Friday, October 21, 2016

Manifesto Destiny

I am not sure I'll ever quite balance my skeptical side and my hopeful side. My hedges are always on the skeptical side but my hopeful side somehow has been kind enough to keep over riding reality to be greater than any expectations. The Livestrong challenge weekend was definitely one full of hope.

Just a few days ago, it was a chance to once again do the Livestrong Challenge. It would be my 6th but this time, this time it was different. The other times I'd ridden a century, one hundred miles, sections with people but never the entirety with anyone. This time, I'd been training a young lady, Kiana Leon, the daughter the Universe was kind enough to let me stick around to raise after cancer to do her first ride. She would be doing 20 miles, the longest ride of her 9 year old life. This one would be the first one where my parents would be there for the ride (they visit a lot more since Kiana was born but somehow rarely when she's not around... I can't quite figure out why).  I love that an organization that helps people deal with the mortality reality that comes with cancer, sometimes with death itself labels itself Livestrong. Furthermore that they call their event 'the challenge' because they have helped me and many Challenge our limits.

While it was my 6th, it was the Livestrong Ride's 20th anniversary. It was just a coincidence that this was the one that I was riding 20 miles with Kiana or was it? It was the first time Kiana would make a fundraising dinner because while she had made a goal of $500 of fundraising, she had broken $600. I had family there, friends, people I loved to my side, directly across the table and all over the room; people who had come to life irregardless of a disease and high on that priority list of my most important value, showing up and working on the relationships I want to keep. They are friends who I'd met through cancer but the connection was deeper than any disease no matter how invasive; light always wins over darkness.

Before I get too far into the weekend, before the formalities of dinner, I'd taken the early arrivals to enjoy the pleasure of their company. I'd shown them some of the best parts of my town from formal things to the things that help keep Austin weird to even taking them to the swing that takes you into the river. There were meals with friends literally that I had met and had meals with from coast to coast and everywhere in between, Seattle, St. George, New Hampshire, DC and we reconnected. No 'reconnecting' is not the right description, we simply got to enjoy the connection in person.

But there at the formal dinner, while I had relationships of every level all around me, my eyes were primarily on Kiana during the speeches and videos. I wondered whether this was ever my best move with her being the only child. She sat and watched it all including videos we were in of people in treatment, in pain. She listened to people talk about how they took too long to share their stories from the CEO and President of the Organization, about how in trying to protect others they had damaged themselves and their relationship but they were glad they had stepped up. Not only that they were now advocates people who had helped people like me who started the same way to step into a lane with a solid pace about realizing that life, worry about death, vulnerability like the air we breathe is meant to be shared. I was impressed by the discipline Kiana showed as she watched people talk about their stories including people sharing stories about people who cancer had taken like children, spouses. I'd grab her hand often or rub her back as reassurance. She'd squeeze back or look up and I'm not sure in those moments who was reassuring who.

Perhaps because I don't know how to sit still but I like to think it's that no matter where life takes you it's good to stay connected with people who were there when things went right and wrong. I got up the next morning to run a 5k, taking 3rd in it. From there I'd go play ultimate frisbee with friends who had given me rides once upon a time. From there I'd go have lunch with my team, the Cyclists Combating Cancer who coincidentally had been the top fundraising team, then a happy hour with the Livestrong leaders, then another meal with my parents before getting everything ready to go in the car. Good food and good company all weekend and it seemed so fast and I couldn't seem to take enough of it in. But as I loaded up the car with 2 bikes and helmets and everything for the morning, I couldn't help but think,  I wouldn't have bet on this day coming. I thank Life for the blessings that help me believe the unbelievable, receive the inconceivable, and see beyond my wildest imagination. I thought well I'll get a good night's rest but my dream life is while I'm awake. 

So Kiana and I got ready to ride the next morning. As we did there'd be friends who were from so many places and phases and were they hugged with conviction. People from running who I'd met before cancer, people who I'd met after because of it, friends from Beaumont where I won the marathon, from Canada, from Michigan. It was Kiana's time meeting many of them for the first time and we both rolled our eyes at each other appropriately when someone told us how great the other one was with me ribbing about how she's jealous of her dad's coolness and her saying she helped pick out my outfit. We got ready to ride 20 miles which started with a serious uphill. Kiana never blinked, never stopped and despite several people passing us because of their larger bikes and general people size, anyone who addressed her was with a word of encouragement. I did my first Livestrong ride on my own a few years back but my company sure had improved on this one. Even it was a tough up hill to start several miles, turns out the right company keeps you focused on far more than the hill in front of you. We'd only step briefly at the power stop to take in some water and calories and perhaps because we knew we were on our way home, perhaps because it was more than downhill we powered it in. She finished smiling and I finished with the biggest smile of any challenge I've yet to have. Cancer has brought many 4 letter words to mind but it was nice to ride with my favorite word on two separate banners, HOPE. Hope was my only 4 letter word that day. 

My parents had done the 5k while we were done and they were there waiting. I'm pretty competitive so I hate conceding losses but if there's anyone who hugs Kiana with more conviction than me, it's  her grandparents. I tried to copy their style of hugging her into hugging them. There may come a day where our best days are behind us but as 3 generations sat there loving each other and in love with life resting from their adventure, rest assured that day was not on Livestrong's 20th anniversary. 

However, resting can only be handled for a few moments by a 9 year old with Kiana's energy so it wasn't long before we were cheering friends in or hearing about their bike ride or 5k. Kiana's new found friend who had sent her arts and craft was the one who gave us the survivor rose. Survivorship in this family is shared. Nanny who without legs had skateboarded the 5k became one more person who Kiana learned to share it with. Like any good party, after the formalities of the ride and the conversations about how things have grown as Livestrong has grown up, we went back to the shaningans of birthday parties. Kiana turns out has a decent throw and got me in the dunk tank on her 2nd throw. She would try it successfully a few more times just to make sure that I was appropriately cooled off and cleaned after the ride and testing that new iPhone waterproofness.

At the Friday night dinner, they had shown a new video of the Livestrong manifesto. During the video process, we had all read it all and I'm not sure how they chose which lines to highlight in the video. I wonder if the ones that I got to say were the ones I said with the most conviction because life has been kind enough to let me live them out. "We believe in energy channelled and fierce... unity is strength.... you're in the fight of your life... we're about the hard stuff...take no prisoners... this is Livestrong" I'd watch it again Sunday night after putting Kiana to bed. It felt like it was first time after the ride since the first time I'd primarily been watching Kiana watch it. 

After a few good snacks and a few more hugs, we said goodbye, no see you later to some of those good friends and my parents as we headed back to each of our homes. But I just kept thinking Kiana's 9, I'm not even at 6 years of my cancerversary, what I've always called Life Part II. The Livestrong Challenge was just celebrating turning 20. By any standard those are all pretty young. I wasn't sure I'd even get here but that day made me believe or at least dream that we're still just getting started let's see what destiny keeps manifesting itself. 

Thursday, September 29, 2016

Yes and...

A little under six years ago back in October of 2010, a couple of weeks before the grand mal seizure would start , I had just started training for my 2nd shot at the Austin marathon. My first go-around I had done my long runs entirely on my own, the idea of getting up at the crack of dawn on the weekend to run 10-20 miles seeming what it is, absurd. You go out on Friday night and Saturday night and thus get up after sunrise on the next day, not before it much less to pound pavement. I was out doing 20 miles not too long ago and there were some people playing pikeman go at 5 am on the Texas Capitol as we ran through and one of my runner friends thought that was silly. I said it’s arguable which one of us doing the less intelligent thing since we were running in near 80 degree weather 2 hours before sunrise.

But when I was new to this having been up since like 5:30 for the first time, I had lived a busy Saturday with a 3 year old child and Costco shopping and this dinner, I was fading and got home at 9:00 PM ready to go to bed on a Saturday night *yep I had just turned 30*. Todd, a great friend, the executor of my will and a guy who had gotten into improv called me up and invited me to go watch an improvised comedy show.  I was tired and immediately tried to defer but he quoted something to me that I often said “No one says on their death bed…” with whatever it is I was trying to talk people into after. He would say “on one says on their death bed I wish I’d gotten more sleep.” I dressed and we went out for improv.

During the improv show, one of audience members threw out to the improvisers “worst lines ever delivered at a funeral.” I don’t remember any of those lines but afterwards Todd and I went out to eat and we joked around about how we would deliver the worst lines at each other’s funeral. At mine, he reportedly is going to say “Psh, so what I’ve got two other friends.” I recently updated some minor details to my will and sent it to him and he wrote back “Don’t use this anytime soon; my other two friends are going to require longer eulogies and I still haven’t started working on them.” That same conversation we realized we actually had a mutual friend because we had both donated to her Race for the Cure. I had helped out with fundraisers for charities before this and he asked why I’d never helped out with a cancer one and I responded with the reality at the time, “I’ve never really been close to anyone who had cancer.”

Less than 2 weeks later I’d be in the hospital with a grand mal seizure, waiting for a biopsy to figure out what this brain tumor like material in my MRI was. He was one of several good friends who visited me, I mean one of 3 and he asked what I felt like eating and I don’t know where it came from but I said “Hooters wings.” He responded with “well there’s definitely something wrong with your brain, who gets Hooters to go?!? But all right if that’s what you feel like, I’ll have them for you… right after the biopsy.” There’s a picture of me waking up not long after the biopsy, no one has ever noticed it or at least not commented on it but there’s some chicken wings right in front of it.

He would continue to be part of improv even invited me to attend a beginner’s class (if he’s reading and so everyone knows he’s not nearly as funny or as smart as my blog or these speeches even if he has a Ph’d, has been quoted in Time magazine, or has bigger hands). The nature of single fatherhood’s time restriction made taking a full time class unrealistic but I was fascinated by a concept they introduced or at least explained. Comedy improvisers have to feed off each other, off of audiences, off strange situations or unseen circumstances. They introduced the concept as “Yes… and” you accept the addition and continue, hopefully bringing the right balance of pathos and ethos into it. The concept they introduced was about how you roll with it rather than try to get back to where you were headed with your story or act. It may tell you how much I like the concept that one of Austin’s best improv and story tellers is someone I would trust with my child and the Bond girl whose been written about in here was also an improviser. Maybe that’s why they like me too.

See, I love the attitude and the encapsulation of it better. It’s not “yes, when” “yes ,but” and not “no.” There’s obviously a time for all of these things but it is my hope, my motto, a mantra that ‘yes and’ has become my default for life. This has led to some mistakes but mostly for me in the last few years it has led to some really cool things and even when it’s led to mistakes I’d rather regret things I have done than things I haven’t. Like Frankie said I did it my way and I just want to live while I’m alive.  I don't know the etymology but perhaps improvise and improvement have a similar beginning for a reason. 

It’s been a good September of yes and. Kiana and I lined up for the Brainpower 5k early in the month. I paced her at PR pace for two miles and then let her go with 1 mile to go. She beat her fastest 5k by over a minute to just under 24 which means the kid has now taken more time off her 5k than I have off my marathon in 2.5 years. There were some new ‘survivors’ there and more ‘in memory’ of signs. I take Kiana to these things hoping that she shares, echoes some of the ‘yes and’ attitude. That we acknowledge that brain cancer is a thing that has affected too many of us adversely. Yes it has and we can still do something positive. I’m one of the very few people that has been at all 6 of them. Our team has been in various years the top fundraiser, the fastest. On the 2016 version, I just ran right next to Kiana for the first two miles holding the pace she needed to PR and then she left and her last mile she took off lots of time. Yes this is a brain cancer race and yes we are going to train for it and show ourselves and those affected that we can still use it for focus of honor and memory. Kiana won her age group and came in 10th over all female and our team took fastest once again. 

Kiana and I continue to train for the Livestrong Challenge her first 20 mile ride. She is at $400 of the $500 fundraising goal she set (if you want to donate go here). We train honestly, outside when we can and avoiding some of the lightning yes we get out of outdoors then and even so set up an indoor spot for those days. 

I am speaking at the St. George Marathon tomorrow. It’s the longest speech I’ve been asked to give so I’m hoping they hand out pillows because it's better than if they  hand out tomatoes. I’m staring with the joke about how the first speech I gave was when running for Parliamentarian of the student body in 7th grade and said “By George, I’ve got the best option.” I didn’t mean it as joke back when I was 12 but it was well received. It’s come full circle. Maybe I had the yes and attitude just no verbiage for it a good chunk of my life but when cancer started for me there was a whole lot of hampering it because this and that went wrong. It was well maybe, once I take care of this. But the reason it started all again was the yes and. Yes I’ll give a longer speech and I’ll take some questions after.

The first Livestrong ride was new to me back in 2011. I had never learned to ride a bicycle and had to learn when I was 31and had the opportunity. I said yes and I rode 100 miles 5 times in 5 years. The first one was out in California and I made friends with Steve, a Livestrong leader. I hadn’t done any proper upper body work since high school and still signed up for Spartans which both then and now kick my ass. Yet I made some friends including two who we ended up sharing a communal room the first time I did a Spartan beast on the east coast at the Vermont Championships. The universe is kind enough to where both Steve and Joanie somehow are coming to St. George to hear the speech. Yes and Steve’s also going to show me around his town and Joanie volunteered to be the sweeper on the course the person who finishes with the back of the pack. Life has provided many saints and a few angels in my life.

I fly in and out of Vegas, won’t be there long and I hear that what happens stays there but I have limited time so I’ll just catch a little gambling, a meal, and a show before a middle of the night flight out of there. The show is Cirque de Solei covering Michael Jackson music and dancing. Got a cute date even. Somewhere in the middle of all that I’ll be running a marathon. I try to remind myself what I say in most of my race speeches that the race is the reward not the work.

With that attitude and being out of debt I’ve set aside a small amount of money every month to just do something that looks towards the future. None of it is a big deal, it’s just a sign of hope that the future has more “yes ands” that I’ve dared dream of for too long. This month I bought new silverware from Costco since I didn’t even have a full set remaining from the past. Call it concrete, I meal medal dreaming about that many good meals are still coming and that they should be properly served. Going to college in Napa Valley made some impression. 

Kiana has adopted the attitude. I took her to a new swimming spot a friend introduced me to on Monday. It took me only till Friday to take her and a Spartan trainer who was visiting town. All I had done was jump on Monday but immediately she asked if she could dive; I responded with yes and if I don’t break my neck you can too (it was plenty deep enough). Then she asked if she could do flips into the water and I said yes and let me take some pictures of that. We went back to the rope swing which we’ve done many times where we kept swinging. What was supposed to be the last swing her foot caught on the the rope after she let go and she was flipped and landed badly into the water. She came out crying and I held her for a while. I asked her if we could do it one more time together with me on one tree and her on the other. She said yes and we went out on a high note, fear from a bad landing was a hesitation for just a split second but it didn’t win the day. 

We went to a marathon kids kick off the next day. She ran more laps than anyone in the entire school in the 25 minutes allotted. Then just for good measure she went back out after everyone was done cause she wanted to get a proper 5k in. We stopped and flipped some tires at a Spartan event, then drove hour hours to Beaumont to speak at  a Livestrong event where Kiana heard some things she’d never heard before. She had a smiling face at some points, a quiet one at others and a big hug at the end. 

I still wonder if I’ve gotten any of this right. I still get nervous about each race. I still worry about every medical appointment. Yes I do and that is why we keep going. 

Friday, August 26, 2016

Life is Pain

I had an odd reminder recently. It was around now that I thought I'd be getting closer to wrapping up debt but if you read the last entry it was Christmas in July. So that calendar reminder came on oddly enough as Desperado played in the background:

Now, it seems to me some fine things
Have been laid upon your table,
But you only want the ones that you can't get
Desperado, oh, you ain't gettin' no younger
Your pain and your hunger, they're drivin' you home
And freedom, oh freedom, well that's just some people talkin'
Your prison is walking through this world all alone

It came shortly after I had written an email that quoted that deeply philosophical movie, the Princess bride, "Life is pain, anyone who tells you otherwise is selling you something." I'm sure pain comes up as a concept a lot but I just seemed to be noticing it far more this week. There's the constant pains of a guy who utilizes his body the way I do. That soreness, that out of breath, well Kiana and I did some hill work and spadework. Pain is supposed to occur there; there are people who might call it discomfort for semantics but it's definitely pain in my book. In fact I'm struggling with a achiless tendon injury right now where I've been trying new things including dry needling. Pain sometimes is necessary and I wouldn't even call it evil. 
I sat and talked with a  doctor friend about how more and more parents in the age of not giving kids immunizations are also skipping vitamin K injections. These injections are typically given at birth to help with blood clotting. Whether or not you agree with immunizations etc well let's just say I do and my kid has them all. However, what intrigued me was that a lot of parents choose not to give it not because of the risks that the opposing camp has but because they feel guilty putting their child through pain so shortly after birth. I've only been there for one birth in my entire life, Kiana's (well two I guess if you include mine but I don't remember that one) but um what's the polite way of saying coming through a channel much smaller than you are seemed to hurt all parties involved? A needle by comparison seems like a light thing and I want to point out, no one I've ever met remembers being born but most, if not all of us, would argue it was beneficial. 

Pain is life, life is pain. But some are tougher. Last year I spoke at an event as I have a few times. The cancer events are tougher for me because having gotten involved in the cancer community, I see the pains of death more frequently than I could have imagined. It's a rare week where I don't get to see the fragility of life give way to an invasive disease. Both the pains caused by those who are dying and those who love them. I'm known for being stoic, fairly calm, even waking up in ambulances apparently calmer than everyone else. But it's in those moments, when life is being robbed by a disease, that the guy who has language deficits but still gets invited to give public speeches, the deficit of language isn't one brought by brain damage. It's brought by a damaged soul where there's no appropriate words in my book. 
There are some that are slightly harder than others. Those of course are the people who I know best, who are friends, not just "numbers of people with cancer." Other particularly striking ones are ones who choose to be an active part in taking on cancer. I spoke at an event last year where someone else who was clean of cancer spoke after me. This would be the 5th time that the person who spoke at an event where I did would be dead less than a year later. 3 of those 5 at the time they spoke were either at the no evidence of disease or in remission at the time. Not the same three but again, three of the five were people with brain cancer. People sometimes give me a hard time about why I take life the way I do, why don't I think I'll be part of the minority that outlives the brain cancer prognosis. 'Living like you're dying isn't living at all' I've been told... I don't know how to digest that. We're all dying, perhaps the best reason to focus on the living. 
So I continue to live with adequate trepidation in my own Desperado way, on occasion letting some of the primal urges take out in physically acceptable outlets. But I also have learned to not only want the ones that I can't get so with a little more financial flexibility, I'm going to enjoy the fine things that have been laid upon my table. And I've done two things with the freed up finances, one was to replace a table. Kiana's on a cooking spree right now and she's been putting some great good on it (one of which came with a first degree burn from a slight slip and she took it like a champ. I wish I'd been immediately next to her when it happened but realistically slip ups happen. Knowing her dad's impetus to encourage independence but also his protectiveness, we hadn't even finished putting Neosporin on it when she was already trying to explain that it was an accident and that she still wanted to be allowed to keep cooking). Perhaps I've done too good of a job of explaining to her that life is pain, or at least has some involved but hey that pain and that hunger it's driving us home.  It was a few days but this year, on the first day of 4th grade it was the first time I wasn't the one who made the household breakfast on the 1st day of school. I'm not sure what spices she put into the pancakes that made them so watery eyed delicious. Somewhere in watching kids grow up, it can be a little tough. My parenting philosophy is give them roots then give them wings but the wings are tougher somedays. Still, I'm glad that while I can't stop her from growing or growing up, I'm very thankful that I am still here and not missing it.
The other thing that some money has been spent on is getting her a bike. I've had brain cancer for almost 6 years and during those I wasn't allowed to drive a fair share of it because of the accompanying seizures.  So I rode a bike and coincidentally ended up riding it in races 3 times but I also rode 5 Livestrong Challenges, each time riding the 100 miler and just due to custody reasons, it was always on a weekend Kiana wasn't home. This year is it's 20th anniversary and appropriately enough Kiana gets to join me for her first long ride, 20 miles. We're hoping to find 20 people who will donate to her fundraising
So perhaps there will come a day where there will be no more pain, no more sorrow, no more crying and no tomorrow. But that day is not today. Today life is or at least has pain. I am guy who didn't take pain killers after brain surgery or with sports injuries knowing that it provides information. Sometimes, it tells you to stay away from something. But in most of my life at least, I want to channel it, from sore muscles, from cracks in my sole and breaks in my heart, to use that pain as a way to grow, learn, and share the good lessons in life that come learning through pain. So maybe life is pain but I'm going to live it up while I can. 

Friday, July 1, 2016

Free At Last?

I often start these blogs with a reference back to a memory if for no other reason than to test if that part of the brain has improved any. But not too long ago, a brain tumor survivor friend of mine, Matt Cotcher, had a Facebook post that said something alone the lines of "X number of years ago they said to me if the brain tumor doesn't kill you, the medical bills will. They were wrong on both accounts." I found it rather moving, inspirational even because I'd been bogged down with cancer and the financial mess that came from it all for the last few years. I'd tried to dismiss the frustration when it all seemed too overwhelming simply by quoting  my grandfather, "If it's about money, don't worry about it, we don't have any." But I had a slightly unexpected surprise this week regarding money that I can't help but share (with that said, I know money's a touchy subject so if you're one of the people whose sensitive about that conversation, the right time to stop reading is now).

There were some financial realities between Kiana's mother and I that got settled earlier last month. So shy of child support, there were no financial things left there. I hate owing money so anytime I do I try to spend any money to it so any extra money that has come my way I have just paid it to anything and everything I owed from the mess of the last few years. The goal and therefore expectation that it would all be settled by August 1st of this year. I found out I had cancer a few months after I had turned 30 and I was daring to dream that I could knock out all debt before I turned 36 on 8/8/16. But on Monday night I got home saying that it was all paid and no further payments were necessary and that in fact I would be getting back a slight refund soon (if you have a regular standing job, odds are you made more money today than that refund).

To say I was floored is an understatement, even if it was a couple of months early by one account, it
was a lot earlier by some other accounts that I had envisioned a few years ago. I couldn't believe it. In the age of oversharing I put it on social media with something not quite as eloquent as Matt but that I was glad to still be standing with no outstanding debt. I'd love to tell you I got a good night's rest but I was just too overcome with whether or not this was real that it took me a while. In fact I dreamt that night about how I finally slept in and woke up at 9:30 AM, then I actually woke up and it was 4:45 AM. Dreams are so much better than reality somedays.

But not that day, that day the reality that I didn't owe anyone money was better than any financial dream I'd had for quite a while. It was better than any birthday present I could have ever received and certainly better than any I should have given. It was odd and perfect timing in many ways. I had actually been interviewed for a podcast the Friday before about the National Cancer Moonshot Initiative. There was the head of Seton's Neuro oncology program, The Policy Director for Livestrong, and me. Two out of 3 working brains ain't bad and I wish more of my interviews were for the radio because this face was built for radio. One of the things in both the formal podcast but in more detail in a lengthier conversation was that was the struggle in cancer research now. There are some more personalized treatments but some of those can cost over $100k a year and are literally meant to only help one person... If that's where the brightest brains go then those people with less options may never get proper care.

The doctor was from Seton which is where I went for all my local things. I joked to him about how every time I see a Seton advertisement I say, "Oh I paid for that." I repeated a joke about how someone said that when someone gives that much money to something they usually get something named after them (we'll let go that's usually when it's a donation not a bill but whatever). He reminded me how lucky I was to get to go to Duke and that I had the resources to do so. We talked about his predecessor, Dr. Brian Vailiant, who along with me has now moved on to Austin Cancer Center. He had clearly talked to him before and he spoke of the difficulty of balancing the dance between being competitors in collaborations in the world of cancer treatment.

But I was impressed with that he was talking about the science but also expressing concern about the less fortunate being able to pay for it. It came as no surprise after him sharing that that he had made it a goal to help with one of Mother Teresa's clinics and had gotten to meet her and how glad he was she was about to become formally a saint. I'm not Catholic but knowing both of their approach to those people with unfortunate lives and illnesses, it made me think that I'm blessed to be traveling in the footsteps of those who have gone before and that the saints are still marching in to be helpful.

The policy director pointed out that the biggest reason people reach out to Livestrong is trying to figure out how to deal with the finances of a cancer diagnosis. It may be fair to say that too much of modern society doesn't deal with their finances properly but the biggest cause of bankruptcy in the USA is medical issues and the two most profitable industries are healthcare and insurance. If anyone thinks that's a coincidence...

The Livestrong leaders were in town for a conference that hadn't happened since I had closed their final session. I am not nor have I ever been a formal leader but I made sure to get a chance to hang out with most of them each day. They were once again being encouraged, taught, re-taught why
dealing with other aspects of cancer matter now. I loved what one one of them said that they hope Livestrong becomes the 911 of cancer. 911 connects you to the right people, there's a reason that band is constantly on my wrist.

We'd have lunch after it was all over with a few of them and we talked about finances. I know it's a touchy subject but when you're dealing with people who you've been there for each other to talk about pretty invasive medical procedures and cancer has robbed you of too many friends far too quickly, money is less sensitive. They asked about how I pay the bills and it's a complex formula (if you want to trade taxes anytime let me know). I mean there are times that I've gotten paid to talk about my hobby of running a day or two before doing that. I know that's normal for many people but I still haven't quite understood it.

But we also talked about how the bills racked up. I discussed with them some of the comments on that Facebook post about the bills being paid off. There were things like the fact that there were 5 different events in 3 different cities to help when this all started (I've volunteered for all of the organizations before or after it happened trying to raise thousands of dollars but is there anyway to pay back someone saving my life).   Someone had asked for me to give them financial tips (hey be unfortunate enough to get cancer and then be fortunate enough to win a marathon pushing a stroller doesn't seem like sound financial advice to me) so I'm not sure I'm very useful in that area.

Speaking of salvation, there were many Facebook comments about thanking God. If you read this blog, you know I've never once prayed to beat cancer nor its bills. I didn't quite know what to do with those and while I have faith that there is a God I don't quite know how the balance of the universe all works out so I've never been ready to say that God is the one that's gotten me this far because I can't counter balance that with the people who I've seen go far too early. Nonetheless, I am thankful to the rules and Ruler of the Universe and people in the biggest proportion I can possibly imagine.

I told them the stories actually about how it was to go from underinsured to uninsured when I lost my job to uninsurable (whatever you think of Obamacare, in Texas I couldn't get health insurance with a preexisting condition). I told them stories that show my stubbornness or stupidity or fortitude depending on how you want to spin it. There was one of my doctors who said his institution let him write off certain patients and that I could be one of them. Speaking of money being sensitive, I told him if he ever offered that again, he'd be fired as my doctor. He never brought it up again. I shared with them about the fact that while I was uninsured a place sent me 5 bills for similar appointments none of which matched each other nor were none knowable in advance. I finally sent a strongly worded letter talking about how horrible this was period. I don't know if it was that letter or the fact that I was in one of their advertisements that made it from that point forward I knew what the appointment would cost before hand. I told them about how the place that I had gone to for quite a while for my MRI's literally made more money from me after I got uninsured because the rate the insurance negotiated to was cheaper than the one they billed uninsured patients even if they paid it all upfront. My mom recently had an MRI for an injury and she was blown away by a bill which I get regularly and I joked with her that did you think there was nothing new at the house because I was bored? If you think wedding, race or senior pictures are expensive try ones of your brain.

There were some good jokes about how I should get massively into debt with a business so I could do it again. I joked with a friend about how I no longer needed a sugar mama and he said whoa whoa, you still need one of those and get me one too. There were questions of what I would do with all this extra money. If you want a short answer, almost everything in my house is actually older than Kiana (so over a decade) except for the things in her room. I've actually made a list of things to get done on or in my house for the first time in years because I honestly would have bet you I wouldn't be here today nor that I'd even have the possibility of buying them. It'll be years before it arrives; I'm not going to go finance anything but I dare dream about more than just sleeping in.

But I'm also committed to continuing to help be a fun and fundraiser. In fact this year will be the first time ever that Kiana gets to participate in both events of the BrainPower 5k and the Livestrong Challenge. So if you're reading this and feeling generous, you can donate $5 to her 5th 5k this year. Or she's also getting ready for her first bike ride with Livestrong (on that list of things to replace at the very top is getting her a new bike). It's the 20th anniversary and she's going to ride 20 miles so if you're feeling more like donating $20. Either way, let me put it simply in either one, you'll be helping people who need money more than I do.

Still through it all, I kept thinking of the trail race that I went to do shortly after the last blog. It didn't go great; in fact I had an ankle issue about half a mile into it but I'd do 18 more. The pain wasn't pleasant but quitting wasn't an option. I've long said that running is my therapy and how much I run and how long I run tells you how much I need therapy. Perhaps it's appropriate than that the very last race I would do before getting out of debt was this one. You see it exposed my weakness, I'm not a great technical runner and I don't have spatial orientation and I had to do it with an early injury. Perhaps even more appropriate was the race director himself is a therapist and this night time 30k was the hardest trail race I've ever done but like all good therapy I think my heart and head were better for it. I took a tough fall at miles 12 and 14 and walked some due to the pain after those but I turned it back on the last couple of miles, helped by a friend who was doing the 60k. But it also helped that the playlist which I had made almost all about light and night that a song which I repeated a couple of times came on to deal with the pain in the middle of crossing a pond and some water crossings. It was a gorgeous night and while it was only in short glances I'd take in some of the constellations that were gorgeous. I'd keep checking them out as I waited for some friends to finish.

Take that money
Watch it burn
Sink in the river
The lessons I've learned
Everything that kills me, makes feel alive...
Lately, I've been, I've been losing sleep
Dreaming about the things that we could be
But baby, I've been, I've been praying hard
Said no more counting dollars
We'll be counting stars
I'd used it before but it never felt more appropriate than during the race until a couple of days later when that letter came in. Then the next day a friend invited me to do the hardest trail run I've ever done. It whooped me and the workout also didn't go that well but I'm already signed up do it again next week. 
Today as the 4th of July weekend opens up I got the reimbursement check. It's tempting to frame it but I'm not quite that sentimental. But that night trail race had a logo of those who don't take a chance won't get a chance and I took the sticker from it and put it on my water bottle which during Texas summer gets plenty of use. I'm glad some of the past, at least financially is, past but the chase for freedom was never supposed to be a walk in the park right?  I'm going to keep taking chances. 

Saturday, June 25, 2016

Not A Father's Son

People have said I roll well with the punches... I don't know if that's true. I'm not even sure I'm great at getting up when some of life punches take me down. Like much of humanity I struggle with change. It was about 10 years ago in June of 2006 that I first learned I was going to become a father.

In simple frankness, I'd wanted to be a dad and also feared it. While life and my mother were kind enough to give me a great dad early in childhood, I didn't meet my biological father till I was 15. So I didn't know if I had the instincts or the qualities and perhaps no child should have to be put to the test of it. So in fact my childhood sweetheart and wife of 5 years at the time had stated to a small group of friends and our parents that we weren't going to have kids. She was in the middle of graduate school, I was going to go afterwards then we'd be old etc...

But then... a surprise happened when we were 25 and 24 respectively. She had been throwing up (me ever the sensitive husband had noticed but done very little about it). I was out on a Friday night and she was home after some social work group function. She called me and said, "Can you come home?"  In simple honest I said "Come on you knew I was going to be out tonight." In the entire history of our marriage that would have resulted in okay or come home, one of the two of us accepting the change and that being the end of the dialogue. She said okay, I went back to socializing. About half an hour later she called back and said, "I need you to come home." This was the first and only time that this type of call happened twice. I responded with that I needed to say goodbye and then I'd head there but while I'm good at saying goodbye I'm horrible at leaving good company. Almost an hour later, I got a call that said, "I think I'm pregnant." In one of my worst responses in the history of my life I said, "Can I call you back?" and hung up the phone. I stepped back in and said okay I gotta go I think my wife's pregnant and walked out. Apparently I said it with such an astonished look that people didn't know exactly what I'd said or if I was serious.

I got home, tried to bluff like I was ready to become a father, and asked how this could happen since she was on birth control. She was but apparently this thing had like a less than 1% failure rate but despite me being a less than adequate swimmer apparently not all of me was. I stayed up all night, literally all night, trying to figure out how to financially be prepared for a kid. Two weeks later my mom was in town for a conference from her job and we sat her down and she was thrilled. Oddly enough it was actually on father's day we told her, a fact I would not notice for years.

There is an old saying that women become mothers when they realize they're pregnant and men when the baby's born. I dreamed up of how awesome my son would be, how we'd play sports together, how I'd do all the dad/son things that I hadn't had in my early childhood. She was almost 3 months pregnant before she realized it and so it was only in the second appointment where we'd find our daughter's gender. I smiled and then thought... well there goes that idea now I'll live with only women, my wife, my daughter and my dog. So I took on an approach that life as I knew it was soon ending and I might as well enjoy it before the baby was born. I'd be gone multiple weekends before the child's birth, including 5 or 6 in a row for ultimate frisbee tournaments. I had some poker nights, went to more happy hours in those few months than I had probably the rest of my life combined. My wife was at many of those things though not at all since she was well tired and let's just say that type of approach during pregnancy doesn't do a marriage good.

Nonetheless, when Kiana Lys Leon was born, it was amazing. I'm a guy who can't handle bodily fluids but I was there and didn't pass out and cut the umbilical cord. Turned out life wasn't over. I took a paternity leave while  her mother went back to work for a few weeks before becoming a stay at home mom for a while. I read to her all the coolest books that the world had ever known. I played music and danced with her.

I got back to my life too quickly though and my wife and daughter were part of my life, nowhere near high enough priorities and I tried to balance it all not in the right proportion. Four years later, I'd be diagnosed with cancer and frankly took some of it similar to fatherhood, trying to figure out the bills. I went on a goodbye tour to all my friends in Texas and California thinking life as I knew it was ending the day of brain surgery. Some things changed and some things stayed the same, there was certainly far more change in circumstances than there were due to Kiana's birth.

I handled the communication even worse in marriage and that ended and somehow I've ended up with primary custody and I'm at almost 5 years of that. There's been stories of how I put off brain surgery to run a marathon and qualified for Boston, there's been stories of how I won one pushing a stroller. But the stories I'm more proud of, the ones that bring more joy are the ones of where I did races right next to her or got my mom to do her first half marathon at age 60, I was right there for. Or the one where my dad did his first 10k at age 70 and several other races but without exception did them all next to my mom, showing his wisdom at racing long before I did mine. There's something about keeping pace with the ones you love and the one whose showing love is the one whose helping you move.

So I recently went to Seattle for my first marathon since Boston of 2015. A year ago I hadn't done a
trail race at all and now I've done one of pretty much every distance (some far more technical than others). This would be my first trail marathon, the Light at the End of the Tunnel. My little brother would come out with his wife, and son and hung out with Kiana while I raced (without exception every race I've traveled for has had at least one of 2 things, somewhere I've never been or somewhere near people I care about, often both). Because it was on a trail that wasn't accessible there were very few spectators so it was really all about being in your head. The tunnel it referred to knocked out the GPS watch from being relevant. I got fortunate enough to where there a few guys fairly close to my speed and the competitive spirit kept me moving. But I think the real reason I got my fastest marathon ever at this race (3:00.09) was one thing and one thing alone. When Kiana and I do our races, I get her water and give it to her a little bit after the water stop (we learned early that her trying to get it from volunteers has led to her getting almost if not knocked over). She had said once long ago that she appreciated that a lot. At mile 16, my little brother, his wife and son were all along the side of the road taking pictures of us. I didn't see Kiana which worried me but then just about a hundred feet forward she was at the water stop. She had asked if she could hand me my water for once. There are almost zero race pictures of me ever smiling but I'm not sure anyone will ever catch a better one because I've never been sure which one of us is raising who but on that point I know who was taking care of who during that race. And that was the moment I kept referring back to when I struggled on the second half of the race.We went straight from there to the Seattle Zoo with my brother which we saw the entire thing which I think makes it be the day I moved the most ever in my life. But there was no way I was asking my support crew during the race to be bored after cheering me and both in spirt and in body, I am beyond certain it helped created a faster recovery.

We'd be back a few days later to do the Spartan race on father's day weekend again. Kiana kept asking if she'd get to do the adult one (something not allowed till kids are 14, an age Kiana magically has turned to twice before). I knew it'd be tougher in a Stadium race where you're far more visible than in the single track of trails. We tried anyway and got to complete it with Kiana destroying obstacles that grown men and women next to her were struggling with. I was with her side by side on some and in a safety spot in others. Expectations had been made clear as before that she had to attempts all the obstacles and do burpees if she failed at them. There was no walking allowed and no complaining. She fulfilled all that and more. Over walls, up ropes, on monkey bars, she learned that life is brighter six feet off the ground. All I can say is that my daughter is more than I could have ever dreamed of.

The next day at Father's Day she gave me the best father's day card I've received yet. Each year oddly enough it's the day I get the most greetings outside of my birthday. It seems from social media a statistical anomaly comes up every father's day that everyone has the best dad ever. I know one person, me, who is called that, it's inaccurate but I do have the best daughter ever no matter what everyone else thinks about their kid ;). Her all but life-size card had reference to many of our in-jokes including mine about how my favorite person is bob (a coming alive of the Bob stroller joke I've kept going for years). My mom was in town for the same conference and perhaps the world has come full circle and complete in that she helped her with the card and the first time I think I've ever received breakfast in bed on my 10th father's day. We also did our annual professional pedicure and hanging up our medals.

Just as meaningful of a moment was her smaller card she had made which now hangs on display at my house. I have no arts and crafts abilities, zero. But Kiana has them and I've continued to get her new things to try out and make. The latest is a tiny paper folding thing that came with ways of making particular objects but now she's been making ones of her own. She made one of me running and as the guy who always runs with music she threw music notes in there. One of those chocolates must have come open with sodium that got in my eyes. In the marathon, I had listened to a song that I heard the last time I was in New York when I went to see Kinky Boots, Not My Father's Son. It stood out to me for many reasons but made me think of having wanted a boy "with the strength of sparta and the patience of Job." Between the actual Spartan and the cards she made, she has shown both of those plus all the charms of a very feminine young lady. I've tried as best as I know how to let her breathe freely as herself in both the ways she's similar and the ways she's very different than me, to be profound enough to always live out loud, to never have to mirror what's not in her. I don't know why the universe has been so kind to me with this daughter but I am grateful.

As I said I'm not really clear as to who is raising who, so I am going to try to continue to learn from her  and hope she's learning from me. A year ago I had never done a trail race when someone tried to get me to go over to a lane. It was a trail race that starts at night and if you do the 30k or the 60k you're going to have to run at night. Immediately, from practicality or fear, I said a guy with spatial orientation absence and a history of seizures, said I'll do the 10k and be done before dark. I did and I won it but never did race a night one on my own. I raced one with Kiana in August and despite a few falls she finished it with conviction (we were always in a  crowd so I felt more safe). A year later I've won some and my fastest marathon is on trail but I still haven't done a night trail race. Well, that will only be true for one more day since I'm doing one tonight, a 30k where I'm guaranteed to be in the dark. I don't have a son and perhaps will never quite be an adequate father's son but I am going to try to learn from some of the fearlessness of my daughter, and that the best part of me is what she brings out to see. Perhaps running from my weaknesses and my fears will keep being further in the past and adapting to them will be where I'm running to.

Sunday, June 5, 2016

For the Run of It

I'm not very good at ceremony. I'm certainly not opposed to ceremonies, I just don't personally like to be part of them. Being the first in my family to graduate from college, I wanted to skip the graduation. My mom vetoed that idea quickly.  I rarely do birthday celebrations (the 3 in my adulthood have been 18, 28 (08/08/08) and 30. Medals on races that I do alone last all of a minute or two on my neck.

This of course is an oddity at best because I love being on the other end of things. Many of the races I've gotten to be a part of I've stuck around handing out medals till the last recipient, handing out happiness is what it feels like. There was someone I crashed into a race that came up and remembered that I was the person who handed them a medal at the first marathon they finished. There hasn't been a year since Kiana was born where I haven't thoroughly cheered commenting one more year of life. And in the last 3 days of school alone I was there 3 times as she had her last music share and two performances. I sure like to think I'm raising a princess but at some level I'm a little worried that she landed two of the leads in the 3rd grade drama class and the UIL drama club (they revisited two classics Queen Midas who turns everything into chocolate, very disappointed she didn't practice that at home and Princess Cinderella whose shoe problem was caused by the fact that she was a shoe size 87 1/2). And there might have been a parent who was happier or more proud of their kid than I was but I doubt it ;).

Some might see it as a bit strange to be doing all of this in the middle of MRI appointments and it's
results or perhaps some might see it as a way to distract myself from the suspense of those long 48 hours. I would like to believe that it's strange that cancer interrupts any of those things and believe you me, they weren't there to distract from cancer at all. In fact I would be highly disappointed in myself if cancer had distracted from my full focus on those events.

Still, the MRI happened. I finally got the courage to make a prick joke to a new attendant who found it hilarious. I did listen to the Disturbed version of Sound of Silence before heading there to get injected for blood and then to get reinfected with a medal dye that has all but once made me throw up and then washed out by saline. I sat and tried to think about the things that had gone right in there since cancer, not the seizures, not the surgeries, not the bills (those thoughts must have gotten magnetically pulled in there but I kept dismissing them). I thought of the fact that my parents had never ran a race before all this and thought of the one we had just done. This was one of my favorite races of all. My parents PR streak finally ended on it because my mom's been having a knee injury. My dad, showing the man he is, has never once done a race at his own speed and always done it right next to her. This was no exception. Kiana and I watched them come in and they were lovely. My mom used to try to come for my medical appointments but she has finally accepted that the image of her doing these races is a much bigger factor in the imagining in my head going well during an MRI.

And it wasn't just any race, it was one put on by the Austin Runner's Club. While I gave my mom bib #29, my dad #71, and Kiana #9 cause of their ages (and I took my #8), the race really is in it's 39th year. It had hurt a little with about a 100 participants and it was one my biggest hopes when this board took over that we could bring it back a little. When the race was done we had over 350 registrants. Kiana did manage to continue her 2 plus year streak of PR's. I had my watch set to the wrong settings so I could only tell at the mile markers approximately what pace we were at (didn't tell her that). I was hoping she would break 26 minutes and she ended up breaking 25 with a 24:57. She would also be the top fundraiser of the event with $650 towards Marathon Kids, a program that's just about kids running. Did I mention I'm not big on medal display? Well Daisy had medals this year and like all the ones that I've earned beside Kiana, it hangs in the living room prominently on display.

The results appointment was actually almost immediately after the last school assembly. Kiana got straight A's in 1st grade but missed a couple of days of school. In 2nd grade, she got perfect attendance but had one or 2 B's. In 3rd grade she nailed them both. I sat there and watched her glow at the results knowing well, if nothing else, I hope I've encouraged her that showing up is a good predictor of success and once in a  while you get to nail them both on an upward trajectory. I might have heckled a parent who upon seeing her kid get one of the awards that Kiana got asked, "oooh what did you get for that" I responded immediately with she got to have a chance to learn more. I hope Kiana keeps much of her motivation in the internal reward not just the external one.

So those were the thoughts going through my head during the MRI. When I got to the results appointment, I was in the waiting room looking at the magnet on the table where I was filling out forms: "Treating cancer is caring for people." The doctors I got are great at treating cancer if that's the definition.

I got called in and weighed and pulsed and asked the traditional questions. I honestly didn't remember anyone in the room but they all asked about what races I had done lately. Then I got put in the next waiting room. It was different because it had a window with a  great view of the University of Texas. I don't know if the other ones didn't have windows before or just not much of a view but somehow it just felt right to be looking at a place I'd given speeches to doctors, pre-med students, raced alone, raced with Kiana. It sounds silly but that just was a comfort in its own way that before I got an internal view of what it was inside my skull I got to look down lanes with memories, to be reminded that I got to choose life with a view. 

The doctor came in and said my scans showed everything stable. He was wearing one of his signature bowties (bowties are cool!). We went over the scans from this angle and that angle, with contrast and without contrast. He went over realities that in the best case scenario they would have been able to remove all the tumor but that in my case my tumor was most likely dormant and may well wake up (where and when the mystery). But he talked to me about the latest phase of where brain tumor treatment is at Duke (coincidentally I was wearing a Duke jacket) with optimism but with reality that both he and doctors at Duke, Md Anderson had seen phases that got past phase 1 at trials and petered out in phase two or with a larger population. This was and is still only being used experimentally on people who it's aggressively growing but who knows there may come a day when it's able to used on people who have dormant tumors and come out with no tumors.  It was a cautious tone that said don't hold your breath but don't give up hope. Did I mention Dr. Vailiant rocks?

He then caught up about what races I had just done. We did some memory tests (I passed 2 our of 3) and he was impressed that I recognized we were in a different room since my spatial orientation doesn't exist. He thought it was memory but when you've been in enough medical rooms and waiting rooms and realize they have an entrapped feeling, there's no way that window with that view doesn't stick out in your heart of hearts, isn't that where the best memories are forged? He talked to me about running with his kids in a double stroller. It's funny he always tells me about his running and always prefaces it with "I'm a runner, not as good as you." I've never done it but I'm tempted to respond with something witty like "I have a brain, not as good as yours" but I always think of it after the fact not at it. 

I told him that I'd been re-elected as ARC president which led to some jokes about the current state of getting elected president in the US today might not be as tough as it should be (neither of us said who we voted for so far but in case you're wondering, I voted for Pedro). We also talked about how aging is affecting my running, that I'm still hitting my times but recovery is getting harder and for the first time ever in a medical appointment he stated the obvious, that time catches up to all of us with aging and death. It was not a deep philosophical remark but it was somehow refreshing to hear from a guy whose monitoring my life. 

But I got to answer a question which had taken too long to answer. Back in December of 2014, he had talked to me about the New York marathon, knowing my results in advance because he had live tracked them. He said what race do you have next and at the time I didn't really have anything on the calendar. In June of 2015 and in December of 2015, he had asked similar questions and gotten similar answers. Perhaps it's coincidence or perhaps it was subtle encouragement to look further than to the next visit to him but he'd be saying it me for the last 4 MRI's and never had an answer.

It takes a cursory reading of this blog to realize I race and run a lot. I've long said running is my therapy and how much I run and how long I run tells you how much I need therapy. In fact in my public speeches at races, I say "I never know whether I'm running to or from something but I keep running." However, a simple rule in most of our lives is if our words and actions contradict each other, our actions are almost always the ones telling the real truths. I mean I put off brain surgery to run a marathon but that's not where the pattern ended. If you look at November of 2014, May 2015, November 2015 each of them kept being the month that I did more races than I had ever done before. The MRI's feel and have been treated like a game of russian roulette where someone else is spinning the wheel and who knows what is pulling the trigger. So I've ran hard before each of them and then the month immediately after them are the lightest... some might think that's intelligent recovery planning but that's just not true. It was me afraid to make a commitment thinking that it was going to take time to get my affairs in order. I mean I did literally 3 races in 4 days before the last one. 

I did it different this time. The week before the MRI's I registered for multiple races, 4 of them within the next 3 weeks, a 5k, a marathon, a Spartan and my first night race. There was a further one out, the St. George Marathon, where I'm a speaker and originally I had plans to go to the Grand Canyon out there on my own but before stepping into the doctor's appointment I said that I was going to Zion with good company cause the Grand Canyon can wait. I dared to dream for the first time beyond the MRI. Somewhere between now and the next one I hope to get the courage to sign up for a race beyond that one. 

I sat in my car, relieved at the results and breathed thinking about reality, promise, the past, the present the future. And for some reason Emily Dickinson came to mind, I realized death will eventually catch up. However, I was grateful that I hadn't stopped upon becoming so keenly aware of my mortality. I combined the two thoughts with a nod and realized that I had not stopped for death, it has yet to catch up to me. I didn't do any great ceremonial approach upon finding the results. In fact after the last day of school, Kiana and I just went to the playground and then afterwards we did some hill repeats. 

How will life go, probably as well as the races have, some good, some okay, some great, some tough? But what can I say, it took me a long time to learn that the coping mechanism should get me not just to medical appointments but through them. It won't for me ever be primarily for the medals or even the times though I doubt I'll be completely not competitive. So until death do us part, I hope I keep enjoying life and these races for the entire run of it. 

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.