It has been a few days since I've had something to say, so I guess an update is in order. I've had several great visits over the last few days. David Gregg, a Ph.D. candidate here at UC Divinity school, ordained minister and a great guy who could turn a parking ticket into an existential experience spent a few hours with me. Carolyn Potts spent some time as well and then colleagues (Susan and Rhonda) from my office slotted in a visit between meetings. I've had a lot of tests in the last few days, as yesterday was Benchmark II Day, where they tell how your proceeding along the projected arc of your disease path. Evidently, I'm right on schedule- a unique state of being for me as those of you who really know me understand.
What I've been thinking about over the last few days is the disconnect between the reality of my disease and the day to day of it. While reality says that this is a uniquely desperate situation (my leukemia/lymphoma) is exceedingly rare and not much is understood about the best way to treat it, I feel and look fine after the initial chemo courses. The chemistry attacked the disease and it responded with appropriate surrender. The disease's expression, a substantial body rash, recedes daily, until as of now it looks more like poison ivy than a deadly condition. And it's this juxtaposition that the conundrum firmly rests. If you don't look sick, if you don't feel sick, if you don't act sick- are you sick? In my case the answer is yes- I am. However, in most cases the answer would be - if it aint broke don't fix it. So, the gap between how I feel and what's real is something that I need to address each day. Partly, I can't let myself feel guilty for not feeling bad after alerting 1/2 the free world that I'm in real danger. Secondly, I need to keep focused on the narrow boundaries of personal movement that daily hospital living require- washing of hands, wearing masks outside my room, not shaking hands or hugging guests, understanding that feeling or looking ill doesn't equal ill. In short, respect is called for and diligence is required.
I believe that the reality is that the word cancer is loaded. It is the one thing we never want to hear our Dr say. Even benign skin cancer is a brief scare. Then all of a sudden you actually have it and the very thought of chemo and long hospital stays and IV's and chest tubes conger images of pitch white gasping near corpses being tended to by compassionate around the clock care and lots of hand-ringing family and friends. The reality of course is very different and like most things in life nothing is ever what it seems at first glance. My reality is that I will be engaged with this for the next year or so, that it has already changed and will continue to change my life and will require continuous adjustments along the way. But mostly I have to remember that I need to dream big and be grateful for the small, because this is every day and like Churchill said, "its action this day that's going to count most."