When Breath Becomes Air by Paul Kalanithi

Foreword. I only knew Paul after his death. After he was diagnosed with cancer, he had a desire to write a book. We become aware of our own mortality after reading his book as well. Paul had a flair of writing, however, had a calling of being a physician. He would eventually be a neurosurgeon. Paul writes occasionally and was an excellent writer. Paul has been very vulnerable and revealed a lot about himself.

Prologue. The cancer had spread and was widely disseminated. I was the patient this time. Lucy was my wife and she was by my side. When I had back pain, I went for an MRI scan. X-rays aren’t good for detection of cancer. Weight loss became more common as the days went by. I was an outstanding surgeon and had a bright career ahead of me. A few weeks later, I had strong bouts of chest pain. My work and the demanding schedule had put a toll on our marriage. My wife wanted to leave me. The pain was getting more severe and I was in trouble. I also started to tell friends about my cancer. My wife learnt about it and promised not to leave me.

Part 1: In Perfect Health I Begin

I never thought that I would be a doctor. I didn’t know much about medicine when I was young. We had two dogs. Once, we went to the desert and found the insects there to be fascinating. My younger brother was Jeevan. My dad was the one who brought our family to the desert town of Kingman, in Arizona. The issue with Kingman was that the education system was bad and there were many dropouts. My mum instilled in us, a love of reading. I eventually got into Stanford University. I liked a girl named Abigail in school. In school, I was driven to understand what makes human life meaningful? One of my favorite authors, was T.S. Eliot. Literature was a form of moral reflection for me. Was the unlived life worth examining? I did an internship at Sierra Camp, which was very eye opening indeed. I studied both neuroscience and literature in school. Many of the caregivers will not even show up to pay the patients of severe brain problems. Some parents even abandon their kids. Brains indeed play a crucial role in our ability to form relationships. Language of life was a passion, hunger and a love. I studied the work of Walt Whitman. I wanted to find out how biology, morality, literature and philosophy intersected. I was contemplating medical school now. After I enrolled myself into the HPS program at Cambridge, I started to realize that only by practicing medicine, I could pursue a serious biological philosophy. I cut my first dead body and it felt alright. These were cadavers or donor corpses. I hardly ever felt like vomiting. The book by Shep Nuland on ‘How we die’ was very popular. It addressed the fact of existence. Although I read about the particularities of death, being a surgeon allowed me to understand them better. I was asked to deliver a child. I was educated on how to read the fetal heart rates etc. The twins were in distress and their only hope was a C-section. However, they didn’t survive as they were premature. On my next case, the baby was successfully delivered and I was very relieved indeed. Next on my rotation was surgical oncology. Many of the medical students chose to specialize in things like radiology or dermatology, which were deemed easier. Eventually, I chose neurosurgery as my specialty. Part of a doctor’s job is about to be emotionally attached to the patient and to calm them down. Brain surgery has a huge impact on the patient’s life. Would you trade your ability to talk for a few extra months of mute life? What makes life meaningful enough to go on living? Neurosurgeons have a huge responsibility. During the first year of residency, the workload was tremendous. The papers I file are narratives of risks and triumph. I finally lost my first patient. I saw a few people die in the course of my work. Sometimes, death has a suffocating weight on me too. In the second year of training, I was the first to arrive in an emergency. I was doing a lot of overtime work, which was very tiring indeed. It was so stressful that some left the profession. Some cases were beyond hope, where even surgery would not do much good. I did not think I was a doctor who missed the larger human significance. My dad was an inspiration to me and he even when to buy meals for his patients when they requested for them. I once persuaded a girl’s family that surgery was the best option for her. Announcing the bad news to a patient is very difficult indeed. Brain surgery for cases for cancer that metastases from other parts of body, can help to prolong life. In medical statistics, there is the Kaplan-Meier curve. This measures the number of patients surviving over time for any particular disease. It is a metric where doctors understand the ferocity of a disease. Instead of saying ‘You have a 95% chance of being dead in two years’, doctors can say ‘Most patients live many months to a couple of years.’. It is useful to hold a patient’s hand when announcing bad news. Sometimes, there can be an emotional cost as well. However, it can have its rewards too. For a neurosurgeon, it is also important to keep up to date on the latest technologies available in the market too. I loved talking to other scientists. Pancreatic cancer has a low survival rate. A patient can only be under anesthesia for that long. It is like finding the middle ground between the hare and the tortoise. Time flies in the OR. Technical excellence, was a moral requirement for me. For brain surgery, it is extremely important to be precise, up to the exact millimeter. The worst part of the brain damage is the cortex, the Wenicke and Broca area. These control one’s language abilities. I was excellent at my job and rewards and awards were coming naturally. My scientist friend committed suicide one day after he had a difficult complication. This made me contemplate the meaning of life even more.

The secret is to know that the deck is stacked, that you will lose, that your hands or judgment will slip, and yet still struggle to win for your patients. You can’t ever reach perfection, but you can believe in an asymptote toward which you are ceaselessly striving. – Paul Kalanithi

Books become my closest confidants, finely ground lenses providing new views of the world. – Paul Kalanithi

Indeed, this is how 99% of people select their jobs: pay, work environment, hours. But that’s the point. Putting lifestyle first is how you find a job – not a calling. – Paul Kalanithi

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. – Paul Kalanithi

Amid the tragedies and failures, I feared I was losing sight of the singular importance of human relationships, not between patients and their families but between doctor and patient. Technical excellence was not enough. As a resident, my highest ideal was not saving lives – everyone dies eventually – but guiding a patient or family to an understanding of death or illness. – Paul Kalanithi

The call to protect life – and not merely life but another’s identity; it is perhaps not too much to say another’s soul – was obvious in its sacredness. – Paul Kalanithi

A resident’s surgical skill is judged by his technique and his speed. You can’t be sloppy, and you can’t be slow. – Paul Kalanithi

Neurosurgery requires a commitment to one’s own excellence and a commitment to another’s identity. The decision to operate at all involves an appraisal of one’s own abilities, as well as a deep sense of who the patient is and what she holds dear. – Paul Kalanithi

Cease Not till Death

The CT images were not good. My identity no longer mattered. It was life shattering and it hurt me. My potential would never be fulfilled. I was diagnosed with lung cancer. Emma Hayward was my oncologist. Emma was one of the best lung cancer specialist out there. She was also compassionate in nature. I felt weaker as the cancer spread. I couldn’t know my spot on the Kaplan-Meier curve. One option for me was chemotherapy and the other was therapy targeting at molecular defects. I had a PI3K mutation. Emma suggest carboplatin as chemotherapy for me. She refused to discuss the Kaplan-Meier curves. Lucy and I went to the sperm bank to preserve gametes. There is no point in depending or reading too much into statistics. I felt a drop of hope. After a drug, my appetite returned and I was happier. I had to figure out what is the most important for me. Cancer had helped to save my marriage with Lucy. I was also in physical therapy now. I was lifting my legs, but it was so exhausting and humiliating. I kept pushing myself. Finally, my condition improved. I could ride a bike for 6 miles and that was a massive achievement. Emma was a friend to me as well. I wanted a child, but the decision would ultimately lie with Lucy, because she would take care of the child. Life wasn’t about avoiding suffering. Life was about striving. We all need to carry on living. Only the best embryos would have a chance of survival. The tumor was reduced after a CT scan. It was good news. Life was looking up now. I started reading more about mortality. I pushed myself to return to the OR. Some patients could live for at least 10 years on the drug. I felt it was a moral responsibility to continue being a surgeon. Suddenly, halfway through the surgery, I felt faint and couldn’t continue. My junior resident took over. It was disappointing. Over time, my skills started to improve and I was getting better. However, it felt joyless as sometimes I would still be in pain. I wanted to be a doctor-scientist, but there were no vacancies. I overcame my pain and continued to see patients. I wanted to run a cancer lab as it would less demanding. I had to figure out what was the most important to me. God and meaning were linked, but it was also possible to believe in one and not the other. The problem is that science cannot reach some permanent truth. Hence, it might be incompatible with human life, which is more unpredictable. Science is cold, unlike the warmth of humans. I returned to Christianity as I found it to be compelling. Humans do not like blind determinism. A new tumour emerged in my latest CT scan. I was neither angry nor scared. I felt really tired after a grueling surgery. My last surgery was a big success and I could end on a high. Chemotherapy was the only way as localized treatment was out of the question. It would start on Monday. I felt very tired and the food was tasteless. I wanted to go for graduation but I started puking and it was horrible. I had to be placed on IV drip. My condition worsened. My kidneys were starting to fail now. I was placed in ICU now. Many specialists were now attending to me. Lucy was now 38 weeks pregnant. The problem was that the specialists could not come to a common consensus. No 1 party was willing to take responsibility. Some of them suggested ill-advised tests. I struggled to listen to them. Emma was now the captain of the ship. I was discharged from the hospital finally. I was very tired again, after the chemotherapy doses. Emma finally revealed that I could live for 5 more years. Lucy was in labour. My baby was finally born and it was a complete joy. Time began to feel static. The days of the week no longer to mean anything to me as I wasn’t working.

If I were a writer of books, I would compile a register, with a comment, of the various deaths of men: he would should teach men to die would at the same time teach them to live. – Michel de Montaigne (That to study philosophy is to learn to die)

The fact of death is unsettling. Yet there is no other way to live. – Paul Kalanithi

Only 0.0012% of 36 year olds get lung cancer. Yes, all cancer patients are unlucky, but there’s cancer and then there’s CANCER, and you have to be really unlucky to have the latter. – Paul Kalanithi

It’s easier when the patient is 94, in the last stages of dementia, with a severe brain bleed. But for someone like me – a 36 year old given a diagnosis of terminal cancer – there aren’t really words. – Paul Kalanithi

Many people, once diagnosed with cancer, quit work entirely. Others focus on it heavily. Either way is okay. – Emma Hayward, an oncologist

If the weight of mortality does not grow lighter, does it at least get more familiar? – Paul Kalanithi

If human relationality formed the bedrock of meaning, it seemed to us that rearing children added another dimension to that meaning. – Paul Kalanithi

I would push myself to return to the Operating Room. Why? Because I could. Because that’s who I was. Because I would have to learn to live in a different way, seeing death as an imposing itinerant visitor but knowing that even if I’m dying, until I actually die, I am still living. – Paul Kalanithi

The tricky part of illness is that, as you go through it, your values are constantly changing. You try to figure out what matters to you, and then you keep figuring it out. – Paul Kalanithi

The way forward would seem obvious, if only I knew how many months or years I had left. Tell me 3 months, I’d spend time with family. Tell me 1 year, I’d write a book. Give me 10 years, I’d get back to treating diseases. – Paul Kalanithi

Human knowledge is never contained in one person. It grows from the relationships we create between each other and the world. – Paul Kalanithi

But at my back in a cold blast I hear the rattle of the bones, and chuckle spread from ear to ear. – T.S. Eilot

Part of the cruelty of cancer, though, is not only that it limits your time; it also limits your energy, vastly reducing the amount you can squeeze into a day. It is a tired hare who now races. – Paul Kalanithi

Epilogue by Lucy Kalanithi

Paul died on March 9, 2015. Chemotherapy stopped working a few months before his death. We still had our family dinners etc. Paul was focused on completing his book. At his late stages, he lost his appetite completely. At times, he would suffer from a really serious fever. Paul chose the do not resuscitate status at the very end. We chose comfort care at home as he didn’t want to die in hospital. His carbon dioxide levels were too high, indicating lung failure. Paul wanted to hold Cady, his daughter. Paul was really to remove the breathing support and die. His wish was for us to publish his manuscript. I hope that he would be resting in peace now. Our family continued to sing to him and look at his facial expressions. Soon, his breaths became more faltering and irregular. During his last years, Paul wrote furiously and wanted to complete the book. He was very determined to write. He was brave throughout his most difficult days. He did not avert his eyes from death and was strong. Our love stood strong and firm throughout his difficult days. Paul suggested that I remarry after my marriage. I was definitely very blessed to have known a man like him. He was an unwavering source of support to our daughter. Throughout his illness, he faced it with grace and authenticity and acceptance. He was fully alive and his life was full of meaning even in his darkest days. This book is his culmination of his life and love for literature. Paul had made great contributions in the area of neuroscience. Paul managed to face death with integrity, and I was as his wife, his witness.

Conversely, we knew that one trick to managing a terminal illness is to be deeply in love – to be vulnerable, kind, generous, grateful. – Lucy Kalanithi

Bereavement (of a partner) is not the truncation of married love, but one of its regular phases – like the honeymoon. What we want is to live our marriage well and faithfully through that phase too. – C.S. Lewis

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