Mets Day 53 - incremental progress

The six days since my SP tube was removed have been marked by a steady decrease in the level of pain, and a steady increase in my ability to move.  While sitting with good posture while wearing a belt (which sits right over the SPT site) is is still difficult for more than than a few minutes (as I found at church yesterday), for the past few days I have been able to go without any painkillers. 

The biggest issue to my ongoing recovery continues to be the lack of a good night's sleep, due the the need to get up every two hours or so and void the neobladder.  Each night I set my iPhone alarm, and find that I need it for the first time, but thereafter I don't.  This tells me that I don't succeed in going back to deep sleep after the first time I wake up.  As a result, during the day my mind feels wooly and dull.  Physically, I lack energy.  I usually take naps during the day.  It is a sedentary life, and I don't like it. 

I have read, and have been told, that most neobladder patients see steady improvement in their nighttime continence, and can get more sleep, but it can take several months.  I'm going to my first meeting with the neobladder physical therapist on Thursday, so I expect to have more information then.  Until I consistently get a decent night's sleep, I don't think I'm in a position to return to work.  (I am thinking about going into to office tomorrow, however, just to catch up with everyone.  It will depend on how I feel tomorrow morning.)

Meanwhile, we continue to evaluate clinical trial options.  We learned this morning that the Michigan trial involving Sunitinib had been recently closed, so that no longer is an option. After driving to Norfolk last week to learn more about the Dendreon trial, Jennifer and I decided that we didn't want to be making that drive twice a week for a prolonged period of time.  We continue to evaluate other locations for the Dendreon trial, including Fox Chase in Philadelphia, and are awaiting word on whether and when Hopkins will open its own Dendreon trial. 

I should note that none of these clinical trials are focused on cures.  There is no known cure for metastatic bladder cancer, and whether or not there are distant metasteses found, the trials are only intended to try to extend life, not eradicate the disease.  The trials are by definition experimental in nature, and all involve unproven approaches.  I think it is important to have the mindset that no trial will cure me.  Among the criteria by which I am evaluating a potential trial are the likelihood of a benefit, and the severity of the potential side effects.  I am not eager to degrade my quality of life by going through an unproven and experimental treatment.   he Dendreon trial has minimal side effects, and some upside, so that appears to be the path we'll take, once we can find a better location. 

For now, the plan for the next month or so is to master nighttime continence, consistently get a good night's sleep, and see what happens with the Dendreon clinical trial.