HeadLines

 

Kirklin Clinic Head & Neck Cancer Support,  Birmingham, AL

Distributed by American Cancer Society
Pat Sanders, Editor
Fourth Quarter, 2009

 


VICTIM TO SURVIVOR

by Debi Austin

 

Dealing with cancer is an adventure to say the least. No two paths are the same, and no matter how much love and understanding we have in our lives the journey is very personal and will only move at our chosen speed. Our friends and family may help with the detours.

The adventure begins when "we" take our first step. The lines may be drawn for us, but the battle is ours, and it is very personal.

Cancer is personal, as is the reaction and the steps that follow. It is going to depend on where you are mentally and physically at that time, what your actions will be. We are given a very short window to decide treatment and care. Survival is instinct. Argue all you want, but that is the first and foremost thought. Then we deal with family, security, the future, and the pile just keeps getting higher with every breath we take. To be overwhelmed is an understatement.

During the course of research on various levels I have discovered that "victims" often feel as if they have lost control of their lives and the power to face or confront (extremely understandable). A part of them has become paralyzed and prohibits them from moving forward.

And then... There is no rhyme or reason to this.. the victim becomes the survivor. Like a flower emerging. The inner strength awakens and a warrior appears. The battleground was not a personal choice but it is a personal war.

We wake up! We awaken each day with the opportunity to see beauty, to hear the birds sing, and to touch. We can walk through the park and see children play and hear the giggles, we can cuddle small furry animals, and on occasion smell puppy breath (a personal choice). We can remember an easier time with smiles and sighs.

We have a strange understanding of strength. Power and strength are not necessarily recognized on equal footing. When we think of strength we think of a fighter in the ring, the ability and dedication of our soldiers. Do we think of the strength of a single parent facing each day short of help, funds, and understanding? Do we think of the person in the wheelchair looking at a mountain of steps and the strength it takes to face that?

Power is who you are and how you handle this journey and that is not up for debate. May personal choices may not/will not fit anyone else, nor will the reasoning behind those choices. How you continue on this journey cannot be determined FOR you, but only BY you. That’s power. In the theater, lighting can be everything, as can life. The light you stand in is controlled by you.

I was never a victim. I knew the rules of the game when I chose to play in the streets. I did not ask "Why me?" because I knew the answer and so did everyone else. I did not ask where I would go from here? I decided how I would get there.

Silence was never an option, since that would have meant defeat, and defeat is just not going to happen! Sound was secondary; being understood was and still is a mission. If you feel anger, remember that anger has to have direction and meaning; make it work for you!

I was not my old self, and I surely wasn't wasting what was left of my precious time searching for shadows. My life forever changed the day Dr. Accomazzo said the word cancer. The fact that I survived was a personal thank you to my surgeon and every medical professional/researcher/technician in this field, to every survivor that has started and finished this adventure. The dedication of the many before me that have taken this journey to the end only inspires me to want more for myself and the lives I have the ability to touch.

I recently met a wonderful lady starting her journey. I have the privilege of being a part of this adventure. You can see the split second when a newbie realizes that all their dreams and goals are not shattered but that life has detours and not all detours are road blocks. Maybe, just maybe, it is time to redefine dreams and goals. I think this split second comes as soon as they communicate without pencil and paper. No, this may not be their first choice, of course, and it probably will not be their last. But the dawning that it is not lost but has been altered opens a new door of understanding.

Necessity is the mother of invention; this is the time we get to reinvent the person we are. Our ability to process all this in a short time is a real test. The ability to communicate is on equal ground with the healing process. It is a "what you lost" to a "what you must find" mental action. The most basic association of words, we can deal with. How you sound will never be as important as what you have to say. Need proof: ask the husband/wife/child that hears "I love you" after a surgery.
You don't get to dump your expectations on others and have them accepted without question. This truly is a moment to appreciate the sighs in life. Life is a banquet; fill your plate; don't leave the table without dessert.

I cannot change how I lived my life and, truth be told, I am not sure I would want to. I did the things I wanted to do. I accomplished the things that were always on the front burner. I did not and still don't miss the things in life that are important to me.

You enter a room as a victim of cancer. You walk to your table as a warrior coming home from battle. You leave as an educator because every life you have touched is inspired with hope, understanding, and desire to renew and reconnect others with their personal power and the strength to battle their own demons!

This is human nature. When you surround yourself with people who expect little of you, you will live up to their expectations. When you surround yourself with people who expect more of you, you will exceed their expectations.

YOU ARE A SURVIVOR, AND YOU ROCK!
Debi Austin, 1992

 

"...you have not converted a man simply because you have silenced him."

 


 

WebWhispers – What Is It?


WebWhispers was started in 1996 for those who had questions about larynx cancer treatments, surgery, recovery, and what life is like after laryngectomy surgery. We are now the largest support group for individual laryngectomee survivors of larynx and other throat cancers. Our membership is composed of patients, caregivers, medical professionals and suppliers of the special products we need.
We offer advice from those who have been there and education at the time it is needed.

WebWhispers members will be there for you or your patients rehabilitation and you may find many of the answers to your questions discussed here on our WebWhispers site. http://webwhispers.org/

 

WebWhispers – Who Are We?

 

As promised, we will be covering the biographies of our volunteers with a bit of a personal view. In this issue we will start with three who serve on the Board of Directors. We will continue with more in the next issue. I found their stories to be interesting and varied. I hope you enjoy them as much as I enjoy bringing them to you.


Ed Chapman

 

 

Mike Rosenkranz - Member Board of Directors

 

Mike is one of those people that I do not want to even try to edit. As those of you have seen with his comments on the forum his common sense and humor is much to be appreciated.

From an early age, this Brooklyn boy has had a passion for adventure—which may be why I have lived my life by the dictum phrased so beautifully by G.K. Chesterton: "An adventure is an inconvenience rightly considered."

During WWII, the Army Air Corps was only too happy to oblige this passion, sending me to Greenland as a radio operator. Apart from the honor of serving my country—and acquiring the enviable talent of being able to curse in Morse code—my years spent on the frozen tundra of Greenland go a long way toward explaining why I moved to South Florida at the earliest opportunity.

The adventure didn’t end for me on VE day. I devoted my early civilian years to exploring this great country—biking cross-country, hostelling, and hiking the Appalachian Trail. I soon discovered there’s no adventure quite like skiing the wrong trail, climbing the wrong mountain in foggy weather, or walking your bike to the top of the steepest mountain and enjoying a glorious coast down the other side. A subsequent sojourn in Maine brought the almost daily winter adventure of digging my car out of a deep snowdrift; but it also launched me on my greatest adventure, as I met the love of my life in Portland.

Before retiring in 1992, I had worked for Prudential for more than thirty years, at a time when health insurance was not only affordable, but actually managed to insure people.

In January of 1999, I became a lary, and immediately realized that I had been inducted into a community that looked after its own. I served for many years on the board of my local New Voice Club, and as editor of their monthly newsletter. When Dutch called for volunteers, I dipped my toe in the water as a list moderator, but soon took the full plunge—now serving on the Board of Directors and as co-manager of the Forum.

When not out and about, you can find me comfortably ensconced at my computer, or watching television with my wife, while lovingly cradling my iPhone.

Among my greatest adventures and sources of happiness is the fact that I have been married for more than fifty-nine years to the beautiful and patient Sylvia, who apparently loves me despite what she refers to as my distorted sense of humor. I have two daughters—both underpaid teachers—and one grandson, who is about to make me a great-grandfather.

 

Mike Rosenkranz

 

 

Carla Gress - Member Board of Directors

 

Carla serves on the Board of Directors in the only non laryngectomee position allowed by our bylaws. She is not only our professional medical consultant but, as a person with a Doctorate and specializing in Speech Language Therapy, is a tremendous asset to our members and the board.
Carla sent me this information:

Dr. Carla DeLassus Gress, ScD, CCC-SLP, has served on the WebWhispers Board of Directors since 2006.

At the time that she joined WebWhispers in 1997, when there were fewer than 100 members of the email list, Dr. Gress was Manager of the University of California - San Francisco (UCSF) Voice Center, in association with Dr. Mark Singer, MD, FACS, co-developer of the tracheoesophageal puncture (TEP) method of alaryngeal voice restoration.

Prior to her position at UCSF, Carla was a clinical and research speech pathologist at the Massachusetts Eye and Ear Infirmary in Boston, and was an instructor in Otology and Laryngology/Head and Neck Surgery at Harvard Medical School. Her interest in laryngeal cancer and the communication needs of laryngectomees began as a graduate student at St. Louis University, where she graduated with a Bachelor of Science (summa cum laude) in 1977, and a Master of Arts in Communication Disorders in 1978.


After a decade of clinical practice, she received a Doctor of Science (Sc.D) with Distinction in Communication Disorders from Boston University in 1992. During her Doctoral program, she served as a Research Speech Pathologist at the central speech laboratory for the Department of Veterans' Affairs Cooperative Study #268, which addressed the use of induction chemotherapy in combination with radiation as an effective alternative to traditional laryngectomy plus radiation for advanced laryngeal cancer.

Since 2002, Dr. Gress has been in private practice in Virginia. She served as the International Association of Laryngectomees (IAL) Voice Institute Director for three terms (2005-2007), bringing a commitment to offer attendees the most current information and treatment from the leading professionals in laryngectomee rehabilitation. Dr. Gress also serves on the Board of Directors and provides clinical direction to the Foundation for Voice Restoration (www.getvoicing.com), a non-profit organization that is dedicated to the development of improved communication for individuals afflicted by cancer of the larynx through its educational, research, outreach, and support services. She has authored several articles for HeadLines, the WebWhispers Journal, and the IAL News, as well as chapters in medical texts and other scholarly publications.


Carla is married and has eight year old twins, Evan and Emily. Her hobbies include gardening, antiques, genealogy, and Bernese mountain dogs. She can be reached at Carla Gress@hotmail.com.

 

 

Libby Fitzgerald – VP Member Services

 

Libby, as most of you know, will be stepping down from her position this election. She has a long history as an officer with WW and her talent and personality will be missed. Libby sent me this information.


Libby Fitzgerald was born in New York City, grew up in the small town of Somers, NY, about 45 miles north of NY City. After high school, she graduated from State University of New York at Plattsburgh with a degree in Elementary Education and a minor in English.

It was at this college that she met her future husband John. They got married soon after graduation, began teaching and then started their family. They have 2 children, John and Erin and 2 grandchildren, James and Aidan. Libby was active in a professional women's club, AAUW, the local foreign exchange student club (AFS) through the high school, did substitute teaching for many years while her children were growing up and participated in special teaching programs for students needing customized instruction.

When she decided to go back to work full time, there were no permanent jobs available, so Libby decided to try something different. She got her real estate license and started a new career. That was 25 years ago and she's still doing it, although currently on a part time basis.

Cancer came into her life 16 years ago with no warning or expectation since she always lived a healthy lifestyle. She was diagnosed with a rare type cancer with no known cause called Adenoid Cystic Carcinoma (ACC). It's generally slow growing, but persistent and, as of now, there is no cure. It was found in her thyroid and extended to her trachea. She had surgery and radiation in 1993 and regular monitoring.

Five years later, what was thought to be scar tissue turned out to be a recurrence, which then fully involved her larynx. In 1998, she had a laryngectomy and began a new phase of life. She has since had several other recurrences, but keeps fighting back. So far, 11 years as a lary and 16 years as a cancer survivor.

She joined WebWhispers in early 1999 at the recommendation of her SLP, came to her first IAL Convention in 2000 and became actively involved as a member of their Board of Directors, serving until 2007. In 2001, she accepted an appointment as WebWhispers VP Member Services after the death of Bob Hodge when she was asked to finish his term. She was then elected to four consecutive terms in that office. Working with the membership was always of prime importance and being able to help others was a way to pay back all the help she had received. Providing member services, handling correspondence, coordinating the loan closet, distributing thousands of WW brochures, arranging the annual WW dinner during the conventions and participating in making the decisions important to this organization has kept her actively involved up to the present.

In addition to WW and the IAL, she is active in her local lary club, is a peer mentor and does presentations to nurse trainees about laryngectomees. She is also a member of an online support group for her specific type cancer, keeping informed about medical research, helping fund much needed research and giving and receiving support much like that of WW.

Libby likes to cook, garden, travel and spend time with her family and friends.


MORE IN FIRST QUARTER 2010

 


WebWhispers & Friends Cruise

 

WW is sponsoring a 7 Night Alaska “Inside Passage” Cruise on the magnificent Sapphire Princess sailing round trip from Seattle, September 12, 2010. Round-trip from Seattle, this 7-day cruise is the perfect way to experience the best of Alaska's Southeastern ports. Witness glaciers in icy-blue Tracy Arm Fjord. Learn about culture and Native history

Pricing, reservations and details at:
http://webwhispers.org/activities/WW2010AlaskaCruise.asp

Reservations currently available through our Travel Agent:
Peggy Byron, Cruise Vacations
1-205-995-0036, 1-800-844-5785, FAX 1-205-995-2063
Email: Cruise Vacations <peggybyron@bellsouth.net>

 

HeadLines Newsletter:
B’ham:  Pat Sanders,   205-980-8416; pat@choralmusic.com
                                                                                                                                                        
 


For cancer information call 800.ACS.2345 or visit our Web site at www.cancer.org
American Cancer Society in Birmingham:   Nancy.Price@cancer.org