[00:00:00] Speaker A: Foreign.
[00:00:08] Speaker B: My name is Nancy Farrow, also known as Mama Lu, 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, you 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.
[00:01:09] Speaker A: Hello, everyone. This is Gail, AKA Sunshine. Today we have Eric Goss joining us around the campfire. Eric, thank you so much for being here.
[00:01:19] Speaker C: You're welcome. It's good to be here.
[00:01:22] Speaker A: So first, if you wouldn't mind telling me and the listeners a little bit about yourself, your background, where you're from, and please include one fun fact.
[00:01:31] Speaker C: Okay.
I grew up in Lexington, Massachusetts. I moved to the D.C. metro area in the mid-90s.
And let's see, I'm a graphic designer, and on the side, I play saxophone and piano. I took up oil painting about 10 years ago. And as for the fun fact, I was in the same high school class as Ethan Zone from survivor.
[00:02:06] Speaker A: Were you really?
[00:02:07] Speaker C: Yes. And we were diagnosed. We were both diagnosed with Hodgkin's, but 24 years apart.
[00:02:13] Speaker A: Oh, wow. Well, that is a fun fact. I'm going to ask another one. What is your favorite thing to paint now that you're doing oil paintings? Is it nature scenes, people?
[00:02:25] Speaker C: I think my. My go to is still lives or, sorry, landscapes. But I've been trying to focus on more on still lives because that's an area of weakness for me.
[00:02:36] Speaker A: So that is really cool. Yeah, I love it. Learning. We can always learn new things. That is really cool.
So what brings us together, of course, is cancer. So let's talk a little bit about your diagnosis. When were you diagnosed? What kind of cancer treatment, that whole thing?
[00:02:54] Speaker C: I was diagnosed on September 16, 1985, with Hodgkin's disease, now called Hodgkin's lymphoma, stage 3A.
The symptoms. I had coughing fits for a few months that were unexplained the July before the diagnosis.
And then around the time that I started sixth grade, my parents noticed that I was scratching my neck a lot.
I was having a lot of itching, and there was also a.
A growth that was starting at the base of my neck.
[00:03:38] Speaker A: Okay.
[00:03:39] Speaker C: Which had actually started underneath my rib cage.
But you didn't know.
[00:03:44] Speaker A: I mean, at this point, could you feel it or is it something more that your parents just kind of noticed you scratching and Messing with.
[00:03:51] Speaker C: I felt it, but I. I didn't associate that type of thing with cancer, especially not at that age.
[00:03:56] Speaker A: Not. Not at 11. Right.
[00:03:58] Speaker C: So. Yeah. So they took me to a pediatrician, and his words. His first words were, I don't know what this is, but I don't like it.
[00:04:07] Speaker A: Oh, gosh.
[00:04:10] Speaker C: And then they told me that they're going to take me to Children's Hospital in Boston, Massachusetts, and that's when I knew that it was serious.
The first thing they did was the biopsy, and that confirmed what they suspected.
And at that point, they were going to have to determine the staging to decide on the treatment plan. And this was in the age before PET scans. So they had to open me up, take out my spleen, my part of my liver, and some lymph nodes.
[00:04:59] Speaker A: Wow.
[00:05:01] Speaker C: And it was determined that I was stage 3A, because it had spread to my spleen, but it hadn't gotten to the bone marrow yet.
[00:05:13] Speaker A: So how big. I mean, how big a tumor? Do you remember? Or.
[00:05:18] Speaker C: It was node.
[00:05:19] Speaker A: Was it at that point?
[00:05:20] Speaker C: It was pretty large. It.
[00:05:21] Speaker A: Yeah.
[00:05:22] Speaker C: I mean, only felt it when it came up my rib cage, but it had started underneath.
[00:05:29] Speaker A: Wow.
[00:05:30] Speaker C: So, yes.
[00:05:33] Speaker A: And then treatment. What did they do?
[00:05:35] Speaker C: Yes. Well, they were debating on whether to do just radiation or radiation chemo, and it was decided they would do both.
And then there was the choice of. Between MOP and ABVD chemo protocols.
And it was actually unknown to me that they were debating that. It was between the doctors and my parents at the time.
My parents chose MOP because it's basically a choice between damaging your heart and lungs or damaging your fertility.
[00:06:12] Speaker A: Oh, my gosh.
[00:06:13] Speaker C: So mop, it attacked your fertility, but it spares your heart and lungs. So that's what they went with. And I think it was the right decision.
[00:06:23] Speaker A: Yeah. How long did it go on? How long were you actually in treatment?
[00:06:29] Speaker C: It was six months of chemotherapy, and then in between, it was three months of radiation. So three months. Three months and three months.
[00:06:42] Speaker A: Okay. And you're in sixth grade at this point. 11 years old, correct?
[00:06:46] Speaker C: Yes.
[00:06:47] Speaker A: I mean, how did that impact you physically as well as mentally, emotionally, and all the rest? I mean, that is. That's huge for someone that age.
[00:06:58] Speaker C: Physically, the.
The chemo, it caused severe nausea and mouth sores, and I.
I think I handled it pretty well, actually. I mean, I experienced it, but once it was done, I was able to go back to school the next day. So in other words, you'd have a.
[00:07:39] Speaker A: Treat and then you just go back to school?
[00:07:41] Speaker C: Yeah. It was every two weeks.
[00:07:43] Speaker A: Yeah. Okay.
[00:07:44] Speaker C: Yeah. I mean I had this idea the mindset of this two shall pass, you know.
[00:07:50] Speaker A: Yeah, yeah.
[00:07:54] Speaker C: And then the radiation, it was a, that was a lot, that was a different kind of thing. It was a lot more complicated because the treatment itself was painless.
It's like an X ray pretty much.
[00:08:07] Speaker A: Right.
[00:08:09] Speaker C: But for somebody who's 11 and still developing, having 7,000 cgy of radiation is going to have some long term effects.
[00:08:19] Speaker A: Yeah, definitely.
[00:08:20] Speaker C: That are far more noticeable than for somebody who's full, fully developed.
[00:08:27] Speaker A: Yeah.
[00:08:28] Speaker C: So. Yeah.
So I, I've had some disfigurement, especially to my mantle area.
And I also deal with radiation fibrosis now.
[00:08:42] Speaker A: And what is that exactly?
[00:08:44] Speaker C: It's stiffening of the muscles, especially during cold weather like now.
And there's also the potential for long term cardiac issues that come from having that much radiation directed at your heart. Yeah. So far I haven't experienced any, but it's kind of like waiting for the other shoe to drop.
[00:09:11] Speaker A: Yeah. And I know from being involved in EPIC that there are other survivors who have gone through something similar and are experiencing exactly what you are going through.
[00:09:21] Speaker C: Right.
[00:09:22] Speaker A: How so now it's been decades of survivorship. How, what has happened during that time in terms of again, how have you coped with it mentally, emotionally over those decades? Have you had a reoccurrence? That's also kind of a question I'm putting in there.
[00:09:40] Speaker C: It has not come back.
[00:09:41] Speaker A: That's good.
[00:09:42] Speaker C: I, I had a, a benign tumor in my lower spine, probably from the radiation, but that was removed without too much bother. So.
But I do get yearly follow ups.
[00:09:59] Speaker A: Yeah.
[00:10:01] Speaker C: With an oncologist and as well as an echocardiogram every five years.
[00:10:07] Speaker A: Yeah.
And this, we're doing a series on clinical trials, so. And that's why we have you with us. So how, what has your experience been with a clinical trial and how did it even come up again? We're talking decades.
[00:10:22] Speaker C: Yes.
[00:10:22] Speaker A: Since you're actually diagnosed. So how did that all come about?
[00:10:27] Speaker C: Well, I've never been able to, to find an effective way of coping with the late effects mentally.
[00:10:41] Speaker A: Yeah.
[00:10:43] Speaker C: I've, I've tried also types of therapies.
I've done cognitive behavioral therapy, eye movement desensitization, reprocessing.
And they might have had some short term effect, but eventually just it took me back to square one.
So I do go to the, the clinic where I go to follow ups. The Aquilino Cancer center in Rockville, Maryland had a psilocybin trial going on.
[00:11:27] Speaker A: And can you explain what that is, just in case?
[00:11:30] Speaker C: Okay, well, psilocybin, it's a, a psychedelic drug.
I know there was research done on it in the 1970s, but then that got put on hold due to the whole all that anti drug propaganda that Right. Came up and it's only gotten back on track recently where they've been holding clinical trials for people who, with trauma, ptsd, depression, etc.
So I, when I was introduced to this trial, I thought this is, this is going to be a great opportunity.
Nothing else has seemed to have had any long term effect and maybe this, maybe this might be the push that I need in order to, to cope with survivorship effectively.
[00:12:35] 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 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 501c3 organization.
[00:13:20] Speaker A: And so did it take you a while to kind of agree to go for it or was. Was it.
[00:13:27] Speaker C: No, I, I was y. Oh, I agree to it immediately. Now you have to go through a whole screening process of. That went on for several weeks, I think, or actually, you know, several months now that I think about it, where you go in for blood work and they, they also have questionnaires that you fill out where they screen you for like depression and any thoughts of suicide.
If you mention any suicidal thoughts, you're immediately screened out because although psilocybin, it's not going to create suicidal feelings, it might prompt somebody to act. So they've had. Yeah, yeah.
[00:14:21] Speaker A: So you went through all that and now do you go in to the clinic, what, on a weekly basis? Are you still involved? And has it been effective?
[00:14:33] Speaker C: It has been effective.
I, I don't go on a weekly basis, but there were. I was part of a cohort of six patients at various points in treatment and we met as a group a number of times before the dosing and then after the experience, we continue to stay in touch monthly. There's a facilitator who does a virtual group.
So.
[00:15:11] Speaker A: And how has it helped? I mean, how would you say? And, and for you particularly, this you even looked at this because of the mental strain of dealing with survivorship for decades. Right?
[00:15:27] Speaker C: Yeah.
[00:15:27] Speaker A: How has it, how has it helped you? I don't know, change your thought patterns or talk to yourself differently or things like that?
[00:15:38] Speaker C: I'll make an analogy. It's like, imagine a hiking trail that's gotten completely overgrown and the psilocybin is like a.
A lawnmower or a.
Like a sickle that. Where you cut through these fines and brambles and allows you. And allow yourself to access the trail again.
And when you cannot cut through those things gives you detours where distressing thoughts when they, when they come up, you can find a way around them or you don't have to follow them wherever they go.
[00:16:37] Speaker A: Right.
Do you feel like you have options now that you didn't have before, mentally, at least in, in ways to work around thoughts and things like that?
[00:16:47] Speaker C: Yes, it. It's definitely been a long term improvement.
I know there's a sense of that there's more to me than the cancer now that I'm not as.
[00:17:04] Speaker A: Yeah.
[00:17:05] Speaker C: Tangled up in it as I used to be. Um, and actually something that I've been able to do since then is become a mentor to newly diagnosed patients through the Leukemia and Lymphoma Society.
[00:17:20] Speaker A: Oh, that's great.
[00:17:23] Speaker C: I think before the dosing, I'm not sure I would have been able to handle that. Yeah, I, I had this, this unhelpful coping mechanisms where I would compare myself to other people who had gone through similar things and wonder why I couldn't have had their experience or why I wasn't able to cope with it as well as they did.
[00:17:49] Speaker A: Yeah.
[00:17:50] Speaker C: Now those thoughts may come up, but they're not as.
They're not as easy to push aside.
They're much easier to push aside.
[00:18:02] Speaker A: Yeah. Yeah. Well. And I imagine that gives you. It's like opened up space for you to now help these people who are in the same position. Do you?
[00:18:11] Speaker C: Yes.
[00:18:12] Speaker A: Like, when you're mentoring, is it, Is it often young people like you were or anyone who's been diagnosed with Hodgkin's something, you know, that you are.
[00:18:22] Speaker C: Well, most people with that diagnosis, it's usually in young adulthood. It's very rare for it to be at age 11. So it has been mostly young adults.
[00:18:33] Speaker A: Yeah, young adults. Okay.
How long, I guess. How long did it take on this clinical trial for you to get to a place where you felt like, okay, I'm in a place where I can now give back by doing the mentoring?
[00:18:49] Speaker C: Well, the clinical trial was it was actually a day long event where you, you're administered 25 milligrams of the psilocybin and then you're, you're given a room where you wear an eye mask and you have headphones and there's a soundtrack that is queued up to correspond with how the psilocybin works.
[00:19:26] Speaker A: Interesting.
[00:19:28] Speaker C: So it's, it's sort of like a deep cleaning in a way. It's. It's very intense.
[00:19:34] Speaker A: Yeah.
[00:19:36] Speaker C: There are moments of euphoria and there are also moments where it feels very abrasive.
But it's, it's, it's hard to, to describe you. You had to be there anyway.
But.
[00:19:58] Speaker A: So it was a one day, it.
[00:20:00] Speaker C: Was a one day thing. Yeah.
[00:20:02] Speaker A: Okay.
And how long after that one day, then that did you really start feeling like you could hack away those vines and the things. So that the, the path was clearer to the point where you could actually mentor others. Which is amazing. Which is. That's just great.
[00:20:19] Speaker C: I noticed the benefits immediately, really, upon the end of it. Yes.
[00:20:24] Speaker A: That's incredible.
[00:20:25] Speaker C: Able to push, push away those distressing thoughts.
[00:20:30] Speaker A: And, and since then. So how long ago was this then?
[00:20:33] Speaker C: This was April of 2021. So it's been.
[00:20:37] Speaker A: So we're going on four years.
[00:20:39] Speaker C: Almost four years. Yes.
[00:20:40] Speaker A: You've been able to continue that, that, to find that it's much easier to push those thoughts away.
[00:20:47] Speaker C: It is. I mean it. I don't think the effects are quite as strong as they were early on.
It. I know there are future follow up studies in the works, so I'm also considering applying to those. But I do notice in general there's. I definitely have a, a better outlook.
[00:21:13] Speaker A: That's great. Wow. Is there anything you wish you would have known beforehand?
[00:21:23] Speaker C: Let's see.
I took some notes here.
I, I don't think there's anything I wish I had known. I think it helps to, to go into that experience with some, some ambivalence. I think that's healthy.
[00:21:51] Speaker A: Yeah.
[00:21:52] Speaker C: But. Yeah, so.
[00:21:55] Speaker A: And open mindedness, I would imagine too.
[00:22:00] Speaker C: Yeah.
[00:22:01] Speaker A: Yeah.
[00:22:02] Speaker C: I wouldn't say it's best not to look at it as a magic bullet. It's not going to solve your problems, but it will give you tools to cope with problems as they come up.
[00:22:13] Speaker A: Excellent. That's a great way to look at it. Is there anyone, anything else that you would want to share with someone listening who might be considering a similar trial or someone who's gone through cancer like you have?
[00:22:33] Speaker C: I would suggest that it's, it's something to look into for anyone who's dealing with lingering psychological issues after the treatment may not help everyone to the same extent, but it probably isn't going to hurt.
And also, as a general piece of advice, I think something that would have helped me in treatment was not to have that worry about being a burden to others.
I think if I was able to put that aside, that would have helped me to focus more on myself and in getting better.
[00:23:28] Speaker A: Yeah. I mean, if you could go back, how do you think you could have done that? Even as. Whether as an 11 year old or older, I'm wondering if you've come up with ways that you, you could have done it differently. Obviously, we can't go back, but I'm wondering.
[00:23:43] Speaker C: At that point, I was naive compared to how I am now. Yeah.
I don't know how I could have done it any differently. I mean, obviously now I have a much wider view of the whole thing.
[00:24:05] Speaker A: Yeah.
Yeah, that is, that's a great lesson, though. I can think it's easy for, for anyone, especially a child, but anyone to feel like a burden. I mean, you can see, you can probably see the impact it's having on your parents, or you could just as.
[00:24:22] Speaker C: Right.
[00:24:23] Speaker A: You know, another survivor going through treatment can see the impact it's having on their loved ones or their caregivers. But that is an excellent piece of advice for someone listening to. Not, not feel like you're being a burden. You're, you're, you're going through it. Right. I mean, it is what it is. Mm.
Well, Eric, thank you.
Thank you for sharing all of this. This is interesting, educational to me and really encouraging that you were able to come out of that and now can be in a place to mentor others who need someone like you, who's been through it. I think that's fantastic.
[00:25:04] Speaker C: Absolutely.
[00:25:06] Speaker A: And then I always end by asking one kind of fun question to. And on a lighter note, marshmallows over a campfire. Slow and steady or flame and crispy?
[00:25:19] Speaker C: I'm trying to think back to when I didn't have to watch my blood glucose levels.
I would say slow and steady.
[00:25:27] Speaker A: Slow and steady. Get it nice and golden brown? Yeah.
[00:25:30] Speaker C: Right.
[00:25:31] Speaker A: Very good, very good. Well, Eric, thank you so much. I really appreciate your vulnerability, your vulnerability, and you're willing to talk to us about these things. I'm sure you're. You've really impacted someone out there.
[00:25:44] Speaker C: Thank you. It's good to be here.
[00:25:46] Speaker A: And to everyone else, until the next time we gather around the campfire, keep living beyond cancer.
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[00:26:26] Speaker C: Valentine's Dance through the Night with the ghosts of America Mind please Still I mean bright woke we will rise once again.
