Episode 41: COVID-19 as a Cancer Survivor
Believe it or not, it’s been four years since the COVID-19 pandemic first swept the globe. On today’s episode, we discuss the parallels between pandemic and cancer experiences, and explore how it felt for Ella as a still-recovering cancer survivor to navigate that polarized and isolating season.
SHOW NOTES
Sources and Further Reading:
You can reach out to us here with questions, feedback, or to share your story
Some facts about how stem cell transplant patients need all their childhood vaccinations over again
Link to the CDC landing page for COVID-19 information
Shannan Martin quote on mutual understanding: “I am a house divided against itself. I’m torn down the middle when it comes to living in extremes/binary thinking, and trusting the value of mutual understanding. (Reminder: Mutual agreement is often not on the table.)” Here is a link to her Substack. You can get her essays for free once a month, or upgrade to paid for more (which I do, because her writing is so real you could hold it in your hand!)
TRANSCRIPT
Kayla 0:09
You're listening to the My Sister’s Cancer podcast. I'm Kayla Crum, registered nurse and writer.
Ella 0:15
And I'm Ella Beckett, social worker and cancer survivor.
Kayla 0:20
We're sisters on a mission to care for the cancer community through the sharing of real life stories, a sprinkle of sass, and lots of support.
Ella 0:28
Join us in a new kind of pity party. It's a pity so many of us carry the heavy burden of cancer alone. So let's make it a party and carry it together.
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Kayla 0:42
Hello and welcome back to the My Sister's Cancer podcast. I'm your co-host, Kayla Crum, here with my sister, Ella Beckett. Today we'll be discussing the fourth anniversary of the COVID-19 pandemic. So here in Michigan, where we live, it was about the second week of March 2020 that things really started to shut down and become serious in regards to COVID. And I think March in general is sort of when it swept across the US. So we'll be looking at that in the context of how tough anniversaries are nothing new to cancer patients, and kind of how those types of dates can live in your body and affect you. And also what that experience was like as a cancer family who's dealt with some isolation, dealt with loss of events and life milestones before and sort of that emotional experience of having even more taken away. So, as always, our goal is to empathize with those of you who are in similar situations and educate those of you who are interested in learning more and being supportive. So we hope that's what you'll get from today's episode. So I think the thing that sticks out to me in just the cultural conversation around COVID is I see a lot of memes and social media posts and even hear people use the language of the “before times.” And this concept of like a lot of what unfolded during the pandemic was unimaginable to us prior to the pandemic, and things are still not what they were before. And it's such a good metaphor or like similar path to how I think we experienced cancer as a family. There's definitely this line in our lives of the “before times,” and I've just heard more of that language since the pandemic, and I think that more people now understand what that feels like and understand you don't just go back to normal. Like I think we all learned the hard way we're not going back; like you can only go forward. Mhm. Has that been your experience too in this sort of post-pandemic world?
Ella 3:02
Absolutely. Yeah. I mean I think the parallel that you were just describing is really clear. And I think that's part of why we're talking about it in the survivorship season is because with the COVID pandemic and with cancer, right, it's like you so desperately want to go back to how things were or the “before times,” but that's just simply not an option available to us. And so I think kind of comparing and contrasting the two specifically in the survivorship season could be really helpful.
Kayla 3:37
For sure. I don't know that everyone has connected those dots, so hopefully that can be part of this episode's purpose. Well, I know everyone listening went through the pandemic, so if you just kind of reflect on that time, it really is similar in a way to getting a diagnosis; kind of all of a sudden your world turning upside down. That is what it felt like, I think, when the pandemic began. And then what we would call like the treatment season, where everything was really intense and we were all kind of sheltering in place. Then there was a longer isolation season that had an indeterminate length where it just kind of kept going, and we sort of got back to some normal interaction, but not totally. And that's similar to like recovering from the intense treatment season of cancer. And then now we're all sort of in this survivorship season. Certainly not everyone survived. But dealing with survivor's guilt, dealing with navigating the new world, navigating how we've changed during that time. It's all very similar to the cancer journey. I'm not saying that to take away from the uniqueness of the cancer journey. Clearly we've done like 40 episodes about that. But I think for people who are trying to empathize or like learn how to be supporters or understand what it might have been like for people going through cancer, thinking about your own experience in the pandemic is a helpful framework for that. I do want to highlight, though, how it was extra hard on you in particular, and probably other cancer survivors. So do you want to talk a little bit about what felt unique to you as a cancer survivor during that time?
Ella 5:32
Yeah, I think we've touched on this in an earlier episode when we talked about isolation in general. But I think one of the things that was… I guess I would use the word triggering to me and just really hard was the fact that, like we have isolated before, right? Our family was very familiar with, you know, maybe not the same framework as the sheltering in place lockdown, but like it was all too familiar to us to have to be isolated and to have to give up a lot of your normal daily things. And I remember I posted on Facebook very soon after the pandemic started, because I was reflecting a lot on this and how it just - it felt like cancer all over again in some ways, if that makes sense. I think what was weird for me was I never thought that the whole world, you know, or even my circle of people in the country and whatever would experience what I had to experience and to have to be like quarantined and isolated specifically, obviously, after my stem cell transplant. But I'll just read a short excerpt from this post that I posted toward the end of March of 2020. I said, “Our family is all too familiar with what it means to quarantine, and this period of isolation brings up familiar emotions. I was on in-home isolation for over three months following my stem cell transplant that put my cancer into remission. Never in my wildest dreams did I think so much of the world would experience something similar to what I went through, and it breaks my heart that this is our current reality.” Um, and then I just kind of talked about how, like, grieving the “what could have beens” because I think that's something that, you know, maybe some people hadn't dealt with before, like imagining, you know, how your year was going to go or whatever, and then having that just stripped away from you. It was all too familiar to me. And it was just so strange then to have really everyone collectively experiencing that at the same time.
Kayla 7:51
So at first, was that almost affirming or like, positive? Not that you wished it on anyone, but did you feel a little more, like, seen at first as that happened?
Ella 8:04
Absolutely. Um, yeah. I think right at the beginning and what I kind of parceled together for that post, like I think that's where my brain was, was that I felt, oh my gosh, like, of course I didn't want everyone to have to go through that, but I felt… seen is a good way to to say it; seen and understood a little bit more. And not that I would wish harm on any other person. But it's like in some ways I was like, “See, like, this isn't great to have all that like stripped away from you.” Um, but I think yeah, overall it, it made me feel like people could empathize with me more.
Kayla 8:43
It maybe validated like in your experience, like, okay, look at how everyone is struggling. Like that was hard for me.
Ella 8:52
Totally. Yeah, I think that's a great way to say it. But then I do think my feelings shifted a little bit too; I don't know if it was like as time went on or just in general, but I think I then started becoming… I guess angry is the right word. And a lot of the people in my life and I - again, I think social media is a blessing and a curse. Right? But being still immunocompromised, uh, very much so, still, in 2020, I did have to take the pandemic extremely seriously, and I was pretty much not leaving our home or doing hardly anything. And so then, of course, I started developing jealousy, anger, lots of various negative emotions at the people who appeared to still be kind of going about their lives or not following, you know, the procedures and the safety things.
Kayla 9:52
I can imagine that it felt a little bit unfair. Already your cancer was unfair, right? We had a whole episode about how life's not fair, and there's just this sense when something bad happens to you that it's not fair, which, you know, nothing's fair, really, in this world. But the fact that other people had the agency to disregard recommendations and you didn't, probably rankled; like you hadn't had that option when you were recovering from cancer, and now you didn't have that option again. And so then to see people after literally like only one month or so of isolation, whereas you just said you had three months of isolation after your transplant, start to like get sick of it and decide they weren't going to listen to some rules. Yeah, I can see how that was angering. And for those of you who haven't listened to maybe the transplant episodes, they really do remove your whole immune system and give you a new one. So Ella had basically a newborn baby’s immune system, like she had to go through and get all of her childhood vaccinations over again. So all those things like DTaP and MMR and all those like vaccines you get for kindergarten, like she had to get those all again. And so she wasn't even fully vaccinated as like a regular adult when this happened. She was kind of like a kindergartner in her body. And I think now you're caught up. Right? But it took over a year or more to get all those vaccines; a couple of years. So it was like you were already more likely to get sick in general from, like, the common cold and everything because your body remembered none of it. And then now this new virus, COVID, it was like, I don't even want to go there. And then I'm trying to remember when we got the vaccines. Was it that same fall already for 2020?
Ella 11:50
It's funny you say that because it just came up in my memories the other day. It's like mid-January of 2021 is when I got my first vaccine dose.
Kayla 12:01
Yeah, because I remember I technically got mine the last week of December 2020 because I was still working at the hospital. And so we literally had like the National Guard in there in military uniform, like giving us healthcare workers the vaccines. And we were - I remember being one of the first of like my family and friends who got it. And yeah, it was right after Christmas for me. So what was that like? Were you allowed to get it right away with your health stuff?
Ella 12:28
Yeah, I mean, I think I got it before other people in my life too. And I think part of that was actually my social work internship. They really advocated for us to all get vaccinated, kind of ahead of the game. So that was great. But I also think, yeah, being immunocompromised, like I had higher priority than others too. But the vaccine is just a whole thing in and of itself because obviously, you know, it was somewhat controversial. A lot of people were pretty skeptical about it. And I think I took some of that personally, too, if that makes sense, because, um, I saw the vaccine as like a way to protect the most vulnerable, which included myself. So selfishly, I was like, y'all should get your vaccines, because the sooner we're gonna potentially come out of this, you know? But I think I struggled with a lot of feelings around that, too.
Kayla 13:31
Yeah, it definitely pitted against each other the idea of personal bodily autonomy and caring for one's neighbor. And like, those bumped up against each other and like, didn't always… I mean, what do you pick, right? And I can see where with your immune system, it felt like kind of a personal affront if some of your friends chose not to get vaccinated. They weren't sitting there thinking, “Screw Ella, like, I'm not getting vaccinated.” But I can see where it felt like that, right? You're not thinking about people in your life like me. You know, I also think what you just said a minute ago about getting out of the pandemic sooner is key, because back then the narrative was really like, let's all get vaccinated so that this can get over and done with. Like the idea was, um, what do they call it? Flatten the curve. That was kind of about like decreasing the number of people who would need to be hospitalized all at once. And we really did think that first when the vaccines came, that it would drastically shorten the length of the pandemic. And I guess we'll never know what would have happened had we not had them. But it did drag on much further than people were predicting at the time. But in that moment, it felt like, let's just all do this so we can get back to normal. And I think that was a little bit of wishful thinking.
Ella 14:56
Absolutely. I felt similarly, too, about masks in general. And just, again. You know, it became such a controversial thing and I just really struggled to understand. I mean, I understand that, like, things get politicized and everyone has their own values and beliefs, but that was also hard. And I think I took some of the mask arguments personally too, because again, when you're someone who is immunocompromised and like truly fearing for your life and your safety and your well-being. You just take all of that a little bit more personally. At least I did.
Kayla 15:37
And had you had to wear a mask as part of your cancer treatment? Like when you were out and about?
Ella 15:42
Yeah, yeah. I wore one, you know, when I would go to radiation. I was on in-home isolation at that point, and I'm pretty sure I had to wear a mask. So masks weren’t entirely new to me.
Kayla 15:56
And I can imagine… all the things your body went through with your cancer just two years before the pandemic, might have made you think like, “You can't wear a piece of paper on your face?” Like after you literally were brought to the brink of death and back. Now I'm not - and like we've said, this is controversial and there are people with anxiety and feeling claustrophobic with masks, like there's a valid exception to every rule. But the way it got so polarized and politicized, like you said, was difficult when you were honestly still kind of coming out of a season of your body not really being your own and being in a lot of pain and suffering. And then to have people complain about things like a mask was probably… um, irritating at best.
Ella 16:52
Yeah. And just the overall… I don't have the language for it, but maybe just like the doubt that I've felt that people had in science in general. Right. Like I think that was something I really struggled with too, because, again, right. Science had quite literally just saved my life. Among other things, you know, there's a lot more that went into it. But it's like, if I didn't believe in science, like I wouldn't be here today. So it's like it was hard for me then to understand the people that were really struggling to acknowledge the reality of the pandemic and like, doubting the scientific truth behind it.
Kayla 17:35
Yeah. And like you said, you chose to believe in science and literally gave your life over to the scientific cure. Then to have that questioned. It's frustrating. I still don't understand how it got so politicized in America when like literally the entire world was dealing with COVID. It doesn't really make sense to me. Like some of the arguments on the more extreme ends of the two spectrums or of the two sides were like so unique to American politics. And I was just confused compared to like, other countries, like, this is happening everywhere. This is not an American problem or an only American problem. I think, though, a lot of your feelings… well A) I appreciate you sharing how you really felt and that's super valid. And I just want to remind the listeners, like I said a minute ago, Ella had her transplant in December of 2017. So really 2018 was a whole year of maintenance chemo, radiation, recovery, getting back on her feet quite literally. She had numbness in her feet. So then she had, what, a year and a half maybe to like, go back to college. And thinking, okay, now I had the transplant. I've done cancer twice already in my college journey. Now I'm going to finish strong. Only to have it taken away not even two years later. And I mean, then did that carry through your entire rest of your college career? I'm trying to think about the timeline.
Ella 19:14
Well yeah that's another piece of it is that it was my junior year when COVID hit so I moved home spring semester of my junior year. We finished classes that spring semester online. Everyone did from wherever people were. And then everyone else largely went back in person that next fall of 2020. I made the difficult decision, mostly because of my living situation and not really knowing how I felt about communal living if I didn't have the vaccine and didn't know what other people - what life choices they were making… I made the hard decision then to stay living at home with Mom and Dad and do my final year virtually. Which was also really challenging.
Kayla 20:04
So your whole senior year you did virtual classes? I don't know why I forgot that already. I remember going to your graduation and it was still at the point where they were hosting stuff outside, and we did it at like our local ballpark instead of - because our college didn't have like a big football field. So to get the social distancing or whatever they had to use like a professional ballpark. So I remember going to that. But I didn't realize, like that whole time I knew you were living at home the rest of your college, but for some reason I didn't realize all your classes were also virtual. So did you have, like, no social life your senior year?
Ella 20:44
Pretty much. Yeah. And I mean I think what was especially hard was like again, everybody else pretty much was back in person. So then I was one of like two, maybe one or two people logging on, you know, too - and like bless the professors for like making that an option available to me. But it definitely changed things and made me feel a little singled out. And just like, yeah, not a part of things. But then toward the spring, after I'd gotten my vaccine, like there were a few times where I went in person to class just to be there and like, be present for some of the presentations and stuff.
Kayla 21:31
But then your internship was in the hospital, so that felt like a pretty safe place to be. Ironically. I mean, you weren’t on a COVID floor, so it was like they had pretty stringent protections in place. From my perspective, I remember… I don't want to say I used you as an excuse, but like having your immunocompromised situation just made it very clear what choices I was going to make as far as sheltering in place, masking, vaccine. It was kind of like, well, I want my sister to be a part of my life. And it's not like you gave me an ultimatum or anything, but just like having just gone through your transplant with you and understanding your delicate condition made it a lot easier for me to weigh the pros and cons or the risk-benefit ratio of the vaccine. You know, because there was some chatter about like, fertility and stuff and like, should young women be getting this? And like, I mean, there was chatter about everything under the sun, but it clarified my decision making because I was like, I have to protect my sister. And then for me, in various other conversations in my life with friends and family, I almost feel like your condition was like a shield for me to be like, “Yeah, I hear your concerns. But, you know, I had to do this for my sister.” Like, I feel like sometimes I almost used it as a cop-out or like a talking point, but it really did make my decision that much easier. Clearly also, my job influenced that because we were required at the time to choose the vaccine or leave. Right. Which I think has changed now, but. Yeah. And then my husband, too, I mean, I think that made his decision-making more clear as well. So yeah. Yeah, it's - it's tricky because some of that polarization, right… like, we all made such personal decisions. And I think there's probably somebody - I'm sure there are people out there who feel like they made the opposite decision for their sister or their kid for the same reasons. Right. I heard this quote, or I read this idea from one of my favorite authors, Shannan Martin, and I'll link to it in the show notes. She said something like, “mutual understanding does not equal mutual agreement.” And I - that has stuck with me because I'm a person who tends to be a people pleaser. And I want like, I just feel like if I can explain myself well enough, we'll just all get along and it'll be fine. Like, you know, if everyone just could understand everyone's intentions, then it would be great. And I think that that's just not true. But that… mature people can get to a place of mutual understanding; that doesn't necessarily mean mutual agreement. Obviously, that's tricky when we literally feel like our family member or ourselves has a life on the line. So I'm not saying like, agree to disagree. Everything's fine. That's not what I mean. But I think that that's part of the hard work of existing in a democracy and like where people are allowed to have their own opinions is to try to understand each other, even if we don't agree, right?
Ella 24:59
Absolutely. And I'm really glad that you brought that up because, yeah, as I'm reflecting back on our conversation, I'm like, hmm, maybe I was a little too harsh and too negative. I want to acknowledge, like you were just saying, like maybe someone made, you know, the opposite decision for their sister or for their mom or whatever, like, absolutely. And those are completely valid choices. And I want to hold space for, like, you absolutely do not have to agree with us. And, you know, every person has the right to make their own decisions. I just think it's hard when those decisions affect other people. It's hard not to take those things personally, but they - those people could take things that I do and say really personally, too. And so yeah, it's tricky.
Kayla 25:46
It is tricky. I don't want you to undo or apologize for what you shared though, because your lived experience is your truth, right? Like, I think it makes sense that you had some of those reactions in the context of the early pandemic and as it progressed. So I appreciate you being honest, because I'm sure a lot of people had similar feelings, especially other cancer patients or people with immune-compromised situations. It felt like a personal affront when people started questioning or refusing to follow rules or take medical advice. So it's a both/and; it's like, hold space and this was hard and this hurt my feelings. So I appreciate you sharing that.
Ella 26:32
Sure. Thanks so much for sticking with us today and for… revisiting the pandemic and all the feelings that surfaced with the pandemic and all that came with it. Hard to believe that we are four years out from the start of COVID-19. Next week we will be talking about struggling with ongoing side effects, and how those can really linger in this season of survivorship. So until then, we hope that you have a great week and we'll talk to you soon.