“You have two choices: be in the ground, or live as much of this life as you can”
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“Humbling is a good word to describe all of this. When I first started chemo, my middle son was graduating from high school. It was a hot June day. These are the vivid parts that you remember. My plan was to go to his graduation. But that day, I was really out of it. My wife said, are you ready to go? And I'm sitting there on the recliner in a pair of shorts. I don't think I even had a shirt on, which was not normal for me. But I said, yeah, I'm ready to go. Because that “go go go” mentality was just so innate for me. But I clearly wasn’t ready to go. And my wife’s just looking at me, because I wasn’t dressed. I was so screwed up in my head and my body just wasn't moving. She finally said, “Okay, I’ll be back.”
It still bothers me that I didn’t make it to his graduation. It just feels so wrong. But it never would have happened. My wife would have been carrying me out of there in the blasting heat of that football stadium that year. The condition I was in…it would have been a disaster.
Before my diagnosis, I used to approach life in a very straight line
I naively thought I had control over everything in my life. I’d tell my kids, this is the path you take, and if you do all these things correctly, this is what you’ll get. But with cancer, you don’t control your health. And eventually you realize you don't control anything at all. You certainly don't control your kids. They're individual people, right? So that’s been a humbling thing. You can influence things, but you can’t control them. And you may not always find the “why” behind certain things that happen. I mean, I've been genetically tested and from what the doctors currently know, there's no reason why I have prostate cancer. I don’t have any of the known prostate cancer markers. I still try to figure things out through my own research though, mostly for my two sons. I skim over a lot of data. Nothing can really change things for me at this point, but I can try to change it for them.
They said it would kill me. I thought, to hell with that.
I was 48 when it first started. My three kids were in high school and college but still young. I played sports my entire life, and I was still healthy and physically fit. I was cruising through life - at least the illusion of what I thought it was. But my diagnosis derailed that mindset completely.
It really all started with a gut feeling. I just had this feeling that something wasn’t right. So I asked my doctor to do a prostate exam. She said, you’re not 50 yet, so you don’t need to worry about having one. But I did the digital exam anyway, and that’s what set things in motion. Had I not proactively done that, I would have been gone a long time ago. I honestly don’t even want to think about that. But my point is, if you feel something is wrong, don't mess around. Get it checked out.
After my diagnosis, we started with surgery to remove my prostate, but after doing so, we found out the cancer had already progressed. The doctors knew that cancer cells were floating around inside of my body, but they couldn’t pinpoint where. They told me that I’d likely never get rid of it. They said it would kill me. I thought, to hell with that. From that point on, I was very aggressive in trying to find a way to kill the cancer before it killed me.
I started my first clinical trial within a few months after surgery. It was a combination of chemo, hormonal therapy, and radiation. We wanted to try to attack it as quickly as we could, not knowing where it was. I did that trial for about six months or so. My test results showed that the cancer was still there. It eventually landed in my spine. From there I did four more clinical trials. Unfortunately, each one of those trials had about a six month curve…where the cancer would consistently decline, but then at the bottom it’d turn and start rising again. So I’d end that trial and then start the next one.
It all finally led to a clinical trial where I didn’t get the experimental drug, but rather the standard of care, which was hormonal treatment. I’ve been on that treatment for the past 10 years. I didn’t want to do it at first. I kept putting it off. But at that point, it had been five years of playing around and nothing was working. So I thought okay, this cancer is aggressive, it’s time to pull the trigger and just do what they suggested from the beginning, which was the standard of care hormonal treatment. It’s really taken a toll on me physically, which is why I had avoided it to begin with. It changes you. I’m no longer the physically fit athlete I was. I’m beat up pretty badly. But you know, they originally gave me 3-5 years. That was my expected lifespan. And I’m 10 years past that now. So when it’s all said and done, the treatment gave me that.
You have to make a lot of tough choices when you have cancer
I've been married for 35 years. Any choices I’ve made or things I've done, we've talked about, but I made the decision. Because my belief is you are your only advocate. Your parents aren't your advocate. Your spouse isn't your advocate. Certainly we talk about things at home, but my wife doesn't go with me to treatment and appointments. She was there for my surgery, but hasn't been back in one of those facilities since. And that's just how we do it. Because it’s my choice.
Cancer really occupies everything in my life. But I've worked hard to not make it as much of a burden to my family. My kids aren't really aware of what goes on during the day-to-day. They know I have cancer, but I didn’t tell them it was stage four. I don’t want it to consume them like it does me. My perspective was that it's my issue and I will deal with it. I want them to live their life and keep moving forward, and whatever happens happens.
It’s helpful to consult with people who have been through it. Luckily for me, I have a cousin who's a pharmacist. So for every clinical trial, I’d show him the contract to get his opinion on the side-effects. Because when you’re reading it, you're like, what am I doing? So I’d send it to him and say, “How bad could this get?” And he’d be real with me, often saying it’s not worse than anything I’d already been through. So it gave me the consolation that I wasn’t crazy in agreeing to try things.
I come from a line of some pretty stubborn mules. It’s a generational thing. And a Philly thing.
When I meet with doctors, they’ll say “Okay, what can I do for you?” And I know they’re brilliant. But I always take a unique approach with a doctor consultation. I let them know, “I consider this a job interview for you. I'm looking for somebody to save my life. The question is, is it you?” And if I decide it isn’t them - for example if they agree with the way my treatment has been handled up until that point - we shake hands, I thank them for their time, and I leave.
It’s not that doctors talk down on you, but they’re going to try to tell you what to do, because they know more than you. It’s not malicious, but they have only their experiences and do not know who you are or your specific needs. And most people just aren’t equipped to break down a consultation with a doctor. But I have learned to bring them down to my level. To my level of speech and understanding. I can’t have a real conversation any other way. I set the tone from the get go. It’s not disrespectful of me, in my opinion. Because my life's on the line. I ask a lot of difficult questions to help me frame everything up in my head in a realistic way. So that I can figure out how to move forward.
As an example, in an early meeting with one of my doctors, while they were putting together a treatment plan for me, I said,” I want you to understand who you’re dealing with.” And he looked at me, seeming confused. Probably because doctors are typically used to quiet people. You know, our parents kind of just listened to the doctor and did what they said. But I made it clear that I would be more aggressive. I said, “If you told me right now that if you cut off my arm I’d be cured, then I’d do it in a heartbeat. My left arm of course, because I’m right-handed.” And the doctor just stared at me. I think he started to understand who he was dealing with. I come from a line of some pretty stubborn mules. It’s a generational thing. And a Philly thing. I'm of German Irish descent, which are two of the most stubborn cultures.
I broke down the guardrails with one of my doctors at the Cancer Institute. It became just two guys talking. I’ll never forget a time where I had found myself in a complete panic. I won’t tell you the gory details, but I thought, “This is it. Who do I call?” I hadn’t seen this doctor in a year, but I had his number so I called him anyway. And he picked up. It was obvious he was in the middle of something, yet he still answered. He said of course I remember you. I was like oh, that could be bad, ha! But then I thought maybe it’s good. My heart was racing. He talked me off the ledge, told me what to do. So I’m just thankful that I’ve chosen phenomenal people.
It made me an old man in a six-month timeframe
It's been a while since the beginning of all of this, and I conveniently start to forget things. But when I think back, it amazes me how accurate my doctors were from the get go. They told me I’d be immunocompromised and to stop traveling…that things would get pretty debilitating as the chemo poison was building up in my system. I work in sales so I kept traveling, and they kept yelling at me. I was trying to resume my life as normal. And they’re like, why aren’t you listening to us? I said, while I can, I'm going to go out and do things, and then when it really hits me, I’ll slow down.
Sure enough, when I was on a flight to Seattle, I didn’t have the strength to get my overhead luggage. Some young guy came up to me asking if I wanted help. At first I looked at him like, who are you talking to? And then it really dawned on me. I’m 6’3. I used to lift a lot of weights and was a strong person. But I didn’t even have the strength to get that thing down. So I said yeah, help would be great.
Soon after that flight, the doctors kept yelling at me until finally I realized okay, this is really getting bad. Sure, there were periods where I worked all the way through it. I worked from my home office so I could get away with it. But the second day after my dose, it all really hit. I was so spaced out trying to work. I don’t think I would have known my phone number if someone asked me.
The hormonal treatment ages you rapidly. It made me an old man in a six month timeframe. Your joints, ligaments…it affects it all. We used to do a prostate cancer fundraiser walk every Father’s Day. It was my thing that I gathered everyone for. Our entire extended family would meet at our house to drive down and go. But once I started this treatment, I could no longer do it. And I just had to sit there. I couldn’t walk. My legs just weren’t working. Because of the drugs.
I’ll never forget one moment in particular during treatment. I was halfway through chemo, sitting in the chair all hooked up to my one bag of poison. And I'm looking to my left and see a woman who was maybe 80 years old, hooked up to two bags of poison. Right then I thought to myself, “Here's this 80-year-old woman taking two bags of crap. I'm taking one and I'm feeling bad about myself. Stop whining. Let’s go.” So every time I start to get low, I look at the people around me. Or I look at the news and see the awful things happening in different parts of the world. And I think, I really don’t have any problems at all. Because I got an extra 10 years.
They all suffer with me. Because they’re living it in their own way, too.
My spouse, and my whole family, have been my support system. But like I shared earlier…the support aspect is difficult for me. Because the path I’ve taken and mindset I’ve had is that I am my only advocate. My wife and I obviously talk about things and what could happen. I let her share what’s on her mind. Because everything you go through inevitably involves other people in your life. I kind of don’t look around me…I’m just trying to save myself. But they all suffer with me. Because they’re living it in their own way, too.
When my cancer metastasized in my spine, I said to my wife, “Look, you don't need to stay for this because this is not going to end well.” She was angry at that, and started to cry. She hit me and was like, “Remember that time we got married and the vows were for better for worse?" I said, "I understand that, but I'm telling you, that if you want to go because you don't want to go through this, I won't hold any grudges against you." For as misguided as I may be, I thought it was the right thing to say. But she hit me a second time. So I guess it wasn't the right thing to do.
I’ve lost two sisters to cancer
One of them was going to this little hospital for treatment. I got into an argument with her about it. I understood it was convenient for her, but I said “Eileen, listen. Look at it this way. If you own a $400,000 Maserati and the engine was making a noise, do you go to Bob's corner gas station to have it looked at? No. You go back to the Maserati dealer who is the expert in those cars, and you have them do the work for you.”
There are plenty of good hospitals, but most of them are fixing a broken arm or a bad cut. Similar to body shops or gas stations that can change a tire, change your brakes, or do an oil change. But they are not equipped for cancer. They just don't have that skill set. Because cancer is a completely different animal. You need to find the experts because they are the ones that get into the transmission and the engine and they figure out what’s really going on. There's no other option in my opinion. I do recognize the barriers to care, though. We’re lucky being on the East Coast. It’s one of the predominant areas for cancer treatment. But if you have no way to get to those treatment centers, obviously a different conversation needs to be had. But if you are fortunate enough to live near top treatment centers, that’s where you need to go…the places that are doing the experimental stuff. Because those are the places finding the cures.
I’ve been in different trials, and in different facilities. I started at Fox Chase while we're in the beginning, and then I went and spoke to virtually everybody around here. University of Pennsylvania, Johns Hopkins, Fox Chase, those are the top three within an easy drive. Columbia and Sloan Kettering are the other two. Because if you’re gonna have somebody put a roof on your house, you get three quotes, right? Fox Chase is the closest and easiest for me, which made it easier for my family too.
It’s called medical practice for a reason, right?
My doctor recently asked me, “Do you know how much we’ve learned in the past 10 years?” It’s astonishing. And it’s because of people like me who have contributed through clinical trials. When I was first diagnosed, I didn’t have any of the genetic markers. But when the end comes for me, they’ll likely be able to test me and identify that I have the markers that they have become aware of…something they didn’t know five or 10 years ago. They’re learning every day. That’s why clinical trials exist…to learn from us. At least that’s my perspective.
It’s called medical “practice” for a reason, right? Because they’re practicing. It's no different than when you go to the car dealer to get your car fixed. You're the 55th person to have a set of brakes put on today, and I got to knock it out and get you out of there fast and get the next person in. Because they learn as they go and get better. And it’s a business, too, at the end of the day. So it's really up to you to be your own advocate to make sure that you get that few minutes of their brain focused on you. That's your job, as I see it anyway.
I don’t want somebody else to go through what I did
If telling my story can prevent somebody from being in the void of space, where they’re unable to breathe because they don't know where to go…then that’s what I’m going to do. I believe I’ve been given an extra 10 years because of clinical trials. I consider it my duty to give back to the next unfortunate souls that go through this after me.
I volunteer for a direct-to-patient program at my treatment facility. They match you up with people who are under similar circumstances. So you can share your story and consult with someone who has had a similar diagnosis, and they can provide guidance and walk you through the steps to take. I've spoken to quite a few people. And they’ll say things like, “How did you make that choice? Why would you do that? I don't want to do that.” And I'm like, yeah, I totally understand. It's an individual choice that you have to make.
When I talk to other people in similar situations - particularly folks whose minds are on the dark side of things - they often say they don’t think they can get through a clinical trial, or any of the treatment at all. They don’t want to be poked and prodded anymore. They don’t want the scans or all the nuclear stuff. And my response is, “What are the consequences of not doing it? What are the consequences of doing it?” Because that's what you have to look at in order to stay here. To stay alive. Honestly, sometimes I’d get angry. It’s tempered a little bit over time, when I realized first-hand just how exhausting all of the blood draws are. But I’d do it a thousand times over. I know my approach isn’t for everyone. It’s abrupt for many people. So I’m trying to be careful and intentional when I share my experience.
It’s important to establish goals and objectives
Clinical trials are a really strong option to consider, especially if your doctors are telling you there’s not much they can do for you. But the path you take depends on your situation and your diagnosis. There are questions you have to consider. How bad is your disease? What is the path it is predicted to take? A trial is an experiment, and there are consequences to experiments. It’s important to establish goals and objectives…what you’re looking to get out of treatment.
For clinical trials specifically, a lot of the upfront work can be done right on the computer. But you need resources on where to start. I remember at the beginning, people would preach “Do your homework!” And I’m like, what does that even mean? Homework about what? It took me a while to understand what that meant and what I needed to do. Which is why I’m here with you today…I don’t want somebody else to go through what I did. Because if you’ve never been sick, it’s hard to know where to go. It’s a daunting thing. But if you have Internet access, you can start Googling clinical trials for whatever your disease is. That’s a good start. But, the Internet can also be a dangerous place. There’s some really screwed up stuff on there. I mean I saw one guy - a medical doctor - posting videos about how prostate cancer is fake. And if you go down that rabbit hole of content, you can end up dead pretty fast. So just be mindful of that.
Through my own research I eventually found the National Cancer Institute, which is the federal government's main place that documents and houses all the clinical trials that are available for cancer of any sort. From there, you have to dig through to get to prostate cancer. Most clinical trials are free, other than transportation, which I know is a barrier. But if you have a way to get there, the medicines are generally free. There’s a contract you sign to say that you understand the potential consequences of your participation. They spell it all out in the contract. Because there’s a lot that goes into it. You’re better off going through this process with a couple of people who understand the landscape. It’s a ton of information and can be overwhelming.
I try to redirect my brain as much as I can, back to the things that make me happy
The trial I’ve been on has officially ended. I’m going to continue taking what I’ve been taking, because my numbers have outperformed everybody else in the study. I asked my doctor, “I'm making plans for the rest of my life. Should I continue making plans or should I start wrapping stuff up?” He told me to keep making plans. But ultimately, nobody knows what tomorrow holds. You could walk out the front door and get hit by a bus. Anything can happen. So I don't look too far down the road anymore. I still have the same issues that everyone else has, but now I just have a better perspective on it all. I try to redirect my brain as much as I can, back to the things that make me happy. It’s not always easy, but I try to do it on a regular basis.
Family members have told me before that I’m their hero. And I'm like, what? No I'm not. A hero is somebody like a fireman. I used to be one. Scenarios where you jump out of a window and grab the baby on the way out…that’s heroic. But this? This is purely survival. It’s purely selfish. I got too much stuff I wanna do…too many things I want to see.
I live in the moment more than I ever did before
We’re all flawed. We all have things to work through in our relationships, our families, our careers. But it all comes back to this for me: you have two choices: be in the ground or live as much of this life as you can. From the beginning of this cancer journey, I knew which one I was choosing.
There's been a lot of changes. I still have moments where certain things enter back into my head, but I try not to dwell. I try to not let my mind wander to the dark side. I don’t look too forward. Because from my perspective, I've been given this extra time that I wasn't supposed to have. So I'm gonna soak up every moment of it that I can.
I live in the moment more than I ever did before. It’s a conscious choice. I wasn't supposed to see my oldest son get married. And now I have a granddaughter. None of that was supposed to happen for me. Of course there are consequences of the path I’ve taken, but that’s life. You have to make choices. And for me, staying alive was more important than everything else. I basically threw everything else out to stay alive. And I don't regret it at all. Ultimately, I’m trying to find a cure. Because I’m stubborn. Doctors tell me I won’t find one. Even if I can’t, I’ll still have gained an extra 10 or 15 years. Not a bad second place. I wouldn’t have that without clinical trials. That extra 10 years of life is my evidence.”
“Humbling is a good word to describe all of this. When I first started chemo, my middle son was graduating from high school. It was a hot June day. These are the vivid parts that you remember. My plan was to go to his graduation. But that day, I was really out of it. My wife said, are you ready to go? And I'm sitting there on the recliner in a pair of shorts. I don't think I even had a shirt on, which was not normal for me. But I said, yeah, I'm ready to go. Because that “go go go” mentality was just so innate for me. But I clearly wasn’t ready to go. And my wife’s just looking at me, because I wasn’t dressed. I was so screwed up in my head and my body just wasn't moving. She finally said, “Okay, I’ll be back.”
It still bothers me that I didn’t make it to his graduation. It just feels so wrong. But it never would have happened. My wife would have been carrying me out of there in the blasting heat of that football stadium that year. The condition I was in…it would have been a disaster.
Before my diagnosis, I used to approach life in a very straight line
I naively thought I had control over everything in my life. I’d tell my kids, this is the path you take, and if you do all these things correctly, this is what you’ll get. But with cancer, you don’t control your health. And eventually you realize you don't control anything at all. You certainly don't control your kids. They're individual people, right? So that’s been a humbling thing. You can influence things, but you can’t control them. And you may not always find the “why” behind certain things that happen. I mean, I've been genetically tested and from what the doctors currently know, there's no reason why I have prostate cancer. I don’t have any of the known prostate cancer markers. I still try to figure things out through my own research though, mostly for my two sons. I skim over a lot of data. Nothing can really change things for me at this point, but I can try to change it for them.
They said it would kill me. I thought, to hell with that.
I was 48 when it first started. My three kids were in high school and college but still young. I played sports my entire life, and I was still healthy and physically fit. I was cruising through life - at least the illusion of what I thought it was. But my diagnosis derailed that mindset completely.
It really all started with a gut feeling. I just had this feeling that something wasn’t right. So I asked my doctor to do a prostate exam. She said, you’re not 50 yet, so you don’t need to worry about having one. But I did the digital exam anyway, and that’s what set things in motion. Had I not proactively done that, I would have been gone a long time ago. I honestly don’t even want to think about that. But my point is, if you feel something is wrong, don't mess around. Get it checked out.
After my diagnosis, we started with surgery to remove my prostate, but after doing so, we found out the cancer had already progressed. The doctors knew that cancer cells were floating around inside of my body, but they couldn’t pinpoint where. They told me that I’d likely never get rid of it. They said it would kill me. I thought, to hell with that. From that point on, I was very aggressive in trying to find a way to kill the cancer before it killed me.
I started my first clinical trial within a few months after surgery. It was a combination of chemo, hormonal therapy, and radiation. We wanted to try to attack it as quickly as we could, not knowing where it was. I did that trial for about six months or so. My test results showed that the cancer was still there. It eventually landed in my spine. From there I did four more clinical trials. Unfortunately, each one of those trials had about a six month curve…where the cancer would consistently decline, but then at the bottom it’d turn and start rising again. So I’d end that trial and then start the next one.
It all finally led to a clinical trial where I didn’t get the experimental drug, but rather the standard of care, which was hormonal treatment. I’ve been on that treatment for the past 10 years. I didn’t want to do it at first. I kept putting it off. But at that point, it had been five years of playing around and nothing was working. So I thought okay, this cancer is aggressive, it’s time to pull the trigger and just do what they suggested from the beginning, which was the standard of care hormonal treatment. It’s really taken a toll on me physically, which is why I had avoided it to begin with. It changes you. I’m no longer the physically fit athlete I was. I’m beat up pretty badly. But you know, they originally gave me 3-5 years. That was my expected lifespan. And I’m 10 years past that now. So when it’s all said and done, the treatment gave me that.
You have to make a lot of tough choices when you have cancer
I've been married for 35 years. Any choices I’ve made or things I've done, we've talked about, but I made the decision. Because my belief is you are your only advocate. Your parents aren't your advocate. Your spouse isn't your advocate. Certainly we talk about things at home, but my wife doesn't go with me to treatment and appointments. She was there for my surgery, but hasn't been back in one of those facilities since. And that's just how we do it. Because it’s my choice.
Cancer really occupies everything in my life. But I've worked hard to not make it as much of a burden to my family. My kids aren't really aware of what goes on during the day-to-day. They know I have cancer, but I didn’t tell them it was stage four. I don’t want it to consume them like it does me. My perspective was that it's my issue and I will deal with it. I want them to live their life and keep moving forward, and whatever happens happens.
It’s helpful to consult with people who have been through it. Luckily for me, I have a cousin who's a pharmacist. So for every clinical trial, I’d show him the contract to get his opinion on the side-effects. Because when you’re reading it, you're like, what am I doing? So I’d send it to him and say, “How bad could this get?” And he’d be real with me, often saying it’s not worse than anything I’d already been through. So it gave me the consolation that I wasn’t crazy in agreeing to try things.
I come from a line of some pretty stubborn mules. It’s a generational thing. And a Philly thing.
When I meet with doctors, they’ll say “Okay, what can I do for you?” And I know they’re brilliant. But I always take a unique approach with a doctor consultation. I let them know, “I consider this a job interview for you. I'm looking for somebody to save my life. The question is, is it you?” And if I decide it isn’t them - for example if they agree with the way my treatment has been handled up until that point - we shake hands, I thank them for their time, and I leave.
It’s not that doctors talk down on you, but they’re going to try to tell you what to do, because they know more than you. It’s not malicious, but they have only their experiences and do not know who you are or your specific needs. And most people just aren’t equipped to break down a consultation with a doctor. But I have learned to bring them down to my level. To my level of speech and understanding. I can’t have a real conversation any other way. I set the tone from the get go. It’s not disrespectful of me, in my opinion. Because my life's on the line. I ask a lot of difficult questions to help me frame everything up in my head in a realistic way. So that I can figure out how to move forward.
As an example, in an early meeting with one of my doctors, while they were putting together a treatment plan for me, I said,” I want you to understand who you’re dealing with.” And he looked at me, seeming confused. Probably because doctors are typically used to quiet people. You know, our parents kind of just listened to the doctor and did what they said. But I made it clear that I would be more aggressive. I said, “If you told me right now that if you cut off my arm I’d be cured, then I’d do it in a heartbeat. My left arm of course, because I’m right-handed.” And the doctor just stared at me. I think he started to understand who he was dealing with. I come from a line of some pretty stubborn mules. It’s a generational thing. And a Philly thing. I'm of German Irish descent, which are two of the most stubborn cultures.
I broke down the guardrails with one of my doctors at the Cancer Institute. It became just two guys talking. I’ll never forget a time where I had found myself in a complete panic. I won’t tell you the gory details, but I thought, “This is it. Who do I call?” I hadn’t seen this doctor in a year, but I had his number so I called him anyway. And he picked up. It was obvious he was in the middle of something, yet he still answered. He said of course I remember you. I was like oh, that could be bad, ha! But then I thought maybe it’s good. My heart was racing. He talked me off the ledge, told me what to do. So I’m just thankful that I’ve chosen phenomenal people.
It made me an old man in a six-month timeframe
It's been a while since the beginning of all of this, and I conveniently start to forget things. But when I think back, it amazes me how accurate my doctors were from the get go. They told me I’d be immunocompromised and to stop traveling…that things would get pretty debilitating as the chemo poison was building up in my system. I work in sales so I kept traveling, and they kept yelling at me. I was trying to resume my life as normal. And they’re like, why aren’t you listening to us? I said, while I can, I'm going to go out and do things, and then when it really hits me, I’ll slow down.
Sure enough, when I was on a flight to Seattle, I didn’t have the strength to get my overhead luggage. Some young guy came up to me asking if I wanted help. At first I looked at him like, who are you talking to? And then it really dawned on me. I’m 6’3. I used to lift a lot of weights and was a strong person. But I didn’t even have the strength to get that thing down. So I said yeah, help would be great.
Soon after that flight, the doctors kept yelling at me until finally I realized okay, this is really getting bad. Sure, there were periods where I worked all the way through it. I worked from my home office so I could get away with it. But the second day after my dose, it all really hit. I was so spaced out trying to work. I don’t think I would have known my phone number if someone asked me.
The hormonal treatment ages you rapidly. It made me an old man in a six month timeframe. Your joints, ligaments…it affects it all. We used to do a prostate cancer fundraiser walk every Father’s Day. It was my thing that I gathered everyone for. Our entire extended family would meet at our house to drive down and go. But once I started this treatment, I could no longer do it. And I just had to sit there. I couldn’t walk. My legs just weren’t working. Because of the drugs.
I’ll never forget one moment in particular during treatment. I was halfway through chemo, sitting in the chair all hooked up to my one bag of poison. And I'm looking to my left and see a woman who was maybe 80 years old, hooked up to two bags of poison. Right then I thought to myself, “Here's this 80-year-old woman taking two bags of crap. I'm taking one and I'm feeling bad about myself. Stop whining. Let’s go.” So every time I start to get low, I look at the people around me. Or I look at the news and see the awful things happening in different parts of the world. And I think, I really don’t have any problems at all. Because I got an extra 10 years.
They all suffer with me. Because they’re living it in their own way, too.
My spouse, and my whole family, have been my support system. But like I shared earlier…the support aspect is difficult for me. Because the path I’ve taken and mindset I’ve had is that I am my only advocate. My wife and I obviously talk about things and what could happen. I let her share what’s on her mind. Because everything you go through inevitably involves other people in your life. I kind of don’t look around me…I’m just trying to save myself. But they all suffer with me. Because they’re living it in their own way, too.
When my cancer metastasized in my spine, I said to my wife, “Look, you don't need to stay for this because this is not going to end well.” She was angry at that, and started to cry. She hit me and was like, “Remember that time we got married and the vows were for better for worse?" I said, "I understand that, but I'm telling you, that if you want to go because you don't want to go through this, I won't hold any grudges against you." For as misguided as I may be, I thought it was the right thing to say. But she hit me a second time. So I guess it wasn't the right thing to do.
I’ve lost two sisters to cancer
One of them was going to this little hospital for treatment. I got into an argument with her about it. I understood it was convenient for her, but I said “Eileen, listen. Look at it this way. If you own a $400,000 Maserati and the engine was making a noise, do you go to Bob's corner gas station to have it looked at? No. You go back to the Maserati dealer who is the expert in those cars, and you have them do the work for you.”
There are plenty of good hospitals, but most of them are fixing a broken arm or a bad cut. Similar to body shops or gas stations that can change a tire, change your brakes, or do an oil change. But they are not equipped for cancer. They just don't have that skill set. Because cancer is a completely different animal. You need to find the experts because they are the ones that get into the transmission and the engine and they figure out what’s really going on. There's no other option in my opinion. I do recognize the barriers to care, though. We’re lucky being on the East Coast. It’s one of the predominant areas for cancer treatment. But if you have no way to get to those treatment centers, obviously a different conversation needs to be had. But if you are fortunate enough to live near top treatment centers, that’s where you need to go…the places that are doing the experimental stuff. Because those are the places finding the cures.
I’ve been in different trials, and in different facilities. I started at Fox Chase while we're in the beginning, and then I went and spoke to virtually everybody around here. University of Pennsylvania, Johns Hopkins, Fox Chase, those are the top three within an easy drive. Columbia and Sloan Kettering are the other two. Because if you’re gonna have somebody put a roof on your house, you get three quotes, right? Fox Chase is the closest and easiest for me, which made it easier for my family too.
It’s called medical practice for a reason, right?
My doctor recently asked me, “Do you know how much we’ve learned in the past 10 years?” It’s astonishing. And it’s because of people like me who have contributed through clinical trials. When I was first diagnosed, I didn’t have any of the genetic markers. But when the end comes for me, they’ll likely be able to test me and identify that I have the markers that they have become aware of…something they didn’t know five or 10 years ago. They’re learning every day. That’s why clinical trials exist…to learn from us. At least that’s my perspective.
It’s called medical “practice” for a reason, right? Because they’re practicing. It's no different than when you go to the car dealer to get your car fixed. You're the 55th person to have a set of brakes put on today, and I got to knock it out and get you out of there fast and get the next person in. Because they learn as they go and get better. And it’s a business, too, at the end of the day. So it's really up to you to be your own advocate to make sure that you get that few minutes of their brain focused on you. That's your job, as I see it anyway.
I don’t want somebody else to go through what I did
If telling my story can prevent somebody from being in the void of space, where they’re unable to breathe because they don't know where to go…then that’s what I’m going to do. I believe I’ve been given an extra 10 years because of clinical trials. I consider it my duty to give back to the next unfortunate souls that go through this after me.
I volunteer for a direct-to-patient program at my treatment facility. They match you up with people who are under similar circumstances. So you can share your story and consult with someone who has had a similar diagnosis, and they can provide guidance and walk you through the steps to take. I've spoken to quite a few people. And they’ll say things like, “How did you make that choice? Why would you do that? I don't want to do that.” And I'm like, yeah, I totally understand. It's an individual choice that you have to make.
When I talk to other people in similar situations - particularly folks whose minds are on the dark side of things - they often say they don’t think they can get through a clinical trial, or any of the treatment at all. They don’t want to be poked and prodded anymore. They don’t want the scans or all the nuclear stuff. And my response is, “What are the consequences of not doing it? What are the consequences of doing it?” Because that's what you have to look at in order to stay here. To stay alive. Honestly, sometimes I’d get angry. It’s tempered a little bit over time, when I realized first-hand just how exhausting all of the blood draws are. But I’d do it a thousand times over. I know my approach isn’t for everyone. It’s abrupt for many people. So I’m trying to be careful and intentional when I share my experience.
It’s important to establish goals and objectives
Clinical trials are a really strong option to consider, especially if your doctors are telling you there’s not much they can do for you. But the path you take depends on your situation and your diagnosis. There are questions you have to consider. How bad is your disease? What is the path it is predicted to take? A trial is an experiment, and there are consequences to experiments. It’s important to establish goals and objectives…what you’re looking to get out of treatment.
For clinical trials specifically, a lot of the upfront work can be done right on the computer. But you need resources on where to start. I remember at the beginning, people would preach “Do your homework!” And I’m like, what does that even mean? Homework about what? It took me a while to understand what that meant and what I needed to do. Which is why I’m here with you today…I don’t want somebody else to go through what I did. Because if you’ve never been sick, it’s hard to know where to go. It’s a daunting thing. But if you have Internet access, you can start Googling clinical trials for whatever your disease is. That’s a good start. But, the Internet can also be a dangerous place. There’s some really screwed up stuff on there. I mean I saw one guy - a medical doctor - posting videos about how prostate cancer is fake. And if you go down that rabbit hole of content, you can end up dead pretty fast. So just be mindful of that.
Through my own research I eventually found the National Cancer Institute, which is the federal government's main place that documents and houses all the clinical trials that are available for cancer of any sort. From there, you have to dig through to get to prostate cancer. Most clinical trials are free, other than transportation, which I know is a barrier. But if you have a way to get there, the medicines are generally free. There’s a contract you sign to say that you understand the potential consequences of your participation. They spell it all out in the contract. Because there’s a lot that goes into it. You’re better off going through this process with a couple of people who understand the landscape. It’s a ton of information and can be overwhelming.
I try to redirect my brain as much as I can, back to the things that make me happy
The trial I’ve been on has officially ended. I’m going to continue taking what I’ve been taking, because my numbers have outperformed everybody else in the study. I asked my doctor, “I'm making plans for the rest of my life. Should I continue making plans or should I start wrapping stuff up?” He told me to keep making plans. But ultimately, nobody knows what tomorrow holds. You could walk out the front door and get hit by a bus. Anything can happen. So I don't look too far down the road anymore. I still have the same issues that everyone else has, but now I just have a better perspective on it all. I try to redirect my brain as much as I can, back to the things that make me happy. It’s not always easy, but I try to do it on a regular basis.
Family members have told me before that I’m their hero. And I'm like, what? No I'm not. A hero is somebody like a fireman. I used to be one. Scenarios where you jump out of a window and grab the baby on the way out…that’s heroic. But this? This is purely survival. It’s purely selfish. I got too much stuff I wanna do…too many things I want to see.
I live in the moment more than I ever did before
We’re all flawed. We all have things to work through in our relationships, our families, our careers. But it all comes back to this for me: you have two choices: be in the ground or live as much of this life as you can. From the beginning of this cancer journey, I knew which one I was choosing.
There's been a lot of changes. I still have moments where certain things enter back into my head, but I try not to dwell. I try to not let my mind wander to the dark side. I don’t look too forward. Because from my perspective, I've been given this extra time that I wasn't supposed to have. So I'm gonna soak up every moment of it that I can.
I live in the moment more than I ever did before. It’s a conscious choice. I wasn't supposed to see my oldest son get married. And now I have a granddaughter. None of that was supposed to happen for me. Of course there are consequences of the path I’ve taken, but that’s life. You have to make choices. And for me, staying alive was more important than everything else. I basically threw everything else out to stay alive. And I don't regret it at all. Ultimately, I’m trying to find a cure. Because I’m stubborn. Doctors tell me I won’t find one. Even if I can’t, I’ll still have gained an extra 10 or 15 years. Not a bad second place. I wouldn’t have that without clinical trials. That extra 10 years of life is my evidence.”
“Humbling is a good word to describe all of this. When I first started chemo, my middle son was graduating from high school. It was a hot June day. These are the vivid parts that you remember. My plan was to go to his graduation. But that day, I was really out of it. My wife said, are you ready to go? And I'm sitting there on the recliner in a pair of shorts. I don't think I even had a shirt on, which was not normal for me. But I said, yeah, I'm ready to go. Because that “go go go” mentality was just so innate for me. But I clearly wasn’t ready to go. And my wife’s just looking at me, because I wasn’t dressed. I was so screwed up in my head and my body just wasn't moving. She finally said, “Okay, I’ll be back.”
It still bothers me that I didn’t make it to his graduation. It just feels so wrong. But it never would have happened. My wife would have been carrying me out of there in the blasting heat of that football stadium that year. The condition I was in…it would have been a disaster.
Before my diagnosis, I used to approach life in a very straight line
I naively thought I had control over everything in my life. I’d tell my kids, this is the path you take, and if you do all these things correctly, this is what you’ll get. But with cancer, you don’t control your health. And eventually you realize you don't control anything at all. You certainly don't control your kids. They're individual people, right? So that’s been a humbling thing. You can influence things, but you can’t control them. And you may not always find the “why” behind certain things that happen. I mean, I've been genetically tested and from what the doctors currently know, there's no reason why I have prostate cancer. I don’t have any of the known prostate cancer markers. I still try to figure things out through my own research though, mostly for my two sons. I skim over a lot of data. Nothing can really change things for me at this point, but I can try to change it for them.
They said it would kill me. I thought, to hell with that.
I was 48 when it first started. My three kids were in high school and college but still young. I played sports my entire life, and I was still healthy and physically fit. I was cruising through life - at least the illusion of what I thought it was. But my diagnosis derailed that mindset completely.
It really all started with a gut feeling. I just had this feeling that something wasn’t right. So I asked my doctor to do a prostate exam. She said, you’re not 50 yet, so you don’t need to worry about having one. But I did the digital exam anyway, and that’s what set things in motion. Had I not proactively done that, I would have been gone a long time ago. I honestly don’t even want to think about that. But my point is, if you feel something is wrong, don't mess around. Get it checked out.
After my diagnosis, we started with surgery to remove my prostate, but after doing so, we found out the cancer had already progressed. The doctors knew that cancer cells were floating around inside of my body, but they couldn’t pinpoint where. They told me that I’d likely never get rid of it. They said it would kill me. I thought, to hell with that. From that point on, I was very aggressive in trying to find a way to kill the cancer before it killed me.
I started my first clinical trial within a few months after surgery. It was a combination of chemo, hormonal therapy, and radiation. We wanted to try to attack it as quickly as we could, not knowing where it was. I did that trial for about six months or so. My test results showed that the cancer was still there. It eventually landed in my spine. From there I did four more clinical trials. Unfortunately, each one of those trials had about a six month curve…where the cancer would consistently decline, but then at the bottom it’d turn and start rising again. So I’d end that trial and then start the next one.
It all finally led to a clinical trial where I didn’t get the experimental drug, but rather the standard of care, which was hormonal treatment. I’ve been on that treatment for the past 10 years. I didn’t want to do it at first. I kept putting it off. But at that point, it had been five years of playing around and nothing was working. So I thought okay, this cancer is aggressive, it’s time to pull the trigger and just do what they suggested from the beginning, which was the standard of care hormonal treatment. It’s really taken a toll on me physically, which is why I had avoided it to begin with. It changes you. I’m no longer the physically fit athlete I was. I’m beat up pretty badly. But you know, they originally gave me 3-5 years. That was my expected lifespan. And I’m 10 years past that now. So when it’s all said and done, the treatment gave me that.
You have to make a lot of tough choices when you have cancer
I've been married for 35 years. Any choices I’ve made or things I've done, we've talked about, but I made the decision. Because my belief is you are your only advocate. Your parents aren't your advocate. Your spouse isn't your advocate. Certainly we talk about things at home, but my wife doesn't go with me to treatment and appointments. She was there for my surgery, but hasn't been back in one of those facilities since. And that's just how we do it. Because it’s my choice.
Cancer really occupies everything in my life. But I've worked hard to not make it as much of a burden to my family. My kids aren't really aware of what goes on during the day-to-day. They know I have cancer, but I didn’t tell them it was stage four. I don’t want it to consume them like it does me. My perspective was that it's my issue and I will deal with it. I want them to live their life and keep moving forward, and whatever happens happens.
It’s helpful to consult with people who have been through it. Luckily for me, I have a cousin who's a pharmacist. So for every clinical trial, I’d show him the contract to get his opinion on the side-effects. Because when you’re reading it, you're like, what am I doing? So I’d send it to him and say, “How bad could this get?” And he’d be real with me, often saying it’s not worse than anything I’d already been through. So it gave me the consolation that I wasn’t crazy in agreeing to try things.
I come from a line of some pretty stubborn mules. It’s a generational thing. And a Philly thing.
When I meet with doctors, they’ll say “Okay, what can I do for you?” And I know they’re brilliant. But I always take a unique approach with a doctor consultation. I let them know, “I consider this a job interview for you. I'm looking for somebody to save my life. The question is, is it you?” And if I decide it isn’t them - for example if they agree with the way my treatment has been handled up until that point - we shake hands, I thank them for their time, and I leave.
It’s not that doctors talk down on you, but they’re going to try to tell you what to do, because they know more than you. It’s not malicious, but they have only their experiences and do not know who you are or your specific needs. And most people just aren’t equipped to break down a consultation with a doctor. But I have learned to bring them down to my level. To my level of speech and understanding. I can’t have a real conversation any other way. I set the tone from the get go. It’s not disrespectful of me, in my opinion. Because my life's on the line. I ask a lot of difficult questions to help me frame everything up in my head in a realistic way. So that I can figure out how to move forward.
As an example, in an early meeting with one of my doctors, while they were putting together a treatment plan for me, I said,” I want you to understand who you’re dealing with.” And he looked at me, seeming confused. Probably because doctors are typically used to quiet people. You know, our parents kind of just listened to the doctor and did what they said. But I made it clear that I would be more aggressive. I said, “If you told me right now that if you cut off my arm I’d be cured, then I’d do it in a heartbeat. My left arm of course, because I’m right-handed.” And the doctor just stared at me. I think he started to understand who he was dealing with. I come from a line of some pretty stubborn mules. It’s a generational thing. And a Philly thing. I'm of German Irish descent, which are two of the most stubborn cultures.
I broke down the guardrails with one of my doctors at the Cancer Institute. It became just two guys talking. I’ll never forget a time where I had found myself in a complete panic. I won’t tell you the gory details, but I thought, “This is it. Who do I call?” I hadn’t seen this doctor in a year, but I had his number so I called him anyway. And he picked up. It was obvious he was in the middle of something, yet he still answered. He said of course I remember you. I was like oh, that could be bad, ha! But then I thought maybe it’s good. My heart was racing. He talked me off the ledge, told me what to do. So I’m just thankful that I’ve chosen phenomenal people.
It made me an old man in a six-month timeframe
It's been a while since the beginning of all of this, and I conveniently start to forget things. But when I think back, it amazes me how accurate my doctors were from the get go. They told me I’d be immunocompromised and to stop traveling…that things would get pretty debilitating as the chemo poison was building up in my system. I work in sales so I kept traveling, and they kept yelling at me. I was trying to resume my life as normal. And they’re like, why aren’t you listening to us? I said, while I can, I'm going to go out and do things, and then when it really hits me, I’ll slow down.
Sure enough, when I was on a flight to Seattle, I didn’t have the strength to get my overhead luggage. Some young guy came up to me asking if I wanted help. At first I looked at him like, who are you talking to? And then it really dawned on me. I’m 6’3. I used to lift a lot of weights and was a strong person. But I didn’t even have the strength to get that thing down. So I said yeah, help would be great.
Soon after that flight, the doctors kept yelling at me until finally I realized okay, this is really getting bad. Sure, there were periods where I worked all the way through it. I worked from my home office so I could get away with it. But the second day after my dose, it all really hit. I was so spaced out trying to work. I don’t think I would have known my phone number if someone asked me.
The hormonal treatment ages you rapidly. It made me an old man in a six month timeframe. Your joints, ligaments…it affects it all. We used to do a prostate cancer fundraiser walk every Father’s Day. It was my thing that I gathered everyone for. Our entire extended family would meet at our house to drive down and go. But once I started this treatment, I could no longer do it. And I just had to sit there. I couldn’t walk. My legs just weren’t working. Because of the drugs.
I’ll never forget one moment in particular during treatment. I was halfway through chemo, sitting in the chair all hooked up to my one bag of poison. And I'm looking to my left and see a woman who was maybe 80 years old, hooked up to two bags of poison. Right then I thought to myself, “Here's this 80-year-old woman taking two bags of crap. I'm taking one and I'm feeling bad about myself. Stop whining. Let’s go.” So every time I start to get low, I look at the people around me. Or I look at the news and see the awful things happening in different parts of the world. And I think, I really don’t have any problems at all. Because I got an extra 10 years.
They all suffer with me. Because they’re living it in their own way, too.
My spouse, and my whole family, have been my support system. But like I shared earlier…the support aspect is difficult for me. Because the path I’ve taken and mindset I’ve had is that I am my only advocate. My wife and I obviously talk about things and what could happen. I let her share what’s on her mind. Because everything you go through inevitably involves other people in your life. I kind of don’t look around me…I’m just trying to save myself. But they all suffer with me. Because they’re living it in their own way, too.
When my cancer metastasized in my spine, I said to my wife, “Look, you don't need to stay for this because this is not going to end well.” She was angry at that, and started to cry. She hit me and was like, “Remember that time we got married and the vows were for better for worse?" I said, "I understand that, but I'm telling you, that if you want to go because you don't want to go through this, I won't hold any grudges against you." For as misguided as I may be, I thought it was the right thing to say. But she hit me a second time. So I guess it wasn't the right thing to do.
I’ve lost two sisters to cancer
One of them was going to this little hospital for treatment. I got into an argument with her about it. I understood it was convenient for her, but I said “Eileen, listen. Look at it this way. If you own a $400,000 Maserati and the engine was making a noise, do you go to Bob's corner gas station to have it looked at? No. You go back to the Maserati dealer who is the expert in those cars, and you have them do the work for you.”
There are plenty of good hospitals, but most of them are fixing a broken arm or a bad cut. Similar to body shops or gas stations that can change a tire, change your brakes, or do an oil change. But they are not equipped for cancer. They just don't have that skill set. Because cancer is a completely different animal. You need to find the experts because they are the ones that get into the transmission and the engine and they figure out what’s really going on. There's no other option in my opinion. I do recognize the barriers to care, though. We’re lucky being on the East Coast. It’s one of the predominant areas for cancer treatment. But if you have no way to get to those treatment centers, obviously a different conversation needs to be had. But if you are fortunate enough to live near top treatment centers, that’s where you need to go…the places that are doing the experimental stuff. Because those are the places finding the cures.
I’ve been in different trials, and in different facilities. I started at Fox Chase while we're in the beginning, and then I went and spoke to virtually everybody around here. University of Pennsylvania, Johns Hopkins, Fox Chase, those are the top three within an easy drive. Columbia and Sloan Kettering are the other two. Because if you’re gonna have somebody put a roof on your house, you get three quotes, right? Fox Chase is the closest and easiest for me, which made it easier for my family too.
It’s called medical practice for a reason, right?
My doctor recently asked me, “Do you know how much we’ve learned in the past 10 years?” It’s astonishing. And it’s because of people like me who have contributed through clinical trials. When I was first diagnosed, I didn’t have any of the genetic markers. But when the end comes for me, they’ll likely be able to test me and identify that I have the markers that they have become aware of…something they didn’t know five or 10 years ago. They’re learning every day. That’s why clinical trials exist…to learn from us. At least that’s my perspective.
It’s called medical “practice” for a reason, right? Because they’re practicing. It's no different than when you go to the car dealer to get your car fixed. You're the 55th person to have a set of brakes put on today, and I got to knock it out and get you out of there fast and get the next person in. Because they learn as they go and get better. And it’s a business, too, at the end of the day. So it's really up to you to be your own advocate to make sure that you get that few minutes of their brain focused on you. That's your job, as I see it anyway.
I don’t want somebody else to go through what I did
If telling my story can prevent somebody from being in the void of space, where they’re unable to breathe because they don't know where to go…then that’s what I’m going to do. I believe I’ve been given an extra 10 years because of clinical trials. I consider it my duty to give back to the next unfortunate souls that go through this after me.
I volunteer for a direct-to-patient program at my treatment facility. They match you up with people who are under similar circumstances. So you can share your story and consult with someone who has had a similar diagnosis, and they can provide guidance and walk you through the steps to take. I've spoken to quite a few people. And they’ll say things like, “How did you make that choice? Why would you do that? I don't want to do that.” And I'm like, yeah, I totally understand. It's an individual choice that you have to make.
When I talk to other people in similar situations - particularly folks whose minds are on the dark side of things - they often say they don’t think they can get through a clinical trial, or any of the treatment at all. They don’t want to be poked and prodded anymore. They don’t want the scans or all the nuclear stuff. And my response is, “What are the consequences of not doing it? What are the consequences of doing it?” Because that's what you have to look at in order to stay here. To stay alive. Honestly, sometimes I’d get angry. It’s tempered a little bit over time, when I realized first-hand just how exhausting all of the blood draws are. But I’d do it a thousand times over. I know my approach isn’t for everyone. It’s abrupt for many people. So I’m trying to be careful and intentional when I share my experience.
It’s important to establish goals and objectives
Clinical trials are a really strong option to consider, especially if your doctors are telling you there’s not much they can do for you. But the path you take depends on your situation and your diagnosis. There are questions you have to consider. How bad is your disease? What is the path it is predicted to take? A trial is an experiment, and there are consequences to experiments. It’s important to establish goals and objectives…what you’re looking to get out of treatment.
For clinical trials specifically, a lot of the upfront work can be done right on the computer. But you need resources on where to start. I remember at the beginning, people would preach “Do your homework!” And I’m like, what does that even mean? Homework about what? It took me a while to understand what that meant and what I needed to do. Which is why I’m here with you today…I don’t want somebody else to go through what I did. Because if you’ve never been sick, it’s hard to know where to go. It’s a daunting thing. But if you have Internet access, you can start Googling clinical trials for whatever your disease is. That’s a good start. But, the Internet can also be a dangerous place. There’s some really screwed up stuff on there. I mean I saw one guy - a medical doctor - posting videos about how prostate cancer is fake. And if you go down that rabbit hole of content, you can end up dead pretty fast. So just be mindful of that.
Through my own research I eventually found the National Cancer Institute, which is the federal government's main place that documents and houses all the clinical trials that are available for cancer of any sort. From there, you have to dig through to get to prostate cancer. Most clinical trials are free, other than transportation, which I know is a barrier. But if you have a way to get there, the medicines are generally free. There’s a contract you sign to say that you understand the potential consequences of your participation. They spell it all out in the contract. Because there’s a lot that goes into it. You’re better off going through this process with a couple of people who understand the landscape. It’s a ton of information and can be overwhelming.
I try to redirect my brain as much as I can, back to the things that make me happy
The trial I’ve been on has officially ended. I’m going to continue taking what I’ve been taking, because my numbers have outperformed everybody else in the study. I asked my doctor, “I'm making plans for the rest of my life. Should I continue making plans or should I start wrapping stuff up?” He told me to keep making plans. But ultimately, nobody knows what tomorrow holds. You could walk out the front door and get hit by a bus. Anything can happen. So I don't look too far down the road anymore. I still have the same issues that everyone else has, but now I just have a better perspective on it all. I try to redirect my brain as much as I can, back to the things that make me happy. It’s not always easy, but I try to do it on a regular basis.
Family members have told me before that I’m their hero. And I'm like, what? No I'm not. A hero is somebody like a fireman. I used to be one. Scenarios where you jump out of a window and grab the baby on the way out…that’s heroic. But this? This is purely survival. It’s purely selfish. I got too much stuff I wanna do…too many things I want to see.
I live in the moment more than I ever did before
We’re all flawed. We all have things to work through in our relationships, our families, our careers. But it all comes back to this for me: you have two choices: be in the ground or live as much of this life as you can. From the beginning of this cancer journey, I knew which one I was choosing.
There's been a lot of changes. I still have moments where certain things enter back into my head, but I try not to dwell. I try to not let my mind wander to the dark side. I don’t look too forward. Because from my perspective, I've been given this extra time that I wasn't supposed to have. So I'm gonna soak up every moment of it that I can.
I live in the moment more than I ever did before. It’s a conscious choice. I wasn't supposed to see my oldest son get married. And now I have a granddaughter. None of that was supposed to happen for me. Of course there are consequences of the path I’ve taken, but that’s life. You have to make choices. And for me, staying alive was more important than everything else. I basically threw everything else out to stay alive. And I don't regret it at all. Ultimately, I’m trying to find a cure. Because I’m stubborn. Doctors tell me I won’t find one. Even if I can’t, I’ll still have gained an extra 10 or 15 years. Not a bad second place. I wouldn’t have that without clinical trials. That extra 10 years of life is my evidence.”
“Humbling is a good word to describe all of this. When I first started chemo, my middle son was graduating from high school. It was a hot June day. These are the vivid parts that you remember. My plan was to go to his graduation. But that day, I was really out of it. My wife said, are you ready to go? And I'm sitting there on the recliner in a pair of shorts. I don't think I even had a shirt on, which was not normal for me. But I said, yeah, I'm ready to go. Because that “go go go” mentality was just so innate for me. But I clearly wasn’t ready to go. And my wife’s just looking at me, because I wasn’t dressed. I was so screwed up in my head and my body just wasn't moving. She finally said, “Okay, I’ll be back.”
It still bothers me that I didn’t make it to his graduation. It just feels so wrong. But it never would have happened. My wife would have been carrying me out of there in the blasting heat of that football stadium that year. The condition I was in…it would have been a disaster.
Before my diagnosis, I used to approach life in a very straight line
I naively thought I had control over everything in my life. I’d tell my kids, this is the path you take, and if you do all these things correctly, this is what you’ll get. But with cancer, you don’t control your health. And eventually you realize you don't control anything at all. You certainly don't control your kids. They're individual people, right? So that’s been a humbling thing. You can influence things, but you can’t control them. And you may not always find the “why” behind certain things that happen. I mean, I've been genetically tested and from what the doctors currently know, there's no reason why I have prostate cancer. I don’t have any of the known prostate cancer markers. I still try to figure things out through my own research though, mostly for my two sons. I skim over a lot of data. Nothing can really change things for me at this point, but I can try to change it for them.
They said it would kill me. I thought, to hell with that.
I was 48 when it first started. My three kids were in high school and college but still young. I played sports my entire life, and I was still healthy and physically fit. I was cruising through life - at least the illusion of what I thought it was. But my diagnosis derailed that mindset completely.
It really all started with a gut feeling. I just had this feeling that something wasn’t right. So I asked my doctor to do a prostate exam. She said, you’re not 50 yet, so you don’t need to worry about having one. But I did the digital exam anyway, and that’s what set things in motion. Had I not proactively done that, I would have been gone a long time ago. I honestly don’t even want to think about that. But my point is, if you feel something is wrong, don't mess around. Get it checked out.
After my diagnosis, we started with surgery to remove my prostate, but after doing so, we found out the cancer had already progressed. The doctors knew that cancer cells were floating around inside of my body, but they couldn’t pinpoint where. They told me that I’d likely never get rid of it. They said it would kill me. I thought, to hell with that. From that point on, I was very aggressive in trying to find a way to kill the cancer before it killed me.
I started my first clinical trial within a few months after surgery. It was a combination of chemo, hormonal therapy, and radiation. We wanted to try to attack it as quickly as we could, not knowing where it was. I did that trial for about six months or so. My test results showed that the cancer was still there. It eventually landed in my spine. From there I did four more clinical trials. Unfortunately, each one of those trials had about a six month curve…where the cancer would consistently decline, but then at the bottom it’d turn and start rising again. So I’d end that trial and then start the next one.
It all finally led to a clinical trial where I didn’t get the experimental drug, but rather the standard of care, which was hormonal treatment. I’ve been on that treatment for the past 10 years. I didn’t want to do it at first. I kept putting it off. But at that point, it had been five years of playing around and nothing was working. So I thought okay, this cancer is aggressive, it’s time to pull the trigger and just do what they suggested from the beginning, which was the standard of care hormonal treatment. It’s really taken a toll on me physically, which is why I had avoided it to begin with. It changes you. I’m no longer the physically fit athlete I was. I’m beat up pretty badly. But you know, they originally gave me 3-5 years. That was my expected lifespan. And I’m 10 years past that now. So when it’s all said and done, the treatment gave me that.
You have to make a lot of tough choices when you have cancer
I've been married for 35 years. Any choices I’ve made or things I've done, we've talked about, but I made the decision. Because my belief is you are your only advocate. Your parents aren't your advocate. Your spouse isn't your advocate. Certainly we talk about things at home, but my wife doesn't go with me to treatment and appointments. She was there for my surgery, but hasn't been back in one of those facilities since. And that's just how we do it. Because it’s my choice.
Cancer really occupies everything in my life. But I've worked hard to not make it as much of a burden to my family. My kids aren't really aware of what goes on during the day-to-day. They know I have cancer, but I didn’t tell them it was stage four. I don’t want it to consume them like it does me. My perspective was that it's my issue and I will deal with it. I want them to live their life and keep moving forward, and whatever happens happens.
It’s helpful to consult with people who have been through it. Luckily for me, I have a cousin who's a pharmacist. So for every clinical trial, I’d show him the contract to get his opinion on the side-effects. Because when you’re reading it, you're like, what am I doing? So I’d send it to him and say, “How bad could this get?” And he’d be real with me, often saying it’s not worse than anything I’d already been through. So it gave me the consolation that I wasn’t crazy in agreeing to try things.
I come from a line of some pretty stubborn mules. It’s a generational thing. And a Philly thing.
When I meet with doctors, they’ll say “Okay, what can I do for you?” And I know they’re brilliant. But I always take a unique approach with a doctor consultation. I let them know, “I consider this a job interview for you. I'm looking for somebody to save my life. The question is, is it you?” And if I decide it isn’t them - for example if they agree with the way my treatment has been handled up until that point - we shake hands, I thank them for their time, and I leave.
It’s not that doctors talk down on you, but they’re going to try to tell you what to do, because they know more than you. It’s not malicious, but they have only their experiences and do not know who you are or your specific needs. And most people just aren’t equipped to break down a consultation with a doctor. But I have learned to bring them down to my level. To my level of speech and understanding. I can’t have a real conversation any other way. I set the tone from the get go. It’s not disrespectful of me, in my opinion. Because my life's on the line. I ask a lot of difficult questions to help me frame everything up in my head in a realistic way. So that I can figure out how to move forward.
As an example, in an early meeting with one of my doctors, while they were putting together a treatment plan for me, I said,” I want you to understand who you’re dealing with.” And he looked at me, seeming confused. Probably because doctors are typically used to quiet people. You know, our parents kind of just listened to the doctor and did what they said. But I made it clear that I would be more aggressive. I said, “If you told me right now that if you cut off my arm I’d be cured, then I’d do it in a heartbeat. My left arm of course, because I’m right-handed.” And the doctor just stared at me. I think he started to understand who he was dealing with. I come from a line of some pretty stubborn mules. It’s a generational thing. And a Philly thing. I'm of German Irish descent, which are two of the most stubborn cultures.
I broke down the guardrails with one of my doctors at the Cancer Institute. It became just two guys talking. I’ll never forget a time where I had found myself in a complete panic. I won’t tell you the gory details, but I thought, “This is it. Who do I call?” I hadn’t seen this doctor in a year, but I had his number so I called him anyway. And he picked up. It was obvious he was in the middle of something, yet he still answered. He said of course I remember you. I was like oh, that could be bad, ha! But then I thought maybe it’s good. My heart was racing. He talked me off the ledge, told me what to do. So I’m just thankful that I’ve chosen phenomenal people.
It made me an old man in a six-month timeframe
It's been a while since the beginning of all of this, and I conveniently start to forget things. But when I think back, it amazes me how accurate my doctors were from the get go. They told me I’d be immunocompromised and to stop traveling…that things would get pretty debilitating as the chemo poison was building up in my system. I work in sales so I kept traveling, and they kept yelling at me. I was trying to resume my life as normal. And they’re like, why aren’t you listening to us? I said, while I can, I'm going to go out and do things, and then when it really hits me, I’ll slow down.
Sure enough, when I was on a flight to Seattle, I didn’t have the strength to get my overhead luggage. Some young guy came up to me asking if I wanted help. At first I looked at him like, who are you talking to? And then it really dawned on me. I’m 6’3. I used to lift a lot of weights and was a strong person. But I didn’t even have the strength to get that thing down. So I said yeah, help would be great.
Soon after that flight, the doctors kept yelling at me until finally I realized okay, this is really getting bad. Sure, there were periods where I worked all the way through it. I worked from my home office so I could get away with it. But the second day after my dose, it all really hit. I was so spaced out trying to work. I don’t think I would have known my phone number if someone asked me.
The hormonal treatment ages you rapidly. It made me an old man in a six month timeframe. Your joints, ligaments…it affects it all. We used to do a prostate cancer fundraiser walk every Father’s Day. It was my thing that I gathered everyone for. Our entire extended family would meet at our house to drive down and go. But once I started this treatment, I could no longer do it. And I just had to sit there. I couldn’t walk. My legs just weren’t working. Because of the drugs.
I’ll never forget one moment in particular during treatment. I was halfway through chemo, sitting in the chair all hooked up to my one bag of poison. And I'm looking to my left and see a woman who was maybe 80 years old, hooked up to two bags of poison. Right then I thought to myself, “Here's this 80-year-old woman taking two bags of crap. I'm taking one and I'm feeling bad about myself. Stop whining. Let’s go.” So every time I start to get low, I look at the people around me. Or I look at the news and see the awful things happening in different parts of the world. And I think, I really don’t have any problems at all. Because I got an extra 10 years.
They all suffer with me. Because they’re living it in their own way, too.
My spouse, and my whole family, have been my support system. But like I shared earlier…the support aspect is difficult for me. Because the path I’ve taken and mindset I’ve had is that I am my only advocate. My wife and I obviously talk about things and what could happen. I let her share what’s on her mind. Because everything you go through inevitably involves other people in your life. I kind of don’t look around me…I’m just trying to save myself. But they all suffer with me. Because they’re living it in their own way, too.
When my cancer metastasized in my spine, I said to my wife, “Look, you don't need to stay for this because this is not going to end well.” She was angry at that, and started to cry. She hit me and was like, “Remember that time we got married and the vows were for better for worse?" I said, "I understand that, but I'm telling you, that if you want to go because you don't want to go through this, I won't hold any grudges against you." For as misguided as I may be, I thought it was the right thing to say. But she hit me a second time. So I guess it wasn't the right thing to do.
I’ve lost two sisters to cancer
One of them was going to this little hospital for treatment. I got into an argument with her about it. I understood it was convenient for her, but I said “Eileen, listen. Look at it this way. If you own a $400,000 Maserati and the engine was making a noise, do you go to Bob's corner gas station to have it looked at? No. You go back to the Maserati dealer who is the expert in those cars, and you have them do the work for you.”
There are plenty of good hospitals, but most of them are fixing a broken arm or a bad cut. Similar to body shops or gas stations that can change a tire, change your brakes, or do an oil change. But they are not equipped for cancer. They just don't have that skill set. Because cancer is a completely different animal. You need to find the experts because they are the ones that get into the transmission and the engine and they figure out what’s really going on. There's no other option in my opinion. I do recognize the barriers to care, though. We’re lucky being on the East Coast. It’s one of the predominant areas for cancer treatment. But if you have no way to get to those treatment centers, obviously a different conversation needs to be had. But if you are fortunate enough to live near top treatment centers, that’s where you need to go…the places that are doing the experimental stuff. Because those are the places finding the cures.
I’ve been in different trials, and in different facilities. I started at Fox Chase while we're in the beginning, and then I went and spoke to virtually everybody around here. University of Pennsylvania, Johns Hopkins, Fox Chase, those are the top three within an easy drive. Columbia and Sloan Kettering are the other two. Because if you’re gonna have somebody put a roof on your house, you get three quotes, right? Fox Chase is the closest and easiest for me, which made it easier for my family too.
It’s called medical practice for a reason, right?
My doctor recently asked me, “Do you know how much we’ve learned in the past 10 years?” It’s astonishing. And it’s because of people like me who have contributed through clinical trials. When I was first diagnosed, I didn’t have any of the genetic markers. But when the end comes for me, they’ll likely be able to test me and identify that I have the markers that they have become aware of…something they didn’t know five or 10 years ago. They’re learning every day. That’s why clinical trials exist…to learn from us. At least that’s my perspective.
It’s called medical “practice” for a reason, right? Because they’re practicing. It's no different than when you go to the car dealer to get your car fixed. You're the 55th person to have a set of brakes put on today, and I got to knock it out and get you out of there fast and get the next person in. Because they learn as they go and get better. And it’s a business, too, at the end of the day. So it's really up to you to be your own advocate to make sure that you get that few minutes of their brain focused on you. That's your job, as I see it anyway.
I don’t want somebody else to go through what I did
If telling my story can prevent somebody from being in the void of space, where they’re unable to breathe because they don't know where to go…then that’s what I’m going to do. I believe I’ve been given an extra 10 years because of clinical trials. I consider it my duty to give back to the next unfortunate souls that go through this after me.
I volunteer for a direct-to-patient program at my treatment facility. They match you up with people who are under similar circumstances. So you can share your story and consult with someone who has had a similar diagnosis, and they can provide guidance and walk you through the steps to take. I've spoken to quite a few people. And they’ll say things like, “How did you make that choice? Why would you do that? I don't want to do that.” And I'm like, yeah, I totally understand. It's an individual choice that you have to make.
When I talk to other people in similar situations - particularly folks whose minds are on the dark side of things - they often say they don’t think they can get through a clinical trial, or any of the treatment at all. They don’t want to be poked and prodded anymore. They don’t want the scans or all the nuclear stuff. And my response is, “What are the consequences of not doing it? What are the consequences of doing it?” Because that's what you have to look at in order to stay here. To stay alive. Honestly, sometimes I’d get angry. It’s tempered a little bit over time, when I realized first-hand just how exhausting all of the blood draws are. But I’d do it a thousand times over. I know my approach isn’t for everyone. It’s abrupt for many people. So I’m trying to be careful and intentional when I share my experience.
It’s important to establish goals and objectives
Clinical trials are a really strong option to consider, especially if your doctors are telling you there’s not much they can do for you. But the path you take depends on your situation and your diagnosis. There are questions you have to consider. How bad is your disease? What is the path it is predicted to take? A trial is an experiment, and there are consequences to experiments. It’s important to establish goals and objectives…what you’re looking to get out of treatment.
For clinical trials specifically, a lot of the upfront work can be done right on the computer. But you need resources on where to start. I remember at the beginning, people would preach “Do your homework!” And I’m like, what does that even mean? Homework about what? It took me a while to understand what that meant and what I needed to do. Which is why I’m here with you today…I don’t want somebody else to go through what I did. Because if you’ve never been sick, it’s hard to know where to go. It’s a daunting thing. But if you have Internet access, you can start Googling clinical trials for whatever your disease is. That’s a good start. But, the Internet can also be a dangerous place. There’s some really screwed up stuff on there. I mean I saw one guy - a medical doctor - posting videos about how prostate cancer is fake. And if you go down that rabbit hole of content, you can end up dead pretty fast. So just be mindful of that.
Through my own research I eventually found the National Cancer Institute, which is the federal government's main place that documents and houses all the clinical trials that are available for cancer of any sort. From there, you have to dig through to get to prostate cancer. Most clinical trials are free, other than transportation, which I know is a barrier. But if you have a way to get there, the medicines are generally free. There’s a contract you sign to say that you understand the potential consequences of your participation. They spell it all out in the contract. Because there’s a lot that goes into it. You’re better off going through this process with a couple of people who understand the landscape. It’s a ton of information and can be overwhelming.
I try to redirect my brain as much as I can, back to the things that make me happy
The trial I’ve been on has officially ended. I’m going to continue taking what I’ve been taking, because my numbers have outperformed everybody else in the study. I asked my doctor, “I'm making plans for the rest of my life. Should I continue making plans or should I start wrapping stuff up?” He told me to keep making plans. But ultimately, nobody knows what tomorrow holds. You could walk out the front door and get hit by a bus. Anything can happen. So I don't look too far down the road anymore. I still have the same issues that everyone else has, but now I just have a better perspective on it all. I try to redirect my brain as much as I can, back to the things that make me happy. It’s not always easy, but I try to do it on a regular basis.
Family members have told me before that I’m their hero. And I'm like, what? No I'm not. A hero is somebody like a fireman. I used to be one. Scenarios where you jump out of a window and grab the baby on the way out…that’s heroic. But this? This is purely survival. It’s purely selfish. I got too much stuff I wanna do…too many things I want to see.
I live in the moment more than I ever did before
We’re all flawed. We all have things to work through in our relationships, our families, our careers. But it all comes back to this for me: you have two choices: be in the ground or live as much of this life as you can. From the beginning of this cancer journey, I knew which one I was choosing.
There's been a lot of changes. I still have moments where certain things enter back into my head, but I try not to dwell. I try to not let my mind wander to the dark side. I don’t look too forward. Because from my perspective, I've been given this extra time that I wasn't supposed to have. So I'm gonna soak up every moment of it that I can.
I live in the moment more than I ever did before. It’s a conscious choice. I wasn't supposed to see my oldest son get married. And now I have a granddaughter. None of that was supposed to happen for me. Of course there are consequences of the path I’ve taken, but that’s life. You have to make choices. And for me, staying alive was more important than everything else. I basically threw everything else out to stay alive. And I don't regret it at all. Ultimately, I’m trying to find a cure. Because I’m stubborn. Doctors tell me I won’t find one. Even if I can’t, I’ll still have gained an extra 10 or 15 years. Not a bad second place. I wouldn’t have that without clinical trials. That extra 10 years of life is my evidence.”
Try to understand the patient and who they are, what motivates them, what is important to them. These are the things that will be the most important drivers and motivators to the patient. Difficult decisions will have to be made by the patient. The important motivators to the patient will be the tools needed for them to push forward through treatments. Motivation, happiness, simplicity, and lower stress all are keys to keeping spirits high to get through the rough road ahead.
Representation Matters
Increasing diversity in clinical trials builds trust, promotes health equity, and leads to more effective treatments and better outcomes (NEJM). But there is much work to be done - and barriers to break - to improve awareness and access for all people.
Do you know someone who is a member of a marginalized community who has participated in a clinical trial? If so, we’d love to meet them and share their story. We hope to represent the many faces of clinical trials through this project, and inspire others by shining a light on their experience.
They can contact us here.
