December 2007

 


 

 

Name Of Column Author Title Article Type
News Views Pat Sanders Election Comments News  &  Events
News Views Pat Sanders Eating with Strangers Experiences
Voice Points Lisa Proper-Coordinator Head & Neck  Radiation Education-Med
Worth Every Penny Lanny Keithley Grow, or You will Shrink Experiences
A Scottish Accent Rosalie Macrae Out of Joint Experiences
Vicki's Midnight Train Vicki Eorio Journey Half Way Completed Experiences
Between Friends Donna McGary The Buzzer Experiences
Practically Speaking Elizabeth Finchem Happy Holidays Experiences
New Members Listing Welcome to our New Members News  &  Events

 

 

 

 

Election Comments

 

We have a comments section on our ballot of the current election, and these are most of the comments received as of the time I am writing this.  Others were simply Thanks, Good work, Good luck.  Did we have anything negative? One.  Overwhelming, as you can see, people like what we do and the way we do it.

 

1. Thank you all for serving and doing a great job! I'm on several boards myself and know how much work it is.
2. Keep up the Good Work
3. I have no real comment to make except to say that I visit the W.W. site daily, at least once, it is the most valuable thing about my computer, nuff said methinks, how I would love to meet you all in person. This from the bottom of my heart.
4. You are all doing Dutch proud. I'm glad to be associated with this organization.
5. Thanks for doing such a great job!
6. Thank you all for all you do for us...where would we be without you all......
7. I don't know what I would do without the support and information from this website. I don't miss a day when I don't read every email, been a lary since 3-21-05 and thats a lot of reading--Thanks!!!! You guys are doing a great job.
8. keep up the good work i learn a lot from you guys. i am not alone. thanks
9. Web Whispers is lucky to have such good people working for them..
10. These above people do a superb job and handling WW and I know others do also. thanks all of you for doing God's work and helping people. God Bless all of you
11. Am so pleased with the Website. It has been most helpful to me as I continue to recover. Things are going great for me.
12. Thanks for all the caring and time you provide to all of us survivers.
13. I am confident that these selections will do a great job keeping our wonderful web site alive and kicking!
14. Keep of the great work with the Club & on the WebWhispers site.
15. Thanx to all for the well run organization and for making it so easy for new members to be a part of it!!
16. The leadership has done a fine job and all that I have seen shows me that they care about what they do and sincerely want to help all Larys. Kudos to you all.
17. i am happy with present leadership.great job!!! thanks guys.
18. You all are doing a fantastic job!
19. Everyone that's served, and will serve, has done so with great dedication.
20. Thank you all for your service

21. You all are doing a great job. I have really enjoyed being a member of this web site. you all have also been a great help and inspiration to me. Keep up the good work.

22. I am proud to be a member of W/W but, more important, I am very proud of the officers who serve our club. Dutch I know is "bustin his buttons" with pride.

 

This newsletter will be published on the 1st day of December and the election will close the evening before.  Election results will be shared on the list, also, on December 1st.

 

 

Eating with Strangers!

 

Many laryngectomees have difficulties chewing and swallowing. Unless you are fortunate to have a big esophagus to start with, the narrowing of that passage can cause adjustments to be made in the way we eat. Some go on to need dilations and/or surgery. Most of these folks put up with it as best they can or learn to deal with it in their own way.

 

Soups, soft cooked vegetables, ground meats, broiled soft meats, sauces and gravies to help foods slide down, yogurt, cooked fruits all become part of the diet of those of us who have medium swallowing problems. We learn to take small bites, followed by sips of water, or whatever we are drinking, to ease the way of chewing and swallowing.

 

Families become accustomed to our being the last to finish eating or to not getting answers until the throat is cleared. They, hopefully, have learned to look at us when they ask a question. If not, then they should. I remember writing about that when I was a new lary. "Look at me!!", became a mantra! I have had people ask a question, never looking at me, when a nod or shake of the head would do well enough as an answer. A hand signal works as you signal OK, wave, or hold the hand up palm outward. All of which become useless if people are calling from the kitchen to ask if you want more cake (when you have a mouthful already). This is one time when using an artificial larynx does come in handy! A spoon against the side of a glass suffices.

 

When you have been a lary as long as I have (since March 1995) you fall into habits that work for you...or, at least, help.

 

I eat in local restaurants that serve foods that are not only good tasting but are easy to chew and swallow. I know the places and I know where I like to sit so the sun is not in my eyes and the music is not too loud. Some have lots of kitchen noises and chatter and I avoid those when I can. Places that echo, with voices bouncing off of hard walls and tin ceilings, make hearing a lary difficult.

 

I go to a support group at a local hospital that is for all types of cancer patients with an attendance of about 30 people per month. There are two of us who speak quietly. He has a partial laryngectomee and I speak with a TEP. Placement at the luncheon meeting table is important for me. If I can sit so I face the others straight ahead, I can speak to all others while looking in one direction. Turning side to side means my TEP voice is not heard except in the one direction I face so I avoid the middle of the table. I also speak more clearly if my neck is not turned. My TEP voice doesn't work as well when I turn sharply to one side or the other and I do better if my head is straight with my shoulders. So, at a U shape table, I am more easily heard when I sit either at the foot of the U or at what would be the rounded part of the table. We are understood better if people see our faces and a hand gesture helps. Even an AL isn't understood as well when your back is turned.

 

I have just returned from a trip where I ate out with people I don't know well and I had forgotten what work it can be. Some people will do the nice thing and make dinner conversation. Just as you are chewing your first bite, the lady across the table says, "And, where did you go today?" as she looks down at her plate and starts eating, leaving the silence hanging out there like a pall!

 

On the other hand, some of us went to a loud, raucous, place with balloons that pop, shrieks at syrup pitchers that spill but nothing comes out, kids opening doors of a waiter held box while a big black imitation spider comes out. When you signal a waiter from tables away and hold a hand up, he throws a roll to you. (http://throwedrolls.com/). Funny, I never once had to raise my voice to be understood. The waitress had to be reading lips because no one else could be heard either. I should have brought my Servox and gone around buzzing people. They would have thought I was part of the show. The 3 1/2 year old with us was so stunned that she just looked and didn't even talk! And I didn't have to. What fun!

 

Enjoy,
Pat W Sanders
WebWhispers President
 

 

 

 VoicePoints     [© 2007 Lisa Proper]
Coordinated by Lisa Proper, MS-CCC-SLP, BC-NCD-A, BRS-S ( proper.lisa@mayo.edu )

 

Head and Neck Radiation and the Speech Pathologist

Lisa M. Proper, MS CCC-SLP; BC-NCD; BRS-S

 

 

Deglutition and communication problems commonly result from one of any of the primary medical treatment modalities for cancer. These treatment modalities are surgery, radiation therapy and chemotherapy. The combination of two or more of these modalities increases the likelihood that speech & swallowing structures and/or organs will be impaired. (Sullivan/Fischer 1999). Speech Language Pathologists generally have a good understanding of the surgery a patient undergoes and its specific effects to the anatomy and physiology affecting speech, voice and swallowing. However, we are generally not prepared in the basics of radiation with or without chemotherapy, and as a result; we fail our patients in many respects. All Speech Pathologists who work with patients who have, are currently, or will go through radiation treatment to the head and neck MUST have knowledge of this medical treatment modality and more importantly, the results and effects of this treatment to the anatomy and physiology. We don't treat a patient without knowing the effects of a surgery, so why do so many speech pathologists treat patients without knowing the full extent of the effect of radiation treatment? Speech Pathologists must have knowledge of the basics of radiation treatment not only in general terms but how a particular type of radiation treatment to a specific area might/will effect the radiated tissue and it's surrounding tissue and structure. For example, if the tumor is based in the tongue base, it is not just the tongue that is involved, but depending on the radiation type, the structures of the jaw will also be involved in the radiation beam and will be affected by the radiation treatment. While this highly specific knowledge is crucial for adequate treatment of our patients, it is beyond the scope of this article. All treating speech pathologists are encouraged to be certain that they know which structures will be involved in the radiation field before speech pathology consultation or intervention occurs. One should also know the specific tumor site and staging; general effects of radiation treatment to the head and neck as well as specific effects of radiation on the anatomy and physiology for swallowing, speech and voice. The later two will be the primary focus of this article.

 

Not only is educating ourselves important but educating our patients is also extremely important. It has been noted that patient education is extremely effective in helping patients to more positively cope with the effects of radiation. Treatment and/or exercise provided by speech pathology occurring throughout radiation, including prophylactic treatment are also beneficial. However, when we are seeing a patient who will or who is currently undergoing radiation treatment, we also need to remember that these patients have a disease, they have cancer. Paula Sullivan (2002) reminds us that the impact of cancer and it's treatment includes not only damage to anatomic structures and impaired neuromuscular function, but also includes general debilitation; pain, probable depression, fatigue as well as probable reduced or poor pulmonary function, and/or gastrointestinal disturbance such as nausea, reflux, diarrhea, etc.

 

Prior to initiating the discussion on radiation treatment to the head and neck, an overview of head and neck cancer is necessary. The most common type of head and neck cancer is squamous cell carcinoma. Squamous cells develop in the cells lining the nose, mouth and throat. Additional and less common forms of head and neck cancer are lymphomas, sarcomas and tumors of the salivary glands. Head and neck cancers develop and grow based on the primary site in which the tumor arises. Spread of the cancer may occur in three general ways. The initial spread is from the primary tumor site to adjacent areas. The second, and a fairly common occurrence, is the spread of the disease through the lymphatic system to the lymph nodes. The most commonly affected lymph nodes are those located along the internal jugular vein, and this spread is the major reason for some form of neck dissection procedure. Lastly, head and neck cancers may also spread through blood vessels to distant sites within the body. This risk is closely related to whether the cancer has spread to the lymph nodes in the neck, the number of nodes affected, and their location in the neck. Lymph nodes in the lower part of the neck have a higher incidence of distant spread than those in the upper neck

 

The choice of treatment between the primary treatment modalities of radiation therapy, surgery and/or chemotherapy is dependent on the site of the cancer which includes consideration of its spread incidence along with the stage of the tumor or disease process. Early stage disease is generally treated with only one modality of surgery or radiation while those individuals with more advanced disease are generally treated with two or more modalities.

 

Radiation treatment is based on the fact that cancer cells multiply faster than normal cells and therefore radiation can kill cancer cells and not healthy cells. Healthy cells may become damaged but should recover. However, as Speech Pathologists working with individuals who have undergone radiation treatment, we know that recovery of these healthy cells does not always occur. Radiation therapy stops the cancer cells from dividing and growing, thus slowing tumor growth in which shrink or eliminate the tumor.

 

Radiation treatment is the use of high-energy radiation from x-rays, gamma rays, neutrons, and other sources to kill cancer cells and shrink tumors. Radiation may be delivered via external beams, internal means via radioisotopes and a systematic delivery treatment which circulates throughout the body. The most commonly used type of radiation therapy is external beam radiation. This is a method for delivering highly focused beams of high-energy x-rays to the edges of the tumor's location. This beam is generated from outside of the patient and is directed at the tumor site. There are no radioactive sources placed inside the patient's body. Intensity-modulated radiation therapy (IMRT) is the most common form of external beam radiation to treat head and neck cancers. This utilizes a computer controlled x-ray generator which allows for a three dimensional modulating radiation beam to direct a high intensity of radiation to the tumor while minimizing exposure to surrounding normal tissues.

 

Radiation treatment is based on a fractionation schedule. This schedule describes the total dose necessary to be given over a specified time with the best known number of treatments to provide that dose. The schedule is determined based on the surrounding tissues and structures involved and how they are affected while the cancer cells are being treated. Some tissue such as the mucosa, skin and salivary glands respond to the radiation early in the course of treatment. Luckily, later responding tissue includes the brain, spinal cord, bone and cartilage.

 

A typical radiation schedule includes radiation treatment 5 days a week for 6-7 weeks. Treatments are generally 15-20 minutes long but the patient should allow for 30 to 45 minutes at the oncology center.

 

The side effects to the head and neck tissues from radiation treatment are numerous and are discussed in reactions stages. Effects at the acute reaction stage may include alteration in taste, oral mucositis and/or stomatitis, erythema, xerostomia, sialoadenitis, dermatitis, fungal and/or bacterial infection, dysphagia, dysphonia, soreness and/or fatigue.

 

Alteration in taste or dysgeusia may be one of the first noted symptoms of radiation in the case of nasal breathers. Alterted taste occurs due to damage in cranial nerves VII, IX and X and lingual mucosa coupled with decreased salivary flow. Taste will eventually improve although these alterations may last up to 12 or more weeks. The terms mucositis and stomatitis are commonly used interchangeably within the literature, despite a slight variation in their definition. Oral mucositis is the inflammation of oral lining and lasts up to 4 weeks. This inflammation results from ionizing radiation and manifests as erythema or ulcerations in the tissue. Mucositis may be worsened by local factors. Stomatitis is any inflammatory condition of the oral tissue, including mucosa, teeth and gums. This includes infections of oral tissue as well as mucositis. Erythema is noted as a redness of the skin and/or mucosal lining. Xerostomia is dryness of the oral as well as pharyngeal and laryngeal tissues caused by the reduction in salivary flow. Salivary flow has been reported to begin to decrease after just one week into radiation treatment. Due to its extreme importance, xerostomia will be discussed in detail later in this article. Sialoadenitis is the inflammation of the salivary gland, which is generally short-lived. Dermatitis may last up to 2-3 weeks and generally does not affect speech, voice or swallowing issues. Infection which may occur at this stage is easily prevented with preventive measures prescribed by the Oncologist. It is extremely important that the Speech Pathologist reiterate Oncology's direction in this manner as infection can be one of the major causes for non-compliance in a patient.

 

Speech Pathologists may be of assistance to patients in all these areas by providing appropriate education and suggestions approved by their radiation oncology and otolaryngology teams.

 

Radiation effects on the head and neck in the subacute reaction stage include those symptoms listed above or a progression in the above symptoms. Additional symptoms which may appear at this stage include reduced mandibular excursion (Trismus) and soft tissue necrosis. Additionally, although rare, the patient may complain of shooting electric pains down the back initiated by neck flexion. This is a transient cervical spinal cord myelopathy known as Lhermitte's sign. The role of Speech Pathology in the prevention of trismus is a recent role for Speech Pathologists and I believe is paramount in the treatment of head and neck radiated patient.

 

Radiation effects on the head and neck in the chronic reaction stage include continuing xerostomia which is generally reported to be worst in the first two years after radiation treatment. Dental carries will be evidenced at this time and trismus may continue to worsen, especially if no exercise is done. Cervical myelopathy may also occur for the first time at this stage along with the more devastating effects of soft tissue fibrosis and atrophy, non-healing soft tissue necrosis, osteonecrosis and possible cerebral injuries. Fibrosis is particularly important to speech pathology treatment as it may lead to alterations in the elasticity of the oral tissue, muscle disuse and degradation, reduced range of motion of the muscles of mastication; deglutition and airway protection, may produce pharyngeal and/or esophageal stricture and reduce pharyngeal and/or laryngeal sensation. Trismus is generally thought to be caused by fibrosis and/or disuse.

 

For patients undergoing both combined radiation and chemotherapy, the effects have been noted as similar to those undergoing radiation treatment only with the exceptions of a noted increased dermatitis as well as prolonged mucositis/stomatitis. Additionally, in a 1993 article Lazarus noted a higher chance of developing post treatment dysphagia for patients undergoing both treatments. Further discussion regarding chemotherapy is beyond the scope of this article.

 

The effects of radiation on swallowing are well documented and continue to be a highly researched area. As aforementioned, dysphagia may begin in the acute stage but many times it may also develop1-40 years AFTER treatment (Lazarus, 1993). This author has seen several patients with post radiation induced dysphagia over 20 years post treatment. The dysphagic deficits in these patients tend to be extreme with poor response to swallowing intervention strategies. Because of this, Speech Pathology intervention at the start of radiation treatment is crucial. Logeman confirms this in a statement in 2006 in which she states "Encouraging the patient to contact his/her SLP should swallow worsen is critical, because a worsening of swallow function can mean disease recurrence or progression of tissue." A patient is only able to do this, if they have met with the speech pathologist at the initiation of radiation treatment. Lewin (2002) also makes the case that because the "Fibrotic changes continue to occur months or years after treatment, patients who have received counseling and know what to expect will be more likely to seek help if their ability to swallow becomes impaired". This area is definitely a topic of its own and hopefully, one for a later edition.

 

The ill effects of radiation on swallowing, led me to develop a pre radiation Speech Pathology consult for all patients who will undergo any form of radiation to the head and neck. Although, the area of swallowing prompted the initiation of the program, it became apparent that swallowing was only one of several areas which needed to be addressed with these patients. Helping the patient cope with radiation issues is now an important role of the speech pathologist at our facility.

 

One of the most common sets of patient complaints stems from xerostomia. Dry mouth? Big Deal! Yeah, you are right it IS a big deal, an extremely big deal! A healthy individual produces approximately 1.5 liters a day of saliva. Dry mouth, as a result of radiation treatment, is secondary to salivary gland dysfunction. Without adequate salivary function, saliva is reduced, thickened or even completely absent. There are three pairs of major salivary glands which produce the majority of saliva. The primary glands are the parotid glands which are located in the cheek in front of the ears and its serous cells produce 90% of stimulated salivary flow. The additional salivary glands include the submandibular glands, that are located under the lower jaw; and sublingual glands which are located under the tongue. Additionally, there are hundreds of minor salivary glands located throughout the mouth that are extremely important for oral/pharyngeal lubrication.

 

Saliva contains approximately 40 essential proteins, 13 electrolytes and 7 small organic molecules. Therefore, saliva does not just cleanse our mouth by hydration as is a common misconception. Saliva also prevents and protects not only our oral-pharyngeal health but also the health of our esophagus as saliva is the main component in esophageal acid neutralization. Saliva limits viral & fungal growth which causes dental decay and oral infection. However, the moistening properties that saliva provides to our mouth and throat are also invaluable as it aides in speaking, voicing, chewing and swallowing. Saliva removes leftover food particles. It helps protect the teeth from hot and cold. Saliva assists in the digestion of food. Without saliva, our favorite food would most likely not taste like our favorite food as saliva mixed with our food aides in taste perception. The sense of smell may also be reduced or loss because of loss of saliva. Saliva's role in our daily oral hygiene, communication and eating is invaluable and when that is further compromised by radiation treatment and in the presence of the disease process - It is a very big deal!

 

However, I am not yet done, praising the benefits of saliva. As one would expect, saliva also has an important role in oral perception and comfort levels. Think about when you have had an instance of dry mouth and how it hurt or how it may have been hard to swallow. Despite the fact that it hurt and that it was hard to accomplish - you could still physically accomplish the task of swallowing. These perceptions, which can be misperceptions in the area of swallowing, are many times, the reason why people decrease their occurrences of eating by mouth. In a multi-center study in 2001, Logemann et al., found that xerostomia does not alter the ability to move liquid and non-sticky pudding consistencies through the oral cavity but that it did effect the overall sensory perception and comfort level of the patient. This is an extremely important finding. In fact, I site this article in my pre-radiation consults to my patients, in order to educate them on the importance of continuing to swallow throughout the radiation treatment protocol.

 

Symptoms of Xerostomia are many and may include patient complaints of a sticky, dry mouth and trouble chewing. Chewing difficulties may also include difficulty controlling a bolus and reports of increased occurrences of biting the tongue and other oral structures and tissues. Trouble in initiating a swallow is a frequent complaint. (One is reminded to consider the fact that it takes less than 1.5 ml to initiate a swallow.) Sticking of solid food particles is another common swallowing complaint which may be related to dryness. Having difficulty articulating and voicing complaints of hoarseness and reduced volume also occur. The terms "burning", dry throat, cracked lips or corners of the mouth, thick/scant saliva, "Ropy feeling", and or "ropy" saliva are also frequently used in patient descriptions. The tongue may feel dry and/or may be reported as tough, sore, coated or cracked. A geographic tongue may be present. Mouth sores, mouth pain, bleeding gums, ill-fitting or painful dentures and difficulty in expectorating phlegm, particularly in the morning may be reported. Patients may complain of heartburn and or reflux. Excess throat clearing may also be noted.

 

Speech Pathologists who work with patients who have had or will have radiation treatment to the head and neck must educate themselves regarding the issues of radiation treatment and its effects. The aim of this article was to provide the SLP with some basic knowledge of radiation and hopefully inspire the SLP to ask questions and seek out more knowledge. This topic of radiation and the SLP's role will continue in a future edition. However, should you require any additional information before that time, please do not hesitate to contact me at the email address above.

 

 

 

 


Grow, or You will Shrink…

By Lanny Keithley

 

 

Life can throw many things at you. What was reality yesterday does not exist today. In fact, today may be a completely new reality for you from all of your past. Traumatic events and medical procedures are the most common life changing events, but there are many other things that can change your life forever, on a moment's notice. Since you are reading this article, you have probably been through some of these life changing events and are dealing with their effects.

 

Things that you were capable of being able to do yesterday may now be gone forever. Friends and/or family members may be gone. Some of the things that made up your perception of what you are may have changed. All of these things will happen to you many times during your life. The bottom line is that there is no "status quo" in reality. Reality only exists for a moment and is replaced with the next moment of reality as long as you live. Every moment is different and based on the last moment. The next moment will be based on what is happening right now.

 

Every day when you wake up, it is the beginning of the rest of your life. If viewed, and dealt with as such, it can make your life much more enjoyable for you and all those around you, which brings us to the subject of this article...

 

Whatever you are today is the total of all the "stuff" you have learned and experienced in your life. And, that will be true tomorrow and for every new day you live. You only have one viable option to take in proceeding with your life. That is to seek out knowledge and learn from experience - to grow. Any other path will only lead to a degradation of all that you consider life to be. It may linger for some time, or be quick, but it will happen. There is no such thing as just staying the same.

 

The other side of growing is dealing with "reality" and being able to accept it for what it is - Reality. The dictionary defines reality as - "actual being or existence, as opposed to an imaginary, idealized or false nature". When you are not accepting and/or living your "reality", you can expend vast amounts of energy that, instead of helping your growth, will only accelerate your decline. What you were in the past, whether real or imagined, does not exist now - and there is no way you can make it, or will it, to exist now. You are what you are, right now. Period.

 

I think many folks can agree with most of what I am saying as being true. But, for those who have significant problems dealing with reality, there are areas of their life that they just cannot accept and those areas are the root cause of their problems with it.

 

Billions of dollars are spent each year searching for regained youth and trying to stop the progression of aging. And, most of us will look back on this moment that we hate now, sometime in the future, as being a very good time in our lives.

 

Since the beginning of time, people from most cultures have searched for the "Fountain of Youth" to stop the ravages of age from taking its toll on our bodies. The "to keep us young and to never grow old" sales pitch will be used until the solution is finally found or technologically developed. Until then, not accepting your reality is a much bigger problem. In addition to all the costs and effort involved in this search, the biggest problem with this lack of acceptance with reality is in what it does to your life.

 

While remembering the past is positive and good, using it to define and limit your current life is very unhealthy. The past is the past and as such, is history. No matter how good or bad it was, it will never exist again. You cannot grow and experience new things if you spend all your time thinking of the past. Preoccupation on the past can also build walls inside that can limit your thought processes in the future - keeping you boxed into your non-existent past.

 

On the other hand, it is good to use your past as a basis for growth, as that experience is very valuable in knowing what did or didn't work for you before. If you don't let go of old constraints and walls you built up in the past, you will have to re-experience old efforts to learn their values to you again.

 

It is widely known that many of the diseases and afflictions that are considered to be "old" age related can be limited or stopped by continuing to be active and keep doing things we consider to be "young" oriented. In recent articles, I have been offering techniques to help keep you younger and more active.

 

First, I presented meditation as a tool that will keep your mind and thought processes active. I would recommend that, in addition to the meditation, you pick up habits and games that require mental challenges. Whether that is playing cards, working on puzzles, or any number of activities that require creative thought. This will also help in every daily task you do.

 

Then, last month, I recommended yoga as a way you could keep your physical body in shape and regain many abilities and capabilities you perceive as youthful. Yoga is a great exercise system that everybody can do at their pace and level, and grow with it as their bodies change.

 

Both of these recommendations have worked for me and many others. But, there are many other mental and physical exercise and growth systems out there and most of them will work for you if you just do them. The point here is that you need to keep your mind and body active and going, or it will shrink and you will not like the results.

 

I have been doing the SUDOKU puzzle in the paper every day for a couple of years now. It is challenging to me and I like them. The other day I bought a little electronic SUDOKU game at Wal-Mart . I keep it in my jacket pocket and anytime I have some spare time, I pull out the little game and start playing it. It keeps me active and also really helps to chew up all the time I have to wait for this or that. That little game works for me. Your task is finding something that works for you...

 

Consider new ideas and concepts that will help you to grow and expand. Involve your friends and family if possible to keep up your interaction with others. Every day of your future is what you make of it - Are you Growing or are you Shrinking?

 

 

 

 

 

Out of Joint

by Rosalie Macrae

 

On the day it happened I resolved it would be civilised to keep my wild rage against cyclists to myself. Best to erase it when I could. Definitely best to keep it as the very private black hole which I was hurled into by a boy on a bike, trying to beat the traffic lights and get home to watch the football.

But in the edgy sci-fi glare of this November hospital afternoon, the limbo-land between the last morphine shot and nice visitors arriving with wee bags of loving bits, I decided to write it down.

I would never solve 4Down: "Transplant material sent to hospital dept" 5 letters, and writing something for Whispers on the Web, however downbeat this month, might blur the aftertaste of the indescribable Mousse Heaven, today's pudding. I wonder when exactly the moment of inspiration came to the chef. The Eureka combination of E additives and pink colouring made from crushing hundreds of little beads into red goo, when joyfully pronouncing "this was it" -a new taste deemed a winner! A nudge to the shareholders; a pat on the head from the MD, who said patients would love this. And Rosalie Macrae rejected it so cruelly.

You will have gathered by the reference to morphine that I am somewhat in pain. This is an agonising tangible pain from being knocked over by a gormless cyclist doing a Tour de France sprint on a pedestrian-only place and tossing this female here in a flotsam heap on top of the autumn leaves. I came round with my first-ever terrifying realisation - that I cannot howl - in agony or in ecstasy.

I managed to write in orange dawn lip pencil that I was on Richter Scale 8 of agony. Childbirth plus 2. Broken bones, like wicked raptor teeth, and I wrote to the ambulance paramedic that I was alive, but PLEASE to move gas and air from my nose where it was doing NOTHING, and clamp it over my neck hole - my hole of life.

It had been a surprising quirky urge which made me stick a "Paws for Thought" scribble pad in my pocket instead of the waste bin beside the other appeals. I think it was the particular unattractiveness of the black pawmark heading each magnetized page. I remember thinking that you never knew when you might have paws for thought, reminding myself to send something for one of the gifts itself.

The ambulance man said he was a "silly billy". But how do you convey mild alarm with your Servox, bumping along in an old ambulance which should have been replaced by the city fund years ago. Christmas tree lights were more pressing they said, for the gaiety of the nation.

It is very weird to be here. The orthopaedic ward is next door to Brightlingsea ENT ward. Just a step away from where they binned my voice and saved my life. Here, in West Bergholt Ward, the talk is all of bones and plates and screws. Prosthetic limbs in sensible boots with silver ankle straps lie in heaps. The bone patients looked at me warily, this newcomer to their world. What had my croaky voice to do with them?

I rolled up my pyjamas to show the ankle to thigh cast, already a scribbling block for my grandchildren. The cast was proof of membership. Voice? Least of their worries. It is good to have a change of priorities. When I hobbled a ward length with the frame [walker], they clapped and banged their crutches. It is a place of different anecdotes. Some will never walk again. Others - perhaps myself, may never again savour the independence of driving.

It is a new club. Limbs and limps are de rigueur, not laryngectomees. For the moment my deepest worries are shut off, walled up, secret and silent. I will learn what I can from this new, hopefully temporary, club.

Everything is indeed out of joint.

 

 

 

 

 

Journey Half Way Completed


 

Thank you all for reading the previous issues about my having a stroke. It is important to remember that strokes are the Number 3 killer in America. A frightening statistic.

 

For years we thought only "old" people had strokes, from which they never recovered. We had stereotyped them, they were all folks in nursing homes, unresponsive with no hope.

 

Know the warning signs of stroke:
 
Sudden numbness or weakness of the face, arm or leg, especially on one side of the body.
 
Sudden confusion, trouble speaking or understanding.
 
Sudden trouble seeing in one or both eyes.
 
Sudden trouble walking, dizziness, loss of balance or coordination.
 
Sudden severe headache with no known cause.
 
If you experience some or all of these warning signs, don't wait. Call 9-1-1 right away.
 
The following website has more information: www.StrokeAssociation.org. This is a division of the American Heart Association.
 

Thank goodness that is not reality today. Which is one of the reasons Pat encouraged me to write about my experiences. It is not that I am one of the lucky ones, I am another stroke patient with a long road ahead of me. Being a lary has helped, believe it or not. Learning to accept limitations but working very hard to overcome them is what we had to do when we became larys. We have stories to tell and all of them have value because they educate or touch someone else. If just one person learns from our experiences, what greater purpose could we serve?

 

Although I didn't write about being a lary in the previous articles, it was there all the time. Heaven knows how many medical people I educated, how much strength I drew from knowing that I had survived cancer, gone back to work, and learned to talk. As frightening and difficult as having a stroke was, and is, I was able to use the experiences with catastrophic events from prior times. So I believed I could handle this one, too. I learned about another community that shares a common health situation which usually results in some degree of disability. They face many of the challenges we larys do. And they need caretakers and a support community just as we do.

 

During my therapy, I met fellow patients in their 30's and 40's. I met the wife of a patient who was a top executive with a large local firm. He could walk but could not communicate and had difficulty understanding directions. In another case, just days after a local physician group put out an article about good health, the handsome young man on the cover died from a stroke. He had been a football player and was in top form. So just like cancer, none of us are immune.

 

I learned a lot from this experience. One of the mysteries was what caused my stroke. My cholesterol was perfect, my blood pressure was fine, I may be about 10 pounds overweight but am not obese. I walked at least a mile every day. I had routine blood work one week before the stroke and all tests were within normal range. Yes, there was stress, tremendous stress at work but usually I thrived on it. However it had reached the level where I was considering asking for another assignment. Outside of that, I felt good. So after the stroke, during the days in ICU, almost every test available was done trying to isolate the cause so that perhaps some intervention could be done.

 

It has been decided that since I had head and neck radiation about 15 years ago, the radiation affected some of the vessels. They narrowed over time in response to the radiation. In past years, we weren't suppose to live that long after a diagnosis of head and neck cancer treated with radiation. But we did. Now according to my ENT physician, they are seeing more folks like me. He asked me to participate in yet another study being done by Emory University staff. They are collecting data to validate their assumptions. I will do it but right now I am SO tired of doctors, I need a breather. However, if it may help someone else, I will make the call soon. Now I am not trying to upset anyone especially since what I write about is specific to me. But when there is something that may affect others, I feel the need to share. And that is all it is, sharing information.

 

Now you all know that I can't be serious about all this stuff very long. My weapon is humor. So......

 

Here I am in the rehab hospital where everyone is wonderful and I believe I am making progress. One of the exercises was to drive a motorized cart of the kind that is available in supermarkets. I was really impressed with the facility and how many real life situations they recreated to assist us to return to "real" life. So, one afternoon I find myself in the "Supermarket". There were real but empty cans and containers on several shelves. Four of us were in the market. I had talked and joked with all of them at some point. So the therapist who is one of those people who have all kinds of energy and is always cheerful and never sees anything negative, (the kind of person you love to hate when you are depressed and have no energy) told us we had to come up with a menu and then go shopping. I chose Italian, easy, right? Tomato sauce, pasta, pudding for dessert since they had no fresh things like salad. Well, I have to tell you how much respect I have now for the ladies and gentlemen that use those carts at Kroger and Publix. I set the cart in gear and used the pedal. Result, I shot across the room and missed the shelves. The therapist said, "Oh that is good Vicki, now you have a chance to back up." My fellow patients were starting to giggle.

 

So I changed gears, this time barely touching the pedal but forgot to use the wheel for direction. So this time I back up, slowly, but deliberately into the tables where my fellow patients were sitting. Thank heavens they saw me coming and could move out of the way, except for the one guy in a wheelchair. He had as much difficulty maneuvering as I did. But it was a gentle bump, no harm done.

 

Now my cheery therapist has the nerve to say "Oh Vicki! That was SO good! You missed almost everyone!" I am not kidding! She said this! I think part of therapist training is to learn that song about Never a Discouraging Word was Heard. I love them all but when I screw up it is ok to say so......

 

One more time.....I aim for the shelves so I can go shopping. I touch the pedal softly, I have my hands on the wheel, this should be a snap!

 

I make the turn into the shelving area. I get my pasta, I get my pudding, but the spaghetti sauce is further down. I swear I barely touched the pedal! But I ran straight into the shelving , at full speed. All the groceries went flying. My fellow patients are hollering, "Go Vicki, Go!" as cans are dropping all over.

 

I wanted to cry. I was afraid that since I failed this test I couldn't go home. BUT my cheery therapist said, "Vicki, this is great! This gives you an opportunity to use your left arm and you can put all of the cans back up! Isn't that great, folks?" They were laughing too hard to respond.

 

As I worked at putting up the cans using my left arm, which was significantly impaired, my regular nurse appeared like an angel from heaven. She told the cheery therapist that I had exceeded my three hours of therapy and had to go back to my room.

 

I literally jumped into the wheelchair! When I thanked her for rescuing me, I asked how she knew. She said she heard so much laugher she went to see what was going on and saw me stuck up against the shelf with cans all around me and figured I needed help. We laughed all the way to my room where, once I got into bed, I didn't move until dinner time.

 

Just another day at rehab!

 

 

 

 

 

The Buzzer

 

 

My cute cousin Scott has an autistic son. I am not sure, but I think Ben has Asperger's Syndrome. He is 15 now and has some problems with social skills but is one of the smartest kids I have ever met with an encyclopedic knowledge of all things arcane and scientific. He also has a great sense of humor (albeit a bit off beat) and a truly innocent appreciation for the mysteries of life.

 

He also LOVES my Servox. I am the Super Powered Auntie... I can buzz through steel doors and pulverize enemies. I hold it out and push the button (he especially likes the low loud tones)....he and I have a special understanding. During this past Thanksgiving we played "Jeopardy". I had to ask questions he would deliberately answer wrong so I would push the loud low button as I held it across the table. (I brought ALL my backup batteries with me that day!)

 

Two summers ago I used my Servox to magically break open the door into the garden from another boring family party and he and I have been special friends ever since. He is absolutely fascinated by the device, but since he is a bit skittish about touch, he hasn't been able to figure out how to use it himself.

 

When his grandfather, my uncle, died, I sat with Ben during the service. He wanted to play with my Servox but I explained that it wasn't appropriate just then. He seemed to understand and then disappeared, only to return with a cup of water. He explained to his mother, "I thought she could use this to re-hydrate...it's rather dry in here." He was just 13.

 

After the service, he was relentless in trying to get me to show him how it worked and use it in most unconventional ways. There were some old cousins, who were disconcerted, but Uncle Carlton had a stellar sense of humor and I think somehow he would have approved! Ben and I forged a bond that night. When his grandmother died less than a year later, I remembered his interest and brought extra batteries.

 

He does not remember my original voice and frankly, I doubt I would be of much interest to him if I still used vocal cords. But now.... I am an auntie to be reckoned with!!! He still doesn't like to be touched, but he loves holding the Servox and feeling the vibration.

 

I always have a Christmas Party for all the cousins and I can't wait to show him the TruTone that Tony loaned me...I will have to practice, but that variable tone will drive Ben wild!! I will be the Super Galactic Infinitely Powered Auntie. We will be unstoppable.

 

I learned something from Ben this Thanksgiving. I don't usually like this voice and often times I have bemoaned it...as you frequent readers well know. I have felt sorry for myself thinking that my future grand babies will hear a Servox drone when I read "How the Grinch Stole Christmas", especially since I think that reading aloud to children is one of the principle tenets and joys of parenthood.

 

Maybe I am like that Grinch whose heart was three sizes too small. It is not about the voice.

 

And the Grinch, with his grinch-feet ice-cold in the snow,

Stood puzzling and puzzling: "How could it be so?

It came without ribbons! It came without tags!

"It came without packages, boxes or bags!"

And he puzzled three hours, `till his puzzler was sore.

Then the Grinch thought of something he hadn't before!

"Maybe Christmas," he thought, "doesn't come from a store.

"Maybe Christmas...perhaps...means a little bit more!"

And what happened then...?

Well...in Who-ville they say

That the Grinch's small heart

Grew three sizes that day!

And the minute his heart didn't feel quite so tight,

He whizzed with his load through the bright morning light

And he brought back the toys! And the food for the feast!

And he...

...HE HIMSELF...!

The Grinch carved the roast beast!

 

Thanks, Ben, and Happy Holidays to Everyone in the WebWhispers Family.

 

 

 

 

 

HAPPY HOLIDAYS!

 

 

We all knew the onslaught of marketing Thanksgiving and other holiday would begin before the Halloween treats were sorted. The Christmas decorations went up on the streets, in stores, on houses and buildings a few days before Halloween in Tucson, AZ. Sure enough Christmas Carols were heard on TV commercials the morning of November 1st.

 

I guess we should be used to the selling of "Christmas" all year long by now. "Christmas in July" sales promotions online, in print ads and TV, or just going through the stores reminds me of our 2008 Presidential election campaigns starting in earnest two years earlier than usual. Neither campaign seems to address the origin of the events. Remember when decorating the tree was a Christmas Eve party for family and friends? When did it become so important to be organized months ahead of time? If one eats dessert daily it soon ceases to be a special treat to be anticipated.

 

The day after Thanksgiving is known as Black Friday. It refers to black ink indicating store profits. I've worked in retail sales on that day. Now, there's an endurance test for you. In the past few years the usual hype for the newest Elmo, or electronic gizmo will show up on our Friday evening news reports showing droves of people that were up camped overnight, or in line before dawn to get that prize gift item at a bargain price. In some cases it was never meant to be a gift, but sold closer to Christmas at a premium "scalper" price. If I seem a little cynical, a bit disenchanted, over what these holidays have become instead of what they were meant to celebrate, I am. Allow me to ask a rhetorical question? Who is really the cynic here; the greedy scalper, or the non-participant? They get away with gouging because they can.

 

Since I am committed to writing Practically Speaking for laryngectomees, I want to address the reality of this Holiday Season for those who are homebound for one reason or another. This situation can lead to a feeling of isolation, depression and loneliness. First of all, try to remind yourself that all this warm fuzzy stuff two month's prior to the big day is just marketing hype. It's overkill. Those who remember simpler times, not so long ago, understand the effect commercialism has had. The price of greeting cards and postage today, gifts, and travel have all escalated out of sight. Travel has become an athletic event even if all goes well. During the winter months it's the brave who are willing to risk spending a holiday in the airport on cots with a mass of strangers.

 

Perhaps you live alone and whether you are single by choice, widowed, or an empty nester the silence can become deafening. Some of us are old enough to have lost both parents, a spouse, and perhaps siblings as well. We see examples of loving couples and family get-togethers flashed on our TV screens multiple times each day. Don't let the marketers get to you. Know how to use the mute or off buttons on the remote when you've had enough. Take a walk, call a friend, write some cards and letters, or read a good book. Do whatever will give your mind and emotions a break.

 

Cards, letters, email messages, photos, and gifts from family and friends are a great source of comfort and joy. These exchanges are certainly enhanced if you can manage to stay connected to your support network all through the year. I think there can be something rather hollow about the annual "family newsletter and photo", but sometimes life rushes on and the Holidays can be a wonderful excuse to re-connect.

 

If you are a fairly new laryngectomee, please remember to be gentle with yourself. You are still healing. You may need to ask to have your thyroid function tested if depression is a problem. Ask your doctor to run a TSH blood test. There is much more information on this topic in the WW Archives.

 

Hang a wreath, deck your halls, trim a tree (even a little fake tree), bake some cookies, or what ever is a tradition that you feel up to. Since I am still recovering from a September auto accident, and typing one handed while my left arm continues to heal, I'll be following my own good advice!

 

I wish each of you Peace, Joy, and Love,

Elizabeth Finchem
Tucson, AZ
 

 

 

Welcome To Our New Members:

 

I would like to welcome all new laryngectomees, caregivers, vendors, and professionals to WebWhispers! There is much information to be gained from our website, especially our Library, and from discussions held by our members on the email lists. Needless to say, we also hope you will revisit our newsletters.

 

Pat Sanders, WW President

 
 

We welcome the 38 new members who joined us during November 2007:

 

Linda A. Angelo - (Caregiver)
Dickinson, TX

Sharon Marie Baldwin
Charleston, WV

Lisa Barry - (Caregiver)
Sebastian, FL

     

Walter R. Bauer
Richmond, IL

Gary L. Beatty
Davie, FL

Neil Bookspan
Teaneck, NJ

     

Randy Borne
Belle Chasse, LA

Pascale Bourne, (MA, CCC-SLP)
Fort Lauderdale, FL

Karl Bowles - (Returning Member)
Russell, Ontario, CAN

     

Brooks Bowman - (SLP)
Las Cruces, NM

Steve Brayman
Altamonte Springs, FL

Lynn Carrier - (SLP)
Boca Raton, FL

     

Bonnie Christensen
Gilmore City, IA

John E. Conefrey
Vero Beach, FL

Sharon A. Conefrey - (Caregiver)
Vero Beach, FL

     

Lisa Dernick - (Caregiver)
Houston, TX

Jeffrey Dolan
Mooresville, NC

Jake Foster
Dickinson, TX

     

Deborah Dee Gauthier
Apopka, FL

Connie Gelber - (Medical)
Montreal, Quebec, CAN

William J. Giangrande
Hamden, CT

     

Shirley Hayes - (Caregiver)
Jackson, GA

Gordon Hobbs
Evanston, MO

Kim Holland - (Vendor Member)
Plymouth, MI

     

Anthony F. Kall
Phoenix, AZ

Pam Kelley
Orofino, ID

Patty A. Koltrider
Enola, PA

     

Lisa Lim - (SLP)
Singapore

Sarah Madsen (RN)
Fairbanks, AK

Carrie V. Nickell - (Caregiver)
Evanston, MO

     

Jerry Polen
Dallas, TX

Jim Raymond
Port Orange, FL

John A. Scott
Livingston, TX

     

Jim Spelman
Elgin, Moray, UK

Jim Weissert
Snhomish, WA

Georgina Wharton
Tampa, FL

     

Robert Wilson
Nashua, NH

Charles L. Winn
Southlake, TX

 

 

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
           Managing Editor - Pat Wertz Sanders
           Editor - Donna McGary
 

 

 

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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  © 2007 WebWhispers
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