[00:00:08] Speaker A: My name is Nancy Farrow, also known as Mama Lou, and I'm the founder of Epic Experience.
Epic Experian's 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.
[00:01:08] Speaker B: Hello, everyone. This is Gail, aka Sunshine. Today we have Jana Jones joining us around the campfire. Jenna, it is so good to see you again. Or you guys can't see her. I can see her. I got to share a week with Jana this winter at camp, so it is a pleasure to have you back.
[00:01:26] Speaker C: Thank you. Thank you for having me. I'm so happy to be here with you and your listeners.
[00:01:32] Speaker B: Awesome. Well, why don't you tell us a little bit about yourself, your background, and please include one fun fact.
[00:01:40] Speaker C: Sure. Like you said, my name is Jana Jones, but I did become starshine during the camp in February.
I live in San Diego, California. I have three kids, two boys. Devin is 22, Alex is 20, and my daughter, Brooke is 18.
I just celebrated my 28th anniversary to my husband, Doug.
[00:02:05] Speaker B: Congratulations. Oh, how wonderful.
[00:02:09] Speaker C: Oh, my gosh. It's such a magical place.
So we, my husband and I, we have an auto repair shop, and so he works at the shop day in and day out, and then I work from the house. I do the paperwork and the marketing and stuff. Yeah. And the fun fact that I thought of is something that during camp, everybody had a big deal about.
I used to have a snake named Rosie.
[00:02:37] Speaker B: I remember Rosie.
[00:02:39] Speaker C: Yeah. It was a good conversation. Some people definitely don't like snakes and don't want to talk about snakes. Like Mama Lou.
[00:02:47] Speaker B: Yeah.
[00:02:48] Speaker C: But, yeah, I used to take her for walks daily.
[00:02:52] Speaker B: Oh, my God.
[00:02:52] Speaker C: Or slithers outside. Slithers? Yeah.
[00:02:55] Speaker B: On a leash.
[00:02:56] Speaker C: No, free.
[00:02:57] Speaker B: She would just.
[00:02:58] Speaker C: Yeah, she would just scoot around and I would follow her.
[00:03:03] Speaker B: That is a first. I do not think we've had anyone with pet snake, so congratulations.
[00:03:07] Speaker C: Yes.
[00:03:09] Speaker B: So tell us a little bit more about yourself, specifically, your diagnosis story.
When were you diagnosed?
How did it come about, your treatment, all of that?
[00:03:20] Speaker C: Sure. Well, two years ago, I was diagnosed with stage two b melanoma, skin cancer. I had an ulcerated beauty mark on my side, and unfortunately, I had it for two months. I just didn't think it was anything but dry skin, so I just put ointment on and in a band aid, and I just left it. And then at a routine doctor's appointment, I asked my. My doctor to, hey, can you look at this? And she was like, wow. Okay, let's take a picture. Let's get called derm. Yeah. And when I went to derm, I'm looking at the posters on the wall, and I'm like, oh, my goodness. That looks just like my beauty. So I kind of knew then, and just a couple days later, I got the call, and she told me it was melanoma, and I had to go to surgery. So. So I did that a couple weeks out. It happened really fast. I guess I had pretty invasive.
It was bleeding for a couple months, so I got. It was a three inch diameter removed. And so I have a nice, beautiful nine inch scar on my side.
It's nice and curvy, you know, so I'm good with it.
[00:04:33] Speaker B: Hey, wait, is the positive. I appreciate that.
[00:04:37] Speaker C: Right? You got to.
But, yeah, the surgery. And then since it was actively bleeding, we thought that there could be a chance that I could have it. They did check my lymph nodes, and those were negative. But we went ahead and started an immunotherapy, and I did the drug keytruda, and it was every three weeks for one year, I would go and get injections. So, fortunately, my last one was last August.
[00:05:06] Speaker B: Congratulations. Yes.
[00:05:09] Speaker C: I'm now in limbo for eight months.
[00:05:12] Speaker B: Meaning you don't do any follow ups or you're.
[00:05:14] Speaker C: I do. I go over three months, and then every six months, I get a CAT scan.
But I do see my derm every three months and my oncologist. But no, the limbo is that after treatment feeling where you're just like, okay, I'm not continually monitored. I'm not going in for the treatment. I don't know who I am, where I am in my life, you know? So it's just kind of like an open ended time, I guess.
[00:05:42] Speaker B: Yeah. Tell me more about that. How. How are you coping with that?
[00:05:47] Speaker C: Yeah, this is. It's been interesting because I didn't know that there. This was something. You know, I've actually found it. There's books called dancing in limbo, and.
[00:05:59] Speaker B: Really?
[00:06:00] Speaker C: Oh, yeah. There's a lot of people that I've found in the cancer community that are also experiencing the same. You know, it's just kind of like you're constantly monitored, you're constantly going in for those treatments, and they ask you all those questions, do you have headaches? Do you have inflammation? Do you have, you know, all those things? And they test your blood and you know exactly where you are on that health wise. And then it's gone, and then there's kind of a fear that sets in. It's like, I don't know how I'm doing, and I know I'm okay, but then you start to panic, you know, oh, there's a new beauty mark, or, you know, oh, I've got a cough and you know.
[00:06:42] Speaker B: Right.
You know, that's interesting. I don't think I've thought of it that way. You don't have those constant metrics. You don't have somebody asking you all those questions. And so there you are in limbo. Yeah. How did your treatment, your immunotherapy recovering from surgery, how did all of that affect you? Physically?
[00:07:03] Speaker C: Yeah, physically.
With the surgery, it was. It was tough because it was on my torso. So I think it was four months out that I actually started back with yoga. I found. Yeah, I found this wonderful group, be well therapy. It's a nonprofit that does yoga classes for survivors, and they modify their classes. Yeah. And so I started with chair yoga, and then I now I've been doing the floor yoga. But, yeah, it was a nice, easy way to jump back. But. So that was from the surgery and the surgery, you know, once that was over, it was like, okay, that's done.
But the treatment was difficult because immunotherapy is fairly new, so the doctors don't have an answer to a lot of questions, like, how long is this side effect going to last? What kind of side effects am I going to get? Because it's different for everyone. But I definitely got fatigue, which is across the span normal.
I still suffer from fatigue. That's hard. But skin autoimmune deficiencies. So I have a rash that I'm affected by. I'm photosensitive.
I'm heat sensitive. So hot water going out in the sun burns me really quick.
Yeah.
Let's see. There's my stomach. I couldn't eat well during treatment. It just. I don't know if it was inflammation or what. We did, we did research and we tried to figure out what was wrong, if I had ulcers or whatnot. But there was no signs of anything, but just a side effect of the treatment. So I currently cannot eat more than half a cup serving at a time.
It's made me lose a lot of weight.
[00:08:56] Speaker B: I bet.
[00:08:58] Speaker C: On the positive side, there's benefits there. I like being skinny, but I did not like being malnourished.
[00:09:04] Speaker B: Yeah.
[00:09:06] Speaker C: Yeah.
[00:09:07] Speaker B: Do you think that the yoga going back to the be well, I'm sure that helped you physically. Do you think that helped you mentally and emotionally as well?
[00:09:14] Speaker C: Absolutely. Yeah. There's something about being outside of my home, because I actually tended to stay inside a lot. And if it wasn't for my dog, thank goodness for my dog, you know, I needed to take him out and so I'd get some air. But I was home so much that I wasn't around people, and I needed community.
I was going through, like a depressive state with all of the cancer reality, you know, the not feeling good, the scary thoughts. For me, being melanoma, it was the sun was my nemesis. And that's everywhere, right?
Yeah. So going to be well was my first step. And I loved them so much. They were so gentle and everybody was so kind. And so emotionally, I felt that I wasn't alone anymore, and I had somebody that I could talk to, and I realized that, wow, I need to talk.
[00:10:16] Speaker B: Yeah, definitely.
[00:10:18] Speaker D: 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 campsite, regional programs across the country, and thrive VR, a custom virtuality 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.
[00:11:02] Speaker B: Did you look for others? You know, when you were in this limbo feeling alone, did you look for other sources of help besides be well? And what did you find when you were out there?
[00:11:15] Speaker C: Get ready. I've got a long list.
I think the first thing that was important is that I knew I needed help, so I had to go out and get it.
Being with myself, twenty four seven, I felt very alone. Even though my family was there, friends were there, I did have people around me caring and doing what they could.
It's always hard to realize they're not in my head, they're not in my reality, so they don't know how I'm feeling or what I need. So I had to ask. I had to go out myself and find the things that I needed to make myself better. So be well was one of them. And then through my cancer clinic, my oncologist would refer my social worker from there, which then I got into group therapy.
[00:12:07] Speaker B: So nice, so good with all melanoma or all different kinds of cancer, it was all different.
[00:12:14] Speaker C: So it was stages zero to three.
I'm under 50, so that was good, too.
[00:12:20] Speaker B: Yeah.
[00:12:20] Speaker C: They try to corral you with people that are similar, but it's so difficult. There's so many different types and scenarios of cancer.
But group therapy. I started, I did a mindfulness class through my health coverage and nutrition classes because my, my stomach was so affected and I needed to make sure that I was getting the best nutrients I could.
But I did this program at the YMCA. It's called live strong and they are a program where they pull together twelve survivors. I think they've increased their number. Now it's national, so anybody with a YMCA or New York bike can try to join. But it is a program that helps strengthen you, teaching you modified exercise routines from their program. So, like, they have yoga classes, they have tai chi classes, they have bar classes and balancing classes. And so throughout the program they teach you how to modify those yourself. So that was great. Yeah, it was like the first thing was, it's a community and we talked to each other and we got to do the strengthening together and grow together. And not just the, the body, the physical part, but the mental part was there, too. So livestrong was really great. I did immerman angels. They have that program where they set you up with a mentor, and I kid you not, I am 49, I have three kids and they set me up with another, like 49 year old that has three kids, melanoma, but she went six years ago. So it was really great. There were differences, but it was so nice to talk to somebody that was so, so similar.
[00:14:20] Speaker B: Yeah. That is amazing.
[00:14:22] Speaker C: Yeah. Yeah. I did this program, it's called anti cancer Living program and I was actually part of the first pilot, but since then I think they've done their second program. Fantastic. They go through parts of living like fitness, your environment, your diet, your mindfulness, and they give you tools on how to better all of those. So, like your environment, there's so many toxins in the air.
[00:14:56] Speaker B: Yeah.
[00:14:56] Speaker C: So bad for us. So bad for anybody. There's so many toxins in foods. So they gave us a lot of tools, used experts, and put us in a group again. So there I was.
[00:15:07] Speaker B: There's a theme. I'm sensing a theme.
[00:15:10] Speaker C: Yeah. And I had to go for nine weeks. And so I got to know this group very well and we're still in connection with each other. We zoom every month or every two weeks.
[00:15:20] Speaker B: Oh, that's great.
[00:15:21] Speaker C: Yeah.
[00:15:21] Speaker B: Well, and I'm guessing somewhere along the line you heard about epic experience. So how did you hear about epic?
[00:15:28] Speaker C: Yes. Yes. That's another one of my groups.
Well, my search for supportive communities, I found epic online, and I saw that they had the campsite, and so I applied, and I was just, you know, crossing my fingers, but doubtful that it would ever happen. And they started their regional programs, and so I signed up for one nearby, and I got to go sailing in Dana point with 40 other survivors and their caregivers. And that was cool because the caregivers got to go. And after the wholesaling experience, which was great, we went to pizza. And I guess it was like a campfire meeting that I had no idea what this was about because I hadn't gone to camp, but everybody was asked to talk, share your story. How are you doing? And the caregivers got to talk. And my husband, for the first time, he never thought he had a role, a place that it wasn't about him, it was always about me. And he felt so supported.
[00:16:35] Speaker B: That's great.
[00:16:36] Speaker C: Yeah. And I thought, wow, this company knows they've got a great thing going on. They know what they're doing.
[00:16:43] Speaker B: That's a really unique part of those regional events is having the caregivers, because a lot of times they aren't. They don't feel like it's their place to talk. Right. Because we're the ones who are going through it all, but they're going through it with us. So I'm so glad he had an opportunity to talk.
So tell me about epic. What were your expectations going there? Did you have any?
[00:17:04] Speaker C: First of all, I had no idea. I saw pictures because I follow them on their social media. I love their Facebook posts. I love their Instagram posts. And I saw pictures of. Since I went in the winter, I got to see, you know, something to expect was what to wear because I'm from southern California and the.
Exactly.
So, yeah, I just. I just was hopeful because I was at this point where I really needed help. I had a moment where, you know, my treatment ended, and then I got a call from my doctor, and they left a message from the oncologist, said something, and it triggered me, and I had an anxiety attack, and I just broke down. And I, at that point, realized that, ooh, I've got so much to deal with still. Yeah, I did not. I. The whole process went so fast that I didn't really think about and process everything. So when I went to epic, I was, like, really hopeful that I would get to talk, I would get to process what happened to me and did you. Oh, I did. Yeah. You know, it was so safe there. It was like mama Lou was there, and, you know, I got to be taken care of. And everybody you were there, and everybody that helped, that volunteered has experience with the camp, with the cancer, with the struggle. And so it was like, I just got to go there, that you guys put this nice, warm blanket over my shoulders and said, come on in, honey. And so, yeah, I just got to open up and talk. I got to laugh so much.
[00:19:01] Speaker B: Yes.
[00:19:02] Speaker C: I hadn't had that much fun in so long. I've always been like, okay, what's next? What's next? And worry and making sure that my kids are taking care of on my house and my job and. And I got to just let go of all that. I left my phone in the cabin, and I put my ski bibs on, and I got to walk in this freezing cold, and. Which was great. And I thought, you know, of all the times I. I couldn't go to summer camp, it wasn't right for me. So this winter camp was perfect.
[00:19:38] Speaker B: That's awesome.
[00:19:39] Speaker C: Yeah.
[00:19:40] Speaker B: Yes. Laughter is one of the things I remember, too, until my sides hurt. I mean, it is. Which is.
I don't know. Some people might find that odd. Here you are. You're at cancer camp. You all have cancer. You've all been through chemo, and yet we're laughing our heads off about the very thing being bald or whatever it happens to be.
[00:19:58] Speaker C: Yeah, exactly. Well, all the. Was it chemo brain jokes.
[00:20:02] Speaker B: Oh, absolutely.
[00:20:04] Speaker C: It's like, yes, we can laugh about this because it is ridiculous.
[00:20:07] Speaker B: Ridiculous. It is. So, what did you take home that you have now incorporated into your life back in California?
[00:20:16] Speaker C: You know, I kind of try to leave my phone, and I try to live in the now definitely talk more, and I let my feelings out, and I let everyone around me know whether they want it or not, you know?
So I definitely push my limits physically, too, because I learned at camp that I can.
[00:20:40] Speaker B: Yep.
[00:20:40] Speaker C: I can definitely do more than I think I can. I've been so afraid with my fatigue that, oh, I can't walk that far. But, no, I can. I can push myself a little bit further, you know? And so I've been doing that, and there's something that happens at camp. It's. You don't know what you're doing the next day, so every day is just kind of like a surprise. And I I realized that I haven't been surprised in my life for a long time, since maybe I was a kid. And so how cool that was. To not know what was going on and then just be pleasantly surprised. So I try to do that with my family.
[00:21:20] Speaker B: Oh, that's amazing.
[00:21:23] Speaker C: And another thing that I've taken away from camp is that positive side of me that I lost.
I'm more positive.
Definitely see the brighter side.
[00:21:35] Speaker B: Yeah. And I think that's one thing that comes from being around other people in the same situation, laughing about the things. Because when we're in our own heads, that can be a very dark and downward spiraling place. Exactly. So I'm glad you have recovered the positivity. That's great.
Is there anything else you would want to share with someone listening, whether it's a survivor or a caregiver?
[00:21:59] Speaker C: Absolutely.
Skin cancer. Check yourself. If you find something that's changed or different or bleeding, call your dermatologist. Get checked.
Don't wait.
It's better not to.
In regards to mental health, talk to people.
Everybody around you loves you. They will listen if you just talk and find your own community. And unfortunately, I discovered that I have to find it myself. So, you know, if you're in need of help, go look, don't suffer anymore.
And then my last bit of advice is, epic experience is amazing and everybody needs to start supporting them because they are uplifting and saving lives every day.
[00:22:53] Speaker B: Well, thank you. I felt the same way, which is why I'm now doing this podcast so well. Thank you so much. I have one more very important question. Marshmallows over a campfire. Slow and steady or flaming crispy?
[00:23:08] Speaker C: Oh, man, I'm a slow and steady.
[00:23:10] Speaker B: Definitely keep it nice and evenly browned.
[00:23:15] Speaker C: Hot and gooey.
[00:23:16] Speaker B: Definitely.
Well, Jana Starshine, thank you so much for joining us today. We really appreciated having you with us and sharing what you learned about finding, seeking out that community and those opportunities to talk. I really appreciate you sharing that.
[00:23:32] Speaker C: Thank you. Thank you so much for having me.
[00:23:35] Speaker B: Oh, yes, it is a pleasure. So, until the next time we gather around the campfire, keep living beyond cancer.
Thank you for listening to this episode of campfires of Living Beyond Cancer. For more information about epic experience and our programs or to donate, please visit our
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