Wednesday, September 19, 2007

Random Thoughts

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."

Arnie

5 comments:

nancy said...

a distinction to offer...
"you" are not sick -- "you" are perfect and whole. Your body, however, is a train wreck. :-))

Julia Tang Peters said...

Arnie, I read your blog with admiration. You are indeed perfect and whole (as Nancy writes), and your body's turbulence sounds very strange indeed. You are unique, but you didn't have to go this far to prove your uniqueness:-) I'm sending a big virtual hug!

Anonymous said...

“dream big and be grateful for the small”- This is a great advice Arnie. Of course its not the first lesson I’ve learned from you. Growing up across the street from you and being the best friend of your son gave me special access to the many things you have to teach. You taught me many straight forward lessons like the fundamentals of throwing a football and the proper placement of pillow barriers when setting up an “American Gladiator” gauntlet in the basement. These were always taught with great patience and an enthusiasm and creativity that made you seem less like my friend’s dad and more like GIANT kid.
I also learned things from you that I will bring with me into my adult life. One very important lesson of home maintenance I was taught was to be careful when manicuring bushes with an electric trimmer. This was taught through self sacrifice. I know, because of you, that it’s OK to fart in front of your son’s friends and also alright to call another guy a “babe” and occasionally pat his butt. I learned the importance of golf in a man’s life and that it’s something worth waking up very early in the morning for, particularly since you can use the afternoon to watch it on TV and nap.
I may have missed some of the more profound expressions and lessons as they flew over my 4’5” head but continue to learn them now as I read your blog and listen to your courage and clarity in the face of adversity. Most of the examples I mentioned above are meant to make you smile but I truly learned a lot from you about being a man. I am thankful for the lessons you taught and for providing me with a father figure and role model at a time in my life when one was greatly needed. So, keep providing advice and example because it does not go unnoticed or unappreciated.

Joe Engel- AGFC Member since ‘81

A. H. Goodwin said...

Joey,

You have to remember that you were an easy kid to love. You were my son's inseparable partner in all things kid and in that you were loyal and trustworthy and gentle, not always easy for older kids to be with younger ones. You were a big part of what made neighborhood life in WRP fun and richly rewarding.

Hope to see you when I get out of here.

Rhonda K. said...

Churchill also said, "If you find yourself in hell, keep going." I had that quote on a refrigerator magnet when I was in the hospital and I think it can inspire you as well.

What you're expressing in this entry is so familiar to me. How can I feel so fine and be so sick? How can I see my disease fading away but still have so far to go? Maybe this is called the cancer irony. You use poison to make you feel better, but when you feel better, you're not REALLY better. But in a better place to get better. (Man, I need a drink!)

But really, embrace these good days and the healing your body is going. I guess in the end, the fact that it's working is all that matters.

And when you do finally get out of that room, squeeze the hell out of life, because despite the cancer and the chemo and the masks and the medicine, I promise life will be all the more beautiful.

xo,
Rhonda