Friday, December 30
The craziness of my full time job came roaring back with a vengeance. This is after a delightful respite capped by the Christmas Day family get-together at Steve’s place. I worked exceedingly hard at keeping things straight – even constructing a written summary of the bigger issues to help guide me (attached). I was extremely happy NOT to find myself flustered.
I continue to shower enormous praise on all the folks with whom I interface at OHSU. My current star is Richard who has worked tireless over the past week with MODA and XTANDI Support Solutions to overcome denials of insurance coverage for Enzalutamide, the cornerstone drug for my next phase of treatment. Claire, the biopsy trial coordinator, and Beer’s nurses, Pam and Erin, also ROCK! They have put so much time and effort into me that I feel like I am their only patient…….Incredible!
A shout out also to the other kind and courteous folks at MODA, UCSF, XTANDI, Peace Health and Oregon Imaging who helped me navigate through this hectic time.
Except for a current hiccup this very morning concerning actually receiving my first shipment of Enzalutamide, things feel considerably calmer. I decided not to participate in the biopsy trial at OHSU – deluge of pretests, scheduling issues and a low probability of obtaining adequate tumor sample due to its decreased size (a good problem). I hope to start Enzalutamide presently. All seems in order for the January 17 follow up appointment with Dr. Small and the subsequent PMSA PET Scan at UCSF. Finally, I see Dr. Beer on February 7 to assess the effectiveness of this new phase of treatment. Calmer!
A few notes before signing off:
On the dark side: PSA continues to inch up. Also recent bone scan shows two NEW foci of abnormal activity: My left hip and sacrum. They say this is compatible with progression of metastatic disease.
On the bright side: The recent CT Scan shows a further significant decrease in visible of liver lesions.
So it goes…………….Time to Relax and Breathe!
Or…………Go Play in the Woods
What a great support team you’ve put together, I’m sure that’s a huge comfort. And judging by your “Present Course” it’s clear you’ve fixed your rudderlessness, I was sure you would.
All my best as always my friend, and on to the new year we go, may it be a great one for you.
Skipper