Beyond Cancer - A Young Woman's Journey to Help Others - Episode #5

Her mother dies of cancer, and then four months later, Mallory Casperson, age 24, receives her own cancer diagnosis.  Mallory's journey and survival led her to establish Lacuna Loft, a nonprofit focused on education and support for young adults with cancer.

Transcript

Don't Give Up on Testicular Cancer - Episode #5
Beyond Cancer – A Young Woman’s Journey to Help Others

23:48

SUMMARY KEYWORDS

young adults, Lacuna Loft, cancer, testicular cancer, cancer survivor, programs, Max Mallory Foundation, Mallory Casperson

00:08 - Joyce Lofstrom 

Welcome to Don't Give up on Testicular Cancer where cancer survivors, caregivers, and others touched by cancer share their stories. The Max Mallory Foundation presents this podcast in honor and memory of Max Mallory, who died at age 22 from testicular cancer.

I'm your host, Joyce Lofstrom, a young adult and adult cancer survivor, and Max's mom. 

So with me today is Mallory Casperson, who is a young woman, cancer survivor, and CEO of an organization that she founded for young adults with cancer. And we're going to talk about all of this during our podcast today. 

Mallory, I'm so glad you could join me.

00:51  Mallory Casperson

Yes, thank you so much, Joyce. It's great to be with you.

00:54  Joyce Lofstrom 

So now, let's start out and just talk to us a little bit about your cancer journey.  You know, what happened when and any details that you would like to share? 

01:05  Mallory Casperson

Sure, my cancer journey really started when I was a senior in undergrad; my mother was diagnosed with cancer. 

And I remember the moment that I learned of her diagnosis very clearly; it was like very much a movie-kind-of-moment where I was out and about with friends and just literally sunk to my knees in the middle of the sidewalk. It felt very dramatic. 

Cancer is very dramatic. So I, you know, kind of went through her journey alongside her. And I was able to kind of gain some flexibility when I started grad school and was able to be one of the primary caregivers for her during the last couple of months of her life alongside my dad. 

And then just a couple of months later, I was diagnosed with Hodgkin's lymphoma. I was 24. And just it felt very much like, Oh, of course, kind of moment. Because you know, there was still so much grief and trauma around my mother's passing. That it just, it was like, yeah, of course, this is going to happen next, but very, very, yeah, very, very trying time in my life. 

But I had about a month before treatment started and was able to get a second opinion, which I would definitely recommend for anyone experiencing cancer diagnosis, more information from more experts, I think is always better. 

I was able to be on a clinical trial, which I was just really fortunate to have access to that. So always ask about those too. I have a hard time taking off my advocacy hat when I tell my own story. So, I might have some tidbits like that every once in a while. 

But I had about four months of treatment. And very, very thankfully, it's now let's see nine and a half years later.

02:54  Joyce Lofstrom

Wow. So let me just ask you, if I can, you said you went on a clinical trial. So that was your treatment. You didn't do chemo or any of the other traditional...?

03:04  Mallory Casperson

I did. I did four months of chemo. Okay, the clinical trial that I was on as opposed to using experimental drugs used an experimental protocol. So it kind of switched on its head, the idea that we were treating Hodgkin's lymphoma at the time, so 9-1/2 years ago, is quite a bit in the oncology science realm A lot has happened in the last almost 10 years. 

But at the time, we really treated Hodgkin's lymphoma with, you know, kind of a metaphorical sledgehammer. And they were attempting to figure out if we could kind of be a little bit less harsh in our treatments, because, you know, all these treatments have long-term side effects, have long-term consequences. 

And so, how do we kind of balance the need, the desire, to cure a patient with, you know, the desire also for them to have a healthy life afterward. And so I was very fortunate to get a little bit less of a harsh treatment and to be fairly side- effect free, almost 10 years out, which is, which is not always the case. So I've been very, very fortunate in that way.

04:06  Joyce Lofstrom

Yes, you have, and I think to be in a clinical trial and have a physician that was savvy enough to know about a trial like that and could guide you.  I just want to think that most physicians know about that. But you know, I think that's something, as you said, to get a second opinion, is to learn about other options that might be out there for you. So how long was you, you know, the recovery route, you mentioned. You had chemo for four months, and then, the clinical trial, is that right?

04:37  Mallory Casperson

So I had chemo for four months, which is all part of the clinical trial. The clinical trial had basically some different checkpoints along the way. And depending on how those checkpoints went, we would kind of change course, and the treatment would change. 

So, I was able to finish treatments and be marked as no evidence of disease in about four months, five months, I guess after my diagnosis. 

And since then, it's been mainly follow-ups, which have gone very well, luckily. 
But also, just dealing with some of the more psychosocial aspects of a cancer diagnosis. I really faced a lot of anxiety that I didn't have kind of prior to, really prior to my mother's diagnosis, some of it started to creep up in but definitely was more triggered during my own cancer treatment, diagnosis,  and survivorship. 

And just you know, those huge feelings of isolation that happen after a young adult is diagnosed, because they're just really aren't that many of us. There are way more of us than in the pediatric realm, about 80,000 young adults are diagnosed every year. But, it's just you don't always meet someone in the clinical setting who you know, is in your age bracket or even within 20 years. 

And so, it really takes some effort, I think, often to meet other people who understand what it's like to go through cancer as an adult. That's just for me, that was such a big hindrance for those first couple of years. 

I just felt very much like, my life wasn't going back to exactly the shape that it had before. And I didn't really understand why  So, for me, that's kind of been the longest-running series of long-term effects.

 06:11  Joyce Lofstrom

You know, that's interesting, because I was 25 when I found out that I had thyroid cancer. Now, this is 40 years ago, so quite different. But you're right, there were not many young adults around me, either. And basically, no one. I think that is a very good point in terms of how you deal with it. And in being a young person and understanding cancer and what's going to happen to you. 

I was convinced I was going to die. And it wasn't until a female medical student came into my hospital room with her textbook and sat down with me and explained the thyroid gland and everything that had happened. She explained that I was not going to die because of this surgery where they removed my entire thyroid gland. 

So yeah, I understand that, quite frankly. So one other question before we get into your organization. I know Max, he connected with you through your organization when he was ill, and he was 22. And he had a lot of friends that helped him. So I just want your comment on how your friends might have helped you through this journey.

07:21  Joyce Lofstrom

Yeah, I had a lot of wonderful friends from afar, who wrote notes, and you know, sent cards and made phone calls, and, and made visits periodically. I was in graduate school, though, and one of the perils of living in a college town is that people come in and out. And so, there had just kind of been an exodus of my people, so to speak, in, you know, into kind of the next phase of their lives. 

And so, it was a very lonely time for me and my now-husband, because we just had this kind of large turnover of friends. And I hadn't really made that next group yet. And so, we spent a lot of that time just kind of by ourselves, and, you know, figuring out what it meant to be together during a trauma like this. 

We were engaged at the time, and, and just trying to imagine what our wedding would look like with all of this happening. And so it was hard. But I think that you know, even having those small check-ins with friends who would even just text about how I was doing that day, it's just so life-affirming, you know, to get those little moments of love and connection with people.

08:37  Joyce Lofstrom

You know, you're right, I was away from my hometown, too. And I was diagnosed, and I had about three girlfriends who were very close to me and helped me through it. 

So I think those connections, they're important. And they're important when you go through this and to maintain over your lifetime, I think. So yeah, absolutely. 

Let's move on to your organization. And I've left the name out until now purposely. So you're the CEO of Lacuna Loft, which you founded. So I want you to now just talk to our listeners about Lacuna Loft, what it is and why you founded it, and anything you want to share.

09:15  Mallory Casperson

Sure, so Lacuna Loft has been a nonprofit for about five and a half years now. And we existed kind of in infancy stages, figuring out what our business structure needed to be and that sort of thing for about a year prior to that. So it's been, it's been a little bit of time now, which is just crazy to me that time moves in such strange ways.

But essentially, I saw when I was diagnosed, I lived in a college town. There were lots of young adults around me, but there was absolutely no young adult-specific support when it came to cancer, because of kind of the nature of where I lived and where the clinical trial was available.

I traveled about three hours each way to and from chemo, and it was a drive that I made about every other weekend unless there was some sort of issue that happened in the meantime.

And you know, that was fine, that was manageable. But it wasn't a drive that I was going to make on a random Wednesday night in order to go to a support group. And it wasn't a drive that I could make, you know, at random points in time besides for chemo and, and so I wasn't able to get any support from the actual hospital that treated me.

And in the hospital that was kind of closest to me, that was kind of the regional place for people to go when being treated with cancer, didn't have anything young adult-specific. So I started looking around.

My mother-in-law actually started a cancer support-type organization, a brick-and-mortar location in the Chicago suburbs in the 80s. And so she suggested that you know, we try to find one of those, and they, they were all about two hours or further north in the Chicago suburbs, because I was in Central Illinois at the time, kind of smack dab between Chicago and St. Louis.

And so, there was, there was nothing. I tried to, you know, find some kind of regional groups through Facebook, and it just wasn't really anything.

Then I found CancerCon, which is a young adult cancer conference gathering that an organization Stupid Cancer hosts, and it's a really, really wonderful, very, very powerful event. But it happens once a year. And I, you know, I finally found it, and it was happening that next weekend. And so I, you know, I couldn't go. It was already full, and so I needed to wait a whole year, and there was just this huge lack of peer support that I experienced because of basically geographically where I lived. 

I started talking with my mother-in-law about, you know, kind of what, what this huge gap that I was experiencing. And so I started traveling around a little bit and talking to the cancer support-type organizations, and you know, seeing if there were young adults in their doors, and if there weren't any, why not, and what type of programming they were running. 

And basically, it was just a huge need. They often weren't running programs for young adults. If they tried, usually, almost no one came, or the couple that did, didn't come back. This just was kind of left as a big question a big hole in my life, really. 

So I went, I went through graduate school. And at one point, just kind of with the anxiety and fatigue that I was still feeling several years out, just couldn't really progress any further. So I left grad school. 

I was tasked with what felt like a very, almost frivolous. I'm an engineer by training. And so when my now spouse suggested that I spend a year kind of figuring out what I wanted to do, I kind of thought he was crazy. But that year, I started a blog, that kind of focused on the lifestyle side of living with cancer. This was, you know, at kind of the pinnacle of the lifestyle blog movement.

12:47 Mallory Casperson

Just this idea of, you know, how do you live as a young adult after something so trying and traumatic as a cancer diagnosis?  There was really none of that information that I could find. 

And so, I started a blog, and through that blog, connected with hundreds of other young adults who had experienced cancer, I finally,y talked to my first young adult cancer peer at about that time. A woman in Australia and I spent several hours Skyping one night, and from there, basically grew Lacuna Loft.

It just became very apparent through all of those conversations that there were several overlapping issues that young adults were experiencing, really, regardless of where they lived, and what kind of treatment center they were treated at whether it was, you know, more of a kind of NCI-designated research institution, or whether it was oncology or kind of a community oncology center kind of anything in between. and regardless of diagnosis. 

There are many diagnosis-specific problems, but there were really several overlapping issues that didn't seem to depend on the diagnosis. Lacuna Loft set about to solve those three things. 

We, I learned through all those conversations that not only me but also, all of these other young adults were feeling isolated and really wanted to connect with one another. They really wanted their concerns to be validated because they weren't always by their kind of normal peers. And they definitely weren't always in the clinical setting. And they needed a safe space to meet these people and to have those concerns validated. 

So Lacuna Loft set about to solve those three issues. And I really tried to convince some other larger, way more-established organizations to kind of do this for me. Okay, as I said, I'm an engineer by training, I really didn't set out to start a nonprofit, but no one really would and so Lacuna Loft was born.

14:42  Joyce Lofstrom

That's great. Wow. Yeah.

14:45  Mallory Casperson

We have about 15 programs running right now. Everything from kind of really informal hangouts, all the way to longer-term, psychosocial interventions that are kind of wrapped up into you know, a bow of creativity, a creative workshop. 

And really, the main goals are to get these young adults connected to one another and to do so regardless of where they live. So, one of our very prime tenants has always been that we run online programs; we've done so for five years, right from the beginning. And so our young adults are really from all over. And they connect with one another while they're at home, and it creates this really, really lovely community.

15:27  Joyce Lofstrom

Well, I think you made a good point at the beginning when you're talking about Lacuna Loft in that you searched to try to find something already in existence to help you connect. That was either you know, too much travel time to the hospital, or whatever organization did not have anything focused for young adults. 

And I think that's a really good point to consider just in terms of finding support, anybody with cancer, the kind of support that you need. And the fact that you were then able, and probably your engineering background helped you a lot with understanding how people could connect online, although it's, it's pretty ubiquitous now. But you know, just to put this together and then get it going. I think it's a huge accomplishment. 

I know Max did find a support group, not at his hospital, but there's a cancer wellness center in one of the suburbs here in Chicago. He went to that a few times. But it was brand new, it was not something that's just there all the time, so to speak. 

So I commend you on what you did to get this going. And to help so many other people, young adults with cancer, I do want to ask you just to talk a little bit about the name because I think your name is very unique. And it makes sense. So can you tell us how you came up with Lacuna Loft?

16:54  Mallory Casperson

Sure. Yeah, lacuna means a brief pause or a hiatus, and loft seemed like a cool place to hang out. So kind of bringing together the ideas that you could come to lacuna loft, take this pause, this unnecessary kind of space to reorient and figure out what happens next with a safe group of peers. And then you know, to step back out again, when you were ready.

17:18  Joyce Lofstrom

I know, this past year, you had your auction event online. And I think before that, you'd held at least one, maybe two, in-person in Chicago.  I just wanted to comment on that. Because both of them were lovely events and great people participating in the items that you had up for auction, I think we're not just nice, but very creative, very, you know, wonderful gifts that people could bid on and then take home with them. 

So I just want to say that, you know, it's original artwork by some of the members or participants in Lacuna Loft. So again, just to compliment on that kind of activity.

18:01  Mallory Casperson

Yeah, thank you. Our community just is this really loving and inclusive place. And so when we asked our participants if they would be interested in a kind of turning one of our creative art programs into this, almost giving it forward. It was this idea of them creating art, but then giving it back to us and allowing us to auction it off. 

We were just met with overwhelming generosity, and then, the response from our supporters. You know, when given these art pieces to look at and to bid on was also just absolutely fabulous. So it was really kind of a coming together, of everyone involved with us at the time. 

And I'm definitely hoping that we host in-person galas and other types of experiences like that just to bring our community together in different ways in the future. Right now is definitely a bit of a strange time from that perspective.

18:59  Joyce Lofstrom

Yes, it is with the COVID-19 virus. That's this right now. So tell us,  Mallory,. what are you doing now in your life? Are you working in engineering or what's going on?

19:10  Mallory Casperson

Yeah, I am full time at Lacuna Loft. I'm the CEO, and I handle a little bit of programming, but otherwise operations and the philanthropy fundraising side of things, kind of our overall strategy and mission work. 

We have another employee Ariel Donovan, who is our chief program officer. When when we hired her about a year and a half ago, she really took the reins on a lot of our active programming.

She's just the most fabulous person to have in that role.  Her personality is
perfect for it. And she's just so innovative when it comes to taking some of the very core programs that we've had and making sure that we're continually breathing life into them. 

Both of us are working full time at Lacuna Loft. We are kind of going through a little bit of a growing period right now. We're deciding whether or not our name is clear enough for the broader vision that we've kind of grown into. And so we're experiencing a little bit of a rebrand. But yeah, otherwise, it's just a wonderful and dynamic place to be Lacuna Loft

20:21  Joyce Lofstrom

Wonderful. So why don't you tell us if someone wants to find out about Lacuna Loft? Or you know, get to your website? or How can they do that?

20:31  Mallory Casperson 

Yeah, lacunaloft.org, is the best way to do so.  That's where we exist online, all of our programs run online, either directly through our website, or through I used to say, a video chat platform. But now, everyone knows Zoom. So either through our website, or through Zoom, and so all of our signup, logistics, things like that are all through the website, as well. 

On the website, you can kind of check out our programs, you can check out ways to get involved or volunteer. You can read through, you know, years at this point, of archives of the blog, different stories of different survivors and caregivers' experiences. 

I will clarify, I suppose that when we say survivor, we really mean you know, kind of at the point of diagnosis. So we use patient and survivor pretty interchangeably if someone's inactive treatment, but a lot of that is personal preference as well. So that's just kind of the terminology that we use. But yeah, everything is at that website, lacunaloft.org,

21:28  Joyce Lofstrom

And lacuna is l-a-c-u-n-a just for that clarification. 

And my last question is: What advice do you have, Mallory, for any young adult, a young person who might be dealing with cancer, or think they might have cancer?  Any advice you want to share?

21:46  Mallory Casperson

It's just such an overwhelming experience. And so I'd like to share two things. 

One, that it is overwhelming. And so, there's, there's just, I think, just giving ourselves permission to feel overwhelmed, was very helpful for me, at least. 

And then the other thing that I would offer is just that it definitely feels like you're alone in this, but you are not. 

There are a lot of other young adults, for better or worse, who are going through this too. And, and that connecting with people who understand what that means to go through cancer as a young adult can be very, very helpful, very life-affirming. 

And there are lots of different ways to do that. Lacuna Loft offers certain ways, but lots of great organizations offer other ways. And so just figuring out kind of where your personality aligns with, you know, a desire to find others who understand, I think, is very helpful.

22:42  Joyce Lofstrom

That's great. That's really very usable advice, I guess, I want to say because I think figuring out what works for you is really important in terms of support. 

So I really appreciate that you took time today to be with us, Mallory. And maybe once you have whatever you're going to do with your rebranding, we'll have you back to talk about what's going on at Lacuna Loft.

23:06  Mallory Casperson

Oh, yeah, that would be wonderful. Thank you, Joyce. Okay, thank you. Have a great rest of your day.

23:11  Joyce Lofstrom

Thanks so much for joining me today on Don't Give Up on Testicular Cancer from the Max Mallory Foundation.

We have a website and it's at maxmalloryfoundation.com, where you can learn more about testicular cancer, donate and also send your ideas for guests on the podcast. And for spelling, Mallory is m-a-l-l-o-r-y.

Please join me next time for Don't Give Up on Testicular Cancer 

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