Archive for September, 2010

Relatively Up-to-speed

As is obvious to anyone that still even checks this blog, I’ve gotten pretty lax on keeping it up to speed. More than anything that is just a reflection of my mindset these days. Every day I am reminded in many ways to the fact that I have this weird cancer, but at the same time it seems to be losing it’s mental grip on me in small degrees. I am still very realistic about the disease and my ultimate chances, I just don’t feel like its going to happen a week from Thursday anymore. As I’ve said many times: I’m all for positive thinking just as long as that isn’t really a buzzword for denial.

In August, I took a couple of trips down to Mayo to see if they could get at the cause of the head issues that have been my enemy all these months. I went to see a neurologist and also have an MRI of my cranium. Both of these turned up nothing out of the ordinary. I was not surprised at this outcome at all as I have been convinced all along that these symptoms were tumor/adrenaline related and not something else.

So now I have the situation where my super rare disease has even super rarererer symptoms that haven’t presented themselves in Mayo patients before. Different medications are being tried, doses are being tweaked, and patience is being tried daily. Those of you that follow me on Facebook have probably noticed that I’ve been up and around some. The meds have definitely allowed me to be vertical more than in the past, but the fatigue is really tiring me out, so to speak. I can and will go to functions quite happily, but my energy is expended getting to and fro with a lot of sitting around once I get there. For every day such as my State Fair outing, there are 3 more days of laying about waiting for the new med regime to kick in.

So that’s where I’m at: Static tumors, weird symptoms, and heavily medicated.

All further treatment such as surgery, chemo or radiation is on hold until the tumors start growing again. That could be sooner, it could be later. I’ll be checked again in January. I continue to keep a close watch on my adrenaline production, heart rate, and blood pressure.

I know this post is a bit dry, but I gotta say: I’m tired of this shit. All signs point to this getting a lot worse in the future, but even at this point, this is all just a daily drag. Everyone that sees me on a regular basis will say that my mood is good – and it is – but some days I just want to take a brisk walk, go to a job, have a clear head, not think about pheos.


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