Episode 22: College and Cancer
College is hard enough as a freshman - eighteen and out of your parents’ home, trying to juggle friends and classes and sometimes a job. Then add cancer. In today’s episode, the sisters discuss what it’s like to be a college student with cancer (or the sibling of one).
SHOW NOTES
Sources and Further Reading:
The National Center for College Students with Disabilities - a great starting point for resources as this is a federally funded, nationwide program to assist students
An email template to let your professors know about your sibling’s cancer. This was originally geared toward bosses, but could be tweaked to be sent to anyone who needs to be in the know, and could also be edited for use by the cancer patient themselves.
Ella mentioned watching “The Bachelor” with her dorm floormates. In case you’ve had the good fortune to not know what that is, here’s the link if you’re curious.
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
Welcome back to the My Sister's Cancer podcast. I'm your co-host, Kayla Crum here, as always with my sister Ella Beckett. We are so glad you're here. We know that some of you may be new listeners thanks to a short feature we had the honor of participating in on NPR's Morning Edition. We were interviewed by Claire Murashima about our podcast and our experience as young adult siblings going through cancer. So that was just such an unbelievable opportunity. And we'll link to that in our show notes if you want to check that out. It was like a 3.5 minute feature. And they have an article with photos as well. So if you're new to us, if you came to us from NPR, thanks for joining. We hope you like what you're hearing. We have a website for our podcast. Each episode has a resources page with a full transcript and show notes. So links to further reading and things that we've referenced in the show. We also have a Patreon, which is a place where you can support us for $5 a month, and you can also find us on Instagram @mysisterscancer. So with that housekeeping stuff out of the way, today's topic is college and cancer. So we've touched on college before. A huge part of Ella’s story is that she was diagnosed the first time with lymphoma, a day after moving into college. Today, we're really going to drill down into what that meant for her throughout her entire college journey. I think sometimes it seems simpler from the outside. You know, you go take care of the cancer and then you can just jump back in and do college. But it's very messy and not that clean cut. So why don't you just give us a brief timeline of your college experience, and then we'll kind of talk more about different elements that were difficult throughout that time.
Ella 2:34
This, in theory, should be a simple question to answer, right? A college timeline. You graduate from high school, you go to college in the fall, you're there for four years and then you graduate and life is great. That was not my experience, and I know that's not the experience for a lot of people. So, like Kayla said, many of you might remember I was diagnosed the day after I had moved in, in the fall of my freshman year. I made the difficult decision then to move home and to take that first semester off from college. Thankfully, I hadn't started classes or anything, so it was pretty easy. I'm putting easy in air quotes. Not entirely easy, but to defer my classes and just not even start them that semester. So I took that fall semester off, went through cancer treatment, was declared in remission in December. Hard to believe, I went right back to college then in January, for that second semester of my freshman year. I was there for 3 or 4 months, whatever it is through May. When I was home for the summer, I decided to take summer classes at community college in an effort to keep up and make up for the classes that I had missed. So I took a lot of gen eds, things like that, just getting some credits in. And then unfortunately, I was re-diagnosed at the end of that summer. So then I had to take an entire year off, so first and second semester. And then I was finally able to go back that next fall to finish college. And then later on, the pandemic hit. So that kind of threw things off too. But yeah, my college career was absolutely not linear. And so… I think whenever someone even like asks me, like, to briefly recap, it's like, oh my gosh, how much time do you have? Because college was just kind of a hot mess for me in many ways, and was just kind of all over the place.
Kayla 4:41
And I think that it's becoming more accepted that a lot of kids maybe don't follow a traditional four-year path anymore. But I don't think that the idea of a dorm room for your experience has left our cultural psyche. I think that's still what we're sort of raised to expect, at least for us. We're like 90’s babies. And I'm curious, for our younger listeners, if that's still the case. I think we're maybe starting to normalize, you know, go to trade school, go to community college.
Ella 5:14
Yeah.
Kayla 5:16
But culturally, in the movies, you know, what they push at high school is the four year college experience. And everyone says it's the best four years of your life, which no pressure. Um, I always felt like really? Like it's all downhill from here? That's really depressing. I'm working really hard right now to get all my homework done. And you're telling me it only gets worse? Spoiler alert, I actually don't think those are the four best years of my life, but I guess that's up to everyone.
Ella 5:43
I really hope not, because my four years, well, it turned out being like what, five or six years? Yeah, honestly really hard.
Kayla 5:51
So I just think that speaks to like, the cultural idea of college. Just like, it's going to be amazing because you're like, an adult with freedom, but you also don't have any responsibilities. But for those of us who are like, try-hards and Type-A and quote “good kids,” you do have responsibilities. And if you need a job, you have a responsibility, right? So anyways, I'm getting a bit beside the point. All of that to say, college is a big deal even as a healthy kid. I mean, it's sort of seen as this rite of passage. You leave your parents’ house, they tearfully hug you goodbye and leave you to your little freshman orientation. And then, like, you live that dorm life where you're learning how to, like, coexist with other people. And most of us have only lived with our nuclear family, and it's just so many changes and growth opportunities. I think a lot of people would say their freshman year was really difficult when they were totally healthy.
Ella 6:43
Yeah.
Kayla 6:44
So layer cancer on top, you know, and disrupt that freshman year and the years to follow. And I just can't imagine how hard that must have been for you. I think one thing I want to ask you about first - you mentioned you made the difficult decision to defer that first semester. I kind of remember it as a strong suggestion from your oncologist.
Ella 7:08
Yeah.
Kayla 7:08
And if I understood right at the time, it was mostly the dorm living piece that she was worried about. Is that right?
Ella 7:17
Yeah, because a lot of the chemotherapy drugs that I was going to be on, as we've mentioned before, they destroy your immune system and you're not able to fight off infections, colds, flus, even, you know, small bugs like you would be with a, quote, “normal” immune system. When you're living in communal living with that many people who are going to get sick, that’s - it just wasn't a safe option. So I think I probably could have done classes from home and then maybe like, commuted or something, but that really wasn't an option available to me either, just because we were 45 to 50 minutes away. And this was pre-pandemic, so like virtual or hybrid learning I don't really think was on people's radar as much. This was back in 2016. So yeah, I think it was a strong suggestion and it also just made the most sense to me because the thought of trying to start college in the midst of all of my diagnosed things was just like, not appealing to me.
Kayla 8:28
And I think you made the right call, later knowing how much of a physical toll it took on you. I mean, I think you needed a lot of care from mom. I can't imagine learning to care for yourself in the way most college freshmen do while going through chemo. I'm curious if any of our listeners did the dorm thing. I mean, maybe their chemo regimen was different or they were on traditional chemo and like, did cancer while also living in that type of communal space. I'd be really interested to hear if anybody experienced that. But then you kind of did when you went back, you were in remission, but like you still had a wig and were still on a lot of pills and had a lot of checkups. And you went back right after Christmas for that second semester.
Ella 9:11
Yeah.
Kayla 9:12
And I mean, I don't want to speak for you, but in retrospect, do you feel like that was a mistake?
Ella 9:16
Uh, yeah. Looking back on it, I honestly don't know how I did that. Like, I think that all the time. I'm like, first of all, I mean, I hadn't even really processed what had happened, and it was so fresh and so new. But then I think in my brain I was like, “Okay, if I just get back to college, like, everything's going to be okay, right?” Because then I can have the four years that I pictured, but it's only going to be three and a half years. But that's okay. Like, I can just get back to living and whatever, all the social experiences that I wanted. And you know, I wouldn't be that off track with my classes and blah, blah, blah. But like, looking back on that now, I'm just like, I don't know how I did that physically. I don't know how I did that emotionally, and I really don't know how I did that, like mentally and academically. I just think it's a little bit wild.
Kayla 10:15
Selfishly, I'm glad you did it just because we got that one semester at the same college together. We went to a college that a lot of our family members historically have gone to; it's sort of this big family thing. So it was special for us to share that semester. You even took an on-campus job where I was the student supervisor, which was fun. I don't think it was your favorite job, but it was fun to work together for a few hours a week. But yeah, I think back on that and I'm just like, I wonder if, you know, that summer you took community college classes closer to home, and I wonder if that would have been like, a better on-ramp at the time to, like, do that in the spring semester too and then go back and move in in the fall after you're like fully recovered. Which clearly we know now would never have happened because you relapsed. So I don't know. I don't know. Mistake is probably too heavy of a word, but I guess if we were like, recommending to anyone listening: “Yeah, finish chemo and then four weeks later, move into a dorm” - maybe not the easiest path, or maybe not the best route. Especially if you've never lived in a dorm before. Like, you had to learn how to do all that and recover/hide your baldness and all of that. So. And then I felt so bad for you because you caught up over the summer. You basically had one year of college under your belt because you worked so hard all summer, despite like, my wedding and like, we live in a beach town - like you dedicated your summer to catching up and making up those classes, and then you relapsed. And so, like, it was kind of all for nothing. I mean, you got the credits. But you didn't get to, like, jump back in as a sophomore in the way you intended. You still ended up a year behind your classmates. So that sucked.
Ella 12:03
Honestly. Yeah. That was one of the hardest parts for me was like, I mean, relapsing in and of itself was so difficult, but I was so mad because I had been robbed of so much of my freshman year of college that I was like, just so desperately looking forward to my sophomore year and then to be robbed of that entirely, like, because like you said, yeah, we had that one semester together at college. That was my only one semester that I got to live in the dorms. Like, I got robbed of that full second year when I feel like, for a lot of people, that second year of college is great because you have a lot of your social structure established, you kind of know your way around campus. You know what dining halls you like, et cetera. And then, yeah, when I finally could come back, then a full year later, all the people that I had been in the same grade as were already going to be juniors when I was going to be starting my sophomore year.
Kayla 13:06
Yeah. I want to ask you about the logistics of coming back, because like you said a little bit ago, it was somewhat easy to defer your classes. We all know that's still difficult to like, work with - what do they call it? The registrar's office. And do all of this like, academic hoop-jumping and then coming back? I always think cancer can be such a… tricky disease because you can have a variety of issues with your body that can be everything from, you know, you had neuropathy in your feet that made it difficult to get around campus. Some other people might have colostomy bags or immune system needs that mean they need special accommodations in their dorm or in their dorm bathroom. Or they might need, like, sharps container access or the ability to leave class. Whatever, I don't know, there's just like so many things and cancer can affect really your entire body because any part of your body can get cancer, that I think it's difficult working with staff at a college, or I would imagine a high school or whatever learning institute, to kind of explain, here's what I need, when like you might not even know at the beginning of a semester as your body's trying to like, recover. So what was your experience? I know you worked with like, a - was it called a disabilities coordinator? I'm not sure what the role was, but somebody tried to help you navigate that.
Ella 14:34
Yeah, I think that is the title. I can't say I'm in love with that title. I think that could be changed, but I think that is what they call it specifically at the college that I went to. But I think what you were saying is a really important piece to draw out. It's like college staff members, in my experience, right? Like they want to make it a good experience for you, but I don't think they necessarily know how. And at 18 or 19 years old, I didn't necessarily know what could have made my college experience better. I didn't really know the support that I needed. I will say I have very clear memories of like, taking on too many classes, too many credit hours and having to withdraw from a class or whatever. And like they were helpful with that, but they were also really helpful with things like… I remember my disability coordinator got me a handicap parking pass, which was huge for me because like you were saying, a big piece of college is you're walking everywhere. Like you are walking probably miles a day to get from one building to the other to the other. And it's often on a time crunch. And I remember so many times feeling very stressed that I wasn't going to make it from point A to point B in the eight minutes I had or whatever. So that was super helpful. She got me a handicap parking pass, so there were a lot of instances where I could drive to class, park close to the building, and then just walk in. But yeah, I would definitely recommend to people who are in college and might need that extra assistance, even if you don't know what it is like, I would just really encourage you to seek that out. And I believe it is through, like, the registrar office or whatever. There should be some sort of disability coordinator supportive person there that can really help you navigate some of those things. Even like you were saying, Kayla, like, you might need extra time on a test because your brain is foggy. Like they can probably make that happen for you, but you probably are going to have to ask for it, which is kind of hard.
Kayla 16:48
I like your advice to just get in touch with that person from the get-go, because even if you don't think you need anything at the beginning, having that person already identified who knows your history, I think is crucial for when, you know, three weeks into the semester, you realize you're drowning because of XYZ, and then you can reach out to that person and say, “Hey.” You know, “Here's what I need,” rather than at that point in the semester, when you're already stressed and meeting deadlines, try and explain your whole story to a new person, right? So like if you have the opportunity proactively in an academic year or semester to get in touch with whatever they call it, a disability coordinator, please, please do that. There's no shame in that. And they're there for people with a variety of disabilities: learning disabilities, physical issues, like some kids come in with chronic stuff from their whole life. But just because yours is new as cancer doesn't make it any less difficult to navigate.
Ella 17:50
Yeah, and I think establishing that relationship early on is really good too, because like, heaven forbid, you know, you relapse down the road again or something, like maybe you're partially into your college experience, like, your health is precarious. It's helpful for someone to know that from the get-go so that they, if, you know, disaster arises or whatever, then they'll be in your corner when you need them. And also, like, I don't really remember this being too much of an issue for me, but I would also just let your professor know if it's relevant. Like, hey, I just went through all of this. Like, especially if you have doctor's appointments that might come up, something like that. I think the more that you can just be honest with people and kind of let them know where you're at and what you might need in terms of support can really be helpful, even though it's really humbling to, like, have to re-explain over and over, I think it can be helpful along the way.
Kayla 18:48
I would imagine you don't always want to be that girl with cancer, right? Or that girl who needs accommodations. Like, I think we're sort of raised, especially in America, to have that bootstrap mentality and, like, not ask for help until we're on death's door. But I do think the more you can just be honest about your limitations from the beginning, right? Like a professor is going to take more kindly if you send them an email at the beginning of the year saying, “Hey, this might not affect my work, but I just don't know. So here's my diagnosis.” Rather than at the 11th hour, you're like, “Can I get an extension, I have cancer.” Like, it's going to be better if you preemptively told everybody.
Ella 19:29
“Yeah, um sorry, I can’t turn in that paper because I have cancer. So sorry.”
Kayla 19:36
They might get a lot of like “My, you know, my so-and-so died” or, like, right? Unfortunately, I think they probably get a lot of sob stories later in the semester, some of which are probably unfortunately true and some of which are not. So if you can just establish it from the beginning - I will say, I even told my professors when you were diagnosed. It was my senior year of nursing school, there was a lot on my plate from an academic standpoint, and I just told all my professors because I wanted to be able to be with you at the drop of a hat, if I had to be. I don't know that I ever really used any accommodations. In retrospect, I probably could have asked for more grace, or it maybe was offered and I didn't take it. I have that tendency, which I now regret. Just giving myself longer timelines on things, I think, would have been a good gift to myself for my mental health, because I was doing a lot of time seeing you and visiting you at the hospital and stuff. But yeah, I even told my professors. I didn't get like a coordinator or anything because I wasn't the one with the issues, but I just wanted them to know what was going on in my life.
Ella 20:46
Yeah.
Kayla 20:47
So the last piece of logistics before we move on is - you were 18, like 18-and-a-half when you got diagnosed. And college is always a weird time because you're technically an adult now, but your parents are still usually a big part of your life and have a lot of say. Like even the college will reach out to your parents, I think, if things go south, like they definitely still treat you like a student who has parents back home, and yet you're a legal adult to make your own choices. So for you, I remember like, you had to sign something to get mom to be the primary contact instead of like, your phone. And I totally respect that because some people don't have parents that they would want answering their medical calls. And obviously it should be like that once you're a legal adult. But I just wanted to briefly highlight that, because sometimes that adds some hoops or technicalities in this age group of cancer patients that you have to kind of navigate.
Ella 21:49
I think I just didn't even want to have to like, worry about that or whatever. Like in many ways I was like, Mom was just so great at doing all of that stuff. Not that I wanted to just, like, dump it all on her, but think, especially when I went back to college, it was like, I just wanted my focus to be on that. And then, like, in many ways, I think that was a coping mechanism, too, because I was like compartmentalizing the cancer stuff, you know, like, okay, mom can just delegate to me what needs to happen and when. Like, I just didn't even necessarily want to field those calls.
Kayla 22:29
And I think the key here is for the college student who is a cancer patient, whatever is the least stressful for you, right? Like if your parent is not good at navigating that stuff, and you would rather field that, that's your choice. Don't feel pressured to sign that over to your parents. On the flip side, if you have a parent who is great at managing that and you trust them with your information, yeah, don't feel pressured to field all those calls yourself. Like basically, again, as we always say, be your own advocate. If you're a legal adult, you can make that decision either way and whatever works best for you.
Ella 23:07
Mhm. Totally.
Kayla 23:09
So I want to hear a little bit about the social side of college. We touched on this a little bit earlier with accommodations, but like, you moved into a dorm and had a wig and had the opportunity to perhaps go to parties and things like that. And so what was like the quote, “normal college experience” like with your physical limitations and honestly, mental trauma that you probably still had. That's a huge question, but I'm just wondering what sticks out as a big deal from that time.
Ella 23:46
Honestly, I think in many ways I felt like an imposter. Like almost felt like… I don't know. Or like a poser. Right? Like I was there. I was physically there. I looked fine, but I was like, very much not fine. And I think one of the biggest things that just stood out as striking to me in that season, when I first moved back, was that I just had the hardest time connecting with people. And I think a lot… I think we touched on this in like the superficiality episode, but I just remember thinking multiple, multiple times a day, like everything that everyone was talking about just didn't matter to me. Like, I was like kind of a cynic in many ways. And I tried to go along with, like, all the floor outings and going to dinner all together and watching “The Bachelor” and hanging out in each other's rooms and doing homework. And like so many people on my floor were so sweet and like, very much made me feel included. But it was also very apparent to me that I'd been gone for the first semester. Right. And I felt kind of behind socially and then just struggled, I guess, to connect with people because I just felt like, yeah, I'd been through some stuff. I've always kind of been an old soul, I would say. But then that was just like times one thousand. And then you're tossed into this pool of young adults who are living for the moment and just spontaneously doing what comes to them. And I just wanted to scream like, “Hello!” Like, “Does anybody understand what I'm experiencing? Like, does anyone else feel this way?”
Kayla 25:46
Yeah, that must have been really hard. It's interesting to hear you talk about that because I thought you might reference how you had to deal with wearing a wig in your dorm room, and you had to take a bunch of pills in the dining hall, and you were really tired all the time. And those things are all true, but it sounds like they paled in comparison to the mental toll and the social issues that followed you when you tried to reintegrate - or that's not even the right word, because you had never done college before. When you tried to enter the college space that you had put on pause. I think that's an important reminder for all of us who have not been in your shoes, to be empathetic for people who are coming late, whatever the reason. I know I had some transfer students that I knew when I was in college. And yeah, there was always like this weirdness that you couldn't quite shake with them. College is, unfortunately, a time of relationship based on proximity, and there's a lot of inside jokes, and there's a lot of either dorm or sorority or whatever culture, and it can be hard to break into that, especially if you're coming from a difficult situation. Well, thanks for sharing that, Ella, about your experience in college, and next week we will be covering the joys of a job. So Ella has had a variety of jobs while being a college student who worked during cancer treatment, and I had the experience of working full time when Ella relapsed in a very similar job, a nursing job, to what she was going through on the patient side. So we're going to talk about holding down employment, whether the patient or a loved one on next week's episode. So thanks for listening along. And as always, you can reach us on Instagram or at our website, mysisterscancer.co. There's a contact page there. Or shoot us an email at hello@mysisterscancer.co. Have a good day.