Yesterday I talked to Dr. Wells on the phone and he told me that after talking to Dr. Olsen he wants to make sure I have enough time to recover from the adrenal surgery before joining the study. That means that if we need to we will push back me joining the study by a week BUT I will definately be in this study. He said not to worry because he wants me in it. That helped alleviate so much tension and worry. I was so afraid it was going to be a repeat of NIH and I was going to be told sorry we don't want you if you can't do it NOW.
Dr. Wells is such a nice man and it just floors me that a doctor who is so accomplished, so sought after, and so respected would take such an interest in me. I hear he is like this to everyone though and that speaks volumes about him. I just wish the other doctors I've run across would learn a lesson from him.
Anyway- Dr Wells told me that he was going to call Dr Olsen (he is the surgeon who is going to do my surgery) and have him call me sometime soon. Within half an hour Dr. Olsen called me and started asking me questions so he could decide what route to take. He ended up telling me the best news I have heard yet.
He wants/hopes to do a Bilateral Laproscopic Adrenal Sparing Surgery on me. What this means is that they leave a part of the adrenal gland and remove everything around/inside it including the tumor. The inside of the gland is called the medulla and the outside is called the cortex. By doing this surgery they hope to make it so I NEVER have another pheo. By leaving part of the adrenal gland it means that I won't have to be on replacement hormones and worry about the things that come along with that. VERY good news. VERY VERY good. :) Of course, there is a chance that the pheos could still come back and I could end up having to have all of my adrenal glands taken out later on but to me this is a risk worth taking. Even if it just buys me a few more years of not having to be on replacements then I'm willing to take it. I think the fact that the laparoscopic surgery is so much easier to recover from than the open surgery Tampa wanted to do helps too. I don't think I would want to go through two open surgeries you know?
Dr. Olsen also said he wants to schedule me for an MIBG scan and an Octreotide scan. Looks like alot of fun doesn't it? Ugh. LOL. I will also meet with him and then most likely the next week I will have my surgery.
So hopefully this is the beginning and things will work out. On the dark side, I have finished my Living Will, and appointed Vin to make decisions for me pertaining to healthcare. Now I just need to finish my will and have it all go to a Notary Public to be notarized. I want to make sure everything is set and ready before any of this takes place. I've also already listed what is to be done with my remains as well and Vinny knows what I want done.