Warren’s Story

Part II

I took my catheter out and prepared to enjoy my recovery with all my problems behind me. I had my first Christmas celebration with gifts and stockings since my daughter's boyfriend wasn't Jewish and the kids wanted to do it. Of course, we threw a little Hanukkah Gelt into the stockings to make it ecumenical. The hooks for the stockings are still screwed into the mantle. Then we went out to the movies. I almost drove us into some wrong way traffic – maybe still under the influence of anesthesia. I made it through the movie without having to go to the rest room, but afterwards, I had a hard time urinating. By 3 AM it reached the point where I couldn't urinate at all. I drove myself to the ER and never felt so relieved to be catheterized. I drove home with the catheter which I was told to take out the next day. The next day was okay without the catheter, but by the middle of the night I was again unable to urinate, so back to the ER for a repeat performance. This time we left the catheter in until after my consultation with my urologist.
After 2 nights without sleep less than a week after the TURB, I was a wreck. So my wife and I sat in his office while my urologist told me that I had cancer – grade 3, but he didn't believe that, and carcinoma in-situ. I had cancer!… and we almost missed it! If it hadn't been for passing that clot, who knows what could have happened?!? I could be dead now. He said he got it all. It didn't invade the lamina propria. He said I would be fine, but it didn't register. We drove home in stunned silence. When we got home I told the kids. My daughter asked if I would be okay, and I didn't know. She started to cry. Her boyfriend held her and as I sat across from them, I cried along with her. Imagine this kid, my daughter's boyfriend, away from his family for Christmas, visiting our home for the first time, watching me melt down as my world came crashing down around me. Then started the task of calling the family. I ruined my brother's vacation. My mother made me promise that I would outlive her, and so it went, until I reached my brother-in-law, an oncologist, who asked me some questions and told me I should be fine. And we celebrated with pizza and beer.
Next started the treatment phase. My urologist didn't like BCG. He said he had better success with Mitomycin C. So a month after the TURB I began 8 weekly sessions of Mitomycin instillation which I had to hold for 2 hours and then empty. He told me I might develop a rash on my hands and I did. Then, two days after one of the treatments, I passed a kidney stone. I knew what was happening because I knew the stone was there since I was having semiannual CAT scans because 10 months before the bladder cancer my urologist had removed a Leydig cell tumor from my left testicle. Otherwise everything went fine until one day the catheterization was a little painful. It happens. I've scratched ear canals cleaning out ears. I've missed a vein or twenty drawing blood. So if one catheterization seems a bit rough, no big deal, except that when I emptied my bladder, the Mitomycin hit that raw area in my urethra (the tube that empties the bladder through the penis) and I developed urethritis. It hurt to urinate for the rest of the night and I was dripping pus from my penis. Now I knew what it felt like to have Gonorrhea! If that wasn't bad enough, the same thing happened after all the remaining treatments.
For 2 years I had cystoscopies every 3 months. I remained cancer free, so my urologist graduated me to every 6 months. And then, a few years ago, when he tried to do the cystoscopy he announced that I had a soft stricture (a narrowing of the urethra from scarring). He asked the nurse for a catheter which he shoved in to pop the stricture open, and then he proceeded with the cystoscopy. Then, with each cystoscopy, the stricture got worse. My urologist denied that it was getting worse, but he had to use  special instruments to dilate the stricture, and it was getting more painful. Even after an operative cystoscopy for biopsies the stricture recurred. I started asking him for a second dose of lidocaine gel to make it easier, and then I asked him to give the second dose before he even got started and he said, you don't need another dose. We just have to give it longer to work, which he did, and it was a bit easier. But if he knew that, why did he put me through unnecessary pain?!?

wsilberstein Author