Kirklin Clinic Head & Neck Cancer Support, Birmingham, AL
Pat Sanders, Editor.
Distributed by American Cancer Society
LET YOUR LIFE SPEAK!
By Debi Austin
This is the time of year I sit and think about my life. I worked for a communications firm and had just installed our systems in my 34th state. Considering 8 months before we were only in 29 states, I was ecstatic! Little did I know in 30 days my life would change and 30 days from then my whole world would change, forever.
I left the doctor's office and went back to work. I never asked "Why me?" I knew the answer and didn't need to hear it from someone else to know it was true. I was between shock and hysterics about losing my voice; the word cancer had made me numb. While I was sitting under my bosses desk with him (he was 6'5" and I am 300+ pounds-this was live entertainment) plotting the rest of my life of silence (I had never seen, heard of, or even imagined a laryngectomee), I realized my boss, my best friend, was dying of AIDS and I was just going to lose my voice. This will give you a whole new perspective.
My surgeon insisted I attend a support meeting before my surgery. WOW! I met Elizabeth Finchem, Judith Capper and Dwight Pollack, they could speak. Each sounded different, but they were far from silent. Then, I knew I would survive; I would just sound different. This was not the end of the world, I was just going to step through the looking glass.
December 4th will be 14 years and it has been a wild ride. I often tell laryngectomees this adventure makes Mr Toad's Wild Ride look like a board game.
On this journey I have used a CoopeRand, Servox, TruTone (pretty cool-but I have no sweet spot). I had a TEP-using two different types of prosthesis. I said 4 words in eight months then dropped it down my airway and had to have it surgically removed. That was a lot of fun. While I sat there waiting for surgery my doctor came in with a 18 inch tube and ran something that looked like a coat hanger with a roach clip on the end of and said, "this should work just fine." I grabbed the assistant and said, "give me my drugs NOW!" We all just looked at each other in silence. Elizabeth kept telling me to keep practicing even though I could not speak with my TEP, it would help. It did. I could say a few words with esophageal speech! I have not shut up since.
All of us are different and come from different worlds so to speak. None of my friends were going to allow me to be "handicapped" and I am forever grateful for their stubbornness and support. I have changed careers and love it. Some want to continue to socialize as if nothing had happened. Cool, their choices are different from the man who just wants to tell his wife he loves her, or the lady that has learned to sing her grandchildren to sleep. I learned to whistle yesterday!
The one thing that is amazing about the WebWhispers, which I joined early on, and all the people on it? They have this unique ability to help people match their wants, needs and situations for the best way to move forward and live wonderful lives. Don't look back, it isn't there anymore. As I celebrate 14 years of this new world and new life I want to thank everyone for sharing the ride!
Debi Austin "let your life speak!"
By Michael Dreisbach
In last month's article I failed to give some specific information about the "ambu" bag. Some of you provided me with this feedback and for that I am grateful.
It would be a wise idea for you to have at least 1 adult size mask for the non-laryngectomy. The laryngectomee may have to be "sized" by the local rescue squad (EMS). Some of you might take a pediatric size mask while others might utilize a child's. Again it is important for you to receive the training necessary prior to utilizing this piece of equipment.
Fill out Medical forms now so they are there when needed for medical personnel. I personally think that every member of the household should fill out one of these. It does save time. It saves having to answer questions that you might not be able to answer during a stressful situation. It will provide EMS with the basic information they need in order to provide you with needed level of care.
I also strongly suggest that the member of the household whose handwriting is the easiest to read fill out the forms. If one can't read the information because of poor handwriting the form will not do what it is intended to do.
The forms can be tailor-made to meet your specific needs but start with a letter size sheet and follow the outline below. Use front and back if needed, but try to get the basics on one sheet. Update these when needed.
There are three sections and the first, your personal information, is self-explanatory. You may want to increase the number of alternative contacts if necessary.
Date of Birth: ______________
Social Security No: _______________
Telephone Numbers: Home: Office:
Alternative Numbers, Circle (Spouses Work, Cell, Relative)
Second section is all related to medical, medication, and special information.
Primary Physician Name & Number: Specials (ENT) Physician Name & Number: Medical History:
Current Medications: Name and Dosage:
Third is Insurance and legal
Medical Insurance Coverage Information:
Primary or Secondary Health Coverage No:
DNR= DO NOT RESUCITATE Circle: Yes / No Living Will: Circle: Yes / No
Medical Power of Attorney Document? Circle: Yes / No
The following is what your first responder will be filling out about you, some of which he will see or test but you can understand how having the form above filled in, will help him.
Medical History and/or Today's Chief Complaint (CC)
Cancer: Type: Date:
Chronic Lung Disease (COPD)
Chronic Pain or Problems
Congestive Heart Failure
Heart Attack/MI Date:
OB/GYN Due Date High Risk
Overdose: Of What:
Surgeries / Type / Date
Are you currently taking or supposed to be taking medications prescribed by a Physician?
Be prepared. Have your paperwork done in advance of the time you really need it.
By Donna McGary
When Grammie died, I was going to tell some stories about her life in the exact same way she would have told them. Which means it would have to be in excruciatingly precise detail and take the scenic route, in getting to the point. But my batteries wouldn't last that long!! However, to her credit, Grammie did always HAVE a point, and one that she did get to, if we could stay with her...which, to be honest, was not always easy.
Nor was she. Let us be frank- she was a wonderful grandmother...but as a mother, she could be very tough on her two daughters. They are still paying the price for that. She could be mean, and even sneaky, sometimes but what we need to remember, and honor, today, is her strength.
Isabelle grew up desperately poor, one of five children and the only girl. Her father was a drunk and her mother ignorant. Grammie told me once about some kind neighbor lady who invited her over and washed Grammie's hair with kerosene to get rid of her head lice. She was only 10 or 11 and it burned like the dickens but to Grammie it was a gesture of kindness she never forgot. She often told the story of how she met Grampa at the grange and he offered her a chocolate bar. She omitted the part that she told me once, and only once, that the reason she was there, night after night, as Grampa fiddled, was that she had been sent by her mother to keep an eye on her drunken father and make sure he got home safely. She was just 14.
To my knowledge, Grammie had no formal education beyond 8th grade. Yet she was what gerontologists call "life-long learners". One of my all time favorite stories of her is from her early days at Schooner. She knew that her most of neighbors were well educated and she was kind of the "poor church mouse" amongst them. That didn't stop her from trying to better herself, no siree! She prided herself on her acute hearing, something she retained until the very end, so she confided she used to eavesdrop on the dinner conversations of the other residents. What was astonishing was that, although she enjoyed getting all the gossip on the sly, what she most relished was "learning the correct pronunciation of those words she knew but didn't know how to use just right in a sentence"...and that is a quote!!
This is a woman, who, when I went back to college, had me write down the actual title of all my courses (although, I must admit, even she became a bit daunted when I tried to give her a course description), and when I got sick, she wanted the technical names of all my treatments and doctors so she could be sure to get it right when she talked to her friends and neighbors. I really think that her lists and notes and details and eavesdropping were all we were ever able to see of a bright and hungry mind.
She was fiercely proud of her daughters' educational and professional achievements although I suspect that comes as some surprise to them! She confided in me one time that she had been so young and uneducated when they were born, she actually learned many skills from them as they got into high school and college. Years ago, I stopped in to visit her and Grampa on Davenport St. My boyfriend was with me and he commented on the graduation photos of Ruth and Phyllis that Gram always had on that round table in the living room. Of course, he had never seen a picture of my Mom when she was younger and he was impressed. He really stumbled around trying to say what pretty daughters you have...then when Gram said those were their college graduation pictures... he tried to shift gears to say how smart and capable they must be as well...and Grampa just gave him a look like, "Son, give it up". But they were both pleased and proud, of that there is no doubt.
Maybe, Isabelle & John were ill-prepared for parenting, but there can be no doubt, they made absolutely fabulous grandparents. I adored them both I still have the last remnants of Grammie's Bluebird dishes. We shall use them later today...I still have a love of buttered macaroni and hamburg patties for dinner with fresh green beans and corn from the garden. I have fond memories of an afternoon nap listening to the tick tock of an old Big Ben alarm clock as I lay restless on the double bed upstairs...of cooling off in a galvanized washtub we dragged up from the cellar and filled with water from the garden hose...of playing dress-up with exquisite gowns from the cupboards in the attic,, of sitting on Grampa's lap, watching Lawrence Welk and eating ginger snaps...of playing with Socrates (that odd little stuffed dog...wherever did Grammie get that name?)...sorting through her button collection and what about that fellow, Mr. P., "the egg man"? My brother, Tom, "Gawd love him, precious" ...now that's an "Isabellism"...doesn't have quite as good a memory as I do, but even he must remember sniffing out the Juicy Fruit gum hidden in Grampa's pocket and those silver dollars we always got at the end of a visit!
I could go on and on...and on... and on....as could Rowdy and Gary and Janice and Tom and all our children. And we shall go on...not only today and tomorrow but sometime in the future when we cousins have grandchildren on our knees and they say, as all children do, "Tell us what it was like in the olden days." We will say, "Did I ever tell you about your Great, Great Grammie Isabelle? She lived to be 96 years old and was a wonderful storyteller right to the very end."
When we get back to my folks' house, we should all raise "just a teaspoonful", of whatever we are drinking, to Isabelle. I think she would like that! I also think, despite her hardships and difficulties, she would be the first to tell you she was blessed. She had a good long run and a short peaceful passing...we should all be so fortunate.
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.