I am a terrible procrastinator. Anyone who knows me would agree with this. I am a Pisces, I have huge ideas, and a room full of projects that were started and never finished. I am terrible about sitting down and writing, but I really want to make an effort with this blog. Even if only one or two people read my posts and are more informed about Cushing's then I consider that a success.
I have felt for quite sometime that I have had a recurrence of Cushing's but I was told by my doctor that it was just taking my body longer than normal to recover from my Pituitary surgery. I even read a chart note that said "patient is unhappy with her life and is just looking for something to explain her problems." That really hurt, as I actually respected this doctor. So after that experience I resumed working with the specialist that diagnosed me in California.
I have been doing scores of 24 hour urine collections, salivas, and midnight blood draws. My fridge has been full of orange jugs of pee and my freezer stuffed with vials of spit. My family loves it! It has finally paid off. Two weeks ago I had a phone appointment with my doctor and after evaluating my labwork he agrees that I am having a recurrence. I had hoped he would say let's move on to a BLA (bi-lateral adrenalectomy), where they remove your adrenal glands and you essentially trade Cushing's for Addison's. But unfortunately he felt I am "early" in a recurrence and he wants to try a medical approach first.
I have been wary of trying a medical approach (it doesn't always go so well for people with Cyclical Cushing's). One of the local doctors in Arizona wanted to try a medical approach before my pit surgery but I would rather take the surgical option which has a chance of cure or remission than just suppressing the effects of cortisol with medication. But now I am at a place in my journey where I don't really have a choice. I take the medication and hope for the best or watch and wait as the Cushing's symptoms all return and get worse.
Luckily I belong to a wonderful support group of amazing people who gave me lots of great suggestions for starting this medication, Ketokonazole. And I am also surrounded by a wonderful faith community who is lifting me up in prayer. So far (3 days into it) I have only experienced some mild nausea and fatigue, and a slight increase in my chronic pain. I am expecting it to get worse as this week I only started out at half the prescribed dose, so ask me next week how I am doing.
So what is the plan? I am going to take the Keto, keep putting one foot in front of the other, and hope that either my neurosurgeon sees a surgical target (new tumor growth) on my most recent MRI, or that my Endo decides my case finally meets the criteria for a BLA. I just pray for the faith, strength, and trust in God to just walk my path with an attitude of gratitude each and every day.
