Episode 23: The Joys of a Job

Written By Kayla Crum

Last week we covered cancer and college - this week, it’s cancer and work. Employment can be tough to juggle during a cancer experience, whether you’re the patient or a caregiver. In this week’s episode, we discuss both the emotional and logistical side of jobs for young adult cancer patients and those who love them.

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TRANSCRIPT

 Kayla 0:09

 You're listening to the My Sister’s Cancer podcast. I'm Kayla Crum, registered nurse and writer.

 Ella 0:15

 And I'm Ella Beckett, social worker and cancer survivor.

 Kayla 0:20

 We're sisters on a mission to care for the cancer community through the sharing of real life stories, a sprinkle of sass, and lots of support. 

Ella 0:28

Join us in a new kind of pity party. It's a pity so many of us carry the heavy burden of cancer alone. So let's make it a party and carry it together.  

—-------------------

 Kayla 0:42

 Welcome back to the My Sister's Cancer podcast. I'm your co-host, Kayla Crum, here as always with my sister Ella Beckett. Last week, you may have heard us discuss the difficulties of being a college student and a cancer patient, or their sibling or relative. This week we're going to focus on the joys of a job. So that means a job for the cancer patient, that means a job for their family members and loved ones, and all the different ways that can look, especially in the adolescent/young adult space. So - summer jobs between semesters of school, or maybe your first job out of college. It's sort of an unfortunate time - never a great time, but it's just another way that the cancer experience has its own unique challenges in the arena of jobs, as it does in so many other areas. Before we dive in, just a reminder that you can find us online at www.mysisterscancer.co and also on Instagram @mysisterscancer. We'd love to see you in either of those places. And you can actually email us at hello@mysisterscancer.co. That link is on the website too, and we are small enough right now that we are able to respond to all the messages. And so a couple people have shared their stories with us, told us, you know, what they appreciated about the podcast. And so we welcome that. If you have feedback, constructive criticism, if you want to share your story, we would love to hear from you. We also have not ruled out the possibility of having guests in the future. We don't know what that would look like yet, but we definitely have thought about expanding the voices and experiences featured on this podcast. So if that's something you're interested in and you feel like your story would fit with what we talk about here, feel free to email us at hello@mysisterscancer.co. All right, so Ella - joys of a job. I know for you - you, I guess, had no job when you got diagnosed because you were 18, had just moved into college, and then when you relapsed, you hadn't really had a summer job because you were catching up on college. You did college all summer. But then there were times throughout the next several years during active treatment, maintenance and recovery, where you had school jobs like on-campus, jobs where you had summer jobs. And I just want to hear a bit about what sticks out to you as difficult about that, what you think was challenging as someone going through cancer, trying to do that whole college job situation versus maybe what you saw me go through before you.

Ella 3:35

Yeah. I mean, I think one of the first things that comes to mind when thinking about the jobs that I had throughout this season of my life is the fact that a lot of college jobs in general, like what you think of as college jobs, are not super friendly for people who have physical limitations. So, for example, like you think of serving or you think of, you know, working retail, things like that, like a lot of those more seasonal gigs that you often do throughout those years of your life require a lot from you physically. And I don't think I necessarily would have acknowledged that or thought of that until I was in a position where it was really difficult for me to be on my feet, or to walk distances, or to lift more than, you know, ten pounds. Even in some of the job descriptions, when you're applying for a job, right, it's like you have to be able to do this and be on your feet all day. And all these things that were just like, not options available to me in my time of recovery and regaining my strength. Like you said, I remember clearly I did get a job that first semester that I was back on campus, which again, I think back to that and I'm like, not only was I just throwing myself into a full semester load of classes a month after being declared in remission, then like two months in or whatever, I was also getting a job? Like that's just a lot to manage.

 

Kayla 5:15

 Yeah. In retrospect, like why?

Ella 5:18

 Yeah. And I think some of it was like I wanted to feel, quote, normal. I wanted to feel like, you know, I'm earning part of my way. I mean, I do want to acknowledge, like, the privilege here and the fact that like, thankfully, you know, Mom and Dad were able to support me throughout this time in my life and like… what I'm saying is I wasn't fully dependent on myself to pay my bills, which I am very grateful for. I know that's not everyone's experience, but yeah, I mean, I think I wanted that normal college experience and I did really want to make money as well. But there is just a lot more, I guess, limitations for me than the average college student. That's what first comes to mind.

 

Kayla 6:07

 What you mentioned about your feet, for those listeners who maybe haven't listened to past episodes, Ella experienced and still has some neuropathy from the chemotherapy, like a long-term side effect, and in those days immediately after chemo, you know, when she was freshly in remission, it was really bad, like she had a handicap parking pass for a while. And so you can't, like, scoop ice cream all summer on your feet in that situation. And it definitely, I think, made us think more about people who have physical limitations for a variety of reasons. Whether they've had like a childhood stroke or even people with chronic issues like diabetes, like these types of things can affect the type of work you can pursue. And like you said, these particular, like, young adult seasonal gigs are often catered to the like, quote, “normal, healthy” young adult who can just like grind through. And that's kind of what they want from you in these types of jobs. Yeah, I remember Mom finding you a gig one summer where you could actually sit down and did more like, secretarial and administrative/supportive type work, which was kind of hard to find just for a summer.

 

Ella 7:19

 Well, and they even graciously then had me continue some work remotely, I remember, through like that next school year and even into the next summer. So that was a huge gift for sure.

 

Kayla 7:31

 Yeah, those jobs can be hard to find. I wondered if you would be willing to share a little bit about your husband's experience because… he had just, a great experience, is my understanding, with his employer, and I guess I just wanted people to know that it is possible. And there are companies out there who will work with you.

 

Ella 7:54

 So for listeners who don't know, I am married to a cancer survivor as well, and he actually was out in the real world, so to speak, when he received his cancer diagnosis. He had just gotten his first “big boy” job out of college, when he had a seizure that led to finding out his diagnosis of brain cancer, and his employer was so incredibly understanding and supportive. And then when he went through all of his treatment, like, he'll tell me stories of how - I mean he was, just, like, so sleepy. And they would just let him, like, sleep in if he needed to, like, do what he was able to when he could. They've just been incredibly accommodating really, throughout his whole journey and just so supportive and flexible with whatever he needed. Like if he needed to leave for a little while, take a longer break, like they just wanted to keep him and they made that very clear. And just time and time again, showed him that they valued him as an employee, even though he maybe wasn't able to do everything that they wanted him to do throughout his workday. They just kind of made it work. And he's been with them ever since.

 

Kayla 9:14

 What shocks me about that is that he was a new employee. Because I can almost believe that story - like obviously I believe you, but you can almost expect some sort of good treatment if you feel like you've been a great employee for that company and like, really proven your worth. So the fact that they were accommodating to this brand new, fresh out of college employee who got a brain tumor, like, that's incredible that they acted like that. Honestly, part of that is just luck. Like, I don't want to pretend like that's going to be everybody's experience. But I appreciate you sharing that because it is possible to be treated with care and respect by a company that you haven't even really worked for hardly at all. So props to them. Just for privacy reasons we won't say who they are, but if anyone listening knows who they are, like, major respect to this company. And yeah, unfortunately that's probably not the norm. So this sort of brings me around to my experience. One thing I just want to highlight is that just like we always say, you have to be your own advocate. And that applies to the medical space, but it also applies to your job. So for me, I think I talked in the last episode about - I let my professors know what was going on, even though I wasn't the one that was sick. That applied when I got a job as well. I was working as an inpatient nurse the second time you got cancer, and it literally happened on my second day. So just like the first time you were on your second day of college, the second time was on my second day of my first “big girl” job out of college. And irony of all ironies, I was on a bone marrow transplant floor. And that's what you were going to go have. I appreciate to this day that you were on the children's side. So I did not work on your literal floor. But I was working with the same types of situations and patients, and it was the same hospital, just like a different area because it was adults. So I told them - my new manager and staff right away and… I mean, they expressed care and concern, but I was brand new. So just like your husband, when he had this happen, I had barely started. And the jump from nursing school to being a nurse is a big one anyway, and people often say that first year is pretty difficult, and… for me to be going through a family medical trauma at the same time, and caring for families going through what my family was going through, took a huge toll on my mental health. And I didn't feel particularly supported by my boss or by the company at all. Part of that is probably on me. I have a habit in life that I'm working on of not expressing my needs until I can't stand it anymore, which is not healthy. But part of it is unfortunately, I think, common to a hospital setting. It's this huge company, right. And you're sort of just a number and… it's my sister. And this is part of why I started this whole My Sisters Cancer website, podcast, everything. Especially once I was in “adult world” after college and you got cancer again, I felt like when people would hear that my sister had cancer, they would say something sweet in the moment and then completely forget by the next day or the next week that I was going through that. Something about it being your sibling when you're an adult does not carry the same weight with acquaintances and coworkers as it being your spouse or your child. Obviously, I'm not trying to compare griefs here or say, like, it should be on the same level. These aren't things we can’t quantify. I just felt consistently with multiple people at work that it just was overlooked or not as big of a deal as if I had said, you know, my husband or my child - because I saw other coworkers have situations come up with partners or children or their parents, right, like aging parents. And those more direct lines of family seem to carry more weight, and they literally carry more weight on paper. Because a lot of you have probably heard of FMLA, the Family Medical Leave Act. I'll link to the real details on this. I know it was kind of the United States’ answer to how we don't have any real federal right to like maternity care or any sort of care for anyone. It's bare bones, honestly. Like compared to other developed nations. I don't think I'm shocking anyone by saying we have terrible parental leave policies and caregiving policies here in the United States, but FMLA is something you can fill out if you work for a company that has more than 50 people, you have some rights under this act: that they like, can't fire you for missing your job due to needing to care for your family, but - that doesn't apply to siblings. So that is something I could have filled out if you had been my parent or child or spouse. But as my sister, I'm just excluded from that. If anyone has inside information on this that I am wrong and things have changed, I would love to hear that. Please write us. But when I looked into it, there was no situation for siblings to take time off, which even outside of our context seems unfair. Like not everyone gets a partner or children or parents. You know, like I even wish you could take it for people you're not related to, right? Like some people, their friends or their family, like, especially as we age, I just feel like I can think of people in my own life who this would apply to, where it might be difficult if you don't have that traditional 1950s nuclear family.

 

Ella 15:41

 Totally. 

Kayla 15:42

So I didn't need to miss a bunch of work. So in my case, Ella was very well taken care of by our parents. I didn't need to miss a bunch of work and need that FMLA. But it was just another reminder that, like, structurally, there's nothing for siblings. And if we hadn't had involved parents or our parents were gone, you know, dead or whatever. Like, I don't know how that would have worked.

Ella 16:11

 Is that something - you said when you looked into it. Like, were you looking into FMLA because you were curious if it applied to you, like if you were able to take time off?

Kayla 16:22

I have hazy memories of this time, as we probably both do, but I do feel like someone not at work, but someone in my life was like, oh, maybe you should just get that on file in case you need to take some time or whatever, which is totally a good suggestion. So I did look into it and at that time - about, what was that now, like six years ago? I don't think, or at least from what I could find, it didn't apply to my situation. I do want to say whether or not you're covered by FMLA, I totally recommend telling your boss as soon as you know you are allowed to share the information. Obviously it's up to the patient, but then once you get their permission. You know, tell your boss just so that if an emergency comes up and you have to leave, you can just leave or whatever. If you have HR, if you're at a company big enough, sometimes that's a good place to reach out to too. They might have other things you're not aware of to support you. The other key piece that I think I could have done a better job of is reminding people. So it sucks because the burden shouldn't be on the suffering to remind others of their suffering, right? But especially in a - in a large corporate type company or a job setting where you don't really have a great culture or a great team, you might have to remind your boss or your HR, or whoever. “Hey this is still going on. I still need x, y, z or my output might not be as good or I need x day off.” And I actually have email templates you can download on our website, because I found that this was something - writing comes pretty easy to me, even like email writing. And then I figured that was a tool I could put on our website for people. It's like, I have a quitting email, so if you need to quit either a job or a volunteer obligation or a board because of your sibling’s diagnosis or your own diagnosis, you can adjust that template. There's a “hey, cancer's in my life” email, like the initial email. And then there's a reminder email. And so the reminder email is what I'm mostly talking about right now, which is like, “hey, remember two months ago I told you this?” Like I've noticed that, you know, if you're having issues with getting your time off approved or even with like co-worker attitudes, if you're having to miss work or you're not your normal self. Like, you might just have to remind your boss and your team. I wish that wasn't the case, but people are busy in their own lives and who knows what they've got going on. And sometimes that's what you have to do. 

Ella 19:10

When you were just talking about coworkers. One thing came to mind that I wanted to be sure to mention - is that I remember so clearly… Honestly, I don't remember if it was the first or second time around. I want to say the first, but I could be wrong in that. But some of our mom’s co-workers donated their own PTO time off to her so that she could take that time off paid to be with me. Like they literally pooled their time off so that she could have more time to be home with me. And like, I wasn't yet an adult in the working world, so, like, PTO didn't quite have as much weight as it does to me now. But I remember, even then, just being so struck by the generosity, the sacrificial giving, like that was just - that shocked me. I thought that was so kind.

Kayla 20:08

 That is so kind. I was later, after you were better, in an office setting where people did that for someone whose parent had died unexpectedly. Because I think you get like three days of bereavement or whatever. And of course that's not enough in some situations, right? And yeah, I forgot until you just said that now that they did that for Mom, that is incredible. Because sometimes your work will give you time off, but not paid if you have an extenuating circumstance. So for them to give that up, for her to continue to make some money while she cared for you like, yeah, now that we've been around the block a little bit in adult jobs and we're more towards our late 20s, we understand like PTO is precious, like your vacation days, precious. Sometimes you don't even - like you earn them like one at a time, you know, over many months and like, there's never enough to go around. In America, again, we have terrible vacation policies in general, especially mid-sized companies, I think as compared to like some of the bigger, more nationwide global brands, I think are tending to be a little bit more generous now that there's a lot of remote work and you can honestly, like, go work for a European company and get a way better policy, I think that's starting to change. But five years ago it was even worse than it is now. And now it's not even that great. So we have a scarcity mentality in America, I think, about our vacation because there's not much of it and we're going to hold on to it. So that's very generous that they did that for her. And that brings up another important point, which is that, like, Dad and Mom were your main caregivers, and they still had to juggle the joys of a job with you as well. So, like, Dad stayed on full-time and just took occasional PTO days to be there for, like, major appointments. And Mom, I feel like the first time you got sick, she made it work. And like, I think she was part-time maybe already, but cut her hours and juggled stuff, and then the second time, I think she took like a complete leave of absence when you were doing a transplant so she could be with you. But regardless, like, she held down that same job through this entire time, however they ended up slicing it. That's complicated when you are in a job you have ongoing responsibilities, and you’ve got to lean on your co-workers to make up for your absence. That's hard. 

Ella 22:35

She’s a social worker, right? She works with people. Like, I think it's different from a job where you can just, like, clock in, do your thing, clock out, you peace out, like, when you're not there. It's not that big of a deal. But like with a job like that, where you're working with people and like providing services to them and making sure they have the resources they need, like that's a really big deal. And that's a lot to keep track of on top of doing a lot at home. 

Kayla 23:02

Yeah, thanks for saying that. I think in general, helping professions like nursing, teaching, social work, a lot of what historically we might have called the feminine professions, these helping professions, like, they take a lot out of you from a compassion standpoint and a social standpoint. And I'm not saying it's easy for anyone who goes and like, is an architect or something. But yes, when you're already maxed out with your family member going through cancer, it's very difficult to be in a helping profession where you turn around and give, give, give, give, give. And of course you don't tell the patient or the client or your students, right, what you're going through. I mean, maybe if you're a teacher and the kids are old enough to understand, you would. But in most professional settings, like as a nurse or social worker, yeah, you tell your co-workers and try to get support there, but it's not appropriate to tell each client and each patient like, “you’ve got to give me a grace because I'm going through this thing.” It's like they're going to treat you however they want to treat you, because they're also going through some hard stuff or they wouldn't be in front of you. 

Ella 24:12

Totally.

Kayla 24:13

 It's tricky, all of this job stuff and I mean money, right? It comes down to money. We wouldn't have to endure this kind of stuff most of the time if we didn't need the income.

 

Ella 24:26

 Well, money and the health insurance piece, right. Like if Dad had just, I don't know, walked away from his job, taken a leave, et cetera, like, I don't really know what that would have done to the health insurance, but obviously there was a lot riding on that too, because without it, goodness knows.

Kayla 24:46

 Well, think you bring up an important point because again, throwing America under the bus. Here our health insurance is - a majority of people have it tied to their job. People stay in dead-end jobs they hate because they have good benefits and they don't see another way out. And for people like your husband, he was between his parents’ insurance and his new job’s insurance when he first got diagnosed, which we've touched on in the American health care episode. And for a lot of the population, they find themselves in a really weird spot. You can now stay on your parents’ insurance until you're 26, thanks to the Affordable Care Act. But I'm never - I can never remember. Is it when you turn 26 or you get your whole year of being 26? 

 

Ella 25:32

No, I think it's when you turn 26.

Kayla 25:34

 Like it's done when you turn 26.

Ella 25:36

 That's my understanding, yeah.

 

Kayla 25:37

 We'll link to the real answer, but that doesn't necessarily mean you're always on your parents’ insurance. I remember there was a time when we were younger during the recession in like, ‘08, that Dad's insurance just quit doing - excuse me, dad's company quit doing family insurance. They would only insure their employees. And so you and me and Mom had to get on, like, Medicaid or whatever, because there was no other way for us to have insurance. And like at the time, I was in middle school and like, I was aware but not aware enough, you know, which is good. But now I look back and I'm like, that's terrifying. Like, there are all kinds of situations in the US where you fall through the cracks. And so I can only imagine that some people find themselves in sticky situations if they are working and get cancer themselves, or have to care full time for somebody with cancer, and they're also the breadwinner. Like there are just so many situations that are unfortunate with that. 

Ella 26:42

And I think another point that I want to draw out to is the fact that - just, cancer is never linear, right, and the timeline is always just changing. And I think we're going to talk about this more next week, like the different things that you experience that kind of throw off the timeline. But the reason I say this is like, you know, you could have something set up with your employer that, okay, I'm going to have these two months off because my child is going to have their transplant. And then for me, it was like my entire transplant got pushed back like two months. So then even if, you know, accommodations had been made at Mom's work or whatever, it is constantly changing. So I think what you were saying earlier about, like, having those reminders and those ongoing conversations with your employer, your boss, HR, whoever, like, unfortunately, it's going to have to be an ongoing conversation because cancer is always changing, and even a day when you think you're going to go in for treatment, like, maybe your counts aren't good enough so you won't be able to get chemo and then boom, the whole schedule is thrown off. So I think that's just an important reminder too, that - that open dialogue I think is really important.

 

 Kayla 27:57

Yeah. That's key. I've talked to various different survivors and some of them will be like, yeah, I took every Friday off and did chemo. And it's like, I just can't even fathom that working out. Like, if it does for some people, that's awesome. But like you said, like, so many times due to your blood counts or due to even the hospital needs like, oh, we're full, we can't fit you in on this day, or your body didn't respond how we thought, something showed up on your scan. Months and even years of your life can get shifted around and pushed back. And the day to day schedule, I mean, ugh, you just would know when you would go to chemo, that's my whole day. Like, okay, technically you're supposed to be there at X time for three hours, but we all know it's going to be basically your entire day. Unfortunately, because cancer is so common, 1 in 3 Americans will have it before they die. I like to think that people have some concept of how nebulous it is and how different it is, but not everyone does. And that's part of why we're doing this podcast. Some of it's educational, like, you might have to explain and advocate for yourself that it's not linear and plans change.

Ella 29:19

 Well, that's a good lead in to next week. We'll be talking about hiccups along the way in the treatment journey, and going into more details on how plans do change and how cancer is never linear. So thanks for hanging with us. We appreciate you listening along and we'll catch you next time.

Kayla Crum
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Episode 24: Hiccups Along the Way
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Episode 22: College and Cancer