Steady as she goes..

So I had my endo appt last week. Pretty darn BLAH! I guess I was hoping for something big to happen and nothing really did. I had to have a form filled out for my mom's insurance company (who threw me off the plan AGAIN!) so I got that done. I also spoke with her about all that I'd discovered throughout my package sending mission. I had talked to the nurse C and gave him Dr. L's number in Seattle to call to find out about the Pfizer trial and guess what... big surprise... C didn't pass along the entire message!!!! I was so angry but at the same time it was completely expected otherwise I figure I would have heard something much sooner. So in the end, she never talked with anyone.

BUT.. the great super magical news was that I PEED MY FIRST EVER NORMAL PEE in over 7 years! WOW! It was 228 (or very close to that.. forget now!) and normal is 50-250! It was in the normal range for once! Couldn't believe it! My blood still isn't showing normal levels yet.. I don't really know why that is, but it's still more than double the high end of normal and my ACTH is still more than triple what it should be. My endo thinks that it's the radiation kicking in now because my numbers are still changing without my dose of caber changing.

So the plan right now..? Wait. Wait wait wait! I hate waiting. But since everything is moving in the right direction for the most part, we're going to wait and see what happens. I know for sure that I will not rush to surgery if something is working now.. there would just be no logic behind surgery at the moment, so that's off the table again. I think I will still get copies of my new MRI to send away though and see what just a couple of the drs think.. Mostly interested in hearing from Dr. P and Dr. M at this point. The others wanted to complicate things, but these two were prepared to just go in, scrape things out and be done with it. And the report from the local radiologist said that's only about 1mm left of "stuff".. it's impossible at that size to see if it's tumor, remaining gland or some of both, but it's "rimming" the bottom of my sella. Also, the top of my sella is now caved in because it's mostly empty in there, so that's a really positive thing from the sounds of it. I'll probably have another scan in about 6 months time. And 4 months from now, I have my next endo appt. If my cortisol stays the same or goes down more, I'll stick with caber and try to decrease my dose (staying at this high dose will eventually lead to a heart valve leak.) and I also talked to her about trying growth hormone. We've talked about it many times before, she's against it, and I've never cared too much either way, however now that my cortisol is down, I really feel that even a low dose would help me to rebuild muscle, so she said that if my cortisol stays down, she'll let me start it! Annnd, if things should happen to go the other way again, she'll start me on SOM230 which she found out that we can get now! Woot! So either way, there should be some changes coming in 4 months.. hopefully it'll be a good thing either way it goes!

So if you're looking for me.. I'll just be waiting around.... :P