[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. Welcome to an episode of keeping it real on the Campfires of Hope podcast, where we'll dig into the mental and emotional highs and lows of cancer survivorship. Today we are keeping it real with Carolyn Thomas. Carolyn, thank you so much for joining us.
[00:01:25] Speaker C: Thank you for having me.
[00:01:26] Speaker B: So, first, I know you because I had the privilege of volunteering at your camp, but why don't you tell our listeners a little bit about yourself?
[00:01:34] Speaker C: So my name is Carolyn, and I am in my early sixties. I have two sons, ages 25 and 22, and I worked as a therapist in private practice and other settings for over 30 years.
I have three extremely supportive siblings, two brothers and one sister, and a very supportive dog, a shih tzu named Wyatt.
[00:02:01] Speaker B: That is very important. I forgot to ask you to tell us one fun fact about yourself.
[00:02:06] Speaker C: My fun fact is that when I lived in Chicago in the nineties, I was on rollerblade patrol on the lakefront.
[00:02:18] Speaker B: Roller, please tell me what roller blade patrol is. That is a tongue twister.
[00:02:23] Speaker C: Yes. So if you've ever been to Chicago, walking along the lakefront, there's a number of areas that don't have any kind of guardrails between the water and the cement. So if you're a new rollerblader, you could very easily end up in deep water, right?
[00:02:43] Speaker B: Literally.
[00:02:44] Speaker C: Literally. Or if you don't know how to stop or some of the other things. So there were a number of us who actually worked with the police department, and we were out there helping people learn how to stop and do other kinds of things and not be skating out of control.
[00:03:00] Speaker B: I have a lot of questions about that, but we're going to move on. That is fascinating. I love it. So give us a cancer brief. Tell us when you were diagnosed, what your diagnosis was. Treatments, surgeries, all that kind of stuff.
[00:03:13] Speaker C: Okay. I was working at a Boston hospital, and I started having utis and went on many different doses of antibiotics, and nothing was making them go away. So my primary care had referred me to a urologist, and I had gone to see her a number of times. And she was kind of baffled working at the hospital. She said, why don't you just come over for a cysto, which is where they put a camera in your bladder, to just look and see what's going on. So she scheduled it, or we scheduled it for my lunch hour. I went in there and they put the bladder. Or they put the camera. Sorry, into your bladder. And I was looking at the screen, and she was looking at the screen, and then she was like, that's nuts. And I saw that. But I know enough, having had worked in cancer for many years, I saw what I saw. She saw what she saw. And she said, I'm going to go get the oncologist. And I'm like, can you just, like, I was sobbing. Can you just, like, hold me? Like, don't go get the oncologist right now? Like, I was in shock anyway, so she's like, well, you're going to. What's the word? Something. My field. Infect. My field, right? Because she's got to come back, and she's got the camera in me, and I'm kind of lying there, right?
So the oncologist comes in, and he's like, yep, that's cancer. And, you know, even though I'd worked in the oncology field for a long time, bladder cancer was not really something I was that familiar with. So basically what happened was it was confirmed, and I was close to hysterical, and I was calling each of my siblings and couldn't get a hold of anyone.
And then I also called my boss, and he came over, walked over and stayed with me until we got some things figured out.
And.
Yeah, so that's sort of.
[00:05:27] Speaker B: And how long ago was this?
[00:05:29] Speaker C: I was diagnosed on October 13 of 2022.
[00:05:35] Speaker B: Gosh.
[00:05:36] Speaker C: And the thing. Let me just speak. Yeah, go ahead.
The thing about bladder cancer is you can't find out anything about the staging or anything until they go in to take the cancer out.
So if it's non muscle invasive, that's a very good thing. If it's muscle invasive, then it's a whole other.
[00:06:00] Speaker B: And yours.
[00:06:00] Speaker C: Follow wax, non muscle invasive. Although that was not what I was told in the very beginning because it was Covid. We had, the nurse that was covering the post op had never worked in there, and she said, your tumors were very large, and there was more than one at that point. And so this is. And I ended up with a catheter. So I went home with a catheter without expecting a catheter.
And also because of the drugs, when they're telling you stuff. I thought that I had invasive at that point because I didn't know that it was non invasive till that evening, which I will cover when I talk about some of the other stuff.
[00:06:47] Speaker B: Yeah, well, you mentioned that you have two sons. I'm curious how that went when you told them. So at the time, they would have been in their twenties still, right?
[00:06:58] Speaker C: Yep. One was 20 and the other one was 23.
[00:07:03] Speaker B: So how did you go about telling them and when in the scheme of all. Cause it sounds like that first day was a nightmare.
[00:07:10] Speaker C: Yes, the first day was a nightmare.
I was supposed to go back to work. Obviously, I didn't do that.
Drove home. My sister came over. She was fantastic. And we had a little bit of wine to kind of chill out, as one should.
And then I called my loved ones. I mean, I've been trying to call my family, like, the whole. Not my. Not my kids, because.
[00:07:43] Speaker B: Right.
[00:07:43] Speaker C: I wanted to talk to them in the evening.
And my one son, who's in school, in college, I wanted to wait until much later because there's a three hour time change and other things, and I was waiting for my other son to get home from work, so.
But I still think for like, a good twelve to 15 hours, I was just in shock and sobbing and then.
Okay. And then sobbing and then. Okay. And so I first talked to my eldest son, and I think it was somewhat surreal for him and still very surreal for me.
I did know at that point that my surgery was going to be on November 28, which is. And the first one in the morning, I think I got vip status for being employed in the hospital. Yeah. So it was the Monday after Thanksgiving, so they changed their plans to come to me for Thanksgiving.
[00:08:53] Speaker B: Perfect. Yeah.
[00:08:55] Speaker C: So that they. My sons took me in for my surgery and were there and everything. So.
[00:09:01] Speaker B: So when you told. So you told your oldest son, is he the one who lives in California or the one.
[00:09:05] Speaker C: He lives in Alabama?
[00:09:06] Speaker B: He lives in Alison. Okay, so did.
Did you feel the. I mean, you're the mom, right.
[00:09:13] Speaker C: Okay, well, let me. Yeah. Go some of this out. So, you know, I've always seen my role as a mom to be transparent with my kids, but my ultimate goal is to protect them.
[00:09:25] Speaker B: Yeah. Yeah.
[00:09:27] Speaker C: And there was nothing I could do to protect them in this situation. And that was by far and still is one of the hardest things. I think I feel like they had to grow up overnight.
[00:09:44] Speaker B: Yeah.
[00:09:46] Speaker C: And that my role was changing.
I also remember one of the things that came into my mind fairly early after getting my diagnosis, and this has stayed with me, bucket list starts now.
[00:09:59] Speaker B: Yeah.
[00:10:02] Speaker C: You know, anything particular with bucket list starts now?
Well, the other thing that was interesting is that was my last day at work because I had also been doing one other thing as well as my private practice, and I had to give up something. So your last day of work, when you are given a diagnosis like this, it's like you have to co bring your benefits. Like, your options are off the table.
But that just seemed so trivial at that moment. Like, at least I have insurance. It's where I work.
I have grown to absolutely love my oncologist, and my urologist came and talked to me at my first visit, and she was like, I need to say something to you. Like, if I had any idea that you had cancer, I would have never had you come over like that. I prepare my patients for stuff like that.
[00:11:02] Speaker B: Yeah.
[00:11:03] Speaker C: And I said to her, so how often does this happen that, you know, and she's like, in 23 years, you're my first patient.
And bladder cancer is fairly rare in females.
[00:11:16] Speaker B: Yeah.
Anyway, so telling your youngest son, was there anything that stood out from that? Did you have to wait till the next day because of the time, no later for him?
[00:11:30] Speaker C: Yeah, I told him about that night, but he was also in the middle of, like, not finals, but testing and stuff like that. Yeah, but the more that I sat with them, like, it was, the quicker I wanted to get rid of. Like, it was like every time I told somebody, it was upsetting.
[00:11:50] Speaker B: Yeah.
[00:11:51] Speaker C: And I didn't have a lot of answers at that point, but by the same token, it diluted it a little bit.
[00:11:56] Speaker B: It got easier. You mean because.
[00:11:58] Speaker C: Yeah, yeah, in a sense, yeah, because it's like, okay, I have another person who's sort of on my team or who can share this with me and.
But, you know, also because I had worked for years in the cancer industry, I had also worked at the cancer Information services, which is through the affiliated with the National Institute of Health, where I'm getting confused right now. But anyway, so I know what sites to go on.
[00:12:25] Speaker B: Right.
[00:12:26] Speaker C: But that doesn't mean you put in bladder cancer and the other sites don't, you know, pop up. You start to go down the rabbit hole. So.
[00:12:35] Speaker B: Yeah, that can be frightening, discouraging. Yeah.
Did your kids go down that rabbit hole? Did they start researching? How did. What did they do? Okay, so now you've told them.
[00:12:48] Speaker C: So now I've told them. And I've also told them I'm not going to know anything until I have this surgery.
[00:12:54] Speaker B: Right.
[00:12:55] Speaker C: So I think there was a bit of a heaviness around the Thanksgiving, you know, and for me, it was one of those things where I had heard some of the patients that I'd worked with before say they just want to get it out. Like, yeah, that was exactly how I felt. Like, I want this cancer out of my system. Like, this can't come soon enough.
[00:13:25] Speaker B: Yeah.
[00:13:26] 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 501 organization.
[00:14:11] Speaker B: So did you have an idea what might lie on the other side? So at this point, you know, it's not invasive?
[00:14:18] Speaker C: No, I don't know until the.
[00:14:19] Speaker B: Oh, you don't? You didn't know for sure?
I thought you had found that. No. Okay.
[00:14:24] Speaker C: So no, there's no way to know.
[00:14:26] Speaker B: There's no way to know. Okay.
[00:14:28] Speaker C: You know, I don't know if I'm going to go in and who knows? Right.
[00:14:32] Speaker B: Okay.
So. So afterwards, it could have been any number of outcomes. So there is that. Yes. I want to get it out. But you don't know what's on the other side in terms of treatment or anything at that point. Right, exactly. So there's that.
That unknown that's just hanging there. Yes.
[00:14:56] Speaker C: And it's Covid. And no one can go in with you.
[00:15:00] Speaker B: Oh, gosh.
So your kids were not able to actually go in even though they stayed, obviously.
[00:15:07] Speaker C: Well, they went into the waiting room, but they can't go any further than that.
[00:15:11] Speaker B: Oh, God.
[00:15:12] Speaker C: And then they went out to the car to wait because my nurse was from neurology and she was, you know, stepping in for someone else and there was a nursing shortage and there was this and there was that.
And when I kind of came to in the room after surgery, she said, your tumors were really large and you had twos, big ones. And, you know, you've got a catheter in now because of how big they were. And I'm just like, uh huh, uh huh, uh huh. Okay, great. And then she proceeded to walk me to the car where my kids were.
And you're still in LA? La land and gonna be taking opioids for the next 24 hours.
[00:16:02] Speaker B: Right.
[00:16:04] Speaker C: Whatever happened or whatever I heard was not good news. So it was.
It was a tough day. And in speaking to my older son after the fact, when we thought it was a bad prognosis, originally, he told me that that day just felt like, hollow for him.
But what was interesting is there is a bit of a fighter in me. And so that night, I called the number. I think I was a little clearer at that point.
The drugs that cleared my system. And I called and I got this resident, and I said, this is what I've been told. And da da da da da. And I was asking about some meds, but I was also saying, could you read me the results of what the pathology report is?
And he said, oh, yeah, it's non muscle invasive. So then I started screaming.
I was so happy that I was crying. And he was so apologetic, you know, I'm sorry that that's how you had learned and da da da da da. So, anyway, I was able to tell my kids, and I think that day, that was just such a roller coaster. Oh, I bet better because of that.
[00:17:26] Speaker B: Well, absolutely. What in that. So in the weeks and months after, were your kids their, I guess, caregiving?
What was it like seeing you?
[00:17:46] Speaker C: Yeah. So, you know, I come home, we still think things are not a good outcome. And I've got this. Catherine, no one trained me how to use catheter. And I've got a small one and I've got a big one. The big one is on me, and I'm going to change the small one. But I. First of all, I'm too high.
[00:18:06] Speaker B: Yeah.
[00:18:07] Speaker C: Freaked out and all the things. Well, one of my sons came in and really helped me, so they stepped up to the plate in the most unbelievable ways, you know, in everything. As a mom, you want to protect your kids from. Well, all that went out the window, you know? So as my one son says, it was chaotic and it was humbling, and it was chaotic, and it was humbling for all three of us.
[00:18:37] Speaker B: So have you talked to either of them in the years since? Because this was over two years ago, right.
[00:18:45] Speaker C: No.
[00:18:45] Speaker B: Coming up onto your. Because it was October. Okay.
[00:18:48] Speaker C: Yeah.
[00:18:49] Speaker B: Have they had any other reflections on that time? Humbling and chaotic.
[00:18:54] Speaker C: Humbling and chaotic is what one of them said. The other one said that I've always been transparent. And so then in my being transparent, that helped them a lot.
[00:19:04] Speaker B: Oh, wow.
And transparent in terms of how you're feeling, asking for help.
[00:19:10] Speaker C: Oh, I don't know, about asking for help, but transparent in terms of how I'm feeling, how what I see my prognosis as, you know, so.
So I also grew up with a dad who was diagnosed with Ms at a very young age, so this doesn't really even compare. So they've also grown up with a grandfather with issues and then also their paternal grandfather, same thing. So they're used to being. And my. My brother also was born with one leg, so, you know, it's kind of something that my kids have sort of grown up with. So I don't think that they're, you know, completely freaked out by people having something going on health wise. I do think that I've also kind of always been open about death and stuff, so it's not like, because I, you know, working as I have, and I've worked in liver transplant, I've worked with cancer patients.
And so, you know, I will say people, you know, we're all going to die, and it's just part of life. So.
But thinking about that, I remember that there was one day that I don't know what was going on for me, but I remember thinking, like, bargaining. Like, I just want to see, you know, my kids get married. I want to see them have a child. I want to see this, I want to see that.
And if I can get to there, you know, I don't think like that right now.
[00:21:02] Speaker B: Yeah.
[00:21:03] Speaker C: But I have to have a scope every three months, and if.
Yeah, then I have one next week, and if comes back, then I'm back into surgery, back through the treatment. And I also did have as one of the 1% that had BCG, which is like the TB drug, which is what they use as an immunotherapy drug. It can cause reactive arthritis if it gets out of your system. So mine got into my Achilles heel. I think you both from some of the things we did together.
[00:21:35] Speaker B: Yeah.
[00:21:36] Speaker C: And so because that happened, my doctors put the kibosh on my going to spend my youngest 21st birthday with him.
He wouldn't let me fly. So it's like, okay, yeah, I mean.
[00:21:51] Speaker B: We talk about that. That when you're done, you're not really done. Cancer continues to impact your life in ways like that. That's very unfortunate.
[00:22:01] Speaker C: But cancer does. I mean, but my treatment does continue for another year and a half, so.
[00:22:05] Speaker B: It'S not done enough. Yeah. And you're getting scopes every three months. So there's that.
[00:22:11] Speaker C: There's that, too. Right. And this could be real World cups or too.
[00:22:17] Speaker B: Yeah. Oh, for sure.
So what have you learned from talking to your kids about it, seeing how they kind of process it and went through it? Do you have any advice for other parents who are in the position of telling their kids and helping them go through that whole process.
[00:22:38] Speaker C: You know, thinking about it also from the therapy perspective, I think that when any dynamic changes within a family, everybody feels it. Right?
[00:22:46] Speaker B: Yeah. Yeah.
[00:22:47] Speaker C: So if I kept it, it would have influenced everything as well. Right. If I didn't speak, if I didn't say something.
So for me, being open and honest has been easier. And I think that's the feedback I did get.
[00:23:06] Speaker B: Exactly.
[00:23:07] Speaker C: Being transparent has been the most helpful thing I will send them, or in the beginning, I did send them information on bladder cancer, and I also did get to celebrate with them when we got the really good news that night. So.
Yeah. And I.
I don't think I've ever been someone who didn't sort of attempt to live life to the fullest when I see it in front of me. But I think now it's like, bucket list is now.
[00:23:43] Speaker B: That's awesome. So at your.
At your lowest points, how were you able to find your own strength, you know, to keep going, and were you able to help your kids find theirs, or did you kind of let them find it on their own?
[00:24:03] Speaker C: I have this saying, which is, it doesn't happen that often, but I will say I'm unfit for human contact today. And usually it's because something's going on and I can't figure out why I'm in a crappy mood or what I'm upset about. So it's like. So that no one gets injured emotionally.
[00:24:27] Speaker B: Exactly. Exactly.
[00:24:29] Speaker C: I'm unfit for human contact, and I'll try to. Try to figure it out.
I think that my kids know that I will tell the truth, and so I think that that is helpful for them, that if anything is changing or if I need something, I will ask.
I think you need to be in a place. The person who's diagnosed needs to be in a place where they can at least identify what they're willing to share and when they need to stop so that they have some boundaries and parameters around what is enough for them. And I'm not certain that that's the first day that you find out.
[00:25:27] Speaker B: Yeah.
[00:25:28] Speaker C: You know, my kids are older, so I didn't have to think about, really, their age or other things. I was also very lucky in that my surgery was the day that everyone was back from thanksgiving. Right. So.
[00:25:40] Speaker B: Exactly.
[00:25:42] Speaker C: And I did. They aren't living with me, so I didn't have to change my living situation or anything else to have helped. So I don't know if that answers the question.
[00:25:55] Speaker B: Well, yeah, I mean, it's. Your kids probably had a modicum of peace because they knew you would say, like, they could go through their day to day, whatever else they had going on after that point because they trusted you to tell them when something else happened.
Right. I think that's huge. That gives them a. It gives them that ability to. Nothing put it behind them because obviously you're their mom and they're going to keep thinking about you and wondering what's going on, but at the same time, they can trust that you're going to let them know what they really need to know and when something's changed or whatever, which I think is huge.
[00:26:33] Speaker C: Yeah. I think also there's a part of me that's like, you know, if they're. If they have the opportunity to go do something themselves, go like, yeah, life is short and do whatever you can and enjoy it because you never know.
[00:26:52] Speaker B: Well, and you're modeling that bucket list right there. Right. That's exactly. So they're there. You're encouraging them to do that now for that very reason, which is great.
[00:27:02] Speaker C: And I think I got some of that also from my dad's situation, you know, because that's how he lived his life, because we didn't know how long we were going to have him. So. Yeah, he didn't know how long he was going to be here or what shape.
So.
[00:27:16] Speaker B: For sure. Well, is there anything else that I haven't specifically asked you that you would want to share with someone listening, whether it's a parent or a child, I.
[00:27:27] Speaker C: Think I would want to say that I was. I was terrified of telling my children and I was terrified of not telling my children. Like, there was no easy answer.
Like, if I didn't tell them, it was going to eat away at me, and if I told them, they were going to feel terrible, and there was.
[00:27:47] Speaker B: Going to be feeling terrible no matter what. Right.
And ultimately, it sounds like it has been for the better in your relationship, and it was the smart thing to do was to tell them when you did.
[00:28:02] Speaker C: You'd have to ask them.
[00:28:04] Speaker B: This is true. Maybe we'll have to get them on there.
[00:28:09] Speaker C: I can ask. I'm just looking through my notes to see if there was anything else.
The one thing I did want to add was because I've been in the cancer arena for a long time and this is really emotional for me. Other people's stories that I've heard for years and years and years and years have really helped me. But there is one situation that is completely heartbreaking.
So, in 2017, my cousin, who's ten months younger than I am, was diagnosed with stage four breast cancer, and she died a year later.
[00:28:53] Speaker B: Yeah.
[00:28:54] Speaker C: And so how do you know? Like, life is precious. None of us knows.
And so that feels unfair.
[00:29:05] Speaker B: Yeah.
[00:29:06] Speaker C: But none of this is about fairness, so.
[00:29:11] Speaker B: Yeah.
And to the point. You've already made the other reason to have that bucket list. Because you don't know.
[00:29:20] Speaker C: No, you don't know. You don't know.
So live large.
[00:29:26] Speaker B: Yep.
Well, Carolyn, thank you so much for keeping it real with us. I really appreciate your vulnerability and for talking about your kids and that whole situation.
[00:29:38] Speaker C: Thank you for having me, sunshine.
[00:29:42] Speaker B: You are welcome. Thank you all for keeping it real with us. Until the next time we gather around the campfire, keep living beyond cancer.
[00:29:56] Speaker E: 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.
[00:30:25] Speaker F: Five times it can go. Miracles still on our side. The family will rise once again.
Close.
