Now what?

Ok, so much has changed in such a short amount of time. The Mayo Clinic is no longer an option for me.  The doctor who was assigned to my case has decided that he does not want me on as a charity care case. He feels that my diagnosis will require more in depth treatment and should be dealt with closer to home. So, now what? We had attempted to find someone in the area but were assured by my doctor that there were no competent sugeons in the area. So, again...now what?

My first instinct was to shut down. We found out the morning following my benefit, where I felt so much love and had so much hope that I slept like a log for the first time in months. We have worked so hard to get this trip together. We have done nothing but plan and cry and plan and all for what? I wanted to curl up in a ball and just give up. The same benefit however, had shown me how many people I had in my corner and I couldn't just say "Ok, this is it" and throw in the towel. I got on line and began to do my own research. I went to the National Endocrine Surgery site and began researching the surgeons they had close by. It was a quick process as there were like four in New York. I began calling and found that there was one surgeon in Rochester...New York, not Rochester, Minnesota, who had experience with my tumor and all of the diagnosis that could come from it. He also does the surgery a different way, where he would not go through my stomach, which has been through enough surgeries thank you, but through my back. I spoke to his nurse and though he was booking out pretty far I think she took pity on me and has squeezed me in to meet with him Monday. I also spoke to Columbia and Mt. Sinai who were both VERY interested in removing my adrenal gland, but not in the actual diagnosing what type of hormones mine was producing. It has all been like getting run over with a truck. Only this truck hit more than just me. My families had all taken off time for me to be gone, one of them was even coming with me, and we had to cancel all of our reservations. Not to mention I felt really scared because I thought everyone would think that I was going to go spend the money on...I don't know, whatever someone would spend $1500 on. I also had my doctor in a panic and apparently the doctor in Minnesota was having some guilt as he began calling my endocrinologist with tons of concerns about where I would go for surgery, and it was just all REALLY overwhelming. Meanwhile, I am working and going on with my normal day to day like everything is fine. Everything is so not fine. I feel like I am starting all over. I have this tumor, I have a tentative diagnosis of hyperaldosteroism, and I have enough money to close for the 4 weeks and travel. Now, I also have places that would really like to add me to their numbers for surgery, but not for the diagnosing, and long term treatment. And I have this doctor in Mayo who is SOOO worried that I will fall into the wrong hands, but not worried enough to do it himself. So, now I see. I go on Monday to meet this surgeon. I am bringing a ton of paperwork and results and even better my friend, Kristen, the RN who also went with me to meet the endocrinologist. I am trying to stay optimistic, but am scared to hope. I also feel pretty alone and scared, and am having a hard time being normal. So,  I will update everyone Monday, and ask that you keep the prayers coming. And if life could find a way to put the other drama and stress on hold for a minute, I would appreciate it. Thank you all again for reading, I am amazed at how much this helps.