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Tuesday, November 3, 2009

Surgery Update - MEDICAL

The past few days I have regressed so much I feel just as I did before the first surgery one month ago. As much as I hate to admit it, and in spite of my personal success yesterday "Skyping" my way to a first hearing of my new orchestral composition 2,000 miles away, all the good things I have felt blossoming inside me are replaced with this: I have splitting headaches, ringing ears, and a left eye so dimmed out I'm almost blind. The amazing breath of new life I felt in the first two weeks after the surgery is all but gone. To be clear, this is not a mental or emotional state; this is simply my tumor ballooning up again, squishing my pituitary gland down to a flattened pea, spreading my optic nerves apart lie two viola strings and pushing up on my brain, causing the massive headaches.

My heightened sense of smell is gone. I don't feel like I'm floating in an ocean anymore. I'm back in the familiar corridors and doorways. As much as I have tried to deny this sudden reversal of fortune, I'm back to feeling "not real" anymore. I am once again a fax copy of a person. I have tasted real living for a few wonderful days, and I want that sensation back. But the therapy for my mind will have to wait. My head and my body are physically in disarray.

Once again, I have a golf ball-sized tumor behind my sinus cavity that has puffed back up in a matter of weeks. I have no choice but to go back to square one.

In many ways, this will be a repeat of the past month. I'm having the same surgery but with a different neurosurgeon who specializes in craniopharyngiomas (now that we know the pathology). The recovery in the hospital will be the same. I'll have a spinal tap again (ouch). I'll have sinus packing again for three days (uggghhh!). I'll have access to the good drugs (oooo yeah . . .). I'll have to stay completely horizontal for weeks (bo-ring). I'll have the blood pressure cuff going off every ten minutes, waking me just as I fall asleep (annoying).

And, I'll be reminded how much I am loved by seeing everyone rally around me again (yes, you all have to do it again).

I am afraid.

The first time, everything was new. I was able to shake off the pain and discomfort perhaps due to the novelty of it all. How many people get to be a patient of neurosurgery—with all the sympathy that comes with it—without the looming question of whether your life would hang in the balance? As I have made clear, my tumor is indeed quite serious but it is not life-threatening. I thought I could make it through in one piece if I simply followed the post-op instructions very seriously. I did, and I let MJ take care of me.

Yet now that I have to go through the whole thing again it makes me focus on all the things I hated the first time (and there is plenty to hate about recovering from neurosurgery). I have blocked out the unpleasantness because I imagined the whole ordeal like driving through a tunnel without a rear-view mirror. All my attention was on the pinpoint of light flickering in the distance in front of me. The more I concentrated on my rehab, the larger the light became. The light beckoned a little more every day, getting larger, and I imagined the light as "The New Me." Stronger, healthier, happier, more genuine, more loved, more loving.

But last week the light started getting smaller. Even though I was doing everything correctly, going forward methodically and not looking back, the end of the tunnel suddenly lengthened so much the light is back to being a tiny pinpoint. And now I am trapped in the middle of a very long tunnel. I can't go back, and must keep going forward. I have all this work to do over again, and like in Kurt Vonnegut's under-appreciated "Timequake" I simply have to find that dense resolve and just go through every single thing again.

Only this time I won't have to harvest the peppers. Those are safely inside for the winter, so that is one less thing I need to do. Now I have a happy thought for the day.


  1. Once you've been "real," I don't think you can ever go back, even if it feels that way. From now on, since you have experienced life tumor-free, you can't say you are a fax copy anymore! You are not your tumor. You are a real person with some nasty symptoms. Ale is the man, and the tumor is the disease. This disease will disappear the day after tomorrow (woo-hoo!).

    I think I can speak for your minyans of friends when I say that we will OF COURSE be there for you again, during your recovery and always.

    Stay strong.

  2. Ale:

    You're very much in my thoughts and prayers! Keep focusing on the light.


  3. "I am afraid". How many times have I felt it, but been unable to SAY it. As if, by admitting it aloud, I give it some kind of power over me. But, you, my friend, say it simply, without assigning that undocumented (and undeserved) power. Thank you for saying it: I will gladly take some of your fear and hold it so close to my heart that the rhythmic warmth will cushion it. I hope you can feel it.