My Journey with Bladder Cancer

“Given your age and active lifestyle, the chances of this being something bad are extremely low,’’ the urologist said in his North Miami office that early Friday morning. As he spoke, my eyes slowly traveled over the bright orange anatomical diagrams of the bladder, kidney and prostate that decorated the wall of the sterile exam room. I wondered, which organ was releasing those mysterious red specks? And what could be wrong with me that I was given this referral?

Still, his eyes brimmed with kindness. He radiated a calmness which in turn made me feel somewhat at ease especially when he said, "You don't fit the profile for bladder cancer." I jotted his words down on my note pad. Then he ordered additional tests.

That was just over a year ago, the beginning of my journey with bladder cancer. May is Bladder Cancer Awareness Month and I'm sharing the experience with the hope that others may learn about early detection and noticing the tiniest of symptoms. My close circle of friends have strongly encouraged me to share my experience in case someone out there is going through what I went through. ( I also tend to overshare.)

MY JOURNEY BEGAN WITH RED SPECKS

I could hardly see the speck. Like a red stray piece of confetti, it swirled down inside the toilet bowl. I thought, maybe I strained a muscle from running?  I was always dehydrated from my two to three mile runs.  And I had a physical a few weeks before so I knew everything was fine. So I didn’t think much of the dot and mentally filed it away.

A few days later, it happened again.  A red dot. And then another speck here and there in the following days. I wasn’t in pain or anything.  I thought, maybe inflammation in my bladder or kidneys?

But when my urine streamed bright red on an August Friday afternoon, I panicked. My heart raced. I called my primary doctor and she made time to see me that Monday. I had also snapped photos with my smartphone of my urine to show her exactly what I saw.

“Johnny, that’s not a little blood. That’s a lot. I don’t like what I am seeing there, ‘’ she said that Monday and immediately ordered a urine sample.

Two days later on my commute to work, she called with the results: microscopic red blood cells were present in the urine.

“They shouldn’t be there,’’ she said. During my drive to work, I cringed, rubbed my forehead and frantically wondered, what is going on?

MORE TESTS

That call led to an ultrasound of my kidneys and bladder and the referral to an urologist.

Days flowed into a new month, September. An ultrasound revealed some thing, about three centimeters or so, inside my bladder.  My doctor said it was difficult to tell what it was exactly.

My heart pounded in my ears. I held back the tears as I spoke to her from a conference room at work that Tuesday afternoon. She reminded me again to make an appointment with the recommended urologist. I already had and it was for the following week.

YOU DON'T FIT THE PROFILE
When I met the urologist,  I described the symptoms. We talked about the ultrasound report which he said could be read wrong. He wanted to do more testing.

His calm and friendly demeanor comforted my frazzled nerves.

When he explained that I didn’t fit the profile of someone with bladder cancer, time seemed to stop for me. I had never thought about bladder cancer. I really didn’t know what it was. I told myself, nah, that's not me. This has to be something else like a kidney stone or something.

He said that men over the age of 72 typically get bladder cancer. Smokers, too. And guys who work with some type of dyes or chemicals. I was 43, a non-smoker (never took to cigarettes) and the only dye I used was to occasionally color my grays (shhh.) He also noted that it’s rare for someone my age to have bladder cancer. I scribbled everything he said in my notepad and repeated to myself, I don't fit the profile. I should be okay. This is something else.

“This could be an injury from running,’’ the doc added.

I felt somewhat relieved after that office visit. (It didn't hurt that he looked like Canadian prime minister Justin Trudeau but I digress.) Still, he ordered a CAT scan of my abdomen and then made an appointment for a cystoscopy (a procedure in which a thin tube fitted with a camera is inserted into the penis to look inside the bladder.) I wasn't looking forward to that but I took some comfort in knowing that I was doing something, a plan of action. More answers to come.

Two weeks later, the CAT scan confirmed the ultrasound but in much more detail. A growth the size of a big peanut sat on the right side of my bladder. WTF?

When he called with the news, he immediately moved up my cystoscopy.

My nerves rattled. My right hand began shaking. An invisible lemon formed in my throat. Questions tumbled  in my mind.  How did this foreign entity get inside my bladder? What damage was it doing in there? And what did I do to myself to bring this on?

My partner Rafa was extremely supportive. He told me that everything would be fine. His little brother had cancer at a young age and my symptoms sounded completely different and didn't fit.  

“It could be a large bladder stone or a benign growth,’’ he said. “You will be okay. You are doing all the right things,” he said. I believed him and thanked God he was there by my side through this scary journey into, what? I still didn't know.

THE TUMOR

When the day of the cystoscopy arrived in early October, he accompanied me, another balm for my nerves.

As soon as the urologist studied the inside my bladder, he told me with a stern face, “There’s definitely something there.”  I asked my partner to come in to hear the results with me.

“Johnny, you have a tumor,'' the doctor said. "No second opinion needed. We need to take it out tomorrow. I need to go in and scrape it away.” 

Everything shifted into a blurry fast forward. The surgery was set for the following day.

The urologist explained to me that he'd go in through the penis (my poor poor penis) using tiny surgical tools to scrape the tumor from the inside of the bladder. Complicating matters: the tumor sat right on top of the orifice that connected the bladder to the ureter. That would require a temporary stent to be inserted into my ureter to help support urine flow once the surgery was done. The answers I initially sought out only seemed to be getting worse with each development.

SURGERY #1

I'm a surgery virgin so I didn't really know what to expect. But because I’ve had several colonoscopies, I figured the surgery would be something similar: I’d be asleep and then wake up and go home. It was a common outpatient procedure. I'd be fine.

Boy, was I wrong. When I awoke from operation, blood stained my hospital gown. Feeling groggy, I took a peek. My limped member looked like it was in a fight and lost. I gazed at the florescent lights of the recovery room and asked my mom in heaven to help me because I was  friggin' scared. I felt like I was standing at the edge of a cliff in complete darkness, not knowing what was before me. My eyes surrendered to the rush of tears.

Grogginess quickly morphed into pounding waves of intense pain against my lower back. Nausea hijacked my senses.  Back in the hospital room, my partner, and cousins (my sister on Facetime) and my Italian high school teacher (she was in the neighborhood) were there to greet me but I felt as if a semi had barreled into me. I did my best to be my usual smiling cheery self but I couldn’t summon that guy. I felt defeated, different...altered. Would I be able to pee normally again? Will I get a boner again? My immediate focus turned to my recovery, moving on and facing whatever was next.

COMPLICATION

On the way home, every bump on the road felt like a brick that jabbed into my lower back. I was given a pain killer and instructions to take an antibiotic for the next few days. 

But a complication arose. When I went to the bathroom to pee,  I couldn't. I turned on the faucet to inspire some urination. Nothing. I jumped in the shower. Nothing. I willed myself to pee. Please! Please!  Nothing.  In panic, I looked up at the bathroom light and wondered, what’s wrong now?

But nothing happened. When I called the urologist, he urged me to report to the ER right away. I would need a (oh no!)...catheter.

CATHETER #1

My heart pounded mightily as we drove to the ER in Coral Gables at midnight.  Within half an hour and after some uncomfortable squirming and heavy breathing on the examination table, I had a catheter inserted. The attached bag quickly filled up.  The built up bladder pressure had finally been released. Whew.

For the next two days, I limped around with the bag strapped above my right knee. I walked cautiously, feeling the tube tug at you know where. At the Publix downstairs in the apartment building, everyone asked me if I was okay because of my atypical slow gait. I simply explained I had surgery and offered a half smile before tearing up and trudging away.

In addition to my partner, his dog comforted me just by sitting next to me at home. She never left my side, probably sensing my sadness and physical discomfort.

After the second day of being Mr. Catheter, I returned to the urologist's office. He quickly removed it as if he were pulling string from a yo-yo.

I was excited to walk freely once again. And I was thankful I could pee on my own although with pain from the temporary stent.

SECOND COMPLICATION

But the following morning, I woke up and couldn't pee. Panic returned. And once again, pressure quickly built up inside my bladder. Here we go again. Another frantic call to my urologist’s service. Another catheter for the time being. I will spare the gory details and complications of inserting another catheter (it took two tries).  I was relieved that urine quickly began filling the bag, my pipes working at their full capacity again.

TUMOR a

I took everything in stride, one (slow) step at a time. It was the only way I could process all this. I sported the catheter for the rest of the weekend just to be safe. When I returned to my urologist office that Monday, he swiftly removed it as he had done before. He also discussed my biopsies. 

Holding a report, he walked into the exam room with a big smile and I welcomed the positive news he was about to deliver.

“Some good news. You had a TA, tumor A.  That’s the best scenario we could have hoped for,’’ he said, explaining what that meant as I jotted every word down in my reporter's pad. I had a cancerous tumor that was superficial, low-grade, non-invasive, non-aggressive.  “A wimpy cancer,’’ Mr. Justin Trudeau's twin said.  “If you’re going to have cancer, this is the one to have,’’ he said, adding that if the bladder wall had been broken, the bladder would have been removed and I would have needed a (gulp!) permanent urine bag.

I was relieved but confused because I thought a tumor was you know, a tumor, an unwelcome growth, something you remove and be done with it.

“Wait, so the tumor was…cancerous?’’ I asked.

“Yes.”

The urologist said he wanted to perform another surgery in a month to do further scraping of the tumor base, just to be safe. It would be a repeat of what he had just done but with chemo injected directly into my bladder while I was asleep.

“Chemo?” I asked, imagining the exhausting and unforgiving side effects I've seen on TV and in my visits to hospitals.

“Yes but not the kind that will make you lose your hair,’’ the urologist said with a smile. “It should kill any lingering cancer cells. We need to be very aggressive with this. I know you’re not looking forward to this but it’s the best we can do, Johnny.”   I took a deep breath, thinking this isn’t over yet as I left his North Miami office.

THE STENT

In the meantime, I had four weeks off before that second surgery. I was also having difficulty with the stupid stent. Every time I pee'd, it felt like there was coat hanger poking my right side.  And during each piss, I  would have to b-r-e-a-t-h-e through it and look up at the bathroom‘s lights or stare head at the tiny square tiles on the wall.  It was so painful but I kept telling myself,  this is temporary, only a little while longer. I can do this. Other people have it worse. Push...through...this.

I kept the cancer diagnosis on the down low except for my immediate family and circle of friends and my department head at the newspaper. I just wanted to get to the second surgery in November and move forward.  I daydreamed of my two-mile runs in Coral Gables and being the old me again  - happy, active and laughing. That vision brightened my spirit and kept me going.

SURGERY #2

I knew what to expect the second time around.  As I waited to be taken into surgery, I watched CNN and a live newscast about the presidential race in mid November.  “You are doing everything you can and you will be okay,'' my partner reassured me.

I thanked the nurse and anesthesiologist as they rolled me into surgery. For some reason, as I breathed in the lemon-scented gas, I had a feeling that I’d be okay. And I was out.

When all was done, I woke up with a catheter (I had requested it because I didn’t want to go home and not be able to pee and totally FREAK OUT like the two previous times.)  Groggy and nauseated, I sat shotgun as we drove back to Coral Gables. Extreme nausea and some vomiting followed for two days. I told myself,  You can get through this. Push through. Move forward.

CATHETER  #3

I managed as well as I could with catheter #3, considering where it was hanging from. So I tried not to move around too much. It was Thursday and I needed to get to Monday.  A weekend of movies, Star Trek reruns and take out. And once again, the fox terrier by my side, her white furry head warming my thigh and comforting me.

The catheter was out the following Monday. YES! The urologist discussed the biopsies.

“Good news. Wonderful news. No signs of cancer. This is very encouraging,’’ he said as I took notes.

I was relieved yet also exhausted, mentally and emotionally. I thanked God and my mom for looking out for me. I turned to my partner and he squeezed my hand. You’re okay. 

CYSTOSCOPY #2

I returned a month later for another follow up cystoscopy. The urologist also had to remove the annoying stent that had been inside my ureter for almost two months. I just wanted to pee normally again without discomfort on my side.

"LOOKS GOOD"

A week before Christmas, he performed the procedure again.

“Johnny, it looks good. The bladder is healing. No signs of cancer.”

I could truly celebrate Christmas and the New Year with good news. I could have peace of mind again, at least for a few weeks. And...I could finally start running again. During my first run, I began slowly, slightly unsure of my body. But with each step, I regained my confidence, eventually sprinting like a free-spirited colt loose in the streets of Coral Gables. I hoped the good news was the flicker of light that would guide me toward this journey's end.

CYSTOSCOPY #3

I returned in March on my three-month mark for another cysto (medical speak for cystoscopy).

“Johnny, everything looks fine. I don’t see any recurrence of bladder cancer,” the doc said.  I smiled as I wrote everything down in my notepad. “You are really lucky. Thankfully, you had a Tumor a.”

He suggested extending my following three-month visit into four months to July. I smiled as wide as my mouth allowed. I felt like doing cartwheels, if only I knew how.

CYSTOSCOPY #4
Another bladder check in late July. For some reason, I had a feeling everything was fine.

No pain. No symptoms although I got into the obsessive habit of holding my breath and scrutinizing my urine for any signs of trouble.  I always say YES! and thank God when the urine looks clear. (I am also a little OCD..)

As the urologist performed the procedure (I felt like a pro this being my fourth cysto), he immediately said, “So far, so good Johnny.”  And he followed that with “It looks perfect. You can write that down in your notepad. No signs of cancer or tumors.”

I asked him about the tumor and its possible origins.
“I think this was a random event,” he said.  He decided to extend my every-three-month follow-up to six months. And eventually, if all continues to go well, I’d have a cystoscopy every six months, and then once a year, for the rest of my life. I could live with that.

I exhaled with relief, smiled and texted and called my loved ones. And I returned to work with a heart filled with gratitude.

CYSTOSCOPY #5
The most recent cysto was Valentine's Day (not really how I envisioned I'd be starting Cupid's holiday.)

"Everything looks fine. Your bladder looks perfect,'' the doc said in the exam room.
As he sat down with me to talk about extending my next visit to eight months (I smiled and gladly nodded my head) he said, "I think this was a freak thing. Guys your age shouldn't be getting bladder tumors."

CYSTOSCOPY #6
I returned 10 months later in October 2018 which marked two years into this journey. Once again, my nerves rattled as I laid myself back on the familiar exam table with my eyes trained at the lights and my jeans pulled down to my ankles. I knew the exam would only take a few minutes. And then I heard the always-welcomed good news, "Johnny, your bladder looks perfect. You are fine."

CHANGE OF LIFESTYLE

After the urging of my vegetarian friends, I tried switching to a more plant-based diet which they swear by. They sent me links and videos on Instagram about the benefits of such a diet against cancer. I had already been making banana-strawberry-blueberry smoothies for breakfast. But I enhanced that in the past year by adding cranberries and eating more vegetables throughout the day and less chicken and turkey, which I loved.

ADIOS, DIET SODA

I also quit diet soda (a daily mainstay for over 20 years.)  I've substituted that with drinking bottled water to stay hydrated. Before the diagnosis last year, I remember my urine was always a dark butterscotch.

Most mornings, I also squeeze lemon juice into a glass of water to start my day. (It’s refreshing and gives me a boost.) I am always hydrated and that has had an unexpected result – my face has been completely clear for the past year.

I can’t say whether any of the above diet changes have helped me with this situation but I definitely feel better than I did before the diagnosis. It can’t hurt to make a healthy investment in your life. And I also run as much as I can because when I run, I feel alive, healthy and thankful that everything has turned out okay so far.

CHECK YOUR PISS

I am no expert. Please, especially men, look down at your urine as you pee. Pay attention to any slight difference in color and more importantly, for a red speck swirling at the bottom of the bowl.

And if you’ve read this far (thank you for sticking with me) and were wondering, my banana is as good as new and back to normal, thankfully.  

For more information about bladder cancer, visit the American Cancer Society page.

That's me after completing my first 5K at the Turkey Trot Miami 2017. I  had promised myself I would complete a race if I could get through my bladder cancer surgeries and procedures. In a way, I felt like I completed two races.