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Wednesday, October 15, 2014

Finally Some Bad News!

I'm joking, of course, but that's what I wanted to call this new blog post. It has been a while since I have had anything newsworthy to report. I stopped blogging regularly two years ago when health-related issues settled into a regular rhythm. It felt wrong to post cliffhangers when I knew things would get better. I have had so many ups and downs the past five years I know the parameters by now. Minor issues play out as if from old movie screenplays, the pages all dogeared and frayed. Even awful days are not that bad because I know what to do: bedrest and/or adjust my meds. If I write about the same issues every time, my blog would be both boring and indulgent. I promised at the start to be neither.

However—news!—I experienced a unique, acute event on Sunday afternoon. I should write about it.

Around 2pm I knew something was not right in my body. I was driving home from CVS (where else?) and it felt like a cactus was growing inside me, everywhere, growing thicker and taking over my body, pushing needles out from under my skin. Very odd. I wasn't far from home and I pulled into our driveway safely. MJ happened to be in the garage defrosting the freezer as I stumbled out the vehicle. I didn't want to alarm her, so I said I was fine. The thing is, MJ can see through any type of horseshit, especially when it comes from me. Nurse MJ was on the scent.

Upstairs, we folded laundry without saying much. She watched my body language as I tried to act normal. I hung towels on the line outside, then we sat to watch the Lions play the Vikings. I watched the game. MJ watched the game and me.

The prickly sensation persisted, and I became jittery. My hands shook in such a manner that it was hard to put a water bottle to my lips. I broke into a hot sweat and—moments later—felt an icy freeze run through me. My voice cracked when I spoke. Almost anything I said made me break into tears. No idea why. Somewhere within me a water main was broken and tears just cascaded down my face if I said anything. I wasn't sad or upset, but I was scared. My body was in full flush-out mode; a siphon had started that could not be stopped.

After a while I looked as if I were freezing to death yet I felt only felt mildly cold on the inside, numb. I covered my legs with a throw but immediately felt fire. Hot flash! So I took it off. Freeze flash! This see-sawing of my body temperature played out several times. The last time I felt this way was five years ago, after the surgeries. The swings were far worse back then, but this was similar.

I watched more of the Lions. MJ watched me.

After the first missed field goal attempt I paused the game and admitted, "I feel horrible. Something is wrong."

She rubbed my shoulder and said, "I know you miss Jason Hanson."

A joke, of course. In fact, she was seriously concerned.

"Do you need to go to the doctor?" she asked.


"Then let me get you something."

I have discovered a talent for getting myself out of holes, using simple intuition: eyes closed, think of food or beverage. The first thing in my head is what my body needs.


I don't know how, but it helped. I can't remember a nut craving before. We had some shelled walnuts in the freezer, and MJ also brought me a plate of dried apricots, a source of potassium. I unpaused the game. As I ate handfuls of nuts and apricots my hand shakes were so bad I couldn't aim at my mouth correctly. Nuts fell to the floor. They felt good in my stomach, but I continued to cry for no apparent reason.

Also of note is how other foods repulsed me. Foods I wouldn't touch were a protein shake, a banana, beef jerky, toast, an omelet, or anything with refined sugar. I was just nuts for nuts and a wave of warmth passed through me. My yoyo system stabilized for a while, and I put my feet up to finish the game.

Gradually, I worsened again, this time with nausea. My hot flash / cold flash cycle restarted—worse than before—and now I made regular trips to the restroom, signaling the onset of the daily "breakthrough" urination related to my diabetes insipidus. During one of those trips I caught a glimpse of myself in the mirror. I took a close look at my face and thought, "Man, you look awful."

My skin was pasty and gray, my pupils were dilated, stuck in a too-open position that didn't look right. As I sat back down and talked (cried) this over with MJ, I noticed all the strange symptoms again: the cactus pushing under my skin, the temperature swings, the nausea, the anemia. I thought through an emergency room visit on a Sunday night. I didn't want to go. No energy. I wanted to go to bed. It was 5pm.

Nurse MJ was visibly scared at my growing indifference. She pressed me on whether it would be wise to go to the ER. In retrospect, my lack of concern for seeing a doctor was pure exhaustion. It sounded like a hassle and I wanted to lie down. I don't think there is much an ER could have done anyway besides keep me there for observation, run blood tests and take notes until I felt better. Maybe they would have started an I.V.. Maybe I was dehydrated.


Backing up a bit, the past week I had been fighting a chest cold and running a fever. I was playing rehearsals and concerts, but I was spending the days in bed. Sunday morning, the fever broke and I made a hot foot bath. Then I took a long steam, trying to sweat out as much as I could stand, flushing all the toxins and yucky stuff from a week of illness. I had a bottle of water, but I only sipped it. Keep in mind that my omnipresent diabetes insipidus keeps me thirsty much of the time and have learned to resist gorging on liquids. So, fluid regulation is tricky. I probably threw a lot of things out of balance by purging so much fluid without replacing it.

My other side condition—panhypopituitarism—could have played a role too. "Panhypopit" is treated by replacing most of the body's natural hormone production artificially using sprays, pills and gels. Most people have glands that produce healthy hormones and—most importantly—respond to stressful situations by producing more of what is needed, on an as-needed basis. My body can't do this. If I am sick, I need to manually simulate what a normal gland will do and take more of one hormone to avoid getting even sicker. Actually, my glands would work fine if they could be told what to do. With panhypopit, the pituitary gland (which was right next to my excised brain tumor) stops doing its job. The pituitary is supposed to tell other glands what to produce. It's the CEO of HormoneCorp, and mine just sits there like a dead tadpole.

As a result, the other half of my theory about Sunday's acute event relates to hormones. As the hot-cold flashes persisted all night, I wondered if my too-aggresive approach to "spa day" did more than dehydrate me. I wonder if I somehow purged testosterone stored in my fat (absorbed via a gel smeared on the skin). Five years ago, my hot-cold flashes were at their most intense when I had zero testosterone, before my life of replacement therapy began.

And with cortisol, the steroid hormone, I have read enough accounts of adrenal crises in my craniopharyngioma support group to at least consider this too. I didn't experience a full, life-threatening adrenal crisis because I didn't have enough of the real symptoms like vomiting, high fever, disorientation, etc.. However, I did feel much better Sunday night after I swallowed an extra 10mg of hydrocortisone, something I am supposed to do when I am sick. Hydrocortisone (in larger doses) is the first thing used to treat an acute adrenal crisis.

It was an ordeal that remains a mystery, one worth writing down. It was seriously intense for a few hours, and it scared both of us. The symptoms have since faded. If Sunday was a 9 on a scale of 1 to 10, Monday was 4, and Tuesday was 1. Today it's a 3 again and I'm back in bed this morning. I just need to rest.

The Lions won, by the way. Sunday was a good day.