HEADLINES
Pat Sanders, Editor
Kirklin Clinic Head & Neck Cancer Support Group, Birmingham, AL
distributed by American Cancer Society
April, 2001

How I Found Home On The Internet

by Bob Hodge BHodge8937@aol.com

Like so many others that I have met and heard about since becoming a laryngectomee, my first indication of a problem was when my voice started getting weaker and weaker. It was in the early part of 1998 and I thought it was just my allergies acting up as they have always done at that time of year. Since it didn't clear up after a couple of visits with my doctor, he suggested I contact an Ear, Nose and Throat specialist, who did not find anything wrong with me even after several appointments, a biopsy, and CT Scan. In the meantime, my voice continued to get weaker and I had no idea what was causing it.

I live on a golf course and love to play golf with a Senior League in the area which includes Raleigh, Durham and Chapel Hill, North Carolina. You might call it fate that it was after a round of golf at one of the clubs in our league that I changed the direction I was going and found out what was making my voice so weak. There are usually about 100 golfers who play in the Senior League Events. It just happened that one of the individuals in our foursome was a retired doctor from Duke Medical Center. Well, after spending four hours together on the golf course and lunch afterwards, he suggested that I needed to go see a Dr. Richard Scher, Assistant Professor, Division of Otolaryngology-Head and Neck Surgery at Duke University Medical Center. When I returned home, I immediately looked up Duke and this doctor on the Internet. I read about him and his background and called the next day for an appointment.

Dr. Scher did another biopsy and at first could not find anything wrong, but after he reviewed the CT Scan and some of the other tests, he said I had a tumor on my vocal cords that had to be removed. At that time, he thought there was a good possibility that I would still be able to talk after the operation. Unfortunately, that was not to be the case and in October 1998, I had a total laryngectomy. After 33 radiation treatments, I used a Cooper-Rand to talk with for almost a year. Dr. Scher had recommended a TEP operation after my radiation, but it was in November 1999 before I finally got my TEP and I much prefer this method of talking. I have an indwelling prosthesis and have it changed by my SLP at Duke every 2-3 months and am working toward extending the length of time between those changes.

For laryngectomees, it can be a frustrating and lonely period after your operation. You can read the literature, books, articles, and review all the videos on the best way to talk again and things you need to cope with life as a laryngectomee. They all seem to make sense and then, if you are lucky, you find a support group meeting with other laryngectomees and you see how others are coping. You see all the different ways they are talking - TEP, EL, and Esophageal Speech. You get on the Internet and start looking for any information you can find on the subject. Then, all of a sudden, you find a site that is full of current information, with lots of people who have had the operation. The site is WebWhispers. I don’t remember what search engine I was using when WebWhispers appeared on my screen. All I knew was that I had struck gold. It had everything and more than I ever expected to find, and I still had dozens of questions that I wanted answered. I joined immediately.

The next big event in my life as a laryngectomee and WebWhispers member was attending the IAL Convention in Nashville in August 2000. I was able to meet in person so many other members that I had been communicating with for over a year including Dutch Helms, fellow laryngectomee and founder of WebWhispers. I was very impressed with the overall convention and the exhibits by the suppliers. When you are with a group of 500 who are laryngectomees, their spouses and/or caregivers, you really see how each and everyone has found their own way of living life to the fullest as a laryngectomee. I am looking forward to the IAL Convention in Myrtle Beach, SC in 2001. It will be an opportunity to renew friendships that I have made the last couple of years and to meet new members.

I was elected Secretary of WebWhispers in 2000 and one of my goals has been to have a professionally printed WebWhispers Brochure that highlights the benefits and the vast amount of information for laryngectomees, available at their fingertips, on the WebWhispers site. This can be distributed to doctors, SLPs, ENTs, caregivers, friends, and others in the laryngectomy community as well as given to each patient before or after their treatment. We want to let them know we have outstanding information and very caring members just waiting to offer their assistance. A local North Carolina printer has generously agreed to print the brochure at "no expense" to WebWhispers. He knows all about cancer, because he lost his wife to cancer at a very young age.

WebWhispers was there when I needed it most, and it continues to be my daily inspiration. It truly is a lifeline for a laryngectomee.

In this mail out edition of HeadLines, there will be a copy of the new brochure describing the Internet Support Group called WebWhispers. Show it to your doctor or your speech-language therapist. Let them know that they and their patients are welcome. If and when you have access to a computer and being on line, please check it out and join us.

If you need some more brochures, please let us know.
Bob Hodge WebWhispers - VP Member Services
BHodge8937@aol.com
Pat Sanders WebWhispers - VP Web Information pat@choralmusic.com

My Caregiver Needs Care by Pat Sanders

I thought I was used to being around people who have cancer. I consult with people before surgery for laryngeal cancer, call on them in the hospital and, after almost 6 years since my own laryngectomy, I hardly ever cry anymore about dealing with cancer as I used to do after I left some patients. It wasn't pity; it was empathy. I knew what they were going through and I wanted to do more but the limits were there on how helpful we could be. We can show them that there is a life after laryngectomy, give them advice on what to do to make any transition easier, help them to find other support and offer to be there to answer questions. But, seldom do I cry anymore about cancer.

Then, less than 10 days ago as I am writing on Valentine's day, I received an email from my friend and caregiver, Carolyn, who had been here for me almost every time I had a biopsy or surgical procedure. She was the one who arrived from her home, 100 miles away, the day I came home from the hospital after my laryngectomy and she stayed that first critical "at home" week with me. She even wrote an article for HeadLines later about how frightened she had been, afraid she would do something wrong but she came here anyway. Like most of us, she had never been around a laryngectomee and had no idea of what to do.

The email she wrote was cheery and mentioned casually that she was going to a new ob-gyn since she was not convinced that her long time GP had investigated some symptoms she had complained about at her yearly checkup in October.. Then, in the next email, after the visit, the doctor decided to do an ultra sound to check on something she suspected, and found a 4cm tumor in the area of one of the ovaries. Blood was taken for a CA125, which might help determine what this was. The discussion was that the ovaries had to come out along with the tumor, regardless of the test results, which later showed a slight elevation. An appointment was made for the next Monday for a scan, and on Tuesday, the word came that there was a 13cm tumor on the other side, in addition to the original one and an appointment would be made at UAB (my town, not hers), not just to see the specialist in the morning of the next Monday, but to show up prepared for surgery that afternoon, 12 days after the first visit. Ovarian cancer was suspected.

I told her that she had been there and cared for me, now it was my turn.

She is surprised about her attitude and gives credit to being with me through two cancers that she finds herself busy and very calm, although spells of being teary eyed come and go. She worries that this would take me back. I reassured her that it wouldn't, but mind and memory aren't always so easily controlled. I remember how hesitant my first ENT was to say the word cancer, and how often others avoided using it, yet, how easily it falls off of my tongue now after dealing with it for 7 years. It is hard to think that there was a time when it wasn't part of my daily vocabulary and my daily life.

When Dr. Peters told me, immediately after biopsy, that I had to have a complete laryngectomy, it was set up for eight days later. I was not being brave, just busy, doing what Carolyn is doing, getting ready for whatever I needed before and after the surgery. Doing things that needed to have already been done when I came home with no voice. I called the telephone company to find out about their speaking help, which I never needed, but it put my mind at rest to know there was such help available. I notified the fire and police departments that I wouldn't be able to talk if I dialed 911, made lists of people to notify and another list for each of those to call, like a pyramid of notification, and made more lists of people who offered help and what they offered. I shopped for everything I could think of in the way of groceries and household supplies. I made new tapes for the answering machine for present and future use. My son ordered a computer and I set up a table for the computer so it would be ready for my new method of communication. Got everything physically in order that I could think of. Mentally, I thought of the coming surgery as getting rid of something undesirable and I was anxious for the day to come. I didn't want that cancer and I wanted it out of my body! I was ready, even eager, to get the surgery over and done with so I could get past the dread of what was coming and on with the business of living.

Carolyn is getting the physical and practical things cared for, getting someone to care for her cat, the mail, running to the dentist, by the bank, to the Red Cross, where she works as a disaster volunteer. Her time is used up and her emotional attitude is excellent and she is calm. Knowing that she finally has a direction to take and a road to follow that will be directed by experts, her mind is at rest. She is putting herself in their hands, for now.

Another thing we talked about was the change in attitude. She asked me why she was seeing things so differently. I felt that same change more with my breast cancer because it came before my throat cancer. It was stunning! Almost shocking, the difference in the way I felt about life and everything around me. I remember one friend said something like...you can't really say 'that' (whatever 'that' was?). I do remember my response using that odd word that people eased around. "Yes, I can, I have CANCER and I can say or do anything. I don't have time to pussyfoot around."

Carolyn's occasional bouts of tears remind me that I cried at the drop of a hat. Wave the American flag and the tears rolled. But these were not unhappy feelings, I just FELT everything. I SAW everything sharply, like Spring flowers, the view from my house, the sleeping white cat curled up in the sunshine, so bright I could hardly look at her. Talk about learning to smell the roses! I did not slow down, I just lived in a more aware world. Everything I did was colored by cancer.

I hope my friend can find a good support group, as I did, and, just yesterday, she wrote that a survivor of ovarian cancer had called her. The caller told how she got through it and that she had the same doctor that Carolyn is being sent to and loved him. She answered questions. What an uplift for Carolyn and I felt immediately better when she told me. It made me realize all over again how much we help others by simply being there when they are in need of knowledge and support.

On our email lists and in our local support group, we talk about the way that cancer changed our lives and many of us say we would not go back and be the person we were before. We didn't choose it, but we wouldn't change it.

And now, we wait.

Surgery is over and the doctor has come and gone leaving us in shock, happily so. We were so primed by all that had gone before, that it is just soaking in that he said "benign". A few days later the path report came back with confirmation, no evidence of cancer. All of a sudden, my friend had her life back.

Carolyn came here from the hospital and stayed 9 days, during which we talked a lot. She asked that I not let her forget the feelings she had of how precious everything is when you think you will lose it. I think we all need a reminder every now and then.