Sing for your Supper

I got to introduce a friend to ‘chemo day’ yesterday. Chemo day usually falls on a Tuesday, and for one reason or another, the day has become steeped in ritual. A new friend of mine, Jason, expressed an eagerness to join James, Erin and me for my labs, doctor’s appointment and chemo infusion, so I took him up to the hospital to meet ‘the gang,’ as the hospital staff are coming to be known. The process is tedious at most: I wait with whomever is with me for hours at a time before each activity of the day is accomplished: the needle that’s injected into my spine to give my Central Nervous System protective drugs, the forty minutes it takes for the anti-nausea drugs to settle in before the IV chemo can be administered. Normally, this is a long, boring procedure, but with friends, suddenly the time flies by. Well, okay no. It's still boring as dirt, but at least you're not alone in the misery!

Jason seemed intrigued by the rituals we’ve created around this day. I usually try (frantically) to get my business done earlier in the morning so that there’s no unfinished tasks to be completed. Chemo days, I have learned, are not days to try to get work done. There’s work happening, very different work, but not phone calls, not bills or obligations. I try to meditate and relax before heading up. After a day of drugs, an impromptu barbeque led me and my two sibs over to a house Jason was watching for a friend. Jason's hospitality was spot on, as he prepared small appetizers and munchies for us to snack on while he grilled ahi tuna. As we assembled the meal, he seemed a little taken aback, once again, by our family's formality over the presentation: the way we would set the table, bring out the wine, etc. I explained that where much of it comes from was last summer when James and I were caring for a friend of our family’s with MS. Because of our friend’s restricted condition, meals became the big events of the day. Over the last year, not only because of my own fairly ‘restricted’ condition, but also to encourage me to eat on days when I’d be feeling nauseous, we continued and elaborated on the tradition. Something about what disease takes from you makes you feel like putting in even more effort to counter-balance. Formal table cloths get pulled out, candles are lit, the perfect music found. Musing on the way we ‘play house’ with this aesthetic, I thought about the reason behind it. Each meal where we bring together beauty and friends feels like a small, humble Thanksgiving feast to me. It becomes an event because each participant acknowledges it as such.

After dinner, James and I broke out our guitars, another friend of Jason’s came over, and we sang and jammed as the candles burned. This is my favorite part. I love to sing for my supper, even on a day when I’m feeling grimey from chemo. As we drove our car home, tired, hoarse from singing, and stuffed with delicious tuna, I turned to my siblings. “You know why I love making dinners an event? Because that’s exactly what they become, a true event.” Next time, I’m pulling out the china.

Trial by Error

I get so frickin’ tired of square one sometimes. I can feel myself grabbing at straws as of late, trying to find something to place my faith in. For a while now, I’ve felt two opposing forces pulling on me. There’s the one side, determined to rekindle my passion: passion for art, passion for romance, passion for life that seems to have been replaced over the past year with—how do I put this—passion for survival. Then there’s the other side. Rational. “You’re still going through chemotherapy. In fact, you’ve got another couple years of it, bud, so sit down and get comfortable with this state.” I get so frickin’ tired of getting comfortable. For a year now I’ve gone to bed on time. I’ve drunken the proper teas and stayed away from alcohol and found my zen center through transcendental meditation and every other new age ritual you can think of. And I still feel stuck, trapped somewhat in this harsh limbo where I’m unable to pick up the momentum of my life, but frustrated with every second I have to sit back and wait.

I was meeting a guy up in Park City tonight for a concert. I was excited to be going out, but I arrived at the venue (an hour’s drive away) only to discover that I’d forgotten my ID. As I drove back down the canyon, I felt defeated. The whole evening felt like I had tripped, fallen. I feel like I’m doing that a lot lately. I went to apply as a volunteer at Primary Children’s Medical Hospital. I can’t be around the children with a compromised immune system. Oops, another trip. Even my decision not to go back to New York can sometimes feel like a retreat back to the drawing board. If not New York, then what?

I know I’m alive, and that’s something tremendous to celebrate right now, but at the moment I don’t feel the fun of being alive. I promised myself when I learned about the full length of my chemo treatment that I would not wait until the end of this to be happy. I would not just ‘get by.’ I would seek out happiness actively, relentlessly, until I found it. Nobody told me that this journey would come with so many nose dives.

Something will come, something always does. When it comes though, will I have the gumption I used to have to seize the opportunity? The question, like all, will answer itself in time. In the meantime, it’s back to the drawing board. Perhaps it’s time to hire a new creative staff…

Normal

A strange phenomenon seems to have been taking place the past few weeks. For the first time in almost a year, I’m starting to feel normal. My clothes fit just a little bit better, my energy lasts a little bit longer. Even my little brother Zach noticed. “Wow,” he commented at a get-together a few weeks back. “You’re starting to look like a real human being again.” When did this happen?

For a year now, I’ve been a ‘cancer patient.’ Life has revolved around hospital visits and necessary routine and chronic pain and the inability to think about or concentrate on anything else. Suddenly, almost without warning, I’ve been thrust into a new phase. The hospital visits are much less frequent. My energy, while still low, is increasing. The free time that before was spent lying on the couch, too weak to imagine anything else, is suddenly my own again. It’s terrifying! I thought this would be exciting and thrilling and that I’d jump right back into ‘life as normal’ when the opportunity was given. Instead, I find myself questioning every morning whether I should go to the hospital, just to check. Or whether going out is really such a good idea. In the past, I’ve run into situations where my energy suddenly dissipates and I’m far from home, which is a bad combination for me. But I’m reminded by friends that my ability to complain about anything shows that I’m getting healthier, so deal with it!

In a conversation with a friend yesterday, we both commented on this transition. No longer am I just a ‘cancer patient,’ but now a cancer survivor. It’s a very new identity. I’m not quite sure what to do with it at this point. It feels as if I’ve been marooned in Narnia for a year and somehow I just managed to step back through the wardrobe. The world is at it was a year ago, but I’ve changed profoundly. How did those four kids deal with that rift in experience when they came back? I imagine some sort of mourning ritual where pictures of Tumnus the faun and Aslan were enshrined. Lots of candles, I’m sure. In a similar way, the challenge for me becomes contextualizing the past ten months, never an easy task. I’d like it to make sense in the larger picture, but right now it’s too raw, too close to be able to focus on it. And this new identity is too unknown to trust. What does it mean to have survived cancer? Where do you go from here? I keep thinking about one of my favorite quotes from the movie “Willy Wonka and the Chocolate Factory” when one of Mr. Wonka’s reluctant guests tries to reverse the group’s forward journey. “Can’t go back,” Wonka shouts. “Have to go forward to go backward. Better to press on.” So press on I shall, as always, into the unknown.