Updates

Last Friday I went in for my follow up ultrasound to peek at that blasted ovary....Today I saw the doctor for the results. The growth has gone back down to a smaller size and he is no longer as concerned. Good news!! My next appointment is next year. So I'll cross this drama off my list! What a relief...

Later this afternoon I also had another appointment with my primary. This was my second attempt to meet with him. My first attempt ended when I left his waiting room after two hours of waiting. Who has that kind of time to sit and wait??? Not me, I had another doctors appointment that I had already pushed back while I was sitting in the waiting room. So! I got smart and made the first appointment once they returned from lunch. Note to self....I only had to wait one hour!

I have to say the reason I didn't walk away from this doctor forever is that I knew that he would take his time and care with me. He would do what ever I asked of him...and I was right. Today I told him how much I disliked my oncologist and put simply I don't trust him. He did say that we couldn't discount the fact that I have been stable all this time and that may be a direct result of his care. Point taken but once I said I didn't trust him my primary stopped defending him and asked me what I wanted. I told him that in an ideal world I would like to be treated by an oncologist who is very familiar with desmoids. I feel like a guinea pig and I'd like to feel like I wasn't someone's medical experiment.

He said that he would put in a request for a second opinion at City of Hope. While I don't really think that is the best place for me, it's a start and he feels most likely I will be referred to USC Cancer Center. Perfect! I know there are doctors there that have atleast heard of desmoid tumors and know a little something about how they behave. So today was a good day :-)

My primary did say that he didn't like that with all the blood work that I have had they weren't at all comprehensive and he ordered a full work-up along with a mamogram...after all I'm 40 now. Yea, yea, yea...so everyone keeps reminding me. I argued (half heartedly) that my gyno said I didn't have to until next year to which he replied, "with everyone else I'd say that is true but with you I would like to do it a year ahead. I need to keep a close eye on you, you don't have the best luck!" Finally, someone gets just how "special" I am!!

They expect the referral to come back before my follow up with my onco on May 5th. At that time I can chose to see what he has to say or give him the finger :-) The cooperation of Blue Shield will dictate the course I take. Please pray that the powers that be at good ole Blue Shield will finally see that they could have saved TONS of $$ if only they had sent me to a doc that actually has heard of desmoids and more importantly that the hell I've been through for the past 3 years has been torture only exacerbated by their unwillingness to allow me to see a slightly more expensive doctor in an effort to treat me more like a human and less like a lab rat.

I'll keep you posted :-)
Stacey