|Name Of Column
||Medical Choices and Change
||News & Events
||Paul M. Evitts, Ph.D., CCC-SLP
||Exercise, Exercise, Exercise
||Talkin' about the VI
|The Speechless Poet
||Len A Hynds
||The Song of the Sea
||Prose & Poetry
|Bits, Bytes & No Butts!
||Windows 10 here & Chicago Mob
||Cancer Survivor and the Workplace
INDEX AND LINKS TO EACH ISSUE MAY BE FOUND AT: http://webwhispers.org/news/WotWIndex.asp
Medical Choices and Changes
Health Care at Home
No, not the kind of home health care that is prescribed when you can't leave home. The kind that Mama or Grandma used. A spoon of soda in a glass of water for one cure, gargle with salt water for another, breathing steam over the tea kettle spout for a stuffy head or vicks on the chest for lung congestion.... and my dad's favorite remedy for almost all of the above: lemon and honey in very hot water with whisky.
Some of the new changes in the way we take care of our health are happening so fast that I waited till the last minute before writing up the latest. Theranos has a new way of finger pricking blood testing that is cheaper, easier on the patient, and the new method has now been approved at their labs around the country, the new move will be to allow you to order it yourself without an order from your doctor and you will pay for it yourself at greatly reduced rates.
"Early in July, this year, the state of Arizona had a new law go into effect allowing people to order any blood test they want, without a doctor's referral, using a new finger prick method just approved by the FDA. This is being called a new era of prevention in medicine and will be the model for the country." This is Theranos.
Clinics for collecting the blood with the new method are planned for Theranos wellnesss centers mostly in Walgreens Drug Stores. In Arizona,they have some open already. They have a large variety of tests available even in nights and weekends. They post the costs for 100s of tests at reasonable rates, many even under $10 per test. If you don't have insurance or GOOD insurance, this could be a wonderful option. If a patient has the need for repetitive testing and have to go to the doctor's office or clinc, it can be costly.
They say: "Lab test data drive more than 70 percent of health decisions. Yet most of us know more about our credit card data than we do about our own health. Most of us only begin to focus on getting tests done once we're already sick. And too many of us find out we're sick when it's too late to change the course of disease."
I looked up CVS because they made a big announcement last year that they were going to offer these clinics...no appointment needed in their Drug Stores and I see they have these in about 30 states now. "MinuteClinic® walk-in medical clinics are staffed by nurse practitioners and physician assistants* who specialize in family health care. We care for children and adults, every day with no appointment needed." On their website at:
http://www.cvs.com/minuteclinic/services, they answer many questions about how it works. These are not for EM problems but they say are for: Minor illnesses or injuries, vaccinations and injections, wellness physicals. They have a price list and sometimes offer specials. CVS has also bought the pharmacy end of Target so watch for help there.
Some of the equipment available at their clinics is:
• Connected otoscope: Looks into the ear canal and turns phones into a remote diagnostic device. Users can send videos and still images of the ear to medical professionals who can promptly address any issues and prescribe a treatment.
• Connected blood pressure monitor: Allows data to be shared with medical professionals, caregivers or other apps to help customers better manage their health.
• Apple Watch integration: Improves access to prescription notifications and other health care information through the Apple Watch app.
Ohers are offering similar clinics but you need to research where they are offered and what they offer.
Digital Health is on the way.
EXERCISE, EXERCISE, EXERCISE
I teach university speech pathology classes and when we start talking about muscles and exercise, I joke with the class that my exercise regimen consists of two sit-ups per day – getting out of bed in the morning and back into bed at night. A few years back, an astute student pointed out that I’m actually only doing one sit-up per day. She cut my exercise program in half with that one comment (and sealed her fate as not one of my favorites).
I share this because the importance of exercise is getting a lot more press these days. For a while it was all about brain health and mental exercises but the research is really starting to come back to the importance of physical exercise and its overall effect on the body and its beneficial effect on the brain.
Two reports that I’ll focus on here specifically looked at the impact of physical exercise on health-related quality of life (HRQOL) for people with cancer. For both of these studies, the researchers went through all of the published research on physical exercise for people with cancer and HRQOL – The first report (Mishra et al, 2012) addressed physical exercise during active cancer treatment and the second report (Mishra et al, 2012) for cancer survivors. These were large studies too—over 4800 people in the report on active cancer treatment and over 3600 people in the report on cancer survivorship. In the world of research, these are big numbers. Exercises such as walking, cycling, yoga, strength and resistance training- even Tai Chi and Qigong (not entirely sure what that is) - were all included. All of these exercise activities were found to have a positive impact on QOL factors such as overall HRQOL, physical functioning, and social functioning. Even fatigue was found to be reduced for those people who did moderate exercise during active treatment.
The second report looked at similar things but looked at these things with people who were not involved in active cancer treatment. This one too found that physical exercise showed improvements in self-image, overall HRQOL, emotional well-being, sleep disturbance, sexuality, and social functioning for people with lots of different types of cancer. Not surprisingly, even overall anxiety was also reduced. (Please note that both of these studies are available for free on the Cochrane Library Database- http://www.cochranelibrary.com/) .
Even aside from the benefits in all of those HRQOL areas, physical exercise is good for the brain too. In fact, I’ll never forget what a very famous neuroscientist from Johns Hopkins University, David Linden, said recently when asked ‘what is the best thing someone can do for their brain?’ His response- “30 minutes of aerobic exercise a day.”
Sadly, all of this takes me back to my own exercise program. Even if I take multiple naps a day, it still won’t cut it. After writing this article- I think it’s time to turn over a new leaf.
Associate Professor Paul M. Evitts, Ph.D., CCC-SLP
Department of Audiology, Speech-Language Pathology, and Deaf Studies
Towson University, Towson MD 21252
As I write this it is another glorious summer day here in Maine. We had a terrific thunder and lightning show last night. The torrential downpour cleared the humid air and gave the land a much needed deep drink of water. This morning is summertime perfection. And I plan to savor every last minute of it.
Actually lately I have been trying to savor every last minute of every single day - even the gloomy, muggy, buggy, hectic, stressful, frustratingly disappointing days. I have become acutely aware over the last year of just how fast all our days go by and how often what seems like it should have been just last week turns out to have been last year.
A lot has happened so far this year to bring me to this epiphany. My dad died in January just weeks shy of his 90th birthday- something he had so wanted to achieve. I turned 62 in March only days after my oldest grand-daughter turned 6 and her sister hit the three year mark two months later. Also in May, my young nephew and his wife had their miracle daughter and learned a month later his cancer had returned for the second time. We are cautiously optimistic at this point by the results of a new trial treatment he has started. My Mom celebrated her 88th birthday in June and my son turned 39. It certainly has been a landmark year for the McGarys.
Yet as I write this, I realize while it has been momentous for us, actually none of this is extraordinary. Families live and die and celebrate birthdays and survive awful illness and tragedy every day…just not always my family…but we did this year as did many other families and undoubtedly will again.
That is the nature of life and will not change. But what we can all do is try to capture every fleeting moment and enjoy its gifts. It will not come again- this moment, this place, this time – whoever and wherever you are. And while I often think of Dad these days I am more often reminded of this by my grand-daughters. I am truly grateful for the time I was able to spend with him especially towards the end. One time in particular comes to mind. We had all gathered at my folks’ place and the girls were running around, playing hide and seek around his hospital bed and in and out of the rooms. The girls kept running in to check on him, saying boo, climbing up to hold his hand and then running out giggling as only little girls can. I went in to “referee” and Dad looked so happy and said, “This time is so precious. Thank you.” It was a perfect moment – a common one repeatedly daily for families everywhere – and one I will always treasure.
It is practically impossible to always appreciate the value of each daily experience. It’s easy for the momentous personal milestones, the special occasions, the spectacular sunset or perfect summer day. It’s harder to appreciate the value in a day of frustrating chores or difficult tasks. Equally hard sometimes just to remind oneself that “this, too, will pass” when struck in traffic as kids argue in the back seat or “this moment will never come again” as those same kids want you to play Go Fish one, two, three more times or try to “help” in the kitchen. It won’t be long before they don’t think it’s great fun to wash your dishes for you, in fact will much rather hang out with their friends than with you. There will be different joys then but this moment will never be repeated.
Life is full of second chances- even third, fourth and fifth chances sometimes but there is no pause and repeat button. There are no do-overs. And it all goes by startlingly fast. As John Lennon wrote, “Life is what happens when you’re busy making other plans.” And while we can’t stop or even slow down the clock we can, I have found, make it seem to slow down when we make a conscious effort to savor the moment. We literally “take time”.
Recently I turned on the radio while driving around on one of those mindless/endless chores mornings and heard Steve Winwood singing, “The Finer Things” from back in the late 80s. It’s a great tune and I had a crush on him for years but this time I heard the song in a different way.And right now I want to enjoy every noisy, messy, goofy minute.
At first I just felt good because I was driving around, windows down, on another perfect summer day, radio blaring an old favorite song and that made me feel cool. Then I actually heard the lyrics, as if for the first time, and felt deep appreciation for that moment, for the simple beauty of everyday life. I wasn’t just feeling cool anymore; I was the essence of coolness - fully alive and celebrating life. And THAT was way cool!
While there is time let's go out and feel everything
If you hold me I will let you into my dreams
For time is a river rolling into nowhere
We must live while we can and we'll drink our cup of laughter
The finer things keep shining through
The way my soul gets lost in you
The finer things I feel in me
The golden dance life could be
I've been sad and have walked bitter streets alone
Come morning, there's a good wind to blow me home
So time is a river rolling into nowhere
I will live while I can, I will have my ever after
The finer things keep shining through
The way my soul gets lost in you
The finer things I feel in me
The golden dance life could be
Oh, keep shining
Life could be better, life could be
We go so fast,
why don't we make it last
Life is glowing inside you and me
Please take my hand, right here where I stand
Won't you come out and dance with me
Come see with me, oh, come see
Steve Winwood, Will Jennings
The Voice Institute & IAL AM
What to change?
What would you like to see and learn?
Tom Whitworth - March 2014
The Voice Institute in Buffalo was within three months of my surgery and I had only been speaking consistently for about six weeks, so few things could have been of more value to me than the VI. I knew early on that I wanted to be in Baltimore in 2015 and I wasn't disappointed there either. The volume of information has been incredible, especially for a new Lary. Jodi Knott as director and each of the faculty presentations have been excellent. Delicate topics, like intimacy and self-image have been skillfully presented and are particularly helpful. I also think vendor support and anything hands on are critically important. The banquet is always a blast! It seemed like a lighter crowd this year and I don't know what that can be attributed to. Having only the two events to compare, I'm not aware of negatives to mention.
I like everything about the WW dinner and it is really a highlight of the AM/VI, at least for me. The WW table is good and is a great way for us to meet people. Depending on attendance at the VI, maybe a drawing or contest would increase the number of visitors to our table.
David Kinkead - 2013
I was fortunate to be able to attend the recent IAL meeting and Voice Institute in Baltimore. I think the most useful (and fun) part of the VI was the interaction between the Larys, the students and SLPs. I enjoyed learning about the students and answering all their questions.
While the lectures were good for the students who do not get laryngectomy training in their studies, most of the issues covered were covered by my surgeon or my SLP. I also learned a lot about care and speaking from the experts. It was enjoyable to talk to the doctors who really know the subject of laryngectomees.
When I asked Pat Sanders if it was worth it to go to the IAL meeting she told me that it was something where I would learn a lot and meet some very nice people. She was right on both accounts. I urge everyone that has the means to plan on attending the conference next year in Dallas.
Loyd Enochs - Dec 2009
Evansville, IN (home), Mechanicsburg, PA (work)
I have only attended one Annual Meeting/Voice Institute, in Kansas City, and the most important/useful part of the program for me was the visit to the KU Medical Center, and the clinical evaluation. That was by far the most significant as the advice and assistance imparted was invaluable in my being able to use HME/baseplates for more than 10 minutes at a time. Between the physical evaluation of my stoma, advice on what my stoma anatomy translated to in terms of what to look for in a baseplate, and recommendation of how to tweak the installation of the baseplate to best fit my neck, I left that one session with breakthrough knowledge. I used it to get me back to work less than 9 months later (having doubted that I would ever be able to work again).
If only one event from the VI program was to remain, the clinical evaluation would be my choice of event.
Carl Strand - Radiation Therapy 1991, Laryngectomy 1993
I had attended six Voice Institutes as a Laryngectomee Trainee before this year's Voice Institute in Towson. There was an eight year gap from Burlington to Towson.
At all previous Voice Institutes, I was paired with a Speech Pathologist plus several Graduate Students and we worked hands on with a small group of VIP's. At Towson, the Laryngectomee Trainees were working in a much larger group of VIP's and Speech Pathologists and the Graduate Students were not a part of our sessions.
I much preferred the earlier model where we formed something of a bond with the Students and the VIP's. I felt that there was little opportunity for the Students to interact with the Laryngectomee Trainees and as a result, their total experience was somewhat limited. I recall discussions with the Student Speech Pathologist in the past where they felt they had learned so much during the breakout sessions.
Elizabeth Finchem - DOS/ Nov. 2, 1978
The question has become: "How the Voice Institute will be structured/conducted in the future"?
Having attended countless week long seminars as well as the Voice Institute since 1979 for my own rehab and then training as an alaryngeal speech instructor I have witnessed what works and what has fallen short with changes that seemed like little adjustments to save money and time.
The best results for both laryngectomee (VIP - Very Important Pupil) and (LT - Laryngectomee in Training) happened during the years when teams of one or two VIPs and LTs were created for the week. The team had a Supervisor PhD/SLP, SLP students and a couple of observers that moved from one hotel room to the next. The team set realistic goals for EL, ES and TEP improvement. Something obtainable and maybe beyond if possible.
Some returned annually to continue improving their speech, and some learned how to help others back at their local club. Some started a local club to help the newest laryngectomees face to face. In recent years the speech breakouts have had too many in the group and too few instructors for this sort of personal attention. However, the TEP clinic does offer this sort of personal attention that hasn't been available to EL and ES users as in the past. This is a need that deserves attention.
Lynn Foti - May 2009
I was extremely fortunate to have a chance to go to the IAL this June. It has been a dream of mine for the 6 years I have been a lary, and thanks to some generous people I finally was able to get there.
I attended the VI, and thought it was great. I mostly loved working with the SLPs and the graduate student SLPs. I was very happy with how everything was coordinated, and got to know some of the people who worked so hard to make this fabulous. One of the nicest parts was when we all split into small groups and spoke one on one with the graduate students.
The entire conference was astounding to attend, the WW dinner, the IAL dinner, and the connections made with other larys. What a good thing, for any lary to experience. The VI gave me a lot of insights into issues I was not aware of regarding my own speech, and the way I deal with it. The absolute whole of the IAL annual meeting was the culmination of several years of trying to better my own life as a laryngectomee. I was able to go in the pool with the help of Bob Herbst, Tony Talmich, and John Isler... it was wonderful to go under water for the first time since my surgery.
On the whole, I was pleased with the Voice Institute and how it was conducted, learned some things I didn't know, even after all this time. I would recommend it to anyone. Thanks to the IAL, and WW, and The Lauder group.
Pat Sanders in AL, 1995
When I attended my first IAL in 1999 in Reno, the high points were meeting the people that I knew from correspondence and the greatest amount of time was spent as an LT at the Voice Institute. I worked hard, was exhausted from keeping up with all but came back so excited, knowing I would be back the next year when it was to be held in Nashville.. near enough for me to driveT
I was back at the Conference in Nashville..2000 but this time unwillingly as the new WebWhispers Vice President. We at WW had a big edge of sadness from losing our beloved Joe Casey at the end of 1999 and then losing his replacement Carter Cooper about a month before the TN IAL. We were still stunned. Again, seeing the people I had met the previous year was wonderful and I met many more from the Eastern side of the country.
At this stage, 20 years into being a lary, I have to say that visiting with the folks, old and new, is wonderful. I learn so much from you and am able to share it with others through WebWhispers. Speaking of learning, all the venders are great fun to see again and the new products are exciting. We have our standard Dinner for a get together.
I did ask about next year's VI if we might go back to have something like 10 minutes to tell the VI attendees what WW is and what we do. We are the perfect place for them to do follow up online about everything they learn there from the great programs and teachers we have. I want them to know about the Educational Library and the Email Distribution list where we ask question and get answers not available anywhere else...I want them to know about the Whispers on the Web newslettters with a professional column every month and the Speaking Out opinions along with stories about us and our interests. We have an account at Delphi Forums with message Boards, and FaceBook Groups growing by leaps and bounds. What we all learn there at the convention, we share here at WebWhispers.
Pat Sanders, President of WW since 2006
Rita Burfitt in NJ, 1994-1999/2000 lary, treated in NYC and NJ
First let me say that I have always recommended the conference and Voice Institute to laryngectomees, especially those that are new and/or having problems. I have always thought that the Voice Institute was such a good learning experience for both the laryngectomee and other speech pathologists. Having the "top" speech pathologists in this field teach the classes and help those with problems has always been one of the reasons that I have encouraged people to do the Voice Institute. I truly hope that never changes!
How are we going to have speech pathologists know how to deal with the many issues that laryngectomees have, if they aren't taught by the best? I have always been impressed with the speech pathologists, including those at this years conference. If this changes I don't think that new speech pathologists will attend. For them, there is a cost and being away from their patients. With the way things are going the medical institutions are not going to pay for the speech pathologist to attend the Voice Institute as continuing education. As far as I am concerned the speech pathologist is the laryngectomees' best friend.
I've been to the IAL conference three times and the Voice Institute twice.The first was Vancouver (2002), there was so much going on that sometimes I didn't go to the Voice Institute class because I wanted to go to the other session that was at the same time. I was new to being a laryngectomee and there was so much to take in...wonderful!
The second time I went was in Burlington, VT (2007). I did the Voice Institute again and this time I went to all the sessions. The only thing I did not do was the clinic since I did not have a TEP at the time. When others went to the clinic there were sessions for those that weren't going. Again, a wonderful learning experience.
At each of these conferences there were more vendors than this time. I am glad that those that came this year were the ones that seem to always be supportive of laryngectomees. They always take the time to explain the products, let you try them. They are well versed and knowledgable with all their products. What would we do without them? They are another reason that I always tell people to go to the conference. This is the one place where you can try different products, like the electro-larynxs. Most hospitals, speech pathologists don't have all of them to try out. The speech pathologists have to use the products "their facility" says to use. That isn't always the best one for the patient. With things changing in the medical world this is going to become a very important issue for the laryngectomee. Where else can we try out and see all the products? My thanks to our vendors!
I noticed that there were changes the way the conference was run this year. There was definitely something missing when I went to register. It wasn't the same welcoming feeling I got when I've been to the conference before. What's going on with the IAL?
I do have to say that the facility was great. The people at the hotel couldn't be more helpful. They were so accommodating. In fact, they brought a meal to Pat and I when we were sitting at the WW table, even when they were finished serving and wouldn't accept a tip. I can't say enough about them.
Needless to say, the Webwhispers table and all the people involved with Webwhispers should be applauded for all they do. I don't think Pat ever left that table. I was able to sit with her and truly enjoyed being able to speak with all the people we email with. What would we do without Webwhispers?
Honestly, when I got home from the conference I told my husband that I didn't think I'd be going again. It was great to see the people that I met before. It was wonderful to meet new people. That might be a reason to go again but there was definitely something missing this year. I can't put my finger on it but....
Rita in NJ
Jack Henslee - Class of 79, 88, & 95
I attended my first Voice Institute in Winnipeg, Canada back in 1991 and have been personally involved in the planning and management of 8 others. There have been several (some may say many) changes over the years and of course everyone doesn’t agree if they were good or bad.
In 1991 we reported on Sunday evening then began an arduous 5 day training marathon that started at 8:00 AM, and some days ran until 9:00 PM. Most of the lectures were divided into 2 groups; SLPs and Laryngectomee Trainees, then VIPs. A few sessions were attended jointly and several times a day teams would get together for hands on training (See Elizabeth’s response above). This was called a dual track and later evolved into a single track to save some money.
In 1999 or 2000 we decided to reduce the VI to 4 days instead of 5, and Dr. Ed Stone introduced the Hands On Clinics enjoyed today where SLPs could actually see or perform TEP changes for the first time, and laryngectomees received a free prosthesis for volunteering. This became the “new standard” for the VI and has continued through this year. It is currently unclear if they will do that next year.
A strictly personal opinion of mine is that the changes and cost reductions were necessary to survive financially and as long as they are well managed the impact is minimal to the overall mission. The clinics serve as a great learning experience but in return some great possible locations for the IAL Annual Meetings have been rejected because there was no clinic available in that city, and as a result IAL could not move around enough to make attendance affordable to more people, and some locations were just hard to sell.
A final thought is that in recent years some Voice Institutes have had more staff that SLPs in attendance. Of course the SLP students swell the numbers which helps reduce hotel costs and generates some extra revenue, but in reality probably less than 10% of them will ever see another laryngectomee. They are most sincerely welcome and we need to train them since almost no one else does, but I think the priority should always be the laryngectomee and the SLPs that serve us, and any change should take that into consideration.
Thank you for your submissions. Edits are used for length, clarity and to keep comments on subject of the month.
Staff of Speaking Out
25th July was my second birthday’ in this new life! And if I say so myself, I’ve come a long, long way from the moment in the early hours of Fri 26th July 2013 when I woke from my anaesthetic haze into a strange new body that felt like an exploding ball of nerves. I wrote about that day in my first column with Webwhispers - here’s the link in case you’re curious: http://webwhispers.org/news/May2014.asp. I won’t repeat myself further than to say, in the words of Charles Dickens: “It was the best of times, it was the worst of times.”
In common with almost all of you, much has been lost along with the easy fluency we all took for granted till the post-surgical wake-up moment. The main gain, from my point of view, is the lesson laryngectomy teaches in living with adversity. At first, curled up inside my little ball of anxiety, it seemed like all the goodness had been lost from life. But gradually, happiness found ways into my hide-away. At first it trickled in momentarily – via the touch of a friend’s hand, reading a card with good wishes, discovering the outer edge of anxiety where it faded into peace. Gradually the good times extended and I began to feel more confident that I could find some meaning in this new phase of life.
By now my psyche has come to resemble its old self, with its usual ups and downs. I’m living pretty much as I used to, and have recently been able to teach a meditation retreat again which is wonderful. WebWhispers has been a great support in getting me this far. I remember the first night I came across the website; my heart soared as I realised there was somewhere I belonged! And it was a thriving, successful, confident group of people that I belonged to. What an incredible joy and relief! Thank you WebWhispers.
And then the honour of being invited to write a piece for the newsletter – thank you, Pat and Donna. It was a great boost to my confidence and makes me think about Lary life more deeply. And it draws me out of myself to imagine others reading the piece. I’m hoping it stirs some fellow-feeling, and the lift we can get from knowing we’re not alone.
I’m trying to imagine you now – very likely you are a Lary, and so we share lots of challenges. Can I ask you something that still puzzles me two years down the road - how do you cope with parties?
Let me explain where I’m coming from. At my first parties I actually felt very happy, much to my own surprise. Maybe it was the happiness of just being alive, surviving major surgery. It didn’t seem to matter that I could hardly talk at all. In fact it was sometimes a bit of fun getting people to guess what I was trying to say using the electrolarynx. After all some good things are born of confusion - up to 2008 we had a Taoiseach (prime minister) in Ireland named Bertie Ahern who was renowned for ‘constructive confusion’. He made lots of deals by using such convoluted language that no one knew what they were signing up to! One of my favourites was when he side-stepped a probing question by blustering: “It doesn’t help when people start throwing white elephants and red herrings all over the place!”
If only Bertie had the added advantage of a noisy electrolarynx, he would probably still be Taoiseach!
I don’t have Bertie’s talent for political wheeling and dealing, but I can certainly manage to confuse people nowadays! Ironically, the fewer the words the greater the confusion, whereas people usually make some sense of what I’m saying if I go on and on a bit. They tune into the sound while I’m speaking, and even if they miss a couple of words, they can get my general drift. Also, I loosen up a bit as I speak. My confidence grows, and I think the tissues in my mouth and neck relax as well, making it easier to speak. So I have every excuse to become a longwinded, boring old fogy!
But short, snappy party talk is another matter entirely. Until fairly recently it didn’t seem to bother me much. The general buzz of the party made me just as happy as chatting would formally have done. However, at two parties over the past couple of weeks, this hasn’t worked. It’s hard to know what has changed. Perhaps I’m now expecting more of social occasions now that the ‘honeymoon’ effect of just being happy to be alive has now worn off, and any novelty effect of the electrolarynx. At the first party there were a few friends I knew well, but we couldn’t get any chat going. It didn’t help that there was lots of background noise and people coming and going. So the conversation never settled to a point where I could get beyond the clunky effort of the first words. I was OK with this perhaps an hour but then started to feel excluded and lonely. Then a few days ago there was a family party. I enjoyed seeing people, and busied myself taking photos and handing out sandwiches and drinks, and managed a few short exchanges that were either a bit of fun or somewhat meaningful. But again, after an hour or so I felt exhausted.
Perhaps this is one of the limitations of laryngectomy that I will have to learn to accept. If so, that’s OK. I have the great good fortune of almost 30 years of mindfulness practice behind me, and acceptance is the bread and butter of this practice. But there’s no merit at all in needless suffering. So if there are any ways of making party time more Lary-friendly I’d like to know! I’m going to put a question to the Digest on this when the newsletter goes out, so do chip in if you have any suggestions.
After all I’m heading into my Terrible Twos - so it must be party time!
On a holiday to north Wales, and on our way to the summit of Mount Snowden on the single track mountain railway, we paused to allow a train descending to pass, and I gazed at the towering mountains and deep valleys, and watched a tiny stream on its way to the sea. I marvelled that all this landscape had been formed by tiny streams like that one millions of years ago, carving this majestic scene. By the time we had reached the summit an hour later, I had formed this poem in my mind, and had made myself as that young stream racing excitedly to the sea, with all the exuberance of a new young life.
THE SONG OF THE SEA
My song was born in a crystal pool,
as my glacier mother wept.
My snow and ice, no longer cool,
melted and I was swept.
My song at first was a 'pebble' sound,
as I carried those friends with me.
They danced along, upon the ground,
as we played towards the sea.
Across high meadows, still with snow,
being kissed by drinking hares.
Leaping salmon, then diving low,
avoiding hungry bears.
Through dead woods, so white and still,
carving snowdrifts from the banks.
My song now sounds, oh! quite shrill,
as snowdrops nod their thanks.
I'm bringing life to all I pass,
the stately elk who plods.
I hear a vixen say to cubs,
"It's the nectar of the gods.”
I swerve round boulders, green and swift,
strength gaining all the time.
Broken branches above me drift,
in my currents foaming rime.
My gentle song is now a roar,
down rapids leaping high.
Such excitement as my wave tops soar,
as if to reach the sky.
And soon I'm joined by others,
all racing to the sea,
and we streaming band of brothers,
all joyous to be free.
Careless hurtling over waterfalls,
laughing through the mist.
Shouting at the canyon walls,
with all those rainbows kissed.
And so at last I reach the sea,
trying to join those adults grand.
But those massive waves keep ignoring me,
as they crash against the land.
I soon learn of the goddess moon,
as we swim towards her light,
but come the dawn, oh so soon,
the sun pulls us from her sight.
This sun I'm told, this life will end,
and I'll rise as a ghostly mist,
midst thunder, and the lightning’s rend,
compressed like a darkened fist.
I pray that on some mountain I'll fall,
as snow or new born rain,
to be wrapped in mother glacier’s shawl,
and then be born again.
Windows 10 is Finally Here
and the Chicago Mob is Alive!
If you are a Windows user you may have been following the recent developments surrounding Windows 10, but you may be just a normal run of the mill citizen with a real life to occupy your time. Either way it is now reality and will continue to add tasks to your on-line life...like it or not! With any new and major system update there will be new things to learn and in some cases work arounds to figure out and apply...such is the price we pay for our thirst for "new and inproved" tools.
Windows 10 is actually Windows...period! Any future iterations of the Windows operating systems will be done as maintainable releases and applied in the same manner that Microsoft has been sending out updates and fixes over the past 15 years. In reality we now have Windows as a service rather than the previous product type we have been used to.
This release has introduced new technology which we are told will make our lives easier, more organized and downright peachy keeno! We will have a brand new, built from the ground up, browser that Microsoft has named "Edge"...not Windows Edge...just Edge. Microsoft's plan for us is to have Windows be our user interface on all our gadgets ...PC's, tablets, phones, watches gaming consoles, etc.
Our gadgets will run a bit faster and last longer...since the new Windows will make better use of memory and other systems resources the demands on the hardware will decrease and thus not require new hardware every 4 to 5 years to keep up with the demands of the software.
There will be new menus and much more emphasis on touch screen systems. For now the ideas that Microsoft has presented sound like a direction for their latest product to be just what most users have wanted and been asking for since the flubbed debut of Windows 8.
If you have upgraded, why not share your thoughts on Windows in the Webwhispers Forum or in the WW Facebook group? We can all share experiences and learn from one another. The discussions have been extremely informative and helpful. Beside reading for yor own benfit you can help others to find answers they are seeking by adding your thoughts and experiences to the discussions. Make a plan to stop in at the Forum or our Facebook pages for more news updates and personal exchanges.
And for all of you who may call Chicago home...the Leaders of Chicago's city government have been looking around for some spare cash you folks may have...and they have found one way. They have begun taxing you for the enjoyment you get from Netflix and other online subscription services.
This has some direct threatening vibes to the rest of us... the news spreads and our beloved politicians dream up other online sites we visit and how they can profit from them.
Frank in NJ
The “Known” Cancer Survivor and the Workplace
Cancer provides each of us our own unique set of challenges. This is true for the patient, family members, /caregivers and cancer survivors. Simply surviving this disease is not enough. Life is meant to be lived and living a life well entails being self reliant, maintaining your own self respect, contributing, being relevant, helping and assisting others and leaving this old world just a little better than we found it.
Many of these goals, we achieve through work which, incidentally, also provides us with a way to make a living and pay the bills. Finding work is one of the greatest challenges I have faced as a cancer survivor.
The following are my observations derived from my experience as both an “unknown” and “known” cancer survivor seeking employment in America’s workplace. It is not meant to characterize prospective employers as uncaring and unwilling to consider the “known” cancer survivor for employment. The purpose is to focus attention on a very important issue which affects thousands, if not tens of thousands, of cancer survivors and any individual with an obvious disability who is seeking employment. This is from the perspective of a cancer survivor who has made that journey.
I make the distinction between the “unknown” and the “known” cancer survivor based on how we are perceived by prospective employers. I am not an expert on the Americans with Disabilities Act or the Hippa Privacy Laws but I had to become well versed in the legislation in order to pursue employment post cancer.
The ADA and, to a lesser extent the Hippa Privacy Laws, are essentially based on the “don’t ask ......... don’t tell” policy”. Similar to the policy of the United States military pertaining to sexual preference until the mid to late 1990’s. Prospective employers are prohibited from using an applicant’s previous medical history when considering them for employment. It is even illegal for the physician to divulge any inappropriate medical information during or after a pre-employment physical. I volunteer at the Cancer Resource Center in Houston, Texas and for a non-profit cancer support group. I have met and counseled many other cancer survivors of all types and stages of cancer. Rarely, with the exception of laryngectomees, would I have any idea of the individual's diagnosis or treatments.
I was an “unknown” cancer survivor between October, 2012 when I was declared "No Evidence of Disease" after successful chemo and radiation therapies and August, 2013 when recurrrance called for a total laryngectomy. During this time I applied for a job as an engineer for a major steel manufacturer. I wanted that job. I don't know if it had anything to do with my being hired but I certainly didn’t advertise that I was a cancer survivor.
Doing my due diligence prior to seeking employment post cancer I had discovered a number of cancer support web sites, including Cancer & Careers, who offered some very clever and innovative advice to job seekers on how to disguise the fact they were a cancer survivor. One question posed was how to explain blank spots in your work history due to the fact you were undergoingtreatment (chemo or radiation therapy) or recovering from major surgery and unable to work? Their answer was to tell the interviewer you had a family member who experienced a serious illness and you were unable to work due to the fact you were the primary caregiver. Not exactly a lie ...... but not exactly the truth either, is it? They offered several other little subterfuges to hide the fact you were a cancer survivor.
The good news for a laryngectomee is he has no need to bother with this as we need to be upfront with the "known" problems. The moment the laryngectomee walks into an office or a conference room for a face to face interview it is obvious the person has some breathing and/or voice differences. The interviewer(s) may or may not recognize that there is a hole in the neck, a stoma, nor do they often know what it is for. Sometimes there is scar tissue that can be seen. Normally right about now the temperature in the room drops about 20° and there is a subtle, and sometimes not so subtle, change in the demeanor of the interviewer(s). They do not know what they are dealing with and what difference this is going to make in what this person in capable of doing and likely the rules will not let them ask.
I state up front and unequivocally in any resume and/or cover letter I submit when applying for a job that I am a survivor of stage four (4) throat and larynx cancer but it is less scary to say or write that I have had throat cancer but I am doing fine now and ready to go to work. Based on the specific job description I have no restrictions on the type of work to be performed or do I require any special accommodations in the work place. I do have a voice that sounds like Rod Stewart on a bad day (I am a TEP user) but can be clearly understood and I communicate perfectly well.
So why this reaction from the prospective employer? Because cancer is a scary and frightening word. It strikes an almost primal, mindless fear and dread in the hearts and minds of everyone.
I am not a mind reader but here is my best guess of how prospective employers view “known” cancer survivors:
• Undependable – will be chronically absent and tardy due to past medical history.
• Inability to concentrate resulting in poor job performance due to cancer treatments.
• Make co-workers uneasym thus failing to integrate smoothly into the work force.
• Hiring could increase major medical claims and premiums premiums for the company
• Require the company to take the time and expense of refilling the vacancy sooner than would normally be expected due to prolonged illness or death likely increasing the company exposure to paying benefits.
Are these statements true? I cannot verify or refute them but it is an indisputable fact cancer is a major health concern in the United States and affects every segment of our society and the workplace is no exception. No doubt radiation treatments and chemotherapy has side effects and physically weakens us. One side effect is commonly referred to as “chemo brain” resulting in the inability to concentrate and forgetfulness. Most of these side effects are short term and hopefully would disappear prior to the time you are released to look for work.
I know of no evidence that cancer survivor’s attendance or retention rates are any better or worse than the general employee population but the cancer survivor who gets the job is not likely to leave to look for another.
Throat and larynx cancer is overwhelmingly the major reason for laryngectomy surgeries although congenital defects and trauma may also be a reason for performing surgery. Historically candidates for this type surgery have been older people either at or near retirement age and while that is still true, the older laryngectomees are living long lives after surgery, often 20 years or more. These people make up a lot of the volunteer force that is responsible for many good services. Volunteering gives us good recommendations in our resumes and also puts us out there where someone may see and appreciate our work to the extent of recommending a paid job.
Every cancer survivor “unknown” or “known” deserves the opportunity to contribute by being considered for jobs for which they qualify. We did not become cancer survivors by giving up or quitting. We only ask to be given fair consideration and not be summarily dismissed without a chance to prove ourselves, because we are survivors of a terrible and devastating disease.
J. M. McGoff
Houston, Texas Lary – August, 2013
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