Episode 24: Hiccups Along the Way

Written By Kayla Crum

Chemo regimens, radiation schedules, surgery dates - sounds like cancer is full of airtight planning, right? Wrong. Cancer is unpredictable and so are our bodies. In today’s episode we discuss the myriad of reasons things can get delayed, rescheduled, or changed altogether during cancer treatment. Controlling your schedule is often not available.

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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 with my sister Ella Beckett. Thank you so much for joining us on the show. We know that some of you are newer listeners after our feature on NPR, and we really appreciate that. We also appreciate those of you who have been listening along since day one. It's been - wow, I mean, we started in June, so we're coming up on six months here soon with weekly shows, and we really appreciate those of you who have been faithful listeners along the way, as that really helps a podcast sustain itself and grow and get new listeners. So on that topic, we did want to encourage you - if you have listened to more than one show and you really found it beneficial or helpful, we'd really love it if you could rate and review the podcast. So most podcasts players like Apple Podcasts or Spotify will have a rate and review option; rate it five stars. Leave a little review. It can even just be like one sentence. And the more ratings and reviews we have for the podcast, the higher it will show up in people's search results if they're searching for a cancer podcast. So we just really want to make sure that our resources and our words are reaching the audience that they could help the most. And rating and reviewing the podcast is one way you can help us do that. So thank you so much for being a listener. And I will toss it over to Ella to introduce what we're going to talk about today.

 

Ella 2:13

 So today we are going to be talking about hiccups along the way as we continue to talk through the treatment season. One thing that we've touched on along the way, but haven't necessarily gone into detail on, is the fact that cancer treatment is often not a linear journey, and that there are several things that can come up that either prevent or prolong treatment… just cause you to pause in many ways. And treatment is always changing. Like we've mentioned before, you know, you might have a treatment plan at the beginning that looks completely different in the middle and even toward the end. We're just going to kind of flesh out what some of my hiccups were along the way, but also talk a little bit more broadly about the ever-changing nature of cancer treatment. 


Kayla 3:08

I think that people often picture cancer as pretty regimented. I think I did even when I was learning about it as a nursing student. They literally call it a chemo regimen. That word kind of has connotations of like, strict schedules and things like that. And so I think if you haven't gone through cancer with a close family member or yourself, you don't have an understanding of the unpredictable nature of the treatment. Obviously, I think people would agree that the disease is unpredictable, but I don't think people realize - I certainly didn't realize how much the timelines can change, like you were just saying. So let's use your unfortunate hiccups to kind of frame different examples of what we mean by that. And the goal of this episode is just to kind of open that door or peek behind the curtain, so to speak, so that if you have a friend or a coworker or a family member going through this, you at least have the understanding that things are going to change. I think especially like in the workplace, like we talked about last week on the joys of a job, if you don't know how unpredictable it is, it might be frustrating when your coworker’s plans are constantly changing. Might be hard to understand why that would be. And the answer is a number of reasons which we'll explore today, most of which are body-related that you can't control, some of which are hospital-related. But I would say the majority are just your body responding and rejecting various things. So we'll unpack that today and just explain why timelines can get shifted around so much. 

 

Ella 4:45

I  just think that one other thing I wanted to pull out of what you just said, that kind of relates back to a much earlier episode that we did - I think one of the things that's so hard about the fact that your plan is always changing is how to communicate that to the people in your life and to the people who are kind of like, following along with your treatment. I just remember so many times, you know, we use the metaphor of like a press secretary, right? And it's not just you having to tell all the people in your life that initial diagnosis and the initial plan, you are constantly having to update people with all of these changes, right? And it's exhausting. It's like, first of all, you're processing those changes and like the change in timeline. Like you were saying at your workplace, you might have to change things up. But then it's like all of these people who care about you and love you and want to know everything that's happening at all times, that's a great thing. But I think it can be really burdensome to - to have to constantly update. Right. And then it's the question of who do you update in what order, what things are worth updating for and mentioning? It's just, it's a lot. And I just remember - at some of the hiccups that we're going to mention, like, it was difficult then for us to know at what point to update the people in our lives.


Kayla 6:15

 Yeah. That ties way back to our episode, the rollout. I think it was episode three, kind of about how you communicate the news of cancer to everyone in your life. And to me, that just reminded me of why it can be difficult to receive or give help in this scenario because like, okay, someone's going to bring you a hot meal to your front door on X day. Well, any number of things could mean you're not home to receive that. Or someone was like, let me come do your laundry and you set up a day and then everything changes. So it's like, it's hard because you often don't know what you're going to need, and you don't know when you're going to need it, so I don't know. I guess in the past we've kind of talked about like, advice would be gift cards, right, for DoorDash, dropping off food and meals that can be frozen or put in the fridge or whatever, or just the willingness to be flexible. So like saying, hey, I'd love to come over and clean your house for you and do your laundry on Friday. If anything changes, no worries. Like we'll find another day. Because it's hard to thread that needle. I think when we just say, “let me know what I can do,” that's overwhelming to the person who's suffering. But then on the flip side, if we're too specific and are like, “I'll be at your house at 5 p.m. with a hot casserole,” like that's maybe too specific. So it's hard because we probably sometimes - listeners probably feel like we're talking out of both sides of our mouth. And it's just unfortunate that that's kind of true. Like, you can't be too generic because then people are just overwhelmed and don't know what to ask for. But if you're going to offer specific help, just know that you're going to have to be flexible because cancer can change at any time. Ella am I remembering right that one of your first hiccups was your heart kind of reacting to chemotherapy? Is this like the first time you had cancer that that happened? 

 

Ella 8:07

 Yeah so it actually wasn't my heart reacting to the chemotherapy. Really it was my heart reacting to the disease being in my body. Like there was a lot of fluid that had built up around my heart before we even started anything. And that's just – I remember so clearly, the nurse practitioner had been practicing for like 40-some years, right? Very experienced, kind of a character. And I remember she like, walked in the room and she was like, okay, I'm trying not to freak out, but like, I have never seen anything like this. And I was like, oh, cool. Great. Okay. Thank you for leading with that. Now what are you going to tell me?


Kayla 8:46

 That's terrifying. 


Ella 8:47

And yeah, she just said that like more than one time. And I was like, awesome. Okay. And then she just explained that, yeah. I mean, my heart must have just been having to work extra hard and was under some stress. And so there was just like a layer of fluid built up. They were trying to determine like how much it was, if it needed to be drained. I mean, it was kind of serious and scary for a minute there. And this was even before we had started any sort of treatment. I think I was scheduled to get my first port soon after this, but because of the fluid built up around my heart they were not able to give me the port when they planned to. So that hiccup led to me having to do a lot of my first rounds of chemo intravenously just through my arm, which A) is more painful, and B) yeah, it's just kind of…


Kayla 9:43

 Slower.


Ella 9:46

Yes, slower and uh - 


Kayla 9:47

Just not ideal.


Ella 9:48

Just less convenient. Yeah. And then, you know, the veins start just not working as well because they're just being overwhelmed by all of this poison essentially. Because remember then there were multiple times where they couldn't find a good vein. So then it's like I knew exactly which vein, you know, was the good, like, juicy one. So all that to say, yeah, that first hiccup was that they couldn't place the port as they planned.


Kayla 10:17

 And is that why you had your first round inpatient and am I remembering that correctly, like, were they trying to monitor your heart more closely while they gave you that chemo? Because I feel like you got your very first chemo inpatient.

 

Ella 10:30

 I did. Yeah. I don't remember if that was the reason. I think honestly, sometimes that's just like standard, that because it's your first round of chemo ever, like they don't really know how your body is going to react. So I want to say that like that might just be standard practice. But again I don't know.

 

Kayla 10:49

Right, who knows.


Ella 10:50

I don't know. 


Kayla 10:52

It's overwhelming to like, manage all those details and remember what caused what. And why did we do this this way. And you're like, I don't know. Well, eventually you did get a port and I can't remember if it was your first time you had cancer or when you relapsed. But I distinctly remember standing in the bathroom at Mom and Dad's house with you, and you were like, does this look funny to you? Like, do you see all my veins sticking out a lot on my chest? Like, I feel like it has a clot. And I was kind of like, “I don't know, like why would it have a clot? You're kind of skinny and your veins stick up.” Like, I kind of poo-pooed it, but thankfully you ignored me and brought it up to the team. And you sure did have a blood clot. So you want to talk about that? 

 

Ella 11:36

 Yeah, remember that so clearly too. Like I can still picture it in my head. It was like so bright green. Like the veins were just such a different color than I'd ever seen before and they were so visible. And it was like, on my upper, like, arm and shoulder and like, chest area and I was like, oh, that's so strange. And then it just like, felt a little bit weird. Like, it's hard to describe some of these things in words, you know, like feelings in your body.

 

Kayla 12:03

 Yeah. I wish you could see her. She's like painting on herself where the veins were. 

 

Ella 12:09

I’m motioning. Trying to describe how it felt. Yeah, I don't know. Sometimes it's hard to, like, conceptualize. It wasn't even necessarily pain, but just like this weird feeling in my arm and I was like, yeah, this is different. And I will say, I think I was very in tune with my body and like, good about checking myself over in the mirror kind of before I'd get in the shower. I think part of that is because I found that initial lump, right? That like, led to the first diagnosis. And I think ever since then I've been so diligent about just kind of self monitoring pretty much every day. And yeah, remember, I was just so stunned by that and thankfully brought it up to my team, who also sort of poo-pooed me initially. But then, yeah, they discovered the clot. And then thankfully, like medication was able to take care of that. I think they had to like, blast it. Do you remember what they did to take care of it?


Kayla 13:10

Because I've been a cancer nurse, I have actually done this to other clots in people's ports. It's weird. At least the way that I've done it is it's a frozen medication you have to get up from the hospital pharmacy, like on a timeline, you know, and then you put it into somebody's clot and let it dwell, like, let it  - excuse me. You put it into somebody's port and you have to, like, let it sit there. And it sort of is like a clot-busting medication that is working on your port and its little tubes, and then you draw it back off because you don't want to push it all the way into their body and like, put clot-busting medication through their whole body. So you, like, let it sit in there and then you draw it back off, and then you try to flush the port and see if, like, things are going through. What's interesting to me is that when I've encountered this, I would discover clots in people because we couldn't get stuff through the port. So it's interesting to me that like, your port was still functional and yet there was a clot.


Ella 14:11

 And I think that's why they were like, oh, I doubt it. Like, you know, you just had chemo, like…


Kayla 14:16

They were still pushing meds. So I get from a nursing perspective why they were skeptical. I'm wondering if you maybe just caught it early, like, say you waited two weeks, then they wouldn't have been able to push medication and they would have figured it out if it would have gotten bigger. Yeah, I don't know. These do happen; like a clot sounds really scary and it can be scary. But in ports it is just something that happens occasionally. So I'm not trying to poo-poo it. It was a big deal and I'm so glad you advocated for yourself. But like you said, there was like a simple treatment. Thankfully, it wasn't like you needed a whole new port or anything. 


Ella 14:51

Thankfully. 


Kayla 14:52

So that kind of reminds me too, when I mentioned getting the special frozen clot-busting medication from the hospital pharmacy. I think we talked about this in our chemotherapy episode a little bit, like a month or more ago. But just the routine of going in for chemo. Like, okay, I'm going to give like the bare bones explanation. And then I want you to kind of paint a picture for us. You have an appointment. So you come and get your vitals taken and you get checked in. Then they draw your blood and send it to the lab, and you just, like, wait there while they figure out what your counts are. Because your counts, at least for blood cancers, like what Ella had, lymphoma, leukemia. Your counts will determine if you're even ready to accept more chemo that day. And then once they're like, okay, the counts are in a place where we can give chemo, then they're like, “hey, pharmacy, mix the chemo,” because these drugs are like tens of thousands of dollars and have to be mixed, like, by the special pharmacist at the hospital. And then they send it up to the floor and you start the like, hours-long process. Yeah. Tell us more about that. And like any hiccups you encountered with a chemo day. 

 

Ella 16:03

Oh my gosh. Well I just had no idea. Like obviously. Right. If you're not exposed to that world, like you just don't really know the process or the procedure or whatever, but that's exactly right. I mean, when it was like a chemo day, it was the whole day. Like, even if your appointment was first thing in the morning, 9 a.m. or whatever their first appointment was, like, you were probably going to be there until the clinic closed down around like 4:35, 5:30. Like depending on the drug, I mean, some of them run for hours, like it's a very slow drip. Which I didn't necessarily realize. I don't have like, really specific examples of like, pharmacy mishaps, but I know that happened too, like sometimes the pharmacy just like, didn't have the right drugs or whatever, or like there was just delays, right. Or your blood. Oh, sometimes if they draw your blood, it will coagulate and they can't check your counts. So then they have to draw more blood before they can send that back to the lab. Like it's all those little things that just make it such a whole thing. 


Kayla 17:16

And I remember, I don't know if I was there or if you and Mom just told me about this, but it's kind of weird because you're in a bit of an open concept space in the chemo ward, for lack of a better word. You have curtains between you, but sometimes you can kind of hear everybody's business. And so like, there was a family next to you who, like, were there from far away, and they were here for this special med. And then like, insurance was all of a sudden going to like, not pay for it. And so they couldn't get it. Like I don't - luckily I don't think you ran into that. But I know that’s something people experience, like they coordinate their whole lives to get there, you know, and then it's like, oh, well, insurance is still fighting us. And like, somehow, nobody called them in time to tell them not to come the 4-, 5-, 6-hour drive. Ugh, it's just like there's so many ways that it can go wrong along the path.


Ella 18:06

And that's - I'm really glad you said that because I kind of forgot. Like, that's a huge piece of it too, is you're just like, it's not a private experience, right? And like, I'm the kind of person that I would love to just be like, in a room by myself, do my thing and leave, like for something like this. Like it's very communal because you're just like, yes, like you said, you're out in this open space. One thing that really bothered me, I can remember very clearly is like, I had very specific foods that I would and wouldn't eat during that time, but because it's an open space, you're literally just smelling everybody else's food and like whatever else they're, you know, eating and drinking and doing like -


Kayla 18:51

 Perfume. B.O. 


Ella 18:52

 Yes. Playdough. Like the whole nine yards. Because it's a children's hospital. Right. So - and that was what was really hard too. I appreciate you saying that about, you know, the families that we witnessed; I think that was one piece of it that was super hard, was like -you kind of see it disrupting all these other people's lives too. And then to see, like, these really young kids having to go through everything I was going through, I think was really hard. 


Kayla 19:20

I know they had a couple rooms where they would administer chemo, and that was reserved for if somebody was like, I don't know, contagious with something or like, there were like extenuating circumstances, but like once in a while, if you would like, get one of the private rooms to yourself, that was like the best day, because then you'd be there all day, but you'd have the privacy of like, shutting your door. I'm so curious if any listeners want to write in. I've seen some adult spaces when I worked in cancer, I was on the adult side, but it was inpatient. However, I did get to like, tour our adult outpatient space just as part of my training. And that also was like, not very private. It's like everyone's lined up in this big room. I think that's kind of how it is. And I wonder if that's like a staffing thing, like a certain number of nurses are just monitoring this room full of people so they can quick respond to things. If anyone's had a different experience, I would love to hear about it. If anyone had a positive public experience, I'd love to hear about, like, what made it better for you? Maybe like, how did you cope with being in that big room with a bunch of people? I mean, I think you just like, drew the curtain and would wear headphones sometimes and just try to not smell the smells, which is impossible. I do want to recognize that chemo is different for everybody. So if you had like a non-blood cancer, maybe chemo would have been less unpredictable. Like maybe, I don't know, I would imagine that chemo affects your blood counts regardless of what you're attacking, like what type of cancer. So I would think this is an element that's at least part of everyone's experience, but maybe not as much if it's not a blood cancer. So there might be different types of cancer where this is a little less of an issue with the whole come in, get your blood drawn. Wait wait wait. I do just want to say for people in transplant situations, this is even, you know, turned up to 100 because you had a transplant, but it was your own cells, which always confuses people. She had bone marrow that was untouched by cancer. So bone marrow is where your new blood cells come from. And like, for example, we all have new red blood cells every 90 days. Like, our bones are constantly making us new blood cells. And Ella had the good fortune that her cancer had not progressed into her bone marrow. Therefore, they were able to harvest stem cells from her bone marrow and give her her own clean cells instead of looking for a match; like they would have checked me and our parents probably. And maybe like the Be the Match registry, which we'll link to that. Everyone should sign up for that. It's a great organization, but for people who can't take their own cells, or maybe they need like, a full organ transplant, I can't even imagine how many hiccups along the way there are with that. Like if there's a second whole person involved in their health and their donor situation, like, say you have a donor who agrees to donate, but then they get in a car wreck or they get COVID or they're pregnant and it's just like, then everything's put on hold or, you know, certain organs, you're waiting for someone to die, which is like a weird space to be in. You're obviously going to be so excited. And yet there's like this weird sense of loss and, you know this other family's grieving. And so… those types of situations just ratchet this type of unknown and deviation from the plan up to 100. So just wanted to acknowledge that even though that wasn't your experience. But you did, though, have your transplant delayed. You want to talk about that a little bit?


Ella 23:12

Yeah. If I'm remembering correctly, I think the original plan was that I was going to do X number of rounds of chemo, and then they were trying to bring me to a certain stable-enough point, I guess remission, so to speak, so that I could be transplanted. And the plan was that they wanted to do the transplant in October. That was the hope and the plan. October of 2017. And so I remember, I had like a scan where they were seeing, right, like, is there evidence of disease? Was I responding well to what they had given me? Whatever. And unfortunately, like they hadn't seen enough progress on that, that they were hoping for to stick with the original plan. So then I had to have more chemo, which bumped our timeline out. I think it was like about two months. And I just remember that was really hard because then of course I'm like doing the math, you know? And then that meant a transplant right in the middle of the Christmas season. And like being in the hospital for Christmas and I don't know, I feel like everybody loves Christmas, but like, I love Christmas and like the thought of just having to like, you know, do all of that in the Christmas season, I think was especially challenging.


Kayla 24:39

 Yeah. And we'll do a whole Christmas episode as the holidays approach kind of unpacking that. I'm - you're far from the only person that's had to go through that. And I think talking about that situation is definitely worthwhile and deserves an episode of its own. But yeah, that just goes to show like how disruptive changes and plans are, and there's nothing anyone could do. The doctors were doing their best work. You were doing your best job of showing up and injecting yourself with poison, like whatever they wanted. And it just wasn't enough. You can do everything right and it won't work out. That's just the nature of the human body and cancer in particular. So everything had to get pushed back. When they were getting ready to harvest your stem cells, you had to go in like every day to see if your counts were in the right place or something, even over the weekend. And then all of a sudden they had to do it when it was in the right range. And so it's just like, so unpredictable. 


Ella 25:36

Yeah, it was wild. I remember that too. And like, I think we had to go there. Like, I don't even think we could go to like a local lab. Like, it's like a 45 minute drive on a good, clear, sunny day. And we had to go there like, on like a Saturday morning and a Sunday afternoon and whatever, like drop everything because I mean obviously that's like, important and a huge priority. But yeah, it definitely disrupts your life and any plans that you're trying to make. 


Kayla 26:07

Yeah. Gas cards are always a great gift for someone doing cancer, especially if you know they live, you know, more than ten minutes from the hospital or the treatment center. Because the number of times you just have to go back and forth and back and forth and back and forth is crazy. Or for people who don't have a caregiver - like you had Mom all the time - driving people would be a super great way to help. Like, if you don't have money but you’ve got time. You know, that's a great way to help somebody out but, again, be ready for it to be unpredictable. You kind of have to just dedicate a day, I think, if you're going to drive somebody, but that's part of the gig, unfortunately.


Ella 26:50

 Well, and speaking of all of that back and forth, I remember very clearly there was one time where we had probably been home for like 15 or 20 minutes from a treatment day. And I just, like, laid down on that big chair in Mom and Dad's front living room. And I was like, I felt so feverish, like so hot and cold. And then I, like, started, like, shaking. Like I was very physically shaky and I just, like, knew. So for those of you who don't know, there's like certain standards that if you like, have a fever within a certain time window, and if it's a certain temperature as a cancer patient, like you have to go and get checked out at the emergency room. And I just remember like I was like, no, like we literally just got home, like I think I was like begging them like, can we just please stay home? And we just got back in the car and had to go back to the hospital and get checked out. And then I think I was admitted. They gave me I.V. antibiotics and like fluids and stuff because they think I just had like, an allergic reaction to it or something. But that's really hard too, because you kind of wrap your brain around like a treatment day, right? But then you're like, oh, but then I'll have the next few days to just, like, rest and be at home and like, have all my comforts around me. And then to have to, like, literally go back within the hour and be admitted and not have all those comforts of home around you. Like that's really hard too; unexpected admittance into the hospital, which is very frequent, I think for cancer patients too. 


Kayla 28:42

Yeah, you honestly, that was your only time, I believe, that you had like an emergency visit slash admission due to some sort of reaction. And I think it's quite common and oftentimes happens frequently because people can get infections just because their immune system is suppressed too. So C. diff is like a really nasty infection that causes bowel issues. So that's just a common thing that I saw in adult cancer world. People would get admitted with C. diff that they couldn't control at home, and then they need fluids and stuff, and people are admitted constantly for not directly the cancer, but like the effects of the treatment. And that just of course throws your whole plan off again, like everything will get pushed back; chemo, et cetera. For me, like I remember being texted or something, like “we're going right back to where we came from today. Like Ella's got a fever” or whatever, and that's just indicative of like, how the whole experience felt for me because I - either the first time I was living at college, which was an hour from your house, and a second time living and working at the hospital you were treated at, but again, still an hour from your house. So I just was like, kind of obsessive about having my phone on me all the time because of this unpredictable nature of your body and your disease. I remember - I'm such a rule follower, but I broke the rule that nurses are not supposed to have their phones on them. I was far from the only one breaking the rule, but like normally Kayla is a little rule follower. You know, goody two shoes. But I had my phone in my pocket at all times because I was just - and on vibrate. Like, not silent - because I needed to know if you were like, admitted and not doing well. This was before the Apple Watch and all those gadgets, or at least before they were common among middle class people. I feel like nowadays, I'm sure that's a whole dynamic on floors. Like, yeah, nurses don't have their phones, but they have their watch all the time. I'm curious how that plays out, but that would have been peace of mind for me, knowing that worst case scenario I could see a call coming on my watch and like, excuse myself at the next possible moment. But yeah, that definitely made me more anxious and attached to my technology. And to this day, that's something I am actively working on, like, dismantling. They always are like, don't go to bed with your smartphone in the same room. And I'm like, but what if something happens to someone I love and I need to get the call, you know? I don't know what the answer to that is. I guess you could have it across the room or, like, set up a landline, but -


Ella 31:29

I was going to say, let's bring back landlines. 


Kayla 31:32

Right?


Ella 31:34

 Well, thank you so much for hanging with us. Hopefully this was helpful or opened your eyes a little bit to the unpredictability and ever-changing nature of cancer treatment so that when and if someone in your life is going through it, that you're able to be present for them and patient with all of the changes. But also, we just wanted to acknowledge and call out how frustrating those changes can be to and hold space for that. Next week here in the United States we’ll be celebrating Thanksgiving. So we just wanted to touch on what happens when you're not feeling so thankful. When life is difficult, it can be really hard to have that same fervor for gratitude. And so we just wanted to spend some time discussing that. So we will talk to you then. And until then, we hope that you have the best week available to you.

Kayla Crum
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