ABCG: You were first diagnosed with breast cancer in October of 1988. Looking back on these past 11 years, all of which have been very productive for you, what do you feel has been your greatest accomplishment?

Rodney: I think touching the life of thousands of people diagnosed with this disease and making a difference in their lives.

ABCG: Are there any special cases you recall?

Rodney: Yes, there was a woman who was in her late thirties and had adopted three children. She came to me and told me that the place where she was diagnosed told her she had six months to live. We had a long discussion with her about her spirituality and her beliefs, and I stayed with her very, very closely. We had about three discussions a week for five years. They told her she could only live for six months, but she lived five and a half years.

She said to me she had adopted her three children, and they were too young for her to leave. I remember she said, “I can’t leave until the last one is finished with high school.” She lived until the last one finished high school. And the place that diagnosed her was a very famous place, and they said they had never seen anything like it. I realized then how much the mind and the body work together.

ABCG: You have had a double mastectomy, chemotherapy, uterine cancer, and a stem cell transplant. Which procedure has been most difficult to deal with, and which has given you the most courage?

Rodney: It was the stem cell transplant. Making a decision with the information and knowledge that was available to me in the spring of 1998 took an enormous amount of courage. I looked at myself and felt that I had to do what I thought was the best way to fight this. I stayed in the hospital twice the length of what was expected.

I had a staph infection probably from moment one, but until they found it, I was very ill. I couldn’t recover from it. But from that horrendous day, I came out with renewed courage, with renewed hope, and with a spirit that really defied the fear I had in the beginning. I went through the fear and I came out of this whole thing with two feelings. One, that the love and the friendship of the community is very important to our well being. They were behind me 100 percent and helped my care giving.

I also learned we need to be part of the decision making. Be it right or wrong, we have to be informed and be part of the decision making. No matter what happened, I made that decision and being part of that decision-making process gave me courage to go through it.

We can’t bemoan what we’ve done. We’ve done it. We’ve made that decision. We have to put it away and just go forward. And now, since then, which is last summer [summer of ‘98], I deal every day with metastatic breast cancer, but I deal with it in such a way that I don’t worry about my dying.

I always think about how well I’m living. Every day I think about that. How do I make this day one that will be happy, fulfilling and full of love. I wake up every morning, and when I look outside—no matter what the weather is, no matter what the situation. I always feel that this is a beautiful day.

ABCG: You jokingly stated in an article from U.S.1: “I was terminal the day I was born.” Your optimism and humor toward your own illnesses is amazing to say the least. How do you maintain such optimism?

Rodney: I deal with death, dying and disease every minute of every day because that’s what I do here. I don’t dwell on my possible death or my dying. I just don’t dwell on it. I’m going to try to explain this. Every day when I wake up, I’m in a state of joy for the gift of life. I give that gift every day. And I know we’re supposed to enjoy our life. I know all about breast cancer; I’ve been taught it all my life, but it never came home to me the way it did after the diagnosis. I love my friends, I love my colleagues, I love my family, I love every day I’m given, and I enjoy my life to such an extent that no matter how long it will be or how short it will be, it will be a fulfilling time.

ABCG: You have inspired many women to keep an upbeat attitude throughout their fights against breast cancer. Who inspired you to deal so positively with breast cancer?

Rodney: My brother. At 41, my brother was diagnosed with gastric carcinoma, and he had just completed about 16 years of medical training. He was a neurologist in Boston. At 41, he was diagnosed with this awful disease. When they found it, it had already gone to seven metastic sites, so they only gave him six weeks to live from the moment he was diagnosed. And he actually lived for a month. This was back in 1980.

I remember so well what he said to me the night before his operation, because he didn’t know how it would come out. We talked and he told me, “Jane, I haven’t lived long, but I have lived well.” And he said, “That’s what I want you to make sure my children understand”. He had three little kids and he said, “that’s how you should live your life.” And that’s what he left me with. And I’ll tell you, I grieved horribly for him. It was a very difficult time, but I kept coming back to what he said to me: live fully, live well, live full of love. And so if you don’t live long, you’ll know that you’ve lived well. And that’s what I’ve lived with since 1980.

ABCG: Your father was diagnosed with breast cancer in 1976. How did his experiences with breast cancer help you deal with the disease?

Rodney: It didn’t really. He guided me, he supported me, and he directed me throughout my whole life. That was the first time I dealt with death, dying and disease. And I did it in such a way that I look back at it later and realize that I didn’t communicate with him the way I felt I could and should have. But I had no skills. It was new to me; I had never lost anyone.

The first time you deal with dying, you really don’t understand how important it is to communicate with the person who is going through that. And I didn’t; I wasn’t able to. So the lessons I learned were that it is really important to be honest with the patient, to say what you need to say, and to let them say what they need to say. That is really, really important. And I learned that because I didn’t give him the chance, as I did my brother and my mother.

I didn’t ask my father what he wanted. I didn’t ask him what he needed me to do for him. I didn’t know how to communicate with him. So what I learned from my father is that communication with the patient is very, very important. I didn’t do that with my dad, but I did it with everybody else from that point on.

ABCG: Are you happy with the progress that researchers have made in the field of breast cancer? What can they improve upon?

Rodney: Nobody is ever happy with how fast things are going. They always want it to go faster. When I was diagnosed in ‘88, and I looked at what had been accomplished since the mid 70’s until ‘88, there had been very little movement in my estimation with diagnostics, treatment, and surgery, except for the jump where they were no longer doing radical mastectomies.

Since ‘88, I have seen enormous jumps in everything, from surgical procedures, being able to choose between lumpectomy and mastectomy, and with different treatments such as Taxol and Tamoxifen. It’s a totally different world. So yes, in the last ten, twelve years, there have been enormous jumps, but we have a long way to go. We all know that, but because of the funding at the National Cancer Institute for breast cancer and because of the advocacy movement in breast cancer, we’ve seen more than tenfold the amount of money going into breast cancer from the early 90’s to the present. That’s why we’re seeing the fruits of that now.

ABCG: Do you feel breast cancer patients are given equal opportunities to participate in clinical trials?

Rodney: I think this is something that is changing, but is changing slowly, depending on where you live and where you go for treatment. It also depends on the philosophy of the physician you’re seeing, and then it comes down to the patient and where they stand on their thinking about clinical trials. I personally emphasize to each and every woman how important clinical trials are to us and to the future. If you look back before the mid ‘80’s, you couldn’t find women in any clinical trials.

The feeling many patients have is “they’re not going to use me as a guinea pig.“ I hear that all the time. I discuss with them this is never the case; you will never be given anything less than the standard of treatment that is given to everyone. I feel the whole medical community should be constantly discussing this with people. I think physicians play a major role in overcoming the negativity that seems to go through many patients because of their lack of knowledge regarding clinical trials.

ABCG: What advice do you give women who have been recently diagnosed with breast cancer?

Rodney: I follow their lead. Sometimes I just listen and say next to nothing. Other times I know they need many different things. Sometimes they just need a shoulder. Sometimes they need to have information that they were given but don’t understand. So there’s not one specific thing that I ever say to anybody. There’s different things to everyone, but the one thing I tell every individual is, “Your life and your role changed the minute they told you have breast cancer.”

Another thing I tell everyone is, “We are not medical people here. We are all breast cancer survivors. And so what we are going to share with you is a patient’s perspective, a survivor’s perspective. Sometimes it’ll be useful and sometimes it won’t. But it will give you a different perspective.

ABCG: How far do you think we are from a cure?

Rodney: I’m not a negative person, as you know, but I think we’re a long way from a cure for breast cancer. But saying that, I also think we are going to be able to treat people and keep them alive for a very long time, especially as we get into genetic engineering. I have great hope for that.