Head & Neck Cancer Support Group
Kirklin Clinic – Birmingham, AL
distributed by American Cancer Society, edited by Pat Sanders
ALASKA, Again by Pat Wertz Sanders
I just returned from a place I never thought I would see again. I was there just over 8 years ago, when I was struggling to recover from breast cancer and I was terribly weak and tired. I didn't think my chances of ever being physically able to travel again were very good. My chances were actually even worse than I thought as I found out shortly after that.
I had been on a cruise with some friends early November, 1992 to the Eastern Caribbean and I loved it, but when we talked about Alaska, I yearned to go with all my heart. My finances were not the best but I figured I could save for a cruise and, with care, I could afford one every other year so my traveling buddy and I picked the end of May, 1994 to plan a cruise tour to Alaska. I scrimped and saved and made all of the arrangements well in advance, as you have to do, and despite having some health problems in 1993 with a cough and hoarseness, I approached the new year with the greatest anticipation. This was the big year…going to Alaska!
January, 1994, I was doing clean-up chores and trip planning and I stopped in for my yearly mammogram. To my confusion, I didn't get the nurse calling to say it was ok, but my doctor called. He said I had to have a biopsy. I argued and pleaded and he agreed that it was probably nothing but I had to go in. Some years earlier, I had a biopsy that I didn’t think I needed and it had been nothing. This was same day surgery. The surgeon who did the biopsy said his office would call with the results and I was not even concerned. Just glad it was over.
I was sitting at my dining room table with the telephone stretched out to reach so I could chat while I looked at the newspaper, and, when it rang, I picked it up never expecting that I would be told that I had cancer and that I had to go back in for more surgery. They had cut too close to the small tumor so I didn’t even have clean margins. At that time, I didn't know what that meant. After promising to call his office the next day to set the appointment, I hung up. I was in shock and didn’t even cry. After a minute of trying to absorb what the doctor had said, I called my son and when he answered, I told him the doctor had called and I said, "It's…it's…". I cleared my throat "It's…" and the word cancer stuck in my throat like a baseball sized knot. Then the tears started to roll as I croaked out the horrible news. Nobody in my family had had cancer. We didn't know what we were facing but it was terrifying.
Next step was back to the hospital to check in for some more surgery and then I was sent for 36 treatments of radiation plus all of the appointments beforehand for scans and marking.
In the meantime, my friend was determined I was going to Alaska and she enticed several members of her family to sign up for the trip and the cruise agent even came with us and he got his parents to go. We ended up with enough people signed up to earn a cruise coordinator's cabin rate and my fare was partially paid. This is what they did for me so I could go to Alaska. We left 14 days after I had finished radiation. I looked like a ghost.
I loved every minute of the trip but I was the most fatigued passenger they had. Best of all I loved the things I could do sitting down! When I left Alaska, I wondered if I would ever have the strength to go anywhere again but I had hope that it was all over except the slow healing process. Five months later, I had the throat biopsy and I had another primary cancer. I've told this story many times in previous Headlines so I'll skip ahead to the next time I had a chance to go cruising.
With restored energy, and as newly appointed VP of WebWhispers in 2000, I went to the Nashville IAL, planning the WW dinner, getting information on tours for IAL and WW attendees, and making notes for a WW Officers meeting. One of the topics I brought up in our meeting was offering our members a chance to get together other than at the IAL. Knowing what work a meeting like the IAL involved, I proposed that we sponsor a cruise, where we would not have to worry about banquets, hotels, meeting rooms and speakers or entertainment. Let the cruise line handle it. I had some brochures and very reasonable prices to go out of New Orleans to the Western Caribbean in April so as soon as we arrived home, I started the action and our webmaster, Dutch, set up a web site. In the short period of time we had for planning, we were pleased with our pilot cruise. We had 21 people sign up and 13 of them were laryngectomees, most of whom had never been on a cruise. The funniest letter of reservation I got was from Charlie Anderson, who fussed that he had been telling his wife for years that he couldn't go near the water and then I had to do this…so he guessed they would just have to go! We expected to have a good time but we had better than a good time. We bonded.
With the IAL scheduling for 2002 in Vancouver, the big cruise port for Alaska, I was encouraged by some of the IAL folks to set up a WW sponsored cruise following the IAL annual meeting and it was approved by the WW officers again. We never dreamed we would have the kind of turnout we did. We had 115 people and 45 of them were laryngectomees. Most were WW members and some were IAL. Only a few had no relationship to our "family".
Some of the cruisers were talking about our favorite time or place on the cruise. I didn't tell them mine. I was alone on the balcony of the cabin my friend, same travel buddy, and I had splurged on. I stood there for a while and watched the wilderness slowly change and quietly realized how good life is, how I really was back in Alaska, and this time as a real working cruise coordinator for 115 people, some laryngectomees, like me, and some friends, but all "family", and this time the tears were happy and emotional, with pride and pleasure in how far I had come and the friends I had made along the way. This realization that we never know how far we can go and what is around the next corner was my favorite time and place in Alaska.
NEW OR EXPERIENCED – IT DOESN’T MATTER By Stan Mruk
While scanning over the traffic on the Web Whispers web site, I noticed a posting from a quite experienced (8 year) laryngectomee, who often offers advice to the new folks.
What struck me was that this man had encountered a problem with excessive mucous which he had not previously experienced and was now seeking the help and advice of others.
This had been preceded a few weeks before by a posting from a new (27 day) laryngectomee with all sorts of questions about life as a laryngectomee. This is something we have all undergone – questions, questions, questions.
What struck me it the correlation between the “newbie” and the “old timer”. It would be wonderful to be able to say to a new guy that after X number of years, THIS will happen and THAT will take place and your life will be one big happy playground. However, I believe our “old timer” makes the point that we NEVER stop learning as laryngectomees. Our personal health situation constantly changes as we pass along in years and developments in laryngectomee equipment and support also constantly changes.
I believe there is one piece of advice for the newcomer that should stand out above anything else we can offer. Your fellow laryngectomees understand that you have hundreds of questions which race through your head daily and we can empathize with your sense of impatience and, at times, despair. However, if there is one quality above all others that is critical to living a full and productive life as a laryngectomee, that quality would be PATIENCE.
Granted, ours is not always an easy lot but we have been fortunate to have received a second chance at life when we lost our vocal cords. In my opinion, this fact alone puts us ahead of the game. Everything else is a matter of shared knowledge. This is why association with other laryngectomees, either through a support group or on an individual basis, is so important.
Keep in mind that through our surgery, we have gained time – the time we need to learn the “tricks of the trade”. Most of us experience some degree of despair in the beginning or even after we have been at this lary business for some time. But believe me, this will pass if you just open up and talk to another laryngectomee about it. For the most part, it is a temporary situation – as long as we only permit it to be temporary.
So have PATIENCE – the answers will come in time. Don’t DESPAIR – you are not alone (unless you choose to be). You’ve always got a friend to talk to if you just look for them. If you belong to a support group or have laryngectomee friends, you’re there already. Now go out and find that laryngectomee who got left behind and be a friend to him.
Humidity, Relatively Speaking by Pat Sanders
We hear about humidity all the time but we need to think of it in the way that it affects our lives. We, as laryngectomees, because of our changed breathing patterns, are very much affected by humidity but we don't necessarily understand the numbers. We know that hot summer air often feels heavy with moisture and cold weather is often referred to as dry, crisp, air and we can suffer either way. We often hear the question, "What percentage of humidity is recommended?" Mostly the answers say about 50% and that is not a bad goal; however, 50% is not always the same amount of water vapor in the air. It depends on the temperature.
The term "relative humidity" is used for the moisture in the air "relative" to the temperature, meaning that warm air holds more water vapor (the gaseous form of water) than cool air. The measurement is the percentage of what it would take to saturate the air "at whatever the current temperature is ". By the way, the "dew point" is the temperature at which the relative humidity reaches 100% and the air cannot any longer hold that moisture, so if that air cools and cannot hold that amount of moisture any more, you have dew.
I found some figures on the Internet that explain it in numbers. In the Winter, as cold air leaks into your home and is heated, its relative humidity goes down. For example, if outside air, temperature at 40°F and a moist 80% relative humidity, is heated to 70°F, its relative humidity drops below 20%. Too low. Homes are comfortable at a relative humidity in the 30% to 50% range and we larys tend to need it at nearer the 50% or more, but our houses do not need to be that moist. Anything much lower than 30% causes static electricity, dry skin, chapped lips, and respiratory problems even for people who still breathe through their noses. We larys have dried mucus and the possibility of having tracheal dryness and breaking capillaries as we cough. That's why so many of us have trouble when we turn on the heat in the Winter. We lose a lot of moisture every time we exhale, approximately 3 pints per person per day are exhaled into the air and we can become dehydrated, which we try to avoid by wearing HMEs and stoma covers, using humidifiers, and drinking liquids (preferably water). Houseplants help by adding humidity. I especially like the plants that grow or root in water. If we have 50% humidity in the Winter, we may save on fuel bills since the damper air feels warmer to us and we can turn the thermostat down a degree or two. Watch for constant condensation on the inside of your windows as an indication of more humidity than you want for your house. When you shower, breathe in the wonderful moist air, but, in the summer, leave the vent fan on for a while to get rid of the moisture when you are through, especially if you hang your damp towels In the Winter, when it is difficult to get enough moisture, it is the reverse. Hang your towels and leave the door open. Anytime your humidity is low, wet down a stoma cover or wash cloth and get the moisture where it does the most good, right over your stoma.
Pay attention to the relative humidity outside and get a hydrometer ($5 at your local home supply store) so you know what is going on in your house. This is mainly written about Winter time because that is when we have most of or respiratory problems, but be careful of getting the humidity too high in the summer. Your wooden furniture and floors will swell and you need to strike a balance that will not cause mildew and mold in your house but will keep you breathing right.
COMMENTS FROM A VENDOR ON THE 2002 IAL (taken from WebWhispers list)
Murray Allan and the committee did a wonderful job overall. Murray took some ribbing about how close the hotel was to his home so that little travel time was required for him to make the arrangements - but it is difficult to imagine that he could have done better with a hotel choice even if it had been 40 miles on the other side of town.
The hotel and conference area were exceptionally nice and at a good price. The staff were pleasant and helpful. There was plenty of room for everyone to gather, pass through and mingle in the access area outside the meeting rooms. There were very reasonable temperatures throughout the building.
The Auxiliary sale tables had some absolutely lovely things for the raffle! - I am still mourning for the beautiful blue quilt that I didn’t win. Many of us missed the Christmas decorations they usually sell, but no one brought any this year- and the total number of things on the tables was smaller than usual. Probably people were wary of trying to bring things across the border. Hopefully a lot of people will have 2 years worth of things to bring to Atlanta next year.
The food was excellent - at the restaurant, the Meet-and-Greet, the WW dinner and the IAL banquet. The “big band” entertainment at the banquet was just to our taste - and suited a lot of people “our age” I’m sure. Hopefully the younger ones didn’t mind it. (We have a daughter-in-law and a 24 year old grandson who like big bands, so there is hope yet for the culture of future generations.) The band seemed rather surprised when the IAL President, George Ackerman, asked them to keep the volume down a little but they tried to comply. It was very nice to be able to have some conversation without difficulty hearing.
My husband, Tom, of Scots heritage, was thrilled to have a piper greeting people Thurs. a.m. We know that not everyone finds bagpipes pleasing to the ear, but the piper got Tom’s day off to a lovely start. The opening ceremonies were impressive with the Pipers and the Mounties.
We assume the meeting and VI had good topics and that people were pleased - we didn’t hear complaints from anyone - but we didn’t have time to listen in ourselves because there were very few times when there weren’t people to talk to in the exhibit area. From the viewpoint of a vendor, the meeting was surprisingly good - there was plenty of room for our tables and for the people to move around among them - and even though it was a somewhat smaller group than hoped, people were interested and we gave away all of our catalogs and had to send out more after we got home, which is unusual. The city of Vancouver was further north, across a hill and could not be seen from the hotel. When we drove over the crest of the hill, this Dorothy’s first thought was that she was approaching the Emerald City of Oz. There seemed to be a huge collection of fanciful green glass buildings. I never was able to get any pictures to do the Oz effect justice - not again in the right place with the right light - but we stayed for two extra days and took many rolls of slide film in Vancouver and Victoria and up Grouse Mountain. If people who couldn’t come or couldn’t stay any extra days get a chance to do the tourist thing there sometime in the future, don’t miss the chance!
Of course, the greatest thing of all about any annual meeting is the chance to talk to old friends and meet new ones, to renew acquaintances and get to know people better. That happens regardless of the setting - but when the surroundings are lovely, too, all the better.
Anyone who attended will have long-lasting great memories, so a BIG THANKS to Murray and all. Dorothy Lennox of Luminaud; Email: firstname.lastname@example.org
SET UP YOUR 2003 CALENDAR
You can find the information about the annual meeting held in Vancouver on the IAL website: http://www.larynxlink.com/
The 2003 AM/VI will be held the week of 23-28 June 2003 in Atlanta, GA. Information will be posted when it is available.
The photos are online from the WebWhispers and Friends Alaskan cruise held after the Vancouver meeting: http://www.webwhispers.org/pages/WWCruise02_4.htm As you can see by the photos, a good time was had by all. The next WebWhispers and Friends Cruise will be November 9-15, 2003 out of Ft. Lauderdale to the Eastern Caribbean. You are invited. All details are at: