HeadLines

Kirklin Clinic Head & Neck Cancer Group,  Birmingham, AL

distributed by American Cancer Society

Pat Sanders, Editor

September 2005



Two Unlikely Angels                                                by O. Jim Gill

 

The drive from NASA to Lake Jackson on Hwy 2004, is one of the most scenic back roads on the state of Texas unknown trails.  Except for one small town, which seems to be made up of two gas stations, one convenience store and a flea market, there is one refinery and one large truck (rig) hauling station in fifty miles.  The rest of the 49.5 miles is wilderness, U.S. Forest Preserve, and National Wildlife Reserve, with ponds, trees, and beautiful wildflowers, especially in the Spring. 

 

Well, my old Acura has traveled that road many times to visit friends who have now moved or to get my hair "done". The hairdresser, Cindy, said that chemo/radiated hair was very difficult to color and perm without completely ruining it but she managed to adjust her solutions, so I got the result I wanted which was a natural (pre-cancer) look.  All in all it was a nice day’s jaunt to go there!

 

Once there, everything was within 5 minutes of each other. I found a wholesale jeweler who would order Medical Alert Bracelets in 14K gold, gold-filled or silver, for whatever size and price I wanted to pay.  He also created several pieces of stones to cover my stoma, to wear for an evening out.  Anything from Blue Lapiz to fake Onyx (black shiny plastic which looks the same and is much less expensive.)  My one big splurge was a truly antique Cameo, circa late 1800's, that he found at an estate sale, surrounded by a thin gold rope, then a larger silver holder. And as my neck reduced in size, from being very swollen after surgery, chemo, radiation and removal of lymph nodes, he had reduced the size of my chains that held these charming pieces, so they fit just perfectly over the stoma.  He never charged for any adjustments.

 

So I started out at 10:30 the other morning; not too pleased there was an ozone alert with notices to "stay inside" but I'd inserted an old Barton-Mayo button to hold a filter to keep out some of the chemicals, and decided to leave my dog at home. Thank Goodness!

 

About 8 miles from my goal, I'd just passed a car and suddenly my car began to slow down, and slow down, and just as I saw the truck dispatching station in the distance, it quit completely.  I checked the oil, spark plugs, etc. and all seemed OK... I walked almost a mile from the road to the little dispatch building; and found a lady who could call on my cell phone to tell Cindy that I would be late. My Barton-Mayo button was too long, and with it inserted, I had no airway to talk, so I had to pull it out to talk and occlude the open stoma with my finger.  I don’t do that well but I managed to get my messages across. I had left with an hour to spare but by the time I got a tow truck and got there, I'd be an hour late. Cindy was charming.  This had happened only once before in four years, so she wasn't upset by my delay.

 

After I was towed to the only dealer in Lake Jackson (there was a sign "Christ Lives Here"), he was clean, neat, efficient, honest; and drove me to my hair salon.  Since I was now running two hours late, I had to squeeze my pedicure between colors on my hair; then squeeze my watch repair at the jeweler between another color session.  In the nail salon, I met a lady whose Dad had just died of cancer. She was telling me about a watch he'd given her that had stopped and she didn't know if it needed a battery or was broken.... I said: "I know the right place; just one door past the beauty salon.”

 

So she came in to check that out while I was there looking at a new Medical Alert Bracelet (my blond highlights were processing) and I pulled out my Barton-Mayo button, so I could talk to her; and accidentally pulled out the prosthesis, too!

 

I had no supplies.  No extra prosthesis, let alone any tools. No gel caps; no catheters to keep the TEP puncture open; nothing... I tried to shove it back in with the blunt end of a ball point but it wouldn't go in and caused it to bleed, and then the prosthesis slipped and dropped into my trachea, (felt like all the way to my sternum).   I leaned over, upside down to try to cough it out and, luckily, it finally fell to the floor.  I realized I could not get it back in without proper tools and remembering how long I was mute when my doctor waited for the old hole to heal completely before making this new TEP, now 8 months old.... I had fears of it closing up and not being able to do another.

 

I asked the jeweler, Paul, for ANY kind of rubber or hose or anything to put through my prosthesis (TEP) hole to keep it open.  He found some very stiff, almost wire-like hard yellow tubing, only about 1/16" wide; but it did go in and would hold the puncture open so we taped it down. Meanwhile, my hair was still wet and, about that time, the car repair called and my car was ready; but I was in no shape to go get it.  Without a thought, Paul said, "Don't worry, I'll close up shop, put a sign on the door and my assistant and I will get your car!" He sent me back to Head Waves to finish my hair; while they dashed after my car before that shop closed!

 

Cindy finished my hair while I cried.  I had left home at 10:30AM, two errands to run just an hour drive to Lake Jackson and now I was worried about Lady, my sheltie, being locked in the house all day.  I finally arrived home at 7:30PM and Lady was really ready to "go out"!

 

That night, I did get a small catheter through the puncture but I was so worn out; I just went to sleep.  The next day, I spent the whole day re-dilating from 12 French for 1 hour; to 14 French, then 16 French, and then 18. Finally got an old prosthesis that I'd cleaned and got it in my TEP using great force! I had no gel cap, only a little lidocaine (liquid) I used with my "bougie" for esophageal dilation.  After the prosthesis was securely in place, and I tested by swallowing plain water, it worked without leaks, and I could take my pills again.

 

It was frightening and stressful and I'll never leave home without my supplies again, no matter how short the trip!   I'd planned on taking all that equipment to Boston and on the cruise but who'd have thought something that bad would have happened on a one hour drive...???? If my car hadn't been broken, I could have just "left" and gotten home in a hour and probably re-dilated it without too much trouble.  But I had no car when it happened, and by the time my hair was finished and  the jeweler had gotten my car; and I'd gotten home; it had closed up...quite a bit...

 

Learned a good lesson, folks.  I'll NEVER go anywhere more than 15 min. to the grocery store without ALL my tools and equipment; and spare parts.  .This was only my second trial after learning to do it myself; but I think I'd rather have died than gone to an ER and gotten someone who wouldn't know anything about TEPs.

 

I would not have made it without the help of my hairdresser and that wonderful jeweler!  They were truly unlikely angels who went out of their way for a "sometimes" customer.  I don't even live there nor do I see them more than 3-4 days a year; yet they went out of their way to help me! I was so touched!  God was watching over me!  And I learned a very, very, important lesson about planning to be prepared for anything.        

 

 

Ten Years of Larydom                                    by Pat Sanders

 

March 31st this year was the 10th anniversary of my laryngectomy surgery and while talking about that with my son, he said, "You know, it could have been different; your cancer could have been recognized earlier or the radiation could have gotten rid of it but, considering the alternatives, it all worked out pretty well."  And it did. I can’t rave about having had cancer and a laryngectomy, which cost me a number of things I liked having, such as a good natural voice and an excellent sense of taste and smell. I might have preferred being able to breathe through my nose but there are were some disadvantages to breathing all the pollens in by the sinuses.  I have a pretty good voice (and an AL backup), can get whiffs of odors and have a fair sense of taste…enough to enjoy foods a lot. 

 

I do like some of the new things that have happened to my life since my laryngectomy. I do like being alive and these are good times that would never have happened without the surgery.  Of course, I will never know the kind of life that awaited me down the main road I had been traveling if I had not gotten cancer.

I did some thinking about that, not what I lost or “might” have lost further down that un-traveled  road but what I gained after following the one I did.. First thing I gained was a computer and I don’t know that I would ever have gotten one.  But here I sat, freshly home from the hospital, trying to learn to hunt and peck words to fax to my son each day so he would know what I needed him to do for me and to let him know that I was all right. Then I gained, with much hard work, enough knowledge to operate it. Six months later, I was also speaking reasonably well with a Servox and had joined CompuServe where, in 1995, the cost for 5 hours a month online was $9.95. Being online 24/7 was unheard of. Those 5 hours a month were precious moments in which to download my email and then get offline to read and type. Not many people I knew had computers at that time so there wasn’t much personal email coming in. Spammers were unknown. I chose to spend some of the average 10 minutes a day (time allowed before going into expensive overtime charges), downloading information and emails from a CS forum called ROOTS to study offline. 

 

Without my situation being as it was, living alone with few communication opportunities,  and having that forced learning period of time, I would never have found or taken the time to try to find my ancestors. But I had time on my hands and this appealed to me.  Little did I know it could become an obsession and did for a while!  As I got enough information written down, I started going out to the LDS Family History Center and visiting the large genealogy building at the Public Library downtown.  It was quiet work and took me totally away from my worries and thoughts about cancer or voice. It was at the Family History Center Library that I had a lady come up to me and ask hesitantly if I had lost my “voice box”.  She said she heard me ask a question (using the Servox) and was so impressed.  When she was very young, her mother had to have a laryngectomy and never spoke another word the rest of her life. This lady had to wipe away the tears as she said that if there had been a “machine” like that for her mother, they could have talked and communicated with each other through those years.  This lady unknowingly was helping to shape my thinking about talking.

 

The “CS ROOTS” start of my genealogy interests changed my thinking about life and death as I learned to appreciate how my ancestors lived and died.  It changed my thinking about names, too.  I became just as much a Milam, McCrary, Ausborn, Bennett or Harmon from my mother’s side as I was my birth name of Wertz. On my father’s German side, it was several years before I was able to find names from Germany in the 1800s, such as Zimmerman and Burger, as part of my father’s ancestry and I now smile as I hear any of those names I mention (plus many more) and think, “That’s where I came from.”  Or “Those people are probably distant cousins.”

 

In the meantime, I joined the CS CANCER forum and became active there.  I could hardly wait each day to download what was going on in both forums.  I made friends in the CANCER forum and met (online) a half dozen larys, some of whom are still friends and are also active in WebWhispers or the IAL.

 

Less than a year after my laryngectomy, I was in a local support group at Kirklin Clinic and had started a small newsletter that I called HeadLines.  Never in my lifetime did I expect to write for the public but, if I didn’t write about us here in my area, who would?  I had grown up hating to write anything.  I would rather have returned gifts than be forced to write the “Thank You” notes my mother insisted had to be done. 

 

So here is another big change in my life brought on by having had the laryngectomy.  I started to write.  I had always made pretty good grades in English classes and grammar in school (far better than the history that I now love.) and, being ahead of the lesson, would sit in class with my novel hidden behind the classroom work.  Reading, yes!  Writing, no!

 

From writing for the newsletter, I began to ask other people in our support group to write and they would ask me to check grammar and spelling. This is where my lifelong habit of avid reading paid off. I recognized when something didn’t look or sound quite right and, while my writing was getting a “little” better as I continued to work at it, my editing was where I was finding a home and a challenge I enjoyed.

 

That’s how the first year or so went and through these new friends at the Cancer Forum, I heard of a new site put up by “some guy” called Dutch.  I have now been working with Dutch, and am celebrating 8 years on the site now called WebWhispers. 

 

I like my life, my work and my friends, some old, some new, and my horizons have expanded gradually to having friends all over the world.  I don’t know what the next ten years will have for me but they can hardly be any more interesting than the last ten.  It might not be that way if I had not had the surgery and I am blessed that all of this worked out so well for me… up to now. We never know about tomorrow but, then, nobody does.

 

********************************

ONE YEAR AWAY

 

Start planning now for next year.  The IAL 2006 is going to be nearby for us Southeast residents and handy to get to for people who are flying into a choice of several airports, including the big New Orleans airport nearby.  The location is Biloxi, MS, on the beautiful Gulf of Mexico. Date is August 9-12.  There will be a lot of information coming out later but Whispers on the Web, monthly newsletter of WebWhispers, found at http://webwhispers.org/   will be featuring articles about Biloxi and surrounding areas, plans for the Annual Meeting – Voice Institute, and special places you will want to visit with a little history of the South thrown in.

 

We already have a web page for the cruise out of New Orleans leaving on August 13th

http://www.webwhispers.org/pages/cruise/WWNOCruise06_1.htm  We have a gorgeous ship that is now based in New Orleans, the Carnival Conquest, which carries about 3,000 passengers and visits Jamaica, Cayman Islands and Mexico.

 

We are accepting reservations now with a deposit of $25 per person or $50 per cabin. Contact our travel agent to make arrangements to join us.

Peggy Byron, Cruise Vacations

1-205-995-0036, 1-800-844-5785, FAX 1-205-995-2063

Email: CDByron@earthlink.net

 

 

Kirklin Clinic Head & Neck Support Group Meetings

No meetings until further notice

In the interim, we suggest that you join WebWhispers if you have an email address.

We are invited to attend an All Cancers group with a luncheon every month, third Tuesday, 11-1.  Call or email Pat Sanders if interested in either of the above. 

Birmingham, AL:  Pat Sanders,   205-980-8416; pat@choralmusic.com

                                                                                                                                                           

Kirklin Clinic Otolaryngology :        205-801-8456 FAX

Glenn E. Peters, M.D.       Glenn.Peters@ccc.uab.edu

William Carroll, M.D.           william.carroll@ccc.uab.edu

Nancy Lewis McColloch, Speech Pathologist ;  205-801-8460;  nlewis@uabmc.edu          

For cancer information call 800.ACS.2345 or visit our Web site at www.cancer.org

American Cancer Society in Birmingham:   nprice@cancer.org

                                   

WEBWHISPERS - INTERNET SUPPORT GROUP FOR LARYNGECTOMEES  http://webwhispers.org  is a site with helpful information on what to do before and after a laryngectomy. It includes educational sections on larynx cancer as well as a complete Library of Information, lists of Suppliers, the monthly newsletter, Whispers on the Web, and HeadLines.  Laryngectomees, caregivers, and professionals can meet on two different e-mail lists to exchange messages, ideas and support    This is the largest internet support group for laryngectomees and is a member club of the IALThis group also sponsors a cruise every year with other larys, families and friends. This year, we sail to New England/Canada from Boston following the IAL Meeting.

 

The Official site of the International Association of Laryngectomees http://www.larynxlink.com  has all of the current information on the IAL, plus many newsletters from all over the US (including HeadLines for the last two years).  Information is always available for the IAL Annual Meeting and Voice Institute.

 

A Laryngectomee site from the United Kingdom    http://www.laryngectomees.inuk.com  presents information from all over the world and HeadLines newsletter is carried on their site under Letters from America. They have all HeadLines since 1997