What's a Day Worth?

Yesterday sucked. Oh, it was a beautiful day and there were definitely highlights, but for me it sucked. I've tapped into a network of people that are in the process of surviving what I have. As I talk to them I'm getting a much clearer picture of what I'm in for and more importantly, what my family and friends are in for. This disease is so rare and yet there are two of us in Hood River and a third just passed away. What are the odds?

The doctor in DC recommends that someone, family or friend, be with the patient at all times. As I read through accounts of what the month in the hospital will be like I began to worry for Sharon. My part is easy, I really just lay there and have them do things to me. But for someone who loves you, this seems like an almost impossible load to bear.

Is it worth it? The cost is horrendous. Even if my insurance company pays 90%, which I expect, there are so many other costs, physical, mental and psychic. What really is an extra day of life worth? How do you place a value on that? I know my friends and family love me and I love them, but are there limits to what I should ask them to endure just so I can have more time? It seems so incredibly selfish.

And yet, I want to live. I feel obligated to do everything I can to live longer, but the doubt just keeps nagging at me and I start to understand just how small, unknowing and fragile I really am and how little control I really have over anything. It would be easier to concentrate on having a good death, but when I think about that I feel like a coward. Like my friend David Lindsay back in Texas used to say, "It's just gonna be fucked". This my friends, is fucked.

Today we're off to Texas and I profoundly hope that it will be a better day.