A doctor’s memoir on living with and dying of cancer

Monday October 7 2019

Preparedness. Wakiso Health Centre IV officials

Preparedness. Wakiso Health Centre IV officials immunise girls against the virus that spreads cervical cancer during the cervical cancer week in Wakiso District in 2016. PHOTO BY JOSEPH KIGGUNDU 

By Carolyne B Atangaza

Dr Paul Kalanithi was one of those immensely gifted individuals that excelled in whatever field they chose; as a scientist he won the Dr Louis H Nahum Prize (his field’s highest research award) for his research on Tourette’s syndrome.
As demonstrated by When Breath Becomes Air, Dr Kalanithi was also a gifted writer who before attending medical school, had considered pursuing writing as a full-time career for which he went ahead to earn two degrees in English literature from Stanford University.
He uses this book to share with the reader the highlights of his journey, the experiences, books and people that shaped him.

For instance, Dr Kalanithi flirted with writing, which he was passionate about but along the way neurosurgery won after he “. . . realised that the questions intersecting life, death, and meaning, questions that all people face at some point, usually arise in a medical context. Because the brain mediates our experience of the world, any neurosurgical problem forces a patient and family, ideally with a doctor as a guide, to answer this question: What makes life meaningful enough to go on living?”
The book is divided into neat chapters that chronicle his transition from carefree student, to husband, doctor and then patient. He brings the ordinary person into the sacred world of clinical residencies with its strains, rigours and challenges that in most cases are literally matters of life and death.

Following an unsuccessful surgery, involving a young patient with a brain tumour, Dr Kalanithi illustrates his frustration, “The difference between tragedy and triumph was defined by one or two millimeters. One day, Matthew… who had charmed the ward a few years back, was readmitted. His hypothalamus had … been slightly damaged during the operation to remove his tumor; the adorable eight-year-old was now a twelve-year-old monster.
“The pain of failure had led me to understand that in neurosurgery technical excellence was a moral requirement. Good intentions were not enough, not when so much depended on my skills, when the difference between tragedy and triumph was defined by one or two millimetres.”

Using his experience both as a doctor and a patient, Dr Kalanithi, manages to clarify that doctors are human beings with the huge responsibility of making life and death decisions within minutes.
“Learning to judge whose lives could be saved, whose couldn’t be, and whose shouldn’t be requires an unattainable prognostic ability. I made mistakes. Rushing a patient to the OR to save only enough brain that his heart beats but he can never speak, he eats through a tube, and he is condemned to an existence he would never want… I came to see this as a more egregious failure than the patient dying.”

Life after diagnosis
His writing is not only eloquent and elegant but it is filled with the kind of insights that only come through experience. For instance after his diagnosis, Dr Kalanithi makes a number of profound statements that stuck with me and have changed my view on life and death. Here are some memorable quotes about life and death from the book “Dealing with the fact of death is unsettling. Yet, there is no other way to live. Can we become comfortable with the most uncomfortable thing in the world—death? If the weight of mortality does not grow lighter, does it at least grow more familiar?

“As a doctor, I was an object, a cause. As a patient, I was merely something to which things happened. Life isn’t about avoiding suffering. The defining characteristic of an organism is striving.
“Even if I am dying, until I actually die, I am still living.” The tricky thing about terminal illness (and life, probably) is your values are constantly changing. You try to figure out what matters to you and then you keep figuring it out.”

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How do you decide what to do with your life when you are not sure how much life you have left? Maybe in the absence of certainty we should just assume we are going to live a long time. Maybe that’s the only way forward.
The last chapter of the book was written by Dr Lucy Kalanithi, his wife. This is the part of the book that tugged at my guts and destroyed me. Dr Kalanithi and his wife decided to have a child despite his diagnosis. Dr Kalanithi was there for the delivery, but he was so weak and chilled from chemotherapy that he was not able to put his newborn daughter against his skin. Eight months later, his daughter is brought into the room to say goodbye to a weakened Dr Kalanithi and he dies shortly after.

I still do not know how I got through Lucy’s epilogue, because I kept choking up from the intensity of emotion that jumps off the page. “I visit his grave often, taking a small bottle of Madeira, the wine of our honeymoon destination,” she writes. “Each time, I pour some out on the grass for Paul … and rub the grass as if it were Paul’s hair. Cady visits his grave before her nap, lying on a blanket … grabbing at the flowers we’ve laid down.”

Dr Kalanithi’s life might not have been tragic because he managed to pack a lot of worthwhile achievements in his few years but thinking of the enormity of talent and brilliance which was still untapped is what makes it a particularly cruel loss.
This book is a fitting ending for someone who spent his life searching for meaning in one way or another; through books, writing, medicine, surgery, and science. It made me weep, rage and then in that special way that only good books are capable of, calmed me down and filled me with the kind of hope that makes you smile at the world with all its craziness.

Helpless
Dr Paul Kalanithi and his wife, decided to have a child despite his diagnosis. Dr Kalanithi was there for the delivery, but he was so weak and chilled from chemotherapy that he was not able to put his newborn daughter against his skin. Eight months later, his daughter is brought into the room to say goodbye to a weakened Dr Kalanithi and he dies shortly after.

satangaza@ug.nationmedia.com

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