[Note: An edited version of this post first appeared on blog.braintumor.org]
Barbara Lipska, PhD, director of the Human Brain Collection Core at the National Institute of Mental Health (NIMH), and author of the recently published memoir, The Neuroscientist Who Lost Her Mind: My Tale of Madness and Recovery, notes her fantastic medical team, devoted family, and stubborn optimism as important tools for treatment and recovery from metastatic melanoma, but as she says, with metastatic cancer, the journey is “never really over.”
Dr. Lipska’s book is available April 3, 2018.
Dr. Lipska telephoned me from her home near the National Institutes of Health (NIH) Bethesda campus, where Lipska spent much of her career.
Thick with her charming, Eastern European accent, Lipska remarked that she was only two years older than I am now when she immigrated to America from Poland. Having spent time recently reviewing Lipska’s book, connecting with her by phone felt more like catching up with a distant relative than interviewing the high profile scientist whose early career work established a novel theoretical model for the etiology and study of mental illness, namely schizophrenia. Her willingness to engage me, a new acquaintance, with humor, attention, and presence makes it no surprise that Lipska feels an obligation to help others, and she desires that her writing brings hope to readers. In this post, I summarize themes from our conversation, which emerge from her recent book. As someone living with glioblastoma (GBM), I took interest in Lipska’s experience with an immunotherapy trial to treat her metastatic brain cancer and her vivid descriptions of losing and recovering her sense of self through the ordeal.
Lipska’s neuroscientific training buttresses her claims of personal identity: “we are our brains,” she writes in her book, but it’s noteworthy that Lipska does not leave all matters of who she is up to biological explanation. She writes later in the memoir, “I insisted on being myself despite cancer and radiation.” The joy of reading a book like Lipska’s is the interplay between empiricism and physiology and more abstract notions of self, identity, hope, will, and optimism.
A bumpy road
I could not help but laugh during the early few minutes of our conversation when Lipska described her journey with metastatic melanoma–a journey that temporarily robbed her of her mind and nearly killed her, as a “bumpy road.” Lipska displays a robust optimism indicative of her strong-willed and competitive personality. She mentioned her desire to bring hope to readers. Drawing from my experience with scientists and researchers, a population that is often guarded about hope and optimism, in favor of evidence and conditional probabilities, I sensed there may be more, beneath the surface. I asked Dr. Lipska more pointedly if bringing hope was a primary reason for her writing.
Yes! She affirmed, “but not false hope,” she continued, “being optimistic is the only way to go.” Leaving time for a reflective pause, Dr. Lipska punctuated her sentiment, “we have nothing to lose by being optimistic.” Dr. Lipska remarked that science is evolving so quickly that diseases we once thought of having no treatment options are now manageable, and in many cases, curable.
Her scientific mindedness leaves plenty of room for human relationships. Dr. Lipska described her doctor as, “empathic and understanding.” She expressed thanks to her family, and identified one tactic, “engaging loved ones,” integral to enduring her difficult clinical trial protocol: targeted radiation and immunotherapy.
Treatment, trials, and quality of life
Lipska’s brain cancer–metastatic melanoma, presented at one time with as many as 18 small melanoma tumors in her brain, concentrated in her prefrontal cortex, the seat of personality regulation, among other vital functions. Targeted radiotherapy aims to damage the small tumors before her treating physician administers an immunotherapy agent to seek and destroy the damaged and vulnerable tumor cells. The immunotherapy protocol was available to Lipska after her enrollment in a clinical trial. The eligibility criteria required that enrollees exhibit no “live” tumors. Lipska underwent a final pre-enrollment MRI scan to ensure her brain was clear.
Lipska shared her images with a trusted physician outside of the trial. Her doctor found live tumors indicated on the MRI scan that were not identified by the clinical trial physician. Lipska faced a choice to divulge her sensitive information, which would render her ineligible for the trial, or proceed with the results of her second opinion undisclosed. The decision making process is best left to Lipska’s adept storytelling. But when I asked if she made the right choice, she wisely stated that, “everyone is clever in hindsight.”
I told Dr. Lipska, during my awake craniotomy, I was faced with the choice to pursue an aggressive resection, risking left-sided paralysis, or err on the side of caution, protecting much of my motor and sensory function, but leaving tumor in the margins of my surgical cavity. I explained to her that my decision to follow the more conservative tack was motivated by a desire to play with my young kids at home. Lipska emphasized the importance of quality of life in a patient’s medical care, and she raised an example: the use of steroids and the trade-off for negative impact on quality of life, most significantly mood swings. This example resonates with me and I trust many others in the brain tumor community.
I asked Lipska if she felt equipped with a clear survivorship plan following her treatment. She struggles with the ambiguity of survivorship. Even with the label, ‘survivor,’ she isn’t sure it is the correct term. Our conversation reflects the tone set in the Epilogue of her book: is it possible that those in the metastatic cancer community and others with tumors exhibiting high recurrence rates may never be survivors? Lipska displays careful and thoughtful consideration of these weighty issues that threaten the core of our relationships to our own bodies–will the cancer return? Will my body betray me? Dr. Lipska fears a return of, “a caricature of [herself],” affected by recurrent tumors invading and swelling in the complex networks of the brain, returning her to the brink of madness.
An attitude eerily similar to my own, and many others I meet with brain tumors and cancers of the central nervous system, we fear most for our families who are left with, “a deep, dark hole; an empty hole: black and grim,” following our deaths. Dr. Lipska decided to fill this hole preemptively with images, books, and memories with her husband, children, and grandchildren.
Lipska and I shared sighs and grunts, nonverbal signals mysteriously transmitted by telephone, to share a space of mutual understanding. We have permission to allow ourselves to enter this space because we are anchored by Lipska’s commitment to optimism. Recall, this is, “the only way to go.”
I concluded our conversation asking Lipska to speak about the importance of research funding allocated by the NIH. Lipska quickly calculated the social cost to America from poor handling of mental illness, her neuroscientific specialty, of approximately $200 billion. The NIMH is a very small institute within the NIH, yet 20% of Americans are impacted by mental illness. Lipska is quick to emphasize the disproportionate funding with respect to the affected population.
“Mental illness is a disorder of the brain,” Lipska states plainly. She decries the continued stigmatizing of mental illness, and she skillfully connects the taboo of mental illness to the taboo surrounding cancer, from earlier in her life in Poland, where cancer was a perceived weakness by the individual rather than a disease.
“People should never feel guilty that they are sick.”
I encourage readers to spend time with Lipska’s book. Her expertise, her vulnerability, desire to help others, to give hope, and to confront stigma offer benefits to any reader. These valuable lessons are made even more meaningful when given voice by another member of the brain tumor community.