What a year 2014 was. And what a year 2015 will be. As Cushing's comes, so will it go; although not the way I thought it would when we started on this journey in 2010.
Amongst the bevy of wonderful and joyous things that happened in 2014 (including moving to sunny California!!) were the down times mostly revolving around being sick. After being relatively stable for a good period of time my body decided it wouldn't play anymore. My body chemistry went rogue and it seemed like for the last 6 months every time I turned around I had something else going wrong. We'd get one level back to normal and what we did would throw something else out of whack. And believe me there are a lot of things whose whack can be thrown. I got very sick. I'd have great days where I could do anything I wanted to do, followed by a day or two or five of not being able to get out of bed. I couldn't think straight and became very weak. Those of you who know me know that Carol does not live her life that way.
When I started out on the Cushing's Syndrome journey 5 years ago, it never occurred to me that we wouldn't find the source of it, remove it, and I would get back to my life. As the saga continued, each incident more ridiculous than the last, I was still convinced that while the tumor could outsmart me, it surely couldn't outsmart all of the doctors that were trying to find it. All I had to do was get through the medication that makes me ill, the toxic scans, the body that I couldn't count on, the doctor visits and eventually we'd find the tumor, take it out and bada bing, bada boom we'd be done. I'm not that special! My case couldn't be that rare!
Apparently I am and it is.
I said along the way that I didn't want to give up. I could make it to the end of the journey whatever it was. Although in retrospect the end was always tumor removal and not having my adrenal glands taken out (then the tumor can do whatever it wants but nothing is there to do it's bidding). Removing my adrenals was always a last resort that I never figured I'd have to deal with. Again, my case couldn't be that rare, and besides, I'm not a quitter. I can make it through anything anyone or anything has to throw at me. It may not always be pretty, but I can do it. If I have to take meds that make me sick and push through on days I want to curl up and die, I can do that. I'm better, stronger, faster. What I wasn't asking was "while you can do it, should you do it?". Probably a question that most of us don't ask ourselves enough.
The last 6 months have lit the bulb over my noggin. I'm done. I'm done with the uncertainty. I'm done with the toxicity. I'm done having something dictating how I live my life. I'm done sacrificing my happiness. The journey needs to be over. Of course having your doctors, the brightest minds in the endocrinology world, say that there are no more cards to play gives a little nudge too.
I'm here at the NIH for a month or so, and am going to have one surgery, maybe two. The first surgery is going to be removal of my thymus (not thyroid, thymus) on February 24th. As an adult you don't need it, and most adults don't really have much of one. You may use the google machine to find out what it does, but suffice it to say it's expendable to an adult system. Mine is big. That's odd, but not statistically related to Cushing's. And it has "lit up" on several scans over the years, but again that's not statistically significant. But there have been literally a handful of cases that can be documented where ectopic Cushing's tumors have been located in the thymus. So we're going to give it a whirl and take it out. Maybe I'll be the handful and one. If that doesn't work, and we should know within a week or so after that surgery, I will have my adrenals taken out. While that will come with a lifetime of medication taking and leave me open to several conditions that could, in the wrong context, kill me, it's a lifetime that is totally manageable and much more stable and healthy than the one I'm living now. I don't really feel much emotion about either option. I've been through too much at this point I think. I'm more just bored and impatient than anything else. Let's get this show on the road. And let the singing from the fat lady get louder...
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