This is the graphic that accompanied an article in the New York Times two years years ago, on March 12, 2016, authored by Barbara K. Lipska, Ph.D., Director of the Human Brain Bank at the National Institute of Mental Health. You’ll note the fragmented, disjointed imagery, with a black glove representing her right hand. The basis for this is described by Dr. Lipska in the article as follows:
“In the first days of 2015, I was sitting at my desk when something freakish happened. I extended my arm to turn on the computer, and to my astonishment realized that my right hand disappeared when I moved it to the right lower quadrant of the keyboard. I tried again, and the same thing happened: The hand disappeared completely as if it were cut off at the wrist. It felt like a magic trick — mesmerizing, and totally inexplicable. Stricken with fear, I kept trying to find my right hand, but it was gone …
My colleagues and I had a meeting scheduled to review our new data on the molecular composition of schizophrenia patients’ frontal cortex, a brain region that shapes who we are — our thoughts, emotions, memories. But I couldn’t focus on the meeting because the other scientists’ faces kept vanishing. Thoughts about a brain tumor crept quietly into my consciousness again, then screamed for attention. The M.R.I. scan later that day showed that I indeed had a small brain tumor that was bleeding and blocking my right visual field. I was told it was metastatic melanoma and given what was, in effect, a death sentence. I was a scientist, a triathlete, a wife, mother and grandmother. Then one day my hand vanished, and it was over … Almost right away, I had brain surgery, which removed the tumor and the blood. I quickly regained my vision.”
But there is more to the story. Much more, as detailed in the new book just published under the same title as the New York Times article.
In the book we learn that the tumor Dr. Lipska had was in her primary visual cortex. And indeed, after surgery to remove the tumor, her visual field loss resolved. However her tumors were of the metastatic melanoma variety, and therefore invaded other parts of her brain as well. After deciding to enroll in an experimental immunotherapy protocol, Dr. Lipska received a call from her oncologist that several new tumors had appeared. She had a gut wrenching decision whether to advise the immunotherapy team – through which she had received clearance – that they had missed these small new tumors. Had she related this information, she would have been disqualified from the clinical trial. Dr. Lipska was convinced that the experimental immunotherapy was her best chance to stay alive, and so she confesses to intentionally concealing this information from the experimenters so that she would still be eligible for the trial.
Other insights in the book abound. The issues that Dr. Lipska relates, secondary to the inflammatory cascades in specific parts of her brain – frontotemporal as well as parietal – significantly compromise her behavior and judgement. As you read her memoir you’ll be alarmed that she continued to drive all this time, describing many near misses. It will give you pause to reflect on whether some of the people on the road who exercise questionable judgment might be experiencing brain issues that they either aren’t aware of, or are in denial about. They take not only their own lives into their hands, but the safety and lives of others.
The experimental immunotherapy protocol worked wonders. Look at the reduction in swelling and shrinkage of the tumors from the pre and post scans as documented above. But not all this was attributable solely to the immunotherapy, as her treatment also incorporated stereotactic radiosurgery (SRS) and CyberKnife techniques. The problem is that although these procedures work synergistically with immunotherapy to destroy tumors, they also result in necrosis and destroy surrounding healthy tissue. Fourteen months after receiving a series of radiation treatments, at the end of August 2016, as Dr. Lipska was getting ready for a hiking trip in New Hampshire, she relates:
“I notice a blind spot at the top of the visual field of my left eye. At first, I don’t pay it much attention. Maybe it’s a slight cataract, I think, and I try to ignore it into oblivion. But within a few days the vision in my left eye deteriorates as rapidly as if a curtain is belong lowered from the top to the bottom of my eye. From day to day it gets worse and worse. My doctor orders an emergency MRI of my brain and eyeballs. The scans confirm what we suspected: the problem is not the eye itself but my optic nerve. Aftereffects of radiation to the frontal cortical tumor, which was very close to my left optic nerve, have destroyed the nerve. I am diagnosed with irreversible optic neuropathy, total blindness in my left eye. There is no cure. I will have to learn to live with one eye …
… Back home in Virginia I have to relearn so much. How to run without stumbling – many times I return from my daily run with bloody knees and palms. How to cycle – I add a side mirror to my bike so I won’t crash into objects on my left. How to type and read in my new off-center world. How to drive my car … I continue to worry about my mind. My brain will never be as it was before.”
The book does end on a positive note, with a message of hope in its epilogue. After all, it’s subtitle is “My Tale of Madness and Recovery“. But I won’t spoil the ending for you.