Episode 11: August Anniversaries
Most of us have dates on the calendar that give us pause - the death of a loved one, 9/11, the day a community shut down due to COVID-19. Today on the podcast, the sisters discuss diagnosis and relapse anniversaries and how the timing of tragedy can affect that season for years to come.
SHOW NOTES
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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.
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Kayla 0:42
Welcome back to the My Sister's Cancer podcast. I'm one of your hosts, Kayla Crum, here, as always, with my sister Ella Beckett. We are so delighted that you're listening in today. If you haven't been with us before, we've been unpacking various aspects of what it's like to be a young person and her sister diagnosed with cancer. And today we're going to talk about anniversaries. So Ella's diagnosis anniversary - actually, both times she got cancer, it fell in August, and since it is now August, we of course are already thinking about that and thought it would be a good time to sort of unpack what that means for a lot of us who've gone through something rather traumatic like this. Before we dive into the episode, I do want to remind you you can find us over on Instagram @mysisterscancer or our website, mysisterscancer.co. We also have a Patreon account, which is an app or a website, either one, P-A-T-R-E-O-N. And that allows listeners to support podcasters and other creators’ work. So we'd love to have you join us over there. We'd love to grow that community so it can be a more private space where people can share some of their own stories and interact with other people who relate to them, maybe other siblings and cancer survivors. And even if you're not one of those, just somebody who is invested in learning from this community. So check us out on Patreon if that is something that you're interested in. So, Ella, we've talked about your diagnosis before, obviously, on this podcast, but I don't think we've specifically talked about the dates or anything like that. So do you want to just give a little overview of how your - like, about when you were diagnosed the first time and then how a year later, we were kind of having déjà vu?
Ella 02:54
Sure. Yeah. So I know you had said that both cancer diagnoses were in August, I think technically the first one - we didn't get the official diagnosis until September 1, but a lot of our August was consumed with testing and waiting and just trying to figure out what was going on. So we kind of talked about in the very first episode where we unpacked my original diagnosis, I had gotten home from a trip. I had found this lump at the base of my neck. I believe that was end of July, maybe early August, and then it was about two to three weeks of trying different antibiotics and things like that, just trying to determine what was causing the symptoms that I was experiencing. And then my biopsy was scheduled, I believe it was August 30, something like that. And then, of course, we had to wait for the results. And again, I think we've mentioned this before, but I was also scheduled to move into college the day after my biopsy, not knowing those results. So August of 2016 was the first time around, and it was just a really hard month, obviously, with just so many unknowns, wanting to be excited for college and getting everything ready, but at the same time having that really nagging feeling in my gut that something was super wrong. And that I don't know, I just feel like I knew that I wasn't going to be able to stay at college. And so it was so… push, so much push and pull, of wanting to be excited, preparing, needing to do the things to get ready, and then also just knowing in my heart that something was very wrong. And then, yes, like I said, we got that initial diagnosis September 1. But then the second time around, I remember, I think I first had concerns, I want to say, like, late spring, early summer of that next year of 2017. So I had been put in remission in December of 2016. And then, as I was saying, late spring, early summer is when I first just noticed a few things about my body. And I felt a few small lumps again, and had concerns about that, obviously, because of what the first lump led to. And then honestly, I was reassured by doctors that it was probably nothing. It could just be my lymph system restarting, et cetera, et cetera. So it took several months then, because then it was August again. And I believe I had a CT scan, just my, like, three month checkup or whatever. And they typically did, I think, like a chest X ray. And because I had these concerns, they were like, okay, we can do a CT scan just to be thorough. And I think this was, like, early August. And that's when they noticed that something wasn't quite right. I believe it was, like, my thymus gland that appeared different than usual or something like that. And so that's when they scheduled, then, another biopsy. And then I believe we got the news of the relapse on August 18. So just a lot going on in August for our family two years in a row. Yeah.
Kayla 7:07
And coming up on your first year anniversary of your diagnosis, you didn't even make it, right, to September 1.
Ella 7:18
Right.
Kayla 7:20
Like, I think all of us can probably relate to the fact of having a dreaded anniversary in your life, whether it's the death of a loved one or even, like, as a nation, how we mourn 9/11, that kind of thing. Those types of things. You can feel them in your body almost before you acknowledge in your head, oh, I've been really grumpy and off for a week, and then you're like, next week there's this reminder of what happened in years past. Anniversaries, I think, do have a way of doing that to us. So we were already coming up on your first anniversary of your diagnosis and never even got that far before it came back. And so it was just a really weird time of… I - I'm so glad you spoke up and trusted your body, and I never doubted you, but I was so hoping you were wrong, and that, like, it was just that fear and that, like, anniversary coming up that was making you, like, second guess everything. Like, I just kind of remember, like, hoping against hope that that was the case. For me, obviously, I experienced things differently, being the sister, and between her two diagnoses, I graduated college, got married, got my nursing license. So there was a lot going on in those, like, eight months or whatever between her remission and her relapse. So I have this distinct memory the second time of meeting you and mom and dad with my brand new husband at a Mexican restaurant to celebrate my birthday. My birthday is August 15, and you guys came out near our new apartment - we had barely lived there a month - and met us at this Mexican place, and we got margaritas. And you had this giant bandage on your neck from your biopsy. So by August 15, they had done the CT, seen something concerning, and done another biopsy, and it was just, like, so unsettling because we moved you into college a year ago with a big old bandage on your neck and just… I don't know. It was such a strange meal. You were such a champ to come anyway and be in public like that and just deal with it and celebrate me. And I think we all were kind of like, there's not really a reason not to celebrate Kayla's birthday how we always do, but we're just in this limbo again where we're waiting for results, and it's just such a weird combination of things. I don't know. The first time you got diagnosed, I got engaged August 17, so two days after my birthday, and I came home from that - I was away on a trip, and that's where I got engaged. And you must have already been doing blood work and stuff, but you hadn't had your biopsy yet. But even that, it was just strange, the engagement. I remember touring venues and stuff, and then, like, oh, Ella's biopsy got scheduled, and then I wanted to be there with Mom and Dad. And it's just that month holds a lot for us now. So now, as we come upon it every year, it just sort of brings up a lot of memories.
Ella 10:46
Yeah, I think what you were saying as you were talking, I was thinking about how it can be really hard when there's unknowns in your life or something really hard that you're going through. I think it can make all of those normal good things that much harder, because there's always almost like that bitter taste to the sweet stuff, too. Like that dark cloud kind of just hanging over a lot of those normal celebratory things. Because I remember that so clearly, too, what you were saying about the Mexican restaurant and your birthday and just all of the things. And I think that was actually the day of my biopsy. I think I went straight from my biopsy out to dinner, and we had asked the surgeon, is it okay if I do this? And he's like, yeah, if you're up to it. And I don't know. I just have so many memories. Not just in August, obviously, but throughout the whole thing it’s just, like, it makes those exciting celebratory times a little bit harder because you're just so caught up in everything that you're going through. And then there's like this pressure that you want to be feeling up to everything, and then you feel bad because you're taking away from other people's celebrations of things. I don't know. I just think it's so tricky to go about life, obviously.
Kayla 12:32
Yeah. And it's hard to hold two things. I mean, our whole podcast is kind of about the fact that it's so hard for you to be the one going through it, feeling like you're dragging everyone else down. It's simultaneously hard for me to plan my wedding around your chemo, have my birthday, all those things. So it's hard to hold all of that without getting into grief comparison or Olympics or whatever. It's hard. I've experienced feeling, like, “grow up, it's a birthday,” you know what I mean? It shouldn't have mattered. You can just skip a year celebrating your birthday. And yet, if anything, cancer taught us making it another year, another loop around the sun is, like, a big deal. And so we really love to celebrate birthdays. And I've always, I mean, I'm one of those people that I have a summer birthday. I was so lucky. I grew up celebrating it at my grandparents cottage. I've always been about the birthday, and so, yeah, it's like, I didn't want to just let go of it. And yet those two years in a row, it was a little bit tainted. I don't know. Like you said, it's all just very complicated. Although, looking back, I kind of wish - why did we have to get together on that day of your biopsy? I could have handled going out a different night, although, right, like two or three days later, you got the diagnosis. So then it's like, would that have sucked more? Probably. Maybe we were like, let's just do it before the world implodes again.
Ella 14:18
Probably that. Yeah.
Kayla 14:20
Yeah so, like we mentioned at the beginning, just the fact that anniversaries continue to kind of haunt you forever in a way. And so even now, I think that August brings up some feelings in my body that I sometimes don't acknowledge. And then I'm like, oh, hey, you're back. I have a memory of sitting on the beach with my family and my husband's family purposefully to celebrate my birthday. For a couple of years there, I had both our sides of the family over, and we all went down to the beach and then had a cookout my house to celebrate my birthday. And a couple of years ago, I just was sitting there with everyone, like, most perfect day possible. Like, all the people I love celebrating me on the beach, my favorite place, and I had this huge weight on my chest. And it's not just you. I'm not saying, like, “and it was because of Ella,” but that was, like, undiagnosed, untreated anxiety. And so my birthday was a huge wake-up call that year to, like, okay, if you can't relax and take a deep breath on your literal best day of the year, like it's time to get some help. So I'm not tying a direct string from that to your diagnoses days and things, but I can't help but think that our bodies are sometimes wiser than us or more in tune than us to what we are trying to suppress and things like that. And so sometimes anniversaries can bring up stuff that you've shoved down all year or have been low-key dealing with all year, and then it kind of bubbles up bigger, I think, as you get closer to that day. Do you experience any of that, Ella, still now that you're like five years post-cure or I should say post-transplant?
Ella 16:22
Yeah, I think I definitely experience some of that still now to this day. But I think those first few years, right after everything happened, I definitely experienced somatic symptoms. I think I definitely struggle with a lot of anxious feelings around those anniversaries. And I can feel in my body just kind of a yuck feeling, if that makes sense. And I think what you were saying earlier too, I think I did wonder that first year after, if I was just experiencing a lot of anxiety around the time of anniversary when we were really trying to figure out, was it back? Is it something different? What's going on here? I think a lot of the symptoms I was experiencing, I was like, is this anxiety? Is this actually the cancer back? And I think part of that was because I was being told by all of the doctors, like, “oh, it's probably not back. The odds of that are really slim.” So then you start to get in your head about, like, do I actually know my body best or should I trust these people who went to school for eight years and actually know a lot about medicine? But no, in more recent years? I don't necessarily think I experience it as much in my body, but I'm still very aware of the dates. And I think people are different on this. I think for some people, anniversaries aren't as big of a deal. Like, I know some people in my life, like things that have happened in their lives, they don't even necessarily think of the day or feel those symptoms in their body or get anxious or have all the feelings necessarily tied to the day in particular. So I think it's probably different for everyone, maybe.
Kayla 18:47
Yeah, I'm sure that's true. My - I don't know if you'd call this my woo-woo side wants to be like, maybe the people that don't feel that way are just suppressing it. But I don't know what it's like to live in everyone's body, so maybe there are some people who it just doesn't get to them as much. Yeah, I guess. I would be interested to know from our listeners if you want to chime in on Instagram, if this is hard for you, or I wonder what factors make it more or less difficult. I think time of year can affect that. Your transplant happened shortly before Christmas, so now that's always something we try to honor and celebrate amidst the holiday season. Obviously, Christmas was really difficult. Thankfully, it was successful. So we have positive memories now. You actually engrafted on Christmas Eve? I believe so. It was like the best Christmas miracle or whatever, however you want to frame that. But I hate to think about if the opposite had happened, right? And what Christmas would mean. I think that's something a lot of people deal with around holidays is like, when something bad happens near something else, it can be really difficult. August is interesting because - I've always felt this being a smack in the middle of August birthday, there's a lot of cognitive dissonance happening in August. Like August 1, everyone's got the school supplies out. At least here in Michigan, we go back to school towards the end of August. It's getting sooner and sooner. When we were kids, we often didn't go until after Labor Day. But I've noticed now it's like in the August 20s sort of, that kids are going back and you can see that in the commercials and in the stores and you start to feel a little bit sick - at least me, I start to feel a little bit sick of the humidity. And you start seeing your first fall ads on Instagram and stuff, and you're like, it might be nice to wear a sweater again and have a pumpkin spice latte. Like, I do have that basic side of me that is like, oh, it'll be nice to hear the crunch of the leaves and sit around a fire. And yet my birthday, being in the middle of August and me loving the beach and summertime, I'm always kind of like, no, don't let go yet. You still have a whole month of summer. Don't give in to the media machine; embrace, like, don't rush it away. Don't rush summer away. Because here in Michigan, at least on the West Side, this is often, like, our hottest month of the year, like, the best beach days of the year. And it's like we all kind of start to pretend like it's over. So all of that to say, it seems kind of fitting that push and pull with how we now have layered on your diagnoses amidst these other happy things we do in August, my birthday, our town has a big festival every August. It's like there's a lot of positive memories in August that kind of counterbalance the negative memories.
Ella 21:55
Yeah, I think it's so interesting that you highlighted that, because I never really thought of that before, how much August is a push and a pull and how we just experienced that so intimately with waiting for results and just the cancer diagnoses and all that came with all of that. I also think what you were saying about not wanting to let go of beach days, I completely agree with. If you know me and Kayla, you know that we both just love to be at the beach. And one thing that I feel strongly about the struggle of letting go of summer is that here in Michigan, we know that winter is coming and cold, colder temperatures are ahead. And as beautiful as fall is, in many ways, it is things dying all around us. Right. The leaves are dying and falling. And a lot of other plants and things like that, and then everything kind of goes into hibernation in the winter, and I think this kind of ties into my relapse. Because in many ways, It was so much harder, because we knew what was coming, just as it's hard to let go of summer because we know that we're going to have six feet of snow over the winter. Maybe that's exaggerating, but I think when we got news of the relapse and that the cancer was back, it was, like, so much harder, because we knew that winter was coming, so to speak, and we knew what I had to go through. I guess we didn't really know what, right, because the first time around was hard enough. And we didn't know then what that season would look like for me with treatment, because the first time around wasn't effective like we thought it would be. So I just think there's a lot of connections here, and we just love using the seasons as a metaphor. Kayla, I think the work that you've done to outline my journey in line with the seasons has been really helpful.
Kayla 24:25
Yeah, I sort of created structure around your cancer journey as I first started writing about it, noticing like, themes, and I find it helpful to write comparing different elements of the seasons to different elements of treatment and survivorship. So, yeah, what you just said about the transition into fall really makes a lot of sense as we looked ahead into the dying, in a way, of parts of you, like we were killing off the cancer cells and you were losing your hair and we were losing the leaves, and it all just kind of lines up in a sickeningly perfect way. So that is where we're headed in the next couple of weeks. Believe it or not, our overarching theme for all of these episodes so far has been diagnosis. Obviously we've unpacked quite a few topics underneath that umbrella and probably strayed a bit off the path, but we'll be more treatment-focused in the fall. So you'll get a couple more weeks of summer content and then we're going to talk a little more sciency about what treatment exactly is and what that looks like in the fall, and then get into the side effects and how maybe you can best help people who are actively being treated and all of that. So that's where we're going next. We'd love to have you continue to listen with us and until next time, hope you have a good week.