• Emily

where do the busted angels go?

I had plans. Great plans! The first plan I had was to write up a lengthy list of thank yous to the many people who have shown me love since the diagnosis. There are so many of you, you all have been so incredibly kind, and I want to thank you all at some point. I apologize for being perpetually late in that regard. But unfortunately, I am dealing with a lot of shit.

The next plan I had was to write an honest post about how I had a very personally difficult New Year's Eve. My brain was not in the right place at all and I finally stopped crying four minutes before 2022 began. But this post will have to wait as well.

Because guess what! I got myself a ✨NEW DIAGNOSIS ✨!

*(still have cancer too of course)

Before anybody gets too excited let me announce that, like cancer, it is incurable. Like cancer, there are treatments that can allow me to live a long and regular life. Unlike cancer, however, I will never go "no evidence of disease" or enter any sort of remission.

Here's the long and the short (but mostly long) of it, and buckle in because it's a lot of fascinating stuff that most people likely don't know!

The pituitary gland is a little gland that chills near the brain and sends signals by way of a hormone (ACTH, or adrenocorticotropin) to your adrenal glands to produce hormones that help your body to handle stress, regulate your blood pressure, and a bunch of other important things. Adrenal insufficiency (AI) is where the adrenal glands no longer produce the cortisol (and other hormones) needed to help the body deal with any stress that heads its way (plus other things).

This can happen when the pituitary gland stops working properly and it can't send the message to the adrenal glands to tell them to do their job. This is called Secondary Adrenal Insufficiency. This can also be when the pituitary gland is just fine, thank you very much, but the adrenal glands just don't release their hormones anymore. This is called Primary Adrenal Insufficiency. I have the latter.

Fun side note, they learn this by giving you a blood test at 8 am, then injecting a drug into you that stimulates your pituitary gland, then they test your blood at 8:30 and again at 9:00 am. If the cortisol in your blood has risen to a certain amount by that time, you're good or your adrenal glands are at least functioning. If your ACTH has risen by that time but your cortisol has not, you have Secondary AI. But if your cortisol is zero amount for all three blood tests, you have Primary AI, like me.

What does this mean for me? Well, this is a life-changing disease. The biggest and most obvious change is that I will now be taking hydrocortisone and fludrocortisone (both steroids) every day for the rest of my life. I will have to double my dose of hydrocortisone whenever I am sick, for three days. And if, after that I am either still sick or worse, I have to call my endocrinologist to ask if I should keep taking double, or if I need to see the doctor or go to the hospital.

The other big change is that I have to wear a medical alert bracelet. This is because without the hormone to help your body handle stress, well, stress on your body can be Very Bad. How bad? The example that makes most sense is this hypothetical: if I was in a car accident alone and was unconscious but needed emergency surgery, that woud be Bad. My body would not be equipped to handle it! This kind of body stress to an AI person can lead to coma or even death. So I will wear the bracelet forever (as soon as it arrives, it is currently being engraved and I expect it around January 19).

Like most things, this diagnosis was scary to hear in the moment. What do you mean we have to have a bottle of liquid steroid and syringe and needles and give me an at-home shot if I am unconscious or can't keep my pills down?!? But I am hoping that with conscious pill management and honesty about how I'm feeling and admitting when I'm sick will help me live my regular life.

Before you ask, yes, it is most likely that my immunotherapy is what caused my adrenal glands to just up and quit. Remember a long time ago when I said immunotherapy can cause diabetes and other auto-immune diseases? Well, this is an auto-immune disease that USUALLY happens with a regular immune system going off the rails. But mine is the result of immunotherapy being a bad influence on my immune system.

Having now experienced my second (and hopefully last) completely out-of-left-field, what-the-hell, where-did-this-come-from diagnosis in less than six months, I'll admit that mostly I'm still in pretty good spirits. I'll save my emotional ramblings for another day.

But I WILL say that this actually answers more questions than any other thing we've learned so far. AI is what put me in the hospital in November, it's what made me go back. AI is what kept me in bed for four days after the booster shot. AI is why I've had trouble kicking anything since I started treatment. Maybe, just maybe now that I have the right diagnosis and the right treatment, my original crazy disease could get on a less painful track?

Here's hoping anyway!

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