Lucy Kalanithi is a doctor, a mom, and the widow of Dr. Paul Kalanithi, author of the bestselling memoir, “When Breath Becomes Air.” Lucy was at Paul's side through his final days, both at home and at the hospital. In this conversation, she reflects on how his death transformed her relationship to time, and how we make meaning in the world.
If you enjoyed this episode, we recommend this one from the archives: "Losing Dixie”
For a behind-the-scenes look at the show, follow @DrMayaShankar on Instagram.
Pushkin.
He got to the airport, He's like on the tarmac literally, and got a message from his doctor that was like, I can see nodules on your chest X ray, which means I can see tumors in your lungs and obviously that's really bad. And he turned off his phone. He flew back and then I picked him up from the airport and then he told me the message he had gotten and then I said, I will never leave you, and that was that.
Lucy Kalanathy remembers the moment her husband Paul told her he had terminal cancer. In that moment, Lucy says, she felt her future slip away, so she became hyper focused on the present. She decided that she would dedicate herself to helping Paul prepare for his death and make the most of his remaining time.
There is so much that people go through when someone's dying, Like in terms of decision making, is this what they would have wanted? What if? And like guilt did we do it right? Is this really it?
On today's show, when an unexpected death erases the life you'd imagined, how do you build a new one. I'm maya Shunker and this is a slight change of plans, A show about who we are and who we become in the face of a big change. I first came across doctor Lucy Klanethie when I read the book When Breath Becomes Heir. It's a memoir written by lucy husband Paul Kalanathi, who is also a medical doctor. He writes about his experience navigating a terminal cancer diagnosis in his thirties and his efforts to find peace with his impending death. Lucy wrote the epilogue for the book and helped to publish it posthumously. It was a finalist for the Pulitzer Prize. Lucy lost Paul more than eight years ago. Their daughter, Katie, was just a baby at the time. I wanted to hear how Lucy reflects on her life with Paul after all these years. What's changed since then and what hasn't we began with how they first met.
Well, I'll tell you, like the real story. It was kind of a scandal. We were in the same class in medical school and we only had one hundred people in our class, so it actually ends up feeling more like high school, you know, and everyone is like sitting on each other's laps basically all day every day, and it's really kind of intimate because you're doing anatomy lab and you're all like learning and a little freaked out. So anyway, we I at each other there and at first I was like, Oh, there's the smartest kid in our class, Like he was running this bioethics seminar on the side and it was just really smart. And then one day I sat with him at lunch and he was super funny and it kind of came out of left field for me. I was like, oh my god. And then I sort of became interested in him after that. And meanwhile, he had a girlfriend and so that was like a little thing to work out. I was like, you need to find me after you know what's going on with that. And then I actually won a date with him in an auction, no way. We had a fundraiser and his date was actually a shooting range nearby Yale, and mostly guys put their names in the box and I was like, I'm just going to put one and I didn't even want to go to a shooting range. And then he went on a trip to Barcelona with his girlfriend and was in like an internet cafe in two thousand and three and got this email is like, Lucy has won your shooting range date. And then he's like, okay, I guess this is done. And then I saved the thing forever. It was like one of those creepy like shooting range outlines and then shows like where you shot the persons. I hated it, but I saved it for a really long time and hung it on the wall. I love that.
I mean, I'm thinking back to when you know, I was trying to woo my husband, Jimmy, and I was willing to pretend that I liked philosophy more than I actually did. But you really you run laps around me in terms of your willingness to like show your interest in someone, because shooting range would have been out of it would have just been out of the question. Are we doing. Yeah, it's like philosophy paper, Okay, fine, I'll get into it. Shooting range never.
Yeah, I like hated holding the gun and stuff. I was like, I hate everything.
So I think the fact that you that reveals a lot to me about about your interests. True, yeah, your interest in Paul.
Like yeah, you know how it's just like you have a little and you're trying to feel it out, Like you're sort of like walking around each other like animals. I feel like in a circle, like what's going on with you? What's coming on with you? So we were in like that phase. We were kind of friends, but we sort of were like falling in love secretly, unbeknownst to each other. So Paul's Indian and I'm white, and we were walking on the street in New Haven and this person who was sitting on the street yelled out, love is colorblind. And I was like, oh my god, we're not even dating, but like this stranger I can see, and I just remember being like, it's a thing. And I was like, that's my dude. And then that was it. Wow. Then we're together forever.
So you and Paul ultimately get married, and about five or so years later things start to become a bit rocky in your marriage. Can you tell me a bit more about that period of time.
Yeah. Sure. We fell in love at the beginning of medical school and sort of grew up as doctors together and then moved to and entered our residencies. And residency is just such a grind. There's a work hour limit on how many hours you can work every week and the limit is eighty and then people stop recording their hours because they're gonna get in trouble for staying longer. And so you're super tired. You're like ships in the night on your schedules, working overnight all the time, sleeping in the day, going back, and so I think some of it was just we were like so tired not seeing each other that much. I was still learning, we were both still learning, Like I'm highly extroverted. Paul was introverted. He was really gregarious, but also introverted in terms of how we processed his feelings, and he needed some time to process. I would be like, I just told you everything about how I feel, like say something back. He would be like, and like, I felt like he was stonewalling me, but he wasn't. He was like processing and it honestly, we'd been married for like a few years. It took me a while to see that, and so we just sort of started like budding heads or feeling not seen during that time and not quite giving each other the benefit of the doubt, but like loving each other so much during the whole time. It was very confusing. And then we were entering academic practice and I'm an internest and he was a neurosurgeon, and neurosurgery culture is also just so intense and it stays like that forever. And I was just like, is this going to get better? And his mode was like, I just have to get my academic job. I can only think about getting my job. And then he started to lose weight during that time and started to feel sick during that time, and I was like, something's going sideways, but we weren't able to talk about it, and that was just really a rocky time.
Yeah, And what did you both describe those symptoms too at the time? Did you think it was just stress and burnout? I mean there's a lot of confounding variables there, I imagine totally.
Totally. Yeah, So we didn't quite notice initially, but he started having back pain, He's getting tired, and then he started to get some scarier symptoms like night sweats. Night sweats are kind of spooky medically, it often means something more serious is happening, like cancer, tuberculosis something. We kind of both knew that. And then he started to have a cough and then during that time, we were going to go on a trip together to visit his college friends. A whole group of people were going to convene in New York, and we were kind of in the middle of what's going on with our marriage, and we're both hurtying, and I said, I don't want to go on the trip. I'm going to stay home and think about things and take a breath. And then he went on the trip alone, and actually during the trip was when he started to get his formal diagnosis. He describes how he was like in a train station going to meet the friends and then was having this horrendous back pain. His back was spasming, and he lay down on a bench and then the security guard came over and was like, excuse me, sir, you can't be lying down on the bench right now. Sorry, you have to stand up. And he like almost said I can't. I'm dying of cancer. And he didn't even know that he had cancer, but it sort of came into his mind or like I can't I have cancer, Like something flashed into his mind and he's like, oh my gosh. And then he told a friend. He's like, I think I might have cancer, not the good kind. And his friend was like, well, let me bring you to the airport. I'll mail your bag back for you so you don't have to carry it. So then he got to the airport. He's on the tarmac, I think literally, and got a message from his doctor that was like, I can see nodules on your X ray, which means I can see tumors in your lungs, and obviously that's really bad. And he turned off his phone. He flew back, it's like on his five hour flight. And then I picked him up from the airport and then we drove home and we were sitting on the sofa, and then he told me the message he had gotten. And then I said, I will never leave you. And that was that.
I want to dig into your very immediate automatic response to Paul, like where did the clarity come from?
You can be so mad at someone and hurt and love them so much, and it's like you can do all those things at the same time in a marriage. You know. I always had this idea of like, oh, this is the thing we're going to do together. Like we love each other somehow, We've grown together. We know each other so well. We have this like language built around suffering because we talk about our patients all the time. We talk about life, and then it was like, oh my gosh, it's happening to us and turns out this is how it turns out. And then this other weird thing happened where we sort of suddenly gave each other this spaciousness because because things were so extreme, Like I remember saying, I was like, how can I help you? Do you want to travel around the world with your brothers? I was just like, literally like what do you secretly wish for? Because I like want to help you get it. It was so interesting, and then he was like, I only want to be with you.
So you tell him you're never going to leave him. What happens next? What are the next few days like in terms of getting that formal diagnosis.
Yeah, he got admitted to the hospital the next day for what's called expedited workup, which is like you go in and you get your cat skins and all the stuff done quickly in biopsy, and we went to the hospital and then we got admitted to the hospital room. We had like hospital credentials, right, so we could log into the computer and like look at the records, and he opened up the actual radiology images of the cat skin and you're like scrolling up and down through the films. You can see the spine, you can see the lungs, and he talks about this sat skin was different because it was my own, Like I had done this so many times for patients, and he would have looked at this one and like dispatched with it and like I hate do surgery in this case. And instead he's looking at his own terrible scan. And it's like, you know, part of being a doctor is like figuring out how to be a mediator, right, like how to take these images and then relay them to somebody to help give them context stuff like what this means and what it means to them as a person and in their life. And there wasn't any of that. There was just like bang, you know.
Ye.
Also, as soon as he was diagnosed, he was like this was so crazy. It was the same day he was like, I want you to get remarried.
The same day as the diagnosis.
Literally the same day. Yeah. It was so interesting because I was like, oh, he's saying so much. By saying that, he's saying I see what's happening, You see what's happening. I care about you and love you into a future where I won't even be there, and I'm going to say the whole thing out loud. It's scary stuff to talk about, and I think a lot of times people are really scared to admit to each other what's happening, or like try to hide it. And so somehow, amidst the spaciousness, it also was kind of stark between us in a way that was really kind of raw and honest, and then we sort of like filled that in with scaffolding once we were able to like come back down to earth, because it takes away and it takes like months to even feel like you're in your body or like you have any sense of how you might piece together a different future.
I am curious to hear more when you talk about opening up that space for one another, what did that look like for me?
I think I backed off of expectation. I was just like, this is so huge. You know, he's like facing this complete upheaval and identity. He's understanding that he's dying sooner than expected. And I wasn't in his face like tell me how this is going, how's it going, how's it going? Like what are you thinking? You know? I was just like I am going to give him space and he'll talk to me sometime. And he started whispering to me in the middle of the night. He'd be like, I don't want to die.
Wow.
And then we would just be together under the blanket. And so I think I just instinctively gave him space, and then he sort of came to me, We'll.
Be right back with a slight change of plans. Lucy Kalanathy and her husband Paul, met in medical school. They'd been married for seven years when Paul found out he had terminal cancer. Their daughter Katie hadn't been born yet. They were just two young doctors focused on their careers. I was curious to know whether their jobs as medical professionals affected how they processed Paul's diagnosis. As doctors, I mean, illness is front and center. You know, you engage with suffering, dying, and death constantly, even though you can never imagine what it's going to feel like when it happens to you. Do you feel like that exposure maybe helped foster faster acceptance in both of you, or made you feel more prepared for this moment or what was to come.
Yeah, I think absolutely, and I think some of it was special to Paul just as a person, because he had actually never thought he would be a doctor. He studied English literature and then did a master's in bioethics and thought about being a literature philosophy professor, and was very interested in thinking about mortality and meaning. And then I think he wrote this interesting thing in his book where he says something like people ask themselves a lot why me, And he's like, I think a more helpful question, or maybe a more apt question, is why not me? And I think there's nothing that would exempt any of us from suffering of some kind and being doctors and just seeing so many seemingly unfair things happen to people all the time, Like as a neurosurgeon, it's literally like tumor, trauma, aneurism, all kinds of various neurologic disorders that totally screw with your identity and your sense of meaning. And so we had thought about it before, which I think helped somewhat. And then it was like, oh, my God, turns out this is our life too, which is not easy, right. It's sort of like you zoom in and out. It's not like he was like one and done acceptance. There was like luck on the first day in terms of acceptance, and then you just have to keep wrestling and pinning it down or letting it go and pinning it down right, meditating and getting it down. I'll just say an interesting thing about Paul, because it was so him. We were packing to go to the hospital, and I was like, insurance card, fuzzy socks, phone charger, We're going to like walk into this situation where he's going to find out he has terminal cancer. And then he packed books and he took like he took Being in Time by Heideger, this book called Mere Christianity by C. S. Lewis, and then a novel by the Russian author Sulsanitzen called Cancer Ward. Gosh, it's like this little like religion, philosophy and literature. And I was like, that is so interesting. Like he didn't take like medical textbooks. He's like, what I'm going to need, here's books.
It says to me that he didn't see his sole job as simply fighting cancer.
In that moment.
It feels like he was continuing the project of finding meaning making in his life despite all the stuff that was going on around him.
Yeah, there's a lot of things you could fight for right, You could fight for being able to do something you really love, or like fight to stay home or fight to have your family be okay after you go. And then I also think dying is a thing that people do. It's really hard, it's hard to get your head around, it's physically hard. And he thought a lot about how do people think about dying? And I think for him, encountering his mortality and going through that process pretty unflinchingly was a thing he was trying to do in his life.
Yeah, I mean, it feels like his desire to, like you said, find peace with his mortality, his desire to find meaningful things to occupy the remaining time that he had on this planet, expressed itself in many very impressive ways. I mean, he returned to his work as a neurosurgeon, he wrote a memoir, and I think the biggest choice of all was ultimately you both decided to even have a child during this period of time.
So despite all that we've talked about with having these challenges in our marriage, we had also been planning to have a baby around the same time, like that was swirling around, I mean, very soon after his diagnosis, we thought about it because we had to go to a sperm bank before he started treatment, and so we thought about it in different ways. I think he was more certain than I was at the beginning he really wanted to have a child. I was worried that it was just like the potential for more pain and uncertainty. I was like, whoa, that's like a whole uncertain process. And then the other thing I was scared of was I was worried that it would just be really painful for Paul, like as he got sicker, if and when he got sicker, like to say goodbye to a child, It's just like that's bananas, And how could you choose that? And so I was like, don't you thinks it's going to make this way harder for you? And he said, wouldn't it be great if it did make it harder? And that was like totally crystallizing for me. There's a million things we do in our lives that do not make our lives easier, you know, everything, Yeah, climbing a literal mountain just to get to the top and go back down. I mean like everything that's meaningful. And so nobody's having a kid because they think it's going to be easy, like that's not a thing. So and then our family was really into the idea. My mom was worried about me, but we just had family support to think about it. And so then yeah, we had our daughter and she was born eight months before Paul died.
M What was it like to prepare for Paul's death?
I should like think about it. Actually, at that time, he was like furiously writing when breath becomes their, like he had his editor and his literary agent and so like his body was like declining and collapsing, and then his like mind and focus on writing was like accelerating basically up until like the last three days.
Wow.
And so it felt like it was really weird contrast, and then there was like a ton of logistics around it. And then it was just painful, I mean physically but also just like really sad. Yeah, I talked to my mom. I was like, I think I kind of have to be planning his funeral and I'm like watching him sleep at the same It's just like a lot, but it was like a beautiful time too. We're together, Katie's there, the family was definitely like around all the time. It just felt really like saturated, like we do so much wishing away time. I mean I do this all the time now, But when Paul was dying, it's like I had no idea what it was going to be like after and I knew time was short, and so did he. And so you're not wishing away time. You're not like, ugh, can't wait till this baby sleeps through the night or whatever, you know, like, oh, what's her future doing to graduate from high school? There was none of that. It was just like we're here with the tiny baby, and everyone loves each other and that's what's happening. And so that's sort of how like mindfulness is good for your brain or good for you. It's like there is only now.
Yeah, yeah, can you bring me back to Paul's final day? What was that final day like with Paul and Katie and the rest of your family?
Yeah, I mean the final day had a lot of medical stuff going on, which was so confusing to figure out even as doctors, right, because you're always working with limited information, especially in his situation, like is this really the end? He was really sick, we were thinking about entering hospice, and then he got really sick suddenly, and like couldn't breathe, and then he sort of he had to make this important decision. He was lucid enough to make it. So a lot of the time when people are this sick, they actually can't decide this for themselves, but he happened to be able to and was awake enough, so he didn't want to risk going on a ventilator and being in a coma and having us have to make a difficult decision about when to stop. He just was like, we have seen that enough, and I think he was like, that is not for me. He looked at me and said I'm ready, which was like, oh, it's going to make me like burst into tears. It's like, gosh. He really was like I'm ready, I'm ready to stop. He was like, I actually just want to go home. Can I go home? That was part of it, like can I go home? I know I'm dying, but could we get home? And he was just like, way too unstable to go. He couldn't transferred to an ambulance. He really might suffer and die on the way home. In a way that just wasn't going to work and it wasn't worth it. And I was like, how can we make it feel like home here, and he was like, Katie needs to be I mean, it was obvious. It was obvious Katie needed to be there. And then he had to get some morphine ahead of time because it helps you feel better when you assure a breath, and then he kind of went to sleep, and then he was sort of unconscious for about nine hours and then took a last breath. I was surprised how hard it was, even with him awake, to say what his preferences were, even with us being doctors, to really get a sense. There is so much that people go through when someone's dying, Like in terms of decision making, is this what they would have wanted? Is this really it?
What if?
And like guilt? Did we do it right? I just feel like all you can do is do your best, you know. I have so many patients who are like, I don't know if we decided right. And actually he hears like a line that Paul said that really helps me with that same thing. He knew that I would be really trying to make decisions on his behalf if he couldn't speak for himself, and he was like, maybe it goes sideways, right, even if it's not the way you would have wanted, or you think it's not the way I would have wanted. The last day of your life is not the sum of your life. The sum of your life is the sum of your life. And it was so helpful, right because it's also like it's the last day, but it's just a day. It's kind of like the last day of anything is not the last. The end of a relationship is not the whole relationship. That was really helpful. Doesn't all come down to the end.
I love that. I thought for so long that as a society we tend to overweight the deathbed regrets, the deathbed wishes, the deathbed feelings, and yeah, it's just one day, and so I really I reson. I don't think it's it's not discounting final moments, it's just saying maybe we ought to give them similar weight to all the other moments that preceded them. Yeah, you know, I know you had said like you couldn't even imagine what it would be like in the days following Paul's death.
Yeah, I mean it was so hard. It is so crazy when it's like I knew he was going to die, and then still when he died, it was so shocking. It was like he was here and then he disappeared. It was that shocking. It's like he disappeared. And for six months, I like still had his shoes next to the front door, and he still had like a sock drawer in a bookcase, and I just like didn't want to change anything yet, and I was like, someday I want to, Like today it's not that day. And same thing with taking off my wedding ring. You sort of like molt over time, and I like really felt it physically. My hands were like burning and tingling. For a long time. I thought maybe I had some like neurological disorder. I was like, oh my gosh, what if I can't work and take care of me and Katie. I had all these catastrophic thoughts, and I really think that was actually just like a physical manifestation of grief. And then it ultimately just ended up being really helpful for me to work on Paul's book. I had to like work on it. It came out nine months after Paul died, and I was like really involved with the editor, everything from approving the copy edits, to writing the epilogue to like putting these other essays that he had written to supplement pieces that weren't finished yet to choosing the cover, So that was really helpful.
And do you feel that that was Is that something you learned from Paul, like the importance of meaning making and how that can that can help heal?
Yeah, I mean totally, I think, and like a lot of people going through something hard or who lose somebody or whatever like end up making something out of it that they never would have wanted to or wanted to have to. But I really like the book Man's Search for Meaning by Victor Franklin. It's all about building meaning and how meaning itself is sustaining and meaning itself is life giving in a way. He quotes Nietzsche who says he who has a why to live can bear almost anyhow. And it's sort of like Maslow's hierarchy, like turned upside down, right. It's like, if you have meaning, you can actually handle a lot of destruction around you because you have something to live for. But I think that's why these upending transitions are just so impossible, because you know you have this idea of who you're going to be in the future. Paul thought he would be free of illness. I thought I would be free of losing him. And I think when something so unexpected happens to you, you have to like rebuild an identity and rebuild meaning, and that takes a while, and it's like totally disorienting during the time that you don't have it.
Yeah, and I think, you know, on a related point about the visions we have of the future, I think one of the many reasons I was so eager to talk with you for the show is that listeners can learn so much from you about what your grief trajectory has been.
Like, Yeah, I mean, immediately after Paul died, I had a couple of anchors. It was like I had to take care of Katie, I had my job as a doctor, and I was working on Paul's book and the old Like it's like those things were just keeping me on earth, like keeping me on the ground, right, not just like floating. And then I feel like things started to fill back in, and like, since Paul died, I've fallen into love again and out of it and built my career in new ways where I've done a lot of work on things like caregiving and end of life care. And so I don't know, it's like things surprise you and feel their way back in back in.
Yeah, how would you describe your relationship with pain and suffering and how would you describe your current relationship with Paul.
Yeah, Sometimes we think about sufferings like it's this kind of like thing on the side that like, hopefully I won't have to do that much. I feel like I'm sort of like you're offering is a feature, not a bug. It's like everybody will have some kind of suffering. There's like no such thing as an uncomplicated life. And you know, I think one of the things I like that Victor Frankel says is he talks about how there's three places where meaning comes from. This is his formulation, but I like it. He's like work is one of them, love is one of them, which is like love for a fellow human beings, but also like gratitude, loving being alive. And then he's he's like work and love and suffering, and he's like suffering itself. And the way you respond to suffering can be meaningful, whether it's like you're working on injustice or you are proud of yourself for something you got through, or the pure fact of enduring suffering can be meaningful, and that resonates with me a lot. I think suffering can be tied to meaning, But at the same time, I think it's certainly not up to anybody else to tell you what the meaning of your suffering is. It's like only yours, and it can take a long time to figure that out. And some suffering I think doesn't have meaning. It just sucks. And then my relationship with Paul, I love Paul. I love Paul forever. My sadness has lifted some and my love is exactly the same. I think it'll always be like that. I feel proud of him. I feel like he's my family, He's Katie's dad. He's just sort of like in the mix. I think he's around, He's just part of my life. And hopefully I'll fall in love again. I really believe in love right now. I believe it'll like find me on my sofa in a pandemic. That's how much I believe in it.
Hey, thanks so much for listening. Make sure to join me next week when I talk with doctor Richie Davidson, a pioneer in meditation science. He walks us through some fascinating research on meditation like his study on the world's most experienced meditators. I'm talking like thirty four thousand hours of meditation. It turns out they experience pain totally differently than the rest of us. Stay tuned for more next week. In the meantime, if you're interested in hearing another story of someone navigating grief, check out our episode Losing Dixie. In it, I speak with my family friend Quinn Lewis, who lost her teenage sister in a tragic accident just months prior. She gives us a rare window into what it looks like to be in the acute phases of grief, and I learned so much from our conversation. I'll link to it in show notes. A Slight Change of Plans is created, written, and executive produced by me Maya Schunker. The Slight Change family includes our showrunner Tyler Green, our senior editor Kate Parkinson Morgan, our producer Trisha Bobita, and our sound engineer Andrew Vestola. Louis Scarre wrote our delightful theme song, and Ginger Smith helped arrange the vocals. A Slight Change of Plans is a production of Pushkin Industries. So big thanks to everyone there and of course a very special thanks to Jimmy Lee. You can follow a slight change of plans on Instagram at doctor Maya Schunker, See you next week.