19 August 2013

The Surreal Life

It seems like there hasn't been a lot to update about, but then I realize it has been because we have actually adjusted to the new routines and way of life.

C now drives out to his office on a fairly regular basis, he is able to start taking on tasks out in the yard, we take the girls to the various activities and events, we were able to travel to Chincoteague for a family vacation, my focus is slowly beginning to shift to homeschooling the girls and their fall routines and activities.  We are starting to look at flights to TX so that we can visit family and friends this fall, even talking about plans for next year.  Sometimes it seems like we could pretend the last 9 months haven't happened, except for the little changes that from the outside no one would notice.  

Little changes like I now drive everywhere we go as a family, when C gets up in the morning he has to sit for awhile with his blanket draped over his shoulders while he stretches and lets his pain medicine take effect, the time he is able to spend working on the house or yard takes a toll as he exhausts easily, the majority of our adult conversations are about his pain levels, inquiring whether or when he took his meds, or the latest in the research either of us have done regarding prostate cancer and it's treatment.  Our wonderful neighbor has taken it upon himself to mow our yard on a regular basis, taking that very time consuming task off of C's plate and allowing him to focus on other things. After we accepted the reality of him not being able to ride his motorcycle, including looking at bending the rules and finding one that has a sidecar that would give more stability making a fall even less likely, we seemed to hit a good place.  It has been a long time since either of us has needed to break down in tears to let the sadness, anger, and frustration out.

Of course it seems like there is a perpetual dark cloud over it all, no matter how good he feels, the blood work always seems to give us something to fret over.  Whether it is low iron levels, or not low iron levels, other levels that we are told not to worry about, but never sound good, and his ever-fluctuating PSA, fire drills seem part of our routine as well.  The current one is after a long stretch of his PSA staying in the low to mid 1s, the last two readings from separate labs showed the number going back up. 

So now I write this post while waiting for C to be called back for his CT scan here at NIH, our appointment with the doctor following his bloodwork, EKG, scans will tell us whether we will start the study today or if it still too early in C's treatment.  This is the roller coaster that makes my stomach churn.  On one hand you want them to tell you the current treatment is still working and to check back in a couple of months, on the other you want them to have the answer, that there is some miracle that will come of this study that will put a true end to this nightmare.