Mets Day 124 - U. Chicago follow-up

This afternoon Dr. Steinberg's chief urology resident, Dr. Large (I may have the spelling wrong - it's pronounced LAR-shee) called me to see how I was doing.  I described the issues that I've been experiencing post-surgery, the diagnosis of the neobladder stricture, and how Dr. Frazier hammered through several catheters to open it back up.  Dr. Large was impressed that I was not under general anesthesia while they did that.  He said that strictures occurred in about 10% of neobladder patients.  He said that the stricture could re-form, and sometimes it took three or four procedures to persuade the scar tissue to not reform.  He said that, if it did re-form, the next step would be to cut open the structure using the cytoscope, or perhaps burn off the scar tissue, again using the cytoscope.  He said that I'd be under anesthesia for those procedures.  He also added that self-catheterization might be required, maybe not every day, but every second or third day, until the scar tissue learned to not reform and close the drain hole.

We discussed how these complications were adversely affecting my sleep.  He commiserated, and said that the sleep patterns should improve once the underlying problems were solved.  But he implied that it could take some time before that happened.  I recalled how I was informed that nighttime incontinence occurred in about 25% of neobladder patients, and strictures occurred in about 10%, but I did not appreciate how those complications would interrupt my sleep patterns as they have.  There was simply no mention of sleep deprivation in the side effects, yet for me it has been the thing that has most restricted my return to work or otherwise lead a semi-normal life.

Dr. Large was also happy to hear that my initial scan had been clear.  I noted how I was in the Dendreon control group, and was not otherwise receiving any therapy.  He said that did not surprise him, because there was no proven therapy to be given to someone in my position.  We just continue to wait and see whether the cancer comes back.  So it was nice that the University of Chicago followed up on me.  All in all, I think they did a good job. 

Yesterday I went into work for a few hours, and chatted with one of may partners.  He had read my Day 119 post about what to say to people who ask me how I'm doing.  He said I needed to work out some sort of semaphore system so people would know if I didn't want to talk about cancer that day.  I told him that, for now, my cancer was sort of like my tinnitus -- it was always there, a constant presence, but that if I chose to focus on it, I'd probably go crazy.  As I type this, my tinnitus is going strong in both ears, probably in the 60 decibel range, at about 9500 Hz in my left ear, and 11,000 Hz in my right ear.  I've lived with it since age 38 or so.  There is nothing I can do about it.  I have to simply ignore it, or else it will drown out everything else.  Psychologically, my cancer isn't much different.  The knowledge is constant.  There is nothing I can do about it.  As long as it's not causing my physical pain, then I prefer to not focus on it.  So when people ask how I'm doing, and I chose to engage them with a longer answer, I will still nonetheless probably not talk about the cancer, because there's not a whole lot to say. 

It's helpful to me if people tell me that they've been reading my blog, because that means that I don't need to update them on all of the big picture events.  Those people usually will not simply ask me how I'm doing, but instead will say something like, "I've been reading your blog.  Anything new?"  That lets me thank them and either give a short answer, or thank them, or engage them, depending on my mood.