Wednesday, May 29, 2013
I took last week off to have a staycation and get some things done around the house. I was thwarted the first couple of days by rain. Took care of a few things the next couple of days and then the plague set in. The girls each came down with a mild fever and some bowel issues. It eventually caught up with me and took me down for a several days. After the worst of it had passed, it seemed to linger a couple of days longer than seemed reasonable. After sleeping through most of Memorial Day it finally occurred to me that I had practically eaten nothing for four days while continuing to faithfully take all of my medications. With no food in my system, the medicines overcompensated with the pain killers knocking me out for most of the day while the prescription laxative kept me occupied in other ways. Once I realized this, I stopped taking the laxative to give my system a chance to catch up. The next day I felt much better and was finally able to eat something. This was perhaps the worst staycation ever.
Tuesday I went back to NIH to follow up on the last visit and get their take on all of the scans that they took during the last session. It was largely more of the same and they didn't really have anything new to offer that I hadn't already heard. The scans show that it has progressed a littl further when compared to the original scans taken back in December. My PSA for the day was back up to 1.41 which they were trying to claim was an upward trend when you took mother last three readings two of which were taken on the same day of my last visit. It almost feels like they are desperately trying to find an indicator that things are regressing. They are still advocating that I enter this study that they have been promoting all along only now the approach is more of an "it can't hurt" message. They are recommending that I get on Aberaterone either via their study or through my oncologist. The write up for the study says that it's for patients whose treatment has stopped working but now they are saying that it would be better to start it before things get to that point. When I tried to get from them what benefit I would expect to get from the treatment, they mentioned that it had been known to extend the life of patients by 4 or 5 months but that if I took it I may never really know what benefit, if any I recieved from it. It all seems a little thin to me. When I last saw my oncologist he said that Aberaterone would be the next treatment that he would go to when it became necessary but he didnt seem concerned that it was needed at this point. I asked them to write up their recommendations for my doctor and I'll discuss it with him further at my next appointment. The biggest frustration in all of this is the uncertainty of it all. Nobody can say anything with any certainty, they can only speak in potential outcomes.
Today I returned to the office a little worse form the wear. After feeling no pain over the days I was sick and not eating, now that things have returned to normal, so have the normal aches and pains. They were a little elevated today, but that tends to be the norm the day after spending the day trekking down to NIH. I didn't sleep very well last night which probably contributed to it all today. Hopefully tomorrow will even out a little.
Posted by Clint Brown at 8:51 PM