Latest Lab Test Results

Ms. Kubrak from the Cross Cancer Institute called late this morning to update me on the results from the lab tests that I had done last week;
The protein marker that indicates inflammation from the treatments is back down to normal levels.
The white blood cell count is back down to normal levels.
The iron in my blood is low; needs to be boosted before we slip into anemia. I'll need to take some iron supplements. Hmmm... I was. I'm not sure when I stopped doing it as part of my morning regimen.

But generally, things are good!

Self Image Boost...

Last night there was a going away party for one of Gail's employees... a simple affair done in the backroom of the local Sorrentino's...

I decided to chance it, and showed up, late. (Avoiding the speeches?) I was welcomed warmly by a lot of folk who, for the most part, seemed genuinely pleased to see me. And they all seemed to be demanding hugs...

A lot of them thought that I looked really good! It might be a standard response...maybe its what they assume that I need to hear? Doesn't really matter, however, 'cause it did make me feel better about myself... and the lack of beard, and the swollen neck, and the odd posture.

And then this morning I had coffee with Betty (buddy from the Enbridge days) and she mentioned that I looked far better than she had been expecting, and particularly liked the beardless look. A touch of the anorexic maybe, but looking good.

What a boost!

I'm afraid that I swaggered a bit on the way back to the office...

Mid-term Review

Yesterday we went to the Cross Cancer Institute to meet with Dr. Jha for what I am calling a mid-term review... basically to let the gentleman have a look at how I'm doing and to make suggestions (pronouncements) about what comes next.

The visit with Dr. Jha was a bit anti-climatic. Sure, he poked and prodded, and looked in my mouth, stuck a scope up my nose and down my throat... but he really didn't say much other than it all looks good. He quizzed me a bit about functionality of tongue and swallow, weight gain (or lack thereof) but it just felt 'blah'... he seemed really blaise about my early morning vomiting, which we've attributed to phlegm build up on the soft palate owing to allergies, and didn't offer any strategy for dealing with it. Delores, his triage nurse was more helpful. At the end of the meeting, he told me that he was handing me off to the surgeon, Dr. Williams, 'cause there wasn't much point in two specialists keeping me on their roster, and he did see/consult with Dr. Williams on a daily basis.

Okay... I'm a bit puzzled. I know that I'm in good shape, relatively, but I still expected a bit more from him...

The other person we saw was Cathy Kubrak, a research nurse who is working on a study of head and neck cancer patients and their QOL (quality of life) when it comes to saliva production and food ingestion. A really nice person, and she seems genuinely interested in the outcomes...

What she is discovering is that the weight loss curve seems to be consistent to most of the patients she is surveying... so I take heart that this isn't just my issue. They don't yet have a solution to the problem, but they are talking about a number of strategies, including 'tubing' all head and neck cancer patients. I took issue with this approach (and discovered that she is NOT onside with it, either). For me, putting in the abdominal tube would have been tantamount to declaring failure, and my emotional state would have suffered dramatically. My cancer is not the same as MS or one of the other diseases where the introduction of the J-tube gives the patient a sense of hope. For me, it would have meant that the recovery was not going well... that I was in serious trouble. Hope would flee...

I told Cathy that our GP, Dr. Naiker, has prescribed an appetite stimulant (gotta remember to fill that prescription one of these days). I got the impression that that was one of Cathy's preferred approaches.

The problem with an appetite stimulant is that I still haven't found an intake regime that makes sense... the celiac issues complicate things dramatically. I'm not able to just load up on noodle soups... I do need to find something that works, that is easy, otherwise I'll just continue to do 'maintenance' feeding and not begin the 'bulking up' that I really need.

Its been a good week...

I've had a really good week! I haven't gained any weight, but I haven't lost anymore, either. My mustache is really growing... really! I felt both challenged and satisfied at work this week.

And I took delivery of my motorcycle last night. Damn, but its heavy! It actually scared me a bit. I will spend some quality time with it this weekend driving around the local industrial park, trying to get used to it, and its weight. But after a few minutes of trepidation on the drive home, which started with it running out of gas within 200 metres of the dealership (boy, were they embarrassed, especially after I had quizzed them about how much gas was in the tank before I drove away!), I actually began to enjoy the ride. I still need practice before I try a downtown rush hour.

Exciting stuff!

Goals... its about reasonable goals...

Now that I've returned to work in what is reputed to be record time, I wonder why some cancer patients do what I've done, and some simply can't...

Okay, staging of the disease does have a lot to do with it. And, location and physical impact of the disease. Ya, and the whole 'support network' thing does, as well. But if you baseline my situation and use it as a measuring stick to find others on the same level, its still very surprising how many people just can't seem to get on with the business of living. (By the way, major kudos to the infrastructure that supports the fight against breast cancer... it promotes an attitude that I've not noticed in the other cancer groups!)

But I'm really starting to think that knowing that the cancer and its treatments are merely a blip on the radar, a moment in time that one will work through one way or another is the key to quick turnaround and survival. One approach to forcing the cancer to become that 'moment in time' is to be totally consumed, emotionally and intellectually, by the disease as you try to fight to ensure it doesn't consume you physically. For me, 'that way madness lies'. (Gee, did I get that quote right? Hamlet, right?) I can't allow the cancer to be the only focus, 'cause then I'd be headed towards a form of intellectual suicide... gotta keep the dreaming going. And to make the dreaming effective, some of the dreams have to come to fruition, so they must become goals.

The goals must be attainable, at some level at least, and within a shortened time frame. There needs to be some level of correlation between the therapies and the achievement of the goals. They need to be adjustable, as well. I set some goals at the beginning of all of this, and then reviewed and revised as I learned more about what my body would stand. For instance, I decided that I would be out of hospital within 10 days from the surgery. I also desperately wanted to go to the Pink Elephant conference in Vegas in February. If we were only coping with the surgical fallout, we would have made it... I just didn't understand enough about the chemo and radiation therapies, their schedule and physical impact when I set that goal. But the thought of 'trying' made some of the transition to wellness that much easier and quicker.

So, I'm back to work well within the parameters of the goal I set for myself. I'm not really comfortable with my physical appearance, but I can't let that keep me housebound. I'm out and about, and being productive! That's the important part...
I passed my motorcycle license; a trade off for the Coastal Navigation course.
I will be picking up my new motorcycle next week; I won't be sailing this summer, and definitely won't be buying a boat.
I will have a full beard by September. Of course, the radiation therapy may have already made that decision for me. I do have the framework of a mustache which gives me hope...
I will gain back 20 pounds by August. This one is about personal discipline... and fighting through the problems with my taste buds and my rebellious tongue.
The airline tickets for our trip to the UK have been purchased.

If you have a target, a short term goal to work towards, dealing with the cancer seems to be easier.

And of the course the long term goal of 'survival'...

QOL=Quality of Life

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!!!