One Week

August 21, 2006 - One week down and all in all, I'm no worse for wear. It's late, I'm tired so here are a bunch of random thoughts:

• The stomach issues are still intermittent but all in all, it's not that bad. Yet. This past Saturday was essentially a waste as I just laid around feeling 'blah' watching the Little League World Series and wondering how a 6'8" 250 pound 13 year old can rightly be considered a "Little" leaguer. At times I feel fine and at other times I just feel overly full like whatever I do eat just kind of sits there. Ginger ale helps some. Exercise seems to help too. I'm still doing 25 minutes of cardio each day as well as some light weights to try to maintain muscle mass.
• Since I have to figure out a way to choke down 2500+ calories and 130 grams of protein each day, the whole foods diet is pretty much out, at least for the time being. There is just no way I can stomach that many fruits and vegetables. Between bouts of stomach upset, I've managed to indulge a few cravings which seem to be mostly richer, spicier foods.
• At least I know the Erbitux is working. As of today, the acne rash is in full force. I'm amazed at how quickly and completely it has manifested itself. You can see the progression, literally, from hour to hour. I'll try to post a picture tomorrow but believe me when I tell you most tenth graders have a better complexion than I do right now. Hopefully, the drug is having a like effect on the cancer cells.
• 5 radiation treatments in the books and still no noticeable effects internally or externally. I know it's just a matter of time but I'm hoping that by choosing Tomotherapy, I've spared myself at least some of the horror that I've read about during and after treatments. Time will tell. From what I hear and read, week three is when it really starts to kick in. On an interesting side note, there has been one positive side effect from the radiation which is the scar of my primary incision is much less noticeable and almost completely flat.
• Lingering effects from surgery - I'm still numb on the left side of my neck and around my left ear and ear lobe. The left half of my bottom lip still appears to be paralyzed and I'm beginning to wonder if it will ever get better. On a brighter note, the residual pain in my chest has all but completely disappeared and the range of motion in my neck is probably back to about 95%. The elasticity of the skin in the region is almost completely back to normal.
• I'm really wondering if I made the right choice with Erbitux. Did I just take the easy way out because the effects of Cisplatin are so much harder? I've only got one shot at this so I need to throw everything at it including the kitchen sink. What if I'm not being aggressive enough?
• I found a new site today called the Oral Cancer Foundation. For anyone in this unfortunate predicament, I recommend this site but do so with a word of caution. Yes, there is a wealth of valuable insight and information from people who have experienced this disease but it is also a stark reminder that very many people do, in fact, ultimately succumb to it. I guess I was hoping to see more stories of survivorship, 5, 10, 15 years out but unfortunately those stories are rare on this site. Most of the members are 1-3 years post treatment and that's a great start but it is also tempered with many people who are recurrent, even beyond that timeframe. Plus, it seemed to me that most of the people who cared to post their success stories were not as advanced as I am. I found myself a little depressed and even a little angry after reading through many of the posts but I will continue to visit this site because if nothing else, at least I'll have a better idea as to what I should expect in the coming weeks.
• I'm really, REALLY afraid that I'm not going to be here for Mason as he grows up. Understand, I am not afraid to die as long as I can feel confident in knowing that my boy is old enough to understand, accept it and persevere. If someone told me that I had exactly 20 years to live from this moment but not a second more, I would take it in a heartbeat and not think twice about it.

Thats about all I have for now. I'm going to bed.