Kirklin Clinic Head & Neck Cancer Support, Birmingham, AL
Pat Sanders, Editor.
Distributed by American Cancer Society
HeadLines to be a Quarterly Newsletter
When I started HeadLines, I never dreamed it would last this long and that I would still be meeting monthly deadlines, 11 years later...or maybe I never dreamed I would last this long! After all, I had just faced two primary cancers with surgery and radiation for each, plus dealing with some side effects However, I survived wonderfully well and I'm not cutting HeadLines back to be less busy but to be more so.
I have mentioned many times my involvement with WebWhispers.org. I have accepted the Presidency of that organization, am still involved with finishing the content of the new website, appointing and working with committees, and am managing editor of the monthly newsletter, Whispers on the Web. You are welcome to join us or come to visit the site where you can find a lot of information accessible to non-members. There is a direct link to newsletters (both HeadLines and Whispers on the Web) from http://webwhispers.org/, WebWhispers home page and please check out our Library.
If you are receiving this by snail mail, it will still be coming that way, just not as often. If you use a computer but don't have one, be sure to check with your public library. Most all of them have free use of computers and perhaps you can check in there. You may even use that access to join WebWhispers and just get your mail that way from a web address.
If you don't use a computer, perhaps your child, relative or a friend can get this online for you. You can also print out these newsletters from the current issue or past issues. They are all on there. I don't want you to miss the good reading when all of these authors write about being a laryngectomee or caring for one. We have a regular monthly column, VoicePoints, in WotW that is a feature written by SLPs or other Medical personnel. You'll learn all about voices from the experts.
Now, on with HeadLines articles.
Orphan in the Storm
Once upon a time there was a very depressed laryngectomee lady who had finally arrived home about 2 weeks after surgery. Everything was an effort. Acceptance of the fact that I would live the rest of my life with a hole in my neck was just beginning. It was overwhelming. Staying in bed or mindlessly watching TV was how I spent my days.
It was March in Richmond Virginia. A time of changeable weather but most of it not pleasant. The rain and dreariness matched my mood. But then my dear neighbor knocked on our door. She was dripping wet with a huge smile on her face and in her arms the ugliest puppy I have ever seen. She had found this puppy in the middle of the street, obviously either lost or abandoned. The puppy was shivering, so covered with fleas we could see them jumping. Talk about a Heinz 57 variety! Maybe Collie, maybe Shepard, maybe razor back, maybe Terrier, probably all of the above. She had a top knot of hair on her head that stood straight up. Her paws were cut and rough as if she had traveled many miles. Her eyes were huge and pleading.
I took her in my arms and that was it. She was mine.
We spent hours washing her to get rid of the fleas and ticks. She never moved. It was as if she knew this needed to be done. We named her Annie after the orphan in the storm. (Not original but it was appropriate.) My husband, Frank, got dog food, I fixed hamburger and she ate until her tummy was so wide we were worried.
We had a cat, Mel, who was king of the household. Mel checked Annie out from stem to stern and pronounced her acceptable. From that day forward Annie thought she also was a cat. Mel still rules a now expanded household, two more cats and Annie.
We got a cage to help housebreak Annie. But when she cried the very first night, you have one guess where she ended up, in bed next to me. She had one accident in the house and never again. So no more cage but lots of cuddling and petting. However, there was the time she chewed up my brand new bifocals when I was sleeping on the couch. Insurance won't cover that unless it is a strange dog. I say, "Strange policy."
So now I had to worry about something else, besides myself and that hole in my neck. Frank, in his wisdom, insisted that I be the one to take her for walks. Doing that was the first time I left the house since we had returned home. It forced me to get dressed, open that door, and accept that I could not hide forever.
On our walks, short in the beginning, Annie loved everything! The smells, the flowers, the weeds, the trash cans, the hill across the street. She would discover something and look back at me as if to say, "See Mom, isn't this great?"
Gradually she would pull me further and further away from my safe space close to the house. We would venture to another street and another one and another one. She, always checking on me to see if I was still ok. There was a time when I fell on some rocks in the park and couldn't get up. Of course I couldn't call for help. Annie ran around me in circles, never leaving me and when another walker was close by, she barked to get his attention. With his help, I was able to get up and hobble home. Annie was leaping and jumping and burst through the front door to find Frank as if to say, "I saved her but, now, she needs you."
Annie grew and grew and grew and grew!!!! She developed the hair like a razor back but on her it was crooked. It curved like a winding road and served to accent the wagging of her tail and her hind end when she went down the stairs. I would laugh and laugh at her uniqueness. That top knot got bigger and higher, making her look as if she had a partial crown on her head. I have accused Frank of trimming it because he thinks it makes her look silly. Of course he denies it but Annie tells me.
Her dependency on us, and especially me, grew. It seems she is as neurotic as her human parents and more sensitive to our moods than any other being, human or animal. Since she has only known me as a lary, she responds to even a whisper when I say her name, even if she is several rooms away. On my down days she is constantly checking on me, pushing my arm to pet her, laying at my feet, even getting my slipper (only one though. She must feel that one is sufficient or that I have to get off my fat behind and get the other one).
There is no way I can ignore her needs or her love. She forces me to snap out of my down moments but she recognizes when I need to just rest. And then, she is on the couch with me. Quite a feat! She is about 80 lbs and we have a small couch but she and I work it out. She sleeps with her head on my hip so she can watch my face. She also decides when it is time for me to get up. A cold nose persistently pushing against your arm or face has a tendency to get you moving. And then she leaps with joy because all is well. Frank is up and so is Mom and everyone is where they should be.
She has selected a place to rest/sleep where she can see everything. She can see down the hall if I go the bathroom, see me in the kitchen, see me go to the living room, see me go to the basement, see if anyone approaches the house and of course can protect us from those dogs walking outside. The cats snuggle up with her even sleeping on her back and legs. When it is meal time for the animals, she actually stands in line behind the cats waiting for them to finish!!!! Multiple food dishes don't work because there are multiple animals. She looks mournfully at me for help but it is not as if she is starving. I tell her patience is a virtue.
She seems to understand about others in need. About a year ago on one of our now infrequent walks (something that needs to change), two small children approached us, each with a pure black kitten with their kitten eyes barely open. The children were crying, "Lady, please take one of these, we found them in the gulley and they will die. Our folks won't let us keep both of them." I said to put them down and let Annie check them out. She nuzzled and licked both of them and then pushed one toward me. I picked that one up and that is how Jessie joined our family of rescued and needy residents, both human and animal.
Annie mothered Jessie for weeks. She would clean him, protect him, and sleep with him. Then Jessie became a teenager and although the relationship changed, it is still special. If we can't find Jessie, he is sleeping next to Annie.
There are times I have nightmares. That is when she somehow sneaks up next to me, puts her head on my pillow, and pushes against me as if to say, between Dad and me, you are ok. If I wake up, she turns her head to see what is happening. If I have been crying, she stands over me until I convince her I am ok. And then with a tremendous sigh as only she can do, she flops heavily back on the bed with her job done. After all, she needs her beauty sleep also! The game of chasing cats through the house can be exhausting!
God works in strange ways. When He sent me Annie, who needed me more than I needed her, I was pulled out of my cocoon of pain and fear. Now I was responsible for a creature who could not survive much longer without intervention from a human. Out of all of the people in our neighborhood, He placed her outside our door. It never occurred to us to send her to a shelter when we had one we could share. It never occurred to us to turn her away.
Are we somehow "special" because we embraced her? Heavens no! She embraced us and we have a special relationship with this animal. Not a day goes by that she does not make me smile. Her acceptance is absolute. Her routine is to walk me to the door with her favorite toy as an offering and to greet me no matter what time I get back with either a toy or a bone with that backside going so fast I worry about her spine!
She is as sensitive to feelings as am I. I try to be as supportive to others as she is of me. Now tell me that she is not a gift from God when I needed it most!
Disclaimer from Vicki:
Not all larys can tolerate animal hair and dander. Check with your doctor. This article in no way minimizes that my husband is mainly responsible for my rehabilitation but Annie runs a close race.
* * * *
A few weeks after my surgery, I went out to play catch with my golden retriever.
When I bent over to pick up the ball, my prosthesis fell out. The dog snatched it, and I found myself chasing him down the road yelling:
"Hey, come back here with my breast!"
- Linda Ellerbee
* * * *
We Are In Charge of the Banquet
By Debi Austin
One of my all time favorite characters is Auntie Mame. No one could deliver the line, "life is a banquet and most poor fools are starving to death!" like Rosalind Russell. And never did that line have more meaning than after I became a laryngectomee.
All of us handle our transition differently; there is no right or wrong. Only what works best for each of us. I grew up in the Los Angeles/Hollywood area. Crazy people are the norm around here. Having a cartoon voice to go with a cartoon body didn't shock anyone I knew. (When I was young I had a medical condition and was given the choice of taking a medicine that would kill me in a few years or get fat. I chose to get old and fat. Some would say 'cranky' fits in there, maybe should be listed first.)
If my size keeps people away from me, they were probably a waste of my time anyway. If my froggy or robot sounding voice irritates people, I am pretty sure my life will continue to be full without them in it. If my stoma is offensive to someone, bless their shallow, ignorant, little hearts and let them keep on walking. We are forced to deal with enough stupidity in our lives without inviting it in the door. Most of the time I have two attitudes. And believe me if you don't like the first one, it is guaranteed you are not going to like the second one.
When I had my surgery, I fell down the rabbit hole into the outer limits of the medical industry. Before I get any hate mail, I have the utmost respect for the competent part of the medical profession. On the other hand, in the past 14 years I have met some in this arena that should be ashamed to say what they do for a living. I have been forced to be a "medical advocate" and I really resent it. Most of the time I am forced to travel with a companion to keep some poorly trained "professional" from killing me. I have to carry a two page medical history so some twit still on training paper does not decide to get his education here.
At a major University hospital in California, a resident told the doctor that I thought I was a total laryngectomy but he knew better because I could talk. Does this instill confidence or what? At the first sign my body is going into any type of trauma, my first reaction is to get everything away from my stoma, jewelry, foam or anything that hides that bad boy. I want them to see it at first glance.
I just changed doctors after a twelve-year relationship. It was very traumatic for me. I was the first patient in his private practice. We were close, even out of the office. His family would visit me when I was in the hospital. Then I had this little run in with his office manager over some billing (I have full coverage and should NEVER get a bill). She overstepped her position. You can defend yourself from a thief or an attacker, but you can never defend yourself from a liar. I have learned over the years not to try; the truth will surface sooner than they think every time. When I brought it up he told me he knew what happened and I just needed to get over it. Hmmm.. I just don't think so. I am not a trusting enough person to allow someone I have no respect for to have any control in my life, if given a choice. With all the grace I could beg or borrow, because that is not a quality I possess, I explained to him that I respected the fact that he paid her to cover his butt and handle his business. But the bottom line is when he bills my insurance company, they are paying him to cover mine and professionally he swore an oath to do so. Anything less is fraud and deceit. (I also have a specialist that teaches medical ethics.) Just a footnote: My new doctor is wonderful!
If you think about it, half the people you come into contact with, you walk away from thinking how lucky you are to be able to walk away from them. Who cares what they think? People who are judgmental? What great thing did they do to judge survival for someone else. When someone develops an opinion from looks, size or sound, do you really want that narrow minded person using your energy in the first place?
All of this rambling gets to one point, they may alter our physical dynamics and they may alter our speech, but they cannot alter our character. We are in charge of how we choose to change and what we become. We can sit in a corner and mourn loss or we can dance in the street and celebrate new beginnings.
The banquet is there, fill your plate!
Dancing the Two-Step
By Sunny Bakken
I moved to Las Vegas in 1997 and was just living the life and working the work when, through a mutual friend, I met Ron Bakken. We met at a local casino "Sam's Town", in June 2000, to listen to some country music. Now, my style of dancing was strictly line dancing, but, when Ron asked me to two-step and put up with my stepping on his boots, it became a match!!
When we met, we both had been married before and had grown children. We both said "Been there, done that, not sure if I want to do it again." Glad the "not sure" was said, because we got married in May of 2001.
Ron had mentioned that he was having some problems with an irritated throat and some ear problems. He went to the doctor and, in July 2000, they did a biopsy. He was diagnosed with cancer on his right false vocal cord. Given his options of radiation or surgery with an unknown outcome, he choose radiation.
Many of you have written about radiation and the effects, during and after. Ron had a total of 70 treatments! In between there were some problems - the swelling, pain, difficulty in swallowing. He finally finished treatment in October and he was not prepared for the after effects. To this day, his saliva has not come back; it's still ropey and thick. Once in awhile, now, he can get a taste of something but, in the beginning, everything tasted bad. This is a man who loves his sweets, mainly chocolate and pastries, or a good sandwich. With no saliva increase, nothing breaks down so these things have gone by the way side.
We heard so many stories of having radiation, then having a recurrence of cancer. Not going to get into the pros and cons, but Ron's cancer came back.
In March 2003, his ENT told him the only option was having a laryngectomy. He explained the procedure. Questions were asked and he answered. I must have had a look of fear because the Doc said "Don't worry, you can handle it". Ok, if he says I can, then that's what I'll do!!
After hearing that news, we headed to Sam's Town for some lunch. I think we were shell-shocked! What are the chances of seeing, as we were walking thru the casino, a gentleman walking towards us with an EL around his neck. We both looked at him and then looked at each other. Ron said, "I'm going to talk to him". This gentleman had been a laryngectomee for many years and he told Ron there will be some rough times but life doesn't end with laryngectomy surgery!
Ron's surgery was April 2003. All went well and, because I was working full time, home health came in to make sure things were ok. I bugged the hospital staff about taking the canula out and cleaning, making sure I got it back in correctly. It was daunting, but you do what you gotta do!
During this time, we realized that education of hospital staff is a concern. One of Ron's visits was from a SLP, Jennie. (SLP? What is that?). With the patience of a saint, she answered a lot of questions. Helped Ron with his EL (EL? What is that? ). She was also instrumental in helping a group of laryngectomees form the Still Talking Club of Las Vegas.
We have moved now and we love living in Southern Oregon. Basically we are in the country with the company of wild turkeys, deer, jackrabbits that are bigger than our dog, and other assorted wild life that we can hear but can't see - which is probably a good thing!!
I lost a friend to cancer who was like a sister to me. We went all the way back to high school in Hawaii. One of her sayings was, "This too shall pass". Ron still has problems eating so he is on a nutritional drink. During the winter months, soups are norm. I love to cook, so finding something that will agree and work is always a challenge. When things happen, always we think, "This too shall pass".
We had so many questions that I began searching on the computer. Aha!! I found WebWhispers!! What an answer to a prayer. We found so much information from the site that both of us both signed up as members. Many of you were guided to WW by a Doctor or a SLP; some are like us, were just searching for answers. Currently I have a "tiny" part time job and I volunteer with WebWhispers.
We were fortunate that we went to the IAL in Anaheim. We put faces to names and met some really great people. We chatted with Dutch during the reception and with Pat at the WebWhispers table in the vendor area.
When Dutch announced that he was again with cancer and the diagnosis was not good, it was a blow to everyone. In the struggle to keep WW running for the future, an email was sent to the list asking for help with setting up a new web site for WW. I sent Pat an email and let her know that I would be more that willing to help with anything needed. She accepted and let me know when it was time. Things moved right along and currently I am entering/changing member information in the master database. With all the great people/volunteers WebWhispers has, it will be such a legacy to Dutch. I'm very proud to be a part of a group of great people.
One of the greatest things about Ron is he never lost his way, never got depressed. He always fights the fight. Oh, and he makes me laugh!! I'm glad I learned the two-step.
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; firstname.lastname@example.org
Kirklin Clinic Otolaryngology : 205-801-8456 FAX
Glenn E. Peters, M.D. Glenn.Peters@ccc.uab.edu
William Carroll, M.D. email@example.com
Nancy Lewis McColloch, Speech Pathologist ; 205-801-8460; firstname.lastname@example.org
For cancer information call 800.ACS.2345 or visit our Web site at www.cancer.org
American Cancer Society in Birmingham: email@example.com