deep in the ocean, there lies a wave for you

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.

My younger brother Nicholas has matured in the past year. I always used to chalk his mushiness, his sensitivity, up to age and the fact that he was, for most of his young life, in the care of three ladies. He was lovesick over his first two girlfriends and spent the better part of the weekends during his freshman year of college driving between home and campus. He’d get there on Friday in time to see the high school football game because his certain someone was a cheerleader.

Now it’s more accurate to say that he’s thoughtful and kind because he’s confident. He recently transferred to a new school and, after a semester living at home, moved out of my parents’ house and into an apartment near Kutztown, which he shares with a group of upperclassmen. A few weeks ago my stepdad brought over some food my mom had cooked for the boys. Nick came down to greet him, and Bill moved to leave, but Nick urged him to stay and eat with him and his friends. He’s not embarrassed to show affection for his family, and I adore that about him. It shows how sure of himself he is, how comfortable he is in his own skin.

When the end of his first-ever relationship was nigh, Nick was a wreck. He moped around and stopped eating. The night before Clark’s first surgery, we were in our hotel room in White Marsh when my brother called. I think, even though we were so scared for what was to happen the next day, Clark was relieved to talk my brother down. It was a distraction that made him feel helpful.

Nick got a version of Clark’s (and my) tattoo last week, and I am so touched. My biggest fear is the potential for everyone to forget what I still can’t stop thinking about, and my brother’s done something out of his love for me and Clark to permanently lessen it. It makes me feel like I did some things so very right.

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.

I got back to my car after a quick five minutes getting coffee at Mid City this morning. It had put a quarter in the meter to get me eight minutes, so I was surprised to see the flash of pink flapping from underneath my windshield wiper. Maybe I parked somewhere weird yesterday and didn’t notice the ticket til just now? That wasn’t the case, though — apparently my inspection expired on February 18. The D.C. DMV just does an emissions test on the car, and it happens every two years, so I hadn’t thought about it. Also I’ve moved so many times in that two years that any notice they might have sent me — apparently they send one 60 days in advance — was delivered to a past residence.

This is annoying on multiple levels. First, I have to pay this $50 parking ticket. Second, I have to pay the $35 inspection fee and a $20 late fee. Third, I have to go to the inspection place (aka hell) as soon as possible, which means Tuesday at 7am.

Inconvenience aside, I hadn’t realized until this morning that the blue sticker on my windshield had a date on it. And maybe it’s because the date coincides with the last time Clark really accomplished anything errands-related before he got really sick. And I remember the day, which was apparently February 18, 2009, that he went to get the car inspected, and we were so relieved that it passed because there was no way either of us was going to be able to fix the car and take it back for re-inspection. He was doubled over in pain when he got to the place; I remember him calling me at work to tell me how much his stomach hurt. I remember thinking, please just get this one thing done. Him being able to get that done meant, to me, that I could go on believing his pain was due to acid reflux. That he was being a baby about it.

Once the task was complete, I remember him surrendering. Getting that car’s stamp of approval was the last thing he felt he needed to get done (the car, with its Virginia tags and the mounting parking tickets, was beginning to take its toll on our nerves).  This was two days before he went into the hospital for emergency surgery on his belly.

Then I find an email in my inbox, a plea to my coworkers at the 9:30 Club — someone take my shift, please.

Hey guys,
Clark had an emergency surgery on Friday to remove a tumor in his gut that doctors found on Thursday. Everything went well, and the tumor is already looking like it’s going to be the one to make his treatment! But, he’s going to be in the hospital for about a week because they dealt with some intestines and everything’s got to be back in … working order … ahem … before they let him out.
So here we go again. Box 2 on Saturday, any takers? It’s Dan Auerbach from the Black Keys, 8 pm doors. If you can do it, I’ll be able to cover again come March.
Thanks,
Rebecca

It’s astounding to me now how nonchalant this email is, how I had to keep my cool to deal with the weight of this surprise. “Here we go again,” I say, so casually.