‘I was a monster’: Mental health scientist describes her own delusions
Three years ago, Dr Barbara Lipska was probably going to die, but more importantly, she was convinced that the pizza place nearby was trying to rip off and sicken its customers by lacing their pies with plastic.
As a neuroscientist and the director of the human brain collection core at the National Institutes of Health, Dr Lipska studies mentally ill brains for a living, but when her own mind turned against her, she missed all the signs.
After the mother-of-two was diagnosed with melanoma that had spread to her brain and enrolled in an immunotherapy clinical trial, Dr Lipska started to act out – but she didn’t notice at the time.
When she reached a breaking point, a brain scan revealed that the same drug that has kept her alive had caused massive swelling in her brain, and, as a result, she was having delusions and lashing out at loved ones.
Dr Barbara Lipska experienced the kind of mental illness she has spent her life studying due to immunotherapy cancer treatment, but she could not recognize her own strange behavior
There are few people in the world that know more about schizophrenia than Dr Lipska.
At 66, she has spent the majority of her life studying the brains of people who suffered the mental illness, and modelling its effects in animals.
She knew the disease inside and out, in the most literal sense, but as she learned in recent years, observing the appearance of mental illness from the outside or how it operates in the brain is a world apart from experiencing it yourself.
That lesson she only learned in recent years, and documented in her book, The Neuroscientist Who Lost Her Mind.
Her descent into madness began with a disappearing hand.
As she sat at the breakfast table at her home in suburban Virginia, Dr Lipska could watch her hand disappear and reappear as she moved it to different corners of her vision.
She knew brains well enough to know what this might indicate: a brain tumor in her occipital lobe, which was entirely possible, since both the breast cancer and melanoma she had beat years prior were liable to metastasize in her brain.
A trip to the doctor confirmed her own diagnosis. The melanoma had returned, this time to her brain.
Despite medical advancements, the non-profit organization Aim at Melanoma predicts that more than 91,000 people will die of the disease in the US this year, and another 9,320 will die of it.
At stage 4, Dr Lipska’s cancer had spread into her brain. The prognosis was dark: her doctors thought she had about four months to live.
Immediately she scheduled to have a laser surgery to very precisely remove the tumors, but knew that that didn’t mean that the cancer could not grow again.
Dr Lipska and her entire medically-savvy family went to work searching for something more drastic, and they found it in a clinical trial for a new immunotherapy melanoma treatment.
She got her spot in the trial, and started undergoing infusions of checkpoint inhibitors in April of 2015 – dangerously near the end of the four month survival period Dr Lipska had been given.
Scans of Dr Lipska’s brain revealed severe swelling, especially in her frontal cortex, which was causing her to lose touch with reality, have dramatic mood swings, and be unable to notice
Checkpoint inhibitors work against cancer in two important ways.
When the body detects cancer, it the immune system starts fighting, hard. But all that fighting causes inflammation, which also poses a threat to health. So the immune system eventually quiets back down, choosing to spare us of inflammation rather than fight cancer.
Cancer also learns our immune system’s plan of attack, and morphs to disguise itself from our tumor-fighting T-cells.
So if cancer cells learn how to camouflage themselves, then checkpoint inhibitors effectively throw a bright red target on their backs.
At the same time, ‘immunotherapy is designed to rev up the immune system to fight the melanoma,’ Dr Lipska explains.
I was yelling at my beloved grandsons [for being] little boys, running around and sometimes bumping into me…I was a monster
It’s a powerful one-two-punch, and not without its side effects.
Dr Lipska was one of the first people to receive her particular kind of checkpoint-inhibitor immunotherapy and, like many since and before her, the treatment attacked her body too, setting of a painful itchy rash all over her body.
‘People respond differently to [immunotherapy], like any kind of medication. Some do not respond at all, or only a little,’ says Dr Lipska, so, uncomfortable though it was, she was not surprised by the rash.
A month went by, and she carried on working, making trips to the doctor and trying to keep her mind off the cancer that was encroaching on her body by doing things she loved like visiting her daughter and grandsons in New Haven, Connecticut.
When she arrived after a painstaking train trip, that was all Dr Lipska could talk about.
She was agitated, edgy and taking it out on her family.
‘I was yelling at my beloved grandsons [for being] little boys, running around and sometimes bumping into me.
After Dr Lipska told her daughter there was plastic in her pizza, her husband finally took her to the emergency room, where doctors discovered her life-threatening brain swelling
‘That was not like me. I’m a loving grandma, I would never do that. But I was like a montster, yelling at them,’ Dr Lipska recalls.
The weeks ticked on, she kept getting her infusions and her sanity kept deteriorating.
At work, she struggled to do basic math, and seemed constantly enraged at her colleagues, but ‘I’m the boss, I’m in charge, so when I was snapping at my co-workers, they were like “okay, whatever,”‘ Dr Lipska says.
She was unable to recognize that she was ‘losing my memory and not able to find a way back home, and I was driving, and I really shouldn’t have been!’ she says, no horrified by the danger she put herself and others in.
We have made huge strides against cancer – with immunotherapy, from which I benefited – but mental illness [treatment] is still far behind
Once morning she returned from a run and was greeted with horror when her husband saw her.
As if it were the most normal way to start a day, Dr Lipska has slathered her hair with purple die, haphazardly covered it with a shower cap, thrown on her sneakers and a random top and just started running.
‘I was running around with this hair color dripping down a low-cut shirt, I was not properly dressed,’ she says.
The person Dr Lipska saw in the mirror appeared totally reasonable to her. It was Mirek, her husband, who she thought was being unreasonable.
‘It was getting worse. I started snapping at my husband or at my children on the phone. I was slipping slowly into this and it was becoming much more noticeable and alarming, but it was happening gradually,’ she says.
While she was suffering delusions and mood swings, Dr Lipska says found herself snapping at her husband, Mirek (right)
‘I was ill and my family pointed it out, but I couldn’t see or understand; I was walled off from reason,’ says Dr Lipska.
The last day of her immunotherapy treatment was also the first day Dr Lipska knew what was happening to her mind.
After the appointment, she and her husband decided to pick up pizza. Dr Lipska started to feel ill almost immediately afterwards.
‘I had a splitting headache and I threw up the pizza. I was convinced that the pizza was stuffed with plastic,’ she recalls.
On the phone with her daughter, Dr Lipska railed: ‘People who make pizza stuff it with plastic now to make money!’
That was the last straw. Her daughter, Kasia, knew without a doubt that these were not the thoughts of her logical, scientist mother. These were the words of someone who had lost a grip on reality.
I didn’t have a [functioning] frontal cortex at the time, so being a neurologist didn’t help me. I was amazed that with my knowledge of the brain and behaviors, I couldn’t put the puzzle together
Dr Lipska’s husband convinced her to go to the doctor. In scans, it looked like there were another 15 tumors in her brain.
But, ‘what was causing my behaviors was not the tumors themselves, but swelling and inflammation in my brain, due to my very strong, over-the-top response to immunotherapy,’ says Dr Lipska
She says that every cell in her brain was swollen. The inflammation that comes with the heightened immune response the immunotherapy was mounting was literally driving her mad – and threatening her life.
‘I’m lucky I was taken to the hospital and didn’t die because of the swelling,’ Dr Lipska says.
The swelling had especially affected her frontal cortex, the part of the brain responsible for higher reasoning, the kind that might have allowed her to recognize how rash her manic behavior was.
Dr Lipska explains: ‘One of the characteristics of mental illness is a lack of insight, so you don’t realize you’re ill because the parts of the brain responsible for it are gone or dysfunctional.
‘I didn’t have a [functioning] frontal cortex at the time, so being a neurologist didn’t help me. I was amazed that with my knowledge of the brain and behaviors, I couldn’t put the puzzle together.’
Doctors immediately started her on a heavy course of steroids and blasted Dr Lipska with radiation. Within month, the tumors were vanishing and her sanity was returning.
Because Dr Lipska’s frontal cortex (upper right) was swollen dysfunctional, she couldn’t understand her own abnormal behavior
The timing was serendipitous. The immunotherapy, in combination with the other treatments is likely why Dr Lipska is still alive today and she had just finished her course of it when it was on the brink of robbing her of her sanity, and perhaps her life.
‘In retrospect, it’s taught me about the brain, how people with mental illness feel from the inside, it’s isolated and pretty horrible,’ says Dr Lipska.
‘What this exp taught me also is that mental illness is a disease of the brain. I knew it from studying brain and mental disorders all my life, but having these tumors in my brain causing mental symptoms was additional proof.
‘Having the first-hand experience of being mentally ill, and it was terrifying, not only to me, but to my family,’ Dr Lipska says.
Nearly two in every five people will get cancer in their lifetimes, and, Dr Lipska emphasizes, one in five lives with a mental illness.
From her experience, she knows now that a mentally ill person ‘cannot be held accountable for those behaviors, and they cannot be ostracized because of their illness or feel guilty about it.’
Instead, Dr Lipska says that losing touch with reality ‘taught me tolerance and the urgency of working hard to discover a cure for mental illness.
‘We have made huge strides against cancer – with immunotherapy, from which I benefited – but mental illness [treatment] is still far behind.’