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Lipska notes that, "Deep inside my brain, a full-scale war had erupted. The tumors that had been radiated were shedding dead cells and creating waste and dead tissue. Throughout my brain, the tissues were inflamed and swollen from the metastasis and the double assault of radiation and immunotherapy. What’s more, I had new tumors—more than a dozen. My blood-brain barrier…..had become disrupted.....and was leaking fluid. The fluids were pooling in my brain, irritating the tissue and causing it to swell." In the field of psychiatry, which is rife with mysteries, fugue states are, perhaps fittingly, totally elusive. They are rare, extreme escapes from the self that last as little as a few hours to years. But they do happen, and they seem to be triggered by common life stressors—financial woes, work problems, relationship difficulties, and the like. The mystery writer Agatha Christie was diagnosed with a dissociative fugue in 1926 after her mother’s death and upon discovering her husband had a lover. And that's not even the worst part. OK, you enter a clinical trial because you believe it will benefit you. Clinical trials are meticulously designed and exclusion criteria exist in part to empower a specific intended analysis. By entering the trial under false circumstances, you are jeopardizing the results and potentially the possibility of this drug getting to market. When you had your brain swelling, that very serious adverse event is thoroughly reported. When reviewed by the FDA, such a serious side effect may cause them to decide not to proceed with further trials of this drug. You are potentially sabotaging the release of this drug, and its potential benefit to many patients, by falsifying your information. Also, just considering local consequences, you could have taken the clinical trial spot for someone who could have actually benefitted from it. I mean, I get it, the author was desperate at this point, eager for anything that would help. But, bottom line, it was a very selfish decision.
Barbara Lipska is a neuroscientist specialising in schizophrenia who had previously survived breast cancer and melanoma. In 2015, diagnosed with brain cancer she grabbed the opportunity to participate in a trial targeting her type of cancer. Surviving cancer, the debilitating effects of the treatment and temporary mental illness, left her with firsthand experience of life on the other side, which she has passed on in her writing. It also left her more aware of life, with a deeper compassion towards others and a fear that her insanity might return. Lipska immediately thought 'brain tumor' - and an MRI confirmed her worst fears. The brain scan revealed three tumors in the scientist's head, one of which was bleeding. becoming irrationally furious at Amtrak when her train was delayed, and talking about it for days, to everyone in sight. All we think, feel and dream, how we move, if we move, everything that makes us who we are, comes from the brain. We are the brain. So what happens when the brain fails? What happens when we lose our mind? After successful surgery to remove the raisin-sized cancerous growth that was bleeding, Lipska received targeted radiation to the other tumours. Only after this could such treatments as immunotherapy (which empowers the immune system to recognize and destroy cancer cells) and “targeted” therapy (aimed at specific molecules within cancer cells) be tried. In spite of an iron will and a high tolerance for pain and discomfort, Lipska confronted tumours that had minds of their own. They kept popping up “like weeds in a garden”. At one point, she had eighteen simultaneously. Many of us might not be able (or even want) to persist in the face of considerable suffering as Lipska did. However, she attributes at least some of her endurance to her long-time training and competing as a marathoner and tri-athlete. Lipska is still not out of the woods; however, the mostly new treatments she underwent have prolonged a life that she obviously values, even if that life continues to pose challenges.In the tradition of My Stroke of Insight and Brain on Fire, this powerful memoir recounts Barbara Lipska's deadly brain cancer and explains its unforgettable lessons about the brain and mind. Lipska is frustrated by sounds that are interpreted as too loud and shrill, an environment which should be familiar has no discernible landmarks she can use, people who don't seem to understand that by God, she has been incredibly wronged by a train running late. She has no idea that one shouldn't urinate on oneself in public, or otherwise; one shouldn't jog miles and miles with the gore of hair dye running down ones face.
https://www.theguardian.com/lifeandstyle/2018/mar/30/i-was-a-caricature-of-my-worst-traits-how-brain-cancer-can-affect-the-mind 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.Lipska's expertise helped her understand her symptoms when she developed metastatic brain cancer in 2015, at the age of 63. Lipska - who had previously been treated for breast cancer and melanoma (skin cancer) - realized something was wrong when she was preparing for 2015's 'Winter Conference on Brain Research' in Montana. Reaching out to turn on her computer, Lipska noticed that her hand 'disappeared' when she moved it to the right and 'reappeared' when she moved it to the left. Lipska's family was disturbed and worried by the changes in her demeanor, but Barbara herself didn't realize anything was wrong - even when her conduct became increasingly bizarre. Examples of changes in Barbara's behavior during cancer treatment include: Kasia doesn't tell me until much later, but it deeply pained her to see me so disoriented, so altered, from the sharp-minded and accomplished person I used to be: her sharp-witted mother, the one who taught her math and logic as well as the importance of honesty and how to enjoy her life. She doesn't want our roles to change. She doesn't want to be a physician examining my symptoms and observing my strange new behaviors in an attempt to understand what's wrong. She wants her loving, fun, competent mama. Not this confused, angry, self-absorbed impostor.
Personalitatea fiecărui om este rezultatul unor interacțiuni complexe între factori nenumărați care influențează funcționarea creierului." It made for a detached read. Her access to medical facilities that most people in the world would never have access to and the way she expected that access was revolting, and she could not believe she had to wait for things. A whole hour in a waiting room!
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’ She was angry, cranky, demanding, insistent, unreasonable, intolerant, and sometimes a danger to herself and others. She made bad decisions. One day, she tried to walk home alone from a supermarket. She got lost, urinating on herself, eventually hitching a ride home to a house she couldn’t recognize or point out to the driver. She was mean to her beloved grandkids, and rude to medical personnel who tried to help her. She saw menace in situations that were non-threatening, and missed the real dangers of insisting on doing the things she’d always done, like driving. After Lipska was diagnosed with brain cancer in 2015, she became someone else—and not someone she liked.
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