Kirklin Clinic Head & Neck Cancer Support Group, Birmingham, AL
distributed by American Cancer Society
Pat Sanders, Editor
WE’RE FINE, THE HOUSE IS GONE, AND THE CAT IS PISSED
By Bob Power
I guess I am among the lucky of the unlucky ones. Unlucky to have caught the cancer bug, I’m the only one on either side of my family to have ever received this prize, but lucky compared to some of the folks who have written of their experiences on this site. From what some of you have had to go through, it’s been a piece of cake for me. But on the other hand, I ain’t laughing either.
I have been in the tax planning, audit and preparation business for over thirty years, I’m 72 years old, a very young 72, I’ll have you know. I talk a lot during the tax season and my voice for years would be a bit raw by April 15th.
After the tax season of 2000 was over, the rawness wasn’t receding much but I didn’t think anything about it. I felt fine and was enjoying the relaxation of another season over and went about the slow part of my year.
About once a year, the sludge builds up in my ears and I have a routine of going to my ear quack to have him shovel it out so I can hear again. This time it was in October and, on the way out, I just happened to mention the raw throat. He brought me back in and took a look. Damned near gagged me to death with his little mirror. He found a small growth on my right vocal cord. He wanted to be sure of what it was so we did the biopsy and, sure enough, it was malignant. That led to thirty-three radiation blasts which ended in early January of 2001. I began to address the radiation doc as Dr Gag. He was as jittery as Don Knotts, the explosive expert of the old Steve Allen show. I’m sure a couple of you old stogies remember that show; it was the best one of them all. I didn’t mind the radiation, I had no ill affects from it, but Dr Gag was a bit much to put up with.
Anyway I felt pretty good about everything since the odds were ninety three or ninety seven percent in my favor of radiation ridding me of the stuff. Unfortunately, the odds do not, as many have reiterated on Web Whispers, have a lot to do with individuals. Later in early August of 2001, the hoarseness returned.
My ear ENT took another biopsy and sure enough the little devil was back. It wasn’t much of a discussion as to what to do, the right vocal cord had to go. He could do it with a knife and he also mentioned a Dr William Armstrong who was leading the way at the University of California at Irvine in using a laser for a cutter. I ask him what he would do. He said he’d go to Armstrong. Now that’s a pretty strong recommendation. So I took it.
This laser surgery had been pioneered by doctors in Germany and Armstrong had gone there to study under them. He has a tremendous reputation around here, and I think deservedly so. We did the surgery one morning and I was home by 2 pm the next day. He came in about 11 am and said if you can drink this cup of water you can have lunch and go home. There was no way I wasn’t going to get that water down; it went rather easily. I thought this has to be the last of it. I never did have any pain to speak of, nor much discomfort except for the nose tube.
My voice was a bit whispery; some of the ladies thought it was sexy but I figure they were just being nice to an old man. However, I didn’t ask them to quit. The absence of one vocal cord didn’t bother me and I continued my life, as if nothing had happened, for the next four years, except my political diatribes were somewhat less earsplitting.
On June 1, 2005, the hill across the canyon decided this was the time to slide. It came down, taking some twenty homes with it, filled up beautiful Bluebird Canyon in Laguna Beach and without so much as a howdy do, filled up the downstairs of our home and destroyed it. The top floor was sitting on dirt and the side walls had been pushed out. The next two houses up the hill were also so badly damaged, they would later be torn down.
It happened about 6 am which is closer to my bedtime than my get up time so we were in bed when the house began to pop and snarl. It sounded like large hail on the roof or gun shots. I went out on the bedroom deck overlooking the canyon and there was no canyon, just dirt and debris and trees falling over. The creek was gone. We barely got up the stairs and out the front door before the back of the house was lifted up and pushed closer to the street. We couldn’t catch “Boss” our big black cat so had to leave him. That was the worst part of the whole thing, he was so frightened.
Our bedroom was totally filled with rubble by the time we hit the street seconds later.
We were able to open the front door on our way out to the street level to escape. I closed it, by habit, and we went out in the road. A minute later I decided the door should be open so Boss, if he survived, would have a way out. It wouldn’t budge. I finally kicked the bottom of it open enough so a cat could squirm out. We just hoped he’d make it.
A friend let us homeless waifs use a rental down the street for a month to get our bearings and to be near when we had the house torn down. The city wouldn’t let us enter it so we had to pull it apart piece by piece, from the roof down to be able to get whatever was salvageable of our personal items. We retrieved just about everything from the top floor, almost nothing from the second floor down and nothing of my complete wood shop on the bottom floor. We had lived there thirty five years and I had redone every room from top to bottom over those years. It was a showplace.
So after a month we found an apartment in Dana Point and leased it for a year. During that year, I had my first case of Shingles, a mild case, and my first root canal. The year wasn’t going well. I guess it had something to do with the stress of the whole episode and we hadn’t seen anything yet.
Again I was in for the old de-waxing of my ears and, as usual, it was sometime in November 2005. I mentioned my voice was a little different somehow so he mirrored me again and thought he might have found something, so back to Dr Armstrong. He wasn’t sure there was anything but then again, he wasn’t not sure either. He said we could wait a little or could do another biopsy to make certain. I like certainty even if the news is bad. I am not patient enough to wait around, so he took a biopsy then and, sure enough, it was back.
We decided on another laser job in the same cord area to get it all this time; the date was December 19, 2005. He cut it deep and thought he’d gotten it all. Five days later I went home with a feeding tube up my nose; egad I hate that thing. I couldn’t talk nor swallow, so was constantly spitting out saliva, and washing my mouth out with ginger ale. In fact I came to like the taste of ginger ale so much I’m having one right now, with my friend Jack Daniels.
Later pathology said no, we may not have gotten it all. There were indications of cells on the edges. Well, well, well; here we go again.
This leads me to the episode of Christmas Eve 2005. My wife is a retired registered nurse; Nurse Ratchet I call her. Remember the movie “One Flew Over the Cuckoo’s Nest” with Jack Nicholson? Well, she was taking very good care of me, being pushy about what I was to do and when and how. I don’t much care for pushy, when I’m not the pusher. Yeah, I’m just like everyone else.
When you can’t talk back it’s really maddening, especially when you can’t find the freak’n pen and paper and can’t spell worth a damn. Sure enough it came to something akin to intemperate words, at least on one side.
So, Ratchet threw a magazine at me, hit me too. Me, a poor cripple sitting in my rocker with a tube in my nose trying not to spit every two seconds. I wasn’t sorry for myself, I was just pissed at this whole long drawn out festival. Anyway, I threw the magazine back at her and in doing so caught the feeding tube on my sleeve and pulled it clean out. Didn’t feel a thing but relief.
So Ratchet insisted we should go to the emergency room thirty miles away at UCI Medical. I figured there wasn’t a reason to be in such a hurry. After all I had already tubed all I wanted to eat (if you call it eating) and it would be nice not to have that thing up my nose for awhile. I won this one. Ratchet doesn’t drive the freeways and I wasn’t about to spring for a $170 round trip cab fare this time.
So the next day, Christmas Eve, we spent most of the afternoon in a crowded loud, sometimes screaming emergency room waiting for someone from my oncology team to show up and put the tube back. I’m trying to hide my spitting in a cup while all this hullabaloo is going on. Finally after half a dozen people, probably including the janitor, took a look at me one of my team showed up with a new tube.
Now if you thought Dr Gag was bad, try having a feeding tube jammed up your nose while still awake and not too happy about where you are anyway. I think it finally bottomed out on the fourth try. Then we had to wait for the X-ray guy to show up and make sure it had indeed bottomed. It had, so we were on our way home to celebrate with another can of Ensure for me and a big stiff drink for Ratchet; she earned it.
The pathology report was disappointing so it was back to decision time; we had the choice, do it now or wait and see what happens. This time it was serious, it meant a total laryngectomy and becoming a neck breather. Now, that is something to think about, so was the alternative. I did for about two minutes. I said lets get it done as soon as possible, I have to be ready for the tax season no later than the first of February. The hospital tentatively booked the operation for Jan 19th but had a cancellation and we were able to get in there on the 12th.
Since Ratchet doesn’t drive the freeway and that’s the only way to get to the hospital I took a cab. There was no reason for her to be there, not a thing she could do no matter how it went. She would find out on the phone from Armstrong as quickly as she would had she been present. It was just a waste of time to spend uncomfortable hours in that place. Besides she might catch something . . . maybe even another guy.
I was supposed to be there at 7 am but I’d been through this routine before and showed up around 8:15 and even then didn’t go to surgery until 11. That didn’t make me happy either. It was cold as the devil in that waiting lounge. I’ve always wondered if they do that to keep the smell down.
I was there a week and learned all about the morphine button. I didn’t really have any pain but I liked the buzz and the sleep. I tried taping the On button down but that didn’t work, it was automatic. So more or less I had a drowsy stay at Club Disease.
This time my feeding tube was inserted in the TEP at the time of the operation which was just fine, no pain no strain but the cuisine was the same old thing and I still couldn’t swallow or talk.
I happily left on January 19th, began doing taxes a week later with a pen, paper and feeding tube since I still couldn’t talk. Good old Ratchet answered the phone and interpreted for me, we got it done. The tension tensed with Ratchet and me but the care was the best you could ask for (she may read this).
About two weeks later the SLP slipped the feeding tube from my TEP, inserted a prosthesis and I began talking immediately. I admit I sound like a frog but I can talk. Now if I just could find one that didn’t leak the world would once again be rosy . . . even the tension has abided and the care around here is excellent as usual.
The tax season went well, we bought a home about five miles south of Fallbrook CA June 5th , just a year from losing Bluebird Canyon, and oh yes the Animal Shelter Police trapped Boss just three days after the slide right outside the front door. He was a bit out of sorts for a couple of weeks but is fine and sleek and is still THE BOSS. It was the best not to have to worry about him anymore.
Ed. Note: Bob Power had his surgery this year and lives in Fallbrook, CA.
MORE ON FLYING
On WebWhispers, where we exchange emails daily, we have talked about what special care to take when flying, especially when it is a very long trip.
Some good hints when we fly, taken from the Internet: http://www.flyana.com/sleep.html
Wear comfortable, loose-fitting, layered clothing. The body expands at high altitude and the temperature in the airplane is not consistent.
Avoid dehydrating drinks such as coffee, tea, colas and alcohol. They may dangerously dehydrate you in the dry cabin air. In addition, the cabin pressure doubles the effect of alcohol, i.e. two drinks on the ground equals one in the air. Instead, drink plenty of water starting the day before you fly.
Bring a cotton hankie, moisten it with your drinking water and place it over your nose and mouth during flight to create a personal source of humidity and also to help block the spread of germs. (For laryngectomees, dampen your stoma cover, carry a small spray bottle with water to mist the stoma area. If you use a small foam filter, cover it with a dampened cloth filter for more protection and moisture. Ed.)
Bring bottled water. Sip before takeoff and, if you wake up, have a sip of water, re-moisten your hankie, and go back to sleep. And if there's not enough bottled water on the plane, at least you'll have some. (The last times I flew, they didn’t have bottled water to leave with you, but when they came around with drinks, I asked for a drink, than added a request for water. Ed.)
Bring earplugs. Airplane noises can disrupt sleep. If you use earplugs, use a clean pair. Do not introduce bacteria into the ears. And use the soft earplugs or sterile cotton, which will not block your ability to hear announcements--there may be an emergency.
An important notice from: THE ASSOCIATED PRESS
WASHINGTON -- There is evidence that asbestos can cause cancer of the larynx, the Institute of Medicine reported Tuesday. Asbestos has long been associated with lung cancer and mesothelioma, a rare cancer of the lining of the chest and abdomen.
The Senate asked the institute, an arm of the National Academy of Sciences, to look into the possibility that other forms of cancer could also be related to the fibrous mineral once widely used for insulation.
The panel concluded there is sufficient evidence to connect asbestos and laryngeal cancer. It found nine studies that supported the connection. It also noted that certain cancers of the larynx - the portion of the throat containing the vocal cords - and of the lung are similar.
The disruption in air flow caused by the vocal cords could add to the chance that asbestos fibers are deposited in the larynx, the report noted.
The analysis concluded that the evidence is suggestive but not conclusive connecting asbestos with colorectal and stomach cancer and cancer of the upper throat. It said there is insufficient evidence to connect asbestos to cancer of the esophagus.
Kirklin Clinic Head & Neck Support Group
No meetings until further notice
In the interim, we suggest that you join WebWhispers if you have an email address.
We are also invited to attend an All Cancers group with a luncheon every third Tuesday.
Call or email Pat Sanders if interested.
B’ham: Pat Sanders, 205-980-8416; firstname.lastname@example.org