deep in the ocean, there lies a wave for you

HOLY CHRIST.

“On the morning of May 12, Mr. Ryan and his mother drove to U.C.L.A. The cancer had spread throughout his body. Yet that weekend, the family was filled with hope. Dr. Chmielowski had found the same gene mutation that Mr. McLaughlin had in one of Mr. Ryan’s tumors. He was finally eligible for the trial.

But the computer made its assignment the following Tuesday, making sure that he would not be getting his cousin’s ‘superpills.’

Mr. Ryan’s mother picked up the call while her son was undergoing radiation for the tumor on his spine. He was on oxygen.

‘I’m sorry,’ Dr. Chmielowski repeated as she cried into the phone.

There must be someone higher up to whom she could talk, she said.

There was not, he told her. It was completely random. No one could change it.

‘Who else has this drug?’ Mrs. Ryan demanded. ‘We will go wherever we have to go.’”

“He told Mrs. Ryan, if the chemotherapy could stabilize her son for just a month or so, there were two new trials opening that might help him.”

I’ve been forming a blog entry in my head about how lately I’ve been feeling really excited about the future for the first time in a long, long while. I signed up to take a class called FemEx (the Female Experience), where a bunch of women get together to talk about sexuality and body image and issues that affect the ladies. People said they share things about themselves in this setting that they haven’t told their closest friends or family members, which obviously made me want to do it, along with the fact that I’ll learn things from my classmates’ stories of their experiences. I’m also forming an idea of what I want to be when I grow up, which involves going back to school, and which will probably happen in 2012. But I feel really positive because I’m not spending hours reading through Clark and my old Gchat conversations, I’m looking up master’s programs. Plotting baby steps on my course. And I feel like I finally have a grip on how Clark will shape the rest of my life, and it doesn’t involve nursing school (which I previously thought had to happen).

But I woke up this morning after an intensely vivid dream in which Clark was alive and visiting me. I felt the bumps on his thighs and thought, well, it’s been over a year and these have barely spread! He must be OK, and the cancer hasn’t grown. And Clark kept saying he had to go and catch his overnight flight home, which in my dreams is, apparently, somewhere abroad? “Can’t you just stay here so we can hold each other for a while?” I asked him, word for word. And I woke up crying, and now I’m having the kind of day where I face the reality that I will never see him again and I can’t really handle how much I miss him and everything feels like a gigantic mess.

Over the past few weeks in therapy I’ve learned that my struggle today is partly Clark’s absence and partly figuring out who I am post-Clark. And post-Blade! I had totally brushed off the impact losing my job has had because in the grand scheme of things that have traumatized me, it barely registers.

But when you think about it, I worked at the Blade from May 2007 to November 2009. It combined my journalistic background with my love of the gays and securing their rights. The first night I met Clark, he asked for three things about me, and “I work at the Blade, but I’m not gay,” was one of them. My job there was part of my definition. And then, five months after Clark died, I lose that part of myself as well.

When Clark was sick and I was a warrior against his illness, I got to prove my love to him constantly. One day I’d have to figure out how to get him into the bathtub using my own strength and a wheelie chair. The next, I’d have to figure out how to clean poop out of the tub with him still in it. I sacrificed my own health and well-being in order to give him just a little bit of relief. Every day was a test that I aced – but it was easy to do well because I loved him more than anything. I was good at it. And it was easier to demonstrate how deep my love ran for Clark than it is to take care of myself and figure out my identity today.

The good news is I appreciate tiny revelations. Today at the beginning of my session, I said something about how I’m the type of person who likes to have the dishwasher empty before I start to cook a meal, and by the time the meal’s being served, all of the dishes used to prepare it are loaded up into it. That’s a thing that’s always been true about me, and I kind of like it. And over time, I’ll put all these pieces together – the old bits that’ve hung around, the new bits that Clark’s life and death have brought, and the who-I-want-to-be-now bits that I haven’t even thought of yet.

From my perspective, the most horrible fight of Clark’s illness took place when he was given high-dose IL2 in the winter of 2008. IL2 is an immune system-boosting molecule that occurs in all of our bodies. Given in such large amounts, it’s toxic to the body, but in 5 percent of cases, it delivers a total remission. And you have to endure it in order to qualify for the other trials at NIH.

The treatment makes a person so, so sick, and Clark was no exception. The nurses kept him on constant watch as his entire body swelled with fluid from capillary leak syndrome. He experienced horrible flu-like symptoms – aches, nausea and vomiting, diarrhea, fever, chills, discomfort. As soon as a nurse would change his sheets, he’d soil them again, and he could barely move, which made cleanup painful and difficult. It also affected him mentally, and turned him temporarily into a different, nasty person. Clark had an episode on IL2 that caused me to leave him alone in the hospital overnight – the one time I did this voluntarily.

During our time at Georgetown six months later, as we digested the fact that Clark had only a few weeks to live, the oncologist on call made his rounds for the weekend. He was a nice man with good intentions. But he threw a wrench straight for my gut when he pulled me aside and said, “Well, he’s just so young, and he didn’t even get the full dosage of IL2, are you sure you don’t want to try a different type of chemo?”

A full dosage of IL2 was 12 rounds, two times, with about a week between treatments. Clark had eight rounds, a week break, and another four rounds, and from what I saw, there was no way he could’ve possibly done more than that. Didn’t get the full dosage? I was angry at this doctor for causing me more distress while negating what Clark – and I – had been through.

I was poorly digesting the fact that the one I love was quickly dying. Him dying was then, officially, the inevitable. And a medical doctor asks me if I’m sure I’m willing to give up. At this point, Clark had a colostomy bag, an ever-flowing IV of methadone and a supply of oxycodone. He couldn’t walk. The night before, I had pushed two hard-backed chairs together and lay across them to go to sleep, scrunched to fit. He, panicked by his future’s disappearance and the soon-to-come unknown, asked my mother if his death was punishment from God for his sins.

Last weekend I read a New Yorker article from about a month ago titled, “Hospice medical care for dying patients,” and it both broke my heart and took away some of that pain. Today, more than a year later, my rational self knows he didn’t have any more fight left in him. His body didn’t work anymore. But in a dark, lonely moment, I can still become plagued by what that doctor said – are you sure?

We did the right thing by stopping treatment when we did. His last month was beautiful and productive. In hospice, he had an epidural and a team of doctors ready to make him comfortable. He accomplished so much. We did the right thing.

Three years ago today I met Clark. Most who know me already know the story of how I stumbled across him at the Black Cat bar.

Before I went to the Black Cat that night, though, I met friends for a birthday happy hour at Fox and Hounds, this bar on 17th Street. The last thing I did before I met Clark. I haven’t been there since. A different friend of mine, one I’ve only become acquainted with in the past year, sent me a message yesterday asking if I was coming to her birthday celebration. “Yes!” I wrote. “The show at the club was canceled and now I don’t have to work! What’s the when and where?”

And she said: “Tomorrow! Fox and Hounds! 8:30!”