POST-LARYNGECTOMY:
GREGORY M. SNEAD’S STORY

Five years ago, cancer took Gregory Snead by complete surprise. “Despite a 25-year history of excessive alcohol and tobacco use, and full knowledge of the attendant dangers, the harsh reality of my situation still overwhelmed and bewildered me,” he says. In the fall of 1998, Mr. Snead had a sore throat that just wouldn’t quit. “I thought it was strep. It wasn’t. Tests did not indicate a problem. After about a month, though, I knew in my heart that something was very wrong. I didn’t know, however, the extent of the problem or the seriousness of its nature.”

Diagnosis of a small, tongue base squamous cell cancer was finally made by otolaryngologist Dario Kunar, MD, of Ear, Nose and Throat Associates, who Mr. Snead found by consulting the GBMC Physician Referral Line. In October 1998, Gregory Snead had a portion of his tongue removed, along with a neck dissection. “Smoking and alcohol abuse were no doubt the cause of his cancer at such a young age (42),” says Dr. Kunar.

Almost three years later, Mr. Snead’s cancer returned in the same location. “This time, because of wider involvement and the need to get clear margins, we had to do more extensive surgery, including removal of the larynx,” says Dr. Kunar. “We also reconstructed a portion of his throat with tissue from his chest; all of this required splitting his jaw down the middle to get good access. Greg also had postoperative radiation therapy, completed in October 2001. It will take another three years or so before we can proclaim him cured of his cancer, but every month without it coming back means the less likely it is to come back. At present, I will see him every three months for thorough head and neck exams, unless he develops a concerning symptom in the interim. One cannot be too vigilant with cancer.”

The laryngectomy* left Mr. Snead without a larynx (voice box), explains Katie Dietrich-Burns, MS, CCC-SLP, Clinical Specialist, Speech Pathology, of the Milton J. Dance, Jr. Head and Neck Rehabilitation Center. “With this surgery, there’s a permanent opening or tracheostomy made in the neck, and the patient breathes through the ‘stoma.’ At the time of Greg’s total laryngectomy, Dr. Kunar also placed a tracheoesophageal puncture (TEP), a one-way silicone valve which allows the patient to produce voice.”

To speak using the TEP, a person breathes in through the stoma, then covers it, which opens the valve and vibrates the tissues in the back of the throat. Since the TEP cannot be used until 7-10 days after surgery, most patients begin speech rehabilitation with an electrolarynx, a battery-operated speech device that also serves as a back-up if the TEP does not work.

“Greg is very proficient with both means of communication,” says Ms. Dietrich-Burns. “In addition to his TEP, he also uses an adjustable tracheostoma valve (ATSV), a secondary one-way valve that eliminates the need to occlude the stoma with his finger. Greg’s job in sales demands that he have proficient speech and a voice that is understood easily by strangers. He has worked hard to meet that challenge. Greg cares for his prosthesis on a
day-to-day basis, and I only see him periodically to adjust or replace the device.”

It was not easy for Mr. Snead to arrive at this point. “After surgery, I began to create voice almost immediately,” he says. “That gave me hope, and the importance of maintaining that hope is immeasurable. It took about a full year for me to become as one with my new voice, with my new manner of speech. Today these things are a normal and integrated part of my day-to-day living. Figuring out the TEP, both how to use it and how to take care of it myself, these things take time. Most importantly, I had to find my peace with it, and for me, that also came with spiritual growth.”

When possible, Mr. Snead attended the Laryngectomee Support Group (at GBMC). “He has a very positive attitude and a lot of insight that he shares,” says Ms. Dietrich-Burns. “He adds so much to our group discussions and also to my knowledge as a practitioner as to what it might be like to live with a laryngectomy.”

“Right off the bat, having a place to go (the Dance Center) where they understand a laryngectomee* was a huge relief,” says Mr. Snead. “It wasn’t until sometime after the laryngectomy that I realized a resource like the Dance Center isn’t available in all places. I am one of the lucky ones. I firmly believe that if I was a billionaire, I wouldn’t be able to find better medical care. The treatment that I’ve had throughout myillness, from Dr. Kunar, GBMC, the Dance Center and others, has been second to none. I’m very grateful for that, and I’ve taken full advantage of the resources that have been made available to me.”

Mr. Snead has made his own, personal contributions to the Dance Center. For people  contemplating total laryngectomies, he has volunteered to share his experiences. Additionally, Mr. Snead has attended two Dance Center TEP Conferences, where he works with student speech pathologists, offering them the opportunity to learn from his experiences and to practice changing his TEP valve.

Beyond coping with the laryngectomy, Mr. Snead, like many other head and neck cancer patients, has also endured complications from adjuvant radiation therapy. “Swallowing is fine for me, but eating is difficult,” he says. “Probably more than the laryngectomy, the repercussions and changes to my body in my now day-to-day functioning are worse from the radiation. The radiation destroyed my teeth. My salivary glands are extremely compromised, my taste buds are compromised and my sense of smell is  non-existent. The whole GI part of my body is different. The only interesting thing I can say about all of this is that, curiously, I have the memory of smell—and only pleasing smells, at that. If I am in another room and I hear my coffee maker, I swear that I can smell the fresh coffee brewing. But, I know I’m not. If I’m in doubt that food has gone bad, I’ll ask someone else to smell it, or I have to look for changes in texture and color.”

Thanks to the staff of the Dance Center, “I was as prepared for the procedure (complete laryngectomy) as I could be,” says Mr. Snead. “They explained it; Dr. Kunar explained it. I went to a support group meeting and there were other laryngectomees there. I knew what they sounded like and how they spoke before I had my surgery. I believed I was as prepared as I could be… But you are still really not prepared for how much you have to change your life until you  experience it (the laryngectomy). It’s terribly traumatic. It’s scary, it’s painful, it’s uncomfortable, and it’s major surgery. And after it, you’re different. You’re forever changed physically, and in my case, emotionally and spiritually.

“Any serious illness, any life-threatening disease, such as cancer, changes one’s perspective on life and the world as it is. The laryngectomy gave me a second chance at life and a whole new perspective. If there have been growing pains, then at least there has been growth. I count my blessings. I do my best. I’ve come to find with renewed fervor, and borrowing from the late Bishop Fulton J. Sheen, that ‘Life is worth living.’”

* laryngectomee: A person whose voicebox (larynx) has been removed.
* laryngectomy: Removal of the larynx.