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Wednesday, March 10, 2010

Diabetes Insipidus

The next big date for me is March 15 when I meet with my neurosurgeon to go over my MRI and discuss strategy. I haven't seen him yet because 1) there is probably nothing to do at this juncture and 2) we are waiting for Tumor Board so everyone can disagree about my case again.

In the meantime, I have settled into a routine with the new medications and hormones. There is something artificial about all of it, though. I have dreams that I am dead but — like in H.P. Lovecraft's "Reanimator" — I take a serum to animate my body and pretend to be living. It sounds creepy, but it's my way of coming to terms with the new relationship between my brain and the rest of me. There is a "delay" now where things don't work seamlessly. But I am getting used to it.

Also, in a few weeks I will meet with the endocrinologist to measure hormone levels and discuss strategy. I have a feeling something will need to be done about adjusting for "stress level" hormones before performing. So far I have not been able to play full-length classical concerts. Something in me gives out. It's not the same as exhaustion or over-stress. Rather, I have used up everything and have no choice but to lie down with ice. I’m spent like a wind-up toy that won’t move anymore. This is where endocrinology gets tricky, but I have hope we can tinker with my case so I can feel normal on stage for a whole Brahms symphony. After that, I’ll find a way to do Bruckner.

My diabetes insipidus is the most prominent of my new conditions and also the most entertaining. Previously, I lived with a mild version of it and did not even know. I found out when I was in the surgeon's office before the second surgery.

He said, "People with pituitary area tumors often have diabetes insipidus. Do you?"

"I don't have diabetes," I said.

"No," the surgeon said. "Diabetes insipidus is different. For example, do wake up a lot during the night to use the bathroom?"

"Not really," I replied. "Five or six times, but no more than that."

Not only did I find out this is not normal, but after the tumor's removal my case went from mild to severe. Before, I was popping in and out of restrooms every hour, but now (untreated) I need to drink twenty-four liters of water every day just to keep ahead of the fluid loss. My condition is so severe I must constantly be near a water source or my mouth will become dry and caked within ten minutes. It can be frightening.

Yet I see the good in everything, and there is good in this too. As all my friends know, my main hobby is gastronomy. I will cross continents to seek out unusual delights. On my honeymoon I drove a very patient Mary Jane 280 kilometers one afternoon just to taste a famous liver fried with rosemary. At home, I hunt morels endlessly in the spring. I love wine. I eat live fish at Japanese restaurants. My favorite meat is squab. I love gastronomy and I am always seeking the ultimate experience.

And through my diabetes insipidus I have found it. It has been in front of me the whole time. Simple, plentiful, and free. Here it is:

Extreme thirst + massive amounts of freezing water = the ultimate bliss.

The greatest gustatory sensation I have ever experienced was in the hospital when I would wake up with a mouth so dry I could not speak. I would call for a nurse and she would bring a large Styrofoam cup filled with ice and water so cold it could have come straight from a polar floe. I would latch onto the straw and inhale an enormous quantity of water before gasping for air and then drinking again as quickly as I could. The faster the intake equaled the greater the relief, and the return was exponential.

It. Was. So. Satisfying.

Now that my condition is treated with a nasal spray once a day, I miss that extreme thirst and extreme blast of ice water. But I do get a little taste of it as I wait through daily “breakthrough urination.” I have an hour every afternoon with sudden fluid loss and I eat a grapefruit and sip sparkling water to balance things before I hit the nasal spray. It’s a moment of imbalance, but nothing close to the immense satisfaction I felt in the hospital.

I used to wonder if (as a wine lover) I would ever have the occasion to drink something like the 1947 Cheval-Blanc or the 1945 Mouton. Probably not, I would guess, but at least now I have tasted something just as good.

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