deep in the ocean, there lies a wave for you

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.

I had heard many a person’s account of Spa World, and amassed the descriptions to form a disjointed image of waterfalls, steam rooms and Korean food. I thought I knew a little bit about what to expect — and fear, since I’d been warned about the nude aspect. In reality, it was unlike anything I had pictured.

A wave of confusion washes over you as soon as you see the place, which is in a strip mall in Centreville. You pay for admission up front, and tell them you want a massage (or a body scrub, your choice) too, which they schedule by shouting into the phone. But they don’t want you to pay for the massage, they say, so you go over to the locker you’re assigned and put your shoes in it. I tried to put my purse in it, too, but some nice ladies took pity on me and told me that a bigger locker with room for all of my things awaited me. They give you a key with a number on it that you’ll use to buy things and unlock your big locker. At the end, you’ll pay for what you’ve charged to the key before the final step, retrieving your shoes.

The locker room is full of naked people, which is weird at first, because you’re wearing a coat. But you go to your locker and strip down. I wasn’t quite ready to venture into nudeytime, so I put on the uniform given to you upon arrival. I’d been warned by Jeanne that the orange shirt and shorts combination wasn’t nice to look at, and Jessica and I kept giggling to each other throughout the day and repeating Jeanne’s disclaimer: “I mean, it is ugly.” The purpose of the hideous and misshapen outfit is to mask any sign of genitalia, which I appreciated once we got into the co-ed area, which was full of poultice rooms ranging in temperature (from 60-something degrees to around 170 degrees). You go in these rooms, read things, lie down, sigh, roll around and sweat. It ruled. In the best room, you lie on top of a million little red clay balls and let your hands and feet sink into the pit.

Then I got my shiatsu massage.  I heard an emphasized intake of breath when she got to my shoulders, which were SO KNOTTY. I felt some pain while she kneaded the crunch out. She also walked on my back, butt and legs, and it was the best feeling in the entire world. My whole body shivered with joy as I drooled and moaned as quietly as possible. When I got out, Lauren and Jessica took one look at me and laughed — I couldn’t stop smiling and my face omitted rays of light. Seriously. Shit was the best.

The food was delicious, and then we braved the nude part, which wasn’t so bad because EVERYONE IS NAKED. No one can hide anything, so what’s the point of worrying about your own insecurities? I went from hot tub to wet sauna to pool, and it was glorious. When I got home, I fell asleep almost automatically.

Putting future trips to Spa World in the “things I deserve” file.

Addendum: I did some math, and to go every day for a month it would cost around $1050 ($35 x 30). And there’s wi-fi and separate sleeping quarters for men and women. So, I’m thinking I just move in? Lauren, Jessica and I already discussed the possibility of someone decorating a Christmas tree in the corner.

Today Gawker pointed to a study of 500 people, each with a history of melanoma in his/her family, who said they’d rather be tan than take precautions against getting skin cancer. Gawker said, “A new study shows that even people with a history of skin cancer in their family don’t wear sunscreen and prefer to go tanning. Know what doesn’t give you a healthy glow? Chemotherapy. Just saying.”

The mocking tone is spot on. However. Guess what they don’t do to you when you get melanoma? Give you chemotherapy. Because it only works in 5 percent of cases. Which means treatment options following a melanoma diagnosis are very, very limited.

I know I shouldn’t expect too much out of the New York Daily News, but I can’t help but feel infuriated by the article printed on the study. There are a couple of quotes from people who won’t give up their tan because they want to keep their “shiny glow,” and the only paragraph on actually developing melanoma merely says this: “More than 58,000 Americans developed skin cancer in 2007, according to the most recent statistics available. That year, 8,461 died from the skin tumors, according to the federal Centers for Disease Control and Prevention.”

That’s it? That’s all we get in this news article meant for the layman regarding melanoma, that which cannot be cured by the standard chemo and radiation? The cancer that struck 70,000 Americans last year and is “almost always fatal” within a year once it metastasizes?

Even Gawker’s biting line, the zinger that’s meant to make fun of the people who risk their lives to be a shade darker than natural, lacks that accuracy. And that shows how little the public knows about this type of cancer, three years after Clark’s initial diagnosis, after I have seen things that I am just now remembering because they were so traumatic, and that makes me feel unacknowledged.

Thanks to Amina for pointing me to this, which is written so wonderfully. I am grateful to others who find ways to articulate these feelings.

“‘It hits you in the middle of the night — well, it hits me in the middle of the night. I’m out walking. I’m feeling quite content. And it’s like suddenly, boom. It’s like you’ve just done that in your chest.’ Here Neeson reaches out and twists both hands in opposite directions, like he’s corkscrewing two ends of a soda can, reaches toward me so it’s clear: This is in his chest. He shakes his head at the thought of this one thing, this single hideous bead on the necklace of his life. He speaks as if he were regarding its cruelty anew, though this too cannot be. He’s too smart to feel singled out by what happened to his wife. Her death, with its painfully curious timeline — the simple fall, her apparent clearheadedness, followed by the swift, merciless brain hemorrhage? Brutal and extraordinary. Neeson’s experience at the hospital — the mix-up at reception, the chaos of the ER, the arrival of the security guard? Vivid and, at the same time, banal. Just another hospital story; everyone has them. This doesn’t mean they don’t hurt. When he says, ‘It’s just extraordinary,’ Neeson is referring to the persistent depth of pain, the ruinous visitations of grief, even now, two years later. That stuff is all his very own.“

I am also thankful to this author for using the phrase “just two years ago” earlier in the story.

My mother and Clark had a special relationship. Sometimes he’d call her on his own. Just like he and I had moments that break my heart, they had theirs. I was a little surprised at first at how he latched on to her, how much he loved her, how willing he was to share things with her, if only because his comfort level increased so quickly. Sometimes he let her in instead of me, like at Christmas in 2008. My mom told him how grateful she was to have him in her life and how much she loved him, that he was there. There will be many more Christmases, she said, as full of forced optimism as I was. “Mom …,” he said, looking at her like, come on. You know there won’t be many, or any, more of these. A plea for someone to validate his fear.

I can’t write about the time they last said goodbye without crying, so I’ll write about it while crying. She went to leave the hospice room. She kissed him on the mouth. “One more,” he said. She gave him one more. “One more. One more. One more.” Over and over again.

Now she has dreams about him that are unlike mine. He comes to her as spirit-Clark, tells her he’s okay, says he kisses me every night before I go to bed. “I’m fine, mom.”

If I’m not having those dreams, I’m glad she is. It’s the next best thing.