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Diagnosed with Oral Cancer

My Own Personal Story

By

Updated June 08, 2014

Diagnosed with Oral Cancer
Marlene
Throat cancer is a horrible disease, and one that most smokers fear. I cannot imagine losing my voice, let alone going on to "speak" before groups of children, using my disease as a powerful example to help them avoid smoking. This is just what Marlene does today though, every chance she gets. She is a remarkable woman, and is nothing short of inspirational. I hope that her story touches you as it has me.

From Marlene:

I am writing this story about my life as a smoker in hopes it will not only entertain whoever should read it, but maybe prevent someone from using tobacco or entice someone to quit using tobacco.

How I Started Smoking

I tried my first cigarette at the age of 11. The preacher's son gave it to me behind the church, where a lot of us kids went after church services on Sunday morning. I was a bashful and timid girl, and just wanted to be included in the group. I did not actually start smoking then, full time that is. I would sneak one here and there with the other kids, but by the time I was 12, I was hooked.

Now that I've analyzed this I realize tobacco turned me into a sneak, a liar, and a thief, right off the bat. I'd sneak to catch a "drag" here and there, then I graduated to stealing cigarettes from anyone who happened to leave a pack around. When asked about it, I lied and said, "No, I haven't been smoking" and "No, I didn't take any cigarettes." I started stealing money to support my habit. I did it so I could hang out with the kids and be part of their group.

Permission to Smoke

I moved in with my dad, step mom, and step sister when I was 12. My step sister, who was 10, took me to the backyard where a old trailer was sitting. She crawled under it and came out with her cigarette stash, a "stolen pack of daddy's cigarettes." That's when I really started to smoke. Stealing from my dad was easy. He never seemed to miss them, until one day when he caught me. I knew I was going to get the beating of my life; my dad had a bad temper when pushed to his wits end.

He ordered me into the house, where he sat me down at the dining room table. He made me roll 20 cigarettes from the old roll; your own "strong, stinking tobacco" with the papers, remember those? Does anyone still use that stuff? When I finished rolling them, he made me sit there and smoke every one of them. No supper, nothing to drink. I had to just sit there and smoke. Well, even a surprise to me today, I did it. It took me a few hours, but I did it. You see, I inherited his stubborn streak.

When I finished the last one, he said, "Well, you proved you can handle it, so you have my permission to smoke, but if I ever catch your sister smoking, I'll give you the beating that you thought you were going to get today." I got up from the table, feeling rather sick, went into the bedroom and told my sister, "If daddy ever catches you smoking, I'll beat you to death!"

Turmoil and Early Sickness

I have since thought of that time and truly wish he would have give me the beating of my life instead of handling it like he did.

So,with my dad's permission to smoke, I smoked all the time and everywhere, except grandma's house. Forget the beating, she would have killed me.

Over the years, cigarettes caused a lot of turmoil in my life. Smoking put me in the hospital 3 times that I can remember. I had severe bronchitis and breathing problems. I was put on breathing machines and breathing medications several times. As soon as I would get to where I could breathe freely again, I would light up. Is that insane or what?

This went on for 39 years, at which time I was smoking 2-plus packs per day and still lying about it. I lied to the doctor that diagnosed me with cancer. "No doctor, I only smoke less than a pack a day." Lies, Lies, and more lies for 39 miserable years.

Bad News

In 1996, I developed a sore throat that would not go away. I tried everything over the counter -- cold medicines, lozenges, throat sprays. Nothing worked.

I went to the doctor, who put me on one antibiotic after the other from October until December. Still, the sore throat wouldn't go away. Finally, he sent me to an oncological ear, nose and throat specialist, who ran a scope down my nose and throat. He saw something and suggested I go to the hospital and have a biopsy.

I had the biopsy on Thursday. After it was over, the doctor didn't stay to talk to me. Instead, he left instructions for me to go home, rest my voice, not to talk to anyone, and left a prescription for a rather strong pain medication. He told the nurse to instruct me to be in his office the next day at 5 p.m. I knew he did not take appointments that late in the day. I also knew you do not get pain medication like that, with refills unless something is really wrong. Also, I wondered, "Why can't I use my voice?" I knew the news was going to be bad.

I went home and waited for 5 p.m. Friday to come. I didn't talk to anyone. I just waited, and it seemed like a long time. When the time finally arrived for me to leave, I wanted to run in the opposite direction. I dreaded that trip to his office, but I went and he said right out,

  • "You have cancer, and it's the worst kind; it spreads rapidly. I suggest we operate as soon as possible. I want to perform a complete laryngectomy on you. There's good news and bad news; the good is I think I can get it all. The bad... you will never talk again."

I told him I'd get back with him on what I wanted to do.

It's My Decision

I left his office in a trance. I drove home in a trance, almost wrecking the car a couple of times. My only thought was, "No, no, no, way are they going to cut my throat open, and no way are they going to turn me into a freak."

I got home and called my children and told them what the doctor had said. I also told them I'd decided not to have the surgery. They naturally had a fit and said, "Yes, you are!" I informed them it was my life and my decision.

My oldest son and his wife drove 500 miles to my home to talk me into having the surgery. My daughter-in-law started crying and said,

  • "Mom, I can't believe you don't want to see your future grandchildren."

Well, I think that's what did it, because after I thought about it, I couldn't sleep that night. I realized how selfish I was. I knew I was not ready to leave this world without seeing my grand babies. My greatest wish was to be a grandma.

The Surgery

I decided to go back and talk to the doctor. The kids went with me, and on December 24, 1996 (Christmas Eve), I had a complete laryngectomy. Nice Christmas present wasn't it?

When I woke up in intensive care, the first thing I recall is seeing my youngest son holding my hand with his head resting on the bed rail, crying so hard he was sobbing. I naturally opened my mouth to console him but nothing came out. I felt so helpless. I wanted so badly to assure him everything was going to be okay, and I couldn't say a word. My voice was gone. Forever.

That must have been a horrible sight, seeing your mother lying there with her throat cut nearly ear to ear.

All because of tobacco addiction.

Life at Home

After I got out of the hospital, I had home nurses and a speech therapist come to my home to help me. I didn't know anything about the laryngectomy I had just had or about being a laryngectomee. This was all new to me. The first thing was to learn how to care for myself. There was the feeding tube, hooked up through my nose, and learning to clean the trachea site (hole in my neck). One day I was fine, the next I'd cry all day. I was on an emotional roller coaster.

Learning to Talk Again

I had a speech therapist who came to my home to teach me how to talk with an instrument called an electro-larynx. She took it out of the box, put the battery in it, and showed me how to use it. She told me to sit in front of a mirror and practice until I could be understood. As soon as she left, I took the battery out, packed it back in the box and said to myself,

  • "I'm not about to use that silly-sounding thing to talk. I wouldn't be caught dead talking with that thing."

Still suffering in silence, all because of tobacco addiction.

We set up a tapping signal on the telephone so I could answer questions and call for help if I needed to. One tap was "no," two taps meant "yes," etc. My daughter and granddaughter called me from out of state, and they would ask questions and talk and I would tap. When we got ready to hang up, I started crying. I tapped 1-2-3 and my daughter said "I love you too, Mom." I'll never forget how devastated I felt that I couldn't even tell my kids I love them. All because of tobacco addiction.

After I got off the phone, I opened the box, put the battery back in and started to practice. As soon as I thought my kids would be able to understand me, I called them all and told them I loved them, and they all understood me. To this day, I hate using talking with that device. I'd much rather have my old voice back, but it is gone forever...all because of tobacco addiction.

Radiation Treatments

Then came 33 radiation treatments--as if the cut throat, feeding tubes, medications, and silly-sounding speaking devices weren't enough. Getting through all the radiation treatments was a real test of strength for me. More than once I sat in my car after a treatment and cried before I could put the key in the ignition and start the car (I prayed a lot too). But my children constantly reassured me that I could make it. How I did, I don't know, but I did.

And Life Goes On

I have adjusted for the most part to my new way of life. Every day I think about it; it never leaves your mind. I am so lucky because I'm alive. A lot of people -- approximately 50 an hour -- are dying because of tobacco addiction. Speaking of being lucky, in 1999, we were invited by the American Lung Association to represent them at the Second Wind Lung Transplant Convention in St. Louis. I talked to people who were in wheelchairs with oxygen tanks strapped to their backs and tubes running up their noses. They were some of the nicest people I've ever met. I talked at length about their problems, my problems, etc.

I learned that most of them had smoked, and most of them were on a waiting list for a lung transplant. Well I'm ashamed to admit that up until this point I had felt sorry for myself. I came home from that convention a much more thankful person and life means so much more to me now. I'm alive, and my name is not on a waiting list for life!

I am sure my story is pretty close to, if not exactly like, many others before and after me. That's why it's important that we educate as many children as we can about the dangers and terrible consequences of tobacco.

If you are a child and you are reading my story, please stop and really think about what you are doing to harm yourself before you use a tobacco product, because I really do care about you.

I always wanted to be the one to give thanks where it's due after a performance or as part of a book, in this case a document. This is my chance.

I want to send my deepest gratitude and thanks to every one of my children. Without them, I would not be here now to share this story with you. Without them, my life would not be worth living. They inspire me and for that I am sincerely grateful.

A special thanks to Mr. Robert Mehrman who helped me a great deal with information for my program. Robert, you are the best.

Thank you everyone for taking the time to read my story.

Update from Marlene, December, 2006:

I've been in and out of the hospitals since my first surgery with one surgery after the other. I had 3 big lumps appear inside my mouth and a growth I thought was a wart on my nose. The doctor wanted to get the lumps out of my mouth and I asked him if while he did that, could he snip that thing off my nose. The lab results showed the lumps in my mouth were nothing, but the wart turned out to be cancer.

In 2005, I lost my job of 15 years due to downsizing, so my sons moved me to Kansas to live with them and I filed for disability. Soon after I moved, I started having trouble swallowing. Then it turned to painful inability to swallow. Antibiotic time again, but they did not help. The doctors checked and checked, but could not find anything; the CT scan came up clean.

The squeaky wheel always gets the oil so I kept squeaking. I got aggravated and changed doctors after I joined Victory In The Valley in Wichita, Kansas. Executive director, Diane Thomi, was an oncology nurse for over 40 years and she suggested someone I should see. I changed doctors under her recommendation. The new doctor sent me for a PET scan and found cancer at the base of my tongue. He confirmed it with a biopsy. I started treatments of two pin pointed radiation treatments per day along with two different kinds of chemotherapy. I was on this regimen for about 3 months, and ended up in the hospital completely dehydrated for a week. I was very sick.

I am still under care for this cancer. I just had another PET scan and a CT scan, one of which came back bad, so this month the doctor is doing another biopsy that will tell us once for all if the treatments got it all. If not, they will either cut my tongue open and install radiation seeds directly into my cancer, or I'll have to go to Kansas City to have my tongue removed.

I have been in the best of moods, and I actually feel good so I'm trying not to get my hopes up too much. But, I can't help feeling the cancer is gone.

I now have 4 grandsons, the sweetest little guys you have ever seen. I babysit and we have a great time. I love those guys with all of my heart.

Copyright 1999, Marlene All Rights Reserved

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