In 2016, the focus of my research was the psychotherapy relationship and how attachment dimensions influenced how patients and therapists developed an alliance, tolerated ruptures, and engaged in the process of treatment. I did not realize how important that attachment theory and research would eventually be. I felt healthy, was a runner, and thought my growing fatigue was related to turning 50 and running after my young children. I never thought I would have incurable cancer.
The fatigue got worse, and when I went in for blood work, they said I was anemic, hypercalcemic, and had elevated proteins in my blood. My primary care doctor thought it was my diet (vegetarian), but when I went home and googled my symptoms, I saw Multiple Myeloma pop-up, over and over. My primary care ignored my suggested diagnosis and failed to do the tests I needed (protein electrophoresis). The unhelpful care I received from my doctor only contributed to my growing distress. Instead of reading about my blood results and scheduling more testing, she sent me to an endocrinologist. During that visit, I suggested the tests I needed based on online research, he agreed, and the results revealed Multiple Myeloma.
The time after the diagnosis was a blur, given Multiple Myeloma (MM) is an incurable blood cancer, and I had two young children, ages 2 and 5. I immediately started taking Xanax to get through the initial weeks of PET scans, bone marrow biopsies, x-rays, and uncertainty about the best treatment protocol. My oncologist thought it was a good idea to tell me that I should expect multiple bone lesions; thankfully, he was wrong. I was devastated in a way that I cannot describe. It shook be to the core. I alternated between envisioning my last moments saying goodbye to my children, to screaming about the unfairness of having cancer when I never smoked one cigarette my entire life. The initial oncologist was not an expert on MM and suggested a protocol that was not the one supported by leading Myeloma experts. I had severe allergic reactions and consulted with everyone I could regarding the best treatment. I read every paper that was published on MM. Instead of listening to my concerns, the oncologist defended his protocol, and my painful side effects were ignored.
At night while everyone slept, I looked up all the research studies I could find to determine the best treatment for MM. The process often left me more confused about my current treatment regimen. I was losing hope. One early morning at 3am, exhausted, in tears, I decided to email the lead researcher on MM, Dr. Kenneth Anderson at Dana Farber. I was desperate, and I let him know I was a psychology professor and that I was confused by the outcome studies and my treatment protocol. At 7 am in the morning, Ken Anderson emailed me back. It was a short email. I will never forget his response, “Happy to help.” He asked me to send my records and all my scans, and we set up a phone call to talk.
Within a week, Ken Anderson spent an hour on the phone with me, answered all my questions, and acknowledged about the research findings; findings that were not definitive. He supported my decision to postpone a stem cell transplant based on my genetics. He also did not agree with the protocol my doctor had adamantly supported. I felt like I had finally been heard and understood. He ended the conversation with an odd question, “Do you have a college reimbursement plan at your university?” I said, “Yes, why do you ask?” He said, “Well, because you are going to see your kids graduate from college, of course.” It was an unexpected comment and immediately, my eyes filled with tears. It was the first sign of hope since the diagnosis. After that conversation, I decided to change doctors, developed a treatment plan based on my personal needs, and changed my research focus to include helping people living with incurable cancer.
Living with incurable cancer changed everything for me. It influenced my spirituality, meaning in life, purpose, style of parenting, relationships with my husband and family, and priorities. It changed the way I do therapy, my compassion for people, and my sense of self. It also shined light on important needs of cancer patients and the training of doctors on how to work with people who are living with incurable cancer. Doctors who need to work, not only on how to diagnose and treat patients, but also how to be a secure attachment by fostering an alliance, addressing ruptures, and empathizing with their needs (Kelly et al., 2019).
I hope to continue the legacy of Dr. Kenneth Anderson who showed so much compassion to me during a time when I could not feel the ground beneath my feet. He was the secure attachment that helped foster hope. He was able to listen, empathize, provide accurate information, and honestly admit that the research findings are not definitive. There is a lot we still do not know about MM. The interaction with him made me realize that cancer patients need the secure attachment with their oncologist and a significant amount of support when navigating this diagnosis (Holwerda et al., 2013).
In our paper, The Vital Signs of Incurable Cancer (Marmarosh et al., 2024), we discuss the psychological, social, and spiritual needs of people who are not dying and not “cancer free.” We also focus on the important role oncologists play in supporting patients, engaging in the assessment of their patients over time, and referring cancer patients so they can be supported during their cancer journey. A secure attachment can be an oncologist who provides both information and listens to the patient concerns, a social worker running a support group that fosters hope, a psychologist to address loneliness, depression or anxiety, or a spiritual leader who provides comfort through prayer, community, or services. Cancer patients themselves can also be a secure base for other cancer patients.
One of the groups that I am proud to be a part of is HealthTree, an online resource that provides cancer patients a “coach” who is also a cancer survivor. Unlike receiving support from a nurse, mental healthcare provider, volunteer, or friend, cancer patients can talk to a fellow cancer patient who is living through the experience of having incurable cancer. I am currently working with HealthTreee to study the impact that coaching has not only on the one newly diagnosed, but the cancer patient who is able to turn a tragic diagnosis into a purpose to help others, something very meaningful. The research we are doing also taps into the different needs of patients with different identities and how race, ethnicity, and gender often impact what patients are looking for from a coach (Hurtado et al., 2024). Our psychotherapy research reminds us of how important it can be to have a therapist who understands our identities and fosters safety (Ilagan & Heatherington, 2022).
I have learned, from my own experience, that it is not only important that cancer patients rely on a secure attachment when they need to, but that they also can become a secure attachment to others when they are in need. Helping others is another way of coping with cancer and can foster a sense of meaning and purpose. This is a new “way of life” for many people, and we need more research to understand the role of coaching for cancer patients.
I have been living with uncertainty for seven years, and my oncologist still says “it could be one week, one month, five years, twenty years….we just don’t know how long the cancer will stay in maintenance.” Living day-to-day with this uncertainty has been frightening. My treatments never end, and I have had to learn to accept the possibility of relapse at any time. What has helped me the most? Passionate and knowledgeable doctors, my faith, helping others, and being with the people who love me. What made the diagnosis the worst? Doctors who did not know how to read the blood results, who did not listen to my questions, who minimized my concerns, and who did not know the most recent research and treatments made my life miserable. The same principles of the psychotherapy relationship that I studied for years were playing out in my relationships with my doctors. Cancer patients need the same trust, safety, common goals, agreed on tasks, and bond with their cancer doctors. These doctors are “for life,” and they are the ones you see for blood work, medication management, testing, and monitoring. I see my oncologist every six weeks after seven years of treatment. Unlike my therapy relationships that end, my relationship with an oncologist is permanent.
Although many are calling incurable cancer “the new chronic condition,” they unintentionally miss a major difference between an illness that will always be chronic (e.g., diabetes) and an illness that can suddenly be resistant to treatment and lead to death (e.g., MM). Although incurable cancer can feel like a chronic condition when it is being managed, it also comes with the existential reality that your life can change at any time. Although this has been a painful journey, it has opened my eyes to the needs of people living with incurable cancer, and I hope inspired others to do the same.
References
Kelly, E. P., Tsilimigras, D. I., Hyer, J. M., & Pawlik, T. M. (2019). Understanding the use of attachment theory applied to the patient-provider relationship in cancer care: Recommendations for future research and clinical practice. Surgical Oncology, 31, 101-110. doi: 10.1016/j.suronc.2019.10.007.
Marmarosh, C., Vo, D., Abraham, M., & Rajput, A. (2024). The psychological vital signs of incurable cancer: Extending what we know about survivorship and terminal care. Academia Oncology.
Holwerda, N., Sanderman R., Pool, G., Hinnen, C., Langendijk, J. A., Bemelman, W. A., Hagedoorn, M., & Sprangers, M. A. G. (2013). Do patients trust their physician? The role of attachment style in the patient-physician relationship within one year after a cancer diagnosis. Acta Oncologica, 52(1), 110-117. doi: 10.3109/0284186X.2012.689856
Hurtado, J., Marmarosh, C., Perez, P., Sweeney, N., & Hyrden, J. (2024). The experience and needs of myeloma patients: Exploring race and ethnicity. Academia Oncology, 1. doi: 20935?AcadOnco6185
Ilagan, G. S., & Heatherington, L. (2022). Advancing the understanding of factors that influence client preferences for race and gender matching in psychotherapy. Counselling Psychology Quarterly, 35(3), 694-717.