And now, she is the patient. For decades, as a surgeon, researcher, professor and medical celebrity of sorts, Susan Love has led the charge against breast cancer and for women's health. She served on President Clinton's cancer advisory board. She set up a research foundation. Her book on breast cancer is on the short shelf for clinicians and counselors. And last June, when, like so many women, she was feeling and doing fine, the diagnosis came. Except it wasn't breast cancer but leukemia. The woman who has battled one kind of cancer on behalf of millions of women finds herself fighting another kind, on her own
behalf but not alone.
How did you find out you had leukemia?
My rheumatologist was retiring, and I had some arthritis, nothing serious, and I went in to see her. Rheumatologists always draw a lot of blood. I came back to work. I had run five miles the night before. I was feeling fine. I got a call two hours later from my primary care doctor saying: "I have shocking news for you; come back right now to UCLA for a bone marrow biopsy." The whole way over, I'm trying to remember — blastocysts, what does that mean again? When it's you, everything's out of your brain. Within 24 hours I was diagnosed with leukemia.
You've been on the other end of that call so many times.
Absolutely — those shocking phone calls where you change somebody's life. Your whole sense of yourself, of the future. It's "Oh my god." With breast cancer, it's a lump, but it's not like you're throwing up — you feel fine, then somebody tells you, no, you have terrorists growing in your body. So it was quite shocking. Within two weeks I was in City of Hope.
What did they do?
With leukemia, the blood cells have gone off. So you can't really have surgery; you can't cut out somebody's blood. You carpet-bomb — you blast away with chemo, and you kill everything. That's step one. Then you wait a little and make sure there wasn't some terrorist hiding in a cave that crawls out again. Sometimes they do it again to make 100% sure. Then they give you a bone marrow transplant.
Luckily my baby sister's bone marrow was a match. It's really a trip because it changes your blood type. I was O positive and now I'm B positive. That's actually good because if there are any leukemia cells that crawl out later, the new bone marrow cells recognize them as foreign and can knock them off.
You had a team — doctors, nurses, your partner, your daughter, your siblings.
I had somebody in the room with me all the time. And City of Hope — they have two floors for bone marrow transplants. They've been doing it forever. The nurses, the orderlies, everybody there — that's what they do, and that's what you want.
How are you now?
Right now I'm fine. After the transplant you have to be home for 100 days; your immune system is getting better. If I go to the symphony, I wear a mask; you don't know who's there, and if they have flu or a cold, it's not worth it. Right now my bone marrow is clean and I'm feeling stronger, but something could be hiding — you never know.
If you have appendicitis and I take out your appendix, you're cured. But with this, it's not, "Now you're done and back to normal." You live in a different world.
Has leukemia changed your attitude toward breast cancer and your work?
In a couple of ways. About a year ago, I was at a conference in San Francisco, and I said, "We're all patients" — that the difference between a researcher and a patient and a doctor is that a patient [has] a diagnosis. We all need to put our expertise together.
It was prescient — little did I know! I feel even more strongly now that we make this artificial boundary. We have to rethink how we approach research. [Researchers] want to study ideas that might have applications to diseases, but we need to have the people with the diseases saying, "These are the things we need answers to."
In the old days, Pasteur would go from the patient's bedside to the lab and back again. But now doctors take care of patients; the researchers are way over here. Research is driven a lot by how we can get the next new drug that will make a lot of money and make us famous, as opposed to answering these questions.
I always talked about but never fully knew the collateral damage of treatment. Now I know it in a real way. I know it in my numb toes. I know it in the metallic taste in my mouth. These are things physicians discount. They're "You're lucky to be alive." [Doctors] focus on survival and not on what you have to live with.
If anything, having cancer myself has given me a new sense of urgency. We have a limited number of days in our lives — you become more aware of that — and if I'm going to spend them coming to work, then I'm not going to be just diddling around.