Krystal with a K: What's up, everybody? Welcome back to Plat Twist Still Alive. I am your hostess
Jake: you
Krystal with a K: with the most is three-time cancer survivor and chaos coordinator, Crystal with a K. I just realized I didn't do that last time. I was fucking crusty, dusty, rusty since I haven't done an episode in like a month. it is officially bomb bomb bomb breast cancer awareness month. And obviously I'm hyper fucking aware. But I'm not the only one. There are a lot of people that are aware that it is Breast Cancer Awareness Month. I love Halloween. I am obsessed with it. cancer kind of stole that from me. So we're gonna do a mix
Jake: Okay.
Krystal with a K: But one thing I really wanted to do is talk to people that you're not aware of in the breast cancer community or something that is under educated on. today we're gonna have Jake. Jake the snake, Jacob. he definitely uses dark humor because he calls himself the guy with stage four cancer. So I love that very much. everybody help me welcome. Jake. How you doing, Jake?
Jake: Hey, thank you, thank you. So I'm good, I'm good. It's another day during breast cancer awareness month, so I'm fine.
Krystal with a K: Ho hooray? yeah, it's
Jake: Hooray! I'm very aware. I'm very aware. Very aware. Right, right.
Krystal with a K: You are very, very aware. Yeah, it definitely comes with a mixed bag of emotions. I think this is the first year I've been able to actually authentically talk about my feelings, and I've been dealing with this eight years on and off. a little bit about me, because I I know you probably know this much. You meet a lot of us, a lot of us folk. But I was diagnosed with childhood cancer at three years old. I had radiation and chemotherapy. Thirty years later, that radiation caused breast cancer. So at 32, di diagnosed with breast cancer, double mastectomy, six months of red double and taxol, and then thought I was good. It was a nipple sparing. five years, my golden year, I got rediagnosed with more breast cancer. It was DCIS, so most of it was just removal. But I ended
Jake: Wow, sure.
Krystal with a K: up doing a deep flap because the tissue that was radiated, like at almost forty, it didn't want to heal. So I had to like hyperbaric chamber,
Jake: Mm-hmm.
Krystal with a K: all that shit. So
Jake: Sure.
Krystal with a K: Very long story short, I don't know that cancer will ever not be part of my life anymore. I also helped run a breast cancer nonprofit during four years of that time and was rediagnosed during that. And I had to like put on this happy face and be this,
Jake: Mm.
Krystal with a K: you know, this beacon of hope at times that on the inside I was like, I'm not fucking okay. There's no way I'm okay.
Jake: Mm-hmm.
Krystal with a K: And I'm sure that you get that. So I don't I don't think people that are cancer muggles or don't have breast cancer
Jake: Right
Krystal with a K: don't get why this is such a complicated month for us. And while we can be appreciative of it, we also have a lot of other feelings about it.
Jake: love the story. great.
Krystal with a K: thanks. My listeners might know it. Who knows? If they jump in now, they didn't, but whatever. these unloyal bitches. No. there's always a BC before cancer, right? I wanna know a little bit about who you were prior to this.
Jake: sure. Well, I grew up in central Massachusetts. If we're go way back, right? Let's go way back. I grew up in central Massachusetts and well,
Krystal with a K: Take me all the way back. Nineteen ninety one.
Jake: I'm a little bit older.
Krystal with a K: Okay.
Jake: 1971, I was born in central Massachusetts, but way back in the late 1900s. so, I grew up in sort of normal white bread. Central Massachusetts, went off to college and sort of did the normal thing, but I didn't really know what I wanted to do at the time. after three years of college, my father was really thrilled about this. When I told him I was going to drop out after my junior year, but I changed my major three times. I didn't know what I wanted to do. I was lost. And so I joined the Marine Corps after those years. And I spent 10 years in the Marine Corps. as a combat cameraman, combat correspondent. really a reporter in the military. I was a morning show DJ, like Good Morning Vietnam, and I was a news anchor and all of those things. That was my job in the Marine Corps, which was like,
Krystal with a K: Holy shit.
Jake: there's way, there's way worse jobs to have in the Marine Corps, right? I had, I had what I could.
Krystal with a K: For sure, but you're holding a camera versus a gun, so I don't know I don't know. Okay.
Jake: Well, I had, I had a sidearm, so I would have my camera on my shoulder, but I would have, I didn't have a rifle. I would have a sidearm and I only had to deploy that a couple of times, but we're, we're that's a different podcast. go.
Krystal with a K: That's another story. You'll come on for that next time when we do veterans
Jake: so I got out of the Marine Corps at after 10 years and I decided that Massachusetts wasn't so bad. So I came back here and then sort of built my career, on that. storytelling modality, right? Whether it be journalism or print journalism, broadcast, digital. I became a marketing guy and sort of navigated my way through the Boston nonprofit marketing ecosystem. So I was the director of marketing at WGBH and I was the director of marketing at Antiques Roadshow. They bumped me up from WGBH to PBS National. I went to Antiques Roadshow. I tell people all the time, I'm like, if you think the deployment schedule in the Marine Corps is bad, like try the Antiques Roadshow. have no idea.
Krystal with a K: Really?
Jake: Antiques Roadshow I only did one season after the year. was like, listen, guys, I need to see my family again. I need to go back. So I got off the Antiques Roadshow. But then, navigating, was the head of marketing at the Boston Conservatory and a bunch of other places. Right. I then tried my hand at the nonprofit marketing agency life. And I had the largest nonprofit marketing agency. We had 14 people, which is not a big agency, but it's big for a nonprofit agency, And when I got sick, you know, I was originally diagnosed stage two. And so probably, you know, and my story is that I was misdiagnosed stage two. I probably should have been diagnosed stage three. And then that morphed into stage four. But when I was first diagnosed, much like you, did chemo and radiation and surgeries and I was on the red devil and taxol and I did five months of that. I would do chemo in the morning and in the afternoon I'd come back and I'd do client calls and I'd write social calendars and I'd write press releases and I had 14 people depending on me, I couldn't just stop working, right? So, We kept doing that for the two years really that I was undergoing treatment. I would do all my treatment and then I'd, you it's not just like working though, it's running your own business, right? It's all these things that come with running your own business. It's the taxes, it's the insurance, it's all the small business headaches that come with it. So after I was told I was metastatic, right, after about two years, it was at that time that I sort of shifted and I changed because I was like, listen, I was doing all that just under the assumption that I was going to be better, right? That I was, that was a temporary thing. But then when it wasn't a temporary thing anymore, that's when I shut down my agency and it wasn't a sad thing. I, I sold it to my trusted Lieutenant who had been with me the entire seven years and she's still running it off on her own and it has great clients and all that stuff. But that was sort of me in a nutshell, another thing that's that's critical to this story is that in 2018, I also had a stroke. had a level four ischemic stroke. Yeah. Sure. Yep.
Krystal with a K: So just for a second, so I can keep my time frame, what year were you diagnosed initially with breast cancer?
Jake: 2023. actually, yeah,
Krystal with a K: so you had the stroke before.
Jake: so actually the stroke sort of in and the subsequent part of that is actually a huge part of my story, right? So in 2018, I was over 300 pounds. I was drinking excessively. I was completely stressed out on all those jobs that I had those high pressure jobs of promoting. I was completely stressed out at work and I had a stroke. And it wasn't the wake up call that I think it probably should have been. I just was like, man, I survived that. Okay, well, I made right, right. I made some changes,
Krystal with a K: Back to work I go. Right?
Jake: but it wasn't a, it wasn't any major changes for probably, you know, close to over a year. And I was well. over 300 and I don't know what I was approaching because I stopped weighing myself. And those of you who ever been on a weight loss journey, when you stop weighing yourself, it's never good, right? You just don't do that. So I stopped.
Krystal with a K: You don't want to know anymore.
Jake: Right. And so I just didn't know. So I was going to use the new year of 2020 as my losing weight. listen, I had done this for decades, right? I would lose 40 pounds and then I gained 50 back, right? And then I'd lose 30 pounds and all going back and forth new year of 2020, new year knew me, I'm gonna make it happen, right? And so I did and I, you know, I start my changes and I start dieting and I start doing little walks. And then if you remember 10 weeks into 2020 comes COVID and Everybody. if you remember the first six months of COVID, everybody was just out there walking, right? Cause there was literally nothing else to do. So everybody's just out there walking their dogs and people buying dogs to go out and walk and everybody just walking. Cause there was social distancing, but just out there walking. Right. And I walked off 120 pounds. and through yoga.
Krystal with a K: Just from walking.
Jake: that's the other part of the story is that's different than every other time that I, that I'd done it because during this process during COVID I was thinking about humanity and thinking about my own humanity and thinking about people being better humans and all of this. I decided to, instead of just losing the weight, look at myself emotionally, spiritually, mentally, all facets of my life. And what I decided to do is I decided to flip over every rock in my soul. And I did two years of very, very deep. therapy and analysis into my life into the places that I needed to apologize for the things that I had done right the things that I had done wrong It was sort of a complete Reckoning of who I was and how I could live a better life not just physically but as a human being when you get to me, sort of looking at everything in my life, I then made a list of about 80 people that I heard apologies to that things that I had done in my life. Some of them were college girlfriends that I hadn't spoken to in 25 years. Some of them were people that I was colleagues with that I had fucked over Some of them were Marines that I had spoken poorly about, know, that I knew for 10 minutes but I hunted all these people down and I apologized to them. And some of them were like, I don't remember that. And some of them were like, fuck you, that still really affects me. And some of them were like, that's cool. But I did my work, right? That was what was the most important thing for me is that I did my work so that I couldn't be the best version of myself. I couldn't be the best human being that I could be. If I owed people something and I owed a lot of people something. so through that, you know, extreme machination of looking at myself through the hardest lens and Nicole, my wife and I saying the hardest things out loud, things that I would never tell another human being. like, okay, well, I'm going to say the hardest things out loud right now. And my deepest fears and my deepest pains and all these things. Not that we didn't have an amazing relationship before that, that, that opened us up as a couple and as a, partners. so I did all of that. Then I discovered yoga and meditation and crystals and that sort of kept my weight loss going and certainly kept the good human thing going. that the early part of me capturing all of my cancer stuff, well, I was still very much into that. Right. And so we call that the Jake 2.0, That everybody, my whole family, everybody that knows me, I drastically changed who I was, physically mentally emotionally and spiritually. I grew up in a born again Christian household and that didn't sit with me well later in my life. I realized that being spiritually fluid and taking the parts of Hinduism and Buddhism and Islam and Christianity that Shintoism from Japan the the parts of those things that apply to me and the parts of the things that make sense to me and Ultimately, they're all just about being the best person you can be right and so I right Correct. So I took right. just Right
Krystal with a K: Kind and good and morally sound and yeah, which is so crazy because so many people separate those and you're like, we all say the same thing in different ways. Right.
Jake: All the major religions say the exact same thing. just, I just take, take the pieces that, that makes sense to me. And they mostly fall into the Hindu and Buddhism realm. I found great solace in being a log floating down the river and not hitting either side, the old Buddhist tenant. and so that I'm in that mode, even after spending 10 years in the Marine Corps. I'm in the best shape of my life. am, I am, everything, I, and then, I'm an entrepreneur and then all of a sudden, there's, there's cancer, right? So in March of 23 and it's March or April, I don't know the exact date. I was putting on deodorant. And I was like, that's weird. And I literally just went on with my day. here's the thing. Men are never, ever, ever taught that if you find a lump, you tell somebody, right? Ever. that is taught in sixth grade fucking health class to every girl, but they separate the health class. so girls are taught whenever that health class is that is drilled into you, you know, you find a lump in that area, you tell somebody like immediately. So I go back and I try to, I try to remember, did I know that men could have breast cancer before I got breast cancer, right? I don't think that I did. I moved on and the next day I did the same thing and I was like, well, it's still there. That's weird. Okay. And that turned into four months.
Krystal with a K: What the fuck? Are you serious?
Jake: well, yeah. that turned into four months, which
Krystal with a K: Were you having pain or burning? Was it just just did you feel just a lump? Did was it getting bigger? Just stayed the
Jake: No, it was just a lump. It was just a lump in my armpit. Nope. Nope.
Krystal with a K: same.
Jake: Yep. so now we're in like July, And I had a primary care visit coming up in August. So I was like, I'll just ask him about it in August. I'm 52 years old at the time, I'm making my list of random shit that I need to get checked out when I go to my primary care visit, right? And I'm like weird lump in armpit or whatever I put, right? Just, just a thing. And I go to my primary care visit and we're checking out everything else. And I'm like, yeah, I got this weird thing going on up here. And he's like, all right, well, let me check out it. He looked at it he goes, yeah, that is pretty weird. And he listed off a handful of things that it could be. None of them were breast cancer. no,
Krystal with a K: Really? Not one.
Jake: no. I mean, and so he goes, well, let's. just an abundance of caution. Let's send you for a mammogram. And I was like, hold on, hold the fuck up. what are you talking about? Like, right, a mammogram.
Krystal with a K: No, sir. I have a penis. I don't need that.
Jake: I mean, my wife has been getting like, but that was my very first time of feeling like, wait, what the, like, I guess if you want to look at it, that's the very first time I felt emasculated. and that that would be something that we come up with, further on down the line. But that was probably the very, very first time that I was like, wait, that doesn't sound right. but I went and mammograms are hard for women, right? But I don't have a lot of flesh. And so they're giving me the mammogram and so they did my left side first just to see, and then they did my right side. And that's when they pushed it down. was like, there's something like when there's so little skin and tissue, but then that skin and tissue was filled with cancer and then you're squishing it. Like that was very painful. So they give me the.
Krystal with a K: And I'd imagine your pain tolerance is relatively high.
Jake: I thought so. mean it is. I I think so. but I was like, man, this is not great. I'm sitting there and you know, waiting for the scans to come up and I'm sitting there with the, I don't know if she was a mammogram tech or a nurse I'll never forget her though, because we were sitting there and it was dark in the room and I'm looking at this scan, right? It's up on the screen and I'm like, like. I even know what I'm looking at, right? Because this is my very first time seeing anything like this. So I'm like, can you tell me if I have breast cancer? And she goes, I can't. The radiologist needs to come in here and tell you. But she has been in a million of these rooms, right? She's seen a million yeses and she's seen a million noes. So she knows exactly what she's looking at. And she puts her hand on mine and she goes, all I can tell you is that you're. Your world is going to start moving incredibly fast and incredibly slow at the exact same time. And nothing has really been closer to the truth. mean, the past three years have gone by in, three weeks and have been 30 years, it's gone by incredibly fast and incredibly slow. that started this process of you have breast cancer. but that's, that's the beginning it's beyond just when a woman or somebody hears you have breast cancer, because you now you're in that fight, right? Now it's a, it's a totally different thing when it, when it's a man, when it's, when it's you
Krystal with a K: Yeah, I was gonna say, the only thing that got me a mammogram was my history of having cancer at thirty-two. and I will not say it's the same because you guys are still a a very small percentage, but you are out there. So when
Jake: Mm-hmm. Yep.
Krystal with a K: you're young, up until I mean again, for me it was eight years ago now, but then I knew nobody that was thirty two diagnosed with breast cancer. And so now within the last Two years, I think it's been more, hey, you can be younger and younger. But before that,
Jake: Right, right, right, right.
Krystal with a K: people would get gaslit by the medical professionals saying, You're too young, it's a cis, it's your menstrual cycle, would not even do what your doctor did and send them to get a mammogram just in case, which doesn't hurt anybody, especially if you have insurance. But
Jake: Just in case. Right.
Krystal with a K: I can only imagine what it would be like for you. And again, We hold in society different roles. Men hold completely different roles than women. Of course I'm a woman that believes in being equal and all of those things. But the reality is women function a certain way, emotionally, physically, and men do. And y first
Jake: Mm-hmm. Mm-hmm. Mm-hmm.
Krystal with a K: of all, men with breast cancer, again, very unheard of, very rare. But on top of that. You play a certain role. Like you said, you're supposed to be masculine. You're supposed to be the person that's strong, holds
Jake: Mm-hmm.
Krystal with a K: it all together, provides for your family i in a lot of situations, right? So
Jake: But it's even beyond that. mean, you're absolutely right. the the so my first six months in this disease, right? I think that's that's that's the part that we're at now, right? The first six months. I mean, I'm obviously I'm in chemo. I'm in surgeries. I had three surgeries. I had a mastectomy and then two more because they didn't get clear margins and and that kind of thing. Yeah.
Krystal with a K: With minuscule breast tissue. That's crazy.
Jake: Right. but that first six months, you're dealing with, you have cancer, right? And that's a whole mind fuck in and of its own, But then when you're dealing with a cancer that you don't belong in, Society says you don't belong in it or everything you've ever heard. So here's some statistics. cause then we can talk about what the word rare means, okay? So. Breast cancer in women is one in eight. One in eight women will get breast cancer, which is a fucking crazy number. I know, I know way
Krystal with a K: It's a ton of people. A ton of people.
Jake: more than eight women. Like I don't wait more than eight women in my family. Like, and to think that one of them statistically is going to go through it. Like that's crazy. Now men are one in 726, a much rarer number, right? But what I want you to really think about is, know, there are lottery winners on the news all the time that win Powerball, And those odds are like one in 22 fucking million and those people hit it. One in 728 isn't that much. If I entered a raffle with a one in 728 odds of winning a million dollars, I'd be thrilled. I'd be
Krystal with a K: Right.
Jake: thrilled. But one in 728 a breast dancer is ignored. And so 99 % of breast cancer cases are women. 1 % it's a little shy of 1 % it's like 0.98 % are men. That equals out to about 2800 guys a year, and that's just in this country, that's in America, 3000 people a year is not insignificant. that's right, right.
Krystal with a K: It's not nothing. It's a lot. Yeah, for sure.
Jake: And so, and then it's growing like a 10 years ago, it was 2,500 and now we're close to 3,000 and that number is increasing, statistically that's still very, very small in terms of the overall breast cancer cases, you start this process of how do I fit into the breast cancer world? And it probably just starts with you going home that night and just Googling breast cancer, right? Or just Googling, like just Googling
Krystal with a K: Which is the worst fucking thing to do ever. Like, Doctor Google No no recommendation for that. It's horrible. Don't do it.
Jake: Sure, once I know, right, the worst. when you're just, no, no. But when you're trying to find male breast cancer and it doesn't exist on Google, you're like, wait, what the fuck do I have? Like when Google doesn't have any answers for you, you're like, okay. So then you start digging a little bit deeper and you're like, well, I find best, I have the same disease, so I'm just gonna look at. Susan G Komen and breastcancer.org and these different places. I'm just going to look at the places that support breast cancer, right? And every picture on there is a 70 year old Caucasian white woman. And it's like, it's nothing to do with anything to do with me, Nothing. All the pronouns are she and her and everything is like, I can't even find a landing page that has male breast cancer on it. And so I'm like, my God. And I'm a I'm a marketing guy. have my MBA. I know how to communicate. And so at this point, I'm like, boy, this isn't like a problem with Dana Farber. This isn't a problem with Susan G Komen. This is a problem. and so I start just trying to figure out who's out there. There's about 2200 breast cancer organizations in this country. There are three that are for men. three and they're, they all do various forms of infighting. So I'm just like, all right, you I'll support you. But none of you are helping advance this mission. With that, you know, I wake up from my mastectomy. this is a, an example of the daily. Microaggressions, I don't like to use that word because it means a lot of other things mostly in the racism, but microaggressions works here. These are not people that are trying to be insensitive or mean. That's just what they've been taught, right? So I came out of my mastectomy and the nurses who were trying to be kind and I want to let them off the hook, they owe our nurses, they were like, hey, we didn't put a surgical bind on you. because all we had was with pink and flowers and I was like, A get some different color binds in here and B put it on me. It's a fucking medical device. Of course I'm going to wear it. But when you walk into a place and there's pink robes and pink waiting rooms or I've been to a place that only had a woman's changing room. when I go to Dana Farber and I live in Massachusetts and I, what are the, the most liberal state and Boston being the most liberal city and all the things, right? I go onto floor eight at Dana Farber and I step onto the Susan F. Smith Center for Women's Cancers. And I'm like, well, fuck me. guess I don't belong here. Right. And I, I, I worked in nonprofits. know how much Susan F. Smith paid for the, the honor of making that sign and having her name on the wall. get that. But like it's factually incorrect. I belong on that floor. My breast cancer says I belong on that floor. that's where when you start in this world, you're like, Jesus Christ, I don't fit in anywhere. And like finding a guy online that would talk about this, there was
Krystal with a K: No, you're not gonna get that.
Jake: tens of thousands of women capturing their journey on, on here. And I was like, wait, I'm just talking about breast cancer at that time. I'm not on my mission at that point, right? I'm just sort of documenting my chemo journey. doing what everybody else is doing on their cancer journey, just sort of documenting, hey, I'm in chemo now and it sucks, And then I looked around and I'm like, wait, there is nobody else like me, like nobody else like me. so I am misdiagnosed stage two, I become stage three. or I'm properly dazed. I was at a cancer center before I got to Dana-Farber. I got to Dana-Farber and they were like, no, you're stage three. That started a year long process because Dana Farber was like, believe you're stage four actually. And I'm like, hold up. I just came from this other cancer center, like stage two, everybody's telling me this whole time that I just have to do my fucking time in the chair, that I just got to go through this like everybody else does and I'm going to be just fine. And now you're telling me I'm stage fucking four? What the fuck? Like,
Krystal with a K: Well, and for people that don't know, obviously I do all types of stories. Stage four is incurable. That means you'll spend the rest of your life on treatment and with this disease and more than likely you're gonna die from it. It's the thing. Right.
Jake: This is the thing that's gonna take me out. So I tell people all the time that stage four, if you don't know what metastatic means and you don't know what stage four means, that's fine. Here's the real simple thing. Stage four equals metastatic. Those two things are synonymous, stage four and metastatic. So when you see metastatic breast cancer or stage four breast cancer, those are the same thing. They are not terminal. That is not what that means. Nobody has ever said, Jake, you've got three years to live, right? Nobody has ever said that to me, yeah. Yeah.
Krystal with a K: now that has shifted because my friend that ran the breast cancer nonprofit that I ended up taking over, she was stage four. And before they were given an expiration date, quote unquote, I'm sure that they figured out that that fucked with you mentally and they were like, Maybe we
Jake: Of
Krystal with a K: should stop treating people like a number. But that is something
Jake: Right.
Krystal with a K: within the last five to six years I've seen change. That is
Jake: Yeah, terminal is different because they're really starting to talk about even metastatic breast cancer as a chronic treatable disease, right? You're never gonna not have it, but it is a treatable disease, correct.
Krystal with a K: Right. But there's no cure for it. Yes.
Jake: the average age of a metastatic breast cancer patient or the average timeline is three years, I meet people all the time that are like, I'm 10 years in, I'm 14 years in, I'm 27 years in. And we all know how math works, right? For every person I meet that's 27 and the average lifespan is three years, there's a bunch of people not making it to those three years to average that out, right? And so like when I...
Krystal with a K: Correct. And right now we don't know the rhyme or reason as to why some people do not respond to treatment and they die within a year of that diagnosis
Jake: Correct.
Krystal with a K: and the people that are living on their second line of treatment for seventeen years. So it really boils down
Jake: Correct, we just don't know.
Krystal with a K: yeah. And but that doesn't mean that like when you hear stage four, again it's a mind fuck because what you know and what minimal you probably again, you're like The anomaly of the anomalies. You don't know
Jake: Mm-hmm, sure.
Krystal with a K: that many men diagnosed, let alone how long they've lived or what that statistic means for you. That's still a different thing.
Jake: So I've been in this fight for three years, right? the reason why we're chatting and the reason I get access and people want to talk to me is I've grown my audience to the largest audiences of male breast cancer in the world. That's what I have. I have 60,000 followers between the platforms. I've worked in marketing communications and social media for a very long time. And I understand that 60,000 followers does not an influencer make. However, 60,000 followers in the cancer community is a very different story.
Krystal with a K: Huge. This fucking horrible that we even have are having this discussion right now. But also you having
Jake: Right, right.
Krystal with a K: PR and marketing experience, why were you not gonna use that gift to fucking make sure that nobody like you had to do this alone anymore? Because there had to be a point, right? where you were like, I can feel like shit about this or I can do something about it. It sounds like you were like you said, you're the first one.
Jake: It was my very first moment of advocacy when I thought about someone else other than me. I thought about another cancer patient other than me was when I was leaving that previous cancer center, I'm not gonna go into the details, but they nearly killed me three times. The last time I was bleeding out on the... surgery table because they nicked a vein trying to get to a tumor and the emergency vascular team had to come and save me.
Krystal with a K: Holy shit.
Jake: But I brought them all in soon after that. my oncology team, my surgeon, my radiologist, the nurse navigator, everybody on there. I was gonna just, basically I was just gonna bitch about my care, right? And literally as I was driving there, I was like, well, that's not gonna do anything, Me just bitching about how you almost killed me isn't gonna do anything. So I turned it around and I made the entire thing about their policies and what they were doing, how they were acting based on the policies that the hospital had. And I said, listen, if I am the quote unquote top of the healthcare food chain, right? I am a self-insured white middle-aged middle income cisgendered straight male in America. If I'm the top of the fucking healthcare food chain. And you're doing this to me. What the fuck are you doing to the single Hispanic mother of two? You're railroading through her system. And she doesn't have the agency or the communication skills or even the transportation to get to Dana Farmer. She can't just up and leave you because you're fucking her. She just has to sit there and hope that you don't kill her. And so I made this plea and that was the beginning of this advocacy of just trying to make it better for other people.
Krystal with a K: Well, and you weren't limiting it just to men with breast cancer. You were thinking about
Jake: No, I was.
Krystal with a K: all people that might have to endure this.
Jake: And that's when I started shifting my messaging from men with breast cancer to really the metastatic breast cancer people. That's become my people since then, right? The male breast cancer community is too small. mean, it is too small, but more importantly, I've been in this for three years. I just went over my three year mark and that aforementioned, when you hit three years, like the three year day plus one is that's a mindfuck day. When you're living on borrowed time that first day, like that's a mindfuck day. That, yeah, right, right. when somebody, right.
Krystal with a K: With the clock, you're like, Are we done? What's going on up here? Am I gonna just slide down the fucking mountain? What's happening?
Jake: Right, where was that going?
Krystal with a K: Well you shifted your idea from male to metastatic.
Jake: Yes to metastatic. And the reason the yeah
Krystal with a K: Chemo brain, it's okay.
Jake: all the time the reason for that is because I am the leading spokesperson of metastatic male breast cancer in this country and I'm the leading male breast cancer person anywhere in the world. And I know three men with metastatic breast cancer three not three men I've met. Not three men that live in my town. I know three men in the world that have reached out to me or that are living their life publicly with metastatic breast cancer. Three, three other ones than me. So there's four of us in total. that is extremely isolating. so even the metastatic community, right? There's about 20,000 women that'll become metastatic every year. Which is that's a crazy number and of that there'll be about 200 men that go metastatic every year. So let's just do that math real quick in the three years that I've been in breast cancer 600 guys have gone metastatic not including all the ones that were already metastatic before them and.
Krystal with a K: And only four of you talk about it.
Jake: And there's four of us talking about
Krystal with a K: But that
Jake: the disease that is the most talked about disease in America like. That's the thing. Breast cancer is the most researched, the most talked about, the most funded, the most everything. All the other cancers are pissed at us. All the other cancers are like, know, yeah, I get it. Right. I get it.
Krystal with a K: yeah, they're they're hating hard. Cause we get a whole month. And I get it. Like I do get it. I do feel grateful. I again, there's mixed emotions. I am so grateful. But I'm also pissed as a breast cancer survivor because of the people that I know, because of the nonprofit, I have countless friends with stage four. I'm pissed that so much money and research is put in and we still don't have a fucking cure That's where I have a hard part.
Jake: but there's not, of all the money that is raised in breast cancer, Which is a lot of money per year, right? Whether you're talking about corporate sponsorships, whether you're talking about somebody writing a $5 check, everything, All the money that is given to breast cancer, between 2 and 5%, goes to metastatic breast cancer research. that's the only one that's gonna kill you Stage four is the only one that's gonna kill you two to 5 % goes to metastatic breast cancer research. So breast cancer is raising a ton of money. Is breast cancer giving that money to where it needs to go to end breast cancer? That's a much bigger question. And that's the question that
Krystal with a K: For sure.
Jake: you as a consumer need to be asking when you go out to TGI Fridays and support their breast cancer awareness month thing, how much money is going to breast cancer research? How much money is going to breast cancer at all? Just because an organization puts pink ribbons or has a pink drink on their thing doesn't mean that any of it is going to breast cancer. And chances are your waitress isn't going to know. I asked the waitress the other day, she's like, do you want our pink drink? And I was like, how much is going to metastatic breast cancer research? And she's like, and I'm like, I don't expect you to know that, right? But, but, right.
Krystal with a K: I'll let you off the hook. But no, it's you're accurate in that. And again, you've worked in nonprofit world too, right? and it depends on how big or small the nonprofit in my mine was very small. It was a local nonprofit. and I knew firsthand how much was going. And look, we were not putting it towards research. It was literally for mostly local. There are a couple of national programs for like financial assistance for them to pay their bills or for
Jake: Well, services. Of course, we certainly need that. Yeah.
Krystal with a K: sure. But the amount That you're saying, which is true, two to five percent are going to this. And then we're talking major corporations. So if you're a breast cancer muggle, let me explain this real quick. There's something called pink washing. Again, Jake and I are very hyper aware of it. And it unless you're in the breast cancer community, I don't even think you realize that it exists. So again, one in eight women.
Jake: Well, you probably do because you get really tired of all the pink washing happening every October. I mean, yeah, you just don't know what to call it. You're probably tired of it too.
Krystal with a K: All the pink shit. True. But but you also don't realize that what you're purchasing and where it goes to, and you don't know to ask the right questions. But that's why I truly love our community as much as social media comes with a lot of bullshit and trolls and fucked up things, because it does. And I deal with it all the time.
Jake: it does.
Krystal with a K: Especially as a woman who's outspoken. I do deal with that shit all of the time. And I'm sure as a male
Jake: Mm-hmm.
Krystal with a K: that's outspoken with breast cancer, you get some shit too. You get all the shit.
Jake: I
Krystal with a K: But that
Jake: right?
Krystal with a K: being said, in the last couple of years, it's been really cool to watch almost all of my breast cancer friends post about pink washing to educate everybody on it. And I'm hoping that that will change that two to five percent into much more. Stop buying shit from people because it's pink. that doesn't mean shit. ask them who they're giving it to, what the percentages are, and where's the money going? If it's going to a local nonprofit for financial assistance, or if it's going to research, or if it's just like, two percent's going to this, or if they don't know, don't fucking buy it. That's the biggest thing.
Jake: Right, right, if they don't know, if they don't know, that's the biggest red flag.
Krystal with a K: If they don't know, the answer's no, don't buy it. But
Jake: Right. Right.
Krystal with a K: s so sorry, I had to get on my soapbox about pink washing for a minute.
Jake: No, no, no, you're good. good. I've started navigating this and that's where my advocacy started, but I've also been trying to navigate where I land in this, There's about 20 % of the breast cancer world, the organized breast cancer world that do not want men involved in it. That do not want a male voice represented in it. I've been told straight to my face, men have too much. voice in this world, you're not taking mine away from me and I'm like, A, I agree with the first part of your sentence because men do have way too much voice in this world. But B, I'm not trying to fucking take yours away from you. I'm just trying to make people know that guys can get breast cancer. That's literally all I'm trying to do.
Krystal with a K: You just want representation for yourself as well.
Jake: And it's not equal. I, there's a lot of the male breast cancer guys that are looking for equality, not at all. It is 99 % to 1%. but we should have a voice. We should, we should be recognized that we're there. And more
Krystal with a K: Listen
Jake: importantly, every human being needs to know that they have breast tissue, right? Non-binary, transgender, male, female, doesn't fucking matter. if you're a human being. You've got breast tissue and that's what you need to know. So as I was going through this whole, trying to figure out who to work with, who not to work with, I start looking at different organizations when you say that things have been changing, things have been changing, especially in the male breast cancer realm. Because in the past two years, Susan G. Komen has put up a male breast cancer page on their page. The National Breast Cancer Foundation has been doing programming. This past year, Susan G. Komen approached me because they asked me to join their Metastatic Breast Cancer Steering Committee. I sit on a Susan G. Komen board and that's really important. Look, I get that lots of people have all kinds of issues with Komen. I have lots of issues with Komen, but I'm the first male patient they've ever asked to be on a board. they've had male doctors, they've had male fundraisers, but like that's
Krystal with a K: Well and maybe
Jake: a huge step, right? It's a huge step for all men with breast cancer to be included in this way because representation matters. I've been giving these platforms on Coleman and then I start working with organizations like Cancer Culture and MetaViver where I become ingrained in what they're doing. now what I do is I just spend my time supporting the organizations that A, want to work with me, B, spreading the word that men can get breast cancer and funny or entertaining or any kind of way that I can do it, right? And then, just trying to be that good human, We go back to the beginning of the story, Jake 2.0 after the stroke, I did all these things. For about a year, I was really wrestling with not that... I was reverting back, but Jake 2.0 didn't fit into cancer because I was angry and it just didn't fit into how I was trying to live. And it was really like last April, I had this epiphany is that I have to put Jake 2.0 through the lens of metastatic male breast cancer. And that's where you come up with Jake 3.0, which is I can be kind and be a good human and I can still tell you to fuck off. and all those things have a hard edge and that's where I'm at now, I be a good human, but I don't have to tolerate you being a shitty one. And so that's where Jake 3.0 came out of, Is this, it's to be a good human, the metastatic breast cancer hardened one of my edges. so that's the part that comes out on social sometimes and my rants But it also, I think helps people because It's not just the breast cancer people. It's not just the metastatic breast cancer people. get men, I get people with all kinds of rare diseases, not even cancer that are like, my gosh, you are talking for me. So I get a lot of people on my feed that are nothing to do with cancer that are like, thank you for talking in a way that I, if you took out male breast cancer and inserted my thing, that is exactly how I feel. And thank you for finally saying it. So, you know, I find.
Krystal with a K: think that's a human that's a human part, right? And again, if
Jake: I agree.
Krystal with a K: we take sex out of it, that's exactly why I started my podcast because I didn't want it to just be breast cancer. There are so many people with a human experience and they don't need to compare it to my shit because my shit is a trump
Jake: Hmm.
Krystal with a K: card. Cancer is a trump card. But people have all types of diseases, all types of fucked up things happen, trauma, abuse, everything. And so
Jake: Correct.
Krystal with a K: I think that when you're expressing yourself in an authentic way. That is what people connect with. And I get it. I honestly, I turned 40 and my give a fuck turned off. I I
Jake: Mmm.
Krystal with a K: truly, this last year, with the podcast, with being on social media, I don't have that many followers. Like you're killing it, as far as like that goes. But for me, I have for the first time ever been authentically myself as far as like what outwardly people see, people I don't know. And I stopped caring
Jake: Mm-hmm.
Krystal with a K: because I realized that the people that need it, that's more important than the people that might say some shit about it.
Jake: million percent.
Krystal with a K: And I'm grateful that I get to be that for some people because it also validates me and it helps fill my cup up and give this fucked up thing that happened to me purpose. So hate if you want to, but I'm I cannot tell you how many times, every day almost, I get a message from somebody either asking a question or saying thank you for me saying what they needed to hear. So
Jake: Mm-hmm.
Krystal with a K: I'm glad and I'm grateful that we have someone like you in the community. And obviously it sucks that like
Jake: Thank you.
Krystal with a K: Not every big wig, huh? What'd you say? It's yeah, it sucks that that's why we even met. I don't care what anybody says, sometimes you need a male voice. Like you guys know how to say shit at times when you really need it. And I but I also like I'm curious, I really want to know.
Jake: Sure
Krystal with a K: With you stepping into a mostly female community, I think it's different for men to do that into a women's community because
Jake: a million percent no, no.
Krystal with a K: Not not big wig, not big wig. I'm talking about other survivors. How supportive have they been of you?
Jake: almost everybody has been incredibly supportive. But I have to understand my role. When I go to breast cancer conferences, there's 150 women and me, When I just was doing my lobbying thing with Metafiber, there was 85 women and me, in the cancer community, right? We all have very strong opinions and we like to express them, Sometimes that can be interpreted as mansplaining and I never ever ever want to do that, So I have to walk around in the pink bubble really, really, really carefully I want to amplify women's voices, you see my social, I do it all the time. but I also need every day America to know that men can get breast cancer too. And at the end of the day, that's all I want you to know so that you at 52 years old, you're not putting on deodorant one day going, that's weird. And you wait four months. that's what I don't want to happen. So now every guy listening to this podcast, every guy listening to the alien podcast that I did yesterday, every, every guy that's listening anywhere. You now know that men can get breast cancer. So you can't use that excuse when you're 52 years old or whatever your age is, you just complimented my social media following. I, and I get sort of weirded out by that because here's the thing. It is not from my own hubris or not from my own ego. I have a video that went over a million views It's actually like a 1.1 million now. And the only thing I could care about. was that my username shows up there. And so a million people saw my video and then read the guy with stage four breast cancer and went, wait, I didn't know that was a thing
Krystal with a K: What?
Jake: or, right. And so, and then they moved on with their day, but 1.1 million people know that. And there has never been a male breast cancer advertising campaign in the history of mankind that has ever reached 1.1 million people. that's what I'm trying to do.
Krystal with a K: But you did it for yourself. You made it for yourself. And you made it for the other people that are. And I have two boys. so last week I had Marissa who was a BRCA. She's a I believe I can't remember w BRCA one or two. I'm I'm the worst chemo brain for real. but we talked about this. Men can pass that down, men can get breast cancer. It's really important for you
Jake: 100%.
Krystal with a K: to know that. Also, it's connected to other factors, other cancers. You need to know that as well. My children are going to be prepared. My children need to know that men can get breast cancer because I refuse after having it three times for them to not know preventative measures, for them to not be educated on their bodies. Like if you,
Jake: Yeah.
Krystal with a K: if nothing else. You prepare them and fucking God. I hope that by the time they're adults, there's way bigger. Yes,
Jake: this is a cure, right? It's all done
Krystal with a K: I can't live without worrying about that. That's not gonna be a thing. So
Jake: No, no.
Krystal with a K: you are a spokesperson that God forbid they grow up, they have this. I can say, look back at this guy. And by then, you're gonna be helping other people know it's okay to voice this. It's okay to be a man with breast cancer. There is a space for you. at the end of the day, you heard the words you have cancer. You're metastatic. You have a place here, just like pre-vivors have a place here. and I doesn't mean you don't have your own personal struggles with it. We all do. But like
Jake: I, sure, sure.
Krystal with a K: What are we gonna fucking do about it is the thing. And you're doing the thing.
Jake: We're all in this together. I appreciate that so much. I try and there's probably not a week that goes by. sit there and I go, what the fuck am I doing? Like, what am I doing?
Krystal with a K: Same.
Jake: What am I doing? And then I receive like those messages. mean, I'm at the point now where I can't answer every DM that comes in, because I get so many that come in now. I will. certainly glance and I read almost all of them, but really what I do is if there's a guy that reaches out to me and so far I'm like, I'm like, for 10, which is great that I want to, I want to keep this over because I've had like 10 guys reach out to me that are like, I found a lump. I'm really scared. And, and, and I say, first thing I say is, well, I'm not going to be the one to tell you have cancer or not to, you need to go to the doctor tomorrow. You need to make an appointment and go tomorrow. said, secondarily, you need to understand that I, and the anomaly that I'm the unicorn, that I'm the person that you don't need to be afraid of you have a 1 % chance it's a 99 % chance that it's not breast cancer. And that's what I want for you, brother. Like, I don't want you to have this. And so, so far I'm for 10. I've had 10 guys come to me and tell me, and then 10 guys have not had it. and it's eventually there's going to be a guy
Krystal with a K: But how cool
Jake: that does.
Krystal with a K: but how cool is it that you are that space that they as men, again, this is a thing society puts on you. You're not allowed to talk about being afraid. You're not allowed to talk about being scared. That is such a rare thing. So for you to be able to I can't wait.
Jake: You gotta watch my rant tomorrow, which is all about, this is all about men with breast cancer. It's all about finding
Krystal with a K: You
Jake: more than three guys with breast cancer. That's my rant tomorrow. I've already filmed it today.
Krystal with a K: Are you on like a on a search, like a where's Waldo for the male breast cancer? You should be you should be at this point.
Jake: I well, actually in this in this video I ask I ask the rest of the metastatic community to help me which is something I've never done before I'm like women in the metastatic community you need to help me find the men because they are suffering I get the benefit out of being loved and supported by this community and they are literally suffering in silence at home. I'll share one last story with you because There was a guy that wrote to me about two months ago and he said, I've been following you for a year. Never commented, never liked anything. Never certainly never shared anything. But a week ago you were talking about just being brave. one of the things I talk about a lot of my social is just be brave. And, he said, I had stage two breast cancer. 10 years ago and five people in my life knew that. My wife, my two kids and my parents. Everybody else just knew I had cancer or I was sick and I could never have brought myself to say the word breasts or breast tissue or breast cancer or whatever. But I've been watching you for a year. And you finally made me brave enough to change my Facebook profile to stage two breast cancer survivor. Cause I've never told anybody about it. And I told him, I was so proud of him. and he said, I feel like such an idiot because the amount of love and support that I received since I changed that and people reaching out and just wishing that I didn't suffer through that. I asked him if I could share this story because I wouldn't if he told me no, but when we talk about the 600 guys since I've been diagnosed 300 guys a year and I know three, that's what those other 597 guys are doing at home. They are suffering in silence because the world and society have told them that they have a woman's disease and they're not worthy of being men it's really, really, really difficult. I am as open and as liberal and all the things that you can be. And I have a hard time in it. I can't imagine somebody that isn't as open and isn't as communicative. I'm not blaming you. I'm telling you that I see you and I understand how hard it is. And so if you want to reach out to me, I don't care that you can't do this publicly. I just want you to know that you don't have to be alone. that's what you need to know. that you don't have to do this alone. And I don't ever have to utter your name on my social media. I don't ever have to say that I found another guy. But you don't need to be alone in this. That's literally my mission, is that men don't have to feel alone in this disease. there is community, there's lots of people out there that don't want you in their community, but there's a fuck ton of people that do. So find your community, do your part and... It's gonna make this really, really, really shitty thing just a little bit easier.
Krystal with a K: I agree completely. And I'm grateful that you get to be that person that they can reach out to. And that goes for me too. I'm not a man, I don't have a penis, but I don't care if you do or not. if you have been through something hard, you should never have to stand alone in it. And there are a lot of people that can be out there, especially if they fought the same monster as you, like cancer. Then they are your people. You will find them and don't suffer in silence. So, Jake, you're a fucking badass. I'm grateful that you came on and you made time. I know you've been busy as fuck. I thought you were so cool for doing 60 miles in three days. I was like, Jesus Christ, we we finally made it happen because you've been busy as fuck advocating. And dude, wild.
Jake: September and October have been nuts. I've been crazy. So yeah, but I appreciate making this happen. Yeah, thank you so much.
Krystal with a K: Yeah, and if Yeah, and we just want everybody to know at home that aliens actually cause cancer, so that's really the reason we're here. I'm just kidding. It's true. It's breaking news. That's right. He came along and then men, they insert it in the women. anyway That's how it goes. No, but
Jake: It's true. This is breaking news right now. I am actually an alien. I'm an alien and I cause cancer. Those are the things that I want you to know. Right. Right, right. That's great.
Krystal with a K: Plata is still alive. You're still alive. I'm grateful you're here. can you tell me how people can find you and those men? So I'll be helping do the call, the males with breast cancer. Can you give us your socials and where they can find you?
Jake: Sure. Thank you. Sure. You can't really type in male breast cancer online without finding me, but if you want to find me directly, I have a website, which is the easiest. It's www.theguywithstagefourbreastcancer, numerical four, it's a four number. It's the guywithstagefourbreastcancer.com. And then from there, I'm on TikTok as the guywithstagefourbreastcancer. I'm on Instagram as the guywithstagefourbreastcancer. and I'm on Facebook as Jake Messier because that used to be my personal place, but then so many people were following me that I was like, fuck it, and I just opened it up I'm not hard to find.
Krystal with a K: And I will also create a blog. I love giving people resources. So I will create a blog with all the info that you already sent me because you're a badass. And and that's at PlotTwist StillAlive.com. And you can find me on Instagram and TikTok being really cringy at 40 years old, and I don't give a fuck. And not having nipples, but now having nipples. on Instagram as well. that's really all I have to say. So we have to end this shit the right way though. So we always do a high five. So you're gonna high five the camera. Go ahead.
Jake: Yep. Yep. Yep.
Krystal with a K: All right, still alive and now you have
Jake: Got it.
Krystal with a K: to do your evil laugh. Evil laugh, go. You have to do one. It's required.
Jake: to do one? All right. All right. Hold on. I gotta get into character. I was unprepared for this. I was unprepared for
Krystal with a K: Warm it up. I didn't tell you. I didn't tell you.
Jake: All right, hold on. Mwah ha ha ha ha! Was that? Yours was way more evil. Actually, you reminded me from the guy in the Hunger Games, played by Stanley Tucci when he's on the stage, and he's like ha ha ha ha, he does the whole, he looks, he's the news guy, and he looks, he's really great. Right? That's great. So.
Krystal with a K: Which one? I love Stanley Tucci. Yes. Yes. I'll take it, baby. I'll take it. I love Stanley. Stanley, I love you. Okay, well, thank you so much for being here.
Jake: Thank you so much, friend. It was great.
Krystal with a K: And I'll talk to you later.
Jake: you
Krystal with a K: with the most is three-time cancer survivor and chaos coordinator, Crystal with a K. I just realized I didn't do that last time. I was fucking crusty, dusty, rusty since I haven't done an episode in like a month. it is officially bomb bomb bomb breast cancer awareness month. And obviously I'm hyper fucking aware. But I'm not the only one. There are a lot of people that are aware that it is Breast Cancer Awareness Month. I love Halloween. I am obsessed with it. cancer kind of stole that from me. So we're gonna do a mix
Jake: Okay.
Krystal with a K: But one thing I really wanted to do is talk to people that you're not aware of in the breast cancer community or something that is under educated on. today we're gonna have Jake. Jake the snake, Jacob. he definitely uses dark humor because he calls himself the guy with stage four cancer. So I love that very much. everybody help me welcome. Jake. How you doing, Jake?
Jake: Hey, thank you, thank you. So I'm good, I'm good. It's another day during breast cancer awareness month, so I'm fine.
Krystal with a K: Ho hooray? yeah, it's
Jake: Hooray! I'm very aware. I'm very aware. Very aware. Right, right.
Krystal with a K: You are very, very aware. Yeah, it definitely comes with a mixed bag of emotions. I think this is the first year I've been able to actually authentically talk about my feelings, and I've been dealing with this eight years on and off. a little bit about me, because I I know you probably know this much. You meet a lot of us, a lot of us folk. But I was diagnosed with childhood cancer at three years old. I had radiation and chemotherapy. Thirty years later, that radiation caused breast cancer. So at 32, di diagnosed with breast cancer, double mastectomy, six months of red double and taxol, and then thought I was good. It was a nipple sparing. five years, my golden year, I got rediagnosed with more breast cancer. It was DCIS, so most of it was just removal. But I ended
Jake: Wow, sure.
Krystal with a K: up doing a deep flap because the tissue that was radiated, like at almost forty, it didn't want to heal. So I had to like hyperbaric chamber,
Jake: Mm-hmm.
Krystal with a K: all that shit. So
Jake: Sure.
Krystal with a K: Very long story short, I don't know that cancer will ever not be part of my life anymore. I also helped run a breast cancer nonprofit during four years of that time and was rediagnosed during that. And I had to like put on this happy face and be this,
Jake: Mm.
Krystal with a K: you know, this beacon of hope at times that on the inside I was like, I'm not fucking okay. There's no way I'm okay.
Jake: Mm-hmm.
Krystal with a K: And I'm sure that you get that. So I don't I don't think people that are cancer muggles or don't have breast cancer
Jake: Right
Krystal with a K: don't get why this is such a complicated month for us. And while we can be appreciative of it, we also have a lot of other feelings about it.
Jake: love the story. great.
Krystal with a K: thanks. My listeners might know it. Who knows? If they jump in now, they didn't, but whatever. these unloyal bitches. No. there's always a BC before cancer, right? I wanna know a little bit about who you were prior to this.
Jake: sure. Well, I grew up in central Massachusetts. If we're go way back, right? Let's go way back. I grew up in central Massachusetts and well,
Krystal with a K: Take me all the way back. Nineteen ninety one.
Jake: I'm a little bit older.
Krystal with a K: Okay.
Jake: 1971, I was born in central Massachusetts, but way back in the late 1900s. so, I grew up in sort of normal white bread. Central Massachusetts, went off to college and sort of did the normal thing, but I didn't really know what I wanted to do at the time. after three years of college, my father was really thrilled about this. When I told him I was going to drop out after my junior year, but I changed my major three times. I didn't know what I wanted to do. I was lost. And so I joined the Marine Corps after those years. And I spent 10 years in the Marine Corps. as a combat cameraman, combat correspondent. really a reporter in the military. I was a morning show DJ, like Good Morning Vietnam, and I was a news anchor and all of those things. That was my job in the Marine Corps, which was like,
Krystal with a K: Holy shit.
Jake: there's way, there's way worse jobs to have in the Marine Corps, right? I had, I had what I could.
Krystal with a K: For sure, but you're holding a camera versus a gun, so I don't know I don't know. Okay.
Jake: Well, I had, I had a sidearm, so I would have my camera on my shoulder, but I would have, I didn't have a rifle. I would have a sidearm and I only had to deploy that a couple of times, but we're, we're that's a different podcast. go.
Krystal with a K: That's another story. You'll come on for that next time when we do veterans
Jake: so I got out of the Marine Corps at after 10 years and I decided that Massachusetts wasn't so bad. So I came back here and then sort of built my career, on that. storytelling modality, right? Whether it be journalism or print journalism, broadcast, digital. I became a marketing guy and sort of navigated my way through the Boston nonprofit marketing ecosystem. So I was the director of marketing at WGBH and I was the director of marketing at Antiques Roadshow. They bumped me up from WGBH to PBS National. I went to Antiques Roadshow. I tell people all the time, I'm like, if you think the deployment schedule in the Marine Corps is bad, like try the Antiques Roadshow. have no idea.
Krystal with a K: Really?
Jake: Antiques Roadshow I only did one season after the year. was like, listen, guys, I need to see my family again. I need to go back. So I got off the Antiques Roadshow. But then, navigating, was the head of marketing at the Boston Conservatory and a bunch of other places. Right. I then tried my hand at the nonprofit marketing agency life. And I had the largest nonprofit marketing agency. We had 14 people, which is not a big agency, but it's big for a nonprofit agency, And when I got sick, you know, I was originally diagnosed stage two. And so probably, you know, and my story is that I was misdiagnosed stage two. I probably should have been diagnosed stage three. And then that morphed into stage four. But when I was first diagnosed, much like you, did chemo and radiation and surgeries and I was on the red devil and taxol and I did five months of that. I would do chemo in the morning and in the afternoon I'd come back and I'd do client calls and I'd write social calendars and I'd write press releases and I had 14 people depending on me, I couldn't just stop working, right? So, We kept doing that for the two years really that I was undergoing treatment. I would do all my treatment and then I'd, you it's not just like working though, it's running your own business, right? It's all these things that come with running your own business. It's the taxes, it's the insurance, it's all the small business headaches that come with it. So after I was told I was metastatic, right, after about two years, it was at that time that I sort of shifted and I changed because I was like, listen, I was doing all that just under the assumption that I was going to be better, right? That I was, that was a temporary thing. But then when it wasn't a temporary thing anymore, that's when I shut down my agency and it wasn't a sad thing. I, I sold it to my trusted Lieutenant who had been with me the entire seven years and she's still running it off on her own and it has great clients and all that stuff. But that was sort of me in a nutshell, another thing that's that's critical to this story is that in 2018, I also had a stroke. had a level four ischemic stroke. Yeah. Sure. Yep.
Krystal with a K: So just for a second, so I can keep my time frame, what year were you diagnosed initially with breast cancer?
Jake: 2023. actually, yeah,
Krystal with a K: so you had the stroke before.
Jake: so actually the stroke sort of in and the subsequent part of that is actually a huge part of my story, right? So in 2018, I was over 300 pounds. I was drinking excessively. I was completely stressed out on all those jobs that I had those high pressure jobs of promoting. I was completely stressed out at work and I had a stroke. And it wasn't the wake up call that I think it probably should have been. I just was like, man, I survived that. Okay, well, I made right, right. I made some changes,
Krystal with a K: Back to work I go. Right?
Jake: but it wasn't a, it wasn't any major changes for probably, you know, close to over a year. And I was well. over 300 and I don't know what I was approaching because I stopped weighing myself. And those of you who ever been on a weight loss journey, when you stop weighing yourself, it's never good, right? You just don't do that. So I stopped.
Krystal with a K: You don't want to know anymore.
Jake: Right. And so I just didn't know. So I was going to use the new year of 2020 as my losing weight. listen, I had done this for decades, right? I would lose 40 pounds and then I gained 50 back, right? And then I'd lose 30 pounds and all going back and forth new year of 2020, new year knew me, I'm gonna make it happen, right? And so I did and I, you know, I start my changes and I start dieting and I start doing little walks. And then if you remember 10 weeks into 2020 comes COVID and Everybody. if you remember the first six months of COVID, everybody was just out there walking, right? Cause there was literally nothing else to do. So everybody's just out there walking their dogs and people buying dogs to go out and walk and everybody just walking. Cause there was social distancing, but just out there walking. Right. And I walked off 120 pounds. and through yoga.
Krystal with a K: Just from walking.
Jake: that's the other part of the story is that's different than every other time that I, that I'd done it because during this process during COVID I was thinking about humanity and thinking about my own humanity and thinking about people being better humans and all of this. I decided to, instead of just losing the weight, look at myself emotionally, spiritually, mentally, all facets of my life. And what I decided to do is I decided to flip over every rock in my soul. And I did two years of very, very deep. therapy and analysis into my life into the places that I needed to apologize for the things that I had done right the things that I had done wrong It was sort of a complete Reckoning of who I was and how I could live a better life not just physically but as a human being when you get to me, sort of looking at everything in my life, I then made a list of about 80 people that I heard apologies to that things that I had done in my life. Some of them were college girlfriends that I hadn't spoken to in 25 years. Some of them were people that I was colleagues with that I had fucked over Some of them were Marines that I had spoken poorly about, know, that I knew for 10 minutes but I hunted all these people down and I apologized to them. And some of them were like, I don't remember that. And some of them were like, fuck you, that still really affects me. And some of them were like, that's cool. But I did my work, right? That was what was the most important thing for me is that I did my work so that I couldn't be the best version of myself. I couldn't be the best human being that I could be. If I owed people something and I owed a lot of people something. so through that, you know, extreme machination of looking at myself through the hardest lens and Nicole, my wife and I saying the hardest things out loud, things that I would never tell another human being. like, okay, well, I'm going to say the hardest things out loud right now. And my deepest fears and my deepest pains and all these things. Not that we didn't have an amazing relationship before that, that, that opened us up as a couple and as a, partners. so I did all of that. Then I discovered yoga and meditation and crystals and that sort of kept my weight loss going and certainly kept the good human thing going. that the early part of me capturing all of my cancer stuff, well, I was still very much into that. Right. And so we call that the Jake 2.0, That everybody, my whole family, everybody that knows me, I drastically changed who I was, physically mentally emotionally and spiritually. I grew up in a born again Christian household and that didn't sit with me well later in my life. I realized that being spiritually fluid and taking the parts of Hinduism and Buddhism and Islam and Christianity that Shintoism from Japan the the parts of those things that apply to me and the parts of the things that make sense to me and Ultimately, they're all just about being the best person you can be right and so I right Correct. So I took right. just Right
Krystal with a K: Kind and good and morally sound and yeah, which is so crazy because so many people separate those and you're like, we all say the same thing in different ways. Right.
Jake: All the major religions say the exact same thing. just, I just take, take the pieces that, that makes sense to me. And they mostly fall into the Hindu and Buddhism realm. I found great solace in being a log floating down the river and not hitting either side, the old Buddhist tenant. and so that I'm in that mode, even after spending 10 years in the Marine Corps. I'm in the best shape of my life. am, I am, everything, I, and then, I'm an entrepreneur and then all of a sudden, there's, there's cancer, right? So in March of 23 and it's March or April, I don't know the exact date. I was putting on deodorant. And I was like, that's weird. And I literally just went on with my day. here's the thing. Men are never, ever, ever taught that if you find a lump, you tell somebody, right? Ever. that is taught in sixth grade fucking health class to every girl, but they separate the health class. so girls are taught whenever that health class is that is drilled into you, you know, you find a lump in that area, you tell somebody like immediately. So I go back and I try to, I try to remember, did I know that men could have breast cancer before I got breast cancer, right? I don't think that I did. I moved on and the next day I did the same thing and I was like, well, it's still there. That's weird. Okay. And that turned into four months.
Krystal with a K: What the fuck? Are you serious?
Jake: well, yeah. that turned into four months, which
Krystal with a K: Were you having pain or burning? Was it just just did you feel just a lump? Did was it getting bigger? Just stayed the
Jake: No, it was just a lump. It was just a lump in my armpit. Nope. Nope.
Krystal with a K: same.
Jake: Yep. so now we're in like July, And I had a primary care visit coming up in August. So I was like, I'll just ask him about it in August. I'm 52 years old at the time, I'm making my list of random shit that I need to get checked out when I go to my primary care visit, right? And I'm like weird lump in armpit or whatever I put, right? Just, just a thing. And I go to my primary care visit and we're checking out everything else. And I'm like, yeah, I got this weird thing going on up here. And he's like, all right, well, let me check out it. He looked at it he goes, yeah, that is pretty weird. And he listed off a handful of things that it could be. None of them were breast cancer. no,
Krystal with a K: Really? Not one.
Jake: no. I mean, and so he goes, well, let's. just an abundance of caution. Let's send you for a mammogram. And I was like, hold on, hold the fuck up. what are you talking about? Like, right, a mammogram.
Krystal with a K: No, sir. I have a penis. I don't need that.
Jake: I mean, my wife has been getting like, but that was my very first time of feeling like, wait, what the, like, I guess if you want to look at it, that's the very first time I felt emasculated. and that that would be something that we come up with, further on down the line. But that was probably the very, very first time that I was like, wait, that doesn't sound right. but I went and mammograms are hard for women, right? But I don't have a lot of flesh. And so they're giving me the mammogram and so they did my left side first just to see, and then they did my right side. And that's when they pushed it down. was like, there's something like when there's so little skin and tissue, but then that skin and tissue was filled with cancer and then you're squishing it. Like that was very painful. So they give me the.
Krystal with a K: And I'd imagine your pain tolerance is relatively high.
Jake: I thought so. mean it is. I I think so. but I was like, man, this is not great. I'm sitting there and you know, waiting for the scans to come up and I'm sitting there with the, I don't know if she was a mammogram tech or a nurse I'll never forget her though, because we were sitting there and it was dark in the room and I'm looking at this scan, right? It's up on the screen and I'm like, like. I even know what I'm looking at, right? Because this is my very first time seeing anything like this. So I'm like, can you tell me if I have breast cancer? And she goes, I can't. The radiologist needs to come in here and tell you. But she has been in a million of these rooms, right? She's seen a million yeses and she's seen a million noes. So she knows exactly what she's looking at. And she puts her hand on mine and she goes, all I can tell you is that you're. Your world is going to start moving incredibly fast and incredibly slow at the exact same time. And nothing has really been closer to the truth. mean, the past three years have gone by in, three weeks and have been 30 years, it's gone by incredibly fast and incredibly slow. that started this process of you have breast cancer. but that's, that's the beginning it's beyond just when a woman or somebody hears you have breast cancer, because you now you're in that fight, right? Now it's a, it's a totally different thing when it, when it's a man, when it's, when it's you
Krystal with a K: Yeah, I was gonna say, the only thing that got me a mammogram was my history of having cancer at thirty-two. and I will not say it's the same because you guys are still a a very small percentage, but you are out there. So when
Jake: Mm-hmm. Yep.
Krystal with a K: you're young, up until I mean again, for me it was eight years ago now, but then I knew nobody that was thirty two diagnosed with breast cancer. And so now within the last Two years, I think it's been more, hey, you can be younger and younger. But before that,
Jake: Right, right, right, right.
Krystal with a K: people would get gaslit by the medical professionals saying, You're too young, it's a cis, it's your menstrual cycle, would not even do what your doctor did and send them to get a mammogram just in case, which doesn't hurt anybody, especially if you have insurance. But
Jake: Just in case. Right.
Krystal with a K: I can only imagine what it would be like for you. And again, We hold in society different roles. Men hold completely different roles than women. Of course I'm a woman that believes in being equal and all of those things. But the reality is women function a certain way, emotionally, physically, and men do. And y first
Jake: Mm-hmm. Mm-hmm. Mm-hmm.
Krystal with a K: of all, men with breast cancer, again, very unheard of, very rare. But on top of that. You play a certain role. Like you said, you're supposed to be masculine. You're supposed to be the person that's strong, holds
Jake: Mm-hmm.
Krystal with a K: it all together, provides for your family i in a lot of situations, right? So
Jake: But it's even beyond that. mean, you're absolutely right. the the so my first six months in this disease, right? I think that's that's that's the part that we're at now, right? The first six months. I mean, I'm obviously I'm in chemo. I'm in surgeries. I had three surgeries. I had a mastectomy and then two more because they didn't get clear margins and and that kind of thing. Yeah.
Krystal with a K: With minuscule breast tissue. That's crazy.
Jake: Right. but that first six months, you're dealing with, you have cancer, right? And that's a whole mind fuck in and of its own, But then when you're dealing with a cancer that you don't belong in, Society says you don't belong in it or everything you've ever heard. So here's some statistics. cause then we can talk about what the word rare means, okay? So. Breast cancer in women is one in eight. One in eight women will get breast cancer, which is a fucking crazy number. I know, I know way
Krystal with a K: It's a ton of people. A ton of people.
Jake: more than eight women. Like I don't wait more than eight women in my family. Like, and to think that one of them statistically is going to go through it. Like that's crazy. Now men are one in 726, a much rarer number, right? But what I want you to really think about is, know, there are lottery winners on the news all the time that win Powerball, And those odds are like one in 22 fucking million and those people hit it. One in 728 isn't that much. If I entered a raffle with a one in 728 odds of winning a million dollars, I'd be thrilled. I'd be
Krystal with a K: Right.
Jake: thrilled. But one in 728 a breast dancer is ignored. And so 99 % of breast cancer cases are women. 1 % it's a little shy of 1 % it's like 0.98 % are men. That equals out to about 2800 guys a year, and that's just in this country, that's in America, 3000 people a year is not insignificant. that's right, right.
Krystal with a K: It's not nothing. It's a lot. Yeah, for sure.
Jake: And so, and then it's growing like a 10 years ago, it was 2,500 and now we're close to 3,000 and that number is increasing, statistically that's still very, very small in terms of the overall breast cancer cases, you start this process of how do I fit into the breast cancer world? And it probably just starts with you going home that night and just Googling breast cancer, right? Or just Googling, like just Googling
Krystal with a K: Which is the worst fucking thing to do ever. Like, Doctor Google No no recommendation for that. It's horrible. Don't do it.
Jake: Sure, once I know, right, the worst. when you're just, no, no. But when you're trying to find male breast cancer and it doesn't exist on Google, you're like, wait, what the fuck do I have? Like when Google doesn't have any answers for you, you're like, okay. So then you start digging a little bit deeper and you're like, well, I find best, I have the same disease, so I'm just gonna look at. Susan G Komen and breastcancer.org and these different places. I'm just going to look at the places that support breast cancer, right? And every picture on there is a 70 year old Caucasian white woman. And it's like, it's nothing to do with anything to do with me, Nothing. All the pronouns are she and her and everything is like, I can't even find a landing page that has male breast cancer on it. And so I'm like, my God. And I'm a I'm a marketing guy. have my MBA. I know how to communicate. And so at this point, I'm like, boy, this isn't like a problem with Dana Farber. This isn't a problem with Susan G Komen. This is a problem. and so I start just trying to figure out who's out there. There's about 2200 breast cancer organizations in this country. There are three that are for men. three and they're, they all do various forms of infighting. So I'm just like, all right, you I'll support you. But none of you are helping advance this mission. With that, you know, I wake up from my mastectomy. this is a, an example of the daily. Microaggressions, I don't like to use that word because it means a lot of other things mostly in the racism, but microaggressions works here. These are not people that are trying to be insensitive or mean. That's just what they've been taught, right? So I came out of my mastectomy and the nurses who were trying to be kind and I want to let them off the hook, they owe our nurses, they were like, hey, we didn't put a surgical bind on you. because all we had was with pink and flowers and I was like, A get some different color binds in here and B put it on me. It's a fucking medical device. Of course I'm going to wear it. But when you walk into a place and there's pink robes and pink waiting rooms or I've been to a place that only had a woman's changing room. when I go to Dana Farber and I live in Massachusetts and I, what are the, the most liberal state and Boston being the most liberal city and all the things, right? I go onto floor eight at Dana Farber and I step onto the Susan F. Smith Center for Women's Cancers. And I'm like, well, fuck me. guess I don't belong here. Right. And I, I, I worked in nonprofits. know how much Susan F. Smith paid for the, the honor of making that sign and having her name on the wall. get that. But like it's factually incorrect. I belong on that floor. My breast cancer says I belong on that floor. that's where when you start in this world, you're like, Jesus Christ, I don't fit in anywhere. And like finding a guy online that would talk about this, there was
Krystal with a K: No, you're not gonna get that.
Jake: tens of thousands of women capturing their journey on, on here. And I was like, wait, I'm just talking about breast cancer at that time. I'm not on my mission at that point, right? I'm just sort of documenting my chemo journey. doing what everybody else is doing on their cancer journey, just sort of documenting, hey, I'm in chemo now and it sucks, And then I looked around and I'm like, wait, there is nobody else like me, like nobody else like me. so I am misdiagnosed stage two, I become stage three. or I'm properly dazed. I was at a cancer center before I got to Dana-Farber. I got to Dana-Farber and they were like, no, you're stage three. That started a year long process because Dana Farber was like, believe you're stage four actually. And I'm like, hold up. I just came from this other cancer center, like stage two, everybody's telling me this whole time that I just have to do my fucking time in the chair, that I just got to go through this like everybody else does and I'm going to be just fine. And now you're telling me I'm stage fucking four? What the fuck? Like,
Krystal with a K: Well, and for people that don't know, obviously I do all types of stories. Stage four is incurable. That means you'll spend the rest of your life on treatment and with this disease and more than likely you're gonna die from it. It's the thing. Right.
Jake: This is the thing that's gonna take me out. So I tell people all the time that stage four, if you don't know what metastatic means and you don't know what stage four means, that's fine. Here's the real simple thing. Stage four equals metastatic. Those two things are synonymous, stage four and metastatic. So when you see metastatic breast cancer or stage four breast cancer, those are the same thing. They are not terminal. That is not what that means. Nobody has ever said, Jake, you've got three years to live, right? Nobody has ever said that to me, yeah. Yeah.
Krystal with a K: now that has shifted because my friend that ran the breast cancer nonprofit that I ended up taking over, she was stage four. And before they were given an expiration date, quote unquote, I'm sure that they figured out that that fucked with you mentally and they were like, Maybe we
Jake: Of
Krystal with a K: should stop treating people like a number. But that is something
Jake: Right.
Krystal with a K: within the last five to six years I've seen change. That is
Jake: Yeah, terminal is different because they're really starting to talk about even metastatic breast cancer as a chronic treatable disease, right? You're never gonna not have it, but it is a treatable disease, correct.
Krystal with a K: Right. But there's no cure for it. Yes.
Jake: the average age of a metastatic breast cancer patient or the average timeline is three years, I meet people all the time that are like, I'm 10 years in, I'm 14 years in, I'm 27 years in. And we all know how math works, right? For every person I meet that's 27 and the average lifespan is three years, there's a bunch of people not making it to those three years to average that out, right? And so like when I...
Krystal with a K: Correct. And right now we don't know the rhyme or reason as to why some people do not respond to treatment and they die within a year of that diagnosis
Jake: Correct.
Krystal with a K: and the people that are living on their second line of treatment for seventeen years. So it really boils down
Jake: Correct, we just don't know.
Krystal with a K: yeah. And but that doesn't mean that like when you hear stage four, again it's a mind fuck because what you know and what minimal you probably again, you're like The anomaly of the anomalies. You don't know
Jake: Mm-hmm, sure.
Krystal with a K: that many men diagnosed, let alone how long they've lived or what that statistic means for you. That's still a different thing.
Jake: So I've been in this fight for three years, right? the reason why we're chatting and the reason I get access and people want to talk to me is I've grown my audience to the largest audiences of male breast cancer in the world. That's what I have. I have 60,000 followers between the platforms. I've worked in marketing communications and social media for a very long time. And I understand that 60,000 followers does not an influencer make. However, 60,000 followers in the cancer community is a very different story.
Krystal with a K: Huge. This fucking horrible that we even have are having this discussion right now. But also you having
Jake: Right, right.
Krystal with a K: PR and marketing experience, why were you not gonna use that gift to fucking make sure that nobody like you had to do this alone anymore? Because there had to be a point, right? where you were like, I can feel like shit about this or I can do something about it. It sounds like you were like you said, you're the first one.
Jake: It was my very first moment of advocacy when I thought about someone else other than me. I thought about another cancer patient other than me was when I was leaving that previous cancer center, I'm not gonna go into the details, but they nearly killed me three times. The last time I was bleeding out on the... surgery table because they nicked a vein trying to get to a tumor and the emergency vascular team had to come and save me.
Krystal with a K: Holy shit.
Jake: But I brought them all in soon after that. my oncology team, my surgeon, my radiologist, the nurse navigator, everybody on there. I was gonna just, basically I was just gonna bitch about my care, right? And literally as I was driving there, I was like, well, that's not gonna do anything, Me just bitching about how you almost killed me isn't gonna do anything. So I turned it around and I made the entire thing about their policies and what they were doing, how they were acting based on the policies that the hospital had. And I said, listen, if I am the quote unquote top of the healthcare food chain, right? I am a self-insured white middle-aged middle income cisgendered straight male in America. If I'm the top of the fucking healthcare food chain. And you're doing this to me. What the fuck are you doing to the single Hispanic mother of two? You're railroading through her system. And she doesn't have the agency or the communication skills or even the transportation to get to Dana Farmer. She can't just up and leave you because you're fucking her. She just has to sit there and hope that you don't kill her. And so I made this plea and that was the beginning of this advocacy of just trying to make it better for other people.
Krystal with a K: Well, and you weren't limiting it just to men with breast cancer. You were thinking about
Jake: No, I was.
Krystal with a K: all people that might have to endure this.
Jake: And that's when I started shifting my messaging from men with breast cancer to really the metastatic breast cancer people. That's become my people since then, right? The male breast cancer community is too small. mean, it is too small, but more importantly, I've been in this for three years. I just went over my three year mark and that aforementioned, when you hit three years, like the three year day plus one is that's a mindfuck day. When you're living on borrowed time that first day, like that's a mindfuck day. That, yeah, right, right. when somebody, right.
Krystal with a K: With the clock, you're like, Are we done? What's going on up here? Am I gonna just slide down the fucking mountain? What's happening?
Jake: Right, where was that going?
Krystal with a K: Well you shifted your idea from male to metastatic.
Jake: Yes to metastatic. And the reason the yeah
Krystal with a K: Chemo brain, it's okay.
Jake: all the time the reason for that is because I am the leading spokesperson of metastatic male breast cancer in this country and I'm the leading male breast cancer person anywhere in the world. And I know three men with metastatic breast cancer three not three men I've met. Not three men that live in my town. I know three men in the world that have reached out to me or that are living their life publicly with metastatic breast cancer. Three, three other ones than me. So there's four of us in total. that is extremely isolating. so even the metastatic community, right? There's about 20,000 women that'll become metastatic every year. Which is that's a crazy number and of that there'll be about 200 men that go metastatic every year. So let's just do that math real quick in the three years that I've been in breast cancer 600 guys have gone metastatic not including all the ones that were already metastatic before them and.
Krystal with a K: And only four of you talk about it.
Jake: And there's four of us talking about
Krystal with a K: But that
Jake: the disease that is the most talked about disease in America like. That's the thing. Breast cancer is the most researched, the most talked about, the most funded, the most everything. All the other cancers are pissed at us. All the other cancers are like, know, yeah, I get it. Right. I get it.
Krystal with a K: yeah, they're they're hating hard. Cause we get a whole month. And I get it. Like I do get it. I do feel grateful. I again, there's mixed emotions. I am so grateful. But I'm also pissed as a breast cancer survivor because of the people that I know, because of the nonprofit, I have countless friends with stage four. I'm pissed that so much money and research is put in and we still don't have a fucking cure That's where I have a hard part.
Jake: but there's not, of all the money that is raised in breast cancer, Which is a lot of money per year, right? Whether you're talking about corporate sponsorships, whether you're talking about somebody writing a $5 check, everything, All the money that is given to breast cancer, between 2 and 5%, goes to metastatic breast cancer research. that's the only one that's gonna kill you Stage four is the only one that's gonna kill you two to 5 % goes to metastatic breast cancer research. So breast cancer is raising a ton of money. Is breast cancer giving that money to where it needs to go to end breast cancer? That's a much bigger question. And that's the question that
Krystal with a K: For sure.
Jake: you as a consumer need to be asking when you go out to TGI Fridays and support their breast cancer awareness month thing, how much money is going to breast cancer research? How much money is going to breast cancer at all? Just because an organization puts pink ribbons or has a pink drink on their thing doesn't mean that any of it is going to breast cancer. And chances are your waitress isn't going to know. I asked the waitress the other day, she's like, do you want our pink drink? And I was like, how much is going to metastatic breast cancer research? And she's like, and I'm like, I don't expect you to know that, right? But, but, right.
Krystal with a K: I'll let you off the hook. But no, it's you're accurate in that. And again, you've worked in nonprofit world too, right? and it depends on how big or small the nonprofit in my mine was very small. It was a local nonprofit. and I knew firsthand how much was going. And look, we were not putting it towards research. It was literally for mostly local. There are a couple of national programs for like financial assistance for them to pay their bills or for
Jake: Well, services. Of course, we certainly need that. Yeah.
Krystal with a K: sure. But the amount That you're saying, which is true, two to five percent are going to this. And then we're talking major corporations. So if you're a breast cancer muggle, let me explain this real quick. There's something called pink washing. Again, Jake and I are very hyper aware of it. And it unless you're in the breast cancer community, I don't even think you realize that it exists. So again, one in eight women.
Jake: Well, you probably do because you get really tired of all the pink washing happening every October. I mean, yeah, you just don't know what to call it. You're probably tired of it too.
Krystal with a K: All the pink shit. True. But but you also don't realize that what you're purchasing and where it goes to, and you don't know to ask the right questions. But that's why I truly love our community as much as social media comes with a lot of bullshit and trolls and fucked up things, because it does. And I deal with it all the time.
Jake: it does.
Krystal with a K: Especially as a woman who's outspoken. I do deal with that shit all of the time. And I'm sure as a male
Jake: Mm-hmm.
Krystal with a K: that's outspoken with breast cancer, you get some shit too. You get all the shit.
Jake: I
Krystal with a K: But that
Jake: right?
Krystal with a K: being said, in the last couple of years, it's been really cool to watch almost all of my breast cancer friends post about pink washing to educate everybody on it. And I'm hoping that that will change that two to five percent into much more. Stop buying shit from people because it's pink. that doesn't mean shit. ask them who they're giving it to, what the percentages are, and where's the money going? If it's going to a local nonprofit for financial assistance, or if it's going to research, or if it's just like, two percent's going to this, or if they don't know, don't fucking buy it. That's the biggest thing.
Jake: Right, right, if they don't know, if they don't know, that's the biggest red flag.
Krystal with a K: If they don't know, the answer's no, don't buy it. But
Jake: Right. Right.
Krystal with a K: s so sorry, I had to get on my soapbox about pink washing for a minute.
Jake: No, no, no, you're good. good. I've started navigating this and that's where my advocacy started, but I've also been trying to navigate where I land in this, There's about 20 % of the breast cancer world, the organized breast cancer world that do not want men involved in it. That do not want a male voice represented in it. I've been told straight to my face, men have too much. voice in this world, you're not taking mine away from me and I'm like, A, I agree with the first part of your sentence because men do have way too much voice in this world. But B, I'm not trying to fucking take yours away from you. I'm just trying to make people know that guys can get breast cancer. That's literally all I'm trying to do.
Krystal with a K: You just want representation for yourself as well.
Jake: And it's not equal. I, there's a lot of the male breast cancer guys that are looking for equality, not at all. It is 99 % to 1%. but we should have a voice. We should, we should be recognized that we're there. And more
Krystal with a K: Listen
Jake: importantly, every human being needs to know that they have breast tissue, right? Non-binary, transgender, male, female, doesn't fucking matter. if you're a human being. You've got breast tissue and that's what you need to know. So as I was going through this whole, trying to figure out who to work with, who not to work with, I start looking at different organizations when you say that things have been changing, things have been changing, especially in the male breast cancer realm. Because in the past two years, Susan G. Komen has put up a male breast cancer page on their page. The National Breast Cancer Foundation has been doing programming. This past year, Susan G. Komen approached me because they asked me to join their Metastatic Breast Cancer Steering Committee. I sit on a Susan G. Komen board and that's really important. Look, I get that lots of people have all kinds of issues with Komen. I have lots of issues with Komen, but I'm the first male patient they've ever asked to be on a board. they've had male doctors, they've had male fundraisers, but like that's
Krystal with a K: Well and maybe
Jake: a huge step, right? It's a huge step for all men with breast cancer to be included in this way because representation matters. I've been giving these platforms on Coleman and then I start working with organizations like Cancer Culture and MetaViver where I become ingrained in what they're doing. now what I do is I just spend my time supporting the organizations that A, want to work with me, B, spreading the word that men can get breast cancer and funny or entertaining or any kind of way that I can do it, right? And then, just trying to be that good human, We go back to the beginning of the story, Jake 2.0 after the stroke, I did all these things. For about a year, I was really wrestling with not that... I was reverting back, but Jake 2.0 didn't fit into cancer because I was angry and it just didn't fit into how I was trying to live. And it was really like last April, I had this epiphany is that I have to put Jake 2.0 through the lens of metastatic male breast cancer. And that's where you come up with Jake 3.0, which is I can be kind and be a good human and I can still tell you to fuck off. and all those things have a hard edge and that's where I'm at now, I be a good human, but I don't have to tolerate you being a shitty one. And so that's where Jake 3.0 came out of, Is this, it's to be a good human, the metastatic breast cancer hardened one of my edges. so that's the part that comes out on social sometimes and my rants But it also, I think helps people because It's not just the breast cancer people. It's not just the metastatic breast cancer people. get men, I get people with all kinds of rare diseases, not even cancer that are like, my gosh, you are talking for me. So I get a lot of people on my feed that are nothing to do with cancer that are like, thank you for talking in a way that I, if you took out male breast cancer and inserted my thing, that is exactly how I feel. And thank you for finally saying it. So, you know, I find.
Krystal with a K: think that's a human that's a human part, right? And again, if
Jake: I agree.
Krystal with a K: we take sex out of it, that's exactly why I started my podcast because I didn't want it to just be breast cancer. There are so many people with a human experience and they don't need to compare it to my shit because my shit is a trump
Jake: Hmm.
Krystal with a K: card. Cancer is a trump card. But people have all types of diseases, all types of fucked up things happen, trauma, abuse, everything. And so
Jake: Correct.
Krystal with a K: I think that when you're expressing yourself in an authentic way. That is what people connect with. And I get it. I honestly, I turned 40 and my give a fuck turned off. I I
Jake: Mmm.
Krystal with a K: truly, this last year, with the podcast, with being on social media, I don't have that many followers. Like you're killing it, as far as like that goes. But for me, I have for the first time ever been authentically myself as far as like what outwardly people see, people I don't know. And I stopped caring
Jake: Mm-hmm.
Krystal with a K: because I realized that the people that need it, that's more important than the people that might say some shit about it.
Jake: million percent.
Krystal with a K: And I'm grateful that I get to be that for some people because it also validates me and it helps fill my cup up and give this fucked up thing that happened to me purpose. So hate if you want to, but I'm I cannot tell you how many times, every day almost, I get a message from somebody either asking a question or saying thank you for me saying what they needed to hear. So
Jake: Mm-hmm.
Krystal with a K: I'm glad and I'm grateful that we have someone like you in the community. And obviously it sucks that like
Jake: Thank you.
Krystal with a K: Not every big wig, huh? What'd you say? It's yeah, it sucks that that's why we even met. I don't care what anybody says, sometimes you need a male voice. Like you guys know how to say shit at times when you really need it. And I but I also like I'm curious, I really want to know.
Jake: Sure
Krystal with a K: With you stepping into a mostly female community, I think it's different for men to do that into a women's community because
Jake: a million percent no, no.
Krystal with a K: Not not big wig, not big wig. I'm talking about other survivors. How supportive have they been of you?
Jake: almost everybody has been incredibly supportive. But I have to understand my role. When I go to breast cancer conferences, there's 150 women and me, When I just was doing my lobbying thing with Metafiber, there was 85 women and me, in the cancer community, right? We all have very strong opinions and we like to express them, Sometimes that can be interpreted as mansplaining and I never ever ever want to do that, So I have to walk around in the pink bubble really, really, really carefully I want to amplify women's voices, you see my social, I do it all the time. but I also need every day America to know that men can get breast cancer too. And at the end of the day, that's all I want you to know so that you at 52 years old, you're not putting on deodorant one day going, that's weird. And you wait four months. that's what I don't want to happen. So now every guy listening to this podcast, every guy listening to the alien podcast that I did yesterday, every, every guy that's listening anywhere. You now know that men can get breast cancer. So you can't use that excuse when you're 52 years old or whatever your age is, you just complimented my social media following. I, and I get sort of weirded out by that because here's the thing. It is not from my own hubris or not from my own ego. I have a video that went over a million views It's actually like a 1.1 million now. And the only thing I could care about. was that my username shows up there. And so a million people saw my video and then read the guy with stage four breast cancer and went, wait, I didn't know that was a thing
Krystal with a K: What?
Jake: or, right. And so, and then they moved on with their day, but 1.1 million people know that. And there has never been a male breast cancer advertising campaign in the history of mankind that has ever reached 1.1 million people. that's what I'm trying to do.
Krystal with a K: But you did it for yourself. You made it for yourself. And you made it for the other people that are. And I have two boys. so last week I had Marissa who was a BRCA. She's a I believe I can't remember w BRCA one or two. I'm I'm the worst chemo brain for real. but we talked about this. Men can pass that down, men can get breast cancer. It's really important for you
Jake: 100%.
Krystal with a K: to know that. Also, it's connected to other factors, other cancers. You need to know that as well. My children are going to be prepared. My children need to know that men can get breast cancer because I refuse after having it three times for them to not know preventative measures, for them to not be educated on their bodies. Like if you,
Jake: Yeah.
Krystal with a K: if nothing else. You prepare them and fucking God. I hope that by the time they're adults, there's way bigger. Yes,
Jake: this is a cure, right? It's all done
Krystal with a K: I can't live without worrying about that. That's not gonna be a thing. So
Jake: No, no.
Krystal with a K: you are a spokesperson that God forbid they grow up, they have this. I can say, look back at this guy. And by then, you're gonna be helping other people know it's okay to voice this. It's okay to be a man with breast cancer. There is a space for you. at the end of the day, you heard the words you have cancer. You're metastatic. You have a place here, just like pre-vivors have a place here. and I doesn't mean you don't have your own personal struggles with it. We all do. But like
Jake: I, sure, sure.
Krystal with a K: What are we gonna fucking do about it is the thing. And you're doing the thing.
Jake: We're all in this together. I appreciate that so much. I try and there's probably not a week that goes by. sit there and I go, what the fuck am I doing? Like, what am I doing?
Krystal with a K: Same.
Jake: What am I doing? And then I receive like those messages. mean, I'm at the point now where I can't answer every DM that comes in, because I get so many that come in now. I will. certainly glance and I read almost all of them, but really what I do is if there's a guy that reaches out to me and so far I'm like, I'm like, for 10, which is great that I want to, I want to keep this over because I've had like 10 guys reach out to me that are like, I found a lump. I'm really scared. And, and, and I say, first thing I say is, well, I'm not going to be the one to tell you have cancer or not to, you need to go to the doctor tomorrow. You need to make an appointment and go tomorrow. said, secondarily, you need to understand that I, and the anomaly that I'm the unicorn, that I'm the person that you don't need to be afraid of you have a 1 % chance it's a 99 % chance that it's not breast cancer. And that's what I want for you, brother. Like, I don't want you to have this. And so, so far I'm for 10. I've had 10 guys come to me and tell me, and then 10 guys have not had it. and it's eventually there's going to be a guy
Krystal with a K: But how cool
Jake: that does.
Krystal with a K: but how cool is it that you are that space that they as men, again, this is a thing society puts on you. You're not allowed to talk about being afraid. You're not allowed to talk about being scared. That is such a rare thing. So for you to be able to I can't wait.
Jake: You gotta watch my rant tomorrow, which is all about, this is all about men with breast cancer. It's all about finding
Krystal with a K: You
Jake: more than three guys with breast cancer. That's my rant tomorrow. I've already filmed it today.
Krystal with a K: Are you on like a on a search, like a where's Waldo for the male breast cancer? You should be you should be at this point.
Jake: I well, actually in this in this video I ask I ask the rest of the metastatic community to help me which is something I've never done before I'm like women in the metastatic community you need to help me find the men because they are suffering I get the benefit out of being loved and supported by this community and they are literally suffering in silence at home. I'll share one last story with you because There was a guy that wrote to me about two months ago and he said, I've been following you for a year. Never commented, never liked anything. Never certainly never shared anything. But a week ago you were talking about just being brave. one of the things I talk about a lot of my social is just be brave. And, he said, I had stage two breast cancer. 10 years ago and five people in my life knew that. My wife, my two kids and my parents. Everybody else just knew I had cancer or I was sick and I could never have brought myself to say the word breasts or breast tissue or breast cancer or whatever. But I've been watching you for a year. And you finally made me brave enough to change my Facebook profile to stage two breast cancer survivor. Cause I've never told anybody about it. And I told him, I was so proud of him. and he said, I feel like such an idiot because the amount of love and support that I received since I changed that and people reaching out and just wishing that I didn't suffer through that. I asked him if I could share this story because I wouldn't if he told me no, but when we talk about the 600 guys since I've been diagnosed 300 guys a year and I know three, that's what those other 597 guys are doing at home. They are suffering in silence because the world and society have told them that they have a woman's disease and they're not worthy of being men it's really, really, really difficult. I am as open and as liberal and all the things that you can be. And I have a hard time in it. I can't imagine somebody that isn't as open and isn't as communicative. I'm not blaming you. I'm telling you that I see you and I understand how hard it is. And so if you want to reach out to me, I don't care that you can't do this publicly. I just want you to know that you don't have to be alone. that's what you need to know. that you don't have to do this alone. And I don't ever have to utter your name on my social media. I don't ever have to say that I found another guy. But you don't need to be alone in this. That's literally my mission, is that men don't have to feel alone in this disease. there is community, there's lots of people out there that don't want you in their community, but there's a fuck ton of people that do. So find your community, do your part and... It's gonna make this really, really, really shitty thing just a little bit easier.
Krystal with a K: I agree completely. And I'm grateful that you get to be that person that they can reach out to. And that goes for me too. I'm not a man, I don't have a penis, but I don't care if you do or not. if you have been through something hard, you should never have to stand alone in it. And there are a lot of people that can be out there, especially if they fought the same monster as you, like cancer. Then they are your people. You will find them and don't suffer in silence. So, Jake, you're a fucking badass. I'm grateful that you came on and you made time. I know you've been busy as fuck. I thought you were so cool for doing 60 miles in three days. I was like, Jesus Christ, we we finally made it happen because you've been busy as fuck advocating. And dude, wild.
Jake: September and October have been nuts. I've been crazy. So yeah, but I appreciate making this happen. Yeah, thank you so much.
Krystal with a K: Yeah, and if Yeah, and we just want everybody to know at home that aliens actually cause cancer, so that's really the reason we're here. I'm just kidding. It's true. It's breaking news. That's right. He came along and then men, they insert it in the women. anyway That's how it goes. No, but
Jake: It's true. This is breaking news right now. I am actually an alien. I'm an alien and I cause cancer. Those are the things that I want you to know. Right. Right, right. That's great.
Krystal with a K: Plata is still alive. You're still alive. I'm grateful you're here. can you tell me how people can find you and those men? So I'll be helping do the call, the males with breast cancer. Can you give us your socials and where they can find you?
Jake: Sure. Thank you. Sure. You can't really type in male breast cancer online without finding me, but if you want to find me directly, I have a website, which is the easiest. It's www.theguywithstagefourbreastcancer, numerical four, it's a four number. It's the guywithstagefourbreastcancer.com. And then from there, I'm on TikTok as the guywithstagefourbreastcancer. I'm on Instagram as the guywithstagefourbreastcancer. and I'm on Facebook as Jake Messier because that used to be my personal place, but then so many people were following me that I was like, fuck it, and I just opened it up I'm not hard to find.
Krystal with a K: And I will also create a blog. I love giving people resources. So I will create a blog with all the info that you already sent me because you're a badass. And and that's at PlotTwist StillAlive.com. And you can find me on Instagram and TikTok being really cringy at 40 years old, and I don't give a fuck. And not having nipples, but now having nipples. on Instagram as well. that's really all I have to say. So we have to end this shit the right way though. So we always do a high five. So you're gonna high five the camera. Go ahead.
Jake: Yep. Yep. Yep.
Krystal with a K: All right, still alive and now you have
Jake: Got it.
Krystal with a K: to do your evil laugh. Evil laugh, go. You have to do one. It's required.
Jake: to do one? All right. All right. Hold on. I gotta get into character. I was unprepared for this. I was unprepared for
Krystal with a K: Warm it up. I didn't tell you. I didn't tell you.
Jake: All right, hold on. Mwah ha ha ha ha! Was that? Yours was way more evil. Actually, you reminded me from the guy in the Hunger Games, played by Stanley Tucci when he's on the stage, and he's like ha ha ha ha, he does the whole, he looks, he's the news guy, and he looks, he's really great. Right? That's great. So.
Krystal with a K: Which one? I love Stanley Tucci. Yes. Yes. I'll take it, baby. I'll take it. I love Stanley. Stanley, I love you. Okay, well, thank you so much for being here.
Jake: Thank you so much, friend. It was great.
Krystal with a K: And I'll talk to you later.
