February 7th, 2005

Well over the weekend I finally got some decent sleep which felt really nice. I went to the store on Saturday with just Bret and picked up a few things we needed. I got somewhat tired but not too bad and having Bret with me made sure I didn't forget what I was doing. LOL

I emailed Dr. BC and his nurse practitioner as well telling them that it had been a week now since I had asked about the carcinoid syndrome and would like an answer. :( What is with doctors being so ignorant? I just don't get it!

I also emailed Dr. L telling her that she needs to contact me before Wednesday so I can catch her up on what is going on. I also told her that the adrenal function test needs to be ordered NOT discussed by Wednesday. I told her she can call me anytime this week and if she doesn't then she needs to be prepared to alott me a half hour of her time on Wednesday. So she was given a choice. If she doesn't call me before Wednesday then I WILL be staying in that office until we go over EVERYTHING.

I didn't get my blood drawn today or turn in the urine sample. Halfway to the lab I realized that I forgot the paperwork I needed so I had to call them and just tell them I will do it after my appointment on Wednesday. :( It seems that NOTHING about the after part of this surgery is going right. This stuff should all be done already darnit.

The study- some people have asked about the study. We're discussing it right now. We've found some things out including that our insurance is charged for all the CT scans and bloodwork they do during the study. What the insurance doesn't pay we have to pay. Nice isn't it? I play guinea pig AND I pay for everything AND pay my own gas AND pay for daycare and in return I get a maintenance drug that sounds like the ones that are already out there. So anyway- we're trying to think about everything to make the best decision.

I also need to contact Dr. LK to see if he will come on board as my oncologist. He knows MEN, MTC, carcinoid tumors, and neuroendocrine tumors so he's a good person to have on board.

Today I felt better than I have in a very long time. I have energy and didn't feel the least bit tired. It's honestly been over a year since I've felt like that. Vin seems to be getting a cold (NOT good for me because the Flurinef suppressed my immune system) so I made some homemade chicken soup for dinner and then had enough energy to premake some eggplant parmisan for dinner tomorrow. :) I was so proud of myself and it felt good getting something done. I also worked on my knitting a little more (I've unraveled the same scarf three times now) and will probably finish my first scarf by bedtime.

Tomorrow I try to contact doctors again, hang out with Lil Man, maybe do some cleaning, and just see how I feel. Today was the first day of taking only 0.5mg of the Dexamethasone and so far so good. Now to get the adrenal test and hope that what's left of my adrenal gland is working so I can get off these steriods for good.