This isn't fair has been the theme of the week. I had a high 24hr urine, which is great because I still feel like I have Cushing's, but it also sucks, because it means I still have Cushing's. I thought by now I would be done with everything, but instead we are starting all over again. The past week has been interesting. My body has rejected a semi-normal sleeping pattern in favor of staying up until 6 or 7 in the morning and sleeping all day. I've been trying not to make the cycle worse by making myself get up at 11 or 12, but I definitely need more sleep than that! I've been exhausted but unable to sleep.
So because I still have Cushing's, I have some options. I'm not really a huge fan of any of them though.
1. Radiation. I could elect to have radiation to try and "kill" the tumor. This risks damaging the normal pituitary gland and could take up to a year to work, if it works at all. I can't wait a whole year for something to work, I'm not that patient. I need to be done with this now, so here are two options that would most likely make that happen.
2. Bilateral Adrenalectomy. This would be a surgery to remove both of my adrenal glands, which sit on top of my kidneys. A guaranteed cure because your adrenal glands are responsible for cortisol production. Take them away and you have no more cortisol. This would be trading Cushing's Disease, excess cortisol, with Addison's Disease, cortisol insufficiency. It would leave the tumor on my pituitary gland, which could grow over time and need to be treated anyway. Adrenal insufficiency means daily hormone replacement for the rest of my life. My surgeon and endocrinologist said that this option is usually the last resort for someone like me, since they know I have a pituitary adenoma that is causing my symptoms. I agree with them.
3. Removal of the right half of my pituitary gland. This would remove the tumor, which would cure me of Cushing's. It would also leave me with only half of a pituitary gland. Theoretically, the half that's left should learn to compensate for the missing half, but that can take time and is not always guaranteed. Having this procedure would be signing up for a hormone balancing act (including decreased fertility - basically no babies without help). My doctors advised this route. I agreed. I'm not super thrilled with it, but it seems like the best choice.
I was fine with that until recently. I have said in the past I would do ANYTHING to not have Cushing's anymore. If anything meant no babies, fine. I can adopt, medical technology will be more advanced by the time I want them, and there's always a chance they'll do less damage than they think they will. This week I'm in a "this isn't fair" mood. It's not fair that my only choices are to trade Cushing's with something else. I know it could be a lot worse, and I AM excited to be done with Cushing's finally, but it still sucks.
So because I still have Cushing's, I have some options. I'm not really a huge fan of any of them though.
1. Radiation. I could elect to have radiation to try and "kill" the tumor. This risks damaging the normal pituitary gland and could take up to a year to work, if it works at all. I can't wait a whole year for something to work, I'm not that patient. I need to be done with this now, so here are two options that would most likely make that happen.
2. Bilateral Adrenalectomy. This would be a surgery to remove both of my adrenal glands, which sit on top of my kidneys. A guaranteed cure because your adrenal glands are responsible for cortisol production. Take them away and you have no more cortisol. This would be trading Cushing's Disease, excess cortisol, with Addison's Disease, cortisol insufficiency. It would leave the tumor on my pituitary gland, which could grow over time and need to be treated anyway. Adrenal insufficiency means daily hormone replacement for the rest of my life. My surgeon and endocrinologist said that this option is usually the last resort for someone like me, since they know I have a pituitary adenoma that is causing my symptoms. I agree with them.
3. Removal of the right half of my pituitary gland. This would remove the tumor, which would cure me of Cushing's. It would also leave me with only half of a pituitary gland. Theoretically, the half that's left should learn to compensate for the missing half, but that can take time and is not always guaranteed. Having this procedure would be signing up for a hormone balancing act (including decreased fertility - basically no babies without help). My doctors advised this route. I agreed. I'm not super thrilled with it, but it seems like the best choice.
I was fine with that until recently. I have said in the past I would do ANYTHING to not have Cushing's anymore. If anything meant no babies, fine. I can adopt, medical technology will be more advanced by the time I want them, and there's always a chance they'll do less damage than they think they will. This week I'm in a "this isn't fair" mood. It's not fair that my only choices are to trade Cushing's with something else. I know it could be a lot worse, and I AM excited to be done with Cushing's finally, but it still sucks.
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