Patient Stories

    Implantable “Voice Box” Lets Bellwood Man Speak – of Gratitude

Johnny Jackson has lived, as he puts it, “a full life” – with good wages, nice cars, and an appreciation for a drink or a smoke.   But that lifestyle may have contributed to advanced throat cancer that nearly took his life and required removal of his voice box.  The 59-year-old Bellwood resident believes there’s a greater purpose for him now that he’s survived cancer for the past two-and-a-half years.  “I can help someone else.  Maybe that’s one of the reasons the Lord spared me,” Jackson says.  

Even without a voice box, Jackson can speak, thanks to a small plastic device called a tracheoesophageal puncture, or TEP.   Many of the 30,000 Americans affected by throat/laryngeal cancer each year lose their voice box like Jackson – if they survive.   Without a TEP to replace what they lost when the voice box was removed, people cannot speak again.

Jackson received his TEP as a patient at the University of Illinois at Chicago’s Department of Otolaryngology – Head and Neck Surgery, and is not only alive, but has a lot to say about life in general.  Two-and-a-half years ago, though, talking again was no guarantee.

In 2007, Jackson developed significant throat pain and related symptoms, and came to UIC for treatment.   His doctor, Kristen Pytynia, M.D., assistant professor of Otolaryngology and Director, the Head & Neck Surgery Center, diagnosed late-stage cancer.   She tried chemotherapy and radiation, but the cancer was too advanced to alleviate the need for cancer surgery and removal of his voice box.   

Jackson, who’d worked 38 years as an operating engineer for a northwest suburban construction firm, says he didn’t grasp the urgency of his case right away, but soon, with Pytynia’s help, did.  “After the first week or so, I started to come to the realization that cancer is serious, nothing to play with.  It’ll take you out.”  He says he became very emotional, weak, and somewhat depressed once the radiation treatment started, a typical reaction, Dr. Pytynia noted.

As the cancer continued to progress, even during treatment, and he became weaker, Pytynia urged him to undergo surgery immediately.   “She said that if I didn’t have the surgery when I did, I would be too weak to get back to the hospital, that I’d choke to death from the swelling,” Jackson remembers.  He left his job and had the surgery just in time, Pytynia says.

Patience isn’t one of his greatest strengths, Jackson says.   When Pytynia told him that a TEP could be implanted within weeks of cancer surgery, he was anxious to speak again.   Too anxious, as it turned out.   He didn’t wait long enough for swelling to diminish when the TEP was first implanted, and almost choked, he says, adding that Pytynia came to his aid, “saving my life for the second time,” he adds.  Once swelling had subsided enough for his throat to handle the TEP, he began benefiting from it right away.   He says he never removes it, except for daily cleaning or to visit the doctor.

A TEP is a small button that sits in an opening made by a surgeon between the esophagus and the trachea.   A valve in the device keeps food out of the trachea to prevent choking, but lets air into the esophagus, enabling patients to speak.   With help from a TEP, many patients, like Jackson, begin learning to speak again within weeks of surgery.  “At first, it was hard to learn how to suck air,” he said.  “But after awhile, it becomes automatic.”   For a typical patient, a TEP lasts for several months to a year before requiring replacement.   Some patients go through a good number of TEPs, because about 60 percent of laryngeal cancer survivors live five years or more.

In many ways, his voice is much better after the surgery.  His sister Martha says his voice actually “sounds stronger.  He’s always had a heavy voice, so there’s little difference,” she adds.   And Jackson says breathing is much easier post-surgery.   “I can settle down and talk now,” he says.   ”Today I can talk longer, in a steady voice, than in the years leading up to the cancer diagnosis and surgery.”  

Jackson is grateful for the TEP and the ability to speak again – not to mention his life.  With wife Christine, six children, “too many grandchildren and step-grandchildren to count, at least 15,” and a very close family (including his elderly mother, for whom he and Christine care in their home), there’s a lot to be thankful for, he says.  “If I hadn’t had their support, I would have given up.  It was very emotional to see people who care about you with tears in their eyes over you.  It’s joyful, something to be proud to talk about.  I look at it as a joyful time, even though I went through a lot of turmoil, because I’m still here.”

With all the small children in his life, the TEP is a conversation piece, too, he says.  He always had a deep, scratchy voice, he recalls, and his TEP-enabled voice today is no different.  “Some children find it amusing,” he noted.  “One of them had a scratchy throat one day and told her mother, ‘My voice sounds like Mr. Jackson’s!’”

He is also thankful for his relationship with Dr. Pytynia, as the two have developed a great deal of mutual affection and respect.  “Dr. Pytynia’s probably one of the best gifts that ever could have been given to the universe,” Jackson says.  “During my sickness, a lot of things she said about the treatment came to pass.  I’ll tell anyone to see her.”

For her part, Pytynia speaks with great appreciation and respect for how Jackson approached his condition and recovery.  “Despite the incredible stress associated with this kind of illness, he showed real courage in taking this on, and wonderful dedication and humor since the surgery,” Pytynia said.  “Mr. Jackson is an inspiration, to me and other patients.  He really wants to help others learn about lifestyle choices they can make to help prevent cancer.  He’s truly a wonderful man.” 

As impressed as Jackson has been with Pytynia’s medical ability, he’s even more impressed with her bedside manner.  He says she called him regularly after the surgery to check on him and his spirits.  He remembers her calling him during a critical time in his treatment to tell him she had to go out of town, but promised to check in by phone when she returned, on a Saturday night.  “And she did.   She’s the kind of doctor whose patients talk about how nice, great, and good she is,” Jackson says.

Jackson, who calls himself a “praying man,” says he experiences a lot of blessings nowadays.   He is quite eager to tell his story, not only to speak highly of his doctor, but to encourage others to live in a way so that they might not have to face what he did.  “I’m very grateful to still be around.  I don’t have to still be around.   A lot of people who had the same cancer who are no longer with us,” he notes.  

“I really lived.  But I’d like for the next person after me to check himself or herself to slow down on alcohol and doing things that might seem ‘fun’ but in the long term may not be.   People should put a check on themselves, because the consequences can be significant.  I know I can save someone who’s going through what I did a lot of grief.”

According to the statistics on laryngeal cancer, Jackson’s advice could be of real help, Pytynia says.  “The groups at highest risk for laryngeal cancer are African-American men, 55 and older, who smoke and drink.  Mr. Jackson is in all those categories, so when he advises people like him to shy away from tobacco and alcohol, it can really make a difference,” Pytynia added.

And even as a survivor, not all is perfect.  Jackson was too weak to return to work, though his pension and disability benefits help support him today.   And though a TEP helps him speak, breathing through the neck has its own challenges.   For example, cold days usually find him staying inside.  “The cold weather has a lot to do with your lungs,” he notes.   “I no longer have the filters to keep the air out.  All the oxygen you take in changes the temperature; it goes in your body and is ice cold.   When my nose runs, I can’t sniff, so it’s very challenging.”   And Jackson, a diabetic, says he simply doesn’t have the energy or endurance for heavy exercise.

Eating sometimes can be difficult, too, he adds.   Some thick, sticky foods like peanut butter are hard to digest, for example.    He says he needs to chew food a lot longer and finer.   “Sometimes food gets stuck near the valve, so I need a drink of water to clean everything out,” he notes.    And of course he doesn’t smoke or drink anymore.  

Even with the challenges associated with being a cancer survivor, Jackson’s experience with Pytynia and his chance at a longer life stand out above all.  “What it all means is another day on earth.  Every day is a brand new frontier.  I don’t have any complaints,” Jackson says.