Polly Nooter Roberts: A mother, professor of African arts & culture, and stage IV breast cancer thriver

A mother, professor of African arts & culture, and stage IV breast cancer thriver

Dr. Mary “Polly” Nooter Roberts is Professor of World Arts and Cultures at UCLA, as well as Consulting Curator for African Arts at the Los Angeles County Museum of Art (LACMA). Eight years ago, she was diagnosed with stage IV metastatic breast cancer (MBC), and ever since, she has been a stellar advocate of MBC research and outreach to those living with MBC. Polly is a mother and grandmother, as well as a loving wife to Dr. Allen Roberts, also a professor at UCLA. In the interview below, Polly describes profound personal insights she has gained since receiving her cancer diagnosis—what she now views as an unexpected detour that has led to a reimagining of both her life’s purpose and the meaning of personal transformation.

“Many of our greatest moments of growth─moments of personal transformation and meaning-making─often come from the unexpected detours in our lives as opposed to the best laid plans.”

What did you gain from the Simms/Mann Center and Michael Eselun that you couldn’t have on your own?

Polly: Shortly after my diagnosis in 2010, which rocked our family’s world, the Center came to me. On the very first day of chemo, Michael Eselun, the Cancer Chaplain at the Simms/Mann Center for Integrative Oncology, entered the infusion room where I was receiving my treatment with my husband Al at my side. At first I thought, “Oh my gosh, a chaplain is here — this must be really, really serious. Is this the moment I’m supposed to take my last rites or something?” I recount this anecdote because within about two minutes we were laughing and crying with Michael, and just literally pouring out our hearts. These were not last rites, but rather first rites, the beginning of an amazing friendship and a profound connection with a truly remarkable human being. Everything we shared was – and continues to be — so personal and so meaningful because Michael is an absolutely phenomenal listener and a deeply empathetic and insightful companion who has walked this cancer journey with us for eight years now without fail.

Polly with Michael Eselun, the Simms/Mann Center Chaplain.

When Michael offers his wisdom and guidance, cancer patients are provided with an opportunity to look at things in new ways. Sometimes it is even the inverse of what I might be able to come up with on my own; or just an inspiring alternative. To give you an example, when I was diagnosed at the age of 50, we had two boys and a daughter. Our daughter Avery is older and was already married to James, but our two boys were still in school. Sid was in 9th grade, and after I had been in treatment for a while, there were about two and a half years before he would graduate from high school and our older son Seth would graduate from college. I said to Michael, “Is it asking too much to hope to be here to see them graduate? I mean, I know my circumstances. I know I’m living with stage IV metastatic breast cancer to the liver.” I felt as if I was asking the impossible.

I remember Michael saying, “We tend to be so goal-oriented, and yet if we think about our lives and our most transformative moments, have they been the things we planned for, the goals we envisioned? Or were they the events and crises we didn’t expect that took us by surprise, and sometimes even necessitated a complete change of direction?” Michael gave examples from his own life, and I thought of many from my own. For example, I miscarried before our younger son was born. At the time it was devastating, but without that derailment we wouldn’t have had Sid, and what would life be without Sid? Likewise, who would have known that Al and I would become grandparents to Avery and James’ two shining sons Zane and Felix, both born since my diagnosis? Or that seven years into my cancer journey I would get to see Seth marry a wonderful woman named Molly and start a life together? These are the lights of our lives. So what Michael taught us is that many of our greatest moments of growth, moments of personal transformation and meaning-making, often come with the unexpected detours in our lives as opposed to the best laid plans.

Polly’s thoughts on attending her son’s college graduation…

Polly: When I took Sid to college on the east coast in 2013, I will never forget how hard it was to say good-bye. I honestly did not know if I would survive the four years that he would be there. It was a very poignant time, with multiple recurrences of the cancer in my liver, several treatment changes, and a series of surgical interventions. But last May we attended his graduation! I was elated because here we were, we had gotten through the four years, and he was coming back to California. And now guess what? He is on his way to med school, and I only have to wait four more years until his next graduation, and about ten if you include residency and fellowship! Who would have known that I would be here to see him get accepted to medical school this year? What a gift! I have learned so much from Michael’s approach to life’s inevitable curveballs, and how much we can grow and learn from them. Michael has just changed me in that way. I’ve never given up my goals, but, as he suggests, there is a place for both and a more open way to look at it.

How do you relate to the labels people use to describe cancer?

Polly: I refused to use the phrase “stage IV” for at least the first four years of my cancer journey because I didn’t want to characterize my illness in a way that would make people assume the worst before we had a chance to see what my treatments would do. But the reason I began to use the terminology later on is because there’s often been a misleading divide between people with early and late stage breast cancer. When I was invited to give a keynote at the Komen Race for the Cure in 2015, one of the aims was to bring all stages of the breast cancer spectrum together. My hope was to express that whether we’re stage I or stage IV, we all have the same aspirations — to bring an end to breast cancer and to be here with and for our loved ones. I felt ready to adopt the term “stage IV” about four or five years into it, because by then I could say, “I’m a stage IV breast cancer patient with metastases to the liver, and have been for five years,” which runs counter to the stereotype of stage IV as a death sentence. It’s all about perception and providing a sense of hope, and my mission is to change how we think about advanced stage cancer. There are so many more options available today, both in terms of medical treatments and new breakthrough drugs, and with regard to integrative approaches of the type that the Simms/Mann Center offers so effectively and sensitively. We have learned so much in recent years about the body/mind/spirit connections, and the Simms/Mann Center is all about “treating the whole person,” which is absolutely crucial to an all-encompassing approach to healing.

What has been a surprising lesson that you have learned throughout this experience?

Polly: There’s a funny thing in the cancer world. You know how they always say, “Live in the present and enjoy every moment”? I say that with a little sarcasm because while I am so grateful for every moment, it’s just not that simple. I am a planner. The first thing I do when I wake up in the morning is to make a list while I drink my tea, and my list is sometimes for one day, one month, or even a whole year. I want to live a life of purpose, and I can’t do that without a sense of vision and a belief in the future. Yet, planning is tough when you’re a cancer patient.  I always say that anybody with an advanced diagnosis lives with a sharper sense of uncertainty, whereas there is something in the human psyche that allows most people to go through the day without thinking about mortality. However, when mortality is front and center due to an illness or a condition, you think about the fact that we’re all living that same uncertainty. We all are living in a world of unknowability at every moment. Given that, a lesson I have learned from my cancer journey is that we should make plans and hold onto our dreams, but we should never forfeit those chances to connect right here, right now. And we should not procrastinate in doing what we love most, and especially, as Michael says, what matters most.

Polly and her husband, Al.

Was there ever a time you thought about slowing down or taking a break from work? And if so, what kept you motivated to continue?

Polly: That’s a good question. I will say that having metastatic cancer is a bit like having another occupation! There are so many appointments: I see my oncologist almost every week (which is very fulfilling for me), I have regular chemo infusions, scans at three-month intervals to learn if treatment is working (which always entails considerable worry), surgical interventions and their aftermath, labs and other kinds of diagnostic tests, and referrals for specialists to assist me with side effects. Then there are hospital staysI’ve had quite a few of those. The medical dimensions of what I go through constitute a major portion of my life! While the psycho-social aspects of the experience, with its attendant ups and downs, anxieties and prayers, fears and hopes are far more than fulltime…which is precisely why the Simms/Mann Center is such an important resource.

When I was first diagnosed, it was right at the beginning of spring quarter 2010 at UCLA, and I had two courses already filled with students. But because my diagnosis was so dire, I immediately got a medical leave in order to attend to my healing fulltime that quarter. As I received chemo through spring and summer, we started to get some good results. The tumors were shrinking everywhere, and it was looking quite good, given how terrifying and earth-shaking it had been at the beginning when we had absolutely no idea what this meant or how much time I might have. No one ever knows how much time they have, but the uncertainty was confounding, it was dizzying. And so, it was really important to take that leave. But once things were stabilizing, I had this powerful urge to get back in the classroom, to interact again with students, to continue my life and to pick up where we had left off. I wanted to work because it speaks to my passion for what I do.

My husband, Al, and I have worked for almost 20 years in the country of Senegal in West Africa. In Senegal, work is regarded as sacred. Even when people are engaged in the hardest labor, there’s a philosophy that work feeds your family and family is the greatest blessing. The Sufi mystical saint we study always said to his devotees, “If you have to choose between prayer and work, choose work because you will feed your family and you will still go to Paradise.” In other words, to sanctify work makes work a form of prayer. It’s a beautiful concept. It’s a concept that no matter the difficulty, the exertion, the sacrifice, that work is a gift. I asked my wonderful oncologist, Dr. Olga Olevsky, if it would be alright to return to work while on chemo. She said, well, you know, your immunity is compromised so I wouldn’t normally recommend this, but I can tell how much it means to you. It was so exhilarating to return to my teaching, to be back in the thick of doing what I love. And to have a doctor who understands me as an individual and recognizes that my work is a vital part of my healing.

Dr. Olga Olevsky and Polly in their weekly appointment discussing scan results.

How have you dealt with circumstances that were out of your control during your cancer journey?

Polly: As my cancer journey continues and I have undergone critical recurrences, there have been times when I had to change course dramatically, and it was extremely difficult to face that reality. This is where Michael Eselun comes in again. When Al and I had a big decision to make about a major project for an east coast museum in 2016, we had to face the fact that we could not do it, at least not then. After starting two types of chemo to address a life-threatening bile duct constriction, following on two stent surgeries, at a point where I was having about one good day out of six, Al said, “Babe, we can’t do it. We can’t leave the museum in the lurch. We have to back out and let them know now before everything is locked in.” I couldn’t bear to give it up.

We spoke to Michael at chemo and told him our dilemma, how much this project meant to us, and this is what he said. He said there comes a point even in a perfectly healthy life when it may be time to pare down. In earlier years, it is all about growth and development, building a life, forging a career with all its accomplishments and achievements. But in whatever may constitute the second half of life, why not think about letting go of some of the excess, and chiseling life down to its most essential core.

He described a dancer whose work he had known and loved all his life. And how he saw her perform more recently as an older woman. When he saw her dance, it was the most moving performance he had ever witnessed because it brought the essence of her style and aesthetic into the highest relief. The very core of her being was even more apparent now that all the extraneous elements were gone.

The project that we were to do at the time was an exhibition and book about an Indian saint (a different saint from the one in Senegal mentioned previously) who was a great healer and an inspirational figure during and since his lifetime. Michael said, how do you know that the saint isn’t trying to tell you something? Maybe he doesn’t want you to write an academic treatise about him right now. Perhaps he just wants you to talk about him to other patients in the chemo infusion room, tell them what you’ve learned from this journey and how inspiring his messages have been.

And I thought, yes, this is it! I want to share with fellow cancer patients what I have learned from his teachings, and more importantly, to experience this stage in my cancer journey to the fullest, rather than in a state of disappointment or guilt that I was somehow falling short. Falling short? Who can fall short when they are standing tall to stay alive?

The saint’s most important mantra is “faith and patience.” But this message of faith and patience is deeply internal, profoundly personal. It says that whatever life offers up, hold fast and do not despair. Believe in the power of faith to show you the way, to give you the strength to face each and every challenge, and to turn suffering into compassion.  He always urged people to look into their hearts, and to help the next person over.

And that is what Michael talks about in his lecture, “Putting on the Gold Coat.” In certain prisons where everyone is there for life, a younger prisoner may put on the “gold coat” to help an older prisoner debilitated by age and/or illness. Helping him/her out is not a matter of getting a better parole or a shorter sentence, but rather the fulfillment that comes from just lending a helping hand and seeing that one can make a difference in the simplest of ways to another human being.

I have cancer, you have cancer, but together we can make a difference. Together we comfort and console, we inspire and inform, we make an impact because it comes from the heart.

How has your work in African art & culture impacted your healing process?

Polly: Our work in Africa has resonated very closely with my healing process because there are such meaningful approaches to healing in Africa. For example, when a person is sick in an African community, they are not alone. A community heals together. There is a term in our field of study called communitas, which refers to the solidarity of a group that comes together around each individual’s challenges. And in African cultures where we have worked, art and healing are so intertwined. There is no separation; for me, art is healing, and healing is art.

What I try to bring to my teaching and curating is that the arts are a terrain of exploration, experimentation, and self-reflection. They offer an opportunity to navigate the deepest, most profound parts of our beings, of our consciousness, and they give us a chance to self-express and to share that with the world. There is a wonderful opportunity to think about how we can use art more in therapy and healing practices, as the Simms/Mann Center has been doing. And the amazing group with whom I work through the Komen LA Affiliate to bring greater understanding to metastatic breast cancer (MBC) has been doing that as well, with art displays of works made by thrivers at our annual MBC conferences and at the most recent Race for the Cure. These creative initiatives demonstrate the power of art as an emotional outlet and a powerful coping mechanism.

Can you give an example of an art-related project that has been integral to your journey of teaching and healing?

Polly: I have an exercise that I often do with my students that emanates from my doctoral work in the Congo among Luba peoples. A lukasa is a memory board that Luba use to narrate their histories. It’s a beautiful wooden board covered with colorful beads, and the beads stand for all the possible points of memory in the past. Court historians hold the board and run their fingertips across the beads as they recount histories about Luba kingship and other matters of consequence. So, in my grad seminar called “Performing Memory” and my undergrad class “Body Politics,” we have a midterm assignment in which I ask students to make a memory board.

The students are not expected to replicate a lukasa precisely, but to create a mnemonic device of their own invention that informs their life history, and to use the object to perform a recitation, narrative, dance, video, or yoga practice – whatever they choose. This project is the most cathartic experience. It is remarkable how deep it goes and how creating this object allows students to share salient memories that helped to shape and form who they are, or how they self-identify in the moment.  One of the things my husband and I both teach is that memory is always in the present. As much as it seems to be in the past, remembering is always an act of performance right now. Memory is forever changing because it’s being filtered through the eyes of today and the experiences of now and who we are at any given moment.

In a sense, I see my whole cancer journey as a kind of a lukasa memory board, with byways, routes, and passages that have led to different levels of understanding and insight and reimagining. And the beads on my conceptual memory board include Michael and all of you at the Simms/Mann Center that I’ve been so fortunate to know: my brilliant and devoted doctor, Olga Olevsky and her remarkable care team, and all the phenomenal nurses and other doctors who have worked with her to save my life many times over these past eight years. My memory board also honors all the family members, friends, students, and colleagues who have surrounded us with love, as well as the teachings that we’ve been exposed to in diverse cultures, including spiritual traditions and healing practices of people around the world. All of these connections have been incredibly meaningful and are what have made this journey so enlightening, truly strengthening, and utterly transformative.

 

This interview is dedicated with greatest love to my husband Al, and our children and grandchildren.

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To witness the reciprocal nature of sharing wisdom, and how Polly’s knowledge and scholarship about Luba people leaves its echoes in Michael’s work, listen to his Insights lecture “Restringing the Beads of Your Own Story”

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The Simms/Mann – UCLA Center for Integrative Oncology depends on voluntary contributions from patients, their families and other friends of the Center to support its many programs offered without fees. We would be immensely grateful, if you would be willing to make an online donation.

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This interview was conducted by Alexia Holovatyk, pre-doctoral psychology intern.

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