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Tuesday, January 3, 2012

In Sickness and ...

Oh my God. I am enduring one of those horrible nights again. Writing at 3:52am is my last resort because I can't do anything else. I can't lie down and stay still. I have no energy to wake up. My body is chilled and sweating at the same time. The light of my laptop soothes me.

I made a pot of green tea at 3:52am because it sounded good. Hot liquid going down my throat feels nice. I don't know why I want green tea. Every once in a while a loose strand gets in my teeth. I chew on it and swallow. It feels like a blade of grass in the springtime. The green bitterness gives me life somehow.

I continue to bat 1.000 for getting majorly sick upon returning home from any trip away from home since my brain surgeries. I have not gotten sick during trips, only when I get back. It's like I am in survival mode on the road, tapping my reserves (and looking normal), but when I walk in my front door everything releases. My body turns on me and punishes me for putting it through those tests. A year ago I had pneumonia after coming home from a few days on the road. After Cabrillo last August my body completely shut down for several days.

Two days ago, after returning home from the Christmas and New Year's break, I felt the slight hint I could be getting sick. The trick with hormone replacement therapy is to switch to a "stress dose" when you sense this happening. I did this, but yet here I am. On the plane ride home, everyone coughed. The seats felt dirty, I was tired. The terminal at Newark had pigeons wandering about. Pigeons.

I know how this happened. It's the Diabetes Insipidus (DI). Managing a correct "breakthrough" every day is taxing, both mentally and physically, but it is critical to my health. To do it right I need several hours where I manage the breakthrough on my own. My DI is extreme, and when I sense it coming on I keep drinking water to stay hydrated while I make repeated trips to the bathroom, about every ten minutes. My thirst catches up with me and then I can only drink ice water. After that, water itself repulses me and I switch to icy club soda with either a splash of citrus or cranberry juice. The acid and the bubbles are the only thing to simulate thirst quenching for me as I continue to make trips to the bathroom.

Finally, after a few hours, I know the breakthrough has reached its peak. I know this because my legs buzz. There is a tingling sensation in my legs, a whooshing upwards just as I urinate one more time in the bathroom. A doctor has suggested this is me sensing my lymph nodes draining. That sounds weird to me. Anyway, my legs buzz, and when they do I hit the nasal spray which stops everything at once. But if I hit the nasal spray too soon ... it's 18-24 hours until I the next breakthrough. Anything I wanted to flush from my body will be stuck in there for another day.

That final draining—waiting for the legs to buzz—is something I just sense as the right thing to do, to stretch out the breakthrough that long. When I don't get to that point for a few days in a row I start to gain weight, feeling bloated and sick. When I string together many days of a complete breakthrough I feel spry and healthy.

When traveling, it has been virtually impossible to manage a DI breakthrough correctly. Plane delays and long layovers make it impractical to run in and out of the bathroom for those hours. I had one complete breakthrough during my vacation. I know this because I remember pawing through the fridge looking for club soda or Pellegrino, then raiding the bar for cranberry juice. It was one day out of five. And on the way home we encountered travel delays in an enclosed space with everyone coughing on me. I tried to stave it off, but my immune system—unless it is in pristine condition—can't win matches like that.

Well, it's 4:36am. I hate that, when you look at the clock and you think more time had elapsed. I wish it were two hours later, the sun coming up. I started writing this at 3:52am, so ... are you #@%&!* kidding me? Only 44 minutes have gone by? I'm making another pot of green tea, the hot liquid on my throat the only thing that can soothe me now.


  1. I am fighting off the onset of cold also, but yours just sounds so awful... those airplane rides really are horrible. I have some heavy duty Japanese mask you can wear covering half of your face (my mom sent during SARS), but then you will look like a plague :) But if you want them let me know. With your immune system, that must be so hard.... Sending big positive energy from NYC!

  2. Fascinating. My son, Isaac, also has a brain tumor, DI, etc....he isn't good at describing his symptoms. I just know that he wants water...and he wants it cold (he prefers to stick with water).
    I hope you get some rest. :-)

  3. Fascinating. My son, Isaac, also has a brain tumor, DI, etc....he isn't good at describing his symptoms. I just know that he wants water...and he wants it cold (he prefers to stick with water).
    I hope you get some rest. :-)