February 2011

 


 

 

Name Of Column Author Title Article Type
News Views Pat Sanders Financial Health News & Events
VoicePoints Carla D. Gress,Sc.D, CCC-SLP Preventing Medical Errors Education-Med
Between Friends Donna McGary Looking Ahead Commentary
My Neck Of The Woods Andy Wade The New Normal Experience
The Speechless Poet Len A. Hynds The Human Spirit Prose & Poetry
P.S. Tammy Wigginton M.S., CCC/SLP Impeccable Taste Experience
WotW Mailbox Len A. Hynds Fear Of Telephone Experience
New Members Listing Welcome News & Events

 

 

 

 

Financial Health

 

I just read a story in the daily paper that made me sit up and take notice. A lady, now 85, who had been paying on her house for 30 years, was taken to the hospital, in 2006. During her stay there, she missed the final payment on her mortgage, of $432.

They foreclosed in 2007 and quoted the amount it would take to settle, outlining $5,797 in fees. The court has now decided that the fees were excessive... but think what it cost her and what great stress this was for her. She was able to sell the house in 2008 for $112,000 and she now lives in a retirement home but it took several more years before it got settled.

Could this happen to us in one way or another? Many times, we have been reminded that we need to take care of what happens to any property and money we might have left so when we are gone "permanently", everything goes according to our prior plans. I started some time ago having bills paid directly out of my checking account. I get the bills for electric, water, cable, telephone, ISP...everything that would be dreadful to have cut off, should I be out of pocket. It meant, in my case, that I had to keep more money in a checking account. Mine does not paying interest for the use of my money. But, it is convenient and what they pay in interest for CDs or Money Market doesn't make it worth worrying about.

I just saw in the news the other day that many banks are going to start charging us a fee for keeping our money in checking accounts. That may be the last straw that makes it worthwhile to stay where I am. I can find another way to do it myself.... even though I have to contact those people who collect their money and change all the addresses to whatever I do next.

Most of us have wills and insurance and hopefully have already decided what happens after death. I hope so. If not, I hope you take care of that before there is nothing left to leave behind!

And while you are doing that, watch your back for your bank and your mortgage company.

 
Enjoy,
Pat W Sanders
WebWhispers President
 

 

 

VoicePoints written by professionals 

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

 

                                         meaghan.benjamin@mac.com  

                 

 


Preventing Medical Errors

 

A quick scan of the WebWhispers mail-list archive and informal survey of the local support group members reveals a serious, but all too common problem experienced by many of our laryngectomized patients. In their healthcare encounters, laryngectomees may interface with a variety of medical professionals, including EMTs, nurses, technologists, primary care practitioners, physician specialists, and (I am very sad to report) speech pathologists, many of whom do not understand the surgical alterations of anatomy and the implications of those changes with regards to breathing, eating, and speaking.

While the urgent need to train first responders in the correct method of laryngectomee resuscitation is frequently acknowledged, there are many other types of medical encounters that also represent a risk to the health and well-being of our laryngectomee patients. In addition to the reports of oxygen being delivered to the mouth and/or nose despite alerts of “Total Neck Breather”, we also hear of arguments with anesthesiologists concerning the method of intubation and oxygenation, concerns for aspiration in laryngectomized patients without tracheoesophageal puncture or fistula, radiologic reports recommending urgent evaluation for removal of a foreign body lodged in the trachea (which turn out to be a correctly-seated TE prosthesis or dilator), and cancellation of pulmonary function testing, to name a few.


Two recent case studies further illustrate some of the problems:


1) The first pt was an elderly gentleman with mild cognitive dysfunction who had been caring for his 90+ yr old bedridden mother. He underwent total laryngectomy and primary TE puncture and was then admitted to a skilled nursing facility while receiving post-operative radiation. He had been instructed in the use of foam stoma covers to assist in pulmonary hygiene prior to discharge from the acute hospital, and provided with several samples. He requested additional foam stoma covers from the staff at the skilled nursing facility. The pt returned to the hospital ENT clinic for follow-up midway through radiation treatment. During the visit, the SLP noted that the pt was continuously lifting the foam stoma cover, complaining of difficulty breathing through it. A closer look revealed that the “foam stoma cover” which the skilled nursing facility had given the pt was actually a Duoderm patch (non-breathable dressing used to promote wound healing).


2) The second pt was a middle-aged gentleman who underwent total laryngectomy and primary puncture after failed radiation therapy. Post-operatively, the pt rapidly became independent in stoma care and developed functional TE speech. Four months post-operatively, the pt was involved in a motor vehicle accident and was hospitalized due to multiple orthopedic injuries and pulmonary embolus. During his third week of hospitalization, ENT was contacted to “replace voice prosthesis, removed in ER”.


In the first case, skilled nursing facility personnel failed to understand that the laryngectomee’s tracheostoma is used for oxygen exchange. This lack of understanding resulted in temporary respiratory discomfort, but could have led to more serious consequences, including permanent brain damage and eventual death, had the problem not been recognized.

In the second example, the removal of the voice prosthesis initially resulted in temporary aspiration, followed by loss of voice when the TE puncture closed. Surgical re-puncture will be necessary to restore TE voicing at a later date.


As speech pathologists, we must advocate for our laryngectomee patients and assist them as they navigate the healthcare system. Over the years, many avenues have been explored to increase medical professionals’ understanding of the unique needs of laryngectomees. We can:
1. Encourage the laryngectomee and family to be vigilant during medical encounters in order to prevent mishaps. This requires the SLP to actively engage in rigorous patient and family education regarding the altered anatomy and physiology, beginning with pre-operative counseling.
2. Use various alerting systems – for example, MedicAlert bracelets or other portable devices carrying a summary of pertinent medical information, “orange pocket emergency Neck Breather cards” available from:

www.IALHQ@TheIAL.com, tattoos, and signage at the bedside.
3. Utilize educational media and other publications, including booklets and the “Check the Neck” video (currently unavailable from the IAL)
4. Arrange for laryngectomee volunteers to lecture to medical professional groups, including local emergency room personnel, Basic Life Support classes and Emergency Medical Technician training, etc
5. Provide inservice training to your medical colleagues, particularly to the non-ENT departments such as Medicine, Anesthesiology, and Cardiology
6. Read the information in the Safety Section of the WebWhispers library at:

http://www.webwhispers.org/library/Safety.asp
7. Review the method of Hands-Only CPR, particularly with your patients and their families. A good source of information is at http://handsonlycpr.org/#

One new approach that we will be taking in our never-ending struggle to prevent medical errors involves investigating the use of our facility’s electronic medical record system to post alerts. The University of Virginia has recently begun using the EPIC EMR system for outpatients, and soon will begin using this system as the inpatient chart. We would like to enable a pop-up window that would notify any personnel who access the chart of a laryngectomee that they are a “total neck breather”, and that oxygen must always be delivered directly to the stoma, as well as a link to basic information about the tracheoesophageal prosthesis (when appropriate to the patient) to develop understanding of our laryngectomees unique requirements with every medical encounter.


If you have other suggestions or have implemented other strategies to protect our patients, I would be happy to hear of them. Please feel free to contact me at CarlaGress@virginia.edu

Carla Gress, Sc.D, CCC-SLP
 

 

 

 

 

Looking Ahead


Roger Ebert and I don’t seem to have much in common. He is a famous movie reviewer- the two thumbs up of Siskel and Ebert guy. I prefer books and CSI or Criminal Minds. Movies just don’t grab me, but CBS Sunday Morning’s recent interview with him stopped me in my tracks. He had the same cancer as I and with devastatingly different results. I lost my voice. He lost his whole lower jaw. After multiple surgeries to mitigate the damage, with limited success, he said, “No more”. He now has a jaw prosthesis and uses his laptop to convert type to voice. Most of us are familiar with the technology and indeed it has been an interesting thread on the WW List recently as to which phones offer the best apps since it certainly has implications for the lary community.


But that was not what intrigued me the most about the interview. It was the fact that since he was such a well known TV star, there are literally thousands of words in his own voice on record, which can be utilized to re-create his natural voice for a personalized conversion program. Now that is seriously cool. There are problems with the technology, to be sure. As Roger himself noted, the program can’t tell a joke - timing just can’t be programmed. But, on the plus side, he was able, using the new technology, to tell his wife, “I love you” in his own “voice”. That’s powerful stuff.


Unfortunately most of us don’t have a vast archive of recordings of our “original” voice from which to mine words and phrases. But the technology is advancing so quickly, it will be interesting to see what they come up with next. I know that Servox is working on programmable chips for their electrolarynx that can be adjusted for pitch and resonance to more accurately reflect the modulations of human speech. Eventually this voice chip will allow a user to personalize his or her own Servox . I suspect other companies are pursuing similar options.


I wish I had had the foresight to record my own voice, but at the time I was going through treatment and kept losing my voice only to have it restored, I always assumed that eventually we would succeed. I was not yet 50, my son wasn’t married and reading to grandchildren was the furthest thing from my mind. Seven years later, all that has changed and I wish I had recorded some favorite stories and songs; maybe some phrases and thoughts in my own words and in my own voice. Listening to them now would be like looking at a photo album. Instead of wistfully realizing how thin I was then and how awful that hairstyle really was, I would hear how out of key I really sang and laugh at the sound of my own laugh. It would be wonderful.


It occurs to me that folks who have enough time before their scheduled laryngectomy might want to make an audio album. And not just for sentimental reasons; it could be very helpful during recovery, until a new voice is available and mastered or for back-up when one’s new voice is not adequate.


There are some fascinating developments on the horizon. I bet I am not the only one who got calls from friends and family when the story aired about the larynx transplant. As Carla Gress pointed out in her post to the list, there are a number of reasons why transplant is probably not going to be a viable option for any of us. However, in the future, it may be another tool in the arsenal for throat cancer patients and it is bound to lead to a better understanding of that complex piece of anatomy. Perhaps it will yield some new reconstructive technique. Who knows?


What I think is most exciting is how we in the WebWhispers community are always on the lookout for new ideas, options and opportunities to improve our lives. As we share what we learn from phone apps to emergency information, from new products and services to recipes adjusted to our needs, we prove time and time again what a resilient, innovative and optimistic bunch we really are.

 

 

 

 


 

The New Normal

 

Scope

 

The purpose of this paper is to identify and define the many anatomical, physical, behavioral and psychological changes that have occurred within me after surgery and the subsequent treatments for cancer.

 

Definitions

 

For the purposes of this paper:

  • Stoma: The new hole in my neck where my “Adams Apple” used to be.
  • Voice prosthesis or TEP: The "bone in my throat": Tracheoesophageal puncture (TEP): A surgical procedure in which an opening is created between the trachea and the esophagus just behind the stoma. A voice prosthesis is inserted within the tract to allow a Laryngectomee to communicate using lung powered esophageal speech.
  • HME: Heat Moisture Exchange cassette filter
  • Electrolarynx: Hand held battery operated device that produces low frequency vibrations that when held to my neck allows you to hear words.

Introduction

 

In 2007, I had a vocal cord repaired. At this time there were no signs of cancer. The next year on a follow-up visit and subsequent biopsy, I was diagnosed with invasive carcinoma - T2 Laryngeal cancer and scheduled for six weeks of radiation therapy. After radiation therapy was completed, I was told the tumor was 80-90% gone and it appeared that the radiation therapy had cleared the cancer. In February 2009, I had a follow up scan that showed a possible recurrent tumor. On April 8, I was hospitalized for a laryngectomy, thyroidectomy & right lymph node removal. At the same time a PEG tube was inserted in my stomach for feeding purposes. Starting in May, I had another 10 radiation treatments. Now I speak with a voice prosthesis and an electro-larynx.

The treatments and surgery to remove the cancer in my throat has caused me to undergo many physical and psychological changes. In addition, there have been modifications I’ve had to make to my daily activities and routine.

I’ve attempted to document my observations regarding these changes and divide them into categories so that I might be able to summarize, draw some conclusions and reach some general personal recommendations to an approach for dealing with the many changes I’ve experienced. I’m trying to establish a “New Normal”

Obviously all cancers are different. All surgeries are different and there are different procedures and treatments utilized per case. Our bodies are all different and we all react to the surgical intervention and the treatments differently.

I’ve intentionally not addressed well documented issues concerning laryngectomees such as stoma care and prosthesis maintenance.

The purpose of this paper is therapeutic. Identifying these changes will help me accept and adjust to them and is presented here in hopes that others may benefit as well.

 

OBSERVATIONS

 

Anatomical Changes

 

  • I rarely sneeze and when I do it comes out of my stoma.
  • Yawning doesn't seem to serve any purpose. It's just a reflex that causes me to open my mouth.
  • No air passes through my nose so I don't smell things the with the same ease or intensity.
  • In the beginning every time I turned my head or moved my neck, it felt as if I had a bone stuck in my throat, where the prosthesis resides.
  • Having a runny nose and not being able to blow it. I've had to learn to live with it. When it starts, I get ready with the tissue because it's like a faucet. I take antihistamines for it because sometimes it drains down to the TEP and stops things up.
  • If something gets stuck in my throat and I try to wash it down with water, the water sometimes has no place to go and comes out of my nose.
  • Acid reflux is a real problem in my case. If I'm not careful, it will end up in my nose. I watch what I eat, the time of day I eat it and I keep the head of my bed elevated. I have to take the Purple pills. They work great for me!
  • The muscles in my neck, even the ones not directly involved in the surgery, were very sore as they were re-tensioned or relaxing to new positions. Stuff had been removed from the cross section of my neck and the remaining components were, and still are, readjusting to new positions to compensate for the voided area.
  • Stiffness and posture. I stretch and massage my neck often to help get the parts loosened to their new positions. I have to stay conscious of my neck posture.
  • My neck muscles, tendons and such still get stiff and sore. I'm still stretching (up, down and sideways) and massaging every day.
  • The soreness from my neck has gone to my shoulders so I exercise by holding my arms out to the sides and rotate them.
  • I have to be more aware when shaving due to the numbness under my chin.
  • I’ve developed a constant ringing in my ears.
  • My teeth are more sensitive and some will have to be repaired.
  • My teeth and jaw don’t line up as they did pre-surgery.

 

Changes to Physical Capabilities

 

  • I breathe through my neck so I can't pull the covers up around my neck and I have had to adjust my sleeping position to be able to breathe easily.
  • I can't hold my breath to force a bowel movement. I've needed to learn to use my abdomen muscles more.
  • Not being able to smell affects my ability to taste thus my choice in food has totally changed.
  • Bathing in the beginning was by sponge in a chair. It was a scary experience at first for fear of getting water in my lungs. I bathe now just as I did before. The attachment for my base plate over my stoma keeps the water out and works great. It took time for me to get over the drowning thing and build my confidence.
  • I became reliant on my feeding tube and although it was uncomfortable and made sleeping difficult, I feared getting it removed. I was afraid of learning to swallow again.
  • Swallowing was very difficult in the beginning. In part due to swelling, in part to food hanging up on the TEP or the TEP leaking. When the TEP leaks and fluid goes into my lungs it causes me to cough it out.
  • Another problem I had with swallowing was learning to use different muscles to get the food to go down.
  • Learning to chew again was a bit of an issue because either due to the radiation treatments or the removal of parts in my neck, my teeth didn't line-up as they once did.
  • Nervous coughing was something I experienced before the surgery but even more so after. All I had to do was think about the TEP in my neck and I would start coughing and gagging. Gagging really doesn't accomplish anything other than making my neck more tense and constricted.
  • Learning to keep my neck relaxed has been the key to learning to swallow and also learning to voice with the TEP. In the beginning, the more I forced to make a sound the harder it got.
  • Vomiting is a real hassle and it almost scared me to the ER. (I should point out that I live by myself, 30 mile from town.) My instincts were telling me I was going to suffocate when in fact my breathing was in no way affected. Again, the mind has to re-adjust and learn to relax. Nothing bad is going to happen other than the mess- hopefully in the waste can.
  • I can't hold my breath when lifting, pushing or pulling. I needed to re-learn these capabilities.
  • I can’t bend over too soon after eating, the food will come up.

 

Behavior Modifications

 

  • Daily stoma care and daily HME and prosthesis maintenance required longer “get ready time”.
  • I have to maintain a suitable environment for my lungs and stoma: humidifier, air purifier.
  • Provide proper filtration and cover for my stoma depending on my activity.
  • Keep hand cleaner in the car and around the house and use frequently.
  • I've changed my eating routine to grazing all day long. Like stuffing a sausage, I try to keep product moving through. This keeps me regular. Regularity was a major problem early on.
  • I needed to install and maintain more smoke alarms because I can't smell the smoke.
  • When I'm cooking something, I always leave the vent canopy light on over the stove.
  • I can't smell if food has gone bad so I am more conscience of expiration dates.
  • My old deodorant was discontinued and picking a new one was a challenge. I had to try and fan the scent towards my nose. I’ve changed how I shop.
  • The whole eating thing was, and still is, a totally new learning experience. I had to learn what will go down and what gets stuck. What size pill I could swallow and which ones will get stuck. What to do when something gets stuck? I try to clean the TEP with the TEP brush and then I flush it. I try to keep my throat lubricated before taking pills or I take the pill with apple sauce or jelly.
  • I had to find a dentist that is familiar with working on patients with stomas.
  • Eating in public requires confidence that is only obtained by trial and error at home.
    • I only order food I know I can swallow.
    • I order a small portion when eating with others so I finish at the same time (for me, that's a small salad with ranch dressing).
    • Don't talk with your mouth full! It is very difficult to talk with the TEP while eating. I don't try. I wait till I've finished swallowing and sipped some water.
  • As mentioned above, my diet has changed, as has my sense of taste and smell. My diet is constantly changing and expanding. Much of what I used to like I don't anymore and things I used to not eat very often I'm eating more of now. I don't really remember what things tasted like any more. I have to admit that I've wasted quite a bit of food trying to find things that taste good to me and aren't an acid reflux problem. Diet is very important to me now, for nutrition and to stay regular. Many of the changes I'm making probably should have been made anyway. I always have the "Boost" to fall back on.
  • As stated before, maintaining good neck posture is important, especially if spending time at a computer.
  • When traveling in the car I carry a travel box that has saline bullets, extra HME filters, base plates and a TEP brush. I also carry a small bottle of water, a box of Puffs tissues (they have less lose fiber) and a wash cloth. The wash cloth comes in handy if I'm driving and have a coughing spell.
  • I always carry a handkerchief in my pocket.
  • For fall back communication, I keep my electrolarynx in plain view so if I get stopped the cop will see what I am reaching for.
  • I dress differently so that I can access my stoma easily in case I have a coughing spell.

Drug and Body Chemistry Induced Sense of Wellness


After the removal of my thyroid, I experienced some of the symptoms of Hypothyroidism;

  • Fatigue.
  • Weakness.
  • Coarse dry hair.
  • Some hair loss.
  • Cold intolerance.
  • Muscle cramps and frequent muscle aches.
  • Some constipation.
  • Depression and irritability.

These symptoms could all be contributed to the changes of my thyroid function.


I was also diagnosed with Gout and elevated uric acid levels. Other than a genetic predisposition, Gout attacks might be triggered by recent surgery. They are probably related to changes in the body-fluid balance as patients temporarily discontinue normal oral fluid intake in preparation for and after their operation. It has been reported that the taking of diuretics can also contribute to the onset of Gout attacks.

 

The Gout has caused me to have

 

  • Pain, swelling, and extreme tenderness in my joints. The pain is worst during the night.
  • I have limited movement in my joints due to the pain and swelling.

Interestingly, a recent study reported an increase of abnormally low thyroid hormone levels (hypothyroidism) in patients with gout. So these two chemical imbalances may be interrelated.

Add to this chemical mix the high doses and side effects of the steroids (40 mg/day Dexamethasone) I was taking during the radiation therapy. This caused:

  • Irritability
  • Insomnia
  • Fluid retention
  • Muscle weakness
  • Mood Swings

Plus the side effects of the radiation therapy itself:

  • Changes in appetite
  • Hair loss
  • Localized skin irritation
  • Fatigue
  • Blood chemistry changes
  • Dental damage


Some or all the above side effects have the potential for masking or obscuring the physical sensations of the healing process. These body chemistry changes are a substantial deviation from the pre-surgery normal. It’s important to realize that all of these side effects will not end at the same time. Some may be long term and as some side effects recede others may become more apparent. Furthermore, my medications are just now becoming consistent in their use and dosages, therefore the body chemistry is just now beginning to stabilize to its “New Normal”.


Psychological Change and Adaptation

 

  • What do I look like to others?
  • How do I sound to others?
  • When and how do I speak?
  • The casual conversation is not so casual anymore.
  • I can’t speak over others.
  • I can’t be heard in a noisy environment or even with the TV on.
  • “Sorry I can’t go to your New Years party this year” - I don’t go out socially anymore.
  • I have to excuse myself to cough or to go clean my stoma area.
  • I can’t laugh out loud unless I plan ahead.
  • I’m not sure what I’m going to feel like one day/one hour to the next.
  • Depression sets in easily if I let it.
  • Will I ever be able to enjoy eating and the company of others as I did in the past?
  • How will I be able to get physically close to some one again?
  • Will the cancer come back?
  • What will I do if it does?
  • Will I accept treatment again?


Although these may be legitimate questions, the way I address them can largely be affected by the side effects of medication and the changes in body chemistry. I must accept the responsibility of my own thoughts and realize that my perception of my condition is being seen through the “lens” of chemically altered thought. I use the analogy of the drunk that thinks he can drive. If he were to see himself from an omniscient point of view, he would certainly realize that he was not thinking clearly. When I feel the onset of the depressed mood, I can consciously stop the thought by telling myself, “don’t go there!”


There are no specific answers to these types of questions. How I will act and adjust to my condition will evolve through doing what I know I must do to maintain my health. There is no advantage in trying to understand what others think of how I’m am dealing with my situation. The best I can hope is that I’m being seen as handling my situation with as positive attitude as possible. Having said this, it’s not how I’m perceived that is important; it’s to my benefit to know that I’m projecting as positive an image as possible.


Summary


Anatomical Changes

 

I need to recognize and admit to myself that I have had major modifications to my body and it will take a more than what I think is reasonable time to adjust. The muscles and tendons have to adjust and stretch to new positions. Nerve endings have to re-establish themselves. My lungs have to adjust to a new breathing pressure. The stoma opening must develop a thicker skin lining. The skin tissue in my wind pipe must adapt to the presence of the prosthesis. My body is changing. Maybe not as fast as I would like so I have to learn to be sensitive to it and work with it through exercise and massage.

There is no need to share or expect understanding of these things from non-larys. Even though they may try to identify with my situation, they have no point of reference.

 

Changes to Physical Capabilities

 

  • In summary, regarding the physical, it seems the main things I've observed require relaxing and the building of confidence. How do these things go together? If I think of the shower learning curve, once I had the confidence wasn’t going to drown, I could relax and actually enjoy the shower. The way I built my confidence to take a normal shower was to take chances and push beyond my self- imposed limits.
  • I won't ever be able to yell unless I have a microphone. This has made me think of recording my voice and perfecting my voice like a singer does. This is something I might pursue.
  • About the electrolarynx; personally I like using it too much. It takes less effort to voice and I enjoyed learning to use the Darth Vader, Peter Frampton sounding thing. I come from a musical family and approached learning the electrolarynx like learning to play a wind instruments. Wind instruments require a certain touch, just like the sweet spot I found on my neck. You can't force a clarinet or trumpet without sounding like a wounded duck. I actually enjoy using it and don't have any problem being understood even on the phone.
  • Some things I used to do I will never do again, but this is true of many things that come with growing older. Realize that some of these capabilities just came to an abrupt end and find and learn other things to do. Look forward to learning new things.

Behavior Modifications

 

  • I need to pay attention to dental and physical hygiene specifically in and around my stoma. I need to seek diet improvement and concentrate on nourishment. All the changes in daily behavior and activities associated with the care and maintenance of the new hole in my body are and will become learned behavior with practice. It’s important that I practice correctly. For the immediate future this is part of my job/duty/chores. It will become second nature with time.
  • Drug and Body Chemistry Induced Sense of Wellness
  • The overriding effect of drug and body chemistry induced thought and symptoms are considerable and should be recognized as a potential source of many of my concerns. Physical perceived symptoms should not be ignored and when persistent should be discussed with my doctor although I can’t be on the phone every time I feel a little off. The underlying problem may very well be a chemistry issue that will adjust with time. The same applies to mood changes.

Psychological Change and Adaptation

 

  • This is probably the hardest topic to address with any specificity. The only point of reference that comes to mind is puberty; when the physical and chemical body is changing at the same time. The totality of the change is a hard thing to get the mind around. The physical changes with the chemically induced emotional changes along with the uncertainty of the recurrence of the cancer, social isolation and financial uncertainty all leave me psychologically adrift if I let them.
  • As with the physical adjustments requiring the need to relax, the psychological changes need to be addressed in the same manner. I need to do what I know needs to be done and let the rest follow. Remember that my mood may be chemically influenced and I should be wary of being too judgmental of my situation.

Recommendations

 

  • Develop my self confidence by pushing my limits in daily activity.
  • Make my “to do” lists doable so that I have cause to feel satisfaction with my accomplishments and not beat myself up over what did not get done.
  • I need to increase my self- awareness and recognize that some of my thoughts and some of my symptoms are the result of changes in body chemistry.
  • Relax and learn to be patient with my body and embrace the changes.
  • It’s imperative that I look at dietary changes and programs to promote my health.
    Dental hygiene must be increased due to radiation damage to my teeth.
  • Relax. A “New Normal” in the matter of all things will evolve in time.

Conclusions

 

  • I have another hole in my body that needs to be maintained. Many of the issues listed here have and are changing with time. A normal body is constantly changing as it ages. My body has had some abrupt changes made to it and the normal physical adaptation to these changes will occur with time. The human body is amazing in its ability to adapt and compensate for changes. I must be patient with these changes and work with my body to assist it as it changes.
  • Adapting to many of these changes involves building confidence. Confidence will be coming with time and is obtained by pushing myself to expand my comfort zone. The perception of the quality of my life must change. This involves conscious decisions pertaining to my priorities and definition of sufficiency.
  • I need to remember back to the first days home after the surgery. Some days there was only a small window of 30 minutes or an hour that I actually felt that I would ever feel normal again. It was just a small glimmer of well being. As time has passed that glimmer has now grown to light the better part of my day.
  • With time my body will arrive at its “New Normal”. It’s up to me how the trip goes.

Andy Wade (Laryngectomee 4/09)
 

 

 

 


 

The Human Spirit



I belong to three cancer care clubs by invitation, of people who have recovered from cancer in all parts of the body. The Ashford Laryngectomee Club, the Let's Face It Group, who have facial disfigurements, and the Canterbury Cancer Care Club which covers all cancers, and I write for all three of them. I also write for two medical supply companies and three charities in the UK, so I meet an awful lot of people who have survived cancer, and a few who have just been diagnosed or it has re-occurred. I realize now that we laryngectomees are so lucky when only the larynx is involved. For it to have spread just a matter of inches, say to the tongue ,would have made life impossible for us, as without that masterpiece no sound at all could be made.

So during the holidays, Tilly and I attend many Christmas dinners, We had at least six this past year; all great fun, with good company.

 

One in particular stands out. It was in a hotel restaurant and sitting opposite us were a father and daughter. I could see that the young lady was pregnant and whilst everybody was engaged in chatting, the father whispered to me that his cancer had returned and he had been told it was terminal. As I looked at them both, I thought, " They are both pregnant. One has a new life growing inside, that will give such joy in the months and years to come, and the other has this malignant growth growing inside, that when it reaches a certain size, will give birth to a death."

I detected that the daughter already knew of this and I marvelled at the pair of them. The sheer resilience of the human spirit, by the quiet acceptance by the father, and when my eyes met those of the daughter, she seemed to know that I had been told, and I guessed that she was refusing to accept the inevitable. No one else at our table realised their sad secret, as they had no wish to spoil the festivities and the laughter that was all around us. I thought of a poem I wrote during the summer, and although meant for laryngectomees, the first two stanzas were ideal for them. I called it...

 

The Pretence


The mask we wear, that smiles and lies,
so hides the tears, that’s now in our eyes.
We practice hard, with inner guile,
with torn and bleeding heart we smile.

Why should we show them otherwise?
Why should we let them hear our sighs?
Let them not think, or dare to ask,
that this our smile is just a mask.

The voice is gone, but we are here,
and gone is that once dreadful fear.
The mask will vanish, just like a pain,
and then once more, we'll smile again.

 

I rarely write of actual cancers, but of the effect they have on people. In the silent , brave, smiling acceptance by the sufferer, the desperate prayers by their loved ones, and the sometimes embarrassed speech and looks of colleagues, who treat you as if you had already left. I just try to shine a light on people’s feelings, and in doing so realise what a wonderful thing the human spirit is.

 

 

 

 

 

Impeccable Taste

 

Several months ago, I happened to see an episode of Oprah which featured Chef Grant Achatz who has been described as a “genius, a magician and the Beethoven of the culinary world”. The topic of the show was “Shocking Medical Mistakes”.

Chef Achatz, owner of Alinea, a very hip restaurant in the Lincoln Park neighborhood of Chicago, was diagnosed with a stage 4 tongue cancer in the spring of 2007. He reported he had actually been experiencing symptoms since 2002. Initially Chef Achatz reported seeing a small dot on his tongue which was painful when he put hot or sour foods into his mouth. He was seen by several dentists and doctors and even had a few biopsies, before eventually being diagnosed with a Stage 4 tongue cancer, 4 years after the onset of initial symptoms.

By the time he was diagnosed, he could no longer speak clearly and was basically living on soup. He saw several reputable head and neck surgeons and was presented with a variety of treatment options including a partial glossectomy (removal of the majority of his tongue), neck dissection, and chemoradiation therapy. After considering his options, he decided to undergo the neck dissection and chemoradiation therapy. As a chief, he could not imagine losing his tongue and sense of taste.

In an article in the New Yorker, Chef Achatz reported his doctors warned him radiation might affect his sense of taste. A few weeks into his radiation treatment, Achatz reported he was unable to taste anything. As a chief, he compared losing his sense of taste as “like being blind”. The genius chief, who had been awarded with Gourmet Magazines highest honor; “Best Restaurant of the Year” was reduced to living on apple juice and liquid supplements. Throughout his treatment, he prepared delicious meals and created brilliant menus for his restaurant patrons with only his memories of taste and his sense of smell.

Chef Achatz reported by the end of 2007, he was able to taste sweet flavors again. In the weeks that followed, he survived on milk shakes and ice cream. He continued to challenge himself by tasting foods and reintroduced a larger variety of foods into his diet as his sense of taste improved. Over time, Chef Achatz reported his ability to taste has slowly returned and he now understands the sense of taste in a new way. He described it as “initially only being able see in black and white and then one by one colors were restored to him.”    

 

Achatz hopes ultimately, that the months he spent without his sense of taste will make him a more creative chef. He reported he has some doubts about whether his sense of taste is what it once was, but I suspect he is doing pretty well. His restaurant continues to be a hit with food critics and restaurant patrons alike and on November 15th 2010, The Los Angeles Times reported he is opening a new Cocktail Lounge; Aviary right next door to his current restaurant.

Submitted by Tammy Wigginton, M.S., CCC/SLP
 

 

 

 

 

Telephone Type


This is neither a story or a poem, but something I learnt today after nearly seven years of being a laryngectomee. From the moment I started talking again all those years ago, I was filled with a determination to succeed with anything I attempted. I went back to college to improve my writing skills, went on to University and graduated. Spoke to great audiences with confidence, when helping with lectures, or at committee meetings, and always wondering what my artificial voice sounded like to them.


I always tried to carry the audience with me, by getting them to laugh frequently. Acting, I suppose, like an after dinner speaker, with a few well chosen laryngectomee jokes, such as, " This valve in my throat is a marvellous thing, and was invented by two doctors with German sounding names, Blom and Singer. It does have its drawbacks however, as I tend to swear in German!”


In spite of all this confidence, like most laryngectomees, I had an Achilles Heel. This was an absolute dread of using the telephone, and I would use any excuse not to speak on it. Today the wife of a laryngectomee friend telephoned and spoke to Tilly, and I was called to the phone to 'Get a message from her". When I picked the phone up, she had done the same at her end, and my friend Steve and I spoke together. This was the very first time that either of us had heard the dulcet tones of another laryngectomee over the telephone and we were both astounded at our clarity.


In one foul swoop, those ladies had cured us of that fear, that is normal in nearly all laryngectomees. So, we should phone each other at frequent intervals as part of our long term rehabilitation.


Len A. Hynds
 

 

 

Welcome To Our New Members:

 

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

 

Thanks and best wishes to all,

 

Michael Csapo

VP Internet Activities

WebWhispers, Inc.

 
 

We welcome the 41 new members who joined us during January 2011:

 

Mike Allgeier
Louisville, KY
Trish Bartell
Papua, New Guinea
Jimmy Bobo
Arab, AL
     
Don Bojanowski
Prudenville, MI
Sue Bojanowski - (Caregiver)
Prudenville, MI
Jim Bowers
Summerfield, NC
     
Richard Bruning
Lake Panasoffkee, FL
Kathleen Campbell - (Caregiver)
Whitby, Ontario, CAN
Guerra Carlos
Lagos De Moreno, Jalisco, Mexico
     
Michael Cleary
Ontario, CA
John Van Cleave
Murphy, TX
Les Conway
Salem, MO
     
Joanne Dawn
Gilmer, TX
Colin Fallow
Whitby, Ontario, CAN
John Flores
Downey, CA
     
Robert Foucart
Liverpool, NY
Aaron Futterman
Buffalo Grove, IL
John Ganley
Stow, MA
     
Jim Harris
Brock, TX
Amy Hostinsky - (Caregiver)
Detroit, MI
Carol Johnson
Richland, WA
     
Jennifer Keller - (Caregiver)
Topeka, KS
Lynne Lane - (SLP)
Stamford, CT
William McAndrew
Vienna, VA
     
Linda McCauley - (SLP)
Parkersburg, WV
Andrew Palmer, MS, CCC - (SLP)
Portland, OR
Darlene Pearson - (Caregiver)
Chicago, IL
     
Leslie Pearson
Chicago, IL
Geri Perreira
Fall River, MA
Heather Pitts - (Caregiver)
Queenland, Australia
     
Ken Poland
Mechanicstown, OH
Sandra Sheffield - (Caregiver)
Lake Wales, FL
Tom Shuman
Chama, NM
     
Brian Stamm
Cashton, WI
Kellis Thompson
Poplar Bluff, MO
Jo Underwood - (Caregiver)
Robertsville, MO
     
Ray Underwood
Robertsville, MO
Madlyn Walton
Irvington, NY
Gary Williams
Flintville, TN
     
Barry Woolf
Decatur, GA
Delma Zepeda
Sicklerville, NJ
 

 

 

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
           Webmaster - Len Librizzi
 

 

 

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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