It’s a strange thing when you are doing well means you aren’t doing any worse than average. I had my third review with the radio-oncologist the other day and he tells me he’s pleased with my progress. I suppose I have to take that at face value, but it’s hard when you realize that his standard is based on how bad most cancer patients feel at this stage. Since most people feel the same as I do or worse, he’s pleased because I’m not feeling worse than I am. My pain levels are increasing “pretty much on schedule” and he’s content to continue “farting around with various meds” until we find the combination that manages my pain the best.
I know that it’s my frustration talking but it really is hard to endure some days. I never truly appreciated how small changes in my life could make such a big difference. I haven’t talked much about about the side-effects of the radiation treatment, so now seems like as good a time as any.
The primary target of the radiation treatment is my throat, since that’s where the tumor was located in what was my right tonsil. However, since the cancer cells that originally blew the whistle were in a cyst attached to a lymph node basically everything from the Adam’s apple up to my earlobes is being bombarded to one degree or another.
Most noticeable is the area at the back of my throat, the traditional ‘I have a sore throat due to cold’ location; although in what can only be described as the biggest pain in the neck since the guillotine, nothing that would traditionally sooth a sore throat can be used in this case, as all of the traditional remedies will actually aggravate the condition. So no cough syrups, lozenges, citrus based juices, or dairy (yes that means ice cream).
What this all boils down to is swallowing hurts – all the time. Imagine the mother of all strep throat cases and there’s nothing to take for it except Tylenol3, in liquid form no less as liquids are a little easier to swallow than solids. However, the Tylenol elixir stopped working about a week ago and now I’m on another liquid cocktail of various pain medications. Fortunately, it can be mixed with juice so it tastes a little better (I’m using mango) but that’s really a moot point because….
Everything tastes like crap!
Actually everything tastes like tofu on wet cardboard. You see, the radiation has shut down both of my saliva glands, which means I suffer from a very dry mouth. Your taste buds require saliva to function properly, so now, due to that and the radiation thing nothing, and I mean NOTHING tastes the way it used to. Ice cream and all other dairy taste like paste, bread tastes like tofu, potatoes taste kinda like sucking on a wool blanket, you get the idea. The only thing that tastes normal are a few spices so right now I’m loading up on cumin and oregano just so there is a flavour of some kind.
Dr. Wright assures me that after the radiation treatments stop my saliva glands will heal and return to function, but never back to 100% so while flavour will return things will never taste quite the same. I will admit to a certain curiosity as to just what this implies. Will I suddenly like lentils? Will chocolate lose it’s appeal? Who knows? A friend who had this same situation had to have most of his tongue removed, taste buds included, and now just eats to refuel as there are no tastes left to him at all.
The dry mouth also has affected other things. I’m drinking a ton of fluids (4 liters + a day) to compensate and there is a special mouthwash that is a concoction of the good doctor himself that helps a great deal, but no fluid except saliva can replace saliva and so there are still things with which one must deal.
My dentures not fitting or tasting right is one. A few weeks ago they felt okay and tasted of nothing. Now they float a lot more and have a definite flavour that occasionally triggers my gag reflex. Lots of fun.
Spontaneous coughing is another one. Although that could be a virus that I’ve picked up on top of everything else, because the radiation has also compromised my immune system. My boss called me and told me to stay away from work today because he has something I don’t need to catch. I wasn’t about to argue.
The dry mouth, non functioning taste buds, and the hurts-to-swallow thing have left me with little or no enthusiasm for eating; which is bad because the radiation is burning up my energy levels which come from the good calories not the fat ones so actually I should be eating more than usual. I’ve lost 10 lbs since I started and that’s about the limit. They tell me I must gain some weight this week. Cue the protein supplements.
The extra fluids are of course giving my kidneys and bladder more exercise than they’ve seen since my college days. (Actually I didn’t go to college but my girl friends did so I went to a lot of parties.) This means a change in habits as I must now never, ever, bypass the opportunity to visit the loo. Even more fun I must say.
Finally; dry mouth, spontaneous coughing, perpetual sore throat and a tripling of the need to pee do not combine to make sleeping an easy thing to do. Especially since I need to sleep more to compensate for the radiation sapping my energy levels. Cue to sub-lingual lorazopam 1 mg. under the tongue before bed and while I do wake up three times a night to visit the room next door, I do sleep between visits. Thank You!
So, if I seem a little agitated from time to time folks, you now know the reasons why. Like most guys, I’m pushing myself too much and d0 need to rest more, but for the most part I seem to be handling things fairly well. But that’s only because I’m getting a ton of support. At church, at work, on the Internet and of course from my own dear wife Roberta, the emotional, spiritual, and physical support has been amazing. I can’t begin to express my gratitude.
When I feel my lowest in the midst of all this even just knowing how many people are out there praying for me makes a world of difference. I feel like I need to see this through just for them. And believe me I will see this through. I have every intention of participating in the 2011 Ride to Conquer Cancer with a yellow flag attached to my bike designating me a cancer survivor.
Oh wait… there’s one more thing. The radiation has also killed numerous hair follicles on the sides of my face, so the beard that I have traditionally worn for the last 20 years is now toast. Guess I’m going to have to get used to looking at this face… and so will the rest of you.
So thanks everyone! Until next time … Shalom!