Cancer, Comfort, and Community: Joe Bullock’s Contributions to Male Cancer Support

So excited to be talking to you today. First off, welcome to Gut Check stories of open inspiration, the power of perseverance. Today, I'm super, super excited to have Joe Bullock, who is the Chief Operating Officer for mana to cancer. And they are just this tremendous organization. They're designed to be a support group, for men who are sick, who are fighting cancer. And one of the reasons I've got Joe and we're here to talk about the mannose cancer team today is that when I was going through treatment 12 years ago, that we are pretty limited in our networking and support for people who are like us, or like me, going through cancer, I had a trim a really nice little local support group had by Anita Mitchell and the colon stars. But when I was saying, I really needed more people to talk to and more, more folks like me who I could, who understood the situation and the challenges I was in, that just wasn't there. But that's where now is I've gotten involved in supporting the supporting cancer awareness and doing different things. Because I've been networking around I've learned about Man Up To Cancer, and the great work that's going on. First off, Trevor Maxwell, he's the founder, he he's been directly involved and done some great things. And he Groton has brought in this wonderful team of volunteers that are out there, including Joe and Joe, welcome to the podcast.

Thank you, Paul. Thanks for having me join you. I totally 100% Agree, even when I got diagnosed with colon cancer, stage three, almost about six years ago, I went to a very similar small support thing like you did to GI cancer support group. But there were very few men my age in support group, I think I was maybe one to one or two or three men that were even there. And they were even much older than me. Because colorectal cancer, the average age is 68. Although we know, you know that the screening that died at diagnosis is much younger. We've we've we've done that over the last few years. So the only reason why I got connected more social in social media is because a friend of mine, who was at the support group had said, she basically said I need to help you find your people. And she directed me to because I was really leery about social media. And she kind of directed me to call them down and buy a colorectal cancer and a couple of groups that would obviously help support my journey. So that's kind of how I got involved with that social media side of things, when it comes to colon cancer and finding those, finding those groups to help learn about my diagnosis and find that peer to peer education that is so important when you're going through treatment as well.

So you we started talking about the support we needed and your cancer was similar to mine that can you tell us a little bit about before you even learn you had cancer? What kind of were the symptoms or how did you find out and and what was that challenge? Because we know whether it's men or regardless that colon cancer is kind of silent and it kind of catches up on us right so but you may have had symptoms well ahead of time. How did you find out?

Um, well to be honest, I had symptoms probably a couple of years for I was diagnosed and I probably started showing signs around 48 And I remember going into my my physicals, my doctor and I kept telling him about all these CCI symptoms I was having I was having like, like stomach flus pretty often I started having some abdominal cramping, but nothing that wasn't able to control with an over the counter drug. I started having some slight blood in my stool but not enough to merit I guess for him to question it. And it wasn't till I went to my appointment right for my it was it was two months before my 50th birthday. So back in 2018 the age of screening was 50. We know today that the age of screening for colorectal cancer was 45. But in 2018, that was okay, so he was like, well, it'll be 52 months. Even though I still had all these symptoms, he was like we're gonna have to wait until your birthday in October and are no kidding me. You need to schedule your colonoscopy. So happy birthday to me. I got to schedule a colonoscopy which initially saved my life but now it was really odd that I still had to wait two months for my insurance to approve a whole ASPI that that would have caught my thought my cancer earlier, you know, and obviously today if I could have gotten screened at 45, because we know that cancer can live in your body for seven to 10 years for you even diagnosed before we even have symptoms. So, you know, if I had, if I was afforded the opportunity to 45 in my neighborhood and found diagnosed at stage three and stage one, and which would have prevented me from going through those years of, of, of going through treatment and follow ups and things like that. So it was, it was definitely something that I knew something was going on. Because when he brought up things like hemorrhoids, I was a pre K teacher. So I was very active. So he was telling me like, Well, you probably need to be more active. And I thought, dude, I'm a preschool teacher. I'm pretty active, like, we will be causing this. And so eventually, I got the colonoscopy, I still put it off, like I had some personal things happen. And I was just a guy, the life was just happening to my wife and I, like our kids were teenagers, they were in high school with everyone the band, and they were doing all these activities. And as a dad, I was just like, I don't want to deal with this right now. I want to get my family on take care of my kids. And as symptoms will kind of go back and forth. Right? And it wasn't until probably March or April of 2018 that there was this the blood in the water, and I knew something was really wrong. And my wife who is a nurse and an RN, oh, well, okay, it's your fault. Did you choose to be at risk? I put it off. Why after you schedule your colonoscopy, so she was very much like, basically, Hey, stupid, go get a colonoscopy, sir. So at her urging, I did go get that colonoscopy in May of 2018. And I walked out a cancer patient, we do. Basically, I basically did the colonoscopy I did what I did through, it was like a local, so I was pretty much awake during the colonoscopy. Well, I had prepping all night for it. And so when I got them laid down, I'll just do the procedure. I even told the doctor, I'm probably going to fall asleep. But you know, we'll see. And I did I think I fell asleep and woke up about 10 minutes into it. And I remember looking up and I saw the screen, and I had Googled enough to know what a tumor look like, oh, wow, that's great. And I don't think he realized I was awake. And I remember kind of pointing to the great screen going. That's cancer. That's a tumor. And I could see it, it was like a meatball sized tumor hanging off the side embedded in the side of my colon. And I was starting to hyperventilate. So he was like you're you gotta calm down, he was like I got through the rest of the code. When we got to the other side. We we've marked it, we've tagged it, we biopsy that we pretty much knew how it was embedded in the wall, there was probably less lymph node involvement. So he was kind of explaining all this to me, but we're gonna have to clean up and get back to your why we didn't explain all that to me, then he was like, we're just gonna get you cleaned up. Right? Yeah. You're not really talking to say that during the time of the procedure, right? No, I was taught. But but he got me cleaned up. He reassured me that we got he basically said, you know, we got you in a minute. And then when we got back to his office, he told me, Doctor told me, This is what's going to happen. I've already talked to your oncologist, I've already getting a surgeon set up, things move pretty quick for me in that incident, but the realization hit me that what we were walking into was going to totally shut down my family for five years. And it really, it really did. Anything we did going forwards on my cancer and my Suboxone, which was hard if it didn't have a lot of guilt on me, I did a lot of good on him in

that moment is pretty overwhelming, isn't it? And whether you are half awake during a procedure or right afterward, were when I woke up and he came in to talk and he said, we found a tumor. He never said you have cancer. He said you have a tumor. And we need to start and unfortunately, my tumor was big enough that they couldn't determine the rest of my colons and look at it. So but yeah, what a scary moment. It's fascinating and whether you're thinking, Okay, the next five years of my life are going to be dramatically different or, oh my gosh, am I going to die tomorrow, just trying to get that assessment is pretty overwhelming. So you mentioned that your experience going through treatment or not through treatment, but through the colonoscopy a little different than most people lots and lots of folks are getting a colonoscopy in prep that almost everybody talks about that it's the best nap of their life. And and how wonder and how wonderful that was.

Because I have I have a CPAP machine now. So I've had three colonoscopy since then. And so now I have to go I have people there because CPAP So yeah, so it now it's the best nap I can take. Exactly, exactly right.

Right. Well, I think and then your treatment, you said your treat your training was similar to mine that? Well, first, just for a pause back of one of the things you had said, as you're going through that you postpone your colonoscopy a couple times. And, you know, ironically, and ironically, this week, I was in with my physician, and here I am a tenure survivor, and and then the advocate. And my physician said, Have you scheduled your colonoscopy? And I was like, wait, what? Because I'd gotten so used to my own routine that I had lost the timeline a little bit of when it's time to get my colonoscopy. So it's that natural, we either delay it or it doesn't seem to buy a high priority on your treatment. It sounds like it was similar to mine that you had radiation and surgery and rate and then more chemotherapy. Could you talk about how you went through treatments or what that was, that experience was like, mine

was a little different that I didn't do radiation, I actually, they were able to remove her Ruby connection. And then because they found they removed 40 lymph nodes along that path. And three of those lymph nodes were found to be cancerous. So either they end up reconnecting my colon. And then I did six months of what's called a regimen of chemotherapy called K Fox, which is awesome platen infusion along with a two weeks of a three hour infusion of Oxy platen and then a two weeks of Zendala pills. And then we can go off, and then I would do that rotation for a time. So I did that it was over a series of six months. This was what I did. After that After that was done about a month later, I scanned and I found out I was no evidence of disease. And that was in February of 2019.

And, and since then you have been continuing to go in and you're still cancer free, and then didn't now doing great things right

apologist for the last time I saw my oncologist for the last time in January of this year. That was our final meeting. Everything I was cancer free, he was like, go off live your life. And I'm like, what does that mean? Yeah, this has been my lawn for the last six years. You know, and he's like, he was like, No, you're you're, well, he basically you're you are a well informed patient, I have no doubt that you're gonna keep track of your health at this point. As it comes to your answer, because he would he'd always every time I would come see him every follow up, he would set aside like a 10 minute window for me to ask questions. Because being as as well entrenched as I am in the community over the last five years, I've always had questions for him, like, you know, the newest, you know, biomarker, this is the newest test, this is the newest this, that's he would take time to talk to me about it. And then we figure out if I needed that or needed this. And how's this me going forward. So he always appreciated that he always had to set aside a few minutes from the assets, which I really appreciate it and it's a good sign that you have a good oncologist when I set that apart for you.

Well, having those conversations with doctors are so critical, right? I mean, I had a wonderful relationship with my although, and she now you're actually now Facebook friends on Facebook friends with all my physicians from back then. But to this day, she still pronounces my last name wrong. She knows me. She appreciates me. But she still says hello, Mr. Regal. And I'm like, it's called Gabby. So anyway, so one of the things you mentioned was of how you've been involved with Mana Mana to cancer in different groups. And you've been asking lots of questions. Trevor, Next of all started up in that manner to cancer. Did you say a little bit about the group? What got you involved and then all the different things you're involved with now?

Well, I like I mentioned to you earlier. So when I spent this, you know, I became in at in February 2019. Being Ned, as we call it is like a gift you really don't know how to wrap. So I wanted this crazy phase, and more or less like cancer, actually missing the treatment. I know that's crazy to say that you would miss going to chemo every day. But I actually missed it for a while. It's just almost like this grief about it so that I ended up back in therapy for a while. The Chad process all that Yeah. But then I had this desire to help men because I had been like Facebook friending men who are going to cancer out and go on because most of these Facebook groups, they're like 20 AD AD women and 20% men and I appreciate at all the feedback I got from one, but at the moment, I was really wanting to know how a man was handling go to cancer. And so I'll go on these different Facebook groups, and I would a guy would comment on my post. So I would send them a friend request. And then I would send them a private message saying, Hey, do you have a few minutes to chat? I just wanted to talk about what you're going through as a father as a husband, how are you handling telling your kids about your cancer, and I started building over probably a year period. And then Trevor, and I've met through an organization called colon town, which is called down.org. Um, there's actually a men's group for men facing colorectal cancer within that organization. And he and I, he he didn't, he wasn't active person host in there. He just happened to post a couple times. And we once again, just kind of misses back and forth. And yeah, all of a sudden started telling me what he was building with Manaphy cancer, and what I want to be involved, and I had several people kind of come to me about something similar. And I would ponder it, and they would come to me, but with Trevor, he was so true, actually does plan to help men emotionally to emotionally support men go after cancer, that it was like an automatic, yes, it was something I had to think about. I really saw what he wanted to do, and he was determined to do. And so he invited me to join his Facebook group. And he was forming was just called behind closed group to join many of them in he invited and many of them and that I had invited. And probably about a month into it. He asked if I would come on board as the lead administrator, and help him run the group. And I did that for three and a half years with Trevor. You know, during that process Trevor developed. As far as ation, we developed our chemo chemo care backpack program. We started the gathering the wolves retreat that we have every year, we started forming these small chatter groups throughout the world, literally. And late last year, we started our Bali emerged as a nonprofit that last year to support any programs that were doing. So and that's where we are today. But it all started with Trevor just asking me one question. And that's Do you want to do this? And I was like, Yes, I want to do this. So that's where it began. And we've now grown we've have over almost 27, right at 2700 men in the Facebook group. We're expecting about 200 men to come to our retreat this year. No kidding. Yeah, we've, I think, since March 2022, sent out probably close to 300 backpacks to men in our group going through cancer. The guys come in the Facebook group, and they request a bag if they're a member of Facebook group. So we probably sent out around 300 of those on since we started with a goal of probably sending around 400 industry. Through a lot of that we're able to do this through some grassroots fundraising and through corporate sponsorships. So we've gotten for all of it, what we've been able to do. So that's all sense where we're at. And, yeah, so we have a whole great mountain, we have a whole great leadership team now. And obviously, our board being nonprofits, so we're able to get a lot done.

You are and I know that was one of the notes that we had traded back and forth that so and I was we were both at a B cologuard. Classic down in Tucson, it's now a little more than a month ago, and I didn't get a chance to meet you at the time. But I remember walking by, and Don was going down to the minute to cancer group photo. And there were, I think 40 or 50 of you there maybe even more, or at least a look like that. And you can see those love.

Yes, it was like that was our first we've been a part of that event, probably since the beginning the last four years. But we've never been there as a partner or organization. So I even mentioned that two years ago in person. And I remember being there walking around and the guys that I knew have their manifest counselor hats on and they're managed to answer T shirts. And I thought we really need to be here as a partner. And so when I left that golf tournament that year, I thought I'm not coming back. I'm gonna have to cancer as a partner. And I was so excited when our friends at exact sciences asked us to come on board. So that was really, for me, it really shows how far we've come as an organization and we highlighted the way they highlighted on Saturday.

But no kidding. Well, you mentioned the backpacks and I that was one of the things I was really not inspired by but I mean The thought and what is going into that that for somebody? And especially we've talked about, yes, as cancer patients, we're all have similar experiences. But men, we do have different things. What is all in that backpack that gets delivered to the men who request one?

Well, it started. Well, actually, I know when I read that I'd gotten home, it's probably my fifth round of chemo. And I was having no worst day, it was just awful. And I remember coming home and my wife said, there's a box for you on the dining table a tear up thinking about it. But it was sorry, it was just a care package had just a few items that someone thought I would need. Yeah. So that kind of inspired me. To to create to help work with Trevor tried mentioned, you know, this was a program I think we should start. And so we decided to start if we really wanted to be I had, we had researched for about probably about six months into all these different cancer care packs or chemo packs that you need get. And yeah. And one thing that we found is that none of them, it really didn't have anything to hold it. Yeah, firstly, Trevor was like, I really want guys to have like a backpack, I want them feel like they're going somewhere that they're, yeah, I'll be entering that cancer center, and there's gonna be cancer. That was the goal of cheer up thinking about this. But um, so we, we decided that was definitely wanted to do is going to be a backpack. And then we also just looked at some basic things like hand lotion, water bottle, some hydration tabs. Chapstick, we include gloves, because I know when I went through chemo, I kept a pair of gloves on the refrigerator, because one of the side effects we occupied was the pins and needles and the syndrome. So I had a pair of gloves. So we put a pair of gloves, and we have some warm socks in there. You know, we provide a blanket in there. Some cancer centers offer some don't some guys some cancer centers, you go to like a row of infusions here, so you don't know whether you're gonna get so we provide a blanket if the gods want to use it. We also have a, we have a challenge coin, which has become a favorite item, which is a I know you talked about the military, if you guys who are vast and military background, they know about the challenge coins. So whenever you see each other, you share your coin. So a lot of the guys will go to there, will actually meet up getting treatments. And they'll show a coin said that that's kind of like a brotherhood thing. So that's something we also lose. And we also have a resource packet that includes a lot of resources. There's an organization called recovery that provides retreats for men going through cancer, and that we have a pamphlet that resource pack has looked at and a few other things from different organizations. Some of the colorectal organizations like bipolar cancer and Nicole Colon Cancer Coalition and who provide sock who provide the socks and the gloves or the backpacks. They're also highlighted in the resource pack. So that's another thing so those were the items that are with pack but it's really the day to program that means a lot to me see, whenever they I personally receiving their bags, it's always in motion for me to see it because you know it's it's it's really shitty what they're going through. Right. But at least yeah, there's some small thing that brings them comfort. And that's that's really what we're trying to provide and it it really is all about what we're about is offering the emotional support and helping guys get through this traumatic experience that we know it's cancer.

That's I'm thinking about my time and it's interesting you talked about wanting a backpack to be going in and out and having something that I think about when I was going through treatment and and having a backpack to carry they when they gave me my infusion pack that I was supposed to carry around for three days. It was this god awful cranberry color and fanny pack and I refuse to wear it. i There was no way I was going to have that. So I took my Camelback backpack and took out the Camelback part and the and the chemo machine slid right into that like put it on tight and because I was a hiker and athlete and doing things that most people have worked didn't even know that I was going through treatment because they just thought I was being overzealous and training for example. So but but so cool to me, your your point of to show to get to get something and to feel The love and appreciation and and the other people know what you're going through is overwhelming. So that that's amazing for what you've done. Thank you and and how things continue to evolve. You met. You mentioned the retreat that's coming up. I think it's in. Is it September? I think it's in September, over 200 people I know that I recently saw the invite. I had no idea of how big it's gonna be. Could you just say a little bit about what that experience is like? Because, dang Joe, I never would say I want to have cancer again. But boy, I mean, it's one of those things where I think about how emit I knew already the amazing things you will have been doing. But I'm just blown away and hearing the detail of the stories. This is incredible.

Yeah, it's an amazing retreat, it really is a chance for the guys to just get to know each other to talk to another guy who's going to retreat in or, or has been through treatment, talking about their journeys. And they do stuff like well, we'll we'll play cornhole, we'll drink beer by the fire, we'll have meals together. You know, we'll do a special remembrance ceremony because unfortunately, like, between the first retreat, and the second retreat, we lost about 100 men to cancer. Wow. Yeah, were they were they remembered at a remembrance ceremony. You know, and then the guys will also have a, an evening event where they'll talk about things they want to release like that their fear and, you know, things that they've had to let go up, like some guys have had to let go of their career, some guys have had to, you know, deal with broken relationships, or they've had to deal with hurt feelings will have sort of a talk around the fire. And for some of those guys, it's the first time really bringing those things up, right. All right. So we'll have those times together. And it's been a fun this year, the last couple of years. We've done a lot our but this year, we're working with a campground and the puck is the Poconos springs camp, in the Poconos, area, Pennsylvania, and this year is going to be much more amenities, they have a pickleball court, they have a heated pool. They have zipline core, so there's so many, much more amenities wise than you've ever had. So there'll be times where the guys just to do and enjoy. And that's really the goal of their treatments, the place for them to go meet someone go through cancer like themselves and build a relationship. And there's so many stories, I can tell you that but I'll start crying probably through all of it. You know, some of the guys I have met really for or unfortunately for the last time. Yeah, you know, but I'm, I'm very glad to have been given the opportunity to do that, you know, to have spent that time with that. And that happens at this retreat, as well. So it's, it's a, just a wonderful opportunity to be a part of entertaining, and I'm very fortunate to be able to.

Well, I think you're you're subtle in where you're saying that you're lucky to be a part of it, because I know that you have continued to grow in your role. And you started as a volunteer and, and you got involved with the howling planks, and then the backpack, and now you've got the retreats. And it's not just that you're a part of it. But you and the team continue to build and lead this wonderful vision of how to take out to help support and take care of others. I just think it's beyond inspirational. So thank you for that. So one thing I did everyone

I represent a lot of what the group is about because Trevor, he is currently battling stage four metastatic colon cancer. You know, he just had his I think eighth, eighth treatment, a surgery or procedure. And has, during this last five years created all this with the support of the team. But myself being someone who's been dead, no evidence of disease now for almost six years, but continue to work in the community. And I think we will collect a lot of what it's going to take the kind of support to make this happen. A lot of our volunteers are cancer patients who are facing treatments every day but still are taking the opportunity to reach out a hand and help another brother but there's also a sign up But there's also guys like me who who are cancer free, but continue to want to work in the community. And that takes a lot as well to have to face these losses. But it takes someone who is willing to go beyond that, and continue to reach that handout and get in give support. And I'm going on, honestly, and I told you earlier, my plan originally was to just walk away, you know, go back to being a father, whatever I was doing back then, I never in my mind, thought I would be where I am today. I'm grateful to be where I am. I'm grateful that I can offer the support. But it took it took a lot to get here. It took a lot to get here. And it's not for everyone. And but if you have that in you, and you walk through that it's very rewarding. And so I encourage those that are you know, it's definitely in the lower stages, it's a great opportunity to really put yourself out there. And you read so many more benefits from it than you'd ever NEFT? Well, wouldn't you,

or view and Trevor and manage cancer are doing is is really amazing. And I know we can spend hours talking about this, I can. I've got pages, pages and pages of notes, I was going to add you one thing you've had mentioned in some of that, and we'll talk about another time. One of your favorite movies is the Rocky Horror Picture Show and that kind of some of this, this sucks. Some of this experience is almost like the Rocky Horror Picture Show, right that you don't quite know what avenues are going to be opening up and what the world is going to look like. Any plans of having that as a screening at the retreat.

We should that actually is a really good idea. It was like I think when I wrote that I compared it to also to Monty Python's Holy Grail. Yes. Which is a totally confusing movie for me. So both sides of that, like cancer is unexpected. And so refusing all the time. It's a that was my reflection, because those are two these I would go to as a kid and on a Saturday night, there's a place on your capital North Carolina that was show them for $1 each. And so me and my friends would go and we'd sit through both movies. Just stupid teenagers. Yeah, that's all we did. And but I remember thinking back, I love the first one. And the second one I didn't get I just laughed a lot with my friends, right? That's a lot of the feeling you get with cancer. You know, it's all right and confusing, and you look to support with your friends and you help your friends. But sometimes you don't understand him yet. Definitely a reflection on that on that. One a

great metaphor. The final thing I want to ask about besides where we can go for additional information is I know I've seen through a bunch of the different discussions of your obsession with peaks. And that or at least people have said that that mean that Easter is your favorite holiday, in part because of peace. Can you just tell us a little bit about about that dragger.

So some of it is I grew up, we weren't, we were pretty poor. And one of the things always got at Easter was a pizza, they were cheap. My mom always made sure we had on our baskets. So I just have a really good I can't go into a lot of it. I had a really rough childhood. But that was one of the highlights of my childhood. And so I've gone through struggles even as you know, I was home, I was actually homeless to live while there's a lot happened in my life. But in all of those struggles, that has always been sort of a positive thing for me, it brought me a lot of joy, a lot of happiness. Even even a joking leading a freak a teacher when I was going through treatment. I remember my kids did a peep stay because they thought they wanted to. You know I remember getting peeps and because they knew that stuff, and they called me Mr. Joe made Mr. Joe happy. So you know, what I was I was going to chemo so I have a lot of it's not the end itself, but it's the what the feeling that brings me the emotional support that has brought me throughout over the years. So exactly. And it also you know, today is May 1 in our Facebook group. And what we do on the first day of each month, we have what's called anything but Cancer Day, you call it the ABC day where we encourage the guys to talk about things other than their cancer, like their motorcycles and their their sports tournaments or going to or what their kids are doing, you know, we try to pick a day just not to talk about cancer. And that kind of goes along with the pizza. This is something that I could think about. That's not the answer. Right? Exactly.

But uh what In a great metaphor and a great story, well, I know what I'm going to be. When the ice then getting on sale next January, I'm just gonna start stocking up with everybody else so that you've got like this warehouse. So you've got them all the time. But what a great metaphor to write. I mean, if there are peaks and their peaks looking out and job, like I said, we could spend forever. Um, where can people go? You had mentioned the Facebook group, where can people go to find out more information about Manos cancer?

Then you got a man at the cancer.org. They can also reach out to me, Joe at manifest cancer.org Is my is my email address. Perfect, as well as

awesome. And then there's a Facebook page that they can go and check out as well. And

yes, they can get full access to the Facebook Facebook page. Learn more about our programs all at manatee cancer Toffolo.

Beautiful. Well, I know I'm already three minutes to cancer. I did not realize that ABC anything but cancer was today. So I will certainly be sharing a story or two myself. So Joe. Yes, thank you. This time has been great. And I know we had to schedule around a little bit as you're both dealing with some. Ironically stomach issues ourselves. Right, but I trust that you're Yeah, yes. Cool. Well, well Joe with mana to cancer. Thank you so much for your time today. As he said, If you have questions if you have thoughts, manuptocancer.org and get those resources. So thank you