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Dancing with RonSunny Bakken
MEETING – June, 2000
Ron was a pretty independent guy, single 20 years, retired Navy Chief. We had both been married before. Both of us said, "Been there, not sure if I want to do it again." Ron was country all the way. Knew all the "old" country music and was a great dancer. I was into line dancing and newer songs but I loved dancing with him and he taught me to two-step. He would ask, “Who’s singing that old song?” I would answer, “I'm from Hawaii; not a whole lot of old time country on the radio.” And, we would laugh and dance. He had been battling a sore throat for some time and another doctor confirmed he had Squamous Cell Carcinoma on his false vocal cord. Options were surgery, maybe not preserving the vocal cords, or radiation and he opted for radiation, a massive amount of 70 treatments. Not being his wife, being unable to talk to the radiologist about problems was difficult. He was a small guy to begin with and I could see he was losing a lot of weight but he fought this until he realized that he could no longer swallow and was living on pain meds. The doc decided he had to have a stomach tube and it was placed as an out-patient procedure. He was so sick tht night and the home nurse never showed about the tube. It was a house of horrors and the next day Ron was in the hospital, where they found his system was shutting down and every level was below normal. He was in for a week, and the first evening he was home, he had a formula pack on a pole (like you see IVs hang from); it had a machine that was automatically "feeding" slowly. A home nurse came in and showed us, his son, who lived with him, and me how to prepare his meds for his tubes, change the formula bag, set the machine. He was on his way to finish radiation and, then, recovery. But the after effects of the radiation were terrible. No one told us the problems that would crop up. The burns, inside and out, the loss of his saliva glands, dry mouth, the change in taste and eating. We got married in May 2001. Things were good, even great. Still dealing with the radiation effects, but scans were good, nothing showing up and we had a good year and half. He loved road trips, we took one across country to his home state of North Dakota, and went to Minnesota to visit his mom and sis. By late 2002, his throat was bothering him and he was not eating much, mostly oatmeal, cream of wheat, soup - what he could tolorate. Finally, after much bugging from me, he went for a scan in March and the cancer was back in the same place. We saw a ENT (ear nose throat); prognosis was not good. A total laryngectomy was recommended and the surgery was explained. When we left the doctor’s office, we were both in shock that he was going to have major surgery and no voice. We headed for a local casino's coffee shop there in Las Vegas, to have something to eat, to talk, and to contemplate. While walking toward the coffee shop, we saw a gentleman walking toward us with what looked like a speaking device. The same thing the doc had just shown us a picture of. We looked at each other and Ron said, "I'm going to talk to him." This gentleman had been a laryngectomee for 20+ years. He told us not to worry, you may not have a voice, but you can still make yourself heard! Once we got used to the sound of his EL (electrolyarnx ), it was easy to understand. Talking to this man must have been a gift, because some of our fears eased. On April 12, 2003, Ron went in for surgery with a voice and 4 hours later he had none. He recovered well and came home 4 days later. Home care showed me how to care for him. Ron again had a stomach tube but not for as long this time. Soon, he could drink the formula. That kept his weight normal and the nutrition in balance. He would still try to eat once in awhile - eggs, soup, things like that. A speech language pathologist (SLP) made visits to the house to teach Ron how to use the EL. She was another gift for us as she started meetings with other laryngectomees in the area, ones she had treated. Soon a laryngectomy club was started and is still going strong. The club members would go to nursing schools to explain exactly what a laryngectomy was, how the breathing system has changed and what it means to live a life as a "lary". Not all of this was easy for Ron. He was very embarrassed at first to talk in public. People have a tendency to do a head swivel when they hear this strange sound but he got better and more confident. Things were different but we were very happy. Before his laryngectomy, I did some searching for information. I found a wonderful web site, WebWhispers, a nonprofit group, which was founded by a laryngectomee. We both became members; it had an email list and a website for information. A wealth of help and shared experiences from others, who have been larys for years, was available and this email list had people from all over the world. August 2004, scans done, as routine. A spot was on his right upper lung and on his tongue. To our horror, the biopsy showed cancer - the same type. Chemo started. Six weeks, once a week. He did well, no sickness and they monitored him closely. Ron was not a vain man except about his hair. He had dark, thick hair. Before chemo, he got a buzz cut. One day when I came home from work, he had a fresh razor and said you have to shave my head. This was spookier than taking care of his surgery site. Scans were done again and the spot on the tongue was gone, but the cancer in the lung, while it had shrunk, was still there. Another round of chemo was done. This time he lost every hair on his body. They say the hair comes back differently and I've seen the effects on others. Ron's did, thinner and straight as a stick. He said, "Oh, well, guess I can't be vain about my hair anymore." He always had such a good outlook on everything. February 2005, scans. Wow, everything looks clear! With cancer, they progressively move the scans out - 3 months, 6 months, a year. Next scan in June, the spot was back on the lung, bigger. It was too close to the area radiated before and the chemo hadn't worked, so surgery was scheduled. Ron was worried more about this surgery than the laryngectomy but the surgery went well, no cracked ribs to get to the site. Hospital stay was not a good thing. He picked up an infection, which kept him hospitalized 3 extra days. He came home, somewhat sore but glad to have it over and, again, started healing. One of our road trips had been to Southern Oregon. I loved it and so did Ron so we talked of moving there. As long as the snow didn't stick, he could deal with the occasional snowfall. He put his mobile home up for sale in September 2006, not thinking it would sell fast. Within three weeks he had an offer. We weren't ready to move yet, so a short term apartment that would take the dog was found. I continued to work and Ron and his son took a trip to Oregon in October to check out places. The second day he called me at work, found a mobile park, out in the country. Would I like that? It was a small community way out in the country with deer and rabbits. That night talking to him, he had also found a mobile home, a model. I looked it up on the Internet and it looked perfect. Arrangements were made and notices were given. People at work couldn't believe I let my husband pick out a house without my seeing it. That's the thing, we thought so much alike and he was right - I loved the house. December 2005, we made our big move to Oregon. We got here in the middle of one of the wettest winters they've had in years and were starting to get settled in, when a neighbor stopped by to introduce herself. I will forever be grateful that she did as Sue and Gary (her husband) became my rock later. During the spring and summer, Ron and Gary built a small deck off the carport. We would go out in the morning and enjoy the morning sun and, in the late afternoon, we watched the sun set over the mountains.
Part 2, May 2008: MORE CANCER AND WORKING WITH HOSPICE |
Strokes can be Sneaky
To read more about the personal experiences of a laryngectomee's stroke and rehabilitation, our Whispers on the Web author, Vicki Eorio, wrote a series that started in our September, 2007 issue. You will find them under "Vicki's Midnight Train From GA". |
FUNNY
I received one of those “funny” e-mails from a dear friend the other day. You know the kind I mean…they circulate through cyber-space with impunity and most are pretty forgettable. This one stuck in my craw. It was kind of funny but mostly it was disturbing. It was called “Why Old People Rock” and was a series of snapshots of old people. Some did show “old people” who rocked…like the proud woman in her PJs standing in her living room with a shotgun in one hand and a dead varmit in the other. I especially got a kick out of the rosy cheeked grandma with two fellows, who I bet were her sons, on either side as she sported a paper hat that said, “Will Knit for Sex”. Those were joyful portraits capturing spirit and strength. There were others, like the couple facing the camera head on giving the universal sign of disdain, but they were not what bothered me. What bothered me were the photos taken on the sly. Not the ones where seriously cool old people smiled into the camera and said ‘This is who I am and I am OK with that”. What bothered me were the sneak attacks on fat old men with droopy underpants and skinny old women with dubious fashion sense. I pride myself on my sense of humor and I do not think I have missed something here. Some of these were not funny; they were cruel and stupid. I know for a fact that the friend who sent it is neither cruel nor stupid; actually he is both bright and kind, but he missed it. He is not alone. For those of us who make fun of everything and everyone who crosses our path…whose sense of humor tends toward the bizarre and the esoteric, nothing is off limits. Except that which is off limits. And what is off-limits is very personal. And sometimes surprising. My son and I are big fans of Dennis Leary. He is vulgar, brash, rude and very funny in a sick kind of way that not everyone appreciates. He takes no prisoners and does a riff on smoking and tracheotomies that is funny in a juvenile kind of way. But it is not cruel because he is not saying look how ridiculous those people are, he is saying, look how ridiculous I am. I am you…we are all foolish. What is off limits to me is making fun of people who have no chance to laugh with you. There are people who were born with a severely compromised sense of humor. They appear to be normal in every other way, but their funny bone just doesn’t work. I am not talking about these people, tragic souls all. On the other hand, I don’t think anyone can turn a child’s death into a funny story nor will the descent of a bright and witty mind into oblivion ever be good fodder for a joke. There are moments of humor and insight in both, but. let us be honest, neither one is a laughing matter. I do not think gratuitous examples of “Why Old People Rock” is all that funny because, having spent a fair amount of time with people actually growing old, I have learned it is actually not all that fun, even under the best of circumstances. It is not, as they say, for the faint of heart. However, you do need a healthy sense of humor to survive aging and all the other trials and tribulations of life and even death. I think one of the best antidotes to all of this messy business is the ability to laugh long and loud at one’s self. But it has been my experience that laughter at someone else’s expense is neither therapeutic nor satisfying. It always leaves me with a bad taste on my tongue and a nagging suspicion that God will get me for that (and She invariably does!) From time to time there have been discussions on the List about how larys are portrayed on TV and in the movies. Recently I happened upon one while channel surfing. I don’t even remember what show it was, but the main character was in a bar/restaurant complaining about the “smoking police” and how smokers are social pariahs nowadays. The guy next to him is smoking and as he turns to get up and leave, he whips out an EL and says “Tell me about it.” Stupid and inaccurate since the guy clearly wasn’t a lary (he was smoking through his mouth). It got a laugh, anyway and I wasn’t offended except by the inanity of it. The point wasn’t to make fun of the guy using the EL it was to make fun of smokers and their addiction. Something most smokers agree IS funny in a bleak and dark way. So here’s to grandmas who will knit for sex and larys who laugh out loud even if we do sound like that old cartoon character Har De Har Har. You know, Mom was right, it is not nice to make fun of other people, but it is very nice indeed to make fun of oneself. |
TEDPA and You: Making A Difference
What could be more practical than “free” communication devices? We all know “there is no free lunch”, so what’s the catch? If you look at your telephone bill you will see a line item called “Relay Service & Communication Devices Fund”, or something similar. The charge may be pennies; usually less than $0.10. My phone bill charge is $0.20 for “911 Service”, which makes my $0.04 for the Communication Devices Fund look like a bargain percentage wise. Few people read, understand, or ask what Ma Bell’s list of little charges is for. Let me fill you in on some little known help that is out there for you. My experience with telephone company “loans” of electro larynx equipment began in 1987 when I was teaching alaryngeal speech at St. Vincent’s Medical Center, Los Angeles, CA. This was before licensure laws went into effect. At that time, I was able to call the local telephone equipment office in Hollywood, and tell them what my student needed. An application was filled out and signed by an SLP or ENT, and the equipment was delivered at no charge the next week, provided he or she had a phone line. As people asked me about this program I dug into its history a bit. Although I was in LA, I was unaware of what was underway statewide with the help of laryngectomee leaders who were CAL members and officers. One man stands out. Ray Disinger worked for AT&T. He was a laryngectomee and was married to Mabel Disinger, who served as IAL President from 1983-85. She was a laryngectomee who had returned to her profession as an RN using a Western Electric electro larynx. They were both very involved in local, state and national laryngectomee support. Ray lead the way for CAL to go to Sacramento, CA to support a State Senate Bill requiring the phone companies to include electro larynxes in their loan programs. Previously, only the deaf were provided with the TDD devices, now call TTY, and Relay Services. Those in power at that time were finally convinced that the electro larynx provided a way for laryngectomees to use the telephone. Follow the money. While providing a service to laryngectomees the phone companies stood to gain more customers. Ray Disinger was one smart businessman. Soon there were Distribution Centers located around the state. The DDTP, Deaf & Disabled Telecommunications Program, grew to include not just deaf, but hearing, speech, vision, mobility and cognitive disabilities as well. Devices of all sorts were made available on loan to telephone company customers. “Free” meant on loan for as long as you lived in the State of California. “Free” was made available by all the nickels and dimes that poured into the disabled trust fund, which amounted to millions of dollars by the late 90s. In addition to the Relay Service Operators, a new program was launched to assist those with speech impairments called “Speech to Speech”. Specially trained operators listen to the speech impaired and relay verbatim the message to the person on the other end of the call. The operator may not participate in the call other than repeating exactly what was said. This service has helped those with weak voices due to MS or CP, as well as other impairments; including novice electro larynx users. In 1997 I was hired by the Deaf & Disabled Telecommunication Program to help promote the “Speech to Speech” Program. Instead, I ended up working more as an Outreach Specialist for the entire program, delivering presentations on how the DDTP could assist all disabilities. As an independent consultant, it was my job to contact organizations of all sizes and provide presentations and demonstrations of all the equipment available. The goal was to inform Lions Clubs, Rotarians, Chambers of Commerce, Senior Centers, Laryngectomee support groups, and others at Health Fairs about this “free equipment loan program”. My territory covered all of Southern California, from Oakland to San Diego, and from the Pacific to the AZ/NV borders. It was a fun job that turned into full time employment when the DDTP came under state management. It is now called CTAP, California Telephone Access Program. As the California program developed, I’m sure some thought I was bragging about my state. Sure, I was proud of what we had achieved, but more importantly I was trying to share what is possible with other states. To my shock and horror I learned that some states had no program at all. Some had very different programs based on income, need, and voucher systems. Sharing on WebWhispers helped to spread the word about what was available from state to state. I can only guess what brought about the movement for a national program like TEDPA. You may ask what is TEDPA, and how does it apply to you? It is the acronym that stands for Telephone Equipment Distribution Program Association. You may not be aware of it, but you are probably paying a few cents each month on your phone bill to support the Trust Fund that supports your state’s program, if you have one. If not, you can get some help from TEDPA to start such a program. If you go online and type in your state, i.e. CA-TEDPA, or AZ-TEDPA, you will find out what is available. If you just type TEDPA, their website will show the following information. “Our Mission"The mission of TEDPA is to convene for the purpose of information exchange and to assist one another with the administration of specialized telecommunication equipment distribution programs for persons with disabilities. The purposes of TEDPA shall be:
TEDPA National SurveysTEDPA conducts national surveys, and maintains data concerning states which have telecommunications equipment distribution programs. Data is maintained concerning, numbers served, disability populations served, equipment distributed, and distribution methodologies. This information is maintained largely for the use of TEDPA members, but a generalized version of the information may be released to the general public. Information released to the public may omit budgetary information, and shall omit any information which equipment vendors, manufacturers, or State governmental entities designate as proprietary.” In September 2007 TEDPA met in Montana. Their next meeting is set for September, 2008, in Massachusetts. If you, or your organization, are interested in improving the program in your state, please plan to attend so you can receive the assistance needed to make it happen in your area. Your efforts will assist numerous people in countless ways that you may never know about. Volunteer. Elizabeth Finchem |
To be a laryit helps to enjoy yoghourtand ripe bananasby Rosalie Macrae
I read a deceptively simple little haiku this morning in a magazine recipe section, full of things I cannot swallow, while mildly choking on a raisin lurking in my porridge. They are all little, these haikus, composed as you know, of three unrhymed lines of five, seven and five syllables.. And devilish difficult to write too. Try it. Anyway, I thought this one, copyright of one C Blackmore, a foodie and an invalid with a soul, I feel sure, was apt for any larys who, like myself, ache for the savour of squashy fresh bread, or the unique feel of a crunchy apple wedge going down your gullet. Sometimes they choke you and you have to have a tracheotomy but I haven't the statistics on that. This haiku says (and the placing of the words is as important as Tarot cards, and the font too, so this is a pretty type called Vivaldi) -
Taste. Like my beloved Spam. How I miss frittering it, since introduced to its exotic Argentinean essences by American soldiers who brought it in PX cardboard boxes to my father's pub during WWII, bribing him for a shot of under-the-counter Scotch. It deserves the capital. Spam. Like the C in Champagne. In France you can be locked up for life in the Bastille, like the man in the iron mask, if you just write the word without a capital. As in champagne. But even worse if you write Champagne about any old fizzy white wine which doesn't emanate from the vines in the pocket of France around Rheims where they make the real stuff. In the foyer of Moet & Chandon in Epernay, the fountain cascades Champagne all day. Well, until eight in the evening when all the staff all go home for definitely not spam, and lots of rough vin rouge for a change. Or to AA which has a healthy membership in Rheims. 'Je m'appelle Simone et je suis alcoolique.' 'Bon Soir Simone!'. Applause. I've found out that Spam even has its own haiku poetry club website. Just think. That man beside you in the traffic jam yestarday, rolling back his lips a bit fiercely might have been working out his haiku for the day. Beats obscentities. About the spam haiku though. These two are extracts.
I thought Martha Stewart's hell would have been state prison but they sent her to quite a jolly one I believe, too posh for Spam. And I confess to never having heard of John Belushi. But I have now. Very sad death of an overdose after a last meal of lentil soup followd by many substances. The obit didn't mention cold Spam canapés but then that's haiku poetic licence. Whatever, food is a god for most people, although they don't realise it until they are forced to be peg fed like some of us, or have our tea thickened to slices, (my personal worst) or stood over by neighbours while we eat their squash. Perfect, digestible, utterly awful lary food. They flaunt them, their massive zucchini, which they only grow to win competitions or give away. Be honest. Have you ever actually eaten a squash on its own? You sprinkle on as many additives as listed by law on thrift shop bottles of salad cream, to make the wretched green tubas taste of something. Now there's something. Oh salad cream. I miss it too, on top of the perfect spam fritter. In fact I will now try to do a spam haiku and decide, when I've composed it, on the best typeset.
That was a font called Curlz MT, every Dell has it, and very nice too, honouring all these chemical, deadly Es, banned by Ensure and the like. Maybe the occasional E-slip would make it more exciting. I used to sprinkle the vanilla one with Lee&Perrins Worcestershire sauce but it made my stoma stoon, as we say in Scoland, alias sore, throb. Not to be advised... This week my son-in-law is in New Orleans, interviewing, much to his surprise, some basketball Saints. He thought he was doing a 'freebie' travel piece for his London paper. The recovering city is eager to attract foreign tourists after Katrina and invited the British press to have fun and see the rejuvenation. I mention this because it weaves its way around to my favourite food. His boss, the sports editor, thought it would be a good chance for a story to go and interview some stars. My son-in-law has never been to a basketball game. It would be like sending an American sportswriter who has never seen football to interview David Beckham. Being a creepy ma-in-law, I texted him to have a po boy oyster special for luck. and inspiration. I'd forgotten that the lad has never knowingly seen an oyster, let alone eat one. He only likes breaded fish with crumbs so thick that you don't taste the fish. I will not start writing about oysters. I love them too much and would start a craving. They slide down the throat of any lary. Unless a complete vegan, poor thing. All these Tabascos and lemons and black pepper which are just pretentious and burn our throats, only mask the taste of this mollusc of the gods. Perhaps you may have noticed from the top of this column that I live in Colchester. Apart from being the oldest recorded town in England (not Britain) it is known throughout the gourmet world for its Colchester Native Oysters. Loaded on to planes all over the world, even New Orleans I wouldn't be surprised. Sadly I don't have them so often though. At $3.70 each oyster, Rosalie sucks mussels instead. A poor second for a mollusc. |
To: Editor@webwhispers.org
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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, |
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VP Internet Activities |
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WebWhispers, Inc. |
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We welcome the 43 new members who joined us during February 2008: |
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Margaret Abelseth |
Thomas W. Adamik Sr. |
Vangie Andersson - (Vendor) |
Donna L. Bolick - (Caregiver) |
Rodney S. Bolick |
Glenn Budd |
Pamela Sue Burns |
Janie P. Bush - (SLP) |
Sandi Cobey-(Caregiver/Vendor) |
David Coleman |
Michael Duran |
Paul Evitts - (SLP) |
Deborah Frazier - (Caregiver) |
Wendi Gibson - (MS,CCC-SLP) |
Stephen Goldman - (SLP) |
Larry Haddaway |
Kimberly Hale - (SLP) |
Vikki Hankins - (Caregiver) |
Danielle Haynie - (Vendor) |
Tom Helms |
Carl Hendrickson |
Ron Horn |
Jean Kaufman |
Arthur Kohout |
Katherine Kohout - (caregiver) |
Kamini Lemieux - (Caregiver) |
Carol Livingston |
Judy Mcfarling |
Karen McHale - (Caregiver) |
Anthony McHugh |
| Jeremy Meinhardt - (Vendor) Bartlett, IL |
Mary Myatt - (Caregiver) Mooers Forks, NY |
Sheila Navarro - (Vendor) Carpenteria, CA |
| Ann Oconnell Grande Prarie, Alberta, CAN |
Cheri Palmer Birmingham, AL |
Abdulla Sulaiman Dubai, United Arab Emirates |
| Patricia L. Thompson Cranford, NJ |
Otto Veltman Netherlands |
Kim Walker - (SLP) Edmonton, Alberta, CAN |
| Sandy Warren - (caregiver) Ardmore, OK |
Daniel S. Weber Cottonwood, AZ |
Jane Zehelein - (Caregiver) Rock Falls, IL |
| Theodore Zehelein Rock Falls, IL |
WebWhispers is an Internet based support group. Please check our home page for information about the WebWhispers group, our email lists, membership, or officers.
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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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