Pat Sanders, Editor
Kirklin Clinic Head & Neck Cancer Support Group, Birmingham, AL
distributed by American Cancer Society
(Editor's note: When Dr. Peters mentioned dead space, it got my attention and I immediately asked him to write down what he was explaining to me so I could put it in HeadLines. He did and here it is. Pat Sanders)
Pat came by the clinic for a visit recently. We got to shooting the breeze when Pat mentioned a fellow laryngectomee whom she thought might be hyperventilating and a thought popped into my head. That thought is this: A laryngectomee has a more efficient way to breathe! This has to do with something called "dead space".
When you have not had a laryngectomy, you can take a breath, air enters your nose and mouth, passes through your throat, through your trachea, and ultimately ends up in the lungs. In the lungs, small structures called alveoli put that air in contact with your blood, then gas exchange occurs. Your blood gives up carbon dioxide and gains oxygen in the alveoli. Therefore, any part of the air column from the nose to the alveoli that does not play a role in this gas exchange is considered "dead space". In this case, the dead space is the nose, mouth, throat, and trachea.
Now let’s look at the laryngectomee. You have a stoma which completely by passes the nose, mouth, throat, and about one half of the normal length of the trachea. Hence, less dead space. Now, assuming that your lung volume is unchanged, this means that more of every breath you take goes toward gas exchange rather than filling dead space. This means more efficient breathing.
Well, that’s my bit of trivia for the month. Mention this little known fact at your next family reunion and wow your family members with your knowledge of medical physiology.
Glenn E. Peters, M.D. , F.A.C.S.
Director, Division of Otolaryngology - Head and Neck Surgery
University of Alabama at Birmingham, Birmingham, Alabama, USA
YOU COUNT - YOU'RE IMPORTANT
by Stan Mruk, SMruk454@aol.com
The title of this article is not just some "feel good" hype. Look around you and you'll see that this statement is true to some degree for everyone. In the world of laryngectomees, it is especially true.
Many of you had a choice - become a laryngectomee or die! Well if you're reading this, obviously you chose to live. And now you have another choice - continue to live a "normal" life or like too many of our colleagues, become a social hermit.
Hopefully, when you underwent your surgery, you had an excellent surgeon and good nursing support staff. You may have met a great speech therapist. Everyone you've met in the medical and allied professions have been great. They all told you in great detail, the part they played or would play in your life in the future. But none of them put it all together for you, none of them told you HOW TO LIVE AS A LARYNGECTOMEE!!
Life as a laryngectomee is not exactly a "walk in the park " but it does not have to be a world-shaking experience for us nor for our family and friends. Those of you who are new to our laryngectomee family will find that the people with the answers for our new life are other laryngectomees who have learned through trial and error.
Where can I find these people?? Start with your local Cancer Society. They are usually aware of all cancer support groups in your area. Once you have located a New Voice, Noisemakers or Whispering Voices Club, get to their next meeting. You will find a group of people who, though lacking their natural voice, are willing to talk to you and your family. They will be glad to share the little "tricks" they have learned over the years and, perhaps to your amazement you will find that they have allowed very little to change in their lives simply because they are now laryngectomees.
As you progress in you life as a laryngectomee, you should become aware of the International Association Of Laryngectomees (the IAL). This is a coalition of laryngectomee support groups (clubs) with one common goal - to prove to the world that we haven't lost our ability to speak, but the sound of our voices changed. Each year the IAL, along with a number of fortunate states, holds an annual convention at which time we have the opportunity to learn about the latest advances in voice restoration and/or artificial speech. These conventions are a combination of good times, fun and serious business. I have been fortunate to have attended a number of these over the past few years and I feel so much richer because of them. Thanks to some of the speakers I have heard at various conventions, I now find myself in the position of adding to the education of many local medical professionals.
Membership in a support group can help you with many of the every day tasks of living and can inspire you to go beyond yourself, to learn, and extend a helping hand to others. That's when you know how much you count and how important you really are.
Total Laryngectomee Rehabilitation
by David Blevins, David6511@aol.com
I don't recall when I first heard the phrase "total laryngectomee rehabilitation". It could well have come from Elizabeth Finchem who initially became known to many of us from her photograph in the section on "Fashion and the Laryngectomee" in Ed Lauder's classic book, Self-Help for the Laryngectomee. That face and jewelry covered stoma has inspired many men and women facing a laryngectomy that one could still be attractive following surgery. It is one of the many lessons each new generation of laryngectomees needs to learn for itself.
The phrase "total laryngectomee rehabilitation" has apparently been used for decades to describe the goal...the ideal...towards which most of those involved in laryngectomee rehabilitation strive. Total laryngectomee rehabilitation (TLR) is the goal of returning the laryngectomee as much as possible to all aspects of his or her pre-laryngectomy life. TLR encompasses returning to work, if possible, and to all social and recreational activities enjoyed before the removal of the larynx.
One individual facing a laryngectomy was told by his ENT he would have to quit his job and go on Social Security Disability. The man's job did not involve speaking and there was no reason why he could not return to work after a recovery period. Even if his job had involved speaking, returning to other productive work was certainly possible. Another man had just been told by his surgeon that he would have to have a laryngectomy. The man said, "and I just had a pool put into my backyard"! The surgeon replied, "You might as well fill it in". Unfortunately, he did fill it in. Ridiculous. While water sports might require some adaptations and precautions, they need not be abandoned completely.
One factor which might influence people into thinking that having a laryngectomy is so debilitating is the very slow healing process. It is something in which the healing process is not measured in days or weeks, but in months and even years. The laryngectomee and those around them might falsely conclude that the way they are right after surgery is the way they will continue to be. I personally urge those facing laryngectomies to retain their rights to return to their jobs if this is at all feasible.
TLR is also defined by what it is not. TLR means that becoming a laryngectomee is not a seriously handicapping condition for the vast majority of people. As one laryngectomee put it, "I am not disabled, I am just inconvenienced". Another remarked that after they had healed they felt they were 95% the same as before the laryngectomy. It is important for all of us to focus on that 95% rather than the 5%, and work around and compensate for that 5%.
If your life work was as a professional singer, you might have to find other work. But a surprisingly large number of laryngectomees who are teachers, preachers or salesmen and others who need to speak can continue to do these jobs. And a few larys have even had speaking parts in movies. And certainly an inability to continue in one line of work does not disqualify you from doing any meaningful work.
TLR is about independence, not dependence. While we all like to be taken care of on occasion, we know it is a bad idea if we are actually capable of taking care of ourselves. "Use it or lose it" suggests that if you sit long enough you will lose the ability to walk. Physical therapy pushes you to the limits and physical therapists are often jokingly referred to as "physical terrorists" by their patients. But this is what gets the patient back and doing what you are able to do the quickest. "No pain, no gain" is the motto of physical therapy as well as physical training. Like any patient, the laryngectomee needs to work hard at recovery.
A related idea is "tough love". Our loved ones need to care for us so much that they make us care for ourselves. Sometimes loved ones make the mistake of helping too much. For example, I met a woman laryngectomee at the IAL convention in Reno who was both a poor TEP speaker and no better with her Servox. She said that her family had learned to read her lips. Big mistake. What is her motivation for working hard to improve her ability to speak if her family is so accommodating? They needed to insist that she speak with the TEP and AL. When she attempted to also require that I read her lips, I waited for her to dig her Servox out of her purse and use it. My ability to read her lips was simply not helping her to acquire speech.
Certainly it is frustrating while you are learning to speak using any of the methods of alaryngeal speech, but the learning process took much longer than it should have by her family's acts of what they thought was kindness, and the lary's laziness. "Poor mother is trying to speak and it is so difficult for her. Let's make it easier on her by reading her lips or even pretending to understand her when we don't". This is not helpful to the laryngectomee, and not real love.
Still another idea from the field of psychology is Abraham Maslow's "hierarchy of needs". After we have met our basic survival and safety needs, our need to be loved and productive, etc.; the highest need is to become "self-actualized". This idea is mirrored in that slogan "Be all that you can be". Laryngectomees need to come as far back in their rehabilitation as it is possible for them to come to fulfill this ultimate need.
A final related idea from the field of psychology is "codependence". This is when the needs of two people feed each other in negative ways. If a laryngectomee enjoys the role of invalid and his or her caregiver enjoys feeling needed, both can act together to "enable" each other and slow or even halt rehabilitation. A line from a song is, "If you love someone, set them free." We should want those we care about to be as free as they can be by being as independent as they are capable of being. The aging process will eventually slow almost all of us down, and there is no need to hasten that process by failing to rehabilitate ourselves.
We are, of course, all different. And we heal differently, and are at different stages of our lives. Many of us become laryngectomees after we have retired, or shortly before we might have anticipated retiring. We are as entitled as anyone else to retire, or to only be expected do what we are actually capable of doing. And certainly some who face the laryngectomy have other accompanying debilitating illnesses, surgeries and complications.
But both society and we are better off if we endorse and work towards total laryngectomee rehabilitation for ourselves and our fellow larys.