Well finally heard back from Dr. L's office this afternoon. The only test results that came back so far are the cortisol stim test (the adrenal function test) and my calcium levels. So as far as those go there is bad news and then there is worse news. :( My calcium levels are at 10.9 which isn't horribly high and honestly it's just past normal range but it is going up from when it was done in October meaning the hyperparathyroidism is getting worse. The stim test results showed that as of right now there is no adrenal function. The adrenal sparing surgery was a complete waste. :( I could just crawl into a ball and cry right now. She said that we will test it again later just in case it's just being lazy right now but not to hold my breath. So I've risked getting pheochromocytomas again later on and having to have that little piece of adrenal gland removed for nothing. That is such a hard hit right now.
My calcitonin test results and seratonin results weren't back yet but I hope they are by Tuesday because I have to be in Tampa on Wednesday. Here is my schedule for that-
Wednesday, February 23rd- 7:45am have blood drawn, 8:00am drink a bottle of laxative and get injection for Octreotide dye, Noon have first set of scans done (takes 1 1/2 hours). That night drink ANOTHER bottle of laxative. Thursday, February 24th- 8:00am get second set of scans (takes 3 hours), Friday, February 25th- 8:30am have ultrasound and liver biopsy, After biopsy be stuck at the hospital for 4 hours to be watched, NOT be allowed to drive myself away from the hospital, Make the 4 hour drive home.
The Octreotide scan sounds fun doesn't it? WHAT THE HELL is with the laxatives? As if having cancer isn't bad enough they gotta go and do this to a gal! UGH. Anyway- the Octreotide scan will show any tumors I have, any cancer seeds, and just basically will light up everywhere I have cancer. This scan scares the hell out of me to be honest. I'm afraid there is more there than we've previously thought and a part of me just really doesn't want to know. If I don't update when I get back it's because I'm falling apart to be honest.
The liver biopsy is being done because the nodule they removed from my liver during the surgery was just a bunch of excessive noncancerous tissue (fibrosis) which is actually normal for someone with MEN2a. So now they have to go in and get cells from one of the actual "lesions" to find out what it is exactly in my liver. What a mess.
So I will be gone from Tuesday night until Friday night doing this. Vin said I should just stay down there and he and the kids will come down and we can stay Friday and Saturday and use our Aquarium pass (thank you again to a great mother in law) to go to the Aquarium and hit the beach. I really wish we could afford that. Stars know we could all use the break from all this crap but it's already going to cost at least $300 for me to go down and back for three days. We just don't have the funds for extra days. :( Again, I hate this shit.
Dr. L is also taking me off the Dexamethasone which is the steriod I honestly think is causing all the symptoms I've been having. I am being put on Prednisone which is basically the same thing just a different try to get rid of problems. I have to also stay on the Flurinef as well so I will be on two lifelong steriods and with this new one if I get a cold, feel poorly, or get the flu etc I have to triple my dosage. If I have ANY nausea or vomiting I have to use my emergency injection kit. I don't know if I can inject myself. I really don't. I don't know if I can stick a needle in my leg without passing out. :(
So I start the Prednisone tomorrow and hopefully I will start feeling better. I was given nothing for the pain so I guess I'm just suppose to suffer. Gee thanks appreciate that.
Still trying to get ahold of Dr. R about the kids. If that doesn't come together by the first week of March then I'm going with the surgeon in Tampa. Keep your fingers crossed please.