Episode 4: Great Aunt Hilda and the Variety of Cancer
The sisters get a little more scientific and unpack why cancer is physically different for everyone, and therefore emotionally and mentally different for everyone.
SHOW NOTES
Sources:
Cancer.org Stages of Hodgkins lymphoma
Calling People In, Not Out - Loretta J. Ross
TRANSCRIPT
Kayla 0:08
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 0:19
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 0:27
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 0:41
Welcome back to the My Sister's Cancer podcast. I'm your co-host, Kayla Crum, here with my sister Ella Beckett. Last week, if you were with us, you heard us discuss the response to Ella's cancer diagnosis, what to say, what not to say, saying something's better than avoiding it, all of that good stuff and what our experience was with that. This week, we're going to get a little more technical and scientific and delve into what we like to call great Aunt Hilda and the variety of cancer. So if the Hilda part is confusing, we'll get there, but we just wanted to zoom out a little bit from our personal experience and give what I'm going to call a mini deep dive into the science of cancer to help explain why everyone's cancer experience is completely unique to them and shouldn't necessarily be compared to others. So I'm going to start off… I'm trained as a nurse, as you might recall, and just give a little definition of what cancer is. I think we all think we know, but if we had to actually write it out, we might be stumped. So cancer is when there's a faulty stretch of DNA in some of your cells, and that little chain of code, if you want to think of it like that, starts telling the cell to reproduce uncontrollably, meaning more and more and more of that cell is produced over and over and over until the space it's in is filled up. So that's why we think of tumors sometimes when we think cancer. Of course, it's much broader than that; skin cancer, you can think of how moles grow uncontrollably; blood cancers are a little different because, of course, it's not located in just one area of your body, but the faulty cells do spread all throughout your blood, and can eventually lead to tumors in other places. So the main takeaway that I want to emphasize here is that it's one little cell that got replicated, which is normal, happens all the time in your body everyday - something went haywire, the body didn't recognize that it went wrong and it was able to take control and multiply. Multiply. So at its core, cancer is you. Like, it's your DNA that has started to take over yourself. It's sort of like a kids’ movie where somebody drinks the potion and their eyes turn, like, red and then it's like they turn into this other version of themselves. It's almost like that happened to one of your cancer cells and they're starting to take over the rest of your body. So I'm going to let Ella talk a little bit about the different types of cancers that might come to mind as normal and also some of the rarer ones and just kind of highlight why this is such a broad discussion.
Ella 03:30
Yeah, absolutely. So I think a lot of people, when they hear cancer, there's definitely a few different types of cancer that come immediately to mind. I think it also depends on the population that we're talking about. There's cancers that are more prevalent specifically for kids. So I think a lot of the main childhood cancers that you think of are typically leukemia, different variations of leukemia, sometimes brain cancer, and then typically a lot of times for young adults, you see a lot of lymphomas. I had Hodgkin's lymphoma. There's also Non-Hodgkin's lymphoma. There's just a wide variety. I mean, anything from skin cancer to lung cancer. But then there's also the cancers that you really don't hear a lot about or cancers that are incredibly hard to treat. I think of the sarcomas - those are bone cancers, typically, and they're a lot harder to get under control, so to speak. Harder to treat. There's also, you know, ovarian cancer and pancreatic cancer, a lot of silent cancers that can be there for years without you realizing it. So, yes, there are so many different kinds of cancers, and even, you know, two different people who have the same diagnosis of the same kind of cancer are going to have a completely different experience with that cancer. And I think it goes back to what you were saying, Kayla, because it's in your DNA. I mean, you can probably speak more to the science of this, but I have to imagine, then, it's unique to each person. Even the same kinds of cancers are unique to each person because it's your cells and it's your DNA that's doing the reproducing. So it's unique to you. Is that would you say, accurate?
Kayla 06:00
Yeah, you have that totally right. And that's why cancer is notoriously hard to treat. We have chemotherapy, radiation, transplants, but a lot of it hasn't advanced over the last quarter, half a century, in the same way a lot of other medicine has. And I think that's primarily because of the unique nature of the disease. All of us have mutating cells all the time, and our body identifies that and breaks them down. So cancer is something that slips through the cracks. Your body doesn't realize that something went wrong and lets it continue to manifest. But because it is your own DNA, and it could be a variety of places - you probably remember from high school science, like the terms genes and chromosome and the different little arms of those little squiggly lines you would see on the PowerPoint or overhead projector. I'm really aging myself here. Yeah, it could be anywhere in there. So that's why it's so hard to treat. And we are working on targeted therapies. I say “we” like I'm part of the research, that's not accurate. But we, as in the scientific community, is trying to get more targeted therapies. But that's unfortunately not mainstream yet. So one of the ways that we try to put language around what exactly people have going on is by staging. I'm sure we've all heard, like, stage four cancer, and we kind of know that's supposed to be something bad, but it's usually sort of unclear to people who haven't gone through it themselves, like, what all these stages mean. Um, how many are there? Is one bad, is four bad? All that kind of stuff. So Ella's going to shed some light on what her stage was, and then I'll give a little more discussion on how that might play out in other cancers as well.
Ella 7:55
Yeah. So I had Stage Two Hodgkin's lymphoma, and we learned very quickly what that meant. Stages typically progress from one to four, and I believe they divide it by sections in your body. So if the cancer has progressed further down your body, then it would be a later stage of the cancer. So, for example, if the cancer were only in your upper region, in your neck, then I believe it would be likely a stage one. And then as it goes, it progresses in stage. So I was stage two, and I had it not only in my neck, it was also in my chest, and then, I believe, in some armpit area. Can you provide some clarity, Kayla, if I'm saying this correctly?
Kayla 08:55
Yeah, I think you're definitely speaking from the Hodgkin's lymphoma perspective, obviously, because that's what you've gone through. My understanding is that you were stage two because a stage one, it would have only been in one lymph node area. Yours was in more than one lymph node pocket. We have little areas - you might have all felt like your swollen lymph nodes in your neck and in your armpits at various times. Yours were in multiple, which made it a stage two. But it didn't go below the diaphragm, which is that membrane that separates your lungs from your guts. And so because it hadn't gone below that, it - that would have made it stage three if it kind of crossed that barrier. Now, I will say that's not necessarily how it works with all cancers. I am also most familiar with lymphoma, just because that's your experience. But when you start to think about, like, brain cancers, bone cancers, I mean, some things start in different places in your body, and so each type of cancer has different rules around what makes each stage itself, if that makes sense. So, stage one of a brain tumor or brain cancer is going to have a different definition than stage one of a blood cancer.
Ella 10:17
And I believe they actually call it grade for brain. For brain I think it's grade one, grade two. Yeah.
Kayla 10:22
Yeah see, so, I understand why people get confused. I mean, we've been pretty immersed in the cancer community, and we're confused at points, but hopefully, that gives a little bit of an understanding. You also might sometimes hear, like, stage two A or stage two B. That also can mean a variety of things based on each type of cancer. So, when I was reminding myself of what that means in the terms of lymphoma, my understanding was that A was considered less aggressive, whereas B was considered a more aggressive cancer. Somebody maybe dropped a ton of weight, had night sweats, sort of more progressed symptoms than somebody with an A type of cancer. Honestly, though, a lot of this is just us trying to put a name on the constellation of symptoms and issues people present with, and then that helps guide the best treatment choice for the doctors. But they're making an educated guess. I know that sounds terrible. That's not what we want to hear about the medical community. But most of medicine is that we take what we know, and we make our best guess and take care of it the best we know how. So, all these numbers and letters are meant to do that and guide the treatment, and then they can change as we go through. So one thing I wanted to call out, Ella, is that you were stage two, did your four months of chemo and were declared in remission, but then less than a year later, you relapsed. Which surprised me at the time, because I thought, stage two, it's not four, which everyone talks about, like the worst option. I didn't even realize relapse was really a possibility. If you weren't all the way to four… four felt like you had to be four and then you might relapse. I just had assumed so much about that. And then they just said to us, well, now we consider it an aggressive stage two so now we need to do a transplant. And I just found that so interesting. That didn't make it a four, that it had come back, because in your case, the stages were based on body location, not incidence of relapse, and that can vary cancer to cancer. Did you find that surprising as well? Do you have any memory of that?
Ella 12:34
I don't know if I found it surprising in terms of it being stage two in it coming back. I think obviously it was just very surprising. The relapse in general was just very surprising. And I think some of that is just you're told that Hodgkin's lymphoma is just a very treatable cancer, and that's great news. Um, but they even told me throughout a lot of it, that the odds of relapse were so slim. So I think that's why it was just kind of a slap in the face. And I think I've used that exact phrase on a previous episode, maybe. But no, I don't really remember thinking that specifically about the staging piece of it.
Kayla 13:20
It's probably because I was in nursing school thinking very clinically about it at the time. But that brings me to our next point, which is just the fact that - we've said many times in this short beginning of this episode already, how different cancer is person to person, type of cancer to type of cancer. And even within your own experience, your first experience with lymphoma, your second. I think what point we're trying to make is that, don't assume that something is not so bad or the end of the world just because you hear some scary or maybe not scary numbers and letters. Sometimes people tell you sort of their clinical diagnosis, including the stage and everything, just because they've found that people are going to ask them, well, what stage is it? Or whatever, if they don't say it. And unless you're kind of close to the person and have time and empathy to talk through what that actually means, making assumptive statements about like, well, at least it's only stage two, or oh, my gosh, it's stage four, that's not really constructive. Again, unless you're in a close relationship where you can work through that together. So that brings me to something we heard a lot and that I now catch myself doing. So I really am trying to work on this. It felt like literally everyone, as soon as they hear about cancer, say, oh, my gosh, my great aunt Hilda had cancer and she - fill in the blank - is doing awesome. Suffered but survived. She's such an inspiration. So I just put in Great Aunt Hilda as sort of a placeholder for the inevitable person everyone mentions in their life that has gone through cancer. And I want to be respectful of the fact that this comes from people… I think if I'm assuming good intent, I think we have an innate desire to connect through shared experiences. Unfortunately, one in three Americans gets cancer sometime in their life. So all of us know somebody, even if it's a great aunt you never see who has had cancer. And so our immediate instinct, I think, when we hear especially about someone suffering, is to be like, oh, I get it. I'm there with you too. I more understand the people who are like, oh, so and so had cancer, and now they're great. It doesn't hit great when you're the person going through the suffering. But I get what they're trying to do. They're trying to be like, you can come through this on the other side. I less understand the people that are like, oh, yeah, my aunt had cancer, and now she's dead. Like, thanks for telling me that right now. That one was less common, but I did get that. Ella, I'm sure you experienced this too.
Ella 16:23
Oh, all the time. Yeah. And I think you're right. I think it truly comes from a good place. I think we all want to have that shared connection. But I think something that I've thought about a lot lately is - and this goes for anything that you're going to share with someone, especially if it's something a little bit more vulnerable or intimate, like someone in your life having cancer or you being a survivor, whatever. I think it's always good to kind of pause and ask yourself why you're sharing that piece of information with that person. Because in many ways, you're often centering your own story. If someone just told you that they were diagnosed with cancer and you're bringing up, oh, well, I have an experience with that, or my aunt had that. Why are you bringing that up? Are you bringing that up to offer support? Is that something that's going to be encouraging to that person? Or are you just automatically so focused on your stuff? Does it make sense what I'm saying?
Kayla 17:26
It does. I think that applies to a much broader range of things we say to each other than what we're even talking about right now. Having the self-awareness to question why we're bringing certain things up is a huge asset and sometimes you need the help of therapy and or just learning and living as an adult for several years before you realize, oh, I'm saying this for me, not for the person who's here with me. I find this now, thankfully, we're on the other side. I mean, the cancer journey never really ends, but you've been in remission for over five years. We learned a lot. I mean, heck, that's why we're doing this podcast. Even this in and of itself can be a little bit, you know, might be taken wrong by someone listening at the wrong moment on their path. So I definitely get that. And I'm trying to remind myself not to jump in when I hear, A, of cancer, or B, just somebody going through, like, a medical diagnosis or emergency, not to be like, oh, my gosh, well, when my sister had cancer, blah, blah, blah. I feel that urge in myself, and I do, for me, at least, I want to impart my wisdom to them and save them some of the trouble that we went through. So I get that people have a good urge 90% of the time. I think there's a way, though, to do it without centering yourself. So to start with the empathy, just like we discussed in the response episode. Wow, thank you for sharing that with me. That must be so hard. There's no right words I can say. I'm sorry you're going through that, statements like that. And then something that I have done is give people little care packages. Once they share something with you, just surprise them a week or so later with like… Like, we did this once for someone who was actually admitted to the same hospital you were, so we knew some tips and tricks about that person's actual stay. Like you used a certain kind of, like, lip balm because it's so dry in the hospital, and little things like that. There's ways you can share some of what you've learned in a less direct way that comes off less as finger wagging and less as, you know, making it about you and more as like, hey, here's a little basket of support with a note that says always reach out if you want to talk about this more. Especially if the person never knew you had this experience. You don't need to dump that on them as they just told you their news, but you can maybe later kind of creak the door open and be like, hey, I'm here to talk. Does that resonate?
Ella 20:16
Yeah, definitely. I definitely had people like that who had gone through it before. I think I've mentioned that, too. I had someone make me a really sweet care package because she had been through a really similar experience.
Kayla 20:34
Mmhmm. I found it interesting how many people in our life suddenly said, oh, yeah, I had Hodgkin's lymphoma when I was 20, and I got chemo for a few months, and I've never had to think about it again. There were, I don't know, like, more than two people like that in our life that we had never known, like, adults in our life. Probably, I would say four to five, maybe that just appeared. I thought initially that I would find that really hopeful and that I would see that as, like, a really encouraging thing. But a lot of the time, that - I guess the way that they said it and the way that they kind of presented like, oh, yeah, you'll be fine, it felt very dismissive at the time. It really rubbed me the wrong way. And, yes, on one level, you're like, oh, look, this person has a family. They have a career. They did this and moved on. That's encouraging. And I think that's what they were trying to communicate. But our mom has this thing she says all the time, it's all about approach, and she's not wrong. The way you say something is probably more important than what you're saying. So again, there's a kind way to say, like, hey, I want to share with you that I actually went through that. Not trying to say we have the same experience, but if you ever want to talk, I'm here, and also just see me as an example of somebody who made it out. Like, no, there is hope. That's fine. On the flip side, what you got a lot of was like, hey, I just want to tell you that it's really not a huge deal. I mean, if I remember, I only had to go get chemo like less than 20 times, and I've never had to deal with it again. So hang in there. You just got to power through. Even the upbeat voice. Like, everything about that when you just got the worst news of your entire life just feels so dismissive. So I am so aware of that now, especially now that we're putting our words and opinions out there on the Internet. You're still here. I try, and I'm sure I mess up sometimes, to be careful with my language about, like, some people's sisters don't make it out and that's not something that I can understand firsthand and I'm sure I sometimes say the wrong thing. So it's always so important to at least acknowledge your blind spots, even if you know you're going to mess it up a little bit. Do you have any advice, Ella, for you being the survivor, have you been able to turn around now and kind of learn through trial and error how to interact with people coming up behind you through a similar journey? Were there any faux pas or good experiences you could speak to?
Ella 23:29
I think it's really hard. I really resonated a lot with what you were saying earlier about still kind of feeling that urge to impart the wisdom that you gained from going through this. I mean, I have that so much in my life now. It's a huge gift to be five years out because there's so many people who know me now that didn't even know me then and just wouldn't necessarily even know that part of my story without me telling them, which is equal parts refreshing and exciting, but also can be really challenging because it's always trying to find that line of how much do I share? How much do I tell people? But in terms of people who have gotten diagnosed since I have and trying to find that line of yeah, how do you connect with people walking through something similarly, I've been a part of a young adult support group for probably like six years now. I think I went a year or so after I was diagnosed, and I've met a lot of people through that who have had really similar journeys to me, but also really different. And I think that's been really good for me, to see the variety of cancer firsthand and to navigate what to say, what not to say in those experiences. Right. It's really hard when you're in a room filled with people with these really complex diagnoses and at the same time, someone is having a really exciting day because they just got great news that they're in remission, while at the same time, your other friend on the other side of room is like, their treatment is not going well. They're not sure if there's other options. And so I think I just really learned through having a lot of different friends with cancer, who have had cancer in the past, to just hold space for everybody's journey and to… what you were saying, to not assume how they feel or… right? Like the whole stage four versus stage two. Do not “at least it's only stage two” to anyone. I think that's just a huge thing that I want to emphasize, is that everybody's experience is so different.
Kayla 26:16
I’m sure that there will be listeners who resonate with what we say on this podcast and listeners who think we have the total wrong approach. Because, like you just said, everyone feels differently about what they're going through. I sometimes feel like on this podcast we've been saying a lot of what not to say, kind of like what not to wear, and that is part of what we're trying to do. But I really want the root of this to be education. I've heard the phrase, instead of calling somebody “out” when they make a mistake, you call them “in.” I'll have to look up who said that and put it in the show notes. I believe it was in regards to racial reconciliation stuff, but that's just been a helpful reframe for me about when somebody messes up or hurts you with something they say in particular, instead of calling them out - we think of that as like a pointing and being like, hey, you stink. You just said this. Call someone in. Help them understand, hey, that didn't really rub me the right way. And here's why. And my hope is that that's the tone of this podcast, is that we're calling people in to say, hey, we've seen a lot of misinformation about cancer, a lot of assumptions about cancer as we've walked this road, and we want to share our journey to A help other people feel seen and laugh a little bit about the crazy stuff people say to you and B, educate people who haven't been super close to someone with cancer and maybe always feel like they never quite know what to say, and have felt like they said the wrong thing, but aren't really sure why. That type of stuff. So I hope that people feel called in as they listen with us. Speaking of that racial reconciliation, though, one thing I want to touch on before we go is the disparities that exist in cancer treatment. I'm sure it's not a news flash to anyone that in the scientific community, most studies for decades were done on white, straight men. So any group outside of that - women, different racial and ethnic minorities, even different religions that practice different things that affect their bodies, people of different gender and sexual orientations, haven't been studied in the same way that straight white men have. And so sometimes our treatments are not as applicable to these groups. And you see this also when you look at transplants. You guys might have heard of something called, like, Be the Match, where you can register to be a bone marrow donor for a stranger if you guys happen to match. We have such a need for racially and ethnically diverse donors because, again, we're rooted, in the scientific community, unfairly in whiteness. So that is a piece as we talk about the variety of cancer that I want to address here. So I just wanted to call that out and say that next week, we're going to talk a little bit more about that. It's Fourth of July next week and so we thought we would do an episode on the American healthcare system. We are in the United States of America. I can't remember if we specifically said that before, but that's a very specific place in the world, when you compare our healthcare to healthcare all over the world, the UK, China, Taiwan, all over. So we're going to kind of, again, stay on this educational theme. Next week, again, we will share personal experience within the American healthcare system. Me being on the nursing side of that and my sister on the patient side. And then also a little bit zooming out on where American healthcare gets some things right, where it has some struggles, especially for the cancer community and what happens to people in other countries. So if you're listening to this in real time, we'd love to have your questions. You could go over to @mysisterscancer on Instagram and shoot some questions to us in direct messages or a comment on our post for this episode. And we can try to cover those because I think the healthcare system is scary and overwhelming when you first enter it, especially if you've been on like once a year doctor visit, always healthy kind of person. And so we thought next week would be a good week to talk about that. Thanks for listening and we hope you have a wonderful week.