Carla's Story: Laryngeal Cancer

Recorded December 18, 2001

Listen With 14 minutes, 59 seconds.

Username: clynch

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Hello. My name is Carla. I'm a 36-year-old female, who earlier this year was diagnosed with squamous cell carcinoma of the larynx. My voice sounds different because I am speaking without vocal cords. I live in a small town of 6,000 in northeast Texas. I graduated high school there, and after attending college and earning my Bachelor's degree in accounting, I returned to my hometown to live. I am married to a wonderful man who has been there for me every step of the way. We have been married for six years. My husband, Matt, has a daughter that lives with her mother.

Chronic Hoarseness Leads to Diagnosis

My story starts back in 1997, when I went to see my general practitioner because I had been so hoarse for several weeks. My throat was not sore and I didn't have any other symptoms. That started a four-year-long story of seeing ENT's [Ear, Nose and Throat Specialists], allergy doctors, neurologists and speech therapists. I also had surgery three times to remove growths that were on my vocal cords. My only symptom throughout everything was chronic hoarseness.

Then in April of 2001, I went to Dallas to see another ENT who specialized in the vocal cords. He used a laryngoscope and looked down my throat. His laryngoscope had a camera attached to it and he recorded what he saw and then showed me the tape. After seeing the growth, we decided that another surgery was necessary. I had another microlaryngoscopy to remove the growth on my vocal cord. It was an outpatient procedure and I returned to work on the following Monday.

The next day, on Tuesday, May 8, 2001, my doctor called me at work and told me that the pathology report came back and said that I had invasive cancer of the vocal cords. Needless to say, I was shocked and my doctor was a bit surprised also, because I have never smoked nor consumed alcohol with any regularity. The average person who gets squamous cell carcinoma of the larynx is typically male, age 65, who has a history of smoking and/or drinking.

I called my husband at work and told him the news and also told him that I was going to go home for the rest of the day. I drove home in a daze. Shortly after I got home, my husband arrived. He too had left work. He could tell that I was on the verge of breaking down, so he gave me a big hug, told me that he loved me no matter what, and said that together we would get through this. His positive attitude gave me strength. He asked me what I wanted to do for the rest of the day, because he said we were not going to sit there and dwell on it. He had recently joined a co-ed softball team and suggested that we go to the batting cages. I agreed. I decided that I was going to take my fears and overflowing emotions out on softballs. Well, I got in the batting cage and hit about 80 softballs as hard as I could. I felt much better being able to release my emotions in a positive way. It was the start of my decision to fight this and to keep a positive mental attitude. Instead of asking, why me; I asked myself, now that this has happened to me, what am I going to do about it? It's amazing how powerful you feel once you've decided not to be a victim and to choose to live life proactively.

Surgery: Facing it Positive and Prepared

Three weeks later, on May 25, 2001, I went to the hospital in Dallas, Texas, to have what was originally scheduled to be a partial laryngectomy, which is where they remove only one vocal cord. It turned out to be worse than the doctor expected, and he had to do a complete laryngectomy. That means that he removed both of my vocal cords completely, separating my trachea from my throat by creating a tracheal stoma. He also dissected 39 lymph nodes on the left side of my neck to check for cancer.

I was in the hospital for a week. I had done some research and went to the hospital prepared. I took a Magna Doodle to write on because I could not talk. A great friend of ours arranged for me to have a laptop computer to use while I was in the hospital. That meant that I could send and receive emails. That was very encouraging and helped me not to feel so isolated since I could not speak. My husband, who always makes me laugh, had me laughing just a few days after surgery. He quickly gave me the new nickname, Muttley. That's like Muttley, the dog who sniggered on the Wacky Racers cartoon, because of the way I sound when I laugh. And I must admit, I do sound like Muttley when I laugh. [laughs] My husband and I worked out a way to communicate on the telephone. One beep was yes and two beeps meant no. That and text messaging on my cell phone helped me to keep in touch also.

One afternoon while I was alone in my hospital room, my telephone rang. I hesitated, but answered it. On the other end of the phone was a friend of my husband's who had had her vocal cords removed 25 years earlier. She knew our code. She spoke to me using esophageal speech, and we had a nice conversation with me using my code. When I hung up the phone, tears of joy filled my eyes because I knew I would be able to speak again. This was a great lift and it helped to reinforce my positive mental attitude.

However, the greatest news came on my stepdaughter's birthday. My doctor visited me and told me that the pathology report showed no positive margins and no signs of cancer in my lymph nodes. That meant that he had got all of the cancer and that I would not need radiation or chemotherapy. Although I still faced lots of doctors' appointments over the next several years, I was elated! After he left, I immediately got on the computer to send an email to all of my family and friends. I remember starting that e-mail with a line of the song, "I'm the happiest girl in the whole U.S.A."

Two days later I was released from the hospital. My husband and I drove home from Dallas on Saturday afternoon. I napped along the way, but when we exited off of the interstate, I woke up. I thought I had seen a yellow sign that had my name on it, but I didn't say or write a note to my husband to tell him until I saw the next sign, and I pointed it out to him. On the last few miles of our trip home, there were signs and balloons--there were signs and balloons that said, Welcome home, Carla and We love you, Carla. The signs appeared all along the roadway, and the final sign was in our front yard. My cousin, that two years earlier had been in the hospital in Dallas for 52 days, had made the signs. She had returned the welcome home that I had given her when she was released from the hospital. I was very touched.

Choosing to Live Life Proactively

By the time we got home it was dinnertime. My husband asked, "What do you want to eat?" He was a bit surprised when I said to call everyone and tell them to meet us for dinner at a small Italian restaurant in the city where I work. So, on the day that I got home from the hospital, I had dinner out with approximately twenty family and friends. I haven't slowed down since. The next weekend we kept our plans to go to Six Flags with some friends. I didn't ride anything, but went and enjoyed the shows and the company of friends.

Exactly one month to the day after having my surgery, I returned to work. A week earlier I had seen my doctor for a follow-up visit and also saw a speech pathologist to be fitted with a tracheo-esophageal prosthesis. The prosthesis is a silicone-type device with a one-way valve. It is placed in a puncture that my doctor created when he did my surgery. The puncture is in the wall of the back of my trachea and joins the front of my esophagus. The one-way valve prevents liquid and food from leaking down into my lungs. When I cover my stoma with my thumb and force air through the prosthesis, the one-way valve opens and allows air to enter my esophagus and exit through my mouth. That is how I am able to speak without vocal cords.

On the same day that I returned to work, I had my first speech therapy session to help me learn to speak with my prosthesis. During that first session, my speech pathologist and I had a nice conversation. At the end of the hour she told me that I didn't need to come back for therapy because I was speaking just fine. I was able to carry on a conversation with her and she was able to understand everything that I said. Within a week my husband jokingly told me to shut up, something I hadn't heard him say in more than four years. We laughed, and I told him I was making up for lost time.

I believe that attitude plays a huge part in recovering from cancer. If we work to find some good in the bad things that happen to us, then we have something positive to focus on. That can make a big difference in the way that we look at the challenges that we face. Focusing on the positive helps us to survive the tough stuff, and we usually discover that we are a lot stronger and more able to handle it than we ever imagined we were.

A friend of mine who was visiting from Washington D.C. said something to me that stuck with me. She told me that "We would rather have you with a hole in your neck than a hole in the ground with you in it." And that is a unique but great way of expressing the fact that I'm still alive, which is much better than the alternative.

Adjustments and Discoveries After a Laryngectomy

I'm still adjusting to the changes in my anatomy. The first time I sneezed after my surgery was a bit confusing. Like we've all been trained to do when I sneezed, I covered my nose. Little good that did, since now when I sneeze it comes out of my stoma. It only took once for me to realize that I needed to cover my stoma or I would be blowing mucus all over everything.

Most people don't realize that I now breathe through my stoma. That means that I can't smell. Trust me, it does have its advantages, especially when you pass a dead skunk on the road. My olfactory glands still work, it's just that the air doesn't pass through my nose to come in contact with the glands that allow you to smell. So my nose is now just a decoration on my face. Recently I discovered that when it was cold outside my breath shows up when it leaves my stoma, where most people's breath shows up coming out of their mouths. That was a little startling to me and my husband, and we got a good laugh out of it. Laughter is truly the best medicine.

I'll give you a few other interesting changes that I have encountered. One is that I cannot snore. I didn't snore before, but I definitely can't snore now. I can't whistle because there is no air going through there, or gargle. I can't slurp and I can't sniff. I cannot ever get choked. My esophagus is totally separated from my trachea, so nothing can go down the wrong way, and I can kiss my husband forever without having to come up for air. I'm sure that that tickles his neck when we kiss because he can feel me exhaling on his neck.

Now that I'm a total neck breather, I have concerns about making EMS [Emergency Medical Services] and emergency room staff aware of the differences in the anatomy of a laryngectomee. If I need oxygen or CPR, it must be administered to my stoma, not to my nose and mouth. I would hate to think that after surviving cancer, a minor mishap that requires that I receive oxygen could cause my death, because it must be administered to my stoma. There are only approximately 50,000 laryngectomees in the entire United States. I would venture to say that there are several doctors and nurses that have never encountered a laryngectomy patient, and while they were told what to do in school, like everything, if you don't use it you lose it. Making the public more aware of laryngectomees is something I hope to do in the coming year, and this interview is a great way for me to get started.

Cancer is never something that you want, but I can say the whole experience has opened up a whole new world for me. I have made a lot of new friends. I discovered that I can give other people hope and encouragement by having a positive attitude. I have learned that I can face this terrifying disease with dignity and courage and that I am a better person because of it. I don't take things for granted any more, and I have a new appreciation for life. I am grateful for advances in medicine that not only allow me to be a cancer survivor, but give me the ability to speak without vocal cords.

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