(Note: In 2020, the writer was diagnosed with stage 4 throat cancer in June, had two surgeries - on July 28 and August 3 - to remove the tumor, and completed radiation and chemotherapy on October 23. Below is another excerpt of her experience.)
Once I learned to talk, I never shut up nor did I give the process a second thought. If I had something to say, I opened my mouth and shared - whether asked or not.
This was my habit during my early years and while transitioning from teen to young adult, I learned to think before I speak. (I’m sure my parents had told me, but I was either hard-headed or a slow learner.)
So, over the next 40 years, I got better and used my voice creatively to recite poems, emcee programs, act in community theater, teach PR classes and speak publicly. I loved it and sought opportunities to do any of it as often as possible.
Plus, I made a career as a spokesperson for the U.S. Postal Service, LAX and L.A. City Public Works. They were great jobs that afforded me travel around the world and let me represent honorable public agencies. Most of all, I could talk to my heart’s content.
Then, at 64, I couldn’t do it anymore because I no longer had a voice box. Throat cancer turned me into a laryngectomee - a word I never heard of until it applied to me. Once it sunk into my head that I couldn’t talk the way I always had, I opened my mouth to scream - but no sound came out! I was shocked for at least 10 seconds, then I cried and then I got angry and looked for somebody to blame for my condition!
After a while, I realized I was probably the blame for my condition. After all, I selected the lifestyle habits (such as smoking for years and years) that led to cancer that led to a total laryngectomy. What an eye- opening, sobering thought that I definitely wasn’t ready to even acknowledge (lol). So, in an act of self-denial, I decided to concentrate on my alternative speech options. (After all, I could always take the blame at a later date - lol.)
The Provox electrolarynx was the first option I tried. The state of California provides the device for free and a Keck USC speech therapist coordinated the paperwork and arranged for me to receive it. The eletrolarynx arrived while I was still in the hospital and the therapist showed me videos and gave detailed instructions on using it.
It looked like the ideal solution to my “lack of a voice” dilemma. The people on the video just placed the device under their chin and started talking. I admit that the sound was a bit robotic, but the “voice” was understandable, so I figured I could do it easy enough. Once again, I was mistaken.
After I was released from the hospital, I tried to find my “sweet spot” under my chin so I could voice words and sentences, but I didn’t have any luck whatsoever. I knew it could be done because I even saw people use it in real life, but I couldn’t find a spot under my chin that would let me talk! Figuring that my technique was faulty, I eagerly looked forward to my first meeting with my speech therapist, who I believed would show me the error of my ways.
When the meeting time arrived, I was so excited and totally confident that I would leave the therapist’s office talking and surprise, surprise, I did leave saying a word or two, but not by placing the electrolarynx under my chin. After about 20-30 minutes of trying to help me locate my “sweet spot,” the therapist showed me another way to use the device by connecting a tube and inserting it in my mouth to talk, which worked for me.
The electrolarynx comes with two plastic tubes plus a charger. One tube is clear and more flexible and the other one is solid and sturdier. The solid one worked best for me, so that what I decided to learn to use. The interesting thing for me is that I thought it was always clear what I was saying when I talked with the electrolarynx. However, after getting repeated “What did you say?” and “Huh? I didn’t get that,” I kept paper and pen nearby to the written translation of my statements.
Still, I kept trying to enunciate better and fortunately, the speech therapist gave me so many valuable exercises to improve my speech with the electrolarynx. So, I used the device for about three month and during that time, I encountered two more people placing it under their chin and they sounded so clear and understandable. After those interactions, I would always be determined to learn to talk with the electrolarynx under my chin and I would spend lots of time practicing. Finally, I’d give up, attach the tube to the device and talk in that manner with my pen and paper nearby.
I must say that people around me regularly, like my family and friends, understood me pretty well with the electrolarynx. But others meeting me for the first time rarely knew what I said. I continued to use the electrolarynx anyway and if I planned to be around new people, I made sure I had a family member with me to interpret or had my pen and paper with me.
After nearly three months using the electrolarynx, I had a voice prosthesis surgically implanted. Of course, I was extremely excited and figured I would immediately talk “a mile a minute.” Well, I didn’t achieve that milestone, but I was able to say “ahhh” for 11 seconds and learned to voice 1-3 words on the first day after my operation. I’ve since learned that my experience was different from others and I was blessed to learn to voice so soon. However, I’ve met people that took longer to learn to voice, but now they are talking extremely well.
The point is not to compare my progress with anyone else. We are all different so I must move forward at a pace that works for me. I was having a really hard time accepting that theory until I started asking questions of my Laryngectomee Support Group. The members, who have gone through what I’m going through, enlightened me about my fears and expectations and let me know that I’m not the only laryngectomee to experience the feelings - whether good, bad, scary or indifferent - that I have.
So, now I’m entering the third month of talking with a prosthesis. I started with a HME and Lary tube secured with a neckband, then moved to an adhesive plate with a Lary tube (which is really nice because the plate is clear, thin plastic unlike the neckband, which is made of cloth). By depressing the HME, I’ve learned to voice sentences. It’s possible by coordinating my breathing, talking from diaphragm and the depression of the HME.
I’m working on incorporating inflections, facial expressions and body language into my communication with others. I’m also working on my breathing because once I’m able to string together longer sentences and learn to manage my breathing, I’ll be able to move to a hands free HME. That means no more depressing the HME to speak! But, until I reach that point, I’ll be grateful for how far I have come and thankful for the support of my family, my friends, my Laryngectomee group members and the medical professionals at USC Keck.