I thought that it couldn't get any weirder. Those of you who have followed my Cushing's saga for a while are well aware of the twists and turns that it has taken. Some have been more ridiculous than others, but I don't think 6 months have gone by in the last 5 years where I haven't been surprised by some Cushing's related thing that makes not only me, but my doctors as well, scratch their heads. As we wind this medical adventure down, my body couldn't resist getting in one more lick just to remind us all exactly who is and isn't in charge. In my opinion the best and most absurd has just happened.
To review, I was scheduled to have my thymus removed on Tuesday 2/24. If my thymus wasn't the cause of my Cushing's, we'd know a few days after surgery if my cortisol level went back up to Cushing's levels. If this happens, then I'm scheduled for an adrenalectomy on 3/9. The adrenalectomy solves the Cushing's problem by removing the gland that produces cortisol. No gland, no cortisol. Done. Yes I have to take medication for the rest of my life, and it becomes a very serious situation if I get injured or have a surgery and extra synthetic cortisol is not administered. I could die. But other than that it's very manageable. If the thymus is the cause of my Cushing's, I go home happy as a clam and resume my life medication free. I'd rather continue to have my adrenal glands, but both options are better than where I've been for the last 5 years.
Imagine my surprise last night when my doctors arrived in my room to (reluctantly) inform me that the thymus surgery scheduled for Tuesday had been cancelled. Huh? My team knows how much I was counting on this happening. They know how close to the end of my rope I am and have promised that when I leave to go back home I will be Cushing's free - one way or another. How can they be standing there telling me this? If the surgeon has, yet again, decided to cancel me for his own reasons, I cannot be held responsible for my actions...or the verbal barrage that will be aimed directly at his, and his entire family's, disposition and reputation. There will not be an ego that is left un-pilloried when I am finished. Mark my words! But I suppose I should listen to what the doctors are saying is the cause of the cancellation before I begin my rant...
It seems that my thymus, since I was here in February 2014, has disappeared. It was there - I saw the scans. And now it is not. I saw those scans too. It's been there, oversized and an oddity, since my first scan here 5 years ago. But at some point over the last year it decided to go away. This was not something that was anticipated by my team, nor was it anything that they could explain by more than a shaky hypothesis not supported by any statistically significant data. It is true that when you have Cushing's the thymus enlarges. But if it is controlled, either by medication or by surgery, the thymus will return to normal size. For a person my age, normal is non-existent. But I have been reasonably well controlled for 4 years now. Yes there have been unstable periods along the way, but not for long periods of time and not with cortisol levels that were near to where I was before being treated with the medication the NIH provides to me. The general consensus has always been that if my thymus was going to shrink it would have done so long before now. A mark on the side of the tumor being in the thymus. Imagine the surprise when the doctors went to look for my thymus and it wasn't where they left it!
The thymus removal surgery was cancelled because there is no longer a thymus to remove. Seeing that absurdity now???
Luckily the surgical team who will perform the removal of my adrenal glands were able to move my surgery up to next Wednesday 2/25. So while it's not my option of first choice, I will still walk out of here with no Cushing's Syndrome and that's a good thing. 5 years ago I couldn't imagine accepting the loss of my adrenal glands. I never expected that this is how things would end. It seemed like too big a thing living without a pretty important gland that produces chemicals that basically keep you alive and being dependent on daily medication to stay upright and out of the hospital and/or morgue. But if I've learned nothing else from this experience, quality of life is the most important thing. That becomes really clear when you don't have it. And I want mine back. At this point, the price is my adrenal glands. And that's a price I'm willing and eager to pay.
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