Dean’s Story: “You have to remember that life does not end when you’re diagnosed with bladder cancer.”

Listen to our interview with Dean on BCAN’s Bladder Cancer Matters podcast:

An overseas restroom stop transformed into an unforeseen encounter for Dean Karrel. The presence of blood in his urine hinted at more than a momentary worry. Upon returning to the States, he confronted an unexpected twist in his life’s path—bladder cancer. Yet, his journey is one of resilience and triumph over unforeseen hurdles. This is Dean’s story:

Before November of 2021, I was on a business trip in the UK and was on the Heathrow Express from Heathrow Airport to downtown London. It’s the last place where you want to use a restroom. I was at the Piccadilly station in downtown London and went down two stories deep into the basement of the train station to use the restroom. I had blood in my urine and the last thing I’m expecting is bladder cancer. I thought it was a kidney issue, maybe a urinary tract issue. Fortunately, I had my annual physical scheduled right after my return to the States.

At that point, I thought, do I go to a hospital in London? Maybe it was a one-time thing? The last thing I’m thinking about is bladder cancer. I had had my urinalysis and blood work done before my trip to the UK and everything was fine, no symptoms at all.

At my annual physical, the first week of November 2021, my primary care physician sent me to get an ultrasound and then a CT exam. There were lesions spotted in my bladder. So that’s when the first diagnosis was given.

It came as a shock. Initially, I was thinking, well, oh my gosh, it’s my kidneys, and wondering what was wrong with my kidneys. I thought maybe I injured myself somehow. Like any illness, the last thing you’re expecting is cancer. So I knew something was wrong, but I certainly wasn’t expecting that I would be getting a diagnosis of bladder cancer.

I was familiar with bladder cancer because some celebrities have gone through this. Again, like any illness, some famous people have gotten it such as John Daly, the New York Mets baseball announcer, Howie Rose, who has been very vocal speaking about his journey and having a neobladder. And so, I heard about bladder cancer, but it’s not something that I knew everything about.

What began was a quick process. My primary care physician connected me with a urologist at Englewood Hospital in Englewood, New Jersey. He did a cystoscopy, and then a TURBT where the lesions were removed and examined. It was shown that I had early-stage high-grade bladder cancer.

It was December of 2021, and after the TURBT and the cystoscopy, there was a recovery period to let the bladder heal a bit. They did another cystoscopy after the healing to see if anything was still there and there were still remnants of bladder cancer in my bladder.

I began BCG treatments in February of 2022. I tolerated that whole process well. I mean, it’s basically for five minutes, one day a week for six weeks, and you have some minor discomfort. Once you get over the sight of the catheter, which is the first time you realize nurses have seen this and doctors have seen body parts. That first visit is always an eye-opener because you’re dealing with your private parts. You get over it very quickly, at least I did.

I did the six weeks of BCG and had another cystoscopy done in April of 2022. Unfortunately, I was keeping the cancer at bay, but it was not going away. The big thing was that you’ve got to keep it in the bladder and not go into the bladder wall. The reality became stopping it because if it went into the bladder wall, it would risk traveling elsewhere.

My treatments were not working. I had a session of chemotherapy and gemcitabine, and I did not tolerate that well. It was a very sensitive part of getting that instilled into my bladder and it was very hard to keep it in me. Even though mine was early stage, it was not being cured, not being maintained.

The whole process was, it’s odd to say, but it was so straightforward. I would go see a doctor, get it instilled, and go home. The problem was I wasn’t solving it. I went to see a surgeon by the name of Dr. Mutahar Ahmed from the Hackensack Medical Center in New Jersey.

I said to him that at that point, we weren’t solving it. I started reading about neobladders, and Indiana pouches.  I was reading about ileal conduits. Again, with my background being in sales, my big line was always planning and preparation, being ready and understanding, and doing your research. I was still thinking that I could solve this, that the medical community could solve my situation. Dr. Ahmed agreed. He said, “Dean, I’m a surgeon, but let’s give this another try.” And I went through six weeks of intravesical chemotherapy.

This was July, August, and September of 2022 and in September, Dr. Ahmed brought me into his facility where they perform cystoscopies and other tests where they’re able to do biopsies. I had a camera in my bladder where I could watch. He asked if I wanted to take a look, and I said I’d love to. You could see where they had done their work before and where lesions had been removed. There were a lot of colors that didn’t look right. And that’s exactly what came back, the chemotherapy did not work.

Here’s where every patient is different and have different philosophies. Some patients will say they want to keep trying, to continue chemotherapy or find something new. With early-stage bladder cancer, there are certain levels of chemotherapy you can receive. You also have patients talk about getting Keytruda and if you’re early stage, you can’t get Keytruda. You must be stage three or four. It’s an interesting thing. Some patients want to keep their bladder at all costs and don’t want their lifestyle to change. I became a realist after a meeting with an oncologist where he said to me, “Dean, you’re reaching a point where you’re playing with fire. We can keep doing chemotherapy, we can keep doing treatments, we can keep doing cystoscopies and cleaning you out, so to speak. But there will be a point where the risk is it will enter the bladder wall or lymph nodes.”

I was 67 at the time, and I said, you know, I want to be here for my grandson, my family. Did I sign up for this? No. No one signs up for this. No one signs up for any illness.

So, I decided with Dr. Ahmed and in consultation with others to get ahead of this and have a radical cystectomy. The decision then was do I choose a neobladder, Indiana pouch, or ileal conduit? Because I am in decent shape and because I’m relatively young, per se, for bladder cancer, a lot of people recommended the neobladder.

There’s a learning curve for many people with a neobladder that doesn’t happen quickly, but they swear by it. I thought, yes, it’s going to be a lifestyle change no matter what I have. So, I decided on the ileal conduit, the simplest option with the fastest recovery time.

I had the surgery on November 29, 2022.

I am a very upbeat person. I faced the reality months before the surgery that the situation was lousy, and I wasn’t happy. Post-surgery, I had one morning where reality did hit me. My pouch was leaking, the wafer was not working right. I had pain in my shoulders from the anesthesia. I couldn’t raise my shoulders. I was soaked, my gown was wet, the wafer was leaking, and I needed help changing. And I’m thinking, is this my life? I was crying, not sobbing and weeping, but I couldn’t stop crying, just tears in my eyes. And then a nurse brought me back to reality saying, “You’re not going to solve this in a day.”

Fortunately, I recovered very quickly. I got through those first few days. Do I enjoy having a pouch and a wafer? Absolutely not. Is it a pain in the neck trying to figure out how pants fit and so forth? Of course. But luckily, I recovered within a week.

My wife and I went home four days after surgery. I’ve had a minor leak maybe once every six weeks. People write about leaks all the time and they are constantly looking over their shoulders. The biggest thing I say to people is when you have to change your pouch or put on a new wafer, it’s not like the old days where you get up in the morning, go to the bathroom, have a cup of coffee, and go off to work or to have some fun. It takes time and you can’t rush.

The days of me hopping out of bed, shaving, and boom, off to wherever, those days are different. And you have to realize it is a different lifestyle. The other thing I talk about is that no one cares. They care about my health, but people aren’t coming up to me to say, “Oh my gosh, you have an ostomy?” If I bring it up, people bring it up or ask me about it. But if you look at me now, do I look like I’ve had an ostomy? Do I look any different? No. The mental aspect is as or is more important than the physical aspect. You have to learn how to put on a wafer and you have to learn how to add the pouch, but after that, it’s really how you act that makes the difference. Some people face obstacles differently than others and I’m fortunate in that I’m positive with this, that I’m moving forward.

I’m very lucky. The doctors were terrific. My wife has been terrific. My son and daughter have been terrific. I’m blessed to have a strong mental state. My daughter was trying to get pregnant right about the time when I was diagnosed. So, I didn’t tell my daughter or my son that I was sick because he was getting married in July of 2022. I didn’t want to be the dad where people would say, “Oh, look at him. He’s got cancer.”

I went through this whole year, for about eight or nine months from November through July, where the only person who knew was my wife. She was my rock in handling all of this.

Again, I accepted the reality of my diagnosis a lot better than most patients. I just said I have to move on. I can’t be dragged down into depression because of this. Was I happy? No. But I had to find a way to keep playing golf, to go out and have fun with friends, to go dancing.

I was a nervous wreck about going swimming. I’m thinking, how am I going to go swimming? Well, you just wear a little extra belt around your waist. I was also nervous about traveling. How do I get on a plane? I took a trip, and I was extremely worried. I went to one urologist who said to me, “Dean, just get on a plane. What do you do now when you have to go to the bathroom on a plane?” And I go, you know what? I get up and I go to the bathroom. “Don’t worry about your pouch, just go,” he said. And I did.

I realized, you know what? You get up and you go and empty your pouch. I was afraid about the TSA. I was wearing a pouch, and I was nervous about it. It doesn’t bother me. I’ve accepted it. But when I went to the airport, I thought, oh, please don’t let me be the one where they say he’s got something there. And of course, I’m the guy who got selected for the full body search. I said to the TSA agent, “I have a urostomy.” The TSA agent said to me, “Mr. Karrel, we have seen everything. Don’t worry about it.” And he smiled. He asked if I would like to be searched privately, or if I wanted to do it right there. So in the middle of the airport, I said, let’s just do it here.

I realized he didn’t care. He cared about my health, but he didn’t care. So it’s a big hurdle for patients to realize that you know what? It is what it is. You have to move forward.

It’s important to do your research. I went to the BCAN website early on and I read the patient stories. I knew that I would also read stories of people who are facing difficulties. You have to approach this in a realistic way and in a way that also involves listening to people who have faced a bladder cancer diagnosis and have been around for 5, 10, 15, 25 years, and are living their lives.

Nobody signs up for this. Nobody signs up for any illness You have to remember that life does not end when you’re diagnosed with bladder cancer. Yes, it’s going to be different and yes, there will be moments of, gosh, this stinks or worse. But look at me. I’m living my life. Is every day a bowl of cherries? Of course not. Every day wasn’t a bowl of cherries before I had bladder cancer. So I tell people, learn as much as you can. Be honest with your doctors. Ask your friends for guidance and advice. Get advice from doctors, not from somebody you don’t know.