It's been a while, so I'll catch you up.
After the first month of Xeloda, which has ramped up the pain margin considerably, my tumor markers went up. But Dr. Bouncy says that Xeloda sometimes takes a while to kick in, so he wanted me to continue for another month. With some reluctance, I agreed; in one hand, giving the tumors more time to grow unchecked is really scary when they are at the level they are at with me - on the other hand, my treatment options are rapidly running out, so we have to give any reasonable possibility the old college try.
So this past week I had a tumor marker check, a PET/CT scan, and an MRI scan (to check up on that pesky softball-sized soft tissue tumor in my left pelvis, which I think has adhesions and is a constant source of tearing pain). I've never had serious pain with the scans before, but the CT scan was an agony this time. I really thought I wasn't going to make it to the end without moving, and frankly I was just short of tears by the time they let me out. On the bright side, that made the MRI seem less awful than it would have been otherwise - it was painful, but since they let you know how many minutes each scan was going to take, I could sort of count it down. When you don't have a sense of time passing, pain can seem overwhelming; when you know you only have to bear it for another three minutes, you can talk yourself through it.
I won't know how the scans turn out until next Thursday, when I see Dr. Bouncy and make plans for the immediate future. I can potentially find out the results of the tumor marker test on Tuesday - I'm not sure whether I will ask or not. There are times when knowing the answer IS worse than not knowing for sure...
The other health-related issue is that for a couple months now the pain in my hip has become more and more debilitating, to the point where for weeks I was getting less than two hours of sleep per day. Often none at all. Added to this, I became nearly completely bed-bound. Between the exhaustion and the pain, I could no longer put off the inevitable - I quit the LDN and went to the palliative care clinic, where they prescribed narcotics.
As expected, I currently am getting more side effects than benefit... but I am getting a bit more sleep, which at least keeps me strong enough to avoid indulging in distressing crying jags during the wee small hours of the night (hard on me, since it deregulates an already weak breathing system, and scary for poor Scott - I'm not generally a crier, so he correctly interprets the sudden change as a major issue).
On the bright side, Christmas was family-filled and everything that Christmas should be. I am unbelievably grateful for my kind, loving, supportive (and talented!) family and friends. If one has to be in pain, you couldn't ask for better distractions.