So much going on and most days I don't know which way is up anymore.
First and foremost, after much thought we have decided that I'm not going to be in the study at Duke University. Part of it was because of money, part was because of time and not having any family (besides Nancy who can only do so much herself), part was because I have a real problem being a part of a study that basically charges people to be in it, and the final straw was all this bull with now not knowing for sure if it's medullary cancer in my liver. I feel it's very important for me to find out what is going on there. So no study for me and I wish everyone in the study well. Hopefully they will pave the way for this study to extend to other centers and hopefully then I will be able to enter the study somewhere closer to home.
So... Dr. L had said she wanted to see me THIS Wednesday but turns out they scheduled me for next Wednesday instead which makes no sense considering I told them I most likely wouldn't be around. I really needed the appointment this week because I'm having so many problems right now. I have dry skin, excessive thirst, frequent urination, gaining weight in my face, dizzyness, I've had headaches that are turning into migraines for almost two weeks now, bone/muscle pain, nausea, and vomiting. I can't get ahold of ANY doctor to help me out either.
Dr. BC's nurse pract, H, called me yesterday and told me that they are going to want me to come to Tampa for a liver ultrasound, liver biopsy, and Octreotide scan probably sometime next week. She also told me that my test results from the bloodwork and stim test we had here were never faxed to them and SHE can't get ahold of anyone to get them faxed either. She asked how I was feeling and when I told her she said "Are you STILL on those steriods?". When I told her yes she said that is probably what my problem is. I tried calling Dr. L and got told that my test results were on her desk but she wasn't in so they couldn't give me the results until she signed off on them. I'm just so sick of this. :(
Today H called me again and told me that they want me there the 22nd for the liver biopsy (but no time or anything yet.. gee thanks guys UGH) and then on the 23rd and 24th I'm to have the Octreotide scan. So now we have to come up with the money for that trip (hotel for three nights, food, gas, etc) somehow. Do they not understand that it's not only rich people who get cancer? That we poor people get it too and how the hell do we pull this money out of our butts?? I mean seriously!
Anyway- so then Dr. L's new nurse, S, called and left a message saying that my test results were in but Dr. L had to look at them before they could give me the results and that should be tomorrow. So I have to call bright and early tomorrow morning and TRY to get someone besides some dumbarse receptionist on the phone so I can find out what's going on. I need to get off these steriods or at least have them lowered some more. I've been reading and the Dexamethasone is something I should only be taking once every THREE days if that at this point. I'm still on a half mg every stinking day though!! I'm tired of feeling like hell and being sick. Vin doesn't know but I throw up at least once a day now. :(
On a funny note, that first stupid pediatric endocrinologist the kids went to (Dr. NW) sent me a CERTIFIED letter telling me that she would no longer care for my kids. Ummmmm I fired you you, DUH. In fact, I have the copy of the email where I fired you the day BEFORE you typed up your stupid letter!! How retarded is that?? I mean really can we grow up here? All this letter was was a "you can't fire me because I quit" letter. Geez, and they give people like this degrees and licenses to practice. Unreal!
So now tomorrow I have to tell Dr. Wells for sure that I can't be in the study. I'm okay with that. A little scared but okay. I'm scared because I was reading a book I got from a sweet lady from amitymama (just a real quick story here. This lady lost one of her children last year to a farming accident. I can't even imagine her pain or how she feels yet she has so far sent ME two pairs of socks, 2 cards, and in the mail the other day two cancer books- Chicken Soup for the Survivor's Soul and Cancer Has It's Privileges. I am so humbled that even in her pain and heartache she thinks of me.) and in it was a passage from a man whose wife had medullary cancer that spread to her bones. She was given 5 years to live and died in 3 1/2. That scares the hell out of me to be honest. I know I don't have the cancer in my bones yet but the chances are pretty high that it will get there eventually. Then what? I'm not ready to die. I don't want to die. Why the hell is this happening to me? I have kids to watch grow up. I have to be here. This just sucks!
*sigh* So anyway- tomorrow I will update again on what my test results say, whether or not I get off these stupid steriods, and hopefully what time the liver biopsy is.
I have to call Dr. R tomorrow and try to set up some kind of consultation to see if he will operate on the kids. I'm really hoping he will because if we go to Tampa then the kids are going to have to miss a day of school just to go down for a consultation again. I mean we WILL if we have to that's not a problem. I'm just trying to keep them from getting behind in their classes is all.
So Dr. L, Dr. R, H, and who knows who else I will have to talk to tomorrow.