[00:00:08] Speaker A: My name is Nancy Farrow, also known as Mama Lou, and I'm the founder of Epic Experience.
Epic Experience mission is to empower adult cancer survivors and thrivers to live beyond cancer.
I hope that as you listen to campfires of hope, living beyond cancer, you find hope, healing and empowerment. Through stories and education, we aim to guide those impacted by cancer and more importantly, offer love and support to anyone out there who needs it.
This is beyond cancer.
[00:00:59] Speaker B: Police. Still on our side. The family men's pride and woes. We will rise once again.
Hello, everyone. This is Gail, aka Sunshine. Welcome to an episode of keeping it real on the campfires of Hope podcast, where we will dig into the mental and emotional highs and lows of cancer survivorship. Today we are keeping it real with Cindy and Leonard, and I am so excited to have both of you here. So thank you very much for joining us.
[00:01:31] Speaker C: Thanks for having us.
[00:01:32] Speaker D: Yeah, thank you.
[00:01:33] Speaker B: So first, I'd like you both to tell us a little bit about yourself, where you're from, how you know each other, and please, both of you include one fun fact. So, Cindy, why don't you go first?
[00:01:46] Speaker D: Okay. My name is Cindy.
My camp name is Smokey. And let's see, I'm 60 years old, and I live in western Massachusetts with my husband and my dog. I have two grown kids. And let's see, fun fact about me.
After my cancer treatment, I started painting. And my favorite thing to paint are farmers and their livestock. And I have a very big painting in our local general store of a farmer with his prize winning ox.
[00:02:23] Speaker B: And when you say very big, how big are we talking?
[00:02:28] Speaker D: 4Ft by 5ft.
[00:02:30] Speaker B: Oh, my. That is awesome.
[00:02:32] Speaker D: Yes.
[00:02:34] Speaker B: Cool. Leonard, how about you?
[00:02:36] Speaker C: Certainly. Hi, I'm Leonard, also known as Fox. I'm 31. I'm living with my wife and two cats and a dog in New Jersey in a small one bedroom apartment. Gets crazy.
Me and Smokey are representing the east coast, so this is awesome. Too awesome.
I currently work for an insurance company, which is always funny to me with my diagnosis.
[00:03:01] Speaker B: Yeah, really?
[00:03:03] Speaker C: They do fire insurance, which is always like, okay, it's least out of my realm, but I do it for them. So I do compliance and security for them in the it realm. And then by night, pretty much I just do music as a hobby. My random fun fact, I had to think about this for a while, but it was many years ago, but I got to skate, so I love longboarding. I'm a big skater, so I got to skate the Broadway bomb in New York City, which is. You skate all of Broadway. The street Broadway in New York during, like, rush hour traffic? Pretty much. It's insane. So you're dodging cars and traffic and stuff like that? Of course. My funny story is I got hit by a taxi while I was doing.
[00:03:44] Speaker D: Oh, no.
[00:03:45] Speaker C: And I was perfectly fine. I was more annoyed than anything because it was more like a tap. But I finished the race, which I was happy about.
[00:03:52] Speaker B: Congratulations. That is an accomplishment.
Wow. So how did you guys meet?
[00:04:00] Speaker D: We met at camp. We met at the winter camp. And. Yes. And it was great. And it was great to meet you, Fox.
[00:04:10] Speaker C: Same, same. And it was great to meet Smokey because we kind of kicked it off. We, uh, we found out we went through the same exact treatment for different types of lymphoma, which was. I didn't think I would ever meet anyone like that because every time I was in the hospital and stuff like that, I talked to anyone that was. But that was going through the treatment that I had. And it was cool. Cause Smokey loves music, too. Uh, very much an artist, and I absolutely just. We connected over a lot of things. So it was really cool to connect not only over a similar diagnosis and treatment, but just life itself.
[00:04:44] Speaker B: Well, let's hear a little bit more about each of your treatments and kind of the similarity, despite the so many other demographic factors that are not the same. Right. You have some things are very much in common, which is very interesting. So, Leonard, why don't you go ahead and tell us a little bit more about your kind of cancer brief story.
[00:05:06] Speaker C: Sure. So, in 2022, I was diagnosed with gray zone lymphoma.
It was a crazy kind of story. My wife really saved my life. I was a couple months, not feeling too great. Slowly but surely, any typical man will say, I'm fine, I'm fine, I'm fine. And then I'm, like, barely able to breathe on my couch. My wife's like, you probably should go to the doctor. And I was like, yeah, probably. So I went, um. They got it. I got an x ray done. Um, and, you know, in America, usually, I think you'd hear two days after your x ray, they'll give you results. It was an hour after, uh, they gave me a call, and they're like, you need to go to the Er immediately. And they told me I had a potato, like, a potato sized mass in my chest that was pushing up against my heart and had collapsed my right lung. And I was like, oh, okay. That explains why I couldn't breathe and stuff like that. Um, but the what the oncologist had told me is I got struck by lightning, uh, with my lymphoma. Gray zone. Lymphoma is gray zone because they don't consider it Hodgkins, and they don't consider it non Hodgkins. It's kind of right in the middle, and it's a very weird treatment. Um, so they kind of. It's guesswork.
And I got very lucky because the one doctor oncologist that I actually saw wrote his thesis on this gray zone lymphoma. And, I mean, like, in my whole world, I was just. That was mind blowing to me. I was in the right place at the right time, and I was very grateful for that.
And I had went through six cycles of chemo.
It was epoch, which Cindy is my epoch sister, and did six cycles of that. And then I took a month off from that thought I was in the clear, but I relapsed on small mass on the other side of my chest. So they're like, all right, we're going to do two more cycles of epoch with printuximab or something like that. It's hard to remember all these medicine at the end of the day, and then they're like, all right, we're going to just go straight and just nuke you with all the chemo in the world and do stem cell therapies, which was an absolute Sci-Fi experience, but really cool. And now I could grow a mustache, which is crazy.
[00:07:28] Speaker B: Little things, right?
[00:07:29] Speaker C: Exactly.
[00:07:32] Speaker B: So, Cindy, how is your experience similar? Different from Leonard's?
[00:07:38] Speaker D: Well, I'm a little older. I'm, like, twice your age, dude, almost.
So I kind of similar in that I had been. I'm kind of a weekend warrior. I had been out paddle boarding, and I was actually swimming across this small pond that we paddleboard on. And when I got into the car, I was like. And when I was paddle boarding, too, I felt like a tugging in my chest. And then when I got in the car, my husband was kind of making jokes, and when I started laughing, I couldn't stop, and the jokes were just not that funny. And so I thought, something weird is going on in my chest. And then the next week, I couldn't really breathe. And we. And it was 2020, so it was right at the beginning of COVID And so the woman on the COVID hotline said, you know, honey, if you can't, like, feel better with some home remedy, you should go to the ER. So I went to the ER, and, you know, we were there for hours and hours and hours, and they did every test possible. And then the doctor came in and said, I'm really sorry, but you have a large mass in your chest. And at first they thought I had stage four lung cancer.
But then they discovered it was primary mediastinal B cell lymphoma. And so it was an avocado size, not a potato.
And it was attached to the pericardium of my heart and my lung. And I had this thing called superior vena cava syndrome which makes you kind of look like Frankenstein because your blood is like blocked and looking for alternative passages. I had these ropey veins on the side of my neck and my face was puffed up.
Anyway, so then I ended up at mass general and I had six rounds of dose adjusted re PoC inpatient. So that was like 560 hours of chemo, I think. I don't know if you counted their box, but no, when you say it.
[00:09:51] Speaker B: That way, that sounds like a lot of hours.
[00:09:53] Speaker D: Yeah, it was a lot of chemo. Yep. And then, um, nine months later I had a relapse. And so then they really dosed me with a lot of chemo and then I had a stem cell transplant.
[00:10:08] Speaker B: So really so similar, I mean, in so many ways. So, Leonard, yours was gray zone. Cindy, yours wasn't gray zone. But still they, they treated it in the same way because they were both a lymphoma. Okay. Yeah.
Do you think there's a unique connection because you have a similar diagnosis and went through the same treatment? Did you guys find that when you went to camp?
[00:10:32] Speaker D: Well, I have to say that when I started talking to Fox about it, he told me this thing that made me feel so much better even though you might not think so. But he said to me, he said, you know, smokey, my doctor told me that I was kind of lucky that I was male, young and that I wasn't overly thin because women who are older, thin, older and thin. And what was the other one?
[00:10:59] Speaker B: Female.
[00:11:00] Speaker D: Women. Yeah. People who are older, thin and female have a much harder time. And it made me feel much better when you said that because my healing process, like he, Fox had his in August and he's out there running around and thriving and I had mine two years ago and my hands become claws from chemo, you know? And so I think that the age makes a really, really big difference. And.
But I'm really. I feel like you're my little brother. Like, I don't, I don't want that to sound bad, but I feel, like, really proud to know you. And I kind of feel like you're my little brother who has a shot at it that I kind of. I mean, we're both in remission, but I feel like you're kind of ready to go in a way that I'm not. And so, um, anyway, that it was.
[00:12:02] Speaker C: Cool to see smokey that, like, you had again. Like, that's why I told you, because you had, like, things stacked against you. Because I liked ice cream. I gained a lot of weight through chemo because it was just stress eating and stuff like that. And then having to get a stem cell transplant. And they're like, yeah, we're going to kill every cell in your immune system and then try to bring it back to life. And I'm like, oh, my God, let's go. Let's try it. And them saying, like, wow, it's so good that you gained all this weight, because meanwhile, when I was diagnosed with lymphoma here, I'm thinking I lost all this weight because I was dieting. And, no, it's cancer. You lost weight cancer. So I gained it all back. Um, but they're like, you're at the perfect. You're perfect age for this. You're. You're a young mandev. Um, and you. It's good that you gained weight over chemo. And then when I met Smokey, and I'm, like, standing next to her, and I'm like, you're, like, half my size, smokey. Double my age and a woman, I'm like, that's, like, literally what they told me. Like, if I was any of those things, I would have a very hard time. So I was just like, wow. I was so impressed because you were thriving at camp, too, and you were really. You were doing everything, and I. And I love that because it was just. It was, for me, just like, wow. Like, I was so fearful about my diagnosis and treatment and even moving forward after admission, thinking if I ever had to do anything again. But it gave me such confidence to be like, wow. Like, if Cindy can do it, I could absolutely do it, too.
[00:13:31] Speaker B: That's awesome. Well, Leonard, you just fed right into my next question. Because at camp, we do talk about fear. We talk about fear of the unknown. We talk about fear of what's to come, how none of us knows what the future holds.
Can both of you open up about how fear has affected you on your cancer journey? I'll let either one of you go ahead and go.
[00:13:55] Speaker D: Well, for me, my cancer journey kind of started a really long time ago because my mom died of cancer when I was eight, and so that was her cancer journey, but it also became mine because I lost my mom.
And back in 1970s, nobody taught kids how to grieve, you know, and so I just busied myself for like, 50 years. I just, like, just raced away from fear, from grief, from everything. And I was. Became a workaholic. And, you know, I love my kids and my family, but I, you know, I.
I buried myself in other things so that I didn't have to deal with the fear that I was going to die young because she died young.
But then when I got cancer, it kind of stopped me in my tracks. And when I was in the hospital and the dose suggested. Our epoch is inpatient. And so in some ways, I was lucky because I had a really good hospital social worker and I was in crisis because I happened to be in treatment, like on the anniversary of my mom's death, during my first line treatment, and then when I had a relapse and my stem cell transplant. And so my social worker talked to me and said, oftentimes when people have trauma and then they get cancer, those traumas come up and you have to deal with them. And so she really helped me to think about who I was as a woman and that I wasn't gonna meet the same fate as my mom. My doctor was like, look, we've made a lot of gains in cancer therapies since 1971, so I think we got you.
So I feel much more at peace now than I did. And my mother, kind of, as an angel, visited me a couple of times when I was in the hospital, and so did other relatives who had died of cancer. And so because of those things, I feel at peace probably for the first time since I was seven. Wow.
And so I want to stay on this earth because it's a good party, but I'm not really afraid of what comes next anymore because I think I'll be surrounded by a lot of love. And love continues, I think, past this earthly place.
[00:16:42] Speaker E: I hope you enjoy this episode of our campfires of Hope podcast. Here at Epic Experience, we make it our goal to serve the cancer community through our collective programs, such as this podcast, our week long adventure camps, regional programs across the country, and thrive VR, a custom virtual reality experience benefiting patients in cancer centers. If you would like to be a part of our community of supporters, please go to epicexperience.org and click donate.
Thank you for listening to campfires of stories of cancer with gratitude Wingman, also known as Colin Farrow, executive director of EpIc Experience. EpIc Experience is a registered 501 organization.
[00:17:27] Speaker B: That'S so interesting that you, you had this fear, and then when the thing came to pass, the fear went away, obviously, because of these other factors. The social worker in visiting an angel. That's very interesting. Thank you for sharing that, Leonard. How about you?
[00:17:46] Speaker C: So the biggest thing for me that I've realized over a lot of time, because a lot of my life has just been fiercely independent, thinking, oh, I got to take care of everything myself and do everything myself. And a lot of that was my treatment was a lot of times my wife would come in and be like, oh, let me be here and stuff. And a lot of times, it's like, no, I just kind of, I want to be alone. Like, I feel like I need to face this alone. And it wasn't necessarily the best mindset, I realized looking back. And the biggest thing for me is I was getting my eyes opened a little bit. I had joined, like, one call with a support group through my hospital, and it was two patients going through leukemia and myself, and they were talking about just starting treatment, too, and I was already done with it, and they were telling me about what they were nervous about, stuff like that. I was like, wow, it's crazy to hear, like, everyone having these same fears and same thoughts, and then going to camp, especially, was just like, wow. Like, I'm meeting all these people that had different experiences and then meeting Cindy, who had exactly the same experience as me, and everyone joking about, like, oh, you know, I'm going to stop mid conversation because I can't remember what we're talking about because the chemo and stuff and just those, like, things that were, like, making me cry at home because I was so frustrated with it, people laughing about and stuff like that. It was a lot of being, like, wow. Like, acknowledge his fear in a way and understand that it was a very difficult time, but life is very crazy. It's very unpredictable. And for me, that was a hard thing to grasp. And I was just like, wow, okay. These people are living it. They're making it the best, and everyone's thriving and stuff and getting out there and doing something they love.
That was something that, like, I really needed to, like, reconnect with myself, even. And definitely hearing everyone's story and connecting in those ways. Cause, you know, being told you're young and getting cancer and be like, oh, my God, you're so young. Like, how are you doing this? And me being like, holy crow, like, I could die right now. And I haven't really gotten to do a lot of the stuff I wanted to do in life was definitely something that still even cripples me with fear in a lot of ways, but it's still something I said a lot of intent throughout each day to try to be like, I'm going to live every day to my fullest now, because who knows if I'll get struck by lightning again. Hopefully not, knock on wood.
Exactly. But still make sure I take every opportunity to live.
[00:20:24] Speaker B: Yeah, I like that. It's like we all have these fears. The fears don't go away, but it's a matter of facing them and maybe responding them a little differently, like with laughter instead of, you know, trembling.
I really like that.
So I'm going to ask both of you a specific question, but if you want to jump in on the other's answer, feel free. So, Cindy, do you think that our past traumas play a role in how we look at the future? And how can we utilize our past experiences to prepare us for the future?
[00:21:04] Speaker D: Past traumas definitely do. But I feel like if you are able to gain a little distance and really work through those traumas, that's key. It's key to give yourself space to grieve, to work through the trauma, because it's just going to settle in your chest for decades if you don't. And so I feel like personal experience, right?
[00:21:33] Speaker B: Yeah.
[00:21:36] Speaker D: And now the trauma that I'm kind of working through is just the trauma of so much treatment and just accepting myself and accepting that I'm not the same person that I was four years ago when I was diagnosed.
My body is different. I'm, you know, I have memory issues from so much chemo and. But you know what my, but accepting that is really key because other parts of my brain have kind of opened up. Like, I wrote two poems this week, and I haven't written poetry since high school. Oh, that's pretty good.
So I feel like if you just find, if you allow yourself to sit with the trauma and be sad, if you're going to be sad, hopefully you have an outlet. Writing is really cathartic, I think, or a counselor or a partner. But I think you need to be able to work through the trauma of treatment, too. And.
And the other thing is, in order to do that, I've become kind of protective of myself. Like, I don't engage in conflict.
And so people who were kind of conflictual in my life, you know, I had to kind of choose teams when I got sick, and those teams are still in place because I'm still healing and I'm not ready to.
I can't engage in petty issues or conflicts with people. And maybe it's cause of what Fox said. Like, every day is so valuable and wonderful that I just don't have time for the small stuff anymore.
[00:23:29] Speaker C: Yeah. Surrounding myself with, like, positive people in my life and stuff like that, you know, I've acknowledged that conflict could be good at times. Definitely. Cause sometimes I need a different perspective, and I need someone to set me straight. Um, but a lot of the times, that conflict wasn't necessarily healthy, and, um, it came from a negative place. And I always will think how eye opening getting, uh, lymphoma was, because I always think it was, like, really at the core of me, where my mass was, and I'm like, wow, it's really close to my heart, was pushing up against my heart. And at the time of my life where I was, there's a lot of negativity in my life that came to light through my treatment, which is always mind blowing to me. So I definitely agree with Smokey on that, too.
[00:24:12] Speaker B: While both of you had. It had a tumor at the center of your being. Yeah, very interesting. That.
[00:24:20] Speaker D: And we use, like, the potato avocado metaphor.
[00:24:24] Speaker B: Like, potato, potato avocado.
[00:24:27] Speaker D: You know, avocado.
[00:24:29] Speaker C: I don't eat potatoes that often anymore.
[00:24:31] Speaker B: I was gonna say, I am not surprised.
So, Leonard, how have you been able to manage your fears? I know you brought it up before I even did, so im guessing this is kind of a theme. So how have you been able to manage your fears of the unknown and whats to come?
[00:24:51] Speaker C: So its challenging, to say the least. Its something that I struggle with daily. And very recently, ive had very eye opening conversations with my wife, even about it, because a lot of the times I catch, she catches me. It's it's I'm trying to catch myself more and more in this, like, autopilot mode where the fear has taken over, where I'm just, like, going each day, just going to work and then doing that and slogging off and kind of filling my life with things that, like, don't really fulfill me and stuff like that. And it was very eye opening to see, hey, like, I'm losing connection with myself in a lot of ways. And the ways that I've started to manage it more and more is acknowledge that it's been a big problem in my life. See that? Oh, wow. Like, you've been, like, in the questionnaire, it was, think of something like a fun fact about yourself. I struggled with it because I was like, wow, I haven't thought about myself in that way in a very long time and think of something fun. And it was great because my wife sitting there next to my wife, and I'm like, what's a fun fact about me? She's like, I'm not helping you with this. I'll tell you fun facts about myself, but you got to figure this out on your own. You got to think about it. I absolutely loved it because it was just like, wow, you're right. I really got to reflect on myself, and, um, the biggest thing for me is getting support for it. Um, I think my physical recovery was great. I was very lucky, again, like, to be exactly where I needed to be in my health and life to get a good recovery from treatment physically. But the mental aspects of it are a big toll, and especially for what I've seen is people my age and, uh, especially my gender. It's. It's very hard to have anyone open up about stuff like this. And I have found out a lot of people in my life now are more female because they love to talk about emotions and stuff like that. I love connecting, and I'm starting to meet new people that are actually open and male, too, which is huge.
But I've seen, like, therapists about and stuff like that. Talk therapy is amazing. But the one thing I will definitely, like, underline bold, capitalize is support groups. That was like, so I'm trying to really stay in touch with the support group that we even made at camp and go through the resources at the hospital and stuff, too. And, as I said, seek therapists and stuff like that, any support that I could get. And that's been the biggest thing for me. And then, because, especially when you meet people that have went through a similar walk in life and getting to laugh about it, even, like, laugh about, like, oh, yeah, potato and avocados.
Exactly. When it was. When I was told I had a potato sized mass in my chest, I think back I was like, my heart dropped. And, you know, it was like, oh, my God. Now it's just a funny story to think, and it's funny to think how stubborn I was to even go to the, like, urgent care to get, like, an x ray and stuff and just laugh about a lot of the past and put light in things and just realize that, like, holy crow, I went through all of that and persevered over that. And the other thing that's really helped me is keep the mindset of that is a lot of times I lingered on the pain of, like, oh, my God, I was, like, doing all this chemo. I was again, like, even as Cindy said, like, it was week long in the hospital, and then stem cell. You're in the hospital for about a month, and it's. You think back, and you're like, holy crow, that was a hard month. But I think back on it now, too. And I think of all, like, the nice people, the beautiful people I met at hospital.
I think of all the beautiful people that came into my life then, and a lot of the fun that I got to have. Even I got a whole year off of work, which was pretty nice.
And that's a conversation for another time about how healing even that was, because my whole life was involved with just work, work, work. And again, it was more of like an autopilot response, of just trying to go through life. And now life's more like, hey, like, you're waking up each day. Let's make the best set of today. Let's figure out something to do and enjoy it and connect with yourself again, because you need to.
[00:28:52] Speaker B: Yeah, that autopilot is a pretty effective coping mechanism, but it kind of dulls life. Right? And again, if you can share those fears and learn that you're not the only one experiencing them, it kind of takes the sting out of it, so. Well, is there anything else that you guys would want to share that I haven't asked you about?
[00:29:10] Speaker D: I just want to say that laughing every day is pretty, pretty key. And when we were at camp, I have to say that Fox had this really infectious deep belly laugh, and it brought joy to everybody. And so thank you for that, Fox. And also, I feel like it has keeping things a little bit light and laughing with your care providers, your family, I feel like that actually adds years to your life. And so it is one thing that I was reminded of, for sure.
[00:29:49] Speaker B: Yeah.
[00:29:51] Speaker C: And I definitely agree. Like, positivity is huge to surround yourself with laughter, especially, like, I love to laugh. And hearing everyone comment on my laugh at camp just, like, really was like, wow, I really need more of this life. It was like a sign always to me because I was just, like, very depressed at the time, very full of anxiety all the time, not laughing as much as I needed to do, and I was like, wow, okay. I meant to laugh. This is awesome. And, you know, just always staying in connection with yourself is something big. I learned, too. Like, I lost a lot of contact with my musical side. And just hearing how Cindy's, like, painting and writing poetry and stuff, that's awesome because it's like, something out how I connected again. And it's great to be writing music again.
I love playing my guitar again. It's like finding a new love again, and it's been awesome. And then just again, I've found a really. I'm very lucky to have my wife by my side, who has been an amazing partner to me and really has stuck through a lot and a lot of fear and seen the definitely dark sides of me, but always is making me laugh. And even when we've had, like, such a big disconnect, always just at the end of it just being like, hey, like, let's laugh about this. Let's, like, think of something funny. Let's take care of you and stuff. You're going through a lot. Holy crow. Finding people like that in your life, especially friends and family, keep them, like, hold on to them tight because they're very, very awesome to have.
[00:31:10] Speaker B: Yes.
Thank you both so much. This has been an absolute pleasure. I really appreciate your vulnerability.
Fear isn't something we like to talk about. It's kind of one of those things that, like you said, Leonard, we.
[00:31:27] Speaker D: It's.
[00:31:28] Speaker B: Well, for whatever reason, it's embarrassing, their shame. So we don't talk about it. We pretend it doesn't exist. But the fact is that we all do. So I appreciate you both talking about it. Thank you very much.
For the rest of you, thank you for keeping it real. Until the next time we gather around the campfire, keep living beyond cancer.
Thank you for listening to this episode of Campfires of Hope. Living beyond cancer. For more information about epic experience and our programs or to donate, please visit our
[email protected], dot music for this podcast is provided by Moonshiner Collective. If you enjoyed this episode, please rate and review us so we can share our story with more people. Also, be sure to subscribe wherever you get podcasts so you'll know when new episodes are released. We hope you come back and join us for our next episode.
Miracle on our side. The family man's bride and woke. We will rise once again.
Close.
