Firstly, a disclosure — I have Bladder Cancer and I’m in remission. I found out I had bladder cancer in a strange way; every few days I would have dark pee. It wasn’t red pee, it didn’t look like borsch, it was just a bit reddish brown. Since I’m an old white guy (or just an old guy), I ignored it. What I didn’t ignore was when the bits started to come out. These bits looked like bits of hamburger. They were bits of my insides on the outside where they didn’t belong. My wife MADE me go to the doctors. He asked what was going on. I explained about the hamburger, and he referred me the urology department.
I couldn’t get the main guy for a few weeks, so I made an appointment with the physician’s assistant who it turned out was a young lady. The following week I met with her. She was very impressive and very competent. She asked me what was going on and I told her my hamburger story. By this time, I had looked on the internet, so I was getting suspicious about the source of my hamburger. My PA scheduled a CT scan in 3 days and a Cytoscope with the main man the following week.
The CT scan is a modern X-ray where they pass you through a hula hoop and inject you with contrast agent. Some noxious chemical that makes the pictures pretty. A few days later I reported for my Cytoscope. I met the main man, the urologist who told me that the CT scan revealed an 8mm thick tumor on the inner wall of my bladder. The Cytoscope was only confirmatory since he pretty much knew that it was a malignant bladder cancer tumor. Oh, shit!
The Cytoscope consists of poking a camera into the bladder to see what’s going on. The un-fun part is how they get in in there. Suffice it to say that it hurts, not as much as riding a bicycle without a seat, but it hurts. It also feels really weird. At this point I have to acknowledge that the female of our species is a lot tougher and resilient than the male since they undergo such humiliating examinations on a more regular basis. Anyway, I got to visit with my tumor. It looked like red cauliflower.
A week later they went in again with the Cytoscope, this time with a hot wire loop to capture and remove the tumors. I was under anesthetic for this part of the story. Two weeks later they did it again, this time taking biopsies to be sure they got all of the bad hamburger. Two weeks later I started on a weekly course of BCG infusions into my bladder — yes, using the same way in as before and equally appealing. For those unfamiliar with it, BCG is a live tuberculosis vaccine. They fill your bladder with it and demand that you not pee for the next two hours. When you do pee, you have to do it into a bucket of bleach to kill the live agent. It’s kind of like chemotherapy except its biotherapy.
A month after finishing up my six weeks of BCG treatments I had another Cytoscope. This revealed that all the tumor was gone but that I was growing calcium stones on the bladder wall where the tumor had been. These stones break up into smaller or larger bits that I have to pee out. The smaller bits are uncomfortable, the larger rocks are very exciting. Yeuch!
In the coming weeks I had another three BCG treatment sessions as part of a long-term preventative regime to stop the cancer coming back. In the meantime, I had to drink a minimum of half a gallon (2 quarts or 2 liters) of water per day. I turns out that smoking is the primary cause of bladder cancer so in deference to all those who have been working hard to keep me alive, I finally gave up the evil weed. Sadly, despite their best efforts I had two recurrences since my initial diagnosis and treatment. Both of these recurrences were described as ‘mild’, as if that made me feel better.
I should not complain but I will. I’m got tired of having bladder cancer. I’m got tired of having Cystoscopes and catheters stuck up my wedding tackle. I’m got tired of having the inside surface of my bladder scraped to remove malignant growths. I’m got tired of having BCG treatments every week that left me feeling like I had the flu. On the other hand, I didn’t get tired of looking at the grass from the green side.
I developed bladder stones that were very painful coming out. Then they got too big to come out on their own and they had to be broken up by laser. The lasers I built as a younger man were the size of a partner’s desk, so I was a little concerned about how they were going to get a laser into my bladder to attack the stones. Fortunately, technology has progressed since my younger days and with the advent of fiber optics and semiconductor lasers they got into my bladder the usual way, I was asleep at the time so didn’t experience the gory details.
I then contracted severe cystitis. The frequency of my bathroom trips sometimes reduced to 15 minutes. I was treated with various antibiotics that made me nauseous, and various other drugs to calm down the urge to pee. Eventually I developed hemorrhagic cystitis where you pee blood. I went to the emergency room, and they admitted me into the hospital. Next day a surgeon I didn’t know cauterized the bleeders inside my bladder under anesthetic. After I awoke, he came by to tell me that the cauterization would only last a month or two, and that it was time to seriously consider a cystectomy — the surgical removal of my bladder.
True to his prediction, the bleeding started again about six weeks later and I got scheduled for the cystectomy combined with prostatectomy. Once again, I found myself under the knife, except it was another robotic surgery. My bladder and prostate were removed, and I woke up with a small stoma on the lower right side of my abdomen where I attach an adhesive skin barrier and a urine bag. I change the kit twice a week and am now well adapted to using a bag.
During my bladder cancer journey, the hospital and clinic staff could not be kinder, especially considering the grumpy curmudgeon they had to deal with. I never used to be driven by my emotions, or at least I tried not to be, but since cancer entered my life, I have got more than a bit weepy at times. Fortunately, I am married to a rock who supports me even in my most irritable moments. I love her as much as I always have and as much as I am capable, albeit less than she deserves perhaps.
In summary, if you catch bladder cancer early (within 6 months) while it is superficial and before it invades the bladder muscle wall, the treatment is manageable and quite successful. This is especially true if you get the kind of dedicated and capable medical team who treated me. Most important of all, quit smoking and start drinking lots of water. If you notice dark pee, get a urine test looking for blood as soon as possible.