Editor’s Note: What does the cancer patient know that the oncologist cannot? The patient, unlike the oncologist, knows first-hand the life-changing effects — and indignities — of having cancer, unless the oncologist is also a cancer survivor. Lidia Schapira, MD, assistant professor at Harvard Medical School, discussed with Laura Liberman, MD, how the experience of cancer altered her practice of medicine. Dr Liberman is professor of radiology and director of the Office of Faculty Development at Memorial Sloan Kettering Cancer Center, an author, and a survivor of lymphoma.
Easier Said Than Done
Dr Schapira: You write so beautifully about having and surviving cancer. How did being a doctor affect your experience as a patient?
Dr Liberman: I had been working at Memorial Sloan Kettering Cancer Center for 17 years as a physician when I was diagnosed with stage IV lymphoma. It was very odd to be a patient, a cancer patient in a cancer hospital where I had been a doctor for so many years. It felt like I was in a play in which I knew all the lines, but I was reading the wrong part.
Dr Schapira: Could you elaborate?
Dr Liberman: As a doctor, I had always encouraged patients to take things one step at a time. There are so many decision trees, and the results of one test can affect choices you’ll have to make down the line. You could spend a lot of energy worrying about something that may never be a choice that’s relevant to you. But when I was in the position of being a cancer patient, I realized that taking things one step at a time is much easier said than done.
Dr Schapira: Can you talk a little bit about fear? What were you most afraid of and what helped you get through those fears?
When you’re diagnosed, all of this information comes at you…It’s hard to take all of that in, even for someone with a lot of knowledge.
Dr Liberman: When you’re diagnosed, all of this information comes at you. The doctors talk about what you have and what’s going to be done. It’s hard to take all of that in, even for someone with a lot of knowledge. They were going to put this catheter in my brain and I was going to have to have intravenous chemotherapy as an inpatient and an outpatient. I was really scared. A dear friend who also was a cancer survivor said to me, “You don’t have to agree to do the whole thing; you just have to agree to start and see how it goes.” That gives you the feeling that you have some control over what’s going on. What helped was telling myself that this one thing is what I’m doing; I’m just doing this now.
Dr Schapira: In what ways do you think that being a physician changed the way your doctors related to you?
Dr Liberman: I didn’t try to be my own doctor. When I was diagnosed, one of my doctors offered me articles about the type of lymphoma that I had. I didn’t do a lot of investigating. I thought it was best to pick a doctor and an institution I trusted, and for the most part to rely on them to be the experts in treating my cancer. It’s hard to be objective when you’re the patient.
Yet, being a physician, I was a little more vocal about what I wanted or needed—for example, with respect to pain control. Depending on what cancer you have, you can undergo a lot of procedures. Each one might not be particularly painful, but over the course of treatment, the pain adds up and becomes one more thing to dread each time you come for an appointment. I think if I hadn’t been a physician, I might have been hesitant to ask for pain control. Sometimes patients try to not ask a lot of questions. They want to be a “good patient” and don’t want to bother the physician. They don’t know that some of these things are optional and can be discussed.
Sometimes as physicians we get so focused on curing the cancer that a small amount of pain is not really appreciated as something that needs to be addressed. Offering a little local anesthesia gives the patient one less thing to dread and it communicates that you care to relieve his or her pain. One of my goals in writing a book about my experience was to share some of that information with patients so that they would be able to ask similar questions.
Underwear and Other Indignities
Dr Schapira: Do you try to connect more with patients to make difficult moments more bearable for them?
Dr Liberman: I was always very interested in connecting with my patients, but the experience of cancer allowed me to relate to patients in a very different way. My field of expertise is breast imaging and breast needle biopsies. After I was treated I continued to see patients for a while, and then I transitioned into an administrative and educational role. I lead a career development program for faculty doctors and scientists and try to mentor new physicians.
A lot about being a patient feels undignified
I encourage young doctors and scientists to take care of themselves. In medicine we’re dedicated to taking care of others, and sometimes we neglect ourselves. I’m involved in programs that encourage wellness for physicians and staff. I also help doctors communicate with patients. I emphasize things they can do that allow patients to be less afraid or to maintain their dignity. A lot about being a patient feels undignified, some of which is not necessary.
Dr Schapira: You mentioned that aspects of the illness experience can be undignified. Can you be more specific?
Dr Liberman: I had to have an Ommaya catheter put in my brain and they asked me to take off my underpants before going into surgery. I wanted to keep my underpants on and had to tell the nurse that I had my period, which was something I hadn’t had to say since junior high school gym. I said to the nurse, “You know, if the brain surgeon is going to look in my underpants for where to put the brain catheter, he’s not nearly as good a neurosurgeon as I hoped he was.”
The nurse didn’t laugh. I don’t think neurosurgery patients tell a lot of jokes.
Dr Schapira: What other aspects of the patient experience would it help clinicians to bear in mind
Dr Liberman: I was an inpatient multiple times.Just being in your clothes in the hospital when it’s possible makes a difference. Even if a physician has only a small amount of time, sitting and making eye contact and engaging the patient is incredibly valuable and ultimately may take less time than if the physician remains standing with a hand on the door.
Dr Schapira: Patients often mention that it is hard to deal with uncertainty and getting through the experience moment to moment. What kind of things helped you?
Dr Liberman: One of the most helpful things for me was mindfulness meditation. It is a form of meditation developed by Jon Kabat-Zinn, PhD, [2,3] at the University of Massachusetts, and focuses on paying attention in the present moment, without judgment. The idea is: If you worry about something in the future and it doesn’t happen, you’ve worried for nothing. If you worry about it and it does happen, you’ve experienced the pain twice. To try to focus on your present experience is very important. Learning this form of meditation really helped me.
Memorial Sloan Kettering has an integrative medicine service, and I’m in a meditation group that meets once a week. A lot of the people in the group are cancer survivors or are currently undergoing treatment. We talk a lot about the anxiety that we face when waiting for results of scans. There’s even a term for it—scanxiety—and how we deal with that.
The New Normal: Surveying the Damage
Dr Schapira: It sounds like meditation techniques and mindfulness meditation have been enormously helpful. Are these techniques that patients and physicians should learn?
Dr Liberman: I think it would be helpful for physicians to use such techniques and to more readily refer patients for them. One thing that’s difficult about having cancer is that you feel that there’s a lot that’s out of your control. Meditation can give you something positive that you can do. It can offer the support of other people and give you resources within yourself to handle stressful situations.
Dr Schapira: It’s also a task. If you are the kind of person who is used to having tasks, it actually gives you something to do.
The hardest part of surviving cancer comes after treatment
Dr Liberman: That’s a very good point. Sometimes the hardest part of surviving cancer comes after treatment. During treatment you have a lot of tasks. You have to get chemotherapy or surgery or radiation. Then all of a sudden the treatment is done and you feel you’re supposed to go back to the way it was before. That can be a very difficult time. It’s like after Katrina; the hurricane is over but now you’re surveying the damage. That can be a very challenging time. For me the meditation was particularly helpful after treatment when I had to get used to what some people call the “new normal.”
Dr Schapira: What was your new normal?
Dr Liberman: My energy level was different than it had been before. I had to rest more and respect those limits. After chemotherapy, as a result of having a compromised immune system, I got a very rare eye infection that usually only occurs in honeybees. I wish I was making that up, but it affected my vision and that’s why I’m no longer practicing radiology, which was my specialty. Having cancer changed my capabilities and clarified what my priorities were.
When you think that you might have a shorter period of life than you had originally anticipated, it makes you want to focus on what’s important and do those things, and jettison the stuff that doesn’t matter as much.
Dr Schapira: It sounds like the illness is really transformative in so many ways. Have there been some unexpected joys that have come as a result of the illness?
Dr Liberman: Slowing down, I think, has given me a lot of joy. Spending more time on personal things has given me a lot of joy. Relating to other people who are in similar circumstances, spending more time with my kids, all of that has been very helpful. Writing about it was helpful. I always loved to write, and this became an opportunity for me to write. I’m still writing.
Dr Schapira: What are you writing about now?
Dr Liberman: I’m putting together courses to teach doctors about the latest developments in cancer biology, because so much has changed in recent years. Doctors don’t have time to go to medical school all over again, so I put together courses that will teach them the state of the art in a way that they can understand. It’s actually very challenging to convey information to scientists at the top of their game in a way that is understandable but not condescending. To illustrate some of the points, I write a poem about the topic of each lecture. I’ve been writing a lot of poems about cancer biology. I was invited to the National Institutes of Health (NIH) to participate in their Great Teacher Lecture Series. I guess they invited me as a great teacher. I read some of my poems at the NIH.
Dr Schapira: It sounds like you’re finding a new niche.
Dr Liberman: I was lucky that my cancer responded to treatment. I wouldn’t want to downplay that. I do feel that I was very lucky
Playing the Cancer Card
Dr Schapira: What was the funniest moment?
Dr Liberman: The funniest moment was when I did something called “playing the cancer card.” A friend of mine told me that cancer is the best excuse you’ll ever have, so use it. Play the cancer card. I had the opportunity to do that. I live in New York City and taxi cabs are a big thing. In my building people are usually very polite and wait in line for cabs. It’s first come, first served, but there are some people who believe that the social contract does not apply to them. There was one woman who, no matter where she was in the line, no matter where I was, she would always jump ahead of me and take my cab. Once when we were waiting in line she tried to jump ahead of me. I said to her, “Excuse me. I have cancer. I’m on chemo, and that’s my cab.” She just jumped back and I went into the cab and drove away. The best part of it was that I wasn’t even going to chemo. I was going shopping at Bloomingdale’s!
Dr Schapira: Final reflections: Are there things you’ve learned that are so important that you’d like to shout them for everybody to hear?
Dr Liberman: For patients, reach out to your friends. A nurse told me that it’s okay to cry but try to keep it to 20 minutes a day. Ask for what you need and be your own advocate. Play the cancer card. Get your priorities straight. Keep your sense of humor. Be gentle with yourself and expect that there are times that are going to be very difficult. Savor celebrations.
One more thing is, really try to take one step at a time, as hard as it is. There’s a book by Anne Lamott called Bird By Bird: Some Instructions on Writing and Life. The title comes from an incident when the author’s younger brother was writing a paper on all of the birds of North America. He was very upset about it because there are a lot of birds in North America. Their father said, “That’s okay, buddy. Just take it bird by bird