Speech to the National Coalition for Cancer Survivorship

November 3, 1994

ITEM DETAILS

Type: Speech
Physical location/Show name: The National Coalition for Cancer Survivorship
Date is approximate: No
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Transcript

Sandra Day O'Connor
That was a wonderful introduction. I don't know how Natalie got all that information. But she really did some research and made it fun. I don't have a magic wand to wave. I'm here this morning really chat very informally with you about this business of being a cancer survivor. It's been six years since I underwent surgery for breast cancer. The impact of diagnosis of cancer at that I received is is one which has not been far from my thoughts at any time during these six years. But as Natalie told you, this is the first time that I have spoken publicly about my experience. And I'm not sure that my experience is any different than anyone elses. In fact, I'm quite sure it isn't. So what I have to say this morning, for those of you who are here, as survivors, or friends or relations of survivors is going to sound hauntingly familiar. I suspect, Dr. Mark Lippmann invited took me to come here today. And he was a tremendous help to me in the period after I was diagnosed as having cancer. And I've continued to see him from time to time at various events, and have been most impressed with the work that he has done to further research into the type of cancer that I had.

You're gathered here today, not just as people concerned with breast cancer about all types of cancer, and to discuss all aspects of a cancer survivorship, the effects on the patients on their families, the health care professionals that take care of them, and in the community in which they live. And it's a topic of interest, almost everyone today, we read that one and 10 women will develop breast cancer. And we read that one in three people will develop cancer in some form. No family in America is without its experience with this terrifying disease. That means we're all in this together where we need each other. And we need as much help as we can get to face and to deal with cancer when it affects us, or someone close to us. My own experience. And observations, as I've said are like those of others. When we're dealing with things as basic as life and death, and a disease like cancer, there's a universality to the experience.

We begin with the anxiety of going through the testing, something is seen on a mammogram or an X ray or there's some little spot on your back, whatever it is, and then you start this round of testing, x rays, CAT scans, whatever. And the initial impact for me was one of general disbelief. I felt fine, just fine. But I was told you better go have these tests and find out. And then after the the usual biopsies and other tests that are made. I was told that I had a potentially fatal disease. Now that gets your attention. The big see the word cancer it over Wilms' the psyche, just the word I couldn't believe I was unprepared for the enormous emotional jolt that I received from the diagnosis. I can remember I mean, I just all of a sudden my face and hands my whole body tangled. I couldn't believe I was hearing this. It couldn't be true. I'm too busy. I feel fine. You can't be serious. Well,
the next thing was reality sets them and you decide, well, you know, it is serious, and you better believe it. But I was quite unprepared for the suddenness and the urgency of the rapid treatment decisions to be made. I had planned to go through a couple of more rounds of oral arguments at the court. And I said, Well, you know, maybe I'm December we can work this out. And I was told that was not an option. So I was simply totally lacking in appreciation for the fact that everything had to stop. And I had to focus on this. And I had to start educating myself about what it was I had, and what the treatment options were. And
this was a very tough time.

Sandra Day O'Connor
I discovered that I needed other ears and my own because I was so emotionally involved in this situation that I wasn't sure I was hearing everything. I consulted Dr. Lipman. And I brought my husband along because I thought he could listen with greater objectivity, then I could and we both tried to take a few notes so that we got everything down. I mean, this was a world that was new to us. We didn't know the medical terms. We didn't have any experience with this. And I wasn't sure I was even equipped to absorb the information I was hearing. So it's difficult for the patient to take everything in objectively, it's just too emotional time. So I don't know what you do. If you don't have someone you can take along, maybe a tape recorder? I don't know. But nice if you have someone go with you on some of these consultations?

Well, now, what added to the stress was the fact that I had to make so many decisions about the course of my treatment. That never occurred to me either. I mean, I thought if I got sick, I went to my doctor, the doctor said what ought to be done. And that was the end of it. Right? Wrong. With with this disease, it isn't always that way. Maybe it is was some maybe some kinds there's just one accepted route for treatment. But not with breast cancer. There you run into this whole business of Well, what do you do a lumpectomy or mastectomy or a radiation approach? Or do you have chemotherapy? Do you not? If you have have surgery, what kind how how extensive? I was quite unprepared to realize that I would hear such a wide range of options, and that I would have to make so many choices.

And then I had to ask myself, why didn't I know more about this disease before? I mean, if it's going to strike so many people, why is it that I was so unprepared, Ill informed and educated about it? And why aren't the choices, more clear cut. It helped me to have close friends to talk to people who have gone through the same experience. That Batman a lot, I discovered that one of the women I had gotten to know quite well here in Washington and considered a good friend had gone through this thing, not once, but twice. Well, when I learned that, she immediately became a good resource for me. Because she had had twice the experience I was having, and had survived and was in good spirits about it and lead a wonderful active life. And so there was someone that I could talk with and get some comfort from.

And it was amazing how many people would send me a letter, or come up to me and say, I've had to I've had my mother. Oh, my. So this was good, because I then could start to cry come to grips with the fact that well, you know, it isn't the end of the line, and you are going to have a life that's going to go on and many people do and you can begin to look at the positive side. Now, it is clear that the decisions about what to do what treatments to have, have to be made promptly. And you just have to sweep in every bit of information you can possibly absorb, just become a real student at like cramming for an exam in college when you You let slip all during the semester.

And you've got to get it all at once. And then you have to make some decisions. And then I did what I do what the court you know, and when I'm up the court faced with that case, I try to find everything out about that case that I can I do as much research as I possibly can do. And then I make my decision. And I don't look back. I do not look back and say, oh, what if I had done the other thing, or Oh, I should have done something else. So don't do that. Just do the best you can get everything you can together, make that decision and go on. Now, for me. The decision was to have a mastectomy. And the post operative period was depressing. I felt weak. I felt very emotional. I was hearing things I didn't want to hear. I was some discomfort. It was really a tough time. And yes, I think there were a few tears shed along the way. And it was so intense that I call that friend of mine at home and I said could you come down to the hospital? By any chance? Do you have time? Could you come down and see me. And she did. She dropped everything and came down and we shed a tear or two together. And we talked everything over. And somehow that helped.

I started to acquire books, and tapes and articles. I mean, I have a huge section of my library on this. I was told, "Well, now you're going to have to have chemotherapy, and you're–This is going to take some months, and part of it is learning how to visualize your treatment and recovery." Now, this was tough for me, I'm not a visual person. I'm a practical person. And I've never been someone who has sat around and gone to these encounter groups and thought things through. I mean, I think they're wonderful. I'm not saying that's not good, it would have been good, I guess, in retrospect, if I had understood some of these approaches to treatment, but I made a chart, you know, we I was told this is how many and this is how often and this is over what period of time. So you make a little chart on the calendar, and check the first one off. Now through it, you know, we often despair fall. Second one got through it hair starting to fall. The physical changes were distressing to me. I didn't like that at all. And one of the things that I thought helped me was my hairdresser. I don't get my hair done very often, I tend to do it myself. But luckily, somebody suggested that I see a particular hairdresser. And it turned out this was one of the kindest, most marvelous man I had ever met. And he was totally sympathetic. And he had had lots of women who lost their hair. And he found a wig or two for me. And he just was terrific. And that really did help me now this is someone who was active and starting something called, I think, look good, feel better. Do I have that? Right? Yeah. Which was a terrific concept, wasn't it because you do feel I also am look lousy. And so if you can improve that a little bit, it does help your attitude. And I was tired. That was the main thing. And I'm not used to being tired.

I've had a lot of energy in my life. And I couldn't believe that I needed all that sleep. I'm a person that didn't sleep much. And wow, I could hardly get up. And in the afternoon, I felt like I needed a nap. And this was this was quite a blow. So that was something else I had to adjust to. And the other thing that I realized was that it wasn't just me. I mean, I was being awfully self centered about this. Because my stress and my condition was called causing distress to my family. They were affected. My husband was affected by this, my children were anxious. Friends, or so you began to realize, gee, you better shape up and make a go of this because you're causing a lot of distress for other people. And so you need to put a better face on things and and worry about the stress you're causing others.

What the best thing about all of this was that I had a job to go to. I can't tell you how much that meant to me that as tired and stressed out as I was, I had a job that was hard. And I'm important, and was always there for me to do. And so I just went down to my office and kept working. I never missed a day on the court. I never missed a conference of the court. I didn't miss anything. And it was hard. But I'm so grateful that I had my work to do. And I wonder how people who don't have work to do get by. If all you're doing is worrying about yourself, that's a lot harder than if you have some outside activity to be concerned about to take your attention away from your problems. And it also helped me to resume physical exercise as soon as I could. I'm someone who just loves I have an exercise class every morning of my life. Or when I have time off to play tennis or golf or ski or do something I really like that I love being outdoors.

And it was hard because I lost the strength in my arm and it hurt I couldn't and I was told well you know for at least six weeks, you can't do x, y, and z, but I even–long before the six weeks, I went back to my exercise class, and there was a lot I couldn't do. But I did a little, I did what I got my legs were okay. So I used those, and I still had a fat stomach, so I could work on that. So that helped. And as soon as I was able to do it, I could chip and pop on the golf course I couldn't swing the club, but I can chip and putt. So I would do that. And eventually my nice brands were patient and and hit a few soft tennis balls to me. So I worked back in. Now what was the worst? The worst was my public visibility, frankly, there was constant media coverage. How does she look? When, When is she going to step down and give the president another vacancy on the court? You know, she looks pale to me. I don't I mean, this was, there were people in the press box with telescopes, looking at me in the courtroom, to see just what my condition was. Well, I didn't I didn't like that. Press would call my office and say they'd heard all these dire rumors. And I better tell them exactly what was or they were going to publish them all. I mean, it was really difficult. But even that negative has an upside as most things do. Because I'm a survivor. And because of the media coverage that I have received, a good many people know that. And maybe that's a help.

Now, conclusions, because I've got to go back to work and you have to get busy. What do I get out of all this? What what do I see, I see that we all need basic information. We need clearing houses, for getting support, and education, and help when we need it. Now, let me tell you, my dream of what I would have liked to have had in my situation, which probably is very much like many of you, I think it would be helpful to have all those tests done all the biopsies on the X rays, and whatever it is they're going to do, get all that information, and then have a consultation with all the experts available at the same time who've already looked at these things. They've looked at everything. And they're all in the same room. And they've they've they're there to help you reach a decision, the surgeon, the radiologist, the oncologist, the plastic surgeon, the nurse, a psychologist, and so on everybody there and help you through the process of what to do. I think that would be terrific. Is that realistic? I don't know. It might be.

I thought moving from doctor to doctor with separate appointments and separate approaches, and one doctor not hearing what the other said, increased the uncertainty and increased the trauma. All right, second, we need knowledge. Now how do I deal with the fear of death? Where do I find the best and latest research on cancer treatment? What's reliable? and what isn't? And where is it? And what about the state of the art treatments? How do I find that? Will my insurance cover the costs? Do I need a counselor to help me through this? Do my children need help? And you know what else I can you're worried about? And think we should be worried about? What about the role of nutrition? You know, what about that? You read these books about how this person or that with just cancer, riddling the body got rid of at all with some incredible low fat, whatever diet, brown rice, I think it was? Well, you know, maybe there's something to this, I will have to know about this. I happen to think nutrition is very important. I care about it. But I'm not sophisticated in my knowledge about it.

And so where do we find out about that? What about vitamins? Should I be taking vitamins all along? What about? Should I be taking beta carotene and vitamin D? And I don't know, all this stuff? How do we find out? The doctors don't talk about that? You see the surgeon, he's not going to talk to you about nutrition or vitamins or brown rice. So what do we do? All right. Third, there clearly is the need to support basic research to lead to long term solutions. Cancer is complicated. And it seems like every different type of cancer is going to have its different mechanisms and problems and solutions. And we need to support that. And we should want to know more about current research and the directions that's going and what's happening and how can we help. Fourth, the treatment for cancer is very expensive. And there is a basic concern for how we're going to finance our health care. I mean, there were certainly been a national debate about that. And as a cancer survivor, you might become uninsurable. Let's say you lose your job, and then have to go out and get insurance, there may not be any that you get. And so these are real problems. These are public issues that affect people very deeply, and that we should be informed about support groups.

You can even be a committee of one. And that's what I've been to help others. Since that happened to me, if I see someone or meet someone who's going through what I can be a committee of one to help. And it does help it does make a difference. Six, we need to learn how to become good questioners. We need to learn how to be good listeners. Now I know I'm a good listener, I'm paid to listen and my job. But I don't know if I'm a good question or you need to be a good advocate for your own health care and therapy. Sometimes, you need to be very insistent about something that you feel needs to be addressed. And we need to learn how to do that and how to listen to ourselves.

All right. Is there an upside to all of this? Yes, there is it having this disease made me more aware than ever before, of the transitory nature of life here on Earth, of my own life. And it made me value each and every day of life more than ever before. I mean, I really came to an appreciation for that I had never had a when you're young, you don't think about it, you're going to live forever. And you just don't think in those terms. And as you age, you just don't think about it, unless something like this forces you to. And then you learn what it means to you each day. So it fostered a desire in me to make each and every day, a good day, a better day. In every contact I have with other people to try to make it better to make every relationship that I have, whether it's with my colleagues, or my law clerks, or my doctor, or my friends, more meaningful and special. We need to bring a quality of life for that time that we have here. Now, it also made me aware that as a survivor, maybe I could make a little bit of difference for other people. How many of you here today, remember that eye-popping cover on the New York Times Magazine a year or so ago? It featured. I couldn't believe it. The uncovered torso of a woman artist showing her uncovered mastectomy scar and her single remaining breast. You remember that picture? I think we all saw it, didn't we? It was a very powerful image. And as the editor of that magazine described the responses to it. She said it wasn't just her damaged chest. But her resilient dignity, which was so powerful. It was someone surviving. Thank you.

Host
Justice O'Connor can't stay. She's got work to do what she said. And we just on behalf of all of us, I want to thank you for giving us an agenda that we really can get our teeth into. We started on some of it. And but, we've just yet got a long way to go. So thank you, Justice O'Connor.