Episode 29: Cancer for Christmas

‘Tis the season for… mixed emotions. If you’ve ever been going through something tough during the holidays, this episode is for you. The sisters remember the December Ella spent inpatient for her stem cell transplant and hold space for difficulties of all kinds around the holidays.

SHOW NOTES

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Sources and Further Reading:

  • You can reach out to us here if you want to share a story, feedback, or potentially come on the show as a guest

  • Naked eyeshadow palettes by Urban Decay, as mentioned in the episode

  • Monopoly has hometown versions, often found at your local Walmart or toy store

  • Meredith Miller on Instagram; the children’s pastor mentioned in the episode

  • The phrase “have the best holiday, week, etc available to you” is from the wonderful podcast, Pantsuit Politics

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

All is not merry

All is not bright

Up on the housetop

No Santa in sight

Bad tidings we bring

To you and your kin

It’s a blue Christmas

No hair on your skin

The carolers are here

They sing “Deck the Halls”

But with you in the hospital

It’s not like Christmas at all

A red-nosed reindeer

A snowman that talks

Meanwhile for you

It’s hard just to walk

You won’t be home for Christmas

You can plan on that

There is snow and mistletoe

But this year they fall flat

Then I remember

You’re not the only one here

The doctors, the nurses

In my mind they appear

Next year we’ll be together

If the chemo allows

Until then

We’ll muddle through somehow

No need to be merry

We won’t fake feeling bright

We’ll keep vigil like a candle

Flickering hope through the night

 Ella 1:39

Welcome back to the My Sister's Cancer podcast. This is your co-host Ella Beckett, here as always with my sister, Kayla Crum. What you just heard is a poem that Kayla wrote when she was reflecting on the Christmas that I spent in the hospital in 2017. This is our special Christmas episode. Christmas can be a challenging thing when you are walking through something like cancer, especially if you have to spend it inpatient. So we wanted to just spend some time today reflecting on that. On our personal experience with that, but also just a broader experience of how the holidays are not always so holly and jolly. Today, when you are listening, if you are listening as it is released, it is December 21st, which actually happens to be the longest and darkest night of the year. Kayla, you said your church is hosting a service to hold space for the sadness and hard stuff of the holidays. And I just think that's such a cool thing. I hadn't heard of that before.

Kayla 2:48

Yeah, it’s new this year, this will be the first time they've done it. And I instantly loved the concept and wished it had been around back when you were going through cancer, because it definitely was a weird year when, like, I was going to holiday parties and you know, people are wearing elf hats and antlers and drinking, and I knew you were in that little hospital room, like doing nothing. So I think holding that complexity of like, the joy and the hardship is the goal of the service that my church is going to do. I guess as you're listening, like, I'm attending it. So we'll see. But I like the concept, and I think we need to carve out more spaces for this in our culture. I'm bringing this same idea to a writing group that I lead at my local Gilda's Club. We're going to journal this month about the good and the bad at Christmas time, or really any holiday, especially this time of year. There's so many to choose from. And looking at bad memories of the holidays and good memories, and trying to see both the darkness and the light in both, because I really think that, as we'll talk about in this episode, I have some like, little sparks of happy, unique memories from that year that you were in the hospital. And then there's years that are totally normal and you're not - looking back, you're like, that wasn't all holly jolly, especially as you reflect on like, your childhood. And maybe you grow up and learn about family dynamics and whatever. So yeah, I just think there's darkness and light in every holiday. And I love twinkle lights and like, leaning into the coziness of the season. But we wanted today to hold space for both the light in the dark. So to frame our experience for you, in 2017, Ella had her stem cell transplant, which was about a month inpatient at the hospital. It was supposed to happen in October. Her body didn't cooperate, so it got postponed to December, making it right over Christmas. And she was admitted, I want to say around like the seventh; somewhere in there. She had her actual transplant on the 14th. And we know that date because we celebrate it now as her re-birthday, which we mentioned on our last episode. And then she engrafted actually on Christmas Eve. So engraftment means when your body sort of accepts the new cells and lets them start making copies of themselves, which is the whole point. So, that was kind of a cool little Christmas gift for her to engraft on Christmas Eve. Then I remember Mom had like, predicted that day and was like, excited that she guessed the right day that you would engraft. It's like we said, light and dark in all the holidays. But it wasn't, you know, super easy. So we're just going to kind of talk about what it was actually like logistically and emotionally for our family that Christmas. Just as a reminder, Ella was 19 and I was having my first married Christmas and I was 22, so we were already in sort of that weird season that happens in families where the kids are kind of starting to grow up, and you're really releasing some childhood traditions and trying to figure out how you're going to do adult traditions with your parents and things. Our grandparents had also just died the previous year, and that had been our Christmas Day tradition with them. So like we were already in a bit of a natural progression of traditions changing. And then for this to happen also just, you know, added to the mix. So what comes to mind for you, Ella, as you reflect on this very odd Christmas that you had?

Ella 6:37

I think one of the first things that comes to mind is - well, I guess I should back up and say one of our long-held family traditions is that we're the kind of people that go out and get a real Christmas tree, and this usually happens often the weekend after Thanksgiving for us. So we would always go out to the Christmas tree farm. Back in the day we would like, find the tree and chop it down, right. Dad would lay down on his stomach and get his little saw out and chop that thing to the ground. More recently, we've kind of adapted that and we still go to the tree farm, but we pick one of the pre-cut ones. All that to say, this was a tradition that obviously was very important to us and kind of ushered in the Christmas season for us. And so this year, 2017, when I knew I wasn't going to be home for actual Christmas, I think we had kind of an ongoing conversation of, okay, do we still want to get a tree? Like, Mom and I weren't even going to be home at all. It was just Dad, right? Because you were already out of the house. So it was like, okay, are we going to get a Christmas tree like we always do? What is this going to look like? And I just remember we still got our tree like usual. I decorated that tree I think with just my ornaments, which I'm like, I must own a lot of ornaments if I could fill an entire tree. But then - we then drove the Christmas tree - once I had already gone inpatient and like they didn't “need it” at Mom and Dad's house anymore - they drove the Christmas tree to yours and your husband's apartment. Am I remembering that correctly? [laughter]

Kayla 8:20

 Why though? Why didn't Dad just, like, enjoy the tree at home? Maybe because he was also redoing the floors and he needed it, like out of there, remember? Because we did always put the tree in the same room that they ended up having to tear that carpet out of.

Ella 8:35

Oh, maybe. Yeah.

Kayla 8:36

 Also, like I was working nights, my husband was still in school. We were kind of broke. Real Christmas trees or any Christmas trees are expensive. So, I mean, I think it was just like a - if this will work for everybody solution, and bless Dad's heart, like, they took all the ornaments back off. And I remember Mom was like, really thorough because she didn't want any of your ornaments, which were gifts from like grandparents, to like, travel down the road. But then they left the lights on and Dad drove it on his Jeep an hour away to my apartment and, like, set it up in our apartment. And then we put all of our ornaments on. And looking back, I'm like, that's the zaniest thing I've ever heard. [laughter] What in the world? But that's what we did that year. So I don't even know what to say about that. I guess it just goes to show, like the weirdness of, like what happens to your traditions in your life both inside and outside of the hospital, like the trickle-down effect. But it seemed like the best all around solution for everyone in the family. I don't know, I mean, I guess I wouldn't say I have regrets, like Dad was such a good, good sport about it. Like, I don't know, it seems like an odd solution to a problem that didn't need to exist. Like he could have just kept his tree, but that just shows you how much our parents love us, I guess.  

Ella 10:02

I was gonna say, I mean, yeah, they went to the ends of the earth to make sure I had that tree for a few weeks and got to enjoy it. And then I do remember I had, like, one of those really cute little, like, tabletop fake trees in my hospital room, and it was lit up and everything. Not quite the same vibes. You know. It's a little bit sadder and smaller. But yeah I was grateful for that tree too because I was like, you need some kind of Christmas tree even if you're in the hospital.

Kayla 10:34

 And I don't think we've mentioned this before, but there's a volunteer group who decorates the rooms of the transplant patients because they're going to be there for so long. So you got to like, pick a theme. And you picked a beach theme of course. And so they decorated your room and you had like a beach bedspread and they had little, like, starfish and “beach this way” signs. And I just remember like, that definitely made the room a little cozier. Like, they did what they could to decorate it for you, which was very sweet. Did they give you the tree or…?

Ella 11:09

 No. I think we had maybe brought the tree from home, but I do remember they even tied in like some beachy Christmas decor. Like there was one sign that was like, uh, Merry Christmas, and it was like a beachy Christmas tree. And I was like, oh, that's cute.

 

Kayla 11:25

 Yeah. So they really, I mean, they thought it through for you. That's very sweet. So then our plan was, historically, like our little family of four would celebrate on Christmas Eve and do like our traditions and open our gifts then because we would always be at, like, Grandma's house on the day. And so that continued this year. We were like, we'll all celebrate on Christmas Eve, because then it was my first married Christmas, and that freed me up to be with my husband's family on Christmas Day. But I remember my husband got the flu and he had recovered like, enough to see people, but not to see you because you didn't have an immune system. Even though we did have our family celebration in your hospital room on Christmas Eve. My husband couldn't come because he was still, like, germy or whatever. And that kind of sucked in a way. I guess being our family of four like, made sense in that weird situation, but at the same time, like, not exactly how I pictured my first married Christmas Eve. I mean, clearly not in a hospital, but also I would have liked my husband to be there. So that was a bummer. I'm honestly surprised they let me come because, like, I lived with him, but I'm glad they did.

Ella 12:47

I kind of forgot that, honestly, that that happened.

 

Kayla 12:52

 Do you want to talk about your, um, gift that was really not a gift on the morning of Christmas?

Ella 12:59

 Yeah. So for those of you who've never stayed inpatient in the hospital, one of the things that they do in the mornings, so when the shift changes, I think it's like 7 or 7:30 or whatever, right? They come into your room and they write the name of who your nurse and who your MA is going to be for the day or whatever. And I'll never forget - this is going to make me sound really terrible. I - I liked 95% of the nurses that I had, right? Like most of them were absolutely wonderful people. And I really just could not complain about them. But there was this one nurse, you guys, that just… just was not my cup of tea, right? Like, I really tried to like her and to - to tolerate her, but for whatever reason, she just really ground my gears. And Christmas morning, I'm like, you know, Merry Christmas. They walk in to write the nurse's name. Originally they wrote someone else's name and then I think it was switched or something. I just remember Christmas Day. I had my least favorite nurse and I was not thrilled about that.

Kayla 14:19

 Yeah, I do remember that they had put somebody else up there first, because I almost think we had even joked about the possibility, like that's how much she irked you. And again, like she said, all the nurses were so sweet and great and amazing. And they're there on Christmas, like, bless their hearts, right? This nurse just didn't seem to have an ability to adjust her techniques for teenagers. So like, she would talk to you like you were four or five, which is just not what you want as a teenager or anyone who's not a four- or five-year-old. So that was really the fatal flaw, I would say for her. You got somebody else written on your whiteboard, and then like, something must have happened at the nurses’ station where they had to switch assignments around. And lo and behold, you had your favorite nurse. 

Ella 15:11

Yup. They were like, “Psych!” Another thing I remember about Christmas in the hospital was there was a family who extremely generously donated gifts to all of us who are staying in the hospital. Now, I don't know if it was like all of the floors, right? Or if it was just the floor I was on or whatever, but they had even like, asked me for suggestions. So it was like a very intentional gift-giving. And that really stood out to me as just so kind and so thoughtful. And I think it was a family that had been inpatient over Christmas one year for, I think it was even just like, a routine surgery or something. They were so struck by their Christmas in the hospital that then they wanted to give back. And I just think that's so cool. I actually know another mom who, her daughter spent, I want to say one or two Christmases in the hospital. And now every year she fundraises and gets a lot of Amazon wishlist gifts together and donates them to the hospital. And I just think that's really cool that people who have experienced it then turn around and give back to others who are experiencing it too.

Kayla 16:27

 Yeah, I remember you got like, kind of loaded up with gifts. Like we're not talking like a Starbucks gift card. Like I would say, your gifts, like, were over $100 worth of nice stuff, like a nice fluffy robe and like, yeah, I don't remember what all else, but, like, they were, like, high quality items. Do you remember any other stuff you got?

 

Ella 16:47

A Naked eyeshadow palette.

Kayla 16:50

Oh yeah you literally requested that.

Ella 16:52

Which like, I wasn't going to go out and buy that for myself.

 

Kayla 16:57

 But yeah, that's a brand name for those of you who don't know, Naked eyeshadow palette, that's like a nice eyeshadow palette. Yeah, yeah, like $45 or something crazy. So yeah, definitely, that's like another positive memory of like, how generous people can be and I feel like I was there maybe when the child life specialist like, helped coordinate that and like, came around and asked you for suggestions. And I'm glad you were honest and like, put real suggestions on there because apparently they had the means to fulfill it. So. It's super cool. 

Ella 17:30

Yeah, that was really cool. 

Kayla 17:32

I mentioned this earlier, but, it was very weird for me to like, do quote normal Christmas things and go to parties, like knowing that you were always in that room, not doing anything different from when I had last seen you. I mean, this was my first year actually combining holidays with my husband. And then, like our extended family, you and me, still had their parties. It’s not like all the parties were canceled because one person couldn't come. I mean, obviously they were all very kind about asking about you. And I think if it had been a couple of years in the future, we probably would have like, made some sort of virtual accommodation for you, but just like it wasn't as easy or big of a thing before COVID. I remember being at our grandparents’ and just, again, they were so kind and everyone was so thoughtful about you. And yet, of course, we were still going to celebrate Christmas. And so, like, Dad and I and my husband were there, and I think specifically it was easier for me to go to my husband's parties because they were sort of new to me. But to be at our grandparents’ house - our maternal grandparents had passed away, but we still had our paternal grandparents and celebrated with them every year. And that was a big Christmas tradition, too. And so to be there without you and Mom felt so strange. I almost felt like outside of my body, which I think later my therapist was like, that's dissociative anxiety. Which yeah, right? Probably true. You just feel so cut in half when somebody you love is stuck in a hospital for that long. So if that's you this season, just know that like I see that. Like it's hard obviously to be the person in the hospital or their caregiver, but it's hard in a different way to be like, doing your normal life and feeling like I had a string attached from me to you that like, pulled at me no matter what I was doing. Now, what are your memories of, like our actual quote, celebration in the hospital? We were playing a hometown version of Monopoly that we had been gifted as like a family on your, like, little bedside tray table. And I don't know why I just remember it like, I had this intense feeling that we were all going through the motions of, like, we're playing a family game. Isn't this fun? Look at how this game has our local, you know, landmarks instead of the regular Monopoly landmarks. Wow. But like it all felt, just, I hate to use the word fake because we're not fake with each other in our family, but something about it, again, just felt like discordant and like wrong.

 

Ella 20:08

 Maybe forced is the right word.

Kayla 20:10

 Yeah. Forced family fun.

Ella 20:12

 Yeah. Uh, I really - when you say what - what's your memory of our celebration? I don't really have a clear memory. Like, I don't even remember what food we ate, like, because I can't remember. I can't bring back if you guys could, like, bring a lot from home or if…

Kayla 20:30

 Yeah. What did we eat? Maybe, maybe eating just wasn't a part of it. 

Ella 20:34

I don't know, I know we did some gifts and stuff, but… it's just so hard and different, right? When it's like you're not at your home, you're not… you don't have the comforts and coziness and traditions just like, available to you. So you just kind of have to make do. And I mean, I think in general, we're pretty good at kind of just making the best out of things. But it's not to say that it's not challenging. And yeah, I mean, I just think sometimes Christmas is kind of a bummer, or it just looks different than you thought it was going to look. So I guess we wanted to hold space for that too.

Kayla 21:16

 And I have voices in my head right now saying there are people sheltering from bombs this Christmas and, you know, on and on and on. And so if that’s you too, obviously, yes, you can always find somebody who has it worse than you, but it doesn't really help anything or anybody to not allow yourself to mourn or grieve the things that you have lost, whether it's a loved one around the holidays or, yeah, you know, a year of celebrating Christmas with your people like we had. I think that we're best equipped to serve other people when we have dealt with our own feelings. So let yourself be sad if this year isn't your year and be mad or whatever you need to feel, like, stuffing your feelings doesn't help anybody. It just makes you less able to be a productive member of society. It's not to minimize all the other very painful Christmases that people experience around the world. It's just to say, this is hard too. We've mentioned before on this podcast that we are Christians. You know, this podcast has been pretty Christmas focused. It's not to say like, other holidays can't be hard. Whatever your religious traditions are, whatever time of year they might fall, you know, that's all valid. But for us, Christmas does have that added layer of the coming of Jesus as a baby. And I don't know if I was told or I somehow got the idea that Jesus was born to die, isn't that great? Like even around the Christmas season, we kind of make it about Easter. We're like, he came to save us from our sins and like, that's all good and fine. But I think that Christmas should be about Christmas. And I'll link to Meredith Miller, who I really like. She’s a children's pastor who recently wrote a book. But she talks about, like, let's focus on Christmas at Christmas, especially with our kids. And you know, Emmanuel, one of the names of God, means God with us. And the point of Christmas is that Jesus came to be with us in our hardship. So it's not that Christmas is, “Quick. Look away from your hard stuff and look at these twinkle lights and these presents and everything. Great. Hooray, hooray!” It's, “Yes, you're right. It is so hard and it's so sad and I'm coming to be with you in it.” And I just think that is kind of the whole posture we've been talking about through this whole podcast. People don't often want clear cut distraction from their pain, unless they've asked for it directly, or avoidance of their pain. People want somebody to say like, “Wow, that sounds so hard. I'm here for you. I'll just sit with you.” Like just being present with people. And that's what Christmas is all about. If you're a believer in Christ, like he came to be with us and, you know, you could get into whole theological debates about why doesn't he hurry up and fix everything? And that's a topic for a different podcast. But He does promise to be with us in it. Even while it's not made perfect yet. So that's just the theme we wanted to end on. I think it wraps up the - the good and the bad and the parts we don't understand. Why things had to happen a certain way and things like that. And all we have is each other. And, you know, if you have faith, it's really just dwelling together. And that's all we can do. So. We hope that you all have the best Christmas available to you, whatever that looks like this year, and just know that we're holding space for all kinds of holidays. All kinds of feelings. We will be taking a break next week. So Thursday the 28th there will not be a new episode of My Sister's Cancer, as we just take the week between Christmas and New Year's off to be with our families. We hope that you get some of that rest and rejuvenation during this time too. And if not, we see that. And if you're a doctor or nurse, thank you, thank you, thank you. Because we've been on the receiving end of that amazing care. And that doesn't stop for the holidays. And a variety of other jobs don't stop for the holidays. So we see that as well. Thanks as always for sharing your time with us and we'll see you in 2024.

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Episode 30: New Year, New You?

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Episode 28: Transplantaversary