Geek Habitat

June 26, 2007 at 02:08 PM EDTThank you for the fascinating, varied, and heartwarming responses. I have some unfortunate news. It appears that my chemotherapy is no longer effective in containing the growth of my cancer. We knew this day would come from the moment I resumed chemotherapy treatment in March; the response for relapsed Stage IV rhabdomyosarcoma is ineludibly temporary. I’m flying to New York on July 5th for scans and most probably some form of investigational treatment (there are no other chemotherapy options left). We’re buying one-way tickets.My mom told me today that I don’t need to go ahead with any more treatment if I don’t want to. I want to. Mainly because life is the most breathtakingly amazing thing I could ever imagine. If I can get more of it, even just a couple more days or weeks or months, I’ll fight pretty hard for that. It’s not that I have a particularly high opinion of human or universal nature. While there is much good in the world, I see plenty of cruelty and abhorrence, but the stunning beauty and mystery of the experience in all its breadth and glory so profoundly surpasses words that I’m just going to shut up and move on to the next paragraph.When Dr. Wexler told me I’d relapsed, so much hope collapsed in that instant that I asked him why bother resuming toxic chemotherapy simply to buy me more time. At my Cranbrook graduation, he looked me in the eye and said, “This is why bother.” Dr. Wexler, this is the part where I admit that I was wrong and you were right.I will fight to the bitter end. However, we must stop struggling. It is all but a certainty that I will never be cured of rhabdomyosarcoma. It is possible that I will die within weeks, and very probably within the coming months. Please don’t tell me about someone you know who defied the odds; I’m aware people have. I hope to. But I’m not counting on it.Keep fighting; stop struggling. Because as long as we are feeling at least physically and mentally decent, we will never want to leave. There will always be things we’ll wish we could do or could have done differently. One day, written on the calendar in invisible ink, you will die. When that future date becomes today, I guarantee you’ll wonder how the hell that happened. But once you accept it as part of the territory, it doesn’t sting quite as bad.

I feel relatively ready. I’m proud of myself, proud of my life, and most proud of the story of my life. I say the story because it includes everybody in it and all the goodness the has transpired, the courage displayed by my family, the generosity of people like Bob Woodruff to have reached into my life—a busy and important man finding the time to call me from Syria during my chemo week. I am proud of the people my friends have become. They’ve grown so tall. I am most proud of myself (to answer the question) for my seeming ability to bring out the best in those around me wherever I may go. What I’ve done, I believe, is what I’ve been sent here to do.

Something has shifted. Everything is okay now. It’s okay because I am okay with it. The goodness that my having and dying from cancer creates in the lives of so many thousands of people overshadows and outweighs any personal bad. I’m in escalating pain from the tumors but I hardly mind. You know why?

This is my story and it’s not meant to be told any other way.

All good things must end. When they do, sadness is unavoidable. This is one of the core reasons why Buddhists believe life is suffering. Take a romantic relationship, for example. While it can bring temporary happiness, the end is inevitable and so is the suffering. So monks are celibate. They’re totally right too. Love hurts. But there’s a “but,” and it is this: it’s worth it.

Whatever it is, it’s going to end, and when it does, if you can say, “I enjoyed that,” that’s as much as you can be given (the sorrow comes standard), so let that be enough.

Every rose has thorns. —