Transcript of “Back to Life: Frank’s Radical Cystectomy Recovery”

June 4, 2024

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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, Frank Sadowski. Frank is a survivor of muscle invasive bladder cancer with a 2007 model year neobladder. Frank was an English and journalism major at the University of Delaware and served as the features editor of the university’s newspaper, The Review, for two years. He has worked in the consumer electronics industry in many different capacities for over 40 years, and currently is self-employed as a business consultant specializing in ecommerce. He is also the author of Back To Life, which describes his journey as a bladder cancer survivor. He pens a highly entertaining eclectic blog, Frank-Incensed, at F-S-A-D-O-W-S-K-I, fsadowski.blogspot.com. He’s an avid cyclist, which figures large and back to life. Frank lives with his wife, Laura, in Portland, Oregon and Las Vegas, Nevada. Frank, thanks for joining our podcast.

Frank Sadowski:

Well, thank you very much for having me. It’s an honor to be on your podcast. Appreciate it.

Rick Bangs:

We’re pleased to have you as well. So I want to start with your diagnosis and treatment just to kind of set the stage here. So, when were you diagnosed and what were your symptoms and what treatments did you have?

Frank Sadowski:

I was diagnosed the last day of October 2007. The symptom was as a great majority of bladder cancer veterans find out, it was blood in the urine. My case was rather unusual in that I had had my annual physical that morning, including a urinalysis, a microscopic urinalysis. I had gone to the gym and rode a spinning bike for 90 minutes and when I got home, I was very dehydrated, drank a bunch of water, and I went to the bathroom and nothing came out. I pushed hard and the toilet was splattered with bright red blood. So it wasn’t like a little bit of blood, it was a lot of blood. Went to the emergency room, they did a CT scan. They saw a mass and put me in an ambulance and took me to the hospital in downtown Seattle. We were living in Sammamish, Washington at the time, about 20 miles east of Seattle. The next morning the doctor on duty came in and looked at the scans and said, “You have bladder cancer.” And then the treatments started from there.

The following week, I had a TURBT, I’m sure you know what that is, T-U-R-B-T, transurethral resection of a bladder tumor, and they discovered much to their surprise, that it was not muscle invasive at that point. It was a T1 grade 3, and they sent me home with that diagnosis. And being a cancer veteran of sorts, my wife is a breast cancer survivor, had surgery, and I worked for six years with the Lance Armstrong Foundation, which is now called Livestrong as a regional mentor, so I was pretty fluent in cancer. Was on a lot of discussion boards and everything at the Ride for the Roses, which is Lance’s annual event in Austin, Texas.

So I started doing research and I discovered what most people do in this mid-grade cancer, bladder cancer, that there are two radically opposed schools of how to treat it. The East Coast or Sloan Kettering School, which is called the bladder-sparing school, they postulate you should do everything you possibly can before having a radical cystectomy. And then there’s the West Coast or USC Norris School, which says if you have T1 grade 3 or higher, get rid of your bladder immediately. So I did all that research and came to the very tough decision to have the neobladder surgery.

Rick Bangs:

Wow.

Frank Sadowski:

Which happened on December 21st, 2007.

Rick Bangs:

Which is why you have the 2007 model year, one year later than my own.

Frank Sadowski:

Yes.

Rick Bangs:

So now you’re going to have this pretty major surgery. What kind of preparation did you have and after you got through the preparation, what’s your state of mind the morning of the surgery?

Frank Sadowski:

That’s a great question. I was very, very happy with the preparation. I had the surgery done at Oregon Health and Science University here in Portland, and my surgeon was Dr. Daneshmand, who you know well, one of the most accomplished bladder cancer doctors in the world. And he had his head nurse, surgical nurse, his name was Mark Johnson, and he was wonderful. He’s very, very gentle, knowledgeable, great bedside manner, and he and Dr. Daneshmand put together an eight-page, single-spaced summary of everything that was going to happen in the surgery and for the months afterwards. It was very comprehensive, and to be honest, it was quite frightening.

Rick Bangs:

Well, I can imagine. And at that time, in 2007, an eight-page, single-spaced document like that was very unusual.

Frank Sadowski:

Yes, and it really had me prepared. And you asked about the morning of the surgery. As I documented in the book, I was so calm. I called it preternaturally calm. I had no angst, no trepidation, no regrets. And I kind of just walked in there with a smile and said, “Let’s do it.” So I don’t know, I wasn’t expecting that, I expected to be super nervous and I really wasn’t.

Rick Bangs:

I think I made up for you though. So I think that’s great, but probably a little unusual. That’s interesting.

Frank Sadowski:

Yup.

Rick Bangs:

All right, so you’ve written this amazing book that details your bladder cancer journey, and again, it’s called Back To Life. Why did you decide to write a book?

Frank Sadowski:

Well, the origin story on the book, I think your listeners might find fairly interesting. I write a blog, as you mentioned in the intro, and I have a lot of followers. I’ve been a writer my whole life. And five years to the day after my surgery, I wrote my first and only blog post finally publicly for the first time, talking about the fact that I had had cancer. I had just spoken with friends and family about it up until then. Dr. Daneshmand had told me that the five-year mark was essentially critical. My survival chance, ten-year survival chance was estimated at 38% coming out of the surgery. At the five-year survival point, the ten-year survival percentage went to better than 80%. So I felt pretty safe in writing about it.

So in my typical semi-snarky fashion, I opened up by saying, “This is the first time I’ve written about this.” And it’s a short blog post, but it could easily be, the whole story could easily be a very long essay or a very short book. And to my surprise, I was literally deluged with comments from my readers who said, “You’ve got to write this story.”

So I contacted Dr. Daneshmand and I ask him about it and he gave me what to this day is a very interesting fact. He said there are thousands of books written about cancer, there are hundreds and hundreds of books that have been written about bladder cancer. There has never been a book specifically describing and taking you through the timeline of the process of neobladder surgery. So it was truly the first book of its kind. And I, again, in my semi-snarky fashion, I said, “I’ll do it on one condition, Dr. Daneshmand” And he said, “What’s that?” And I said, “You have to write the foreword,” which he agreed to do, and he knocked it out of the park. It’ll frighten you down to your toes when you read that foreword. And it’s a great intro to the book.

I decided to write it because I wanted to help. A couple of years after my surgery, I was there for my annual checkup with Dr. Daneshmand, and he said, “Frank, is there anything you wish you had done differently?” And I said, “No knock on you or Mark, you guys were great, but I really wish I would’ve talked to somebody who had been through this.”

Rick Bangs:

Amen.

Frank Sadowski:

“Because there were two things that I was absolutely not prepared for.” And he said, “Well, what is that?” I said, “The absolute bone crushing fatigue.” I’ve never felt anything like it before or since. I would talk to my parents, my elderly parents in Florida on the phone, and I would literally pass out in the middle of a sentence. I had no strength whatsoever, couldn’t focus. I’m a huge football fan. I would sit in the media room and I’d find myself staring at the wall behind the TV not even knowing who was playing. And then the second thing was, when you think about neobladder surgery, building a new bladder out of a piece of your intestine, it’s science fiction, right?

Rick Bangs:

Mm-hmm.

Frank Sadowski:

So I thought that the urinary diversion and learning how to pee again would be the big challenge. What I was not prepared for is what happens to your body when they tear out a meter of your ilium. And the digestive situation was pretty gross and totally unexpected. I just didn’t expect it to be that intense. So that’s why I wrote the book, because I’m not going to be able to talk to everybody. Dr. Daneshmand points patients around my age with around my stage for me to counsel them. I’ve done that with tens and tens of different patients, but I can’t talk to everybody. So I thought I would write the experience out in a book.

Rick Bangs:

That’s great. That’s great. I know our listeners will be interested in finding that book. All right, so were there other people who may have encouraged you to write this book?

Frank Sadowski:

The blog readers were the big factor and Dr. Daneshmand. I mean, when I found out that no one had ever really written a comprehensive book that was just about neobladder surgery, that certainly was a huge encouragement. The last and probably most significant encouragement who’s the book is dedicated to is my wife, Laura. She was with me through the whole thing and she said, “You might get some closure out of this.” I suffered terrible clinical depression a year after the surgery and after I got through it, she said, at the five-year mark, she said, “You’re past all that. It could be pretty cathartic for you.”

Rick Bangs:

Sure, sure. So this may play into the next question I want to ask, which is how you came about the title? So the title is Back to Life. So why did you choose that particular title?

Frank Sadowski:

The title is actually Back To Life: A Bladder Cancer Journey.

Rick Bangs:

Yeah.

Frank Sadowski:

And I subconsciously channeled Lance Armstrong, and I did it totally subconsciously. I didn’t do it intentionally at all, but Lance’s first book was called, It’s Not About the Bike: My Journey Back to Life. Somehow that resonated in my unconscious and I decided on that book. I’m a huge student of the English language. I love the nuance and subtlety of different very fine differences in meaning of words being a writer, as I said, pretty much my whole life. And the original title was Back To Life: My Bladder Cancer Journey. And it occurred to me in reviewing the final manuscript that it really wasn’t about me, it was about a bladder cancer journey. And that may sound super, super fine, super trivial, but it wasn’t to me.

Rick Bangs:

Yeah, no, I think that’s an important point. So as you’re writing the book, what were some of the hardest parts to write about?

Frank Sadowski:

Well, that’s a tough one. I mean, it’s hard to answer. It makes me emotional to answer is what I’m trying to say. The timeline of the book, I didn’t realize this, but the basic story of the book is a period of 10 months. At the end, there’s kind of an epilogue of what happened over the next several years, but it took me 10 months to write it, and the timeline of the book is roughly 10 months. So what that meant was that literally day by day, I was reliving the whole process.

Rick Bangs:

Wow.

Frank Sadowski:

I had no idea when I started writing it, what I was getting myself into. Naturally, the writing about the recovery, I knew that was going to be really hard and emotional, and it was, what I didn’t realize was how hard it was going to be writing about my epic bike ride. I came back 10 months after the surgery, then rode 100k at the Ride for the Roses in Austin. I usually rode 100 miles, but because I was 10 months out from this major surgery, I decided I would try and ride 100k, which I did.

It’s probably one of the dumbest things I’ve ever done in my life. And for this guy, that’s a very high bar, and I suffered mightily and I did it and I should have been proud of it. It was very difficult to write about it because I lapsed into a clinical depression right after that. Somehow I thought it was an epic failure because I didn’t ride as fast as I wanted to and I was in a lot of pain and I realized that I was never going to be the same rider I was before the surgery and it threw me into a depression. And writing about that was really hard.

Rick Bangs:

Yeah. Even you’re having such great impact because of the ride. Wow.

Frank Sadowski:

I should have been ecstatic that I was able to do it, and the opposite was true. And sometimes you can’t control a mental health.

Rick Bangs:

Oh no, exactly, exactly. All right, so you mentioned difficult recovery, so talk to me a little bit about that.

Frank Sadowski:

I will talk to you a little bit about that and I’ll try not to get too graphic because as you know, being a neobladder owner-operator, the first month or so is pretty tough.

Rick Bangs:

Yup.

Frank Sadowski:

The first two weeks with the catheter in place and the fatigue and the digestive meltdowns on an hourly or daily basis was very, very difficult. Then I had an accident, which I detail in the book, which was also one of the hardest things to write about. I was just finally getting over a lot of the digestive stuff. I was about four weeks into my recovery, or no, I was exactly two weeks into my recovery. Excuse me. Because I still had the catheter. I got that out 15 days after I came home. So I was in the bathroom sitting down and I would lay the urine bag on the floor and I made a very, very bad mistake. I stepped on it.

Rick Bangs:

Oh boy.

Frank Sadowski:

And when I stood up, it yanked the catheter and I fell flat on my face screaming. My wife came running in and the flow of urine and blood and mucus in the catheter had stopped. And I tried to walk it off and I collapsed, went into shock and wound up in an ambulance with paramedics taking me into the hospital in Seattle where the doctor there called Dr. Daneshmand. I had instructions from Daneshmand to have if anything happened to the catheter to call his cell phone day or night. And the doctor called up and Daneshmand gave him detailed instructions on how to put this very complex catheter back into place. He gave me Dilaudid and it was still among the most painful things imaginable.

When I went home, I lapsed into what I can only call a hallucinatory state. I was seeing things with my eyes open or closed. I was in pain. I didn’t know where I was. I was terrified. I’ve talked to a lot of people who had traumatic experiences like that who were terrified both in the cancer world and accident, people who’ve had accidents and woken up not knowing where they were or what had happened to them. I think most people, if not all, find something to grab onto. I think the number one would be religion. A lot of people fall back on their faith and God bless them. A lot of people, believe it or not, use anger. They get mad that they had cancer and they get mad that they’re in pain and they’re traumatized and they fight against despair by getting angry.

For me, it was unusual. It was music. I’ve been in a band since I was in grade school and in the depths of this hallucinatory state, I started imagining playing with our old band and literally visualizing my fingers on the fretboard of my guitar, mentally going over and over and over again, the songs in the same order that we used to play them. It took me hours, but it pulled me, it saved my life. I thought I was losing my mind and it pulled me back to reality.

Rick Bangs:

Wow. Wow. Okay. So now there were parts of your story that probably came easily and what were they?

Frank Sadowski:

Yeah. Well, as I said, I’m a journalist, so it may be surprising, but all of the stuff that was along a timeline, because journalism writing is very much about this happened and that happened and this happened. And so the whole process of the treatment was very easy for me to write. I didn’t have any problem writing about the gory details of the TURBT. I actually injected some humor into it. I went to get the catheter taken out after the TURBT, and the doctor asked me, they had some medical students from the local university, would I mind if they observed the catheter. I said, “No, that’s fine.” At this point, and I don’t have to tell you this, at this point, you have no shame whatsoever.

Rick Bangs:

Well, yeah. I always said all they had to do was just kind of make their finger move down and I knew my pants were coming off. So I hear you.

Frank Sadowski:

I tell people, I literally lay naked on the table in this book. So anyway, they brought in four medical students. They were 18-year-old, 19-year-old girls, and that was pretty funny. So yeah, that part, all of that was surprisingly easy for me to write and it flowed very quickly. The words came out very quickly.

Rick Bangs:

Wonderful.

Frank Sadowski:

I’m a very fast… Being a journalist, where you’re under a deadline all the time.

Rick Bangs:

Oh, yeah.

Frank Sadowski:

I’m a very fast writer. I characterize it as being a diarrhea writer. I write millions of words and then I go back and compare it back and edit it, having been an editor.

Rick Bangs:

Right, right. And that makes sense because just getting something down is like 90% of the battle.

Frank Sadowski:

Yes. A lot of my writer friends have told me that the writing part is the easy part.

Rick Bangs:

Yeah. The editing-

Frank Sadowski:

It took me 10 months to write it and eight months to publish it.

Rick Bangs:

Sure, sure. Okay, so now, a little bit interested in what happened, what’s on the cutting room floor, as they say. So what didn’t make the book and why didn’t it make it?

Frank Sadowski:

Well, two things. I’ve thought about this a lot. The first one is my brilliant editor, Marianne Erickson, who full disclosure is also my older sister. She is a retired Scholastic book editor, so she’s a pro. I enlisted her to be both the copy and content editor. So we started out with an interview where she asked me what the purpose of the book was. She asked a lot of the same questions that you’ve already asked, “Why did you do this and what’s the purpose of the book?” I told her I wanted it to be not a cancer book, certainly not a medical-only book. I wanted it to be, I characterized it as an adventure story seen through the eyes of a reluctant adventurer. And she got that and she read the first manuscript and she said, “It’s too medical. There’s too much medical detail.”

When you write, you always need an editor because you can’t see the forest for the trees because it’s your own writing. She said, “You wanted it to not be a medical book.” Because I had done all this research into bladder cancer, so I knew the gory details of a lot of the procedures. And we wound up taking out 30 pages, very painstakingly, making it much more natural, conversational writing, and much less long technical explanations.

The second thing that landed on the cutting room floor, and only one thing, but my wife, Laura, being a cancer survivor, and I say in the epilogue of the book, “There are basically two types of cancer veterans,” as I call them. I don’t like the word survivor. One is the kind of person who never wants to talk about it other than having the follow-up treatments and just keeping it to themselves. And I respect that completely.

Rick Bangs:

Sure.

Frank Sadowski:

And then there’s the other kind, the other side of the coin is people who are very comfortable talking about it and want to share their experience and try and help other people. And you can probably see what side, someone who writes a book about it is.

Rick Bangs:

Yeah.

Frank Sadowski:

Yeah. So Laura had an absolute veto. She’s one of the former. She does not like to talk about her breast cancer and her surgery. Well, I told her, you read the semi-final manuscript, and if there’s anything in there that you don’t want said, there’s no discussion, no pushback, absolute veto. She read the whole book and she vetoed one episode that I put in, and obviously I’m not going to tell you about it because it was vetoed, but it was a semi-humorous comparison. I was her caregiver for a couple of months after a very serious surgery, and she was mine, and I made it again, kind of a semi-funny comparison of one very graphic aspect of our caregiving. And she said, “That has to go.” So that went right away.

Rick Bangs:

Okay, good. That makes sense. All right, so you talked about your sister. So who helped you with the writing and did they have any major inputs? And I think your sister is probably somebody who might’ve had some inputs.

Frank Sadowski:

Yeah, no kidding. If you could have read the original “completed” manuscript, compared it with the actual book, she’s a genius. I mean, any good characteristics of this book are owed largely to Marianne. And as far as helping me with the actual writing, nobody did. As I said, I’m very comfortable writing. I write quickly. She was the copy editor and also the content editor, which is very unusual for someone that do both. But she’s, as I said, a pro. And an interesting anecdote that kind of illustrates how great her input was and how insightful she was is we were completely done with the book. It had taken us seven and a half months to get the cover art and the rear cover blurb and the rear cover photograph and the font selection and the paper selection and the book formatting, the chapterization and pagination. It was all done.

We were literally 24 hours from hitting the send button and she called me and we always communicate via email. I was surprised to get her a phone call, and she was very concerned. I could hear it in her voice. She said, ” You know, I have a problem.” And I said, “What is it?” And she said, “I know bladder cancer occurs three to one men to women.” She said, “But a lot of women are going to read your book, hopefully. And there’s really nothing in there in the whole book, there’s really nothing about women and bladder cancer.” So I got a hold of Dr. Daneshmand, and I was surprised to learn that he’s pretty pissed off that many, many cancer hospitals will not flat out refuse to even consider doing neobladders in women for various physiological reasons, primarily pelvic floor weakness due to multiple childbirths. But anyway, Daneshmand does more, he does more neobladders than any doctor period, but he does more in women than any other doctor. And so he gave me a couple of links and I did some research and I considered, because again, we were done, we were finished.

Rick Bangs:

Or so you thought.

Frank Sadowski:

I considered adding a chapter and saying, “Here’s a chapter about bladder cancer in women.” And it just occurred to me as a writer, that’s kind of intellectually dishonest. So we delayed publication for six weeks and Marianne and I went through the book line by line, and anywhere the analysis or the explanations could relate to women, we added a sentence here and a paragraph there. And it made a huge difference in the book. And that’s just one example. I could give you a bunch, but that’s probably the most compelling example of how insightful her input was.

Rick Bangs:

I think that’s a wonderful piece of feedback because it’s very much underserved. It’s not well known and not well presented. I know BCAN has some programs specifically to address this, which is absolutely critical.

Frank Sadowski:

Yes, agreed.

Rick Bangs:

So knowing what you know now, what would you tell 2007 Frank?

Frank Sadowski:

I would say, “Frank, fasten your safety belt because there’s turbulence up ahead.”

Rick Bangs:

Yeah. And so what would pre-bladder cancer Frank have said about what’s transpired since 2007?

Frank Sadowski:

That’s an interesting question. I think if pre-bladder cancer Frank could have seen the story and everything that had happened. Like many people, if you read some of the reviews of my book on Amazon, a lot of people say what I did was heroic or that I was some kind of a hero. And I think pre-bladder cancer Frank would’ve thought that way too, that that’s really kind of a heroic act to go through all this and make the right decisions and follow through and get back on the bike. But that would be wrong. I mean, pre-bladder cancer Frank would be wrong because the survival instinct is the strongest instinct in the human race. And when something like this happens to you, it’s not any kind of heroism or inner strength, it’s survival, and you’ll do anything to avoid dying. So there was nothing heroic about it.

Rick Bangs:

Yeah. I mean, we will go to lengths that we wouldn’t have anticipated in the [inaudible 00:31:52].

Frank Sadowski:

Right. I always think about that so many people have said to me, they read the book and they say, “You went home from the hospital wearing a diaper, a 55-year-old man. I would rather die of cancer than wear a diaper.” And I just shake my head and said, “You have no idea what you’re talking about.”

Rick Bangs:

No.

Frank Sadowski:

I mean, you’d beg them to cut off your leg if it was going to save your life.

Rick Bangs:

Exactly.

Frank Sadowski:

Literally.

Rick Bangs:

Exactly.

Frank Sadowski:

And you know that’s true.

Rick Bangs:

Yeah. Yeah. So I want to hear the story behind the phrase, “Is today the day?” Because I think that is going to resonate with our listeners.

Frank Sadowski:

I hope so. I’m not going to tell you the end of the story because that’s the end of the book and there might be some people out there who actually want to read it. But one of my very best friends in the world, his name is Roland, he’s in the consumer electronics industry his whole life, like me. I’ve known him for almost 50 years, and I was very good friends with him, and I knew his wife Anne very, very well. She was an early breast cancer patient, had a double mastectomy and was basically NED, no evidence of disease for years. She actually was a big breast cancer advocate. She ran a discussion group for women of a younger than average age who had breast cancer, which is what happened to her many years before. She was doing a charity run. She’s a big runner. She was doing a charity run, and her oncologist said, “Just come in for a routine checkup.” And she had stage four recurrence, fully metastasized breast cancer and she died seven weeks later.

I went to her funeral. It was probably the saddest thing I’ve ever seen in my life. She was a wonderful woman. When my wife was diagnosed with bladder cancer at a relatively young age, it was over 20 years ago, Roland was the first guy I called and I told him what was going on and he said, “Your life will never be the same. Every day, you’re going to look at your wife and you’re going to wake up and you’re going to say, ‘Is today the day? Is today the day it comes back?'” And he said, “I did that for… ” I don’t know how long she survived, I think 17 or 18 years. And he said, “For all those years, every day, the first thing I thought in the morning was, ‘Is today the day?’ And Frank, one day I woke up and today was the day.” And that, I won’t tell you how that relates to the ending of the book.

Rick Bangs:

All right, all right. But it’s a nice teaser and it’s something I think we all understand, those of us who’ve been diagnosed because it’s just this sudden shock. It’s like this trap door opens under you and…

Frank Sadowski:

Very much so.

Rick Bangs:

… your whole life changes.

Frank Sadowski:

Right. So did you have, in your experience, did you have any of the… I know you probably had a, since it was in 2006, it was probably a pretty difficult recovery and recovery is much easier today than it was then. But did you have any kind of cathartic moments in the several years after your surgery that just kind of stuck with you until today?

Rick Bangs:

I think there was a period during my recovery when I was frustrated with my neobladder because it wasn’t performing like original equipment. And so I was complaining, and I remember my mother looked at me and she said, it was like we were having two different conversations, but she said, “Aren’t we so lucky that there are neobladders?” And it completely reframed it for me. It was like, yeah, I’m having this experience. It isn’t what I want it to be. The return to continence is so glacial, but I’m looking at this through the wrong lens. I mean, her lens is, “Hey, you know, we are very lucky that you had this surgery and now you’re on the road for recovery.” And I’m looking at it as I don’t have the continence that I want to have whenever it was some days or weeks out from my surgery.

So I think that was cathartic. I wanted to have a really a clean second year because two and five years are big deals.

Frank Sadowski:

Yes.

Rick Bangs:

Right? And unfortunately, I had a positive FISH test at two years. And so I got robbed of my two-year, but obviously I’ve had five years and more. But…

Frank Sadowski:

How old were you when you had your surgery?

Rick Bangs:

I was 48.

Frank Sadowski:

Wow. I was 54, and that’s considered very young.

Rick Bangs:

Yeah. Well, they were shocked and I had zero risk factors. So I mean, who knows?

Frank Sadowski:

Same here.

Rick Bangs:

Yeah. I mean, who knows? And that’s why this whole concept of, “Oh, the trap door suddenly opened.” It’s like if I had had a lot of any kind of environmental exposures, smoking or arsenic and well water or hairdressing dyes or whatever, then I could at least rationalized it. I wouldn’t necessarily have been expecting it, but I could rationalize it. But it was like, who knows? I don’t know what caused it.

Frank Sadowski:

Yeah. Well, 80% of all cancers are not hereditary or environmental. They’re just cells going crazy.

Rick Bangs:

Right, exactly.

Frank Sadowski:

So one of the interesting things, I think almost all of the cancer veterans that I’ve talked to, and I’ve talked to a lot because of the book, have some idea of what caused their tumors. And for me, I worked in the consumer electronics industry in Europe for several years, spending literally months at a time at trade shows. And the trade shows in Europe, small portable conference rooms, unventilated, where literally everyone was smoking.

Rick Bangs:

Yeah.

Frank Sadowski:

I mean, I would throw my suits away when I got home because it was impossible to clean the tobacco stench out of them. I would buy a couple of cheap suits at men’s warehouse and literally throw them away. And at dinners, people would be literally smoking while they were eating. I’ve never seen anything like it. Europe has radically changed since then.

Rick Bangs:

Sure.

Frank Sadowski:

This was a lot of years ago. But as you no doubt are aware, bladder cancer is the second cancer for it to be clinically proven that secondhand smoke can cause it. The first of course being lung cancer.

Rick Bangs:

Yeah. To be honest with you, I think my experience was very similar because my employer, lots of smoking, all my bosses, all of them, big smokers. You’d go in, it’d be a small office, conference rooms. So I think my origin is probably very similar to yours, but-

Frank Sadowski:

Stateside here, it was like that in the early days too, but nothing like what it was in Europe. You get 20 Gauloises smoking Frenchmen and in a confined space with no ventilation and it’s hard to breathe.

Rick Bangs:

Oh, yeah, yeah, sure, sure. Okay. So you talk in the book about the blessing of cancer, but you also talk about the fact that cancer hurt you badly. So what did you mean and how do you reconcile these statements?

Frank Sadowski:

Well, the first time I ever heard anybody talk about the blessing of cancer was before I got sick. I was at the annual Ride for the Roses in Austin, Texas. And Lance gave his after dinner speech at the big dinner that they had annually for the top fundraisers in the world for the foundation of which I was proud to be one. And he spoke about the blessing of cancer, and I said, “This is just too over the top. Cancer is so awful. I watched my wife go through chemo and it cannot be a blessing.” And he explained and he said, “Not that I would want to have had it. I would love to have never had cancer.” He said, “But I was a brash, egotistical, nasty young man who had natural talent for cycling and I could win a couple of one day races by just no tactics, just going balls to the walls for the entire race and stage racing.” Like the Tour de France, it doesn’t work that way. It’s highly strategic, reliance on teammates, meticulous planning.

And he said, “If I had not had cancer, I would never have won a single stage race, much less five straight Tours de France,” which where he was at that year. And that kind of made sense to me. And now I feel the same way. Would I have wanted to have cancer? Of course not. I would’ve done anything to avoid it, but I didn’t have a choice. And I know that from getting through this experience, that I am a better father, a better husband, a better friend, and probably a better person than I would’ve been had cancer not tried and failed to destroy my life. And that having been said, I hate cancer. I mean, childhood cancer breaks my heart. It just steals loved ones away from you and it’s so insidious, as you know. I mean, with most cancers, if it hurts, you’re probably too late.

Rick Bangs:

Right.

Frank Sadowski:

So I can reconcile those two things. I hate cancer, and it destroyed me. It threw me into clinical depression. I’ve never been half of the cyclist I was before my disease, and that hurt. I mean, that hurt me badly.

Rick Bangs:

Yeah. You may not be half of the cyclist, but you’re twice the person. So, wow.

Frank Sadowski:

Well, that’s what I mean by the blessing.

Rick Bangs:

Yeah. Yeah. Which makes complete sense. So you talked about an epilogue. If you were to write an epilogue to that epilogue or even a sequel to the book, what would it talk about?

Frank Sadowski:

Well, I certainly do not want there to be a sequel.

Rick Bangs:

How does Marianne feel about that?

Frank Sadowski:

Because that would mean that I had a recurrence. And I certainly don’t want to write a sequel. An epilogue to the epilogue, I’m not sure there’s a lot to add. I mean, the quality of life, and I had moments just like what you so accurately described of kind of a trap door falling out and saying, “You know, I worked so hard to regain continence or to fight impotence and sometimes it’s just like, why did this happen to me?” We all felt sorry for ourselves at some point in there. The epilogue would be, I’ve come to reconcile the daily challenges that I still have and realize that my quality of life, aside from being happy to be alive as Keith Richards once said before concert, I’m really happy to be here. Actually, I’m really happy to be anywhere. That’s kind of the way I feel. But the quality of life overall, I mean, nobody having dinner, doing chores, going out with friends. No one would ever know that I have a neobladder or that I was basically told I was going to die.

Rick Bangs:

Right. Okay. Any final thoughts?

Frank Sadowski:

Well, obviously, the first thing I’d like to say is thank you. It’s a pleasure to be a part of your podcast and I deeply appreciate it. So thank you. Secondly, I would like to say to, I’m sure, many of your listeners, if not all, are caregivers, bladder cancer patients, healthcare providers in the cancer field. And I would just like to say, good on you all. Thank you for everything that you’re doing and for the cancer patients or the cancer veterans, congratulations. It’s a hard fight. Nobody can say it’s an easy thing to do is to go through cancer. It’s hard on your friends and your loved ones and your family. But more than anything else, it’s hard on you. And my final statement would just be, you can get back to life. Don’t give up because you can get there.

Rick Bangs:

Very, very inspirational. Thank you. So Frank, I want to thank you for sharing your details about your bladder cancer journey and talking about this amazing book you’ve written called Back To Life. If you’d like more information on bladder cancer, please visit the BCAN website, www.bcan.org. In case people wanted to get in touch with you, could you share an email or a Twitter handle, whatever contact information you’d like people to have?

Frank Sadowski:

Yes. The email address frank@bladdercancerjourney.com, which is in the book is no longer active. Through a glitch with my website provider, it was accidentally permanently deleted. So listeners are welcome to contact me at my personal email, which is fsad800@gmail.com. Also, if you’re not comfortable with email, you can go to my blog and contact me through the comments section of the blog and the address is fsadowski.blogspot.com.

Rick Bangs:

Excellent. Just a reminder, if you’d more information about bladder cancer, you can contact the Bladder Cancer Advocacy Network at 1888-901-2226. That’s all the time we have today. Be sure to like, comment and subscribe to this podcast so that we have your feedback. Thank you for listening, and we’ll be back soon with another interesting episode of Bladder Cancer Matters. Thanks again, Frank.

Frank Sadowski:

Thank you.

Speaker 1:

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.