Podcast of David’s Story: You Have to Find the Humor In It

October 1, 2024  

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Transcript

Voice over:

This is Bladder Cancer Matters, the podcast for bladder cancer patients, caregivers, advocates, and medical and research professionals. It’s brought to you by the Bladder Cancer Advocacy Network, otherwise known as BCAN. BCAN works to increase public awareness about bladder cancer, advances bladder cancer research, and provides educational and support services for bladder cancer patients and their loved ones. To learn more, please visit BCAN.org.

Rick Bangs:

Hi, I’m Rick Bangs, the host of Bladder Cancer Matters, a podcast for, by, and about the bladder cancer community. I’m also a survivor of muscle-invasive bladder cancer, the proud owner of a 2006 model year neobladder, and a patient advocate supporting cancer research at the Bladder Cancer Advocacy Network, or as many call it BCAN, producers of this podcast.

I’m pleased to welcome today’s guest, David McKenzie. David lives in the Raleigh-Durham-Chapel Hill area of North Carolina, which I believe is called the Research Triangle. He’s a trial and appellate attorney who specializes in intellectual property, media rights and first amendment disputes. He’s 50 years old and the proud father of two daughters. David was diagnosed with high-grade non-muscle-invasive bladder cancer in September 2023. David, thanks for joining our podcast.

David McKenzie:

Thank you for having me.

Rick Bangs:

It’s our pleasure. So you had a lengthy on-ramp to your bladder cancer diagnosis and you had several instances of blood in your urine, but the bladder cancer diagnosis didn’t happen for quite a while, so how did that all transpire?

David McKenzie:

Yeah, I will try to give the Cliff notes version of this. I’ll treat it like the pee cup you use for urinalysis, right? You don’t want to overflow it.

Rick Bangs:

Yeah, we just want a sample.

David McKenzie:

You just want a sample. Exactly. Yeah. I was diagnosed in September of 2023, and I think that the actual story begins a year earlier in some change. In the summer of 2022, I was training for the Marine Corps Marathon at the time in DC, and I was getting into some of the deeper training that’s required, what’s called long runs. And so I think it was around when I started getting up to around 10 or 12 miles, I started having an urgency to pee, to urinate more. And I kind of chalked it up to all the hydration I was doing that was necessary for those kinds of long runs.

But the deeper I went into the mileage, the more discolored, or I would say darker that my urine started to become. And I can remember distinctly probably would’ve been around exactly this time two years ago. I just started noticing it was just turning more yellow and more yellow, but the symptoms always went away. And I don’t think that’s unique to me. I’ve heard that a lot from a lot of people who are dealing with this condition.

And after I got done with the run about two or three hours later, it was certainly gone. And so I chalked it up to something that I had heard of and unfortunately read on the internet about runner’s hematuria, which actually happens to be a thing, I understand, where blood cells break down in the urine, so I chalked it up to that. But as things went on in my training. And interestingly, when you’re training for a marathon, you always go up to sort of a plateau and then you taper. And during that taper, which happened a month before the Marine Corps, it just kind of went away completely. And even though I was still training, I just wasn’t training with the same intensity. But then during the Marine Corps marathon, late October of 2023, I can remember distinctly I was at mile 18 on the National Mall and had to pee.

And truly at mile 18, you shouldn’t be peeing, you should be just sweating everything out. So I went into one of the porta potties off the National Mall, and it wasn’t really yellow, it was just kind of a light brown. And I, as any participant wants to do, went ahead and completed the marathon. And when I got back to the triangle, I went ahead and made an appointment with my physician, and that was about a month and some change out, in the first week of December. And so I went and shared with him, and it was a routine checkup, cholesterol, that kind of thing. And I shared with him the symptoms I’d had in the previous months leading up to seeing him and during the marathon training. And he also kind of surmised that it was related to the running and the training.

And he asked a very good question and said, “Did it look like watered down diet Coke or something like that?” And I was sort of stuck on the urine being yellow and a dark yellow. So I was like, not really. And so I went home that afternoon and I thought about it, I was like, “That probably wasn’t all that accurate.” I think I remembered what happened on the National Mall. And so I got my computer out sending my chart message, said, “Yes, it was Diet Coke, watered down pee. I can confirm that.” And so I got a response back from somebody in his office and just said, “Just come in next time you come in, we’ll just do it a urinalysis or something to that effect. And so I was kind of confident it was runner’s hematuria. I didn’t think much of it. I went ahead and completed the New York Half Marathon in that spring of 2023 and didn’t really have any problems then.

And then I decided to do the Marine Corps marathon again in the summer of 2023, and the symptoms started all over again. And so I, at that time, at the behest of somebody important in my life, I went ahead and made another appointment. And this time I came in, I was just like, “Give me this urinalysis. We need to do this.” And so I take it, and this was I think the first week of August of 2023, I take the urinalysis results, come back and it’s like three plus blood. I don’t even know what that means, if it has any meaning here. But I didn’t hear anything immediately as a result of the urinalysis. And so I let basically 10 or 12 days go by and my longtime girlfriend was just like, “You need to call him.” And I was like, well, I mean, I’m sure other listeners can relate to this. Calling a doctor’s office is kind of like a crapshoot.

So I didn’t want to roll the dice and I wanted to be seen quicker than that. So I just went ahead and made it a virtual appointment. And that virtual appointment came about a year ago today. And the only purpose of it was to say, “Hey man, what’s up with this blood? What I need to do?” And he immediately comes on and he is like, “Do you want to start with urology or radiology?”

So I was like, oh. And I was like, “Listen, my man, you know what it’s like to be a patient right? With white coat syndrome? That’s me. Which is going to be less invasive?” And he is just referred me over to radiology. So I took the radiology, I was in one of the major academic center system, and I had to wait two months to get that radiology appointment. And it may have been because of the level of insurance I have, I don’t know, but I wasn’t about to wait two months. And so I just sort of became persistent and treated it one of my cases. And I started calling every day to see if there was a cancellation,

Rick Bangs:

Which is a good strategy.

David McKenzie:

Yeah. To treat it like a witness who’s trying to duck service on you. So I called, I think it was twice a day for about five days, and I got a cancellation. It was in Cary, which wasn’t all that convenient, but I went ahead and went over to the radiology appointment and went through it. And I have to think that, and this is all speculation, but I have to think that there was some sort of artificial intelligence that was able to read my report or that the tech himself was skilled enough to see that something wasn’t quite right. And so he came out and he said, “I’m going to put a rush on this because I can see how anxious you are.” And so I said, thank you, of course. And I went home and I got home to Raleigh and I get the MyChart message.

It just seemed incredibly innocuous at first. I was reading something like a long scroll and I kept on going down, I kept on going down, and then boom went the dynamite. It got to my bladder and it just said, “Suspected carcinoma for suspected tumors, refer to a urologist as soon as possible.” In a kind of miraculous way that I won’t get into, I was able to see a urologist the next day, and he’s still my urologist to this day. And I was actually able to get him on the phone that same day in sort of another miraculous way. And he explains that bladder cancer looks like cauliflower, and the best way to really identify is to go up through your penis, which of course I was excited about. And through your penis, I didn’t know that you could stick a camera up a penis, but I do now.

Rick Bangs:

Yeah, we all learned that, don’t we?

David McKenzie:

Yeah, no kidding. And so the next day I’m at WakeMed here in Raleigh, and the cystoscopy is performed, which I think I can actually spell faster than I can say cystoscopy if I say that correctly. I’ve spelled it so many times. The cystoscopy is performed in… I just here. There it is, cauliflower. And so boom went the dynamite again. That was on a Thursday. And then we were able to get surgery scheduled for that Monday. And so that Monday that weekend was a small slice of hell, but I made it through. And we had the first TURBT on that Monday. So I don’t know if I overfilled the pee cup or not, but that’s sort of the Cliff note version if you will.

Rick Bangs:

Wow. Wow. Yeah. So lesson learned. If there’s blood in your urine, get it checked out. Not a good sign.

David McKenzie:

No doubt.

Rick Bangs:

Okay, so you’ve got a bladder cancer diagnosis now. Did you go in with any risk factors?

David McKenzie:

Yeah, I did not. And I think as a… We’ll gently say that. I mean I sort of developed a contempt for that question to some extent, but no, because I think that the common assumption is that bladder cancer some way is externally caused by something that you do.

Rick Bangs:

Well, or it can be done to you. So smoking is, obviously, smoking is the logical one, but people have arsenic in wells or they work in an environment which doesn’t sound like something you would’ve done, but they work in an environment where they’re exposed to chemicals. So it’s pretty much environmentally caused.

David McKenzie:

Yeah. And this is a straight-up whodunit. I sort of feel like in asking, and I realize that that good people are trying to get good data points in order to help me. But it does seem like at least, I don’t want to say from medical professionals, but from friends and family, sort of what was it that you were doing that made this happen? And I’m a non-smoker. I’ve never worked with any kind of hazardous chemicals. I’ve never worked with any kind of chemicals at all. I mean, I don’t even put Roundup in my yard. I think that crab grass is beautiful. I generally would avoid anything. And I’m not a supplement person, so I don’t have any of the classic risk factors. And the bladder cancer may be caused by something. This is a straight-up whodunit. We don’t know what caused it and we never will.

Rick Bangs:

Well, you’re not alone, including me. All right, so along the way, you get a second opinion, which I always recommend. I think it can be very helpful, but it’s not without its challenges. So we did a podcast on second opinions. We tried to clear up some of the mystery around that and how the patient should navigate that, how to do it. So what was your logic for getting a second opinion and how did you navigate it?

David McKenzie:

Well, it was your podcast, as a matter of fact, I just remember you had some sort of doctor on from the University of California, San Francisco, and I don’t recall his name. And it was just your podcast discussing the benefits of second opinions. And of course, I think that was in November of 2023 last year. I thought it was a great podcast. And I was aware, of course, everybody’s going to think about second opinions in a situation like this.

But as I’ve shared with others, I’ve always looked at second opinions. As an attorney, when you get somebody coming to you for a second opinion or they’re trying to switch attorneys or something like that, nine out of 10 times, as long as it’s not somebody, as long as it’s in the same field like IP or media rights or something like that, nine out of 10 times they just don’t like what they’re hearing and they don’t like the advice that they’re giving, not because it was wrong, they just don’t like it.

Rick Bangs:

Yeah, right, right, right.

David McKenzie:

Nine out of 10 times I end up, unless they’re some sort of general practitioner that’s out of his league or her league, I tell them the exact same thing. And so I’ve always looked at that as a red flag and I really did feel like I was in competent hands. But after that podcast, I generally thought that I can at least get more information.

Rick Bangs:

Well, yeah, that’s the whole point.

David McKenzie:

And I didn’t think that there was anything wrong with that. And then so you know, and listeners know that I’m just sort of an informational sponge. I want to know as much as I can.

Rick Bangs:

You’re not alone.

David McKenzie:

Through a connection, mutual friend that we had who’s a radiation oncologist, was able to see somebody over at UNC. And that was actually a great thing to do because it did give me information, it gave me the confidence to also proceed with WakeMed. He looked at my situation, looked at my file, had some pathology sent over to UNC and just said, “I would do exactly what WakeMed is doing, and you’re in good hands. And I can look into some clinical trials for you if you want to see if they’re being offered for non-muscle invasive bladder cancer here at UNC and get back to you if you want me to do that.”

And I said yes to that. There was nothing that was going on over at Carolina. It was a brief 30-minute consult at max. And so it wasn’t really a second opinion as much as it was like, give me all the information. He did run a second look at the pathology report to make sure that it had not, as I say, hit the muscle wall and it hadn’t. So it wasn’t a perfunctory thing to do. It actually ended up giving me more confidence going forward than I had all the information I needed. I didn’t need to go to any kind of heroic measures, that we just needed to proceed with the course that had already been established.

Rick Bangs:

And getting that second opinion on the pathology can be very, very helpful because even a pathology report can sometimes be wrong. And if it’s the wrong diagnosis, you’re going to get the wrong treatment. So I want to talk about your treatment, which is not dissimilar from your journey up to this point, but it had some interesting twists and turns. So your first treatment was BCG, so how did that go?

David McKenzie:

It was straight up BCG. I guess it went fine. It was interesting. Of course, like everybody, I had six weeks of BCG. This would’ve been in November, December of last year and tolerated them pretty well there. I call it pissing shards of glass. And I think that’s a fair description. I mean, some people use razor blades, but that was the number one side effect of it.

I’ll say this unique side effect that I haven’t heard reported, it was like, I also kind of was in a fog afterwards, if you will, where I just had this mental fog where I forget where I was, but I tolerate it pretty well and did the six-week treatment and went through the holiday season and came back to WakeMed in January of 2024 and bingo, I had a clean scan. No recurrence, everything looked fine. I’ve never been so excited to have a cystoscopy.

And I went home, I put it on Facebook and tweeted it out. No, I didn’t do any of that. But no, I was confident and excited and I was like, “Yeah, we can do this.” And I didn’t really understand the disease at that point to the extent I think I do now, but that was an important one.

Then it was all about the next cystoscopy, and I was kind of disappointed that I didn’t make the Marine Corps Marathon the previous fall because of the treatments and the surgeries and all that jazz. So I went ahead and decided that I was going to do something. And so I ran actually a marathon here in the triangle, the Tobacco Road Marathon, and didn’t have any of the symptoms that I had the first time around. No blood in the urine, nothing. So I was excited. I thought that maybe we had kicked this thing in the teeth.

And so I come back from my regularly scheduled cystoscopy in April of this year, and I fairly confident and I go in and my urologist found a very small relative, I think it was very small, one centimeter or something like that. I don’t know what’s large or small, but a small recurrence. And we’re back into TURBT number two to remove it. So we did that. So yeah, unfortunately I had that recurrence. It was small, but it was still a recurrence.

Rick Bangs:

Right. So at that point, the BCG has failed you because you had the recurrence. So this is when you get a newly FDA approved, newly this year, I believe FDA approved option, and it goes by the name of Nogapendekin alfa inbakicept-pmln. And so that name’s a mouthful, and I’ve heard doctors refer to it as Noga, so we’re going to call it Noga from now on. So tell us how Noga is administered. Is it used alone or is it done in combination with something and how often do you receive it?

David McKenzie:

Let me first tell you how I found out about it, because I think this is important. I found out about it while I was at the Walk to End Bladder Cancer in Chapel Hill, and I had been researching pretty much everything I could get my hands on, but I happened to go up to a nurse practitioner in Chapel Hill and just asked, “You aware of any new treatments?”, that kind of thing. And she was like, “Actually, there’s something that came up this week. There’s the table. I don’t know that much about it. I’m having a meeting this week.”

So I just went up to the Noga rep and I just engaged her. So that’s how I found out about it. To answer your principal question, it’s administered no differently than BCG. I can’t tell a difference. The only difference I would say is that whatever the substance that’s going into my bladder is a little bit more cloudy than what I saw the BCG, as you are probably aware, it is BCG. They just add a little bit of this Noga to it, and it’s mixed in the pharmacy. It has basically, once it’s mixed, it has a two-hour shelf life, but it’s administered the exact same way. I can’t tell a difference.

Rick Bangs:

And how many times did you get it or will you get it?

David McKenzie:

I’m still getting it. I go up to bat tomorrow. Yeah. So looking forward to that day. I’m getting it six times, just like as normal protocols are with BCG. So I’m in week five of six. I’m very happy to report one of the biggest, there’s no difference in the actual administration. I can’t tell a difference. I can tell a difference in the side effects. And those for whatever reasons, and I’m sure scientists and medical doctors can explain it, those razor blades, those shards of glass are not as intense. They don’t last as long on the day of the treatment. And BCG, I pretty much would be out of service until about nine or 10 o’clock at night. This is just shorter. And the intervals between urinating are longer. So I mean, that’s obviously for somebody smarter than me to explain.

Rick Bangs:

So you don’t have the shards with the combination of Noga and BCG that you did?

David McKenzie:

Oh, no, I still have them. I have. They’re just not as intense,

Rick Bangs:

Not as intense, not as intense.

David McKenzie:

Yeah.

Rick Bangs:

So we just want to remind our listeners that your mileage may vary on side effects as always. So Noga is FDA approved for patients with CIS, and I haven’t heard you mentioned carcinoma in situ or CIS, so I don’t believe you had that.

David McKenzie:

I don’t.

Rick Bangs:

You didn’t. Okay. So that means you received it what’s called off-label, and that is how some patients receive a treatment. So I’m sure our listeners would be interested to hearing more about what is off-label and how that works. How did it work for you?

David McKenzie:

Well, again, I’m going to try to not overflow the pee cup here. So essentially, when I was able to engage the Noga rep in Chapel Hill, I was able to put her in immediate contact with my urologist and pull the curtains back for Dr. Carmen Calleran. Almost get teary-eyed, pull the curtains out for Dr. Carmen Calleran at WakeMed because he got with the Noga reps, and he’s a brilliant doctor, but has kind of a blue collar work ethic to him, and he got to work on it.

And one of the things that was immediately something that we tripped on was the FDA approval. And the FDA approval is for non-muscle invasive bladder cancer with CIS. And I don’t have that. Apparently, I’m fortunate not to have it because I understand it’s a little bit more or a lot more aggressive, quite frankly. And so it set off this sort of healthcare ecosystem nightmare for me, because since it wasn’t FDA approved for just plain old, regular non-muscle invasive bladder cancer, that didn’t mean that the insurer was going to immediately pay for it and it was going to be more problematic. But that’s when Dr. Calleran really went to work, and he was able to… Apparently this Noga has a 72% increase in efficacy for BCG with CIS, and it’s 54% without CIS. And under what world would you not want a 54% approval to your odds? And so-

Rick Bangs:

Exactly.

David McKenzie:

He went to work on it and somehow persuaded the health insurer to cover it. Then it came back and it was sort of not approved and it was appealed.

Rick Bangs:

There’s a lot of paperwork involved.

David McKenzie:

There’s a lot of paperwork.

Rick Bangs:

A lot of paperwork.

David McKenzie:

I would’ve started chewing glass if I had to do this. But they stuck with it and they saw it through. I have to give Dr. Calleran and the administration that WakeMed who ultimately brought this thing home, because this is a, and I’m very mindful of this, this is an incredibly expensive drug and it’s probably too expensive. And as an intellectual property practitioner, it’s making me rethink the entire patent system and the utility and benefits of that with the public.

But I’m thankful to have it. And they were able to get it across the finish line for reasons I’ll never understand. It has something to do with these mendacious RVUs that Medicare signs or something like that, but they got across the finish line, it just has to be administered through oncology. So I’m not in urology where it’s being administered, and I’m grateful for the people in oncology, Dr. Strawberry and others that have brought this in across the finish line, but they got it approved. But really and truly, based on my understanding of the science behind this drug, this should probably be first line for everything. Because in what world would you not want 54% approval rates or 72% in the event of CIS? So we got it done. And so it is being used off-label and I hope it will continue to be.

Rick Bangs:

Excellent. Excellent. All right. So across your journey, you spent a lot of time going to and from the clinic, and a lot of patients can relate to that. And then you’re in the clinic, you get diagnostics treatment, follow-up. And I don’t think a lot of people recognize the implications until they’re in the thick of it. So somebody like yourself, you and I, we understand that, but talk about the time commitments and the impact on your personal and professional life.

David McKenzie:

I could not have foreseen how much time this was going to be was going to be involved in this until I was really knee-deep in it. I was going out to WakeMed today to do a simple urinalysis, and it occurred to me that I could become a pilot in 65 hours, and I’ve probably spent 65 hours going to do these, between watering up and going to do these urinalyses.

But yeah, when you factor in the surgeries, the testing, the treatments, and then the days of recovery, I never experienced days of recovery, maybe just half. But when you factor up all that time, it becomes really hard. And then when you add in reviewing medical literature, trying to get up to speed with the nomenclature, that’s foreign to me. When you get into all that time, it just becomes incredibly time-consuming. And that’s something I could have never foreseen.

And so I have not been able to maintain a full caseload in the wake of this. And I am kind of glad for that too. I still have done a number of cases. When you do intellectual property and media rights litigation, there’s deadlines and the law doesn’t care about your medical appointments. And so with the recurrence and everything else, I think that because you got to realize, even this week today, I went out and I did the urinalysis. It took not an entire day, not an entire morning, but it did take up a good bit of the morning. And tomorrow I will be doing the BCG with the Noga, and that’s going to take the entire day.

And then on Thursday, I will probably have some small side effects in the morning, but I mean, I can be expecting to have some urine discomfort probably through Friday. But two days, I think is fair to say, of your work week are already gone. And so it’s just been incredibly time-consuming. And then I would also add, and I don’t think this needs to be overlooked. There’s just a time that you spend waiting and the time that you are just sort of feeling the anxiety of what’s going to happen next and am I going to tolerate this well? Those kinds of things. So it is incredibly time-consuming. It’s not all-consuming, but it definitely has impacted every aspect of my life, and it probably will for quite some time.

Rick Bangs:

And it needs to be at the top of your list, so it’s not something you can just walk away from either.

David McKenzie:

Right.

Rick Bangs:

So BCAN’s played a key role throughout your journey, and we’ve already talked about the BCAN Walk. You actually listened to a podcast. So any other interactions you’ve had and what have these interactions meant to you individually or collectively?

David McKenzie:

Well, I think that the number one thing for me for BCAN would easily be just the reliable information. Any kind of cancer diagnosis is all-consuming, and it is, I don’t want to say it’s tragic, but it’s difficult and you want to be as informed as you possibly can. And the beginning especially, I was just Googling the universe and it was doing me no good. I spent a ton of time just reading what I could get my hands on. And a lot of it was stuff that was either premature, it was in early phases, it was just wasn’t good information.

But I came to learn that reliance on BCAN and its information is going to save me a lot of time. And it’s distilled, it’s good information, and it keeps me from wasting even more time on futile research, quite frankly. When I’m working out and in the gym or lifting weights or I’m running or something like that, I’ll listen to your podcasts. And I was doing that for a number of workout sessions and for a number of your podcasts. And so that has certainly been helpful. And the stories I think other people provide, this can be a double-edged sword, right? Because not everybody’s situation is equivalent.

Rick Bangs:

Correct.

David McKenzie:

My situation, quite frankly, is much better, and I’m mindful of that, of how good my prognosis may be, but I am 50 years old and it’s a little early for me to be getting this, statistically. It’s not actually not a little, it’s a lot. And to have fellow stories out there and to take comfort in people learning to live with this disease, this condition, I don’t know which one to call it. Probably both. Learning how to live with it, hearing the stories, and it’s put me on a path to trying to find a way to live with the uncertainty. And obviously then there’s also the story about the Walk to End Bladder Cancer in Chapel Hill and running into the gracious nurse practitioner who took the time to shoot me over to Noga’s rep too.

Rick Bangs:

Yeah, that was a fortunate interaction. That was really helpful.

David McKenzie:

Serendipity.

Rick Bangs:

Yeah. Yeah. So I heard you say you’re going and you’re getting another treatment tomorrow, but generally speaking, what’s the plan from here?

David McKenzie:

Medically, the plan is to do two more BCG’s with the Noga, and I will return for cystoscopy. It’s amazing. I mean, my bladder has more of a social life than I think I do. And so I get another day with another cystoscopy, and that will come at the regular interval. I think it’s six weeks. I think they’ve already scheduled it, I should know. So hopefully I’ll have a clean cystoscopy, and then we can just proceed with the regular cystoscopies and maintenance therapy.

Rick Bangs:

And they’ll all be clean too, hopefully.

David McKenzie:

Yeah, absolutely. So medically, that’s the plan. Professionally and personally, I’m just determined to pick back up on my caseload and just try to live life as if this didn’t happen, even though I know that that’s a bit aspirational.

Rick Bangs:

Right, right. So reflect on your entire bladder cancer experience up to today. What would you want other people to know, and what advice would you give?

David McKenzie:

Wow, obviously, as you said, starting out in this podcast, don’t ignore blood in the urine or discoloration. I mean, that’s just not something you ever do. I mean, I’ve learned that you never suspect runner’s hematuria. You always run urinalysis. I think it’s like a $10 test. So that would be one thing for certain.

Off the top of my head also, and I think this may be unique to my situation, and I’m mindful that there’s a lot of people out there who are listening to this that are not in the Research Triangle, that are in rural parts of North Carolina or other places, and they don’t have access to really fantastic medical centers. But I’ve learned from this that not everybody needs a Hopkins, a UNC, a Vanderbilt or Duke. Don’t overlook the extremely good people and high quality personnel that are at your Metro hospitals. I think some people like to call them community hospitals. That oftentimes you will get the best treatment there.

That’s something. I mean, I love going over to WakeMed. I mean, I’m telling you, I arrive there and I feel like somebody has cleared a parking lot for me because there’s always parking and versus Duke or UNC I have to fight I 40 and deal with the parking garage, and oh my God, I know that’s just so horrible for me to have to do. But no, it’s easy. And I mean, I show up there and they have my pea cup ready and I’m like, “Oh, sweet, Jesus, I got to go.” And I just have learned from this that you don’t always have to go to those major medical centers and the like that oftentimes the best quality and best care you’re going to get are the very well-informed and equal doctors at your so-called community hospitals. That would be another thing.

And then obviously support systems. I mean, I can’t say enough about that. My longtime partner and girlfriend has been with me at every single cystoscopy, every BCG treatment, every urinalysis, and she’s an extremely busy person and has a lot of responsibility on her plate. But that has been incredible. And then finally, laugh. I mean, you can never get enough of laughter and make fun of yourself. Find a way to laugh, find the humor in it. It’s there. And I definitely would recommend that.

Rick Bangs:

Yeah, that’s great advice. All right, any final thoughts?

David McKenzie:

Well, the only thing I think I would say in conclusion, I mean, I guess there’s two things. One, I think this is where I guess my experience as a marathon runner does come into play, and I know you’ve had a lot of marathon runners on your podcast, Rick, but this is a situation that is never really going to be over. And I may have some clean cystoscopies, but this is the kind of disease that just sort of is always over your head.

And as I’ve shared with other, it’s kind of like walking around with a piano over your head and learning to live through grace with the unpredictability of it. It’s hard, but it’s something that can be done. I know I think I’ve shared with, I have disdain at the moment, maybe I’ll change my mind on this, but I do have great disdain for the word survivor because it’s not really like that or just doesn’t really fit.

And I’m very mindful, very, very mindful that there are people who have not survived this disease. So I’m just a part of the group. And then the final thing is it’s just like you cannot put words to how invasive all of it is. And I know that for medical professionals out there, that they deal with the human body every day, and it’s probably no big deal to them. But I mean, there really is very little dignity involved that you can have at the end of this. And I would certainly encourage medical providers to be really sensitive to that. I mean, this is a hugely embarrassing thing, but for those who are out there possibly listening to me, you’re not alone, and though it is a deeply humbling experience, you may never get used to it. You’re just not alone.

Rick Bangs:

All right. That’s a good way to end it. All right. So David, I want to thank you for giving us an understanding of your unique experience, getting a second opinion, and receiving a new treatment called Noga, and dealing with the considerable time commitments that a bladder cancer journey requires.

David McKenzie:

Happy to. Thanks for having me on.

Rick Bangs:

Our pleasure. If you would like more information on bladder cancer, please visit the BCAN website www.BCAN.org. In case people wanted to get in touch with you David, could you share an email address or a Twitter handle?

David McKenzie:

Oh, sure. You’re welcome to email me. I’m at David@McKenzielaw.net. That’s M-C-K-E-N-Z-I-E-L-A-W.net. I also have a Twitter handle, believe it or not. I mostly tweet about the intersection of sports and the law, but that’s @McKenzieLaw, M-C-K-E-N-Z-I-E Law. And you can find me on Twitter sometimes, or X as it’s called now. Sometimes I’ll tweet out about some bladder cancer stuff and it can be funny at times.

Rick Bangs:

Oh, okay. We’ll look forward to that then. Just a reminder, if you’d more information about bladder cancer, you can contact the Bladder Cancer Advocacy Network at 1 (888) 901-2226. That’s all the time we have today. Be sure to like, comment, and subscribe to this podcast so we have your feedback. Thank you for listening, and we’ll be back soon with another interesting episode of Bladder Cancer Matters. Thanks again, David.

David McKenzie:

Thank you.

Voice over:

Thank you for listening to Bladder Cancer Matters, a podcast by the Bladder Cancer Advocacy Network, or BCAN. BCAN works to increase public awareness about bladder cancer, advance bladder cancer research, and provide educational and support services for bladder cancer patients. For more information about this podcast, and additional information about bladder cancer, please visit BCAN.org.