I've been reading now and then at this forum for weeks and decided I should sign in. Maybe my initial reluctance was part of that response of denial. If I don't post on a message board for those with oral cancer, then the fact of it seems less real. Maybe that was a subconscious part of it.

I suppose another part was being a bit in awe of some of the strength of will being shown by some of the folks whose messages I read here. I felt a bit like a guy complaining about dealing with the drill sargeant in Full Metal Jacket while some of you were fighting in the rubble of Stalingrad. When I've felt furious at the way I was treated by my doctors and what I'm going through, I could read your messages and get back some perspective.

I never suffered a moment's pain from my cancer, not for a second and not the merest scintilla of discomfort. I was at the dentist's office last May and the assistant noticed a lump behind my upper left teeth. It looked like a wayward wisdom tooth. My dentist refered me to one doctor who I asked point blank, first question over the phone, "Is your work covered by my ****** insurance?" He said yes. It turned out, somehow, no. There followed two weeks of insane runaround and back and forth all while I'm supposed to casually walk around with the knowledge of possibly having cancer.

Finally, I get directed to a ENT doctor at ******. Fine. I don't really care. I have no idea which doctor is better. As long as my insurance is paying. This doctor sees me, hmms and "ah, yes"'s and sends me for a CAT scan. I wait an extra hour because the woman at the desk checked me in but forget to actually check me in (sort of like the car rental place 'reserving' a car for Jerry Seinfeld). The images come back and my ENT doctor shows me the 3D image of my "very well defined" growth. This doctor told me point blank that rather than just take a biopsy, he would remove it.

Period.

There was no discussion of anything else being a possibility. Not a syllable. I was to find out this was not the case.

The first operation, in July, was, frankly, a piece of cake. One moment I was counting down from 100. The next I was waking up and getting ready to leave. My mouth was a bit stiff for a couple days but that was it. The test results came back and showed the dreaded "positive margins". To my surprise and yes anger, I was informed that the doctor did not just remove it, that other scenarios were possible. As merely the patient I found that I didn't make the need to know cut to be told that.

The second operation in August was, again, a piece of cake. The test results that were supposed to come back in 7 days. 19 days later, no one had contacted me. No one had said a word to me. I happened to be in the doctor's office for an allergy shot when one of the nurses came up to me all cheery at bumping into me. No one apologized to me. Golden Rule? As a mere patient, I guess I was just expected to suck it up and accept 12 more days of uncertainty whether everything was over with or I needed more cancer treatment.

There were, again, positive margins at the edge of the removed material furthest from the inside of my mouth. Thus began a nearly 4 month whirl of doctor visits. I was referred to a doctor in Boston who was supposed to be so good as to be able to remove that remaining material without creating a hole from my mouth through to my sinus cavity. Ater "hello", I think the first words out of his mouth were that he'd have to create a hole from my mouth to my sinus cavity. I saw an oncologist in Boston. I saw an oncologist back here in central MA.

The explicit consensus of all of them was that having the operation to create a hole from my mouth up through to my sinuses to remove any remaining cancer (then wear an "obdurator" to fill that hole then hopefully have a second operation to close it) or having IMRT radiation treatments were equally likely to leave me cured. It was my choice as to which I wanted to have done, which set of negative repercussions I wanted to deal with.

The oncologist here in central MA was the guy with whom I spoke the most. He was much more personable than any of the others and seemed genuinely sympathetic when I bitterly complained of how the ENT guy had misrepresented things to me before the first operation.

Based on what he said, I decided to go with radiation treatments. So, of course, bitterest of all possible ironies, I discovered that the oncologist had misrepresented the nature of my radiation treatment to me. I cannot describe, without the use of expletives, my feelings toward him. To put onself forth as mister sympathy over someone not divulging information to which I was entitled and to then misrepresent things to a much greater degree is still breathtaking to me.

I had 33 sessions of IMRT radiation, eight bursts of radiation each time, starting from behind to the right and working progressively around to behind to the left. My last treatment was February 4th.

I feel like I'm slowly but fairly steadily progressing. I can blow my nose again. Right after treatment was done, the tissue separating my mouth from my sinuses was so weak that I couldn't form any sort of seal.

I'm still somehow very much down on how much mucus I get from my sinuses. My nose is constantly very dry. I'm still very much down on how much ear wax I produce. My sense of taste is improving. Salty tastes came back quickest. Luckily I'm not devoutly jewish or muslim as ham quickly became a go to meal. Sour and sweet tastes have partly come back but taste is still a bit iffy. Hair is still gone from the back of my head and mostly gone from my beard area. The latter doesn't bother me at all. The former bothers me. My mouth is very dry. I can't talkto anyone for more than a minute without needing water. I wake up with roughly the same moisture in my mouth as I would expecte had I been crawling across the Mojave the previous day. I can't eat without water or something in the meal to make things moist. My voice is also deeper but in a raspy way. I was told to expect to get back 70-80% of salivary function but I'm nowhere near that.

I lost something like 12-15 pounds in the course of the IMRT but I wasn't heavy. I ran 7.3 miles the night after my 8th treatment and ran it hard. But when I tried to run after my 10th I could tell that the best I could possibly do was a couple miles less than that. The loss of strength in just those couple days and treaments was absolutely clear. Shortly after that our wonderful new england weather made running outside impossible anyway. But starting right at the end of treatment I got this perplexing puffiness to each side of my mouth and down to my jaw. Between this and the loss of hair at the back of my head I look like shit.

Well, I've used this as therapy for long enough. I'll just finish by saluting the incredible strength of will that so many of you have shown. Your examples are inspiring.