More of the Same

I was hoping, but not counting on, some new news today. But nothing really new. Dr. Ley wanted to see how I felt, that's pretty much it. I thought he was going to be talking to the doctors at Duke, but he was just watching my progress since I'm not stable. I was thinking that that would be an excellent reason to talk to Duke, but I guess NOT. Grumble.

Because the cortisol test seemed to help so much, he had me on 7.5 mg of prednisone a day. He backed me off to 5 several weeks ago. I really started feeling more tired and backsliding with other symptoms starting the middle of last week. So he is thinking the prednisone isn't helping and wants me to wean down to 2.5 mg starting tomorrow, and 0 in a week. Any bets that I'll feel like the compost pile by this time next week? My bet is that the lowered prednisone caught up with me and that's why I'm feeling worse. But since he is tinkering, he wants me to keep him updated when I feel a change. My bet is that I'll call Thursday night or Friday morning, but only God knows right now.

I will say that I'm impressed that he has called to and talked each of my other docs, including my cardiologist. I had 3 very different heart function results and he wanted clarification. I REALLY appreciate that he is taking the time to go over every detail and note and is talking to the other specialists to truly find what is going on. It gives me faith that he is the right person, not just the right doctor, but the right person to entrust him with my health right now.

On another note, he does want to revisit taking out either my thyroid nodule or the entire thyroid at my next visit in three weeks. While the bibopsy didn't show the worst cancer, it did show suspect material and he said the vascular nature of it and the calcification in it was troublesome and we shouldn't wait much longer to make a decision on what to do. I was like 'take it NOW'. He stressed he sees it as a separate issue and wants to wait three weeks and I said 'I don't CARE'. I think I entertain him...and we will discuss further in three weeks.

I still say that part of my crap sandwich feeling is from my thyroid. Don't ask me how I know, I've just felt it for years that something was off and that it involves my thyroid. Now that there is the majority liklihood that it will be cancerous at some point, I'm just not in the mood to sit and whittle away and twiddle my thumbs. I'm action oriented and sitting and discussing isn't something I need to do anymore...I'm ready. I weighed all the facts as I acquired them and did so much research that as I received more facts, I knew where to sort them into my brain. The fact that my doc is very highly regarded and says that the nodule is cause for concern, when my research shows the vascularization and calcification and calcitonin levels back that up, well, I'm ready. Pop the mask on my face and lets roll with it. I guess I have such a health history of getting the unlikely news, of being the 1 in 100, and that sort of thing makes me more inclined to just deal with something now instead of sitting and waiting.

There was an additional blood letting at the end of the visit, but I didn't really cringe. Guess it's been long enough my veins and arms didn't automatically hide. He is retesting the calcitonin, aldolase, cpk, and running the standard metabolic panel. He checking to see if the calcitonin is still above normal or is going up or staying the same. He is running the aldolase because it was normal at the hospital and elevated several weeks later. He is running the cpk to make sure if the aldolase is elevated that it isn't my heart, and the panel because my potassium has been going up and down and around and around. Fingers crossed that all will be normal.

Fingers crossed and prayers that the prednisone reduction doesn't cause me to because really weak or that if it does that it provides the doc with some answers. And fingers crossed that the Duke doc can help provide clarity.