HEADLINES
Pat Sanders, Editor
Kirklin Clinic Head & Neck Cancer Support Group, Birmingham, AL
distributed by American Cancer Society
July, 2001

Losing My Voice                                                            by Paul J. Sampson

By the time you read this, I will have spoken aloud, in my own voice, for the last time. In a few days a team of surgeons, in order to save my life, will remove my larynx and a good bit else from my throat.

I am not foolish enough to think this is a bad trade: my voice for my life. It’s a better deal than a lot of people get. And yet... Think of the sacred things we say aloud, words about speaking and hearing. Sh’ma Yisrael Adonai Eloheinu, Adonai Echad: "Hear, O Israel, the Lord our God, the Lord is one," begins the great Hebrew prayer. In my own childhood, Domine, exaudi orationem meam, said the priest in his Italianate accent: "Lord, hear my prayer," and I responded in my altar-boy Latin: Et clamor meus ad te veniat, "And let my cry come unto Thee." And similarly, a pious Tibetan may say of those he reveres, Drag tong kye gag med pa gyal wai sung, "The union of sound and emptiness, beyond origination or cessation, is the enlightened speech of the victorious ones." And think of any of the thousand things, trivial or vital, that we say aloud each day. We want, in our deepest hearts, to be heard. We want to speak.

"My voice" has at least a double meaning in my life. In the literal sense, of course, it is the articulate sound of speech, in the characteristic pitch and cadence and timbre of an individual named Paul. This kind of voice is so characteristic of each of us, in fact, that people can be identified by "voiceprints" accurately enough to satisfy a security system that we are ourselves and not imposters. It is so specific to each of us that we are astonished and applaud an actor who can impersonate someone else. We can recognize one another solely by listening. We can even (or we think we can) tell when someone is telling the truth by his "tone of voice." In fact, we rely on our voices to convince one another of our truthfulness (or to make sure that others know we’re only kidding, another kind of truth-telling). A pretty flexible instrument, this voice.

It’s also an aspect of our very selves. We are who we sound like. I think that one of the many torments of puberty is the changing voice; all of a sudden, we can’t trust our voice to tell the world who we are. (Is this only for boys? I bet it isn’t.) Oddly, most people don’t know how they sound to others. In fact, nobody did until Edison invented the phonograph. To this day, most people are surprised at the way they sound the first few times they hear their recorded voices. Pretty soon, of course, we learn that this stranger on our answering machine is really us, telling us that we aren’t home.

To tell you the truth, I’ve never been fond of my voice. This may surprise those who think I talk too much, but it’s true. Too "young", too thin for a person of my age and gravitas, I would have said until recently. And my singing! It’s been a scandal since childhood. When hymns were sung in church, the nuns used to tell me: "Just move your lips. God will hear you." It hasn’t improved with age. In all my 61 years, nobody has ever said to me: "Please sing that again."

Until the surgeon’s diagnosis, this troubled me, and I hoped to improve. Now, as you may imagine, I would happily lower my standards until my voice met them, if only I could keep my voice. Not an option. Instead, I will settle for whatever form of utterance I can salvage from the wreckage.

There are several kinds of reconstructed "voices" available for those who lose their larynxes. The oldest, familiar to most of us, is the electric voice-box that the user holds against the neck while speaking; it produces a buzzing sound in which words can be distinguished, but it is absolutely monotonous and devoid of personality. It sounds like something from a cheesy sci-fi flick. But it works, and that’s what I’ll start with. But the surgeons will implant a little valve in my reconstructed throat—I will spare you the details—which eventually may let me speak a good deal better. With diligent work, good therapists, and a bit of luck, I will someday have a "voice" that will sound like someone with a severe case of laryngitis. This voice will not "sound like me," but at least it will enable me to speak with a pretty good range of expression.

For someone whose life has always been involved with words, that’s important. I said earlier that my voice has at least a double meaning to me. The other voice, of course, is the one that reaches you from the written word. Writers who write about writing (something I do rarely and reluctantly) often speak of an author’s "voice" in an obvious metaphoric way. We speak of the sounds of a poem, the cadence of an essay, as if we could hear the author speaking the words. We do this even of poets like Homer, whose language has not been heard in its original accents by living men for nearly 3,000 years. We make these audacious claims with astonishing confidence, not only because we are audacious creatures, but because there is in fact something very much like "voice" embedded in the written word. Each author develops a diction, a vocabulary, a style, a rhythm, a bag of tricks, so characteristic that it is the most obvious of metaphors to call it a voice. And we feel entitled to reproduce their work in our own voice. The current Poet Laureate of the United States, Robert Pinsky, explains why in his valuable little book The Sounds of Poetry. Introducing his book, he says: "The theory of this guide is that poetry is a vocal, which is to say a bodily, art. The medium of poetry is a human body: the column of air inside the chest, shaped into signifying sounds in the larynx and the mouth. In this sense, poetry is just as physical or bodily an art as dancing." But unlike dancing, Pinsky says, "...the medium is not an expert’s body, as when one goes to the ballet: in poetry, the medium is the audience’s body . . . the [poet’s] medium is my breath." In other words, we have a perfect right to read the long-dead immortals in our own voices. As Pinsky puts it, "The reader’s breath and hearing embody the poet’s words."

Well! This I take as liberating to one like me, whose own vocal apparatus is shortly to be scrapped. The medium of my poems, the medium of this essay, is your breath, not my own. I advise you, by the way, to take deep breaths: I write long sentences. Still, I am sad to lose the ability to read my own work aloud. Certain modern critics to the contrary notwithstanding, I believe the author knows quite a lot about his text. I am sure I will learn new things about my writing as I hear others read it, but those voices will never quite rhyme with my memory of my own.

There is another cultural loss to consider. Listen to this from the poet David Graham, who is Associate Professor of English, Ripon College, about one way in which the world of poetry has evolved in our lifetimes: "...usually attributed to the popularity of Robert Frost and Dylan Thomas, with a wave of support from the Beats and others...the practice of The Poetry Reading. Whatever else you think of 20th Century American poetry, this new emphasis on oral performance did revolutionize the way many if not most of us approached poetry." Graham goes on to say that this new emphasis on oral performance has been largely a change for the good, and I agree. A poet who expects to read his work aloud is likely to write words that feel good to say and to hear.

My own exposure to "serious" spoken poetry (as opposed to classroom recitations of the "elocutionary" sort) began in college. In the late 1950s, my university (Loyola in Chicago) invited various luminaries to read. I heard Frost and Cummings, they were dazzling. And that was the period when you could buy live recordings of poets reading to jazz accompaniment. I must say the quality varied. Ferlinghetti was a treasure and still is; some are best forgotten. Today, there can hardly be an American city large enough to support a college that does not have some venue for poetry readings, often open to anyone brave enough to stand before others and recite. Many of these are appalling. I was going to offer some examples that I think are funny, but in view of what awaits me next week, I believe I ought to be charitable. Many of the performers at these events are, in fact, accomplished poets and compelling readers. Many of these I treasure as friends.

I have occasionally been dragooned into reading at these events. I remember these evenings as complex mixtures of terror and pleasure, much like the more adventurous rides at the amusement park. For good or ill, I have given my last reading. But I comfort myself with Mr. Pinsky’s insight. The audience is the proper instrument for the writer’s work. Their breath will propel my words, their lips will shape them, just as we all have always done with the writers of past ages. And I, unlike my betters, unlike great Homer himself, will be alive to hear it.

I thank the distinguished poets and teachers David Weinstock and Barry Spacks for furnishing me the transliterations and translations of the Hebrew and Tibetan prayers.
Copyright 2000 Paul J. Sampson. Nov/Dec 1999 • Salon .
Reprinted by permission from Eclectica Magazine (www.eclectica.org).

ACID REFLUX – THEN & NOW               by Pat Wertz Sanders

A few days ago, I was preparing to write in to our online support group to continue the discussion about acid reflux and to make comments on what everyone said. Part of what I do in writing, editing HeadLines, and working on our web site information is to gather material and "put it together". I planned to mention again the "silent" reflux that several reported having prior to their throat cancer, when I was suddenly struck by how this affected me personally.

Before my laryngectomy, I had acid reflux - the kind that mostly didn't show and tell. I never had "heartburn". Back then, you didn't see the ads on "acid reflux" on TV telling you what it was and what to do about it. It was called "indigestion" or "heartburn" and they showed a figure with a glowing fire in the chest area. Tums or Rolaids were touted as the cure. And, it was something that everybody had! I never had that fire in the chest.

I would come in from my sales calls at varying times in the afternoon or evening, would check in with the office, make appointment calls, write reports, and then put it all aside until the next day. At that time, I would get comfortable, get my cigarettes out (I didn’t smoke during the day), fix a drink, and either get on the telephone with a friend, check out the news or start cooking supper. I did not realize that smoking, drinking, and eating late suppers, in addition to sleeping flat so gravity didn't help the acid to stay in my stomach, were creating a situation that was not good for me. I had acid washing up through my esophagus and into my throat at night and I didn't know it. I used to say I could eat anything and had a cast iron stomach… but it was sneaking up on me. I often had a sore throat and was hoarse but it would get better, so I blamed that on allergies and drainage or having to talk loudly over shop machinery. One night, I was awakened by a stomach spasm that gushed acid up like a geyser and by the time I jerked upright, it had hit the back of my nasal passages. Burned like hell. I was hoarse and had a sore throat for a week. This time I knew what caused it but I still didn't think about the other sore throats. Should I have gone to a doctor at that point? Yes. Did I? No. I was in denial that I had a problem other than that one time.

I think acid reflux was a contributing factor in my vocal cord cancer. That is my opinion. This is in addition to smoking and drinking, a deadly pair in which the combination is far more dangerous than either one alone. Until recently, very few doctors agreed with reflux being a causative factor, but now some are indicating there might be something to it. Looking at this from another viewpoint says it is not the acid reflux but the smoking and drinking that causes the cancer…along with aggravating acid reflux.

After my laryngectomy, I mentioned the reflux and was put on Prilosec. I took it regularly for a while but gradually cut back to every other day, then a couple of times a week and then, only when I needed it, and I didn't need it very often.

In the last couple of months, I have had an occasional problem with swallowing, not far down but seemingly at the back of my throat. Always in the morning. Synthroid, as small as it is, would stick a little before going down and once the water came up through my nose and the pill stayed in my throat. After I had sipped some coffee, it seemed to open up and I had no problem swallowing at breakfast or the rest of the day. This last week, it happened every morning. I could look in my throat and see swollen and slightly pinker tissues than usual and it felt like it does when you have sinus drainage...but there was nothing there. My throat felt just a little raw but no white patches, no fever. I hadn't a clue.

I was thinking about the acid reflux discussion when the lightbulb lit up over my head. I was having acid reflux at night again, when I didn't know or feel it. The acid was causing swollen tissues. Being upright during the day, gravity helped and it was not a problem although one day I did eat too fast and couldn't get the food down so I was probably having some swelling I couldn't see.

The day I realized what was likely happening, I took a Prilosec before supper and did again the next day. The third day, the morning pill went down easily. I will continue to do this to see if that ends my problem. I will also have an earlier supper...and cut out the ice cream snack right before bedtime so my stomach is not full. My bed is already raised on blocks, but I had been careless about the rest. I had my checkup last month and everything looked clear. But if this doesn't get rid of it totally, I'll see the doc for another look.

Who says we don't continue to learn? Many times has someone written to me to say...I already knew that, I just forgot? This just happened to me. I already knew. I forgot.

DOES DIET WORK FOR ACID REFLUX?       Max Hoyt,  maxhoyt7@msn.com

My experience with Acid Reflux had been all down hill until my wife heard something that made sense to us. Simple carbohydrates have a tendency to produce gas in many "normal" people. We decided at that point we would try anything as she was having a lot of problems and I was, too, but didn't want to admit it.

We were already on a low fat diet but, now, cut out white bread, almost all white potatoes, regular spaghetti, and sugar. These were the worst culprits in my diet. We are now eating sweet potatoes but no brown sugar with them, wheat spaghetti, 7/9 grain whole wheat bread and desserts with no sugar added. Marge is now cooking with "Splenda" a sweeting agent made from sugar but no sugar properties.

The test is in the tums bottle. Since we have been on this regime, we have not purchased a bottle of Tums whereas we were going through a bottle of 100 in about 8-10 days. Now, almost 5 months later, we are still doing well without sugars or high carbohydrate foods. The acid reflux is there sometimes when we eat out and don't stick to the "diet".

Just an aside from the acid reflux issue is the general well feeling we have. We don't seem to have the highs and lows we were both experiencing previously. Our overall energy level seems to be more level and stable. We plan on sticking to it at least until someone else on the WW comes up with something better.