Kirklin Clinic Head & Neck Cancer Group, Birmingham, AL
distributed by American Cancer Society
Pat Sanders, Editor
The Road to San Miguel de Allende by Joan Burnside
I was just days away from returning to this magical Mexican city, where I had volunteered as a speech pathologist, studied Spanish and enjoyed a continuous fiesta. Only the trip that actually happened ended in Houston at the MD Anderson Cancer Center. Instead of mariachis and margaritas, it was MRIs and medications. Instead of soaking up the rays in El Jardin, the town square, I would be soaking up radiation in the MDA basement. At the time, I felt relatively good, because I had dodged laryngectomy. I was to receive state-of-the art treatment, and since I was in such good shape for a cancer patient, I could be back to normal in months.
Almost a year later, after many complications, I was slated for a total laryngectomy, pharyngectomy and related skin flaps and grafts. Unlike many laryngectomees who are mortified about losing their larynxes, I welcomed it. I hated the smell of my adult formula that was my nourishment, and was barely able to squeeze out a word or two with my trach tube. My thinking, reading, writing, and even self-care had deteriorated, and I was longing for relief. I started researching, joined WebWhispers, the internet support group and began keeping a scrapbook/journal.
After laryngectomy, the improvement was quick. I was disappointed that I wasn’t able to speak better, but thought I could manage basic situations in English and Spanish. I planned on San Miguel in October. My dream had been postponed by a year and some months, but I was still going to enjoy myself again.
Then, in July, my teeth started breaking off. I knew of the possibility from reading on WebWhispers, but it was still unwelcome. The good news was that a world-renowned oncological dentist-medical doctor took my case. The work itself went incredibly smoothly and painlessly. But for almost every appointment that materialized, there were three or four cancellations. Every cancellation required torturous return phone calls to get back on the schedule.
San Miguel was off the horizon as Halloween, Thanksgiving and Christmas slipped by. Meanwhile my weight was dropping and articulation was very difficult. The combination of my low-pitched prosthetic speech with my horrible mouth was a sure fire way to frighten people, so I seldom left the house.
One bright spot, around Christmas, was learning to change my voice prosthesis by myself. I have zero depth perception and my dominant right hand had been impaired by a skin graft, but my speech-language pathologists prevailed. It took two long appointments to learn the procedure, but once I did, I felt absolutely liberated. I told the SLPs that I was going to Mexico in March.
After this stunning success, I began to feel that my unique situation of being a laryngectomee and a speech-language pathologist (albeit retired), must have some meaning, and that surely I could make a difference for others.
I ordered and read professional books on laryngectomy and swallowing and started on a project, to gather the most important tips for living as a laryngectomee. When I asked for tips on the WebWhispers list, Pat Wertz Sanders asked to consider them for the monthly journal, Whispers on the Web. I had been thinking of the “Top Ten” in David Letterman style, but it quickly mushroomed to a hundred tips when I added in my own experience and research.
The daily work helped to build my stamina and skills, and suddenly, I had a little book! Since I was going to the Texas Laryngectomee Association meeting just before I was to leave for San Miguel, I would take copies for stealth field testing. I got the books the day before I was to leave and the partial dentures (after even more cancellations) on the day of departure.
Home Free in Dallas! I had registered as an SLP so I could get the continuing education units for my California license, but I was also invited to serve as a subject for the education program. So I had people peering down my stoma, watching me cough and gag as a new prosthesis got inserted. After demonstration voice therapy, I became easier to listen to and more intelligible. I loved answering the student’s questions. This was also the first time I had seen prostheses in others’ throats, so I began to get a much needed visual perspective.
I was very busy analyzing all the alaryngeal speech I was hearing. It ranged from unintelligible to almost normal. Of course, many of the “almost normal” had never had radiation, neck dissection or pharyngectomy and were years younger, so my voice envy went away quickly. As I listened and spoke with my fellow larys, I did wonder why so many experienced laryngectomees could still be so difficult to understand and have so many distracting behaviors.
During other sessions I had a chance to talk with SLPs who were starting clinical programs in Dallas and far out West Texas. I encouraged several to try to arrange for observation at MD Anderson. I also heard of significant problems, many of which meshed with my own knowledge and I started thinking of ways to address them. Some of those issues include:
1. surgeon qualifications,
2. availability of speech pathology services,
3. financial and service issues with hospitals, insurance companies, and suppliers,
4. need for more extensive articulation and voice therapy,
5. research and technology in voice generation, and
6.getting more lary’s on-line so they could get information when they need it.
I donated three of my books for the International Association of Laryngectomees sales table and they sold! I gave some books away to the lead SLPs and heard some interest from a distributor.
One inspiring speaker had been to Mexico to work with laryngectomees. This motivated me in regard to my Spanish studies in San Miguel. But then, another detour sign appeared. I had to go to the emergency room, and missed some sessions. Even so, I wrote in my journal that night that this conference had felt like “the old days” when I was always surrounded by enthusiastic people who listened, shared, and collaborated to make a better world.
In those “old days,” I was an assistant superintendent in a seventeen-school district that covered several small towns in the Southern California desert. I had co-chaired a town incorporation committee, became a council member and then mayor. As president of the local community college foundation, I had led strategic planning and helped create the mindset for a fully developed college. I loved community events and went to as many as possible, often double-booking.
On my vacations, I traveled widely, including several trips to France. Eventually, after fifteen years in the assistant superintendent job, I wanted change and had been looking for another job. So when the district offered an early retirement program for all employees, I felt it was a gift from God, and I was the first to sign up!
I went straight back into speech pathology, part time, working with small children and elderly stroke victims and loved it. But after I lost an election, I followed Davy Crockett’s lead (“You can go to Hell, I’m going to Texas!”) Also, I moved my residenceto be near family, help care for my mother, and enjoy life in a college town, away from public life which had begun to wear upon me. Once there, I worked in the schools and had a very small private practice in accent reduction, but I felt a decline which I attributed to having lived through too much stress, to aging, to my own failings, and to living in Texas! Eventually I “downsized” my household and my professional work. Two separate vacations in San Miguel were the most enjoyable experiences I had had in years and I was determined to spend even more time there.
It was only after my recovery and the TLA meeting, when I finally felt like my old self, that I also finally saw the truth. My detour had actually started years before my trip to San Miguel was interrupted, years in which a furtive cancer was festering and slowly stealing my life. And it wasn’t San Miguel I had been detoured from, it was from my self, my very being, and from what I know how to do best.
Now I am utilizing my reclaimed self with my new knowledge and experience. First, I have been active on Web Whispers, and consider it the most important work I do. I’m going to see if I can get my local club members on-line so they can catch up on valuable information. Next, I’m educating myself by going to go to as many club and state meetings as possible, especially those with clinical programs for SLPs and students. I’m already planning for the IAL in Boston.
As for the book, Living the Lary Lifestyle, 100 Top Tips for Laryngectomees, it is
being published in installments on Whispers on the Web. I’m sending it electronically to WebWhispers correspondents who can make use of it the most. I am gathering material for a second edition, and I’m beginning a Spanish translation.
For the near future, the organizer in me is developing an agenda regarding the many issues that I have seen, heard of, read about, or experienced personally. I expect to be addressing at least some of them. I would love to hear from people who have ideas about what needs to be done by, with, and for the laryngectomee. My e-mail address is firstname.lastname@example.org . You may also write to me: Joan Burnside, 608 San Saba Court, College Station, Texas, 77845.
You may be wondering if I ever got to San Miguel. Well, we’ll see how my latest procedure, esophageal dilation, works out. It’s not really a detour, because I know I’ll come out of it with more “tips”! So I may put San Miguel off for awhile, maybe after the IAL meeting in August. . .
My Oral Cancer Scare (And Associated Issues)
by Dutch Helms, WebWhispers Webmaster
Late in November 2002, during a routine semiannual dental exam, my dentist noticed a small area of "suspicious tissue" (neoplasm) in my mouth ... at the back where the soft and hard palate meet. He recommended it be checked immediately by a qualified Oral Surgeon/ENT. A week later I went to the Oral Surgeon my dentist recommended who examined the tissues and diagnosed the condition as Leukoplakia.
An article on WebMD describes this and similar conditions as follows:
"Leukoplakia and erythroplakia are terms that describe an abnormal area in the mouth or throat. Leukoplakia is a white area. Erythroplakia is a slightly raised, red area that bleeds easily, if scraped. The seriousness of Leukoplakia or erythroplakia in each person can be accurately determined only by a biopsy, a sampling of tissue for examination under the microscope.
These white or red areas may be a cancer, dysplasia (a precancerous condition), or some relatively harmless condition. There are mild, moderate, and severe forms of dysplasia, which are distinguished from one another based on how abnormal the tissue appears under the microscope. Knowing the degree of dysplasia helps predict how likely the abnormality is to progress to cancer or to go away on its own or after treatment. Often dysplasia will go away if the factor that causes it is eliminated. The most frequent causes of these conditions are smoking or chewing tobacco. Irritation from poorly fitting dentures rubbing against the tongue or inside of the cheeks can cause Leukoplakia or erythroplakia. Treatment with retinoids (drugs related to vitamin A) can help eliminate some areas of dysplasia or prevent others from forming.
Most of the time, Leukoplakia is the result of a benign condition that is very unlikely to develop into cancer. About 5% of leukoplakias, however, are either cancerous when first found or are precancerous changes that progress to cancer within 10 years if not properly treated. Erythroplakia is usually more serious. As much as 51% of these nonspecific red lesions are diagnosed as cancer at the time of initial biopsy."
Given my previous medical history, the Oral Surgeon recommended an immediate biopsy and probable immediate removal of these tissues. We then attempted to schedule this surgery, but my HMO (TriCare Prime - an option for retired military personnel) rejected the request since the Oral Surgeon/ENT was "not on their list." I immediately asked if TriCare could please give me an Oral Surgeon in my area that was"on their list." Two weeks passed with no response. In that interim period, TriCare also notified me that my normal reimbursement for my Blom-Singer Voice Prostheses and Trach Tubes had been disapproved ... since they determined they were not "medically necessary." Finally, after about 2 1/2 weeks, TriCare called and said they found an "approved" Oral Surgeon located only a mere 180 mile round trip from my house ... in the middle of Nowheresville, TX.
This was the FINAL STRAW ... I had considered switching insurers before, because of similar issues, but NOW it was definite. Luckily, a viable option was available to me ... US Family Health Plan (USFHP). I applied the next day, was formally accepted within 5 days, and was put in contact with a new local Primary Care Physician, of my choosing, immediately.
In January 2003, I met with my NEW doctor who spent over an hour with me, assured me he could take care of my prostheses/trach tubes problem, and confirmed the presence of Leukoplakia. He contacted USFHP, who immediately ordered my medical products from InHealth and had them directly shipped to my home. The cost to me was a tiny copayment. NO HASSLE AT ALL. He also referred me to a local USFHP-approved ENT (in downtown Houston). I met in February with the ENT who confirmed the Leukoplakia diagnosis and said, "We need to cut it all out!" He initially said that, given my history, it may well be "oral cancer" and we should not screw around with it. Needless to say, I wholeheartedly agreed!! :-)
In short, I did all the pre-op "stuff" on Wednesday 2 April 2003 at Christus St. Joseph Hospital in Houston. The next day, I reported like a good soldier, at 0600 (AM) for an 0800 outpatient laser surgery. Had no problems explaining "stoma issues" and the operation went fine. I woke up around 10:00 AM with a very SORE mouth ... but the doc and nursing staff were there with GOOD NEWS. The tissues had been removed and the biopsy showed the tissues to be NON-CANCEROUS. So, even though my mouth hurt pretty bad, I was ONE HAPPY CAMPER!! Upon discharge later that day, I paid my USFHP copay of $25.00 and I was back home in my apartment by early afternoon ... taking pain meds and antibiotics. I had a follow-up, post-op appointment with my ENT on the following Friday, and have had semi-annual follow-ups since (with no problems.)
So ... two lessons learned:
(1) If you current insurer provides horrible service, then get a NEW ONE, if you can. I should have been SHOT for sticking with TriCare for so long. My new insurer, USFHP, is so much better I cannot even begin to describe it. (Note: USFHP only operates in a few areas and is designed to serve retired US military personnel.)
(2) If you develop "suspicious tissues" in your mouth, then get them checked immediately. They are nothing to fool around with ... especially for laryngectomees with a substantial "smoking and drinking" history. Also note that even if you develop such "neoplasms," they are NOT necessarily cancerous. Scary, yes, but NOT necessarily CANCER. But, if you get them, see the doc IMMEDIATELY.