Monthly Archives: September 2016

Alone

Most of my worst thoughts hover around a single word.

Alone.

For a long time, I felt like I was the only person in the world who will die. It was the weird feeling that began in the haze of my diagnosis. I remember standing in the lobby of Duke Hospital, waiting for them to admit me. I was talking on the phone to my friend, Margaret, with my hand on the window.

“I feel like I’m behind glass now. And you’re all on the other side.”

Even today I still feel it in the moment between shaking someone’s hand and the spark of recognition in their eyes. Oh, it’s YOU. And then they cock their heads to one side like sorrowful cocker spaniels.

It is true that there are some things I’m always going to have to do alone. It’s the deep breath I take before they put in a fat needle into the port in my chest. It’s the sinking feeling in my stomach when the doctor holds the test results. It’s the catch in my throat when I watch a little baby curved into the dip of a new parent’s shoulder.

I am locked inside this body, which is failing me. And it keeps me from breaking through, back to the life I want.

But this is also the truth: I am never alone. You are with me.

I come home and there are cookies in my mailbox from Katy. Last week Mandy sent me smelly pencils (called “Smencils”!) and I am hooked on the grape one. Molly made me a crossword puzzle where all the clues are drawn from American religious history trivia. Rob, my doctor friend, talks me through some recent findings. Andrea, my college roommate, e-mails me funny videos to watch during chemo and my little sister Maria sends me funny articles with titles like “Types of Guys I Would Like to Date, If Anyone Could Please Introduce Me to Them.”

I was late to a meeting the other day because at the faculty meeting I had gotten too many hugs.

These little things…..they are the cure. They are the cure to loneliness. They are the cure to self-pity. They are the cure to boredom and exhaustion. These are the little whispers: youareloved, youareloved, youareloved. I can feel it in moments of divine closeness when God seems to say, I am here. And I can feel it when I open my mailbox and my sister in Toronto has sent me brown eyeliner. She KNEW I needed brown eyeliner.

I check my e-mail and there is a note from an academic colleague who tells me a funny or a sweet or a sad story and I can hear them saying: “I am here. You are here. We are here.”

The most alone I have ever been is when I woke up from my surgery. The room was empty and all I could hear was the chirping of the heartrate monitor. The hospital had, of course, taken everything that was familiar to me. My dress I love to teach in. My ring from the man I love. All I had was my hospital gown and a carved up body I hardly recognized.

And then I saw it. Something around my wrist. It was a bracelet.

But not just any bracelet. It was a slap bracelet, the kind I played with when I was ten and they were all the rage. It was such an absurd situation, the more I thought about it. Someone had crept into my room, past security, and quietly slapped it on my wrist so I would have it when I woke up. It was bright neon. It was hideous.

And all it said was: FIERCE.

So, yes, my dears, I must be brave. But you make me fierce.

The Hard Way

A photo by Ales Krivec. unsplash.com/photos/4k-U1Wp2d00

“There’s the gradual, long way up the mountain—and that’s the easier way.”

My oncologist is looking at me very sternly, which I know is difficult for him. He’s very nice, and this is the closest thing he’s ever given to a lecture.

“And then there’s the steep, fast climb—and that’s the harder way. You’ve been used to the hard way,” he says and he is right.

I have grown used to being blasted with chemotherapy drugs. Drugs that fill my mouth with ulcers so that some days I can’t speak. Drugs that scorch my skin so that some days I can’t walk. But that’s not what he’s trying to say. He knows I’m hooked on the hard way.

“I’d rather you kill me trying to cure me,” I tell him and there is a long silence afterward. We both know what he should say and I’m grateful that he doesn’t. They are not trying to cure me. I’m not going to get to the top of the mountain.

He has been trying to lower my drug dosage, space things out, and ease up a little on the regimen but he knows this is tough for me. I liked the idea that I was doing the harshest thing, that I was really getting somewhere. But now it’s time for me to accept something harder: I’m not sure I can do this much longer.

It’s like this: my treatment has been like swinging on three vines. Two chemotherapy drugs and one immunotherapy drug. I already had to stop one drug because I was losing all feeling in my hands and feet. Snip snip. And now I have to think about cutting out the other chemotherapy drug. I’ll be swinging on that one immunotherapy vine, hoping it holds me up. Please God, make it work.

“So if we stop chemotherapy now and my tumors grow….” I say uncertainly.

“Then we can restart chemotherapy. Worst case scenario, your tumors grow 20 percent by the next scan,” he says quickly.

“But if the immunotherapy drug doesn’t work then I am going to die anyway.” My voice sounds flat and matter-of-fact, even to me. “Right? I mean, the chemo drugs are already fading.”

He is trying to reassure me but I can’t quite hear the words. I am staring at my hands, puffed with chemo toxins and the color of rhubarb. I have come to the end of what I know how to do. I know how to suffer. I know how to make the best of things. But I don’t know how to do the most basic thing—I don’t know how to stop.

—–

I am sitting across from the man who won a Nobel Prize for his discovery of my particular form of cancer, the cell disorder that caused these tumors to bloom. For all his many efforts, his thousands of hours in the lab, I have brought him cupcakes. With sprinkles. It’s a fair trade.

We have both, as it turns out, spent a lot of time walking up the edge of things, and we are talking about what it means to face facts.

“I’m not sure I want to know what happens if I stop chemotherapy, but at the same I want to get it over with,” I confess. “What did you do?”

“I went to work,” he says, and I realize the weight of what he is saying. His office is plain and sensible, which confirms something I already know about him five minutes into our conversation. He is there to work.

In the worst moments of his life, he put one foot in front of the other. He tasked himself with a series of responsibilities that ultimately gave me back this year. And maybe many more. But what I loved more than anything was that he did it without knowing it would matter. He marched forward because it was the best he could do.

“We’re all terminal,” he says simply, and it answers my unspoken question. How do you stop? You just stop. You come to the end of yourself. And then you take a deep breath. And say a prayer. And get back to work.