Its now been 5 months since we started active treatment for oropharyngeal carcinoma which included surgery, chemo therapy and radiation therapy. I am ‘back to work’, usually a sign that most things are back to normal, other than the obvious emotional impact that swirls in the wake of any cancer diagnosis. In my case, I am also very disappointed in my current Quality of Life to the point that it is becoming a focus of potential depression.
- My tongue still doesn’t work the way its supposed to. My tongue still feels swollen, pulls to the right and generally is not able to do what it is designed to do. I remember the ‘medieval’ themed movies I’ve seen and the books I’ve read where the bad guys have used the threat and the reality of cutting out one’s tongue as a form of torture. Okay, so you can’t talk then, right? There is so much more to it. At this point in my recovery I can’t rely on my tongue to wipe away the food from my teeth, to clear my mouth, or for any of those funny little oral hygiene things that we take for granted. Tomato and blueberry/raspberry seeds are a major pain. Sticky stuff, including peanut butter becomes a challenge that I avoid. It also gets tired and then gets in the way of chewing, complicates speaking and generally becomes, for me, the ‘elephant in the room’. I know that something is wrong, that my tongue feels swollen. Does anyone else see and or hear it? I know that my lack of confidence in my tongue makes me manipulate my jaw a bit more; I feel that anyone watching would wonder if I’m chewing my cud, or what…
- My lower jaw, under my chin, is still numb. It feels like I’m wearing a chin strap, all the time. And, I tend to ‘clench’ almost constantly…daytime bruxing to go with the bruxing that I know I’m doing at night. At least the ‘clench’ has helped to realign my teeth…
- My taste buds are mostly back in business, but there are still gaps; not huge, but gaps nevertheless. Dark chocolate tastes like coffee grounds. Strong chardonnay has a suspiciously kerosene-like after taste. Ya, I know, I probably shouldn’t be drinking alcohol at all…
- The reduced, sometimes non-existent saliva flow. We’ve gone from thick, sticky saliva to virtually no normal flow. Dry mouth. Hmmm. Not something that you’d think would be a serious problem, would you? Take a small drink and then things are back on track, right? Wrong. The radiation therapy burned out a substantial number of my saliva glands. During the surgical intervention, the team did move a couple of the glands to protect them from the radiation. But the number ‘transplanted’ haven’t been enough, to date. I can’t eat ‘solid’ foods without having water (or a drink) at hand. Coffee kills the saliva. Any citrus based drink kills the saliva’s lubricating properties. Even a lovely organic apple juice that we found turns off the production of saliva and dries up my mouth. We stick to water and milk at meals. My preference, then, is to stick to stews and soups, or really ‘wet’ stuff. Salmon is in, pork and chicken is out. I’m afraid to try a steak in case I can’t handle it and that will definitely upset me. Eating takes forever ’cause of the combined dryness and the misbehaving tongue. I hate eating. Really. Its just no fun at all.
- My inability to gain weight. Well, if you don’t eat, you can’t gain weight, right? And I really don’t have the personal discipline to force myself to eat… This is especially troubling. I just don’t know what to do!!! I only weigh 159 lbs… down from a starting point of 208 on the day of my surgery. I need another 20 lbs to feel (and be) healthy. I need to build muscle tone. Of all of the QOL issues, this one scares me.
- The odd bout with tinnitus. I get about 10 seconds warning, and then a high pitched mechanical whine in my left ear. At least my right ear isn’t affected anymore. I’ve been very lucky this week that it hasn’t happened while in conversation with clients or coworkers.
- The missing frequency range in my hearing. There is an entire frequency range that has been stripped away by the chemo therapy. Will it come back? Maybe, maybe not. I could have sworn that I heard some of it at a very muted level the other night, but I could be wrong. When I did hear the range, the room was dead silent.
- The ‘white noise’ factor in my ability to focus my hearing. I suppose that most of us always have it, but don’t notice it, but I have a constant noise in both ears, a ‘white noise’. There is no true silence. What seems to be worse is that a conversation in a noisy food court, for instance, is very difficult to focus on because the noise is amplified by the ambient noise in the room. I know that I’m not explaining this one well, but imagine being in an engine room trying to carry on a conversation at normal speaking volumes… you can’t quite make out what the other person(s) is saying, but you know that they are speaking ’cause you catch the odd percussive word… I truly hate the loss of hearing acuity.
- The impact of my shoulder and the spinal accessory nerve. Is this going to affect my enjoyment of my not-yet-delivered motorcycle?
- The hair loss from the chemo that doesn’t seem to want to come back. Annoyingly enough, the chemo took out most of the dark hair, leaving me with the gray and white stuff. I hate the texture! And how thin it all looks. The radiation therapy also cut a swath through the back of my head totally destroying the bulk of hair just above the nape of my neck that gave my head a pleasing shape. The hair is coming back in, but oh so slowly… and its a ‘fuzz’. Ugly stuff.
- The burnt-off beard from the radiation therapy that doesn’t seem to want to come back. I can go for an entire week without even thinking about my razor. Now, to be fair, I have noticed that a ‘fuzz’ is starting to assert itself on my upper lip. Okay, so I have high hopes for a mustache… but the goatee that I wanted, desperately, to cover the surgical scar may be a pipe dream.
- My self image as a tired old man. I keep finding this old coot in my mirror, and I don’t recognize him. I really don’t like the way I look. I look old. I look tired. My hair is dreadful. I don’t want to cut it too short or shave it because of my already haggard facial features. My neck is still puffy and misshapen. I am way too thin, and my clothes just sorta hang there, with no ‘style’, no substance. In fact most of my clothes feel heavy. The white shirts that I like to wear simply accentuate the drawn look. My posture, because of the shoulder, makes me look even thinner and smaller than I truly am. My discomfort with my mouth and tongue make me feel like I am constantly churning my jaw, and I am reluctant to speak in the presence of others because of what I hear in my head when I speak.
If only I could gain twenty to twenty-five pounds, I’ll bet ya that it would mean that I had beaten most of these Quality of Life issues. But for now, I hate what I feel about where I am in my recovery… I’ve still got farther to go than I had hoped. Dammit, but I really hate this!!!