Director of the NIMH brain bank Barbara Lipska, PhD shares her harrowing journey through recurrent melanoma, this time in her brain and lungs. Already a breast cancer and melanoma survivor, Dr. Lipska is incredibly fit physically, has a loving, stable home live, and thrives in her new position as curator of human brain specimens that are sent to various research centers around the world in order to advance the study of neuroscience. When an abnormality in the lower right quadrant of her eye sends her to her family doctor, the eventual diagnosis she receives is that she has brain tumors, lots of them. When they go in and operate, they discover that her melanoma has returned and has metastasized to her brain, which is oftentimes a death sentence. She is in a unique position to understand how damage to specific areas of the brain – areas where her tumors reside – are correlated to mental health disorders. But Dr. Lipska is undaunted, and this is one determined grandmother. She goes from doctor to doctor to try anything and everything – focused radiation, immunotherapy, and experimental therapies included. But the toll the disease and those therapies took on her brain began to show and slowly, Dr. Lipska’s personality begins to change. She is now easily irritated, obsessed with minute details, combative, paranoid, and hysterical. The worst part is that as she experiences these new symptoms, she had no ability to recognize the shift in her own personality. Her ability to self assess was wiped away. In short, she assumed the symptoms that many dementia patients experience as they begin the slow decline into their diseases.
After a heroic battle, Dr. Lipska underwent an incredible recovery. Her personality slowly returned, her tumors shrank. And yet she still remembered the times when she felt nothing but panic, annoyance, and fear.
While incredibly sad and frustrating for those of us who have spent many years studying the human brain, dementia, and mental disorders in general, this story shows how much one woman’s incredible determination to beat cancer got her through almost certain death. This story is heartbreaking on one hand because we still feel so far away from a clear understanding of brain cancer and mental health. While the doctors treat the major issue, in this case cancer, they seem oblivious to the various side effects a patient and their family struggle through while battling their disease, usually alone. Mental disorders are still treated as something shameful, and patients who undergo such major treatments are often left to fend for themselves when it comes to depression, anxiety, and fear. Due to our litigious society, doctors are too fearful and often pick only the most contrastive approaches when more aggressive treatments are warranted. Cancer doctors address only the tumors and many times ignore the side effects their patients must endure to receive treatment. If it wasn’t for Dr. Lipska’s unwavering convictions, her ability to do her own research and seek out the very best doctors, her persuasiveness and at times outright deceitfulness, she probably would not have received all the therapies that helped her overcome her disease.
If this book teaches us anything, it’s to be your own best advocate, no matter what. Do your own research. Get second opinions. Don’t ever give up.
Amazon link is here.