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.

Tuesday, May 24, 2016

The Song That Runs Under The Credits

People who clearly have too much time on their hands have asked why I'm blogging less than I used to... The truth is actually immediately under the Picking Up A Hitchhiker blog title, An Incredibly Raw and Uncensored Blog of how a Guy copes and hopes with brain cancer and life changes. Somehow life has been kind enough to where for a good share of life, brain cancer and life changes have been fairly minimal for a while. There's an MRI next week which has started to and will invariably shake my nerves till the results (and I hope less, not more after I get them but I never assume things are going to go well).

But there have been pleasant little reminders of life that keep me grinning. For a guy who has memory problems I should take advantage of facebook's memory features of on this day x number of years ago. However, since I'm a guy who tends to look forward constantly and so rarely back, I miss it most of the time but yesterday it popped out at me because of a joke I made. I had just started driving after the second time I got restricted (it last about two years, the first one had lasted about six months when this all started). A friend was excited that because of a new job they had gone almost 2 weeks without refilling their car, I told them I had gone two years. But now, NOW, I've been driving for almost two years.

I hope next week's MRI doesn't change the relevance of cancer in my day to day life next week. But right now the relevance of that the tumor and scar tissues creating seizures is under control. So now I am not riding a bicycle because that's my main mode of transportation but because it's fun. Livestrong day was last Friday where I had to pretend to be a little cooler and use hashtags in my instagram of #livestrong day and #bandedtogether. I looked through some of them and some highlighted just the band and I understand the power of symbols which is why it stays on my wrist, a reminder. But my picture was me hugging Kiana, the girl who it helped me livestrong with and band together and I thank them for many things but above all the cancer and relationships class where I learned the biggest tenant of my life, work on the relationships you want to keep. In fact this year, by virtue of the custody calendar, it will be the first time Kiana's with me during the Livestrong challenge so instead of riding 100 miles like I have 5 times, I'll be biking 20 next to her. There was a time I skipped the Austin marathon the 1st time to go through the finish line next to her doing her first 5k. That race was more meaningful than any including the ones I won behind her in a stroller. I dream that's going to be true as well for her. Plus with the way she's been growing, I'm fairly sure she's going to get a new bicycle before the ride and certainly will...

The electricity in my brain isn't causing me to lose control of my muscles or lose control of my brain. It may take a maximum twice a day dosage of pills with some side effects but hey that's life... or at least that's avoiding death. So the voltage in my brain isn't running wild, so I run in the wild. Another brain tumor survivor, Sara, talked me into doing a trail race last weekend with all of a few days notice. I did the single loop 10k. She was doing the 30k which was a triple loop that started half an hour earlier. Still I did her 3rd loop with her after taking 5th in my race. I put off brain surgery to run a marathon. She's coming out of a tumor and now in a later stage and age in life (I mean she's 29!) she's signing up for her first ultras, taking on tougher challenges. She likes to say I'm inspirational but she's doing harder stuff than I am and the one talking me into things. Let's just say that was the conversation and experience that finally got me to sign up for my first 30k trail race which is going to be at night. What could possibly go wrong for a guy who has no spatial orientation running at night on a trail? She ended up taking 1st grand masters. Brain tumors aren't making us pause.

So speaking of grand masters, why I blog less is because there's less things where my own cancer is relevant on day to day to stuff and I start to dream a little further out. It's like chess grand masters where they think a lot more moves in advance than beginners. I'm not chess grand master but I am please to report that the chess club I coached all year this year swept the competition. My daughter's school took 1st place in every grade (2nd through 5th) and the top 3 spots in 2nd and 3rd (Kiana took 2nd)! That was the only event that any school did that at. A parent who was there tried to get me to take a picture with the kids (I passed and let the kids just be the ones in the pictures). But the parent added you must be very proud of what you did... that is of course absurd since I didn't do it, all I did was coach those kids and pace that grand masters winner. The potential was always inside them, I just got to be beside it and witness it. That's a privilege.

The mind problems are still there, the damaged brain hasn't healed but hopefully remains stable. But in the age of digital clouds, I can make notes on my computer that show up on my phone or I can log into anywhere where the internet exists and I get to cheat that damaged memory. Other people call it compensating... I still don't know if its not cheating. But we hold on to what we can and try to do good things with it. Speaking of memory problems a few days ago was the first time ever someone didn't put some cash after Kiana lost her tooth. It was one with a metal filling on a stormy night so I said the tooth fairy was trying to keep herself safe so we wrapped it extra carefully and Kiana got her biggest gift ever from the tooth fairy... I don't know if that's teaching her that guilt trips can come with exorbitant interests rates.

I'm still helping out with multiple cancer causes but things like chess club or getting re-elected as president of the Austin Runner's Club (would I have won had I been running against the current US presidential candidates!?!?) helps to focus energy elsewhere as well. The two balance each other out I think because the cancer events help me appreciate everything I've got going and that I'm still standing and the non cancer events help give me even more energy to give back. All of our ARC events and membership have grown because we have had great boards with ridiculous focus and energy but like everything I'm currently working or part of, I wonder how I got so lucky to be part of such good teams? My constant joke (but probably the truth) is that it's because only really good people will put up with me.

So that's why I blog less because the hopes and copes of cancer are more normal to day to because they are less relevant. There were 2 years straight of medical appointments and now it's 2 years straight of driving because the driving restriction was taken away. There were a lot more medical bills than I could have imagined but assuming life stays all right, I will actually get out of all the debt of the last few years by the end of this one. The blog title today is actually from one of Kiana's kids movies, Jonah. It makes fun of the fact that the credits song rarely has anything to do with the actual movie:

There should be a rule that the song under the credits
Remotely pertains to the movie’s basic plot
That rule has not been made so for now we’ll have to say
Hey! Hey! Hey hey hey hey hey hey...

So mom, when you're worried about why there's less entries, it's just simply because I want this blog to pertain to the blog's basic plot. So here's hoping there keep being less entries, less worries, and more life. 

Monday, May 16, 2016

To Infiniti and Beyond

“When life itself seems lunatic, who knows where madness lies? Perhaps to be too practical is madness. To surrender dreams — this may be madness. Too much sanity may be madness — and maddest of all: to see life as it is, and not as it should be!” 
―Don Quixote

There is an apparent pattern of madness in March in my life for the last few years. In March of 2011, I had brain surgery at Duke during official March Madness. In March of 2012, I woke up in an ambulance again a few days after my first post surgery marathon. In March of 2013, I won the Gusher marathon pushing a stroller. In March of 2014, I went back to Beaumont and won the half.  In March of 2015, it was my first time to go to a new country since before brain surgery. In March of 2016, I got to be part of March madness, be part of a fundraiser against Cancer with Infiniti with March madness pick. 

Like any previous March the full effect isn't known immediately but sometimes it's not too far down the line you start seeing some where things are going. Those of us from Coaches vs Cancer got to be present for the check presentation from Infiniti to the American Cancer Society. It would be over $700K raised. For almost all of us who came, cancer was a part of the past and most of us were from Texas, so it seemed only appropriate to give this as we hung our hats in Tennessee. 

We would have a formal dinner with a smaller crowd where there would be some laughs, some impersonations of each other, some memories. Mike Thompson, the friend who had been a huge part of the reason I ended up getting to be a part of this had the bright idea that we should all share a little something in a more formal way. He started it and it was great to listen to his style. Each person would share things, some more simple than others, others more eloquent, but all human, honest, grateful to the cause, to each other, to the future. Quite a few of my teammates would say they were thankful for getting cancer because of the perspective, the appreciation it gives you for life, for love and loved ones. Just by sheer coincidence of sitting arrangement I was going to be the last survivor speaking.

I've said things in the past about some of the lessons I've learned from the cancer experience, some of
the mistakes and wise moves that were facilitated by that, some the strengths and weakness highlighted by that keen awareness of my mortality. I've said that I was glad I got cancer because maybe I wouldn't have picked up some of that progress without it. Perhaps because it's been 5 years of pills and medical appointments and bills and worries, perhaps because I dare have faith that life will teach us lessons one way or another, in simple honesty, I have said many times that cancer was a good wake up call, a good thing in my life but if I said things like that these days I'd be perjuring myself.

So when my turn came to speak, I remembered of all things, a place I volunteered in high school. Now I was one of the oldest in this young adults basketball event so I still remember the days pre-internet and personal computers. Back then I used to volunteer for an organization called the post polio syndrome society. It was people who had to deal with some of the effects that had come from having polio years or decades before. I'd type out a newsletter and format it and it would get distributed to people who had a range of neurological issues because of a disease that was no longer active in their life. I was 14 learning about a disease and its side effects, its long term effects, and the privilege getting to know it's survivors. It was a bit strange period much less at that age because well for all practical purposes it was a disease that no longer existed but here were lots of people still dealing with the aftermath, the long term effects.

I thought of using one of my standard quips from when I get invited to speak, it would have been less nerve racking that way. But I said what I hope that there will be a generation not far removed from my daughter's where cancer is just something like polio, something only the older people know about because it happening while once common is all but extinct. Perhaps in due time only a memory even for them, something that we educate people about the past.

The next day we were there at the formal presentation at Infiniti headquarters. This was far more formal with Infiniti talking about how this had led to different people reaching the website and inquiries about the brand. My favorite part of the Infiniti presentation was that the idea came late and they originally said well that sounds like a good idea for 2017 but someone dreamt big enough and they went along with it and it happened. It was dreaming big that allowed all of us to step in to the stadium where the Final Four would play and we'd get to do it not just as spectators but as athletes and advocates. The coaches spoke in suits and ties with my coach actually giving a nod to what I had said the night before. I have to get better at picking where I sit because they announced we were speaking again and I happened to be where I'd be the last one out of the survivors to speak. I said thank you again with the knees shaking but somewhere the heart sold or at least solid that a room full of people like this will continue to make cancer less and less relevant to the modern and future ages. It was tempting to quote one of my daughter's movies that the work they had done, the money they had raised would help people at "Infiniti and beyond" but I am guessing that they've heard that joke too many times but hey this is my blog so I'm sticking it in here. But in all seriousness, I think what we were all able to be a part of, no one in that room will ever know the full positive effect of.

A few days after I got home to see my doctors again on 60 minutes. When I was on E60, they interviewed my doctors but they didn't end up in the piece which was disappointing but it was good to see them there. The 10 year survival rate of my brain cancer is 12% but at Duke it's 18%, thus as a poker player, I'll definitely take 50% better odds even acknowledging they aren't great. Still, I believe the universe balance itself out in the end and somehow appropriately, and somehow at Duke those doctors and that institution that I've helped raise money for specifically, have found a way to take the polio disease and insert it into the brain and help patients who typically have a short time left now only having scar tissue and being cancer free. I have an MRI in a little over two weeks; there's no way to not be nervous because I'm not cancer free but perhaps even if this thing has grown, there's an option once again at Duke that there isn't in Austin (I went there for many reasons 5 years ago but one of them was no doctor in Austin would operate and were recommending others out of town). As the sign in the cancer center says and is echoed in my home, at Duke there is hope.

Perhaps the moment I liked the best in the 60 minutes was one of my neuro-oncologists, Dr. Desjardin talking about how she failed a patient because they hadn't gotten this far when he was going through brain cancer. His wife disagree with that assessment because they had helped keep him going to where he was able to be at both of his daughter's wedding and meet his first grand child. With MRI's looming, I can try to pretend like I'm not nervous but that's not true. But I find hope, comfort in that the races I did once behind my daughter in a stroller I get to do races next to her these days. Life is after all about love and connection isn't it?

Perhaps there's the balance of it. Polio used to damage a lot of people and has been made virtually insignificant. Than someone at Duke got clever and turned around and utilized it to fight cancer. A few of us cancer survivors have taken the lessons from the disease and utilized it to get better at life and positive connections. A car company helped us cancer survivors in the present and donated to research that will hopefully make cancer also irrelevant and perhaps someday someone really smart will turn cancer into something that fight's another disease. I hope and trust that this Coaches Vs Cancer was a step in turning life and love in the right direction and that it goes from Infiniti to beyond.