May 2008

 


 

 

Name Of Column Author Title Article Type
News Views Pat Sanders Blessed Are The Volunteers News & Events
VoicePoints Susan Reeves, MEd CCC/SLP Don't Forget Person Education-Med
Web Whispers Columnist Sunny Bakken Dancing With Ron-Part2 Experiences
Guest Columnist Marona Hewitt Cruising Larys Experiences
Practically Speaking Elizabeth Finchem The Perpetual Patient Experiences
A Scottish Accent Roaslie Macrae Spring Fever Ramblings With Experiences
Mailbox Jack Henslee Voices Restored-Costa Rica Experiences
New Members Listing Welcome News & Events

 

 

 

 

Blessed are the Volunteers

 

Last year, on the WW Cruise in March, I met Vicki and Gary Metz. They are a delightful, friendly, couple from Milwaukee, WI. Vicki is active in the local group there. I had exchanged emails a few times with Vicki when she wrote to the WW list and was delighted to have the chance to visit in the buffet section of the cruise ship over "food" or to sit and talk over coffee and, among other things, we chatted about WW.

Then Gary mentioned he was planning to retire in July and wanted to do some volunteer work in several areas. Of course, that sat me up straight and I zoomed in like a birddog, as I said, "We will be happy to have you volunteer with us and will find something you like to do." Vicki was also planning to retire, maybe 6 months after Gary but had lots of plans for fixing up and cleaning out before she would be ready. We were not aware at that time but she also had another surgery to endure later last year. They were aware that they had a big wedding coming up for one of their daughters in September and there would be plenty to do until that was done.

We now have them both as volunteers doing totally different jobs. Gary has been working since October on the new project of preparing Contents for the Whispers on the Web issues and has just finished 5 years of those. Len Librizzi placed these at the top of each issue and then put the 5 years together in an Index of the Contents found at:
http://webwhispers.org/news/WotWIndex.asp
You can look through the contents, select an article you wish to read, and choose either the HTML or PDF version.

We have more to go for the Journal and the original WW newsletter. We are taking a break before going back to that. Gary is a precise and conscientious worker and it has been a pleasure working with him. We'll be back to finish this project.

Vicki had a good bit of knowledge about laryngectomees, in addition to being an RN, working in a doctor's office. All of this knowledge, and her ability to put things together, was to our benefit. So we got her set up the first of the year with doing a never ending project of adding information to the library. No rush, I told her, just pick a section or subject and improve it by going back through the archives of the WW list and picking out points we needed to add to that section.

Vicki started with the section Stoma Care and chose the sub-section of Stoma Care - Do's and Don'ts (Humidity). She learned to go into the archives, search for a topic, collect and get them in order. We did some editing but have a huge number of contributions in this section now:
http://webwhispers.org/library/StomaCare-DosDonts.asp

The next project was under Possible Problems, Acid Reflux:
http://webwhispers.org/library/AcidReflux.asp
We now have a couple of good sites on the web to consult, a short article and, again, choices from advice on the list.

These two volunteers were such a delight to find on the last cruise that I can only hope good things for this year, as I pack to get ready to go.

Thanks to Gary and Vicki and their projects. Please use them...they are for you.

 

Enjoy,
Pat W Sanders
WebWhispers President
 

 

 

VoicePoints written by professionals [© 2008 Lisa Proper]

Coordinated by Lisa Proper, MS-CCC-SLP, BC-NCD-A, BRS-S (LisaMProper@comcast.net)

 


Don't Forget the Person While Working on Speech

By: Susan Reeves, M. Ed. CCC/SLP

 

 

For a person who has had their voice box removed, life overall is now different. There are many aspects to this type of surgery that need to be considered, beyond the cancer and beyond the voice loss of the patient. The family, along with the patient, will now need to make many daily adjustments as they, together, learn new ways to accomplish familiar tasks.

Many years ago, I began my journey working with this population by opening the doors for a Lost Chord Club meeting once a month. I didn't have any experience working with laryngectomized individuals and their families but then no one on my staff had much more to offer. I was new on the staff so setting up the support club meetings was something I readily volunteered to do. In our new club, we had only one esophageal speaker, one very well trained TEP speaker and about 4 artificial larynx speakers. I began by learning all I could from the patients and their families and began to realize how very much their lives were impacted due to laryngeal cancer.

It was not until a homeless man came into my clinic with fluid dripping from his TEP that I was truly faced with the realization that I needed more information in order to serve these individuals well. I was in a situation clinically that I would not wish on anyone. This was about 26 years ago and TEP's were not as common as they are now. I only knew of the one TEP patient, in our Lost Chords Club, who was a born teacher and had shared lots of information with me, but I had never placed a prosthesis in a stoma. I hadn't even gotten a good look into a stoma. I had been the "Holly Hostess" of the club, but that all changed when this man walked into my life. I knew that if I sent him to the emergency room, that no one there would know what this white thing was in his neck and it would, more than likely, be pulled out, while the space left behind would subsequently close up.

I knew that I needed to get in touch with someone, right away, who knew more about this procedure so I called his VA center in San Antonio, and they graciously walked me through how to take out the prosthesis and how to place a red rubber catheter into the fistula so that the fistula would not close. I have always credited this man with my entrance into this field. Six weeks after returning from San Antonio, he brought me a small wicker basket which contained two safety pins and one penny. This remains one of my most treasured possessions. Mr. C wrote on a tablet in conjunction with using his Cooper Rand, "thank you, "and quietly left my office. It was right after he left that I went directly into my supervisor's office and told him I needed more training with this population or I would not be opening any doors for the support club.

I went to my first IAL Voice Institute meeting that year and have been involved in alaryngeal rehabilitation services through the IAL and the Texas Laryngectomee Association, Mexico Voice Institute, and my local club for many years, but it all started with the realization that I needed more knowledge. At my first IAL Voice Institute meeting. I was astounded by the amount of information that I had lacked. I thought I was going to learn about the TEP and found that I not only had been short of the speech end of training, but I had been short on the humanity side of treating this population. People just have no idea, as I did not, what all is involved, so I am always supportive of training meetings for newcomers. I have been there. With this new knowledge I was anxious to start sharing what I had learned, but the referral process for getting patients to our clinic was another obstacle, so we had to establish an easier way for the physician's office to remember what we had to offer.

Getting the patients to our center became my next focal point. I had been getting referrals to our clinic by way of "someone heard about us from his uncle, who met someone at a garage sale." Literally, the few patients who came to my neck of the woods never made it to our doors, so I decided to make it very easy for the local doctors to refer to us. I helped to set up a protocol for referrals and modeled it from the protocols of breast cancer patients, as there were many more of those patients than there were of laryngectomized patients.

So West Texas Rehab Center in San Angelo, Texas set up a protocol for patients so that our physicians need make only one phone call for a variety of services. The physician's phone call sets many wheels in motion, including:

* Preoperative visit, when appropriate, with a speech pathologist as well as a fellow laryngectomee, including spouses or family member.
* Phone call to the American Cancer Society, who were helpful with literature and information for the patient and family.

After the surgery, that same phone call ensures:

* Followup at the hospital with a speech pathologist and trained laryngectomee visitor and trained spouse visitor. Typically the initial visit is the same day of the surgery in ICU. The appointment for the patient is given in the preoperative visit, if possible. This family will be looking for you so it is imperative to them that you be there "on time".
* Use of the WTRC loan closet, whereby a patient or hospital can borrow an artificial larynx in order to give the patient a variety of devices to chose from before purchasing one in the hospital.
* Followup outpatient rehabilitation services, including: speech therapy, occupational or physical therapy screening (to rule out need for head and neck mobility issues), psychological or social work screening (there are lots of financial issues, insurance issues, emotional issues which professional staff members need to assist with.)
* Referral to the Concho Valley Lost Chords Club Meeting, which meets monthly. This is typically a potluck luncheon, where well trained staff members jump in with needed support, questions and answers for the new patient and their family members. This type of support is sometimes one of the parts of our protocol. Sharing the common experiences, knowing that you are not the "only" person in the world with the same concerns/questions/etc., is very powerful in working towards the healing process for the overall health and well being of the patient.

Once all the evaluations are completed and the patient is coming in for therapy, there are typically many issues which need to be addressed with the patient that don't seem to be in anyone's typical, standard area of expertise. Who addresses body changes for the newly laryngectomized individual? Who discusses with the spouse why their loved one is now "not snoring". From personal experience in working with these families the answer is : whoever has the information should be sharing it, but when you are building a "team approach", those with information need to ensure that the individuals they are pulling into the team, truly, have good information and insight into the problem areas the patients are facing.

For example: When I first started building a team approach at WTRC many years ago, I had a counselor, who adamantly did not want to work with this population and claimed a lack of time. I pushed for the psychological issues to be addressed and won that battle, or at least I thought I won. After the first patient was referred for these services, the counselor came to me with an initial assessment, saying, " This is like I thought, a total waste of my time. I can't even understand the patient and half the time she sat in my office, coughing and spitting stuff out of her neck, so I could not even find out what her problems were." I realized that the degree and title alone does not mean that this is the right team member. I had made that mistake and, although I pushed for those services to be included, the patient was not getting what I had intended.

We, as professional staff members, who have information about this population owe it to the future speech pathologists, future laryngectomees, and family members to train and, at the least, check to see what the level of information is available, before making referrals and building teams. This team building is a process and sometimes you are learning as you go, so recognize that you have things to learn, then seek accurate information.

There are many areas where they offer state or regional meetings for laryngectomees, their families, and the professionals treating this population, as well as the International Association of Laryngectomees, where all of us now treating have gained our roots. Webwhispers.org is another source of information. It is an online support group, which helps many families every day.

We have many options for gaining more information on building teams for the care and treatment of the newly laryngectomized person. In doing so, remember, you are not treating just speech. You are helping a person to heal from the inside out. You are helping a family to grow through this process....Speech is only one component on that journey. Don't miss the " person" while you are working on the communication.

 

 

 


 

SAYING GOODBYE
Part 2, Dancing with Ron

MORE CANCER AND WORKING WITH HOSPICE

By Sunny Bakken

 


Ron was very lucky getting the doctors he did here in Oregon. The care here is tremendous, a smaller city type of mentality I think. Scans were once again set up as routine. His ENT, Oncologist, Primary - all of them caring. All good.

Nov 2006 - There is a different problem, not to do with cancer. Ron has a blocked femoral artery in his left leg. A bypass is done in December but he didn't get the full use of the leg back. The doctor said, "The bypass could be sitting on a nerve, or a nerve was nicked." This is the only doctor who disappointed us. Ron is walking with a cane and he does ok with it, but it upsets him.

Jan 2007 - Ron can't lift his left arm higher than chest height, some weakness, numbness, in his fingers and the back of his neck is bothering him. CT scan, MRI done to confirm. The cancer is back, now on C2-C3, back of his neck. Chemo will not work on this type of cancer - the same type as before. In the end, the chemo didn't clear up the lung, just vanished for a bit to return. We understand what's next. A Neurosurgeon is recommended, authorizations rushed, and surgery is scheduled for February 8th. Ron never hesitated.

Feb 2007 - Surgery is done and Sue is waiting with me. The surgeon says the tumor looked like someone had poured plastic and created a dome. No way to get it all without possible paralysis. I can't and won't fall apart. I'm seeing Ron in his room soon. He learns of the surgery and the damn stuff still stuck to his spine. He says, "Well, just gotta fight again."

Radiation can be done in this area, so it's set up, 32 treatments. His oncologist says, "You should have a good summer, we'll see what we have in the Fall. Take a vacation, have some fun."

End of May 2007 - Ron's hips are bothering him. He goes from using the cane to the walker. Daily it seems worse. The oncologist sets up an MRI, two hours, twilight sleep, full spine. Next day, we are told the cancer has now spread down his spine, into the nerve endings at the end of the spine called the Horse Tail.

Meetings are set, the oncologist, the radiologist. The best way to attack this is to radiate the whole spine. Ron never wavers, he says "Let's do it" but when we get home, all of this hits us like a semi-truck. If the radiation didn't work on the neck and it spread - will this round work? We have no answers, but to not try is to quit. Quitting is not in Ron's vocabulary. Radiation is started in mid June.

Pain medication and medical steroids are given but I can still see the pain. By the second week, he became totally disoriented, sleeping too much, talking about strange things, ended up in the hospital again, this time in a diabetic coma. He is not a diabetic and this spike in BS to 800 was caused by the steroids.

This episode also caused his weaker left leg to become unusable. PT came to show me how to transfer him from a bed to a wheelchair. Four days later, I can take him home. During these days, I was informing Sue and Gary what was going on. They rigged a ramp to get him into the house, had gone to a loan closet to get a wheelchair. Sue told the owner of the park, "We don't have time to draw up pictures but they need a ramp. Gary is buying material as we speak and he is starting this afternoon when it's cooler."

July 5, 2007 - I pull up in front of the house, there is lumber piled and a rigged ramp that got him into the house. Gary tells Ron he'll be back when it's cooler and start on the ramp. Later, I go out and see not only Gary but the owner of the park and three other neighbors working to get this ramp done. A 40' ramp was done in three days! Unbelivable! We are given a gift once again.

Ron's health insurance ( Retired Navy ) assigned a case worker, a great help, and we got wheels going on various things we needed. Then, she mentioned Hospice and we had decisions to make together. Finally, toward the end of July we met with a Hospice InTake Nurse. She explained that Hospice is not just for the final stages, but anytime when a prognosis is bad. We decided that having a nurse coming by to be sure things were going good would be a help. We were told that if Ron's condition turned around, we could drop the Hospice program - always be able to go back. We were thinking, things will turn. Ron went on Hospice the end of July. At first as they introduce the "team" we had a lot of visits- chaplain, social worker, the nurse, phone calls etc. When things finally settled down, Ron had a great and wonderful nurse -Lorraine.

The transferring from the bed to the chair got easier. Bed baths became routine as Ron could still sit up, still use his left and right arms/hands and his right leg was still strong. We spent days sitting in the sun, taking walks around the community. At one point, we got an appointment at the VA facility. Because of Ron's wonderful health insurance, TriCare, he never used the VA in the past. The doc he saw had already had the information from Hospice and doctors. This visit was basically to move along with getting a power chair. This would give Ron independence, plus he would get a kick out of it. He loved this chair.

Sep 2007 - transferring Ron is getting harder, we can see some weakness. A Hoyle lift was delivered, it actually looked like something you would hoist a car engine with. Ron felt as if his lungs were being crushed when being pulled up. Lorraine had mentioned a hospital bed a couple of times in the past and it was time. Ron was hesitant but he trusted Lorraine, who always said to me, "He's such a fighter". A bed was brought in, set it up in the living room. Ron's point was why in a bedroom? I totally agreed so he is out here all the time.

Gradually the strength in Ron's left hand was going and then gone. Almost daily, I could see things going. No longer able to control the TV remote, having a hard time holding his EL up to his neck to speak, his right leg was getting spastic. When I could no longer transfer him from the bed to the chair, Sue and Gary were there every morning and night to help with this and during the evening Sue would sit on one side of Ron, Gary on the other while I fixed sheets or even managed to change them. This couple gave up so much to help us, standing dinner dates, meetings and lots of daughter and grandkids visits. Ron always said he had an angel sitting on his shoulder. I believe he was given two more angels for his shoulders in Sue and Gary.

Everytime Lorraine came, she would tell me later, "I don't know how Ron is doing this." Transfers were getting dangerous for both Ron and us, Lorraine was checking into a different kind of lift that would work with a hospital bed. She also worried about pneumonia.

Sunday 11/18 Ron was very agitated. He was seeing people waiting for him, he's never met my mom, but she was waiting. I asked if she had a drink and cigarette and if his mom had her glass of brandy - he smiled. He asked for a picture of Christ, gospel music. A call to Sue, she hustles again - and brings down what he's asked for. He says "Where is the Christmas tree?". He finally went to sleep and when he woke up he said " I don't know what that was about". I asked him if he wanted the tree set up, he smiled and said there was no need. I was outside with the dog, Ron told Sue he was going to die but he wasn't scared anymore. He asked her to pray for him.

Mid-week, Ron is calm, pain patches are working and doses of morphine are keeping him pain free. He's sleeping a lot. Lorraine visits, takes his vitals, oxygen is going down, bp is holding it's own. Every time she thinks Ron is not going to make it another day, he proves her wrong. She tells me that because he is a laryngectomy, he probably won't have the fluid build up that can cause a "death rattle". Since he breathes straight into his lungs, his body won't have to deal with the moisture from the nose and mouth.

He has some secretions in his stoma and I use the suction. He has been able to cough and move the secretions but now I have to irrigate the area to get a reflex to I can clear the secretions with the machine. He sleeps.

Lorraine comes by, talks to Ron, takes vitals, the heart is working harder to provide oxygen. She'll be by on Friday with another patch. He sleeps. Friday, a new patch is put on, vitals are lower, Ron's breathing has changed again. More time between deep breaths, then several short breaths.

I'm not sleeping much. Since the hospital bed was brought in, I had been sleeping on a roll away bed. Now I grab a blanket and curl up on the couch, listening. The dog has taken to hanging out under the bed during the day. They say animals know. Sue and Gary keep a vigil with me, every morning and evening. Sunday, Lorraine, on her day off, stops by to put another patch on, she is making sure he has no pain. Vitals are at bottom. Ron is moving his eyebrows and I see his lips twitch. Is he talking to people waiting? Are they telling him it's ok?

I talk to him constantly, "Bandit and I will do fine, I'm staying in the house you picked out and one we made a home." I tell him I'm going to miss him like hell and back, he is my love and will always be with me.

Monday 11/26/07- I've not slept much during the night. I listen to Ron's breathing and it has changed once again. Much more shallow, a longer time between breaths. I'm working on a blanket, listening, listening. Ron takes a deep breath, exhales. I wait, wait, wait. 7:45 a.m and my friend, my love, my husband, my world, is now out of pain.

 

 

 

 

 

Cruising Laryngectomees on the Loose

By Marona Hewitt

 

So you have a surgery that "shows." So you have a different way of talking, breathing and maybe even eating, and you are kind of sensitive about being around strangers. So you don't want to eat at a table with them and have them stare at you or worse, look away when you talk. So it takes you longer to eat and sometimes you cough and have to leave the table. These are the reasons given by laryngectomees who stay at home instead of going on vacations.

 

That doesn't mean you can't have fun with others. There are a bunch of laryngectomees that go on a cruise together each year and they don't let their surgery that "shows", slow them down. They eat together; hang out together, and even party hardy together. How do I know? I go with them. They are the best bunch of travelers I know.

You've finished your treatments, the surgery is over, and your doctor says go on, get out of here and live your life. The doctor is right. You need some new places to go where you haven't been before and the best way to do it is from a cruise ship. You get to the ship, unpack once, and your room, bed, and medical supplies go right with you from port to port. Tired? Go to your cabin and crash or sit in a deck chair and watch the world go by. Your traveling companions understand because they all talk, breathe, eat and have been where you are. No hassles, no embarrassment, no explaining, no stares, and lots of fun people that are your new friends. What more could you ask for? Well, there is the food! Choices like you have never seen, everything from soups, salads, vegetables, meats and if you need soft foods, they are there, even special diets. Then there are the desserts. Oh, my! All you can eat, plenty to do and see and be with people you know every night around the dinner table. On shipboard, there is food available so often that you can just eat a little each time. Coffee and tea, anytime. Not quite strong enough to keep going all day? Then, have your breakfast, lunch or dinner delivered to your room or go to the buffet and have a bowl of soup.

I know just the place to send you to find out about this group. Go to WebWhispers.org and click on Activities and follow to WW Cruises to the current year or the next year to see what, where, and when the cruise is going. See what ports you will be visiting. Then look at the list of cruisers. The cruise for 2008 involves over 80 people! When this article is published, we will be at sea!

I know what a fun group of people go on these cruises for I have been on several of them. I go as a "friend" since I am good friends with a lary. Was there during all those early stages. We have been to Alaska, the Panama Canal, Caribbean, and now to Acapulco onward up the Pacific coast to Seattle.

"Wow, how can you afford to do it?" so many people ask me.
Well, WW has a great coordinator (Pat Sanders) and terrific travel agent (Peggy Byron of Cruise Vacations), who get the best for your money. You get on the list early by paying a token amount down to hold a cabin. Both of these gals watch out for you and get you the best deal possible. Need a handicapped room, want to be close to the elevators, want a balcony to sit on with your glass of wine and want early dinner seating? A cocktail party with the whole group. One or two meetings with speakers or clinics to learn as you sail. These two gals work hard to get your needs filled.

Afraid you'll have an emergency and need to cancel? There is insurance for that and cancellations happen for different reasons but you'll be surprised at how many people keep coming back for repeat cruises. Don't miss out on an opportunity for a great time with other people who have a "surgery that shows." Grab a friend, a spouse, your children maybe even a grandchild and make reservations to cruise with us. Then start dreaming about the trip and all the things you will do, what to pack, and how much weight you will need to lose so you can eat all you want, and all the fun and exciting people you will meet. Get out there and be a cruising laryngectomee on the loose.

Look for me at the WebWhispers cocktail party. I'm the blonde, overweight gal on the arm of an older baldheaded man. He looks a little like Dick Cheney. We'll be with a lary or two laughing and having a ball! See ya there next year!

 

 

 

 

 

The Perpetual Patient

 

This is the nickname I use to describe those who buy into the idea that a laryngectomy is the end of life, and there is no light at the end of the tunnel.  We all face some scary decisions that take courage. I love the title, “Feel the Fear, and Do it Anyway”, by Susan Jeffers, Ph.D.  It often comes to mind when I recognize that I am fearful of a new experience.  I don’t like the feeling of being afraid of anything.  My usual behavior is to research so my action will be a calculated risk.

Being the practical person that I am…most of the time, it was important for me to have a time frame for my recovery from laryngectomy, radiation and speech therapy.  I was given an estimated length of stay in the hospital.  When I was told it would take several weeks to get in the daily radiation sessions, I made it clear that we would have to be finished no later than December 23rd.  I explained that I had planned a two week trip to Florida for all eight of my family and rented a beach house as part of the arrangements.  We were leaving Dec. 26th.   My speech pathologist was happy that I was taking time off to heal and relax so she and I could resume my esophageal speech training by the end of January.

The biggie that registered for me, as I’m certain it does for so many, is “if you survive 5 yrs., you’ll be out of the woods”.  As so many of us are, I was grateful to be able to check off the years.  At first it was 6 month check-ups, since I lived 500 miles east of Mayo Clinic. Gradually we were able to go to an annual check up.  It was a great day when I could tell my beloved ENT that the next time I saw him at Mayo Clinic, we would say hello in the hallway. I had officially graduated from the “patient” status in his mind and mine.  I know just how lucky I am that I could be so forthright about it with him. I told him, “Our next conversation will be in the hallway…at no charge.”  He understood, and had a good laugh about it.

He had come to know me well, and understood that I made it my business to seek my own path to total rehabilitation.  They were many professionals and seasoned laryngectomees along the way to help guide me as I made my choices.  I considered and rejected the shower collar and TEP in 1979.  The stoma “bibs” were left on the table.  All interesting information, but nothing I would buy or wear. It was important to me that I find a way to dress so I looked like everybody else in the general public.  I had been buying and selecting my own clothes since I was 10 years old, and a model since age 13.  This was a fun project for me, not rocket science.

Over the counter jewelry that would cover my stoma was my mission.  At first I used the crocheted stoma covers my club members’ wives made for me.  I wore them under a silk scarf to prevent staining the scarf.  As the weather grew warmer the scarves had to go.  As I looked through the magazines and catalogs at the Spring/Summer fashions (open neck tops and bathing suits) I had to find something cooler to wear around my neck and over my stoma.  I was always on the lookout for just the right thing.  I found inexpensive smaller sized things at the Junior Miss counters in my favorite department store.  At other times I found goodies that weren’t quite so inexpensive. 

The trick was to find things that were interchangeable.  While visiting my son in Oregon in 1983 I found a springy ¼” sterling silver collar that is open in the back.  It had a lovely silver leaf that appeared to fold over it…right where it needed to be…in the middle. The leaf also slipped off so I could use the collar with other pieces of jewelry on it.  There were even matching clip earrings.  (No, I haven’t pierced my ears yet, and probably won’t at my age.  I’ve had enough piercing with the stoma for this lifetime.)

This narrow silver collar became the mainstay of my jewelry collection.  Once I figured out that the shell I bought in Florida in 1986 would accommodate the end of the collar through the back, I now had a perfect stoma cover.  It fits nicely in the open neck of my blouse. It works with my bathing suits.  My fashion dilemma was over for everyday wear.  It has become my signature piece. 

I discovered some other benefits about this shell.  It is natural material, and the contours in the back where half of it was sliced off serve to collect condensation as I breathe.  So now I had a cover that distracted the eye as a piece of jewelry, and a stoma cover that provided moisture.  It is easy to wash and dry.  Believe it or not I still receive compliments about my necklace every time

I go out in public wearing it - grocery stores, airports, and most recently at the library while getting my taxes done by the AARP Tax Team.

Now that you have a better idea of how I approached my journey through rehabilitation you will have a better idea of why I am concerned about “The Perpetual Patient” attitude.  I have observed some interesting behavior over the past three decades.  Since the advent of the TEP, we frequently hear, “Following laryngectomy the prosthesis is inserted and off you go back to your old life.”  It hasn’t worked that way for everyone, as we often witness or read about. 

Every Medical School and Medical Center has their own protocol.  Add to that, every one of us is different.  The only thing we may have in common is laryngectomy surgery, and even that doesn’t hold true for all of our readers.  What concerns me as a long time participant and observer of laryngectomee rehabilitation is the current lack of pre-op counseling.  I also find troubling the send off some patients are given as they prepare for discharge from the hospital.  They are set up with suction machines and other equipment that is rented or purchased by Medicare or private insurance.  Some probably do need this equipment since hospital stays have been reduced due to insurance coverage. 

What I take issue with is the sort of mindless preprinted discharge orders.  When I was teaching alaryngeal speech at a busy Medical Center, I discovered that the Social Worker assumed that the laryngectomy patients would all need to take this array of stuff home since they used it at the hospital for the first few days.  He had worked up a list that was an “automatic order”.  I wondered if he had been buttonholed by a salesperson.  Later at Club meetings I listened to members talk about how their equipment was in the closet unused, or they were getting a rental bill every month. Often this equipment was donated and tagged “unused”.   It was news to the newest members that most of us never used any of the stuff.

The other disturbing attitude I came across was from an ENT who was the guest speaker at one of the S. CA Clubs.  He made the statement that he hopes his patients will remain “lifetime patients”.  Message conveyed.  There was no milestone like “5 yrs…and you’re out of here”.  Some of the members of this club assumed that as laryngectomees their ENT was now their primary physician.  Not so.

Another ENT in Michigan was so concerned about his patient he used a very large safety pin to attach an orange Emergency card to the lapel of this woman’s full length fur coat.  I met her while having lunch with her club.  When I saw the rather dog-eared orange card and huge safety pin on her lovely coat, I asked her why she had it pinned in such an obvious spot. Perhaps she had a serious health problem?  She explained to me what a favor the doctor had done for her with this “gift”.  She kept it there all winter “because people in line always let me go ahead of them, and folks treat me like a queen everywhere I go, when they see this.” 

We are all on a very personal journey.  Each and every one of us is seeking our own way.    Our attitude, our ability to set realistic goals, and courage to try new things will make a difference as we move along toward wellness.  Sometimes it is tough to figure out if we as helpers are enabling or care-giving.  It is a question worth examining.   We’ve read and heard many times in recent years, “It takes a village”.  This is true for us as healthcare professionals, family and friends, and support group members.  What we do and how we do it matters a great deal.

Elizabeth Finchem
Tucson, AZ
 

 

 

 

 

Talking of Which Reminds Me…

Spring Fever Ramblings with

Rosalie Macrae

 

Happiness is definitely cylinder-shaped, I said to myself this morning, after opening up my EL parcel and asking Ernie the postman how I sounded now. He said I sounded much nicer. Not so bad-tempered as his wife first thing, either. I told him to hang on a minute. I, too, would be a virago, fetching his breakfast at dawn, as she does.

Talking tempers, up there in Inverness, dear cousin Deirdre, don't be so childish about the shape of cylinders.Deirdre has always considered me a Person with Motives since stealing her boyfriend; we were nine.She pounces on my articles to criticize.An academic with a dirty mind. Nothing worse. You should hear her filthy Latin songs starting, “O divina Clementina”...No, you weren't referring to Winston Churchill and how he loved his cylinders of Romeo y Julieta Havana cigars. Change the subject or you will be insinuating that pure little Julieta liked things cylinder-shaped too.

It is Saint Waudru's Day.She was a very virtuous Belgium virgin lady and they cart her effigy around in a gold chariot today just 25 grey water miles away. So let us be correct in her honour. But while talking cigars, I must just mention an old colleague, Graham Dark, who found himself after a great mistaken identity saga, as a guest at a dinner party with Churchill. The great man handed him a cigar. Graham, a'quiver with awe, smoked it down to the last crumbly bits and then made the mistake of going home and telling his father. It wasn't that Graham's father was an anti-smoking zealot. In the Sixties there were few around. It was that his perishing son hadn't had the perspicacity--as Dickens would have made Mr. Pickwick say--to accept the cigar and then discreetly stow it away in his back pocket to be handed down to decades of Darks for posterity; or as a safety cash cache for any financial disasters. Christies, the auctioneers, would have had a field day. Churchill's DNA on his cigar; and the Darks did have financial disasters. Gee-gees I heard.

Right. My cylindrical sonic delight arrived in a box, tightly packed with polystyrene white puffs. At first I thought it was more free carbon footprint light bulbs.I have a cupboard full, and tossed the polystyrene outside to be swept up later. But no.I should have guessed it would be more exciting, borne by Ernie, frost or no frost, wearing his summer shorts for the first time this year. A good omen.

My two best Servoxes were there in the cardboard cylinder all tuned up and sweet. No throbbing rasps or leaps from major to minor. Just as good as an EL can sound. They had been serviced by a technical genius called John Tope at his warehouse in a small industrial estate tucked away at the back of Wetherby. It is a bustling, quaint place up in Yorkshire, famous for its Sunday roast dinners. As clambakes are to New England in America, so melting roast beef and Yorkshire puddings, crispy outside and gooey in the middle, are the traditional fare in places like Wetherby. They rise up in the roasting dish-- these batter puddings from the delectable drippings.

They inspire people like the organist Malcolm Galloway to conduct the local Elysian Singers after a good lunch; they help mould perfectionists like John Tope, a Spencer Tracy kind of Yorkshireman. He tuned my Servoxes in to my voice on the telephone, twiddled, spoke in to let me hear that they sounded more feminine than before, listened again, and gave a no-nonsense Yorkshire, “Aye, lass”, when I said that I would settle for that. The Katherine Hepburn-ish---very ish!--huskiness would be just fine. As Mr. Tracey would have agreed.

I rang up friends and did a quick poll to see what they thought of the vastlyimproved quality. Then I rang up John and he declared himself well pleased. As did Jim Lauder, our Texan specialist, another sound perfectionist.And, it has to be said, an avid Yorkshire pudding lover. When he visits Wetherby, he says he can't wait for his Yorkshire puddings."With beef Wellington and washed down with a couple of pints of Yorkshire bitter," said Jim nostalgically on the telephone.

Writing about this scrummy fare had made me nostalgic too, and I remembered that this was the day my butcher sold cartons of dripping, after roasting massive joints for his cold meats’ counter. As a new lary, their juices mixed with water had helped restore my pathetic appetite, little by little. Packed with life-restoring vitamins, I bought three tubs to deliver to my sons, a tiny recompense for back then. I was having a chewing-the cud-chat with the butcher as a soldier standing at the counter was looking at my EL, with a sort of professional air. He said he had just come back home from Iraq--I live in a garrison town--and he had helped with a tracheotomy when he was out there.A shell had hit a local lad in the throat. “Brave little chap.” said the soldier medic, “But, he'll never get one of those. No funds”. He motioned to my EL.

That will be top of the agenda at our next meeting. They send old reading glasses to war-savaged faraway places. Imagine sending voices; people being able to communicate with their families again. It is too exciting to contemplate. Please God, win me the lottery, and let me be there for the handover!

On my UK website, Laryngectomy Life, we are all boosting the morale of a 24-year-old lad called Steve, who, as you read this, will have had his laryngectomy operation. One of the most uplifting letters to him was from a lary postman, not my Ernie, but Graham.

He wrote, "I praise the EL.I love my Servox, and people can't understand why I could not go back to a normal voice. This is me, has been for nearly eight years, and I am in a happy place; so happy it has been for nearly all of that time..."

I wouldn't go as far as that, I have to say. I would give away my Servoxes to Iraq any day to be Maria Callas singing Madame Butterfly at the Met. Vive la difference though, Graham!

 

Footnote:

The thrushes and doves and sparrows had a great swoop down while I was at the butchers and cleared away all the polysterene puffs. Come to think of it they are cylindrical too. The fine Corbusier nests will be the talk of the treetops.

 

 

 

 

Voices Restored – One Country at a Time

~ Jack Henslee – jhenslee@comcast.net

 

 

In March-April of 2008 I returned to one of my favorite places in the world…Costa Rica. This was my third trip, and this time I was able to accomplish what I failed to do on my last visit – make contact with the Costa Rica Association of Laryngectomees and attend one of their meetings. When I made my last trip in 2005 I had tried for 2 months to just find a laryngectomee so I could learn whatever I could about life as a laryngectomee in Costa Rica. I wanted to see if I could somehow facilitate some type of support if needed. That effort was in vain, but thanks to their joining the IAL in 2006 I finally had a contact.

I was graciously met at the airport by Senior Marcos Zalazar and his lovely daughter. She did the translations for us since neither of us is anywhere near fluent in the other’s language. Marcos safely delivered me to my hotel and then picked me up the next morning and took me to the Calderon Guardia Hospital in San Jose for his club’s meeting, which culminated in their adoption of new bylaws and the election of new officers. Marcos was elected as Vice President.

Jack Henslee, Marcos Zalazar, the VP of the Costa Rica Club, and Dr. Ana Villalobos
Jack Henslee and Bernardo Coronado, President of the Costa Rica Club

 

There were approximately 17 people present at the meeting, nine of which were laryngectomees. Also in attendance were Dr. Mario Zuniga, an otolaryngologist, and Dr. Ana Villalobos, a MD who has also studied speech pathology in Italy for 3 years. Dr. Villalobos volunteers her time to the group to assist with rehabilitation. During the course of the meeting we were also joined by the hospital director who welcomed me and gave an overview of the hospital and all of its ongoing projects. Unfortunately, none of them were specific to laryngectomee rehab.

This trip was more than just a casual visit on my part. Thanks to the generosity and support of the California Association of Laryngectomees, Griffin Labs, Lauder Enterprises, Luminaud Inc, and my local club “Look Who’s Talking,” I was able to donate six artificial larynges (ALs), many stoma covers, foam filter covers, and various educational materials to include Spanish instructional tapes for esophageal speech (ES), written speech instructions in Spanish, DVD instructions for the use of ALs, and numerous other items and contact info for various things such as WebWhispers.

Their response was overwhelming and quite touching. They had never seen foam stoma covers. One lady immediately started drawing patterns of the cloth stoma covers, and the ALs were like a miracle. Out of the nine laryngectomees present only one used an AL – a Servox that he had bought himself. Three of them used esophageal speech and the other five had no speech. One had been without speech for over 11 years. The unfortunate truth is that while medical care is free in Costa Rica, rehabilitation is another matter. They do not pay for ALs, they do not pay for speech therapy, they will pay for a TEP but the maintenance and prosthesis are the responsibility of the patient. As explained to me they wouldn’t mind paying for an AL, but the total life cycle cost of purchase, training, maintenance, and replacement is considered beyond their capability.

While the data isn’t absolute I was told that there are only about 50 “known” laryngectomees in Costa Rica and unless they learned ES, or could afford another alternative, they never spoke again. I estimate that there are probably about 25-30 laryngectomees currently there that may never speak again simply because of financial reasons and a lack of advocacy. After all, any group of 50 is pretty small to be overly concerned about when the country has other problems, but when the 50 are for the most part voiceless their chances of changing the status quo are slim at best.

It has always bothered me to see a laryngectomee with all his/her articulators in good working order not be able to speak, but to walk into a room where five of them can’t speak should be unacceptable. I believe that it is possible to obtain 25-30 donated (used) ALs and the necessary volunteers to teach them how to use this special gift. That is a mission I want to pursue. For probably less than half of what the IAL spent on the last Voice Institute we could probably give VOICE to an entire country. We could make a magnificent and timeless contribution that could lead to major life style changes in one small country and could pour out onto others. To me this is most worthwhile, and if you would like to join me and others to restore voice to the voiceless, then lets start here…one small country at a time.

 

 

 

Welcome To Our New Members:

 

I would like to extend a "Warm Welcome" to our most recently accepted laryngectomees, caregivers, vendors, and professionals who have joined our WebWhispers community within this past month. There is a great wealth of knowledge and information to be accessed and obtained from our website, email lists, and newsletters. If ever there should be questions, concerns or suggestions, please feel free to submit them to us from the "Contacts" page of our website.

 

Thanks and best wishes to all,

 

Michael Csapo

VP Internet Activities

WebWhispers, Inc.

 
 

We welcome the 22 new members who joined us during April 2008:

 

Michael W. Booth
Eatonville, WA

Laura E. Chandler - (SLP)
Paducah, KY

Chris M. Drewry, Sr.
Sandy Springs, GA

     

Kurt Englert
Glade Valley, NC

Therese Hamtil - (SLP)
Leawood, KS

Donald G. Holmes Sr.
Bracey, VA

     

Jeanette Holmes-(Caregiver)
Bracey, VA

Helen Huchins
San Francisco, CA

Jack Jkac
Columbus, MI

     

Terence McDermott
Eastcote (London), UK

Peggy Morgan
Vacaville, CA

Sarah D. Perez - (Vendor)
Ventura, CA

     

Charles L. Pickett
Capitol Heights, MD

Laurentiu Popa
Bucharest, Romania

Denise Squires
Brooklyn, NY

     

Dan Stare
Pittsford, NY

Heather Starmer - (SLP)
Catonsville, MD

Timothy Stone
Stockton, CA

     

Tim Sullivan
Barkhamsted, CT

Donald R. Turnley
Baton Rouge, LA

Toni Turnley - (Caregiver)
Baton Rouge, LA

     

Larry R. Worcester
Dodge City, KS

 

 

     

 

WebWhispers is an Internet based support group. Please check our home page for information about the WebWhispers group, our email lists, membership, or officers.
For newsletter questions, comments or contributions, please write to editor@webwhispers.org
           Managing Editor - Pat Wertz Sanders
           Editor - Donna McGary
 

 

 

Disclaimer:
 
The information offered via WebWhispers is not intended as a substitute for professional medical help or advice but is to be used only as an aid in understanding current medical knowledge. A physician should always be consulted for any health problem or medical condition. The statements, comments, and/or opinions expressed in the articles in Whispers on the Web are those of the authors only and are not to be construed as those of the WebWhispers management, its general membership, or this newsletter's editorial staff.
 
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