Posted by: dave1949 | 2012/01/07

Tube be or Not tube be

With apologies to my buddy Bill Shakespeare.

 

Deb and I have reached a relatively momentous moment. When I first went for the therapy to get rid of my cancer I chose, at the suggestion of the doctors at Juravinski Clinic to go for mostly radiation therapy, 30 sessions, augmented with 3  dosed of chemo. THat went from mid January 2010 to early March. At that time they felt they had gotten all the cancer and I began what I thought would be a fairly quick recovery form the effects of the therapy.

Unfortunately it was not going to go that way.  During the treatment the doctors inserted a lovely little thing called  peg tube. (percutaneous endoscopic gastrostomy) This is a tube inserted through the abdominal wall straight into the stomach through which a liquid food supplement is poured to feed me. One of the side effects of the radiation therapy is soreness and blisters in the mouth and throat that makes chewing and or swallowing very difficult and or impossible. THis is so common that the doctors scheduled the tube insertion even before they started the therapy and indeed I needed it within a couple of weeks of starting. By late April however I felt that my mouth had healed enough to have it removed and was feeding myself.

There were still some issues. The saliva gland were affected so I had and still have much drier mouth than normal. The taste buds were also affected changing the taste of anything I ate. To this day almost anything tastes salty to me. I have even had stuff like a soft boiled egg which I know has absolutely no salt but it tastes as if I had liberally salted it. This however is diminishing and now things generally taste about how they should but a bit saltier than they really are.

Along with these minor problems however a more difficult one occurred. The muscles of the jaw were so badly harmed by the radiation that I started losing the ability to open my mouth. Several people who know me felt this was a definite improvement but by August of 2010 I could only open my mouth about 1 mm. I could swallow, liquids or even solids if I could get them inside my teeth but I could get virtually nothing solid inside my mouth.
In fact I was taking ibuprofen at the time and the only way I could get a pill in is because years earlier I lost a tooth on the right side to a misplaced kick from a soccer opponent. I could just barely get a pill pushed through the gap there by opening as wide as I coud and pushing the pill through with a finger. Ok for the drugs but less than optimal for general nutrition.

I was also feeling rather poorly, actually worse than I ever felt with the cancer and got the bad news that the doctors felt the cancer had returned and was causing the deterioration of the jaw and ill feeling I was experiencing. Dr Archibald, who I highly recommend if you ever need head or neck surgery performed an operation in August to free up the jaw and at that time reinserted another peg tube to aid in my nutrition while I recovered.

The good news is they found not cancer but a good deal of necrosis in the mouth and throat caused by the radiation treatments. The dead tissue was for some reason not sloughing off and disappearing as it should and was actually poisoning me. Somewhat like gangrene of the mouth. Traditional treatment for gangrene is amputation of the affected area but when that is your head it poses other risks that cause some long term difficulties. The upshot of all this was a lovely little thing called commando surgery where they essentially slit your throat to enable them to get at the area. Scrape out all the offending tissue with a roto-router and sew it all back up again. A residual infection in the back of the throat required an additional surgery in January 2011 to repair an eroded carotid artery and so to recovery.

SInce August 2010  then I have been depending on the peg tube to feed myself. The t5 surgeries I have had on my mouth and neck along with the radiation has damaged nerves and left significant scar tissue that makes swallowing difficult and eve dangerous if I’m not paying close attention and start choking on things.

On the social side I have the added benefit of drooling and slopping at times and am unaware of this because I have no feeling on the right side of my mouth due to nerve damage. My grand daughter and I can at any given moment play off to see who will make a larger mess. It’s possible she may outgrow this but for me it involves dabbing at myself frequently to see if anything is dribbling down my chin and hopefully getting it before it falls on my shirt.

Over the last month or so however I have realized that I am now able to actually eat enough soft food to maintain my weight. I still can’t chew much of anything but between yogurt, soft boiled eggs, soup and copious amounts of ice cream I can eat enough to keep my weight up. All you dieter out there can take a minute or two to curse that last line.

Deb and I however have decided that when I go for the next checkup later in February I’m going to get the tube removed. I have to do a better job of eating more nutritional food rather than so much ice cream but it will be worth it.

One, the tube stays in what is essentially a hole through your abdomen into the stomach and there is a constant worry about infection. Oddly enough the stomach acids and fluids do a rather good job of controlling this and when you think about it there is for everyone a straight shot hole from the outside world into your stomach through your mouth and throat. Yet in spite of the best intentions of all those trying to sell products to disinfect your entire world the body has very effective ways to control infection itself.

Two, I’ll be able to do a few more things like swimming. The hole is mostly waterproof and I can shower etc but water under pressure can penetrate and I’d hate to fill up with water and sink just to get a little exercise.

Three, I’ll stop feeling so much like an invalid. This might be the most important effect of all for me. We’ll see as time goes by.

A PEg tube for your viewing pleasure

This isn’t exactly the same as the one I have but its close. the little blue balloon at the end holds it inside the stomach. The blue triangular but is a shield to help protect the insertion spot.

 

My body is way better but this is about what it looks like in place

Drugs and or food can be fed into the stomach through this. Shotgunning beer however doesn’t work all that well. It takes me about ten minutes to feed in a litre of fluids. It is odd to sit with what looks like essentially an intravenous drip and feel yourself get full without tasting anything or swallowing.

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Responses

  1. Cancer seems to have taken a bigger-than-average bite out of you, Dave, but you seem awfully good-natured about the whole thing.

    Will you still have to limit yourself to soft foods once the tube comes out? Can you still taste food?

  2. Zoom, I can taste foods although the taste is off a bit form what I’m used to. My swallowing seems to be getting a bit better but i can’t chew very effectively at all so it looks like fairly soft foods for the foreseeable future.

  3. You do Shakespeare proud. I much prefer you language to his.

  4. Stomach acids is mainly composed of hydrochloric acid. Stress is also known to increase the amounts of stomach acids. ‘

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