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Remission? Not so much...

So I had my first post-op appointment today with my Neuroendocrinologist. I went in expecting bad news - I've had a bad feeling that something isn't right the last few days. I had a dream last week that the pathology of the tumor came back negative, meaning they didn't take the tumor out. I brushed it off, because I tend to think worst case scenario, but it turns out I was onto something.

My endocrinologist said that the neurosurgeon was very pessimistic about the first surgery being a cure. He had trouble seeing a defined tumor in the gland, and he took out a piece of questionable tissue that turned out to be nothing significant, so that means the tumor is still there. The weight loss after surgery was probably due to disturbing the tumor enough so that it shut off, but now the tumor is recovering from the trauma of surgery and is working again. My legs are swollen, my face is puffy, and I've put back on 7 of the 11 lbs I had lost. My blood pressure was high and my face is red again - all signs point to Cushing's.

I am not surprised by this news at all - I knew that the process from testing to surgery seemed too easy. The next step is to do some more cortisol tests to make sure the numbers are still high (which they probably are, I had 2 high numbers and one normal since surgery), then go back in to remove the whole right side of my pituitary gland. They want to remove the entire half that showed hypercortisolism because they cannot find the defined tumor they saw on the MRI. I might need artificial hormones for a period of time, but my body should recover and the left side of my pituitary gland will eventually learn to take over.

The good news is I WILL be cured. It is just a matter of time. If the surgery to remove half of the gland doesn't work, we can try radiation, and if that doesn't work, they can remove my adrenal glands so my body has no way of producing cortisol at all.

I will have more news and a possible surgery date next Monday after meeting with the surgeon again.

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