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Posted by Lorin Buck

Still waiting for Godot

Shortly before I graduated from college 32 years ago, I wrote a mildly irreverent paper for a journalism course. I pointedly asked how all the French literature I'd studied could possibly be applicable to my "real" life.

Specifically, I questioned the practicality of studying the works of 20th-century existentialist and absurdist writers (Sartre, Camus, Saint-Exupéry, Ionesco – whose books I loved, by the way). I remember writing something to the effect of, "What use will I have for existentialism years from now, when I'm performing mundane tasks like unpacking the dishwasher?"

Well, now I know because I'm waiting for Godot.

"Waiting for Godot," Samuel Beckett's most famous work, was written in French – "En attendant Godot" – in 1949 and was first performed in the Left Bank Theater of Babylon in Paris in 1953. The play is considered an existentialist piece in the way it views life.

Although my husband Gene and I aren't sitting under a tree, we are sitting under the cloud of an impending tumor diagnosis for our son David. Like Estragon and Vladimir, we're waiting for something – we just aren't sure what it will be. The sun rises, the days pass, night falls, and we feel no closer to an answer.

All we know is that Godot is coming: a Guaranteed Official Diagnosis Of (the) Tumor.

At this point, pathologists at Georgetown and Johns Hopkins hospitals have come up with diagnoses that are inconclusive. While the cells look like those of a rhabdomyosarcoma (malignant), they behave like those of a schwannoma (benign). The best guess is that it's something in between – maybe a myofibroblastic tumor, or maybe a myofibrosarcoma. In any case, the tumor appears to be rare.

But "inconclusive" isn't good enough. We need to know for sure – effective treatment hinges on a precise diagnosis.

Like Estragon and Vladimir, Gene and I are completely focused on Godot's arrival. Even when we're doing other things, thoughts of the tumor never leave our minds. Evenings when I'm unpacking the dishwasher, I wonder how we got here. I wonder what kind of future we're waiting for.

I never realized that waiting is such an integral part of the cancer experience. I know people wait to see if treatment is effective, and I know they wait – usually five years – to find out if they're cancer-free. But I didn't know you sometimes have to wait so long to get a diagnosis.

As a result of this blog, I received an e-mail the other morning from Dave Marsh, trustee of the Kristen Ann Carr Fund in New York City. The fund is named for Dave's daughter, who died of a liposarcoma in 1993. Since Kristen's death, Dave and his wife, Barbara Carr, have raised millions of dollars for sarcoma research. Details of their philanthropy can be found at sarcoma.com.

Dave also happens to be a music journalist; he wrote for Rolling Stone at one time, and for Newsday before that. He's authored more than a dozen books about rockers like Bruce Springsteen and Don Henley. Dave is also a Grammy Award winner.

One of his projects is an as-yet-unpublished book about cancer that he co-wrote with Murray F. Brennan, chief of surgery at Memorial Sloan-Kettering Cancer Center in New York. Dave sent me a copy of his manuscript the other day, calling it "a pretty good starter kit."

In fact, it's a terrific starter kit. And it's more than a starter kit. The book walks patients and families through the entire process of managing cancer in straightforward, matter-of-fact language.

An excerpt about waiting was especially reassuring to Gene and me:

"Patients with a cancer diagnosis feel that time is imperative. Time is important but that means time measured in days or weeks, not minutes or hours. It is far better to have the right thing done first than to have to rescue a problem poorly solved the first time. This is particularly true if you have an unusual or rare cancer. ... Try to distinguish emergencies of the mind – the urgency you feel to get something done – from emergencies of the body. Very few cancers are emergencies of the body."

Those words gave us some needed perspective.

We learned today that Godot is still at least a week off. The pathologists have determined that they need more tissue, which means a second biopsy, possibly as early as Monday.

One thing that Gene, David and I have that Estragon and Vladimir didn't have is company. We aren't waiting alone. We have family, friends and co-workers who are patiently standing by with us. And that makes all the difference.

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