Episode 42: Ongoing Side Effects

Written By Kayla Crum

Everyone knows that many cancer patients go bald and spend a lot of time throwing up. Fewer people understand that there are many physical side effects that stay with cancer survivors for years, decades, or their entire lives. On today’s show, we discuss the side effects that just don’t leave.

SHOW NOTES

Sources and Further Reading:

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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Ella 0:42

Welcome back to the My Sister's Cancer podcast. This is your co-host Ella here as always with my sister Kayla. We just wanted to start this episode by reminding you that you can find us on the web if you visit mysisterscancer.co. We have a wide variety of different things available to you there, including show notes and a variety of different essays and poetry that Kayla has written. So make sure to visit us there. You can also find us on Instagram @mysisterscancer, and you can send us an email. And the email address is hello@mysisterscancer.co. We just wanted to remind you of those things because we are a larger community than just here in the podcasting world, and we would love to hear from you in any of those spaces as we journey through the survivorship season together. So in today's episode, we are going to be unpacking the struggle with ongoing side effects, as we have touched on briefly in the past. Survivorship comes with its own host of difficult things. And although we so desperately wanted to just get on with our lives, whatever that meant, that's just not the reality. And if you have been through a cancer journey and you are now a survivor, there are ongoing things that you are going to be dealing with, most likely for the rest of your life. And so we're just going to hold space for that today and kind of talk through a few examples from my experience in a way that might be helpful or informative. So, Kayla, when I talk about ongoing side effects. We're kind of talking in a few different ways. Did you want to guide us through maybe what some examples of those ongoing side effects could be? 


Kayla 2:44

As a former cancer nurse, too, I think I was a little more prepared for this than maybe the average cancer family when you were told what might happen for you. So from an educational standpoint, for people who don't know, we've talked in depth in our treatment and diagnosis seasons about how chemotherapy works, how radiation works, and the effects those can have on your body. We focused primarily on the short term effects and explaining why chemo makes people lose their hair and throw up things like that. So you can go back and we'll link in the show notes to a couple relevant episodes. But something we didn't go in-depth on before is the ways that things like chemo, radiation, and transplants can have long term effects on different systems and organs in your body if they like, chemo can weaken your heart. And of course, there's like hundreds of different kinds of chemo and different ways they affect your body. So everyone's experience is a little different. But really, if you name any part of your body, it can be affected in the long term by cancer. So bones, heart, reproductive organs, your brain - like there are just endless ways that different treatments can have lingering effects or latent effects. Latent meaning you might not know about it for years after your treatment, and then something can crop up 10 or 20 years down the road and they'll be like, “Oh, the chemo did this to your organ, and now we're just figuring it out.” I actually remember touching on this for the first time in a college class. I took like a cancer seminar class, and this was my first exposure at that time to the idea of like, latent and long term side effects. And that really surprised me because everybody knows about, like, the baldness and the puking. But I don't think we all realize the long term effects. So this is a very personal topic. It's a very individualized topic. I don't want anything we say today to be prescriptive, or that everyone you know with cancer will have a weak heart. Like, that's not what I'm saying. And we're going to kind of go through what Ella is still dealing with and may have in her future just to kind of give you an example of what these long term effects can look like in practice. I also wanted to say, we've talked before about the idea of chemotherapy and other treatments being individualized to the person, because cancer is really an over-manifestation of your unique cells. And the risk-benefit ratio is always unique to the individual. So someone in their 50s is going to make a different choice about treatment from someone in their 80s and someone in their 20s. And so I think we like to think, “Oh, I have strep throat. I go get an antibiotic, I'm cured. It's easy.” That's for sure not how cancer works, because we're always weighing: okay, here's an 18 year old with X diagnosis. We hopefully want to cure the cancer and give them 5 or 6 more decades of life. But we also want them to have enough functional organs to enjoy those 5 or 6 decades of life. And so that decision about treatment is going to be different than someone in their 50s or 80s, right? And so it's hard to thread that needle of eradicating the cancer while preserving the body. And as you age and due to various personal and life factors, doctors and their patients together might make different kind of cost analysis or like risk-benefit ratios about what treatment to pursue. So, I think that the tippy top one that comes to my mind for you is your foot numbness that you experienced, really for a couple of years, I would say, after transplant and I guess still to this day. But do you want to talk a little bit about your feet for everybody? 


Ella 7:07

Definitely. One thing I do want to say too, just like what you were talking about made me think about how - and I know we've said it on a previous episode, but it’s just… it's so counterintuitive, right, that these drugs that we're using to get rid of the cancer, it's like, yeah, you have to weigh, okay. What are they going to do in the long term, or like, how are they going to harm you potentially down the road? It just feels so… it's a hard choice to have to make. So I don't know; I just wanted to put that in there. But yes, my feet. This actually didn't crop up until I want to say toward the end of 2018. And I think we've kind of talked a little bit about this maybe on the treatment side effects episode, but this was actually from a maintenance chemo drug that I was on. So it was actually an immunotherapy that was just being used to kind of keep any potential cancer cells at bay post-transplant. And I was on this for quite some time, I want to say maybe almost a year of infusions. And it was probably about… I don't know if it was about halfway into it, it doesn't really matter. But I just started really experiencing these frustrating symptoms with my feet. I remember so clearly, like, just randomly falling like, and I love high heels, right? I'd be wearing like a pair of high heels or heeled booties or something and just like biff it. And it was so disorienting at first because I was like, what? Like, I don't think I understood or acknowledge that, like, my feet were the problem. Like, I didn't - I wasn't in my head like, “Oh, my feet are numb. Like I can't feel my feet.”

 

Kayla 9:01

Because it was gradual.

 

Ella 9:03

 Yeah. And then as time went on, like it kind of changed a little bit; like it was… what I was experiencing was peripheral neuropathy, and I had had that like in my hands and fingers a lot, but I really hadn't experienced it ever in my feet. And I think it first made its ugly appearance when it was just like a total loss of feeling. And I think that's what made me trip, was I just like had no control and like it was just an ultimate weakness, too. But yeah, that was something that was really difficult to know how to navigate because then, even after I expressed it to my doctors… Again, going back to that like risk-benefit analysis, they really wanted to keep me on this drug because it was doing its job, but it was so frustrating because it was doing this to my feet, really. And, you know, you read the million side effects that this drug can cause. And that was one of them for a very small amount of the population. But yeah, it was really a challenge. And it affected me, like you said, for years. And still to this day, I mean, my feet are not 100% what they were. And I think one thing that made it especially difficult was that I was a dancer. Like I grew up using my feet in ways that most people don't. Like I had incredibly strong feet and toes and like, I don't know, ability in my feet. That sounds so weird to say, but like that made it I think that much harder when I literally couldn't walk well.


Kayla 10:38

Yeah, I wrote a poem called “Frozen Feet” about that, which I'll link to in the show notes. It's a bit long to read for you on the podcast, but it touches on the ballet aspect of it. We primarily danced ballet together really from age four till we graduated high school, and then we did have a little bit of a chance in college to dance recreationally together before your transplant. But yeah, of course it would have been terrible had you not been a dancer, but it just felt like an insult to injury or whatever that saying is; like, okay, now she has to give this up too? Like, you're taking this too. And my clear memory of even finding out that you were struggling - and I think maybe you were still figuring it out, too - was kind of like having a night out with some cousins of ours. And we were like, dressed cute and whatever and had high heels on. And being dancers like, we were pretty good at wearing high heels. Like, this wasn't a problem for us in normal life. And you like, yeah, like you said, you biffed it and tripped and like, I remember, like, kind of linking arms with you that whole night to like, kind of get you through. And then later I saw you had listed your heels for sale, like particularly that pair and a couple others that were higher, you know, and it just broke my heart as I just like realized like, okay, something else taken away from her that they didn't tell you from the beginning. Right? Like you said, there's a million things that can happen to you as a side effect. So, sure, they might have rattled it off, or it might have been in an information packet, but no one could predict how bad it would be for you and what that would look like. And yeah, so that was a wake-up call for me just seeing it in action. I was like, ugh, and then I know you had a pretty bad fall at school, like on the stairs at college. I mean, and then I think one thing we've talked about before is that you were in a wheelchair for most of our wish trip to the Bahamas. So we were very blessed to be able to go on a trip to the Bahamas because Ella had a life-threatening illness. And there's an organization in Michigan that sends 18- to 21-year-olds because Make-A-Wish actually ends at age 18. I think we've covered this in a previous episode. I'll link back to that. But yeah, she pretty much had to be in the Bahamas in a wheelchair because her feet were so bad at that time, and when we booked everything for the trip, I don't think we had realized, right? Like it progressively got worse. And so by the time we went, it was really difficult on you. 

 

Ella 13:27

Yup. And as you were talking, I was thinking too, like one of the hard things about these lingering side effects is ultimately it's just going to lead to more appointments and more things to manage. Right. Like I remember so clearly, I had to then pursue physical therapy for my feet for like a good chunk of time. I tried all kinds of things. I did like this anodyne light therapy; like I was trying all the things because I was like, I need my feet to function. Right. And I'm really grateful to say that they've gotten worlds better than they were a few years ago. But again, there's still things that I'm like, oh, that's not 100%.


Kayla 14:08

 And I remember, too, you had a handicapped parking pass for a while, and I don't think - that might have even just originally been because of weakness and fatigue after cancer, but it ended up being crucial for your feet. But this goes back to something we've talked about before, too, is the invisible nature of some side effects. Like, here's this, like, young, thin - due to cancer, but nobody knows that - stereotypical healthy young woman. And she's like using this handicap parking pass and like, you know, like there's like weird layers there of things, and you just never judge the person, you know, using that space because you don't know what their physical experience is. And it never got to the point where you needed like a cane or anything. I mean, maybe that would have helped. You kind of either were like going short distances walking, or you would just be like, okay, I need the wheelchair for like a longer stretch. But I'm very - I mean, I'm proud of you for trying all the things and doing physical therapy. I think that plus, honestly, just time, like, they were like, “It might wear off over time. We don't really know. Time will tell.” It's like, cool. Uh, but it has worn off. And that's probably… partly it's worn off as the medicine left your system, and it's partly, right, like the work you put in and nobody will ever know, like what combination of those did it.


Ella 15:38

 And I think my age, too; they were saying to me how like when you're older your nerves just don't, um, regenerate or whatever. So I know a lot of older adults really struggle with peripheral neuropathy, even if they're not cancer survivors. Diabetics too. It's tricky.


Kayla 16:00

 Yeah. And I think now you would never guess looking at you walking that anything is wrong. Like, I can tell as your sister that you walk differently than you did growing up, but I don't think the average person would see that. But for a while, I know you felt pretty self-conscious about how you walked. 

 

 Ella 16:16

 Super self-conscious.


Kayla 16:18

 Yeah. Yeah. And it's limited the kind of shoes, not just high heels, but even, like the type of support and structure you need for your shoes and all these things. So that's just one example of like a very specific problem that affected Ella's entire life, that if you hear she had a blood cancer like Hodgkin's lymphoma, you would never be like, therefore, she couldn't walk for a while. Right. And so it's just like the understanding that these things cascade on each other, and it's usually a result of what we did to get rid of the cancer that actually also hurts the rest of our bodies. So that leads me to another one that hopefully will not affect you. But I remember being at your - I think it was your first radiation appointment or something like that. And them just talking about the risk of future breast cancer because you were getting radiation to your chest where your lymph nodes were with your Hodgkin's lymphoma. And so obviously we've talked about radiation before. You have little tiny tattoos on your body that allowed their beams of radiation to be super precise, but due to where your lymph node cancer was, you did increase your risk of breast cancer by getting that treatment. So again, it's like there's just that thought out there. Like hopefully when we're in our 40’s it's not breast cancer time. Like does that live rent-free in your head? Or how does that work for you?


Ella 17:49

 I try not to dwell on that or let that consume my thoughts, but it's definitely there. I mean, it's just hard because yeah, I'm at higher risk for so many things now. So like, I mean even, right, like skin cancer, like because of the radiation and just cancer treatment in general. Like my skin is more sensitive to the sun. So it's like all these things that it's like I could really get caught up on. Yeah, the what ifs, but I really try to not stay there.

 

 Kayla 18:26

 I think that's going to be a theme of this whole season is like, how as a survivor to hold space for and acknowledge the weight that you now carry of what might happen and what did happen, and then also like choosing to not live there and like, have it completely define your life. And it's hard to strike that balance, especially when you don't want to sweep your experience and your fears under the rug, because that's not a healthy reaction. But you also don't want to just live in constant anxiety about what could happen. We’ll have much more to say on that, I'm sure, in future episodes. You also recently got to stop heart medication, right? I mean, for years your heart needed some extra help because of how the chemotherapy had affected it.

 

Ella 19:20

 Yeah. So when they discovered my Hodgkin's lymphoma, and again, I think this was mentioned on a previous episode, but if you haven't listened to all of them, I'll fill you in. Basically, they just discovered a lot of fluid around my heart, like right at the beginning. And that was very alarming to them. So much so that the nurse practitioner was like, “I'm trying not to freak out, but I've never seen this and I've been doing this for 40 years.” Thanks. Okay. Thanks for sharing. But yes, initially there was the fluid around the heart which like impacted my chemo and just a lot of other things. But then yes, the chemo itself too had a negative effect on my heart. So I was getting like regular echocardiograms. And I was on two different heart medications actually for quite a few years. And then just now, in the last, I think, six months, I had a routine echo. I think I still get them like once every 1 or 2 years. And I'm like completely within normal functioning, like my heart is within the normal range or whatever. Everything looks great. And I was having some adverse side effects to the meds because I'd been on them for so long that like, my blood pressure was doing some weird things and I already run very low, so it was like not serving me super well. So they tried, just like, taking me off the heart meds and I'm doing really well off of them. So that's a super exciting thing because when they had put me on them originally, they had said that was something that I could have been on for the rest of my life. So I’ll take that.


Kayla 21:06

 Your blood pressure kind of cracks me up just from a nursing standpoint, because I've been with you when a nurse or M.A. will take your vital signs and you run like 80/50, which is insane. And that's just like your normal functioning, basically. And they'll be like, “Oh my gosh, are you okay? Do you need to lie down?” And you have to be like, “No, this is just normal for me” and really convince them of that. But yeah, as a nurse, I would be like, I gotta retake that. That's not right, you know? And it's just funny, like, what can be normal for one person is not necessarily normal for another. We did a whole episode on mental health called “The Winter Blues” about a month or so ago that we can link to. That is a lasting side effect that is maybe not as physical as some of the ones we've been discussing, but is huge. And we won't get too deep on that today because a lot of our future episodes in this survivorship season are going to talk about the more emotional side of struggling with survivorship or loss if you are a surviving loved one of someone who passed with cancer. So just know that, you know, we do see that as an ongoing side effect. And some people, you know, will always struggle with anxiety or depression or other mental health issues as a result of their cancer experience and need medication for that for the rest of their lives. And, you know, there's no shame in that. But, just wanted to acknowledge that on this episode, even though we will dive deeper in that in episodes to come. I also want to acknowledge reproductive issues. So we're not going to go in-depth on that today, because next week, our entire episode is going to focus on reproductive health for cancer patients and survivors and fertility, menopause, things like that. But that is a huge, huge side effect that affects cancer patients for their lives, their entire lives. And like I said, next week we'll go in-depth on that. So before we sign off today, I did just want to reference an essay I wrote called “You, the Survivor,” and I will post that on our website and link to it in the show notes. I think previously I've only sent it out to our newsletter subscribers, which you can certainly join, but it's a whole essay about all the things we just talked about. And I phrase it “you, the survivor,” because the whole essay is sort of written in the… I guess that would be the second person. Like, “you watch the likes and comments roll in,” you know, “you struggle to feel your feet.” And I'm just kind of trying to, like, stretch the reader's experience or empathy of that situation. I think sometimes when we write from that perspective, it can kind of just jar loose something in your mind that wouldn't connect as much just hearing someone talk about their own story. So I’ll link to that essay in the show notes, and I encourage you to give it a read to maybe connect the dots between the emotional and physical experiences that we've been discussing today. Next week, like I said, we'll cover infertility and other reproductive issues for cancer survivors. Obviously, if that is a difficult topic for you, feel free to skip that one. But if you would like to learn more or want to feel seen and empathized with in that experience, that is what we are always striving to do. So until next time, we hope you have the best week available to you.

Kayla Crum
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Episode 43: Cancer and Reproductive Health
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