Sunday, May 29, 2016

Disturbed Silence

Someone recently pointed out that I look tired and I responded with that they were correct, I couldn't remember the last time I was tired. I reflected on that for a little while and then realized I've never been this tired, I have never ever in almost 36 years of life been lacking this much sleep. It isn't because of my endless pursuit of races, it isn't the the places I help or trying to keep up with the child with endless energy that the angels named Kiana. And despite the fact that I'm about 36 hours away from an MRI, it actually has nothing to do with sleepless nights caused by worry. 

But it is in fact because of sleepless nights. Austin is in the worst storms it has been in while I've lived here (it's been about a month or so of almost every night) and I have a dog who is very afraid of thunder. During the day, I can just turn on the stereo or TV loud and leave the lights on and she handles it fine. But at night, when Kiana's asleep  I have to take a different path and the thunder in the middle of the night gets her shaking and before long she's "petting" me and she'll continue to do so until I return the favor. At first I tried to pet her occasionally and get some emails but enough nights of sending emails at 2:00 in the morning and reading the responses to them made me realize that was a bad idea. So a guy who doesn't watch much TV actually joined Hulu for a month, watching it on my computer and I've gotten through the entire 1st 2 seasons of Empire based on a recommendation (whatever else the show is it has music bursting out from the characters so it's at least entertaining that way). I've downloaded only one song but it has made the nights a little shorter even if they aren't very restful. 

But I've used it to settle long neglected to do lists which allowed me to re-organize my calendar. For some reason Tuesday's MRI and Thursday's results, not in any bolder or louder format than anything else, just kept popping out. And just by the nature of the industry and it falls after a holiday weekend, I got a reminder from the imaging place and from my neuro oncologists office. For some reason getting it approved by insurance had fallen through the cracks so they made a few calls and suddenly instead of two reminder calls there were four which while double seems like infinitely more... Let's just say some of the last few nights it would have been helpful had there still been some episodes left because puppy got petted in silence. Well, it was not silence per se but there was no TV to distract my mind wondering about my brain.

I have a little soft basketball that I shot a few dozen times to distract myself but it's a nod to Duke so I kept going back to the morning before my brain surgery. I had snuck out the night before the biopsy to go on a run with an IV in my arm, I'd put off brain surgery to run a marathon. I tried to get them to let me leave after I had checked in for brain surgery but they said no (the other two I had company and this was me in isolation mode trying to do it on my own, my typical style). No one was allowed to stay in the room with me at that point and I had woken up before my family had arrived. So I went and walked up and down the halls and the floors and the stairs and anywhere, anywhere that wasn't a hospital bed. I walked for what seemed like hours, wondering why they didn't just have drive-through MRI's and brain surgery for early risers like me. That morning there was also an MRI pending, the last one before they would drastically change the way it looked, the day before the scar would be carved. Perhaps in hope, perhaps in fear, perhaps just as a distraction, I took in the interactions in the hall. As they would be at any medical place, some were clearly in relief, others serious worry and a moment that I can only dare dream of will be me. I didn't know what they had heard but an older man saying to his lovely wife as he hugged her with conviction, "as soon as we get out of here you can have whatever bottle of wine to celebrate." I stood there just absorbing their happiness.

But it was the only place I had actually stood and coming out of one of the rooms that I couldn't see in too was a song playing in the background. I might not have absorbed it but it was one of those instantly recognizable classics, Simon and Garfunkel's Sound of Silence. It was about then that I headed back to my hospital room and I'd get picked up for the MRI.

I've never quite made peace with whether that was the absolute best or worst song to hear before sitting in that machine before brain cancer surgery. I mean at this point, I was coming to full grips with that they were about to take a piece of my mind. I joked with my ever present humor coping mechanism to the attendant that maybe they'd realize they'd been mixing up my brain with other people and there wouldn't be anything in there so we'd cancel the surgery. I'd had friends who had athletic surgeries and had marked up the correct leg and the other one with "not this leg." I'd thought of doing something similar but never came up with the right idea. But there I sat the MRI, a place with loud whirring and lights, and the song played itself in my head. 

Hello darkness, my old friend
I've come to talk with you again
Because a vision softly creeping
Left its seeds while I was sleeping
And the vision that was planted in my brain
Still remains
Within the sound of silence


It's a strange place, an MRI machine. They give you earplugs to drown out the noise and it's still ridiculously obnoxious noise so what's it like if you didn't have those? During all that sound, I wonder if I couldn't use someone petting me. But perhaps it's comforting but anyone doing so would likely have as much control of what's causing the stress as I do of the thunder and lightning. Perhaps this is why I have my Grand Canyon idea so that no one's losing any sleep trying to comfort me over the electricity in my head and the thundering in there being out of control. Thunder storms eventually die down but cancer sometimes gets you to be the one who dies down.

They strap your head so it doesn't move, isn't cancer  and that brain tumor entrapment enough? They said back in 2010 something that I will likely not shake until and unless I beat it, "we're not going to be able to take it all out. Where medicine, we're just trying to get you to 40" when I had just turned 30 a few months before.  And I'm at several years of stable MRI's and 2.5 years without seizures, but that vision that was planed in my brain still remains. 

In restless dreams I walked alone
Narrow streets of cobblestone
'Neath the halo of a street lamp
I turned my collar to the cold and damp
When my eyes were stabbed by the flash of a neon light
That split the night
And touched the sound of silence


I have gone to almost all my MRI's alone. Kiana has wanted to go to to a couple and I woke up in ambulances and there were people there for those who had been there when that happened. But there are flashing neon lights. I'd never made the connection before but I wonder if they were designed to copy lightning and thunder, our own way to conduct electricity in nature. And it's cold in there, I don't know why. But without fail no matter when my MRI is they always put a warm blanket in there with you. I am sure it happened but I don't have any memories of being tucked in at night as a kid but the people conducting them always do so. Maybe I'll finally make a joke about them being good babysitters.

Oddly enough the MRI machine itself doesn't scare me, just what it might result in. What does scare me is the needles for the bloodwork before hand. I've ran under barbed wire and done many crazy things but a needle always makes me nervous. I lived in London for a summer and on more than one medical appointment I've been tempted to make a joke before the needle work about how "I hate bad pricks" with the double entendre ended. But I figured if they are annoyed with the joke or laughing at it, either may result in a less than desirable brick. 

And in the naked light I saw
Ten thousand people, maybe more
People talking without speaking
People hearing without listening
People writing songs that voices never share
And no one dared
Disturb the sound of silence


I generally close my eyes during these things but neither eye lids nor earphones block everything out. So I try to do it mentally. During that pre surgery one, I was envisioning the marathon that I had put off surgery for. All of the people who had cheered especially at the finish line, on that one my first time qualifying for Boston. I've visualized other races since then and while for a while it was looking back at recent races since almost without fail every MRI had a race shortly before it, a distraction point or another focus point, I'll never really know. Since becoming ARC president, I've made it after events we help out with since if results are bad, I'd like to have gone out having completed something. But in that naked light of my brain I see the people cheering go random stranger go. Imagine the friends that you get much too such short of moments with, a reflection that is a much better slice of life and love than any brain MRI could ever show. 

"You do not know, silence like a cancer grows
Hear my words that I might teach you
Take my arms that I might reach you"
But my words like silent raindrops fell
And echoed
In the wells of silence


There are people who wonder why I think it might change when it's been stable for so long. I try to work off the statistics that median survival without surgery is 4 years and with is 7 and I'm at five and a half. I also try just take the human approach. Emotionally I never asked why me the guy who'd never called in sick, who'd never done any drugs who exercised, was the one going through two years of appointments.  This is a cancer that has no known dietary, genetic, lifestyle or environmental components I've made too many friends who had the exact same cancer and because it wasn't fully removed, it eventually grew (I've made exactly 1 whom it never grew again). One of those guys literally beat me at a race at Duke two years ago, we took 1st and 2nd and he passed away a little over a year ago. Another had been stable long enough to where she and her husband had decided to think about having kids but it came back as stage 4. She went through experimental treatment and is doing well but decided not to risk leaving children motherless, a decision I understand. 

There is actually a cover of the Sound of Silence I heard recently by a band whose name is Disturbed. Still, if the weather prediction holds, it's going to be storming all week again so there will not be any rest while waiting for the MRI or it's results. I imagine I'll be listening to it some this week and have mentally committed to it being the last thing I listen to before stepping into that damn machine. I don't assume it will be stable or go bad. I'm not sure which is the more absurd side of the coin that the fear of death is illogical or that the fear of death is what keeps us alive. Acknowledging the actual emotions as opposed to just the "prescribed ones" is a healthier approach to me. I don't think we were designed with those emotions to ignore them. 

Nonetheless, between now and Tuesday, during the appointment where I prepare to get into the tunnel and see the results, I've decided to look forward. I actually haven't done a marathon since Boston 2015 but literally with less than 3 weeks and not having done any long runs since late March/early April, I signed up for the Light at the end of the Tunnel marathon in Seattle two weeks from Sunday. Kiana's coming with me and my little brother's coming to cheer. The last time that happened it was the first time I did Boston so who knows how the tumor in my brain is doing but the family circle is still unbroken. And I'm out there putting one foot in front of the other not to set some record but just for the run of it. 

And the people bowed and prayed
To the neon god they made
And the sign flashed out its warning
In the words that it was forming
And the sign said “The words of the prophets
Are written on subway walls
And tenement halls
And whispered in the sounds of silence”


This will be the 2nd MRI in a row that I choose to skip taking a CD home as a copy of it. For the rest of them I've taken it and analyzed it as if I had some clue how to read it. It never caused any relief nor gave any indication so it was an exercise in stress and futility. So if nothing else I will stop trying to be one of the people who bows and prays to this MRI neon god we've made. That race I've got coming starts with 2 miles in the darkness but light visible very small until you're back in the light. I hope that I'll be singing happy songs  So here is hoping that the words of the prophets that are whispered in the next two weeks are the ones from Ecclesiastes. 

A time to tear apart and a time to sew together; A time to be silent and a time to speak.

We did the tearing apart and sewing together a few years ago. Here is the MRI is enough of a disturbance to normal life and that dealing with my tumor goes back to being more silent and that this blog is a rare instance where it gets a time to speak. So here's hoping in a few days, all storms calm down, and like a bridge over troubled water, I will lay me down with an eased mind.

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