Episode 40: Welcome to Survivorship
It’s (kind of) spring, and here at My Sister’s Cancer we are ready to talk about survivorship. On today’s episode we relate Michigan springs - unpredictable, stop and start, beautiful and cold - to the experience of emerging into cancer survivorship and lay the groundwork for all there is to talk about in this upcoming season.
SHOW NOTES
Sources and Further Reading:
You can reach out to us here with questions, feedback, or to share your story
Poem “Spring”
Courtney Martin’s Substack “The Examined Family”
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. This is your co-host, Ella Beckett, here as always with my sister, Kayla Crum. We're so glad that you have found your way to us. Whether you are a long-time listener or this is the first episode that you're listening to, we're just really glad that you're here and, um, that you're giving us some of your time and attention. We in Michigan currently find ourselves sort of in the start of a new season. We always say that we enter spring with some trepidation because as we'll kind of reflect on today, it is not a transition that is seamless, and it does not go straight from cold and snow to sunshine and warmth here in the Mitten State. And really, this picture of spring, and just the way that you really have to ease in, is a really powerful metaphor for survivorship and the ways in which, at least from my experience, we wanted to kind of barrel ahead into the sunshine and rainbows of spring. But the harsh reality is that winter often lingers in one way or another. So we are transitioning into this season of survivorship here on the podcast. And so we thought that a fitting way to start this season out would be for Kayla to read one of the poems that she wrote titled “Spring.”
Kayla 2:18
So here's the poem “Spring.”
After - it's almost like
waking
from a dream.
You're told the cancer's
gone
(but you've been told that before)
and you slowly, slowly
inch back to normal life.
Here and there
in dirty snow piles
along the road
is the detritus
of another winter
gone by.
A milk jug
here,
a glove
There.
Who are we
now?
Were those
our things?
Will it ever
truly
warm up again?
Right now there is
trash
in the grass.
But wait -
what's that smell?
Do I smell -
Spring?
The sodden earth
will soak up the snow, giving
life to the roots
of flowers,
of trees.
They'll peep up at first,
hesitant,
then stronger.
Stronger.
Like us.
Like the butterflies
nestled in cocoons,
waiting for the right moment
to emerge.
Once I read
an awful short story
and learned
if you help a butterfly
out
of it’s cocoon
you kill it.
It gains the strength
it needs to fly
with the very act
of breaking out
of the cocoon itself.
I feel like that
struggling butterfly.
Can somebody
give me a hand,
Please?
But apparently
this is my road
to walk.
It’s still cold right now;
the air is sharp.
But there's that hint
of the promise
of spring.
It is enough.
So I wrote that around this time of year, several years ago. I used to have to walk from my work to my car several blocks, and it was downtown in a city. And yet the walk took me past a little wooded area. So it was just a strange mixture of like dirty urban snow from the snowplows and then nature starting to pop up in this little hillside area. And a lot of my poetry from that time came from those walks. It was like the ten minutes each day where I was completely disconnected from technology and, you know, just was letting thoughts swirl around in my head. So, yeah, I remember literally seeing how you do in Michigan in the spring, like things that got lost, like a glove or a Cheetos bag or whatever, um, appearing in these snow piles that are slowly disappearing. And yeah, just thinking about how it was a very apt metaphor for this survivor experience. Um, obviously I can't speak to being a survivor myself. But like I said, and like we've mentioned on the podcast before, especially the first time, we thought that once we crossed this so-called finish line, we could just jump back to whatever we had been doing before and whoever we were before. And it was so much more stop and start and touch and go and a slow melting and reawakening and basically a Michigan spring, as opposed to turning a page or anything like that. So Ella, as we enter the survivorship season, I first just want to acknowledge this is tricky because if some of you listening are caregivers, siblings, parents, whoever, and have lost someone to cancer, obviously this season is going to be difficult to engage with, especially if your loss is recent. I do want to say that we're going to try to hold space for multiple experiences. So Ella is still with us, but I would hope that some of what we talk about, and some of even my experience not being the cancer patient myself, would relate to people who were loved ones of someone who has died and how they're almost in their own survivorship season now having lost that person with cancer. But I also want to totally give permission or hold space or whatever you want to call it for, like, if this just isn't the right time for you to engage with this content, I totally respect that. And maybe there's not a time that you're going to feel ready for this, and that's okay. But I do think it's an important season of the cancer journey to highlight, because it's much more nuanced and gray and windy than it's made out to be. I think especially like in commercials and like fundraisers and all these things, it's like, uh, “#kicked cancer’s butt,” you know, or like “Warrior Strong,” all this, that type of battle language that we've talked about before. And it's a - it's a win-lose type of dichotomy. And that's just not our experience at all with cancer. So Ella, I guess I wanted to ask you how your survivor experience differed between your first remission and your second, and maybe like how it's evolved now that you're like six-plus years out from your transplant.
Ella 7:35
I mean, first, I just appreciate you holding space for the harsh reality that not every person who is diagnosed with cancer gets to be or is a survivor. Like that's just a really hard truth, but I think it's important to kind of just lead with that and sit with that and grapple with that reality for a little while, too, because of course, that is also a part of my experience. As I've mentioned, is that - I've seen that firsthand, where some people that I've, you know, had the joy of getting to know did not survive their experience with cancer. And I think that's just a really hard thing to wrestle with as you kind of emerge into that survivorship season. And you know that not everyone's there. So I really appreciate you starting with that. In terms of my own survivorship, I think what you were saying earlier is really true. And again I know we've said this multiple times, but it's worth saying again, is that I think my first experience with cancer was very much like: ring the bell, bust through the sign, like I'm ready to get back to life. You know, it was very much like, this is the finish line. Like, I'm done with treatment. I'm just going to get back to life and do all the things I wanted to do. And a huge part of that was getting back to college. And again, I think back on that and how quickly I went to school, and I honestly don't know how I did that. I mean. For those who might not know, about a month after being declared in official remission, I moved into college and went to college with a pretty much full course load of classes. Now I wasn't like working right away. Um, I didn't have a lot of like, outside activities, but even just, I think now and reflect more on the fact that I just, like, dove headfirst back into college. And I'm like, I don't really know how I did that. So I think the first time around, survivorship was very much like trying to put cancer in a box and like shove it to the side and move on with whatever the heck I thought my life was going to look like. Which disclaimer, that doesn't really work. [laughter]
Kayla 10:09
Pro tip! [laughter]
Ella 10:10
That's not, unfortunately, that's not an option that's available to you even if you want it to be. So then I think with that being said, obviously with the relapse and going through everything again in a harsher way with the stem cell transplant and just a more long and drawn out experience the second time around, I think survivorship meant something entirely different to me. And I also think in many ways I was much more just grateful to be alive on the other side of it the second time around, if that makes sense. Like, I think I also understood better that I couldn't just move on and try to jump back into life because again, it's just impossible to do that. So I think I was much more focused on just like the next day instead of my five year plan. And here's all the things I still want to do. Like, I think survivorship was a waking up and just being grateful that I made it another day the second time around.
Kayla 11:18
Hmm. Do you think of yourself as a survivor? Like is that a term you feel comfortable with or spend much time thinking about? You know, like you go to these icebreakers and they're like, tell us about yourself. And like is one of the things that comes to mind for you, “cancer survivor” or do you not really identify with that so much?
Ella 11:42
That is such a good question. I definitely… I think that the word survivor in some ways goes along with like the battle narrative that we don't always love. Right? Like to survive something implies that you fought something or that you endured something, which is true, right? Like, yes, you do survive cancer, but… I don't know. That term is kind of loaded in some ways. Like I think there's a sort of a negative connotation in some ways too. Like in some ways it's a reminder that like cancer happened to me. Right? And it's something that I didn't really have control over, but that I just survived. I don't know, I mean when you say like, you know, does it come to mind for an icebreaker, like of course it's a huge part of my identity and my life and my personality. But I think the further out from it I get, too, and I think we've touched on this before, but it's like there's so many people in my day to day life now that don't even necessarily know that part of my story, which in some ways is really refreshing, but in other ways it's like, no, this is a huge part of who I am. Like, it's weird when people don't know you're a cancer survivor. And then it's like, how and when do you bring that up? You know? It's not just a casual “by the way.”
Kayla 13:16
Yeah. It's like walking the line of not wanting to be defined by it, but still wanting to acknowledge, just like part of who you are.
Ella 13:25
Exactly.
Kayla 13:26
I think I feel that by proxy a little bit. It's not the same at all for me, obviously, but I remember, yeah, like transitioning to a different church or job and then realize, you're like, oh, literally nobody here knows that, like, my twenties were consumed by my sister's cancer and then me having to unravel, like, all my feelings about that. I received this email from Substack by Courtney Martin. She writes a Substack called “The Examined Family,” which I can link to in the show notes. And she recently shared a little bit about her dad's dementia. But she had this quote that I pulled out because it really resonated with me. And I think it speaks to what we're trying to identify here. So I'll just read it for you a minute. She says, “It's hard to hide grief. Somehow it's not as shy as I'd like. Someone says something idiotic about a disease that has come to define my family and I can't put two words together, much less tell a well-made anecdote. Suddenly I'm outed as a human.” And that just - particularly the line that says a disease that has come to define my family, like, really struck me. Because, yeah, I just feel like we've all been marked by this experience and like that that carries with you like a tattoo or something. And yet, like, no one else can see it unless you tell them about it. So it's a blessing, right? Or whatever you want to characterize it as. We're lucky, we're fortunate. We're blessed that we're so far past cancer now that we're encountering people who have no idea what our family went through. Right. But that's not always the easiest situation to find yourself in either. And I'm trying to navigate right now, like, how much of myself do I want to be defined by that season, right? Like it was really a turning point for me personally and like my faith and even my career. And I'll never know what would have happened with my faith and my career had you not had cancer. Right? Like we don't get to know the - the alternative, but yeah. Does that mean I need to, like, cling to bitterness or bringing it up to every new person like that? I mean, probably not. I don't know, do you wrestle with some of that too? Like, how much do I need to stay connected, grateful? And how much do I need to just move on?
Ella 16:02
Absolutely. Yeah. I think that's something that maybe we'll always kind of be wrestling with and - and trying to maybe find like, a new place for the cancer part of our story, you know, like, maybe it doesn't quite take up as much room in our brain, in our heart, in our daily lives. But it's like, obviously it's always going to be there. Um, and yeah, maybe, how do we want it to inhabit our lives? Like how do we want it to continue to shape who we are?
Kayla 16:39
Mhm. Yeah. And I think that's part of why we were compelled to make this podcast, is because some part of us wasn't done, like, processing it or integrating it into where we are now. So it's as much been like, almost therapeutic for us as it has been education and empathy-building for others. It's kind of just like a dual purpose podcast vision. And that leads me to explain a little bit about where we're going. So if you've been with us since the beginning, you know that we have been following a seasonal arc. So summer was diagnosis season. Autumn or fall was treatment season. Winter was isolation season. And now spring is survivorship season. That metaphor actually was literal for Ella's experience with cancer. She moved through those checkpoints of cancer during those literal seasons over the course of her two experiences with cancer. But it also feels like a great metaphor, especially if you look at like, the dying of nature during autumn can kind of feel like how parts of you are dying during treatment, and then isolation, winter. That one's pretty obvious, like hibernation, cold, solitude, and then spring and survivorship. So we're kind of coming to the end of the road here. And we plan to make new weekly episodes through May, like up until the end of May, and then we're gonna take a pause. So if you're a regular listener, you know that Ella is in grad school right now and I am pregnant, so it actually lines up pretty well that we're going to take a hiatus from this work starting in June, and I don't think we're prepared to say we'll never come back. But for the foreseeable future, we're going to let this one year seasonal path of My Sister's Cancer sort of live as a - like a limited series, so to speak. And the website will still be there with all the show notes and the podcast will still be, you know, on your podcast app wherever you listen. There just won't be new episodes for the foreseeable future. And perhaps, you know, it will just be a one year and done thing. We don't want to rule out any future ideas we might have, but we just wanted to be upfront now about where we're kind of headed so you're not taken by surprise when we're like, okay, it's our last episode. But that being said, it's only March right now, so you've got about three months left of weekly content from us, and we're going to cover topics like long-lasting side effects. You know, people always think about side effects during treatment, but there's long-term physical effects from treatment, lasting family dynamics and mental health issues. Lingering effects on relationships and like marriage and parents. Survivor's guilt. Survivors’ resources. So we have lots of content left in these last three months to share with you, but it is sort of the beginning of the end for this current iteration of My Sister's Cancer. So thanks for listening to the first episode of the survivorship season with us. We wanted to really map out our approach to survivorship, that it's not all rainbows and butterflies, and yet there's moments of sunshine and there's moments of rain. And we're going to explore those in these next three months with you. So next week join us for a fourth anniversary COVID episode. At least here in Michigan, COVID sort of hit in the second week of March 2020. So we're going to unpack that anniversary and then talk a little bit about anniversaries in general during the survivorship period of cancer. So that's where we are going next week. And until then we hope that some sunshine is finding its way to you.