffing, always intent on beating the competition. He told how Dutch worked to earn a year studying in Germany. He also spoke of Dutch's sense of humor.
 
Our own Jeanne, spoke of meeting Dutch in chat rooms and becoming a close friend of his. She joined WW to help with the site that Dutch built. I spoke of finding WebWhispers in the early days and watching it grow from a small list, of a few people talking, to a world wide organization of over 1600. I spoke of how Dutch worked tirelessly to keep things going. I said that I had christened him the god King, for he was an icon and our leader. He was one of the greatest men I have ever had the honor to know.
 
Pam Muzslay then told of Dutch surviving her singing when he was living at their house after his laryngectomy and of his sharing a bathroom with their daughters. She then, beautifully, sang, "If I Want To" a song that aptly pointed out that you can do that to which you set your mind.
 
After the service, everyone gathered in the parlor and visited over cookies and coffee. I noticed, and sampled, some rolled wafers filled with chocolate creme and sprinkled with powdered sugar. Dutch would have loved them.
 

 

 

Acceptance

I.M. Lucky II
 
 
Acceptance is one of the greatest challenges we, as human beings face. This challenge is faced by all human beings who experience an event of catastrophic proportions, directly or indirectly. The dictionary defines the word acceptance as: to receive willingly, to agree to, and to better serve our purpose, I am going to add the words: unto one's self. There is a primary reason why human beings are shaken to their very core in the face of trauma and why the greater the surprise, the more deeply the core is pierced. Each of us carry within ourselves an illusion, which I will call a 'bubble'. This 'bubble' plays an important role in our day-to-day lives, and without it, life's unpleasantries would overwhelm us. Everyone is aware of the fact that murder, rape, war, death, hiway accidents, plane crashes, terrorist attacks, tsunamis, hurricanes and cancer are very real events. What the 'bubble' does is to free us from being overwhelmed by all of these very real possibilities, but at a price. Like the adage states: you don't always get what you pay for, but you always pay for what you get.

 

Let us now follow John Q. as he travels down the path toward acceptance. He knew something was not right. He couldn't put his finger on it, but whatever it was couldn't really be real until it was spoken. One day while shaving, he looked into the eyes that met his in the mirror and got the distinct impression that he was looking at a 'dead man walking'. His throat was wrong. He decided to see Mr. ENT. Mr. ENT was a nice person, in a word, jovial. He asked a few questions then put a Kleenex on John Q.'s tongue and a depressor on top of that, adjusted the light on his headband and stuck a mirror down John Q.'s throat. After that, with a worried look on his face, he grabbed a box with a long rubber line extending from it with a light on the end. He then adjusted a lens attached to his head band, kind of like a jeweler might use to look at a diamond, and said: "We need to run this light up your nose and down your throat so we can have a 'look see'. Now just relax." Yeah right John Q. thought. After the 'look see', Mr. ENT had a very grave look on his face as he pulled up a chair facing John Q. in the Big Chair. He said: "Mr. Q., you have a very large tumor on your vocal chords. I can't say how serious it is until I do a biopsy." John Q. said: "Well Doc, we both know what it is, don't we?" The word remained unspoken.

 

Stage 1-the 'bubble' has been pierced, total shock
          ...and disbelief ensue.

 

Mr. ENT begins to speak as if he were addressing a child. John Q. is looking at him but hears nothing except the thoughts running through his head. He wants to tell Mr. ENT, you don't understand. See, I have an agreement with Mr. Life, you know, like Moses and Yahweh, and all those bad things that happen to all those other chumps out there aren't supposed to happen to me. I placed my trust in that agreement, and my faith that it was true.

 

Stage 2-trust and faith are shattered like glass

 

Seventy-two hours of lost days and sleepless nights later, John Q. was lying on a bed in the hospital, in the section where people are put awaiting surgery, whatever that is called. He was calm; the calm soldiers feel when battle is imminent, or athletes before a big game. This was serious, real time, real life. No illusions allowed. This was confirmed by the looks on the other faces as he scanned the room. Two hundred and forty minutes later he awoke in the recovery room with a curved piece of PVC sticking out of throat. Thirty minutes later, Mr. ENT, his usual jovial self, you can't help but like the guy, entered the room and delivered the verdict and gave a rundown on what would happen next. For the first time the WORD had been spoken, now it was really real. That night John Q. felt the beginnings of anger, resentment and self-pity creeping into his heart. What did I do to deserve this? Why is this happening to me? I know lots of people 'worser' than I am! Why is God punishing me? I guess I pissed Him off but I swear I don't know how!

 

Stage 3-the heart becomes poisoned by anger,
          ...resentment and self-pity. Not a pretty sight.

 

Four weeks later, halfway through his treatments of bi-weekly three-hour Cisplatin drips and two-a-day neck nukes and unable or disinclined to do much more than laze and think, he did just that. He had no one to talk with except that voice inside that makes you feel guilty when you do something bad and proud when you do good. The Self. The first question he asked his Self was how he could have ever been so naive as to think nothing like this could ever happen to him? Self replied: "Remember the pain you felt when the 'bubble' burst?" "Of course" John Q. replied. "What was the real secret the 'bubble' kept from you," asked his Self. "I'm not sure" John Q. replied, "get on with it." "The secret the 'bubble' held was that you were living under the illusion that you were not vulnerable to life and all that goes with it. Out of six and a half billion people on this planet what quality do you possess that sets you apart from the rest, that grants you immunity from life's unpleasantries? Do you have a get out of jail free card or a set of dice that come up seven every time?" "Who do you think you are to talk to me like that?" John Q. asked. "You know who I am. The question is, now that the 'bubble' is burst and the illusion is dispatched, will you approach life seeing it in a new light and with a greater understanding and appreciation? Or will you stagnate in anger, resentment and self-pity?" John Q. said he supposed he'd give it his best shot. His Self said: "That's all I ask."

 

Acceptance may play as large a role in the treatment of diseases as any of the other components. No one can be truly healed who carries anger, resentment, self-pity, loss of trust and faith and self-condemnation in their heart. What good is a body healed if that body is sick at heart? Acceptance allows us to face each of these feelings and their causes head on, acknowledge their very real existence, examine them and by so doing, dismantle them one by one. Armed with the acknowledgment to ones self of this vulnerability allows trust to be placed in its more rightful place. Trusting that no matter what obstacles life presents, somehow, some way, the challenges will be met and if possible overcome. When faith is placed in its more rightful place, a greater faith in ones self, friends, family, future and a Higher Power manifests itself.

 

For those who have endured and accepted, take a bow, you've earned it. For those who haven't accepted my hope is that this article will in some way help you to do so. For those unable to endure, or who endured to no avail, may they find some solace, no matter how small, in knowing that being defeated is not the same as being broken. Nothing can touch that which makes you, you, your Spirit, unless it is allowed to. May Your Higher Power Bless You. May Peace, Love and Contentment Be Your Daily Companions.

 


 

[Editor's Note: I.M. Lucky II is the pen name of one of our WW members. Should you wish to contact him privately, you may send an e-mail to me, Donna McGary, editor@webwhispers.org and I will forward your message. Thank you for understanding and respecting his privacy.]
 

 

 


 
 BETWEEN FRIENDS          Donna McGary
                                     "That which does not kill us makes us stronger"
 

 

The Science of Sleep

 

 

In October, my column was about my experiences at Massachusetts General Hospital as a participant in a study on the effects of anesthesia. This month I want to elaborate as to why I was a participant. According to Dr. Emery Brown, Harvard-MIT Division of Health Sciences and Technology, and the lead investigator, those of us who breathe through a stoma are critical to this research.

 

The study of anesthesiology is particularly fascinating for Dr. Brown and his colleagues because, although “the techniques of putting someone under” are extremely evolved, we still don’t know how the brain is affected by the experience. “Very basic, fundamental knowledge is missing,” says Brown. “Anesthesiologists carry out a task they don’t really understand.”
 
Anesthesia produces anxiety in many people. It causes a loss of control at a time when, likely, we are already anxious about a painful procedure with a sometimes uncertain outcome. It is not unusual for patients to be more worried about the anesthesia than the procedure itself. Despite their limited understanding of exactly how it works, anesthesiologists are very skilled at administering it and it is exceptionally safe. Only 1 in 250,000 patients suffers a fatal accident under anesthesia, a fact which does little to dispel some people’s apprehension.

 

Interestingly, the first successful demonstration of ether anesthesia occurred at Massachusetts General Hospital on October 16, 1846 at 10:15AM. Drs, Morton and Warren removed a congenital vascular malformation from the neck of 20 year old printer, Edward Gilbert Abbott. After the surgery the patient declared “I did not experience pain at any time although I knew the operation was proceeding.” Dr. Warren remarked, “Gentlemen, this is no humbug.” Findings were published in the Boston Medical and Surgical Journal on November 18, 1846.

 

Dr. Brown’s study is examining the actual process of going to “sleep”. Although commonly used, the word “sleep” is a misnomer. As he explained it to me during the screening process, anesthesia involves analgesics (loss of feeling), a loss of movement, amnesia (or loss of memory), and hemodynamic stability, meaning keeping your body functions stable. It is a loss of consciousness but not all parts of the brain are affected the same way. Understanding which parts and at what stage during this process they are affected would allow anesthesiologists to target just those particular areas. This is not unlike the more specific and precise radiation and chemotherapy treatments now available. Most of us have probably experienced “conscious sedation” at some point- a good example of amnesia and analgesia- although we were able to follow directions such as swallow , we experience no discomfort and have no memory of the procedure afterwards (nor, in my case, the detailed questions I insisted on asking one of my long-suffering cancer docs following a bronchoscopy! HA!)

 

Now for the reason this study needs us. Typically when a patient is placed under anesthesia, he is allowed to go to sleep and then a breathing tube is placed in the airway to administer oxygen.. However a primary objective of this study is to observe the transition from being awake into the state of general anesthesia. To do this with subjects who don’t have a tracheotomy would require a breathing tube be inserted while fully awake and have the patient tolerate that throughout this process- clearly something that would be impossible. By inserting a small trach tube in the stoma and administering oxygen through that as needed, airway care and safety standards are maintained throughout the procedure and the process of “going under” can be observed incrementally.

 

Throughout the process, an EKG measures changing brain activity, and blood work is also done frequently to monitor additional changes. At this time, testing is being done using auditory stimulus- the buzzes, beeps and tones I listened to through headphones and identified by pushing a button. Additional studies will employ somatosensory stimulus via a small vibrating ”buzzer” placed on the ankle and stage three will be a word task. In each case the procedure for measuring the changes during the administration of the anesthesia will be the same.

 

Dr Brown recently told me, “While we are at the initial stages of analyzing the data, what we are seeing is that to have the state of general anesthesia, brain regions don’t probably need to be totally shut down; it suffices to alter their level of activity. What we are trying to understand: is there any systematic way these changes occur as a function of the type of drug being used in the area of the brain where that drug may be acting.”

 

Material for this article came from an article in the Boston Globe on Sept. 11, 2006 by Andrew Rimas profiling Dr, Brown, titled “ A Seeker of Anesthesia’s Secrets”. (I received written permission from Mr Rimas to use it for this column) as well as personal correspondence with Dr. Brown.. For more information about anesthesia there is an interesting web site called “The Unusual History of Ether” which provided the details about the first successful demonstration. That surgical theater is preserved intact at MGH and is open to the public.

 

For further information on this study, including details on participating, you may contact me directly at editor@webwhispers.org and I will reply to you personally.
 
Donna
 

 

 

    Practically Speaking ...
                                                                                
By Elizabeth Finchem, Tucson, AZ
 

 

GRIEVING

Elizabeth Finchem

Practically speaking we need a break from the series of alaryngeal speech articles to grieve together. The events of the past months remind me of the early stages of my laryngectomee rehabilitation. My focus was locked onto learning esophageal speech as fast I could master the technique. My speech therapy efforts were interrupted by a whole array of stuff I had not planned on. The first was radiation therapy sessions with the usual cumulative burn, loss of energy, and struggle to eat even small meals. Another ES training interruption was the need to stop long enough to learn how to use an electro-larynx on a neck that was so very swollen, hard as a rock, and had no feeling. This was before I knew about intra-oral adaptors. Intelligible speech on the phone was a 'must have immediately' since my husband traveled 2-3 weeks at a time. I had three sons away at college, and three children at home; the youngest was six and just learning to read. Priorities change. Some things, such as taking time to deal with our own grief, get pushed into the background. Then one day a small occurrence will trigger your need to deal with the grieving again, perhaps years later.
 
In the months following my laryngectomy I read some of the books my friends provided. One of the best was "On Death and Dying", by Elisabeth Kubler-Ross. I read most of it. I had no plans for dying any time soon, there was too much to do. However, her list of steps we go through as we grieve has stayed with me over the years, and served their purpose on so many occasions. They do not always appear in the following order:
 
Denial, Anger, Bargaining, Depression, Acceptance...Yep, I could identify every one of them as I thought about the loss of my laryngeal voice that had been good enough for radio work. It had only been a few months since I had read our church's Christmas Eve Service "Story of the Nativity" that was aired on our local ABC station.
 
Denial: The doctors certainly denied the severity of my illness for nine months. I never smoked so we all passed it off as 'flu' and chronic sore throat until something was obviously growing in my throat. Even as we waited for the pathology report, we all agreed I was too healthy to have cancer. They called it pseudo-malignant even after the tumor was removed.
 
Anger: You bet! I had my anger ready and aimed for the telephone receptionist that said, "I don't talk to machines and hung up". My sister-in-law heard my EL on the phone and asked, "Will you always sound like that?" Too often, I was taken as a prank caller. My daughters assertively ran interference for me in the stores when clerks spoke very loudly assuming I had lost my hearing also. I wanted to scream....if only I could then.
 
Bargaining: While waiting for pathology lab results I made a "to do" list. Dear God, it cannot be cancer. Who will take care of my family? I want to see my children grow up, graduate, marry and have my grandchildren. I still want to finish my education, master the French language, go back to Europe again, start a business, and more.
 
Depression: Although I kept myself busy with all of the above, I was also actively starting the Kazoo Speakeasy (still going), speaking to school children and....there were still days when I was pretty low. To the point, one night I literally had to choose right or left. Walk right to the Bridge, or left to continue walking and thinking about what laryngectomy had changed in my life. Every time I reached the corner, I had to choose again. I didn't know why it was getting harder to stay "up beat". Eventually, we found out I was grossly hypo-thyroid, and nobody on my medical team had mentioned it. My surgical report didn't state my right thyroid lobe was removed. Radiation also had a role in the decreased thyroid function. It took 2 ? years to unravel the cause of my depression. Within 6 weeks of taking Synthroid my energy was back, weight dropped without dieting, new hair was growing, and ES was improving. Depression was no longer a major concern.
 
Acceptance: This is not a snap! Reality check; my total rehabilitation was going to take longer than I thought. It was also going to take professional help from a family counselor to develop some problem solving skills I had yet to learn. Thanks to my wonderfully empathetic SLP's referral for a 'family counselor'. She also wisely suggested that I feel free to take some time off from speech therapy to heal a little more. Early ES progress had all but stopped. I worked with a psychologist long enough to realize he was another angel that showed up on time. I was shocked when he said, "You are the most responsible person I've ever met." Huh...I thought being responsible was a good thing? Over time I learned to give back responsibility to those who really owned it. The process was like peeling back the layers of an onion. When I reached the core I had to accept that I, as we all do, brought baggage to this life change called 'laryngectomy'. I had to accept that a marriage takes both partners. Eight years after my surgery our 31 year marriage was over. Divorce is never easy for anyone, but neither is living a lie.
 
Another set of the five steps had begun in my personal life. I truly believe that if I hadn't learned the process and the problem solving skills I never would have had the courage to make this life correction. Making those hard decisions opened a whole new phase for the life I've had over the last few decades.
 
For the past few months my focus was writing about alaryngeal speech. It occurred to me that with the reality of Dutch leaving us, we needed a break in the speech lessons to grieve and heal. I went to the local library to pick up a copy of Elisabeth Kubler-Ross & David Kessler's newest book (2005) "On Grief and Grieving". While completing the book the author was dying, and she provides some real first person insight for us. As a psychiatrist she made this study of death and dying her life's work. She fought to get the doctors and medical world to pay attention to their patients beyond the stitches and staples. So much of what is covered in this book can also be applied to our adjustment following laryngectomy and to other losses in our lives. While reading this book I could identify many angels who did show up in my life, on time, whether they knew it or not. I am still thanking them for their support when I needed their gift of caring.
 
Kubler-Ross validates that the process of going through the five steps may not be in neat order, but come and go as we are able to process the grief, usually a little at a time. It makes sense then that years can go by before a situation triggers our emotions and all the tears, that have been held back, pour out. Such a moment happened to me 16 years post op when I heard a well respected Social Worker's Presentation on Grief at a 1994 CAL Annual Meeting. She invited us to take a few minutes journey with her through the process we had all been through as laryngectomees. She talked us through the diagnosis of cancer, the necessary surgery that was in fact an amputation of the larynx, the loss of our laryngeal voices...our way of expressing our individuality, the radiation and other therapies that followed for some of us. For me, it was a very personal moment where I sat still long enough to allow in what I had skipped over. Somebody had suddenly removed my lynchpin. I sobbed and quaked for several minutes until there were no tears left to cry. I thank my friend who spoke that day. She got me over another bump in the process of really healing a very deep wound that still needed to be healed...given it's due.
 
In this book Kubler-Ross says that "we have tears to cry,...we should use this wonderful gift of healing without hesitation. Long periods of denial are worse than crying. Crying is much better, but you have to cry your own tears because no one can do it for you." Also taught at grief sessions is a rule entitled, "Grab your own tissue", for in our culture handing someone else a tissue is an unspoken way of saying, "Don't cry" when they must.
 
Some of the other Chapters discuss: Your Loss, Relief, Emotional Rest, Regrets, Angels, Dreams, Roles, The Story, Fault, Resentment, Other Losses, Life Beliefs, Isolation, Secrets, Punishment, Control, Fantasy, Strength, Afterlife, Anniversaries, Sex, Your Body and Your Health, So Much To Do, Clothes and Possessions, Holidays, Letter Writing, Finances, Age, Closure, and more. I hope some of the Chapter titles pique your interest in this book. It is one that I will have on my bookshelf as a permanent reference. It is written in an easy to read style, and contains such helpful guidance when we are grieving over something very personal, or called upon to help someone else who is grieving.
 

 

 

 

 

Doing Nothing Well

 

 

Had every intention of getting an article ready for Whispers on the Web over the Thanksgiving Holiday but ended up doing NOTHING!!!!! Of course I beat myself up today when returning to work, because I “wasted” the Holiday by taking naps, cooking stuff for the freezer, and then needing another nap. And not coming close to completing my list of "to do" items. But the food, while not the traditional meal, was good.

The animals loved my naps! They would beat me to the couch and one of the cats would pull down the blanket. Ever try to straighten out your legs with 2 cats, one huge dog, and one cat on your head on a small, cheap couch?

My love got to watch movies all day and into the night! That is happiness for him.

I have all kinds of valid excuses (in case you haven’t notice, I am an expert at rationalization?) for not being very productive. They include having had cataract surgery on both eyes within the last 2 months…….that's a pretty good excuse. You know how the effects of anesthesia can stay with you and in addition you are not to bend over or strain yourself in anyway. Permission from the surgeon to drive can vary from days to weeks so who could go shopping alone? (Be honest, who wants to go with their partner when the two of you have totally different purchasing agendas?)

These post-op instructions were my favorites of all post op instructions I ever received. Certainly gave me permission not to carry the laundry downstairs, not to bend over to do any cleaning that could not be accomplished with a vacuum cleaner, take naps as needed to clear out the anesthesia, stay away from the computer until both eyes had been corrected, snuggle with the animals who also kept me warm, have a hot toddy to sip on, (need to promote that blood flow you know), and be the ultimate couch potato without any guilt.

REALITY! Need to do the article, pay the bills, think about that ironing, put those pansies in the pots, answer the business emails, check again with the kids, do a Xmas list, and all of the daily things that must be completed.

The other reality is that Thanksgiving (for us) is just another day on the calendar. With many family members no longer with us and with children several states away establishing their own traditions, we have decided that a marketing community will not dictate how we spend our day/weekend/money or what our diet will be.

Just because I am a surviving cancer person, I am not going the route of how grateful we are on the 4th Thursday in November. Heart attack victims and folks with chronic diseases have similar challenges, both physically and emotionally. And I will not represent that we give thanks every day because our life does not work that way. We do give thanks and we do think about the alternatives and we do appreciate so many small things we ignored before. But this is not a big production for us.

So as soon as I can, the TV will be set to movies, I will be on the couch, the animals will be where-ever they want to be, the snacks healthy (and unhealthy) will be on the coffee table, a fire will blaze in the fireplace, and, we in our own way, will give thanks for all of our blessings.

From us to all of you, we send love and prayers during this holiday season and please be nice to yourself!

The train whistle seems louder and clearer as it passes through our little town. I love those darn machines and believe the train agrees with and joins us in sending our best wishes.

 

Vicki
 

 

 

 

 

by Rosalie Macrae
 
 
Every lary knows a Harry. That was not written intentionally to rhyme, by the way, but it is a good first sentence. It wouldn't be so eye-catching if it were a Julian or a Ralph. And every lary might not know a Julian or a Ralph. But it is a proven statistic in some book of records that everybody, not just larys, knows a Harry. Furthermore, I have yet to hear of a nasty Harry. Somewhere in the Galapagos there might be a bad-tempered tourist called Harold (never Harry, except to his boss) taking a swipe at a tortoise, but there are always exceptions.

 

Harry, in my laryngectomee circle, is a treasure who always carries spare batteries and Murraymints in his glove compartment. You can cry on his shoulder because in his inside pocket he always has multi-coloured packs of Kleenex. He is fearless and inspiring, and can baste chicken thighs on the barbecue to crisp and tender perfection. Watched with proprietorial pride by mother hen Vanessa who knew a good Harry when she saw him 40 years ago. Watched like a hawk in fact. He was her Harry. That was what gave me the great idea for Harry's birthday present next week.

 

Hawk. ... I had been in the garden last summer for one of their barbecues and a vulture -- or it might have been a sparrow-hawk, same thing nearly, both predators -- flew down to scare away the blue tits picking away at bits of salad spilled on the grass. Vanessa frowned. She is garden proud, and said Harry would have to get a bird table. I don't think he heard as he was wiping grease from the sleeve of a clumsy rival barbecuer who should have left it to the maestro.

 

Bird table. ... I wanted to get Harry something special, as he had collected my EL being repaired all the way up in Yorkshire about 300 miles from where I live. You have to go through a gateway to hell place, light-heartedly called Spaghetti Junction, with about 30 traffic lanes, just to get there.

 

I would get him a bird table for a surprise. I wanted something unusual and old. And not too dear. In the garden centres they were mass-produced and plasticky and cost as much as an African multi-lingual blasphemous parrot.

 

As always, e-Bay had it. The photograph showed just what I had been looking for. A brown wooden cottage with a bright red roof, a carved bird already there to give the message, birds being a bit thick, that there would be fine nuts on this table, and it stood on three sturdy wooden struts. Just the thing for Harry's prize-winning olde worlde garden.

 

Someone else wanted it too but it was mine for £15--about $30. A bargain. The seller, a man called Al, thanked me for my prompt PayPal and mailed that it would be with me the following day. The postman came at dawn, and I had to sign for registered delivery. I waited for the table to be carried from the van. Watch this, dear neighbours.

 

But, strangely, the postman handed me a little package about the size of the first box of chocolates my first boyfriend could afford when I was ten-and-three-quarters. Horrible thought . I had vaguely wondered why the postage was so cheap on such a large item. That's right. It was a bird table for a doll's house garden. Exactly as it was on the photograph. Not three feet as I thought it said, but three inches..., if I had been wearing my spectacles. It rested snugly in the palm of my hand. My old boyfriend came over and had hysterics and phoned my daughter to share the guess-what.

 

I e-mailed the man called Al and told him it was my fault and I didn't
expect my money back, but thought he would be amused at my story. Al was delighted to hear from me. It transpired that the other bidder for the dainty table had been his best customer, a collector of vintage bijou dolls house things. She would be delighted, he knew it, to buy it from me at her original top bid.

 

But then I did something really mean. I said I was sorry but Al couldn't have it back. I knew someone who would love the joke. Harry will dine out on the bird table story. And Vanessa has just the place for it on her mantlepiece.
 

 

 

 

ListServ "Flame Warriors"

 

Terms of Importance

 

flame

 
1. n.   A hostile, often unprovoked, message directed at a participant of an internet discussion forum.  The content of the message typically disparages the intelligence, sanity, behavior,  knowledge, character, or ancestry of the recipient.

2. v.   The act of sending a hostile message on the internet.
 

flame warrior

 
1. n.   One who actively flames, or willingly participates in a flame war ... (Another Example Below) ...

 

Troller

Troller is looking for a response...ANY response, and he will chum the waters with complaints, insults, compliments, and inflammatory tidbits hoping that someone...ANYONE, will take the bait. Generally quite harmless - practices a form of catch and release. Nonetheless, he can upset the delicate ecology of a discussion forum. Once a forum becomes aware of his presence, however, all feeding activity ceases and Troller must move on to more promising waters.

 
Above courtesy of Mike Reed
See more of his work at: http://redwing.hutman.net/%7Emreed/
 

 

Welcome To Our New Members:

 
I would like to welcome all new laryngectomees, caregivers and professionals to WebWhispers! There is much information to be gained from the site and from suggestions submitted by our members on the Email lists.
 
Pat Sanders, WW President
 
 
We welcome the 20 new members who joined us during November 2006:
 

Ryan Blackstone
Chicago, IL
Annabelle Farren - Caregiver
Lake Panasoffkee, FL
Bill Farren
Lake Panasoffkee, FL
     
Richard Finn
East Dubuque, IL
Scott Fuller
Placerville, CA
Laurie Gallant
Brampton, Ontario, Can
     
Billy F. Gossage
Methuen, Ma
Ronald Mann
Alma, AR
Douglas McIntosh
Ann Arbor, MI
     
Jane Nicholson - Caregiver
Aiken, SC
Jean M. Porreca
Lowville, NY
Virginia Skipwith
Fort Worth, TX
     
James E. Sparks
Jacksonville, FL
Jerry Spector
St. Louis, MO
William R. Stiles
Cambridge, OH
     
Robert Sumpter
Pembroke Pines, FL
W. C. Taylor
Lancaster, SC
Betty Thompson
Fort Myers, FL
     
Marilyn Walker
Alexandria, IN
J. Harry Wintemberg
Ormand Beach, FL
 
     

 

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