Tuesday, July 5, 2011

Whatever Life We Get is Bonus

Looking through my living room window, I suspect being outside would feel wonderful, but I really wouldn't know. As I write this from my bed, my entire body feels saturated in a sticky, toxic nausea, with chemotherapy pumping through my 18-year-old veins. Like Michael Jackson's moonwalk, chemotherapy has this strange way of moving a person another step towards life and death at the same time.

Twenty three months ago, I was diagnosed with stage IV rhabdomyosarcoma, a rare pediatric muscle cancer affecting only 350 children a year. With odds like that, and with a 20 percent chance of survival, I can only deduce two possibilities about the universe: God's plan is evident in every little shifting of the breeze, or it's totally random. I don't see how there could be much middle ground.

I remember my first chemo round, staring at the ceiling and trying not to cry. The agony was stunning. I've long since learned to go ahead and cry. How could this have happened? Yet as with anything that happens, it happens, and then suddenly you find it has happened, and more things keep continuing to happen. Chemotherapy has instilled in me a visceral understanding that all bad things will pass in time ... but that all good things will too.

I set out on a 19-month course of treatment, chronicling the journey on an online blog. Little did I know that my little Web site intended to keep extended family and friends informed would find readers all across the country and even the world, including such countries as Japan, Australia, Germany, Brazil.

My journey became our journey, with treatment finishing last December. For a brief, hopeful month in January, it appeared to have been successful. My scans were clear. But, as is so common with cancer, there were still sub-detectable rogue cells lurking in distant corners of my body. Within weeks, they swarmed forth again and my body was infested once more.

A recurrence of my kind of cancer has been hitherto incurable, although I still cling to a slim ray of hope. But in all likelihood, I am in the last few months of my short life.

Unlike many cancer patients, I don't have much anger. The way I see it, we're not entitled to one breath of air. We did nothing to earn it, so whatever we get is bonus. I might be more than a little disappointed with the hand I've been dealt, but this is what it is. Thinking about what it could be is pointless. It ought to be different, that's for sure, but it ain't. A moment spent moping is a moment wasted.

I accept what is to come, but I cannot rid myself of a deep mourning for all those experiences -- college, marriage, children, grandchildren -- that will probably never be mine to celebrate. What solace I do find is in the knowledge that I have done everything I can to transmute this terribleness into something positive by showing as many people as I can how to endure it with a smile.

I don't believe you can ask for any more, but if I could ask for something, it would be to be able to go outside into the glorious spring air, feeling healthy and blissfully clueless as to how lucky I was for it, if only just for an hour.

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