Episode 12: Grappling with Mortality at a Young Age

Written By Kayla Crum

When you’re an adolescent or young adult cancer patient, you often feel out of place. You’re either getting chemotherapy next to toddlers, or in the radiation waiting room with the elderly. So what happens when you layer the idea of death on top of that? In today’s episode, the sisters unpack grappling with mortality at a young age. Please be gentle with yourself as you listen, and don’t hesitate to reach out to the national mental health helpline by calling 988 or accessing the resources below.

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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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Kayla 0:42

Welcome back to the My Sister's Cancer podcast. I'm one of your hosts, Kayla Crum, here as always with my sister Ella Beckett. Today we are going to be talking about mortality, especially as it relates to being young and being diagnosed with cancer. So just be gentle with yourself as you listen. If death is not something you want to think about today, for whatever reason, maybe give this a listen on a different day, we are going to be talking about death and… just the concept of dying young and all of that. So you've been warned at the very beginning. That's where we're going today. Obviously, our podcast isn't kicks and giggles on a normal day, but this is a death-related episode, so just wanted to give you a heads up. So jumping right in, I just wanted to say off the bat that I think cancer is something that almost has death in parentheses behind it in our minds. Like, when we hear the word cancer, we think, “so maybe they'll die” about someone. And that is unfortunately true when it happens to you or your family member. I think that part of the shock of a cancer diagnosis is this idea that it is fatal if untreated, or if we can't conquer it, to use that fighting language again. So I guess let's start there. Ella, did you immediately think about death when you were diagnosed or did it slowly dawn on you? What was that like?

 Ella 2:30

 Yeah, I think that's right where my brain went, honestly, even before I was diagnosed. Like, I remember when we first started putting language to the fact that it could theoretically be cancer.  And even in those moments is when I first started thinking about dying and death. And honestly, up until that point in life, I don't know that I had ever - I mean, this is going to sound weird, but I don't know that I had specifically thought of myself dying, because I just feel like in my experience, at least when you're young and you're healthy… I was in a really great headspace and I didn't really focus on the end of my life. I'm sure this is pretty typical for a lot of younger people. But to answer your question, yes, I definitely think cancer and death are just very closely linked. And when you hear the words “you have cancer,” I think, like you said, in parentheses it's like “and you may die from it.” And that was just a hard thing to grasp. I mean, especially like we've talked about at the age of 18, when you're feeling youthful and vivacious and about to start this exciting chapter of your life, it's like, wait a second, that might all stop here. Did you think that right when I was diagnosed, too?

 Kayla 4:15

 I don't know about overtly. I definitely had that cancer-death association. Like we were saying, it always kind of comes in parentheses after the word cancer, but I didn’t really think about you dying until you relapsed, I think. You know, you were diagnosed, and then it was either the next day or two days later that we met with your oncologist the first time, and she said, “This is going to be a terribly difficult four months, but you'll have your Ella at the end of it.” And like, I've never forgotten that and we clung to that that first time. I mean, she was empathetic, but she was like, this is treatable. This is kind of common as far as cancer goes in young adults. Like, you are going to have Ella. So we just kind of were able to write off death from that very first appointment. And I'm so thankful for that. It was there on the edges of my mind, but we were told this is such a curable cancer. And then I think when you relapsed, I was like, excuse me,  false promises. Like, I love your oncologist. So I'm not mad just at her for saying that, but for all the reasons we've talked about on this podcast before, the relapse was really difficult. And then when you were being transplanted, I was working with transplant patients and saw some of them die and saw second and third transplants fail… and so that season was… I thought about your death a lot, honestly. You know, you can get one infection when you are basically having no immune system because they rip your whole immune system away to give you these new stem cells. And you get one infection and you go septic, and it can all be over. And I saw that firsthand as a nurse. So yeah, the Taylor Swift song, “Soon You'll Get Better,” about her mom's experience with cancer. She has this line where she says, “I hate to make this all about me, but who am I supposed to talk to? What am I supposed to do if there's no you?” And that just hits home for me because I have the one sister, and I'm so lucky that she's, like, my best friend.  And yeah, just the idea of you not existing and then me existing with just Mom and Dad - and my husband, but that nuclear family you grew up with, it was just - it kind of blew my mind. So.  Yeah, I kind of thought about it the second time.  Did you fear death that second time?

 Ella 7:07

 That's a really good question. I think what you were saying was a great point, that once we had met with my oncologist the first time around, I definitely feel like I was at more peace of mind, that it was something that was treatable. But then when you were saying, yeah, the second time around, it's like, you're more questioning: “Well, shoot. What if this doesn't work? Then what?” Right?  I don't know that I wrestled with a lot of fear surrounding it, honestly. Like I've said before, I was really close with the Lord in those moments, especially throughout the whole transplant process, and I was just very strangely at peace with whatever was happening to me.  That I almost felt like, I mean, this is going to sound crazy too, but I was almost like, okay, whatever happens, it's going to be okay.  Obviously I didn't want to die, but I think I was coming to terms with that possibility.

 Kayla 8:23

 Wow. Yeah. That's interesting because I haven't thought about this until you just said that, but  it's different for the people who are thinking about losing someone versus the person who's thinking about  leaving. Yeah. Do you know what I mean? I'm sure it's a different experience.  Something we haven't really touched on yet in this episode is suicide and suicidal ideation.  That's not something either of us has dealt with. But I do just want to acknowledge the reality, especially in the cancer community. I think that it's unfortunately somewhat normal… I don't want to normalize suicide. But what I'm saying is that when your body is being put through so many things and your mental health has been worn down, I think a fair amount of cancer patients do experience that. And so I just want to hold space for that. We don't want to speak too much on it because, again, we have not experienced this ourselves and don't want to insert ourselves into someone else's experience. But if that's you, know that you're not alone, that that's not uncommon for cancer patients and sometimes their caregivers and family members and friends, and that there is help. So we will put some links to suicide resources in the show notes. And please just know that if anything we said today has brought up anything for you, those resources are there. And if we spoke out of turn about anything, we would love for you to email us and let us know about your experience so that we can learn from that. And our email is hello@mysisterscancer.co. So, just want to come into this conversation with complete humility and acknowledge that. It's funny, you said earlier in our conversation that you never really thought about death until you got cancer. I was that morbid kid who was, like, up at night in the fourth grade asking Mom and Dad about heaven and were we sure that it was worth it or should we just be done existing when we die? And all of these deep theological questions. That was more heaven and afterlife focused than death. But, I mean, they're tied together, so I definitely did kind of spend time as a child thinking about death. And I don't know, that probably says a lot about my personality in some good and bad ways. But I don't know, I think that being raised in the faith, the Christian faith, like, Jesus was your ticket to heaven. And so it was almost like you were taught to not fear death, because it's not really death. And yet that's maybe what culture or like, the little C church was teaching us, like, the global church. That's the messaging we sort of got. Yeah. I feel like our parents were pretty good about having a reverent spot for death in our lives. We were taken to an absurdly large number of funerals as children. I didn't realize how uncommon that was until later, when friends in high school and college were like, I've never been to a funeral. I've been to one funeral for my grandfather, and I was like, I've been to more funerals than I can count. Part of that is we have a large local family. My grandpa in particular was one of ten children, and my mom was good about taking us to every one of those funerals. He was the youngest or second to youngest of ten, and so most of them died before him. And mom took us to all those funerals. Our mom also just has a really soft spot for elderly people and has often focused her social work career on the elderly, and at church has looked out for and befriended the elderly. And so we just had a lot of relationships with elderly people. And so even though we were fortunate to have all four of our biological grandparents until teenage years, a lot of special people in our lives had passed away, and we'd gone to funerals by the time we were teenagers. So all of that to say, I feel like we had a decent exposure to death. Like we weren't living in a world where we pretended it didn't happen or where it was something we didn't talk about. So I am thankful for that acclimation or healthy exposure, I think. Now none of that would have made it okay - I can't even imagine what it would have been like if you had died. And I am conscious of that when we're making this podcast, because I know that not everyone's siblings are survivors. And so I never want to picture or imagine out loud what that would be like and then offend anyone or step on their experience. So I'm not trying to make light of it by saying, like, “Oh, well, I'm glad we were exposed to death and it was fine.” That's not what I mean. I'm just sort of like, thinking out loud about how we even culturally think about death. And  all those funerals we went to, I think only one of them was for a child. I don't even know if you were old enough to go to that one. Maybe you did. I was a child. One of our schoolmates, not in either of our classes, but a child in our school died from cancer at a young age. So I vaguely remember that funeral. And I can't even fathom being that family. That was probably my first realization that young people died. Because, like you were saying, you just don't really take that in. All those other funerals were for old people where it was sad, but it was like they lived their long life, right? Which brings us to our next point about the AYA community, adolescent/young adult, right?

 Ella 15:07

 Yeah. I think what you were just saying really speaks to the fact that we all just assume that we'll get to grow old and that we have many decades ahead of us. Like even some of the language that we all just use or the way that we plan five years in advance. It's just like we assume that all of this time is just a given. And I think it… it's coming to terms with the fact that that's not all for sure and that our lives can just end randomly even when we're young, I think just is a really difficult thing to sit with.

 Kayla 15:55

 Well, and something that we will probably talk about more when we get into more survivorship-themed episodes is that a lot of people who go through cancer don't have a very firm prognosis. Prognosis is like the term used to mean - you've heard the phrase, like, “five years to live” or “two months to live” or whatever. That's like your prognosis.  You never really got a deadline, so to speak, because it was treatable.  So your prognosis is like, this is curable. And now that you've passed the five-year post-transplant mark, it's considered a cure, which is amazing. But some people don't have it tied up with a bow. And I'm not making light of your experience at all, but some people are just… they just manage it forever. It's never totally gone. Maybe every so often it flares up and they treat it again. It's bizarre. I think that as a nurse in cancer, that was something that I didn't understand until I was in the cancer world. As a nurse, I mean, I saw like, oh, some people just live with cancer that's kind of dormant or, like, low grade, and that sounds so weird to use those words pertaining to cancer, but some people are truly never done. It's not like remission equals cure equals now I'm going to be 80. Like, it's not that simple. Some people don't really know how long they have and live with that forever, or are told one thing and then they outlast it, and then they're just kind of like, okay, I don't know what to make of this. And that does a lot to your brain. To your mental state. One thing we wanted to touch on in this episode is the strangeness of being an adolescent or young adult. AYA is what we'll call it from here on out, because you're kind of like riding the edge of cancer world.  Do you want to say more on this, Ella, like, what your experience was? I mean, I don't know if we've said this, but you were treated at a children's hospital.

 Ella 18:16

 Yeah, I think riding the edge is, like, the perfect way to describe it, because on one end of the spectrum, I did all of my chemotherapy and inpatient treatment and all of my doctor's appointments and everything, my oncologist was all at the children's hospital. So really, every time that I went there, I felt really old. I mean, to the point where sometimes they were confused if I was the patient, because when you're walking up to the front desk and there's no children with you, they're like, okay. And you're like, no, I'm the patient. I'm here for my appointment,  because I appear to be an adult. They were confused. And, I mean, that's not to say that they don't have other young adult patients. I think it's just less common. So, like, I'd be sitting in the treatment ward or treatment wing, whatever you want to call it, surrounded by a bunch of kids, right, and lots of toys and bright colors and child life specialists doing amazing things to entertain the kids and kind of distract them in many ways. And I just felt very old and at times out of place. Not necessarily… that's not to say that they didn't put forth an effort to make it a great experience for me too and the age that I was, but there were just times where I definitely felt old. But then on the other end of that spectrum, I did my radiation in “adult world,” as we'll call it, and I felt like a child because everyone that I saw that was getting ready to go for their radiation treatments were significantly older than me, like 50 plus. And again, this is a sweeping generalization. I'm sure there were many other young adults also receiving radiation, but I just have this really distinct memory of, like, you would put your things in a locker, you would change into your little hospital gown, and then you'd, like, wait in this little lobby waiting area, and the nurse would come get you and then bring you into radiation. And as I was coming out of my little changing room, I remember there was this older gentleman, probably in his 70s or so, and he just looked at me and he looked so sad and he just looked at me with so much pity. And he was like, “You're just way too young for all of this.” And that really hit me because I was like, yeah, I know, but I also was like, I don't think anyone should have to go through any of this, regardless of what age you are. But that was just a really standout moment to me.

 Kayla 21:20

 Hmm.  Yeah. And, like, it's strange because you're like, there's a whole room full of kids across the street, dude, like, younger than me. And yet to him, you were so young in that setting. And he's right. You're both right. No one should have to go through it. But, yeah, I think it's strange to be in that AYA category grappling with death. I think a lot of times older people with cancer, right, are closer to death; have maybe given it a little thought if they're in their 70s, maybe even 60s or older. You know, outside of cancer, you already are kind of thinking, like, okay, I’m in the last portion of my life, or whatever. And then kids - I don't want to speak for kids. I'm sure it depends on the child, but really little ones don't have to go there or like, I don't know. I just don't think that it's quite the same as being on the cusp of adulthood and thinking you have this whole life in front of you and then being like, maybe you don't. So, yeah, we just wanted to acknowledge the weirdness of being in that AYA group. And we mentioned on the superficiality episode, it's strange because people your age don't really grapple with mortality. I'm actually going to kind of take back what I just said about kids. Kids will often ask questions like, where do people go when they die? Or like, oh, so if this happened to you, would you die? They just aren't afraid to go there, especially if they're like age three to six. And then older people also, I find, are often more willing to talk about death. And so being in that AYA category, it's like, none of your friends are just, like, casually talking about death usually, or like grappling with mortality or philosophically musing about death. Or if they are, you can tell it's a thought exercise. It's not like they've actually had to think about doing it themselves. So in college, I remember there will be these great philosophical or theological debates late at night or whatever. It's kind of this cool intellectual thing to do, is to just think through the universe or whatever, but when you've actually had to face death or your loved one has had to face death, you're like, this isn't like a thought exercise.  This is reality.

 Ella 24:16

 Yeah, I totally agree with that. And I think I've mentioned this too on a previous episode. But  one thing that I found extremely helpful was to join an AYA support group and to get to know other people my age who had grappled with their mortality and had endured cancer treatment and could relate with me on a myriad of levels that other people could not. So I would just encourage those listening: seek that out. I would hope that a social worker at a hospital could direct you to a local AYA group of some kind. I know that many hospitals are really trying to focus their efforts on this age group, and several are starting groups of their own, but it might be through organization or something connected with the hospital. But I just can't stress the importance enough of getting plugged in with people who do get it, so that you feel supported and understood, and that you can talk about things like death and other really heavy topics that might land a little differently in other social circles. 

Kayla 25:43

Yeah. And I will say AYA is defined differently depending on where you are. I think that some groups are like 18 to 25 and some groups are like 22 to 40. Like, I've kind of seen quite a range.  They're basically trying to target that non-teenager, but, like, not middle-aged person. Twenties and thirties is often another thing I see, but some of them are more narrowly defined, so they're out there. I'm going to link in the show notes a bunch of Instagram accounts you can follow.  There's a magazine, there's another podcast. There's a lot out there for this age group, and we'll link to a bunch of resources. Gilda's Club is one thing I want to shout out in particular because that is a nationwide organization. It was founded because of Gilda Radner, who was a famous comedian and had her own cancer story. And so it's kind of in her honor. And they often do a lot of support groups, both virtual and in person. And they’ll often have, like, an AYA group available, so that is a nationwide option. But local organizations might have stuff, too. Again, like Ella said, your social worker should be able to tell you or or honestly even like cancer.org or like the American Cancer Society sometimes has directories of local groups. So we'll link up to a bunch of stuff for you to check out.  But, yeah, we just wanted to address the elephant in the room, which I think is common in cancer. People don't want to be like, is she going to die? But everyone's thinking it, you know? So, yeah, if you've been in that situation or struggled with thinking about death or whatever, you're not alone. And there are places to safely explore that.

 Ella 27:58

 So next week we're going to be completing our summer diagnosis episodes. So this will be our last episode for the summer, our last episode in the diagnosis season. And we're going to be closing it out talking about the limited options available to cancer patients and how frustrating it can be when there's really only one option for treatment and that'll be a great segue into the fall season and really going deeper into that treatment season. So hoping that you all have a great week. Again, thanks so much for hanging with us and we hope to see you again soon.

Kayla Crum
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