HeadLines

Kirklin Clinic Head & Neck Cancer Support Group,  Birmingham, AL

distributed by American Cancer Society

Pat Sanders, Editor

February 2005

 

 

Over the Hump to Being Well Again                            by Tom Harley

 

I smoked my first cigarette probably when I was 12 or 13; I'm pretty sure I was still going to school at Most Blessed Sacrament, which was before I went to high school at West Philadelphia Catholic School for Boys. Just 3 or 4 years before that, I can remember 2 of my friends coming around one summer morning, telling me I should get on my bike and come with them, something big and secret was up, and not to ask a lot of questions. So, reluctant but curious, I followed them as we pedaled out to the farthest, least-populated area away from our neighborhood, an as yet undeveloped part of Yeadon, bordering Cobbs Creek Park. When we pulled up our bikes at this deserted spot, out came a little box of cigarillos (small thin cigars); the big mystery was that we were going to try smoking, something only the grown-ups did. I was surprised and shocked, immediately got up on my self-righteous high horse, invoking for some reason the supposed wrath of the Blessed Virgin Mary, refused the offer and angrily pedaled back home.

 

Not that I was any saint or particularly religious. I only did the minimum required to keep myself in a state of semi-grace, going to confession & communion monthly, Mass weekly, fighting the continual battle to maintain my soul in, at worst, a smudged condition (the catechism image of the soul as milk bottle) most of the time - saving myself from the eternal fires of Hell; playing the probabilities, that I'd be able to get to confession and absolution before I was 'taken' - at worst I might have to do some time in Purgatory. What got into me that day, what caused me to get in such a high state of dudgeon at the very thought of smoking, which was not even an explicitly named sin, in fact I'm not even sure if it would be classified as a mortal or a venial sin, but I was up on my high horse for real, the classic model of Catholic youth resisting temptation as if it were from Satan himself. 

 

A couple of years later I was picking up butts off the street on my way home from school. What happened, what caused such a radical change in a few short years? I fell in with the wrong crowd, classic case of not avoiding the immediate causes of temptation. Not that there was any real need to pick up butts off the street, cigarettes were readily available. It was cool to smoke, all the movie stars smoked. just about everyone in my family smoked (except for my grandmother), so there were cigarettes lying around everywhere, ripe for the picking. And what greater allure could anything have had than smoking for an adolescent? It was forbidden, it was done by only adults, it was almost a rite of passage from adolescence to manhood, and to top it off it was bad for you. Although just how bad it was for you wasn't spelled out as clear as it is now, lung cancer (or cancer at all) and emphysema were almost unheard of; the worst it seemed it could be was that it made you cough or maybe would stain your fingers yellow. Not that any of those serious threats or even the labels that cigarettes now have would have made any difference, we were kids and hence immortal.

 

I continued to smoke all through my formative years, by the time I graduated from High school I was up to a couple of packs a day.  If I was awake, I would most likely have a cigarette in my hand or at least have one going in an ash tray. After college, I would periodically try to quit - like after playing basketball or any sudden, unusual strenuous activity would leave me literally gasping for breath and just how bad, "bad" might be was brought forcefully home to me. But to no avail, stopping cold-turkey or gradually cutting down were equally unsuccessful, and I finally accepted the fact that I was hooked, that my life was going to be dominated by tobacco whether I smoked or not (either smoking or very much wanting to) so I might as well save myself a lot of grief and just smoke. So I smoked at various levels for the next twenty or thirty years, occasionally interrupted by an attempt to quit.

 

The first real "bad" effect of smoking happened when I was about 48, and was diagnosed with squamous cell cancer, a tumor in the area of my tonsils, that would require a radical neck dissection in order to remove it; my soft palate was also removed as well as part of my tongue, and a small piece of my jawbone, followed by six weeks of radiation as a precautionary measure. In my naiveté, I assumed with the current high level

of science, lasers and all, like I saw on TV, I'd be maybe in the hospital for a few days, followed perhaps by a week or so of recuperation at home, then I'd be back out on the streets doing the things I used to do. After the second week of my hospital stay, at the end of which I was only able to try to swallow a teaspoon of apple sauce, the reality of the situation started to hit me. I hadn't asked many questions about the recovery process and my surgeon only ventured that it was a very serious operation. When I was finally released from the hospital, I could barely open my mouth, had a feeding tube in my stomach and could hardly make any intelligible sounds.

 

Among other things, they sent me home with a stubby little pink plastic screw with a tab on the head which I was supposed to insert between my teeth and turn as far as I could several times a day; I was literally prying my mouth open a bit at a time. I could take liquids by mouth, and could take soups and such, but I had very little appetite and most of my nutrition came through the feeding tube in my stomach. Fortunately, I somehow came across a local medical supplier who provided me with cases and cases of Ensure Plus, took care of all the Medicare paperwork so it didn't cost me a dime, all in all, was very solicitous. How I came in contact with him was just a result of knocking on a lot of doors, following leads, and pure luck.

 

As it became more and more obvious that I was in for a long rehabilitation, severe depression set in, and my doctor prescribed Elavil (Amitriptylin) which in addition to it's anti-depression properties also had the nice little side effect of increasing one's appetite, which is just what I needed. I don't know which agent was the more responsible, but from that day on my outlook as well as my appetite were greatly improved. Still I wore that feeding tube for about a year until I could eat enough by mouth to sustain myself, but it didn't really slow me down that much (it's amazing some of the things we can adapt to). I drove everywhere, even from Philadelphia to Sloane-Kettering in New York for about six months (which was a complete waste of time medically, but was a life-saver emotionally, giving me a purpose while the healing took it's own sweet time); I'd just tape the tube to my upper stomach, throw a few cans of Ensure Plus in the car and off I went.

 

At the Hospital of the University of Pennsylvania (HUP), I was fitted with an obturator, an upper dental plate with a plug in the back that fills the space where the soft palate used to be. Without it, the voice is so nasal that it's totally unintelligible. While this was going on, I was practicing every night talking into a hand-held cassette recorder and, by doing this for a half hour every night, I was able to read "The Decline of the West" by Oswald Spengler, a fascinating book I probably never would have read had I not been in the condition I was in. I just picked the largest book I could find at the library for practicing.

           

With time, I got accustomed to the obturator, was able to talk and eat successfully, and was reasonably comfortable with my new physical configuration. For me, there's a moment, or so it seems, that I'm suddenly on the downside slope of getting well. In the course of a long illness I seem to get so accustomed to being 'sick', that it becomes almost the way it's always been, it becomes the norm, the way I make all my plans, and the way I live. But then at some point in the rehabilitation process, a single episode, an epiphany occurs that makes me realize that I'm actually getting better. In reality I've been improving every day, bit by bit, but I'm unaware of it, locked as I am in my 'sick' mode of life. Then out of the blue something happens that changes everything, something that signifies I'm over the hump, I'm on my way back to being well. This momentous moment I can remember still, it was as mundane an event as you could imagine, something no one else would be aware of, something even I might have let slip past without recognizing it, in not for some stroke of luck, some touch of grace. I was driving down West Chester Pike on my way home, a street I've driven down many hundreds of times before on my way home.

 

It was in late spring or early summer, the car window was open, the traffic was heavy, normal for that time of day, when I decided to turn on the radio, something I don't often do. They were playing a song that was one of my favorites, some random song from some random radio station, and it touched me in a place that hadn't been touched in a while. It wasn't that I hadn't heard the song in a while, it was just that at that moment I was touched by that song, and because I was touched, and realized the unfamiliarity of the touch, that I immediately knew I was getting better. There were no fanfares, no fireworks, I looked around and nobody else seemed to notice anything different, but for me it was as if a sheet of gray plastic had been removed from in front of my eyes, and everything looked suddenly brighter, clearer; everything looked right, made sense, everything fit. I was over the hump.

 

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Pneumonia?

 

I recently returned from a two week trip and cruise with a bad cough and fever. As much as I have heard about pneumonia and as many times in my life as I have had respiratory illnesses (and they were frequent before my laryngectomy, not so frequent after the surgery), I had never been diagnosed with pneumonia before and didn’t know much about it.  The comments from different people were of interest to me.  My doctor’s nurse asked immediately if I had been flying. When I talked with my SLP, she asked if I’d gotten caught by mycoplasma.

 

The doctor checked my temp (still the highest it had been..100.6 after 4 days of antibiotic that he had called in for me), listened to my chest, and made an x-ray which showed a small area in the right lung.  He said to go ahead and finish the first antibiotic Biaxin and then start the second one he was going to prescribe for another 5 days.  This one was of the Cipro type of antibiotics. I also got an antibiotic shot.

 

 In addition, he prescribed some potent cough syrup that would let me sleep at night, an albuterol spray and guaifenesin.  The antibiotic was a large pill but was the type I could put in my pill cutter and reduce as small as I needed. The guaifenesin, 600mg, was the delayed release kind that you are not supposed to cut so instead of the pills, I got liquid Tussin, the guaifenesin expectorant that loosens and relieves chest congestion.  We larys often take it for thinning mucus. I bought this at Walgreens where it is labeled Wal-Tussin but many know it by plain Robitussin (NOT Robitussin D or CF…just plain).  They tell you on the bottle that you as an adult can take 2-4 teaspoonsful every 4 hours, I figured at 100mg per teaspoon, it would take 6 to make up for one pill of 600mg.  Knowing that three teaspoons equals one Tablespoon, I asked the druggist if I could take 2 tablespoons at a time (600mg) and she double checked and said yes.  A reminder about guaifenesin…always take with a full glass of water.  If the medicine can’t get the liquid needed to thin the mucus, it doesn’t work right. By the way, you can now purchase Tussin in a diabetic formula to avoid the sugar in the syrup.

 

 All this left me curious about pneumonia so, as soon as I got over the fatigue associated with this disease, I sat down at my computer to get some information about it.  First stop, the American Lung Association.  The following information is taken from the pneumonia fact sheet http://www.lungusa.org/site/pp.asp?c=dvLUK9O0E&b=35692  and I have made a few notes in [brackets].

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* Pneumonia affects the lungs in two ways. Lobar pneumonia affects a lobe of the lungs, and bronchial pneumonia can affect patches throughout both lungs.

 

* The major types of pneumonia are bacterial pneumonia, viral pneumonia, and mycoplasma pneumonia. Pneumonia also may be caused by the inhalation of food, liquid, gases or dust, and by fungi. Certain diseases, such as tuberculosis, can cause pneumonia.

 

[I asked my primary doctor about this a few days after I developed a wheeze that started suddenly and became a cough and infection.  He said, no way, that if you get aspiration pneumonia, you will be seeking help the same day, maybe even at the emergency room with acute respiratory distress.  Many people inhale small amounts of saliva while sleeping but only about 4% ever inhale enough foreign matter to cause aspiration pneumonia.  We laryngectomees are probably safer than most unless we have a fistula that opens into the trachea.  The TEP puncture with a prosthesis inserted should not have leakage but, occasionally, when we are eating or drinking we know immediately that a small amount came through and there is an automatic cough that doesn’t let it go further.  If you have such a leak, stop, cough, clean your prosthesis, irrigate and then check to see if the leak has stopped.  If not you may need a prosthesis change.]

 

* People considered at high risk for pneumonia include the elderly, the very young, and those with underlying health problems, such as chronic obstructive pulmonary disease (COPD), diabetes mellitus, congestive heart failure and sickle cell anemia. Patients with diseases that impair the immune system, such as AIDS, or patients with other chronic illnesses, such as asthma, or those undergoing cancer therapy or organ transplantation, are particularly vulnerable.

 

* Approximately 50 percent of pneumonia cases are believed to be caused by viruses and tend to result in less severe illness than bacterial-caused pneumonia. The symptoms of viral pneumonia are similar to influenza symptoms, including fever, dry cough, headache, muscle pain, weakness, high fever, and increasing breathlessness. Viral pneumonia is less common in normal adults with a fully functioning immune system; however, most pneumonia in the very young is caused by viral infection, including respiratory syncytial virus (RSV).

 

* Streptococcus pneumoniae is the most common cause of bacterial pneumonia. The bacteria can multiply and cause serious damage in healthy individuals, especially when the body's defenses are weakened. Pneumococcus can cause serious infections of the lungs (pneumonia), the bloodstream (bacteremia), the covering of the brain (meningitis), and other parts of the body. Pneumococcal pneumonia accounts for 25 to 35 percent of all community-acquired pneumonia and an estimated 40,000 deaths yearly. The onset of bacterial pneumonia can vary from gradual to sudden. In most severe cases, the patient may experience shaking/chills, chattering teeth, severe chest pains, sweats, cough that produces rust colored or greenish mucus, increased breathing and pulse rate, and bluish colored lips or nails due to lack of oxygen.

 

* Mycoplasmas are the smallest free-living agents of disease in man, with characteristics of both bacteria and viruses. The agents generally cause a mild and widespread pneumonia. The most prominent symptom of mycoplasma pneumonia is a cough that tends to come in violent attacks, but produces only sparse whitish mucus. Mycoplasma are responsible for approximately 20 percent of all cases of pneumonia.

 

* Early treatment with antibiotics can cure bacterial pneumonia and speed recovery from mycoplasma pneumonia. There are generally no effective treatments for most types of viral pneumonia, which usually heal on their own.

 

* Pneumococcal vaccination is effective in preventing invasion of pneumococcal infections. People over age 65 and those in high-risk groups are advised to receive the pneumonia vaccine. The vaccine is effective in approximately 80 percent of healthy young adults; however, it may be less effective in people in high risk groups. In addition, influenza vaccination is recommended since pneumonia often occurs as a complication of the flu. The pneumonia vaccine is generally given once, although revaccination should also be considered for high-risk adults who received their first shot six years ago or more, and for those who are shown to have rapid decline in pneumococcal antibody levels.

 

[It is a good idea for us to get a pneumonia shot because it protects against the most common kinds of pneumonia and the most common type of community-acquired pneumonia  Doesn’t mean you will never get another kind of pneumonia but it is a step in the right direction.  If it has been a few years since you had your pneumonia shot, talk to your doctor to see if s/he recommends a follow up.  Do get a flu shot every year]

(continued on back page)

 

IF YOU HAVE SYMPTOMS OF PNEUMONIA

Call your doctor immediately. Even with the many effective antibiotics, early diagnosis and treatment are important. Follow your doctor's advice. In serious cases, your doctor may advise a hospital stay. Or recovery at home may be possible.

 

Continue to take the medicine your doctor prescribes until told you may stop. This will help prevent recurrence of pneumonia and relapse. Even though pneumonia can be treated, it is an extremely serious illness so don't wait, get treatment early.

For more information call the American Lung Association at 1-800-LUNG-USA (1-800-586-4872), or visit the web site at http://www.lungusa.org.

 

 

NO HEAD & NECK SUPPORT MEETINGS AT KIRKLIN UNTIL FURTHER NOTICE

 

HeadLines Newsletter:

B’ham:  Pat Sanders,   205-980-8416; pat@choralmusic.com

                                                                                                                                                           

Kirklin Clinic Otolaryngology :        205-801-8456 FAX

Glenn E. Peters, M.D.       Glenn.Peters@ccc.uab.edu

William Carroll, M.D.           william.carroll@ccc.uab.edu

Nancy Lewis McColloch, Speech Pathologist ;  205-801-8460;  nlewis@uabmc.edu

 

For cancer information call 800.ACS.2345 or visit our Web site at www.cancer.org

American Cancer Society in Birmingham:   nprice@cancer.org

                                   

WEBWHISPERS - INTERNET SUPPORT GROUP FOR LARYNGECTOMEES  http://webwhispers.org  is a site with helpful information on what to do before and after a laryngectomy. It includes educational sections on larynx cancer as well as a complete Library of Information, lists of Suppliers, a monthly newsletter, and Humor.  Laryngectomees, caregivers, and professionals can meet on two different e-mail lists to exchange messages, ideas and support   In addition, there is a forum with message boards for social interaction.  This is the largest internet support group for laryngectomees and is a member club of the IAL.

 

The Official site of the International Association of Laryngectomees

http://www.larynxlink.com  has all of the current information on the IAL, plus many newsletters from all over the US (including HeadLines for the last two years).  Information is always available for the IAL Annual Meeting and Voice Institute held once a year.