Episode 26: Reflecting through Writing
As the calendar turns from fall to winter, we too are turning from a focus on the treatment season of cancer to the isolation season that often follows it. As a final reflection on what cancer treatment was like, the sisters turn to the written word - both their own and that of other authors - for inspiration and closure.
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Kayla’s Poems
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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.
—-------------------
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. Before we get started today, we just wanted to ask you to take the time to rate and review the show. We've had a somewhat steady, slight increase in listeners since we were featured on NPR about a month ago. And the more listeners that rate and review the podcast, the more people we can continue to reach and hopefully give them the resources they need to deal with cancer and what they're going through. So Spotify, Apple, wherever you listen, should have a five star rating option, and you can leave just a one sentence review. And that would really help us reach a larger community.
Ella 1:26
So it's hard to believe it - that we're already wrapping up the fall, but we are starting to transition from autumn and the treatment season into winter. I hate to even say that out loud. Here in Michigan, winter is pretty brutal. It's often very cold and comes with a lot of snow. And on the podcast we’ll be moving from the season of treatment into isolation. So as we've talked about before, the metaphor of the seasons, we're moving into that next season. So we just thought today as a way to kind of finish out and reflect on this treatment season that we've been walking through together, we would spend some time just reading through and reflecting on some of Kayla's writing and some other authors as well. Words were a coping mechanism for Kayla especially during this time and I don't want to speak for her, but I think she found a lot of healing in putting her feelings into words. And so we just wanted to kind of reflect on some of her poetry and how it related to specifically my treatment as we close out the season together.
Kayla 2:48
Yes. And I do want to just say that if writing or journaling is something that you might be interested in, a lot of support groups have writing or journaling options. I happen to lead a writing workshop once a month at our local chapter of Gilda's Club. That's a nationwide organization, and I would imagine that I can't be the only writing workshop available at Gilda's Club, so I bet there might be some near you. I also know that Elephants and Tea - an organization we've mentioned before - they specifically target the adolescent young adult age group, but that's like 18 to 40 for them, and they encourage a ton of reflective writing. They publish magazines with patient and caregiver writings, and there's tons of online virtual opportunities to do journaling prompts for them. They have a beautiful journal you can purchase, I believe, or you get through the writing workshop that has some great prompts related to cancer journeys. And so if as this episode progresses, you're feeling like this is something that would be beneficial for you, please Google resources near you and we'll have links in the show notes to some as well. So like I said, writing down some of my feelings and experiences while she had cancer was healing for me. I will say some of this was written after the fact, when I was still stuck in a sense of bitterness, and it helped me to kind of go back and write out how it felt - almost to like, purge the lingering anger and bitterness and sadness from my body. So it's not like I visited my sister at chemo and cranked out lyrical poems. It was a little bit more reflective, and after the fact. I definitely found some solace in journaling, but that's much more stream of consciousness and less tidy, so I don't want the finished product of my reflection a year or two later to intimidate anyone from trying this on their own. Not that they're that amazing, I'm just saying, sometimes, especially with poetry, people are like, “I can't write a poem” - then you don't have to do poems, like, whatever works for you. But this is a poem I wrote called “Counting” and I'll read it aloud. It's pretty short. And then I'm so curious, like, your reflections and reactions on some of these, because this was mostly a thing I started for me, and then I eventually shared some on my website and was gearing it towards other siblings. But you and I haven't really sat here and like, talked over how it compared and contrasted to your experience, so I'm interested to hear that. So this poem is called “Counting.”
“Sometimes
It felt like
It was all
my fault.
One time
I'd even said
“You’re gonna get -
cancer”
When my sister went
To a tanning booth.
Little
Did we know.
Little
Did we know
About the crying
The trying
The retching
The counting.
The counting
Of every cell
Every chemo infusion
Every radiation treatment
Every day of isolation
Counting.
Counting.
Counting on -
God?
Are you there?”
Ella 6:07
I think this was maybe one of the first poems that you ever shared with me, when you were first introducing the idea of sharing some of your work and kind of wanting to get my opinion on that, and if I was open to sharing my story/our story in this way. And I want to say this is one of the very first ones that you shared with me. And I just remember I was so struck by… I mean, I love that twist at the end, right? Where you're talking about, like, everything that you're counting in cancer, but then you kind of tie it back to the questioning and how our faith was tested through it all. I mean, I think with the counting, one of the first things that I think of is how there were other people who actually counted every single thing. I think some people find it very - I don't even know the word for it, but it's something to do. I think what we've talked about in this treatment season, right, is that sometimes, weirdly, you find purpose in going to chemo and you find purpose in radiation and it almost becomes your identity. So I think for some people, clinging to being able to count every single little thing is like something that they can do and that they find purpose in. I never really found that same joy or need to count things, right. Like for the longest time, remember we had this Ziploc bag of all of my hospital bracelets. And then I remember one night I think I was just, like, in a rage fit. And I was like, why are we keeping these? Like, why do we have these? Like, I'm not counting these. And I don't know, I just think the whole idea of counting is just such an interesting thing to kind of reflect on through treatment.
Kayla 8:06
Mmm. When you said other people counting, my first thought was the doctors, because like, someone, somewhere is counting everything, right? Like your blood counts, your chemo numbers, like all these things. And it must feel suffocating sometimes to be like under a microscope. You just wish it like didn't matter how many times you went the bathroom or, like, how many fluids you were taking in or all these things. Yeah. I don't even really know where this came from. People will often be like, “what inspired you” or like, “what's your writing process?” And I'm just like, I don't know, it just kind of comes out, which is not very helpful. Yeah, counting. I mean, that's what I named the poem because it sort of ends up repeating that theme. But I think that the biggest emotional punch for me is the - is the time I said, “you're going to get cancer,” which is so silly because that's not what gave you cancer. But I dealt with a lot of irrational guilt around feeling like I like, spoke it into existence. Not just the fact that I told you you're going to get cancer because you went to a tanning booth and I was judging you, but also I was interested in cancer. Like I took a cancer honors course at college, and I volunteered on the cancer floor of the children's hospital, where you eventually got treated. And I wanted to be a cancer nurse. And I just felt like I had, like, attracted cancer to my family, which is irrational. But that was kind of where I was coming from when I wrote this too. That's funny though. I do remember mom saving all those hospital bracelets. Or you - I guess I don't know who was putting them in the Ziploc, but did you just throw them away eventually?
Ella 9:52
I think so, yeah.
Kayla 9:54
Yeah, I do think, like you said, I've seen people take strength maybe from counting and being like, “look at what I've been through.” Kind of in the way that, like in the movies, you'll see prisoners like, scratch the days on the wall of their cell. Like, I think that's kind of the same theme.
Ella 10:12
Well, and I think similarly, like when you're younger or whatever, and you make a paper chain, right, to like count down to Christmas, like, we all know the joy of like ripping off that link and like “we're one day closer.” Like, I can definitely get behind that. And I think I had some of that energy, like, yes, I did know the number of how many chemo cycles and radiation treatments I had left. But I think what you were saying was really good too, like, sometimes you just want to scream like “I'm more than just a number!” and like, “I'm more than all of these things that are happening to me.”
Kayla 10:46
True, even the numbers of your date of birth, right? Name and date of birth, name and date of birth, name and date of birth. And you have like your medical record number. And it's just like, “I’m a human!”
Ella 10:57
Yeah.
Kayla 10:59
I will say something that I've seen the kids do when I volunteered on the cancer floor - I think it's called like Bravery Beads or something. I'll link to it. I think it's like an organization, but these kids get like a bead for every poke and every this and that, like every little thing they go through. And then they have these, like, honestly, you could, like, string them around an entire room. That's how long they get because these poor kids go through so much stuff. But I think, like you were saying, kids with the paper chain, I think that's like a helpful visual for the kids to like, see how brave they had been or whatever.
Ella 11:35
I think this ties in with a blessing that Kate Bowler wrote - what we were just talking about with like, wanting to say, like, “I'm more than just a number.” As we've mentioned before, Kate Bowler: we’re a huge fan of her. She is a cancer survivor, stage four cancer survivor, in her early 30s, and she, just, similarly to Kayla, just has such a way with words and with expressing what can sometimes be really hard to express. And this one is called a blessing for you who feel like the bad thing.
“Here’s a blessing for you who feel like the bad thing.
You are everyone’s reminder of frailty, of life’s cruelty. Your chronic pain or depression or regular scans remind those around you that life isn’t as fair or easy as they had hoped.
Blessed are you who try to hide your humanity. You who temper your complaints, who avoid mentioning your next appointment, who pretend you are doing better than you are to make reality a little more palatable for others. You, who try and try and try to make yourself easier to love, easier to be around, easier to manage.
But, dear one, blessed are you because you are not the bad thing. Your illness or grief or despair or addiction is not too much. It’s just your humanity showing.
And blessed are we who get to see it up close. Who, despite our own fears and reminders of our finitude, get to hold your hand as you face each day with courage as you face things you didn’t choose. It is this kind of courageous living– the kind that shows all the shabby edges– that we are so thankful to see up close.
You, blessed one, remind us that life is so beautiful and life is so hard. And we feel lucky for the privilege to do life with you — no matter how difficult, no matter how messy.
You are not the bad thing. You are a gift. And we love every bit of you.”
Kayla 13:47
Aww, yeah. I always love what Kate has to say. Did you feel that when you were in treatment? A little bit like you were the bad thing sometimes?
Ella 13:57
Absolutely. I mean, I think even more so directly related to the diagnosis period of things, like, I think we had said on a previous episode, right? Like, you get this diagnosis and it not only blows up your life, it blows up everybody who loves you's life too. And so, yeah, sometimes it's hard not to feel like the bad thing.
Kayla 14:23
Yeah, that makes sense. I even thought of, while you were reading her words, like how I've chosen to not necessarily know when your next scan is and how, like, yeah, she says, you know, “you try not to mention your next appointment.” Like I do feel like that's a privilege that I can just be like, “well, don't tell me because I'll stress about it.” It's a reminder that you don't get that option. Another poem I wrote about the treatment era is called “I Can't Imagine.” And I'm so curious your reflections on this one, because I think it'll be obvious but I talk about some of your attitudes during this time. I think in a gentle way, hopefully, is how it comes across. But this poem is called “I Can't Imagine.”
“Helping
or pleasing
became an
odd dance.
We wanted to make her
comfortable,
never to impose with
unwanted smells
Or silently suffered
board games that we
imagined she didn’t really
want to play.
But after being told
to pick which movie
for the 100th time,
she got sick of it.
She hated being the
center
of attention,
being an
object
of pity.
And yet,
God forbid
you pick something
she didn't like.
She was moody,
but had a
pretty good excuse.
An odd dance.
We tried to give her
lots of room.
I still can't imagine
being her.
I still
can't imagine
being us.”
Ella 15:56
I remember when I first read this one, I think I got pretty teary because I was like, you nailed that one on the head. Like, I very much remember… ugh, yeah. Just the feeling that, like, I was such an object of pity for people and hating that. But then, like you said, like, I also kind of wanted everyone to, like, want me to pick everything or to - at times I wanted to be the center of attention because I was like, dang it! Like, pull the cancer card. I should be able to do X, Y, or Z. Oh, it's just so hard because I think so much of the time I didn't even know what I was feeling or wanting or needing. Right. And then, like you guys, those of you in my life who loved me and were with me all the time, like were then trying to interpret those feelings when I didn't even know what they were. It's just so hard. It's so hard.
Kayla 16:57
Yeah. I think at the best of times a lot of adults struggle to name what they're feeling, right. That's why a lot of us go to therapy, because we didn't ever learn how to talk about our feelings. So then you add like, a life-threatening illness on top. And so not only are you struggling with that, but the rest of us… Yeah, obviously you're at the center, so we're trying to cater to you, but we're dealing with our own feelings and it's just such a mess. When I wrote the poem - “I can't imagine being her, I can't imagine being us” - I just feel like that highlights another important part of holding two things that can be true. Like, I'll never be able to understand what you went through, and in a weird way, you will never understand what we went through either. You have a little more now that you've married a cancer survivor, but like not your sister or your daughter, like I certainly hope I never find out. Right? Like what it's like to have a child with cancer, like Mom and Dad went through and like none of us truly understands anyone else's experience.
Ella 18:00
Well, and I think the phrase “an odd dance,” like, it's just such a beautiful way to describe it because, yeah, it is just such a strange thing. And like, I just think… navigating familial relationships during the treatment phase can be so difficult. So I guess I just want to acknowledge that too and hold space for that. So I think this ties in to another blessing that Kate Bowler wrote. This one is called “a blessing for when you mourn what could have been (and it needs to feel okay to say that.” I think some of my moodiness and what I was feeling might have been some of what she's describing in this, but I just didn't have the language for it at the time.
“Blessed are you, friend, sitting among the shards of what could have been. It is broken now, that dream you loved, and it has spilled out all over the ground.
Blessed are you, dear one, letting your eyes look around and remember all the hope your dream once contained. All the love. All the beauty.
Blessed are you, telling your tears they can flow. Telling your anger it can speak.
Blessed are you when mourning is the holy work of the moment, for it speaks of what is real.
Blessed are you, letting this loss speak all its terrible truth to your soul.
Blessed are we who mourn, saying let us remain in grief’s cold winter for as long as it takes, that mourning might be to our hearts the gentlest springtime.”
Kayla 19:49
That definitely gets to kind of what we discussed on our Thanksgiving episode, which is that you can be grateful that you're healthy now, yada yada, and yet still mourn what could have been. Mourn the fact that you could have never had to go through that, even if it's worked out, you know, great, both things can be true. The third poem I thought I would share today, ah… which centers on my wedding because I got married in the small gap between Ella’s two cancers. So she was technically in remission for my wedding and had beautiful short curly hair. Didn't have to wear her wig in the hot July sun, which was great. But I mean, a wedding takes a long time to plan. I got engaged, I think like two weeks before she was diagnosed the first time. And then she relapsed about a month into my marriage. That also speaks to a lot of the themes that I think are woven through this podcast. The idea that it's obviously very difficult for Ella, but it's difficult for the family members of someone going through cancer too. Yeah, I mean obviously I didn't picture my wedding having to ever think about cancer. So, this is called “Here Comes the Bride.”
“Here comes the bride
Full up of pride
For her sister
Maid of honor
Wearing short curls
Not a goner.
Here comes the groom
Patient in the room
That he sits in
While she listens
To more blood counts
As his heart pounds.
Bridesmaid dresses
Chemo sessions
Cake tasting
Muscle wasting
Playlist making
Legs shaking.
These
Are the days
We live in.”
Ella 21:45
Yeah. It's so crazy to me. I mean, I know - I know the timeline of how everything happened, but I guess I - I didn't think about the fact that I was originally diagnosed right after you got engaged and then relapsed, like, so soon into your marriage. Like, it's just wild to think how much can happen in that stretch of time and how… yeah, that really changed the season for you too.
Kayla 22:14
Yeah, thanks for saying that. Obviously it's not like I want to be the center of everything, but we're each sort of the main character in our own lives. So for me, yeah, your cancer is very much related to that season of my life of being engaged, graduating college and being newly married. So… thankfully, my marriage weathered all of that and I think is ultimately better for it. Like we've talked about before, we think our nuclear family of origin has deeper, better relationships thanks to your cancer. And I actually think my husband and I are deeper and better because of your cancer. It's almost like we went through, like, what some couples go through 20 years into marriage, you know, at the very beginning. But it wasn't easy. And it was sort of like trial by fire. And I was not the wife I wanted to be during that season. And we were still trying to figure out, how do you support each other when neither of you has 100% to give? And it's again, one of those things where we are ultimately better, and yet it was a really difficult time. I am thankful for your sake, though, that you were in remission and we didn't know you were going to relapse yet at my wedding. Just because, well, just everyone would have hated it. Like you would have hated it because you'd be like, “it's detracting from your day.” I would have hated it, obviously, because, well, we would have hated it for the obvious reason that you relapsed. But it just also - it would have made this problem we're talking about so much worse. It's almost like the eye of the storm, like the little gap between the two. I graduated and got married and got a job, so I got all my little milestones out of the way. Big little milestones. Because I can't imagine if the timeline had been a month or two shifted and you were back in treatment for my wedding, like that would have been terrible. It was hard enough to plan the wedding with you as my maid of honor during your chemo and stuff originally, but I'm glad you were in remission for the wedding.
Ella 24:20
Well, and you saying that reminds me that I think the way that my scans were mapped out, like the three months or whatever was supposed to be like before your wedding, and I'm so thankful my wise doctor was like, “let's just schedule it for after the wedding. Like, let's have you guys enjoy the day, and then we'll worry about the scans and everything after.” And I am so grateful for that because I agree, I think it would have completely changed it for everyone. And that was just like, such a happy day. Like, I just remember it's really, truly, to this day, one of the happiest days in my memory. Like it was just so fun and so joyous, you know? And I'm just so grateful that we were in blissful oblivion. I didn't know yet.
Kayla 25:11
Yeah. Now I feel like you had suspicions already.
Ella 25:17
Yeah.
Kayla 25:18
Like in May already you had been like, “My lymph nodes are kind of big,” and they were like, “they're probably just waking back up from being suppressed.” But then they didn't get to like that next scan before my wedding. So, I mean, yeah, in a way, that was a gift. I'm glad that you were able to compartmentalize that and enjoy the day, because I think for some people they'd be like, “I absolutely have to get it done, or I'll just have scanxiety the whole time.” So I think it would differ for different people, but it was nice to be in ignorant bliss for that little stretch of time, for sure. Well, in the spirit of covering all the feelings, I also wanted to share a poem that I found on Instagram. I follow the account Mary Oliver's Drunk Cousin and she - her name is Lindsay Rush, and Mary Oliver is a poet who writes beautiful, mostly nature-focused poetry. And so this account, then - she does appreciate Mary Oliver, but she writes sort of modern, almost like millennial woman type poems, and she often turns phrases we all hear on their heads. So she has a poem called “She's a Bit Much,” but then she likes celebrates women being a bit much, or she has a poem called “Shedonism.” So hedonism is about like pleasure, and she makes it about like women, you know, just enjoying life. So the one that came to mind for me when I was prepping for this episode is called “Hysterical,” and I have a screenshot of it and I could not find it on her Instagram anymore. So I hope she didn't delete it and would not like me to read it. But I'm going to read it to you because I just -I love it so much. So this poem is called “Hysterical” by Mary Oliver's Drunk Cousin on Instagram.
“I'm going off the deep end
anyone want anything?
I'm in the market for some
deep, cleansing screams
A few meditative complaints
A mantra or two made up entirely
of curse words
Do they make a rage-spiral-scented essential
oil? How about a ‘worst case scenario’-flavored
herbal tea?
Sounds delicious and insane
pour me a double
I crank up my ‘Unhinged Hits’ playlist
and relax into my hissyfit
If anyone needs me for the next 2 hours
I'll be just down the road
losing my mind”
We try to be reflective and thoughtful on this podcast, but I think we've touched on this before that, you know, sometimes you're just beyond that, and especially in the treatment season when you're just surviving, it can often feel like you just want to have a two hour hissyfit. And so this poem just really spoke to those types of days, which are frequent, unfortunately, on the cancer roller coaster, would you say?
Ella 28:19
Absolutely. And I think just acknowledging that, like, those feelings are valid. And that there's space for those, like - I don't know if it's because we're women or just culture in general. I think a lot of times, like, anger is kind of looked down upon or, you know, somebody tries to put a positive spin on it or minimize your feelings in one way or another. And I just think, like those feelings are important and healthy and normal too. And like, if you're just trying to stuff it or minimize it yourself like, they're going to come out one way or another. So I think sometimes just actually feeling those feelings, it can be helpful and really important.
Kayla 29:07
For sure. Well, that concludes our treatment season. We began in the summer with diagnosis. Autumn was treatment. And now for the winter we're going to be focusing on isolation. So that specifically for Ella did include pretty severe isolation due to a stem cell transplant. But it can apply literally and metaphorically to a lot of cancer scenarios. I think a sense of isolation or various levels of physical isolation is a common, common experience in the cancer space. And even for caregivers and friends and family, it can feel isolating to have a foot in both worlds, so to speak, supporting your person and trying to live your life. So our first episode next week in December, we'll talk about isolating before it was cool. So this all happened to Ella before the pandemic, and we're just going to kind of explore what that isolation was like for her. So thank you for listening along. And you can find us on Instagram @mysisterscancer or our website, mysisterscancer.co. We'd love to hear feedback, send us an email, send us a DM and we will talk to you next week.