Cancer is the Worst Birthday Present
- helsbels7
- Mar 7, 2022
- 1 min read
What's the worst birthday present you've ever had? For New Yorker Jonny Puglia a shock diagnosis of stage 4 colon cancer was not the gift he was expecting on his 30th birthday.
Fortunately, Jonny decided not to dwell on it and decided to face it with his humor.
After beating cancer not once but twice, he has now used his experience to help adults who are also affected by cancer with his blog Thrivr.
In this episode, we talked about:
- Living through cancer symptoms without the benefit of insurance
- Why mental health is just as important as chemotherapy
- How to properly use other people's experiences to help yours
- The importance of having someone come with you to doctor's appointments
- Why you shouldn't shy away from asking your doctor everything you need to know
Jonny's links: Website
Helen's links:
The C Word Radio is a podcast that asks WTF does young cancer survivorship mean. If you got cancer and all you got was a darker sense of humor and PTSD join host, Helen King, and regular guests, for raw and at times inappropriate conversations about life after a cancer diagnosis.
Listen here:
Show Transcript
[00:00:00] Helen: You're listening to the C-word radio, the podcast where we ask what the fuck does young cancer survivorship mean with me, Helen King, and guests, subscribe and rate on apple podcasts and Spotify.
Hello, my friend welcome back to another episode of your favourite podcast sharing our cancer stories. It feels like a long time since I sat at my dining room table and recorded, so much has been going on this past month! Even in the past week - I don't know about anyone else but this latest omicron surge and the ridiculousness in the capital got me into very detached mind space. I have spent a good amount of time this week off social media and binging the TV series Friday Night Lights. It's about all I've been able to cope with.
Last month on the podcast we put a spotlight on ovarian cancer for awareness month, if you haven't already you can catch up on those episodes
This month my guests will share their experiences of living with cancer. In the survivorship world, we tend to focus on one type of survivorship and don't often create space for dialogue around what happens if your cancer returns. So make sure you're subscribed to the show on your favourite platform so you don't miss what we've got coming up this month.
My guest today is Jonny Puglia, a Long Island Native and cancer thriver. I loved this conversation - the actual interview didn't start until 7min into the recording because we were bantering so much.
Jonny had possibly the worst birthday present when he was diagnosed with stage 4 colon cancer - looking back he thinks the symptoms started two years prior, his story is so important to educate others about symptoms to get checked. But also the inequality created by health systems created around health insurance.
This is Jonny's story
Helen - Jonny, It is so cool to meet you and have you on the podcast. I have been starting my interviews recently with a very broad and probably loaded question, but why not stop?
Is that I really came to ask different people. What does survivorship mean to you?
Jonny: It's funny because when I got your invite, the survivorship topic came up. The name survivorship is just interesting to me. It's not a trigger word per se because I've, hadn't met people who thinks that it's a trigger word for me, you know, having stage four cancer.
I often have two different subgroups. I talked to those who know cancer and those that don't. I call them the cancer muggles, which is the word out there? It's oh my goodness. It's one of my favorite words to use, but you know, for those inexperienced [00:01:00] people with cancer, they might have a relative, but they don't really know directly how it feels.
[00:01:03] Right. And so when I'm talking, I say to those cancer moguls, you know, my friends who don't really understand how, what I'm doing. I'm a two time stage four survivor, however, to the cancer community people know stage for cannabis metastatic. So it's life long, right? Meaning that we're plagued with reoccurrences and maybe we won't, but we don't know that.
[00:01:23] And we have the modern constantly and getting those contrasts dies, drinking those beverages that make you glow, which are always so tasty. And so for me though, I mean, I think of the worst surviving, I think of thriving and that's something that I've kind of embraced because to me. I look at other people that don't have cancer and they thrive, right.
[00:01:41] Because they're not dealing with something chronic, like we do, or even acute, but can still be chronic as cancer is always with you, no matter what. Right. Yeah. And so I think that when we're talking about that cancer itself, thriving, we don't get that opportunity. Or we don't think we do inherently. We have to go above and beyond those that don't have cancer to be thriving.
[00:01:59] And so for [00:02:00] me, survivorship is just being able to live a life that I want to by design. And it's so hard to overcome that step, especially after treatment, right? Because like I said, we were talking earlier, you get a pamphlet or you get a pat on the back or a bell, you ring a bell. I never got to do that.
[00:02:18] And I think it's hysterical. I mean, it's great for morale, but also it has a tendency to be a negative aspect. So in long story short, I think survivorship for me is just being able to thrive and to live my life by. And how I choose to, because we're always struggling to find what is that purpose in the world, because we always feel burdened because we're always at a doctor's visit or always getting a lot, like, you know, someone's always taking care of us financially or otherwise.
[00:02:42] Helen: It totally does. And I really agree because I have really grappled with the word survivorship. Cause I, I don't love it, but I, I guess it's sometimes the only word I can use when I'm trying to explain to people part of my world or, you know, what life has been like. And it's really interesting because you and [00:03:00] I look like we were diagnosed around the same time because I think I had my mastectomy.
[00:03:07] July of 2018. So it sounds like we've been on the same. Yeah. Like this parallel path and the cancer cosmos, he was diagnosed on your birthday, which I think is seriously in the scheme of things that can go wrong on your birthday. That one is up
[00:03:28] Jonny: there. I was like, why not throw that in there? It was funny because.
[00:03:32] I use dark humor. I've used that to kind of, so just tell my story because I hate when people look sad. I like shrimp people have like on the people who help people. Like, I love volunteering, eating, but I receive help. I often rejected and I feel I don't want to be burdensome, even though that's probably the mindset of someone else who I've helped earlier.
[00:03:50] Right. And when they could, and I think honestly, Instantly, it goes into emphasis on getting distracted, right. When you're praying. But when was my birthday, that's when [00:04:00] everything happened and it came in so fast and I was expecting, oh, you know, maybe homely cancer, not metastatic. Right. And the doctor was terrible.
[00:04:09] I mean, you probably experienced bad. I mean, doctors tend to have very interesting bedside manners. Right. And so a lot of them are used to saying these. I'm not. So when they say it's very cold, dark, and they just throw it out there, like, okay, goodbye, or, okay, come back. We're going to rip out your colon.
[00:04:26] You know, we're just going to sit there and cut through things and whatever, and you might have this, you might have permanent disability as a complication and all too, you know, it's like, oh, happy birthday to me. He didn't have a birthday for me. He just said, Hey, you have at most five years to live. And I'm like, you know, So, yeah, like it's interesting, like having a birthday tied to your cancerversary.
[00:04:48] Right. Which I kind of call thrive a versary. Cause I'm just, again, I'm using, I don't, I'm like assessing cancer with myself. I like saying, oh, I have cancer. I had cancer. Here's how I can help. I don't want to be associated with the C-word. Right. The [00:05:00] cancer as myself, my own identity. I'm Jonny. I'm XYZ. I'm not cancer's or could be, but it's not me.
[00:05:08] Helen: Yeah, absolutely. So how old were you turning? What birthday was.
[00:05:14] Jonny: Oh, dirty 30.
[00:05:19] When you're coming out of college, you're finding yourself. And of course, student loan debt hits you in the states. Right. But also you're like, oh my I'm adulting. Finally, I'm kind of, you know, I'm living on my own, I'm doing my thing. And it's like, Roadblock you have cancer.
[00:05:37] That was my present, basically. And it was like, when you got diagnosed almost like Hollywood portrayals of how this happens, right? It's like, everything is like shunned out and you kind of like zone out. And I kind of zoned out as it were saying, like, I got hurt him, but it really, really hear him. I just kind of was like thinking in my head, well, what are my next steps? What's going on?
[00:05:54] Is this really happening? This is a dream of pinching myself. It was real life. Fight or flight, [00:06:00] and there's a middle ground that happens too, where you're there, but you're not,
[00:06:05] Helen: it's so surreal and I've talked to other people and I think it's that weird thing. You get this diagnosis. And then you're flung into this world where all of a sudden you're getting tests and scans and appointments.
[00:06:17] And if you hit this moment where you look around at other people going about their daily lives, like dropping the kids off at school, going to work, going to the gym or whatever, and you add dealing with a life-threatening illness. And it's so weird to reconcile that you're still in the world. If that makes sense.
[00:06:34] It's like, what.
[00:06:37] Jonny: Yeah. I mean, yeah, you're another dimension that like, we see other people, but we're like not seeing, you know, we have another dimension where there's three dimensions or four dimensions, whatever the science hasn't now, but we're at another little dimension where we can see things, but they really can't see us, which really are right.
[00:06:51] And so I was thinking about this, you know, throughout, oh my goodness. Last year. I'm from New York. I'm from LA originally. And of course it's supported by long island [00:07:00] people in the state, especially no long Islanders. We tend to be. Extra, you know, like a New York accent, we like to dry fast. So often I dry, fast down there and I noticed too, at a point where I'm like, someone cut me off.
[00:07:12] I didn't curse them out. I didn't swear. I didn't wish them bad luck. I'm like, what happens? They're late to chemo. Right? And I'm like, oh my God. That is such a takeaway for how grateful I am living in this present. Right. But also acknowledging that person who just cut me off from maybe flip me off because we do things like very, very, you know, not spontaneously, very, um, impulsively, I think that way so that I'm like, you know what, let me get down to dementia where I can like have a full spectrum, look and see.
[00:07:41] Maybe that person is having a bad day. Like I did X amount of years ago or yesterday. Right. So,
[00:07:47] Helen: yeah. And this, I think there's another dimension of your story, which to, you know, someone like myself, who's a New Zealand that has had to get my head around is the element of [00:08:00] insurance. But I also want to talk about, because I've, I've noticed this a lot, like I was told at first you're too young to, for it to be breast cancer.
[00:08:08] So don't worry. And I notice a lot of people with colon cancer, colorectal cancer, I told the same thing and kind of brushed it off and ignored it. Was that your experience? Did you have to fight to get the,
[00:08:22] Jonny: oh my goodness. Yeah. So it's interesting. Cause you mentioned insurance and insurance is a huge trigger word for me because I mean, in the states that it depends, and it's like a dog eat dog world where we were forced to have health care, but we had to still pull for it, especially those who made enough money, but not really enough money to actually live, just to pay the bills.
[00:08:41] Right. And that was my situation. Right. Did it give me the required health care because they were under a specific number of employees? And even though it's asking for it and saying, Hey, I'll give up. My bonuses. I don't care. I want my health to be in shock. It wasn't a possibility and that could have been costs or whatever.
[00:08:59] [00:09:00] Cause I mean, everything Wells down to profit, right. And profits are going to have, you never want to be just breaking, even, even if you're worth a million dollars, you still want to gain a couple thousand dollars every day. And so that's how I beat the insurance company. And so I had to go to the emergency rooms, but I wasn't called.
[00:09:17] Urgent care. So those places, cause I didn't have a doctor because I didn't, I couldn't pay out of pocket 300, 400, $500 if that were just one visit because insurance usually covers that right. For a copay of $20 instead of. $500 per visit. I went to urgent care. I paid out of pocket and fortunately, a good friend of mine.
[00:09:35] I believe it was the NRA recommended a doctor. He went to those who actually saw people for free or at their cost. And it was, that was phenomenal. They worked at it at an urgent care, but they, I should do it as if you were paying. Is urgent care visits are like hundreds of dollars. Right. And it'd be the same thing as seeing a primary care position, but you have no insurance.
[00:09:55] So you're forced to pay up as, so this person took me in and I came every now and then it's him. And, you [00:10:00] know, obviously he couldn't run certain tests on me cause he would have to write in the inventory and they had it. Right, reflect that. But basically I came in with bloating pains cause I am relatively healthy.
[00:10:10] I worked out four times a day, four times a day, four times a week. That day I'll be jacked. If I was playing soccer, I would run five Ks. I was doing great. I felt great. I didn't feel like I had cancer or whatever. I just felt like I had IBD like zero bowel syndrome or Crohn's because in our age group, Huge huge diagnosis too.
[00:10:31] It's in front of everyone. And that's either from diet or just genetics because genetics play each role in cancer and also just chronic lifestyles. And so I was just saying like, oh, you know what, just start eating healthier, hit up dairy, cutout cheese. And I'm like, I, my ethnicity is Italian. Like when I go home, we eat steak and potatoes.
[00:10:48] We eat mozzarella like dripping off, like, you know, more than the actual meat itself is hard. And I was drinking a lot of soda back then. And then seeing it now, like almost a liter and a half a day, but there's a lot. Right. It's all [00:11:00] sugar. And so to me, those red flags came up, but it was like, oh, it's just IBD.
[00:11:04] Oh, it's just this, nothing bad. So no, no talk about colonoscopy or anything else. And even if it were to get a colonoscopy, it would cost. So, geez, I think without insurance, it's like two plus grand, but if you get put under for the anesthesiologist, it's like an additional thousand dollars. It's incredible how much one person costs to put you in.
[00:11:25] So, yeah, it was brushed off. And then I finally got health care in 2018 and it took me six months. It's the first day of primary. And then eventually get to a specialty per doctor and eventually got me to get a colonoscopy because everything was just so delayed because the American healthcare system.
[00:11:40] Always on the undiagnosed and not preventing or preventative skin. And so it just finally came out and what I saw the Karratha surgeon after my cat scan and the colonoscopy, it was basically my birthday and that's where it happened. So it took six months, pretty more Sasha, seven months to get a diagnosis after what you think that health was, took me two years to get that.[00:12:00]
[00:12:00] Got dry, fresh, there were no symptoms. So it's just that compounding feeling. And that still happens today. Like in the American health care, the law that we had taken away, the penalty of paying, I think $600 us dollars for not having healthcare, but at the same time, you're still not covered with anything. And now that there's new laws coming out, it's just, it's not keeping up with, especially young people like us who get diagnosed and we didn't see it coming because we don't want to expect that I am relatively healthy.
[00:12:26] I work out, um, I'm pretty fit. Why'd I get called again. But again, it can be genetic like mine was, and that's the people, especially our age who are getting these diagnoses.
[00:12:37] Helen: It just blows my mind that it took that long. Okay. It's really, I don't know. I think it's difficult looking in from the outside and, you know, being like how the health system is not perfect and adult, but I've explained to other people that even for me, I have health insurance, so I used it, get my treatment, but.
[00:12:59] Had I [00:13:00] gone public, I probably would have had all the same doctors because they work across public and private. So you're not really getting a different level of treatment as such. It's just quickest sometimes to go that private wait,
[00:13:16] Jonny: like, you know, even for like going through our TSA arts for our security, for the gate, we can pay the government X amount of money.
[00:13:22] Is it X. Is it a lie and I'm like, that's not equity, right? It's and there's so many, the small things, you notice your society and it can be cross, cross country as well, like to other countries that have that, that you don't see, honestly, you really see it and it takes a diagnosis. Like we had to actually read those and it's unfortunate.
[00:13:41] We have to wait for that moment to actually appreciate and see.
[00:13:45] Helen: Yeah, absolutely. And I know that, I mean, I describe it as a roller coaster and other people have, what has the rollercoaster of cancer been like for you? What have the last three years
[00:13:57] Jonny: been like? Yeah, so it's been three and a half [00:14:00] years and it's been a legitimate liberal coaster.
[00:14:02] So if I were to scope it out, I'd be like there's total peaks and a lot of LOLs, a lot of troughs because my chemotherapy regimens, it was at a standard diagnosis. There's nothing crazy with my genetics. We mutate. Like we often talk about like K Raz or B RAF mutations, which can complicate treatment patterns and they set you apart from other people who have the same cancer as you.
[00:14:22] And this happens across all cancer lines. And so I was pretty standard, but I was metastatic. I was called out and. Oh, what is it called? Um, microsatellite stable. I wasn't really offered or given, you know, therapy, which was the new pioneering treatments, um, going through the world last couple of years because genetically and studies that showed it wouldn't work for me, ironically.
[00:14:42] That's what saved my life, this upcoming battle, which I had. And now I had a clean scan a couple of months ago through my clinical trial, which it took me to exhaust all those options, like I mentioned, and that roller coaster ride was still with a lot of. Yeah. And a few upside down turns. Right. But yeah, it's been a true [00:15:00] chaotic rollercoaster and I'm not a huge kind of roller coaster.
[00:15:02] So going through it is like, oh boy, PTSD, but that's what happened. And I exhausted everything so quickly because the campus. What about wedding, but it also was just not working for me. And, you know, it was frustrating. It's mentally distressing and that's the other part too. Mental health is such a crucial role because your mental health helps control your immune system.
[00:15:22] Everything's connected, your brain and your gut are connected. So we have to understand that medical. Uh, no medical, uh, mental health awareness and application is just as important as chemotherapy or other chemo, preventative or chemotherapy targeted drugs.
[00:15:37] Helen: It's really interesting, isn't it? Because I feel like, yeah, I mean, there was support and stuff there when I was going through treatment, but in some ways it never resonated with me.
[00:15:45] And especially once I was done, I just, it wasn't until. I don't know, I just finished her septrin because I had immunotherapy too, because of all the type of breast cancer that I had. And, um, I went to her like a weekend workshop and it was [00:16:00] the first time I had really connected with other people who had had cancer and.
[00:16:04] Spoke really openly about yeah. About the emotional impact and just that they're really felt at that stage for me, that I really didn't know how to get on with life. Nothing made sense to me anymore. I, my brain didn't work properly. You know, there was a constant fog. There was this constant kind of waking up in the morning and just feeling.
[00:16:26] You know, I think I've never been one to jump out of bed and be, you know, ready for the day. It was just kind of like this thing had happened and I had no idea how to deal with it. Yeah. So it was, yeah, it was definitely being peaks and troughs.
[00:16:44] Jonny: Let's say at least, right. You know, like Everest down to like the various tribes, that's the scope we're talking about and fitness.
[00:16:51] Yeah. And you bring them great points. You see, think differently. And it's, it's like, I often say like I transcended age just in our experience, really? When I have a diagnosis, [00:17:00] like I have aged in terms of experience so much higher than my age, but right now, Because I have seen what death looks like. I've actually experienced that through my friends who passed away from diseases similar to mine in the cancer world.
[00:17:12] And also that I've been more open to seeing things throughout news media or just up-to-date scientific updates. I'm constantly researching for my own benefit, which has helped me tremendously, which is another job. But yet we have to work and afford our current treatments that we're forced to take almost we're left to die.
[00:17:27] You know, we're kind of forced. To do this and it's so distressing, but yet it's a bittersweet pill because it does give you the benefit to see past what others see in a different dimension. And to really appreciate it, like, you know what, I see this for what it is, and I'm just going to live my way.
[00:17:44] But again, it takes a lot of steps to get there, you know? And that's the one thing is the mental capacity has to be there to thrive and to really get above your diagnosis. Be above it. And that's how you kind of win it, whether you're winning or not, whether your cancer markers are [00:18:00] saying it or not, you know, mentally, you want to be, you want to be clear and not have that fog like the United States, but just so.
[00:18:05] Yeah,
[00:18:06] Helen: and it is such a good point about, I almost feel like you can't, until you can kind of clear the mental stuff. You can't start hailing because you're still kind of in the aftershock. I think that me being me, I wanted it all to be better straight away. I've finished radiation. Thanks. Right. I'm going to get healthy.
[00:18:27] I'm going to go back to work and all of the stuff, and it just didn't happen like that. For me, it was, um, yeah, three and a half years now. And I feel like I'm just starting to kind of turn a corner and things kind of feel okay again. Yeah. It depends
[00:18:43] Jonny: on everybody, but like, I feel like it takes a lifetime to get over it and yes, whether my time you do helps contribute to.
[00:18:50] Regulating herself to others to accept things you have accepted. It's almost like, you know, when you hear about people going to AA or an a, you know, the first step is to admit you had it. And [00:19:00] a lot of times when we get told, Hey, you have cancer. It's like, huh, you accept it, but you don't really accept it.
[00:19:04] It's like a face value or surface value kind of thing. And with the release of the uglies you got through it, you really have to see all the options and. We're told, oh, don't focus on the negatives. We kind of have to, because sometimes we get soft doctors that don't actually give us full news, but at the other spectrum, like iPads, sometimes we have people who just go way too much into it and don't give you the benefit of that and saying, okay, you can get through this.
[00:19:28] We're just extending your life. And I'm like, so my doctor I'm like, no, I want to get through this. I will live with the chemotherapy. I've been through over a hundred chemotherapy treatments. I will do all that with the greatest of all and live without the rest of my day. Like one of my great friends, Diego, with the same diagnosis, I constantly have to go through a really bad regimen that I've gone through every three weeks.
[00:19:48] And he has to do what, you know, he's in remission because he's fear is that we don't know if they'll come back and that again, that mental state like, cause my cancer, I feel that pain. Oh my goodness. Is that right. I'm sure you do [00:20:00] it's
[00:20:04] feel or you feel, you feel like your lymph nodes, you know, being there, but it's like, no, you'd probably just have a common cold, but no, it could be.
[
00:20:13] Helen: Yeah, all the time and something you said before made me think about the fact that, you know, I'm 41 now. And so, but my life looks very, I stay out of the sun because I get too hot,
[00:20:30] but I, my life is very different from people in my age group because people in my age group, maybe they've just had their second child. I imagined, you know, if this had happened a decade before me, when I was in my thirties, it would have been the same thing. You know, that traditional thing of marriage, children, partnerships, you know?
[00:20:49] Yeah. You've just come back from all of this stuff and that's just not how life has turned out. And I think that had to do with wading through. The fog and the anger and the [00:21:00] sort of, you know, all of that. Yeah. Some of the negativity is coming to a place of acceptance of this is what my life looks like now. It's not the norm.
[00:21:09] I'm not beating to the same, you know, I'm not matching to the same beat other people's drums and being okay with it. Thinking. Okay, well, how, what do I want my life to look like?
[00:21:22] Jonny: Exactly. It's interesting. I do challenge people out there and shoot people that don't see themselves as normal as being like, well, there's a huge community of us out there.
[00:21:29] We are normal, your own normality. Right. But I think honestly, we have an advantage that we can honestly see past certain things and not get distressed by the smaller things of life, which often in Western society, we have bills to pay. We have this, but we see past X I'm like, you know what, bill. I mean, I do like to pay my bills.
[00:21:47] I, my credit score. I'm like, you know what? I want to play soccer tonight. I would see my good friends. I'm going to go out and get a drink because you know what? I can have alcohol. I could have. For the moment. Right. So yeah, [00:22:00] those things that you're mentioning that it's just, it's so interesting that I wish more people would understand whether they do have cancer or don't really know what cancer is to a person.
[00:22:07] Exactly. Because really everyone knows someone who's been diagnosed with cancer. I'm pretty sure, especially in the Western world, but we don't know what it feels like to have it, or to see someone with it chronically over time or their whole life. Yeah,
[00:22:21] Helen: it's crazy. Isn't it? And I think that, and this is something that I'm so passionate about now is young survivorship.
[00:22:27] Cause I kind of liked it at 41 because I had cancer at 37 that I'm, you know, like young people and young adult cancer.
[00:22:35] Jonny: You are young. It's like having this like, oh, the young adults are only 18 to 41 or whatever. The, but what's funny is there is a specific demographic that is not really cared for. Well, and that happens to be the adolescent.
[00:22:49] Like maybe I would say like teenagers, like older teenagers, specifically 18, I think 40, I say 40, but it can be 41. It's weird cause he walked into a cancer center to get [00:23:00] chemotherapy. Whenever you look around, people are staring at you. They're like, why are you here? You know, making me feel comfortable.
[00:23:07] And I had anxiety when I first walked in there, I was sweating bullets before they even put in other pre-meds that would make them sweat. And you were this ad blowout and the resource where there's so many things coming out like your podcasts and everything else, which is phenomenal.
[00:23:26] Helen: Yeah. And that's, yeah, it's totally true that we're this really strange cohort of people.
[00:23:31] I mean, I think cancer has shit, no matter what age you get it. I do feel like the impact on our lives may be as different because we're in those life stages where yeah, maybe you're a teenager and you see. Should you be focusing on school and going out with your friends and doing normal teenager stuff or your twenties, you're trying to figure out who you are, what you want to do.
[00:23:51] But when you have this major incident, it kind of stops there and it stumps it. And then there's no Time plate, you know, you don't get [00:24:00] life schools at high school. Like if you get cancer, when you're an adult,
[00:24:08] Jonny: Yeah. And here's some pictures of STI is don't get. This is what the help is. Okay. You don't have a site for half price or whatever. It's about other things too, like chronic illnesses and how to report things to doctors. So open it and break down the stigma of saying, oh my God, like I'm having bloody poo or I'm like diarrhea.
[00:24:26] We don't like to say where it's going. I did not go to my doctor, even though the, hear it all the fricking time. Right. Y, but this stigma, I think honestly for our generation is holding us back from getting diagnosed or not on time, but like way before we should see adverse effects, whether that's the latest staging or really bad symptoms or on reverse symptoms and side effects.
[00:24:48] And I think it starts there, but it's hard because mostly we have social media, Tik, TOK, and everything coming out. That's helping us like, see the world better. We still have these stigmatized terms and we still [00:25:00] keep it into ourselves where it's holding us back and our loved ones back that don't feel comfortable talking about this kind of stuff.
[00:25:05] And so not that I ship whatever, I definitely don't censor myself. And what I've noticed is my friends who actually. Who do you have, like, you know, bloody stools or maybe have like hemorrhoids come up to me like, Hey, um, should I get this checked? And I'm like, yeah, here's my surgeon. Or here's where my doctor goes.
[00:25:21] They know me. They, they left and they'll see you. And there's two people specifically. Luckily enough, there was either hemorrhages or just because of whatever it was any bad, but I love that they came to me. I'm like, yeah, that's all I cared about. That's all I wanted people to come to me. I will normalize it for you and tell him don't be like me.
[00:25:38] And that it was my, I got it. But like, don't be. Take care of it right now, especially if you have insurance or have a way to get to the doctor without breaking off your leg.
[00:25:51] Selling a kidney or
[00:25:55] Helen: don't want to wake up in a bathtub full of ice just to pay for your kid's [00:26:00] treatment. Take God don't do that.
[00:26:05] Jonny: But it's like, it's happening. Maybe it has happened. I don't know, but it's a United States thing or not like, no, sorry, my hair, I did not showers today. So I'm just putting on a hat and just trying to like, maintain my hair for.
[00:26:17] Um, yeah, after it becomes like this weird thing where I can mold it. And so I'm just like, we're just, we're keeping it. I don't know where I was going with this, but yeah. Yeah.
[00:26:30] Helen: Something else about your story and about stuff that you've written about that I'm really interested in because I failed. I, and this is just my point of view and perspective, and it is that we either have.
[00:26:42] Modern medicine, collegey. This is the regiment that you do, which is great because we know that there's a tried and true path that you can go down and that's the one I chose to go down, but then you either hit there or you have batshit crazy woo stuff that. You know, I just know I'm just [00:27:00] not down with it.
[00:27:00] These are no mid ground, okay. Here's tried and true Western medicine. This is, you know, we know this could help you and that sort of thing, but it's really hard to find good information on how else can I support myself to, to feel good or. Improve something or just to, I don't know, just to help in some way.
[00:27:22] And I know that you've spent a lot of time sort of looking into different regimes and that sort of stuff. What has been your experience with this stuff?
[00:27:31] Jonny: Yeah. So when I got diagnosed, I got my port surgery. You get the chemo for it. Um, and my upper chest. Yeah. It was like a couple of days later. I got sent to the chemo, like gimme chemo.
[00:27:42] I was like, I want to go hard and strong, not knowing what chemo really is. It kills fast dividing cancer cells very well. It also goes after healthy cells, right? Which can cause serious side effects that you can see visually or also internally as well. Right. And that contributes to hair or skin rashes or mouth [00:28:00] sores is where my preferred side effect, which I love food.
[00:28:03] Even when I was on chemo. I like a lot of food. Pet food is my coping mechanism. Or even a day makes me miserable. And, but what we didn't realize is that when you kill fast dividing cells that fast, that those cancer cells can mutate, right? And actually the mutated cells can overcome the easily susceptible cancer cells that are being killed by the chemo to the point that you chemo can become turned.
[00:28:25] I can not work for you anymore, or it doesn't really help even further and not work that after me a lot. And so after flunking out of all these chemo regimens and progression being shown, I'm like, okay, I'm going to double down and I'm going to listen to that batch of crazy people. It's funny because Western medicine says don't vitamin C or vitamin IVC therapy or all this stuff, which by the way, is proven to be correct.
[00:28:48] However, it was misinterpreted in the medical journals and propagated since then to be the stigmatized method. This is run through a bunch of medical journals and yeah, it's costing me some money, but at the same time, guess what I find [00:29:00] as an investment for me. And I'm a very curious person. I like bloody everything because I'm neurotic too.
[00:29:05] Yeah. So I found some really cool resources then. Yeah, Instagram and Facebook has helped, but reading books and readings of the authors of the books and their stories specifically, I kind of reached out to them or just watched their own story and heard their own method and then use my own. But I didn't carbon copy them because I knew that my cancers different.
[00:29:25] You know, it came from a precursor, not having a tumor recessive gene. So anything I implement, sorry, my body will escalate that they could further cause cancer or that underlining a way to get cancer. And so for me, after opening up to my oncologist saying, Hey, I'm doing this. And then shutting me out. I was like, you know what I'm going to do anyway, you can't stop me.
[00:29:44] Yeah that's right. And so I did all this stuff and honestly it helped because the things that I was on was only to maintain my health and not work that longer, much longer. And I guess the way it got me to remission twice, including this most recent time with that experiment, even a therapy I was [00:30:00] on. Yeah.
[00:30:00] It did help at the same time. The other stuff I'm doing and I'm recording it. So, you know, the biggest thing I do is I record everything on my driver blog. I will list everything about. And eventually I went to all the topics, but there's so many things I do. And I'm like, oh boy, I got that. Like talking about it, recording it.
[00:30:17] Or I prefer writing it because I kind of like my voice.
[00:30:24] Yeah, but again, terrible grammar and it's hard to come off as personable that way. And so I have to get better at recording. So this is a good first step, but yeah, anyway, to your question, it takes a lot of time and we have finite time and willpower and willingness right. Where our energy levels go down. And so we can't. I think it only helps so many times. I have so many ways.
[00:30:43] Right. So, yeah, that has been just diving into them and making them. Quote, unquote, I want to get up. My goal is to get an honorary doctorate from some university. That's what I've done. It, it's a choice and it's an investment in time and it's stigmatized and yeah, it can work [00:31:00] and it can not work. I get it everyone's cancer.
[00:31:02] Even if we have the same, let's say colon cancer, everything works differently. Our body chemistries are completely different, but walking into non-profits. Rubin basic dietary and also supplement things and also offer Ms. Drugs like statins. I've met a foreman, which is a diabetic drug to help block pathways, like glucose and fat pathways into cancer feeds off that, especially when you get to a higher staging level, when it metastasized, it goes through every path.
[00:31:30] And so you want to be able to maintain that. So that's what I kind of plugged into and I believe, and yet I'm not going to stick as high as anyone for saying, Hey, you're gotcha. Crazy. I know about the whole day thing, but I believe in it thoroughly and I believe in it more than chemo and immunotherapy, even though those are the more generic options out there.
[00:31:48] Yeah. I want to go to a clinical trial tomorrow. This one fails and says, yeah, let's do it, but I also will never give up what I'm doing right now because it is working in some capacity and I approved. I have not scattered everywhere. [00:32:00] No. Right. Yep. Post-it notes here. Here, here. Yeah. It's my case. Google drive.
[00:32:06] It's full of crap. They have to go through, but yeah, that's my next phase is to go through that and to really kind of show what I've done and to help inspire people and just question people. I want people to question their oncologist. Yeah. I didn't do the question, everybody, even though they had 10 million degrees, I'm still going to ask.
[00:32:22] Yeah, it's my life. I only have one life or maybe have more or less, but in this life right now, living that I life, I want to stay here. And so I want to preserve myself. So I'm going to question you, even though if you have 20 years of experience, I don't know.
[00:32:36] Helen: Yeah. And I'm actually think that's really good advice because there are a lot of people who will not question their doctors, you know, and I, I met people during my treatment experience that either were too scared because of, you know, systemic racism, those sorts of things, you know, the mistrust with doctors, or maybe it's a generational thing.
[00:32:54] They didn't want to question a doctor and those sorts of things. And I, yeah. Fully [00:33:00] advocate for people. If you don't feel heard, maybe take someone with you or you can't get a second opinion
[00:33:06] Jonny: right. Of recording it. And one friend dearly, she's a previvor so precancerous. Right. And her husband had an aggressive bladder cancer.
[00:33:15] So the household knows about cancer. They helped me through, but they, you know, they, they didn't record everything in question at first. And I was very polite. I like to be very polite, but now I'm getting to the point where I'm like, you know, Yeah, you've got to stand up and I'm going to question things.
[00:33:28] So yeah, bringing somebody, like you said, always bring someone because they're going to hear things you don't. Yeah, absolutely.
[00:33:35] Helen: So this is, I think for me, this is the challenge that I have is that in my experience, this is what you need to do. This is Western medicine, try it or the other extreme and there is judgment there.
[00:33:48] If you don't do these things, you clearly aren't taking your recovery seriously enough. And. Actually, I'm just doing my best,
[00:33:59] Jonny: a lot of [00:34:00] money, like for not things that insurance doesn't cover. It's a lot of money. Like I spent a little money on this kind of stuff and I have to work full-time and so having a go fund me to support and I have an amazing circle or like stadium full of fans and loved ones that will do anything for me.
[00:34:15] Yeah. I think I can do it all. I can't.
[00:34:19] Helen: Absolutely. Yeah. But I liked it though. And I think that's really good advice and I probably like it, something there. I would take on board that it should, I can do my own research. And the one thing that I think is a really good point and I actually. I learnt this.
[00:34:32] When I was going through treatment, I used to watch a lot of YouTube and watch other people going through the cancer treatment. And this one woman who had chosen not to do traditional chemo, unfortunately until it was a bit too late, but she said, if you want to go down, find alternative methods, that's your prerogative.
[00:34:50] You can research it, but make sure that whoever. Offering to treat you has treated your specific type of cancer more than [00:35:00] once or twice. And can give you, you know, like examples of how I've treated her two positive breast cancer, and this is what I've been able to do. I think that's quite an important thing.
[00:35:10] Cause cancer. It's an umbrella term for hundreds of diseases. So what works for you?
[00:35:17] Jonny: Yeah. Yeah. Your breast cancer, radiation or chemo regimens will work for me because the chemo regimens, or even your therapy regimens that you are given to, you are supporting to try to influence or deflate a specific mutation like her too, right?
[00:35:31] Like
[00:35:31] Helen: estrogen or progesterone anyway.
[00:35:33] Jonny: Yeah. Yeah, I have key Raz wild type, which means there's no mutation from those. And so luckily I don't have a lot of crazy genetic craziness, but my APC genes, which are the proteins that really help with in terms of the tumor agendas, does it happen in your body? I don't have that or it's mutated to the point that it doesn't work properly and it doesn't function.
[00:35:54] Yeah. It's a systematic underlining thing that I have to live with and no drugs right now are going to solve [00:36:00] it. I have to maintain it by using dietary supplements or even all purpose drugs, because those are going to at least hinder those things from welting that I didn't have before, which turned into cancer.
[00:36:11] So there's kind of two things. One genetic cancer aids. I want to deflate my genetic, my disposition in some way. They also want to deflate the current cancer or the risk of cancer. That's still in my blood because cancer cells are usually always there in some capacity and they could be not actively, they could be activated and one doesn't really understand cancer cash.
[00:36:31] Like he says an underlying term for thousands, maybe even millions. It's like, there's so many different facets to cancer. So when you say, oh, you're a cancer patient, I'm like, Okay. I have cancer, but also it's not just that it comes from something else. And especially cancer. A lot of my friends had breast cancer or still do, and they're young as well.
[00:36:49] And it could be the BRCA gene, which is very, very well known now, but yeah, you know, one warm event and it doesn't hit you until your twenties or thirties or forties. It. Wasn't interesting. People worry about cancer eventually when [00:37:00] they're young, not when they're 40 and they need a colonoscopy. No, get one.
[00:37:04] Whatever you can, especially, if you can get one for free or not last for a day, they set something up for you, but you're out cold. So at risk you're risking one day of not eating and you feel a little wonky when you wake up from anesthesia, that's all new.
[00:37:21] Helen: Yeah. And you get pictures afterwards and who can say that they know what the inside of the car
[00:37:28] Jonny: it's actually on my phone.
[00:37:29] I have the, I, the opera has everything in it. I always look back at it and I'm like, oh,
[00:37:34] Helen: it's a conversation starter. Would you like to see the inside of my colon? Because I do have pictures. It's
[00:37:41] Jonny: because I'm just crazy. I love making people laugh. It makes me feel comfortable. Like. He can relieve it. Like whether chemo did this to me, I don't know, but I was going to go for it.
[00:37:49] Just, I want a decent size. I was like my first surgery. I gotta make my Austin me bag. I have a ileostomy so people will also have a colostomy bag, but, um, before I even got it, I researched it. I even [00:38:00] wore it as an application, just to, and I got people to look at it. And then when I did get it, I just took pictures.
[00:38:04] It's a little bit to get over it, but I took pictures and yeah, it's a picture of me, you know, not. Pretty new, but to prove a point, because especially in gay culture, we bodies are coveted as being like six pack abs or this as a perfect perfection, right? This is the Vic category you fall in. And I'm like, you know what, let's screw this up a little bit.
[00:38:21] I want to do this and see what happens. And it's funny, it stigmatized it to the point that none of my friends, they ask about it because I tell them to ask questions, but they don't. They don't like it, what is that? But they don't, they don't have that weird look or that negative interest. They have this, like I stated with it.
[00:38:36] And it's so interesting. So we have to work on de-stigmatizing cancer and what things that are associated with cancer, and then people start to think about it and it becomes sensitized. Right. So,
[00:38:47] Helen: yeah, I love it. And I think as well, because there is so much stigma around talking about your bum or anything that comes out of it.
[00:38:53] And the fact that, yeah, there'll be so many people, you know, that we're at an ileostomy bag and it's part of. I feel [00:39:00] like my equivalent is I only have one breast. I didn't get every construction. Sometimes it gets hot and it's actually more comfortable not to wear my prosthesis. So, you know, seeing a person with only one breast shouldn't be normal, you know, because there will be so many people around the world that have different, they've had to have a breast removed or they have scarring or.
[00:39:22] That sort of stuff. I mean, yeah. Like my body does not look like the norm or the coveted. And I think the more that we, yeah, the more that we show that the less sort of stigma or fear there
[00:39:34] Jonny: is a, hopefully we all have our scars from cancer and it could be physical. I get it. A lot of it's mental too in both.
[00:39:40] And so yeah, it can be having one breast or I can have, you know, having to go call and having this bag of that. It was really interesting too, it's hard to really tell someone to get over, not get over it, but to embrace it. Whoever surrounds somebody, I say this, like I am the combination of probably the top five people I see or hang out with the most right, like center of influence.
[00:39:58] They influence me. That's where my personality comes [00:40:00] from in a way, but it's also secured environmentally and also what I've experienced myself. So if you're around people who are very much very judgmental in a negative concept, and don't really question things, I'm not going to rub off that way. So I say, look at your center of influence.
[00:40:14] If you have people who are not. Embracing the way that, you know, you want to maybe kind of out in some capacity, again, that's another conversation, but think about it, you know, having that conversation with who's around you, who's influencing you, being around people who you want to emulate as, right.
[00:40:31] That's the. That's
[00:40:33] Helen: so crazy. Oh, Johnny, it's such a pleasure talking to you and I feel like I could just talk on and on. Thank you for joining me. It is such a
[00:40:40] Jonny: pleasure. Thank you for having me. I really appreciate it. And yeah, anytime I can go back, I would love to talk to you off camera. Thank you.
[00:40:48] Helen: And if people want to find you or read your blog and those sorts of things, I will put them in the show notes, but if people are impatient, who would rather just go online, where can we find.
[00:40:58] Jonny: Definitely Instagram and Facebook or the [00:41:00] social media things like inkling on some of us, even though it's probably unhealthy, but, um, unique spelling of my name.
[00:41:06] So it's J O N N Y. And then my last name is Pulia. So P U G L I a. So if you plugged that in and you see someone with cancer, that's probably me. I don't have the Facebook links worth these days, but Instagram is always about the handle. So my Instagram handle at P U G G. She asks. L I F E so pugs length with three GS because someone took two and then one G.
[00:41:30] So I was stuck with three,
[00:41:33] Helen: I think.
[00:41:36] Jonny: So I'm more of a pug than they are. I wouldn't say that then my driver log as well, you can just type in my full name, Johnny polio.com that will get you there and you can search. And that has all my stuff on it. So if you want to stalk me, go right ahead, go there. You can see what crazy stuff I've done or what I've talked about.
[00:41:53] I love also interviewing people like you as well for my blog too. So if you would liked to go share, you love to [00:42:00] feature you because I bet you have an amazing story and also just a light, you emulate a lot. So I love it. I just love talking to people who have cancer, who embrace it, but also bring something towards it.
[00:42:10] So, I mean like, yeah, if you can find me there. So I got to talk to Michelle. Stop.
[00:42:15] Helen: Thanks so much for listening. Every Sunday at 11:55 AM on Auckland 1 0 4 0.6, planet FM. And any time it DubDubDub dot planet, audio.org dot INSEAD foot slash the C word.
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