Episode 44: Forever Overshadowed?
Even when you’ve been a survivor for years, cancer can still affect your daily life. We’ve talked about lasting physical side effects; today, we tackle lasting mental and relational changes that sprung from our cancer experience.
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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 your co-host, Kayla Crum, here as always with my sister Ella Beckett. If you've been with us lately, you know that we're in the survivorship season using the apt metaphor of springtime to discuss cancer survivorship, both of the patients themselves and of their loved ones. As we have said from the beginning of this season, spring—at least here in Michigan—is not super reliable and full of sunshine. It comes with snow and rain and a little bit of sunshine, and eventually we make it to summer. Um, so we're kind of covering that roller coaster here as we discuss survivorship as well. Last week we discussed infertility as it relates to cancer survivorship. So that was a bit of a heavier episode and we appreciate your time and attention for that. And this week we're going to cover something that's maybe a little bit more nuanced but still a difficult part of survivorship: the topic of life milestones and whether or not they remain overshadowed by cancer. And that can apply to the survivor themselves or their family members. I think everyone's experience is probably different, if they really incorporate cancer as part of their identity or if they want to sort of move on and leave it in the past. So we'll be exploring that concept today.
Ella 2:18
So on one of our episodes a few weeks ago, we were talking about my birthday and about how, whether we like it or not, you know, cancer is a part of my story, and it will always kind of have an impact on my birthday, and that it really just elevates the emotions surrounding that milestone for me in my life, both positive and negative. And I guess Kayla, I would love if we could start just kind of with you and if you would be willing to share maybe how my cancer has overshadowed or had an impact on different milestones in your life.
Kayla 3:04
Part of the reason I created the My Sister’s Cancer website, before I ever even conceived of this podcast, was to create a space for siblings of cancer patients, specifically young adult siblings, to feel like their experience was valid and difficult because it's so hard not to compare. Right? Like I'm about to share that yes, I feel like your cancer has influenced—overshadowed might be a strong word, but definitely impacts, like, my ongoing life milestones. And yet it's so hard because immediately I want to be like, “But she had cancer” and like you said, you shouldn't complain, you know? But that's the whole point of My Sister’s Cancer is to, like, create a space to hold the experiences of family members as well, particularly siblings. I think it's just like one of those instances, like we say a lot, that two things can be true. It's like it's not going to be an apples to apples comparison. I can't imagine, like, what you went through and how it continues to affect your life, but also like you don't really know what it's like to go through it with a sister either, you know? Which is weird. So I think the biggest one that comes to mind… it's funny, this feels like the biggest one and yet it didn't bother me as much as I would have anticipated, is my wedding. And so you got diagnosed the first time, I think about two weeks after I got engaged. So basically my whole wedding planning era revolved around your treatment. I remember, like, planning bridesmaid dress shopping around like when you would feel best between chemo cycles and considering even, like, the type of dress to like, cover your port scar and things like that. And then, you know, we were, I hate to use the word lucky, but you were in remission for about eight months, and it was during that time that I got married. And so, like, your hair had come back and was cute and curly and you were quote unquote healthy for the wedding. So I think that was a blessing because you would have hated, I think, first of all, just feeling sick for my wedding would have been a bummer for you. And also, I just—knowing you, like, you don't love to be the center of attention or like, detract from things. So. You know, trying to accommodate what you would have needed and all of that would have just added a whole layer to the wedding. The actual wedding wasn't directly impacted by cancer, but the planning of it was. And I, I do think, you know, in a way it made it extra special to have you up there with me as my maid of honor, because it's like you just had a life threatening illness that you are recovered from. Like how special that I can have my sister with me on my wedding day. Like it makes you think about that stuff. But at the same time, it was an interesting season to be a senior in college, planning a wedding slash your only sibling. And like, as we discussed ad nauseam, navigating like how to manage normal life with supporting you, keeping everyone updated and all of that. So that's a big one that comes to mind for me. The other biggie that comes to mind and is relevant right now is my pregnancy. So some of the listeners might know that I'm currently pregnant with my first child. And we discussed last week on the podcast that fertility is affected by cancer treatment. And your path to having children, you know, is probably not going to be typical. You know, who knows what the future holds. But. Yeah. As I was, like, trying to get pregnant and then once I was pregnant, debating how to tell you and how to tell our parents, it's like hard to navigate, how to be respectful and kind and yet, like, wanting to be overjoyed at the same time. Right? And it's like, how do you hold a gift like a pregnancy alongside of, like, the uncertainty of someone else's situation? And you've been great about it. But yeah, I think it's been a little trickier than it would have been without. Like, I think it just weighs on all of us in the way that we talked about on the birthday episode. Like it adds this like weight or bittersweetness to all the joyful things that you would originally picture just straight up being happy about. So those are the two big things that first come to mind for me. Was my wedding for you, Ella, like… did cancer sort of overshadow that for you? You were in remission. But I'm curious how that felt for you at the time.
Ella 8:22
I definitely think that cancer had a huge impact on your wedding for me. I think it's important, though, that you said, like, not necessarily the wedding day itself, but like the whole lead-up and experience to it. And I think what you were just saying really struck a chord with me, how you were saying, like, an experience that's supposed to be like total, complete joy and excitement is kind of dampened in some ways, you know, by cancer. And it's like, I have very similar memories of the dress shopping and all the little experiences that kind of lead up to your big day. Obviously I was not feeling super well, so I don't think that I was able to enjoy that experience and be like, fully present in ways that I would have wanted to be for you kind of leading up to the wedding. But I am also super grateful that the wedding itself, we were in blissful ignorance of what was still to come with the relapse. And honestly, that's a shout out to my doctor. The way we timed my scans, she said, “How about you just enjoy the wedding and we'll do the scans after the wedding?” And I'm really grateful for that, because I do think the actual day was just pure joy. And I don't have any memories of, like, not feeling well or not being able to enjoy the day. So I'm really glad for that. And yeah, I think, you know, you have been so gracious and kind with everything with your pregnancy and just so sensitive to me and my experience. And I'm really grateful for that, too. But I think, again, like you were saying, it's, you know, I, I want to just be fully joyful for you and your experience and not let cancer or, you know, a potential different path for me take away from your joy, if that makes sense. So I think the underlying theme that we're kind of getting at here in a lot of what we're saying is that at the end of the day, yes, cancer can and does overshadow different things in our life or impact them in a variety of ways. But I think one point that I want to make sure to make is that, you know, we do have a choice in how much we let cancer affect those things, right? Like at the end of the day, we do have autonomy and somewhat of control over how much we let those life milestones be overshadowed, if that makes sense.
Kayla 11:14
Yeah, I like that concept. I think it's hard sometimes to pick apart what of it is autonomous and what of it isn't, you know, and that probably requires some therapy to like, sort out for each person. I think that I've transferred some of my anxiety that I took on when you were sick to my pregnancy, and my pregnancy is healthy, and there's been no reason to have any concerns other than like, of course, everyone worries a little bit. But I've been talking with my therapist about like… I think that that veil that we have separating us from like, “people out there” was ripped away from me when you got sick. It's like, bad things happen to other people, you know? And I know for some people that happens to them in childhood. So, like, you know, we were lucky in a sense, to get almost 20 years of feeling like bad things happen to other people. Not that we would have really said we believe that. But like, it's just sort of this posture, I think, when something tragic hasn't happened to you. So now that I'm pregnant and I know, oh, your family can be in the 2%, you know, we've talked about our distaste for statistics because somebody is always that 1%. Like, if it's you, it's 100% of your life. So it's like, I don't really care that it only happens 1% of the time because somebody is that 1%. And then I've had to really fight against that mindset with pregnancy, you know, worrying that like my baby or whatever could be in the 1 or 2% of X, Y or Z issue. I was talking with our grandma the other day and she said something about how when she had babies, like, they didn't have the internet, you know, and like 3,000 books about pregnancy out there. And so in a way, I mean, yes, it's nice to be empowered and equipped with knowledge, but at the same time, they didn't worry about every A to Z problem that might occur. They just like had babies. And that's just how it was for millennia, you know? And that really, I've been thinking about that a lot. Like I've been trying to educate myself so much with this pregnancy, but it's also like, yeah, knowledge is a burden, too, you know, knowing what could go wrong. Have you transferred… do you feel like any of your, I don't know, whatever you picked up from your cancer season as far as coping or like cynicism to other things in your life?
Ella 13:59
I don't think as directly as your example with the anxiety, but I definitely find when I'm in more stressful seasons of my life or times when I'm not, like, mentally healthy or stable, I guess you could say, I definitely see some of my coping mechanisms that I used come out. You know, I think one that we've kind of touched on is I'm kind of a withdrawer. Like that's something that really served me, I think, when I was sick in some ways. But I definitely see that kind of rear its ugly head when I'm, uh, in a stressful situation. Sometimes I just put my hands up and kind of back up and just shut down a little bit. I don't know if that's like a direct translation, but I guess in many ways, yeah.
Kayla 14:54
Mhm. It's funny hearing you say that. I feel like I do the opposite, like I'm gonna—what's the phrase?—like beat the dead horse. Like then I will, I like won't let go of something. It reminds me of our childhood fights where like you would be like over something and I would just like want to rehash it and rehash it and be like, no, like we're getting to the bottom of this. Like, I need to, like, wring this conflict out like a washcloth. And you would just be like, it's over. Like, let's move on!
Ella 15:29
We apologized. It's fine! [laughter from both] It’s so true.
Kayla 15:30
It's funny how some of these things follow you like your whole life in different ways.
Ella 15:37
So speaking of things following us in life in different ways, I guess I'd be curious how from your perspective especially, you feel like my cancer impacted how our parents treat both of us. And I want to tread lightly here. You know, we have the utmost respect and love for our parents, and I don't want this part of the episode to be in any way like a negative perspective on them or their parenting style. I just think we should certainly hold space for the ways that cancer impacts how you parent children differently in some ways, and I guess from a sibling perspective, I'd be super curious to hear your thoughts.
Kayla 16:29
Yeah. Thanks for bringing that up. Like you said, it's a tricky thing to discuss publicly, but even privately, right? Like you never want to hurt anyone's feelings. Hi, Mom. I know you're listening. And Dad. Mom's, like, our first listener every week, which is great. She's been so supportive of this podcast, and my dad too, even got an Instagram to follow along with us. So. But yeah, it's—it's something I've had to work through. There's not something I can point at and say, my mom and dad treat my sister, you know, X or like do X for my sister because she was sick and now she's the favorite. Like, I don't feel like you're the favorite per se. I think we've touched on this in a past episode, but your cancer experience, which was kind of like a brush with death, right? Like that's really what we were all grappling with was the possibility of losing you. I think has added like an extra layer of…I want to say tenderness. That doesn't mean they're not tender towards me. They've just never had to confront my imminent death in the way that they had to for you. And so I just think you might always be… And this probably affects you, too. Not always in a positive way, but you might always be more needy in their minds, or like…
Ella 17:58
Fragile?
Kayla 17:59
Fragile. Yeah, yeah. And it's interesting to think about birth order because part of me wonders like, if it was reversed when the experience came… right? Because in general, right, we all talk culturally about youngests already kind of getting babied in the family, and it wasn't a huge dynamic of that, I would say, in our family from before, partly because there's only two of us. So it's not like we have the classic oldest, middle, youngest that you see in the United States. Um, we just have the two of us. And Mom and Dad were always very good about making things fair and 50/50 and blah blah, because there was only two of us. But yeah, it's again, like, it's not anything that I can tangibly explain. And I've wrestled even with the idea of like, how much of this is my own issues and in my own head versus like how much of it is actually true? Does that make sense?
Ella 19:03
Yeah.
Kayla 19:04
Do you feel like they approach you differently? It's so hard because you were like becoming an adult. So it's like you don't know how it would have been otherwise. I guess neither of us know.
Ella 19:14
Yeah. And I think it's especially amplified because, as we've said before, I was at such a crossroad time in my life, like, right, I was moving out on my own, but then I wasn't, and then I moved out again, and then I moved back. Like there was so much whiplash in that that I think, for them too. I don't think they really knew how to treat me because they had to quite literally care for me and meet my every need for several months, you know? And then when I just wanted to, like, jump back in and move to college, it's like, whoa, wait. Like you were just really, really sick and we had to take care of you for everything. So I just think there was so much back and forth that rightfully so, I don't think they always knew how to treat me. And that makes sense to me because I didn't even know, right, like where my role was or what was going on. So I think it's very tricky for sure. But I mean, I think at the end of the day, like, yes, I don't always necessarily love, like, the over-concern and care in general, but I know it's just because people love me and, you know, want me to be okay. I think I struggled with that, you know, when I was making that transition from living at home for a while and then having to go back out into the world, I kind of wanted some more, like, separation and freedom, and I think I was able to express that. And I'm really grateful that we have such an open relationship with our parents that we're able to talk a lot of those things through. But, you know, I think it's different now because we're so many years down the road. But I definitely still think there's just a little bit of a difference, and I think that kind of comes with an added layer of—I don't even know if the word is guilt for me, but like, I know that that's true and I, I feel for you, you know, because I'm like, oh, I want us to get the same amount of, you know, love and care. And of course, again, they love us so well. But I think, I do think it kind of creates a little added layer of like, yeah, I just I feel weird about it, you know.
Kayla 21:39
Mhm. Yeah. They love us differently but equally, you know, I guess is what I would say. Although you can't really quantify love so that's hard to even like say. I think this is just an amplified version of all siblings, probably even healthy ones, right? Like yeah, your parents can't give you and love you exactly the same way as your siblings because you're different people and like their personhood is going to bump up against your personhood in a different way. And yeah, I would even say in childhood, if anything, the tables were maybe a little bit turned; like I was the compliant one. And like the more quiet, sensitive, people-pleaser, good girl, sensitive soul. Uh, believe it or not, listeners, Ella was a bit feisty as a child. Spicy? Spicy. I've heard that now. Spicy ones. And yeah, she gave them a run for her money. And like, elementary school, just, she had a lot of pizazz right from the beginning. And so again like, I wouldn't say they like didn't love you as much, but I think that their relationship with you was more difficult than it was with me for a while. So I try to remember stuff like that too, like it's just—it's seasonal and it's also like, different doesn't mean worse or better or like not enough. And I think part of that is my, right, like, you were talking earlier about our choice. Like I have to choose to, like, see that in my adult way now and be like, this is just a result of what happened and not anything about me really at all. And it's just… and probably—I'm curious if any listeners have experience with this—if we had another sibling, I'm curious if like, I would be—would feel or act toward you differently than the other sibling. Probably. Right? Like if one sibling of three or four or more went through something hard, I would imagine that would shake up those dynamics too. You might be harder on healthy siblings, like, among yourselves. I also think that I was reminded while you were talking of our guest, Jack, who shared a few episodes ago about his son sort of getting lost in the shuffle of his wife's cancer and his daughter's mental illness. That his son was “a good kid.” He said that phrase a few times, and that's what we ended up naming the episode. And so I think part of why I wanted to talk about this is because, yeah, I, I definitely—I've always leaned into being a good kid, um, and a rule follower. And I think that when you got sick that just like, continued. Right? You just want to like, do the right things, support everybody, blah, blah, blah. And I've learned about myself that I tend to perform well under pressure, both in like work settings and personal settings, even though on the inside I'm not having the best time. So like part of it is me. Like, I've had to learn that you've been in survivorship for several years. Like… to be—I've had to learn to be a little more open and vulnerable, like with our parents or with other people, to get the support that I need. Um, because, like, you can't just—people can't read your mind. Right? Like, it's sort of something a lot of people probably identify in therapy, but it's like our guest Jack was saying, like, you know, he wishes his son had come to them sooner with his struggles. He's glad he did in college eventually, but he also gets why he didn’t, and I feel like I resonated with that experience. Like, yes, there's a difference in the posture Mom and Dad have towards you now, and I think in the early days, several years ago, maybe it bothered me, whereas now I've sort of more just integrated that like, we've all changed how we are towards one another because of what happened. And it's my responsibility to ask for what I need or like express how I feel, rather than expect any of you to read my mind.
Ella 26:05
That’s good. I really… I really appreciate you making that point. And I also want to pull out, you know, what you were just saying made me think that, like, obviously this impacted Mom and Dad deeply too, right? Like, their life milestones are forever changed too. And I think, yeah, I think it's easy for us as children, I guess I can't speak for you, but for me as a child of parents to, to kind of just focus on how things impact me and then maybe like what I'm not getting from my parents or what I still need from, you know what I mean? But it's like at the end of the day, like they're humans too. And obviously this deeply impacted their lives too. And they have needs and wants and all the things. So I think just acknowledging that, like, parents who are listening, you know… You know, we just have to believe that you're doing what you can and you're, you know, trying to show up for your kids in whatever way possible. And we want to acknowledge that and hold space for the way that cancer impacts you, too.
Kayla 27:12
That's so true. Now that I'm about to have my first child, it's really hitting me that like, parents are just humans, right? Like, you know that on some level. But you're like, oh, they were just people who had a baby and then, like, figured it out, just like I'm trying to do right now. And so really trying to bust through that idea, like you said, that like it's only a one-way relationship or like they have some sort of superhuman ability. It's like they don’t, and I'm sure it affected their midlife in ways we don't understand and never will. You know, also their probably even like logistics, finances, other relationships in their life. Like they had to really focus on you and yeah, that's probably a whole nother episode, but you're right. I'm glad you pointed that out as well.
Ella 28:08
Well, if you're still hanging with us, thanks so much for listening. We so appreciate all of you that take the time out of your day to listen to us and learn from us, and also just empathize with us. We are really grateful for all of you. Next week we're going to be talking about living with precarity in this season of survivorship, and how, you know, when cancer is over it's never really over. And it's something that is always kind of there looming and just kind of how we sort through that as we move into survivorship. So thanks so much for listening. And we hope that you have a great rest of your week.