National Brain Tumor Society Advocate and GBM patient, Adam Hayden, talks hope, clinical trials, and survivorship with neuroscientist and author Barbara Lipska. The following has been edited for length, format, and clarity. A full-length version of his reflections on his conversation with Dr. Lipska can be found, here.
Barbara Lipska, PhD, director of the Human Brain Collection Core at the National Institute of Mental Health (NIMH) — part of the National Institutes of Health (NIH) — 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 brain cancer.
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. In this post, I summarize themes from our conversation, which emerge from her memoir, which I recently spent time reviewing.
‘We Have Nothing to Lose by Being Optimistic’
Lipska displays a robust optimism indicative of her strong-willed and competitive personality, referring to her cancer experience as a “bump in the road,” with a sense of blase unflappability. In our conversation, she made clear her desire to bring hope to others. 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.” 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 some cases, curable.
Treatment, Trials, and Quality of Life
Lipska’s brain cancer — melanoma that spread, or metastasized, to the brain — presented at one time with as many as 18 small tumors concentrated in her prefrontal cortex, the seat of personality regulation, among other vital functions. The tumors were first found in 2015, after a sudden episode in which, while working at her computer, her right hand suddenly “disappeared” from her perception.
After initial surgery, her treatment consisted of, first, targeted radiotherapy aimed at damaging the small tumors before her treating physician administered an immunotherapy agent to help her body’s immune system seek and destroy the damaged and vulnerable tumor cells. The immunotherapy protocol was available to Lipska through her enrollment in a clinical trial.
In her book, Lipska pays particular attention to the disturbances in her personality driven by inflammation as a consequence of the tumors and treatment — changes she didn’t even realize were happening to her until the inflammation began to subside and her brain started trending toward normal functionality.
“I was sure that everyone around me was acting wrongly,” Lipska told The Guardian newspaper in a recent interview. “I thought they were conspiring against me, being mean.” She added, “The most awful thing was that I hurt the people I love. As I regained my sanity, started coming back to life, I saw that I had no insight into my behaviour, I couldn’t recall the emotions.”
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.
Survivorship & Combating Stigma
Lipska 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 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.
Lipska went on to decry 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.”
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 a biological explanation. Later in the memoir she asserts, “I insisted on being myself despite cancer and radiation.” The joy of Lipska’s tale is the interplay between empiricism and physiology and more abstract notions of self, identity, hope, will, and optimism.
I encourage anyone interested in hearing more of her story to spend time The Neuroscientist Who Lost Her Mind. 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 greater brain tumor community.
Adam Hayden (@adamhayden) is a philosopher, blogger, and speaker. In June 2016, Adam was diagnosed with glioblastoma (GBM). He is an active NBTS advocate. Adam documents his journey as a graduate trained philosopher living with glioblastoma at his personal blog, www.glioblastology.com. He lives with his wife and three young children, aged six, four, and two years old, in Indianapolis, IN, USA. He and his wife are hosting the inaugural Tumor Takedown Tailgate fundraiser to benefit the National Brain Tumor Society on April 22 from 3 to 7 p.m. at Revery, 299 W. Main St., Greenwood, IN. Admission is $40 and includes a barbecue dinner and two drink tickets. Tickets can be purchased online, here.