Episode 45: Precarity for Infinity
Life is, by nature, precarious. None of us knows when our last day will be. But if you’ve had a life-threatening illness, this truth feels a lot more real. On today’s show we discuss the way that you never really lose a sense of life’s precarity after cancer.
SHOW NOTES
Sources and Further Reading:
You can reach out to us here with questions, feedback, or to share your story
Emily P Freeman’s The Next Right Thing guided journal, book, and podcast
Kate Bowler’s book “No Cure for Being Human”
TRANSCRIPT
Kayla 0:09
You're listening to the My Sister’s Cancer podcast. I'm Kayla Crum, registered nurse and writer.
Ella 0:15
And I'm Ella Beckett, social worker and cancer survivor.
Kayla 0:20
We're sisters on a mission to care for the cancer community through the sharing of real life stories, a sprinkle of sass, and lots of support.
Ella 0:28
Join us in a new kind of pity party. It's a pity so many of us carry the heavy burden of cancer alone. So let's make it a party and carry it together.
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Ella 0:42
Welcome back to the My Sister's Cancer podcast. We're so glad that you're here today. We are going to be talking about precarity and how, especially when you've received an earth-shattering cancer diagnosis, your life feels very precarious. We're going to be sharing, of course, from our personal experience with my two different cancer diagnoses and journeys, but also just talking about the precarity of life in general and how maybe a lot of us try to avoid that reality. So, Kayla, I would love if you could start by sharing maybe some of your personal experience with the notion of waiting for the other shoe to drop.
Kayla 1:32
Sure. This topic is close to my heart because I feel like it's one of the biggest things I've struggled with in the aftermath of your cancer. It's one of the things that has taken the longest for me to reckon with, and I still don't think I've totally eradicated it. And that's kind of part of the package, is you never really get rid of the fear, I think, of the precarity of life. But I've done a lot of work with my therapist and such to not let it, like, run my daily life, so to speak. So what we're really talking about here is, yeah, waiting for the other shoe to drop. So interestingly, after your first cancer when you went into remission, I think we all kind of just expected that that was that. And rightly so. I mean, we were told that it was gone. And it had gone according to plan. It was supposed to be a four-month chemo regimen. And it was… I was graduating college and getting married. And so it was like there was plenty else to fill my plate. And so although it was really traumatic for all of us, we were like, okay, like we did it. And then when you relapsed not even a year later, that's when I really felt like the rug had been pulled out from under me. That's when I started having problems with God, which I've discussed on this podcast before. It certainly didn't help that I was a brand new nurse working the night shift and a brand new wife; like a month into my marriage and my job is when you relapsed. So I'm sure I wasn't in, like, the greatest mental health space, um, to cope with it. But it was that feeling that the other shoe dropped that like, somebody was like, “Just kidding.” Or like, cosmically even God: which, I don't believe this about God's character, but it felt like some mean trick or like something like that. And then I couldn't shake that feeling even after you went into remission, then, after your transplant like a year later. That feeling that, “Well, she was in remission before and look how that turned out.” And I just never was really able to accept your second remission I think. Part of it, I think, was good in the sense that we as a family were not as quick to think we could jump back to normal life and hit the ground running, you know. Even just the nature of the transplant forced like a slow reentry for you into anything close to normalcy. And we had learned the hard way, I think, the first time that like, oh, uh, we have a lot of mental stuff to work through now that we're out of survival mode. Interestingly, survival mode, meaning during treatment. But now we're in survivorship mode. And it's like now's the time that our bodies even are going to start working through some of the trauma we've been just tolerating. So in a way, like, I think it was good that our family was a little more realistic about that the second time, but then I just couldn't get out of that stage for years. I developed physical symptoms of anxiety, which I've discussed on this podcast before, and a lot of that was tied up in this hypervigilance, um, feeling on edge and like keyed up all the time, as if me somehow being alert and aware of everything around me could prevent, like, your cells from multiplying. Like when you say it like that, you know it's not logical. But I think some fundamental belief I had about the universe had been shattered. Like, I just think for some reason I, I was like, yeah, bad things happen to good people. Like, I understand that that's why Ella got cancer. But then when you got it the second time, I was like, well, this crosses a line. And I just couldn't shake that feeling of injustice and fear that if it can happen again and that the remission could have been quote unquote fake, you know, then nothing is guaranteed is how it felt. Did you have any sort of similar feelings, um, or was there not as big of a difference for you between the first and the second times? I'm curious how you experienced that.
Ella 5:57
You know, it's a really interesting question because I was resonating a lot with what you were saying, I think, and we've said it before. Right. I think the second time was worse for a multitude of reasons. I think what you said about the relapse feeling like a trick was absolutely accurate. And I think it just made me very cynical. I mean, understandably so, right? Like you were saying, oh, but you were in remission before, so like, you know, why now is it back so soon after you said it wasn't going to be? You know, there were so many… questions and feelings to kind of sort through. I think, after the first time, you know what you were saying about being hypervigilant all the time? I especially struggled with that, I mean, I think both times, but like, I was always that way about my body. And I think a big piece of this is that I was the one to find the lump the first time. Right? And, um, I would almost obsessively, you know, check my body from head to toe, really through the whole process. Um, but then, you know, honestly, like, I was the one that then suspected the relapse because I found some smaller lumps that were not as alarming or concerning as the first time around. But it was that hypervigilance that I was almost daily, maybe weekly, checking my body to make sure, you know, that I was okay, that there wasn't any lumps. And then that feeling of, oh my gosh, like, could this be it again? Right. Like. I just will never forget when I first suspected the relapse, because I felt some of those small lumps around my collarbone this time. And I will say, I remember this too. When I brought it up to my care team. They were, I don't want to say extremely dismissive, but it was very much… I think they were trying to comfort me and make me feel better. But they essentially were like, oh no, we think that's just your immune system, like, restarting up. Like the odds are so slim that it would be back. You know, they were very um, yeah, I guess dismissive is the word to use there. And in some ways, I think that really messed with my brain because I was like, no, like, I know my body, right? Like I found it the first time, I'm suspicious that it's back and to be told like, oh no, it's okay, everything's fine. Like your lymph system is just restarting, like this is to be expected and to have to like, advocate for myself. I think that was really hard too, because then it made me almost like doubt my intuition. Um, that was a very long-winded answer to what we were talking about. But…
Kayla 8:57
No, I, I always get long winded; people—listeners know that. Thanks for sharing that. Do you still feel that urge, or do you maybe still as a routine, like, check your body in that way? Or has that lessened over the last six years since you were in remission?
Ella 9:15
It's definitely lessened, and I'm really grateful for that, because I think that's one of those things that can be really all consuming, right? Like you talk about the fear and the anxiety and the worry. It's like, understandably so. Like that was very triggering to me to find, oh my gosh, are these more lumps. Um, and I think I'm really grateful that that isn't a huge thing that just like consumes my life anymore. And I think a big piece of that is just the time. Right. And the, the confidence in the treatment, the transplant, the further out we get. Right. Like I feel more at peace, I guess, the more time goes on, but that was definitely something that I did quite frequently.
Kayla 10:03
Going back to that concept of dropping the other shoe, I just looked up this quote that came to mind while we were talking. It's from The Next Right Thing Guided Journal by Emily P Freeman. She's the author and podcast host of the podcast The Next Right Thing. She has a book, The Next Right Thing. But this is the guided journal, and she just intersperses little thoughts throughout the journaling prompts. Um, and this one I remember—I've been using this journal now for like three years, and the first year I remember this really hit home for me, particularly because I was still, I think, working through some of that hypervigilance and cynicism at the universe, at God, however you want to frame that. And so she says here, “God will not shame you into better behavior. He will not trick you. He will not tease you. He will not laugh at you. He will not terrorize you. He does not pull rugs out from under you. He does not drop the other shoe. He does not pull fast ones. He will not roll his eyes, throw up his hands, or turn his back on you.” And yeah, I underlined the “He does not pull rugs out from under you. He does not drop the other shoe,” because that just had honestly been what I felt like, uh, when you relapsed. And I think that, like I said, I just thought that there was some sort of guarantee that there's not. Even if you look at the apostles or whatever, the people that followed Jesus, and see most of them died pretty horrific deaths after Jesus went back to heaven. And it's like, yeah, following God or like being a good person or however you want to frame it does not guarantee an easy life. In fact, it often means the opposite in a lot of history. And—and I knew that intellectually, but not in my body or my heart, I think. And so, like, going through this with you definitely woke me up to that reality because we had had a pretty cushy life, all things considered, for sure. That leads me to just the idea that this is uniquely hard for cancer survivors. But I also think the bigger reality is that all of us are precarious, right? None of us has another day guaranteed. And you can hear that said a million times. But until something like this happens to really bring it home, it just doesn't sink in. I don't know if I've shared this story before, but you said something to me once about when we were talking about this topic and we were still like, kind of in the weeds of working through everything, and you're like, “Well, Kayla, like you or your husband could get hit by a bus tomorrow.” And I just was like… that really stopped me. Because you were right. And like, I knew you were right. You know what I mean? I think I was making some case for, like, sort of self-protection and isolation, and it's like we're all precarious. That's just the human condition. And you're like, yeah, none of us knows, like, you could get hit by a bus tomorrow and it's like, oof! Yeah, you're right.
Ella 13:13
That was a little blunt, though. I could have maybe finessed it a little.
Kayla 13:18
No, but I mean, I think that's why it got through to me. Right? Like, and also, what are siblings for if not to be a little blunt with you sometimes. We've mentioned before Kate Bowler, she has a podcast and she's an author, cancer survivor, professor at Duke. And she has a second memoir about her cancer journey called No Cure for Being Human, which gets to the heart of this idea that, you know, she's struggling with her own precarity as a cancer survivor. But really, the larger idea that we all are precarious. And so we're not doing a full episode on like a book; book club, as we have in previous seasons. But today we're going to talk a little bit about that book because she really gets to the heart of this idea. One quote that I really wanted to talk about with you, Ella, is she says, “It takes great courage to live, period. There are fears and disappointments and failures every day. And in the end, the hero dies.” That's a little bit like what you said to me about getting hit by a bus; like that really stuck with me from the book. Like “in the end the hero dies,” like realizing, oh yes, all of us are destined for that. And I don't know, how does that hit you?
Ella 14:37
I mean, I think the first thing that comes to mind as you were talking and as you read that quote is that like, I think so many of us just live our entire lives trying to, like, run away from that fact, right? And just avoid the reality that, like, we're all going to die, right? And so, I mean, I think, you know, on earlier episodes we've talked about like sitting with your mortality and acknowledging it, especially at a young age, and just how unique that is and how difficult it can be. But I think it's really important, and I think she says it takes great courage to live. Like, I don't really know that we can truly live if we're not cognizant of the fact that it's a finite thing. You know, that life is short and that the story ends, you know, and I think that's… she just says it so beautifully and eloquently. But it's a really hard truth that I think a lot of people do a lot of things to distract themselves from.
Kayla 15:45
You know, a lot of people take comfort in some sort of afterlife, whether you call it heaven or something else. And that's always been hard for me to accept because we know so little about it. Right? Like it's by nature mysterious. And I think a lot of people derive a lot of comfort that the end is not really the end. Whereas for me, I remember being like a tweenager and saying to Mom, like, “I'd rather just be done. Like when I die someday. Like, I don't know that I want to go to eternity.” Because what scared me about eternity is it's eternal, for lack of a better word, like, you can't get off the ride, you can't get off the train. And we really have no idea what's in store for us. Even if you find comfort in the afterlife, and I do, to an extent at least, um, the thought of reuniting with loved ones who have died is comforting to me. But I think it's fair to still mourn the end of this life, right? I think sometimes in Christian circles we tend to be like, “Oh, well, their suffering’s done, they're in a better place, blah, blah blah.” And it's like, you know what? No. In the end, the hero died. Like, everyone's life ends with death, and it's hard and sad. And we have to accept that. And like you were saying, in order to truly live right, we have to put our hearts on the line because everyone around us is going to die, too. And I think that was the hard thing for me. Because like, for me, I wasn't the one with a life-threatening illness. It was like, I love my sister so much and I've messed up and hurt her as you do with your siblings. And now, like, maybe her life's not guaranteed in the way I thought it was. Right? And that hurts. And so like, even like a dog. Right? Like I've seen memes where they're like, “Why do we buy these tiny animals that have a lifespan of a fraction of our own and then, like, build our entire mental health around their continued survival?” And it's like very—they're kind of making a joke. But it's true. It's like inviting any sort of love and attachment into your life is setting yourself up for heartbreak, and you just have to like realize that that's part of the deal and that's so hard.
Ella 18:02
But it's such a big part of life and such a big part of being human, too. You know, I think on the topic of precarity, I think one thing we definitely want to draw out in this conversation is naming the fact that, you know, I am in remission. I am technically cured from my disease. You know, the type of cancer that I had, you know, was treatable. And, you know, now there's no evidence of disease. So they—five years out from transplant, technically, I am cured. But one thing we just want to acknowledge and hold space for is that there's a lot of different kinds of cancer where you never really get that closure, you never really get that, you know, remission, stamp of remission and the celebration and you're all good. And you just, you know, a lot of cancers it's like you're just trying to get it to a stable point. Um, and so that there's not ongoing growth. And I think that's a really hard truth that we don't really think about enough that like, you know, there's so many people who have had cancer that it's just always going to be there. And like, it might not be rapidly growing in their body or need treatment at the moment, but like, it's just kind of lingering. And I think for those people, like, that just has to be really hard to live with that. Talk about ongoing precarity, right? It's like it's just kind of there. I mean, even Kate Bowler, the author of this book, her type of cancer, she thought was just going to be something she lived with forever. Now, I think recently she actually was declared in remission, but I just wanted to hold space for that, too, because that's a reality that many people deal with.
Kayla 19:55
Yeah, thanks for bringing that up. I think that when she wrote this book several years ago, she was in this space of: you’re a survivor, but you'll always have monitoring and we'll just kind of keep tabs on your colon cancer. And yeah. Like what does stable even mean, right? You feel the opposite of stable living with a disease like cancer in your body forever, quote unquote, feels like very shaky ground not stable ground. What they mean by stable is literally like the disease is not growing. But we also can't really shrink it anymore. So you're just stable. This can apply to all kinds of different cancers. But yeah that's a really tough… a tough space to be in. And she has this quote that says, “I found moments of enoughness without the promise of more.” And I think if I remember the context, she was kind of talking about just being in the moment with her young son, or even in the moment at work or in nature. Because our culture teaches us to have a five-year plan and have goals and save for retirement. And everything's about more and more and more and future. And she talks about mourning the fact that her son won't really have siblings, at least not biologically. In her mind, right, they bought a house. They had their first kid. They were going to have a second kid and put it in the other bedroom. And yeah, she had to, like, really learn to live into these moments of enoughness without the guarantee or promise of anything else; like this right now has to be enough for life to matter. And that's harder to do than to say for sure.
Ella 21:44
That's really beautiful though. I like how she says that. And I think another piece of this too, is that, you know, with certain diagnoses, you're given a prognosis. And doctors say, you know, “This is about how long we think you're going to live.” And I think that just adds another layer to this, too, right, for people who are given a prognosis. I mean, I just think that really adds to the precarity. It's like you were talking about how future-oriented our culture is, and it's like, okay, well, doctors are saying I'm going to live for this many more years. What does that mean for my life? Right? And I mean, there's just… Yeah, there's a lot there, I think, to unpack too, but I think that just adds a completely different layer too.
Kayla 22:32
Yes. It reminds me of when I worked in a pediatric pulmonary clinic and worked with a lot of cystic fibrosis patients. That disease is something you're born with. It's genetic and takes a huge toll on your entire body, but particularly your lungs. And, you know, a few decades ago, these kids really didn't even reach their 20s. Um, nowadays, thanks to, you know, new developments and research, they're in their 40s and projections are saying they may be able to have full lifespans, um, in the coming decades. But yeah, when you said like prognosis, that's what reminded me. It's like, how do you make plans or don't make plans around this idea that is just a human best guess, right? And it's hard because I do think there are ethical questions at play. Right? Like if you have something like CF or cancer that doesn't go away, you're like, okay, do I find a life partner? Do I have kids? Do I pick a career for, you know, XYZ goal. Like it's really hard, especially when you start involving other people and other people depending on you when you're like, well, the doctor said I only have X years, but then you never know. And like for these CF kids it's like, yeah, well now they have way more years than what they were maybe told when they were born. And it just… it's so heavy, I think, to plan your life around a prognosis like that. Um, because I would hate for somebody to live a shell of a life because they don’t want to hurt other people. You know what I mean? And yet, obviously, if you were trying to find a life partner or something, you would want to be really upfront with them from the beginning about your prognosis. I think having kids is a tricky one because, right, they can't come into this relationship…
Ella 24:39
With consent.
Kayla 24:41
With consent like a life partner could. And yet, who am I to say, like, “Well, then you just shouldn't.” Like that's not what I'm saying. It's just really tricky to, like, live in that space of not knowing. I wanted to share this really short little essay I wrote called “Tattoos.” Ella and I've talked about getting tattoos for years and we really should do that one of these days. Um, you know, we've never made work of it. And then, like, one or the other of us will have some reason we can't for a while. And like, right now, I'm pregnant. And so it's like, okay, well, now I can't again. But I wrote this a few years ago when we were first talking about tattoos. So here is the essay.
“I told her I wanted to get tattoos together in her beautiful handwriting of the Bible verse we both love the most. We have bracelets with this already, but I wanted something more intimate, more permanent. She loved the idea. We're going to do it.
What I didn't tell her was that a small voice in me whispered: “That way, when she's Gone, you'll always have her right close by.” I find myself in the unbelievable position of thinking that ink on my skin will last longer than my only sister. That she could disappear from my life with less warning than the time it takes to schedule a laser tattoo removal.
Will I always feel this precarity? Will I grow old grasping at her permanence, collecting tattoos of her handwriting as we decline, her letters getting shakier with age? Is the knowledge of life’s fragility a blessing or a curse?”
So, like I said, it’s short. That's the end of it. But yeah, that question at the end, is it a blessing or a curse? I think it's both. I don't know that I feel strongly one way or the other. We've talked about the concept of like, I'm not glad cancer happened, but I'm glad for some of the lessons we've learned. But I also don't want to project this idea that, like, I just treasure every single moment of every single day. And my sister never annoys me, and no one in my life annoys me because I treasure life; like you just can't live in that space either. I mean, I don't. I don't know about you. You go back to being annoyed at, you know, random stuff at the grocery store and on the highway, um, quicker than you would think you could. I think you've heard that essay before, yeah?
Ella 27:05
Yeah. And I think that last line, you know, is so striking and so true to what we've been talking about this whole episode, right? That once you learn of life's fragility, it's like, what do we do with that? You know, because I think you're right. I think it's a blessing and a curse. So I guess it's maybe just figuring out what our relationship to the fragility of life is going forward.
Kayla 27:31
Well, there's not really a way to tie up this topic with a bow, which I guess is the point of the topic. We always say our goal is to empathize and educate. And so from an education perspective, I think I just wanted people to know and to hear from this episode that you're never really over it in a way that you're never really over the death of someone you love. Your grief will take new forms and hopefully feel less, uh, life-limiting as time goes on, but it doesn't really leave you. Cancer survivors always have to carry this knowledge in their body and their hearts of the precarity of life in a way that a lot of us are able to ignore or suppress. It's like families that have gone through cancer don't have that privilege anymore. And I'm sure this applies to other diseases, like we've mentioned CF, and there's a bunch of other ones too. So I think this also circles back to some of that aversion we have to battle language like “we won, we beat it.” And that—it's like that never felt true to me after your relapse because it's like, I would never want to characterize your relapse as like a failure or a loss on your part. And again, if that language works for you, like, you go girl, like, that's fine. Uh, but I just really want people to understand this conundrum. And I appreciate when people are like, “Oh, how is your sister?” You know, like, because usually that's not top of mind anymore, thankfully, because it's been like over five years. But it is hard to know how to answer that question sometimes, especially because, as we talked about a couple episodes ago, there's lifelong side effects from treatment and yada yada. And it's just like, you know what? She's doing well right now, and I appreciate you asking, but there's like so much behind that answer. And our whole family will, like, carry this precarity forever. Next week, we're going to really lighten it up and talk about survivor's guilt. Specifically, we're going to touch on survivor's guilt three ways. So that means the survivor's guilt that a patient might feel when they lose, you know, friends that they've met through their cancer journey who have died. The survivor's guilt that loved ones might feel if they lose their own loved one to cancer. And third, the survivor's guilt that loved ones like myself as a sibling can feel even if their person is still alive. Maybe guilt around the fact that you didn't have to go through it, or that your sibling is still carrying that with them forever. And so that's where we're going next week and sort of how to navigate carrying that, because it's not really something you can totally get rid of. Just like we were talking about the sense of precarity. And um, as always, we appreciate you hanging with us for these weighty topics. And we really have grown to love this community. And so we thank you for being here. Have a good week.