Authors: Elizabeth Edwards
He would be there for my fight, as I had been there for his. But it wasn’t a fair trade. My fight was one neither one of us wanted; we knew it would drain us in ways we hadn’t even yet imagined. We would have to summon reserves that we knew from sad experience were there, but it was nothing to which either of us could look forward. On the other hand, I thrived on his fight; it had fed me to campaign beside him these past two years. I needed it, and in the months ahead, when I would sit so tired and alone or with him beside me, I missed it—Hargrave and Ryan and Karen, the young people around me, the seniors I embraced, the mothers and the waitresses, the sense of purpose that was so much bigger than cancer. But it was over, and all I had to fight was cancer, a fight that would only take from me and from him and would never nourish me, or him. He got the short stick.
We talked to Dr. Cliff Hudis at Memorial Sloan-Kettering Cancer Center in New York on that anxious Thursday. We asked Cliff to oversee my treatment, to make sure we were making wise decisions. Cliff had precisely the no-nonsense way of talking that we needed. He’s brilliant in the most accessible of ways, and although he serves nothing with sugar, he’s never negative. If it hadn’t been for that spot on my liver in the CAT scan, I would have felt great after talking with him. But there was no denying that spot. We also talked to Barbara Smith from Boston about what our next steps should be. She recommended that we see Bob Warren at Georgetown University Hospital. We didn’t waste a minute. By early that afternoon, two days after the election, we were in Dr. Warren’s office. Friday we were at the hospital again, and again on Monday for more tests. And on the next Tuesday, November 9th, a week after the election, I had my first chemotherapy session.
When we first went to the Lombardi Center at Georgetown University Hospital, the staff wanted to reassure us, but words were not going to put us at ease. Test results might, so we kept asking about the MRI of my liver. We thought of little else, including the breast cancer, except whether the anomaly the CAT scan had identified was a benign angioma—a collection of blood vessels—or metastasized cancer. Dr. Susan Ascher would do the MRI. Between Susan in Washington and Dr. Barbara Smith in Boston, I felt as if we had walked onto the sets of soap operas peppered with attractive women playing doctors. But these doctors were for real. Knowing how anxious we were about the MRI, Susan arranged for one immediately. I think I was in the MRI scanner within a half hour of meeting her. Although a technician usually watched the MRI images, Susan watched them herself. John sat with me in the room where I was placed into the scanner, and from his chair, he could see Susan studying the images on a monitor in the next room as the dye they had put in me made its way to my liver. If the anomaly, the growth, didn’t take up the dye, it was cancer. When it filled up my anomaly, the dye going where the blood would have gone, Susan knew it was an angioma. John said he could see the relief wash over her face. For now we were on the right side of the statistics, but we were still a long way from the end of the testing.
We agreed that I would participate in a clinical study that involved additional testing during the course of chemotherapy—periodic MRIs and something like needle biopsies, where a core sample from the tumor would be drawn and analyzed every few weeks. My doctors knew that the chemotherapy, surgery, and radiation regime they were suggesting was effective, not because they had guessed it might be effective but because this sequence had been honed through trials and studies long before I found my bump in Kenosha. Dr. Warren had an arsenal at his disposal, an arsenal provided to him by doctors and scientists surely, but available only because women before me had said yes when they were asked if they would participate in a trial or a study. And with each trial, each study, each woman, the treatment for breast cancer was improved. I knew I could not repay those women—most much braver than I, many of whom had taken a chance with their own treatment in order to help find the best treatments for all of us—except by helping the women who would come after me. It was, oddly, like cleaning the graves of children buried near Wade after their mothers had died. It is a continuum in which I believe. And in this case, I might be making it better for myself, too. The study meant we would be getting more information, and more information was good, wasn’t it?
Well, maybe not. It was 8
P.M
. that first Thursday night when I had the last of that long day’s tests, a bone scan. We weren’t worried; in our mind the real test, the MRI of my liver, was behind us. While I lay on yet another metal table dressed in yet another sheet studying the last film the technician had taken, a scan of the bones in my hand, still glowing on the monitor, the technician read the bone scan film in an outer room. John sat beside the technician, who spoke to himself as he pulled up each image. John listened to his easy patter. “This is fine, this is fine, this is fine,” and then he stopped. In a few seconds he said, “You know, this is abnormal.” He kept saying it. He turned to John, “I really want to send you home not worried because I know you don’t need this right now, but there’s something on one of her ribs on the left side.” Although it didn’t look like cancer, although it could be anything, including something as benign as getting bumped there years before, it could be bone cancer. No odds this time with which to chase away sleep. No Googling “bone cancer prognosis.” It lay there as I lay on that table, covered by the thinnest of sheets. And it remained unresolved until the end of the next week when we went up to see Dr. Hudis in New York. Dr. Warren had sent the bone scans with me so that he could have Dr. Hudis’ opinion. I don’t think Dr. Warren thought it was cancer, but he wanted us to have a second opinion. And we got it in just a few seconds. It might have seemed anticlimactic had it not been the ending for which we had hoped. Cliff looked at the films and said this is absolutely nothing. That’s all we needed. We trusted him entirely. And we knew we could now quit worrying about bone cancer.
At the end of the tests on that first Thursday, we sat again with Dr. Warren, to map out a plan of attack. He was organized, attentive, and sweet—and aggressive in his treatment, which was particularly consoling to us. Barbara Smith had already given us the broad strokes: chemotherapy, pause, surgery, pause, radiation. Now we were filling in the line drawing and deciding when to start. He was talking about starting the chemotherapy in a few weeks. No, no, we said, we wanted to start right away. Tomorrow? He couldn’t make that work. Monday? No. We wound up starting chemotherapy on Tuesday, November 9th, one week after the election.
So the first weekend after the 2004 election was also the last weekend before chemotherapy started. We had some of the staff over to the house, we watched football, we played basketball with Jack and Ian Moore from next door, Emma Claire played with Patsy’s dog in the back alleyway, and I tried to spend the time not thinking about being sick. It was hard, of course, because I was sick, and hard, too, because people who wished us well kept telling us so. Teresa Heinz called me to give advice about what she had learned—she’d sweetly been on the phone doing what we had been doing, trying to find the best place for my treatment.
“There are plenty of good doctors,” she said. “Just don’t use…” and she named one of the doctors on my team. There were real valleys in this process, and sometimes the valleys are precipitated by little pieces of misinformation from which no one can really protect you. And on that first weekend, Teresa’s warning—which we concluded was wrong—sent me into a real valley. If you had hit me in the face with a two-by-four, I don’t think my expression would have been much different than it was listening to Teresa. I wanted to know why and I didn’t want to know why she’d said that, and mostly I wanted the conversation to end. I thanked her for all the work she had done on my behalf, and I meant it. Then I hung up and fell right off the razor blade on which I had been sitting, the one I had been denying for the past days. There was no part of me that did not feel beaten. In the bad-moments department, this was pretty huge. This time it was John’s turn to be the upbeat to my downbeat. He reminded me what I, on reflection, might have figured out, if reflection had been possible: people who have bad medical results want to find a reason, and a lot of people blame a doctor. He’d seen it hundreds of times when he practiced law, hundreds of times when he had turned cases away because—despite a bad result—the doctor had done nothing wrong. Not all cancer patients live, even those getting the very best care possible.
When Vicki, Ted Kennedy’s wife, called to share with me what she had learned when her daughter had had cancer, I broke apart again and told her about the conversation with Teresa. Vicki suggested we talk to Alan Rabson, deputy director of the National Cancer Institute, about my team of doctors. Dale, a friend from English graduate school, had also recommended I speak to him. John, seeing how desperately I needed reassurance, moved mountains to get Dr. Rabson on the phone. He assured us that we had made good choices, that we had a fine team of doctors. John ran interference for me from that time on, protecting me from anything that might send me back down. And that evening, after a mild November day, he and the children and I all walked down to Thomas Sweet’s and walked home, each with an ice cream cone, as if we hadn’t a care in the world.
On the first day of chemotherapy, Anne O’Connor put us in a small room on the clinical trials hall and went to find the nurse technician. She came back in with Mercedes Watson. Mercedes is tall, and dark-skinned with a pretty face, and eight different hairdos—one for each of my eight sessions over the next fifteen weeks. She was strong and cheerful, a perfect match for us or for anyone needing to feel that all good things were still possible. It is said that cancer is a disease that hits the whole family. Well, Mercedes signed on, too; she would be part of our family for this fight.
Throughout the treatments, she was by my side, telling me what she was doing, no matter how obvious it was, and telling me what I could expect to feel. Between her lessons and warnings, she would fill the silence with stories about her family or her house or the weather. As Christmas approached, it was what could she get her son or how much help her daughter had been wrapping presents. I would talk about wrapping presents with Cate—in our hectic lives lately that usually meant staying up till 4
A.M
. on Christmas Eve wrapping gifts that would be unwrapped at 7
A.M
.—and it turned out Mercedes and her daughter did the same thing. The one thing the conversations would not be about was cancer. It was as if we had both come early to a PTA meeting, and although we didn’t know each other well enough to talk of real intimacies, we knew we had something in common, so we talked about life in a general easy way. Just like at PTA.
So here John and I were—a week after the election, a week after private planes and hairstylists, after Secret Service and buttons with our photos on them, a week after stages and television cameras—here we were, the two of us, in the most spartan of hospital rooms. One bed. One chair. A doorway to the corridor, through which we would watch as passing patients or staff would casually look in, then slow or circle back for a second and third walk-by as they tried to figure out if that man in the jeans and sweater really was John Edwards. A side table for my soda and Mercedes’ supplies. An IV pole. And a single window out of which we couldn’t see much except the weather.
The first four chemotherapy sessions—one every two weeks—would be injections of two drugs. These drugs, I knew, were going to kill all growing cells in my body. I was warned they were going to make my nights uncomfortable and my days unpleasant. I would feel tired and sore. I would bruise and bleed, my skin would change, my nails would yellow, I would feel nauseous, and I would get sores in my mouth. And my hair would fall out. I could not wait to get started. I wanted to be a warrior.
Can you go to war while you are sleeping? Because if you cannot, I was not actually a warrior. The first drug Mercedes gave me each visit was something to stop nausea. It worked—I was never nauseous—but it also made me sleep. If there was an expected side effect, good or bad, of any drug they gave me, I experienced it. Once when I had a day surgery, the doctor, who had warned me that the anesthetic could cause nausea, hadn’t listened to his own warning. As he was leaning over to tell me I was fine and could go home, I threw up all over his shoes. My white blood cell count was supposed to go down during chemotherapy, and it did. So I gave myself injections at home to keep the count up, and that worked, too. The Taxol I was later administered could cause an allergic reaction that, if it occurred, would show up at the first dose, turning my torso and face red. And it did. In a few minutes, fortunately, the redness faded. Anemia? I had it. So when Mercedes started whatever medicine made me sleep, I would drift off on cue, while Mercedes told stories about the deer in her neighborhood that had startled her, or some problem she had with her car, and I would sleep through at least half the session. The list of distasteful side effects gets far worse after anemia and sleepiness; it would give me no pleasure to write it, and it would give a reader no pleasure to read it.