[Note. Why I’m writing this book review. Plain and simple, Paul’s story resonated with me in so many ways. The book was given to me as a gift by my daughter in January, this too has special meaning.]
This book, for those of you not familiar with it, is a book about death and how death gives meaning to life. It is the new “darling” of The New York Times and NPR. It is written in a genre similar to The Last Lecture and Being Mortal. This isn’t a spoiler as it is on the book’s inside jacket cover, Paul Kalanithi, the author and a neurosurgeon, contracted lung cancer and died in March 2015 at the age of 36.
Many books resonate with me, but typically on just one or two levels. This book resonated with me on so many levels, with its intensity and articulation. With what so many others could learn from it (if they were so inclined), it feels worth sharing.
Level #1. Treatment therapies – On the personal side, his first line cancer defense was the drug Tarceva, a newer targeted medicine. This provided him a significant remission for several very good months. I was on that same medicine, three different times. First in mid-2007 where it was part of a chemo cocktail regime that also included Paclitaxel (4 months), then in late 2007 I began a new chemo cocktail that included daily 150 mg Tarceva pills and 11 Avastin infusions three weeks apart (8 months), and lastly beginning in Q2 2008, I began a Tarceva maintenance program of daily pills that ended on December 31, 2013 (5 plus years). Like me, Dr. Kalanithi debated, with himself and others, the use of Avastin in his treatment. I won’t provide a spoiler; you’ll have to read the book to find out what he decided.
Level #2. A life ripped apart – Dr. Kalanithi’s life was ripped apart. One day he was a neurosurgeon in his last year of residency at Stanford, the next he was a patient. Then, in remission, he was again a neurosurgeon, and then again he was a patient. The parallel for me is, one day I was at the top of my game in management consulting, the next I was a patient. Then, with no evidence of disease present, I was again back at the top of my game, next I was a patient. The author articulated his breakdowns, the same type of breakdowns I experienced. He expressed his sadness, not the sadness of dying, but the sadness of missing out on the future with his wife. For me, it was my wife and child. Maybe most important was his loss at being able to plan his future: if he had a few years to live, he would spend time with his family; if he had 10 years to live he would return to neurosurgery; if he had 20 years to live, he would split his time between neurosurgery and research; and if he had 40 years to live he would spend the first twenty in neurosurgery and research and the next twenty writing. But he didn’t know! On good days he would be in denial and think about the long term, on poor days he would wonder what he was doing with his good days. I have the same feelings. I want to think long term, I want to plan, I want to be normal, but then comes the fatigue, the pain, the bone chilling cold, and the implications of my life-saving side effects. People consistently tell me I should plan for the long term, which, by the way is my ‘go to’ plan, but nagging at me is the same type of denial that Dr Kalanithi probably felt.
Level #3. What makes us human – As President of the National Foundation of Swallowing Disorders, I’m exposed to a lot of people who are suffering from all types of underlying diseases and causes including oral cancers, degenerative neurologic conditions, stroke, and head and neck injuries/accidents. I don’t want this to come out wrong, but with the exposure to so much suffering, I ask myself about what makes us human and at what point life loses meaning. Early in the book, Dr Kalanithi visits a long term care facility catering to young people with traumatic brain injuries. He is stunned by the absence of parents visiting their children. He wonders where are the parents and why aren’t they here tending to their kids? A facility healthcare provider provides him with an answer. At first, parents are vigilant visitors; they come multiple times a day. After a while, they come daily, then only on a weekend. After that only on a holiday or a birthday. Then they stop coming. He is in part incensed by this abandonment, yet he also thinks about what makes these non-communicative bodies (the children and young adults in this ward), human. Have they lost their humanity? This has an impact on how the author lives his life; it has an impact on how I live and think about my life and others’.
Level #4. The illness impact affect – Dr. Kalanithi, from an early age, was certain of one thing: someday he would die. Eventually, everyone dies. As in The Lion King, It’s part of the cycle of life. Many people don’t give much thought to dying until late in life. That ‘aha’ moment came to me during one of my most severe cancer recurrences in 2006. This understanding changes us. We live more in the moment than the future. We try to figure out what’s important and what’s not. What’s helpful and what’s not. For those fortunate enough to be able to act on their desires, we emphasize the things that are important and discard the things that aren’t. He articulates this in his writings.
Level #5. Human marginalization – This is a bit of a reach, but the book talks about patients Paul sees and treats. He attempts to align his treatment plans with the quality of life his patient’s desire. It’s a balancing act between aggressive treatment (brain and spine surgery) leading to a longer life with the higher probability of a negative quality of life impact versus a less aggressive treatment with the result being a shorter life with a higher quality. The more aggressive treatments often times lead to personality, cognitive, and mobility changes, which can lead to a person becoming ‘marginalized’. This ties in closely with level #3 above. People who were functioning in the “normal” range become less so. Maybe a few degrees; maybe many. In the people we work with at the National Foundation of Swallowing Disorders, a very common theme is isolation, loneliness, and depression. When people can no longer share meals socially, their world changes. Meals are so central to our way of living. Like the children and young adults in the long term care facility, people with swallowing disorders become marginalized by society. And, it is not just themselves who become marginalized, those close to them feel the impact.
In conclusion, I’d like to say this book is for everyone. But, it’s not. It is for those that have an open mind and would like to better understand how dying gives us life.
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