Saving Graces (39 page)

I knew that I would lose my hair. In my battle against victimization, I cut it off before it fell out. Kevin, who cut my hair and later went shopping for wigs with me, came over and shaved my head the week before my hair was supposed to fall out. Jack and John volunteered to let Kevin cut theirs off, too, but I convinced them it wouldn’t help me to see more bald people in my family. I felt they were a part of this fight without going through this sweet gesture of solidarity.

The loss of hair appeared to be the only part of cancer and cancer treatments that interested the younger children. When I first cut my hair off, I let them watch and then rub their hands on the little fuzz that Kevin had left. They were expecting my bald head, actually anticipating it with eagerness because I had sat them down weeks earlier and talked about my cancer before the news of it was released to the press.

“Mommy has a bump,” I said. “And that bump is called cancer. Cancer is very bad, but I will get rid of the bump and the cancer by taking really strong medicine.”

They looked bored. Somber, but bored. Or maybe just bored.

“And that medicine is so strong that it will make my hair fall out.”

I think it cheered them up. “Your hair’s gonna fall out? All of it? When? Can I see?”

The children never acted scared, and we never talked about the fact that some people die of cancer. When, on the news, they were announcing somebody’s death from cancer, as when Peter Jennings died or when Dana Reeve lost her fight, we’d switch the channel immediately. Cancer can still kill me, but there’s no reason for them to spend their days—or nights—thinking that it will.

I thought—wrongly it turned out—that we had painted a rosy, even funny picture of the upcoming fight with cancer. But they were knocked more off balance by my primary-school rendition of my disease than I had suspected, particularly Emma Claire, who was six years old. It would show up in a letter she would write or in the answer to a teacher’s question. There her Christmas wish would be for me to be better, for cancer not to hurt me anymore. But with me, she was always stoic. If we all acted strong with one another, it was easier for each of us to actually be strong. So we did. Even Emma Claire, at age six.

Our trips to the hospital for chemotherapy would start before nine in the morning with bloodwork. Though I was in a major hospital, it was like the scene from a low-budget film, some actors playing multiple parts. The fellow taking my paperwork at the reception desk, Desi Ravonimanantsoa, would clock me in, wait a few minutes, stand up and call my name, and then walk me back to the blood-drawing room, where he would put on gloves and, now the technician and no longer the receptionist, take my blood. There were regulars, too, patients on the same schedule I was on. Each visit, Anne O’Connor would ask whether I had seen my boyfriend that day. My “boyfriend” was a large man about twenty years older than I who would give me a chocolate candy out of his Captain Kangaroo pockets each time I saw him in the blood-drawing room. Nothing like candy with a morning blood draw.

I would see Dr. Warren for an examination before getting to my chemotherapy room and Mercedes by 10
A.M
. We would be in that room until 2, or 3, or even 4
P.M
. We would have a rare visitor. Cate’s boyfriend from college, Trevor, a medical student at Georgetown, came to see us in our little room, and Zam-Zam Murad, the other nurse technician, would stop by to check on us. But mostly it was just us, and it was quiet. The change from our previous intense, high-pressure, busy, people-filled campaign existence to our new intense, high-pressure, slow-paced, lonely disease-fighting existence was at no time more noticeable than when I was lying in bed, connected to my IV, with John reading in a chair at the foot of the bed, and a pleasant woman would come with a little cart and ask, “Want a sandwich? I’ve got P and J, I’ve got an egg salad left.” And we’d say, “You don’t have any tuna salad left?” She’d check and invariably say, “Well, look. I’ve got one tuna salad right here.” And we’d get it. One tuna salad and one P and J, and we’d split them.

Most of what happened during those months of chemotherapy happened at home. I would have my chemotherapy session on Tuesday, and then I would have a couple of good days when I could do just about anything I wanted. I would shop for fresh groceries. I had lunch with friends. After those days, for the next week or longer, I would really try to minimize what I did. The steroids I took made me hungry and achy, but the worst was the Neupogen injections I did daily for a week each cycle to keep my white blood cell count up. They had warned me about Neupogen’s side effects, but I was cavalier. The shots weren’t hard—I had done this when I was trying to get pregnant. But with each round it got worse. With each round my bones and my joints hurt more, my knees were stiffer, my fingers ached more. And there was no respite in being still: when I would lie down in bed, it was constant pain from head to toe. Walking was difficult—I would plan my trips up or down stairs—and writing was almost impossible. I was trying to answer letters I had received, but after three or four notes, my hands would be in a painful cramp. I had tried so not to be a victim, to be the master in this, but it was hard not to feel the strain of it when the drugs were so debilitating. I didn’t like it, but it was undeniable: I was a victim. I suppose we might have learned when Wade died that all control is illusory, but we cling to that, even after all the lessons. And despite the lessons, I cling to it still.

It helped to have Emma Claire and Jack. I could sit and read to them—and they understood that was about all I could handle then and they never complained. It helped to have Randy Galvin and then Heather North, who helped with the children, who would cheerfully run with them when I could not. It helped to have Lexi and Matthew, who managed the schedule of appointments, who made sure I had the medicines I needed and rides when it was difficult to drive. And most of all, it helped to have John. I thought all the time as I was dealing with this, feeling the aches, marking off days of my life in which the only thing I did was fight cancer, that there are women who were doing exactly what I was doing except they were hauling the groceries, taking care of the kids without help, and going to work. I had lots of help, the luxury of no job, and I had John.

On one snowy day that closed the area schools, I passed a woman—her obviously bald head covered by a knit cap—in the halls at Georgetown Hospital. She had two young children and she was carrying snacks for them, taking care of them, while John was carrying everything I might need during my chemotherapy session. It was impossible not to feel lucky…and guilty. My empathy increased as we started getting correspondence from the insurance company. It was unintelligible. John was a senator, a presidential candidate, and a vice presidential candidate; we were both lawyers—for decades—and we still had no idea of what most of the insurance company notices meant. Were they rejecting claims for the most basic services? Was only part of an MRI charge covered? Did they not have the right documentation from the doctor or was this procedure never going to be covered? We could not imagine what it would be like for someone like the knit-capped mother of two who depended on her insurance. Where would she even get the time to figure out what these letters say and what she needs to do to satisfy the insurance company? And if nothing is going to satisfy them, where’s she going to get the money to pay for what she thought was covered by insurance? I thought about all the meetings on health care policy that had taken place in our family room, young dedicated people who had studied the problems and were suggesting responses and programs to John. To his credit, John was at least as informed by the woman in the knit cap as by the academics. At meetings he would invite the anecdote, the stories of how policies affected real people’s lives.

The staff learned, of course. To get John’s attention, don’t start with how well your idea polls. Start with “I met a young father who…” or “I have an aunt who inspects nursing homes and she said…” Maybe it was the storyteller in John, the part of him that had been informed about health care first by those whom the system had mistreated, the part of him that had for twenty years told those stories to juries. And it wasn’t just staff telling stories to John. John and I would both be talking about what we were hearing. How in the world were people making it? The answer is that some weren’t. Some were, of course, but some of those only with the generosity of others.

During the campaign, I had held a panel discussion on women’s health care in North Carolina. On the panel was a woman named Pat, whose husband had gotten up one morning and, with his—and her—health insurance, walked out on her. And then she discovered she had breast cancer. Her community stepped up, the doctors and nurses, her friends and neighbors, and she was making it. She gave me a lovely jacket she had made, which I might have worn instead of what Hargrave called my Courage Jacket if we hadn’t had to return it because it exceeded the Senate’s gift restrictions. After I was diagnosed, Pat sent me a lovely—and considerably less expensive—cap she had made, passing on the generosity she had been shown. At a Silver Lady Fund benefit in Miami, I heard from a woman who had made it through her struggle because the Fund had helped her with transportation and child care, meeting the expenses of the disease that insurance would never reach. John packed away what we saw and heard, packed it away for another day. There was so much to be done, but for now we had our own fight.

For the clinical study I had more tests and more MRIs. The MRIs were a completely leveling experience where—so that a record can be made of changes in the tumor—you lie facedown with your bare chest hanging over the edge of a table. And there were also periodic analyses of core samples of the tumor. A beautiful Greek doctor, Erini Makariou, very polite and very elegant, would apologize as she shot a little needle into my breast—it sounded like a children’s cap gun—to take a core sample of the cells in the lump. The first time she had to take a sample, she said it was easy as pie. You’ve got a huge target there, she said of my tumor. From where do you want to take the cells? By the last core sample collection, she was just beaming, saying, “It’s hard for me. I try to put the needle in but there’s nothing there. It just goes right through.” It was, I imagined, like the wrappings left over from what had been a full package of cancer.

I don’t know what the study said about how much doctors can learn from such constant testing during chemotherapy. What I do know was that, as a patient, it was terrific to have constant progress reports, particularly since the tumor was responding to the chemotherapy. And what’s more, the clinical study team, like the chemotherapy team, made me feel I had people who were cheering for me the whole time. Ann Gallagher, who monitored the study, held my hand during these sessions, squeezing it with excitement as the good results rolled in, and smiled as if she herself had just gotten the best present imaginable. Honestly, they couldn’t have been better cheerleaders if they wore sweaters with Elizabeth written across them. This was their victory, too. I know that people say they are under Dr. So-and-so’s care. I didn’t think of it that way. I liked my doctors immensely, but I spent more time with Ann and with Mercedes, and I felt I was under their care. It was with them—and John—that I most wanted to celebrate whenever we got good news.

After four sessions of the first drugs, I started my four sessions of Taxol, again once every two weeks. Taxol took longer to administer, and I felt more drained after each session. The truth is, I had just gotten worn down. I had used up all of my reserves. It is like a marathon, in which your body cannot possibly store all you need to finish the race, and you know that what must propel you in the last miles, if you make it, is simply the will to finish. And that’s where I was. On the days when my hand wouldn’t cramp, I could answer letters. The rest of the days, well, I was pretty useless. The hardest part was the children, for I could hardly be reassuring when I was so sore and tired, so very tired that by the end of chemotherapy I was going to bed before them. In a sad reversal, they would come into my bedroom and kiss me goodnight.

My last chemotherapy session was on February 15, 2005. Mercedes had a friend of hers make me a cake with the UNC logo on it. Mercedes, as usual bragging about someone else, told us how difficult it had been to get the
N
and the
C
just right, and hadn’t her friend done a nice job? We brought cookies—for Mercedes and all the nurses who had fed John cookies over the last fifteen weeks, and we brought flowers for Mercedes and Ann. It couldn’t be a tearful goodbye because it was such a happy goodbye. We couldn’t be sad, and yet, despite the cake and the cookies, we couldn’t quite celebrate either the end of a great collaboration.