The Uncharted Waters: Understanding the Mental and Emotional Storm of Cancer

00:00 SPEAKER_02 This is The Light Inside. I'm Jeffrey Biesecker. It's cancer. A phrase over 19.3 million of us will utter to ourselves globally each year. By the year 2040, that number is projected to rise to a staggering 28 million. Beginning as a journey that often resembles an emotional roller coaster hurling through the realms of uncertainty, imagine the heart-wrenching agony that stems from the vast unknown, where each moment brings a flurry of questions with no certain answers. The suspension of time, where days blend into nights, and hopes cling to the fragile threads of medical prognosis. In this deeply insightful episode of The Light Inside, we delve into the labyrinthian experience of battling cancer. We'll confront the variables that defy our comprehension. The journey through cancer treatment is not only a clash with a physical ailment, but also a confrontation with our mortality. When met with this harbinger, we confront the very real and pertinent likelihood of our fate, forcing us to confront existential questions and redefine our priorities. Join us as we navigate through the emotional whirlwind, share stories of resilience, and uncover the strength that arises from embracing life amidst the chaos of uncertainty. Tune in to find out how to navigate the uncharted waters of the emotional journey of cancer. When we return to The Light Inside. A cancer diagnosis strikes with the force of an emotional lightning bolt, shattering the familiar and plunging individuals into a tumultuous journey. The gradual unfurling of the treatment's intricate mysteries introduces a relentless storm of mental and emotional chaos, the complexities of medical interventions, and the profound confrontation with mortality entwined. Demanding an unparalleled resilience to navigate the overwhelming tempest. This is a fate our guest Jeffrey Boethman knows all too well. Jeff, you've battled the battle with cancer, the unexpected moment of truth that often pops up when we get that diagnosis, when family members get that diagnosis. As a society, we're almost to the point where we're programmed to expect it in some regards. Today I'd like to look at your journey and your experience with cancer, specifically with leukemia. Can you share with us a bit about your story and how the long voyage through these uncharted waters shaped your outlook on treatment?

02:36 SPEAKER_01 Yeah, so my diagnosis took a long time and it was a pretty innocuous start. I had a small tumor growing in the back of my leg. I went to my general practitioner. He actually sent me into the cancer hospital, which I guess was a red flag at the time. They struggled with the diagnosis probably for, I don't know, six weeks, where I had a couple of different surgeries and a couple of different, they call them needle aspirations to try and figure out what was in there. They finally did after my second surgery, and I'll remember it was the day before Thanksgiving, and my wife and I were there and the doctor comes back. He's like, well, we know what it is now finally. It's T cell lymphoma, which meant that having the tumor removed was not the end of the journey, but really just the start. As a blood cancer, you have to have some pretty intense chemo to get rid of it. Went through inpatient chemo, had some extra medical time because of infections and complications and whatnot. Those were four days at a time inpatient. I had a PIC line. It's called the PIC line, like a port. I was connected to that 24-7 for four days. I did three rounds of that. After that, I had radiation. After that, they sent me on my way. They checked me up every month and then three months. That's the journey of it. I think for me, the question always comes up, why do you write the book? And I've told people, I'm sure my seventh grade English teacher is mortified that I wrote anything because it's really not what I do. But it was so frustrating to me on a lot of levels. One, just how can I help people when you're walking around your floor, cancer floor in the middle of the night and you just see people just terrible condition, crying or just staring out the window or staring into their wall. It's like, okay, what can I do? Certainly, I don't have a medical background or anything. I'm not going to go and solve this in a lab anytime soon. But the other thing about it is a lot of my professional background is in quality improvement. I was a Six Sigma Black Belt, which is a role that you use statistical processes to evaluate how different process flows work. For me, that's how I framed everything. As I went through it, I learned a lot on the go. But my first day in the hospital was a huge eye-opener to me because I knew when I was starting chemo, I go into the hospital the first day and I was in absolute mental disaster after eight hours in the hospital. That was a me problem. I had to figure out, okay, how do I shovel out of that and then start trying to figure out because a lot of these things, they'll tell you that there's some pretty serious things going on and you have to figure out, okay, how am I going to respond to it? And again, no one told me that there was a better way to think about some of these things as they were told to me. I just let my natural response come out. And I think the more I thought about it, I got a lot better at it as well. Those were some of the high-level things that I learned. We can talk a little bit more about the different components of that.

05:49 SPEAKER_02 Jeff, the fear of the unknown is a common thread in the cancer journey. Can you speak to how this fear has influenced your decisions and emotions as you navigated treatment options?

06:00 SPEAKER_01 So the story with a lot of these cancer hospitals now is every cancer is unique. Right? So every single person in their case is unique. And I clinically, I'm sure that's a hundred percent true. Right? Everyone's cancer experience rhymes. You're told you're sick, you freak out, you have a bunch of bad thoughts, and then you have to manage yourself through the process of getting better, interacting with the medical system. I didn't have a place to start with any of that. And I'm like, it's just crazy because there's eight or 10 things that somebody can learn that will make the whole process considerably less stressful. Everything may not resonate with every single patient, but I'm a hundred percent convinced after talking now to probably hundreds of cancer patients that the experience that everyone has rhymes. And there are certain guideposts that they can use or not use to help manage themselves through and more importantly, reduce stress. That's it. Cause you see it. I don't know. I mean, you probably visited people in the hospital. I mean, I was stuck in the hospital four days at a time for my chemo treatments inpatient and boy, oh boy, do you see a lot. My floor had a fair number of pretty cute cases on it. And I mean, people were all over the place, laughing, laughing it up, pooping it up with their family, crying, wailing in the middle of the night. I mean, it was all the way across the border. And I'm just like, well, why is that? Right? First of all, okay. And then second of all, who are the people that are doing great? What can I do to emulate them hard? Cause you don't really know what's going on between the ears. But then I started kind of putting two and two together over time. And really a lot of it kind of came together near the end of my treatment and afterwards in terms of, okay, what did I do when I relate to other people and in comparison to them, what processes did I use that reduced my stress compared to what someone else is feeling at the same time? Part of it's personal. Some people react a lot more to different things, but part of it is, look, here's a place to start and here's why it works. I just think giving that roadmap to somebody, the second somebody says, look, you're sick, here's a way to manage yourself, throw it out or use the stuff that matters or makes sense to you.

08:14 SPEAKER_02 I think that would be an enormous help for every single patient, 100% convinced of it. Our emotional coping mechanisms can vary widely from person to person. Could you share some of the highs and lows you encountered during your treatment process, Jeff?

08:30 SPEAKER_01 Yeah, look, I had it for a while. I was generally unconcerned because it didn't hurt. It wasn't really bothering me, but it was starting to grow. And more than a few people are like, hey, look, you probably should get that sorted. When I think back through it, my experience in terms of being told that I was sick, I think is a little bit different than a lot of people. A lot of people will go in, they'll have some kind of a test or what have you, and then they'll get the results back on this like, boom, this is what you have. For me, it was kind of a slow burn where they would try one thing to figure it out and then they couldn't figure it out. And then they would have a surgery to try and figure it out and then they couldn't figure it out. And then there was a comment that my surgeon made after the first surgery where they did a biopsy and they still couldn't determine exactly what it was. They had to go and send it out to somewhere else to have it looked at. And I said, okay, well, we had the first surgery, I had to heal up, and then they were going to go in and remove this mass. I'm like, well, that's great. When can we do it? And he said, well, I'm not really sure. He says, we're talking to a couple other doctors. We may just let the medicine take care of the tumor. And I'm like, I was listening. Medicine probably means chemo, right? Because I had thought naively that once I had the tumor removed that I was done. And I really didn't have any indication until right after I'd had my second surgery, they said, well, you need to go see this guy next. What's next, right? So that was a little bit of a shock for sure. But I knew I was sick in one way or the other. I thought I was kind of squared away, but then they're like, okay, here's what it is. And then your mind is off to the races in every conceivable possible way. Right before the holidays, day before Thanksgiving, it was bad. Looking back, I probably did okay with it because I figured, okay, fine, let's go. But I had no idea how difficult some of the processes were going to be that I had to undertake to get better.

10:21 SPEAKER_02 So cancer diagnosis can bring on a sense of isolation for many people. In what ways have your relationships and support networks been affected? And how have you dealt with these feelings of isolation?

10:34 SPEAKER_01 Yeah, you know, my wife was there and it's just, that's the point where if we had someone like you or some kind of coach sitting right next to you, the second they tell you that, right? All this horrible stuff that goes through your mind wouldn't go away. But certainly you could get refocused in a way to maybe deflect it or make use of it or minimize it or whatever. Right. But instead we're just like, hey, you know, you're sick, you have cancer. Here's the day you start chemo. See you in a week. That to me is just, it's insane. It doesn't make any sense. In the world we live in now that we don't give, at least here's a place to start, right? In terms of how you process this.

11:14 SPEAKER_02 As you're getting that news and you're starting to speak with your healthcare providers, share with us a bit about that experience and how those roles are played out, how that information is communicated and conveyed with you.

11:26 SPEAKER_01 So, you know, it was pretty quick, right? You walk in the room and they're like, you know, hey, how's everything? How's your dog? Whatever. And hey, we got the test results back and you have T-cell lymphoma. And you're like, okay. And he's like, well, you're going to have to do this and this and we're going to set you up for chemo and that. But I think the problem is that you're not connected to really much anything after they tell you that you're sick. And again, like it's just this frustration because like there's no recognition of the fact that people may be there, they may be nodding their head, but they're probably not taking in 25% of what the doctor's telling them at the time. I know I didn't. And it was this kind of surreal thing where, you know, I still can picture it in my head where he's talking, I'm asking questions that probably weren't great and then we're done. And he says, well, we'll see you in whatever, a week or two weeks or whatever it was. So you're almost disconnected. And that was my personal experience. I mean, other people can shake that right off and then just dive into it. But, you know, the other thing about it is you don't even know what to ask. You don't know how to approach it. You don't know how to, I mean, none of that. Right. And it's like, those are all hard learned lessons. Abdicate for yourself. You better know every single thing about everything that's going to be done for you. All those kinds of things that you should be doing, no one tells you. So that was my frustration in a lot of ways.

13:04 SPEAKER_02 It was a very challenging time for us. We had to prepare ourselves for the unexpected, the unexpected, and all the flurry of activity. So to prepare ourselves for the inevitable likelihood of the surprising hurdles that often occur, we try to program ourselves to expect the unexpected. However, little can arm us with the mental and emotional fortitude needed when confronted with the unexpected. And so, with that, we're going to wrap up our conversation. We join medical diagnostic specialist, Lori Marini, hearing how devastating the news of cancer was for her, although she spent her days consoling other cancer patients on a daily basis. Tune in to find out more when we return to The Light Inside. Detrimental health issues. It's a phenomena that has echoed throughout history, where we often find ourselves metaphorically burying our heads in the sand, hoping that dire circumstances might miraculously disappear. The thing with cancer is that like any other detrimental health issue, we're often caught off guard and unwilling to acknowledge the inevitable. This inclination to avoid the harsh truths of our health is a deeply rooted part of our humanity, one that has both shaped our evolution and presented challenges as we grapple with the complexities of modern medical understanding. Although the outlook might seem bleak emotionally, we're able to truly empower ourselves to create a different, more hopeful reality. As we uncover the psychological underpinnings of this phenomena and explore how acknowledging it can empower us to take charge of our well-being. When Lori Marini was diagnosed with breast cancer, regardless of her practiced and well-experienced position as a cancer care provider, she found herself lingering in this emotional turmoil. Lori, though you have a long history with the cancer journey, your own diagnosis still helped you reconnect with that inevitable moment of our humanness all cancer patients face, where the uncertainty of the circumstances catches us off guard. Can you tell me how your experience as a medical diagnosis specialist shaped your reactions

15:24 SPEAKER_00 during the defining moment when you, yourself, were diagnosed with breast cancer? So yeah, I'm part of the diagnostic team. I'm the team that's behind the curtain that nobody realizes is there. So between any procedure that you have in your diagnosis is a team of professionals that are doctors, non-MDs that facilitate you getting a diagnosis. And so I've been part of that. So I am well versed in anything that has to do with disease in the human body.

15:52 SPEAKER_02 Lori, did this experience soften the blow for you, any when you were presented with this news?

15:58 SPEAKER_00 For me, it was a little bit different because how things evolved were from a baseline screening. Right. So I was supposed to go get my mammogram done at the age of 40, but life happens and I just didn't go. So at 41, I found myself at my primary care physician's office apologizing, being like, Hey, I'm really sorry I didn't go, but I promise you I'm going to do it. And she turned to me and said, you know what, Lori, you just bought yourself another four years. They just changed the guidelines to 45. And by this point I was 41. And, you know, I kind of let it go. It didn't really sit well with me, especially because of my background, but I let it go up until the point that I had a dream. I had a dream that I was riddled with cancer. And I don't know why I was pulled to get that mammogram. It really could have been anything in hindsight, but what happened was I called to get an appointment. They had an appointment the very next day, which never happens. And on the screening, they called me back and they said, we need a repeat imaging. And if you're in the field, you know that that's very common. So again, I didn't think anything of it. I went back for a repeat imaging and it wasn't until they were in my lymph nodes, they were on image 65, I'll never forget it in my lymph nodes that I knew I had a problem. So I never had the conversation. And I think it's because they recognize that I am usually on their side of the table, but nobody ever said to me, Hey, you have cancer. Like I had to ask somebody. So that pivotal moment for me was self-imposed because I knew what they were doing when I saw them measuring my lymph nodes. Like I knew in that moment I had a problem. And it really brought me to a space where I remember looking at the lights and like saying to myself, okay, this is it, right? Like you may not make it out of here. What do you want the rest of your life to look like? If you do make it out, then what do you want it to be? And I remember all the things that I said that I wanted to do, like that I've been putting off that I, you know, I was writing my will, do you know what I mean? Like how it was going to go. And that to me was my life-defining moment. After that, everything just really took its course as far as going through the motions, right? When you're under treatment, they just tell you where to be and they take care of everything. Like there's no thought in it. You just kind of become somewhat like a robot until the point that it's over and your treatment's complete. And then it's like, okay, well, what do I do now? Right. And that's what launched me into coaching is like, I want to help people at that point of like, okay, you're alone now. What do you want? How do you want to live? And that is really the catalyst for my expression that I use all the time is live courageously. Like you have a choice to either push forward and become the best person that you want to be without the limitations that others might impose on you, or you get to play small. And I'm just like, you know what? I didn't go through all of this to play small. I wasn't like that to begin with, but now it really exponentially grew

18:57 SPEAKER_02 for me because of the experience. Lori, share with us the initial emotions you experienced upon receiving your cancer diagnosis. How did it impact your sense of self and your outlook on life?

19:11 SPEAKER_00 So part of the thing that happened with me is that I already knew the worst and the best case scenario because of my career. And so, you know, usually people will come to me in my life and be like, Lori, like I got this going on. And I judge how much information they want to know, like how much can they handle? And I speak to that. Well, I didn't have the luxury to do that for myself. So I was in this space where I knew, especially because I worked with metastatic breast cancer patients on a daily basis, I knew the devastation that could happen if I didn't get a handle on it and do the hard things that I know I needed to do. So, you know, for anyone listening, anything that you have going on in your life, I'm a firm believer that you have one shot, one shot to get it right. Like trying to make something over most of the times would not be as amazing as if you got it right the first time. And medicine is one of those things, right? A lot of people try to shortcut, oh, well, I'll just go and I'll just get this then or that then it'll be easier. Like medicine doesn't work like that. So for me, it was one of those things that I knew what my future could possibly hold if I didn't do it right. So I went really aggressive. My team was like, Lori, you're being too aggressive. Like you're good. And I'm just like, no, like I learned that I needed to be an advocate because people had different plans for my body. And I'm like, that's not happening. I couldn't be true to myself if I listened to them knowing that I was going against the knowledge that I had, if that makes any sense.

20:54 SPEAKER_02 Throughout the course of our discussion on all of the issues that cancer patients face, that notion of self-advocacy comes up. Am I correct in assuming that that's such an essential element of the treatment path? Yeah, definitely. So what I'm learning is that over the course of time, a cancer diagnosis can lead to personal growth in a reevaluation of life's priorities. Lori, in what ways have you found silver linings or positive

21:21 SPEAKER_00 transformations emerging from this challenge? Oh, gratitude played such a huge role because, you know, especially when you're going in the middle of this life crisis that you have no idea how it's going to play out. Being grateful for the things that you can do and the things that you have is really all you have. And I know that sounds kind of really weird, but if you go in with a negative mindset, then all you'll see is a negative. And so for me, I couldn't live that way. Knowing that I was facing my own mortality, I didn't know if I was going to make it. So I'm like, okay, well, I don't want to live the rest of my days with this negative mindset. My catalyst was my boyfriend saying to me, Lori, you need to step out of this mindset that you have. Like you're being negative. You're not being hopeful. Like you need to cut it out. That's not who you are. And you can't let what's happening to you change that. And I needed that like hit on the head for him to tell me that to recognize like I wasn't being my true self. I was caught in the worry of everything that I had going on because again, I knew too much and I couldn't filter that for myself. So I started taking on a daily gratitude post, which is my Instagram account. And every day I would go through life looking for something that was beautiful, inspiring, that made me smile. And I would take a picture of it. And I would just keep doing that as I went through the day. And then at the end of the day, I would post the one that resonated with me the most. And it allowed me to just recap the good that's in life. Even when you're going through really bad times, there's always like find the good. And that practice allowed me to embody that. Because like if you focus on the negative, all you see is a negative. If you focus on the positive, you'll see the positive. And it allowed me to just breathe, not be so anxious and just be grateful that I woke up. And so that's one of the other things that I do is every morning I turn to my partner and I tell him, we woke up, we made it through the night. We get to live another day

23:22 SPEAKER_02 and just be grateful for that. When it comes to the devastating blow dealt by a cancer diagnosis, although we are faced with so many monumental questions, it might seem as if no one is handing out a manual on how to navigate treatment. From the intricate balance between fate and free will, to the exploration of the meaning of suffering and resilience, and finally, the poignant contemplation of mortality's role in shaping our priorities. This was also the case for Jeffrey Bothman. As we discovered in our first segment, Jeff authored a book aptly entitled, How to Be a Cancer Patient, which serves as a guide to navigate the complex terrain where the science of cancer intertwines with life's most profound questions. Jeff, beyond the physical battle, a cancer diagnosis can trigger existential questions about life and mortality. How have you yourself grappled with these deeper philosophical concerns?

24:28 SPEAKER_01 Yeah, no, I mean, that's, I'm like, look, I wish I would have had my book as a guidepost. It's not going to be perfect for every single person, but at least there's some core principles in there that apply to really everyone and everyone's experience that help reduce stress. I mean, I think for me, my first day in for chemo, I had zero chemo. I had a whole battery of tests that I didn't even know was coming. I had a heart test, I had a bone marrow draw, I had a PICC line put in, I had to have a whole bunch of blood tests. And the point was here, I thought when I hit the ground at 6 a.m. in the hospital, that two hours later I would be getting my chemo treatment. The reality was I had all these things ahead of me. I didn't know about it. And that's on me, right? At least the way I look at it, I didn't ask, but I just, I became less and less and less and less effective during that first day because I was so agitated, right? Because I was all ready to go and then all these other things came up. They're like, well, we'll start tomorrow. I'm like, I'm only supposed to be in here four days. Now you just stretched it to five and I got nothing done in the first day. So I learned my lesson there. You get to ask what's going on, what happens next, right?

25:44 SPEAKER_02 Whole experience, many regards, takes over your entire life, your entire sense of beauty. Oh, for sure. I want to look a little at some of the numbers, statistics, if we might, if that's something you will reference just real quick for me here. Yeah. From your research. I know personally within my family, I've been personally touched by cancer with more people than I can count on both my hands and fingers. Personally, I've lost a niece to brain cancer, my mother and father, both my grandfathers, an uncle, two uncles, just within the last 10 years. My sister now, half the people I know, it seems have had cancer, you know, that may be just a glib ballpark throw out there. What are your statistical experiences on some of the numbers if you have them?

26:34 SPEAKER_01 It's the same, right? And actually, I think it's probably more than we know. And here's why I say that. When I started working on this project, people came onto the woodwork, oh, so and so's sick, oh, my cousin's sick, my brother's sick, my mom's sick. And I'm like, oh my gosh, right? Now part of it is it's one of those things where you'll see whatever you're looking for, kind of one of those things, right? But the more I thought about it, there are a number of people, and you probably could relate to this, that have been sick, have gone through the process and have hopefully been healed, and you never knew about it. Because that is some people's response where you just kind of hunker down and you lay low and you don't go to functions, you don't go to church, you don't know, whatever it is, right? And then you find out later that somebody was sick and you're like, oh my gosh, I can't believe it, right? So it's a lot. And you look at the kind of global statistics and I think COVID made it worse and that people didn't necessarily get into the health system, get checked up when they needed to. So it seems like there's a bubble coming there, but it just seems like every year it's just slowly creeping up. And I think the medical community has done an amazing job in terms of being able to fight a lot of it, right? But it's everywhere and it's still scary, right? I mean, it's-

27:56 SPEAKER_02 It's going to be such a bleak outlook if we allow ourselves to draw completely in that, but realistically with some good healthy psychological distance, we're able to look at that and examine the very real fact that it's almost an inescapable fact that someone throughout our lives will be

28:15 SPEAKER_01 affected by it, if not ourselves. Yeah, no, it's 100% true. And look, I mean, I think the other situation that's analogous to that is everyone gets their diagnosis and what do they do? They run to Google, right? And you start looking up and mine was a little bit unique in terms of the diagnosis. So of course you go on and it's like, oh, what are the survival rates? And that's a whole nother hurdle that you have to overcome mentally, right? And it's just, I saw that I'm like, oh my gosh, because I think for me it was like in the mid-20s or something after five years. And it took me a while to come up with how do I think about this different and my response was I'm a sample size of one. So I'll be in the 25%.

29:03 SPEAKER_02 And that healing journey almost has to be personalized from that energetic level to where I am my own statistic, I am my own experience. That's a normal healing path for each of us. Start no matter what the element, no matter what this condition we're addressing, it all starts with that energy. That's a whole nother conversation that we're planning and looking to get into down the road, how our effects are human experience. So I'm going to frame that a little bit. Reeling back a little here, I've got an added perspective where I have a brother-in-law who is an administrator for the cancer department at Johns Hopkins University in Maryland. Traveled his career course through nearly every major cancer institution in the US. He's been at NYC, he's been at University of Chicago, he was at Denver University, all of these major cancer centers as a lead administrator. So I get that added benefit in a lot of ways looking at how they are very dedicated to serving people, to caring for people, for trying to nurture and find that pathway to cure to that pathway to healing. I know that path can diverge at any point in the woods based on individual interaction. Looking back again, all of that uncertainty, all of that, where do I go with this diagnosis now has to be very stressful. I know it's very stressful for most because like I said, I've had my firsthand touch points with family members. We've been diagnosed now. What? And that next step or often one of the more recurring steps is that need to try to find the answers. How have you managed the emotional toll of not knowing

30:51 SPEAKER_01 what the future holds for your health? Yeah, no, it's a good question. I will say, I went to the James Cancer Hospital here at Ohio State in Columbus and fabulous treatment, soup to nuts. Everybody was great. Everybody was helpful. Never one time did I experience anything that was negative in terms of interactions with any of the staff. It didn't matter who it was. For me, it came down to a couple of different things. That first day in the hospital, I was a mess mentally. I got loose where I just wasn't in control of what I was getting agitated and angry and whatnot. The first hurdle for me was just wrangling those thoughts. Believe me, there's all manner of thoughts. I'm going to die. What's going to happen to my family? My survival rate for this cancer is low. The first thing I tell people is you have to get that noise under control because if you don't, there's really not a whole lot else you're going to be very effective at going down the road. Then after that, I stumbled on or purposefully found things that would reduce stress. The first two things I talk about is to advocate for yourself. That's the concept of ask if the lights are too bright or if you need a blanket or whatever it is because the minute that you have a thought of something that is uncomfortable and you just let it sit, then that just sits in the back of your head and kind of wallows. I don't think that's helpful. The next order of that kind of process is, okay, do some homework to find out what flexibility there is. Maybe there's some really great options. To me, it was a huge revelation when they told me I could bring my own food in because I thought I was going to be stuck eating hospital food, which you can't imagine how great homemade soup tastes when you're in the hospital. The whole point of advocating, it's twofold. One is hopefully you'll get a better experience, but two, it takes your stress level down a lot. Then I think that the next thing that I talk about is this concept of studied indifference. You have to know what is going to happen to you or what's going to be done to you with any kind of process or procedure medically to such a degree that you can vet it, the good and the bad, know it, understand it, and get to a point where you can just let go and let it happen. It doesn't mean you're going to totally let go. It just means that you're at the point mentally where you've done all your homework, you know what you're going to do if something bad happens, you know what the expected outcomes are, you know when there's a red flag, right? You have a plan or a thought on each of those different possible outcomes. Once you're there, you're settled with it. You know you have to do it so you can just let go of a lot of the stress that you would otherwise have. Those were two things early on that I finally landed on after really that first disastrous day in the hospital.

34:05 SPEAKER_02 From your perspective, how equipped are most cancer patients to manage some of the stress? Is that something that's an open pathway, the instant through your normal care providers from your experience or is that something then that you're kind of relegated to seek out on your own?

34:21 SPEAKER_01 Probably a little bit of both, but the problem that I see with it is it's not connected to your process, right? So it's like if you feel stress, you know, oh, call the 1-800-STRESSLINE or learn how to meditate or whatever it is, right? Where my whole thought is it's like, okay, there are certain things that have to happen between being diagnosed and being discharged healthy. And a lot of those steps are going to bring stress through uncertainty, through whatever kind of challenges the actual procedures bring, whatever it may be. So rather than just saying, you know, you can opt in, right? And this is, again, this is part of my challenge with it, right? And the joke I make, and it's kind of a little bit bad now, but it's like, okay, imagine men asking for directions, right? As the joke goes, right? But now imagine men having to opt into mental health and really even a lot of people, right? They feel scared, they feel dumb, they feel whatever. And my whole point to everybody always is if you feel like it's too much, raise your hand. I don't care. Every hospital on the planet will find you somebody to talk to, right? And if you can't find anybody to call me, I'll talk to you, right? But the disconnect is everything's available. It's a la carte. It's opt in versus just saying, look, you're sick. You're going to have to go from A to B. Most patients feel these different things as they go through it. Here are some strategies that you can use to be more effective and reduce your stress. If everybody was given that starting point, I'm convinced 100% that it would reduce the stress that every patient feels. And it doesn't even really have to be right, right? Because it's like, oh, well, here's one thing they talked about XYZ. And it's like, well, XYZ really doesn't make sense, but I understand what they're saying. And for me internally, I should do this instead. Great. That's perfect. But at least there's thought on purpose to have a strategy with how to deal things that you know are coming for every patient. And that to me is just a ginormous gap. In that regard, throughout our average day-to-day interactions, regulating our emotions and coping with our feelings can often be a challenging proposition for a lot of us. Yeah. And you rely on what you know, and sometimes you don't know. And I found out quickly I didn't know what I didn't know, right? Which is there's all these different things going on. And unless you have an approach to them, you're going to drown. And I think part of it is I reflect on it. And certainly they have a cancer, I call them cancer coach program at the hospital that I worked at. And I've worked with several patients. And I think part of the thing is people are, I don't know if trained is the right word, but they're certainly conditioned to not challenge the medical authority. And my whole point is, look, you're not a doctor, right? Whatever they tell you needs to happen in your treatment medically, that's it. You don't get to go and make one up on your own. But, and it's a huge but, you need to understand as a patient, every single thing that's going to happen to you. And if you're uncomfortable, you need to raise your hand. Don't worry that you're bothering somebody. Don't worry that you don't know. Don't worry that you're not educated enough to talk to your doctor. You have to talk to your care team enough about every single thing that happens to you and ask for certain things that you think can help you. And don't feel bad about it, right? I mean, this is, you know, for some people it's a battle of life and death, but some people need that push. And, you know, my advice always is if you don't think that you can do it or you're not comfortable doing it, or you're not able, which in some cases is true, then find somebody to do it. Find an advocate to do it for you. But it's super important on a lot of different levels.

38:13 SPEAKER_02 What we have there again, that moment of truth where we're thrust into a lot of situations where we're looking at mental stigma, we're looking at social and cultural stigma, you know, what it means to be a male and vulnerable. And there again, it adds weight and brevity to that anxiety, to all of that motion of what's going on within our psychology, our thinking, our ruminated thoughts sometimes. Yeah. Oh, it's true. 100% true. We look at even things like cultural stigma about what it means to meditate. We're suddenly thrust into, well, now here's something that I'm in a very dire situation where I have to consciously make that choice quick. You know, where do I stand on my past principle and where do I lean into my wellbeing and my healing? It could be a very unsettling circumstance to find yourself in.

39:07 SPEAKER_01 Well, and another parallel to that too is how you employ your faith. You know, I'm certainly not qualified to talk about it rather than my observations on it, but it's, you know, some people that's the core, right? That's the foundational block of them getting better and other people, it's a support system. There's such a wide variety of views on how that can be incorporated into different challenges, right? And that's kind of how I present it. It's like, okay, if you want to have a faith-centered approach, that's great. If you want to have it faith-supported, that's great. It's not for anybody, in my opinion, to say you should do A or B.

39:42 SPEAKER_02 Just find what works. Here's some ideas. That precipice we all tiptoe up to in that moment, you know, we find ourselves searching for those answers. You know, what does my faith mean to me? What does my spirituality mean to me? We each have our different courses. We each from a different

39:58 SPEAKER_01 origin and nature have those issues. I don't know that that's the time to progress it very far either, right? I mean, if you are where you are, right? No, because it can be hard. It's a

40:12 SPEAKER_02 lot of mental work and a lot of, it takes some work to get to that. That same regard, you know, we're suddenly thrust into that same kind of view through the closet with our psychological aspect of it as well, because we bring all of that psychological experience, I'll say experience, some of its past, present, some of its even future based to that table. Now, all of a sudden that here are these things that I've been carrying along and I might not have even been aware of a lot of that. Oh, that's yeah, that's for sure. Your goal writing the book was to kind of give some of that pathway to start to have some of that handbook or manual looking toward the future. How can we maybe bridge some of these gaps with building in those options or giving a more open pathway to addressing some of the things like dealing with the stress, dealing with some of the secondary treatments with managing pain issues, managing the anxiety. I naturally lean toward meditation for instance, because I know the power that can be present in that throughout all lines of our mental, emotional, physical, psychological health.

41:24 SPEAKER_01 Yeah. So I've spent a fair amount of time thinking about that exact question or something very close to it. And if you think of how a hospital is structured and really more importantly, how they get paid, they get paid to perform medical procedures or whatever it is. They get paid to fix you. They don't get paid to make sure that you're happy and healthy and mentally healthy and comfortable while they're doing it. So there's that gap. There's also a gap where in a perfect world, there'd kind of be one-to-one between a cancer coach or helper, social worker, or whatever in a patient. Well, it's just not realistic. So those two kind of foundational things for me is like, okay, well, so the approach has to be kind of one-to-many. So I can put together a manual or maybe make videos or whatever it is down the line that everyone can access. But I do think it just has to become a norm in a hospital that says, look, here's a place to start. You don't have to use it, throw the trash if you want. It doesn't have to be even a book. It can be a five-page booklet and it says, okay, here's this, this, this, try this, try this, try this, off you go. Because I made a point as I started writing the book of looking at all the resources they had available in the hospital. It was like, oh, well, if you have this kind of cancer, here's the booklet for it. Oh, eating during cancer. And they'll even have some on stress, but then they tell you, well, you should learn how to meditate. Well, look, when I first started meditating, it's really hard. Right. It may not be the time to take that on because normally

43:01 SPEAKER_02 it's such an unfamiliar, very, that's the last thing you need. Yeah. My own experience as I leaned into that as, and it's a whole new world of skill that opens up a Pandora's box. Yeah. Positive and negative, beneficial, adverse, you know, it's a pathway to clear out all of the junk that's in that closet that's going to come tumbling out. Yeah. Right. Right. But it's very

43:25 SPEAKER_01 unsettling in an already unsettling circumstance. Yeah. Right. I mean, it's like, okay, you don't need that. Right. I don't think, I mean, maybe, right. But it's hard enough just to get your head, you know, screwed on straight every day, just to kind of lean into what you need to do for the day.

43:39 SPEAKER_02 To be realistic. You know, there again, we add one more check mark of boxes. There is value. Some people from their makeup or from their purposeful drive will find that meaning and go that course there again. Do we allow that option to be present and do we have that pathway available? So it's clear and understandable. So it's easily accessible. One thing I want to pin here today is that idea of sticker shock. I'm going to call it sticker shock. Yeah. Of any kind of major health treatment, even minor. Two summers ago, I took a crash on my mountain bike and did $12,000 worth of spinal damage. Falling off a bike. But that sticker shock of just that treatment, $12,000 and you know what I do, a couple pictures, people pat me on the back and I'm kind of minimalizing this, but caring for me, but very minimally evasive to what they actually had to do for me. My sister now is telling me, that sticker shock pops up and even the second time around, it's still that sticker shock of you're presented with this menu now and it's usually right after you had your first round of

44:47 SPEAKER_01 chemo or your first round of whatever treatment. Yeah. I think the thing that struck me is I wasn't really able to process a lot of that until I could get the noise to slow down. And that's always the problem. It's just until you get that constant chatter in your head about, oh, I'm being sick, I can't do this, I have to do this, this could happen, this good could happen back. Until you get that noise turned down to a level where you can think, I don't know what you can do about it. That has to be your primary goal going through this is just shut that noise down to the lowest level that you can so you can then start to think about some of these other things. And when sticker shock shows up, you're like, whoo. Then instead of adding that to the pile of things that you worry about and make that whirl in your head go faster and faster, if you're able to turn that noise down, then you're able to start at least thinking about it. You may put, you say, look, this is a problem, I'm going to deal with it later. But at least you're not going to go and add it to

45:54 SPEAKER_02 the pile of things that you're worrying about. Do you feel from your experience, there might be or there are times where that does kind of have an adverse effect on a patient, where it might shift

46:07 SPEAKER_01 in effect what they would do for their best good based on that consideration? Yeah, are there options, right? I mean, it's part of advocating for yourself, right? So there's a line between your doctor saying you could do A or B. And to me, the kind of first order thinking is, okay, what do I need to get done medically to get healthy, period. And if there's multiple options, then you got to start warning them to ground. And again, you have to get that noise turned down, but then it's just you're going back to advocating for yourself. Okay, how can I do this? Can I go to a different facility that's maybe less expensive? Can I do this on an outpatient thing? I mean, all those kinds of things, but boy, that's a tall order for…

46:54 SPEAKER_02 Yeah. It's so complicated, right? It's open up a Pandora's. It is. Oh, it's huge.

47:01 SPEAKER_01 Realistically, they're… Yeah. You know, and- I thought I was doing good when I was able to get to the more comfortable MRI tube

47:08 SPEAKER_02 that was still in my healthcare network. Sometimes it's just acknowledging that. If you let it slip to the background, it keeps sliding back. Acknowledge it and like anything, bite off of chunk and what do we do to change? What do we do to change? Yeah, that's a good way to think of it. Yeah. So that's 20 conversations worth of podcast right there, looking at just the social structure. Yeah. Yeah, I agree. It's something that we tiptoed up to it a number of times. How do we slide into this complex issue throughout life without sliding into something like the declineism bias, where we only focus on the negative aspects of something? We have to kind of get to that bigger picture sometimes and just bite it off bit by bit. It's just too complicated now, right? I mean, it's just- It's complicated and that puts the fear in most of us. So yeah. Yeah, it is. I mean, just how all that works. Where do you start? To me, my best answer is just pick one square. It's like playing checkers. There's only one square you're managing right now to make that next move. Yeah, yeah. One move and let it go. That's a good point. If you've solved your one move or put the one piece of that puzzle in, don't worry about putting the whole puzzle. That's an ethos for life for me is, I'm not always worried about putting together the whole picture, although I know my tendency is to always zero out and look at that view down of what is the big picture. Yeah. But if you don't start with that first piece of one, none of the puzzle is going to come together. Worry about your one piece sometimes is the best you can do in life. Yeah. No matter what the situation, you have to kind of come to terms with that sometimes and say, I can only be responsible for this one piece and let the rest of it go. Yeah. That's your own one. Don't help. That's a great line. From that aspect, at what point do you step away from advocating for yourself and vulnerably and openly allow for others to step in, from your perspective and your experience? Let's put that out there today. I'd like to look at that.

49:13 SPEAKER_01 I think if you're just not comfortable, there's certain things you have to do to minimize your stress level. If you're uncomfortable sitting in the hospital, freezing cold, you have to be comfortable enough to say, look, I need a blanket. I mean, something that simple. So that's kind of the base level of advocating for yourself. And then it goes up from there. And then the other one is you have to know what is going to happen to you. Hey, we're having a surgery next Tuesday at noon. Okay. Well, walk me through what happens. Every single thing. Do I have to have anesthesia? What's supposed to happen? What bad things could happen? What are possible complications? What do most people feel? So if you're not in a position to ask those questions because there's just too much noise in your head or a lot of times too, and I felt this a lot later in my treatment, well, I was just mentally, I wasn't all there. I knew enough to know I was kind of slow, but could model through it by then. But a lot of times that happens to people early on. And I think if you don't feel like you can get to the bottom of those two things right off the bat, then you need to raise your hand and say, look. And if it's someone that you're a loved one or a friend or family or whatever, and you see that happening, you can also offer to stop them to step in. But my whole missive on that is you have to be in person. So if they're going to have a conference with the patient and tell him or her, here's what's going to happen, the person that steps in as the advocate has to be there. It can't be like secondhand. And then they have to do their homework. If you're going to advocate for somebody, you take on those responsibilities, but you also take on the responsibility of just looking out. So your whole goal in life is to ask every question that needs to be asked to make the patient as comfortable as possible and to be so as far as possible ahead of the treatment plan so you know what's coming. And you can help them manage not only the medical process, but life goes on. Dog needs to be fed, laundry needs to be done, kids need to go soccer, whatever it is. So if you don't think you can do that on your own or you're not

51:21 SPEAKER_02 comfortable, then raise your hand and get someone to help you. That could be such a challenging, vulnerable place to find us in, such an unfamiliar place no matter what circumstances.

51:32 SPEAKER_01 To just simply surrender. So you have to go past your normal sense of confidence to get to the point where you can do those things. But you're already beat down to start with. So I

51:44 SPEAKER_02 think it's even harder than some of the things you have in everyday life. In that regard, and I know this again tiptoeing up to that dual edged sword, we're taught to battle through our illness, we're taught to battle through cancer, we're conditioned to fight with everything we got, which has its benefit. Yet now we're presented with this kind of dual front, this kind of contrasting view that says, but a certain part of that, I fight in one area, but I surrender in another, can be kind of conflicting and divided. You can only fight so much of your own battle before you have to bring in the team off the bench. Michael Jordan won how many championships? But look at, he have done it. And that's, I'm going to the worst case scenario to explain, but it's also the most familiar, that's why we go to it. In order to be a champion for yourself, you also have to have a champion team behind you, would you not agree? I got lazy with Michael because it's a lazy, you know, for me it's a lazy because it is one of the most clear cut ways to say that.

52:51 SPEAKER_01 No, it's true. I mean, yeah, a hundred percent resonates. Yeah, for me, doing your homework allows your team to support you and for you to let go. You know, what do I mean by that? Right? If you are going to have some kind of procedure or whatever, I mean, you have to know what's going to go on in and out and ask all your questions, meet the people doing it, whatever the case may

53:16 SPEAKER_02 be. But then to your point, you got to let go, right? It's, you know, it's not what you do, right? In most people's cases, right? Allow people to care for us can be some of the hardest steps to take in life to simply allow others to care and nurture us. Yeah. And you're right. I mean, I would feel bad. Sometimes it takes a lot of pride to swallow. Yeah. Yeah, I think so. Eating the elephant, I go back to that notion of eating the elephant. It feels like eating an elephant to just simply say. I have no more of my own to give. Please just love and care for me. Yeah. Or I can't do it, right? That's hard for a lot of people. Yeah, that's the biggest thing. I can't do it. Well, I can't. There again, we've got that dual idea that there is a certain amount of fight to get through those elements. There's a certain amount of effort in energy and you're already taxed. You're at a finite amount in that moment because literally every resource you have is being affronted by some regard or called into play. There again, how we even address it in the moment creates how we create that experience. Are we being battled and beat down by the cancer or are we powering our way through? Are we empowered? Are we open and vulnerable? We have to embrace that

54:37 SPEAKER_01 whole gambit, I feel, with some level of openness. Yeah. No, I think that's true. I think there's a line somewhere where you don't want to open it up so far that you get, I always say it's random people, but you get random people that are offering to help you that really just adds more stress.

55:00 SPEAKER_02 Everyone has their core group of people. That's a whole other two or three conversations to address. No, it is. It totally is. Yeah, it totally is. The way you start to work through those things becomes a pathway through. How do you build a resilient team behind you but still kind of bring in only the all-star players? Yeah, absolutely. It's absolutely true because if you don't, it can add more stress and then you're not really doing yourself any good. That's a really good question. That's a really good thing to think about. I know from my own witnessing and my own firsthand touch points that those are key aspects that often come in. If we're to give three tips today, and we'll call them tips, just what are your three key takeaways that might be the most empowering for somebody to utilize?

55:53 SPEAKER_01 Well, it's really the first three things. One is you have to find a way to turn the noise down that comes into your head the minute that you're diagnosed. Sometimes it lasts for a week, sometimes an hour, sometimes a month, but until you turn that noise down, you won't be able to function at your highest level to kind of go work through some of these other things. So that's kind of a foundational process. And again, if you don't think you can do it or it's too much, raise your hand and get help. So that's number one. Number two is advocate. I've brought it up a bunch of times, but I think you need to advocate for yourself in every possible way and do it with confidence and don't feel bad about it. Be nice and be respectful. I mean, that's the other thing, right? All the people that are out there helping you are out there to try and make you well. So there's no need to be nasty or mean or aggressive, but certainly, if things are possible to help reduce your stress, then ask for them. And then the third thing is you have to stay out ahead of what's going to happen to you on two levels. One is you need to go and ask every possible question you can about the good, the bad, and the ugly surrounding any kind of medical treatment you're going to have to endure. It's a scan, it's a surgery, it's a chemo treatment, whatever it is, right? You have to know that inside and out. And I think at the same time, you have to, that's kind of the day to day kind of here's a discreet thing. And then the other thing is you need to kind of have this view of what's going to happen over time. So if you don't know, then ask. And sometimes your treatment person isn't going to know, and that's okay. But again, if you know everything that's going to happen today in a treatment, and you know your path for the next two or three weeks, you're able to start processing that. And you're able to process it in a way that's different than if you're going just from day to day to day. So those would be the first kind of three steps in the journey of kind of bringing this whole craziness of getting diagnosed with cancer into someplace where you can operate effectively as a patient.

58:04 SPEAKER_02 RG To me is the essential element of turning it down, kind of quieting some of that chaotic noise without completely turning it off, tuning it out or avoiding it. It often becomes the emotional suppression that then the interesting fact is looking at how once we do manage through that initial bout of cancer, those suppressed emotions can contribute to future occurrences of cancer, not to add fuel to the fire, but simply earmark that awareness that tuning it down just enough to create that healthy psychological space or distance to allow yourself to flow through it, to power through it sometimes without completely putting it back in that closet. Steady flow is our ultimate goal, perhaps.

58:52 SPEAKER_01 ISAAC Well, it is, right? Or at least orderly, purposeful. I mean, you can add whatever adjective you want to it, but do go through your cancer treatment on purpose.

59:05 SPEAKER_02 RG On purpose. I love that. Go through your cancer treatment on purpose. I think that's ultimately our big takeaway today. I love your purpose and I love the heart that you've put into this. It's so enlightening to see people that are able to then be of service to other, no matter what you've battled through. So thank you for doing that. Thank you for committing yourself to that, Jeff. ISAAC Yeah, of course. RG My heart to yours. I can feel that firsthand because, like I said, I'm walking that path with my family now. I want to thank you. I feel we've really kind of hit this conversation today. Where can our listeners go to connect with your book?

59:44 SPEAKER_01 ISAAC The book, it's called How to Be a Cancer Patient. It's on Amazon. It's a process to go and help turn the noise down in your head and then a plan to walk your journey through whatever your cancer treatment is. That's it. Pretty simple, layman's terms, concepts that cover the bulk of what you're going to experience through pretty much any kind of cancer journey. So it's that roadmap.

01:00:08 SPEAKER_02 RG Thank you. Thank you for sharing that with us. That is such an essential roadmap. I thank you so much for sharing this conversation with us today, Jeff. The light me acknowledges that light that shines ever so bright in you. I can feel that in my heart and my soul, my friends. So thank you for dedicating your life to others in that way.  Of course. Well, thank you. Thanks for having me.