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 […]

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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 […]

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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 […]

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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 […]

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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, […]

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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, […]

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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 […]

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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 […]

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