Beyond The Clinic: Living Well With Melanoma

In 2010, Mary Elizabeth Williams was diagnosed with metastatic melanoma. The following year, she was offered the opportunity to participate in a Phase 1 immunotherapy clinical trial. She wrote about that experience in A Series of Catastrophes and Miracles: A True Story of Love, Science, and Cancer. In this episode, Mary Elizabeth shares her story and insights into her journey as a clinical trial participant. Williams says she was in a place of desperate and deep panic, but she remembers having a conversation with someone who said, "This doesn't have to be your last resort. This can be our first resort for you." That perspective-changing conversation began her belief in the special relationship between hope and science.

About our guest, Mary Elizabeth Williams

Mary Elizabeth Williams is a metastatic melanoma survivor, clinical trial veteran, and the author of "A Series of Catastrophes and Miracles: A True Story of Love, Science, and Cancer." She has written for the LA Times, the Guardian, Health, and other publications. In 2021, her New York Times essay was adapted for the second season of Amazon Prime's "Modern Love." She has spoken for ASCO, PRIM&R, Bristol Meyers Squibb, DIA, and is the 2020 AMWA Walter Alvarez Award winner. She is currently a doctoral student of Medical Humanities at Drew University, where she recently completed her conflict resolution certification.

While being diagnosed with cancer alone can put a person under tremendous amounts of mental and emotional stress, the additional burden of outrageously expensive medical care only adds to the strain. Cancer treatment requires more than medicine — families need a roof over their heads and food on their tables to survive. The dramatic rise in the cost of cancer treatments has now given rise to what is being called financial toxicity.

On this episode, Liz Geisel, Director of Program Delivery for Family Reach, discusses the psychological stress related to financial toxicity and the role of Financial Navigators who help families discuss their concerns and guide them to community resources.

About our Guest, Elizabeth Geisel, MSW

Elizabeth Geisel, MSW, is the Director of Program Delivery for Family Reach, where she leads trauma-informed trainings and oversees the team responsible for providing financial support to families facing cancer. Elizabeth has dedicated the last twenty years to the field of social work, specializing in healthcare, mental health, and substance abuse. Her clinical approach focuses on trauma-informed practices, harm reduction, and building collaborative partnerships with patients. Before Family Reach, she worked at several leading Boston-based healthcare organizations, including the Sidney Borum Health Center (now part of Fenway Health), the Institute for Health and Recovery, and Boston Medical Center.

A growing discipline, palliative care medicine remains underutilized. Studies suggest that patients and providers commonly confuse palliative care with end-of-life care.

In this episode, Dr. Liu is joined by Dr. Sunita Puri, Program Director of the Hospice and Palliative Medicine Fellowship at the University of Massachusetts Medical Center & Chan School of Medicine and author of That Good Night: Life and Medicine in the Eleventh Hour. During their discussion, Dr. Puri explains how fears related to misconceptions about palliative care can rob patients of their opportunity to engage in important conversations about living with chronic disease. As in her book, Dr. Puri uses stories to illustrate that palliative medicine moves its focus away from cures – focusing instead on questions regarding quality of life - about symptom management, hope, and what a ‘miracle’ might really mean.

About our Guest, Sunita Puri, M.D.

Dr. Sunita Puri is the Program Director of the Hospice and Palliative Medicine Fellowship at the University of Massachusetts Medical Center & Chan School of Medicine, where she is also an associate professor of clinical medicine. A graduate of Yale University, she completed medical school and residency training in internal medicine at the University of California San Francisco followed by fellowship training in palliative medicine at Stanford. She is the author of That Good Night: Life and Medicine in the Eleventh Hour, a critically acclaimed literary memoir examining her journey to the practice of palliative medicine, and her quest to help patients and families redefine what it means to live and die well in the face of serious illness. She is the recipient of a Rhodes Scholarship and a Paul and Daisy Soros Fellowship for New Americans. Her writing and book have been featured in the New York Times, the Los Angeles Times, Slate, JAMA, the Atlantic, NPR, India Today, the Asian Age, the Oncology Times, and, forthcoming, the New Yorker.

In 2019, the Guardian made a mini-documentary of her work in palliative medicine which has been viewed nearly 3 million times. She has been interviewed on the PBS Cristian Amanpour show, at the Commonwealth Club in San Francisco, ZDogg MD’s show, and numerous podcasts. In 2018, she was awarded the Etz Chaim Tree of Life Award from the USC School of Medicine, awarded annually to a member of the faculty who, in the eyes of the campus community, models and provides humanistic and compassionate care. She has taught medical memoir and literary nonfiction to medical students and residents, and has delivered talks about palliative medicine, the centrality of narrative and storytelling in medicine, and physician well-being in forums around the world.

ABOUT THE BOOK

Interweaving evocative stories of Puri’s family and the patients she cares for, That Good Night is a stunning meditation on impermanence and the role of medicine in helping us to live and die well, arming readers with information that will transform how we communicate with our doctors about what matters most to us.

Last year, over 197,000 Americans were diagnosed with melanoma—and we know they won’t go through that experience alone because there will be a caregiver, usually a family member or close friend, at their side. Becoming a caregiver is often unexpected and life-changing. To talk about the benefits of caregiving, the types of support that are most effective, and essential communication skills for caregivers, Melissa Wilson, PA-C, MPAS, and AIM's Ask a Medical Expert, sits down with Allison J. Applebaum, Ph.D., Director of the Caregivers Clinic at Memorial Sloan Kettering Cancer Center.

Discussion topics include what should a melanoma caregiver expect, how to maximize the potential benefits of caregiving, what types of support are most effective, and communication skills for caregivers.

Receiving a melanoma diagnosis can be an overwhelming and life-altering experience. The emotional rollercoaster that follows can be intense, as individuals navigate through fear, anxiety, and uncertainty. Coping with these emotions is crucial for maintaining mental well-being during the treatment process.

Fear and anxiety is often the first emotion that arises after a melanoma diagnosis. Fear of the unknown, fear of pain, and fear of death can consume one's thoughts. It is important to acknowledge these fears and seek support from loved ones or professional counselors who can provide reassurance and guidance.

Uncertainty about the future is another common emotion experienced after a melanoma diagnosis. Thoughts about how it will impact relationships, career prospects, and overall quality of life may arise. 

In this episode, guest Emily A. Meier, PH.D. talks to Melissa Wilson, PA-C, MPAS about how to deal with the emotional rollercoaster following a melanoma diagnosis—acknowledging fears, managing anxiety through stress-reducing techniques, seeking support from loved ones or professionals when needed, and addressing uncertainties. By actively addressing these emotions head-on, individuals can better cope with their diagnosis while maintaining their mental well-being throughout their treatment journey.

GUEST:
Emily A. Meier, Ph.D. Associate Clinical Professor of Psychiatry
Licensed Psychologist PSY25266
Co-Director for Psycho-Oncology Training and Education
Psychiatry & Psychosocial Services
UC San Diego Moores Cancer Center

The test results are back. You’ve talked to the doctor and learned you have melanoma.

Whether it’s your first or fifth melanoma diagnosis, your reaction to a new melanoma diagnosis often comes down to a single question: What do I do now? To help you navigate your next steps after a new melanoma diagnosis, Melissa Wilson, PA-C, MPAS, and AIM's Ask a Medical Expert sits down with Yana Najjar, MD, a medical oncologist specializing in the treatment of melanoma at UPMC.

About our Guest: Yana Najjar, MD, is an assistant professor at the University of Pittsburgh School of Medicine a medical oncologist specializing in the treatment of melanoma. Board-certified in internal medicine and medical oncology and board eligible in both hematology and oncology, she received her medical degree from the American University of Beirut in Lebanon. Dr. Najjar completed her internal medicine residency at the Cleveland Clinic in Ohio and her hematology/oncology fellowship at UPMC.

Dr. Najjar's research interests include immunotherapy, translational research, tumor immunology, and remodeling the tumor microenvironment. Specifically, she is interested in immunotherapy in advanced melanoma and its impact on the tumor microenvironment and the peripheral immune system.

People living with melanoma often benefit from practical help and advice from others who have lived through similar situations. Support groups bring people together and provide a safe forum for exchanging perspectives, sharing concerns, and gaining confidence to face the future. Of course, each of us has to find a way of dealing with a melanoma cancer diagnosis. None will take us back to where we were before, but the key is finding the one that lets you live the best, most positive life today and tomorrow. In this episode, two melanoma survivors who serve as volunteer mentors in AIM's Peer Connect program talk about finding meaning and empowerment while helping others.

Carrie Brophy

Carrie was diagnosed with Stage IA melanoma in 2020 and again in 2021. Over the past couple of years, she has had four early-stage tumors removed and says she has more skin biopsy scars than she can count. Carrie has joined a mole mapping study at Stanford University and is treated at CPMC in San Francisco.

Carrie lives with her husband, Tim, and six children in Sonoma, California, where she works part-time as a pediatric nurse. Carrie and Tim’s children are aged 8 – 20. She tries to be transparent with them about her treatment and uses this journey as an opportunity to teach sun safety.

Carrie’s Peer Connect experience began in early March 2022 when she requested a mentor. She indicated that she felt a lot of guilt from her many years in the sun and was looking for ways to cope and feel comfortable in her skin. Carrie was looking for someone who could genuinely be empathetic and would understand how she felt.

Carrie is a strong believer that by helping others, you will always help yourself!

Bob Polkinghorn 

Bob was diagnosed with Stage III melanoma in 2016 and has been treated by Dr. Adil Daud at the University of California, San Francisco.  He had all his lymph nodes removed from under one arm and was in a clinical trial testing Keytruda vs. placebo for five years, including one year of infusions.   

Bob lives with his wife, Kathy and dog, Lady, in Winters, CA.  They are both retired from the University of California and the public school system.  Bob and Kathy have five adult children and 17 grandchildren, including two great-grandchildren.  Their large family keeps them happy and on the move!  

Bob is actively involved in AIM at Melanoma and other support systems for melanoma patients and caregivers.  He co-coordinated the 2022 Northern CA Bay Area "Walk Against Melanoma" and plans to do so again in 2023.  He is also one of AIM's peer support "mentors" for newly diagnosed melanoma patients. For the past couple years, Bob has served as a "Consumer Reviewer" for the US Department of Defense's "Melanoma Research Program" reviewing cutting-edge grants from scientists nationwide.

Bob is a road cyclist, swimmer, hiker, and meditator. He has been a hospice volunteer for six years at the state prison.  He considers it one of his life's most engaging, healing experiences.  Bob is also an IRS-certified tax preparer who volunteers as part of a county team to provide free income tax preparation and e-filing to low-income families. Bob also serves as a member of his church's social justice and outreach team that provides a range of support to local families in need.  

Bob says melanoma had a profound life-changing experience in the most positive sense.  He would never wish melanoma on anyone - ever!  But everything he has experienced and everyone he’s met has made his life so much better and more meaningful. He feels blessed.

“There is nothing wrong with you for dying,” hospice physician B.J. Miller and journalist and caregiver Shoshana Berger write in A Beginner’s Guide to the End. “Our ultimate purpose here isn’t so much to help you die as it is to free up as much life as possible until you do.” An honest, surprising, and detail-oriented guide to the most universal of all experiences, A Beginner’s Guide to the End is “a book that every family should have, the equivalent of Dr. Spock but for this other phase of life” (New York Times bestselling author Dr. Abraham Verghese).

About Our Guest:

Dr. BJ Miller is a longtime hospice and palliative medicine physician and educator. He currently sees patients and families via telehealth through Mettle Health, a company he co-founded with the aim to provide personalized, holistic consultations for any patient or caregiver who needs help navigating the practical, emotional and existential issues that come with serious illness and disability.

BJ has given over 100 talks nationally, and internationally, on the topics of death, dying, palliative care and the intersection of healthcare with design. His 2015 TED Talk: “Not Whether But How” (aka “What Matters Most at the End of Life”), has been viewed over 11 million times and his work has also been the subject of multiple interviews and podcasts, including Oprah Winfrey, PBS, The New York Times, The California Sunday Magazine, GOOP, Krista Tippett, Tim Ferriss and the TED Radio Hour. His book, A Beginner’s Guide to the End, was co-authored with Shoshana Berger and published in 2019.

Guests Donna Thomson and Dr. Zachary White discuss their book The Unexpected Journey of Caring. Becoming a caregiver is one transformation that comes at us, requiring us to rethink everything we once knew. Everything changes—responsibilities, beliefs, hopes, expectations, and relationships. Caregiving is not just a role reserved for “saints”—eventually, everyone is drafted into the caregiver role. It’s not a role people medically train for; it’s a new type of relationship initiated by a loved one’s need for care. And it’s a role that cannot be quarantined to home because it infuses all aspects of our lives. Start reading The Unexpected Journey of Caring: The Transformation from Loved One to Caregiver now!

About our Guests

Donna Thomson is a caregiver, author, and activist. The mother of two grown children, one who has severe cerebral palsy and medical complexity, she also helped care for her mother who lived with dementia until she passed away in the summer of 2018 at the age of 96.

She is also the author of The Four Walls of My Freedom: Lessons I've Learned from a Life of Caregiving (McArthur and Co., 2010 and The House of Anansi Press, 2014), and blogs regularly at The Caregivers' Living Room. She is a board director of the Kids Brain Health Network and is a leader and instructor in family engagement in health research. She also teaches families how to advocate for care at The Advocacy School and at Huddol.com.

Dr. Zachary White Zachary began living, researching, and exploring the caregiver experience in 2002 during his mother's diagnosis with brain cancer. His research and teaching focus on helping people manage meaning and communicate life experiences amidst high levels of uncertainty and stress. He is the founder of the award-winning blog and resource for caregivers called "The Unprepared Caregiver."

He earned his Ph.D. in communication from Purdue University and is an Associate Professor in the James L. Knight School of Communication at Queens University of Charlotte. He has researched a range of care experiences, including birth (parental NICU experiences), chronic caregiver experiences, and end-of-life caregiving (hospice care). His academic articles have been published in Management Communication Quarterly, Journal of Family Communication, Communication Research Reports, OMEGA: Journal of Death and Dying, Health Communication, and Volunteering and Communication: Studies from Multiple Contexts.

Our lives are filled with ups and downs, triumphs and tragedies, and success and stress. The question is not whether we will experience difficulty, challenge, or trauma; it is what we will do in response to such events and experiences.  In this episode, Dr. Richard Tedeschi joins us to discuss how people can grow in the aftermath of trauma and live great lives — filled with Posttraumatic Growth.

About Richard Glenn Tedeschi, Ph.D.