Episode 27: Isolating Before It Was Cool

Written By Kayla Crum

Thanks to the COVID-19 pandemic, we all became a bit too familiar with what it’s like to stay away from other people. But years before this worldwide experience, cancer patients were isolated from friends and family for months on end as they tried to heal. In today’s episode, the sisters discuss Ella’s long road of isolation after her stem cell transplant, and what it was like physically, emotionally, and socially.

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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

Hello and welcome back to the My Sister's Cancer podcast. You are listening to the first episode of what we're going to call season three, which is our winter season. We've been moving through the literal seasons with metaphor. So we started in summer talking about cancer diagnosis and all that entails. We moved through autumn and that would be the treatment phase, sort of the acute phase of cancer treatment, chemo, radiation, things like that. And now that we're in winter, we thought that was a fitting time to talk about isolation. So some people  who have cancer might experience true isolation after a transplant of some sort. By true isolation, I mean quite serious and limiting medical rules around who you can see and not see. And some people might just feel isolated during their cancer experience socially, emotionally and/or physically during that time. So that's where we're going here. Before we jump into our first episode of this winter season, I just want to invite you to reach out to us. We would love to end the winter season in a couple of months with a guest episode. A couple of you have reached out being willing to be on the show, which we so appreciate because we would love to have other voices. And if you think you would like to share your story or discuss some element of the cancer experience, please reach out to us on Instagram or at our email, hello@mysisterscancer.co. So we'll put that link in the show notes and you can always find that on our website as well. So Ella, I thought that you could just start us off telling a little bit about your experience of isolation and then we can kind of go from there. 

Ella 2:34

Sure. I really like that you distinguish between different types of isolation, how you were saying there's like the social and emotional isolation and then the actual physical isolation, because I think in my two different experiences with cancer… these played a little bit of a different role. So for example, the first time that I had cancer and I had to move back home and kind of take a pause on college, I definitely think I was more socially and emotionally isolated from people. I just felt so out of it, out of touch. But I was still able to do a lot of things physically with people, right? I was able to go to campus and be around people when I was feeling healthy and when my counts were good, and I was still able to do some of those fun, quote, normal social things again when I was able to, and in a good spot to do that. The second time around, it was much more of an extreme physical isolation. So I think, as we've mentioned before, after I had my stem cell transplant in December of 2017, I was inpatient for about a month, I think, and then stayed in a nearby hospitality house that the hospital graciously lets people stay for a while. And then when I moved home, I was on in-home isolation for 100 days. And so that was an extreme physical isolation as well as social and emotional, because obviously when you're not able to see other human beings, then you feel socially isolated and emotionally isolated. So I guess I just wanted to first distinguish like, my second experience with cancer was a lot more extreme in terms of isolation, but I still experienced it to some degree the first time around.

Kayla 4:48

 Wow. I forgot 100 days until you just said that. That is a long time.

 

Ella 4:54

 Yeah.

Kayla 4:55

 So you got home early January, I think. And then it was like, what would that have been? Almost - that's more than three months. So it was like close to Easter when you were finally free?

Ella 5:09

Like it was like end of March.

 

Kayla 5:11

 Oh my gosh. Yeah. Because it was like 100 days since you engrafted or whatever meaning that the transplant took. 

Ella 5:20

Yeah. So some of those 100 days I think were spent then in the hospital and in the other place that I stayed for those few weeks. But yeah, I think it was like end of March. Sometimes it like, comes up on my memories of, like, when I broke free. And I remember another thing that people might not know. It's not just, okay, you have to stay home and not go anywhere. Like, yes, that's true. I did go to like medical appointments and things though. I mean, I was masked and all that good stuff, but like, I did go to appointments and then come straight home. So I guess that's a little bit confusing. Like there's some nuance there, right? Like in home Isolation, you think, oh my gosh, you don't go a single place, like, I was still having these doctor's appointments and things, which is an interesting thing that people might not know. 

 

Kayla 6:13

And I remember too, because it was like the dead of winter, occasionally, as time wore on, you and mom would drive down to the beach. We live by Lake Michigan and it's all like, frozen over with icebergs and stuff, and nobody's there. You can stay a mile away from the closest person. And so one thing you were allowed to do once you were at home was be in nature or outdoors, as long as you weren't by any, like, live plants, which wasn't a problem in Michigan in the winter, or by other people, whereas you could not have really gone anywhere if it was summertime outdoors. So that's another thing people might not realize is that technically, like, you can go outside and breathe the outside air once you're at home after a transplant, but there's still a lot of rules around it.

 

Ella 7:05

 Well, and with you saying that about the live plants, that makes me think of… we had, I mean, a thick binder with a list of, like, rules and restrictions that we had to follow, like I was on a specific diet. There was a lot of fresh foods that I couldn't eat because they could potentially be growing like bacteria and different germs and that - right? Like a lot of berries or other fresh fruits that like - a list of things that I just like, could not have. And then like you were saying, like we couldn't have any live plants in our home or like, I couldn't be around like dirt or -there was just like a very long list of kind of random things that you had to follow. And even like, our house had to be prepared for me to come home from the hospital. Right? Like our parents’ home had a room with some pretty old carpet in it, as most parents’ homes do, and our parents were kind of on the fence of like, okay, do we get brand new carpet or do we just like, rip it out? And thankfully they had these beautiful wood floors underneath, but then they literally remember, like some family members came over and like, helped Dad refinish the floors while I was in the hospital because obviously, like harder floors can be cleaned a little bit more easily, too, than carpet, but just so many things that had to happen.

Kayla 8:34

 Yeah, I remember mom's sisters came over and helped clean and they literally like, washed the walls. Like they were supposed to literally clean, like, every surface of the home. And top to bottom, like they couldn't hand wash any dishes. So even our like, nicer knives that always had been hand washed started to go in the dishwasher because like that level of heat and like, you can run like, a sterilization cycle, like all these crazy little things you don't think about. And   where did Mom send all her plants? Because she has quite the collection of house plants. I don't remember that.

 

Ella 9:07

 I have no memory of that, I don't know.

 

Kayla 9:10

 She's got plants now. I don't know what happened there. We'll have to ask her to remind us about that. Like, did she farm them out to her sisters? I don't know.

Ella 9:18

 I don't know. 

Kayla 9:19

Good thing you didn't have a pet, too.

 

Ella 9:20

 I know, I know, another thing that I was just thinking about, too, was like going along with the food piece. Like I couldn't have takeout from anywhere, if I'm remembering correctly.

Kayla 9:33

 Yeah, for, like, a long time, I remember that. 

Ella 9:36

And even, I mean, it's a little foggy to me, like, if I could eat food that was even cooked in other people's homes? I don't think so. I mean, it was pretty like…

Kayla 9:46

 Not during that time. So then like the people bringing meals, that had to stop because of like, the germ possibility, it was quite severe. And I was a nurse on an adult bone marrow transplant floor and they actually are not quite as strict, at least at the hospital where I practiced. It's funny, because we were in the same hospital system, I was on the adult side and you were in the pediatric side, and the adult side was just like less rigorous with those types of restrictions. I mean, I'm sure it's evidence based to an extent, but part of it might just be kind of the school of thought in the two different areas of medicine. I always tell people medicine is just like these really smart people's best guesses. Like, I always used to think there was a right answer for every medical problem before I went to nursing school and then realized, like, wow, this is just people who studied, like, all this emerging literature, and they're making their best educated guess and like constantly doing risk versus benefit ratios, like there's not a green light red light situation for most illnesses.

Ella 10:55

 Which I kind of wish there was. Right? Like, I wish that it was like a math problem to solve. Right? And like, do this and this will happen. Like that's just not the case.

Kayla 11:04

 We got strep throat a lot as kids because you had terrible tonsils and would get strep throat. And then you'd give it to me. And then once you got your tonsils out, I never had it again. But all that to say, I remember, like they would culture us, you know, they'd stick that thing way back in your throat and choke you and get a sample, and Mom kind of explained, like, maybe the quick result in the office came back negative, but they would culture it for a couple of days, let the bacteria grow, and then sometimes it would turn positive. So I don't know. That was just my understanding of how medicine worked as a kid. Like it'll turn into yes or no, like green or red light. And it's just like so many of these protocols, especially around complicated diseases like cancers, are not like that. Do you want to talk a little bit about, like, your visitor list and how that worked? Do you have good memories of that or not? Not positive memories, but like a clear memory of that situation? 

Ella 12:02

Yeah, I'm trying to bring back if it was the same protocols when I was inpatient in the hospital and then when I went home, I can't remember if that just like carried over. I think maybe, or maybe it was a little bit more inclusive. Anyway, I think we mentioned this in a previous episode, but I had a list of, I believe it was five people that were able to come visit me when I was inpatient for that long stint of time. So I don't think that included Mom because she was staying with me. Again, the details are foggy, and then when I moved home, I want to say that I - there were a few more people that we added or something. Or again, I don't know, but basically I really couldn't have visitors even once I was home for that 100 days. I do remember my grandparents. I don't remember if they were on the original list, like for when I was inpatient, but they were definitely able to see me once I was home, so I can't really bring back the distinction of that. But I mean, it's really hard to limit your social interaction in person to a list of five people. I mean, I think that just is a hard thing to deal with on top of everything else.

Kayla 13:22

It's funny because sometimes I joke like, how many people do you actually like, right? Like if you're feeling kind of negative, you can be like, how does somebody have ten bridesmaids? I don't even like that many people.

Ella 13:31

I only like five people. [laughter]

Kayla 13:33

But when you really start to think about it like, yeah, variety is the spice of life. And, you know, we have different friend groups in different areas of our life and different people and friends and family kind of fill different needs for us. And so yeah, that sounds really difficult to narrow it down. I mean, I think you had like Dad and Mom and me and my husband and then maybe, yeah, maybe our grandparents. And that might have been it. I think that was it for your hospital time. And then I remember later on, I don't know if this was in the 100 days or afterward. Some of your college friends would come visit, but you literally had to be like, okay, did you get your flu shot? Like, did you - have you been ill in the last - it's kind of like those questions everyone started asking in COVID several years later. Have you felt ill in the last 14 days? Like, that's kind of what you had to do to get your friends to come visit you.

 

Ella 14:27

 Yeah. You know, when you say that, I want to say that they celebrated my birthday, but that fell within the 100 days. Mm. I can't bring all that back. 

Kayla 14:37

I feel like that did happen, though. So maybe it was some sort of like, everyone had to have a shot and everyone had to be healthy. And then maybe they were even distanced, like I don't remember. It gradually got like less restrictive, I think, as time went on. 

Ella 14:54

We also could have celebrated late. I don't know. Friends, if you're listening, let me know if you remember. [laughter]

Kayla 15:04

Oh yeah, I do just - speaking of friends. I'm sure some people listening are like, okay, if someone I know has a transplant or goes through some other type of medical isolation, what am I supposed to do? Like, you can only text somebody so many times. So do you have memories of what was encouraging? What was discouraging? Basically like advice, both for someone going through it and for someone who's trying to support somebody and like, maybe didn't make the list.

Ella 15:36

 That is a really great question. I feel like it's so hard to know how best to support someone. I mean, even I experienced it and I still feel like I struggle being like, this was super helpful or like this wasn't the best way to go about it. And like we've said so many times, I think it's different for every person. And I think it's really important to take the lead from the person who's going through that situation. I mean, I would even suggest a text or a message of some kind, just like saying like, hey, this is super hard. Like, I don't know how to support you through this time. Like, what would be most helpful to you, right? Like, for me, I think it was the friends that did consistently text. I mean, I know a text message like - might not seem like a lot, but that's a huge deal, especially when you're isolated and you can't be around other people. Like even just a text with like, hey, this made me think of you! Or like, hey, haha, here's this funny thing, right? Like you want some of that normalcy and that social banter still in your life. So I feel like that was super great. I had some friends that would like, mail me things like little handwritten cards or notes. I mean, those are just wonderful. I don't know, I think just trying to think creatively of ways to like, stay in touch from afar.

Kayla 17:03

 Yeah, people can't send food and they can't come see you. So I forgot that about the notes. So you could have mail from the outside world at least once you got home.

Ella 17:15

 I was gonna say, I don't know about at the hospital, but definitely, I think, honestly, maybe this could be a false memory, but I feel like we even maybe had to, like, wipe down the mail or like, Mom had to open it for me, or, you know, something like that, where it was like she was kind of like that barrier between the outside world and me. I don't know.

 

Kayla 17:36

 What about your own coping? Because I love those suggestions for friends. I know, like, a weekly Zoom call - nowadays, we're all much more familiar with Zoom or virtual meetups. And so it's like, I don't feel like that was a huge part of your experience. But if it happened now, perhaps that would have been a bigger part. People are just more apt to like FaceTime, Zoom now, or just a lot more used to that in culture, I think, post-COVID. But how did you cope? I mean I know that's like a loaded question. But on days when nobody reached out or you were like, this is my, you know, 87th day with my mom in this house, like, and I'm 19 years old, almost 20. Like, what - I don't know, the good, the bad, the ugly. Like do you have any advice for someone who might be the person actually going through it?

 

Ella 18:32

I will say, and I think this served me really well throughout this time; A) I'm a very independent person by nature. I genuinely enjoy being alone by myself, and I really think that - that if I was not that way, this would have been even harder for me. Like, this was really a difficult thing for me to go through. But I think if I was more - honestly, Kayla, like you're - if I was more like you. 

Kayla 18:59

Yeah I would not have done well. [laughter]

Ella 19:04

[laughter] And, and I think that's not to say, of course, that I don't love being around people, that don't sometimes recharge with people, but at the end of the day, like, I really value being alone and like, it doesn't impact me in the way that I think it impacts other people. I will also say, when you were saying like that about FaceTiming, it made me think, like, I know a lot of people in my life who are like literally talking to their friends on the phone, like almost every day, or like texting nonstop with friends or FaceTiming or whatever. I'm just not really that kind of person. Like, I try to stay in good touch with my friends, but not to that extent. So I think in some ways, like, again, I think that served me pretty well in this time, because it was like I didn't feel the need to be constantly in touch with people, because that's just not really how I've done friendships in my life. And I think, again, it would have just made it even harder if I was like, so used to, just like that constant stream of communication and then like kind of being cut off. But in terms of like, coping with it. I don't really know that I like, took steps to have healthy coping mechanisms, like in the moment, right? Like I've said before, I think a lot of this time of my life is just a little bit foggy around the edges. Like, I'm not entirely sure what I was doing to make sure that I was like, taking care of my mental health. I did journal quite a bit, which I think that was really helpful. Even, you know, like if you're disappointed that you haven't heard from a certain friend or something like, instead of just like stifling that or stewing on that, like I was able to get a lot of that out and just kind of write about other people and thankfully, like, and I'm so grateful for this, even after being home with them for such a long extended period of time, more than once. I've always had a very open relationship with Mom and Dad, so I think I was able to process a lot of it with them and kind of in many ways get most of my social needs met from them as well, which is, I guess, a huge gift that I had that open, honest, fun, supportive relationship with them. Because I know that's not the case for everyone.

Kayla 21:25

And let's be real, Netflix is the real MVP.

Ella 21:30

 Oh yeah, I watched a lot of TV. [laughter]

Kayla 21:33

What - what are your top show recommendations? What do you remember watching at that time? Like, you know how sometimes you can be like, oh, I watched this show when I was like, in this time of my life, do you have a lot of those associations or was there just so much TV it's just like a brainwash?

Ella 21:48

 Yeah, honestly, not really. But I will say there's been multiple times where, like, you and I will talk about a show or something, or like a show will come up and I'm like, oh yeah, I've seen that. Oh, I’ve seen that. And you're like, what? Like, when did you watch all of this? And I'm like, when do you think I watched all of this? [laughter] I feel like some of the classics, like, I think that's when I watched “Friends” and “New Girl.” Yeah, all the good ones. 

Kayla 22:13

I feel like people are going to take issue with you putting “Friends" and “New Girl” in the same classic category, but, we’ll let that one go. I remember you and Mom finished “Bones,” which is this like ten season show, and I had been watching along and then like, you guys got ahead of me and finished it, and I'm still mad about it, but you kind of had a lot of time to fill. [laughter]

Ella 22:36

 Yeah. [laughter]

Kayla 22:36

 Oh, yeah. I guess just before we sign off today, I wanted to broaden this a little bit because this is something that does apply to people outside of the cancer world. I worked as a pediatric allergy and immunology nurse, and so some kids who have autoimmune diseases or adults can have various points of life or long years of life where they basically have to live in a bubble. I mean, I think we've all heard about like, Bubble Boy or whatever, which was like this thing in the 80s. There's like a “Seinfeld” episode about a bubble boy, but it's really no laughing matter. Like some people live what you were describing for years, because we don't have adequate treatment for their autoimmune disease. One kiddo comes to mind where they had finally gotten some treatment and been cleared to start to integrate into normal life. And then COVID hit and I was just like, so devastated for this family because they had spent like four plus years living how you just described as a family and then had to just go right back to being isolated. So this is definitely something that applies outside of cancer. I also think of social isolation for a lot of like elderly people. I think that it's so sad, like loneliness is a killer, honestly. And there's even been a recent Surgeon General report about like, the health detriments of loneliness. 

Ella 24:14

I was  just going to say I was just reading a recent study about this and about how loneliness is like, as bad for you as, like, smoking several packs of cigarettes a day. And there's just a lot of, like, upcoming research about this as we, like, make our way out of the pandemic, which is just really crazy to think about. Kayla, I really appreciate the point that you made earlier about how some people live this way for longer periods of time or for their whole life, and I think before we sign off, I just want to hold space for that. And for anyone who's currently on in-home isolation or just having to isolate for a variety of different reasons, having to say no to social gatherings, especially as the holidays come up, that can be really difficult to say no and to have to stay home and miss out on things. And so we see you. You are not alone in this, and we hope that you're able to find comfort and joy this season, whatever that looks like for you. Next week we are going to be celebrating my “transplantaversary” with a special transplant-themed episode. So until then, we hope that you have the best week available to you.

Kayla Crum
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Episode 28: Transplantaversary
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Episode 26: Reflecting through Writing