Authors: Elizabeth Edwards
Carolina was ahead at halftime, and in the silly way of sports superstitions no one was allowed to change seats. The second-half score was tied when Duke went on a 9–0 tear, and now with 2:45 left in the game, we were down nine points and Duke had all the momentum. The magic of our assigned seating had worn off, so Cate and I changed places. Jawad Williams tipped in a shot, then Raymond Felton caused a turnover and freshman Marvin Williams sank two free throws. Cate and I looked at each other. Not moving again, we said. Sean May converted a three-point play, and suddenly it was 73–71. David Noel stole the ball with thirty seconds to play. We guessed that even John might be yelling. Felton was fouled, and he made his first shot. We were down one. Felton missed his second—but with seconds left, Marvin Williams won the rebound and put it back for the lead. With the free throw he then made, Carolina had scored eleven straight points. Duke’s final shots failed, and Carolina won the game. Here we were in a hotel in Boston screaming and yelling. We had a hotel room with a beautiful water view, but the only thing we were looking at was a television screen, and it looked beautiful to us. It was just the surgical preparation I needed, and, we decided, a very good omen.
Early the next morning we went in for the surgery. So much of what I had been through before was private. In the blood testing room, there might have been only one other patient. In the examining rooms I was alone. During my chemotherapy sessions, I rarely saw another patient. Here, however, at this great medical center preparing for surgery, I was getting a lesson too. In the area where I was prepped there were two rows of beds, ten beds at least on each side, with a center aisle. And every bed was occupied. Every bed a story of trial and, we hoped, of triumph. Certainly every bed held the story of a life turned upside down by disease.
After the surgical prep, I was wheeled to another room where the anesthesiologist came in and talked to me. We had a dear friend, Maureen, who is a doctor in Boston, and she knew how persnickety I was about anesthesiologists and how important I thought it was to get the right one. So Maureen got me the anesthesiologist she herself would have used, a warm pillow of a woman who spoke gently and worked her magic. Once she gave me the anesthesia, I was out. Afterward I was asked: Do you remember this about the surgery? Not a bit. Do you remember that about being wheeled in? Not a bit. I remembered none of the surgery. I remembered nothing about the first postoperative hours in recovery either. I awoke in a private room, John reading in a chair, Cate on the small couch.
Barbara came in at some point in my fading in and out of sleep and told us that the margins were clean—she cut enough tissue around the tumor in order to be certain that she had not left cancer cells—and that the sentinel node biopsy had been positive, so she had taken additional lymph nodes, five of which had some minuscule number of cancer cells, and the others were clean. So that was that. We stayed overnight that first night, and we could have stayed the next as well, but there was a 3:00
P.M
. flight, and I wanted to be home. Cate flew back to work in New York—although she came to Washington to be with us the next weekend—and almost in a blink, this part of the fight was over.
Heather North had stayed with the children, and I am sure she needed a break by the time we got back, but she didn’t really get one. I was wearing a drain so that the waste fluid from the surgery would not collect in my body. It was merely inconvenient, but it did mean that with the surgery and the drain, the children had to keep more distance than they were used to doing, so Heather’s work was not done. In a few days, Dr. Warren took out the drain, but apparently I still had some liquid that should have drained. It collected and collected until I was sloshing everywhere I went. Jack, Cate, and I were watching the NCAA basketball tournament on television that weekend, and every time I moved, I would slosh and Cate would look over at me, frowning. “You need to do something about that,” she said.
I tried to reach Cliff Hudis in New York; he knew the answer to everything, but he wasn’t in, so I did what I had vowed not to do. I got back on to the computer and typed “lumpectomy sloshing” into Google. By the time Cliff called me back, I already knew what it was. I told him I had Googled it. “Googled what?” he asked. “Lumpectomy sloshing.” There was a hearty laugh on the other end of the line. He confirmed that the Internet information was right: it might be uncomfortable and a little embarrassing, but it wasn’t a problem. But it was a lot of liquid. By the time Dr. Warren took it out, a few days later, he had to use every syringe in the little examining room, then root through neighboring rooms for more. As side effects go, it was one of the more amusing ones, which only goes to show how cheerless side effects really are.
It was about this point that I put my foot down. Every conceivable test was being scheduled for me. I wanted to be cautious, but I thought I was getting celebrity treatment—more testing, more caution than was reasonable or usual. One day I canceled a series of tests that they were going to do. “I’m just not doing it,” I said. “If you give these to everyone, fine. If not, I’m not going to do them.” I haven’t gotten a thank-you note from my health insurance carrier yet.
The last step in the fight was radiation, every weekday morning at 7:15. If everything went smoothly, I was back home before the children left for school—but that happened only about half the time. Sometimes the machines were slow in warming up, or the card reader that monitors who has come for their radiation was on the fritz. It was always something, but the worst it meant was fifty minutes instead of twenty-five. Who, after all we had been through, could complain about that?
The early-morning radiation sessions gave me the day to do what I needed to do. We had to plan our move back to North Carolina. We had to plan what the days would look like when we got there. Schools. Furniture. Summer camps. Jobs. What were we going to do? We knew John was going to work on poverty and work issues; it was like electricity, powering him, exciting him. He wanted to do three things: something real, something where he could see a policy translated into real terms; something academic, gathering the best minds, some of whom had advised him in the campaign; and something where he could advocate for change, using his skill communicating with people for this cause. I had seen him do this before—when Wade died, and later when he decided to run for the Senate—and I knew that when he set his mind to it, it would happen. He’d done it when I needed this care: he’d moved mountains. I had enough on my plate, but I wanted to be some part of this, even if it was just sitting in on the meetings, watching it unfold.
And that spring, it did unfold. The real program that will make a difference in people’s lives is set up. In a rural North Carolina county, a very poor, very black county in the eastern part of the state, where a lot of kids don’t go to college, the program College for Everyone has already started providing every high school graduate the chance to go. Those graduates who get into college and agree to work will have their tuition paid for their first year. It will be a demonstration that it can be done. The academic work found an umbrella at a newly created Center on Poverty, Work, and Opportunity at the University of North Carolina. And the advocacy has taken him across the country working on raising the minimum wage and fighting for the rights of workers, particularly service sector workers. This may all seem outside my story, but this is a man who gave me everything he had, just at a time when he had every reason to focus on his own losses. It gives me such pleasure to see him again wrapped up in something positive, something inspiring of his own. So I sat silently—well, mostly silently—and happily through the meetings that took place in our D.C. house. Mornings in radiation, afternoons in meetings on poverty, evenings packing away what we would take to North Carolina. It seemed like life was regaining a cadence.
I would leave the house at 6:30
A.M
. and drive over to Sibley Hospital to be there for radiation at 7:00. John stayed home, and while I lay on the radiation table, John was making the children breakfast. At radiation, I saw the same people every morning. A sweet man with a German accent and I were the earliest patients. He’d usually beat me in and be sitting in his black socks, wingtips, and hospital robe by the time I clocked in. We’d talk. If there was a new magazine on my table, I would share it with him, and he would do the same. We didn’t have to say many words to feel the connection between us, and we didn’t have to name our afflictions or say our names; they were not important. I never knew what kind of cancer he had. I never knew his name. I only knew we were on a journey together, and that was what was important. I finished at the end of May, and his last day, his freedom day as he called it, was to be June 11th.
Toward the end of my treatments, the clinic staff began to suspect that another patient was attempting to get a picture of me for her webpage, a “right-wing blog,” they said. I never learned what raised the warning flag and I never knew who the woman was, but as soon as I arrived, a nurse would escort me out of the waiting room into an examining room in the back, and when my radiation session was complete, they would walk me to a side door, avoiding the waiting room. I admit it made me feel good that these people wanted to protect me, even if from nothing more threatening than being photographed during those early hairless mornings. I didn’t begrudge her for trying, if she was, to get a photograph, but I was angry that she had cost me the last mornings with my German friend.
I would come in socks, slip-on shoes, sweatpants, and a sweatshirt so that I wouldn’t need to change into a robe—the changing time might eat into my get-back-to-the-children time. So I’d go into the radiation room and take off the sweatshirt and the T-shirt bra that since the surgery I had taken to wearing for comfort, and climb up on the table under a radiation machine that looked like the end of a gigantic ballpoint pen. My two technicians were entirely different sizes. Hope Shorter was engaging and warm, and very tall. Barbara Higginbotham was more reserved, but since she was short, she recognized when the height of things was an obstacle, and she always lowered the high table for me. They would circle around me, adjusting the machinery, marking my breasts, taking four times as long for setup as for the actual radiation. We talked some at the beginning and end of my treatments, but while they were working, I left them alone. I sang along to the same piped-in songs every morning. I even took to napping during radiation; they’d have to wake me up to tell me to go home.
Over time, radiation works like the sun, a sun focused on a narrow and tender spot of skin. The doctor had warned of the side effects of burning and blistering, and foolishly I had thought I was finally managing to avoid one. Until the skin on my breast, neck, and underarm started to turn red and blister and pucker. B.A. Farrell, our friend and architect, was driving me back from the beach at night when my first blister broke. In the dark car, I slipped my hand under my shirt and felt the warm liquid. On my fingers was a thin paper of skin. Was that skin? What is the liquid? I couldn’t see in the darkness. As close as I am to B.A., I was not going to unbutton my shirt, even in a darkened car. I found a paper napkin and slipped it in over the wet place, while B.A. talked about the new Sunbrella fabrics. It turned out to be a blister, one of a series, where the skin was like the top piece of wet plywood floating above the other layers and ready to peel off at any time. The radiation oncologist with whom I had had such an awkward start was great, giving me the usual topical cream she gave her patients and then even going shopping for a new one she thought might work better. Even with the creams, it was a nuisance and mighty uncomfortable, but the worst, I figured, was over.
Everything had gone well. But, honestly, I think I was prepared for any result. Even an optimist has trouble finding something good in the death of a child. But Wade’s death had given me a level of protection: words couldn’t hurt, and even the words “You have breast cancer” couldn’t hurt so much. Unlike so many women who had to sit stoically and receive the news that their life would not play out as they had planned, I had already had to make that adjustment. Lump in my breast, bump in the road, just things to be dealt with, and we would. It was hard, of course, not so much for me, as for what it meant for my children. It meant the very real chance that I would not be there for them.
As the treatment drew to a close, I was also closing our life in Washington, packing and labeling and throwing out. I packed away some of the gifts I had gotten from strangers and from friends, from supporters of John and supporters of other candidates, from survivors and from the families of those who had lost their fight. One present—one I wear today—encapsulates all of these people, all that I believe about the innumerable, amorphous, wonderful “us.” It came from Christine Lavin, a singer-songwriter to whom we had listened for years. I heard her once on NPR—it may have been 1992—and I did what we all do, I went to the CD store and I said I think they said Christine Lavin. Lavin, could that be right? Can you help me find something by her? From that point she became one of the constants in our family. She is funny and poignant, and she wasn’t a stranger to finding grace in an unpretentious gift. I remember reading a liner note somewhere about the pleasure she took when Andrea Marcovicci—whose voice I also love—sang one of her songs. I already liked a woman who would take such pleasure in this.