WebWhispers Journal - May 2000

Internet Laryngectomee Support
May 2000

The Cover-Up

    WebWhispers member Bob Hodge attended a support group meeting where the speaker was a laryngectomee who said he never wears a stoma cover. Bob, who had his laryngectomy in 1998, asked several WW members who had gone to the 1999 IAL convention in Reno, Nevada how many laryngectomees at the convention did not wear stoma covers. The answer he got was "very few, including in meetings where there were only larys."

    Based on Bob's questions raised about this practice, those on the WW e-mail list were asked if those who preferred not to wear stoma covers would share their reasons privately with the editorial staff of WWJ, or publicly through postings to the list. A fairly small number responded both publicly and privately. But the public responses sparked a surprisingly heated debate relating to health issues, as well as the "etiquette" of being considerate of other people's sensitivities to uncovered stomas.

    Feeling that their incoming air was being blocked by the stoma cover was the primary reason given by those who do not wear them. Several also stated that their ENTs had not mentioned anything about covering their stomas, and they felt strongly that they would have been told if it had been a serious health issue or anything other than a matter of personal choice. This second reason was the explanation provided in an e-mail by the speaker at Bob's meeting.

     However, the consensus of experts reinforced by the best clinical evidence available supports the wearing of stoma covers. Based on an understanding of anatomy, the physical response by the body to the laryngectomy operation, and evidence from clinical practice, there is no evidence which would suggest that laryngectomees are as well off without stoma covers as with them.

    Indeed, all of the evidence points in the other direction: that patients are clearly better off from a health standpoint by covering their stomas. If laryngectomees choose not to cover their stomas they would be doing so despite the best available evidence.

    Stoma covers help to replace functions previously carried out by the nose and mouth in:

filtering airborne dirt particles, bacteria, viral agents, and other biological agents from entering the lungs via the stoma

retaining some of the moisture from the lungs which would otherwise be lost in exhaled breath

keeping some warmth from escaping in exhaled air

restoring some "resistance" to inhaled and exhaled breath which is helpful in retaining better lung function (an extended article on this topic will appear in a future edition of The WW Journal).

    Additionally, it is clear that some stoma covers are demonstrably better than others in performing these functions. For example, HME (heat/moisture exchange) filters are better than foam filters simply because unfiltered air cannot get around them. Also, a tighter weave lint-free fabric cover would be better than a loose weave crocheted one.

    There are a great many potential negative consequences for not wearing a stoma cover including:

increased danger of respiratory illnesses including pneumonia

greater mucous production

increased coughing

a higher probability of potentially life threatening mucous plugs

chapped irritation of the stoma walls

increased bleeding and potential for infection from drying out

more crusting and potential blockage of airflow through the stoma

an enhanced potential for dehydration from the loss of humidity in exhaled breath

reduced lung function from the loss of resistance

    Since the negative health consequences of not wearing a stoma cover as well as the benefits are so clear, the question needs to be asked why an MD, ENT (ear, nose, and throat specialist), or other healthcare provider would not make this clear to a laryngectomee?

    There are a number of possible explanations for this including that very little of their medical education or clinical experiences where likely to focus on the particular problems of laryngectomees. Most physicians have limited experience with post laryngectomy patients, and have not considered the issue of what functions were lost along with the larynx.

    The laryngectomy operation is a low occurrence for most ENTs, and the average professional is more likely to be up to date on problems which effect a higher percentage of their patients. The ENT and SLP (speech-language pathologists) may not be aware of the repercussions of an uncovered stoma because of limited professional education or reading of the current literature available on this topic.

    All ENTs and SLPs are not alike as far as their knowledge, skills, and experiences with laryngectomees goes. Unless they have a practice or are in a clinical setting where they see many laryngectomees, we are likely to constitute a tiny percentage of their average patient workload. Laryngectomees may be expecting too much expertise from the average non specializing ENT or SLP. As one SLP put it, "most physicians have no idea that laryngectomee products (such as foam filters and HME, heat/mositure/exchange filters) even exist . . . " with the possible exception of the TEP prostheses.

    In some cases, the ENT may not make an issue of pointing out the advantages of wearing a cover because they may assume you are wearing a cover all the time when you are not in their examining room.

    Another possible explanation is that the ENT is assuming that you are working with an SLP on various "quality of life" issues including the benefits of wearing a stoma cover. The MD may assume that the SLP is taking care of this kind of issue. The MD might also work on the basis of "if it ain't broke, don't fix it." Certainly not wearing a stoma cover would rarely constitute an imminent life-threatening danger for most patients. Thus, complaints by the patient that they are experiencing restricted airflow as a consequence of wearing the stoma cover might cause the physician to remain silent on this issue.

    The ENT may also not make a point of it because they may assume you already know you "should" cover, but the patient has, for whatever reason, chosen not to. As one SLP put it, "We are so ready to defend everyone's 'personal choice,' that we may not make a point of 'arguing' with the patient. I know some MD's who don't even ask their (non-laryngectomee) patients if they smoke, and never counsel them to stop or offer the support as to how to quit."

    When asked about wearing stoma covers, another SLP remarked, "If I were a laryngectomee, I would not be caught without one."

    So if you are a laryngectomee who wears a stoma cover, give yourself a pat on the back. If you are among those who do not wear a cover, see the box above on "If you do not wear a stoma cover..."

(Thanks to SLPs Julie Barkmeier, Carla Gress, Vera Karger, Brian Shute; and editor's editor Pat Sanders for contributing ideas and editorial suggestions.)

The Letter

    Sometimes much of a life can be captured and reflected in a single act, a single object, or a single document. Such may be the case with “the letter.”

    Irene Venier had beaten cancer of the larynx thirty five years before a new bone cancer came along to eventually take her life. Characteristically, she fought this cancer right to the end. After she was gone, her granddaughter found the letter that Irene had written in 1963 while still in her hospital bed after having had her larynx removed. Irene and her husband, Harry, had saved it all of those years and, although faded and deteriorated, it was still legible.

    “I will never forget my first meeting with Irene. She was warm and considerate and so glad to have me as a new member of the club. She made me feel as if I had finally come home to where I belonged. She bubbled over with all the advantages the club offered and I immediately signed up” (Janet Ramakers).

    Irene was her club’s secretary, contact person, newsletter publisher as well as being very active with the American Cancer Society for more than three decades.

     “My grandmother was a woman who could find strength in any hardship as easily as she could find the nearest garage sale. Every day was an adventure with her, whether roller skating in her street or helping set up for the rummage sale at church, she lived each day to its fullest. She is the only person I know who could not ride a bike herself, but was able to help me ride a two wheeler by myself the first time. Her persistence to succeed was the fighting spirit that kept my grandmother going right until the end. The fighting spirit that makes me so proud to come from such a strong woman who never lost hope and never lost her laughter. This (laryngectomee support) club was one of my grandmother’s favorite things.” (Kathy Luciano)

(Thanks to Leonard Librizzi in whose newsletter Irene’s story first appeared, and for his help in obtaining additional photographs. Thanks also to Janet Ramakers and Kathy Luciano.)

Last Words - (Part One)

   "What was the last thing you said with your normal voice?" WW President Carter Cooper and Vice President John Edward's were discussing this topic at the recent TLA (Texas Laryngectomee Association) convention in Austin. Carter thought that for him it might have been a standard joke to the anesthesiologist hoping he had gotten enough sleep the night before, or just counting backwards. The question of the last words was asked of the membership in an e-mail. Here are some of the responses:

    "I was born British and used my English accent with pride. The last thing I said, to my anesthesiologist, before my surgery was 'If I wake up with an American accent I will demand my money back!' and then I went to sleep." (Frank Morgan, Silnt Knyt@aol.com)

    "Mine were 'Be gentle Doc, this is my first time.' Doc said it brought the operating room down to tears and relaxed everyone for the operation. He told me after that he knew then that I would be all right." (Jerry Kirby, JKTDK@aol.com)

    "As I had just finished my 'first' face-to-face, last confession (I thought I would die in surgery), they wheeled me out and my family and friends all lined the hallway. As I was saying 'goodbye,' I looked at my brother Linn and realized it was June 4, his birthday. I grabbed my then boyfriend (my now husband)'s collar and pulled him down to me and said in his ear, 'Please run down to the gift shop and get my brother a card and put $10.00 in it and sign it for me. It's his birthday today and I don't want him to think I forgot!'" (Jewell Hoffman, jewellsh@yahoo.com)

    "I knew at that time or at least thought that I would not make it through the operation so I told my wife and family 'Goodbye. I love you.'" (Rudy Dupler, rwdupler@toltbbs.com)

    "My last words were Arabic: 'Yah baha'ul abha: la e-la e-laha -- Oh thou the glory of God: [I testify] There is no God but God.'" (Paul Galioni, pgalioni@yahoo.com)

    "Before being ripped away from my family kicking and screaming just before being wheeled away, already goofy-headed, I quoted General MacArthur, 'I shall return.' Then to my family besides giving them my love and a hug, having been a truck driver or in the industry for some 27 years, I added an old trucker's saying, 'I'll catch you on the turn around and get-back,' meaning I'll see you again soon!" (Scotty Chandler, scottie_36201@yahoo.com)

    "I think I asked a lady 'friend" to fool around. Can`t remember her answer though. I was in the hospital for a biopsy and woke up with a trach tube sticking out of my throat. Hmm. I`ll have to phone and ask her what happened." (Ron Stepan, rstepan@mdi.ca)

    "Amen!", after a prayer for the Lord's hands to guide my surgeons hands." (Carole Matson, carole.matson@cox.net).

    "My last words where "I love you" to my husband and, and "take good care of me" to the anesthesiologist. I was scheduled for 9 A.M. in the morning, but because the surgeon was fast, they took me in at 7:30. My hubby was supposed to be there to take me to the operating room, but now he never could make it. I was in big tears and didn't want to go before he was there. So they picked up a phone and let me talk to him. In the meanwhile, all procedures went well so when I said those words, I got my first shot and passed out. It still gives me a strange feeling to write this down." (Marianne Peereboom-Kooijman, cel.mpk@hetnet.nl)

Lary Laughs

Judy Greiwe, jgreiwe@hsonline.net
The Bath

    I have a story about taking a bath. The first time I took a relaxing bath after my surgery was when we moved to our new home after getting married in 1998. We have a beautiful bedroom/bath combination with a huge, mirrored garden tub. I couldn't wait to get everything in place, unpacked and put up, so I could try out that beautiful tub with my favorite aromatherapy bubble bath and a tub full of very warm snugly water.

    I slid myself down into what was the most comforting feeling I had had in weeks (with all the moving, etc). Well, to make a long story short, I totally forgot I was a laryngectomee, slid down in the water clear to my chin, and nearly drowned myself! Thank heavens my husband was home and heard me. He came running in there, got me out of the tub and stood me on my head, and I spent the rest of the blasted night coughing my lungs out! So much for the beautiful, mirrored, garden tub. I take showers now, with a carefully placed shower guard around my neck.
(Marlene Snider, Smokefreeforever@aol.com)

Welcome New Members

   We welcome the 23 new WebWhispers members who joined us in April:

Scott Bachman Baltimore, MD ScottBachman@mris.com	Karol Beaufore Dearborn, MI Graumom403@aol.com	Frank Burke Brooklyn, NY burkefrank@hotmail.com
Michael D. Chicky Seeley, CA minute6@juno.com	Kim Cornish (Caregiver) Cherry Hill, NJ KAC1121@aol.com	Shannon Daut (Nurse) St. Louis, MO dauts@msnotes.wustl.edu
Vicki Eorio Richmond, VA VEorio@aol.com	Barbar Fauber Rowlesburg, WV ocelot323@yahoo.com	Gail Foster University Place, WA GailFoster43@yahoo.com
Karen Gallamore (Caregiver) Irving, TX Galla3@aol.com	Kris Garwood (Caregiver) Tacoma, WA bojuma99@prodigy.net	Robert J. Grennes Indianapolis, IN RGrennessr@aol.com
Sydney "Cyd" Kibbey Monterey, CA ckibbey@netpipe.com	Frances Kimberl Sierra Vista, AZ fjk@theriver.com	Donald O'Hare Flushing, NY OHareDP@aol.com
Sydney Purdue Tacoma, WA bojuma99@prodigy.net	William Rauter Chatsworth, CA therauters@email.msn.com	Paul J. Sampson Terrell, TX pauljsampson@yahoo.com
Marti Fellhauer-Sampson (Caregiver) Terrell, TX mfsampson@hotmail.com	Harihara Shankar Besant Nagar, India vikhmar@hathway.com	Herbert Shippmann Moraga, CA MrLectrik@aol.com
Barbara Stratton (Caregiver) Wilmington, MA momanddadz@comcast.net	Greg Worth Vancouver, BC, Canada worths@home.com

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.

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