Resilience (11 page)

First a lovely technician did an X-ray. Maybe the rib had fractured. I was now praying for a fracture. I lay on the table as she prepared for the X-ray. She maneuvered the machinery over my pelvis. It is my rib, I said. I don't have an order for an X-ray of your rib; I only have an order for your pelvis. I started to cry. I don't think until that moment I recognized how afraid I was. Her young voice became maternal and comforting. She would take care of it. A few phone calls later, she was taking X-rays of my ribs. Dr. Carey's nurse Leslie called: There was no fracture. The next morning I would have an MRI, and the following day I would meet with Dr. Carey.

Cate was home for Christmas, so she, John, and I sat in yet another hospital room waiting for the MRI results. On other days, Dr. Carey would come in and her first words would be:
You are fine.
She did not start that way. This time, the already metastasized cancer had spread. A couple of places were slightly larger and there were two new sites. She said the words softly, serenely, alternating looking at me and at the report in her hand. There was, however she tempered the results, only a minimal rise in the tumor markers in my blood tests.

I didn't hear the words “minimal rise.” I still don't hear it. All I heard is that the cancer is growing again. I had expected to hear it, but that didn't help. I had felt it, I had looked it up. It could only be one thing, really, and yet hearing the words was so much worse than I had thought it would be. My chest felt tight and it felt like blood was rushing to my forehead, pushing at the backs of my eyes. The Christmas tree was up at home; half the presents were wrapped; the kitchen counters were covered in cookies and pies. But that last Christmas—was it this one?—was just that much closer. I would like to say how brave and stiff-lipped I was, but that would be a lie. None of us were, really. Cate sat perfectly still, her hand on top of mine, watching first Dr. Carey and then me. John leaned against the wall and could not look at me at first. When he did, I could see that he had his own version of pain and fear. We listened, agitated, near tears. What are the options? She suggested one. One? Is there only one?

I am now back on a medicine that I had been on before when the cancer had not spread. I had been on it for about nine months after the metastasis was first diagnosed. The same medicine? Was that it? I wondered. Should I have never gone off? Should I have insisted that the side effects, stiff dry hands and feet, were fine? Should I not even have reported them? I could second-guess myself, but what did I know, really? I depended on Dr. Carey, and she seemed calm. I tried to steal some of her serenity for myself, but I could not. I was panicked, and I was angry, too. Off one drug, then back on the same drug? Wasn't there supposed to be an arsenal? Where is the arsenal? I wanted to know. At the first sign of the metastasis in 2007, we were told there would be an arsenal—one drug works until it doesn't work anymore and then we go to the next drug, and all the time I am taking the next drug, researchers are working on the one that will follow that. An ever-growing arsenal. One and then the next. But I was simply going back to what I had taken before. I had depended on that arsenal.

If this doesn't work, will there even be another drug? I asked Dr. Carey. Will it work? I asked myself. At home, I stand up and I feel a pinch in my leg and I cannot move it, and I wonder: Is this it? Is this the beginning of it? Each ache, each pain, each mark is a reminder: Death is inside me, waiting patiently, and it, not I, will decide when an ache is more than an ache. And that is my new reality. I wanted to grab hold of my old life, like the warrior's wife with her new changed husband, new changed reality fighting for what used to be. But my old life was gone. I had no idea how much of this new life I had. As I had traveled, generous warm people had told me of their aunt or a colleague who had lived twenty years, twenty-five years after metastasis. Their good fortune had been a four-leaf clover I kept in my pocket. It had happened to them; it could happen to me. But I wasn't feeling particularly lucky anymore.

I knew that I have to get ready to die. There still is no prognosis on which I can rely. If I had a timeline, it would make every decision so much easier. I do not want to plan to die. All I know is that it will be at my door more quickly than I want. I don't think, as it comes, I will have my father's grace. Now, despite my words that I have a reason why death would not be so terrible, I want to live. I admit that I spend a great deal of time pretending that I would be fantastically lucky to live a decade, that I would be happy to have another decade when I know I want much more. But just as there is more than a decade, there is also less. There are moments when I believe death is only a whisper away. I try to get the teeter-totter to balance somewhere in the middle; it is rarely possible. When my mind teeters to death, I push off as hard as I can, trying to land on life. Mostly I can do that.

It does not do me much good to talk about it, to spend some of my living time planning to die, giving more of me to the disease than it will ultimately demand. But I cannot pretend I didn't wish I knew. I cannot pretend that I didn't wish the disease was in my control. All that is in my control is how I live now. I could fill the days with fears—there are plenty of those—or I could fill them with the best joys I can cobble together. My husband wrote, in his book
Four Trials
—in part, I admit, on my recommendation, “I have learned two great lessons—that there will always be heartache and struggle, and that people of strong will can make a difference. One is a sad lesson, the other is inspiring. I choose to be inspired.” There is enough unhappiness and pain to fill my days, but I choose to be happy.

Until I know—and the only things I can really know are that researchers have found a cure or that my death is imminent—I fill my days with things that matter to me and I find comfort where I can with those who have loved me perfectly or imperfectly. In 2004 when my cancer was first reported, I turned, as I often have, to the Internet for support and comfort. There, on Democratic Underground, I read a comment someone had posted under a thread offering me support. The comment included lines from a Leonard Cohen song, “Anthem”:

Ring the bells that still can ring.

Forget your perfect offering.

There is a crack in everything.

That's how the light gets in.

It has become my anthem. I did something unlike me: I had the words placed on the wall high in my kitchen, a reminder that the pain, the loneliness, the fear are all part of the living. There is no such thing as perfection, and we have a choice about how we integrate the imperfect into our lives.

The idea that we—even, maybe particularly, those of us in the public eye—lead some sort of charmed and perfect lives is, sadly, so far from the truth. Everything in the fish-eye lens we have of our own lives is distorted, and as that lens moves across our stories, different threats loom large, outsized by the public view, dwarfing all the pieces so perfectly placed for that perfect life. The trick, I suppose, in a public or a private life is to recognize that the outsized monsters are distortions and that in real life the ground and the sky are in the right place and the foundations that we built are, likely, still standing. I was testing that, surely, but I was determined to adapt to the distortions.

Perhaps it was 1998 when Roger Elliot, our minister at Edenton Street United Methodist Church in Raleigh, gave a sermon in which he talked about a congregant who had called him. I am overwhelmed, the man had said, and I need to see you. Roger, of course, saw him and listened as the man complained of all that was wrong with his life, financially, spiritually, personally. He felt as we all often feel: helpless against high odds, alone and without options. The man volunteered that he felt like Phil Connors, the weatherman played by the brilliant comedic actor Bill Murray, who wakes up every morning and it is, again, Groundhog Day. I am like Phil Connors, he said; every day is the same miserable day over and over with no hope of that ever changing. I think he must have left before the end of the film. Phil Connors was wretched, certainly, and every day—especially the exact same every day—was undeniably lousy. Phil didn't even stop to think about what he wanted; he, like the congregant, just complained. He almost basked in and definitely reflected the misery of a life symbolized by the banality of grown men waiting in a cold rain for a groundhog to appear. Phil was nowhere and going nowhere, just as the congregant felt was true of his own life, and they each had fallen into a reliable misery. Roger went on with his sermon, but admittedly I stopped listening as closely to Roger and sat there thinking about the story.

I had had just the opposite response to
Groundhog Day.
Phil Connors awakes to the same unpromising day morning after morning—a strange hotel room, an annoying alarm clock, a meaningless job, a beautiful coworker who found him unbearable, all set in a simple, unsophisticated piece of America. In frustration, he tries to stop his miserable fate by a series of completely successful suicide attempts, only to wake the next morning—alive—to the same annoying alarm clock in the same pedestrian hotel room. Recognizing the trap, he misbehaves knowing it will have no consequence—he can rob an armored truck and the “next” morning nothing will be amiss. He bumps his way through the day with the same resentment and frustration the congregant had expressed. He punches, and the world punches back. And each day was just as miserable as the cold rainy morning had suggested. It might have taken Phil Connors some time to recognize it, but finally he does start thinking about the fact that he was stuck in this impossible world and that his punching the same way is having the same unwanted effect every time. If he was stuck here, he finally concludes, he might as well make it a little more bearable. So he helps an elderly woman and he makes friends with the town clown and he learns French and how to play the piano. And he wins the girl with whom he had so grossly and awkwardly flirted in the first of his Groundhog Days. He got to do the same day over and over, each day a little better than the last.

The people around him changed, his world changed, but only when he did the hard work of changing or accepting this new reality. But when he did change, their change, their acceptance or warmth or love, made his next improvement not just easier but more likely. But it had to start with him.

I met a lovely, earnest man named Mark Gorman recently. Mark is a metastatic melanoma survivor, and he told me that he carries with him in his wallet a fortune he unwrapped from a fortune cookie some time before:
You cannot change the wind, but you can adjust the sails.
That's what Phil Connor was doing, adjusting his sails, and when he did it, his boat moved in a new direction.

Groundhog Day
is not a story of defeat. How wonderful, really, to live with the opportunity to get right today the mistakes I made yesterday. I can learn from my mistakes (and I will always make mistakes) and try to do better on the next try. I do not have to accept the reality handed to me; I can play a part in changing that reality. Well, within limits. So I keep trying, as Phil Connors did in
Groundhog Day
, to outmaneuver nature, to choose a different reality, or a different angle on the reality I cannot avoid.

My sister Nancy did this, in a smaller way, when she was five years old.

When I was seven years old, my brother was six and my sister was five. We lived in a white apartment building across from the station chapel on the Naval Air Station Jacksonville. My parents were Sunday school teachers, and each Sunday the five of us would walk across the street together. Before we left the apartment, my parents would give us each our allowance for the week. In those days, all the stores were closed on Sunday, so I suppose they were enforcing at least a one-day savings habit. Our allowance and the offering we got for the plate at Sunday school were each a dime. Before concluding that my parents were stingy, you should know that it was 1956, and in those days a dime would buy you a comic book or two candy bars.
Family Circle
magazine had a proud emblem on each cover:
Always 15¢.
It was a different time. (It was a time I think about fondly, when little girls dressed in crinoline and nothing, even the price of a magazine, was supposed to change.)

This particular bright Sunday as we walked to the chapel, my sister took her two dimes in her cupped hands and shook them as we walked, listening to them jingle. But as she stepped from the street to the curb, one of the dimes popped out of her cupped hands, rolled along the sidewalk and down the curb, across a drain grate, and down into the drain. Without a second's hesitation, my five-year-old sister exclaimed, “There goes the Lord's dime.”

She was certain that the dime remaining in her hands was hers. And perhaps it was not too unfair to assume that God had a better chance than she of retrieving the dime at the bottom of the drain. But what she was really doing was creating a reality she wanted. In my case, the reality I wanted was unachievable. So I struggle sometimes to see the silver that I still have left in my hands. Maybe, as so many say, the silver is an appreciation of our own mortality and therefore an increased appreciation of the days we have. It is worth living deliberately to get those days right, like in
Groundhog Day.

This might be mindplay; it probably is, but what are the choices, really? I can live out my remaining days—however many there are—as a victim or I can try to experience them with an intensity that our mortality should have given us every day. I do not want to live as a victim. I even hesitate to write that my condition has worsened in fear that more people will look at me as a victim.

As I sat waiting for an appointment with yet another specialist at UNC Hospital a year ago, there was a woman in the waiting room with me, a woman who had just received a confirmation that she did, in fact, have breast cancer. She sat there, small and frail, a friend who had driven from Greensboro to be with her at her side, but a friend who would have to drive back that afternoon, and as she waited, her shoulders melted into shivering surrender. Tonight she would be alone with appointments to make, dinner to cook, and a job to go to in the morning. And she didn't look like she could even stand up on her own.