You may have noticed that I haven't been my usual prolific self in the past month or so with regards to postings here. I'm sure you have missed my musings on life in general that were usually scattered amidst the medical mystery details that have become the fabric of my life. But lately I have lost my edge. My creativity has waned. My humor relatively non-humorous. As I see this happening, I ask myself "why?". I don't remember finding myself in this frame of mind during the last year and a half or so. What's going on? I'm starting to realize that the key is the time frame. A year and a half is a long time. A really long time. And I think it's starting to get to me.
I've heard people say that the most difficult thing about getting older is letting go of the expectation of what you thought your life was going to be and being satisfied with and finding joy in what your life actually is. This can be easy (at 46 I'll probably never play professional beach volleyball), or difficult (I thought I'd always be relatively low maintenance...in the medical sense anyway...). It never occurred to me that my life would revolve around blood tests, alarms going off reminding me to take pills, peeing in a jug, and hoping that federal funding to the NIH doesn't get cut. In the beginning of this Cushing's saga, I could convince myself that this was just a blip on the personal health meter. That it wasn't a permanent thing and that I was just paying my dues for all the years that I went medical malady free. It is becoming more difficult to maintain that optimism. That belief that this will all be over and my life will return to normal. That normal that I knew. That blissfully confident way that my body did what I wanted it to do not what it wanted to do. I'm starting to mourn for the fact that that ship has sailed.
As near as we can figure, there are going to be two ways out of my Cushing's situation. Best case is that my gaggle at the NIH finds the tumor that has taken over my endocrine system and nukes the bastard. I'm due to be re-scanned stem to stern in November, and every finger and toe is crossed that this time is the pay dirt hitting scan-o-rama. But what if it doesn't happen? What if the tumor eludes us yet again? Yes, we could continue on the way we are, life revolving around medications and doctors, for another 6 months until I can be scanned again hoping that that time will be the magic discovery, but do we want to? That question leads to the only other way out of this mess that is blowing to crap my expectation of the rest of my life.
If I have my adrenal glands removed, my Cushing's problem would be solved. It would be solved tomorrow if that's what I wanted to do. Without adrenals, no cortisol is produced (among other things) and no matter what the tumor in my body is doing, it won't make a difference. There won't be anything there to listen and do it's bidding. But, as with everything, there is a catch. I would have to take medication to replace everything that is no longer produced by the absent adrenals. That makes me an instant chronic, pre-existing condition and someone who is no longer "healthy". My life isn't supposed to turn out like that. Like any of this.
So there's the choice. Do I continue on trying to live with Cushing's hoping that eventually my tumor is found meanwhile enduring toxic drugs, radioactive scans, bothersome chemical swings in my system, alarms, doctor visits and a life that revolves around Cushing's rather than the joy of living? Or do I cut my losses and admit defeat. I can't win this battle the way I want so I'm going to take charge and end it the way I can. On my terms. And how do I not think of that as a defeat. As giving in. As losing a fight I wasn't strong enough to continue to fight. There my friends lies the core of why my prose has dried up and where my mind has gone.
I'm sure my humor and observation skills of the world around me will return. Soon. They never stay away for long. Life is just too ironic for me to let pass by without comment. But let it be known that I am trying to reconcile this batch of poopy and re-adjust my views on my own life and future. We all do it. I'm just being forced to do it a little sooner and differently than I expected.
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