deep in the ocean, there lies a wave for you

This trial was closed when Clark was turned away from NIH, but I have all the information about it written down in my notebook. Actually, “Bristol-Myers Squibb” is written in the doctor’s handwriting. I made a bunch of calls about it, but everything was full.

“The last drug approved was interleukin-2 in 1998, but it is so toxic it is rarely used. Neither it nor the other approved drug, dacarbazine, has clearly demonstrated improved survival.”

We wanted to buy him some time by shrinking his tumors so that he’d be able to receive a treatment at NIH that had a high percentage of curing him for good. But some people receiving the Yervoy aren’t expecting to live long lives; they just want a few more months than an advanced melanoma diagnosis would allow them.

“That price could spur continued debate about the cost of cancer drugs that prolong survival by only a few months on average.”

We never thought like that – in terms of squeezing out a little more life. The thought never entered my brain. We were either going to beat it, or we weren’t.

My birthday is next Thursday. Last year I was so terrified to face this day where I am the focus of celebration. How can you rejoice in someone so sad? My wonderful friends made it very special, and I took away from it what I needed to – that I have a lot of people who love me.

A year later, I am still down, though I feel differently. This day is so loaded. Two years ago, my actual birthday was spent in the hospital. We got news that Clark would, in a few weeks, receive the treatment we hoped would save his life. A few days later, he used crutches to slowly hobble the half-mile between our apartment and the bar where my party was being held. I slipped him a painkiller every 20 minutes, going over the recommended dosage. While talking about it today, I realized that this was the last time we pretended, to ourselves and to our friends, that everything was going to work out. We spent the next week or so arguing with the doctors, begging them to move up the dates of the treatment before he got too sick to handle it. He got too sick to handle it. We told our story to a room full of doctors gathered around a U-shaped table. They voted that it was too risky. We begged our own doctor later – but if he gets chemo, there is only a 5 percent chance of it working. With those odds, isn’t it worth, then, the 50 percent chance that he’d die from the treatment? They didn’t think so.

So this is strange – obviously, I follow Norm MacDonald on Twitter because a) I am a weirdo and b) he is hilarious. And he put this up today:

In therapy today, my lady asked me about expectations. I thought about it and realized I don’t have any, and that made me cry really, really hard.