Transcript of “Alan: My Life as a Bladder Cancer Survivor”

November 14, 2023

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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, Alan Lifton.

Alan is a survivor of muscle invasive bladder cancer, and he had a radical cystectomy in 2020. He chose an ileal conduit as his diversion. During his professional career, Alan was a full-time, full professor of tv, film, and video working in colleges and universities in the US, as well as spending more than six years overseas in England, Scotland and Fiji in various academic capacities.

He was also a freelance producer, director, camera operator, and steadycam operator, and produced about a dozen documentaries for the PBS local and national system directed sports event for several universities. Shot some corporate and commercial steadycam and trained dozens of steadycam operators.

Alan and his wife Susan, just celebrated their 50th wedding anniversary and they live in Vancouver, Washington. Alan, thanks for joining our podcast and congratulations on your anniversary.

Alan Lifton:

Yeah, thanks for inviting me. Yeah, Susan’s a very brave and stoic woman. 50 years with me.

Rick Bangs:

Okay, good. All right, so your path to a bladder cancer diagnosis, a little bit unusual, but I think people kind of relate, because some of us don’t get here through a clean path. So what were your symptoms and how did your diagnosis come about?

Alan Lifton:

Right. Well, this will take a couple of minutes if I’m allowed to do that.

Rick Bangs:

Oh, absolutely.

Alan Lifton:

In about 1980, I was diagnosed with an autoimmune condition called Reiter’s Syndrome. R-E-I-T-E-R-S. Reiter’s is a triad of three symptoms that typically occur independent of each other and are treated just as symptoms and it’s arthritis, urethritis, and iritis. And so when my eyes burned, I put some drops in my eyes.

When my joints hurt, I took some ibuprofen and when it hurt to pee, they gave me some antibiotics, and that typically made things better. When all three of those things happened at once, as it did when I was diagnosed with that, I wound up in the hospital. So it’s been almost a non-entity for me for most of that time since I was diagnosed with that. And so in April of 2020, my back started to hurt and it was burning to pee. So I went to an orthopedic doctor to have him take a look at my back and he couldn’t find anything with my joints back there.

And he suggested… Right, he suggested that I go to a rheumatologist to find out what’s going on, why it’s burning to pee. And this person couldn’t find anything wrong, really. But she did suggest that they take a urine sample and find out what was going on inside the urine, and they found microscopic traces of blood in my urine, which prompted this incredibly fast and competent rush to find out what the hell is going on.

So I was immediately seen by a urologist, the local urologist, Dr. Jason Smith at the Vancouver clinic, and he said, “We’re going to have to do a cystectomy and it’ll take 10 minutes and we’ll be able to tell exactly what’s going on with your bladder and why you’re burning to pee.” So I didn’t know what a cystectomy was. Cystoscopy. Yeah, cystoscopy, yeah. So I said, “Yeah, sure, let’s go.”

Rick Bangs:

So you didn’t have to make an appointment for the cystoscopy? You’re having it right on the spot?

Alan Lifton:

Yeah, he was pretty concerned. Yeah.

Rick Bangs:

Wow.

Alan Lifton:

Yeah, so we did it and man, it was the least fun I’ve had in a long time.

Rick Bangs:

I think a number of us relate to that statement.

Alan Lifton:

Oh, man. He goes, “You going to feel a little bump.” And it felt like something was going to come flying out my throat here in a minute. Then he goes, “Okay, so we’re past your prostate and now we’re looking at your bladder.” And he turns this TV monitor around and I’m looking at the inside of my bladder and I thought, “Wow, that’s remarkable.” And he’s turning the camera around a little.

There’s this big red lump sitting on the wall of the bladder, and he goes, “Well, that’s not looking good. That’s a tumor, and we’re going to have to take that out and we’re going to have to take it out as soon as possible.” And I said, “Terrific. When do you suggest?” And three days later I was in the hospital being put to sleep and having this, I think it’s called a TURBT, T-U-R-B-T. Yeah.

Rick Bangs:

That’s right. That’s right. Three days later.

Alan Lifton:

Yeah, yeah, yeah.

Rick Bangs:

You’re on the fast track, diagnostic fast track. You had your cystoscopy the same day you went to the urologist, and then three days later, I mean, this is a miracle trajectory.

Alan Lifton:

I know. I was pretty flabbergasted, actually. Kind of scared too.

Rick Bangs:

Of course.

Alan Lifton:

So when I woke up, I was in the recovery room and the doc says, “Listen, I just inserted through this catheter one dose of…” It was chemo, and I can’t remember what it was. If I heard the word, I would remember it. I think Mito…

Rick Bangs:

Mitomycin.

Alan Lifton:

Yeah. Yeah, that one.

Rick Bangs:

Yeah, that one.

Alan Lifton:

He says, “We just inserted that it needs to live in you for about 45 minutes, and then we’ll drain it, but we’re going to send this tumor out and it doesn’t look good. It’s cancer, and we need to find out what kind it is.” And I’m laying there and I’m still groggy. I don’t know the is going on and my wife is with me now.

I’m going, “Oh, man, cancer, just, what else?” And the pathology comes back with three different types of cancers. It’s micro papillary. Let’s see, what was the terminology? Muscle invasive micro papillary carcinoma. And then there’s also CIS, cancer in situ and then there was also prostate cancer. I go, “Holy crap, what is going on here?”

Rick Bangs:

So they knew you had prostate cancer when you had your T-U-R-B-T?

Alan Lifton:

Yeah. Well, when they took out the tumor, they were able to do the pathology on it right there. And he says, “We need to sit down and talk about what your options are.” And he says, “This is a fixable situation, but it’s a pretty radical fix, and here are your options. One option is to do nothing, and if you do nothing in a year, you’re going to be dead. Another option is to do a series of BCG treatments.”

“There’s no guarantee that the BCG is going to work, and if the cancer is spreading, which it’s likely to do, it’s going to go to your lungs and it’s going to do lung cancer. And lung cancer is no picnic. And the last thing we could do, which is what I would recommend he said, is to remove your bladder.” A week ago, I’m looking at this guy who’s going to stick this pipe up there, and now he’s telling me he’s got to take my bladder out.

Rick Bangs:

Right. So you think you’re back in the Middle Ages or something?

Alan Lifton:

Yeah. So it didn’t take much to convince me that my bladder needed to be removed. So I said, “Okay, let’s go.” I said, “When?” He goes, “As soon as possible.” And he started talking about a six-week window. Apparently the docs around here to get this micro papillary stuff out as soon as possible.

Rick Bangs:

Yeah, that’s kind of a universal thing because micro papillary is very aggressive form of bladder cancer.

Alan Lifton:

That’s what he said. So he said he didn’t do that kind of work, because he’s just the local guy. And so he and my GP, general practitioner, both recommended the same guy, a guy named Dr. Christopher Amling, the head of oncological urology at OHSU, Oregon Health Sciences University.

Rick Bangs:

That’s in Portland?

Alan Lifton:

Yeah, it’s in Portland, which is 15 minutes from where I live.

Rick Bangs:

Okay.

Alan Lifton:

And so I was able to convince Dr. Amling to see me. We spent, I don’t know, maybe an hour, hour and a half. This is right in the middle of COVID, by the way. So we spent about an hour… Right, of course.

Rick Bangs:

We’re going to come back to that.

Alan Lifton:

Yeah, we are. So we spent about an hour and a half on a video visit and he explained everything he thought I needed to know, and we set a date, and the date was June 23rd, 2020.

From the point that we set the date to the point that the surgery was going to happen, I learned about BCAN, I learned about Inspire. I got back in touch with, my youngest son had bladder cancer, believe it or not. And so he and I chatted quite a bit about this. He turned me on to his cancer doctor up in Seattle, Dr. Jonathan Wright. And so the wheels were turning, it was happening.

Rick Bangs:

Wow. Okay. So risk factors. Did you have any risk factors?

Alan Lifton:

That’s what all the docs asked.

Rick Bangs:

Of course.

Alan Lifton:

Yeah, of course. When I was a kid, I smoked cigarettes from the time I was about 15 until my first son was born. And that was 48 years ago. So I smoked for about maybe less than 20 years, I think. Well, maybe more than 20 years, I guess. But I hadn’t smoked cigarettes in 48 years. But that’s the only risk factor that I knew of.

I’d been smoking, I’m a child of the sixties, come of age in the sixties, so I’m very familiar with weed and I’ve been smoking weed fairly regularly. But everybody I’ve spoken to, both in the medical communities and online communities have indicated that’s not a risk factor for bladder cancer. I don’t know what else could be, honestly don’t know.

Rick Bangs:

Yeah. Yeah. And there’s usually a lag between… If you stop smoking, there’s usually a lag to the bladder cancer diagnosis if it does happen. So that part’s not unusual. Okay. So you mentioned your son, and I believe there’s another family member that had bladder cancer. So tell us about your son.

Alan Lifton:

Okay, so Zach is 43 now. He’s a geologist and he was studying for his PhD at Georgia Tech in Atlanta. And he was doing a lot of lab work there and he saw blood in his urine one day and he kind of freaked out, went to his local urologist, and the urologist said, “Don’t worry about it. It’s probably a UTI, so take these antibiotics and be on your way. You’re way too young for anything else.”

Rick Bangs:

Right, of course.

Alan Lifton:

So Zach took the guy’s word for it and did what he had to do. He finished his degree, got his job, and he wound up working in Seattle. And we lived in… Well at the time we still lived, I guess, in southern Maryland and the blood in the urine didn’t go away.

So he went to see Dr. Wright and Doc did all these tests and came back with a non-muscle invasive stage one bladder cancer. And he was at very minimal risk, apparently. They did two TURBTs with Zach, and I think he said 14 or 16 episodes of BCG. And they got everything. And he’s nine years clear now and he’s doing great.

Rick Bangs:

So he was way before you?

Alan Lifton:

Oh, yeah. Yeah. Nine years ago, almost 10 years ago now. And I’m three and a half years out.

Rick Bangs:

Right.

Alan Lifton:

And then in the process of me coming to terms with what was happening to me, I have many, many former students of mine I’m still in touch with. And so I sent a mass email out to them on some Facebook groups that I’m on. And one of my cousins, she’s my first cousin’s daughter, her name is Susan, and she is about 55, maybe 57. She got in touch with me and said, “This is really weird, because I had bladder cancer in 2017.”

And she talked a little bit about it, not much, and she’s doing okay. She had BCG treatments and she seems to be doing fine. So three of us in the same family, all on my dad’s side, because Susan was on my dad’s side, all have bladder cancer. When I mentioned that to Dr. Wright, I see him almost every year during the Seattle BCAN walk.

I drive up there and I meet Zach there, and Dr. Wright’s there and we talk, he was very interested in doing some genetic studies on why three people in the same family have bladder cancer, haven’t heard back that he’s discovered anything. But he says, “Oh, that’s interesting. Let’s research that.” As doctors might say. So I guess he’s researching it, I don’t know.

Rick Bangs:

Yeah. Dr. Wright has a role to play relative to the Seattle walk, so that all makes sense.

Alan Lifton:

Yeah, he’s a pretty good guy too. I like him.

Rick Bangs:

Oh, he’s a tremendous guy. Tremendous guy. BCAN supporter. So all right, so you had the radical cystectomy and you chose the ileal conduit. So talk about the treatment side of the house and then we’re going to talk about your choice of urinary diversion.

Alan Lifton:

What do you mean when you say treatment side?

Rick Bangs:

Well, yeah, I mean you had the radical cystectomy, so how did that all go?

Alan Lifton:

Well, Dr. Amling and Ashley Olson, his PA and their resident, a woman whose name escapes me, performed an eight-hour surgery at OHSU and I woke up and my life was different. It was just change. A lot of pain.

My wife was there when I woke up and she said I started screaming, I don’t remember it at all. So they put me back to sleep for a short while until they could figure out why. And apparently there was this gigantic gas bubble, so I had to get rid of that and it was really painful stuff.

Rick Bangs:

Oh, okay.

Alan Lifton:

Yeah. And everything at that point, I thought everything was fine. Nurses and doctors kept popping in to tell me what was happening with me. And a stoma nurse came in and showed me the new hole in my body and the cherry that’s sticking out of it, and I’m still half asleep and drugged, so I’m trying to figure out the hell’s going on here. I got home, I guess, four days later. One of the things that everybody has to do who goes through this surgery is they have to walk a lot and it helps the digestive system all about this.

So it turned out that… Remember earlier I talked about my back was hurting. Well, it turned out that what that was is a pinched nerve in my lower back, which prevented me from walking more than, I don’t know, two minutes at a time. And so doing laps around the hospital was a non-starter for me, because I couldn’t walk very well.

So my whole recovery process took longer than it should have until I was able to get in to see the neurologist who did a very brief surgery on my back, which fixed… He untrapped that nerve and then I was able to start walking normally and recover as efficiently as possible.

Rick Bangs:

Did you know it was a pinched nerve causing this at the time you had the radical cystectomy?

Alan Lifton:

No.

Rick Bangs:

You didn’t know?

Alan Lifton:

No.

Rick Bangs:

You just knew it was a problem.

Alan Lifton:

Yeah.

Rick Bangs:

Oh, wow.

Alan Lifton:

Yeah. It really sucked.

Rick Bangs:

Yeah, I think that’s an understatement. Okay, so you had a choice of diversions and you chose ileal conduit, so what were your considerations there? And would you make the same decision again, et cetera?

Alan Lifton:

The short answer to the second question is I would, yes, make the same decision again. For me, it’s the right thing to do. I went online to inspire and spoke to a lot of different people, both publicly on their chat boards and privately in private messages and phone calls. And well, the two things that I came away with were that with a neobladder… You have a neobladder, don’t you?

Rick Bangs:

I do. 2006 model year.

Alan Lifton:

Yeah, man. Okay. So what I was told, I’m 76 now, and I was 72 at the time. And so what I was told was that you got to develop your kegel muscles to be strong enough to control the flow and the stoppage of the output. And as I was getting older, I’m thinking to myself, I’m not going to have the same control over my stomach muscles as I might if I was 40 or 50. And I say that with a bit of history in that I was very athletic when I was pre-cancer. I held two amateur racquetball titles, state titles, I ran a lot.

I was very active. And so I was pretty confident that I wouldn’t be able to develop the muscles I needed as I got older and maintain that muscle tone. So that was one thing. The other thing was almost everybody I spoke with and read about had to catheterize themselves, some people more than once daily. And I got to tell you, I’m not a fan of catheterization for myself. So for me, that was the deal breaker. So I have a-

Rick Bangs:

Just to be clear, none of us are fans of that going in or coming out.

Alan Lifton:

Right. So if you don’t mind my asking you, do you catheterize yourself?

Rick Bangs:

No.

Alan Lifton:

No?

Rick Bangs:

No. I think it’s not the norm as I understand it, and I have to say I’m not a doctor, but not the norm. But it is something, if you’re going to have a neobladder, you have to be prepared for the possibility it can happen that you need to.

Alan Lifton:

Right.

Rick Bangs:

All right? And so I did self cath. In fact, in some institutions they require you to go on a trial run before you have the surgery to confirm that you can and would be willing to do it.

So I have done it. They weren’t doing it at UMich when I went there. But anyway, so after the fact though, I was required to do that in part because of some saline irrigation you have to do to remove some mucus and so forth and in part to just make sure that things were flowing right and everything.

So I’ve done it. Going in, I was not sure that I was ever going to be able to do it, but they teach you how to do it and it’s mind over matter, so you figure it out. But it’s certainly not my favorite activity.

Alan Lifton:

Yeah. Well, my legs clamped shut when you said you had to do saline washes.

Rick Bangs:

Yeah.

Alan Lifton:

Anyway, so those two factors were the determining factors in what kind of diversion I got. So I got the [inaudible 00:20:17], I got this bag attached to my body 24/7 and I’m used to it now. I hardly ever think about it unless there’s a problem and there’s a problem every three or four days when I got to change it.

And every once in a while, maybe once a year now, even if that much, there’ll be a slight leak and I catch it as quickly as I can and do what I have to do to make the leak go away. So I’m okay with it. It doesn’t bother me that much. It’s part of my routine now.

Rick Bangs:

Sure, sure. Okay. So you mentioned, so people who are listening will remember that you said June 2020. So we all remember this is a pretty scary time for COVID.

Not that it wasn’t scary, but a particularly scary time because we don’t have vaccines, we’re still struggling with knowing what’s going on, masks aren’t freely available, all that stuff. So what does COVID do to your particular journey?

Alan Lifton:

Two things about that. During the first major surgery, the eight-hour surgery, my wife couldn’t come with me. My son couldn’t come with me. I was basically alone. And all these people are walking in and out of my room with masks on, so I couldn’t even identify them in the street. I have no idea who they were and it was scary. I got to admit I was terrified. I had no idea, there was nobody there advocating for me. I did all my own advocating when I could.

When I was lucid. Post-op, my oldest son, Josh, bless his heart, would come and visit, but my wife couldn’t. She was having her own issues with her knees needing to be replaced. And so she went through two total knee replacements in the last two years. So it was a difficult time for us and COVID made it worse. And then we didn’t talk about this yet, but I had to have a resection six months later.

They had to open me up, gut me like a fish and redo a bunch of stuff inside, and I’ll talk about that in a minute. But the hospital that I was… It wasn’t at OHSU where I wound up with these infections that I was getting. And because COVID was such a prevalent condition around here, COVID patients took up much of the hospital beds.

Rick Bangs:

Of course.

Alan Lifton:

Which led them to put me on the… I don’t know if it was a mental health ward or not, but people were howling and screaming all day, all night, everywhere around me, cops were coming and going and taking people away. It was just a horrific eight days worth of the ninth level of hell, quite honestly.

Because I had no idea what was wrong with me until one of the docs stuck a catheter in the stoma and they came out with a nasty little kidney disease that was just about ready to kill me. And so they were able to fix it. But the COVID issue again, made it a very unpleasant stay at this hospital. So I’m looking up and going, “What in the hell did I do wrong to deserve all this crap?”

Rick Bangs:

Right. So didn’t the medical team tell you that you wish you’d known in advance?

Alan Lifton:

Yeah. Boy, that’s a really good question. One that I talk as a, Survivor to Survivor counsel, I to the guys about this. The doctors don’t tell you… What the doctors do tell you is the medical jargon. They tell you what they’re going to do to you and how it’s going to work and they give you all the risk factors and the scientific studies and all the good stuff that doctors need to know to do their jobs, which is great.

What they don’t tell you is how this is going to impact your life. The docs don’t tell you the emotional impact this has on you. I looked in the mirror when I got home and I saw this Frankenstein monster staring at me with holes, puncture wounds and the bag and tubes sticking out. Go, “What in the hell is happening to me?” And they don’t talk about that. They don’t discuss it.

Rick Bangs:

Right. They cover the technical details because that’s… Right?

Alan Lifton:

Yeah. They don’t talk about how difficult it might be to learn how to change your bag out. And what this goop that comes out of the bag really is. The first time I saw all the mucus about, “Oh, shit. I’m dying.” And apparently it’s normal. And they could have told me that.

I mean, all these little things that they take for granted because they see it all the time is brand new to patients and patients need to know about this and maybe BCAN can advocate for somebody on the hospital staff to be able to talk to patients about this. I don’t know.

Rick Bangs:

Yeah, I know there’s some good resources on the BCAN site and there’s been some web conferences and so forth where folks like myself or you have kind of shared the experience. But yeah, there’s surprises along the way. It’s just…

Alan Lifton:

Oh, boy. No kidding.

Rick Bangs:

Yeah, and they’re usually not the pleasant kind of surprises.

Alan Lifton:

Really. The first, I don’t know, couple of months I changed my bag and when I take the bag off, there’s blood around the opening. I’m going, “What’s this all about?” And it turns out the opening for my bag was too small, it was cutting in.

And occasionally the first couple of months there’d be these globs of what looked like… Well, it was blood, like scabs broke off somewhere, got into my bag and got expelled. I go, “What is that?” They don’t tell you about that. Well, maybe it was just me. Maybe it was just the hospital there, but nobody told me anything about that.

Rick Bangs:

No, no. There’s always surprises. Even the best places, the ability to give you the full picture, it’s really hard. I think some places are better than others, but that’s why this whole patient perspective is so important and why the work that folks like BCAN do is so important.

That’s the flip side of this. And those are the kinds of things that patients need to hear so that they can be prepared and then know what to do when they’re experiencing some of these things, some of which are quite normal, but they weren’t expecting.

Alan Lifton:

Yeah. Well, here’s something that’s real interesting, I thought, which sort of speaks to this. After the surgery, I had to wait for the pathology report to find out if they got all the cancer. So they take lymph nodes out and that’s what needs to be addressed. So I’m sitting… This is the day after, right? I’m sitting in my chair in the hospital room and in walks the woman who was the chief resident. I’m sorry, yeah, I guess resident.

She was ready to go out on her own, the final year student there. And she came in to give me the pathology report and she’s fully gowned and she’s got her mask. And she sits down on the end of the bed looking at me and she just starts talking about all of the sizes of the tumors and all the technical jargon that doctors do. And I’m looking at her, I go “What? What?” And then finally 10 minutes later, she goes, “Oh, and by the way, we got all the cancer.”

Rick Bangs:

Which is probably what she should have have led with.

Alan Lifton:

That’s right. And I said, “Damn it, you could have led with that. Don’t bury the lede on people like me sitting here dying, wait to hear the good news or the bad news and you come in and give me 10 minutes of tech talk and I don’t care about that.”

Rick Bangs:

About that data. You wanted the interpretation. You don’t have any feel for whether a one or two centimeter tumor with these kinds of characteristics. You don’t know what that means. You want the interpretation.

Alan Lifton:

Right. I don’t want to build the car. I just want to turn the key and start it and drive away. Right?

Rick Bangs:

That’s right. That’s right.

Alan Lifton:

So interestingly enough, she was also there in January of 2021 when they had to do a resection and she came in again to tell me about it.

And she was all smiles and she had actually had a learning experience. She took away from our first meeting that you need to walk in with a smile on your face and talk openly about what they found. And she did, and it was great. I said, “Thank you for doing that.”

Rick Bangs:

Excellent, excellent. Okay, so I want to talk about BCAN. So early, you found them pretty early. Did your son find them first or did you find them first?

Alan Lifton:

That’s a good question. I think Zach knew about them through Dr. Wright.

Rick Bangs:

Yeah, because he’s a big BCAN supporter.

Alan Lifton:

But I also found out, and the timeline here gets a little confusing for me, I found about, through Inspire also, and a couple of the guys that I spoke with, were still friends actually. I mean, this guy named Don. Don and I talk and write regularly to each other.

It turns out he was at the same hospital I was a week later, and he had the same staff and the same crew, and we followed our recoveries together and he’s doing great. And so he was involved in BCAN and through a couple other guys, I got involved with them.

Rick Bangs:

So Inspire, for those that don’t know, Inspire is the online web forum that BCAN hosts through Inspire. And there’s over 50,000 members. I don’t know if you know that, but there’s over 50,000 members. And it’s just an incredible resource. And I think people are very helpful and very willing to help and answer questions and yeah, it’s a wonderful resource.

Alan Lifton:

Yeah. Yeah. You know what I’ve noticed, just a plug for BCAN here. In the last, I don’t know, two years, I think they’ve stepped up their game and have become really a much stronger advocate for us.

The materials that they have, that they send to people and that’s online at their website, is just spectacular. It’s really excellent stuff and I can’t say enough good stuff about them.

Rick Bangs:

Yeah, great resources. So you found Inspire. I heard that. And you saw resources online. I assume that they may have been helpful to you.

Alan Lifton:

Yeah, they were. Probably the most helpful, I think, was talking to other guys, the people that…

Rick Bangs:

Yeah, that’s big.

Alan Lifton:

Yeah. That recently had the same surgeries I had. We sort of commiserate and answer each other’s questions. I’m not really sure how I got involved with S2S, quite honestly. But when I got involved with them, it gives me the opportunity to talk to other guys who had the same exact feelings I had before my surgery and immediately after the surgery.

Rick Bangs:

So S2S is shorthand for Survivor to Survivor and it’s a matching program, right?

Alan Lifton:

Yeah.

Rick Bangs:

So every attempt is made to kind of match you as a patient or a caregiver or whatever with somebody who’s like you. So if you have an ileal conduit and dah, dah, dah, you’re in a diagnosis, they try to find somebody that’s in that space.

Alan Lifton:

Yeah.

Rick Bangs:

And at some point you found somebody local?

Alan Lifton:

I did.

Rick Bangs:

That’s awesome.

Alan Lifton:

Yeah. I won’t mention his name, because privacy issues, but he lives about 25 minutes from me and we together for lunch about once a month. We’re both deaf.

Rick Bangs:

Deaf in the same ear?

Alan Lifton:

Yeah. So we need to find someplace quiet to eat. Right? That’s the biggest problem is finding someplace quiet. And we sit down and we touch base, we talk about how we’re doing and we talk about family health issues and what’s next on the agenda. It’s very helpful. I mean, I assume it’s helpful for him, but it really helps me a lot.

Rick Bangs:

I’m sure. I’m sure.

Alan Lifton:

Absolutely. And having a kindred spirit so close by is terrific. And the guy that had the surgery the same week or the next week as I did, he lived in Bend, Oregon, which is just three and a half hours from here.

And one time he and his wife went camping and they wound up about a half hour from where I lived. So Susan and I jumped in our car and we met them at the campground and we hugged and cried and ate and it was great. It was terrific.

Rick Bangs:

Wow. That’s neat that these people are also so close, because the United States is a fairly large country, and there are some… It could have been somebody from Hawaii, let alone Portland, Maine or something.

Alan Lifton:

Yeah, well if you want, there’s a few more little stories. There’s one guy I met as an S2S counselor, and he’s lived in this country for 30 years. He’s down in LA and he’s a funny guy. And we still talk to each other about once a month. And then there’s another guy who’s also foreign to the US. He’s lived here for more than 25 years. Anytime either one of those guys has a question or a problem or just wants to chat, we get together and we giggle.

And oftentimes, it’ll be a FaceTime. The guy down in LA goes, “How do you do this?” And so I take my iPhone, bring it into the bathroom and show him a picture, live video of my stoma. And I say, “Look, this is what I do.” And I show him this stuff and, “Oh, so that’s how you do that.” And we giggle and laugh and we try and make the best of a not very good situation.

Rick Bangs:

Awesome. Awesome. Okay. Any final thoughts you want to share?

Alan Lifton:

Not off the top of my head. I think I went through about a dozen procedures during the course of… From diagnosis till this very moment. And I think the docs need to suggest to people that it’s not a one and done all the time. They don’t cut you, take your bladder out and you’re better.

There’s all sorts of issues that occur, that pop up over time, and you need to be aware of it and always on guard. But I am very grateful to the docs. Yeah, they did a great job. And to BCAN. To BCAN for all the support. Good grief. I hope it’s okay for me to say Bernadette Fitzsimmons’s name because she’s in charge of-

Rick Bangs:

Sure.

Alan Lifton:

Yeah. She does a great job with Survivor to Survivor and I’m looking forward to meeting her.

Rick Bangs:

Yeah, BCAN has amazing people. Amazing people. So Alan, I want to thank you for giving us an understanding of your journey as a bladder cancer survivor and some of the twists and turns that your experience has taken.

Alan Lifton:

Well, thank you.

Rick Bangs:

Oh, and sharing the Survivor Survivor program I think is so important, so I appreciate that as well.

Alan Lifton:

You bet. Thanks. Thanks for having me.

Rick Bangs:

All right, if you’d more information on bladder cancer, please visit the BCAN website, www.bcan.org. All right. In case people want to get in touch with you, could you share your email address or some other contact information?

Alan Lifton:

Sure. Yeah, you bet. My email address is stickball, S-T-I-C-K-B-A-L-L, like the street game, @gmail.com.

Rick Bangs:

Excellent.

Alan Lifton:

Yeah.

Rick Bangs:

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 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, Alan.

Alan Lifton:

You’re welcome. Thank you too.

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, advanced 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.