A Sense of Purpose

[Beginning of Recorded Material, edited lightly for conciseness]

Cancer Today: Hi, I’m Marci Landsmann, senior editor of Cancer Today, a magazine for cancer patients, survivors and caregivers. We are published by the American Association for Cancer Research. And we are joining you here today from Philadelphia. Each quarter, we pick a book, as editors, that we think will be of relevance to cancer survivors, patients, or even caregivers. And we pick that book so that people can discuss it in our Facebook group, and we do that to increase the conversation.

This summer, we have been discussing When Breath Becomes Air, which is by Paul Kalanithi. This memoir was a New York Times bestseller, and it talks about Paul’s experience as a physician and then also as a patient with stage IV lung cancer. Paul was 36 when he was diagnosed with lung cancer.

Today, with us, we have Lucy Kalanithi, who is a physician and who also wrote the final chapter of When Breath Becomes Air. Lucy was married to Paul, and the couple decided to have a child after Paul was diagnosed with cancer. Her daughter, Cady, is 4, so Lucy is also a mother. And she also cares passionately about talking about patients’ values and trying to factor that into end-of-life decisions.

I’d like to welcome you, Lucy, to our discussion.

Kalanithi: Thanks so much for having me. And thanks for including Paul’s book as part of this series.

CT: Thank you very much. I’d like to just start with a question that I had, which was about the book in general. I understand that you read it, obviously, throughout the whole process. Did anything surprise you about what he wrote, either during the beginning process or even after when re-reading it?

Kalanithi: Yeah, I guess a couple of things, besides just the fact of it being possible. I was reading the manuscript in kind of real time—every day, every week as Paul was writing it—and it was a very useful tool to communicate in our marriage. It was almost like reading someone’s diary and then getting to talk about it. So that was useful, especially because Paul was kind of introverted, so he was sort of processing internally, and writing was a way for him to cope.

And then I think just the utility of actually writing it … when you’re diagnosed with a serious illness or even with things like aging or disability. Paul wrote about this moment of diagnosis where the future that he had imagined for himself just evaporated in this one instant. And I think that really was the feeling. I think there’s the pain of facing your own mortality, but then also what a serious illness does to your identity and purpose. And I think once Paul was too sick to work as a neurosurgeon and had fortuitously transitioned into being a writer, having that sense of purpose and connection, and even conceiving of this legacy that might outlive him, was really helpful for coping. I like to quote this thing that Nietzsche said, which is, “He who has a why to live can bear almost any how.” And I think that really matters, and I think about that with my patients: What’s most important to them, and how can I help them sustain a sense of [purpose]?

And then I think people who’ve read the book have seen how much words and literature mattered to Paul. And he’d been an academic guy who studied philosophy and literature, but then became a doctor because he wanted to enter into the practical decision-making and really human personal problems. Then, when he became sick, he actually became a reader and a writer again. Having a way to put words on it, to step back and try to analyze what was happening, also let it feel not so overwhelming.

CT: In this 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: Yeah. 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, as we said, she is now 4. It seemed a little crazy actually, and both ​ of us kind of knew it was crazy, and he was more certain than I was initially, and both of us knew I’d probably at some point be raising her on my own.

And he 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, if you are sick and, you know, 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. And then I also read the book, Far From the Tree, at that time. Do you know that book by Andrew Solomon?

CT: I’ve heard of it.

Kalanithi: It’s beautiful. Now there’s a Netflix documentary of the same name. And it’s about raising a child under some kind of arduous circumstance. In this case, where the child was really different from the parents, things like deafness or autism or committing a crime or whatever.

I read it because I just wanted to see what the hardships could be when you have a child. The upshot of the story that even surprised the writer, Andrew Solomon, was just how much people can cope with adversity in really surprising ways or can come to accept a life that they never thought they would have. And so it actually turned out that book contributed to me feeling like it was possible to cope with having a kid. So that book helped.

CT: In the moment when you were having Cady, what was that like? Paul had just recovered from his illness, and he was going home from a doctor’s appointment, I believe, and came back. How was that on your end in terms of, what were you thinking, I guess?

Kalanithi: It was so intense. 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 because he was really weak after this hospitalization. So, my mom was my labor partner person, 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, and it was fantastic.

I don’t know, it’s so hard to describe. 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… even though he was more physically debilitated. 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.

But then, for me, personally, my sister is a blogger and writer who has had really severe postpartum depression two times and has written about it, and I was very worried about depression particularly, and so we were really careful. Paul really looked out for me, and I made sure I was exercising after Cady was born. We tried to make it so that I could sleep as much as possible and just be able to cope. I was nervous about that. And, in particular, depression, just because you’re emotionally detached and alone when you are depressed. I was really worried that with limited time for Paul, how would I care for him and how would I make the most of that time? But it turned out to work OK, and I think we’re really lucky for that.

And I think for me, the things that helped me cope, the last surgeon general did this whole thing on emotional well-being as distinct from mental health and promoted things like exercise, mindfulness meditation, sleep and social connection. It’s not rocket science, but it helps to focus on these things. Paul told people around us, he 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: OK, it looks like we have a comment or question. Let me just take a look at it. It says “Paul wrote about asking for statistics on his prognosis from his oncologist Emma, and about her resisting giving these. What role did statistics play for you as a doctor and a wife in understanding Paul’s lung cancer, and how would you advise that patients think about statistics and prognosis?”

Kalanithi: So, this is such a good question, and I know everybody struggles with it, and we did. I guess in no particular order I’ll start.  I like some of the things Paul said in his writing, one of which was something like: Trying to calm existential distress with statistics is like trying to quench your thirst with salty water. And that’s part of it, right? With statis​tics, if​ a doctor ever says you have 15 months to live, Paul described that as being more precise than you can be accurate. Which is to say that usually means the median, so that usually means half the people would live less than that and half the people would live more. But it doesn’t tell you of the half that live more, how long, how much longer they live and then where do you fall in that curve?

The way I was taught to prognosticate when I was a resident physician was basically to think about a general range that you can tell people. So for most patients, we have a kind of an idea of whether they might live days to weeks, or weeks to months, or months to a few years, or many years. And those ranges are not super-specific, but I think for Paul, we both had the general sense that he—that most people with his particular illness—live months to a few years. And with new treatments, some people are living multiple years.

That’s enough information to know whether you want to try having a baby or to know that you are hoping for the best, but you also want to put things in place in case the worse comes to pass. We can’t really prognosticate very well. But I think you can have a sense and a range in many cases.

It’s interesting because there’s research showing that physicians are also really uncomfortable talking about it or asking​ or bringing it up. Sometimes it’s on the patient’s or caregiver’s shoulders to ask, which I think is important to remember​—that it is OK to ask and, at the same time, it’s really hard to be specific.

So—and then I think the cool thing about cancer and the hard thing about cancer—is that prognosis is getting more difficult. So even for stage IV cancer with novel therapies, like the little group who responds really well to immunotherapy or the targeted therapies for lung cancer like Paul took—he had an EGFR mutation and was on erlotinib—some people are living longer, and for subsets of cancer, it’s starting to turn into a chronic disease. For most people with advanced cancer, not yet, but I think there’s even more uncertainty now. I hope that answers your question. I struggle with this a lot.

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, and I think you might have talked a little about that in the beginning, but can you elaborate a little more on that?

Kalanithi: Yeah. 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 kind of work-life balance. Paul was a resident working over 80 hours a week, and I was working really hard too. We kind of joked about it at the time. He surprised me. That actually was the thing that surprised me, when I read that he was writing a little bit about it, I was—you know when you’re a third-grader and they teach you to write a story, and they say start with a catchy intro. Thanks a lot for the intro to your memoir, this marriage difficulty for us. And now I know all about everybody else’s marriage because people now tell me.

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: We talk about Paul writing the book, and I am just curious as how that worked from a scheduling thing. Paul kind of went all-in with everything. How was that with balancing a new baby and your marriage and dealing with all of these issues? And then writing as well, was there a tug or pull at any point with his time or how did you guys manage that?

Kalanithi: I’m not even quite sure how to answer it. Paul went back to work working as a neurosurgeon for a year and finished residency, which was really important to him and his identity, and the targeted therapy chemo pill made it possible. Then, when that stopped working, he focused on writing instead. Cady was born around the same time that Paul really started writing in earnest, and he mostly wrote in our living room, and I was just kind of around on maternity leave. And Cady was there obviously and a bunch of family were around, and I think that for a lot of people having a newborn is a lonely time, especially if one person is home and the other one is back at work. And for us it was such a cozy time, and the act of writing was kind of social in our house, at least by proximity. Actually it was really cozy and nice.

And tying back into the prognosis question, you know this was really hard, but I think Paul sort of had a sense in his mind of how he might react and what he might prioritize depending on how his prognosis was changing. So when he first was diagnosed, there was a possibility that he might still live multiple years, and so he wanted to continue to be a neurosurgeon. And he knew that when the most effective treatment stopped working, he wanted to focus most on writing, and then as the disease progressed, he started to focus less on writing and more on spending time with family. He had a bit of a sense of what his top priorities would be, and that I think was clarifying and helpful even though it was obviously also painful.

CT: Do you have any tips for people who are caring for people who are ​facing a late-stage disease? ​

Kalanithi: Yeah, 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. I’ll just explain what it is quickly for people who don’t know.

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 the 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 or whatever. So, a lot of people who have things like Parkinson’s or heart failure or different types of cancer or HIV or just whatever. 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.

I actually think that if you redesign health care, it might actually start with palliative care because the quality of life, no matter how much longer you have, is part of what we are all looking for. There’s at least one study where patients with advanced lung cancer who had their oncologist and a palliative care team had better quality of life and less anxiety and actually lived longer, even though they used slightly less intensive medical treatments in their choices.

I think they really help people live as well as possible for as long as possible, and they’re just great. One tip is to ask for a palliative care consultation or specialist. And then there’s a website called getpalliativecare.org. It’s the Center to Advance Palliative Care.

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. I think, don’t forget to take care of yourself certainly.

CT: We received another question. This Facebook user says “Hi Lucy. Thank you for your time. Although the outcome of this book is obviously sad, the tone of the book is not. I felt like the combination of the simple but lyrical language and the medical information kept it from tipping over into being a tear-jerker. Was that intentional? Was that how he was? Or was it just a matter of my perception?”

Kalanithi: Oh, that’s such a nice question. Thanks for saying that. I think it’s not an accident, and that’s sort of what Paul would like.

CT: You wrote the final chapter of Paul’s book. You’re his advocate, and I recall you saying [in your recollection in the book of his final days], that if this isn’t going to work, then we need to take off the mask and have Paul hold Cady. 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 that 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. I think we’ll all lose what we love. It’s so hard.

Yeah, so 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.

Yeah, so I think that’s an important thing. And I think having an advance directive is really important, the paperwork. But in a way, an advanced directive is actually really simple. That paperwork came out of the patient autonomy movement where you as a patient have the right to refuse medical care that you don’t agree to. And an advance directive, I think, came out of a court decision saying someone you designate to act on your behalf also has the right to refuse medical care for you. But that’s all it does.

When you sign that piece of paper in your lawyer’s office, it basically says, if I’m definitely going to live, then let me live, and if I’m definitely going to die, then let me die. But it doesn’t give you a ton of information in between, as far as who you are as a person and what’s important to you. So I think those things, like having clarity for yourself and talking to your family and just having somebody there who knows you really well, that’s the thing that’s really important.

CT: Now, as a physician, you talk with a lot of different patients and probably different personality types. In your experience, do you think most patients or people in general are equipped to sort of bring up those conversations when they’re facing something, like terminal disease? Obviously, you guys were physicians and you’d talked about this previously with your patients. How do you think that understanding is in the general population?

Kalanithi: I think most people are probably technically equipped, you know, potentially can do it. I’ll recommend some books, actually. I think there is a whole cultural milieu, right, the battle metaphor is so prevalent. It’s so hard to talk about cancer without using the words battle or fight. After Paul died, there was a local newspaper that published a story that said “Stanford neurosurgeon succumbs to lung cancer.” I’m like, he didn’t succumb to lung cancer. He died, but he didn’t succumb to lung cancer. And I think  that language is too simplistic. So I think there are a lot of taboos in our society about talking about this stuff, and it’s just scary and anxiety-provoking, of course. And I think in this particular moment in history, like, dying and even just suffering are so hidden. Things are, they’re just kind of hidden in a way that they haven’t been in all history, I think. So I do think it’s incumbent on patients and families and certainly doctors or nurses to talk about what’s possible and what’s not possible, even when that’s really hard.

And the books that I really like that help put some language around this and help people clarify how to navigate the health care system, I really like Being Mortal by Atul Gawande obviously. And then I like a book called Living With Cancer, by Vicki Jackson, who’s at Massachusetts General Hospital, and it’s super-great and insightful. And I also like a book called Life After the Diagnosis by Steve Pantilat.

CT: Well let’s talk a little about grief. What has helped you in the years since Paul’s passing?

Kalanithi: Yeah. I was pretty crazy 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, but in retrospect. 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. In the book, Paul talks about how his mom actually had seizures after her own dad died. So I think, just to put it out there, the physical symptoms are really real.

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. There’s also a website and book called Modern Loss by Rebecca Soffer and Gabrielle Birkner. It has all these essays by people going through grief in tons of different ways, so I have found Modern Loss to be a really nice resource.

I’m in a Facebook group called Hot Young Widows Club, formed by Nora McInerny, and that is also amazing and super-honest and funny. Anybody who lost a partner young, Hot Young Widows Club is really good. There are now men in it. I mean it talks about everything from grief to dating again. It’s great. And people’s partners have died from everything from cancer to suicide to overdose to other illnesses or accidents. … 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.

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 Became 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.

CT: Is there anything else that you wanted to add that you think will be important to the discussion? Something I didn’t ask that you think is important to share with patients or survivors or caregivers?

Kalanithi: Not necessarily. I think, I wish I could ask people for any resources about raising a kid who’s developing a relationship with somebody who’s not alive anymore, grandparents or sometimes parents. I’m always looking for advice or books about that. I made Cady a book about Paul so she could read it and learn about him. She actually said something really interesting the other day that I’ll just share. I have a little bell in our house that was among some party favors from our wedding. She’s ringing the bell, and I said, “That was a part of my wedding to Daddy.” She said, “Oh, was I at that wedding?” I was like, “No, you weren’t even born yet.” She said. “Oh, I was dead.”

I said, oh, that’s so interesting. Cady’s own conception of nonexistence. She was dead and now she’s alive, and later people are dead again. It’s just so interesting to have a child that is a little bit exposed to these ideas. We go and visit the place where Paul is buried pretty frequently. She has no idea what a grave really is. She’s sort of growing up into that. So thinking about how to raise a resilient kid is different from thinking about how to raise a happy kid and protect her from pain or completely insulate her from that. I don’t know. I wish we could do a whole session. Maybe at some point, you’ll do a book club on supporting kids through this. I’ll be a viewer at that time.

CT: Yeah, we’ve actually just recently published a few things online.

Kalanithi: Really?

CT: But not after the fact, basically about dealing with the discussion with a terminal diagnosis.

Kalanithi: That’s so good. That’s so important.

CT: One of the patient advocates, Adam Hayden, has brain cancer. He actually has a background very similar to Paul. He’s very philosophical and he talks about talking to his kids about it. We can definitely always use suggestions.

Kalanithi: ​ I think I might have seen him on Twitter.

CT: OK​, well we’re a little over time, but I want to thank you for spending time with us this afternoon. It’s been wonderful getting to know you. I did want to announce too that we’ll be talking about the book through the end of September, and on September 24 we’re going to actually have a new book, which is Extreme Measures: Finding A Better Path to the End of Life, and that’s by Jessica Nutik Zitter. And I also want to thank you, Lucy, for taking time from your schedule to spend time with us today.

Kalanithi: It’s my pleasure. Thank you so much, Marci.

CT: Thank you. Bye, bye.​

[End of Recorded Material]