Skip to main content

Choices

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.

Comments

Popular posts from this blog

Talk About the Sh*t you Don't Want to Talk About

I haven't updated this blog in a very long time.  I actually deleted a ton of posts while I was applying for social security disability. I posted about Cushing's Awareness day earlier this week on facebook, so I guess I'm in a sharing mood. Anyway, for anyone who even reads this, I was watching a documentary on Netflix about a teenager with anorexia and mental illness who found meaning in her life through yoga. (It's called I Am Maris). It's kind of the reason for this post. To start - let's go back to June 2018. My grandmother died.  She lived a wonderful long life, but it was especially hard on me.  She was the reason I got out of bed every day, my best friend, and so much more. I actually don't remember how I got through most of the summer. In the span of two weeks at the end of August, my mom turned 60, we went on a family vacation to the vineyard, my best friend got married, and I wanted to kill myself.  Yeah, you read that right. The day after re

Yet another health update...

As many of you know, things haven't been that great with my health lately.  I just had an appointment with my endocrinologist at MGH that was very informative, although not very exciting.  My ACTH levels have increased dramatically since a few months ago.  This is to be expected after a BLA and since I likely have tumor tissue left in my pituitary gland, this wasn't too surprising.  She seemed a little concerned about this recent increase and took a look at my MRI from July.  I hadn't actually seen the images, I just read the radiologist's report that said everything looked normal considering the 2 surgeries.  She thought my pituitary stalk looked pretty enlarged (the stalk comes up vertically from the gland and connects it to the hypothalamus).  This could be because I have tumor growth, which would make sense because of the increased ACTH.  She is going to have my neurosurgeon look at the MRI to see what he thinks, at the very least this increases my MRI intervals to

The Challenges of Getting a Diagnosis

I have been asked about this so many times, and talk about it a lot, whenever someone asks me about Cushing's.  So many people have the same experience - KNOWING you have Cushing's, and seeing 5, 10, 20, or more doctors over the course of many years before you officially have a diagnosis.  I would say this is one of the most common links I have with other "Cushies".  We all fought for a diagnosis, heard we were just fat and depressed, waited with hope after every test, until a day came when one test came back high, or a brain MRI showed a tumor in the pituitary gland. I think the reason I haven't written about it is because it's one of the hardest things to sit down and spend time on.  It's painful, and of course, I can't help but wonder what my life might be like today if I was diagnosed sooner.  Would I have needed an adrenalectomy?  Or for that matter, a second pituitary surgery? Would I have as many health issues after Cushing's?  It's ha