secaucus is not our destination

Dear Friends,

Rich is now resting from our trip to New York City. I had the first sleep shift, just awaking from a two-hour nap.

This is what happened yesterday.

Weeping rain, all morning. Sometimes, very heavy. We board a morning train from Salisbury Mills to Penn Station, a 1 hour 20 minute trip. We watch the rain, hold hands, talk. We wish we had done more of this.

We call a friend, and take the subway to meet her uptown. A wonderful lunch that became our dinner, too. Plates of pasta and glasses of wine and, mostly, hope.

Two buses later, crosstown and downtown, the rain stopped, amazingly cool New York weather blowing in. We arrive at the Laurence Rockefeller Pavilion, the midtown satellite of Memorial Sloan Kettering. A lobby of the a $600-a-night hotel couldn't be finer. The concierge, wearing tie and a smile --- no pink-coated volunteer here --- greets us. Fifth floor, we're told.

We wait. Rich is weighed, measured, his temperature taken.

We wait.

We are escorted into the inner sanctum where the doctor whom we have never met will, we hope, offer us a bag of the experimental pills that will knock back Rich's growth.

We wait.

A young woman, friendly and enthusiastic, enters. She wants to tape the conversation Rich will have with the Fellow, the doctor's assistant. Okay, he says. He signs a form. He offers an office at Cornell that can help with her project. She is brimming gratitude.

We wait.

The Fellow arrives. About twenty minutes of questions Rich has answered countless times before. He is examined. How many fingers do you see? Are you in pain when I touch your back, neck, armpits, groin?

We wait.

Two hours after arriving, the doctor walks in. With a wad of forms, but no pills. Sign these, he says. You can read them later. Rich agrees to cooperate with this experiment, to keep a daily log, and to return to New York in a week to pick up the pills.

What? we both say.

Okay, okay, maybe we can work something out, the doctor agrees. You need blood tests before we begin. An EKG, too. Sutent can cause heart failure. Why didn't you tell me this before, Rich says. I could have done these test back home. Now we're losing time.

I hope this helps with your symptoms, the doctor says.

I don't want help with "symptoms," Rich says. I want help so I'm not paralyzed. I want help so I don't die.

Forever a scientist, Rich asks questions that can't be answered. He's a guinea pig --- actually, a ferret, they apparently are the only other animals that support chordomas --- and we leave with scrips for tests and daily logs and reminders to return every two weeks.

Everyone, even the doctor for whom Rich is the ferret, is nice.

But while nice is nice, I don't care about nice. I care about Rich dying.

We take the subway back to Penn Station. It's late. We ate, we realize, days ago. Because of his current meds, he gets shaky when he doesn't eat. We get sandwiches at Penn Station.

We wait.

The train comes. We change at Secaucus, the timetable says. But this is the first stop, and on the crowded train the conductor doesn't collect our tickets before we disembark.

We could have gone to Secaucus for free, I say.

No, Rich says. He grew up in the next town. He knows. Secaucus, he says, is no one's destination.

When we get on the train for the long part of the trip, the conductor takes our ticket. For the long trip, everyone pays.

Candace