Monday, August 5, 2019

Emergency Contact

I just got back from a very intense conference at MD Anderson that was entirely for Brain Tumor
patients and their families. It apparently happens every two years which means I could have attended a few times now but it had never gotten on my radar. I say intense because of several reasons. There was emotional overwhelming because some of the people who are big advocates there shared early on how lucky I was still to be alive. There were several patients there some with staples and/or stitches still in their head. There were some brilliant doctors. There were stories, some with little I could relate to outside of the cancer experience and some where parts of our lives seemed like part of the same poem. There were others I thought maybe I could show them poems you read further down the line that even though I was a first time participant, the brain tumor experience felt more like I was alumni.

I suppose I was already prepared for this to be emotionally overwhelming as I was packing I wore my irreverent shirts that came along the cancer journey. I wore the seizure one of when my language functions freeze with the caption "sometimes I stop to think and I forget to start again," my going into brain surgery one (it's not rocket surgery) and my leaving one (gave him a piece of my mind) each day. The tumor hasn't faded but has also stayed stable and turns out the humor coping mechanism still matches. Hope I've always declared is my 4 letter word and the conference was titled "Together in Hope." 

There were stories of cold hard facts about longevity and prognosis, sometimes spelled out but often read between the lines that for a lot of these 120+ different types of tumor there is no known cause and no known cure. There was the advancement in science, some of which I've been privy to as it's developed about the gene mutations that now help predict things better. There was more coverage than I'd ever seen about neuropsychological evaluations and cognitive impairment and function. There was actually a spelled out line by line item of somethings that seem to increase the median survival rate for participants divided into a variety of categories about emotion, diet, exercise, mental and spiritual (I kid you not without knowing them I was doing all but one on the list; the intuitive force is unusually strong with me). There were general presentations, some breakout sessions and one of the ones I picked out was how to read an MRI better; I haven't taken a CD home in years and I don't know if I'm more or less tempted to do so after doing that. I even got to practice drilling into a skull with the tool that was used on me (on a fake skull) and doing brain surgery with a tool though I'm not sure whether or not that was the one they used one me (on a grapefruit)

But invariably my favorite part was the human part; the groups where we sat and traded stories. It's not the first I've sat in groups like that but for a guy who is as obnoxiously chatty as me, I usually sit through and don't say anything. I've got this place where the story has poured out plenty by hiding in public and I get to give it in public places (though that's got a little more polish) but in these circumstances I listen and listen and listen. There were groups for people with children, young adult cancer survivors and gender specific groups. I primarily focused on the mens one but was reticent enough to share to where I actually got nicknamed "the quiet one." Listening to people who also shared jobs lost, marriages broken, someone else who had become a single father, seizure stories, beating the odds stories, clinical trial stories and invariably friends they'd made along the way who were no longer on the path because their tumor grew and took their life just made me more attentive and more quiet. There were people there who genuinely surprised me with how much they valued not dying no matter what the quality of life; I don't share that value but it was good to hear it. 

There was another element that was a focal point for me; I was one of the few people who had come there alone. Most of the guys younger had come with their mother; only one with his wife. Most of the guys around my age or older had come with their wives or significant other. There was a disproportionate number of men in this group. While brain cancer is disproportionately male, it isn't as much as it was at that conference. A far bigger percentage of the women who had come were there on their own. I didn't know what all that meant and I'll let everyone draw their own conclusions but for me I wondered if maybe you know I should have brought one of the meaningful people in my life... I didn't give it much immediate thought as it wasn't correctable at that point but it did stick out. 

But it kept reflecting because another point stuck out. As people told stories organically, they would praise their doctors or medical teams a lot or tell points about their jobs or their circumstances. The reactions would be like "I'm sorry" or "what a great decision/outcome" or "that is a great doctor." It was not intentional but somehow my stories always ended up revolving around the ways people helped me, from walking me back into hospitals, running with me, driving me, flying out to Duke, helping with the medical bills. The response I got to a variety of stories almost word for word was "You have such great friends." The fact that I'd put off brain surgery to run a marathon came up but it's speed did not nor did the fact that I won a marathon pushing a stroller. It was refreshing to have it be where I was just a runner who ran to escape from cancer not a cancer guy who ran. And this, this was made possible my friends. 

Appropriately enough, the conference was about that. I had dinner with a friend on Friday after the first day who has his own brain issues. I was staying and hanging out at a friend's house who had been part of the fundraising efforts from the Ultimate crowd. I got up and ran 20 miles with a friend. Saturday night I had dinner with a relatively new friend from the Wyoming crowd that when someone asked if she was my wife who I'd been talking about pointed out that I was old enough to be her father (she's 23, I'm 38...). 

Still, hanging with her while thinking about the you have such good friends remark made me think about a conversation I overheard while in Wyoming. People were sharing some break up stories that coincided/overlapped/might have contributed to while cancer. One was relatively recent with the person they were breaking up literally moving out while they were backpacking with us. It ended up in a conversation about how at least a couple of them had kept their ex as their emergency contact. I didn't say a word but they explained that in that scenario that would be the person who knew the most. They however genuinely believed that their emergency contact was not and perhaps would never again be a regular part of their life. 

My emergency contacts and executors of my will have always been two friends; part of that is they are literally people with lots of financial information from their degrees (MBA, Ph'D in Math) but somehow I want to believe that their being close but not as close they could have an easier time making objective decisions or respecting my wishes. This was something that was shared at the conference as being clear with people. 

Nonetheless, the thought I left with was that if the story of my life is "you have such good friends," that's a life I'm rather pleased with. Today started with an old friend sending me a picture from exactly 10 years ago when we were playing ultimate in Boulder. I was a few days from 29 then and I'm now a few days from 39 and I like to think I haven't changed much in looks but a good chunk of the guys I played with are still my friends. Every single friend I called from the hospital is still in my life. 

On the better part of 3 hours on the ride home from Houston to Austin when there was cell phone coverage, I spent the vast majority of the ride on phone calls. Before brain surgery, I had gone on this tour over the places I lived and said hello to people from stages in life. I suppose like a tour of life or a funeral, it was the poignant moments and I wanted at least one more. For better or worse since then, the relationships that matter to more now are the consistent ones. Life doesn't always give you too many luxuries; I'm not naive but the friend who I ran 20 miles with we once had a conversation about when have you made enough money and he cited a study about how once you've got the basics covered and enough for a few frills, life satisfaction doesn't actually go up in proportion to huge wages. It stays all but flat but the improvements to life come from how many connections do you have that you can call at 2:00 in the morning when something goes wrong. I am pretty happy with that list but I didn't want to save it till 2 in the morning and spent from 12-3:30 or so just chatting about sports and the weather and... just things good friends talk about and saying thank you for the things from so long ago but also for how we hung out relatively recently. Any of those calls could be emergency contacts but I was glad they were just regular contacts, all people I had seen relatively recently and would see again soon. There's plenty of people I love to party with that I'll have a shot with late in the night but it's the people you could share the silence with, perhaps with a glass to share in the all but quiet, thats an A-frame picture right there no? 

I'll join some friends for a run in the morning but I still may share a glass or two tonight. There's still plenty about my brain tumor that no matter how much hope still lies in front of us, there are lots of answers where we don't even know the question. I don't know or where when I'll have my next emergency but I'll keep trying to never pass up the opportunity for good contact. 


Tuesday, July 30, 2019

The Backcountry With No Backspace

I've not been back long and my damaged brain knows it isn't adequate to describe from where I just returned. Was it an adventure, an escapade, a feat? A few months ago, I had the privilege of signing up for a program called True North Treks, the particular one I'd signed up for was for a week long trip of backpacking in the Wind River Mountains in Wyoming.

The trip started with us arriving, one or two at a time from places from opposite coasts and many places in between to Jackson Hole, Wyoming. As we sat in an airport lobby explaining motivations from remarks about being directed there by a therapist to just a desire to go the wild, the only common thread was that we were young adult cancer survivors (23-39 years old, yes I know I'm pushing it).

From there until the end, unimaginably, unbelievably, all it did was get better. The drive alone from Jackson Hole to the Wind River mountains had a change of scenery where someone said that felt like driving through a variety of states because each of the landscapes every few miles had its own beauty. When arriving at the trailhead, we set up camp and called it a night. With our own two vehicles there and those of another group, the reveal of what was to be was nature flirting with us, where you can just see someone's eyes, not even able to figure out the color when the rest of their internal and external beauty has barely winked at you.

The first day was just climbing and climbing. Theoretically it wasn't that long but when you're wearing the backpack with all of the week's food and haven't worn a backpack in forever and haven't gotten used to the elevation, I appreciated the guide's advice that it's a marathon not a sprint. Somewhere the marathoner in me wanted to correct that we weren't covering 26.2 miles that day but then again I didn't have enough lungs to spare to say it at the time. Still, we hit into a natural stride to where conversations were possible at least in short spurts.

But then again, I get ahed of my myself, each day would start with things that shall we say are not my style. There was yoga, poetry and mindful meditation introduced shortly after we woke up, setting the pattern for what would be each day. I was committed to trying it all honestly, to being flexible (at leas trying to be since well I still can't touch my toes). The counselor had a voice and genuinely believing what she was proclaiming as I sat or did downward dog on my yoga mat, I questioned what exactly I'd signed up for.

But after camp was set up and water was refilled and bleached, there was conversation. There were the simple elements of getting to know any human better, hobbies. There were the transitions into the cancer connections from the simple elements like dates and diagnoses to the complications. One of us was diagnosed at 9 and so cancer was really all she knew and it was her normal. There were comments about body parts and changes, job changes. There were relationships started because of those, some affirmed, some complicated, some broken up. Cancer is an unnatural messing of the system and here we were trying to make sense of it in a natural setting which ironically enough was foreign to most of our daily lives. It kept getting called the back country. Somehow the conversation about relationships moved to online dating and while that is an experience I never encountered, there was a line said that still sticks with me that someone was trying it but they had a commitment to doing it only if they didn't use backspaces. That was the approach I decided to use for the rest of the trip, no trying to erase, less hesitation, more going forward, at least for a week.

It made the thinking in the quiet spaces both easier and harder. It made the yoga poses less complicated but the mindful meditation more complex. The flowers stuck out more, the sunsets and sunrises were more colorful, the constellations and shooting stars more personal. The breaks seemed perfectly timed on the hikes. The persons and the mountains competed with each other for which seemed more grandiose to me. There was my tent mate who at 23 seemed more open to ideas than most people ever achieve. Yet in all that thinking he was always there to help someone across a river, running in if they slipped.  There was the 5th grade teacher who learned that how we tell ourselves stories about our lives can be productive or counter productive who focused on capturing stories with a camera more than most. There was the 6th grade teacher whose ridiculous idealism about human nature is exactly what I hoped my daughter picks up in middle school. There was the person who was still actively in treatment, struggling with tiredness but who instead of doing it alone helped everyone recover by leading stretching exercises.

There were the guides whose zense of humor and quiet balanced each other out as they watched for our safety and caught fish that we could cook on a stick. They would find the roses, the buds and the thorns while telling the jokes and playing the games that seemed to both distract from the pain as they helped us embrace the suck. There was the fitness trainer who worked for a cancer organization that under estimated herself even as she seemed to have energy to go up and down more to get pictures. We were all looking for a little more balance at different levels of self awareness. There was the girl who had genuine opinions about everything but the questions showed an openness to changing her own as much as those of others, other than maybe that her group had a better cook than ours. But unguarded opinions and questions without backspaces was exactly my style on this trip. And there was the friend whose therapist recommended it who kept resenting her therapist less and I kept appreciating her sense of humor more. It was the counselor who could mess with dynamics the most as some of her exercises were alone, others with the group, some still, some in motion, some talking some in silence. At first I thought it was to have cross appeal but I do wonder if it was almost to ensure that someone had some in-congruency to rewrite our oversimplified narratives. I am generally sorry most times when I make anyone feel uncomfortable but very thankful for all the ways this trip messed with me.

There were snowballs and cold water plunges, napping on rocks, bathroom au-natural. There was bonding over mosquito face masks, the net squad. I genuinely don't remember the insects but I remember the way some looked more like darth vaders and others like someone about to break into a store; surely one or the other scared the bugs away. There was beauty that I would call majestic but nothing other than the wind river's royalty could have made a palace with that much splendor. The week despite tough hikes and short nights since we stayed up star gazing everynight was flying by. There was genuine bonding with very early on the discussing already starting about when we were all going to get together again and another about which matching tattoos we were all going to get. I don't know whether or those will occur but it's shouting at the mountains hoping that somewhere down the road, a little further away we can still catch their echoes of us and of each other. We didn't speak in particularly loud tones out there but the mountains, water and wind will keep whispering back.

On one of the hikes, I found a horseshoe on the side of the trail. The day before my roommate had found some rusty pliers. Between the two, I made it a little safer. Everyone kept telling me that it was lucky with someone sharing that depended on how you hung it up. But I keep horseshoes as one of my yard games but it helped me redefine that maybe what it has in common with a grenade is that you don't quite get its full meaning till you see where it can be utilized. Just to be close to that beauty with that speed and power is something I will never fully comprehend but at least we had similar paths, that horse and I. We both left something we thought we'd come attached to out there and perhaps it made our path down both easier and harder.

On the way out, several of us tried to describe it and we all felt inadequate. Even as I write this, I am tempted to scrub it and tell you to go take it in but how could it compare when we had such great company? I mean we burst out into a group hugs and went around a circle sharing stories about each other to close it all up. I am back into the rhythm but still trying to share it here and doing some fundraising so other people can so in the future.

I miss the backcountry and I'd not take a single backspace key to the whole experience. I haven't had spatial orientation since brain surgery but somehow the sun and waterline and mountains were clear enough to where GPS was unnecessary perhaps why this is called True North Treks. I've lost some language skills from this but it didn't matter out there because it would leave anyone speechless. I've lost some memory skills but I have no confessions on what I don't remember. It doesn't matter that some of life might not have held in my brain because that scenery was one of those things that if you think about too much, your mind may get overwhelmed and so you absorb it and just let it sit in your heart and soul.

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.

Sunday, May 26, 2019

Two Weeks Notice

While today's title is two weeks notice, I went the better part of two months without nothing in here. It's not that life has been boring or even extra busy but for the most part it's been irrelevant to the brain cancer stuff. That, that is a good thing in my book.

There has been the most contested and contentious election I've ever been a candidate in the pursuit and arrival of the ARC presidency. It's an odd stage and age of my life today because it seems in choice, big and small in democracy the people we disagree with we decide they are harmful not just wrong, almost exaggerating the purpose of a small non profit running group with petty shots taken not just at me but my wife and daughter. It's bizarre. Still, we've started with a great new board and I believe in our future.

It was disconcerting enough to where I even took a break from running races and two weeks of the easiest running I'd done in years, some of the positive association at least slightly dislodged. While I did a race almost every weekend in February, March and April, I had not done a single one in May. I mean I concluded April running through mud but the mudslinging was a little harder to stomach. Two people who were elected resigning before even a day of service was also disconcerting.

Nonetheless, as of Friday, I got the reminder that my next MRI is two weeks away. I've gotten to go about a year without staying in that machine, without a proper cancer picture. If you think social media gifs can be disconcerting or that holding still for old fashioned cameras was annoying, this always takes it to a whole other level. It may tell you something just how much running is my therapy because I'm already at two athletic since Friday and will do 4 more before the MRI, the usual behavioral pattern right before that 'screen capture.'

But the pattern of how I handled being disturbed is now going to be disturbed itself. For the first time in several years just due to the weekend, I will not be receiving nor taking the MRI on the 8th of a month. Call it silly to be that superstitious or even a little bit stitious, but it has me nervous. A random headache, the dehydrated runs due to rising Texas heat make me wonder if it's just a tumor growing. It'd be dishonest to say I'm entirely unworried that I won't be apologizing to Elaine that I couldn't even do one full year of marital bliss without cancer growth. I always live off hope but I bet on statistics; it's why I win poker as frequently as I do including last night.

Stil, I am taking it all in stride and have made sure to run with friends and family in the last week. Some people dance to the beat of their own drum but I'll dance no matter who the drummer is so we've caught a variety of music lately even taking Kiana to her first country show and her first comedy show recently. It's a fair question whether questionable lines delivered as singing or delivered as comedy made me question my value as a parent in what I expose her to first.

Still, I've been running tired a bit more but running trail more. Elaine and I were in California for a wedding exactly 9 months to the date of our own. We ran on a trail in the redwoods and on the northern California beaches. I've always said northern California is where God lives and I'm glad he lets me visit once in a while. It rained some of the time we were there and we utilized that time for wine tasting so turns out there is still some turning water into wine near the divine.

But in those runs and in local trail runs some soccer instincts have kicked it when I tripped where I didn't do the natural thing of sticking out my hands or rolling into my shoulder but rather keeping a vertical horizontal line to keep moving while falling and then keep running. I know it's silly but when it happens 3 times in a week's time I've genuinely wondered if somewhere the damaged memory is recessing to a time and instincts of a sport I haven't played in so long. The feared emotions that upcoming MRI's bring are creative and absurd. It rained during that wedding but hey love is rain or shine whether or not the sun comes out.

So I suppose that's why I write today, to give my two weeks resignation notice. In two weeks, I'll be sitting there enduring a long weekend of waiting between an MRI Friday and results Monday. But while resignation can mean quitting, I don't have that in mean. It can also mean accepting something undesirable but inevitable. Death falls in that category and so does this MRI but the two may not be related, not now, perhaps not ever. Groucho Marx once joked, "Please accept my resignation. I don't care to belong to any club that will accept me as a member." I'll join him in that and utilize the next two weeks for upbeat energy and constant motion. If death is coming anytime soon, it will be more along the lines of Dickinson that "Because I could not stop for death, it kindly stopped for me." But I hope that neither of us is stopping for the other anytime soon.

Rather, I want to believe that in the next two weeks as Kiana is out of school already and passed 6th grade with straight A's that the focus will be that she's already cooked and asked to go the library. It will be that one of those events was all the family and a friend winning a race yesterday followed by a meal and dessert. We race against each other as part of different relay teams tomorrow. Next weekend Elaine and I do a cancer ride side by side. We're going to another comedy show on Thursday. All 3 of us and the new ARC board will all be doing the Moonlight Margarita Run the day before the MRI. We'll do art projects and video games and board games and other ways to say I love you and this is a method to show I enjoy life better with your company. So yes, there is a long weekend between an MRI and it's result I dare dream that with these friends and loved ones, neither the two weeks nor the weekend in between, I won't be bothered and maybe won't even notice.

Monday, April 15, 2019

The Name of the Game

I've been playing sports for so long that when it's time for anything important to happen, I almost always declare it's game time. That's been said before speeches, tests, interviews, and almost every race. For the first time ever in my life, this past Saturday it was 100% correct at a race. Elaine, Kiana and I were signed up for the Game. It's a race that has a 4.167 miles of an out and back on trail where you leave ever hour on the hour. The reason for the random distance is that if you last 24 hours it would be exactly 100 miles.

Before this, the longest Kiana had ever run in one day was 13 miles, the longest she'd ever race continously was 10. Before this, the longest Elaine and I had ever done continuously (and that's arguable due to the obstacles) was a 50k Spartan ultra. The longest I had ever run in one event, a Ragnar Ultra was 36 but that had multiple hour breaks between the 3 times I went out there. Kiana had committed to doing at least 4 originally but then they announced whoever did 5 got a cap and she started saying 5. Elaine said she wanted to do 8 (pretty good number!) and get 33.3 and get her highest single day mileage. I made it my goal to fail out there because I couldn't get back in an hour not because I wouldn't start a round, the way almost everyone completes it. I wanted to fail on the course, not at the start line, get my first DNF (did not finish).

The race was a little ways out for a 7 Am start so it was a 5 am alarm. My parents had come into town in case I was dumb enough to last well past Kiana's bedtime, they would take her home. In simple honesty, I thought I would last 50 to 60 miles, not so much because of the distance but because of the pausing. I've played sports and it was the long breaks or bye between rounds where I always hurt the most and I thought those would accumulate for me.

Round 1 was nice and steady, there had been rain the night before but it was all still pretty solid but damp. Round 2 it started pouring like crazy enough to where I thought, we better be getting some doggone good May flowers from these April showers. Moments after I warned Kiana to be careful, I took a serious fall. It was primarily reflex from sticking my arm out and my shoulder tweaking out of place. It kept popping regularly, enough to where I had the medic tape it since it was a bit of a nuisance. Turns out your arms are engaged during running. Round 4 was a prim, there was a prize for whoever came in first. I didn't care about the prize and multiple had said specifically that if you wanted to last a while you should ignore those. But as everyone knows, I'm not competitive at all so I took off fast. There was a friend right behind me for a while and so I didn't give up off the throttle until a little after halfway where I realized I had a solid margin on him. I did that round in 34 minutes, could have done it a few seconds faster but just having fun with the game, I crawled in the last 20 yards, exhausted from smiling.  Round 5 had more rain and hail and thunder and lightning. It had a 30 minute delay so more sitting around. Kiana and I were heading back where she had pushed herself to get her cap and she was trying to decide whether or not to take on a 6th. She said well I'll definitely do a 6th to get to 25 but maybe I'll do what you're doing and just run till I fail a round. Like the great father that I am, I said well I'll keep running next to you unless it's too close then I'll hurry back to not get DQ'ed. I did from that moment on though start running behind her to make sure she was keeping her own pace. After we earned our caps, Kiana proudly took hers. Elaine and I had brought our own so we brought them to my mom and dad who had brought Mexican cokes, Chips and guac, towels, more socks. They made us and them look good.

Round 6 Kiana was slowing down but still nowhere near dq time. There were poker chips you had to pick up at the turn around point to turn in with questions, some simple like chocolate or vanilla. Others were a little more philosophical, like hardest thing you've ever done, biggest dream. We did that last one with all 3 of us together and chatted it up. Kiana on the way out was thinking maybe one more but on the way back decided 25 miles was a nice round number plus they were making pizza at the start. I got both honest criticism and honest praise of the quality of my parenting about letting her run that long.

Round 7 and 8 were Elaine's last two and she was committed to finishing what she started. We ran them side by side and chatted some more about the weather and the mud. When she finished her last one, she said she would get changed while I was out on number 9 but they announced that it was going to be a prim. Several guys said they weren't just going to let me have it but only one really took off with me. I was in the lead the whole time and I never look back no matter how nervous or tired I am because anytime anyone has ever looked back at me at a race, they just became my biggest cheerleader. Still, when I passed my family the first time, they said you have a 30 second lead. The second time they said you have a 23 second lead, the 3rd time they said you have a 15 second lead. He was making up space. There was only one long section or gravel dry road around mile 3 and I put my head down to beat him. It would be the fastest round of the day, 32 minutes, this time moon walking in the finish.

The next round I'd take it very very slow just to let some recovery build up but I started noticing the other runners more. The guy consistently in the lead was keeping a very steady pace. Most people were. I was just running by feel and found that changing up speed helped the legs. All of a sudden a strong wind picked up and the guy who runs without a shirt in 30 degree weather was getting cold. So I started putting on a shirt and jacket in between rounds but then just started running with one. I was somehow both cold and continuously sweating. After 10 rounds, I said well only a couple of more and I'll get to the minimum I'd hoped for, 50 miles. Some people were saying, one round at a time but each time I was getting near the finish I'd think two or three ahead. When I got to 50, I thought well the kid born 8/8/80 is at 80km but I can surely get to 100 km and 13 loops. When I got to 12 loops, I thought well I definitely hope I don't fall apart at 13 that's bad luck. When I got to 13, I'm like well if I get to 16 I'll have gone twice as long as Elaine. Every once in a while I gotta last longer than her. While you can read the double entendre there, our first trail race together she did 30k while I did 10k and there's been other races where she's been doing the longer distance because she has more tolerance for loops than me (speaking of double entendres, see she can handle monotony).

When I got to 16 loops, I thought well let's get to 18, I'll be a legal runner on this game. At that point, I thought well once I get to 21 I'll drink something alcoholic just to make a point. I was actually feeling pretty good at 18 and with just two hundred yards out on a sharp turn, I tweaked a knee. I walked in the last couple hundred yards out. I said to Elaine I think this round may be where it comes apart, this is swelling fast and I don't know what it is. Earlier in the day when I'd fallen on my shoulder, two rounds in, I was sharp enough to say tape it. After some sleep, I wonder why didn't I think of tape or icy hot but I was barely thinking much less thinking straight. On loop 19, I got to the turn around point at about 29 minutes. Now in almost every round I actually did the second half faster than the first but I was struggling. I decided to ignore my watch and just finish that 19th loop but it would be too late. Still with only about a quarter mile to go, a runner passed me clearly hustling to make the cut and I followed suit but still couldn't run and so sped walk ran in pain till I got to the start line with about a minute to spare. By this time, it was night time and we'd been running with lights for quite a while. A couple of friends of those left said they could tell which one was me because the light was bouncing very sporadically, my stepping had become uneven. Still, I was there with time to start and start I did. I took off running but it didn't last long. I'd get a little overhalf way before the full hour passed. Elaine had come to try to talk to me but I told her to leave me alone as pacing was against the rules. When it was done, I went and apologized to the race director my friend Jason for not lasting longer. He hugged me and said no apologies needed. We got in the car and while the drive home was supposedly 45 minutes, I blinked and when I opened my eyes, Elaine said we were one block away.

A DNF is a DNF. There is no way I'll be proud of failing well ever. Could I have figured out a better way to put the pain away? Maybe. It was cold out there and I was literally physically shaking between rounds. Maybe I should have accounted for that and brought a long sleeve shirt. Could I have better planned out nutrition? Maybe. The winner I would learn after I woke up went 23 rounds. Somewhere in the night I'd wondered if I could hit the 24 hour mark and run a 100 miles but at least that night no one did.

Still, it was more than double the distance I've ever done in a single day. This race has no finisher's medal since only one is the finisher. Still, somewhere whether the failure was mental or physical I'll never fully know. I'm glad Kiana, Elaine and I got to be players in this game I love. I've had many failures in my life but this is the one I'm most proud of.

Friday, March 15, 2019

Good Grief

I am sad. I am very very sad. I know tons of people and being in the cancer community, I deal with death too much but the last time I was this sad was when my great grandpa passed away when I was in 7th grade. I know that may seem over the top since well, it was a dog versus people and let's be clear people as a group outrank dogs as a group but she was always here. It's against my religion to have bad days and I rarely sin and I haven't committed at least that sin once this week since Puppy's passing. 

But there have been moments, unpredictable some and some all but expected. When I finish my cereal and remember that I can't go put down the leftover milk for puppy to lick up that I tear up. When there's a little bit of salmon left and I tell Kiana and Elaine that we need to pack it up or finish it because it's expensive just to not bawl on that I can't put it in puppy's bowl. Puppy was never a loud dog, rarely barked but I miss the clicking of her too long nails in the wood and tile floors, the flapping open of the dog door and the magnets getting into place. I put away my laundry usually pretty fast since I fold it on the floor while watching TV but this week I let it sit in the middle of the living room for longer and took the coffee table purposely to where her food and bed used to be to make that space not look so damn empty. 

Speaking of damned, I don't know what to do with words of comfort people offer. I say thank you every time and don't argue. I mean even the vet's pamphlet talked about some mythical rainbow bridge. I've gotten the all dogs go to heaven a few times. There was the suggestion of a tattoo because of how much I loved her. There was even one person who shared about dog cloning things. I get it, we all deal with sadness in different coping mechanisms. 

I don't know what happens after humans or dogs die. I wonder if it's something like the movie from the invention of lying where heaven is just something we made up once to find comfort in. I have a degree in religion so I'm aware of the different portrayals/perception of the after life in both the good and bad. Even with humor as my usual coping mechanism, the only joke I've been able to make about it all was in response to "all dogs go to heaven" with a lame, "That can't be true about puppy cause they say dogs resemble their owners." I have enough of a sense of justice to where I understand the desire for people to get their just deserves when they've gotten away with much of life and I've received enough grace to know too many people like me, get a far lifer kind than they deserve here and dream up that maybe, just maybe the Universe forgives those willing to receive it in some way Forever. 


I've heard intriguing stories about what people do with pet and human remains this week. We were very very practical about puppy's remains, not an ounce of romantic effort was put into them. I mean I'm the guy who wants to be cremated and flushed down the toilet. But don't think I did it so quickly. I almost got remains that I thought about holding onto and taking her back to the Marshall Islands in the style of Lindo y Querido. Or perhaps just spreading them in some of the best places we took our walks. But in the end we were strictly pragmatic. (I mentioned the toilet seat that a friend made for when my time comes to the vet after it was all done. Surprisingly or perhaps un-surprisingly since she regularly conducts euthanasia, she asked to see it.)

Let me be clear; this blog never has been, never will be a place for me to give advice (or take any thank you). It's just a place to describe the memories of this journey and if brain cancer takes a common path, life is kind enough to give me that luxury to read this story in my own words, to hear the story the way I remembered it at the time, with only immediate coloring in retro activeness not the one that we do with years past.

But how I grieved, Elaine and I have cleaned out more of our house during the recent past than ever. Shoes, tshirts, medals all types of things that were just sitting in drawers were taken to goodwill or trashed. I've heard the give me joy pattern going around and I respect it but to me it was simply is it used and is it useful and with very few exceptions if it didn't meet that criterion, it was time for it to go. I have great joy in my even damaged memory but I hope that somewhere until very near my final end, amazing joy on earth is always more forward than backward.

I also have been deleting hundreds of people on social media. I got my twitter and instagram down to double digits. On facebook I've been working on it for a while. The media and speeches had people follow my day to day. I never did know quite what to do with it simply running with it (pun intended) with the old idea that to whom much is given much is expected. I hope I've kept up with expectations but it's been over 8 years since I did my first interview about my cancer experiences with lots more in the 6 years since I won a marathon. I still have speeches in recent past and future but I think on my social media I'm just going to treat it like an old fashioned way to say hi in between chances to actually catch up with people. If that's the only way we can catch up, no real interaction in text, or calls or chat or phone calls, I'll pass. I want to know people better, not just mine and their short projected ideas dancing. I got along great with puppy for 15 years and we never once texted.

I'm not denying my grief. The tear ducts are in the system for a reason.  In cleaning out my closet and puppy's gear and boxes of this and that, I dare to dream that open spaces, yes they remind me of what's missing and make a few or many tears burst here and there. But I hope, and hope is my 4 letter word, that leaving space open clears some room for those tears to give empty soil some new room to grow.

Monday, March 11, 2019

Dreams Were Made and Used, Not Wasted



Theoretically this blog is about brain cancer changes but today I emotionally deviate to what has been the most consistent part of the story, my dog. With running events, I always say its like lights and sound, if we do our job we should go unnoticed. In our life story, we sometimes neglect other people but that's almost always entirely wrong, their job is not to highlight ours. Relationships are a dance, a back and forth. With pets, they're just animals right, just furry fuzzy fun critters to keep us company. I mean who overdoes things like that or gets too emotionally involved? A guy as stoic as me certainly would not.

But the truth is that I had to put my dog down yesterday. She was just past 15, by all standards well above average life span at her quinceanera. She had some rough moments in the last few months from something they literally refer to as old dog syndrome back in October to being attacked by another dog in November to where her heart has been giving out for the last couple of months. I don't know much about heart disease but apparently it was causing it to grow some, turns out the grinch and hers stories don't line up.

Still, I digress. Death is so rarely the most important part of our story no matter how dramatic or emotional we latch on. She was a beach dog came from when I was volunteering as a high school teacher in the Marshall Islands at age 23. We were both born poor in the third world walking the streets. From a young age till the very end this dog had brains and would look both ways before crossing the street. She was part of the litter of a stray that lived in the building across from my apartment and she'd come up to my place to say hi. The most common meal in the Marshall Islands is chicken and rice and fish and rice. To get rid of the dog, I'd throw the left over bones from my front door to get her away. She'd chase them down and be back for more regularly. My intent of getting that puppy out of there was not working. So eventually, I took her in and since my creativity knows no bounds her moniker was "Puppy." Her name tag would say only that for a few years with the"Leon" part to be added when she was well past the puppy stage. I'll fully grant that sometimes I'm slow to recognize family.

When it was time for me to leave the South Pacific, there were several teachers that were attached to campus or neighborhood dogs. The rest of them took the rational approach and realized these were strays and said goodbye. For me, I took the dog with me. At the time, as far as I could find record of, no one had ever taken a Marshallese dog back to the states so I had to get some customs laws figured out. I booked her on two separate flights, one from Majuro to Hawaii and the other from Hawaii to Texas. That made it more expensive but if I had done it all on once she would have had to been quarantined for a few months and I wasn't ready to bring her to the land of the free to start in captivity. Like me, she arrived in the US illegally through no choice of her own. I've wondered for both myself and her if we'd gotten to stay in the 3rd world how different our life would have been, simpler perhaps, just strays on rougher streets living simpler lives.

She was around one when all that happened and when we first arrived, after immunizations and vet appointments and weather changes and the beach disappearing, she pretty much wouldn't leave my side. The entire world had changed except me.

Through the years she kept up the desire for freedom, bolting out everytime I had groceries or was mowing the lawn. Yet not once did I have to go look for her, she always came home on her own. She was wanting to stretch her legs, not runaway. I rented an apartment because it came with a small backyard. She regularly dug holes underneath in youth; I was annoyed and grateful my mom didn't know about the times I snuck out the window or have to do repairs (that's obviously just an exaggeration mom). There was never a time where she'd had to have dog food in the Marshall Islands, they don't have that so she regularly tried to sneak this 'human food' which to her was just food. It's still one of my funniest memories finding her having destroyed the oatmeal container and her head stuck in it.

She'd not even been here two years, so just shy of 3, when a child was coming into my life and I bought a house cause the apartment was too small. I was 26 and didn't know anything about real estate, just wanted my daughter to have a room of her own right from birth. Still, one of the big things that jumped at me from the home I purchased was that it had a doggy door. When someone pointed out that I could have put one in, I didn't have a logical answer.

She would run with me in both of our younger ages. Back then I was usually running 3-5 miles most of the time and she'd go with me and look back during all these runs as if she were saying "Is that all you got?". If you think the guy who walks out of ambulances and put off brain surgery to run a marathon had her on a leash during all that, I assure you it was rarely true.

She aged well and even as I amped my mileage she would too. She did a training run of 13.1 miles with me. I never got her a medal. Unlike me, an irrational creature that want impractical things for external recognition, she never cared. She got a lot more white hair even before I started to get any gray ones but it would be a while before she'd slow down. She would leap super high for treats and even until a few months ago she still would remember and step as high as she could. The more she liked the treat, the higher she jumped. She was less than 40 pounds but a time or two with the right leap and enthusiasm and tile floor, she managed to knock me over. She never asked how I was after that, would just take the treat and go on her merry way. Perhaps because she'd been a stray anytime she got anything super special she'd take it out side and eat it where she was hard to reach.

Time comes for us all and Texas summers got hot so after a few years she didn't care about going on runs and just settled for walks but those were long with many going a few miles at a decent pace. She never seemed to want to turn around and it was usually my time constraints that got us to return. Puppy never seemed to like sitting still. They say dogs resemble their owners and we resemble that remark. Up and down steep climbs, across wet streams, hey if I was going she was going.

She never cared for 'dog toys' or things like chasing a frisbee. She'd look at me like why are you throwing random things that aren't food. Even when I tried to throw the ones that had food in them, she knew she'd won the game as I was sitting there struggling to figure out how to put peanut butter in one and she was licking from the jar I'd put down on the floor (yep, not at all at once but she got the rest of that jar and we never did a dog treat trick again).

She wasn't a dog that reacted to other dogs or people, didn't bark much. She was just home when she was with us whether that was outside or inside but when she needed a break she took one and well there's a reason there's inlaid bricks across every single section of my fence cause otherwise she'd stage breakouts to return later. There were neighbors who were annoyed with it because of her safety but eventually they realized neither they nor I could catch her when she wanted to take herself on a walk and again she looked both ways before crossing the street.

She put up with a leash when she had to which was gigantically when Kiana was involved so that I could be a proper law abiding dad in her younger age. She never tugged just to go faster so when she did jet to chase that squirrel or two she usually was already out of your hand by the time you realized it. But you also knew she was always coming back.

Puppy was the definition of home. For about a month or so, she will lead in the category of who I shared a roof with the longest with us buying this house a month before Kiana was born. She will for at least a few more years be who I shared all roofs with. I moved out of my parents house shortly after turning 14 and Puppy and I shared 4 roofs in 3 cities and two countries but she was my companion for a little over 15 years. When she turned 14 last year, she was fading much and I wondered how much time she had left but as I gave her a few special treats and I was recently engaged, I looked up at my fiancee and said see I hold onto my bitches. I won't tell you her full reaction but it wasn't a warm hug ;).  Kiana will pass her in a few years and I trust and hope Elaine will pass them both in due time but I'm glad we all got it together. Still, with Puppy, I knew her from birth till death and shared a home with her that entire time. I'm highly skeptical anything like that will ever occur again.

In stories, we focus on the 'main' character too much and I think we often miss the more accurate portrayals. There are only two books I've read more than once and only two movies that I've watched more than once and only one literature piece that has a decoration up in my house, a sword. That overlap is in Lord of the Rings. It has the big monsters and this hero and that hero but my favorite hobbit one was always Sam not Bilbo and in the end he says "I can't carry the ring but I can carry you." Puppy couldn't take cancer away from me or a seizure or becoming a single dad or the biggest financial mess of my life or any or all the ups and downs. There may be few confessions that I would have a hard time acknowledging that in the midst of all that transition, I almost thought giving away Puppy was an option to be financially practical. The friend who talked me out of it, the guy who I've seen many world wonders with and who would be the best man at my wedding, Troy, said if I was really gonna do that, he would take her in. I'm glad we stuck together because there were days I came home just to her and our walks and staring at each other was a difference maker. I never talked to her, which surprised many friends both pet owners and non-pet owners but dogs don't understand speech. I had noises and signals and we definitely communicated but it was a language we could both speak and hear. She carried me and frankly she helped me understand why I've seen so many homeless people keep dogs because I assure you if I had ever gotten there, I would have been a lot more at home with puppy and no roof than at a shelter without her.

She got me to continue home and gave me approval of marrying Elaine by being the ring bearer at our wedding. It wasn't the best pictures when she came up and I gave her a treat as I got the rings from her collar so none of those have ever been shared but it showed how she felt surrounded by a couple of hundred people. Her tail was wagging.

The last few months were tough. Elaine and I came home one day to her barely able to get up due to a 'old dog syndrome.' She would still eat but only tiny portions hand fed and Kiana would slice them up and spend lots of time doing it. She had just healed form that when another dog attacked her and she required two surgeries. After that she was hesitant to take walks but eventually got back to it (it might have helped that she got 'human food' at the end of those). Still, that may not have been the best approach as it became the opposite it had always been where she was in a bigger hurry on the way home rather than on the way out.

As recently as the Superbowl she was still stealing chicken wings from people who put them down. She started to lose her appetite in the last month, stopping to eat all dog food and most dog treats and even pass up chicken. The early February appointment at the vet had shown heart damage but still stability. At her appointment a week ago, the vet said her heart was almost twice as big and the videos I shower her of the episodes she was having were as alarming to her as they had been to me. We'd noticed her stomach growing and apparently the inefficient heart beat was causing fluid build up and she had almost a liter of that in her stomach. The vet said if it was her dog she'd put her down within 24 hours. I bawled for half an hour, more than I've cried continuously since elementary school. She asked if I needed more time to make the decision and I said no, the decision was almost instantaneous but it would be a few days. She gave me meds to make things for up to a week. I talked to Elaine and Kiana asked them if they wanted to be there. They both said they did. The vet said her office actually does it for free but we aren't the dying in a facility type and I'd learned about Lap of Love who does it at home and we scheduled it for Sunday night.

Did I second guess it internally, a thousand or more times but never seriously. Even cooking her the foods she'd tried to steal off our plates she was eating very little. She didn't want to walk much and was mostly just sleeping and still had a couple of the episodes. There were logical statements made to me when I'd question why this was necessary when she 'looked so tough' during some moments like 'well dogs don't aren't meant to show weakness.' While during our soft moments she had questioned whether or not I was really a Lion descendant and I questioned whether or not she was a wolf descendent, we'd dropped all pretense and just laid next to each other eating peanut butter and chocolate chip cookies. A friend tried to reassure me with the statement of better a week too early than a day too late. It was logical and meant well and still painful to absorb. In the end my own emotional process was spent listening to a cover from Les Mis and while I dreamed we could spend more years together but there are dreams that cannot be and there are storms we cannot weather. I found comfort reminding myself that all puppy and I had done in youth and old age were dreams that were made and used, none wasted.

Her last few days were glorious weather with us going on walks, one the longest one she'd done in over a month, albeit very very slowly. The last thing we did before was all go on a walk together over rocky uncomfortable terrain. We all saw her take one last uncomfortable step over a steep rock about a block from home but with conviction. She had no leash on her last walk.

I had assumed we'd do this on her bed but puppy's most oft visited spot was on my deck over the stairs staring into the open space. Even as she'd become less physically capable, she would still stare at where we used to walk. As soon as the vet came in, she headed out there and the vet said it was up to us where to do this. I stared into her eyes and petted her for a bit from the front and Elaine and Kiana were on her side. All week long I said we'd save the crying for afterwards since Puppy had comforted us all in different times and well this one, this one thing was one she should not have to comfort us. Because her health issues were causing excess fluids she'd been having more water marks in her eyes which I would clean up frequently to avoid the salt build up. In over 15 years of life, I'd never once seen one come out. As I was petting her one last time, one came out of her eye like a single tear drop. I responded with a few of my own as the vet put something in her to put her to sleep. She would stay standing for a bit with her back legs collapsing and then her front ones buckling but she resisted as long as she could till she collapsed in my lap. Then a few moments later was the final formula and she died there with all of us. Elaine and Kiana went running immediately afterwards as I figured I should deal with the immediate remains as they'd warned me that her eyes would likely reopen and she'd have accidents to clean up off the floor. None of that occurred, she never opened her eyes again and had no accident. Even in the end Puppy kept her shit together.

We spent time cleaning up. Her food, treats, shampoo etc were given to someone who could use it for their dog. The rest was donated to an animal shelter this morning. I'm not super sentimental about things so Elaine and I kept one thing, the collar she wore at our wedding and Kiana kept her final paw print. We cried into each others arms many times and will again. I have no shame in my tears; there's a reason they are built into the system.

I could tell you the little things that have triggered tears yesterday and today but those are less important than the moments that brought smiles and laughter and company over a decade and a half. I lost some family member but the paths we shared I would not trade for anything. In the end it was her heart giving out that made this necessary and it was likely because she gave too much of it to me. While it feels cracked today, somehow, Puppy’s presence over such a huge portion of my life is a reason my heart is still intact.