What happens when a routine health check-up reveals a shockingly high PSA of 51.9 with no symptoms? For 51-year-old Jason, a biohacking enthusiast dedicated to staving off chronic disease, this was the beginning of an unexpected and arduous journey into the world of high-risk prostate cancer. In this episode, Jason and his partner Natalie share their powerful story of navigating a terrifying diagnosis, battling a frustrating healthcare system, and becoming a prostate cancer patient advocate out of sheer necessity. This is a story about taking control when you feel powerless, the tough decisions that follow a diagnosis, and the profound impact it has on a relationship.
Jason’s experience is a masterclass in patient advocacy and resilience. After the initial shock of his diagnosis - which came shortly after Natalie’s father passed away from the same disease - Jason dove headfirst into research mode. He shares how he learned to speak the language of oncology, question doctors, and push for timely appointments and tests like MRIs and PSMA PET scans, effectively quarterbacking his own care. You'll hear the detailed thought process behind his prostate cancer treatment decisions, including why he opted for surgery over radiation, and how he processed the devastating news of a biochemical recurrence prostate cancer just months after his operation. This recurrence led to a new, grueling phase of treatment: Androgen Deprivation Therapy (ADT) and daily radiation. Jason gives an incredibly honest account of the debilitating side effects of ADT, from the 40-50 daily hot flashes to the severe sleep disruption that left him exhausted. Throughout this journey, Natalie provides a raw and essential perspective on how to support a partner with cancer. She discusses balancing her own anxiety, the importance of being present at appointments to be a second set of ears, and the critical need for self-care to avoid burnout. Together, they offer invaluable, practical advice on everything from asking the right questions to your oncologist, understanding your Gleason score, and the emotional toll of living with a cancer diagnosis.
Introduction
Eunice: Hi, I'm Eunice. Welcome to Before Our Visit Ends, a space where we take a moment to get to know the whole person beyond their cancer diagnosis. Along the way, we'll gain meaningful insights on living a life that is not defined by cancer. These stories are sometimes heavy, sometimes unexpectedly light, but always honest. During this podcast, my guests and I will be sharing personal experiences and discussing medical information. That said, the information we share is based on our own lived experiences, perspectives, and personal understanding. This podcast is not intended to replace medical advice. Please consult your own healthcare provider or licensed practitioner with any questions or concerns about your diagnosis or care. Before our visit ends, it's not responsible for any outcomes related to information shared in this podcast. Each episode is shared with the hope that someone listening might feel seen, better understood, or more informed. And with that, let's begin today's episode. Thank you, everybody, for joining our podcast today on Before a Visit Ends. Today, we have Jason and Natalie on the podcast. Welcome, Jason. Welcome, Natalie. I'm really excited to have you both here. I think this is going to be an awesome visit. Before we start, I'd love to have Jason and Natalie, you both introduce yourselves. Tell us about your background, and then we'll get into more details.
Jason: I am Jason. I'm 51 years old. And in 2024, around July, I was diagnosed with prostate cancer.
Natalie: And I am Natalie. I'm Jason's partner. We've been together for 12 years almost. And yeah, it was quite the surprise to get the diagnosis, maybe for some additional background. And how this plays into our story is that we actually lost my dad to prostate cancer last February. And so it was quite a surprise. We were not expecting it. We were never expecting it. I don't think anybody ever is and then to have gotten the diagnosis so soon after my father's passing was something that was really quite scary and terrifying. And although we had been through that experience with him, I think where we really learned so much was actually at the time of Jason's diagnosis.
Eunice: Your dad was he diagnosed and then he lived for a long time or was it pretty much time to diagnosis and then unfortunately passing away was a short period of time?
Natalie: It's all very short. I think my dad was a very private person and there may have been a point in which he was told that his prostate was enlarged and he got tested and that it was early. Because my dad was older, I think that they probably did just monitor the situation. And by the time that he told us of his diagnosis, he was at stage four. It had metastasized through his body. And at that point, we were just buying time. So we got almost two years from the time that he was diagnosed to the time of his passing. And he went through chemo, he went through radiation. And I think at the time we were notified, his ESA was in the 30s, I think it was 35 or 36. And then when Jason was diagnosed which I'm sure he'll get into, it was 51 or 52? And so it was very scary to have had that.
Natalie: Diagnosed initial PSA number because we had my dad's PSA number, which was half, almost half that. And it had metastasized. So, it was going to the worst case scenario. Everyone thinks prostate cancer is one of those cancers that, of course, it is statistically one of the best cancers to get. You have a typically a 98% or whatever success rate and long-term survivability and living through things, it's likely you will die of something else from the cancer itself. But again, when you have that kind of background, it's just something that jumps out at you and you go immediately to the other end of the court.
Eunice: Yeah, I agree with you. And it's really something we're going to get into, especially with Jason's age. So yeah, it is true. You always hear you'll die of something else before you die of prostate cancer. But what stage of prostate cancer are we talking about? Like someone who has a stage four prostate cancer has different survival outcomes than someone that's diagnosed with an earlier stage prostate cancer and then taking into account Jason's age. And so those kinds of things, I think, make you think a little bit differently about that phrase that's always being said. And we'll come back to the medical stuff before we get into a lot of I really want to hear about you lives together 12 years. That's amazing. So that's exciting. How did you all meet?
Natalie: We met through friends in Greensboro, North Carolina, actually, where we're from, originally, well, I'm from originally, Jason's originally from a small town in Virginia. And he, we met and we really just hit things off, dated for two years. It was funny, at the time when we had met, I was really serious about moving to New York and said, I can't get into a serious relationship because I have to move to New York. And so after two years being together, I said, look, I'm still really serious about meeting to you. So either you're coming with me or I'm going alone, and he was amazing. And he made it work long distance for a little bit of time. And then COVID hit. And it was an opportunity really for Jason to move permanently through that experience. And we have been here originally, lived up on the Upper East Side, now live in Brooklyn. And we've got a great apartment with the backyard. So I spend a lot of time gardening and Jason eats all of my tomatoes. And we're really fortunate to have a great circle of friends as well. Really support system. Friends have dogs. So while we don't have a pet and we'd love to have one, we get to have fur babies on the occasion. And that's really nice.
Jason: Maybe to give a slight bit more detail on what Natalie said, I actually saw Natalie for the first time in a coffee shop. She was working in a Starbucks. How cliche. But at the time, I was in a committed relationship. I was enamored with her, but I didn't want to be that guy that asked the barista, the Starbucks barista out on a date because I felt sure that she was getting a lot of offers every day. I took my coffee and went about my way. And then my girlfriend at the time had a friend who I wasn't the fondest of necessarily, but she really liked to hang out with him. And so I agreed to hang out for the umpteenth time one afternoon, and we went to a food truck rodeo.
Jason: He showed up with his new girlfriend, which was Natalie. So that really put salt in the wound, so to speak. Because to be honest, things weren't great in my own relationship at the time. We were great friends, and we remain great friends to this day. But it just wasn't that kind of connection, to be honest with you. And the writing was on the wall there. But again, I'm not that guy. I'm not a disruptor in that way. And so I just let it ride. And we actually all hung out together a few more times. Or maybe I'm just remembering it a few more times, but it was one too many for me to just to keep seeing that image. But then eventually there was some time passed. I had decided to move out. Natalie had nothing to do with it whatsoever. So I moved out on my own and then I ended up running into Natalie at some of the usual haunts around town. First at a gym that I don't normally even go to. I was training someone that day so I ran into her there and she told me that she was sorry to hear that I was solo again. She was like, yeah, I actually am also. I moved out as well.
Jason: But again, it was a very strange situation because, our past significant others were good friends and it was a bit strange. But, fate is fate, I guess. And we ran into each other a couple more times.
Jason: And finally she was in a wine bar with her mother and I just, finally went up and said, hey, introduced myself to her mom and said, oh, by the way, I don't think I have your number in front of her mom.
Natalie: Is a bold and patient man.
Eunice: Yeah. I have to ask, though, I'm curious and I think other folks might be curious. Did your previous partners end up together?
Natalie: No. It wouldn't break out.
Jason: That would have been hilarious.
Eunice: Like a swap. It sounds like they were friends, but it's not. OK, it's a great story. And then maybe we can dive into some of the diagnosis. And I like to hear the story because I think it sort of sets up the stage of the relationship that you both have and the support system that you have been to each other, I imagine. And so, Jason, what prompted you to have a PSA check? What started the whole diagnosis? How did things start?
The Shocking Diagnosis: A Routine Check-up Reveals a High PSA
Jason: So I had been to a urologist, I don't think, ever in my life. But, I was all into this and still am into biohacking and trying to live forever and stave off cancer and heart disease or whatever.
Eunice: What's the name of that guy? There was a documentary recently on this.
Jason: Bryan Johnson, I think.
Eunice: So that's sort of similar what you're into?
Jason: Well, I didn't have the money. I didn't have the funds to quite go that far because he's spending like two, three million a year on it. But, yeah, I was doing tons and tons of research. Cause I do have heart disease in my family and no cancer in my family, but I was just determined not to get on, have some chronic disease. And especially because there is a little age gap between Natalie and I, so I have a deficit to make up for. So, yeah, I stayed on top of most everything, getting MRIs and CT scans and ultrasounds, all kinds of things. Never, ever thought about this at all. Really until we lost Natalie's father, that then it was on our radar. And we're kind of, we're the no kids forever couple or one of those. So I went in really for two reasons, really to talk about a vasectomy because Natalie and I both frankly had had enough of the IUDs and the, just the birth control. It was wreaking havoc from a hormonal perspective on Natalie's system.
Jason: So I said, yeah, let's do it. So I went in to talk about that because I was establishing myself as a new patient at this urologist. She wanted to run a baseline of everything. And part of that was obviously your PSA, testosterone. The whole nine. So we did that. And I never got a call. I think two days later, I was on the train. And you know how things are these days. They get posted to a portal of some sort, your lab results. I was on the train and I pulled it up. And of course, here in New York, you only get service when you're at a station. So in between, I was logging in, trying to get that to reconcile. Okay, now I'm scrolling down. Okay, it's not loaded. So by the third station, I was scrolling down far enough to looking at the abnormal column. I'm like, yeah, yeah, everything's cool. Everything's cool. And it said abnormal. And I looked to the left and it said PSA. And then I looked back at the number and it said 51.9. And I got a big knot in my stomach and in my throat. It was pretty upsetting.
Natalie: My brain went to, it's wrong. They just have to do it again. These things happen. Maybe they swapped your blood sample with somebody else's. What if it's an infection that might be causing this? There's just no way. There's no way the universe would do this to me. And to Jason, after losing my dad, and I just was so beside myself. I remember we had a friend over that night where I was grilling him. And I just didn't even know what to say. I was just beyond beside myself.
Eunice: It's also surprising too, because most of the time, maybe your urologist or primary care provider feels something and you're going in for these labs because there's maybe suspicion. So what sounds really tough, I feel like, about this diagnosis is that in general, I think sometimes when you're getting lab work done, you're looking for something. So you're potentially expecting a result. But for yours, it was almost very unexpected because you were almost going in thinking, I want to make sure everything looks good and not expecting that something might not be normal.
Jason: Totally. This was the last thing I expected. Like I mentioned, I had been very proactive, almost to a hypochondriac level, to be quite honest. And it brought on some anxiety over the past couple of years around just heart health and diet and exercise. And I'm running to the doctor every time I feel some kind of pain, thinking it might be I have some sort of chronic disease. Maybe it's even something acute, even though, by all intents and purposes, if you look at me and my lifestyle, nothing was pointing to any of that. It made me some stress and causing the anxiety. So I was looking for everything. I was constantly looking for answers and really coming up empty on everything but not even for one instant did I think that my PSA is going to be high. Certainly not that high. Certainly not on the heels of losing, Natalie's father. I just thought there's no way the odds cannot be against me in that way. You never think it's going to be you.
Eunice: How did you come to terms with the diagnosis like that? Especially when you had been, in a way really, I don't know if the right term is anxious, but really making sure that you were doing everything possible to make sure that you're taking care of yourself in the best way possible. And is it something that you all have come to terms with? Or are you maybe more so in, how do we manage this mode? What is the next treatment? and when does this treatment end or where are you right now with the diagnosis?
Coping with the Diagnosis: A Couple’s Contrasting Approaches
Jason: So Natalie and I approached this differently. She can definitely speak to how she felt about it, but I immediately went into research mode. I wanted to prepare for the worst basically. And so I, fortunately, and this sounds odd, but fortunately all the research that I had done for every other ailment and the biohacking and the diet and so on and so forth, that prepared me really well to be able to just jump in and just focus directly on prostate cancer. And because we knew very little about it, sometimes I think I look back and shame on us, when our father was diagnosed, but he was a very private person. And he, as it progressed, he kept that very close to himself for quite a while because he just, he was that kind of guy. He was just very happy go lucky and let's live for today. But same time, he didn't want to worry any of us. And so he brushed it off quite a while until he couldn't anymore. And we didn't dig into it any further either, because we, I guess, respected the way he wanted to approach it.
Jason: With me. And so I didn't know much about it at all. I knew what a PSA was, but that's it. So I dove headfirst and just started consuming any and everything that I could, every YouTube video, every article, white papers, diagnosis, based on what I knew, what were the next steps that were typically taken. What was the cutting edge on procedure, treatments, everything really. So that was my way of go was to just, that was the only control I feel like I had and maybe to some extent still have to this day is just to stay uber informed and grab it and go.
Natalie: And I'm very much the opposite. I am my father's daughter. And I think for me, it was very much, I want to just take things day by day. And I want to live in the moment. And I want to just be with you in present and try not to think about the what ifs and the different scenarios. I think Jason is an incredible researcher. He's very patient, but he also, like you mentioned before, can sometimes be to a detriment and make things bring more anxiety than it does actually answers. Because there is, again, the question of, well, what if this happens? This is the research that has led me down this path and, et cetera, et cetera. Versus, okay, we have, this is the stage we're at and let's try not to think about what happens too much far in the future because we just can't predict it.
Natalie: And I might be to a fault, more of a head in sand situation.
Natalie: But I really leaned on my friends and family and Jason, and I really trusted him because not only was he doing all this research, he was also researching doctors, oncologists, who we should meet with, who we should talk to. And we were also very fortunate to have connections through friends who were able to put us in touch with some really exceptionally well-renowned surgeons, because ultimately at the end of the day what ended up happening was with Jason's diagnosis which obviously we can get more into, with his initial biopsy results. But his urologist at the time who we were talking about earlier made the recommendation, she was amazing by the way her bedside manner was fantastic. She was a very direct person which I appreciated. She was like, we're just gonna attack this. And her recommendation was surgery, which spoiler alert is where we ultimately what Jason already ultimately went. And so we were very fortunate to have those connections to talk to surgeons but then we also talked to a radiologist, a real oncologist rather. And so to get the perspective of what if he went with radiation initially versus actually doing surgery. So I kind of was there to be in, again, a more supportive role for Jason. And then I leaned on my friends to give me that support as well.
Eunice: And I think that's, to me, just hearing both of your perspectives sounds like a really good balance, because if both of you are, it's all going to be fine and no one is actually doing the research, sometimes that may not always be so helpful. And then if the other person is only doing the research and really just being very meticulous, I think there's moments I'm sure that, Jason, you ended up probably needing to lean on Natalie. Because I'm sure at some point, at the end of the day, once you close your computer, it does hit you that I have cancer and she's probably the person that you go to for that emotional support.
Jason: Up 1000%. Natalie tempers me in so many ways throughout life and there was no exception around this. And it continues to be that way, just to try and bring me back to somewhat neutral point because I do tend to be very OCD with something that either I'm interested in or something that needs direct attention like this does. I'm all in and sometimes I need to step back and see the bigger picture and not focus on it too hard.
Eunice: Yeah, and that makes sense. When you were deciding, it sounds like, Natalie mentioned you ended up having surgery. You talked to the radiation oncologist about radiation therapy. I know there were conversations about ADT. At what point do you do ADT, do you not do ADT? Because you're so analytical and so smart already, how was that? Were you asking a lot of questions and were you feeling like you're getting the answers that you needed? Or were there times when you already felt like you already had an answer and you had so much more research than even the person that you were speaking with?
Becoming Your Own Healthcare Advocate: The Importance of Research and Persistence
Jason: At times yes. It's important to be your own advocate and be as well-informed as you can be. Because I used to always say this, when you have your appointment, you have your 15 minutes of fame and you better make the most of them. If the doctor, if it's a urologist or if it's a radio oncologist, whatever their title may be, if you have to spend the bulk of your appointments and getting explained to, whether it's something simple as acronyms or maybe a standard of care or just how the surgery may go, you're wasting so much time. If you can go in there and at least be able to speak some of the jargon, and it can be overwhelming, especially if you've never even dipped your toe in any of this research, it can be daunting for sure.
Jason: I was already pouring over white papers about heart disease or whatever on an average day. So it was nothing to me just to switch gears and really focus on my cross-site case. And I've always been able to learn very quickly. If it's something that I really want to consume a lot of knowledge about, I'm able to digest it and retain it really easy. And so, yeah, I went into some of the appointments, particularly the PAs, not to, listen, there's a role for everyone, but I felt like I would oftentimes go into meeting and you're not seeing a doctor all the time. A lot of times you're seeing a PA and I'm thinking you're, you're not adding anything to this discussion at all. I'm leading the discussion. I'm telling you what the next step is. I'm basically prescribing my next step in the care process. And I'm dictating at this point who I want to meet with.
Natalie: I think there was frustrating points too when we would go in and they didn't even have an opportunity to read a chart or understand Jason's chart before even coming in. I don't necessarily fault any of the positions that we have met with. It's a product of the system, making the inability for doctors to be able to spend more time with patients. And so if you're back to back, how do you have a moment to really even take a second to read over a patient's chart in two, three minutes before you walk in? Because then you're taking up that 15 minutes that Jason's talking about.
Natalie: And so I think that it is really challenging as a patient or as someone who's going in just to even support to say, what are we here to do? And so Jason, a lot of times, would write down his questions or the things that he wanted to talk about before we went into the meeting because he was like, we got to really focus on this. And this is, these are questions I have, boom, boom, boom, these are the symptoms, boom, boom, boom. And I think his research of, okay, what does this test mean? What is this test actually telling me? You've ordered this, but now in between the time between we get the results back, let me do my research on what is this test going to actually diagnose? And what do we take, what is it going to feed into decision-making? He did that a lot in terms of just, okay, now we have this initial biopsy. From that, we have a general Gleason score.
Natalie: And then that's pre-op, post-op, getting that information. Jason, there were a couple of other tests that were around the genetics, maybe even. It was there's a few different things that were, again, clearly, I've not done as much research, I can't even remember the names of these. But, he stays on top of it. Exome sequencing, so staying on top of it was really, really big and writing it all down, because you get in there, and then sometimes they talk to you. And I think it is important to bring someone with you. Because while Jason is writing down his questions, when we were actually talking to the doctor, I think you're so overwhelmed even with the information because emotionally you're like, we're going through this. This is happening. I'm having to have this conversation. So to have a second person with you to bring you back and say, okay, this is what was said. This is what I heard. Because there were times where we walked out of an appointment and I was like, that's not what they said. This is not, we heard different things. And so it was important to have, I think someone with you at all times.
Eunice: That totally makes a lot of sense. I know that, Jason, because you're able to read the white papers, you're able to learn really quickly. If you could think about some of the questions that maybe your listeners that aren't able to just be able to gather all that information so easily, what stands out to you as some of the important questions to ask? I know Natalie mentioned if they're ordering a test, what does this test mean? What does this result mean? And what are the next steps? Are there any other questions that you would say are important for patients and their family members to be asking? I know for me, one of the questions I always think about is a lot of times about weighing the different treatment options, but I'm just curious if there's any other questions overall that you think people should ask.
Actionable Advice for Patients: How to Navigate the Healthcare System
Jason: Yeah, for sure. Prostate cancer is a very heterogeneous disease. It affects each person differently. It grows in each person differently on the PSA really in the beginning it just tells you something needs to be looked into. My PSA being that high, our initial reaction was well it must be prostatitis. It can't be prostatitis, which is valid, but it's telling you okay we need to look into this more so typically the next stage would be an MRI. And the Insurance companies almost always will request this before you get to a biopsy in any way. So, my first question would be like, okay, whatever your PSA number is, and some guys that I talk to on the forums, on the prostate cancer forums.
Jason: Their PSA may not be, maybe six. And they're way further in with the disease than even I. So it is very patient-specific. So don't immediately jump to any conclusions. Ask for, okay, what do we do now? But don't settle. Should definitely push for an MRI to look into this further. The standard of care is, there is a timeline and a order of events that need to occur. So you got the PSA, okay, you need to look into it. What's the next step? The next step is MRI. What's the next step? Then you go to biopsy. So you have to just know what the standard of care is ahead of time. And if they're just trying to shrug this off as, and it could be something as simple as prostatitis, but you need to be prepared that maybe it's something else as well.
Natalie: I think too, even when you're having those conversations and they're recommending that the next steps it's important to also know that again back to being your own advocate. The initial thought was we weren't going to be able to get Jason's MRI done for a month. And for us that was just unacceptable, to wait a month is just crazy. He called every day twice a day to be able to make that happen sooner so that way we could have answers. So don't be afraid to call, to ask to be on a cancellation list. This is your life. This is, you only get the one. Yes, people are doing this every day and are doing the best they can, but no one's going to advocate for yourself like you do. And so, coming up with the questions or pushing for a better timeline. One of the things that was always very frustrating with me for my dad's treatment was that we would go for follow-up visits for the doctor.
Natalie: They would do the blood work the same day. And so we wouldn't get the new PSA number until the following day after we've already met with the doctor. And now we're not going to meet with the doctor again for another month. And Jason, they want to do the same thing. He said, uh-uh, I'm going to come in. I'm going to come in a week before. I'm going to do my blood work, and then we're going to meet in the following week so we can actually have something to talk about. I don't know why this is part of standard of care, seemingly, that people don't want to take the lab work prior to. I'm sure it's an inconvenience to go in twice to get your blood work and then come in to speak with the doctor. But if you really want to stay on ahead of something, advocate for yourself to be able to do that so you actually have the most read information to discuss. Otherwise, you are left in the dust for another potential several weeks to figure out what your next step is because that doctor's busy. They can't, they just met with you yesterday and now they're going to have to wait to talk to you again or you're going to have to wait through messages in the portal if you're lucky that they'll get the chance to respond or call you. And it's just, it's causing more work for everyone. So if you can take the extra time to actually do your lab work before you go to your doctor's appointment, highly recommend to do that.
Natalie: Just stay on top of it. And again, just advocate for yourself. Call for sooner appointments, be on a cancellation list, find other potential avenues to get your any testing done. For Jason, for his second MRI that he needed, there was going to be another wait. We found another private MRI outside of the hospital network to get that done, to be able to have those results sent over for the images and have that reviewed to determine what next steps were going to be because that MRI hinges on getting the PSA PET scan done.
Natalie: So it does matter. And so I think more so than even questions that you have to advocate and say, what do I not know? What can I do to move this along faster? Because we all know that cancer is about time. There's replication. That's what the cells are doing. They're bad cells that just replicate. So how fast can you move this? Obviously, if you catch it earlier, you probably have more time. If you catch it later, time is of the essence. But you don't want to get to that point. And I think it's all about really just moving things ahead. So that's kind of my perspective on that.
Jason: Yeah, I could just add to that. Yes, it is about time, but prostate cancer typically is a slow goal. So I guess what I would say my advice would be take a breath, give yourself time to maybe do some research and learn a few things. Don't jump into treatment, if you can help it. And with the healthcare system the way it is, it's not going to be a problem. I'll get to that in a moment. But just take a minute to try to digest some of it and figure out, okay, what do I need to do here? But with that said, for me, my PSA was so high, like egregiously high. It suggested that something could be very, very wrong. So that's why we were a bit more nervous taking what it's good things moving.
Jason: You absolutely, in this healthcare landscape, have to be the quarterback. You cannot be the receiver. You've got to be the driver. You cannot be the passenger. If you just wait. I see this all the time on forums. I talk to guys, as I've had treatment, treatment's ongoing. We'll go there too. I talk to a lot of guys and they just sit back and they're the receiver. Well, my doctor said, do this. And you wait and you wait. And, it's six weeks and it's two months and it's three months, and it may be okay from a treatment perspective for that particular person or not. But moreover, you've got to consider the sense of or the lack of control and the emotions that you're feeling during this time. If you're just sitting around waiting for your next appointment and it's in a month or two or three or whatever, that really works on you, emotionally. So for me, I wasn't willing to do that, even if it was OK in the long run. So everyone's mileage may differ, but I was relentless about just moving appointments up as quickly as possible, getting in to see who I wanted to see, when I wanted to see them. And it was not easy at all.
Jason: It was, and continues to be in a way, a full-time job to just drive and drive and drive. Because the system's overloaded. These people, the people are super busy at every level. So you've got to be the one that's screaming the loudest.
Eunice: I like that advice. You have to be the one that's screaming the loudest so that you could be heard. Because if you're the if you're quiet, no one is really going to hear you.
Jason: But always being courteous and respectful, I don't want to say, I'm using that screaming loud. This is totally as a euphemism. I like them to remember me. I want them to remember me. I want to be memorable every time I go in. I'm learning everyone's names. Hey, is this my call? Hey, is this Elizabeth? I know her voice. It's important that I address them by names because you only have to do that once or twice and then they remember you. They're like, oh, I'm at a disadvantage. This guy knows like everyone's name in the office. So, oh, that's Jason. It's just human nature. It works.
Eunice: What is your, I know you said we're going to get into it, but I think it might, I think it's the perfect time to get into it. What is your current treatment? I know we had the surgery. And how has treatment been for you?
From Surgery to Biochemical Recurrence: Jason’s Treatment Journey
Jason: So, surgery was in October. Just a quick timeline. And I went and urologist in July, officially diagnosed in August via MRI and did a PSMA PET scan to see if there was any spread. Both of those showed contained. So at that point, I made the decision for surgery rather than the radiation. Because of my age, I wanted to get it out because the PSA was so high. What if we radiate and everything is not taken care of? There's still just a huge potential there. So we made the decision for surgery. October 17th, got the thing out of here. Unfortunately, post-surgery pathology, I went from a stage 2 Gleason 7, 3 plus 4. The Gleason stayed the same. This is a little bit technical here. Gleason stayed the same, but because I had extra capsular extension, meaning when the surgeon got in there he found evidence of the cancer outside of the prostate, I went from stage two to stage three A. So he's like, I think I got it. We want to watch you very closely. So I was on the six weeks cadence with PSA testing. So immediately after a surgery. Here we go. Six weeks. The first test was 0.036. That sounds extremely low.
Jason: Post-surgery, it's not low enough. It should be undetectable.
Eunice: Because it's still detectable. Yeah.
Jason: Yeah, still detectable. 12 weeks, miraculously, it was exactly the same number. I still don't know how that happened, but it was 0.036. Okay, 5. 18 weeks, 0.114. So it almost tripled in that third six weeks period. So based on extra cap and solar extension, based on my high, super high PSA, the doctor, the oncologist that I was working with, and I both agreed, this looks like and is probably nothing but a recurrence, a biochemical recurrence. So he prescribed ADT for me, Orgovyx, which is an oral testosterone suppressant therapy. It works very quickly. It's one of the newer ones. It's like a tier one hormone suppression. It works quickly. It usually leaves quickly too. So I had the prescription. I really said all along that I would not do ADT because I knew about the side effects.
Jason: They come with it. I was already dealing with side effects from the surgery, which take up to 24 months to really heal. So jumping back into a treatment so soon would arrest the recovery. And we knew that. So I think I took another week looking at the prescription bottle. And then I finally decided, okay, what am I going to do here? My PSA is just rising. I started and within a week, I in one week I had my PSA tested and it dropped to 0.07 and my testosterone had dropped from mid to high 500s range is usually from 300 to 900 depending upon age and just individual. It's a very subjective problem. I was in a mid to high 500. It had dropped to I think below 50. So we knew it was working. There was no surprises there. And then a few I think a month in or so I had another PSA and testosterone check testosterone was now below 3.
Jason: And my PSA was undetectable. It was below .006, which is undetectable. That's as low as the test goes, the ultra-sensitive PSA. So that was working, and the theory was to buy me some time on the ADT to keep the cancer starved, basically without the testosterone. It can't really grow. To give me some time to more time to recover.
Jason: And then in July, mid-July, I started a radiation therapy for the recurrence. 39 sessions. I'm nine sessions in with 30 more to go. I go every day. We live here in Brooklyn. Every day I make the trek. It's over an hour one way on the train up to 103rd Street in Manhattan to lie on the table for 15 minutes and have treatment.
Eunice: That's a lot yeah.
Jason: And it comes with its own set of side effects. It does, it exacerbates the side effects already that you already had and then it comes to a whole nother set.
Eunice: And we didn't even talk about the ADT side effects on top of it as well that you've had to deal with.
Managing Treatment Side Effects: The Reality of ADT and Radiation
Jason: Yeah it's pretty brutal and that's why I swore that I wouldn't do it in the when this whole thing started. I told myself if it comes to it, I'm just not taking, I'm not willing to go through it. But then of course when you're up against a wall, it tends to be a different story. But it sounds so silly, all women go through menopause and have hot flashes. So basically thrusts me directly into menopause, whatever to be in this different names for it. But I have 40 to 50 hot flashes per day. And in the heat of the summer here in New York, which is a huge concrete oven, and we've been having above 90 degrees every day the past couple weeks seems like. That is no fun whatsoever, especially on the train platform. It's 110 degrees down there. But even more so than that, it's the sleeping. So I wake up every 30 minutes. It varies every night, but usually about every 30 minutes I wake up with a hot flash.
Jason: I have to sit up in front of the fan and cool off and we keep it at, we keep the AC set at 69 as is. But yeah, it's very disrupted to my seat. And so I can't get a nice stretch of REM sleep or restorative sleep of any sort. And so you can imagine, go to bed at say 10 and I'm not getting any sleep and I might, very late morning I might get an hour or an hour and a half uninterrupted and I'm not even sure why that is the case, why I'm able. I think maybe I'm just so tired at that point that my body just say well here we are and maybe I seek through those final hot flashes but I wake up exhausted.
Eunice: Are you still working?
Jason: No I'm not. In March I was with the company for quite a while and then as part of being able to stay in New York after the return to office, I switched over to a contractor role at that same company. And there is a set, there's a limitation on how long you can contract for. So that was coming up in March and the plan was for me to do a limited liability corporation, form my own and form my services out to the company. And that was all in the works. They were fine with that because they were located in North Carolina, basically corporate bureaucracy. But it was all in the works to happen and then unfortunately the stock tanked, that company a couple months before my contract was up and contractors are typically the first to go. And so since I relinquished my tenure of 10 years, I was on the chopping block, so they didn't renew. I worked my contract out, but then they just weren't able to renew it. Natalie and I talked about it, and Natalie very generously just said, hey, just worry about getting well and figuring out what this treatment path looks like. So that's what I'm doing.
Eunice: And I'm sure maybe it's I'm hoping it's helpful to not have to make the trek every day to go get treatment and then trying to figure out your schedule of how is work fit into me being able to get treatment. So I hope after some treatments, maybe you get to grab a coffee somewhere or look at a bookshop or something just to maybe take your mind off.
Jason: Yeah, right now I get up late, usually late morning. I get up, make some breakfast slash lunch, get ready and go because again it takes, I have to be there around three so I need to leave before two in order to get there. So I've got a couple hours there just to pull myself together in the morning or in the middle of the day, I guess, and then get up there. So it's taking the whole afternoon. I'm not sure how I would have done this if I'd started a new gig. You know how it is when you start a new job. There's a lot to learn, and I'm not sure how I would have been able to say, hey, I'm going to be gone basically the whole afternoon for the next eight weeks. So, it's instrumental, really. I don't know how I would be able to do this. And I'm very, very, very fortunate, that we're able to handle it this way because a lot of guys have to continue work and whatever agreement they work out with their employer, there's a lot of latitude that has to be given there for sure.
Natalie: Again, another outside just the general fatigue, it's exacerbated by just general heat and the humidity and just being summer and the travel. So it does it to be a lot.
Eunice: Are there things that you all are doing in the midst of going through treatment that you have been able to do just to bring some fun and joy into your lives? Or has it felt like it's really just been consumed by treatment and thinking about the next treatment and the decisions that have to be made?
Finding Joy and Normalcy Amidst Treatment
Jason: I tend to keep a lot in my head. So it is at the forefront of most of my thoughts. But I welcome the distractions. And that's where Natalie tends to come in. Her sister just got married just before I started radiation. So everything leading up to that, all the planning and the what are we going to wear to this and that event, all of that was a really a welcome distraction. And then we try to hang out with our friends here at Natalie Mission. We have a garden out back and we invite friends over just to do whatever, just to hang out or do whatever. We find excuses to hang out with them. And then Natalie and I really, we love the city because of the things that are available for us to do. We love old school jazz so we could go to see artists or that we have foreign relationships with over the years of being here, get dressed up and try to celebrate.
Jason: Milestones whether it's birthdays or anniversaries or just because. And so that's we have tried to continue to do that. I can't say that we're, have kept the same exact same pace up as we have in the past, Iguess, since we were doing that part of it but we still try to keep some of that up just to as a distraction really for even if it's just for a couple hours.
Natalie: I think the distraction is really what it is and if probably left to his own devices. Jason would be a hermit socially even. So I really try to finagle and plan things. But I will say too, when we first got the diagnosis, our friends and especially guy friends reached out and said, what can I do? And Jason was really just honest and said, just community, man, invite me, look for a walk or coffee or help me get out like what's the place in basketball. Jason was really very honest about what he what he needed because you think about especially when you hear someone like oh you have cancer what can I do? What do you need? People want to do something and a lot of times the easy thing is, oh yeah, I'll get you a DoorDash gift card or whatever but the what really matters is the time that you spend and you show up to spend with someone.
How to Support a Loved One with Cancer: A Guide for Friends and Family
Natalie: And I think it's always so interesting when we see people too, everyone is like, well, you look great, man. You don't look like you have cancer. And it's like, well, no, not necessarily. I think we have this image and that media has definitely portrayed an image of what cancer looks like. That's true when you're in hospice or you are in pretty, pretty bad shape, but cancer doesn't have to look any which way. It certainly can present.
Natalie: You might not have symptoms at all. Jason didn't have symptoms. And I think that's important for people to recognize too in a way of, hey, just because you present a certain way or someone else does, doesn't mean that you necessarily know what's really going on in their life or what their health may be, what your own health may be. And that's why it's important to take control of it and ask those questions.
Natalie: So when you see someone and they tell you, I have cancer, maybe don't say they look really great. If you just maybe just you say like, I'm here for you and anything you need, whether that be time or or food or cooking or or a distraction, you want to talk about it, you don't want to talk about it. Everybody is so different and there's a and back to your earlier question about processing, there's a grief. There's a grief that you go through when you get that diagnosis. So there's a process to to getting understand that and then say, okay, we're living with this. How do we continue to move forward? Jason is a very routine person. He's a very diligent and dedicated person. If you if he finds something that he thinks that it's to help him on his journey, then he's going to do it. His diet is one of those things. It's part of control emotionally. And it's also about hopefully giving him the best chance. So cutting out bread, meat, dairy, egg yolk, keeping up and consistent with the gym routine.
Natalie: Especially through being on ADT is really, really hard, but he does it because he knows it's going to give him a better chance at the end of the day for recovery and symptoms and hopefully to be cancer free for the rest of his life and be with me and annoyingly dragging him to every social event that he doesn't want to go to.
Eunice: I think that both of what you have both shared is really powerful. Natalie, I was listening to what you're saying about, when someone is diagnosed with cancer, a lot of times people don't know what they should do. So saying that, invite me to a basketball game, invite me to the things that we typically do, don't be afraid because Jason is, you think Jason is sick. He can't do this thing. That type of time is so valuable. That giving people time for people who are maybe remote who aren't able to be there in person, are there things that you all would maybe recommend? Because even for me, I struggle with, I hope you're well and that you don't feel like you're doing enough. You want to do something but you don't know what to do. So you've given really good insights and some pearls, but just curious if there's anything else that remote people have done that have been impactful?
Jason: Just checking in. It's my responsibility as a patient, at least I feel that it is, to be, I mentioned this earlier, is to be very transparent about what's happening so that they can, you try to help them understand. You don't need to give them the level of detail that maybe another prostate cancer patient would want or need. But, the first thing I did was start encouraging, because I have a lot of friends my age, obviously. And I would start encouraging them, get your PSHA. Seriously, I had no, I had no symptoms. This is the last thing on my mind. Get your PSHA if you're 40 and above.
Jason: And, beyond that, just try to explain what's happening, what the side effects of your treatment are and so that they can feel like they can check in if they're genuinely interested in your well-being. Then if they're genuinely interested in your well-being, give them something tangible so that they understand maybe what you're going through. So that they feel maybe a little more invested rather than, hey, you've got cancer. I had a good buddy. I don't have any brothers or sisters, but back in Virginia, there was a tight group of friends that I had all through high school and even beyond that. And a lot of those end up moving to Greensboro, North Carolina together. And I lost one of those friends to a type of leukemia years ago. And I remember vividly...
Jason: I didn't, I didn't know what to do. I didn't know what to say. And we largely lost contact. He was very reclusive. He withdrew. And whenever anyone would try to contact him, it's like, I don't know how he's doing. I've tried to get messages or whatever. So it made it really difficult to be able to reach out or understand what he might need. And I felt like at that time, what he needed was brotherhood and camaraderie and my buddies who I am close to who are remote, some of them I hadn't talked to in a while because we're in New York and life happens and you lose touch with people sometimes. But I have people in other states, friends in other states that reach out and it was important to arm them with the tools to be able to understand, okay, what is actually happening and, take charge of their own health, A, but B, be able to call me and say, how is the, how's the ADT going? So that they understand what this is actually doing to you.
Eunice: And it probably empowers them as well because maybe they hadn't even heard of what ADT is. And now they've looked up ADT and they can say, I know Jason is on ADT. And I can ask you, how is ADT going? How is radiation therapy going? How is surgery? We've talked about a lot about the medical stuff. You have both given such wonderful advice. If you had to summarize any advice that you would give to our listeners, is there any advice from both of you I'd love to hear? That you would give to someone who is going through a cancer diagnosis, someone who is supporting a partner, a family member, a friend that you would give?
Final Advice: Perspectives from a Patient and a Partner
Natalie: In terms of advice that I would probably share, I think it is important to, of course, be there for your partner, show up for your partner, however that means. Jason and I have been together a long time. We know each other so well. We're both very independent people. We know how we process things, giving Jason space to process and do this research, even though it gives me exceptional anxiety. And to do that, I know that's what he needs and to go through and just to have the open conversation about it, giving him the space to talk about that research was I think important to him and for me to understand about what his thought process was. I think it is important to always remember it is everyone's individual life and decision and there were of course moments where I think I probably was very passion-filled and what I thought was going to be the best way forward especially because of a history with my dad and luckily ultimately jason made the decision and to have surgery and made me feel a lot better about it.
Natalie: Having the open conversations, I think, is just critical. Just to be there for your partner, be there for your friend, family member. Don't let them go inwards, even if that's their general nature. Try to sit with them and say, I'm here. There's no judgment. I'm just going to listen. But I think it's important just to talk about it. And then on the flip side, of course, to find moments of self-care, I think that's equally important. Finding your outlet. Where do you get that?
Natalie: Again, for me, it's morning walks on Saturday with one of my best girlfriends. Friends, we walk for sometimes six miles while Jason's catching up on sleep so she can listen to what's been going on and hear about how I'm feeling. And that really matters a lot to me. Voice notes to my sister, back and forth, sending memes. Those are all many ways of coping and self-care for myself to be having more of a full cup to show up for him and know that I can give a hundred percent. And it's okay if you both have days that you don't, that you both are showing up at 50% or you're both at 30%. Vegging in front of TV, whatever that might be. But we don't always agree on, I think, a path that's always the best path, but I think it's really important to support a partner and the decisions that they make about their treatment. It's their life. It's their body and their autonomy.
Natalie: Jason, like I said, is really strict with his diet. I would love it if occasionally he would splurge a little and have a red meat on twice a year or whatever. But he's a dedicated guy. He's very diligent. And that's his choice not to do that. But he still supports us going out to these restaurants and they accommodate his dietary restriction. Then we yourself a great time. It's the give and take on that. And I think just being, if you can carve out the time, if you can make the space to go to appointments, take your own notes, show up, you're obviously entitled to your own feelings and your own opinions at the end of the day. You just have to be there to support. It's just, that's what you got to do. It's not your life, it's theirs. And you just got to be there for them. You show up with love and that's what you can do.
Jason: So on the patient side of that, I think the utmost importance is to allow them to be there and to allow them to show up for you. I historically have been very independent. And sometimes it's difficult for me to allow that support system. But I'm learning.
Jason: And you have to have, you have to resolve sometimes that you can't do it alone. And this is certainly something that I could absolutely not face alone. Or I guess if I was forced to, maybe I had to. But with, having Natalie by my side to face this is really a godsend. So I can't overstate that enough. And I went a bit extreme with it, having my crazy discipline with diet and with exercise and with research and whatnot. All these things I think have helped me tremendously on this journey, but that's me. Everyone approaches this in a different way. I can give that advice, but that advice worked for me. And to touch on the self-care point, yeah, I also, sure, I'm in the gym, but that's a huge emotional and mental positive for me. Yes, being in the gym and just the physical nature of working out, it's been shown to be the best thing you can do for prostate cancer and especially to mitigate the side effects of ADT. I think eight weeks after surgery, I was squatting again.
Jason: No problem, because I'd had such a history with it leading up to it that I just snapped right back and is getting hard with ADT. It gets harder and harder every time I go in. I drop reps. I drop weight. But, I'm still in there and I'm still doing it. And it's that's part of the fight. And it helps me mentally and emotionally as well as physically also. And then I try to keep up my little side hobbies. Coffee is mostly a commodity for most people. For me, it's a hobby and I'm making espresso and I'm weighing beans and I'm weighing the shot and I'm just totally overboard with it. So keeping things like that, that are my little Zen part of the day, keeping those routines. And knowing that, as simple as it may be, it's an important, normalizing thing in my life right now, which is very welcome because things are far from normal, especially right now with the ADT and the radiation going concurrently.
Jason: Give yourself some grace. Look forward to whatever your path may be, but also look up. The sky is going to be a lot more blue than you remember and the leaves of the trees are going to be a lot greener and the birds are going to sing a lot sweeter. Trust me when you get the diagnosis and notice those things and look in your partner's eyes and relish the fact that you have them and that you're still here and hopefully not going anywhere in the time soon, enjoy life.
Eunice: I'm speechless at both of you and the advice that you have both shared, both from the patient perspective and the perspective of the loved one. And so I think this is both really going to resonate. Whenever I do these episodes, I feel like I gain more empathy and really more understanding. And it's the same here. So thank you both for opening up. I know this is a long episode, but Jason, you said, you talked about the future, about you have this diagnosis and you use a phrase that I can't fully remember how to rephrase that, but thinking about, the sun is going to shine and what the future is going to be like, what are you both looking forward to the most? It could be a week from now, two weeks from now. I know you talked about the coffee. Oh, a year from now, maybe even after you're done with treatment, are there things that you both are looking forward to that, that are you excited about in your lives?
Looking to the Future: Life Beyond a Cancer Diagnosis
Natalie: For me, I think the thing that I'm a little excited about is to continue to travel together and experience things together. The things that we love like jazz and dancing, good food, good wine, all of the kind of just dreams and aspirations that we always talk about still and want to do. That's something that I really hold on to. And I look forward to and I plan a lot on those trips to make those memories. I take tons and tons and tons of photos. I actually tried to pull back on my photos to live a little bit more in the moment. I actually started doing scrapbooks the first year Jason and I were together. And so every year we have a scrapbook and I'm a little behind. I'm still that of two, even nine and 10. But, I think that that's something that I really hold on to dearly is the knowledge of to make more memories together, big or small, big trips or just movie nights in the backyard, trying to think about, the weekend's going to look really nice, we should do something together, we should.
Natalie: And then thinking about, oh, yeah, well, we're planning to go visit my mom and family in Budapest, Hungary, in October. And, oh, well, what are we going to do at the end of the year? There's constantly something to look forward to. And even earlier in the diagnosis, we had tickets to Harry Connick Jr.
Natalie: And that's something we really look forward to, for months, knowing that there's something to hold on to and both do together, I think is really important.
Jason: I'm going to echo a lot of that. It's just mainly showing up for Natalie and doing the things that we love to do, planning things in the future. We love to pretend we're in New York and we can do this. We love to pretend it's 1930. And, she puts on a beautiful clock kill gown and I put on the tux. And this is not a one time thing. We do this all the time. We are well known for doing this. If I go into Manhattan, well, outside of getting treatment, I almost never wear anything but a tuxedo just because we can do it. And it's a way to elevate the evening and our experience. And I think we, going forward, just making sure that we continue to do that and have those things look forward to. And not letting this diagnosis and what has to come along with it just define us. Because I just don't, I don't feel like it does. was so much larger than this.
Eunice: I think that is the perfect phrase, I feel like, to end this because truly I don't think that cancer defines who dynamic individuals people are and doesn't define you. And I completely agree that, cancer patients are so, so, so much more than they diagnose this and just dynamic human beings. So thank you both for joining me on this podcast. And I really thank you. Really thank you both.
Natalie: Thank you so much.
Eunice: Although this visit has ended, I hope this story stays with you and you can share it with someone who might need it. Until next time, take care.
