Kirklin Clinic Head & Neck Cancer Support, Birmingham, AL
Distributed by American Cancer Society
Pat Sanders, Editor
Third Quarter, 2008
by Tammy Wiggington, M.S., CCC/SLP
Even after you have healed from your surgery you need to maintain a close working relationship with your surgeon. Your doctor is very interested in treating your cancer and maximizing the quality of your life during and after cancer treatment.
Part of maintaining quality of life is early detection of remaining cancer and new cancers. The fact that you have had laryngeal cancer puts you at an increased risk for developing other cancers in the head and neck region. Use of tobacco products, reflux, or other medical conditions, put you at risk for developing secondary cancers, such as lung or esophageal cancers.
Follow-up for the first two years after your surgery is very important. It is critical to detect any remaining or new cancer as quickly as possible. For the first year, visits are generally scheduled every 4-6 weeks. During the second year, visits are generally scheduled every 6-8 weeks. This schedule is based on observations from many cases indicating that if a laryngeal cancer is going to return, there is an 85% chance it will do so within two years after treatment has been completed. After the first two years, and up until 5 years, after treatment, visits are generally scheduled every 6-12 months. Expect routine chest X-ray's, CT scans and Pet scans intermixed with office visits.
Just because you are seeing the doctor on a routine basis does not mean you do not have to be attentive to your own body. Any new pain, difficulty speaking (TEP, Esophageal or artificial larynx), breathing, or swallowing warrants a visit to your physician.
Look for changes in every possible area of your body that might indicate a continued, recurrent, or a new cancer. Perform self-directed neck examinations similar to the monthly self breast examinations that all women should do. Ask your doctor to show you how to do this. You should seek a prompt medical evaluation if any new mass, lump, or nodule is noted. It is best to follow-up with the surgeon who did your surgery because that person knows your body best and can compare your current status to previous examination. You are going to be having a long term relationship with your cancer doctors. That is why it is important to find doctors you trust.
No one likes to think about the possibility of finding a remaining or new cancer. But your quality of life and overall survivorship depends on you and your following up.
IAL Annual Meeting & Voice Institute in Little Rock, AR
August 27th – 30th, 2008
IAL Website http://larynxlink.com/
The meeting will take place at The Peabody Hotel
IAL News of May, 2008 has printed application forms.
Online Forms available for download at:
Annual Meeting Registration - $65. Before August 1
Voice Institute Registration - $80. Before August 1
Batten Scholarship Application – original date mentioned was to have application in by June 1, but it was late getting on line so I just checked this morning (6/15/08) with the VP of the IAL, John Ready, firstname.lastname@example.org His answer: Since the AM is late August, please change the date to August 1, 2008. It will be changed online
However, if you want and need a Batten Scholarship, it would be smart to be one of the first that apply. If you wait, they may fill up.
IAL, 925B Peachtree Street NE, Suite 316 ,Atlanta GA, 30309
The Power of Words...
I learned to read with "Dick and Jane." Frankly, I don't know anyone who ever cared about seeing Spot run. But we did learn to read. I found reading interesting a few years later with Dr Seuss (the world's greatest doctor, by the way!). "Green Eggs and Ham" taught us it was OK to try new things. "Mulberry Street" taught us to look around and the "Star Bellied and Plain Bellied Sneetch's" taught us that we were all different.
I didn't learn how painful words could be until I was about 12 years old and an abusive monster moved in across the street from us. He was a bully, foul and mean. But he knew how to use words that inflicted the most pain to his wife and children. They had no protection in those days. Everyone just hoped he would say something to the wrong person and get his butt kicked. Not a very effective solution, but what else can you hope for at age 12?
Communication has a very wide spectrum of definitions. And we accept all of those on some level because most of them affect our daily lives. But, when it comes to the meaning of words, as humans, we turn the meanings into something that fits our attitude or feelings at the time. And as humans we react accordingly. This is a great disservice to ourselves and extremely painful, but again it is human nature.
I think we all grew up with a certain amount of expectations. Some good, some bad, some left deep impressions both ways. We all heard, "travel to the beat of your own drum; take the path less followed; follow in the footprints of great men; you have big shoes to fill," and so on. Very few of us heard, "eventually you will be different and you must learn to walk without a shadow to pull you along or give you a push from behind." No one ever tells you that learning "life skills" is the fine art of adaptation. Oh but it is, daily. And never is adaptation more upfront and in your face than when you are looking at life altering or threatening changes.
I think when we face fear or change, life and words take on new meanings to us. I know they did in my case. All my life I read self-help books just wanting to be "normal". A definition that has escaped me my entire life on some level. It took me 40+ years to figure out that I didn't really care and pretending to was taking up entirely too much of my time and energy. What a freedom that was when my shadow came back (in my mind).
I always knew that bullys and abusers knew far more about the power of painful words than most people did. Or at least they knew how to use them to cut like a whip. I learned to treat them like the animals they were when backed into a corner and in some cases I learned their skill better and the fight was now equal. They do not deal well with "the bully that bullies the bully." I was not born with rear view mirrors and backing up is not a graceful act for me.
When I became a laryngectomee I had an amazing amount of support. Perhaps this is why I, to this day, believe there is no such thing as a useless support group, some just need a little more reflection and guidance. Early after my surgery, Elizabeth Finchem suggested (strongly suggested I might add) that I take a public speaking class. Like I was ever going to delivery another speech? LOL... It had nothing to do with my ability to speak, it was to reconnect with my self-esteem and she knew it. Wayne Baker taught me to "want to learn speech on every level" no matter if it was with a speech aid or esophageal, do it! Jack Henslee taught me to never not see those in pain. (Please check out what AL and Jack are doing with Costa Rica laryngectomees in providing help with speech and equipment. The truth, of a just a little bit of help, meaning a new life for some. It is amazing!)
We are often offended because people look at us in a funny way when they hear the sound of our voices. Let me ask you this: When was the last time you spoke to a blind person, or just said, “Hi” to someone in a wheelchair, or waved at a little old person on the street? We are all guilty of not seeing. This does not make us bad, but it does give us a link to being the same and, in some way, human.
Survival is a two headed sword. We all fight for survival because it is our deepest human nature to wish to live. Yet, we are not always well prepared to accept our survival. And being unprepared, turns many things ugly. All of a sudden words are extremely painful. Before surgery, if you were told to go home and have a normal life, you would go home, embrace your family, and have a gathering. Someone tells you that same thing after laryngectomy surgery and you want to poke pins in a doll that reminds you of them. Same words, and, 99% of the time, the same good intention. But the pain just exploded in your mind and it is hard to find peace.
I make no apologies for having been and probably will be again, in the future, rude to anyone who tells a new laryngectomee they will sound "normal" with a particular form/type of speech. Some suit a person's needs better than others, but the word normal is painful for a few years in this community.
I believe the IAL has a three year rule for BOD members. It has nothing to do with not being worthy, it has to do with understanding on all levels the person you are now and moving forward. And, face it, the first few years are an adventure in learning on every level of life. You must adjust, physically and mentally, become a health care advocate and teach a community the fine art of adaptation and the list goes on.
The physical reality for many of us is. we lost our voices. Believe me, I mean no disrespect for those who have lost more. You are the true dragon slayers of this horrible adventure through life. But losing our voices, touched our souls and created a cloud of doubt for every part of who we are. The time limit for adjustment is personal. No one can tell you when the pain will stop and the cloud will disappear. Oh, but it will and there is yet another adventure for you to have.
When I first joined WebWhispers there was a wonderful lady that just wanted to sing her grand babies to sleep, all else was secondary. Someone wrote and told her how they did it. She accomplished so much more after that. It gave her hope that she could do anything she wanted. We have a lady in our local group that has had many surgeries and fought many battles, Margie is one of my heros. She has strength I cannot imagine. These are our warriors. When words hurt, remember, these are people that cannot walk in your shoes. You are a hero to someone starting their battle. You are a warrior to someone searching for their own strength. You are an inspiration beyond the words of mortal man. You have earned the right to walk with giants! You are the right stuff!
Medicare and Me
by Pat Sanders
There has been talk for years of health care to cover the multitudes, rich or poor, young or old, sick or well.
Where is it? In the future. Always promised, never delivered.
We do have Medicare now for the old or disabled and the states have responsibility for the indigent, with what happens to or for you, on their Medicaid plan, being different in every state.
If we have universal coverage, who would run your health care plan?
Some want to have private insurance to cover us but will the plans be so complicated that whatever you end up with is not what you thought you signed up for? Will there be standard rules so you can make a comparison from one to the next?
Should we set up another big government bureaucracy? How can we support another one in any category.
What about the younger people, the ones who are hanging onto a job so they can keep health insurance until they are old enough for Medicare? I was one of those and I would have been so happy to go to the bank and pull out my savings to pay health insurance for that period of time. I didn’t have much but I did have my home and I didn’t want to endanger that. I could give up all extras, get a part time job to buy food, but if my health went and the bills piled up from hospitals, doctors, clinics and labs, I could lose everything. That is a gamble I didn’t want to take.
So, with recent check-ups saying I was in good health, I went to some insurance companies and asked, “Who could furnish me with fourteen months of coverage to get me to Medicare?” I got quotes for catastrophic insurance with a $5,000 deductible. They paid nothing until I reached that level but once there, they paid most of it. So I signed on, had the extra exams they wanted, and counted the extra I paid per month for the insurance as a safety net that I would not have to use.
I had some bad allergies that year and was in and out of the ENT’s office, got a nodule on my vocal cord. He said lots of people get those and I was sent for voice exercises but I paid all of my bills and never reached the level of filing for anything.
Seven months passed by and the New Year rolled over. Seven months to go till my birthday month and being covered by Medicare “forever”. Never again would I lose my insurance every time I changed jobs or moved to another area. (Although Cobra had come along toward the end of my employment years. It was a blessing but it expired too soon!
I showed up for my mammogram (Hear the drum roll in the background?), and was held over for more pictures. That often happens if the mammogram is not clear, so I did not give it another thought…. Until my doctor called and said he had received the report. He did not think it was showing anything bad but there was something there and a biopsy was in order. He was sending me to a surgeon. Well, to get back to insurance, breast cancer ran though my $5,000 like water through a sieve and I filed with the insurance company. By the time I was through with the additional surgery and radiation, the insurance company owed over $30,000 and you can guess what happened next. They started mouthing “pre-existing”. Many arguments and document copies went flying. I worked feverishly to prove that it was not. A lawyer friend suggested I write and gave me the words to use. I did and they did pay. It was clearly their responsibility to do so.
However, by that time, two months till Medicare for me, I knew I had a throat problem and that would just as clearly be “my bills” to pay because it had to be an exacerbation of the problem from the previous year. No, we didn’t know I was going to have cancer but I was being treated for a throat problem. There are people who think no one should bet on a lottery but it is ok to bet your life. So, I waited till I was on Medicare to call the doctor. With other medicines, and back to the old sore throat treatment, finally a biopsy and radiation, sent to an Otolaryngologist, and another biopsy. It ended with a laryngectomy.…. Paid for by Medicare and my new Medigap policy. I could have played it closer because Medicare doesn’t recognize preexisting conditions. They accept you as you are on the date you are eligible. On the other hand, the doctor still treated me with voice rest and guaifenesin for several more months.
To go back to “getting more coverage for people who don’t have any”, I have some thoughts. Suppose we had an Early Medicare for people age 60 (You have to start somewhere and add others as you go) and over. If they had no insurance, they could optionally sign on for a basic Medicare plan and no doubt private insurance plans would come up with an optional Early Medigap. Dental or Vision coverage could be bought privately and optionally…or they could pay their own as they go, as I do.
Early Medicare could be run by the same people, who already have the buildings, offices, employees, forms, rules, contacts and all they would need is to have people approaching the age for Medicare to sign on early and PAY EXTRA for the coverage. The organization is there and new rules and regulations could be written for the Early participants.
Next year, they could drop the year one more to get people on gradually, accepting people who needed insurance at age 59, which would mean the ones turning 60 and the ones turning 59 would both be eligible. Each year, they could go to the next year down, which would be two years of ages able to join. In 5 years, we would be offering coverage to people of age 50.
The aging section of the population is only one segment of the population but these are some of the most likely to need insurance coverage and find it the most difficult to buy.
I don’t know what cost will be for Medicare patients. It goes up every year but it is about $100 per month for the basics with big deductible. I pay $154 currently for my Medigap and $34 for Medicare D…so I am up near $300 per month, and happy to pay it. I do not have Dental and Vision policies (except medically related, through Medicare). If I should need glasses or a hearing aid, I would have to pay for that. But I am covered for most of the things that could leave me without a home or bank account and for the deductibles.
I have had friends who wanted to stop working, had saved money and could afford a simple retirement, but there was no health insurance coverage to be had after Cobra ran out so they kept working.
I know I am just dreaming but I can tell you that the best birthday present I ever had was Medicare. It’s not perfect but it is so much better than anything I ever had before because it is “there” for me when I need it.
Kirklin Clinic Head & Neck Support Group
No meetings until further notice
In the interim, we suggest that you join WebWhispers if you have an email address.
We are also invited to attend an All Cancers group with a luncheon every third Tuesday. Call or email Pat Sanders if interested. (See below)
B’ham: Pat Sanders, 205-980-8416; email@example.com
Kirklin Clinic Otolaryngology : 205-801-8456 FAX
Glenn E. Peters, M.D. Glenn.Peters@ccc.uab.edu
William Carroll, M.D. firstname.lastname@example.org
Nancy Lewis McColloch, Speech Pathologist ; 205-801-8460; email@example.com
WEBWHISPERS - INTERNET SUPPORT GROUP FOR LARYNGECTOMEES
http://webwhispers.org is a site with helpful information on what to do before and after a laryngectomy. It includes educational sections on larynx cancer as well as a complete Library of Information, lists of Suppliers, the monthly newsletter, Whispers on the Web, and HeadLines This is the largest internet support group for laryngectomees and is a member club of the IAL
The Official site of the International Association of Laryngectomees
http://www.larynxlink.com Information is available for the IAL Annual Meeting &Voice Institute held annually in various locations. Educational and Fun.
A Laryngectomee site from the United Kingdom
http://www.laryngectomees.inuk.com presents information from all over the world and HeadLines newsletter is carried on their site under Letters from America.
For cancer information call 800.ACS.2345 or visit our Web site at www.cancer.org
American Cancer Society in Birmingham: firstname.lastname@example.org