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.

The Secret

“Ms. Bowler is an unfortunate 35 yo F w/ newly diagnosed colon cancer, likely metastatic.”

“Ms. Bowler became emotional when discussing the implications of her cancer diagnosis for her son. She stated that she had a good support system among family and friends. Ms. Bowler maintained a sense of humor during the appointment.”

Doctor’s Notes, September 2015

watch

I called my mom before the surgery, one year ago today.

“Rick told me the secret,” I said. But the more my mom pressed for details, the more it was obvious that I was on a lot of exciting pain killers. And that I had forgotten the secret entirely. My mom said it took me weeks to remember.

Rick had come to see me. He sat down beside my hospital bed and took my hand in his. “I wore this clerical collar to impress you,” he said gravely. “And to get through hospital security.”

Rick is probably my oldest friend. I mean, he is literally the oldest person that I sit down with and pour out all my diary feelings. He is not going to like this rendering of him, but he is one of the greatest people I know and he did, in fact, know the secret.

I had been trying to keep it together until that moment. I had already called my best friend to tell her what she must say to my family if things went another way: You were perfect. Kate could not have been a more loved daughter, a more loved sister. I had already told my sister-in-law in no uncertain terms that she would be the one to help Toban move on with things and to find happiness in every way. I had tried to put things in order and sew them up. I had saved all my questions.

“Will I ever go on a trip again?” I asked him as he sat down. My world had gotten very small. This room. That surgery. No one could tell me when I would be able to see my son. Cancer had eaten up all the space and gobbled up all my time.

“Oh, of course you will,” he said and I believed him. I believed him because he had lost his boy at my age and he knew what it was to count costs and count time.

There was a lot of silence as I struggled for the language to ask my next question.

“Do you think when we die that we won’t be so…apart? That maybe because God sees things in a single moment that it might be the same for us?”

He knew what I was asking because he always knows. Will I miss everything? Will I see my son sprout up and learn the rules of Canadian football? Can I see him graduate and be launched into the world? How many times can I sit beside his bed and watch his eyes squeeze tight as we thank God for tractors and the sticks we throw into the stream near our house. These are the plans I have made. These are the hopes that are being ground into dust.

“Don’t skip to the end,” he said, gently. “Don’t skip to the end.”

—-

“What do you think I meant by that?” Rick says to me last week, sitting in my office. He can’t remember saying it because it was such a blur. We are marveling at a whole year gone by, a whole year that the doctors said I had a 30% chance of surviving.

“I think you meant that we just can’t know. And that our brains fill in all the details, for good or for ill. We want to tell ourselves a story—any story—so we can get back to certainty,” I reply, “You know me! I am so desperate to know what’s going to happen. At least so I can prepare.”

“I sound really deep,” he says.

“You ARE really deep,” I shoot back, laughing. “But Rick, I just need to make it to 50. I need to make sure that kid is launched. I need to get most of my life done. I need to lock it down.”

“But it comes undone. There are so many times in life when we think we have it locked down,” he says. We are quiet again.

Plans are made. Plans come apart. New delights or tragedies pop up in their place. And nothing human or divine will map out this life, this life that has been more painful than I could have imagined. More beautiful than I could have imagined.

“Right. It’s the secret—don’t skip to the end,” I remind myself, sheepishly wiping my face on the sleeve of my sweater.