Carla Lynch's Story
I live in a small town of 6,000 in northeast Texas. I graduated from high school here 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.
My story starts back in 1997 when I went to my general practitioner because I had been hoarse for several weeks. My throat wasn't sore and I didn't have any other symptoms. That started a four-year long string of seeing three ENT's, an allergy doctor, two neurologists, a speech therapist and having surgery three times to remove growths on my vocal cords. My only symptom 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 the tape to me following the examination. 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." 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 what I wanted to do for the rest of the day, "cause we are not going to sit here 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 over flowing emotions out on the softballs. 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 keep a positive mental attitude. Instead of asking why me, I ask myself, "Now that this has happened to me, what am I going to do about it?"
Three weeks later, on May 25, 2001, I went to the hospital in Dallas to have what was originally scheduled to be a partial laryngectomy. 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 area by creating a tracheostoma. He also dissected 39 lymph nodes on the left side of my neck to look for the cancer.
I was in the hospital for a week. I had done some research and went to the hospital prepared. I even took a Magna-Doodle to write on because I could not talk. A great friend of ours also arranged for me to have a laptop computer to use while I was in the hospital. That meant that I could send and receive e-mail. The ability to email was very encouraging, and it helped me to not 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 a new nickname, Muttley. That's like Muttley, the dog who snickered on the Wacky Racers cartoon. I must admit that I do sound like Muttley when I laugh.
My husband and I had 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 phone rang. I hesitated, but answered it. On the other end of the phone was a friend of my husband's who 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 . . . using our code. When I hung up the phone, tears of joy filled my eyes because I knew that I would be able to speak again. That was a great lift and 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 reports showed no positive margins and no signs of cancer in my lymph nodes. That meant that he had gotten all of the cancer, and that I would not need radiation nor chemotherapy. Although I still face lots of doctors' appointments over the next several years, I was elated. After he left, I immediately got on the computer to send an e-mail to all of my family and friends. I remember starting that e-mail with a line of a 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 from the Interstate, I woke up. I thought I had seen a yellow sign that had my name on it. I didn't "say," or write anything to my husband until I saw the next sign. I pointed it out to my husband. On the last few miles of our trip home, 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, who 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 to her when she was released from the hospital! I was touched.
By the time we got home, it was dinnertime. My husband asked what I wanted to eat. He was a little surprised when I said to call everyone and have them meet us for dinner at a small Italian restaurant in the city where I work. So on the day I got out of the hospital, I had dinner out with approximately 20 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. The week earlier, I had seen my doctor for a follow-up visit and also saw a speech pathologist to be fitted with a tracheoesophageal prosthesis. The prosthesis is a silicone tube type device with a one-way valve. It is placed in a puncture, that my doctor created when he did the 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 and that 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 that I hadn't heard him say to me in more than four years. We laughed, and I told him that 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 focus can make a big difference in the way we look at the challenges we face. Staying focused on the positive helps us to survive the really tough stuff. We usually discover that we are a lot stronger and more able to handle it, than we ever imagined we were.
A friend our mine, who was visiting from Washington, D.C., said something to me that has stuck with me. She told me that "We would rather have you with a hole in your neck, that a whole in the ground with you in it." That is a unique, but great way of expressing the fact that I'm still alive . . . which is much better than the alternative.
I'm still adjusting to the changes in my anatomy. The first time I sneezed, after surgery, was a bit confusing. Like we all have 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 that does have its advantages, like when you pass a dead skunk on the road. My olfactory glands still work, it's just that air doesn't pass through my nose to come in contact with the glands that allow you to smell. My nose is now just a decoration on my face. Recently I discovered that when it is cold outside, my breath shows up when it leaves my stoma. That was a little startling to my husband and I, but we got a good laugh out of it. Laughter is truly the best medicine. I'll give you a few other interesting changes. One is that I cannot snore. I didn't snore before, but I definitely can't snore now. I also can't whistle (no air) or gargle. I can't slurp, nor can I sniff. I cannot ever get choked by food while eating, since my esophagus is totally separated from my trachea, and nothing can go down the "wrong way." I can kiss my husband forever without having to "come up" for air. I'm sure that it tickles his neck when we kiss, 'cause he feels me exhaling on his neck.
Now that I am a total neck breather, I have concerns about making EMS 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 of us in the entire United States. I would venture to say that there are several doctors and nurses that have never encountered a laryngectomee. And while they were taught what to do in school, like everything else, if you don't use it, you lose it. Making the public more aware of laryngectomee's is something that I hope to do in the coming year.
On February 9, 2002, while volunteering as a laryngectomy patient at a conference held at MD Anderson Cancer Center in Houston, I was given two very special gifts. The conference was mainly for SLPs and students studying to become SLP's. In one of the workshops a doctor from the Netherlands was demonstrating a technique that allowed laryngectomees to regain some of their ability to smell. I picked up on the technique right away and I am truly amazed at the things that I can smell again. Laryngectomees loose their sense of smell because air does not enter through the nose and travel past the olfactory glands. The ability to smell is still there, but the stimulus does not reach the proper area. To be able to "smell the roses" again was incredible.
However, the most precious gift that I received at the conference was being fitted with a hand-free speaking valve. Student SLP's fitted me with the valve, with instruction from the workshop coordinator. I was ecstatic to be able to speak without occluding my stoma with my thumb. But, the reaction of the student SLP's was priceless and something I will never forget. They were so excited when I uttered my first words hands-free. There was an instant bond created because they had witnessed my first words hands-free. For the previous nine months I had been speaking fine, but always needed a free hand to occlude my stoma in order to speak. This was a dream come true!
Cancer is never something that you want, but I can say that the experience has opened up a whole new world to me. I've made a lot of new friends. I have discovered that by having a positive attitude, I can give other people hope and encouragement. I have learned that I can face a terrifying disease with dignity and courage, and I am a better person because of it. I don't take things for granted anymore, and I have a new appreciation for life. I am grateful for the advances in medicine that not only allowed me to be a cancer survivor, but also gave me the ability to speak without vocal cords!