A need a nap!

Well, today started off with a bang! Or rather, a ring! Dr. Prevedello from OSU called bright and early this morning, woke me up in fact! He started off by asking a few questions, then just cut to the chase and said he wanted an IPSS, and then he would do surgery. He said the results from the IPSS would take time, so I would have to make two trips there, but that's it, he would do the surgery! So while I slowly woke up and started processing things, I began thinking, "oh no, he's THAT one!"... he's the one I've feared who says "haha! They can't fix you, but I will!".. everything he was saying - it was all just too picture perfect and he was making big promises. So I asked him why he feels it would be so easy when I've been refused by a few other surgeons and isn't he worried about the fact that I've had so much radiation? He said that it's certainly a risk, but that because of how he fixes leaks, he wasn't worried very much about it. He said he takes a piece from inside your nose to patch it up. He told me just last week he operated on someone very similar to me that had radiation twice and the surgery was a success.. he tooted his own horn some more with various other statistics as well. He asked my age and told me that it's upsetting to him that I've lost so much of my life already, and he wants to put a stop to that. I also asked him about more radiation, and he said a big "NO WAY" saying that with the doses I've had, I'm looking at other kinds of tumors and cancers already, and I could very well lose my vision if I had more radiation. So that wasn't reasonable. So then we talked a bit more, I asked about financial assistance and there are payment packages, but he wasn't too sure of specifics. Then I asked if he knew about SOM - wasn't familiar, so I explained it a bit and he said that he understands my wanting to try it. Then he kinda just said, "well, whenever you're ready, I'm ready!".. and he just mentioned the IPSS again. And a light bulb came on over my head. I DON'T WANT AN IPSS! I realized that no dr needs one because what I want is someone to just go in, regardless of which side things might be on, and just scrape it out, so I told him that and he said "you know what? you're right!". So he said if I decided on doing it, he would just do a radical complete hypophysectomy, which in simple terms means, he would go in there and scrape everything out like gutting a pumpkin!! This made me very happy! He had already said that it looked to him like I had a tiny shriveled pit with a small tumor under the right side sitting on the stalk, and then he realized that my pit isn't producing any other hormones anyways, so there's no point trying to salvage any of it, so he agreed, if I decided to move forward with things, he would just go in there, and scrape it all out!

So I'm not sure what I'm thinking now. I still would like to hear more from others, primarily Dr. Mayberg and Dr. McCutcheon. But it's sounding like although very dangerous, surgery IS possible. It's a realistic thing however to believe that a tumor could still come back since it's pretty common with these tumors and because I seem to be good at making them!!

I also received another phone call from Dr. Ludlam this morning. He was in touch with his Novartis contacts and they refused me. Because of how they're handling this trial this time, they had to refuse International Compassionate Use patients, aka those who've had radiation - me. :( But he was given the contact info for someone at Pfizer, a Canadian drug company and he called them. They said I may be a suitable candidate, however they only deal with dr referrals, so I need to have my dr get me into the trial. So now I'm waiting to hear back from my endo and hoping like hell that she'll help me. 


I don't know for sure if I want to try pit surgery or not yet.. I feel like there's about as many pros as there are cons, if not more cons. But regardless, I feel like it would be foolish to go to surgery without first trying SOM230 because a) surgery could kill me, and b) because I could have surgery and develop a new tumor soon after, for sure not be able to have more surgery and need a medicine anyways! So I truly feel like trying SOM is my best next step. Surgery will still always be there, and hey, the technology may even become better by the time I'm ready? I just don't know. :/ 


I also got two consent forms in the mail today.. my endo apparently agreed to help me locate some of my test results! It's just from two places though, so I'll still have to take on some costs, but this will save me a couple hundred dollars at least! Yay! 


It's funny how many messages of support and 'admiration' I've received lately. People have said how proud they are of me for fighting and standing up for myself, and some people have said "I wish I could do that for myself too!".. the stupid part is that *I* have been telling others to do this sort of thing for years, but I never did it myself. I have sat patiently waiting, nodding my head to my drs, and just letting time pass, but not doing 'everything possible' like I have always told others to do. *sighs*.. well, I suppose the important part is that I'm doing something about it all now. And I hope others will not only be proud of me but also learn from me and learn to take action instead of waiting. One thing I learned quite awhile ago is that Drs won't come to you - you must go to them. If you have a test done, unless there's something seriously wrong - they don't usually call you right away with results - if you want them, you must call! Also if you miss an appointment, they have 30 other patients waiting and ready to take your spot. So if you're not happy, oh well! You can be replaced. You're just a pay check to most drs - very sad, yet very true. My uncle always says "the squeaky wheel gets the grease" and I used to not believe it, but now I do. I used to think that if I made too much noise, I would just piss people/drs off and then they wouldn't help me, but with this bold move I've made to seek out help, I've been totally shocked and amazed at how making noise really gets attention! I've also done myself a service by educating myself as much as possible so that I can speak knowledgeably and that seems to have gained me a level of respect with everyone because I know what I'm talking about!! I also have labs and test results that clearly support my case.. the blood/pee don't lie!! So.. I guess for anyone seeing this, if you end up in a position like me.. educate yourself, and take risks.. nobody else will fight for your life the way YOU can. And don't sit quietly waiting for help to come to you, GO FIND IT! Never lose HOPE!

This totally feels like it's become a full time job! Between phone calls, updating family and friends, locating paper work, filling out forms, sending authorizations, emails, mailing packages... geez, I wish the pay check mirrored the work! Although - if I got my life back - I suppose that's payment enough. :)