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Sunday, November 29, 2009

Hot Flash / Cold Flash

I have figured it out.

My hot flash problem, that is. For anyone facing massive hormonal imbalance following two brain surgeries, here is the cocktail:

Both socks on, pushed down to the ankles.
Very light sweatpants, both legs pulled up to the knees.
Zippered, hooded sweatshirt open and draped over back (no arms).
Wool cap with Detroit Lions logo.

That’s the perfect mix that will keep hot flashes in check. The bad news is you will feel the same as a good Chassagne-Montrachet, meaning you will be lightly chilled. You will want to warm up just a tad more but DO NOT! If you “give in” to the chill and add a blanket, set your stopwatch and in three minutes you will feel your legs melt, then an eruption shoot up your torso and out the top of your head. Your hands will get hot and your head and back will be drenched in perspiration. You will have no choice but to throw the blanket off, throw the sweatshirt off and pull your socks off. Four tortuous minutes later, the perspiration will evaporate and you will feel a sudden icy breeze blow through your body wildly. You are now close to freezing to death. You will be tempted to seek relief by covering yourself up again BUT WAIT! If you do this, you will have another heat eruption in three minutes. INSTEAD, cover just one leg. Do this carefully. Do this slowly. You will still be freezing, your hands will be shaking, your teeth will be chattering, but do NOT overcompensate for the freeze. Be patient and wait one minute with just the one leg covered. You will feel slightly better. Now, as your temperature begins to rise, S.L.O.W.L.Y. move the blanket off so only half of one leg is covered. You will continue to warm for the next minute. Now take the blanket off completely. If you are lucky your body temperature will rise a little more and (pray, pray, pray) stay there. You are not freezing anymore. But you still will be lightly chilled. Don’t move. This feeling right now is as good as it will be all day.

I did call my surgeon this morning because my condition in this regard is worsening, bordering on the totally ridiculous. I decided to call him because I was researching online and found (to my surprise) that my symptoms could be not just for my hormone zoo but also for a brain and central nervous system infection. This—I read with increasing interest—is extremely dangerous and often deadly. So I decided to dial my surgeon’s number. After all, he is taking my rare papillary craniopharyngioma to “tumor board” next month, and he’d probably feel bad if he had to end his presentation with the news that his patient—er—kind of died on him. So for his sake I decided to call him.

The good news is I (very likely) do not have a brain infection. There are simply too many symptoms I do not have (nausea, vomiting, spinal cord fluid leakage out of my nose, etc.) for it to be a real possibility. The surgeon on call decided to consult with my own surgeon, just to be very sure. He called me back and concluded, “You also don’t SOUND like someone with a brain infection. People with infections—and I’ve seen many—just have a way they SOUND.” As a musician, I appreciated this bit of intuition and candid confession from someone who is supposed to do everything ‘by the book’ with clinical data. If I wanted to be absolutely certain, for example, I would need to have a blood test and a spinal fluid test. Blood tests are easy enough, but the only way to test spinal fluid is to get a sample of it by inserting a big needle deep into my spinal cord, drawing fluid out and waiting several days for the test results. My symptoms are instead completely consistent with hypothalamus gland issues. This gland regulates body temperature and this is a common problem following my particular surgery.

Much of the day, it appeared to MJ I was “sitting still” but I felt just the opposite. I was in fact very active mentally, involved in the second-by-second unfolding of an internal drama starring “Hot” and “Cold” as competing Oscar contenders inside my body. Which one is about to sneak up on me? If I waited a second too long before ripping off my cap or my socks, God help me for the next fifteen minutes while I rebalanced because I was already way past exhausted. I resorted to sitting upright on the couch most of the day, eyes wide open on alert, sensing for the tiniest clue that something might go wrong. Try to picture Don Knotts guarding a haunted graveyard and this is about the right image.

I learned to recognize the signs of when I was about to explode and when I was about to freeze. Then I “taught” my hypothalamus gland how to react. I’m not a doctor, but it feels like my hypothalamus gland (about the size of an almond) was nicked or knocked silly during the tumor removal like a boxer hit too many times before the ref stopped the fight. The gland is speaking gibberish. Now it is my job to be the trainer. I need to slap this boxer a few times, splash cold water on him, give him an inspiring speech and get him ready for the next fight. (Cue Rocky theme.) Maybe someone else would throw their hands up, go to a doctor and say, “Fix me” (I'll be seeing an endocrinologist soon anyway) but my gut tells me this is just like my other brain functions that have been reset after surgery. I simply need to get a grip, find something to hold onto and lay down basic building blocks using survival instincts. Sometimes you need doctors to do the fixing and sometimes you need to look deep inside. As the surgeon told me today, “You know, this is no different from hot flashes women go through during menopause. Get used to it. Now you can tell them you have been there.” He cackled, which relieved me. I knew this was just a normal part of life.

Well, a little unusual for a 41-year-old male, but—then again—when is anything usual for me? Bring it. (Cue Rocky theme again.)

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