Getting to Hands-Free Status
(Note: In 2020, the writer was diagnosed with stage 4 throat cancer in June, had two surgeries - in July and August - to remove the tumor, and completed radiation and chemotherapy in late October. Below is another excerpt of her experience.)
In April 2021, I embarked on a campaign to become proficient using the hands-free device and I still have yet to perfect it. Admittedly, it’s taking much longer than expected, yet (as a character says in the movie, “The Outlaw Josie Wells”) I shall endeavor to persevere.
All credit goes to my Dr. Brenda Villegas, my speech therapist, that I even reached the point of transitioning to hands-free. Her encouragement and confidence that I could use it persuaded me to give it the “good old college try.”
Another influencing factor was my desire to resume pre-laryngectomy activities like emceeing social programs, delivering poems and readings before audiences and interviewing people for the L.A. Sentinel, the weekly newspaper that I work for. As a “drama queen,” I fling my hands around when doing the aforementioned deeds and I believed that using the hands-free device would greatly enhance my actions in these areas.
Some may read this and say, “Gosh, she is really vain!” And to those people, I reply, “You are right and I’m working to change.” But until then, I’m striving to master my use of the hands-free device and I’m making progress – slow and incremental, but progress nevertheless.
Initially, my biggest challenge was learning to speak from my diaphragm and coordinating the sounds with my breathing. It sounds hard, but with practice, it can be achieved and soon becomes natural to you. Dr. Brenda gave me great exercises to practice, and my favorite consisted of speaking or producing the “A” sound or “O” sound for as long as I could.
At first, I could only do it for less than 5 seconds. But gradually, I could hold it for extended periods, like 18 seconds, then 27 seconds and even 36 seconds. The technique helped me to string together longer sentences. It took me about four months, but I became adept at conversation using the hands-free device.
As with anything, the more you talk with the hands-free device, the better you become. With that in mind, I urge anyone using it to seek out conversations with others and when no one is available, read aloud to yourself or sing in front of the mirror. Also, practicing in front of the mirror is a great technique to help match your facial expressions to your words. Pretty soon, you’ll become a master communicator!
Even though I’m making progress with hands-free, there are a few hurdles that continue to plague me. My biggest stumbling block has been obtaining a good seal of the adhesive base plate, which makes talking so much smoother and easier.
I use the Provox Life product line and when I apply their standard baseplate, it only sticks securely around my stoma for three hours at the most and then it begins to detach from my skin. I’ve tried using both Skin Prep and Skin Tac wipes before applying the baseplate, but it still only sticks for the same amount of time.
After explaining my dilemma to Dr. Villegas, she suggested that I try the Provox Life Stability Adhesive, which was an excellent recommendation because it stays on much longer. In fact, it stays on all day and of course, I’m delighted about the result.
A drawback for me is that Medicare doesn’t cover the Stability Adhesive, so I must pay for them in advance and then Atos (the supplier) submits a reimbursement request on my behalf. To date, Medicare has approved all of my reimbursement requests and refunded half of the amount that I spent for the Stability Adhesive.
One more hindrance I experience is the negative effect of the adhesive on my skin. I can only wear the base plate for up to three consecutive days. By the fourth day, my skin is red, irritated and a bit painful around the stoma. When that occurs, I use the hands-free device with a neckband and LaryTube until my skin feels better.
Because I have a vanity issue (as mentioned earlier), I dress up the neckband. I purchased fabrics in various colors and hired my seamstress friend to make what I call CCCs – Cora’s Collar Covers. They are just bright, colorful, washable strips of cloth with elastic on each end that fit neatly over the Dale® neckband. Also, scarves can be used to cover the neckband.
Overall, transitioning to the hands-free device has been a positive process for me. I’m still working on sharpening my skills, but I’m optimistic that I will reach an acceptable level of competence or at least I’ll have lots of fun trying!
(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.
From May (when I was first diagnosed) until early August (when I was discharged from the hospital), I was handling the challenges of being a laryngectomee or at least that was my self-assessment.
In fact, I was anxious to start the next phase, which was radiation and chemotherapy, and expressed those thoughts to my doctors. I figured I had made it this far with success, so I could easily conquer the next level.
What an optimistic knucklehead I was - lol! Easy and conquer were not words to describe my behavior. Instead, I acted like a spoiled brat because I had underestimated how dramatic my reaction would be to the procedures.
Actually, the chemo wasn’t bad for me. I was able to handle the needle poking and the 2-hour infusion time without a problem. I used it to respond to emails, write encouraging text messages to others and take highly restful naps.
But radiation was an ordeal for me. Perhaps because I’m claustrophobic, I just couldn’t adjust to the form-fitting facemask that patients are required to wear during the procedure. Also, I just couldn’t seem to relax before the process despite taking anti-anxiety medicine. It often took the technicians several tries before they could complete what should have been a 5-10 minutes process.
Further confounding me was that other patients - from young adults to sexy seniors - were breezing through the process without a glitch or displaying any of my dramatic behavior.
Anyway, I finally got through it after 6 weeks and only had to reschedule one appointment. So, I finished both treatments on October 22, instead of the originally planned date of October 21.
To celebrate the milestone, my family coordinated a “Ringing the Bell” gathering and invited my friends and colleagues. Using the City of Hope parking lot as the venue, 31 people attended to enjoy cupcakes and witness me ringing the bell that signified the completion of the treatments.
Having such wonderful support was so inspiring and uplifting and introduced me to people that I’ve known for years but had no clue that either they or a family member had been through a similar experience and survived!
I also learned an important lesson, which is: Don’t be afraid to share my experiences with others, including my fears, challenges and happy surprises. You never know who has words to help you deal with what you’re going through.
Journey to Wellness
I don’t know anyone who planned to have a total laryngectomy. I certainly didn’t. In fact, it all happened rather quickly. I was diagnosed in late June, had a biopsy and surgery in July, had a subsequent “cleanup” surgery on August 5 and was released from the hospital on August 8.Fortunately, everything moved so rapidly that I didn’t have a lot of time to freak out at first, that is, until I got home and spent time alone. Then the doubts, fears, disappointments and “what if’s” attacked.
I was only able to survive due to my strong faith in God, my incredibly supportive family, a great network of friends and church members, the wonderful team of medical professionals at USC Keck and the laryngectomees and caregivers support group that I recently joined. Together, they kept me focused on preparing for this new phase of my life, which greatly helped me in fighting depression and embracing my future with enthusiasm.
Recently, my son took me to pick up new glasses and we saw this mural. He suggested posing for photos and since I had on yellow and the lion mural included yellow, the resulting image was a great match! I tried to portray the upbeat, optimistic feeling that I was feeling at the time. I think I conveyed that because many people have shared such kind comments after seeing the photo.
I’m so thankful for all of the support and encouragement that I continue to receive. I highly recommend to anyone who is undergoing a similar experience to seek out positive people who will share uplifting, yet honest, words with you, especially on those “downer” days when you really need a pick-me-up.
If you are a person of faith, hold fast to your beliefs and use this journey to grow closer to your God. Commit to surviving and thriving in this new phase of your life and even if you have a setback, take a day or two to feel sorry for yourself, then resume your positive journey. You’ll be glad that you did and you’ll likely encourage others who are watching you and being inspired by the way you are approaching and overcoming adversity in this situation.
Here is the photo of me in front on the lion mural taken by my son last week:
Cora Jackson-Fossett is the religion editor and a staff writer for the Los Angeles Sentinel Newspaper. In this capacity, she won Merit Awards in 2014, 2017, 2018 and 2019 from the National Newspaper Publishers Association, which is comprised of 215 Black newspapers in the United States.
Previously, she served 15 years as the public affairs director for the Los Angeles Department of Public Works where she developed and implemented strategic communications programs. Also, she directed several award-winning projects and earned five L.A. Emmy nominations for producing public works DVDs. Jackson-Fossett also worked as a principal public relations representative for Los Angeles International Airport and public affairs specialist at the Chicago and Long Beach postal facilities. Jackson-Fossett retired in 2014 after 36 years of government service.
Currently, she is a member of the L.A. County 211 Board of Directors, SEIU 721 Retirees Leadership Council, National Association of Black Journalists, Black Public Relations Society, NAACP Beverly Hills/Hollywood Chapter Theatre Committee and Crenshaw Manor Neighborhood Association. She united with Brookins-Kirkland Community A.M.E. Church in 1987 and currently serves as a Sunday School teacher, Public Relations Commission chair and on the Board of Stewards under Pastor Mary S. Minor. Jackson-Fossett earned a bachelor’s degree at Indiana University, completed graduate courses at Columbia College in Chicago, IL, and received an honorary doctorate from California University of Theology. Her guiding principles are: Have faith in God, approach life with enthusiasm, treat others with respect, and never stop learning.
Cora Jackson-Fossett is the religion editor and a staff writer for the Los Angeles Sentinel Newspaper. Read her first blog post titled "Cora's Biography" to learn more information about her!