Resilience (11 page)

At first it was not cancer itself to which I adjusted but the idea of cancer. The disease was inside
me, but except for that plum, there would be no reason to suspect it was there based on how I felt or how I looked. Even when I started to look like a cancer patient in external ways and to feel in internal ways like I was sick, it was, honestly, the medicine I was taking to stop the cancer, not the plum-sized tumor itself, that was responsible. If the pharmacist who was preparing my chemotherapy infusion happened to drop a bag of my medicine on the floor, he would wear protective gear to clean it up; it was sufficiently toxic to require that degree of precaution. And yet we pumped it directly into my veins for several hours every two weeks. It was no wonder I was feeling lousy.

In those months, that first year when the chief nurse Ann was greeting me at the hospital door, when Dr. Warren was measuring the shrinking tumor, when my infusion nurse Mercedes was making that dreadful medicine seem tolerable, I never believed I would die from this disease. I certainly did not want breast cancer, but as diseases go breast cancer—when contained in my breast—was unlikely to kill me. This would be an obstacle in my story, an obstacle that would be hard to hurdle but one that would not change my course. Even if it was
not easy, I could do it, knowing I would not have to accept a whole new life again. And when I had breast cancer in 2004 and 2005, it was just plain physically hard. It does not matter whether it was the idea of the disease or the reality of the medicine that made those months hard. My joints ached, every one of them. Depending on when it was in my chemotherapy cycle, I wouldn't want anything to eat or I would stand in front of the refrigerator famished. I would tire in a morning of meetings. My eyesight worsened. I felt empty-headed; I would look for a word and I could not find it; I would start a sentence and forget where I was headed. All of these limitations were good only for my younger children, then four and six, because child's play was the easiest activity to handle. I could play Chutes and Ladders for hours … as long as I was prone. I could read the large print of children's books. And when I was not sleeping or playing with the children, when I was not trying to write thank-you notes to well-wishers or attending a meeting about what came next for us, it was mostly sports on television. After two years of campaigning that kept me from watching sports, it was now ESPN all the time. I missed the 2004 Olympics, but it was the
NFL playoffs and then the college bowl games and, taking me through the end of chemotherapy and recovery from my surgery, it was college basketball and spring baseball in the majors.

So I watched television and read aloud to the children and read an astounding 65,000 e-mails that were sent to me. In the months that followed, I would also read 30,000 pieces of regular mail, some on homemade cards, some with gifts included. It might seem, given the numbers, that I would tire of reading them, but I did not. Each was a personal gift, packaged in a way that reflected the giver, letting me imagine them placing a cap they had knitted into a box or letting the youngest child in the family who had signed a card reach up to the post box to mail their card. For years John and I have played a game with the children in the car. When it is your turn, you choose a house you are passing and you make up a story about the people in the house. A well-kept garden or dead flowers in a window box; clothes hanging on the line; children's toys in the yard; an empty horse-trailer; all the details of life that give us clues about the people for whom that is home. You have to notice as many details as possible in the time it takes to pass the house. You then
make up an elaborate story about the house and its inhabitants, filling in the spaces between the details with which you have been provided. A house with a newly constructed ramp was a soldier returning from battle; the now-untended vegetable garden the result of his wife's caring for him instead of it. I was doing that for the cards, e-mails, and gifts and their senders. It made it seem more like they were people I knew than the strangers almost every one of them really was. Sometimes on the cards or letters they would give me an outline to fill in; they would tell me about themselves: They had had breast cancer, they were a Republican, they had lost a child, their father had been in the military too. For quite a while, I was never lonely. My living room was filled with good-hearted strangers.

Ensconced on the couch with prayer quilts they had sent tucked around me and my latest favorite knit cap over my head, I wondered how other women, less comforted, made it through these painful months. Well, for most, of course, the months were not as empty as mine. Many had to go back to work, achy and tired or not. I was lucky—I did not. Single mothers might not be able to rely on their children's father to take care of the children; I was
lucky—after the election John was able to devote himself to me and the children. A stranger who had read of another woman's cancer was not sending them a prayer quilt or a get-well card. I was lucky—someone somewhere was thinking of me, praying for me. I sat reading their letters for hours, placing them back into boxes where they are still stored in my house. But I was lucky, too, in a frivolous way—how you simply spend these hours: I had young, resilient children, I had a husband who included me in his work, and I liked sports. So my days were filled with Chutes and Ladders and David Shannon's children's books, with meetings about what John was going to do now that the election was over (it turned out he started a poverty center in North Carolina), with my preliminary drawings of the house we would build when we returned home after my treatment, and with sports on television. Part of my recovery from this debilitating treatment was that I was busy in a fashion and I was not alone. But I cannot overestimate the importance of my belief that I would not die of this disease.

So many times between November 2004 and now I have sat in a hospital room, waiting for the doctor to come in and tell me what the latest scans
tell her and what changes there have been in the previous three months. There are some of these potentially life-changing conversations, frankly, that melt together: the same doctor, the same room, the same report—no appreciable change, which meant I would not die of breast cancer. But the ones when the report is not the same? Those I never forget; they never melt into another day or into another season. Those I remember what I was wearing, the weather, the words the doctor used, where John and Cate sat. From that first tiny hospital room, crisp and spartan and white at Massachusetts General, where we first heard the word “cancer” spoken aloud to the basement room with a bed and a sink where John and I sat for hours waiting for the results of the bone scan and the CT, to the latest room in Chapel Hill in the old Gravely Building that has stood there since I was in college, where we heard that it was no longer contained and had spread to a couple of new places, the quiet life-changing moments grow to an imposing size.

There was a time, in 2005, when I was being treated for Stage 2 breast cancer and the news was almost always good. Doctors looking at ultrasound machines and smiling, a happy nurse handing me
the gown into which I would change before the doctor came in, and finally the wave good-bye—the cancer was gone. Boy, it sounds so simple when months of basically happy reports fall over one another like that. Of course, the road to the smiles was more than bumpy. Like a Conestoga wagon crossing the far West, the whole of me shook for the entire ride—but now and again there was a beautiful sunset ahead that made it seem worth it and we were headed to good health again. The vision wasn't on the horizon, however; it was in a scan result or on an ultrasound screen or in the clean margins after the surgery. All beautiful, reassuring. I had determined not to let fear in, and it was easier when the reports all confirmed that I should not be afraid. But the reports only looked at my body that day; they could not see tomorrow.

My grandmothers each died in their nineties. I knew one of my great-grandmothers, who must have been nearly a hundred when she died. Until 2004, I believed I might live longer than all of them. I had been hospitalized to have children, but that was all. I took no medicines, prescription or otherwise. I was always dieting, but my blood pressure and my cholesterol were both low. Living to ninety-five
seemed entirely possible. I had had children late in life, Emma Claire when I was forty-eight and Jack when I was fifty, so living a long life would mean that I would see them marry and I would live to hold their children. And now, suddenly, seeing even my oldest daughter, Cate, marry seems in jeopardy. In a moment—a “you have cancer” moment—all the genetic aces folded. I was—am—desperately afraid of losing the precious moments of life.

There were times even in those relatively optimistic early days, though, when I felt alone. There is part of this disease that belongs only to me. I never felt comfortable sharing the moments when logic left and the pain of the treatment magnified the risk of dying, when fear did come in. What could the people who love me do, anyway, I figured. It would only make them feel lousy that they could not honestly say anything that would change the reality I was facing. This is the catch-22: We protect them when they want and need to protect us, when they know we want and need protection. With each side protecting the other, neither of us gets what we want or need. But I always figured it was impossible to get what we needed. I had the disease, they could not change that. All I could do was guess what their
reaction would be to my expression of my fears—impotence, I guessed—and what was the point of that? I kept from them my greatest fears precisely because they would respond with protestations that this was about tending to me, not about tending to them. And they, though they might keep a stiff upper lip with me, would, I discovered later, fall apart alone in fear and grief. They could not ask me to carry them through this. In our way of being gentle with each other, we never really see it from each other's perspective. I had to decide what I should share. My conclusion? I have shared very little. Maybe not talking about the fear was better anyway, not allowing it to own any more of me than it already did. And if it is not better, well, fortunately, we have more days to get it right.

In 2005, it seemed as if the cancer had been chased away. Maybe I had been right to deny fear a place in my life. Cancer was already scarring my body, taking my hair and my strength, taking a year of my life. I was right, I thought, not to hand it any more than it took by force. I still think that was right. But I was wrong and arrogant to think that I had somehow beaten back the disease.

In 2007, it was back. Spring was teasing us in Chapel Hill: The days were warm and bright, but by sunset winter reminded us that it was not quite done with us. And then it all seemed not to matter, except to think that the weather was mocking us. The cancer was back. Well, I suppose the doctors would say that it had never really gone. I thought I had chased it away with chemotherapy, with a surgery that left my breast disfigured, and with a month and a half of daily radiation two years before. But I had only chased away the big pieces; the smallest of pieces had stayed, hidden from scans, too small for imaging; they had stayed and then grown. And now here it was again, now grown, now in its new home. No longer in my breast, it had spread to my bones, maybe my lungs, maybe my liver. And it wasn't leaving. Not ever. In that moment, when I found out for certain that I would have cancer in me every single day until the one day it finally took my life, all the reasons to live and the reasons to die, the way to live if I could, all danced before me, twirling, enticing, until I chose a partner from among them. Live. Die. Fight. Curl up. Look for a hug. Give a hug. Cry. Cry. Cry.

Could there be a reason to die? “No” is the obvious answer, and it would be easy for me to say the conventional no, there is no reason to die. But if you had lost a child—as I had two weeks short of eleven years before I sat in that hospital room waiting for the results of the bone scans—you might see it a different way. Death looks different to someone who has placed a child in the ground. It is not as frightening. In fact, it is in some way buried deep within you almost a relief. The splendid author Mark Helprin wrote, in the introduction to
Almost Spring
by Gordon Livingston, “If you were on a ship battered by immense waves (and, believe me, you are) that swept your child from your arms would you not (given that you had no others for whom to remain) throw yourself into the deep, hoping for the chance that in the vast black ocean you might grab onto him? Comforted just to know that you would suffer the same fate? And if you had to remain, to protect others, would you not dream all your life of the day when, your responsibilities over, you would finally get to the sea?” It is not a death wish. It is an appreciation that there might be in death some relief that life itself could never offer.

But I did not want to dance with death.

What were the reasons to live? They lived and breathed before me. My children, the “others for whom to remain,” certainly. I had buried Wade, but his sister Cate had just turned twenty-five, and, as strong as she was, I did not want her to test whether she was strong enough to lose any more of her family. Did Emma Claire, brilliant and fragile and kind, have the tools at eight years old to deal with cancer that I would surely have to tell her could take my life? And Jack, still six and precious and charmed—how hard would I have to make the news to break through his steadfast optimism? And Wade's death had reminded me what a gift life is, not to be taken for granted on a single day. I thought of the people who had written me in 2004—and many were writing again—who had said that you are alive today and that is a victory. The only answer was to live, as long and as well as I could. I determined, as I thought of them—and I recommit every time I look at them—to live long enough to die of something other than cancer. There is, I know, a continued arrogance in that.

My husband of almost thirty years sat next to me in a tiny basement examination room at the hospital as we got the news that the cancer had
metastasized. The last three months had been hard. I had come to know his imperfections, and my sense of what our marriage meant, of who I was, of what was to happen to us and all we had done together, had been roiling in my head every minute of every day since. But here on this day, calm set in. John had been campaigning in Iowa as a candidate for the Democratic nomination for president, and, of course, he had come home for my tests, come home to the somber words of the doctor, come home to my frightened voice. It wasn't just that he was there—how could he not be?—it was the look of fear on his face. It was clear that through all that had happened, he never thought he would lose me. He counted, as I did, on the seemingly immutable fact that we had a profound and deep relationship that had withstood worse—the death of Wade—and that after that we had stood together and slept together and worked together.