deep in the ocean, there lies a wave for you

Clues in this week’s Ink Well that are relevant to my life:

ACROSS:

25. Respectful greeting to a yogi

68. Britney of breakdowns and reinventions

DOWN

1. Ira Glass’ show, for short

26. Sch. where ‘Good Will Hunting’ is set

When Clark was sick there was never any melanoma news. Today there’s a big announcement.

The F.D.A. approved vemurafenib, with the brand name Zelboraf, to treat patients with metastatic melanoma who have a certain genetic mutation called BRAF V600E.

(Clark had that mutation)

“This has been an important year for patients with late-stage melanoma,” Dr. Richard Pazdur, director of the F.D.A. Office of Oncology Drug Products, said in a press release on Wednesday.

But many patients become resistant, he added, and the drug prolongs lives only months on average, pointing to the need for further research.

I guess … this makes me think about people who get their melanoma diagnosis and never really think they’re going to beat it, like we did. It was naive, sure, but I can’t imagine how differently we would’ve acted if the end goal wasn’t survival beyond a few more months.

I like my new job. The people are nice, I am busy and the workday goes by quickly. A piece I wrote, “Chat History,” is in the fall issue of GOOD Magazine, which is available for purchase at select WHOLE FOODS MARKET STORES. It will be live on the Internet on August 29. I like this boy. There are so many good music and podcast and nerdy items happening filling up my iPod. My little brother came to visit with his girlfriend last weekend and we had the best time, full of tender real talks. If I give his girlfriend a book from my formative years to read, she reads it in like three days and then reports back to me (#socialexperiment).

It’s not surprising that all of this is fucking terrifying. But like I said to Cella the other day – if there can be a time in life when nearly every single thing that happens is bad, can’t there also be a time when the opposite is true? Deep breath and … yes.

Today was my last day at Dischord.

When I started there, I was a lost, unemployed puppy. I can’t remember how I filled all of the hours in a day when I had no job. There was lots of Hulu and Netflix and lots of Sticky Fingers and yoga and crying about the loss of two major parts of my identity: my job and Clark.

When I took over the mail order department, I was elated. I communicated daily with people who love the label as much as I do. They were always so excited to have a person on the other end of the phone or email to provide a deeper connection to the music they love so much, and that person was me. They wanted to state their preferences and they wanted to hear mine and I was happy to tell them (The Argument, The Unanimous Hour, 1986, In Mass Mind).

Most importantly, I could be a zombie one day and cry my eyes out the next day and they all understood why. I didn’t have to explain anything to them; they had all witnessed it in some way. On the first anniversary of Clark’s death, I came into work and told Alec about it. He said, “I’ve got a little story for your day.” Clark and the Motorcycle Wars had borrowed Alec’s band’s van ten years or so before, and when they returned it to him, there were pictures of genitalia hidden in EVERYWHERE – under the seats, etc. I loved that story, and he had known that I would.

Over the months, parts of my brain came out of hibernation. I began to try to figure out my post-Clark identity. What am I good at? What do I want to be doing? The tasks at Dischord weren’t occupying my mind anymore. I needed to use the skills I’d worked so hard to develop pre-caretaker.

Monday, I’ll be a journalist again. I’ll make enough money to not have to work a second job as much as I do now. I’ll be able to devote more time to writing my book.

I cried very hard hugging Ian goodbye. I know I’ll see him very soon, probably within the next week or so. “You are so loved by so many people,” he said to me today. Dischord is a house of love, and I have left, and that merited a good pile of tears.

An older couple came to get a refund for an event that’s been canceled. I don’t know why, but the refund doesn’t include the service fee. Sometimes people ask about it after counting the cash I hand them, and when I apologize, they accept it. I’m clearly not personally holding their dollar hostage.

These people didn’t like it so much. OK. So you originally paid $2 more than you’re getting back; I understand. “Well, can we complain?” they asked me. Sure, I said. Here’s my boss’s email address. I wrote it down on a Post-It and passed it to them.

The woman’s gaze settled on my face. “Smile, dear,” she said. “Life’s too short.”

It was like she wrapped her hands around my throat and squeezed.

My start date is 8/8/11.

Today is the two-year anniversary of the day Clark died. Last night I had a cry thinking about how routine it was for me to crawl into his hospice bed every night, squish myself next to him and pull up the bars on the side to secure my place. At the time I didn’t conceive of how heartbreaking it was because I didn’t think outside of the single moment I lived in. I remember what it was like to feel his body so close to mine, to listen to him breathing, to feel my worry taper off when a new breath followed the one before it, to eventually fall asleep with my left arm draped across his distended belly. He is more gone now than he ever has been. I miss him so much.

I saw Beirut on Tuesday, and it was one of the more magical evenings I’ve had in recent memory. I am very thankful to have been there. Lauren called me during sound check and held the phone up so I could hear “Elephant Gun” in its entirety as I walked down 14th St. It made me feel so lucky.

I am lucky that Clark set a standard against which I can hold others. It only leaves room for the best people – those who encourage and support me, those who make me laugh so hard and then tell me how much they love my laugh. The type of people who pick up the phone and call me when they hear my favorite song.

The results of two melanoma trials, both of which had occurred when Clark was being treated for his melanoma, were presented at ASCO this weekend and featured in a NYT article yesterday. One works with the immune system, and the other attacks a specific genetic mutation that causes tumors to grow faster. Both have shown to add two to several months to the lives of patients with advanced melanoma.

Right there in the fourth paragraph is the sentence I read but couldn’t let myself comprehend at least one hundred times when Clark was first diagnosed: “Right now people with metastatic melanoma — meaning it has spread to distant organs — typically live 6 to 10 months.”

In one trial, 84 percent of patients were alive after six months, compared to 64% who received the traditional chemo treatment (the same type Clark received). Once the success of the drug became apparent, the trial was stopped for ethical reasons and the drug was administered to the patients who had been receiving only chemotherapy.

Half of the patients in either trial saw no benefit. “Still, doctors and patient groups welcomed the progress because until now treatment of melanoma that had spread beyond the skin to distant organs ‘was terrible even by routine cancer standards,’ said Dr. Vernon K. Sondak, chairman of cutaneous oncology at the Moffitt Cancer Center in Tampa, Fla.”

All of this information is astounding. I can’t believe these results. I can’t comprehend the brilliance of these researchers. This is the sentence that really got me thinking, though:

“Even if the new drugs allow patients with metastatic melanoma to live two years, ‘Two years is nothing when you’re 30,’ said Dr. Anna C. Pavlick, head of the melanoma program at New York University.”

I wonder what we would’ve done with two more cancer-filled years. I want him to be here so badly. I read this article right before I went to sleep last night, and I remembered about halfway through the morning that I had dreamed of him. No specifics came to me, but I felt in my chest that I had seen him. Two more years with him would have been a gift. But how does one navigate two years that aren’t supposed to be there, that are destined to end in tragedy?

Clark and I never went to the area of town where I now live. I had to ease myself into the relief I feel coming home to a place that’s not steeped in reminders of him.  When I drive by the last apartment we rented, my memory of him takes a break from humming to clear its throat. In my new living room, I handle thoughts of him at a slower pace, without the interruption of a place where we once had coffee or the store where we bought beer that time.  I felt like I was taking the next step in the life I have to live without him, and that it was an improvement. I even thought he’d be proud of me for giving myself a break, setting goals and looking forward to the future.

This ran in the New York Times yesterday. The whole story, the video – this couple is basically the same as us. They fell in love just after he was diagnosed, and we discovered Clark’s cancer six months after we met. This person, Gavin Snow – even his body looks the same as Clark’s did, deteriorated in the same pattern. Watching this couple interact, this healthy-looking woman and her shrunken partner, recalls my memory of us together, of handling his brittle body. I miss him, and I want to talk to him about it.

“And you would think it would be weird to say, but how lucky can a guy be, or a girl be, to get to have that feeling of kind of, what may be like, pure … love? To think that someone loves you, like, completely, and to feel that before you die … I’m lucky because I know that not everyone gets to feel that or to know that. To know it,” Gavin said.

This video cemented the reality that as I make adjustments, as the two-year mark approaches, I am further from him than I’ve ever been. And to soften that blow, I’ve had to remind myself that like Gavin, I know it. I know the love Clark had for me was absolute. I’m sure that he knew it, too.