Monday, June 24, 2019

Gone but Used to Be Mine

It's not simple to say that most days I don't recognize me
It's not easy to know I'm not anything like I used be, although it's true
I was never attention's sweet center I still remember that girl

The above quoted line is from the only musical I've ever purchased only one song from. There are some I've purchased the entire album, some none and some several but this is the only song purchased from Waitress. She's reflecting on what her life comes from unexpected growth, in her case a child from an unplanned pregnancy. I was one of those and I've also had some unexpected growth that was life altering and as it theoretically at least is about to get a less regular part of life altering, I keep thinking about how the normal in my life has shifted so much. I say change is life's constant often but despite my good heart and lungs, even I have to catch my breath sometime when I sit and think about the last several years, the good parts, the mistakes, the variations. I had a goodbye tour before brain surgery; I didn't call it that to anyone but myself and most people heard the affection but it was also a whispered shout of fear what I said at the end of meals in places I'd lived: "I'm not sure if the guy going in is the same one coming out but this one loves you guys." I'm not sure I've yet acknowledged to anyone myself included how I don't recognize me on most days and somehow I still remember the pre-cancer, pre brain surgery guy. This blog is a faint attempt to do so. 

She's imperfect, but she tries 
She is good, but she lies

I'm so far from perfect there's no point in even trying to diagnose that. But there are moments where I realize the pursuit of perfection was an honest desire of mine. I was that nerdy kid who got the highest grade in the class, a 98 or a 99 and didn't care about the good great or it being the highest but about which questions I've missed. I don't know where I learned that but perhaps it's genetic because Kiana missed exactly one question on her standardized tests this year and she wanted to. know which one. Turns out now in the age of tech savviness I could actually look up all the questions and see which one she missed and what kept her from keeping a perfect score was appropriately a math question about absolute value. 

Now the amount of notes and calendar appointments and spreadsheets I keep makes me wonder would I have been a suma cum laude graduate with two degrees or valedictorian if it took anywhere near this much effort? I had a roommate who studied and studied as he was from Argentina and still working on his english and at the time was not getting as good of grades. He's now got a Ph'D but I gotta say there was probably never a point where his grades weren't more honestly earned. 

But speaking of honesty, I often say I have a lot of bad qualities but pretentiousness isn't one of them and I assure people at all levels that I'm never going to lie to them. This is perhaps the biggest deception I share. While it is true that I never lie in telling anything that's because lies take memory to recall and when your memory is this damaged... the truth was better anyway. But with general memory and the facial recognition issues I have, I lie to people all the time who wave at me clearly knowing who I am and I have no clue. The worst of these perhaps is when I am carrying on a conversation with someone who I've clearly talked to them but I am asking questions trying to figure out who they are (I have a decent batting rate). But I've been lying to their face because I don't recognize it and I wonder how many people were able to tell. The way I remember so many people is through distinctive marks or piercings or tattoos and others I study them on social media in a way that would be creepy in person. But I've deleted so many people on social media because I'm very overwhelmed by the strangers that keep track of me because of positions or media and thoroughly underwhelmed by what feels like replacing many likes and heart and shallow connections for more serious ones. 

I am never quite sure but there is not a day where I hope that these aren't good tries at life. 

She is hard on herself
She is broken and won't ask for help

I'm onto my 5th year as ARC president, a cause I took on this damaged because I believed the
running community was a huge component in saving my life. Like the fundraising I've done for Livestrong or Duke or Brain Cancer research, there was this responsibility to pay back. On Father's Day Kiana had worked and earned some money and kept insisting that the money was to be used to buy me steak. I told that story a few times because she wouldn't let it subside. Someone gave me a gift card for a steak house and Kiana was impressed at one of if not her fanciest restaurant experience. Like all of my other faults, I don't know whether encouraging or discouraging avoiding them will be particularly productive. On the cancer side, I still try to pass it forward. I still go to hospitals and hospices and funerals and a fair share of them on my own. Along that line of being honest, I am unclear as to whether having let Elaine come to a few is progress or adding more. I'm still broken and still don't want help.

We as a family have been playing games like Hanabi and Codenames more, my two current favorites. They are great games, games I would have liked at any point in my life but were just introduced later. They are cooperative games where you're working on winning together on beating the game, the other players aren't your competition. But they are also words that necessary skills are language and memory, the deficits I feel most painfully. I think there's times I've frustrated both my wife and my daughter at how the game is playing out. I've told them this but without literally being inside my head, I am not sure anyone could ever understand that I'm desperately trying to beat the impossible, a guy without brain damage.

She is messy, but she's kind
She is lonely most of the time

The local ARC election made me realize some of the gaps in my leadership. I took over an organization that had its own gaps and many of those improved due to good focused teamwork. However, there were some things I missed in the mess, some inherited plenty of my own making. I was genuinely surprised at how mean some people were about it, with some making direct remarks at my wife and my 12 year old daughter. I've tried to respond in emails and messages that have kindness and are above board but I am not in denial that some of the damage is done. Some may be irreversible like any damage but as a guy with a scar on the side of his head, I know healing is not always a clean process and hope that we can make some progress there.

Perhaps the very writing of this blog comes from summer's loneliness. Summer ends up being some of the happiest non productive times because Kiana's not in school and so we have a lot more adventures once she eventually gets up. But part of the summer is also the toughest time because she's gone to spend time at her mom's house. Almost invariably summer time is when I run the most because well I have more time to kill. However, until this year it was also when the dog and I would the longest walks in the woods. Not too long ago they were longer in distance and in her more tired years they were longer in time as we were talking slower. I keep staring at the dog door or where the dog bowl used to be and getting watery eyes. We moved a huge percentage of the decorations around to make that focal point shift and changed pictures in the frame but my memory, thank God, isn't that easily fooled.

It's not what I asked for sometimes life just slips in through a back door
And carves out a person and makes you believe it's all true

A friend from college recently asked me to help them as they train for their first half marathon. Another who hadn't ran since college just finished their first after some guidance on which one to pick. Neither remembered that I ran in college. I was also on the track team from 3rd grade through high school.  I've played some sports and been part of clubs  Like most kids, I had many interests but while I was in band in middle school and high school, running has been my most consistent side gig if you will. Yet because I was the nerdy kid that's where anyone who wasn't on the track team remembered me. My diplomas or academic certificate never once hung on a wall and yet tropies and medals are displayed in almost every room in my house. The story of the guy who put off brain surgery to run a marathon and who won one pushing a stroller are an identity that still exists and it's embraced me or is it the other way around?  I even had a running themed wedding less than a year ago. I both love it as a place for friends and family and as a coping mechanism and as a place where brain surgery didn't cost me losing a step. 

And now I've got you And you're not what I asked for
If I'm honest, I know I would give it all back
For a chance to start over and rewrite an ending or two

As I sat and decided whether or not to have surgery, or any major life decision, I generally try to not look back because time travel is not possible and unlike little life decisions, there's not room for correction. But I hear cancer survivors talk about the things that have come out of their disease or its treatment that made it worth it to them. The awareness of mortality shifts lives often and the brushes with death provide darkness in the painting on human eyes that are often searching for light. But I still remember the guy who was playing ultimate then, a government worker with his own office. The music jammed while I was doing paperwork not while I was pounding out miles. I wasn't running as much and TWICE tore my suit while bending over because it wasn't quite ready from the college days to the adult days to quite back that ass up. Some changes would have come from aging and
people getting married and having kids and general adulthood but it wouldn't have been this dramatic. I love the new stuff like the Spartan I did this weekend next to my wife but I also know the Spartan came out of the media and an invite out of then. Elaine and I did it together and this was one where we did it all on our own just quietly side by side. There something comforting about it being just to do it with each other (there was also something comforting about finishing at the same time as opposed to last year when we did it separately and she had a faster time). In the Cowboys stadium, maybe, maybe I would have heard of this then too and wanted to do one in a place where it's fun to be an athlete not just a spectator. This is where my father in law most impressed me in giving me Cowboys paraphernalia as a gift once. The day is not likely coming where I'm gracious enough to return Washing Redskins gear. 

Would I have been better to not have the surgery and risk death earlier but a sharper brain longer? I'd be less known by a disease or a forgotten pastime of running. I don't know but somehow whether better or worse, if I'm honest, I'd give it all back just to have more of the writing up to me. There is a distinct irony to that in that the writing of this blog came out of all that but Elaine was unimpressed with me when we first met because she'd read this unedited blog and joked/thought I was just a guy who napped and blogged. I'm not sure I've corrected that impression but she's read other writings from past days where it's a little sharper both from better language days and more editing. Now the editing about my life is from other people sometimes editing what I actually wrote or what's written about me. 

Who'll be reckless, just enough
Who'll get hurt, but who learns how to toughen up
When she's bruised and gets used by a man who can't love
And then she'll get stuck
And be scared of the life that's inside her
Growing stronger each day 'til it finally reminds her
To fight just a little, to bring back the fire in her eyes
That's been gone, but used to be mine

Still, I know I'm not fully gone. The weekend before I did a scavenger hunt. The game changed from when I did it pre brain surgery. It was app based and Elaine and Kiana and Troy were having to figure out a lot more of the clues. But some of the ones they couldn't get because they were in a construction area that was gated off. Somehow after they told me that's why they hadn't gotten it, we might have ended up with them somehow. It was the friend I've had the longest in Austin who was the best man at my wedding to Elaine. When Troy and I met, Kiana wasn't born and I was 25 and Elaine was 15. But now 13 years later, here we were as a team. I used to be competitive in scavenger hunts but the team names were always irreverent but now they reflect the desire to overcome those insecurities and are usually named "Smarter Than We Look." We won the scavenger hunt. Kiana and Elaine and I and Troy are in better shape than physically and perhaps emotionally and spiritually. From them it may well be true that it's mentally too. Three out of four ain't bad (I'll let you decide what the 3 is in reference too, people or qualities).

So yeah, there are tough days but there enough good ones, the majority of them to where I get a clue that the fire in my eyes keeps growing stronger each day and that things may be gone but the beauty of life, it's still very much mine.

Friday, June 14, 2019

Spectator Sport

Shy of when the blog first began a couple of months after my diagnosis, I think this is the longest time I've ever taken to write out my thoughts post medical appointment results. The short version of that is the MRI results were stable. I know that some patients expect that but to me I am always genuinely and pleasantly surprised when that's the result. It's like I'm nervous at every start line. I have not achieved the zen status of people who have passions and possibilities and it doesn't phase them. However, the shock was at the end of the medical appointment when the doctor said, well I'll see you next year. NEXT YEAR! It's literally blowing my mind that my brain cancer is stable enough to where we're moving to annual appointments. I didn't think I'd be here period much less stable enough to where I'd ever hear that.

I guess I should step back to the events between the last blog and this to properly remember this momentous occasion or perhaps it was just the occasion of many moments. The night before the MRI we had a race I've done for 6 or 7 years running. I've placed in the top 10 each time I've done it alone but last year and this year I was running with Kiana. Kiana and Elaine are getting closer to each others speed and so we ended up running it all side by side for almost the entire thing. People kept cheering 'fastest family in town' apparently independently. I was smiling internally and externally with the awareness that like friendships of mine I may be running next to someone but in the end I'm trying to beat you. Kiana would run her fastest 5k out there in 20.11, Elaine her second fastest in 20.14 and I was in between them. But it really was the first time that it was a family affair for 90% of a race. I don't know whether or not that will ever happen again but the picture above is now my screen saver on my phone and my favorite race ever. Perhaps, this is why I live on hope because I know that the line "my favorite race ever" has been written in this blog three times alone this year.  The person who took that picture, Jen, the spectator who caught the unstaged moment was someone who was there long ago helping me find the right shoes when I was still pushing a stroller and telling me to be opening up for love. I believe the sentiment that the arc of the moral universe is long and bends towards justice but I believe it does so kindly. Every once in a while we get lucky and it comes full circle.

The next day would be the MRI and despite the thankfulness of the company the night before, I would go do three separate workouts at 6:30 AM, 9:30 AM, noon and then showered before going to be stuck in a tube. I was exhausted enough to where I slept through both the contrast and non contrast section. But before and after, the spectators of my MRI, the technicians were very kind and remembered all kinds of details about our dialogues before. They asked how marriage was treating me, how running was going. Impressed with their attention to detail, I inquired how long they'd been there and one of the technicians had been in that facility 19 years. She would bring up that it was time for ESPN to come back and do a follow up on how the story keeps getting better. I laughed that off. It's like when people have suggested I write a book, my response has been "He put one foot in front of the other. The end." The best comeback a friend ever said to that was like well you don't need to write a book but be aware that you're nowhere near the end.

From there we went to Kiana's MRI for the memory study. Long ago I gave up taking MRI CD's home, trying to over interpret them but we took home a picture of Kiana's brain. Like all aspects of her life, hers looks better. We'd spend the rest of the weekend being spectators. We went to the NCAA Track and Field Championships where there were several photo finishes, some collegiate records and Kiana getting to see what runners at the highest academic level can do. We went to go see the Austin Civic Orchestra do a concert in the park. That was the prevailing central theme in my mind, that while mere coincidence, while waiting for MRI results I was spectating things more than usual. There were still runs with Elaine, with Kiana, with Kiana and Elaine. Whether active participation or spectating, I believe in shared experiences. But spectating is not my favorite thing. While I have teams I supposedly cheer for in every sport, the only one I'm really a fan of is the Cowboys as I watch their regular season games and every one else I keep track of but only watch if they make the post season. Siting back and watching is difficult for me. I hear about home court advantage due to cheering etc but ultimately I want to be out there being part of the action. Perhaps, this is why we offer thoughts and prayers and good vibes in certain situations, dreaming our most positive energy can be channeled for those we support as spectators.

I ran again the morning of the appointment and both Kiana and Elaine came with me. The doctor commented on my weight loss since marriage (hey when you've got a decade on your wife...). We did some of the standard dexterity and memory tests. My heart rate is still very low. When he said that about annual appointments, I was floored and asked if maybe I'm getting to that age to where I should be seeing a regular doctor. He responded by looking at Elaine and saying, "I didn't start going till my wife said I had to" and asked her if she thought I should go. Even a guy with a medical degree in Neuro oncology realizes the real way the universe works.

I'm still floored. While I've run a lot this week, they've been relatively easy compared to what I do. For my one hard workout all week, I did something I haven't done all year except in races, ran with fast beat music to actually push the tempo with some help. It took me a couple of nights to sleep well because when it was over 2 years without a single month without a medical appointment, 3 years without driving and the statistics that I've outlived the median and that the birthday was improbable I'd achieve, 40 is a little over a year away just keeps flooring me. As I sat late at night, spectating my beautiful wife asleep, and I kept thinking wow, in 2020 if all goes right, I'll only have 1 medical appointment. Then the thought came and I realize no wait that will be true of 2019 too.

I was flooded with emotions of thankfulness and a variety of thoughts from the profound to the silly. One was the fact that a few years ago, once the medical appointments eased up some, I finally got some neglected dental work done thinking well I might need these teeth longer than expected. I was glad I did that because I was now smiling from ear to ear.

People have asked if this doesn't make me worry more; that for them they find the reassurance in being told things are not back or that they're stable more frequently. While I see that perspective, I don't share it. I've told my doctors all along that the less I see them, the more I like them. For better or worse, I only worry about it when the screening is coming up. I talked to Kiana about how I genuinely didn't think I'd be here and I pointed out to her that some of the brain cancer patients she'd met at events and races, one of which I pushed in an adult stroller, one of which beat me at another race had both passed, that I don't know why I'm still here with a complicated disease. Still, I'm not changing the running or the lifestyle that got me here because if it ain't broke don't fix it. There have been suggestions about this documentary that if you take out this dental filling or if you eat this herb that the tumor will disappear. Or if you eat this natural supplement you can stop taking the medication you're on. I appreciate the passion or desire to have life have less side effects but to me the biggest side effect of all this is that I'm still alive and perhaps, I settle too easily but I'll take it.

So now, for at least a year, the images I have more concerned with are the ones that Kiana decides to put up when she opens up a social media account in a few months when it's officially allowed at 13. My biggest worries isn't whether my tumor is growing but how she handles the awkward moments of junior high and growing up. It isn't whether my brain is my friend or my enemy but its every one who thinks of becoming her boyfriend realizing I'm their enemy. I am no longer concerned with what is projected onto a computer screen but what brilliant reflected I'm supposed to say when my wife takes me to see that deep movie that isn't just about cool action heroes. We've both been doing orange theory where it's about raising your heart rate, something they struggle getting with me and my resting heart rate being 42. She made a joke about how they can't get it up on me. I've made jokes about biological issues since this cancer started; I appreciate Elaine and I being able to see those as less relevant than standard biological jokes.

A few friends and I are doing active things Saturday and we're hosting a game night Saturday night. Then, Kiana and I are headed to brunch and then Hamilton Sunday for Father's day. The details of life are wonderful and I guess I'll walk in and out of there singing the same thing I've been reflecting since the MRI results:

I may just live to see life's glories
Because gladly joined the fight
And when my daughters tell some stories
She'll tell some stories of good nights

Thursday, June 6, 2019

The Optimist Who Doesn't Believe In Tomorrow

"Como encontrarse un monumento de Bush en plena Habana
O asegurar que fue Serrat el compositor de Banana
O que subsistan poetas sin ventana
O un optimista que no crea en maƱana

Asi de ilogica es mi vida sin ti
Asi de ironica, asi de estupida
Me siento intruso en mi propia casa
Y no hay quien me explique lo que pasa"

I have an MRI tomorrow. There are cancer patients, warriors, whatever moniker we gravitate towards that call it a simple check up/in. There are others who refer to the process as scanxiety. I long ago decided that if/when this tumor ever grows, I am not doing anymore surgeries or drugs. I have a Do Not Resuscitate  Legal Order as well as a Futile Care one that are solid with Texas laws. So when MRI's come, I'm getting ready to die. I know that sounds morbid but it's true; there's a variety of things I do in the last week or two before imaging that are preparation, all of which there are exactly zero people who know it all, some of which there isn't even one person who knows it.

But there are parts that are well known from ancient ago that I've never fully understood why they are commended. A little over 8 years ago, I put off brain cancer surgery to run a marathon and some thought there was something admirable about that or that it was a weapon in my toolbox. It was simply in the event that surgery didn't go well comforting to know that I'd died trying. I have done 6 competitions and or athletic event in the two weeks pre MRI. Every single one was a win and most were a team victory. My wife, my daughter, one of the friends I called from the hospital and I won a Scavenger Hunt. Kiana and I respectively won on triathlon relays with us doing the 10k part, Elaine and I and a couple of friends won a 4 by 5k trail relay. I rode next to Elaine for the longest bike ride of her life, a fundraiser for cancer where she covered 50 miles after taking a bloody fall that bent her handle bars at mile 11.

These events are sometimes interpreted as the way I fight but that's a myth. Why I run so much more than I do certainly is with doctors having sent me a study that showed that long distance runners have a higher survival rate. No, the fact that my highest concentration of events is right around MRI's isn't about that, it's about coping, hoping about just accepting the reality that if there are somethings that I put off later that MRI may well decide to tell me that later is never. If nothing else, it makes never be more delayed in the intensity it takes to arrive.

My last entry here was about the two weeks notice and I've been remembering the people who I think were expressing care and kindness when right after I had to put my dog down kept asking me when I was getting another dog. It struck me as odd period but the number of people who asked it in the first two weeks was very disconcerting for me. I joked around with our wedding officiant that if I died soon to keep those people away from asking Elaine when she was getting another husband. With a twinkle in his eye, he said all right I'll keep them away from her for two weeks.

I realize that some of my way of living has panned out well. I am still standing here a few years later and I had lunch with a friend this week who is doing his first marathon between my MRI and the results in the exact marathon I recommended in Seattle. I want that image in my head. I've been raising Kiana to be very independent, something I exaggerated in my parenting style presuming I wouldn't be around. Last week she made us dinner on Wednesday, lunch on Thursday and breakfast on Friday. Wanting to leave her with as many resources as possible, I don't owe anyone any money.  I took her out on Tuesday night to her first driving experience around Karts at a race track. I did one on my own, she did a jr one on her own and then we did a double together in pouring rain. That somehow was the biggest heat and we won it. Turns out living like you're dying has it's plus sides. I've not become magically more affectionate or sweet but I feel all emotions with conviction and honesty, sometimes to my detriment, sometimes to my enjoyment, sometimes those same things to others. I apologize, as neccessary, accordingly.

Oddly enough, Kiana was asked to be part of a study about memory and she has her first MRI almost immediately after I do to see how memory develops at the University of Texas. I don't know if it's ironic or appropriate that she's part of a study that is about how the brain develops memory shortly after I am scanned to see if mine is being worn away.

I am not assuming anything will go completely right or wrong tomorrow. Theoretically I suppose it's already gone either way but I've played enough poker hands to know that you play the odds but those don't always pan out but they usually do. Statistically speaking, my odds of making 40 were low and yet I'm about two months from my 39th birthday. I've never fully decided whether I believe that means I've pushed my luck far enough or if luck has been on my side for too long. I know there are people who want to give credence to good vibes or deities about it all and I can respect that but I have zero doubts people better than me have fallen to this disease with less time so I don't have the confidence (arrogance?) to say that it's been a clean decision made in my favor.

We'll see how tomorrow's test results show up on Monday. It will be a long weekend. But a good piece of advice that a friend from Livestrong, Tom, gave me early into this cancer thing was how you get to finish lines. If you look at race pictures, too many of our OCD run crew that want to know our exact pace or time look down at the watch the moment the race is done, a measurement of effort and competition. He suggested to not do that, to look up, to smile, to make that the focus of the race. I heed that advice often in my races, certainly in the most recent ones. So in my most recent race, I never even checked my results just ran hard till the finish line and ran across smiling and defiant. We'll see whether tomorrow is just a split marker or where the final clock is starting but believe you me, I won't be looking down at a watch but looking up well past the finish line.