[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.
[00:01:07] Speaker B: Hello, everyone. This is Gail, aka Sunshine. Today we have Ted Rodencamp, aka Shady, joining us around the campfire. Welcome, Shady.
[00:01:20] Speaker C: Thank you. Thank you. It's great to be here.
[00:01:22] Speaker B: It is so great to have you. So, first, why don't you tell everyone who's listening a little bit about yourself.
[00:01:30] Speaker C: Well, I was born and raised in Baltimore and I moved all around the state.
Spent a lot of time in the Towson area just north of Baltimore, and spent the last about 20 years in Salisbury, Maryland, before moving to Colorado in 2009.
And, yeah, I worked in the printing industry for about 25 years and then decided to become a registered nurse.
It makes so much sense.
[00:02:03] Speaker B: Of course it does.
[00:02:05] Speaker C: Of course it does. Nursing, nursing, printing. They both ended.
[00:02:09] Speaker B: I see it.
[00:02:10] Speaker C: It's right there. So, yeah, natural progression.
So I became a registered nurse in two, 2002, and I'm also a registered cardiovascular basis specialist treating heart attacks.
[00:02:24] Speaker B: Oh, wow. I haven't. Well, now I'm going to segue into something that seems completely unrelated. But what is one fun fact that you have about yourself? Now, being a registered nurse from printing is fun, but do you have another one?
[00:02:39] Speaker C: Yeah. Don't be fooled by my shaved head. This used to be the most beautiful.
Full shoulder length locks of red hair.
Yeah, that used to. Used to get caught under my guitar strap as I put my guitar strap on, playing classic rock bands.
[00:03:02] Speaker B: Are we thinking carrot top red? Is this.
[00:03:05] Speaker C: Yep, yep. Along those lines. Yep. But, yeah, it was gorge.
[00:03:12] Speaker B: Wow.
I am surprised. Thank you for sharing that fun fact. I did not know that about you.
So the reason of course we're here is because we share something in common. Right? We both had cancer. So what is your diagnosis story? When were you diagnosed? How did you find out? What was your surgery treatment regiment?
[00:03:35] Speaker C: Yeah. Excuse me. So, interestingly, I went on a weight loss journey in 2019, and after losing a significant amount of weight, my throat was much thinner. And I'm shaving in the mirror one day and I was like, why is there a lump on the side of my neck?
And went to my primary who said, oh, crap. I was like, man, don't say that.
Don't tell me, oh, crap. We're really tight. This guy.
You can tell me a lot of things, but don't tell me, oh, crap. He said, you know what I'm thinking, right? I said, no, I don't know what you're thinking. That's why I'm here. He says, I'm thinking lymphoma. I was like, get out of here. Well, it's not lymphoma.
Turns out this is squamous cell cancer of the lymph nodes related to the hpv virus. Wow. So I was born in before the advent of the hpv vaccine, right? And I drew the lucky straw and got that virus, which manifests in males as lymph node cancer in the throat, and in females, it manifests as cervical cancer or throat cancer or throat cancer.
So I'm really a big advocate of trying to spread the word. Get your kids vaccinated, get your grandkids vaccinated. It has to be done when they're young. I think it's between seven and 17. I may be wrong.
[00:05:11] Speaker B: Yeah.
[00:05:12] Speaker C: But you have to be young to get it done.
So, yeah, it's a 100% protection against getting a kind of cancer that I got 100%.
[00:05:23] Speaker B: So did you know you had the virus? Let's just start there.
[00:05:27] Speaker C: No, I had no clue.
[00:05:29] Speaker B: So you found out about having the virus and about having cancer all at the same time. So what did they do next after?
[00:05:39] Speaker C: So they biopsied it, determined that it was cancer. Talked to me about surgery.
Going to be a big, giant surgery, and then we're going to see what's left and see if we need to do radiation and chemo. And I was in great resistance to chemotherapy because I've seen the effects of that on folks.
And the day, well, I saw the radiation oncologist first, and he's like, yeah, you know, we're gonna have to do this and that. 33, 33 rounds of radiation every day, five days a week, excluding weekends and holidays. Um, and then I went to see a medical oncologist who I. As we drove to the place, I was like, I don't care what they say, I'm not doing chemo.
And sitting in the office, he's like, I. I really hate to tell you this, but if you want to be sure to get this completely, you're going to need chemo. And I just lost it. Um, was really, really, really hard news for me.
[00:06:49] Speaker B: Yeah.
[00:06:50] Speaker C: And I will say that the chemo was absolutely the hardest part.
[00:06:54] Speaker B: Yeah.
[00:06:55] Speaker C: So I'm about two and a half years cancer free now.
[00:07:00] Speaker B: Congratulations.
[00:07:01] Speaker C: Yeah. Big surgery on my neck, partial pharyngectomy. The diagnosed or sorry, dissected the base of my tongue.
So my. My voice isn't what it was and my salivary saliva production isn't what it was, but on this side of the grass.
[00:07:22] Speaker B: Absolutely. So especially given your dread of and subsequent having, subsequently having to do chemo, how did that affect you physically? Mentally, emotionally, I mean, the whole thing, but particularly that, since that sounds like it was the hardest part.
[00:07:40] Speaker C: Yeah. The chemo just scared the crap out of me. My sister was an iv infusion nurse for 17 years and she asked me, what drug are they going to use? And I said, cisplatin. She said, cisplatin. Oh, I was like, great. Your answer. That's what I want to hear. Thank you very much for that.
[00:07:57] Speaker B: Again, not the. Not the reaction you were looking for.
[00:08:00] Speaker C: Not the reaction I was looking for, but made everything taste like metal and couldn't use like even a metal fork or spoon or anything.
All my water bottles were metal, so gotta change things up.
Yeah, it was just a lot of things going on. Well, from the surgery, I also had brachial plexus damage, so I lost some mobility of my right arm. So there's a lot of cancer around the 11th nerve. They took out 66 lymph nodes and seven of those were cancerous. And the primary tumor was 1.7 cm. So he did a lot of digging down there in my neck and damaged the brachial plexus in the process. But he warned me that that could be a possibility. So I have had about a year and a half of physical therapy and have regained some of the motion.
It's better, a lot better than it was originally, but yeah. So the mental aspect of chemo just scared me to death.
And fortunately, I found a lot of resources on the Internet. There were many options and I made use of those and that really helped me get, helped me get through.
[00:09:24] Speaker B: Is that how you found epic or was that actually.
[00:09:26] Speaker C: It is nothing. It is not, no. So actually, the surgical group that I used has a head neck cancer support group.
And this was immediately post Covid. And Mama Lou was one of the first live guests to come in.
They'd have different people. They had, you know, dentists and different people with different things. And Malalu came in and had a slide presentation and pamphlets and she's just ball energy. And it was, it looked amazing. And I'm like, whoa, who gets to go on these trips now when you.
[00:10:15] Speaker B: When you saw all the physical activities. Right. And knowing that you're hampered. Right. You don't have the range of motion you did.
[00:10:23] Speaker C: Right.
[00:10:24] Speaker B: Did you have hesitation about going.
[00:10:27] Speaker C: I sure did.
[00:10:28] Speaker B: Concern. Okay.
[00:10:29] Speaker C: I sure did.
Because the. The activities that were displayed were, you know, things like paddling a. Paddling a kayak.
[00:10:42] Speaker B: Right.
[00:10:43] Speaker C: And things that really required you to use your arms.
[00:10:46] Speaker B: Exactly.
[00:10:48] Speaker C: But I did great. And I think the physical therapy helped with all that.
Really paid off.
Yeah. So I started a pretty stout regimen of anti inflammatory supplements, and fortunately, I didn't have to be on any other medications afterwards.
Side note, I've had inflammatory bowel disease since 1985. Crohn's disease, to be specific. And post chemo.
[00:11:24] Speaker B: Oh, gosh.
[00:11:26] Speaker C: Post chemo, I don't have it anymore.
What?
[00:11:30] Speaker B: No way.
[00:11:31] Speaker C: No way. Yes way.
[00:11:34] Speaker B: Something positive came out of chemo.
[00:11:36] Speaker C: Something positive came out of chemo. So I was on an iv infusion every eight weeks for this Crohn's disease, and I had been on it for many, many years. Asymptomatic for 20 plus years, and insurance turned around in 21 and said, you don't have any symptoms. You don't need this drug anymore. And my GI went through crazy like, no, no, no one comes off this drug. No, no, no. Okay, well, this. This particular brand is the most expensive, so we need to put him on a biosimilar. Okay. So they reapplied for a biosimilar. No, he doesn't have any symptoms. He doesn't need that drug.
And chemo had suggested that Medon had suggested that I not be on that drug.
So I'm like, this is a couple of signs that are saying I shouldn't be on this drug, and it's really, really bad for you. Like you said, telephone book of things that could increase.
[00:12:53] Speaker B: Oh, God.
[00:12:54] Speaker C: So I said, you know what? I think I'm not gonna do that. And they were, like, losing their minds, the GI's office, and tried to convince me to go back on something, and I said, you know what? Let's just. Let's just not be on this for a while. See how it does. And I am three years away from that iv infusion with no symptoms.
[00:13:17] Speaker B: That is incredible.
[00:13:19] Speaker C: So the Crohn's disease is, interestingly, an autoimmune disease, and my theory is that it reset my immune system. Course, that's what chemo does, is wipes out your immune system.
[00:13:29] Speaker B: Right. And thankfully, you had one positive positive come from it.
[00:13:35] Speaker C: Indeed. Yep. Yep.
[00:13:38] Speaker D: I hope you enjoy this episode of our campfires with 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 hope stories of cancer with gratitude. Wingman, also known as Colin Farrow, executive director of EpiC Experience. Epic Experience is a registered 501 organization.
[00:14:22] Speaker B: So you went to camp, you were able to do the things that maybe you thought you weren't going to be able to.
What would you say are your biggest takeaways from that week?
[00:14:35] Speaker C: You know, I think the experience that I had with how I showed up, I made a decision on how I was going to show up to campus because I had bringing my energy, bringing my energy, being ultra positive, being willing to interact, willing to participate, willing to make friends, and really bring in my full self because I had this kind of vision of, oh, this is going to be some sitting around the campfire telling sad stories and crying and crying in your drink kind of thing.
[00:15:22] Speaker B: Right?
[00:15:22] Speaker C: I'm not having that. I'm not. That's not me.
But, yeah. So I. So I. So I showed up with my full self and it was on from, you know, the moment we got to camp, and it really paid off. So the biggest takeaway for me was when I bring my energy and my full self magic, things happen.
The positive feedback is just incredible versus being a wallflower, which I can tend to do, you know, sit back and watch it all happen and not necessarily participate in everything or really let people get to know me.
I took the opposite approach and was completely open and honest about everything in my life that anybody wanted to talk about and made lots of friends. And it was just a fabulous experience.
Excuse me.
[00:16:23] Speaker B: Well, I happened to volunteer at your camp, and I can speak from personal experience that we had many a fabulous conversation, and I saw your energy and heard your energy and appreciated it very much.
Thank you for bringing that. So now that you're home, how have you continued living that out?
[00:16:47] Speaker C: You know, I still, you know, I try to bring that energy to my life every day in doing what I do, you know, dealing with patients or going gatherings with friends, you know, bringing. Bringing my whole self. And, you know, part of that is being vulnerable in certain situations. Part of that is being upbeat when it might not otherwise be an upbeat situation.
You know, just a mindful approach to how I'm living my life, because I now have evidence that, you know, I get out of this deal. What I put into it, you know, it seems pretty. Pretty straightforward and simple, like, you ought to get that right. But I missed it for a big portion of my life, so I've learned that now, and camp really helped me to find that.
[00:17:44] Speaker B: That's awesome. So would you say that you are thriving now, and if so, what does that mean to you in terms of thriving and living beyond cancer?
[00:17:56] Speaker C: Um, so, yes, I believe I'm thriving. Um, I have, you know, gotten back to a lot of the hiking and biking that I once did, and, um, you know, really enjoy spending time with. With my daughter. I have one child. She's 25. For a child, she's the woman. Um.
Um, and just really enjoy spending time with my wife. We do date nights every week.
You know, we just appreciate each other so much more.
I appreciate the family and the gifts that I've been given so much more, but camp really helped me to get in touch with all that.
It's just really.
I can't say enough great things about the grave just being around and that and being around other people that have had cancer.
There's no replacement. Right. So folks that don't have. Don't have cancer. Never had cancer.
Oh, I'm sorry, you know?
[00:19:07] Speaker B: Right.
[00:19:07] Speaker C: But when you talk to share with another person who has had cancer, they get it at a whole completely different level, and there's this common thread that binds us in a different way.
So that was one of the huge benefits of being a camp as well, because up to that point, I had nobody else in my life that had cancer. I had lost two family members, a sister and brother in law, to cancer.
But I didn't understand.
I knew cancer as a death sentence period.
[00:19:41] Speaker B: Right.
[00:19:42] Speaker C: Both of the people that I knew that had it died. And, you know, the progress that's been made since then and, you know, finding out that there are many, many, many different kinds of cancer, and not all of them are lethal, and the ones that. Even the ones that are lethal have treatments, so.
[00:20:00] Speaker B: Exactly.
[00:20:01] Speaker C: Yeah.
[00:20:02] Speaker B: Well, and there you were at camp with a group of people who were all thriving together. Right? And so you're feeding off of each other and not, like you said, having the crying into your drink, you know, all the time moments. Sure, there may have been some of that, but you guys, you definitely lived life to the fullest together.
[00:20:23] Speaker C: Absolutely.
[00:20:24] Speaker B: Which was something awesome to see. Is there anything else that you would want to share with someone who's listening, either about how they might go about embracing this outlook or anything else that I haven't asked you.
[00:20:38] Speaker C: Well, I'll tell you. Um, I feel like, you know, I bought. I bought. I bought a particular car, and now I see them everywhere on the road. Right. You ever had that happen?
Uh, you know, you. You buy. You buy a particular model and you go, oh, there's one. And there's one.
[00:20:56] Speaker B: Right?
[00:20:57] Speaker C: And you never saw them before, but now that you have one, you go, oh, they're everywhere. And guess what? All these people in my life showing up with cancer, and I have three people in my life with the very same cancer that I had, all caused.
[00:21:15] Speaker B: By the HPV virus.
[00:21:16] Speaker C: All by the HPV virus.
One girl who did not get cervical cancer, she got throat cancer, and two men that both had throat cancer. And, you know, David is just in the process of recovering from surgery. He did radiation and chemo first, and then they did surgery, but he's in the process of recovering from surgery now and still hasn't started his saliva production and can't taste anything yet. All the good stuff that goes along with all the good, you know.
But I have been able to show him that there is light at the end of the tunnel.
[00:21:56] Speaker B: Exactly.
[00:21:57] Speaker C: Yeah. And interestingly, the girl was one of my yoga teachers, and she called me and said, would it be okay if I came to your house and we had a conversation? I was like, that wasn't the kind of relationship we had.
And she came and wanted to tell me that she had this cancer. That. That sounded like it was the same thing that I had. So I was able to be a resource for her as well.
So having this particular cancer and having all these people show up in my life is not an accident, I don't think.
[00:22:36] Speaker B: No.
[00:22:37] Speaker C: And I have been able to be a vehicle for some sort of positivity in other lives.
[00:22:45] Speaker B: Absolutely.
[00:22:47] Speaker C: That's. You know, there's a message of hope in all that, and that's really, really what the person with cancer needs, as I understand it. I need to know that there's some hope in all this. If you're going to tell me that this is terminal and it's just a matter of time, you know, that's pretty grim.
[00:23:07] Speaker B: So I would imagine, I'm going to guess that you showing up with your energy, showing up as your true self, thriving in the midst of this, made you a beacon almost, where these people, once they knew they had been diagnosed, they felt comfortable coming to you.
They could see, okay, he has this, and yet he's still thriving. He still has that energy, he still has that light, which is.
That's an amazing thing, because who knows? You know, that your yoga teacher and these other people, they may not have found someone that they could talk to, but here comes shady with his energy that you can share with them, which is amazing. Exactly.
That was our battle cry.
Is there any advice that you would give to someone who may be struggling, may not see the light at the end of the tunnel right now?
[00:24:11] Speaker C: Definitely search the Internet for resources. There are many, many out there, from healing touch therapy to horse therapy, to groups, support groups, you name it. There's so much out there, and it's. And it's none of it that I've found costs anything. It's free of charge.
If you're a hiker, there are hiking groups. If there are, you know, if you're a biker, there are biking groups. There are all the things, you know, that any. Anything that you're into, there is a group of people that are doing it.
I was.
I was less fortunate in that my cancer recovery was during COVID So I couldn't physically be and do and go, but I was able to do some distance things that really helped.
So, yeah, that was a big deal for me. However, now that we're moved past that a bit, we can. We can do these things live. And there's many, many things out there. You got to look for them, though. Interestingly, none of my providers had information about any kind of support system at all other than their support group. The head and neck cancer support group.
Radiation oncology didn't have it. Med oncology didn't have it. It was just. I had to find it myself. So look, so. So got there and look, so scour the Internet, search it different ways, you know, because I found that, you know, if I use different terms in there, I'd come up with different results.
[00:26:04] Speaker B: Yes, that is excellent advice. That in person, there's nothing. There's no substitute for it. Right. I mean, you know that firsthand since you had Covid and then you had after Covid.
[00:26:14] Speaker C: Right.
[00:26:14] Speaker B: Right. Well, now we have the all important question.
Marshmallows over a campfire, slow and steady or flamin crispy?
[00:26:25] Speaker C: You know, I used to like them slow and steady, but I think I'm flaming and crispy. Now you got a little.
[00:26:32] Speaker B: You gotta let on a patient. Now you got a flame and crispy. You gotta light it up, right?
[00:26:37] Speaker C: Get it on, man. Yep. Yep.
[00:26:40] Speaker B: Exactly.
Well, shady, thank you. Ted, thank you so much for joining us today. It has been an absolute pleasure.
[00:26:49] Speaker C: Thank you. It's been great. Thanks for having me on. I really appreciate the opportunity.
[00:26:54] Speaker B: Until the next time we gather around the campfire, keep living beyond cancer thank.
[00:27:04] Speaker E: 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.
[00:27:37] Speaker B: America police still are not family men's bright we will rise once again close.
