A Brief History of My Bladder Cancer: Blood in My Urine to a Cystectomy

I have been contributing to this site, BladderCancer.net, for a few years now. I have written many individual posts covering specific things I experienced over the past 9 years since being diagnosed with stage T2 high-grade cancer. In fact, this month is the 9th anniversary of my diagnosis.

Yay me? Sort of

Without that diagnosis, I would probably be haunting my wife's new boyfriend right now.

But it occurred to me that someone looking for information on bladder cancer may find it difficult to put together a "big picture" of my experience. One would need to piece together a bunch of different posts and hoping they are in the correct timeline.

Therefore, I thought it might be helpful to see an abbreviated version of my journey – outlined so one could easily scan through and see the progression (good and bad) from finding out to living each day with my "enhanced" bladder capabilities.

A lot goes on with any cancer journey so to make it easier to read I have broken it into two sections: pre-cystectomy and post-cystectomy.

But first... An important note for all

This post as well as any follow-up posts, represent my specific experience with bladder cancer and should not be construed as advice or medical direction. It is simply a recap of my journey based on my awareness and knowledge at the time. Your milage may vary and you should always listen to trained medical personnel. Do that. Please.

So, gather round the fire and grab your hot chocolate as I tell the story of brave Sir Paul of Carolinaland...

June 2012: first signs of blood in my urine

I had blood in my urine when I was little, and the doctors attributed it to small ruptures in my bladder wall caused by me holding my urine too long. Therefore I blew off this experience as a reoccurrence of that. I went on my way – no action on my part.

July 2012

Blood in my urine again. Thinking kidney stone, I watched it for a while, and it did not recur. Again – I place this on the back burner along with any necessary medical attention. I didn't think too much about it.

September 2012: an ER visit and a diagnosis

Driving back from my mother's house in Ohio to South Carolina I stopped to go to the bathroom and when I stood at the urinal I couldn't go.

I pushed and pushed until something just "popped" and a large blood clot came out, followed by a full bladder of blood and urine.

I cleaned up the bathroom - it looked like they filmed a slasher movie in there - and called my wife. I told her I was heading to the ER at a hospital about a mile from my home, still about an hour away from where I was at the moment. I thought I was bleeding internally.

At the ER they took a urine sample, which still had blood in it. They told me to get a urologist and that I probably had bladder cancer. They were all so perfunctory about it. Sort of shocked me.

I went to the urologist recommended by the ER doctors and had an exam and they scheduled a cystoscopy. Because of the problem I had as a child with blood vessels bursting in my bladder, they did the cystoscopy under general anesthesia in case something went wrong. I went home with a catheter installed (not fun).

I received a call about 2 days later with the diagnosis, and a week later talked to the doctor who suggested chemo prior to a radical cystectomy with an external pouch as his recommended diversion.

What did I know? I trusted his opinion.

October 2012: beginning chemo and considering a neobladder

I met with an oncologist about chemo and mentioned the diversion my first doctor recommended prior. Both the doctor and the nurse meeting with me said, "Get another opinion. You are too young to get the 'pouch' and you should definitely explore a neobladder."

I made an appointment with doctors at the University of North Carolina for a second opinion. They suggested a neobladder too. I made another appointment (that's number 3 for those keeping track) with a recommendation from a doctor friend of mine. They also recommended a neobladder; 2 out of 3 doctors liked the neobladder for my situation - so a neobladder it is! Around this same time, I started chemo with Gemzar and cisplatin.

November 2012: bladder spasms

I completed two rounds of chemo - 2 weeks on, one week off. Luckily, I was on my off week when Thanksgiving hit so I could enjoy that meal without the usual bit of nausea.

I wasn't affected by nausea too much – never took the pills they gave me for that, in fact, I seemed to be gaining weight on chemo. Who does that? Me, I guess.

I started getting very painful spasms in my bladder when urinating, as a result, they gave me pills for the spasms that turned my urine bright orange. Very "groovy" peeing that November.

The medicine my team provided me did not impact the pain at all and so because of that they did another cystoscopy and found the tumors in my bladder were still growing despite the chemo so far. It became necessary to stop the chemo and schedule surgery ASAP.

January 2013: surgery day arrives

My cystectomy and diversion surgery were scheduled for January 15, 2013. I checked in on January 14 for my surgery and was wheeled into the operating room on January 15th.

To be continued...

Go get popcorn – this is going to get good.

No worries – you know the ending already – I slew the dragon and ended up on a box of Wheaties. Kidding, but 8 years later, and no dragons returned to my kingdom!

See you in the next installment!