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Category Archives: Housekeeping
The Meaning of Hope
Hope. I banished the word from my lexicon more than two decades ago. With an illness as long and as intractable as the one I have endured, it was just too painful and dangerous for me to throw my faith behind any one person or any new therapy. Much better to stay grounded, to live [...]
Also posted in Life, Pity Party, Wall-E—The Neuroendocrine Tumor
7 Comments
Mayday, May Day
If you suffer, you know the adage well. The best thing about a migraine is that it won’t kill you. Of course, the worst thing about a migraine is that it won’t kill you. If you’ve never lived through one, you can’t really know. Honestly. I can tell you about accidents that left me with [...]
Also posted in Family, Life, Wall-E—The Neuroendocrine Tumor
3 Comments
Anticlimatic
Okay, people, move along. You sir, nothing to see here. That’s right, keep moving. So, today was injection day, the first real day of my experimental drug trial. I was put through the usual battery of tests, a dozen vials of blood were drawn, and then they shot me full of a thick, viscous liquid [...]
Also posted in Life, Wall-E—The Neuroendocrine Tumor
4 Comments
Testing One… Two… Three
It’s been one hell of a fortnight. When we closed the last chapter on our continuing saga, I had just offered my body to science as part of an experimental drug trial to fight the rare neuro-endocrine tumor that’s taken up permanent residence in my skull. I’ve been totally miserable since. You know how Rocky [...]
Also posted in Family, Life, Wall-E—The Neuroendocrine Tumor
Tagged Wall-E The Neuro-Endocrine Tumor
12 Comments
Overture, Curtains, Lights!
So, it’s show time. I spent the morning at the hospital ensuring that my informed consent is truly informed, and then I signed on the dotted line. If I pass the screening test in two weeks — and, just so you know, I’m really good at tests — I’ll officially participate in “an open label, [...]
Also posted in Family, Life
10 Comments
Hiccups
And then the other shoe dropped. Okey dokey, so I received an updated clinical trial consent form, and I don’t have to very read far before I notice a big difference in how I’ll be handled during this experimental treatment to control a rare neuro-endocrine tumor. ECG tests have been added to every hospital appointment, [...]
Also posted in Life
7 Comments
Baby Steps
Finally, the ball is rolling, and I’m grateful. I’ve had eight migraines over the last nine days, and that kind of unrelenting pain makes me a little, well, bat-shit crazy. No one can say for sure that my rare neuro-endocrine tumor is causing the migraines. It’s just a feeling I have, based on the pattern [...]
Also posted in Life
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The Problem is All Inside Your Head She Said to Me
We’ve moved into Hurry-Up-and-Wait, Phase II. My earlier facts were correct, but my appointment with my endocrinologist today filled in some vital details. My pituitary tumor, which sits in the hollow of my brain, has grown dramatically. It is starting to move into my sinus cavity, and it is a concern. But it continues to [...]
Also posted in Life
3 Comments