Resilience (12 page)

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
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-encompassing 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 prone 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.
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.