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!”