deep in the ocean, there lies a wave for you

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.

I realize I haven’t looked at a picture of Clark’s face in a while. In the photo I keep next to my bed, he’s watching the sunset, his back to the camera. I find a shot of us, and look at his mouth, the way his teeth were spaced and shaded by smoke and coffee.

I picture his lips, like putty, moving to form a greeting as I’d enter his hospital room. My heart writhes when I see their movement, how the top skimmed the bottom as he whispered hi, baby. He’d close his eyes as he said it and sigh, his expression settling on a slight upward turn.

I wouldn’t change anything about this ad except … I would make it a little bit shorter so that I could be sure people watched the whole thing.

If some of your colleagues are men, and you work in a casual environment, you’re familiar with the “Oh, it’s going to be above 60 today? I will wear shorts” phenomenon. It never fails. It was like that in high school, too, and it got to the point where the principal needed to regulate by declaring when it was officially permitted. If there wasn’t a rule, the boys would be wearing shorts as soon as the snow started to melt.

Yesterday it was 80 degrees out, but I still wrapped myself in a cardigan before I left the house and kept it on all day. It’s not like, ohh, I wear long sleeves even in the summer because when my boyfriend was dying of cancer in the hospital I was always wearing sweatshirts because it was so cold in there and now it’s like, “my thing,” wahhhh. I mean, it is true; I did wear warm clothes all the time when Clark was sick. Mostly I wore his clothes, these black thermal undershirts. But no, I’m not STILL wearing sweaters as some sort of homage to this really tough time. However, they do give me a feeling of protection, like a blanket shield. Like I’ve got my guard up, which I do. And I’m not really hot when I choose not to wear shorts and T-shirts. But I do feel safe.

It’s like how I prefer to drink red wine all the time, even in August. At the first glint of summer sunshine, Cella’s uncorking a bottle of pinot grigio. But last night at the bar, even though my face still hadn’t de-reddened from the gym and my body was swathed in a layer of gray cotton, I had two glasses of a Syrah that I’ve had dreams about drinking. The wine brought the same feeling that my sweater gives my body to the pit of my belly.