Internet Laryngectomee Support
Making the Best of Life
by Carla Lynch
My story starts back in 1997 when I went to see my general practitioner. I had been hoarse for several weeks. My throat was not sore and I didn't have any other symptoms. That started a four-year-long saga of seeing ENT's, allergy doctors, neurologists and speech therapists plus having three surgeries to remove growths on my vocal cords.
After four years of chronic hoarseness, I went to Dallas to see another ENT who specialized in the vocal cords. He used a laryngoscope and looked down my throat. After seeing another 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 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 cord. Needless to say, I was shocked and my doctor was also a bit surprised because I have never smoked nor abused alcohol. I was just 37 years old.
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 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 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, “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.
Three weeks later I went to the hospital in Dallas, Texas, 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. 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 e-mails and chat on the computer. That was very encouraging and helped me not to feel so isolated since I could not speak. My husband, Matt, 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. 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.
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 e-mail to all of my family and friends. I remember starting that e-mail with "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 another 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, who 14 years earlier had been in the hospital in Dallas for 52 days, had made them. She had returned the welcome home that I had given her when she was released from the hospital. I was very touched.
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 Over Texas 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. 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. 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. Another dear friend of my refers to the scar on my neck as my "lifeline," because I'm still alive.
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.
Carla and Matt live in Gladewater, Texas, and can be reached at: email@example.com
Texas Laryngectomee Association becomes Independent from Texas ACS
The Texas Laryngectomee Association annual meeting which concluded In October in Austin will apparently be the last sponsored by the Texas State unit of the American Cancer Society. According to New TLA Chairman John Ulrich, "The State Unit had a $2 million dollar budgetary shortfall for the year and things are not looking better. So, our being such a small subcommittee of the Patient Affairs committee we were on the 'chopping block.' We have been expecting this to happen for several years, but it was still a 'surprise' when it actually happened."
The TLA is looking into becoming a 501 (c) (3) tax-exempt organization so that it can engage in tax-deductible fundraising. A strong State association and vendor support should help in keeping the organization going, and local Texas ACS units are expected to continue to support their local laryngectomee clubs.
The separation of the two reminds some of the separation of the International Association of Laryngectomees from the American Cancer Society. One major difference is that the IAL/ACS split occurred more as a result from a policy shift away from direct patient support than for economic reasons.
Smoking and Polyps Linked
Smoking has now been linked to the development of colorectal polyps. And previous studies have shown that 75% of colon cancers begin as polyps. The finding of the link between smoking and polyps was reported at the October Annual Scientific Meeting of the American College of Gastroenterology. Standard medical advice has been to begin screenings of the colon and lower digestive tract beginning at age 50. However, the study suggests that smokers should be screened earlier.
Screening for polyps usually involves fecal blood tests and sigmoidoscopy done in the doctor's office. A more extensive examination, the colonoscopy, may be done in a hospital setting.
Colorectal cancer has been a recent focus of the American Cancer Society and featured in ads starring "Polyp Man." The topic of polyps and colon cancer was featured in this issue of the WWJ:
When All Else Fails, Duct It
If it were April you might think it was an April Fools' joke. This was the recent news that duct tape can remove warts. But the tip comes from no less prestigious a source than The Journal of the American Medical Association's The Archives of Pediatrics and Adolescent Medicine. It turns out that wearing a piece of duct tape over the wart until it disappears is even more effective than freezing the wart in the doctor's office. Still another use for duct tape!
Inserting the Prosthesis - The Gel Cap Method
When clinicians (ear, nose and throat specialist MDs and speech-language pathologists) insert the indwelling type of prosthesis many use the gel cap approach. Basically, it collapses the inner flange inside a gel cap. This eases the process of inserting the prosthesis into the puncture tract.
Many laryngectomees use the gel cap insertion kit to install the kind of prosthesis you change yourself. The kit is a prescription-only product, but vendors will sell and mail the product to laryngectomees who have been given a prescription by their clinician.
The series of photos below shows the process.
Once the prosthesis is inserted the gel cap is confirmed as having dissolved and the inner flange opened on the esophageal side. There are several ways this is done. Some drink water to help the gel cap dissolve more quickly. Some squirt water through the prosthesis with a flushing pipet or the pipet/syringe combination (see "Modified Syringe... http://www.webwhispers.org/pages/hints/tepspeech.htm). If water passes through it the gel cap has dissolved.
Another way to verify that the gel cap has dissolved and the flange is fully open is to rotate the inserter with the prosthesis still attached. It should rotate easily in the puncture tract if the gel cap has dissolved. If the safety strap twists, then it has not.
Some laryngectomees have sought to
install their own indwelling prostheses. But this is not recommended because
the indwelling is designed to be installed by an experienced clinician. With
the indwelling, the safety strap is meant to be cut off. And cutting off the
safety strap removes a safety feature demanding that there be no question at all
that the gel cap has dissolved and the interior flange opened fully in the
proper position. Otherwise, there is a danger of the indwelling prosthesis
dislodging and dropping into the trachea, or even that the interior puncture
could grow closed if the prosthesis flange opened within the tract instead of
the esophageal wall. The danger is significant enough that the manufacturer
recommends that an x-ray confirm that the interior flange is fully opened before
cutting the safety strap.
John & Carole Berger
Bonita Springs, FL
Connie Hudgeons - Caregiver
New Berlin, WI
Bishop Duncan Mbogo
Thika, Kenya, E. Africa
San Rafael, CA
Jacksonville Beach, FL
Claire Overmyer - SLP