IN TRYING TO CONVEY how her husband, Paul Kalanithi, endured after learning he had advanced lung cancer, Lucy Kalanithi frequently falls back on Friedrich Nietzche’s words loosely translated: “He who has a why to live can bear almost any how.”

​​Paul was a student of philosophy and literature who wanted to explore life’s most difficult questions firsthand. This prodding led him to pursue a career in neurosurgery, where his hands and skill could mean the difference between life and death for his patients. In When Breath Becomes Air, Paul describes his unflinching search for purpose after being diagnosed with stage IV non-small cell lung cancer at age 36 in 2013. In grappling with his own mortality, he continued to pursue his passions—finishing his neurosurgery residency, starting a family and writing a memoir that speaks, with cutting insights, to a common human condition.​​

Lucy’s Recommended Resources

On having a child when life doesn’t turn out as planned:

On coping with cancer:

On reluctance to talk about death: ​

On g​rief:

After her husband’s death, Lucy, who is also a physician, wrote the final chapter of his book—describing herself as both “wife and witness.” In the video above, Lucy discusses resources she has found that have helped her in the years since Paul’s death. She also shares her perspective on the couple’s relationship, the gratification and isolation of caregiving, and the importance of finding purpose.

Here are some highlights from our Facebook Live interview, which took place on Sept. 21 as part of Cancer Today’s Book Club discussion.

CT: In his book, Paul talks about the decision to have a child. He says that you thought it was up to him. Is that how you remember it, and can you talk a little bit about what that was like?
Kalanithi: It was so intense because Paul was diagnosed, as you know, in stage IV, which, as it stands right now, is incurable. And he lived for 22 months after being diagnosed. We had a child who was 8 months old when he died, and she is now 4.

Paul wrote about a conversation that was incredible during that decision, that really crystallized things for me. I said, ​“I’m really worried about what this will mean for you, and it’s inviting more uncertainty, and it’s arduous to have a kid and then, most of all, you might leave the child behind. Don’t you think that’ll make this illness more painful or make dying more painful?” And then he said, “Wouldn’t it be great if it did?” And that was this really lovely moment.

Nobody has a child because it’s easy. You do it because it’s meaningful and rich, and you think you can take good care of a child, and I think we both felt that was still possible, and it turned out to be this beautiful rich thing. I can’t imagine not having done it.

CT: In the moment when you were having your daughter, Cady, what was that like?
Kalanithi: Paul had just come out of the hospital with a pretty long two-week hospitalization, and he was really weak. He described in the book how he had to use two hands to lift a glass of water. So, my mom was my labor partner, but then, really, the person I wanted there was Paul. So, in the end of the labor, he came into the hospital with his dad and was there for Cady’s birth.

It just was fabulous, and I think also for him, to have a new child who’s growing alongside his illness and to just feel this sense of purpose as a parent. Having a newborn, I needed a lot of support too, and so he was providing support to me. And I think that’s really helpful, and then he didn’t have to feel purely like the object of help.

Paul said, “I want everybody else to take care of Lucy so Lucy can take care of me.” And it was this really helpful acknowledgement of how much supporting the immediate family member for somebody with an illness is also a way of supporting the patient. And I was really grateful to him for admitting that.

CT: Were you surprised about the way that Paul wrote about your relationship, even going so far as to say that he felt that cancer had saved your marriage? How do you think cancer changed your relationship?
Kalanithi: So Paul, in the prologue to the book, where he is describing the time leading up to his diagnosis, talks about how our marriage was kind of in a tough spot at the time, mostly due to​ work-life balance. Paul was a resident working over 80 hours a week, and I was working really hard too. That actually was the thing that surprised me, when I read that he was writing a little bit about it. ​

But, you know, it’s the truth, and I kind of liked when he wrote about it. I think it tells you upfront when you’re a reader that he is going to be straightforward. I think the way in which it helped us, in which things shifted quickly when he was diagnosed, was we immediately and luckily started giving each other the benefit of the doubt. I think previously we’d been starting to resent each other a little bit, which is sort of dangerous in a relationship.

​There’s this relationship expert, I don’t know too much of his work, but his name is John Gottman and he runs this love lab, and he talks about how the kiss of death in a relationship is eye-rolling, like, serious eye-rolling. And missing your partner’s emotions or losing empathy for your partner or resenting your partner. And I think that’s when you start to lose the ability to connect, and I think that the diagnosis just was so shocking that I think it made us both immediately recognize the need to listen to the other person and give each other the benefit of the doubt. And that kind of never stopped after that.

CT: Do you have any tips for people who are caring for people who facing a late-stage disease?
Kalanithi: I think my number one tip that I would say to almost anybody is to consider involving a palliative care specialist and a palliative care team.​​Oftentimes, people hear palliative care, and they think that it means you are close to dying, or you have to be dying to have that type of medical care. And actually, that’s true for hospice, which is a tiny subset of palliative care. But palliative care itself is just for anybody with any serious illness, and it doesn’t have to be terminal illness. And you can get that type of care alongside your other care, like your chemo or any care that might be meant to cure you. Usually it’s a team of a palliative care doctor who’s a specialist in, especially, symptoms and quality of life, and then usually there are other team members like nurses, social workers, sometimes chaplains, and the specialty is focused on quality of life for the patient and the family or loved ones around them.

Then I think those kind of general coping things are really important, like exercise and sleep. I think a lot about family caregivers too. There are 40 million people doing that job and taking care of an adult relative. When you’re doing it, you kind of feel like you’re the only person who’s doing it, but actually you’re not. There’s starting to be legislation and researchers, and AARP has a lot of resources for caregivers, and Congress is looking at legislation to support caregivers better in ways similar to maternity leave.

CT: You wrote the final chapter of Paul’s book. You were​ his advocate. Can you describe what was probably the most challenging part of your role as caregiver, and you also kind of touched upon this, the rewarding part of it too?
Kalanithi: You know, obviously [the end of Paul’s life] was so intensely sad. I can’t overstate it. Everybody knows. It’s funny because you know how people talk about how death is the one commonality, and I think so is grief, you know? I think we’ll all lose what we love. It’s so hard.

I think the thing that helped us towards the end of Paul’s life and that helped me be an advocate for Paul, was having a clear sense of what was really important to him. And for Paul it was being mentally lucid. And being able to interact and think clearly, and ideally, keep writing. Because he was working on the book right up until a few days before he died.

So that affected his medical care decisions kind of throughout. As an example, his palliative care doctor put him on a stimulant medication so that he could focus better when he was writing, particularly because he had a lot of fatigue, and he was on a lot of pain killers that had their own side effects. Towards the end of his life, he was facing the decision about whether to go on a ventilator, and it became increasingly clear he probably wouldn’t be able to come off of it. So his goal of being mentally lucid and being able to interact and write wasn’t going to be possible. So that made that decision-making pretty clear. I think having other people say, I’m trying to survive as long as possible so I can go to an important family event, see my child graduate. Other people say the thing that’s most important to me is to avoid pain or other symptoms like shortness of breath. So there are lots of priorities that people have, and I think if your family and you and your health care team know what they are, then there’s a lot that we can do in health care to work on those.

CT: Well, let’s talk a little about grief. What has helped you in the years since Paul’s passing?
Kalanithi: For about a year after Paul died, I was functioning and taking care of Cady and going to work and working on the epilogue for Paul’s book, but I had a lot of physical symptoms of grief. That’s one thing that surprised me. I had really severe tingling in my hands that I thought was, I couldn’t believe it was a grief-related thing. And I got all this medical testing because I was so scared about what it meant, and it just went away about a year after Paul died. I think that was a physical symptom.​

Grief is really surprising, and I think it doesn’t feel necessarily just like sadness. I think grief can feel like anxiety or guilt or anger or whatever. I have found it really helpful to read and talk about it. I think I felt very, very lonely for about a year after Paul died. And I thought I would never not feel lonely, and then life has totally filled in since then in ways that I wouldn’t have expected. So I think some of it’s just about hanging on.

Lucy Kalanithi discusses “When Breath Becomes Air”​

Read the lightly edited transcript of the Facebook Live discussion.​

I also think that I am in so much less pain than I was before. But I certainly don’t love Paul any less. So it’s been really interesting to me. I wrote an essay in the New York Times about this. It’s called “My Marriage Didn’t End When I Becam​e A Widow​.” And it’s basically like my relationship to Paul, and the idea, and certainly my relationship with Paul’s writing and what’s happened with the book since he died. It’s been interesting to see how your feelings about somebody don’t go away after they die, and that’s been really comforting to me.

Marci A. Landsmann is the managing editor of Cancer Today.