Episode 28: Transplantaversary
Ella celebrates two birthdays every year - the day she was born, and the day that her stem cell transplant gave her another chance at life. Join us on today’s special episode as we commemorate Ella’s 6th “re-birthday” and discuss her transplant experience in more detail than ever before.
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Be the Match national bone marrow registry
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. We're so glad that you're here. Before we jump in, we wanted to remind you that we would love to hear your story. If you're a listener and you have something that you think would be worth sharing on the podcast, we are looking at the possibility of bringing guests onto an episode. So like we've mentioned before in previous episodes, if you are listening along with us and you would love to share your story with us, please reach out and let us know that, as we would love to potentially have a guest on an upcoming episode or multiple guests. So just as a reminder, places that you can find us on the internet: we have an Instagram account @mysisterscancer. You can find us on the web at mysisterscancer.co. You can also shoot us an email; that would be hello@mysisterscancer.co. We would love to hear from you and to be able to bring some of your stories into our conversations as well, because we're sure that a lot of you have a lot to share that would really resonate with other listeners as well. So as you are listening today on December 14th, I guess you could be listening on another date, but this episode is coming out on December 14th. That is my transplant anniversary, or as we call it, my transplantaversary. Another word for it is my re-birthday. Most people only have one birthday, but I have two birthdays. The day that I was transplanted we also celebrate as the day that I was given another chance at life, and so happy transplantaversary to me. And today we thought in honor of that, we would kind of talk through my transplant, both the physical side of things and the emotional side of things. So Kayla, I would love if you could kick us off by kind of giving us a little science behind the transplant and maybe what even is a transplant.
Kayla 2:53
Yeah. Happy birthday. First of all, I wanted to start by saying that I'm not only speaking as the sister of a transplant recipient, but also as a former bone marrow transplant nurse and former volunteer with Be the Match national bone marrow registry for four years in college. So I'll talk a little more about that in a minute. But all that to say, I sort of have a variety of avenues through which I've learned about transplants. So we've talked about this before. If you were with us in the treatment season when we kind of broke down, what is chemo? What is radiation? I think we did a little bit about what is a transplant. You probably have heard the term bone marrow transplant, and that is technically true, although these days most of them are what we would actually call a stem cell transplant. Either way, they're all cells from inside your bone marrow. These are cells that your bones are constantly making, little baby cells, and they become your blood cells because we all actually get new red blood cells every 90 days. And also they supply white blood cells and a variety of other things in our bodies. So there's a couple of different ways to get at those cells, none of which is easy, as you might imagine. I think what people picture is, you know, a giant needle going into your hip bone and suctioning out the bone marrow. That is one way to do it. That used to be the only way that we had. And some certain cases today, they still do need to harvest bone marrow like that. Today, however, though, we do have easier ways. I say easy in quotes because none of it's really easy, but for adults it's almost more like giving blood, but for a longer period of time, maybe more akin to giving plasma. You are hooked up for 4 or 6 or 8 hours, kind of depending on how long it takes. And you have a line going into both of your veins on each arm, and they take certain cells out of one side and cycle back other cells into the other side of you, and it just takes a long time to get the right number of stem cells that they need, because there's not many floating around in your free blood at any one time, there are higher concentrations in your bone marrow. So that's one way. Another way, and the way that Ella had done to herself, is similar to what I just described, but through the femoral vein that involves more of an inpatient set up. The plasma type one can be done, you know, just at an outpatient blood center. But if they're taking it from your femoral vein, then they're going to want to do that inpatient. You might have just heard me say Ella had this done to herself. And if we haven't explained before, there are two different ways to get transplanted. So the two types of bone marrow transplants are autologous and allogenic. So autologous starts with the word auto which means self. And that's what Ella had. Her cancer had not progressed into her marrow. It was in other parts of her body, but had not kind of crossed that barrier into her bone marrow, which they discovered by taking a bone marrow biopsy and looking at the cells, which I've heard is kind of painful and not very much fun. But she was fortunate in that she could have her own cells. And that is a plus, because your body will accept those pretty easily compared to accepting another person's cells. However, there are many successful transplants done, you know, all the time with person to person cells. Just like we transplant other organs, we transplant blood stem cells and that is the allogenic part. So that is where Be the Match comes in. They are the national donor marrow registry. And you might have seen them around on college campuses. They have a big presence there. Sometimes if a community member has leukemia or lymphoma, you might even see, like, a bone marrow registry drive at your library or your town hall or something, or a school. I got to be a part of Be the Match for four years in college. It's really simple. All you do is swab your cheek. They can get your DNA off of that and you mail it in and then, you know, you fill out a questionnaire. You kind of agree: Yes. I would be willing to either have my cells withdrawn or, if needed, do it the old fashioned way and go under anesthesia to have it harvested to help somebody who needs their life saved. They check in with you every year or so, make sure you're still wanting to stay on and keep track of where you're living and how to get a hold of you, and a lot of times you'll get called and say you're a potential match and you might not be the ultimate match, but they do some further testing because it's not just your blood type, it's HLA factors which we won't get into. But there's like 12 main things that they need to line up to make sure that the recipient's body will accept the donor's cells. I used to talk to people about this all the time in college, and we never want to bully anyone into getting on the registry or guilt anyone, because we don't want you to sign up unless you're truly willing to help, right? We don't want to give anyone false hope. But on the flip side, once you explain that most of the procedures are kind of like giving plasma… if there's travel involved, if there's time off work, they compensate you financially for all of your time spent. Sometimes there are some shots involved, like you have to have some injections in the weeks leading up to the harvesting to boost your cell count, things like that. So if you can stomach needles and you would be willing to be compensated financially to take time off work and perhaps travel, then you have the ability to save someone's life. This is super crucial, especially for people who have a variety of different racial and ethnic backgrounds. A lot of disparity exists, as we know, in the healthcare system in general. Unfortunately, in the United States, white people have been favored in studies, research studies for decades. It's been done on white men. And even now, you know, there's just not as many people signed up on this registry who have diverse backgrounds. And so we really need that as well, because you're a little bit more likely to match with someone who has a similar, you know, background genetically to you. So we will link up to their website and happy to answer any questions anyone might have. Ella did not need a donor. You’ve probably heard of the movie My Sister's Keeper where like, she was the donor for her sister and that is something they do still check. If Ella had needed a donor, they would have checked me. They would have checked our parents. But surprisingly, like, it doesn't always match in your family or for a variety of other health reasons, maybe your family member can't donate. Yeah, so this saves so many lives every year, and we personally know people who have had their life saved by this registry. And then the really cool thing is sometimes - it's up to the person who received the donation, but you can develop a relationship with your donor that is just like such a cool, life-giving, literally life-giving relationship. And I've known people who have received it and who have given it on both ends. It's a very, you know, moving, empowering thing to be a part of. So that's my spiel for Be the Match. Please reach out with questions. And that kind of leads me into the emotional portion of our talk, Ella, because you didn't have that donor aspect, but a transplant, if I didn't make it clear before, is truly eliminating your current immune system to give you a brand new one. It's crazy because the chemo you had your first time with cancer was terrible, but then they were basically like, oh, this is going to be way worse. Because we have to eliminate your entire immune system and start from scratch with new cells. So. Can you just walk us through a little bit of what that was like, even from maybe your relapse diagnosis and like how the tone changed and emotionally, how you kind of were preparing for the transplant.
Ella 11:36
Yeah. I mean, I think what was so hard about it was that, like you were saying, and like we've said before, when I relapsed, it was like, okay, so all of those terrible things, like the chemo and everything that I had gone through before was like - didn't work, right? So then it's like, okay, so now what are we gonna have to do? And the transplant was very much, like, in their mind pulling out the big guns. And so I think right from when we started kind of talking about that and like I knew that that was a possibility, I mean, of course, I was just a bit overwhelmed by the possibility because I had no idea what it was like. And I think going through cancer a second time, obviously, it was hard in some ways to know what to expect, right? Because you know how terrible the treatment makes you feel. And just like the ongoing side effects and just all of the emotional turmoil that comes along with it. But in some ways it also was like, oh, I kind of know what to expect. With the transplant, I did not know what to expect. I was very intimidated by the thought of it, and I think just like the fear associated with, okay, like if I was that sick last time and like, leading up to this, like, what do you mean I'm going to be even sicker? Like, how… how? Right. And so I think just kind of dwelling in, like, that scary unknown place, but knowing this was really the best option available to me. So like, obviously I was like, okay, like let's move forward with it. But then, yeah, like learning all that would come with it too, like the last episode. Right? We kind of talked more in detail about the post-transplant isolation and like, how long I had to be in the hospital and just all of the limitations that I faced too, like, I think there was a lot of dread associated with, like the lead up to my transplant, just because it was like, I don't know what the heck this is going to be like. And I'm pretty scared of what it could be like.
Kayla 13:51
Yeah. And I believe you had to switch teams, right? So you had this oncologist who you really liked and trusted from your first go round with cancer, and she stayed involved in your story. But the actual, like, window of time where they were prepping your body and then recovering you from your transplant, you were under the direction of two different doctors who ran the pediatric transplant program. So was that hard for you emotionally?
Ella 14:20
You know, I'm really glad, actually, that you said that, because of course I know that. But I kind of forgot that. I do think that's a huge piece of it too, is like, yeah, I had developed this really good and trusting relationship with my oncologist. Right. Like, I knew that she had my best interest in mind, like, loved her as a person and her personality and then it's just a harsh adjustment like, transitioning to a completely different care team. Now, obviously I knew that they were like, world-renowned, like amazing doctors. But there's still like - you have to develop that trusting, therapeutic relationship with them. I don't know if therapeutic is the right word, but you know what I'm saying? Like the patient-doctor relationship can be tricky. And I will say I loved both of those doctors. They were very good and like everything worked out well, obviously. One of them didn't have the best bedside manner, and I think that was something I really had to get used to as well. Especially because when you're inpatient for that long and you're going through such a rigorous process, like, they are all up in your business, like you are seeing them frequently, right? Like it's not like one of those things where you have an outpatient visit, you know, every two weeks or whatever, like you're seeing them almost every single day when they're doing their rounds and when they need to check in. And yeah, it's a lot.
Kayla 15:42
Yeah, they were quite the odd couple or like the dynamic duo. One of them was like, kind of petite and wore bow ties and sort of had like, a goofy disposition, but was like very smart too and a little shy. And then the other one was like quite a large man, and was more of the domineering type and was like, get out of bed, get moving, and like, it's time to wake up. And so, yeah, I feel like they balanced each other out a little bit. And I'm sure too, I mean, we don't need to go off on too big of a tangent about this, but yeah, to switch from one woman to two men and also two men, both from different countries… so there was a bit of a cultural difference too. Yeah, it just affects the doctor-patient relationship and maybe made it a little harder to just onboard again. We love them both and we so appreciated their expertise and they took great care of you.
Ella 16:39
Totally.
Kayla 16:40
But it can be difficult when your care team changes. I also wanted to highlight how your transplant got delayed. Do you want to talk about that?
Ella 16:47
Yeah. So the lead-up to the transplant, obviously, like you were saying, I was my own stem cell donor. There's a lot that goes into that. And like your numbers have to be just right for them to do that harvesting. And so the way that they map out the treatment is so like, okay, we're going to get through this many rounds. Hopefully you'll be in this stable of remission. Your counts will look like this. Then we can harvest at this time. And then this many weeks later we'll be able to transplant you. I don't even fully remember why I was pushed back. I think I wasn't in - I wasn't in as stable of remission as they had hoped based on a scan or something. So they had to do more chemo before they could harvest my cells. So it ended up pushing my transplant back… I want to say about two months, because we were originally hoping and planning for an October transplant, and then as we've shared before, the unfortunate timing was that it fell obviously in December.
Kayla 17:51
Yeah. That's difficult. I want to also talk about what was going on in my life at the time. In the brief break between two cancers, I graduated from nursing school, I got married, I moved out of my parents’ house for the last time, got an apartment with my husband, and started my first big girl job as a nurse, and I naively took a job on the bone marrow transplant floor at the adult version of the hospital that Ella had just been treated at. And I, with my fresh rose-colored glasses, thought, I'll use my experience as a sister of a cancer patient to, like, be compassionate and caring as a nurse. And I like to think that was true, but… because you relapsed, it was very difficult for me. And you hadn't had a transplant either. So, yeah, I literally started my job two days before you relapsed. And then felt stuck because my husband was still in college. I was, you know, the breadwinner, I was kind of on my own financially for the first time. In retrospect, I probably could have gotten a different job at the same hospital and been like, you know what? This isn't going to work out, but I didn't have the foresight or the fortitude or the wisdom, honestly, that like, I would have now just, you know, having had a couple jobs, realizing that you can ask for things like that when you're two days into a job, you can probably leave and get a different one, even in the same company, at a company as large as that one. Yeah, but all that to say, I spent a year on the bone marrow transplant floor during the same 12 months, basically, that you were going through your transplant and that did a number on my mental health. Because I was working with adults and most of them -I would say two thirds, if not three quarters, were 50, 60, 70 years old and their outcomes just aren't as good as younger people. A lot of times you're buying time. You're not curing anything. I saw people who had 2 or 3 transplants. I saw people that their transplants never worked. I saw people die, as nurses do. And, you know, we had success stories. But because I was on the inpatient side, I didn't see those because they spend that month inpatient with you and then hopefully they never come back. And so the people that are doing great never come back. And it's just hard as a nurse in general to only see people at their worst. Right. But then if you lay on top of that, my family's, well, coinciding experience during that, it was hard for me to see clearly fact from fiction or, you know, see the other side, like a lot of people do great with transplants and a lot of people, it ends up curing them. And I knew it in my head, but I wasn't seeing it in my daily life. And so that was difficult for me emotionally. I worked nights, so I would like, come early, and I was on your tiny list of visitors, so I would like come visit you and Mom in my scrubs and then, like, walk, you know, to the nextdoor hospital and take care of patients who were going through what you were going through. And there are so many things that I would do differently. I would have switched jobs in the first place, but had that not been an option, I definitely would have asked for more supports at work or like, gotten a therapist immediately. Like, of course hindsight is 2020. We were just surviving, you know? When someone in your family is in crisis, you're not always thinking clearly and that took a huge toll for sure.
Ella 21:57
Yeah. Well, and I think too what you were saying about - like I remember that like you would come with your little lunchbox and your water bottle and like, your backpack and everything, like on your way to work. And I mean, think we've touched on this before. Like, I think it was really challenging for Mom and I to be in a bubble there at the hospital and not able to really leave or do anything or be connected to the outside world. But I think it was also just as challenging for you and Dad and whoever else in our life that loved us and cared about us to feel like you kind of had a foot in both worlds, right? Like you were attentive to Mom and I and what we were going through and what our family was going through. But then in many ways, you were still trying to like - like you were saying, survive, right? Go through the motions of your day to day life like… ugh, that's just so hard when you're just, like, carrying around this heavy emotional load with you all the time and, like, the anxiety and just, like sadness that you're just carting around with you while trying to go about your day, I can imagine was just really difficult.
Kayla 23:07
Thanks for saying that. I think, right, we never want to do the grief Olympics, as they call it. You can't compare it. It's like apples to oranges. But yeah, like Dad and I are never gonna understand what Mom and you went through. And you and Mom will never understand what Dad and I went through, because it's very strange. You feel like half your heart is just always checked out. At least it did when you - especially when you were inpatient for that long. I just felt like I was only half present all the time, which probably didn't help my performance at work either. I remember poor Dad this one night, like, he would often come visit you because he was another one of your few visitors and he like, got home late, right? He works all day. He drives out an hour to see you, drives home an hour, and like, somehow the freezer had been left ajar. Like, we had this issue where the drawer freezer, like, wasn't quite shutting all the time. And he got home and everything, and it had thawed. So he like stayed up all night and like, cooked all the meat because otherwise like, it's just a waste, you know what I mean? And like, remember this? I'm just like, my heart just broke. Like picturing him, like, making steak and burgers at, like, 2 a.m. after, like, visiting his, like, bald, sick daughter in the hospital and, like, living there alone, too, because I wasn't living there anymore. Oh, that just makes me so sad. And it's so different from, like, what you and Mom were going through, which also breaks my heart. Don't get me wrong. It's just like, you can't make this stuff up. And it's like those weird lived experiences are just like, so strange and hard and difficult because we all just, like, have these normal life things keep happening to us while we're dealing with, like, right, that would stink in a normal day. And you'd have to be like, do I throw this all away or do I cook it all? And he was a huge part, like you had mentioned on the last episode, of prepping the house and finishing the floors and making everything clean and ready for your arrival. So yeah. Oh yeah, it was a difficult time for everyone for sure. So if you're listening and you are anticipating a transplant or have gone through one or are literally in one, I just want you to know that whatever you're feeling is valid, and everyone is allowed to feel feelings about it, you know, in the direct family it's affecting. Pitching how hard each of you have it against each other doesn't really help anything. We had days when we would bicker and don't think it was ever explicitly about that, but like, right, some of the undertones are like, everyone's just pushed to the end of their rope and so it can get grumpy. But guess I don't have a ton of encouragement because it's just a really hard period. Other than just saying, like, yeah, other people have been there and it sucks and I'm sorry. Well, we could move into the happier portion of this episode, which is that last year, December 14th, 2022, marked five years of your transplantaversary or re-birthday. So to be honest, I was holding my breath a little bit the whole time until we hit this five year mark. And the reason is, they don't - they meaning the medical community - don't consider a transplant a true cure for blood cancers until you hit five years with no relapse. So… I just like always in the back of my mind, it's like another relapse could come any time, you know, like I tended to be a little pessimistic based on what I had seen as a nurse. So it was a huge load off of all of our minds, I'm sure, to truly hit that five year milestone last year. How was that for you, Ella? Had you been also kind of like, stressed about it and like, was it a huge relief or what was that like for you?
Ella 27:10
Yeah, I wouldn't say that I was like, holding my breath the whole five years. But I mean, I definitely think it just was a huge, like exhale. So in many ways, maybe I was holding my breath a little bit, but I mean, definitely just like a sigh of relief and such a good feeling. And yeah, I mean, of course, like not to be a negative Nelly, but like there's always that possibility for relapse even after the five year mark. But I think it just gave us a lot of peace and reassurance and, yeah, just, happiness honestly to reach that milestone, because that's a really huge deal and I don't take that for granted.
Kayla 27:54
And I think five years too, just really makes you stop and be like, wow, that was a long time ago. You know, half a decade. And when you're in your 20s, like we are, that's a pretty big chunk of your life. So in a way, too, it was a good moment to reflect and be like, okay, this happened five years ago. Look at all the things that have happened since then and all the good things and all the bad things and how like, cancer is just part of the story. It's not the whole story. That was good for me, to reflect.
Ella 28:23
Yeah, I really - I really agree with that. And I think it's interesting too, because I feel like around the five year mark, maybe even a little sooner than that… It's really interesting because I've really gotten to a point in my life where, like, a lot of people don't even know that part of my story, right? Like… I'm in a professional setting. I meet a lot of people all the time, like meet new friends. I started at a new church, you know, in the last two years. So it's just really interesting to be so far removed from it that, like, it's not my entire identity anymore. And it's like, and maybe we should do a whole ‘nother episode on this. But like the whole concept of people only know that if you share that with them, you know, when you're that far out. It's just kind of a weird thing, like, because for so long of my life, those few years, like it was my total identity and everyone knew it, right? I mean, maybe not a stranger at the grocery store, but pretty much everyone in my life knew that about me. And so I think, honestly, that was a really refreshing point in my life to hit too, where it's like, okay, yeah, like you said, this is a part of my story, but it's not my entire story, and it's also my story to share. So it's like I can choose to just not share that with some people. And I think that's okay too.
Kayla 29:45
Yeah, I think one, two and three years out even… even for me with you as my sister. It was strange to have people not know, because it was such a huge part of my life and I always used to resent, like - sometimes I would like, bring it up when appropriate and then like if someone never, ever brought it up again, I'd be like, oh, they don't even care. But then, yeah, now that it's been six years this year. It is a little bit refreshing to be like, okay, that can come up and I can talk about it without a ton of emotion rising up, which shows growth. I've dealt with a lot of it in therapy and the writing and this podcast, honestly. It just feels good to be like, okay, like it's not a fresh wound, you know? Something interesting that happens to me, Ella, and I have a feeling it probably happens to you too: often in professional settings or spiritual settings like church spaces, somebody will be like, “you're really mature for your age” or like, you're like, “you're only X age?” You know, because we're still both in our 20s. And I don't say that to like, pat us on the back, but that's I think… we've just gained this sense of like, what matters in life and had to do a lot of growing up in a short amount of time. You know, for a lot of people, their 20s is still a time of having fun figuring out who they are, figuring out what they want their life to look like. And that was sort of all pushed to the side for us. And we grew up quick. And so I think it's interesting now when people find out your age somehow or another, like your birthday comes up or whatever. I often get like, surprise that I'm not at least mid-thirties. Do you experience that too?
Ella 31:31
Oh yeah, all the time. People are always shook. And some of that, I will say, is that my husband's quite a bit older than me. So, like, you know, if it's like people running in like, circles and they know how old he is or whatever, I think that also just amplifies it. But I think that's really true. I mean. When you go through stuff. Right. Like I think it ages you, and I mean I think there's good and bad to that. But yeah, I agree. I mean, I think our young adult years were definitely not what you would necessarily picture as the young and free typical young adult years. But I don't know that I'm mad about that because I will say, like, I think you're right. I mean, I think we've both really developed a lot of wisdom and concept of what really matters in life that maybe we wouldn't have if we hadn't been through all of this.
Kayla 32:25
And speaking for myself, I know that I gained a lot of coping skills after the fact, so it's not so much a result of the experience itself, but the mental health care that I sought afterward to deal with lingering anxiety. That has served me well just internally in every part of my life, but also in my relationships, like in my marriage, in my professional relationships, I'm able to be like, wow, I would have reacted to X, Y, or Z so differently five years ago, and I feel like I would not have been motivated to seek out that mental health care and do a lot of internal growth without, you know, a big push from, you know, a shattering life event. So again, we struggle with this. Well, I'm not grateful it happened, but I'm grateful for how we grew through it. That's always a weird truth to hold. And again, I don't want this to come across as like we've learned everything and we're not even 30. That's not what I'm saying.
Ella 33:29
Not at all.
Kayla 33:30
And I want to acknowledge there are plenty of people that learned life's hard lessons at age 5, 15. You know, so in some ways we were behind the - the wagon, so to speak, of a lot of young people. We had pretty great lives before cancer. Everyone's story is different, but that is how it feels kind of now. I do always think it's a good practice to reflect on growth because especially in the United States, it's always more, more, more. Better, better, better. Right. Reach for perfection. And so like, practices like journaling that ask you to look backward and be like, hey, like, I coped with this mistake I made at work today so much better than I would’ve five years ago, but…
Ella 34:19
Totally. Well, thanks so much for hanging with us. If you're still listening, we hope that you learned something or that you resonated with something. Um, and next week we will be doing a special Christmas episode, because you will be listening as we lead up to Christmas. So sharing some thoughts, probably about the Christmas that we unfortunately spent in the hospital and just how loaded Christmas can be for a lot of people who might be walking through a lot of different things. So thanks again for listening and we will talk to you next week for our special Christmas episode.