September 2011

 


 

 

Name Of Column Author Title Article Type
News Views Pat Sanders Old Fashioned Way News & Events
VoicePoints Beth M. Beadle, MD/PhD Evolution Radiation Therapy Education-Med
WebWhispers Columnist Marlene Haynes Return Of Juliette Experience
Between Friends Donna McGary  My Summer Vacation Commentary
Speaking Out Members    Stoma Cover Question Opinion
Nuf-Sed Bob Keiningham Two Greatest Resources Commentary
The Speechless Poet Len Hynds Footfalls Poetry
Editor's Mailbox Mattoon, LaFrance Hello Fellow WebWhispers Experience
New Members Listing Welcome News & Events

 

 

 

 

Old Fashioned Way

 

With our "Speaking Out" topic of stoma covers, I was surprised to see so many writing in who use the Old Fashioned Way. I thought most would be using the HME, since so many are started out with that now. I am a believer in everyone learning other methods of speech, basic ways of cleaning the stoma and using simple methods to clean a TEP and then moving on to new and better products when they are ready.

If I had been able to learn esophageal speech, I would probably have been a big advocate. I did learn to use an electrolarynx and it was my only voice for a year and a half. I am forever grateful that I did. I have had few emergencies when I needed it but have known other larys, having a mild temporary problem or severely ill or dying, when that was the only voice left. It takes almost no strain to use, especially with an oral adaptor. Talking can take a lot of effort when you are not well. Other times, the TEP should have an air flow that is comfortable.

I've stayed with the basic self-changable prosthesis ever since I had my TE Puncture. Some of the new ones have sounded effective but the people who have them inserted are often left with no training for taking care of them and, not being used to handling them, they are at a loss if they can't get to the nearest SLP who knows what to do. This is one reason I so fully support the Voice Institute so larys can learn more than they ever learn in the SLP's office. The time at the VI classroom is spent to teach the whys and wherefores.

The hands free is not a new fangled device but some larys come away with one so early that they never learn what to do if it isn't working. They should learn the basic principle of talking by occluding before adding a handsfree valve. They then understand what the valve does. Some people come to us so poorly educated in stoma and prosthesis care that they think if the handfree is broken, they can't talk.... The handsfree valve "occludes" for you, not "talks" for you.

I will remind everyone that we have a whole section in our library about how you can make your own stoma covers or have them made from the patterns:

http://webwhispers.org/library/StomaCoversandPatterns.asp

While you are there, please check out the other sections on Stoma Care.

 

Enjoy,
Pat W Sanders
WebWhispers President
 

 

 

 


The evolution of radiation therapy for head and neck cancers:

New techniques and attempts to prevent long-term side effects

 
Beth M. Beadle, MD/PhD
The University of Texas MD Anderson Cancer Center
Department of Radiation Oncology

 

Head and neck cancer can be cured with a variety of treatment modalities depending on the location of the tumor, cell type from which it arose, and extent of disease (tumor stage); chemotherapy, surgery, and radiation may be used alone or in combination. In the case of tumor recurrence, these three tools are again assessed for their utility in salvage therapy.

Both radiation therapy and surgery are local therapies; they work where they are aimed. There are not systemic effects of either radiation therapy or surgery, and their possible complications (both short-term and long-term) are limited to the head and neck area. Chemotherapy can be used in two ways; it can be used alone at high doses to treat or prevent distant disease and reduce the size of local and regional disease, or it can be used in low doses at the same time as radiation is given. In the latter use, the goal of chemotherapy is to “radiosensitize” the tumor, or make it more prone to death caused by the radiation therapy.

Radiation therapy has undergone a significant evolution over the past 15 years. Prior to the development of computed tomography (CT) scans in the 1980s, patients were treated based on x-rays. In that case, the tumor was not directly visible on the planning scan. The x-rays were used to identify bony landmarks of the tumor location and radiation was given in large fields from a few angles (Figure 1). The benefit of this treatment was broad coverage; the drawback was that normal tissues received significant doses of radiation. When CT scans became common, radiation therapy was designed based on these 3-dimensional images. There were improvements in targeting the tumor, although fields of radiation were still broad geometric shapes and included a significant amount of normal tissue. Patients treated with both 2-dimensional and 3-dimensional therapy, prior to the late 1990s, developed many of the negative side effects historically associated with radiation therapy. These include severe dry mouth, dental decay, stiffness of the neck (described as “wooden”), and inability to swallow.

In the late 1990s, newer techniques emerged to help design and deliver radiation therapy in a more precise way. These were largely driven by improvements in computer technology and processor speed. The goal of these methods was to dictate the amount of radiation getting to specific areas at risk for the tumor and minimize the dose to normal tissues. Although it was impossible to completely protect adjacent normal tissues, these techniques allow us to determine maximal acceptable doses to these areas, and the algorithms optimize the treatment so that we can get as much dose as possible to the tumor and at-risk areas and the minimal dose to normal tissues. There are many techniques available to this end; these include intensity-modulated radiation therapy (IMRT) (Figure 2), tomotherapy, Cyberknife, and proton therapy. In each of these cases, the goals of the technology are to design and deliver very precise radiation. The goal of the integration of 3-dimensional planning based on CT scans and the ability to deliver more targeted radiation therapy is to minimize normal tissue damage and long-term side effects of treatment.

Historically, conventional radiation therapy has resulted in significant acute side effects in up to 80% of patients, intensified by the use of chemotherapy (1). Long-term toxicities are expected in 30-40% of patients, and these include significant dry mouth, dental decay, osteoradionecrosis (bone breakdown), and fibrosis (soft tissue, thickening, scarring, and decreased range of motion) (1). As patients can attest, these side effects significantly impact quality of life and the ability to return to normal functions (2, 3). The long-term side effects of radiation on normal tissues are life-long, and decreased quality of life can be noted in studies of cancer survivors even a decade after the completion of treatment.

Given the relatively new development of these highly conformal methods of radiation delivery, the long-term impact on normal tissues is still under investigation. However, there are have been promising reports thus far. Small feasibility studies have shown that the use of IMRT and highly conformal radiation therapy have resulted in improved salivary flow rates in patients treated for head and neck cancer and that these changes have resulted in less patient-reported dry mouth (4, 5). Most recently, a European trial directly compared conventional radiation therapy with IMRT designed to spare the parotid glands. The patients treated with IMRT had a significantly lower rate of dry mouth than those treated with conventional radiation (6). Although there is little long-term data on the effects of sparing normal tissues from high doses of radiation using IMRT, the preliminary data suggests that the short-term complications are less. There is significant hope that this will translate into better quality of life in the long-term for survivors of head and neck cancer.

At this time, even more advances are being tested to allow curative therapy for head and neck cancer with minimal toxicity. Proton and carbon therapy are emerging methods of delivering radiation in a geometrically targeted way; these treatments must be delivered in specialized centers due to the complexity of creating the radiation beam. These centers are opening more and more throughout the United States. Again, studies will be needed to understand the impact of treating head and neck cancers with these technologies, and to understand the long-term effects of these treatments.

Head and neck cancer continues to be a challenge to patients and their physicians. However, improvements in technology have greatly reduced the side effects both during treatment and in the long-term. Survivors should participate in rehabilitation programs to maximize their swallowing function and range of motion to try to mitigate the effects of radiation therapy in the future. Overall, head and neck cancer treatments are much better tolerated now than in decades past; however, we still have significant progress to make. The strength, determination, and grace of the head and neck cancer patients require us to mindful of our treatment and challenge us to improve the rates of cure and reduce the rates of complications.


'

Beth M Beadle, MD, PhD
Assistant Professor, Division of Radiation Oncology,
The University of Texas MD Anderson Cancer Center, Houston, TX

 

 

References

1. Forastiere AA, Goepfert H, Maor M, et al. Concurrent chemotherapy and radiotherapy for organ preservation in advanced laryngeal cancer. N Engl J Med 2003;349:2091-2098.
2. Jensen AB, Hansen O, Jorgensen K, et al. Influence of late side-effects upon daily life after radiotherapy for laryngeal and pharyngeal cancer. Acta Oncol 1994;33:487-491.
3. Bjordal K, Kaasa S. Psychological distress in head and neck cancer patients 7-11 years after curative treatment. Br J Cancer 1995;71:592-597.
4. Eisbruch A, Ten Haken RK, Kim HM, et al. Dose, volume, and function relationships in parotid salivary glands following conformal and intensity-modulated irradiation of head and neck cancer. Int J Radiat Oncol Biol Phys 1999;45:577-587.
5. Eisbruch A, Harris J, Garden AS, et al. Multi-institutional trial of accelerated hypofractionated intensity-modulated radiation therapy for early-stage oropharyngeal cancer (RTOG 00-22). Int J Radiat Oncol Biol Phys;76:1333-1338.
6. Nutting CM, Morden JP, Harrington KJ, et al. Parotid-sparing intensity modulated versus conventional radiotherapy in head and neck cancer (PARSPORT): a phase 3 multicentre randomised controlled trial. Lancet Oncol;12:127-136.

 

 


Figure 1: Conventional radiation for head and neck cancer. A lateral x-ray with a basic treatment field delineated demonstrates conventional radiation techniques; large fields from a few angles designed to cover the tumor and at risk areas, while sparing little normal tissue.

 

 


Figure 2: IMRT for head and neck cancer. The treatment is based on a CT scan with targets (indicated in the shaded colors) outlined and the dose delivered (indicated by the solid lines) shaping around critical structures. This technique attempts to maximize the dose at the tumor and minimize the dose to normal tissues.
 

 

 

 

 

RETURN OF JULIETTE

by Marlene Haynes


The Day of the Tornado

 

For full story of this day, please check Marlene's article, TORNADO! from our July issue:

http://webwhispers.org/news/Jul2011.asp

On May 22nd 2011 I had a very energetic day, spent the entire day cleaning out my walk-in closet, getting rid of big clothes, washing and drying the clothes I was keeping. I finally got the last load in the washer, I had 7 bags of clothes to divide between my neighbor and my girl friend, piled up in the living room floor, I worked hard that day. About 5:30, my neighbor came running through the back door yelling get in the bathtub a tornado is coming, quick!

I ran to get my two Persian cats, grabbed up Baby Furball and took her in the bathroom went back to get Juliette and she was nowhere to be seen, called for her but it was too late to look any more. The winds were already hitting the house so I dove into the tub with Baby Furball under me, I was on my knees bent over her, praying with all my might that Juliette was under something or not scared as I heard the house get pelted with debris.

After the tornado ripped through it seemed like forever when I got out of the tub and slowly stepped into the hallway and the kitchen, dining room and living room were not accessible. I listened and listened and it was dead silent, no meows or cries, I knew Juliette had perished in that mess or got sucked out and was gone.

I doted on Baby Furball trying to keep her dry and warm, I covered her up in coats anything I could find to protect her from the pouring rain and hail.
When we got to my friends in Webb City, we got Baby Furball settled in a little room with food and a potty box, then it started, I cried and cried all night thinking about Juliette, I missed her so bad. Every day I cried and prayed that she went quick and didn't suffer, it tore my heart out to think she was cold, wet, and suffering somewhere. I told God, "you know how sweet and loving she is Lord, please take care of her and let her know I love her and I'll never forget her." Then the anger fell in on me, How could this happen that she was torn from me like that when God knows how much we loved each other?...I went on like that for days, mourning my beautiful Juliette.

The Aftermath

I moved into my new house, went online to my Image Event account and printed out 4 photo's of Juliette and Baby Furball, bought some nice frames and arranged them on my new office wall, I also found a photo of Juliette and stood it in my kitchen window, every day I talked to her and told her how I missed her and loved her. There was a big warehouse set up for lost tornado cats (dogs, too, but they were in another building), and I went there numerous times looking for her, through cages and cages of cats, always hoping and never finding. I fell apart every time I went, came out of there just sobbing.

Two months and four days went by. My ex-neighbor, Bobby, was trying to hook me up with a contractor he had hired to demo his house. He called and talked to my friend, who answered for me, to say he and the contractor were at the house and he had seen a Grey cat sitting on my porch. He asked, "Didn't Marlene lose a cat in the tornado?" My friend said "yes, she did" and he began to describe Juliette. Bobby said, "Well, this cat ran under the house when I tried to get it to come to me and I think it is her cat."

I said "No way can it be her but let's go look and if I can get my hands on it I'll bring it home anyway. So off we went, I was thinking it might belong to one of my neighbors North of me. They lost two cats.

When we got there, Bobby had taken water over to my porch and called his sister to bring a can of tuna over to coax the grey kitty out of there. I can't talk to call for her so my friend did the calling and I patted my leg like I do to get them to come to me. My friend was laying on the ground looking through the crawl space where she supposedly went. There was a well worn pathway.

I was just standing there by the porch, about 15 minutes went by, and my friend said, I hear her meowing, then pretty soon he said, I see her, get down here, it's her! I dove to the ground to look and there were those beautiful bright orange eyes looking back at me, I reached in and let her smell me and she started loving and purring, I grabbed her by the nape of the neck and drug her out of there, hugging her. Then I handed her to my friend and fell apart crying right there on the ground, thanking God she was back home with me.

I took her to the vet and she is in very good shape, didn't lose much weight, everything checked out good on her, her hair fell out and she looked scraggly but she is beautiful to me. How did a pampered Persian that has never spent a minute outside in her life, survive 2 months and 4 days under a house by herself. We will never know. She endured some really adverse weather as it was in the 100's plus every day.

I still say my prayer every day and thank God she is back with me, I love her so much.

 

 

 

 

 

My Summer Vacation at Camp Nana

 

Hello Mudda, hello Fadda,
Here I am at Camp Granada.
Camp is very entertaining
And they say we’ll have some fun if it stops raining.

 

I bet a lot of you remember Alan Sherman’s comic genius. Just Google “Hello Mudda” & you can listen to a live version of this Grammy award winning classic from 1963. Back in the sixties, I was just another kid who absolutely loved sleepover camp. From Methodist Church Camp to Girl Scout and Music Camps and the la-di-da of private Camp Se-Sa-Ma-Ca, I couldn’t get enough of the woods, the lakes, the cabins or tents and most especially, counselors instead of parents. For me, summer camp was a chance to be daring but not dangerous. I felt brave and unfettered. Away from the small watchful community of eyes and expectations at home, I discovered myself, both the good and the bad. I had a hard time coming back when camp was over.

What made it so special was the opportunity to re-invent myself, to see myself in the eyes of others the way I imagined myself. As I learned new skills, like getting my LifeSaver Certificate or doing a 360 on trick skis, I became someone different. I was still a total dweeb when I got back to my hometown and school but I now carried within me a belief that someday I, too, might possibly be cool.

It is nearly fifty years later and my definitions of what it means to be cool have changed considerably. But I feel as though this summer I went back to camp. I have a grand-daughter who turned two in March. That means this has been the summer of discovery. I have spent countless hours watering the deck, the pots of rosemary & parsley and our feet. I have examined bugs and twigs and the cat’s claws. We have swung in a hammock and watched the wind move the clouds. We have filled the bird feeder and put little dishes of water out as bird baths. We have hollered, “Birdies, come drink, now. Take your bath!” and puzzled why they didn’t respond. We have dug in the garden, swum in the pool and even gone pee-pee in the potty. That last one I actually figured out a while back but a good Nana shows solidarity on these matters.

I, too, have learned things this summer:

  • First, summersaults are surprisingly difficult when you are 58.
  • Second, potty training takes a lot of attention. And it helps if you roll up the rugs.
  • Third, a Servox is a toddler magnet at Library Story Time.
  • Fourth, when you are two, everything is new and exciting and so much fun. It is sometimes hard to contain yourself and that delight is infectious.
  • Fifth, being the Head Counselor at Camp Nana means I am finally, seriously, cool

.
I haven’t had this much fun since I short-sheeted that counselor at Cedar Cove, learned “Reach, throw, row, go” and “rescued” her one cold rainy August morning executing a perfect “tuck, dive, turn & hold” as I hauled my 120 pound “victim” back to shore using a one-arm side stroke. Maybe not that impressive except I was 12 years old and weighed about 80 pounds. I was cool that day.

I was pretty cool yesterday. Kayleigh gave a tutorial on my Servox after Story Time. She had a rapt audience of toddlers and their moms. I hope that someday she will understand how sorry I am that I couldn’t teach her how to do a ”dive & turn rescue” or do funny voices for the books we both love. But I suspect she will always know that I took the time to examine the bugs and water our toes. And that makes me one cool Nana. I love summer camp.

I am the Head Counselor at Camp Nana and I wouldn’t have it any other way.

 

 

 

 

 

What Do You Use For a Stoma Cover?

 

Debbie Wilson - Caregiver 2007

 

Altho' my husband has a trach, someone on this wonderful site said a good way to cover it when showering was with a foam rubber visor which we easily found at Party City. We laugh at the colorful varieties, but we sure like the .99 cent price tag.!!

 



Jim Maloney - 2004

 

Throat Coverings... it's 24/7 and here in winter Brrrrrrisk Pennsylvania.. warm.
Major risks were dry /sticky bits that oft bleed and most disconcerting.

For the ladies seems infinite glamorous choices... winters ~ knit kinds seems best. Looking like classic sporty British scarfs!

 


 

Bob Kanjian - 2002

 

Since early 2003, I use a flexiderm HME daily. Thanks for asking.

 


 

Linda Palucci - 2002

 

I'm sure you are all familiar with those cotton square scarfs that "cowboys" wear. They come in all kinds of colors and prints. So I can coordinate them with what I wear.  They sell for a dollar most places.

I buy them, wash them, and then cut them diagonally so I have 2 triangles. I tie the ends around my neck so the point covers my stoma. Up north I used to wear the Buchanan Stoma Covers, under them when it was cooler. I pinned them together with a decorative pin. Here in Florida it's too hot most of the time for the Buchanan so I just use the scarf. Why? Because it's easy, covers, cool, and cheap. Easy to slip my finger under to speak. I also use a few other small square scarfs, silk, etc., sometimes for dressy, or holidays, such as Christmas.

 


 

Rolf Wippermann - 2005

 

I have tried several stoma covers but it was impossible for me to wear them for more than a few minutes because I cannot stand to hear when breathing out. I don't know if this may be a contribution to your research. Best wishes.
Rolf from Germany

 


 

Len Hynds - 2004

 

A BADGE OF HONOUR
I have tried all sorts of covers for the stoma over the last seven years, but I have always returned to just a dampened white Buchanan bib. When I left hospital, my Nursing Sister said, "There are some laryngectomees who hide themselves away. You are a very special person, a survivor from cancer, and you will talk again. Wear this bib like a badge of honour."

I soon found that the curiosity of people gazing at my bib, turned to amazement when I spoke, and as they asked me how it all worked, and I explained, their admiration was obvious. I always make a point of apologising to people I meet for the first time for my 'artificial' voice, even cashiers in supermarkets, and you are never forgotten. You are greeted with friendly smiles everywhere you go.


In my own small way, I am teaching everybody I meet, that we laryngectomees do exist, and I have so many genuine friends.
Len of Ashford, Kent, England ( Speechless Poet)

 


 

Bob Keiningham - 2008

 

There are lots of ways to skin this cat, but I use the tan 2.7" X 2.7" foam flaps from Inhealth twenty-four hours a day. They're comparatively inexpensive, quick and easy to use, filter the air I breathe efficiently, keep bugs from exploring my stoma and I can carry a half-dozen replacements in my pocket.

It's probably just my imagination, but it also seems that I can control my voice (from a whisper to a shout) better with thumb occlusion than I could with the buttons. I tried the button systems and they were easy to use, but I couldn't stop blowing out those adhesive plates that hold the button (I tried every size and shape), I suspect it has to do with the shape of my stoma. I also found that the buttons frequently got "irreparably" plugged with mucus when I coughed and I had to carry a lot of "stuff" for replacements when I went out. (Mucus is a problem with the flaps also, but they are much easier to replace).

The only problem I've had with the flaps is losing the adhesive when I perspire playing golf (or while watching the stock market lately!), but it's easily overcome with a dry towel, and quick replacement. A trick I've learned when stoma gets too dry is that of soaking a flap (while keeping adhesive dry) with water and strapping it on for an hour or so when I'm home for extra hydration. 'works pretty good!

Finally, I also bought a couple of those cloth stoma protectors for more "formal" occasions and I thought they looked pretty "snappy", but the velcro scratched my neck and they prompted some crude commentary from a few of my more red-necked buddies so I decided that the "sophisticated" look wasn't appropriate among my "Damned Oakies" and just put them away for my next trips to NYC or L.A.




Mike Cohn - 2010


During the day, at work, I use an HME and I cover my neck with fantastic dickies made by Nancy Horvath (fashionsforyourneck@msn.com) who I found on WW.

After work when I tend to wear T-shirts, I wear bandanas to cover the HME, if I am going out in public. The bandanas and dickies add extra warmth to the air I breath and help prevent the HME from falling out, which it does on occasion. I don't cover the HME at all in the house, and just use a foam pad when I go to sleep. It works well for me.

 


 

Linda Addis-Hinske - 1997

 

I think it is important for everyone to use some sort of stoma cover. Think about the gunk that is floating in our air. Ever look at a sunray coming into your home from a window and you see those floating, little dust particles. Without a cover, you are breathing those in. Think about being outside. If you live in an area where you get a lot of little flying bugs, fruit flies, dust, and not to mention Bees (yikes) they can easily fly into the stoma without some sort of covering.


Forget about "flying" things now and just think about coughing. If you are a person with a lot of mucus or little mucus, the fact is, there is mucus coming up from stoma when coughing. Having the stoma covered in some way, would help protect those around you from getting sprayed and would ease the embarrassment to you.


Before my surgery, I hated, literally hated turtlenecks. Now they are my new BFF. Never leave home without it. Along with wearing turtlenecks, I also wear a stoma foam filter. I am doubly protected. I have gotten use to wearing these even in the hot, humid weather we have been having, and have done so since 1997.


Everyone has a choice and a preference, and what might be good for me may not be for someone else.

 


 

Mohan Raj, Bangalore - 2010

 

I must congratulate the staff of "Speaking out"for having chosen such a useful topic. I cannot wait to read September Issue. I do hope a large number of Larys will speak out as to what they use and why? There will be so much to learn.

I am a Lary in Bangalore since Mar 2010. For more than six months I used nothing, mostly due to negligence and still not getting used to the rigours of the unique, new way of a Lary life. There after, up until now, I use Bibs, only when I go outdoors. Indoor I use nothing as I feel uncomfortable even with bibs indoors. At night during sleep I use nothing as I find it impossible to breath with bib during sleep.

I tried using HME Filter of Provox attaching it to Lary tube { I never tried attaching it to a base plate as I found it cumbersome and was not happy to use chemical wipes inviting skin problems near and around stoma. Also due to the location of my stoma almost between collar bones sealing with base plate is imperfect.}

HME Filters claim that its filter, warms and humidifes breathed air by retaining heat and moisture of exhaled air in the filter material. To me all these tall claims sound more like a sales pitch.I will tell- why? The expensive HME filter contains nothing but a thin piece of foam. It can at best filter like what a good bib can do. How can it warm as well as humidify? Once you warm humidity will come down. This is my reasoning to abandon HME.

As against this a moist cotton bib can filter wonderfully well besides keeping the trachea cool and humid.This is the system which can more effectively, I presume, retain heat and moisture of exhaled air as against a non moistable HME filter.

The sales pitch for HME Filter could have said that it looks more cosmetically elegant than a beggarly looking bib. I could not have disagreed with that! In life, simple solutions are best solutions. Regards to all Larys of the world.

 



Lorents Gran - 1997

 

Since I introduced the BUFF-headware (elastic circular scarf made from polyester) at the IAL meeting at Little Rock (2008) for use as stoma cover, I have not heard anything about its use in this respect. I have used these for more than five years now, and I am still happy with them. I know some were reluctant to use the BUFFs because they could not be heat-sterilized as polyester is broken down at high temperature. I have washed them with soap at 40 - 50 centigrades as I do with my woolen scarfs, which also are placed in front of the stoma.

I will be interested to know if there still exist a reluctance of using polyester in the covers.

 


 

Jim Olcott - 2010

 

I have been a lary for one year now so I haven't experimented much with stoma covers. I wear a lary tube for stenosis and I speak with a TEP.

During the day and at work, I use foam patches. They make it easy for me to occlude for speech and they allow easy access for coughing and cleaning mucus. In addition, the tan patches that I use blend in well with most anything so I don't have to worry about color coordinating.

For sleeping, working in the yard and hunting and fishing I use a cloth bib for a stoma cover. I find that it works better than the foam patch for keeping dust and insects out of my stoma. In the near future, my SLP wants me to try an HME for better protection against bad air and fine dust particles especially since I live in Bakersfield, CA. which has the dirtiest air in the nation. Thanks for letting me share.

 


 

Dave Ross - 2005

 

First, I do not refer to the device that is for the purpose of filtering the air going into my lungs as a "stoma cover". I feel it is more appropriately referred to as a "stoma protector". This reflects my view that what a laryngectomee places on or over the stoma should be for the primary purpose of sufficiently filtering/conditioning the air going into his/her trachea and lungs. In my mind, the word "cover" bears the connotation of covering up from view which should be the secondary purpose of the device.

For the most part I use a foam stoma protector which serves me quite well and do not further attempt to conceal it. I live in high humidity Florida and have practically no mucus issues. This choice is for convenience, not monetary, in that my insurance will cover whatever I choose to use. Whenever I go out, knowing that I will be in a setting that will require interfacing with others, I will utilize an HME with HandsFree. This is solely for my convenience. I do believe that laryngectomees should "cover" their stoma from public view as a matter of common courtesy; however, to what extent and with what device is not an issue that drives my behavior.

 


 

Elizabeth Finchem - 1978

 

As a new laryngectomee I was presented with all sorts of options like crocheted “bibs”, others made out of dish clothes and bias tape, or the fancy corner of a ladies handkerchief (those were suggested for bedtime apparel. Really?) I tried the cotton crocheted variety because I could wear them damp or wet during the winter with very dry air. From the start I was determined to adorn my stoma with something from “over the counter” that would disguise my stoma yet look like something other women were wearing. I’ve written about what I discovered along the way in an article entitled 'Fashion and the Laryngectomee' in "Self Help for the Laryngectomee."

I deviated from my 'over the counter' mission with the purchase of a shell from the Shell Shack while visiting my mother in Florida. At first I used the shell as a scarf guard to keep the scarf material away from my stoma and the mess that can run out of it when we bend over. One morning as I was waking up I pondered if it would be possible to feed a silver collar I own through the back of the shell since the collar is about 1/4 “, open in the back and has some spring to it. It worked!

Besides fitting snuggly into the depression between my collarbones and over the stoma it looks like a piece of jewelry. The best part of this accidental discovery was the fact the shell is a natural substance so the interior chambers collect moisture upon exhalation. So, it covers, and serves as my heat/moisture/ exchanger. The best part is, all these years later, I still get compliments on the beautiful necklace everyday. It is my “go to” piece because it is lightweight and comfortable to wear. It has become my signature piece of jewelry. I am often asked where I got it? I must confess it is a $5.00 shell I bought in 1983. I added the shell to a designer’s silver collar that I bought earlier with a silver leaf folded over the collar that be can slid off the collar easily.

Yes, I’ve tried the HME and found that I am claustrophobic. At home I often go uncovered. I live alone so there is nobody here to be offended by my choice to be comfortable in my own home. The 100+ summer temperatures in southern Arizona make it simply too hot to wear much of anything, including jewelry.

 

 

 

 

 

Two Greatest Resources



The most common phrase I see used on WebWhispers postings is “We are all different” and it is an absolute fact-certain truth relative to every human being on the planet. I believe that taking a look at how we use our two greatest resources is especially important for those of us facing life-long challenges. I’m talking about our time and thought.

We all have fourteen hundred and forty minutes of TIME available to us each day and we are free to THINK about anything we choose to think about, anytime we choose to do so. Time is the more limited of our two greatest resources regardless of who we are. Oh, we are indeed “all different” in terms of the time we have left in this life but every single person in the world faces the same unyielding limit each day. We have just 1440 minutes that we can spend productively, reflectively, recreationally or frivolously … because we cannot “save” even one second of time.

I first became interested in time management years ago when a guy pointed out to me that wasting just seven minutes each day amounts to losing more than one forty hour work week each year and it didn’t take any mathematical genius to determine that I was losing a couple of months or more! His “wood chopper” example also hit home with me. He said some woodsmen spend most of their time sharpening their axes and far less time actually chopping wood, while others spend most of their time chopping away at the woodpile while seldom, if ever, stopping to sharpen their axes. It’s the guy who manages his time effectively in each activity who outstrips them both.

That’s when I began experimenting with time framing my 1440 minutes a day more effectively (doing the right thing) and efficiently (doing the thing right) by breaking it into productive, reflective, and recreational activities with “start-stop” deadlines for each. Productive activity is something from which we seek a specific return: cleaning my stoma, finishing this article, exercise, projects, chores or chopping wood. Reflective activities are those that involve improving our capabilities: study, planning, preparation, rest or sharpening our ax. Recreational activities are either fun or fulfilling: family, sports, TV, light reading, friends, etc. and no matter how big our “woodpile” becomes by managing our time, it doesn’t make much sense without adding some recreation to our life.

Fortunately, each day breaks up neatly into three eight hour periods and that’s the basic allotment I have employed for years to manage the time I invest into those three activities, with more detailed times added within each major time frame. It has allowed me to get more done, gain more capability and have more fun than anything else I could have done to “be all I could be” because time is always limited!

Thought, on the other hand, is practically an unlimited resource! We can think about anything we want to, anytime we want to, or we can just go with the flow and fritter away one of our two greatest resources by allowing circumstances or passing fancies to dictate what we think about. If you doubt me, try it right now. Just look away and think about something, almost anything, that has nothing to do with this discussion and then come back to me, okay?

Welcome back! Our topic is better management of our thoughts and through trial and error I’ve come to the conclusion that specific objectives and goals for each day, month and year of our lives is the absolute key to control and direct our thoughts more effectively and efficiently. Start-stop deadlines for pursuing specific objectives and goals are the key to developing the kind of gun-barrel vision that allows us to focus our thoughts and exclude anything else for short periods of time each day.

After preparing their stores for the day ahead, old time merchants use to knock themselves out, win, lose or draw, on the first customer of the day just to wake their minds up to the job at hand. That’s what I mean by a starting place for each phase of our day. And most of you will admit that some of the most creative work you have ever done, those times when ideas seem to come to you out of nowhere, occur when you are running out of time on a deadline. Time framing of specific objectives throughout our day is the best method I know for focusing this great resource instead of allowing it to wander here and there without meaning or purpose.

I believe that those two skills were forced upon every lary during the process of surgery and recovery that this lousy disease brought into our lives. I know they carried me through prostate, vocal cord and lung cancer in earlier years with the kind of effort and attitude I needed to arrive at the other side of successful treatments with the same wonderful life I had previously enjoyed.

Then came September 18, 2008 and a few hours with Dr. Medina at OU Medical Center. He saved my life that day in Oklahoma City by cutting my throat to remove the massive cancer around my larynx and taking a chunk out of my chest to reinforce the stoma he stitched into my neck to provide a means of breathing for the rest of my life. The rest of my life?! I awoke from surgery that day knowing that this deal was different. Gone were all my goals! Gone were all my time management deadlines! As I lay there with tubes and drain bulbs hanging all over me but free of any real pain, I had time for just one thing and I thought of just one thing. I wanted to get up and walk!

And I did, later that first night. I gathered all those bulbs and tubes into my gown with my butt shining behind me and started down the hall. Of course, they chased me back into bed, but I had walked! The next morning I argued until they let me do it again … and again … and again; trailing various family members behind me as we went from one end of that ward to the other, over and over and over. Then they started taking all that “stuff” off me and I replaced merely walking with a desire to talk, which I did by wearing everyone out with my notepad and pen, mostly about “when can I go home??”

I was encouraged by a visit from fellow lary, Bill, from Oklahoma City’s lary group. He was a fellow golfer, veteran and spoke so well with his TEP that I hated to see him go that day. Then, as they prepared to release me, my new “voice” walked in the door in the form of Tracy Grammer, SLP. She proceeded to outline all my options for the TEP they would install when I returned the next week with a no-nonsense air of professionalism, that I’ve since learned is her way of handling the incredible compassion she feels for us.

I went home that day to continue walking, walking and walking, with no goal beyond that, and no time limit on the effort until I returned to OC for the TEP. Then I thrilled Tracy, my family and myself with a different, but very clear, voice within minutes of installation. On the way home that night I became concerned about all the mucus that developed as I rattled away with my new voice. I e-mailed Tracy the next morning with those concerns and she advised giving it a little time. I remained concerned, but soon she proved to be correct, as the problem diminished. Then I became concerned about specs of blood I found in my stoma. Out went another e-mail, and her reply was the same. She was, again, correct. Over the next few months I’m sure I drove Tracy and Dr. Medina nuts with my concerns and worries at each check up as I found many more things to worry about from others’ experiences on WebWhispers.

Then one day it dawned on me that most of my time and thought, most of my use of those two precious resources, was being expended on a situation that was going to exist for the rest of my life and I resolved to try and change that if I could. It began with setting aside a period of time each morning and evening to examine my stoma, clean it, take my pills, and do my swish and swallow exercise with Niaspan. I’ve since added a cup of yogurt three times a week, courtesy of a tip I read from some genius on the WW list. I give my stoma about ten minutes a day - period.

Between those two five - minute periods, I just accept what my stoma gives me that day. Sometimes it’s copious amounts of mucus, other times it’s violent sneezing and some days it just leaves me alone. But whatever it is, I just live with it while I use my time and thought to attack whatever particular goals and objectives I’ve conditioned my mind to believe are important to accomplish that day (although many of them aren’t!) and I’ve got a long list of stuff for future use when I have time to think about them!

Oh, and about those people who stare at this flap on my neck every time I go out; it’s turned out to be a blessing since I discovered that a smile breeds a smile in return! I put a big grin on my face when I catch somebody staring. That practice has even emboldened some young kids to come up and ask, “What happened to you?” I enjoy their wide-eyed response as I tell them and add a message about smoking.

I guess I can sum it all up with two thoughts. When we take care of our stoma, it takes care of us, even though it gets a little finicky from time to time. Then, if we fill our time and thought with tasks we’ve created for the day at hand, it frees us from needless worry, while filling us with confidence that someday, when something comes along that we cannot ignore (which it most certainly will), we can just flip the switch and focus all our time and thought on dealing with the problem then … instead of wasting time and thought on it today.

Nuf-Sed!

Bob Keiningham
Broken Arrow, Oklahoma

 

 

 

 


 

Footfalls




I am desperately trying to get back to a normal life, after losing my beloved Tilly, but I guess it will take time. I do get a daily phone call from each of my children, but having no one to look after, I sometimes feel at a loss. I get out as much as possible, and I still have many letters to write, thanking all those people who sent wreaths.

 

We were so well known in the town, the laryngectomee wearing the white bib, pushing the wheelchair with the lady who always smiled and laughed with them. I realised that pushing that wheelchair became like a walking frame to me, and since it has gone I find that I occasionally stagger, so I have taken to carrying a walking stick. Whatever next !

Over seven years, after my three cancer operations in rapid succession, Tilly and I were out shopping. She was still walking at that time and as we held hands, she led me into St Mary’s. I was surprised, as St Mary’s was not our own parish church, but the central original church from when our little town of Ashford was a medieval village some six hundred years ago. It is full of beautiful stained glass windows, stone monuments and statues of knights in armour and their ladies. Seeing my surprise, Tilly said, “ He answered my prayers. I want to give thanks to Him for giving you back to me for a few more years."

The cancer tumour in my throat had been so large, and the prospects not good, that she, like everybody else, had been convinced that I would not survive. I must admit that I thought the same, so had even gone so far as to make secret arrangements for all my finances to be settled, so that she would have no debt or worries. [That entails another story for another time] After my recovery and that first visit, whilst walking around the town, she would often say, " Let's go in". I sat in a pew, she in her wheelchair, and we would just gaze at all those things of beauty, in peace and tranquility.

I wandered in there yesterday, and sat in the same spot. There was no one else there, but I really felt her presence. I wrote down exactly what I felt, and after being there an hour, I had written a sort of poem.





Your Footfalls

I listen for your footfalls,
in my heart,
since sadly my love, we had to part.

Oh! how could you leave me,
so alone,
tearful, unhappy, and so on my own.

I listen for your laughter,
day by day,
hoping to hear it and fervently pray

that soon I will hold you,
close, once more,
and talk with my old voice, of that I'm sure.

I listen for your love,
that filled my life,
from bygone days, when first my wife.

Oh! what joys we shared,
one with another,
our children they had, the most perfect mother.

I'm here in St Mary’s,
thinking of you,
silently sitting, alone in this pew.

The angels sing,
cherubs smile their part,
your footfalls I hear, coming back to my heart.

 

 

 

 

 

Hello fellow WebWhispers,


I was recently asked to participate in a Laryngectomee study for the local University. The study is being done so that those involved would be anonymous and the participants could refuse to answer any of the questions. The information will be used to aid in the teaching of Speech Language Pathologists and help in the understanding of the speech challenges that Laryngectomee patients face.

I gave them an overview of my background and my cancer history so they could understand the medical issues. I completed a questionnaire containing simple questions on how it affected my daily life and how others reacted to me. I was asked to come to the University and was recorded reading several sentences and passages that will help the students experience first hand how I communicate. The process was very easy; I was treated with much respect and they compensated me for my time and expenses.

If you have the chance to be involved with one of these studies, I would encourage you to do so. The information will help medical personnel to understand what we deal with and how we meet these challenges. Overall it was a rewarding process that could help other patients in the future.

Ron Mattoon
Jan 2010

 

As a cancer survivor, I have a new outlook on life and the world.

I love challenge and helping others.

Love my good ol country music; love to play the drums and guitar; can't sing any more tho!!!

People may not remember what you did or said but will remember how you made them feel.

And remember:

"I got along without you before I met you
and I can get along without you now"

Jimmy Lafrance - Facebook Profile (with his permission)

 

 

 

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 32 new members who joined us during August 2011:

 

Richard (Richie) Anderson
Nicholson, GA
Nancy Bell
Sherman, TX
Anthony Camargo
Palm Desert, CA
     
Ron Carlson
Blackfoot, ID
Leslie Caulfield - (Caregiver)
Windsor, CA
Mike Caulfield
Windsor, CA
     
Ronald Clark
Cannifton, Ontario, CAN
Holli Clendenin - (Caregiver)
LaGrange, GA
Lisa Cox - (SLP)
Lee's Summit, MO
     
Gary Curnutte
Garnett, KS
Melody O'Dell - (Caregiver)
Garnett, KS
Jo Dorrel
Fremont, IN
     
Richard Embry
Jupiter, FL
Claire Henchy
Co. Dublin, Ireland
Joe Hilsabeck
Edelsterin, IL
     
Terry Janzen
Nanaimo, CAN
Patty Lackey
LaGrange, GA
Calvin Lawrence
New Haven, CT
     
Kathy Listman - (Caregiver)
Livonia, NY
Ina Lively
San Diego, CA
Connie Miklautsch
Lake City, FL
     
Richard Mulder
Grand Rapids, MI
Jamie Ogletree - (Caregiver)
Nicholson, GA
John Quirk
Shelbyville, KY
     
Robert Rains
Hot Springs Village, AR
Denise Rudy - (Caregiver)
Highland Lakes, NJ
Jerry Southard
Mocksville, NC
     
Floyd Stinson Murphy, TX Sharon Sweet
Sterling Heights, MI
Giannis Tzomakas
Prevenza, Greece
     
Sarah Vanderpuy - (SLP)
Carrboro, NC
Barbara Wonsowicz
Staten Island, NY
 

 

 

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.
 
As a charitable organization, as described in IRS § 501(c)(3), the WebWhispers Nu-Voice Club
is eligible to receive tax-deductible contributions in accordance with IRS § 170.
 
  © 2011 WebWhispers
Reprinting/Copying Instructions can be found on our WotW/Journal Index.