Monday, July 2, 2012

I Hate You, Cushing's Disease

Hi everyone. Sorry for such a long absence. In this past, I take time off from writing when I myself am too sick to talk about Cushing's.  When I am exhausted all the days, riddled with headaches, body aches, dizziness, and muscle spasms, I don't feel like the best public speaker for Cushing's. Nor do I have the energy to queue up posts to show up in my absence. Nope. I was too sick for all that.

This absence, like other times, is caused by my own testing, diagnosis, and clearance for third pituitary surgery. That's right. You read that right.

I still have Cushing's disease. 

I still have high cortisol at diagnostic levels on four different diagnostic tests. 

I have a third tumor showing on my pituitary that did not show itself last year at surgery.

I am still fighting Cushing's.  

I hate Cushing's.

When will it ever end?!

High cortisol and high ACTH.

Things get really complicated when you are this far into a Cushing's diagnosis. The likelihood of a positive outcome decreases with each stage of treatment. There aren't a lot of people in this world "like you," and even fewer that you may have access to. Nope, for sure, these tiny details make the next decision even more difficult on the patient.

And frankly, when can I cry UNCLE?
When can I say that I've had enough of this beast called Cushing's?
When will this be over?!

I am considering next steps for treatment:  third pituitary surgery vs. bilateral adrenalectomy with risk of developing Nelson's syndrome from an untreated pituitary tumor vs. medical therapy such as Korlym.   Each has its risks and benefits.  Which risk is greatest? Which benefit is greatest? Well, it seems everyone has a different opinion on that.

I fear that the effort to make this decision will exceed the energy I have in a day.  I spent the first 72 hours after learning of the presence of a third pituitary tumor in a tailspin. First, notify the family. Second, notify my Cushies, my besties. Third, reach out to neurosurgeons for second, third, and fourth opinions.  Fourth, reach out to Cushies who have been *here,* who have made this decision, and see if they can tell me something I don't know, something I've forgotten, something I just can't know until I've lived it. Fifth, look around the rest of my life, and do some things that need completing. Things that are super important to me, like completing the redecorating of my preschooler's room. Watch out world, a Cushie's got things to do!

My main concern now is wondering how I will make the right decision. How will I know what to do? Somehow the right path for me will present itself. Right? 

I am keeping my eyes open for all the signs, asking for help from everyone I can, including friends I rely on and can trust. 

I participate in my own healthcare. I am an advocate because this is my life, my body. No one knows it better than me, and I know me best. I've never left me behind.  I've never failed to show up.  I haven't missed any important events.  I have, however, been too busy to listen to myself.  I have placed other opinions before my own.  I have muted my instincts to appease someone else.  

In this situation, after all that has happened to me, after all I have faced, I just can't let that happen. I will know the right answer when it feels right *to me.*   So, isn't that my answer?   If I can keep my aim right there, right in that small spot of people to please, I hope to hit the bulls eye. As long as I can live with my decision, I'll know I made the right one.  When that happens or what it will be, I do not know. Stay tuned as I share information I'm sorting through as I make my decision.