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.
Tuesday, November 3, 2009
Surgery Update - MEDICAL
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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!).ReplyDelete
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.
You're very much in my thoughts and prayers! Keep focusing on the light.
"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.ReplyDelete