A year later...

June 28, 2007 - Exactly one year ago today I was diagnosed with head and neck cancer. Just like that day last year, today was very hot and rainy.



It's really very difficult to describe how reaching this milestone, to the extent that this is a milestone, feels so I won't bother trying. I will say that there were countless times when I honestly doubted I would see this day. And yet, here I am. Typing away.



You may wonder why it's been 5 months since my last post. Well, I guess that is a testament to the fact that there truly is life after cancer. I've been living my life. Mundane and stressful as it ever was before this began but with a new appreciation for, yes, even the mundane and stress.



That's not to say that cancer isn't still ever present. It is. I think about it, almost constantly and it's been so long now, it has almost become second nature. One does grow weary, however, of that constant feeling of impending doom. Like one day I'm going to wake up and it's just going to be back. Just like that. As though it had only been hiding all this time but never truly left. It's like walking around all day feeling like there is a large, heavy blade directly over my head and its being suspended by the thinnest of threads. One misstep like eating the wrong food or drinking a beer or not exercising enough or exercising too much... one misstep and that blade comes crashing down right on top of me. Such is the life of a cancer survivor but it's better than the alternative, I suppose.



BTW, please don't refer to me as being "in remission." I hate that word "remission." To me it means you've still got cancer, it's just taking a break. One either has cancer or doesn't. I like to believe that at this point, I do not have cancer.



Having said that, of course, there have been plenty of opportunities for my paranoia to run rampant. So since my updates in January, I have been back in for checkups with both Califano and Tonnesen. All seems well. I had a PET scan on May 5th that came back clean. However, stupid me coerced the technician who took the films to tell me if he saw anything. He's not a Dr., mind you, but I figured he could at least see if something lit up. He told me he thought he saw something and I proceeded to panic for the next 48 hours until Tonnesen was kind enough to call me with the actual results. Most recently, I've noticed two small lumps in the right side of my neck, down near my collarbone. The reader can imagine that I'm pretty thorough in checking my neck for anything out of the ordinary every single day. So one day there's nothing there and the next (Father's Day to be precise) there they are. This was on a Sunday and the following Thursday, I was back in to see Tonnesen after having seen Califano two weeks prior. Tonnesen says he can feel them but they don't make his fingers 'tingle' which, for the most part, is good enough for me. I asked if they were something, would they have shown up on the PET from 6 weeks ago and he said that they were so small, they probably wouldn't show up on a PET now. As a point of reference, both nodules are about the size of a pinto bean, give or take. Tonnesen chalks them up to the normal "lumpiness" that we all have. Don't think I won't be keeping an eye on them though....



In another development, I have been chosen to participate in a clinical trial at Hopkins for a drug that may help my body's natural defenses recognize and fight the particular type of cancer I've had. I'm not sure if I mentioned this before but my cancer was viral in nature which seems to be more and more common these days for young people with head and neck cancer who are non-drinkers / non-smokers. Apparently there is enough of a correlation that the medical community is willing to finally step up and say that there is, in fact, a causal relationship. This research is actually being spearheaded at Hopkins by Califano, among others, so I feel very fortunate that I found him. Anyway, I will be one of 6 people taking the highest dose of this drug that they will administer. So far, they have had 3 test groups of 4 people each, each subsequent group receiving a increased dosage. From what I'm told by Dr. Gillison (the head of the trial) the results to date have been very, very promising. I really like Dr. Gillison, despite the fact that she's a dookie! (Duke University alum for those of you who don't follow the petty rivalries among college athletics). Anyway, I head up to Hopkins next week for the first step in the trial. I'll report on it afterwards.



One final quick note. The company that built the radiation machine I was on, Tomotherapy, gave me a call out of the blue a few months ago. Seems their crack marketing dept. does a good job of keeping on top of the "word on the street" and happened across this blog. They asked to do a profile of me for the Patient Profile section of their website. I wasn't quite sure what to make of it but sure enough, after a couple of phone interviews, they came all the way from Madison, WI with a photographer to take pics of me and family. You can read the profile HERE. It was a good experience and the folks from Tomotherapy couldn't be nicer. They still stay in touch! Not to sound like I'm shamelessly plugging them but I am 100% convinced that my treatment and recovery wouldn't have gone nearly as well had I chosen a different radiation option.



I guess that's all for now. For all of the people that have stayed in touch, thanks and hang in there....