When Breath Becomes Air: Dr Lucy Kalanithi Discusses the Story Behind the NYT Bestseller

; Lucy Kalanithi, MD

Disclosures

July 11, 2016

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Editor's Note:
When neurosurgeon Paul Kalanithi passed away at age 37 from metastatic lung cancer on March 9, 2015, he left behind an unfinished manuscript with notes to his wife Lucy about publishing the text. Published posthumously, When Breath Becomes Air immediately became a national bestseller and remained on the New York Times bestseller list for nearly 3 months.

Here, Kalanithi's widow, herself an internist at Stanford, talks with Eric Topol about her husband, his book, and the legacy of living meaningfully that he left behind.

A Chance Meeting of Minds and Hearts

Eric J. Topol, MD: Hi. I am Eric Topol, editor-in-chief at Medscape. I am delighted to have the chance to speak with Lucy Kalanithi, an internist on the clinical faculty at Stanford University. Her husband, Paul Kalanithi, wrote a phenomenal book, When Breath Becomes Air (Random House, 2016), for which she wrote the epilogue. We are going to be talking about Lucy's career, the book, and what it means as an inspiration for medicine and for people facing cancer or terminal illness.

You have been busy recently with the release of the book. Your husband, Paul, was a very young man who died of lung cancer. You met at Yale in the first year of medical school. What brought you two together?

Lucy Kalanithi, MD: We met in 2003 at Yale as first-year students. The thing that brought us together was the annual hunger and homelessness fundraiser run by the students at Yale Med. My name was picked out of a raffle to go on a date with Paul. We were never apart after that.

Dr Topol: This was love at first sight.

Dr Kalanithi: Kind of.

Dr Topol: Did you ever think that you would wind up with a physician as a spouse, being a doctor yourself?

Dr Kalanithi: I never thought about it. You make these decisions as you go through your life. I thought I was going to be an engineer or a math teacher, and then I sort of combined the personal and the scientific to bring me into medicine. I was really drawn to Paul in medical school because he was a mix of a literary philosophical guy who was coming into medicine for the deep human part of what it means to be [a doctor]. That was why he was so appealing.

Dr Topol: There are some very different and complementary aspects of your personalities. In the book, he alluded to a moment when you were reading about an echocardiogram of a patient with ventricular fibrillation, and then you started crying because you realized that that person had to have died. In just a very brief description, he gave a window into your caring and emotional sides. Paul seemed to be a deep thinker with the background not only of having gone to Stanford, but of also having an extra master's degree in English, and then he went to Cambridge for philosophy and science. He was really into deep thinking, particularly about the meaning of life. Did he talk much about that, or did he just think about it?

Dr Kalanithi: Both. He was talking and thinking about it all the time—not necessarily explicitly, like quoting philosophers or talking about the books he loved, but just the way in which he was so engaged in life. Someone asked me whether he was always really intense. You can tell in his writing that he's a real striver and deeply thoughtful, and I said yes, he was always very intense. But it wasn't that he was always very serious. He was just as likely to stay up all night drinking whiskey with an old friend—but that's a form of intensity, too. He was just really alive.

Dr Topol: What I'm trying to understand was that before he was diagnosed with lung cancer, it seemed that when he wrote the retrospective, it was for understanding the meaning of life through death. What could be more of a challenge—an acid test—to understand one's life than having to face death? Most people don't think so much about this, but it's something that he seemed to clue in to long before he took ill.

Dr Kalanithi: That's right. Even as a young person, he was very interested in literature and philosophy as a way to get at the question of what makes us human, what it means to be human, thinking about death, and how to make sense of our lives and build value despite the fact that we are mortal. He surprised himself by entering medicine, and ultimately it was because he wanted to be face-to-face with people who were making those tough decisions and approaching their mortality directly. When he was diagnosed with stage IV lung cancer when he was 36 and a chief resident in neurosurgery at Stanford, those questions were no longer theoretical. They were deeply emotional and existential for him. As he was writing the book, he was asking questions about dying. "How do I spend my time?" But those are really questions about living.

Dr Topol: The theme of the meaning of life shines through in an extraordinary way.

You both finished at Yale and did different residencies. You were at University of California, San Francisco, and he was at Stanford, where he went into neurosurgery. In the first part of the book, where he recaps that time, there were a lot of deaths. He gives the most elegant description that I've ever read of what it's like to deal with cadavers. He talks about the first death that he encountered as a trainee, premature babies who died, and other patients. He had a list of patients. This made a big impact on him. It was fascinating, even the loss of his co-resident and friend.

Dr Kalanithi: From suicide—that's right.

Dr Topol: He took all of these lessons from that. At that point, he's well into the neurosurgery residency. He's not well, but you don't know what it is. And then what happens?

A Devastating Diagnosis

Dr Kalanithi: For a period of about 5 months before his diagnosis, he had been losing weight and started to have very severe back pain. He had just come off his research years. He reentered the work of a chief resident and was on his feet 14 hours a day and skipping lunch. As an intern, he had lost 15 pounds, so this seemed like the same thing being repeated. Your back aches because you are doing long spinal surgeries. Then he started to have night sweats, and he got some lab tests that were a little off and a back x-ray that looked okay. But things were continuing to get worse, and ultimately he had a chest x-ray. It showed nodules throughout his chest and lungs, and it was clear to both of us, in that moment, what that likely was. Then it was confirmed on a CT that we looked at together. He pulled it up on the screen, and it was a really unmediated way to receive that news—to look at his scan with our own eyes. That was the way in which we received the metastatic cancer diagnosis.

Dr Topol: This is a unique situation of such a young guy, a doctor, who dealt with a lot of brain tumors in the neurosurgery world. And for you, as a physician, and also the spouse, having to deal with this immense issue.

He tested positive for the EGFR mutation and initially, at least, had a nice response to treatment with Tarceva. Is that right?

Dr Kalanithi: That's right. He was on erlotinib, and it really brought him back to life. It was actually quite amazing to see. When he was diagnosed, we both thought that he might even die that year. He ended up living 22 months, which is probably around the median survival for stage IV cancer, but that first year was such high-quality time because the therapy had so few side effects. He went back to work initially because he wanted to finish residency, and he was always working toward the best-case scenario. He knew that on erlotinib, maybe he would live a decade, and he said, "If I don't become a neurosurgeon, you would be really mad if I live 10 years." So, that was the best-case scenario and he set down the neurosurgical path again. When erlotinib failed, the prognosis shrinks, the treatment becomes more debilitating, and that was when he started to focus on writing as his top priority. And we were also having a baby.

Dr Topol: I was struck by how, as he was doing his neurosurgery residency, it seemed as though he had done it and yet he still wanted to make sure that he fulfilled every last requirement. Wouldn't they give him a pass? He was being treated for lung cancer and he went through all of this stuff. Did he even ask whether he had done enough to graduate?

Dr Kalanithi: He met the technical requirements to graduate. But there was a moment, which he describes in the book, when he was doing shift work, in a way. He would come in and take care of patients, but he wasn't rounding. He was just in the operating room, to meet the technical bar.

He also started staying later and later because the thing that was the richest for him was the people who he was taking care of—shepherding people through this difficult time, and not just being technically excellent but being connected to his patients. That was what brought him enough meaning that he could suffer through. He was in pain and he was nauseated. We did a lot of work with his medications to try to control his symptoms so that he could focus on his patients.

Writing the Book: A Dream Come True

Dr Topol: When along the way did he say, "I'm going to write a book"? When did he have this epiphany?

Dr Kalanithi: He always thought that he would be a writer. He was a very talented writer and he loved it. He wrote that essay in the New York Times, "How Long Have I Got Left?" He wrote it on a flight and he wanted a way to work through the challenge of facing uncertainty. Even when you have a terminal illness, you're still also coping with uncertainty about when and how, and what the future holds. He wrote that essay and sent it to two friends. The first friend wrote back and said, "This essay isn't that great yet—you buried your lead and it's not very funny, and you are making three points at once." The other friend said, "I forwarded this straight to the op-ed desk at the New York Times." And they ended up publishing it almost without any edits. Then he was approached by agents and editors after that, which was literally a dream come true.

Dr Topol: So it was the op-ed that led to this. He wasn't thinking of writing a book at that time. Being so sick, it must have been very hard.

You get into some of the things you had to do to try to support him to be able to write. Obviously he had immense talent. As Abraham Verghese says in the prologue, "It took my breath away to read this." It was no surprise when I first read it that this would become the number-one nonfiction book everywhere. It has had perhaps more impact than any book that I can remember. You had to finish the book because he was so sick that he could only get so far. That wasn't your plan, to be a writer, particularly at this rarefied level. How did you deal with that?

Dr Kalanithi: There was more that he would have liked to write, but when he died the book was a manuscript on his computer. It was an open Word document. He died on a Monday night around 9 o'clock, and then 12 hours later I was on the phone with his agent and editor asking how we could still make this happen. He had wanted it to happen. He had secured the book deal. He was totally thrilled, and then when he knew he was dying and couldn't work on it anymore, he said, "Can you please try to publish this in some way?" We didn't even know if it would be a series of essays or a book. It took a lot of work throughout 2015 to put it all together. It was copyedited and we supplemented it with other writing that he had done. Here's an example: He had written in brackets, "insert anatomy lab essay"—an essay about the anatomy lab that he had written as a medical student. There were other pieces of writing that made their way into it to make sure that it could be a book. It's all his writing, but choosing the cover and many other decisions, I had to make for him, and then I wrote the epilogue.

The Title

Dr Topol: He had come up with the title? It could not be more perfect.

Dr Kalanithi: It's from a little Elizabethan poem by Greville that starts out with, "You that seek what life is in death now find it air that once was breath." He had this little volume of poetry that he read when he was sick—some amazing poems, like "The Glories of Our Blood and State" by James Shirley. He was reading a lot about mortality and death, and when he read that Greville poem he said, "I think I have the title for my book," and he put a little star next to that line. It's beautiful.

Dr Topol: You touched on the fact that there was another side of him. He was not just the deep thinker and serious philosopher about the meaning of life, but also a jokester and a person with a lot of humor. It struck me so much when he said to the oncologist after the diagnosis, "Can I start smoking now?" Or when you had your in vitro fertilization, you had the blastocyst and he said, "The baby has your cell membrane."

Because of what you have done together, writing the book and capping it off with this amazing epilogue, you have immortalized his life. What has happened here is that so many people have read this and have been inspired to be able to face death, but also to make the most out of life as possible and to be brave and courageous. Where do you take this now? This is an unparalleled story in many respects. You are young. You have a medical career. How do you integrate what has happened here with your arc in medicine?

Dr Kalanithi: "Integrate" is a great word. It's funny, because I thought after Paul died I would work really hard to make sure this book happens, and then I'll go back to my job. I'm an internist, and I was at this great research institute at Stanford that thinks about healthcare value. And then, with the response to the book, I've been able to enter the national conversation about end-of-life care, which is so compelling and amazing to me. It's a way in which this experience stretches forward into the future for me to be thinking about this as a widow, a former caregiver, and doctor all put together. And I don't know where it's going to lead me, but I am also much more comfortable tolerating uncertainty. In medicine, you get on this path and you feel like you're going to be on this one path that you can see stretching out; or you think that you need a credential for every single thing you say. Instead, speaking about this personal experience has taught me something else about expertise, authenticity, and making a difference. It's just been amazing.

Dr Topol: Some things go beyond evidence-based medicine. What you are getting at here is something that our society has had such a difficult time grappling with. You have some invaluable lessons and experiences here to get out. For me, this has been a great opportunity to learn about what happened, to get in your head about what happened during a horrific experience that turned into something that is not just instructive but highly inspirational. I give so much credit to you. Many people who have read the book say, "What a courageous man and brave person to look death in the eye and articulate it as he did." But equally so is what you have done, and continue to do, to take this mission forward, and all that you learned to help impart to others. So, thank you for what you've done.

We are fortunate to have a physician in our midst who can help take this forward. This book is one that every medical student should read as part of their curriculum, but it's much bigger than that. It's not just about doctors learning about the care of their patients; all people could benefit. That means you need to print about 7 billion books translated into a lot of different languages.

Thanks, Lucy, for joining us on Medscape One-on-One. Thanks to our viewers for your attention to a very interesting conversation with a remarkable person. If you haven't read the book, you ought to, because you will be inspired.

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