It's been 10 years since I was diagnosed with Head and Neck Squamous Cell Carcinoma... cancer. I started this blog to share the many emotions, fears, experiences and, hopefully, triumphs that I will face throughout this journey. I have two goals for this blog, 1. To gain some degree of personal therapeutic benefit and, 2. To help others who may one day face a similar struggle by detailing the process of diagnosis, treatment and recovery so that they may know what to expect.

Monday, November 27, 2006

8 (?) Weeks Post Treatment

November 27, 2006 - Again, sorry for the delay in posting. Can it really be almost 8 weeks since my treatments ended? The weeks are really starting to fly by now with the holidays upon us and all. To be honest, there really isn't a whole lot to update right now. I'm still in the holding pattern of waiting for my first PET scans to determine if the treatments were successful.

One thing that is noteworthy I guess is that I am now back to a strictly solid foods diet. The Ensure and Boost shakes have been gone for about a week. I am able to eat an increasingly wider variety of foods as long as they are not too dry although the taste of most things is still very muted and bland. Foods no longer taste "bad" though so I can deal. Thanksgiving dinner was not what I remembered it to be which I can't help but be a little disappointed about but on the other hand, I had no problems with any of it (lots of gravy helps!) so I guess that is worth giving thanks. Maybe by Christmas I'll be able to enjoy it more. Dessert and sweets in general, however, are still an issue although this is probably a blessing in disguise.

Other than getting ready for the holidays and watching a promising young Terps basketball season, I've been trying to keep my mind off of the ominous message from my doctors about the spot that can still be felt on the base of my tongue. I'm really trying to stay positive but the waiting and wondering gives plenty of opportunity for one's imagination to run wild. We took my son to see a movie over the weekend and one of the previews was for a movie that isn't due to hit theaters until November of next year. That's one full year from now and it occurred to me that I may be watching the preview of a movie that I won't even be around to see. Talk about surrealism, folks.

Tuesday, November 14, 2006

Six Weeks Post Treatment

November 14, 2006 - Sorry it's been a couple of weeks since my last post. In all honesty, there was not much to write about last week. Plus, I was out of town for a wedding which forced me to really start eating like a normal person again.

So, first, the good news. My taste is really starting to come back. Things still taste somewhat muted but for the most part, foods are at worst palateable and at best pretty normal. I can't eat anything too dry like breads, crackers, chips, nuts, etc..., because it ends up feeling like I have sand in my mouth due to the lack of saliva which is still an issue but anything relatively moist is ok. Something interesting is that some foods have tastes that I would normally associate with other foods like chicken might be tart like a lemon or tangy like a pasta sauce. It's as though my tastebuds are trying to reprogram themselves. What I still lack is the ability to taste sweet but even that seems to be getting closer.

Now, the bad news or potential bad news I should say. I had follow up appts. with both Califano and Tonnesson over the past two weeks. Both of them felt a small bump on the back of my tongue at the original tumor site which, interestingly, they both referred to as a "nubbin." I too was able to feel it by sticking a finger down my throat. Going through this forces one to get over one's gag reflex pretty quickly. Now, neither Dr. expressed any great concern over this and it is true that scar tissue is not uncommon. Tonnessen actually said that in his opinion, I am cured given the way I seem to have bounced back so quickly from the radiation treatments. What concerns me is the fact that both of them had told me at different points during my treatment that the original tumor had shrunk and eventually dissappeared. In other words, both had stated that they could no longer feel it. So if they can feel something now, what does that mean? If it had always been there, I wouldn't be concerned. It's the absence and subsequent return of this "nubbin" that has me worried. Tonnessen agreed to call Califano to consult with him on it and he called me the next day to say that while they still don't believe it's anything meaningful, it is something to watch so he ordered a PET scan for me earlier than he would normally. I go for that on Dec. 6th. Hopefully the PET will rule out what I fear may be either a return of the disease or, more likely, evidence that the treatments didn't work to begin with. If it is malignant, I'm really not sure what my options would be at that point.

Other than that, I'm feeling fine. I started back to work full time as of today.

Thursday, November 02, 2006

4 Weeks Post Treatment

November 2, 2006 - Today I'm four weeks out from the end of treatment. Life is starting to get back to normal. I thought that I would really be focusing on the fact that I'm no longer doing anything to actively fight this disease but that hasn't really been the case. Part of me feels like this is now behind me. Do I now refer to myself as having had cancer? Am I a cancer survivor? Seems a bit premature for that but I'm no longer a cancer patient and I'd like to think that I no longer have the disease so I guess I'm in a sort of limbo. I'm sure things will be much clearer in about 7 weeks when I have my first follow up PET scan.

It occured to me this week that it's only been 4 months since my initial diagnosis. 4 months! I can hardly believe how much has transpired during that short amount of time. How much has changed. If I survive this, I owe it to the timeliness and sense of urgency expressed by all of my doctors. Of course, I'd like to think that my proactiveness and insistence had something to do with it as well. I read stories from people who spend 4 months just waiting for their treatment to start once they've been diagnosed! Please, if you find yourself in this unfortunate situation, do not be a passive participant. If your doctors are not working on your timetable, find other doctors! This is your life and as far as I'm concerned, that is worth suspending the notion that doctors are all-knowing and that whatever they say must be accepted as gospel. You need to call the shots in terms of when, how and by whom you are treated. Of course, that requires a tremendous amount of research on the particulars of your disease as well as treatment options and facilities.

As for me, I'm feeling much better physically. Taste is still very much an issue but I think I detect the early stages of its return. I have begun to supplement my supplements with actual food. Green beans, corn, plain pasta... generally things that are very moist are OK and have some normalcy in terms of flavor. Certain fruit juices now have a tartness to them that they didn't before and the first couple of sips are even slightly sweet. I just hope that by Thanksgiving, I'll be able to eat a relatively normal meal.

The best news of the week? The Terps beat Florida State and are bowl eligible! WOO HOO! Hopefully I'll be spending New Years Eve at a football game this year!