If you are able, like Job, to place yourself firmly in the hands of your G.o.d, you have, in my view, a greater gift than resilience. You do not have to come to terms with a new reality of a child in a grave or with a disease silently ravaging your body. This is not a new reality; this is what your G.o.d has ordained for you, handing you the suffering in one hand and the faith with which to come to terms with it in the other. Some who are not fully satisfied with G.o.d"s arms or G.o.d"s answers looked elsewhere. I will not judge them, for what they got is what they needed. I wanted a G.o.d, but I needed a different understanding of my G.o.d than the one in which I had believed before the wind swept Wade from the road.
I listened as there were discussions of mysticism and after-death communications and other places I was not willing to go. I would not then and do not now condemn that search. What do we know, really? We are all on a journey to understanding, and we cannot know the end or scope of it, and even in the most mundane ways, we can hardly come close. I was-and still am-completely amazed by telephones: that I might dial a set of digits here in North Carolina, and my sister might answer the telephone more than a thousand miles away in Florida, and that I speak and she recognizes my voice. What happened to my voice? It must have been taken apart and sent in waves to the sky and back to someplace on earth where it knew it was meant for her and was sent only to her, and the voice that was waves was put back together and became again a voice, incredibly, that she could recognize. And what is more, we can talk, even talk right over one another, so it seems all the taking apart and sending and putting back together happens at once. I remember talking to my father overseas one time when I was a girl. His voice was almost his voice, but it would crackle and fall apart, and there would be pauses, the last words echoing while I waited my turn to speak back. I know that the old almost-voices and the new perfect-voices are only physics, but it is a wonder. A wonder that seemed like a trick, then seemed imperfect, and then became what we know and accept: That is my sister"s voice, and this is mine. What other rough edges and crackles will we smooth so that what seems a difficult or impossible communication-even communication across the barrier of life-is clear, is commonplace? About much more important things, I am not vain enough to think I know at all. You do not have to believe in order to believe that you do not know.
We came to understand doubt expressed rawly or expressed in searches for answers elsewhere as but a search for meaning, rea.s.surance, hope. We came to understand that religious vehicles that had for millennia encapsulated our spiritual expectations may, nonetheless, be insufficient for some to explain the terrible briefness of the life of one child. We tried to make life and death, and hope, as much a part of our beings as the air we breathed at their graves, and until we managed that, the plat.i.tudes and parables of others were meaningless. So we read, and we prayed, and, frankly, many of us wandered. And wondered. I still wonder what it was I was looking forward to. I wanted to embrace the image of some eternity, but I could not quite make it form. What was the heaven for which I pined? There, if I longed to touch him, would I feel his cheek? Or would I simply be freed of my longing to feel his cheek?
As I have felt further, less devastating blows in the years after Wade"s death, I cannot understand how I merited these blows. What did I do? Even though I think I know better, I still continue to ask and I continue to wonder. And then I remind myself: This is the world we made; its flaws are our flaws; its shortcomings are our shortcomings; and the degree to which there is injustice or unprovoked suffering is just a reflection of our failures. But because, in order to reach this point, I have to accept a G.o.d who does not intervene, I have to accept that I cannot expect intervention now. I do not pray for my health. G.o.d gave me this world, and He gave me free will. It is my world, and now, if I am able, I have to fix it.
CHAPTER 7.
2007.
-nother city, another town hall, another morning shower. The moments that will change our lives are often not in the monumental events writ large on our calendars. My husband was running for vice president of the United States, and certainly the next monumental moment in our lives would be on November 3, 2004, election day. But sometimes the critical moments are hidden in an ordinary day. My life changed on October 21 as I showered. Standing in a hotel bathroom in Kenosha, Wisconsin, I felt a lump, fat and smooth, like a slice of plum midway between my armpit and nipple. I convinced myself that it was just a cyst. Allowing myself to think that it could be a cyst allowed me to dress that day, to lead the town hall, and then to campaign for another week before a mammogram and ultrasound took away such foolish illusions. Maybe not so foolish: No women in my family had had breast cancer save my father"s sister. On my mother"s side, the side important for breast cancer, I thought, there was nothing. And this was, I believed, nothing but a cyst. Since it was the size of a generous slice of plum, though, I would have it checked when I could. But it was eleven days before election day, and I had a full schedule. I couldn"t get it checked for a few days without canceling events and alerting the press. And I couldn"t tell the press because they would say the threat of cancer was a play for sympathy, and I didn"t tell John because these days leading up to the election might be the most life-changing days of his life, and my plum shouldn"t be on his mind unless it needed to be. So far, it was just a cyst-plum, and it didn"t need to be.
A week later, after a secret mammogram and biopsy while I was home in Raleigh to vote early, it was clear it was not just a cyst. Watching the radiologist read the ultrasound monitor, I knew it could not be something benign like a cyst. The plum was likely to be cancer, and I had to tell John. He jumped into action. He arranged for a biopsy in Boston the day after the election, and we barreled through the final days of the campaign as if that sword were not dangling over our heads. In truth, the campaign gave us each a respite from letting ourselves go where we knew we would likely have to go after the biopsy the next week: The test was likely to confirm I had cancer, we were certain. And a week later, the day after the 2004 presidential election that did not alter John"s life (or mine) in any significant way, we drove from somber words of the concession speeches at Faneuil Hall in Boston to Ma.s.sachusetts General Hospital and the somber words we knew were coming.
I cannot tell you whether knowing the words "you have cancer" are coming makes it easier, since I did not get to do it two ways. I did it one way, and although that was bad enough, I suspect that it was easier getting used to the idea of cancer over a period of a couple of weeks, getting a chance to tell my family in little pieces rather than having to hear it one day and having everyone sitting at my knees in tears all at once after that. So my husband, my oldest daughter and I stood erect and took with resignation the words: You have cancer. You have cancer. It had been a life-changing day after all. We would have to adjust our lives to the disease. It had been a life-changing day after all. We would have to adjust our lives to the disease.
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 p.r.o.ne. 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 pa.s.sing 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 pa.s.s the house. You then make up an elaborate story about the house and its inhabitants, filling in the s.p.a.ces 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 Ma.s.sachusetts General, where we first heard the word "cancer" spoken aloud to the bas.e.m.e.nt 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 b.u.mpy. 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, rea.s.suring. 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 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. 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 bas.e.m.e.nt 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.
His face now told me that he had never entertained the idea that I would not be a part of his life, even the center of his life, no matter what. He now knew to a certainty that I would die and he would live on without me and he was afraid. It was not yet clear whether I could forgive his transgression or whether I would continue to stand beside him, but that did not matter. None of that had anything to do with our prospects now as we sat in the hospital. What was clear was that I would not stand with him in all that life would send his way because cancer would take me at some point and he would be alone. The constancy of the love that had kept us together, had kept me with him, had been sorely tested, but now it was not what I would do faced with his indiscretion that mattered. Cancer was writing the script now. Cancer would decide. And, realizing this, he broke down with fear and love and regret. And once again I was the woman who had chosen him thirty years before and built a life and family with him. We were lovers, life companions, crusaders, side by side, for a vision of what the country could be, and we were an old married couple. At least for a while.
And that part about crusading together, it was the glue. Whatever might be ripping at our lives together, the cancer was stronger, but maybe the crusade was stronger too. And with the strength of these battles in which we were so clearly united, we would regain our strength. I grabbed hold of it. I needed to. I needed him to stand with me, and although I no longer knew what I could trust between the two of us, I knew I could trust in our work together. This was the life I had before the doctor"s grim diagnosis. Is it so hard to understand that I so desperately wanted that life back, back before all the words and acts that might have separated us? I could not simply retreat to my home with nothing but death in my future. It might be hard to understand, but I had done nothing wrong at all, and yet my life, so carefully constructed, so carefully tended to, was being eaten away. What did I have to do to rescue it, to mend it back to how I wanted it to be? I got some hints as we waited.
The words of the nurse who was putting in an IV line about John"s dedication to health care, the holding-my-breath looks of the others who were awaiting scan results and the smiles they broke into as John pushed my wheelchair by them, the memories of tested but hopeful faces I had seen for the last five years as I crossed the country, I grabbed on to all of them. I could do this. I would do this. I found a dance partner, one that allowed me to dance with a husband who had disappointed me and one that allowed me to dance for my children-a dance of an intact family fighting for causes more important than any one of us. It had been part of our wedding vows thirty years earlier in a country church not two miles from our home today-to work for a more just world-and John asked if we could renew those vows that summer when we had our thirtieth anniversary. I could do this. I would show my dear children that I was alive and that it really only matters how we handle our worst moments, and see what Mother is doing? See how Daddy is helping?
In the next hours, we sat with our closest staff-all friends for years, soldiers in the same war-and we told them, their eyes filled with tears, that the cancer had metastasized but we would continue to campaign. John"s indiscretion seemed a million miles away; I cannot say I even thought of it. I thought only of the bright spots on the bone scan, in my hip and on my ribs, and of my doctor"s conclusion that it was not good but also not dire. We hugged everyone and smiled and planned for tomorrow.
And writing this, it seems so simple. All the fear seems to be but a setting for some larger battles yet to be waged. And yet in the moment, the pain and the fear were real, overshadowing, dark, and I had to find a partner bigger and stronger and more important than my own cancer. I was lucky, for I had been dancing with that partner for years.
We chose to announce the metastasized cancer publicly-although I did not know with any real certainty what my prognosis was-and to continue with my husband"s political campaign-although I did not know the prognosis for the campaign, either. I only knew that both were alive that day and that all I could do was to make today count. I did the only thing I knew to do: I pressed on with what still seemed important to me. It probably doesn"t matter so much what those things are. What mattered, in order to put one foot in front of another, was that there was some reason to do that, some reason to get up and shower, some reason to make what remained of my hair look reasonable, some reason to, well, live even though the hand life had dealt looked increasingly bleak, increasingly lonely.
I am guessing that I am not the only cancer patient who does not talk about fear. Or who doesn"t know what to do with talk of anything more than a year away. Does it matter where the Olympics are held in eight years? Maybe not for me. So when there is such talk, my mind immediately wanders: How long will I have been dead by then? And just as quickly I push such thoughts away. Part of resisting the disease is captured in simply not letting the fear of tomorrow control the quality of today. The Rodgers and Hammerstein song from The King and I The King and I makes the point better than I can: I whistle a happy tune, and every single time, the happiness in the tune convinces me that I"m not afraid. Powering through the fear may seem like denial, but fear doesn"t change the prognosis. It only changes the way I would feel between now and whenever the inevitable occurs. So that is what I did. And it worked, at least at first. makes the point better than I can: I whistle a happy tune, and every single time, the happiness in the tune convinces me that I"m not afraid. Powering through the fear may seem like denial, but fear doesn"t change the prognosis. It only changes the way I would feel between now and whenever the inevitable occurs. So that is what I did. And it worked, at least at first.
When I watched my father die in 2008, I looked at a body too weak to fight any longer, his skin smooth and milky and thin, his eyes with a film over them separating his world from ours. "You can go if you want," I told him when we were alone before the others gathered, "but if you can, wait for everyone to get here. Then you can choose." And he did hold on, he held to the tiniest thread of life until his family gathered in yet another hospital room and until each of us said what we needed to say, until we all laughed about his years of foolishness and cried about his years of foolishness, until we sang to him and read to him and held his hand. Until we knew it was time to stop. The nurses turned off the machines that warned us how close he was to death, and we waited together quietly, reverently, until the green line on the one remaining muted monitor went silently fat. His sister didn"t know when it happened, my mother no longer understood even that he had died. But he did know; someplace in him he knew, and I can almost imagine the wink he would have given if he could as he slipped out the door, leaving the rest of us, the living, alone.
And that is as good as it gets.
Like the rest of us-for we are all dying-I am dying. I haven"t any idea how long it will take for the cancer now metastasized at least to my bones to strangle life from me; I haven"t any notion of whether the medicine I take today will stave it off for another month or another year, and I do not know what comes next when this medicine starts losing its battle with the cancer cells.
And it teases me-or I tease myself with the fear of it. I was traveling in 2007 when I felt a rough spot on the back of my neck. No matter how I turned the single hotel mirror, it would not reveal the mark I was feeling. When I came home, I checked. It was long and brownish and rough. Had the cancer metastasized to the skin? Was that even possible? I did what I promised myself I would never do: I googled "skin cancer" and sat at my computer with two mirrors and a screen full of images. As I compared them, Cate walked in. She looked at the screen and in a cautious tone she asked, "What are you doing, Mom?" I tried to sound nonchalant: "Oh, I felt this rough spot on my neck," flicking my hand over the spot in as carefree a way as I could manage. "Just checking on what it might be." She looked at the images on the screen, and she looked at the place on my neck. Then, turning to leave, she said with real nonchalance, "I don"t know what skin cancer looks like, but I do know what a curling iron burn looks like." Two nights of going to sleep rubbing the place on my neck, measuring the feel of it, and it was a curling iron burn. Death averted, or just stupid fear? Stupid, mind-numbing, all-encompa.s.sing fear.
Sometimes the fear is justified. As I was writing this book, through the fall of 2008, I felt a pain in my back. It would come and go, but I am p.r.o.ne to move things that are too heavy or to lift a child I should not, and I let myself believe that was all there was to it. Just as I had done when I found the plum that must be a cyst in my breast three years earlier. When I go every two weeks to the hospital for my chemotherapy infusion, I see Jerome. He is gentle and patient, a beekeeper by avocation, which seems perfect to me somehow-coming close to what could hurt him but never getting hurt because of that gentility. Jerome would ask me as he took my blood pressure and prepared my biweekly IV infusion whether I had any new pains. "Some back pain," I would answer, and he would write it down. Jerome would tell Dr. Carey, and Dr. Carey would tell me if it required any special attention, so I could forget about it. Until the next pain. But as Christmas approached, the pain became more frequent, and I could pinpoint where on a rib in my back it was centered. Again I did what I no longer bother telling myself not to do: I googled "bone cancer and symptoms." The intermittent pain was there on the list of symptoms, in words I might have written to describe my pain. We moved up the scheduled MRI.
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. 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. 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 a.r.s.enal? Where is the a.r.s.enal? I wanted to know. At the first sign of the metastasis in 2007, we were told there would be an a.r.s.enal-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 a.r.s.enal. One and then the next. But I was simply going back to what I had taken before. I had depended on that a.r.s.enal.
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 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 ba.n.a.lity 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. 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 b.u.mps 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. 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 b.u.mps 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. 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. 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 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 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 Family Circle magazine had a proud emblem on each cover: magazine had a proud emblem on each cover: Always 15. 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.) 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 a.s.sume that G.o.d 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. 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.
I had seen that look before, of course, in hairless women who were navigating the hallways at Georgetown, where I got my first chemotherapy-a hospital, like many, that seems to be in a perpetual state of renovation. Confounded by the absence of a once-familiar hallway, she had a look that admitted defeat. Beaten by cancer and by "progress."
Now, I don"t think you can will your way to good health. To say that is to suggest that those who died didn"t have will enough, that this cancer spread in me because I let it, and I know that is not true. But I do believe that none of us knows how many days we have, and it is a shame that any of our spirits capitulate to this disease-or any other-for even a day of the ones we have left.
But I have to acknowledge that one thing is clear: Every decision I make is colored by the fact that I know only that I will die before I thought I might, that each day has a number I cannot yet read. So when I decided to continue working in John"s campaign after my rediagnosis, I was holding on to the life I wanted, even if the life I had was clearly less than what I wanted it to be. I adjusted my sails, but as little as possible.
There is a personal dignity that comes with resisting the word "victim" and all that it means. Resisting by living each day and doing it well, even if, like Phil Connors, some of those days are still imperfect. I see it in the faces of women everywhere, some strong and healthy, some pale and hairless, who have a power in them. Was Donna in Minneapolis this determined before the cancer? Would Sharon in Atlanta have approached me before we had this bond? Not only had their spirits not capitulated, they had risen as they took each day into their own hands, made each day all it might be. Like Phil Connors, and like me, they probably hadn"t done it the first day, but we all learned that how we adjusted made a difference in the life we had left.
There is just so much I can do to fight the disease in me. I know that. It frustrates me, it makes me afraid. I want control over it, and I have no hope of that. So I treat it as an asymmetrical war: I attack from another flank. I spend my time fighting for the health of women who have my disease but do not have the benefits of the great health care I get. I fight for more research to cure cancer.
I was in Cleveland to give a speech shortly after my rediagnosis in March of 2007. It was a lovely large room at the Cleveland City Club, the kind of stately room we don"t build anymore in a magnificent old downtown building. After the luncheon speech some of the audience, which was mostly women, lined up to meet me or to have me sign a book or the program. There was a woman who had had breast cancer and her lovely daughter, a political supporter of my husband"s, a scarved woman in the middle of chemotherapy. The thought of one woman in particular has stayed with me. She was wearing an ivory suit and stockings, so I a.s.sumed that she was working downtown. (I always a.s.sume that someone wearing stockings is working; why else would they wear them?) She leaned over and whispered in my ear.
"My name is Sheila," she said, "and I am afraid for my children. I have a lump in my breast, but I cannot get it checked. I have no insurance."
"Stay right here," I said. I called to Jennifer Palmieri, who was traveling with me, and we tried, right then, to get her connected with someone who could get her the help she needed, but by the time we found someone, Sheila had left. I a.s.sumed that her lunch hour was over and that she had gone back to work. At one level, this is a depressing story: a working woman with children who cannot get the health care she needs in a country of such abundance. But at another level, hers is a story of hope: She believed that we live in a country where things can change if we just whisper in the right person"s ear.
She whispered in my ear. I am not the right person who can change things. But I am not the wrong person, either. It is like my sister"s dime. She could want the dime for herself partly because she was five, but also because she couldn"t understand that her dime in the offering plate was going to join other dimes and buy dinner for a hungry family or a jacket for a cold child. I certainly could have felt the same impotence in speaking out against a health care system that denied that working mother the care she needed that I feel fighting against the disease within me. And by thinking of myself as a single voice, I would give myself a perfectly reasonable excuse to do nothing. Or I could choose to see what I do as a small part of a collective effort that might change things. I remember protesting the war in Vietnam. Certainly my individual voice meant nothing, but the power was in the chorus of voices that might in time contribute to the end of that war. And I was in a war now.
Sheila gave me a great gift when she whispered in my ear. She reminded me that whether I had cancer or not, whether I lived five years or fifteen, my voice might be part of a chorus that could make a difference. I spoke about health care before meeting Sheila, but after she spoke to me, I recommitted myself to fixing a system that does not work for too many of us. I was luckier than I can say to have the opportunity to speak out. I am not the most talented of speakers, I don"t know nearly as much as the experts know, but I have somehow found myself at a place where notoriety and disease open doors for me, hand me a microphone. I don"t look away from any opportunity now. And with each short straw I draw, like the latest diagnosis, I recommit myself again. I may not have enough time for all I hope to do, but I do not have to accept my impotence against this disease.
Of course, every pain, every b.u.mp is a reminder of who will ultimately win the war, even if I win all the battles before that day. My job now is to stay alive until the doctors and researchers out there working find a cure. Using the days I have left as well as I can, hanging on to each day, another Groundhog Day, hoping that one day those doctors and scientists will get it right and I will have enough time to get it right myself.
Until then, I live with cancer, adjust my sails, and remain inspired by the power of Sheila"s whisper. I choose life.
CHAPTER 8.
2008.
-he house was crowded this Christmas with family and school friends. Someone moved the Christmas CDs, apparently a well-intentioned attempt to clean up, but they chose as their first target the pile of Christmas CDs we had pulled out to play while tr.i.m.m.i.n.g the tree. No one confesses, but even if they had, it would be no use; we can no longer get to the cabinet where the CD player is housed. My sister Nancy has come for Christmas, as she usually does, and has brought with her a dozen lovely framed pieces of art she has created. Displaying them in our family room away from the couches and the children, she chooses the protected location in front of the cabinet, but in front the cabinet that holds the CD player and the radio receiver. Christmas music seems out of reach today, the one day we really want it, while we decorate the Christmas tree. Modern life to the rescue: There is now Christmas music on a cable television music station. So we turn the televisions to the appropriate music channel, grab our baskets, and fill them with the ornaments I have unwrapped and piled high on the kitchen table. And singing along to the Christmas songs that really are Christmas songs (I don"t use the word "Xmas," but some of the songs seem more like generic-brand unfamiliar Xmas songs than Christmas songs and we do not sing to those), we decorate the tree. Cate is home from school, her last school vacation before she enters the work world without three weeks off at Christmas. Two of her friends, Marlo and Chris, are pa.s.sing through and spending the night before heading north. Cate, Nancy, Marlo, Chris, and I are tr.i.m.m.i.n.g the big tree, and Emma Claire and Jack have corralled their father into helping them decorate the tree in the playroom. And my mother sits in a chair by the tree in the living room. In photographs it would look like the picture of a happy family, with the imperfections-like the Xmas songs-unable to be heard. And there were imperfections.
My mother lives in an a.s.sisted-living center near me, but she is at my house for the tree tr.i.m.m.i.n.g, although I don"t know that she even knows that. Now frail and sunken into herself, physically and mentally, she sits in the chair nearest the tree, periodically sleeping. When she awakens, she invariably points out something that disturbs her. An ornament she thinks is out of place, a person she doesn"t recognize. My mother was once one of the most ferociously intelligent women I knew, and later that intelligence was a mask for many years of a departing mental acuity. Now no mask is opaque enough to hide the truth: The woman who was once my mother, like the six-year-old boy who was once my son, is gone, replaced by another person I love, but-in the case of my mother-one I do not always recognize and who does not always recognize me.
One by one, we each go over to her and tell her something about what is happening. Do you see the plastic stars over some of the lights, I asked. You and Dad helped put those on last year. With respect to my mother"s contribution last year, this would be a generous description; with respect to my father"s, an outright lie. Dad had almost no fine motor skills left in December of 2007. And this is the first Christmas since he died. She doesn"t argue; she simply mumbles something unintelligible. I touch her hand and return to the tree. My mother has never recovered from my father"s death. He gave her great joy and great pain when he was alive, but now all she feels is the pain of his absence. So tremendous is the pain of the thought that he has died that sometimes she just rejects that truth: Sometimes she decides that he is simply somewhere else, maybe lost; maybe by choice because he doesn"t want to be with her, a thought that breaks my heart; maybe he is just on his way here. Has Vince gotten here yet, she will ask. The experts say to let it go, and most of my family does that. When my sister tried to remind her of Dad"s peaceful death, of his lovely funeral in Annapolis, of his interment across Weems Creek from the United States Naval Academy parade ground on which we used to live-in sight of our old house, in fact-Mother just got angry: Have it your way Have it your way, she snapped. Nancy doesn"t argue with her anymore. If Mother needs to believe that Dad is alive, is on his way, had lunch with her yesterday, Nancy lets her go where her mind seems most at peace.
I have never been as easy to get along with as Nancy. And I have an advantage, if the death of a child can ever be so described, because I can talk to my mother in a way no one else really can. When Mother insists that Dad is still alive, that he was with her last night or that she doesn"t know why he doesn"t want to be with her anymore, I disagree with her. I know, I tell her, how easy it would be to think that he isn"t really dead. I have been there, and I know what you are feeling, but in the end, Mother, all our wishing doesn"t change anything. And from me, she takes it, she doesn"t snap back. Somewhere inside her she understands that we have lost Wade, and she doesn"t argue with me.
So when I have been talking to my mother and she looks sad, I sometimes think it is because with me she knows she cannot act in the play where my father is somewhere off stage. With me, he is dead. So as she watched me decorate, I thought that she looked sad because she knew I wouldn"t play along with the willing suspension of belief. I sat my basket beside her and kneeled on the floor.
"Mother, you seem sad."
"I am." She didn"t look over at me. Her eyes have become so deep set that they are little puddles with pencil drawings of eyes reflected deep in the bottom of them. She was looking somewhere past the tree, out the window and past the meadow behind the house.
"What is making you sad?" Imprudently maybe, I opened the door, but I was surprised to find what was behind it.
"It started thirty or forty years ago." Forty years ago, I thought. I started to calculate my own age. I would have been nineteen or twenty-nine. Nothing happened then that would have made her sad. What could it have been? And then I figured she hadn"t any way of choosing thirty or forty years over choosing fifty or sixty.
"What was it?" I asked.
She fingered the corners of her mouth, speaking while she contorted her lips. I hope I understood her, for maybe it was one of the last lucid things she might ever say. Or maybe I hope I didn"t understand her because it was hard to think these were her last clear thoughts. "I learned my hopes for how my life was going to turn out were not going to be."
I waited a few moments. She didn"t say any more. "What does that mean, Mother?"
"The trust was supposed to be deep," she said. "The smiles were supposed to last forever."
We are not so different from one another. The hopes we have may have different backdrops, different