Mets Day 95 - nightime incontenence frustrations

Today Jennifer and I met with Dr. Fraizer, who was happy to see that the scans were all clear.  For now, the cancer concerns are on the back burner.  He warned that I continue to be at high risk for recurrence, but until the scans show something, there is no use in worrying about it. 

Most of the appointment was spend discussing my ongoing problems with nighttime incontinence.  I noted how, last night, I had gone to the bathroom at 1:5, 3:30, 5:30, and 7:30 am, and my Depends was still soaking.  That has been a typical nightly experience for the past month.  Either I am not completely emptying my neobladder (despite sitting on the toilet for 10+ minutes each time and peeing in starts and stops), or my kidneys are in hyperdrive at night.  Ether way, when I sleep, my pelvic floor muscles relax such that I leak urine. I've tried not drinking anything past 8 pm, and trying extra hard to make sure my neobladder is empty before going to bed, but it seems to make little difference. 

Dr. Fraizer said that nighttime incontinence is the most common complaint regarding neobladders.  I know from the literature that between 25-40% of neobladder patients have this complaint.  I didn't fully appreciate prior to surgery what a dramatic conseqience nighttime incontinence could have on my quality of life.  To all bladder cancer patients considering a neobladder, think long and hard about what I'm going through, and decide if the benefits of not having an external bag or the need to self-catheterize is worth the trade-off.  I had let the decision of whether to have a neobladder or an ileal conduit to the surgeon, depending on how extensive the cancer seemed.  I had told him that, if he would tell that the cancer had metastasized, then I'd prefer an IC instead of having to train a neobladder.  He thought I was ok.  Oh well.  It is what it is. 

Dr. Fraizer said that the line of attack to deal with the nighttime incontinence should be as follows, in order:  (1) work with GW's pelvic floor nurse, who specializes in helping strengthen the pelvic floor in both men and women; (2) if that does not work after several months, consider a type of procedure, like a pelvic sling for men, that can help me be continent; (3) if that does not work, consider other more radical options, such as artificial sphincters.  I intend to follow up with step 1 immediately -- I has not at all satisfied with the results from the physical therapist that I saw in June, and hope that GW's therapist will be able to bring around better results. 

I've been hopeful that the problem with nighttime incontinence would dissipate with time.  The best I felt was in the first couple of weeks in June, when I could sleep without a diaper (although I was still getting up every couple of hours).  Dr. Fraizer said that the regression that I was experiencing was common, and warned that I would continue to experience ups and downs for the next several months. 


So it looks like I'll be continuing with Depends for a while.  I've tried external catheters, but putting that thing on and taking it off is a pain.  It's basically a thick condom with adhesive, which connects to a catheter line and drain bag.  Having that tube snaking around my legs while I sleep is worse than the diaper. 

Jennifer compares my mental state during the day to having a new baby, but without any of the joy.  Others have observed that it's like being a little drunk all the time, with little confidence in the accuracy of my judgments.  I have found it hard to read, and harder to retain, anything that requires concentrated focus, such as legal briefs.  It's deeply frustrating to me to have this ongoing state of impairment.  I have continued to put my return to work on hold, since I have little ability to predict how I will be doing each day. At some point, I'm going to have to decide what I'm going to do in the longer term, but right now I'm continuing to defer that decision pending attempts at resolution.  I know that I'll have to make that decision at some point -- as my mom used to say when encouraging me to make a decision (and using a particularly prescient metaphor):  pee or get off the pot.