Thursday, July 5, 2018

Broken and Lost Hope

It takes a cursory look at my house to realize I love symbols, ideas. There's a print of an Escher lithograph I love of hands drawing each other onto the paper, one of my favorite pieces of art ever, reflecting an idea I hold: that in many ways, we create the world that creates us. There are two wdays that represent everywhere I've ever been, shot glasses and a gigantic map on the guest room with spots on it (thought it may tell you something about my appreciation of symbols that when Elaine moved in, the only shot glasses that stayed up there were ones where I had a trip with at least one if not both of them). We have a spot in our kitchen where the latest bib of the race we did goes up until the next one. I've worn a band consistently on my wrist that says Livestrong since I got cancer (though I will point out it also has a little metal piece of emergency contact info so it's also got a practical application).

But while I love Emerson, there's at least one idea of his idea I hope never takes over my life which is that we are symbols and inhabit them. I proposed with a ring made out of the same color and material as the Livestrong band (eventually upgraded to a metal one that also said hope and had one of those diamond stone things). Elaine wore the one I proposed with when we did our next Spartan which was extra muddy. It came off somewhere in the mudpits and she told me at the finish line. She genuinely looked sad. A while back someone gave me a handmade vase that had been a centerpiece of my table for a while quoting Emily Dickinson's poem, "hope is the thing with feathers." Kiana recently broke it while cleaning the table and cried immediately and apologized profusely. In both scenarios, perhaps not sensitively enough or perhaps putting in perspectives, I hugged each of them and said don't worry about it, it's just stuff. The truth is both of those things were special and even if sort of replacable by circumstance, really one of a kind but while I wish they weren't lost or broken, I shrugged it off as I hugged them because I knew, I KNEW that what mattered was neither lost nor broken, the Hope that they symbolized. I'm still engaged to that non typical girl, I'm still raising that special little girl whose hope keeps getting more feathers.

And so I'm a practical guy, never wanting to let the perfect get in the way of the good. We ordered practical plastic wedding bands, Elaine's is a lavender one that has hope on it. Mine is a Spartan Blue One (the color of their Super which is the longest I've ever covered a Spartan with having done the elite on my own and then repeating it again with Elaine, shortly after that was where the idea of proposing at one came up). They will be part of the ceremony but I assure you with this ring I thee wed or anything like that won't be part of the ceremony. I'm marrying her with my conviction, with my heart, with my damaged brain and the ring even though both have a sideways 8 infinity, could not capture that. It is just a nod. There will be several of those at the wedding, some of which all, some of which few, and a couple almost no one will catch and why not, inside jokes are fun once in a while. Kiana will be part of it... Everyone thought I should wear running shoes and I thought that was silly with a suit till we came up with the idea that Kiana could paint on them. We've been practicing and those shoes will be wearing. Speaking of nods that few people will get, she will be using the exact paint of the colors we chose for the accent walls and the front door of our house... and like her first shoes, they will be very meaningful and when they are no longer useful, we'll throw them away. Many people I love and that love me have criticized this approach to life (and look this is just how I choose to live; I'm not preaching to anyone to follow my style) but it turns out that for me if I don't distract myself by the symbols, I can focus on hugging and loving who or what they're supposed to represent. When you have a damaged memory, that sure helps.

We've been watching the World Cup and Mexico got eliminated Monday so I made sure to wear my
jersey Tuesday to show I support them when things are up or down (but seriously guys we're at 6 world cups where we advance to the round of 16 and no further, you're such a tease. I didn't even last with Clooney Tunes that long before I got further). Speaking of, we're working on the wedding. I would love to tell you that there are zero obligational invites on that wedding list but there are very very few. There was even a thousand dollar offer to invite someone who really hasn't talked to me since before I met Elaine. The smartest thing I ever said was you have to work on the relationships you want to keep and why throw the party where you're going to have the most friends and families to say hi to people who pretty much all they ever do is say hi to you. We've told people no about plus ones who weren't married or in a serious relationship or kids because its' a small venue but mostly because we want to hang out with people we know on our wedding. It's a party and while I'm not shy and I've made many strangers into friends at parties, this one I just want to see friends and family and thank them and God that we aren't strangers. When I pointed out we hadn't talked in so long for the $1000 offer (I said no in case that wasn't clear), their retort was that quinceaneras, weddings and funerals are for catching up and then you get back to real life. Maybe that was the way it was once upon a time and in some places still is but if people aren't there when you're down, or aren't there for the daily mundane stuff, I just don't want to feed shallow connections while feeding good food. If that offends any people who made the list, they can skip the wedding and my funeral. I'll be happy but distracted at the first and not even paying at the latter.

We really are trying to focus on this wedding. We realize that some of our best friends we don't have many pictures with and it bothered me very little because we were so into the activity that why break it up. I'm a guy with a damaged memory but I've got wonderful ones with so many of these people and so we aren't going to fix that at the wedding, I hope we're going to continue it. We're drafting an email to guests and I hope people respect a paragraph that someone helped me write (my version might have been a little more blunt):

We don’t have a #hashtag, there’s no videographer, and you’ll get thrown into the fountain with your phone if we catch you doing Facebook Live or making an Instagram Story. We aren’t going to be posing for pictures before or after and the photographers know we only want genuine interactions, so please don’t ask us to pose; we want you take it in through your eyes not a small screen! I’m not sure we’ll ever get another day with so many of our close friends and family in one place so hug us, chat with us, play a game with us, dance with us, have a drink with us, and help us make meaningful memories with our guests. 

The thing about having had cancer for the better part of 8 years and having been to too many funerals and hospices is it really has helped me evaluate life and death better and how other people do it. I certainly am not arrogant enough to think everyone should do it like me and am annoyed at the people who think so much of the correct path through cancer, to death should be universal. I just want to see people and believe you me, I guarantee you our hearts will be filled with good memories from that day but there won't be any traditional posed pictures that get framed in this house from it. 

These blogs are all train of thought so I think I've lost me now so I've probably lost you. But there's a shelf full of mementos from races Elaine and I have done together, there's a medal hanger from joint medals Kiana and I have done together. I am writing on a laptop with thousands of pictures saved. I have a bin full of art Kiana has done, a few picture frames with some great memories. I've been emotional at the singing of the Mexican national anthem from some childhood memories. Medals and race stuff will be part of the wedding. But despite all those symbols, I got to be part of a conversation recently of what you would run in to grab if your house was burning down and I was honestly surprised at some things (no one I think chose anything practical, just symbols/mementos).  I said I wouldn't grab anything, let it burn rather than risk safety for stuff. If Elaine or Kiana or Puppy were in there, there wouldn't be a fireman who could stop me from taking a chance to get them out. But if they were all by my side, I'd give them the same hug as when that ring was left in the mud or that vase crashed into the tile and even if they were plenty sad, I'd hug them and be fully assured that not an ounce of hope was lost or broken. 






Thursday, June 14, 2018

Back to Where I Was

New life decides to come through the front door
And makes us wish we'd shown respect before
Though I don't have much of a choice
I resolve to regain my voice

If I only just begin to understand it that's because
Everytime I time I start to change my mind again
It gets me back to where I was


I am not good at looking back. It's funny because the reason this entire blog started wasn't for you to read it; it was for me to read it because I met someone who'd had issues in the left temporal lobe and they had a wish absence of almost a year from shortly before their brain issues to not recognizing their wife and child so I thought I'd write down the story, unedited, unfiltered, with typos. If I had to hear this story from someone else, I wanted to hear it from me. While it's nowhere at that level, my memory is damaged and still I've never read this blog at all which makes it a fair question as to why I'm writing it but it's still the same reason. My memory is actually damaged enough to where looking back doesn't flow right, yesterday isn't that much closer than few years ago, some moments both good and bad and insignificant are wholly gone or aren't recalled in correct order.

But long before brain surgery, I wasn't good at looking back. I left Mexico when I was 8 and haven't been ever back to visit the place, only family. I was transported to to a small town in West Texas after coming from Chihuahua (like the dog) to Kermit (like the frog) in a town that had about a thousand people for each of the years I spent in it. I left there shortly after turning 14 and had not returned once in almost 24 years. I'm not sure what prompted it this time around but it was the first time I'd taken my soon to be wife out to Odessa (we'd both been in the area before just independently). Having lived in a big city in Mexico, in a small town in Kermit Texas, on a small town in South Texas, in a small town in Napa Valley, in the city of Los Angeles, London, and in the Marshall Islands before settling in Austin has given me a great perspective in the world. It's helped me understand a range of ideas and I can see why there are good and evil people who both share and disagree with many of my views. But I digress, the main thought I had while being out there was the question of how different I would have been had I stayed there, doing what I thought I would which is work in the oil field like so much of my family including my dad to this day in his 70's? How different would it have been if I'd stayed in Mexico? Which years were the most critical for development and current thought? I'd almost certainly not be marrying an Asian girl. Heck, I can't recall a single Asian person being my friend until my adolescence in high school. Would I save my money for the things I do now or want the big truck like my dad and several of my uncles have? I learned to drive in a stick shift truck and it was powerful. 

I took Kiana and Elaine out there and showed them the house I was. Somehow, illogically, I told her all the less than smart shaninagans I'd gotten into like driving my uncle's car with my cousins a mile or so around the park, or shooting b-b guns in places I shouldn't have and after a quarter of a century I finally confessed to my mom one of the dumbest thing I ever regularly did as a child which was climb a lights tower at a baseball field that swayed with the wind. I've wondered many times how I could have been so stupid because at the bottom you go through the middle but to get all the way to the top required climbing on the outside and a simple slip would have resulted in many broken bones or worse. So I took the girls I loved most and showed the tower to them and told them about the stupidity of it and then climbed it in front of them. Yes, all the way to the top. I took them to all 3 places where I'd lived. Don't know if the houses seemed smaller because I was smaller and they were bigger in memory or just cause I have a little more room in a house now (my house is 1200 square feet but it seems much bigger than my childhood ones). The memories of how much I loved the library, the parks I played in. The entire town is only 2.5 square miles so they got the full tour in a short time and they had patience and smiles which ended with the place I'd get rewarded for good grades and perfect attendance with an ice cream blizzard. A few bad memories came up so I'm not repressing anything as well as silly ones like the first time I saw a girls bra strap at a park at this park. But mostly it was just good friends and family that came up. The first mascot I identified with, the Yellowjacket was in a few places, in the place I first learned to 'bee' myself. There were a few changes with the heartbreakign one was that the first track I ever ran in was no longer there but it felt like it had changed the least out of any place I've ever returned to or currently live in. 

Why had I not just gone down a few miles from my mom's house? I don't know. I've never felt the need to, it's like I've never gone back to high school reunions. I made a small appearance on my 10th one but no matter how good the bad or past is, I'm always about what's next. Why did I go now? I think it was more than anything to show the two ladies I love a little bit of my childhood, on the edge of town. 

It just rhymed with where we had been recently. Just a few days before, a week ago today, they had come with me to my MRI. I've ran and biked to and from MRI's and medical appointments many times in the 4 years since they let me start driving again but I'd never once had company in either one of those. This time they both biked to and from with me. Then they were both then the results. The night before I'd only asked one of them, Kiana, what she hoped would be the results. She said, "I always hope they they tell you its smaller or it's gone." I told her that was all but impossible and the best hope was that it was stable and she retorted without hesitation, "You can't tell me what to hope for!" I love that kid so much.

This was on the way home from the Moonlight Margarita Run with her. It's a race that I've done several years consecutively. Without exception I had finished in the top 10 every year but I knew this streak was going to end because for the 1st time ever Kiana was going to get to be part of it and she's still being kind enough to let me keep her company. It was the hottest one in its 15 year history. Kiana looked miserable early on and I confused my roles of dad/coach and asked her if she wanted to slow down. I got a loud no in return. About halfway she asked why I was slowing down and I said I'm just running next to you, I'm not pacing you and she reprimanded me with then you need speed up. With about a half mile to go, at the point where I know, I know you're supposed to be miserable if you're doing a 5k right, she looked so rough and I again asked if she wanted to slow down. She glared and again shouted no and then started picking off people and would get her fastest 5k ever, 21:33. Elaine was there waiting for us with the news that she too had her fastest 5k ever (a little under a minute faster than Kiana). My streak was over, just like my Austin marathon streak ended with running Kiana's first 5k next to her. Both of those streaks ended gloriously behind beautiful family. My concern for Kiana overruled the logic of that she was pushing her body the way she should be during a 5k. Her concern for me is that she was pushing her hope beyond what I saw as logical. Neither my guidance nor hope came true but I think we both netted great results. 

The next morning I got up and ran before they were awake because I don't sleep so well between the MRI and it's results but they came with me and the doctor immediately told me that everything was stable and we looked at it. The last (and only other) time I'd ever taken Elaine to a medical appointment my nervousness about medical results had interrupted me introducing her but this time the doctor knew who she was and carried himself with the same great demeanor he always does. He is the last wedding invite and I delivered it in person, unsure of how
proper protocol is in the patient/doctor relationship but decided ultimately it was his call. Kiana was holding the invitation and I'd joked with her that he was only invited if he gave me good results, something she pointed out was not okay and that she'd give it either way. I wonder who feels more awkward between the 3 of us, me, Elaine or Kiana as I'm sitting there sharing medical details including ones that I promise you I'd not want to hear about either of my parents at 11. Still, Kiana enjoyed the imagery of the brain though it was the first time she at least audibly noticed that its clearly my profile on the skull. It had no growth and it didn't show my hair so there wasn't anything scary showing on it. 

I slept really well last night even if there's been some stressors. We're working on wedding details, some of which are overwhelming to crunch numbers or with puzzles or logistics. Still I ordered our wedding bands yesterday, mine is super and hers is hopeful. I also ordered the bowtie I'm wearing (cause bowties are cool). Tomorrow there's a meeting with the caterer and other details with our great wedding coordinator. People keep asking if I'm stressed but I'm not because I take it in stride because I know it's just going to be a good party with good friends. I've never been to a party with good friends that the details were more important than the friendship. 

And I know that when I get home after it's all done and people have gone to their own homes, I get to go back to mine where there is a woman I get to call wife and a little girl who is growing wiser. I wouldn't have dreamed up this life in Kermit or in California or in the middle of some of the messes with brain cancer. It would have been beyond anything I'd hoped for so maybe I'll take that lesson from Kiana and rather than just focus on getting back to where I was that no one can tell me how much I can hope for. 






Thursday, June 7, 2018

A New Hello

I was chatting with someone about the beer mile yesterday, still an odd place to have been interviewed for. Still I was chatting about how I never do it with a beer I want to have often because it creates bad associations. Nonetheless, this week I've been playing with changing associations to a song that comes to mind almost every time I step into an MRI machine, a disturbed hello to the Sound of Silence. 

It wasn't a thorough effort, simply listening to other songs that literally are named Hello. Lionel Richie was the first to come to mind, quoted in today's title about a thought to sing to that machine, 'Hello, is it me you're looking for?' The theory is that they are looking for any changes to this brain tumor, to see if this cancer has grown. That invader fees like someone who walks into your house trying to rob all that's precious. There are reasonable people who would run in that situation but I grew up in a tough neighborhood and while in the entirety of my life, I've never started a fight, let's just say I've finished a few. If anyone ever did that in my house, they'd find me responding. I hope it never happens for many reasons but if it ever does perhaps once they meet what I keep near my bed for any emergency, I'll get it together enough to say "Hello, is it me you're looking for?" It obviously is not but I couldn't control the break in to my brain my cancer but I hope if it ever has or ever does try to stretch beyond where it currently is, that's the line it feels is being delivered from the rest of my mind, heart and soul. Those are the pump up thoughts I try to have, the ones that carried me to 3rd place at the pace I wanted to keep yesterday during a 5k. Kiana has her 5k tonight so she was kind enough to volunteer at the water stop and that may well be why I was able to close well.

There are negative possibilities that could come from the MRI. Yesterday I had lunch with a friend that we met at a church I've only ever been to for a race and the funeral of a brain cancer survivor I wrote of recently. While meeting him was definitely a blessing in the day, there is no way to not thing about that something could have changed and that maybe my funeral is not too far away. The most currently daunting Hello in my music library also has been listened to, it's Evanescence's Hello and the entire song is the haunting haunted type:

If I smile, and don't believe 
Soon I know I'll wake from this dream
Don't try to fix me, I'm not broken.
Hello, I'm the lie living for you so you can hide.
Don't cry.


Suddenly I know I'm not sleeping
Hello, I'm still here.
All that's left of yesterday.


By happenstance because literally none of us have the same doctor there are a few brain cancer friends who all have MRI's right around this time. Only two of us are in the same town anymore, the 3rd had a growth last December and is no longer alive. Another grew about a year ago so they're every 3 months but therefor their every other one still overlaps but they are in treatment and doing well but her and her significant other decided not to have kids. A third had some growth a while back and he has gone into kick ass treatment and he and his doctor got the results yesterday and were pleased. His next one will now be 4 moths. The other I still have no idea what happened and so I hope is all is well. One thing I will not be ever is in denial of the very real possibilities that come to people with this disease. Of course we all die but brain cancer has more statistical probability models than getting hit in a car accident etc. 

So I go in there in a bit wondering if soon I'll be working on my wedding and thinking about some medical decisions including end of life. It's no coincidence that I've been trying to figure out how to update my will in light of my upcoming nuptials. But I also spent some time in a furniture store yesterday looking at a table to complete one room's remodeling. I have neither updated the will nor did I buy the table... letting both maybes linger a little longer. 

Still, with rare exception, I have run or biked to and from my MRI. It's only 2.5 miles away after all. Depending on how much the contrast dye makes me want to or actually gets me to vomit is how much I variate the route to enjoy the route. Today, since it's summer time and both Kiana and Elaine will be joining me, I hope to talk them into biking the route there and back. For the longest time, my bike was my car due to 3 years of driving restrictions because of seizures from this thing. There's something freeing about getting to do it as a choice and perhaps it's naivete but I proposed with a ring that had hope on it, it's still the hope that movement outside is keeping my blood flowing to the good places and away from the tumor. Did I mention I have another 5k with the girls tonight and I'm getting up tomorrow and Saturday for a longer run? 

I'll get the results tomorrow. As always best case scenario is we took a really expensive picture of you to tell you you're not any better or any worse. There are people who I suppose hope things have magically gone away but I just have never even wished that was the case, the little girl I'm raising and the girl who is out my league that I'm marrying is probably already pushing it with the universe being extra nice in giving me good luck. The machine I'll sit in today doesn't change anything; it just tells me what's there, if anything ahs changed. We appreciate reinforcement of feelings I suppose, why we honk or swear at those people we don't like in traffic, why we send thank you cards and gifts, why we say I love you, they are demonstrations of actions when they are at their most honest. 

Still, I didn't sleep great last night. If I'm lucky, I'll do what I've done in the past and fall asleep in the machine since it's the possibilities not the process that can create stress. If not, I'll try to think about the fact Kiana's been in a transition to middle school this week and the bike rides we've had. I'll think about tonight's race and margarita (Kiana only gets to share in half of that). I'll think about the RSVP's to the wedding that have come and how I really hope so and so gets out on the dance floor. I'll think about all the jokes people have been making about my hair. It's a lonely tunnel in there and it's not wise to only let my mind wonder on what could be happening in my brain and not about what's going on in the rest of my life. 

But when it's done, I imagine the Hello I'll be thinking about will be Adele's and as I leave that facility to bike home, it will be good to say "Hello from the outside, at least I can say that I've tried." So if you're reading this, thank you and well the next time we see each other, let's have a good hello. 

Sunday, June 3, 2018

Only Human After All

Maybe I'm foolish maybe I'm blind
Thinking I can see through this and see what's behind
Got no way to prove it so maybe I'm blind
But I'm only human after all


I'm less than a week away from my next MRI and it's results and I can honestly say this is the most I've ever been distracted from one ever since the first one, which for some reason I didn't take seriously enough even immediately after a grand mal seizure. Now, let's not pretend like I'm completely distracted. A couple of weeks ago I was signed up for two athletics events in the last two weeks before the race, now I'm at 4 in less than a week, two this weekend and two evening 5k's next week and thinking about adding a 5th. I've been saying that I'm retired for a while but I can't figure out why no one believes me. The best predictor of future behavior is past behavior and I suppose the guy who snuck out of the hospital before a biopsy to run and who put off brain surgery to run a marathon has learned that maybe, just maybe my using exercise as therapy perhaps even immunotherapy has ground in that I'm going to keep it going. 

I was originally signed up for just two events in the two weeks before the biopsy, a ride and a 5k. It was of no surprise to anyone that I got talked into doing 5 events. Three of them are done and they all had great results, I like to think of that as foreshadowing. The first was us being asked to be the runners on a triathlon relay. We knew going into it they had a stronger swimmer and biker but the hope was that I'd be able to make it up on the run on Kiana's team and well everyone else's. As we were sharing the story at a couple of parties over the weekend it became very clear that the only people cheering for my team to beat Kiana's was my team. I was actually a little nervous for Kiana because this would be her first non kids race on her since I have always ran with her (she was so nervous that when I asked her she said yep dad sign me up). In a triathlon, the run since it's the last section is the least clean part of the race as when you start and who you start around is really irrelevant to how you should hold speed, essentially making it a time trial on your own with people around you. Kiana's team started quite a bit ahead of mine and I knew that as long as she fared decently there was no way I could catch up to her. While I posted the fastest run on the course, we would end up taking 4th place, just off the podium. Kiana's team would win the entire relay devision. I always said I'd somehow be both happy and sad the first time she beat me in a race but turned out I was wrong on the sad part. But it was also another first, she's been running for over 3 years and not a single time has she not PR'ed even when races have been really close on the calendar. She finally missed it and showed that maybe she's human after all. When that was pointed out, she knew her days of PR's weren't over and maybe talked a little trash about how one of us had a trophy going up on the shelf when we got home. 

But between that race and the next one was the end of Kiana's 5th grade, her concluding the 6 years of elementary. This was the elementary that inspired me to buy a house one block away so that we could walk together, intriguing how the universe was so kind to give that desire because for nearly 3 years of not being allowed to drive, I had to. The last few walks to and from school all seemed a bit too short. I tried to replicate the picture that I took on the first day of Kindergarten and the last day of 5th grade. The changing of the color of the house and garage showed, the growing up to new heights and wearing glasses was there and the one thing that was consistent was the one thing I honestly didn't notice until someone pointed it out on social media, that in both pictures she was wearing butterflies. It reminded me of the Angelou idea that 'we delight in the beauty of butterflies but rarely admit the changes it has gone through.' During the celebration event, the principal didn't help during the ceremony when he got teary eyed during the opening statement. The medical tests say I have better than average vision but I may need to get it check out again because for a lot of the last few days while thinking and looking back, things get blurry. 

Perhaps it's refreshing that what I'm most nervous about is Kiana going to junior high than the MRI results. She actually goes to a transition summer school this week where they teach them more about changing classes and changing clothes in front of people in the locker room for a few days. I'm sure she'll handle it about as graciously awkwardly as I handle getting into my MRI gown on Thursday. 


The other two events this weekend were the ATLAS 4000 opening ride for students who ride from here to Alaska to raise money for cancer research. It was a Livestrong ride that did that with that got me to learn to ride a bicycle. It was at that ride back 6 years ago in California that I picked up the ring of hope that's coming to fruition in August. Both last year and this year Elaine and I have both done it though we keep doing different distances on this one for some reason, despite doing the same one on the Livestrong challenge each year. It was incredibly hot this year but we got it done. There was a sculpture of dice that we had ridden by not far from the finish that is where we took the picture at. I liked it anyway but the guy who was born 8/8/80 made sure we posed in front of where the dice totaled up to 8. I've never lost on pocket 8's in poker (I have on pocket pretty much every other card). It's no coincidence that for several years now I've gotten my MRI results on the 8th of the month I'm taking it including this Friday. I'm actually a little nervous that the next couple it would be impossible to get results on the 8th since they fall on the weekend .

Still, we headed from there just like last year to do a 4 by 5k trail race in over 100 degrees. Teamwork makes the sweat work a little less. For the second year in a row our team won it so nice defended title and we followed it up at a party for one Elaine's bridesmaids at a restaurant named 888. How can I not take all of these as good omens? I mean, I'm not superstitous but I am a little bit stitious. I was and am nervous about Thursday's test and Friday's results. I still have my own 5k on Wednesday on national running day and doing one with Kiana and Elaine on Thursday to ease out some of the stress. Some people take a shot when they are nervous and we've actually been drinking a bottle of wine every week or two to try things out for the wedding guests but I think the athletic events are better at taking the edge of and watching Kiana grow up makes me greatful to be alive. Today is national cancer survivor's day. I never quite know how we decide on these days or months (except for Star Wars day, May the 4th be with you makes complete sense). I rarely acknowledge most of them but one of the emotions and thoughts that keep going through this damaged brain is I honestly would not have guessed nor bet I'd still be here more than seven and a half years after my diagnosis, watching my daughter finish elementary. The custodial thing is now fully wrapped up with my actually getting more time with Kiana in the future still in the home that she's lived in since birth and perhaps the one that she'll be at till she graduates high school (she has to move out 5 minutes after that, okay maybe a day or two). I would not have predicted that I'd be sitting here figuring out some cheesy, some fun, some silly wedding details which is about as dreaming about the future as I can. I even thought about that if life is kind enough to give us 50 years together of marriage I'd be 88 when the time came. She'd be 77, I mean 29. I mean my grandfather is in his 80 and my great grandfather lived into his 90's so why not dream?

But speaking of the wedding, my quest to grow out my hair continues. This all began as a gag with Elaine and Kiana talking about growing their hair out and when I joked I would too their remarks started about how bad I look with my hair puffing out. They laughed a little too hard and now I'm at over 3 months into it. Elaine originally was making remarks about it but realized the more people goad me the more likely it will never get cut. I walked into a conversation where she was telling people she valued humor over utility and I finally understood why she was marrying me; I think she was talking about a gift but hey aren't I also a gift ;)?

We will see what the tests Thursdays show when I get the results on Friday. If anyone wants me to tell them that my opinion is that everything will be just fine, they would be asking me to lie. But that is my hope and I live on that hope, the hope that the only scary growth going on come Thursday can be solved not a medical professional but rather by a solid hair stylist. That is this week's hairy hope. 












Tuesday, May 22, 2018

Walking Down the Aisles


Well, Elaine and I are finally getting serious as we're getting ready to walk down the aisles. That aisles is not a typo. We've been dating for the better part of 3 years, she moved in a little over year ago, and we've been engaged for about 6 months but this week we got a joint Costco membership. I mean now she will know just how much I like me some mass purchases. I've always said if they don't sell it at Costco, you don't need it (no I am not in anyway employed or sponsored by them but I really did buy my house partly because of how close it was to Costco). But I mean this is a serious commitment now. 

Actually, what is good is that the wedding on 8/18/18 is now 88 days away. What's important about that is that I know it, I have a reminder on my phone or a countdown really but what's fun with it is that I don't know exactly how many days till my next MRI. I've been measuring life for the last several years from MRI to MRI, really only until recently looking past it. I still get invited to speak and in the speech I gave to an all Hispanic Audience for the first time, I told a bit of our dating story and my proposal but I also ended with the reality that I still have brain cancer but between the MRI and it's results I have the Moonlight Margarita which is a 5k with good drinks at the end. I tried to be hispanically clever near the finish with the line of " I don't always get to control the beats and rhythms that life throws out at me but I figured these legs and that drink will make it a little easier to dance."" But actually while the speech was well received (it ended with people so cold afterwards that they stood up to stretch out and rubbed their hands together in a clapping motion), it was actually the toughest delivery I've ever had because dead center there was a table full of hispanic women crying. Somehow in my attempt to make eye contact and in the fact I still have emotions in this damaged brain I had to take 3 unexpected pauses to not cry at my own speech where I wanted to be like don't worry ladies, I don't die at the end of this story, at least not yet. 

It seems around this season I have at least one race scheduled every weekend. It's almost my tradition but before it was therapeutic. I think this time it's just for the run of it, wondering how long the legs will hold speed, not how long the brain will hold cancer back. The focus of the future has been the details of the wedding, some jokes about the silliness of the sacredness of this human ceremony. But in little races where Kiana PR's or Elaine PR's or we do a team scavenger hunt which last year we took 1st and this year we took 3rd and I go, okay hope we can do this again next year and still place but the if is just that there would be no conflict, not whether or not I'll be alive. Believe you me, I still wonder and worry but while I took Greek, I don't do Hubris. The honeymoon will be in Greece by the way, seems appropriate for people that met training for a marathon and got engaged at the beginning of a Spartan. But now the future is something that I dare to dream out loud. Someone who I hadn't talked to in a while even wondered how Elaine moved the mountains that I'd put to protect other people from my future. I don't have a good answer for that but I hope no one regrets it ever and certainly any time soon. I haven't completely forgotten about it, nor have my nightmares as I dreamed recently that in the MRI my tumor had grown and we were trying to decide whether or not to proceed with the wedding with a predictably shorter life span (we did) and whether or not to tell many people that this was coming (I woke up before that decision was made in the dream). Not a fan of the dream but in the scheme and pattern of the last few years, I prefer that my daydreams have more joy than my sleeping ones because in those I have a choice. 

The custody thing went almost entirely as I'd predicted and 98% in what I'd hoped for. It's still technically not done because legal documents aren't signed. The judge had a few cases and so it took almost two months to get to the ruling but while the facebook nod was that Kiana would still be spending most of her time here, the truth is that she'll now be having slightly more time at what I call home. The universe  has been kind enough to reward the one thing in my life I feel like I've focused correctly on and I'm thankful. 

Kiana has 5 days left of 5th grade and then she's no longer in elementary. She never calls herself the next grade till it has started but she'll enjoy being a 5 1/2 grader for the summer. She got perfect scores on her standardized testing so at least one brain in the household still works pretty well. But she keeps a fun balance as that picture on the swing shows with great grades, making the theater team at her junior high and recently doing her first timed mile at a 6:06. I don't recall but I'm not sure my first timed mile was that fast. Not that I'm bitter or anything. 

And all 3 of us are still swinging, running together sometime, sometime separately. Some are disciplined runs, some are philosophical runs, some are ones where we end up taking a break in the middle to swing into a river after a rain storm. Oddly enough the death in my household that I'm the most worried about is the 4th soul in my household, my 14 year old dog's, Puppy. It's funny the venue for our wedding stated that dogs can be there for the ceremony briefly and I thought that was so cheesy when we booked it. But now as she struggles when we get in the car and the stairs and the walks are still fun but growing shorter in her old age and Texas rising heat, I wonder if maybe someone is going to end up being my favorite guest by bringing her and taking her home. I don't think she'd care but if she's still around, why not have the whole family? Have I become one of those cheesy pet people? 

I guess I'll be in a machine in a couple of weeks to see if I keep being part of the minority with brain cancer. It may show the stressor of it that I have a 5k the night before the MRI by myself but I'm learning because between the MRI and the results, the 5k I'm doing it I'm being joined by both Kiana and Elaine and the ARC board as I start my 4th year as President. I'm looking forward to the fact that I have promises to keep and miles to go before I sleep. 

When Kiana says I love you, I often respond with I love you more etc in a cheesy back and forth. Somehow until recently with Elaine when she said it or I said it, it was always I love you too in response but recently I started with I love you more as the response once in a while. She joked that she wondered if it was me being competitive or affectionate and of course it can be both which is what I would call a win/win (for those of you who think life is not a competition, just realize that at your conception there was this big swim meet with thousands and thousands of swimmers and you won, that's how you were born! I just have kept that spirit up!). But believe you me with everyone I love, I'm always going to try to be the one who loves more because well I've been a costco member since I was in college, so I like to do things in bulk. And if every once in a while that gets messy because love can be complicated, well love is something I hope that those around me are willing to clean up in the aisle.

Tuesday, April 24, 2018

Hide Out Under There

On an evening such as this
It's hard to tell if I exist
If I pack the car and leave this town
Who'll notice that I'm not around
I could hide out under there
I just made you say "underwear"


I've never been comfortable with funerals or memorial services, perhaps very few people are but somehow I've ended up attending too many.The first personal death that made an impression on me was my great grandmother in 7th grade. She was, as is the nature of grandmothers, always old from my perspective so in a different category of humanity as me, still growing, in our youths we tend to be a little less mindful if not downright in denial of our mortality.

The first one that made an impression of that was in college. There was a friend who literally died on her job between in my early college years, the same age as me, not even old enough to drink. I intended to skip the funeral but went and even spoke briefly at it, quickly and quietly learning the lesson that a lot of people say at funerals what should have been said before the person was in a casket. This was as close to justified as I've ever seen it because it was someone young and a sudden death. 

In the Marshall Islands where I volunteered as a teacher after college, funerals a big event and I attended too many (is there a right amount?). It's a continual ceremony over several days with one group entering the family room where the casket is there and everyone sitting in silence for a while. There is some interaction between the family and the most important person in the group (this often defaulted to me as I went with students) and then leaving of cash or soap directly on top of the open casket window. 

The challenge though of the vast majority of funerals and memorial services I've attended over the last few years is that they have been friends who I've met through cancer circles. They are friends who our denial of our mortality had become, depending on the individual, sometimes much stronger and sometimes much weaker as they dealt with the disease. With only one exception, I've actually passed up any formal part in a funeral, big or small, other than attending. The things I need to say I say as long before as I can. The fact that I do not part take in the formalities says something but perhaps just as telling is the reality that the first time I got a babysitter after becoming a single father was so that Kiana would not have her first memorial service be that of a stranger to her. And while I'm less than 4 months from marriage, a few days ago was the first time I took Elaine with me to a memorial service. In far too many of these services, I am the only or only one of a few people in the audience that came out of their cancer circles. I've worried if perhaps I'm doing a disservice by attending, a reminder that cancer has been unfair and taken far better people than me faster. 


The memorial service we attended was for Minerva, someone who I've written about before. Like all good memorial services, there was laughter and tears expressed the exclamation parts throughout years. There were gaps that left question marks. Like all individuals there were moments that made the death a little too mistimed, her receiving her cancer diagnosis on the same day her daughter got accepted to MIT. She wouldn't even make it to her daughter's graduation but MIT was kind enough to have a private in advance ceremony video to send to her mom for her to view back in Austin hospice care. There was a slideshow during it, of a picture of the race we did together. I pushed her in a stroller for a 10k, where she own her age group. I always wear the 'you just got passed by a survivor' shirt to that race but that picture was somehow a great memory of remembering exactly how I had Minerva's back. But in total frankness, it was also a guilty moment that being shown at her memorial service where I was still standing and she was gone. Cancer changes many of us, especially brain tumor survivors where we lost part of who we were, because we literally lost part of our mind. Listening to those stories while someone is recovered or recovering from cancer can be inspiring when you've met someone after they had to relearn to walk or talk. Hearing them at funerals can have a comforting or discomforting effect, sometimes both simultaneously. 

It was a Christian ceremony, my own church was intrigued to see me in dress clothes at church but it was because I was going to the ceremony afterwards. There was the usual talk of heaven and some beautiful singing. But it did and has thrown me off since her death and memorial services as many of them do, this one more than most. She was a friend who I'd gone to her house, her hospital, her hospice, who I had cheered on in races. And yet when I was at her memorial service, there was literally about a handful of people I knew in the room. It can be odd at ceremonies where see that someone's circles are strangers to each other. At my wedding, I hope to bridge some of those gaps. At memorial services, I don't quite know how to approach it so the only people I talked to where the family members of hers I had already met, the person who introduced us and Elaine and even with those I didn't say much. 

I mean no disrespect to how anyone handles death and anyone who is easily offended should probably never read my blog or be my friend. But it seems at funerals and memorial services or perhaps the subconscious of this blog is to try to narrate, make sense of the story. It's what the human brain is literally wired to do, take points and weave them into a tapestry. At night when the brain does this we call these dreams or nightmares. During the day, it's a bit more complex and sometimes we call it history or politics, religion or philosophy, excuses or justification. There are some of those I think are true while others would believe the opposing belief is the real truth. I hold my convictions with conviction but I've been wrong enough to where I haven't achieved the arrogance to think 100% about anything. But when funerals or memorial services come, I listen to the ideas being proposed out there to make it a little easier to accept someone being gone. On some of those, I absorb the reality that the universe was around long before I came into it and will be around long after I'm gone. There are moments where, me the guy with a religion degree, remembers his comparative religion class where we all had to talk about if we knew we were going to heaven/hell, which religion's heaven or hell we would pick? (I'll tell you mine if you tell me yours.)


But oddly enough, the song that has recently been stuck in my head is the one quoted above. Making dramatic gestures at funerals can be comforting, our ideas and religion can be where we hide as well. Humanity wishes to control our destiny, even after death sometimes, or at least delay it. I mean I'm a guy who walked out of ambulances, put off brain surgery to run a marathon. It's why we like great doctors like mine and some would argue why certain religions were made up (this of course applies to every religion except the one you or I subscribe to, that one's universal truth).  I long ago gave up trying to impose too much meaning in death. It's beyond my imagination to make logical sense of it. But when I ran behind Minerva when I walked next to her, when I visited her in her home, in her hospital room, when we went out for breakfast, I knew that knowing her for just a few years due felt much too short. If I'd known her my entire life, it would still not be long enough. But I also know, that in the heartbreak of it all, like the greatfulness of the privilege of knowing her at all, those connections don't make death any easier for me but they do give meaning to life itself.



How we handle different things says something about us and the things we're dealing with. I wish to be cremated and flushed down the toilet and hope there is no funeral or memorial service. Or that if there is an the wish above is respected (the executor of my will has said he intends to ignore it) that everyone just line up to use the toilet sea that's already prepared for it. But ultimately funerals and memorial services are for the living, for self comfort, to tell and hear memories. I left Minerva's funeral and went home and then Elaine and I did a run/bike workout that we'd never done before with both of us going to places we'd never been in parts of it. Then we went and climbed a tree house. 

I also got home and sent some texts and emails and made some calls and with only one exception they were all people I regularly stay in contact with already, just wanted to make one more connection point. Yesterday Kiana and I went on a run and then went and climbed the same tree house. Those have been primarily the places I've hid to deal with my mortality, in exercise and in working on the relationships I want to keep to try to figure out what all this is for and seeing the humor in the situation. I am not suggesting that's a universal truth but if it ever rhymes with something you're interested in doing, you too can come hide with me under there. I hope you just said underwear. 




Monday, April 16, 2018

Shades of Gray

You can't change a stubborn mind You can't see the world if your eyes are blind 
What does it matter anyway In our darkest hour we're all just shades of grey

-Amanda Marshall

I was recently on a ride with two good friends, one has been a good friend for about a decade and one for about half that. We're all mature in life... and at the time we met we weren't in a serious relationship never going to get married and/or have kids for the first time or again. In the last 6 months, we've all gotten engaged and are engagements are lasting in length in negative proportion to our age...  Clearly we're people of conviction. We celebrated with a bike ride and burgers recently and did some heckling. 

It's a little over four months till the wedding and people keep asking if I'm stressed. We're not. We've both planned events on our own and have our good friend helping as a wedding coordinator. There is some concentration and energy and disagreements but that's called life. The other event that's taken up a lot of questions is what's going on with custody... and the answer is I have no clue. It's been seven weeks since the hearing and the judge still hasn't ruled so we're still waiting. Am I nervous? Of course, leaving your fate in a stranger's hands is well strange in my book but I've literally had to do with life and death issues with much longer wait periods with oh... brain surgery. I certainly have some different ideological approaches between how I parent and her mother does (and it takes no brain surgeon to realize we couldn't agree on our own and we both think our method is better enough  or else we wouldn't leave it in a stranger's hands). Still, while there's some anxiety, I have a hard time believing that anyone rational would make a big change in Kiana's life with her track history. Nonetheless, I try to follow my grandfather's approach to life, one day at a time, I get tired when I try to do two. 

It's been half a decade since I won a marathon and the media that followed. I honestly didn't think I'd still be alive today... the dreams them were just to get through the next MRI, getting to the next one was a question mark followed by an exclamation of relief. The dreams since then have become a little more fun since then. When Elaine moved in and we started living our life of sin a little over a year ago, we started doing some things on the house. I made this crazy list that I thought would take us oh a least a few years. There are 3 things left on that list with the latest one that got done being painting the outside of the house. Like a fair share of the remodeling we've done it ended up being shades of gray. It's one of our wedding decoration colors. The easy joke of course is that we'll eventually if we haven't already gotten to 50 shades. But actually the song that I have on a playlist that I'll have playing before the wedding has a song on there quoted above, that in our darkest hours we're all shades of gray. It's like when you're drunk people say it's who you really are... I disagree with that, it does show something about you but it shows your undisciplined self (I'm a philosophical drunk) but who you've become through discipline and choice is also worthy of consideration. But when your back is against the wall... when it's fight or flight... it says something. The guy who put off brain surgery to run a marathon is a story told often but the one the guy with a damaged memory remembers is the guy who focused on only the serious medical and financial stuff and neglected some relationships so I'm trying better on that end.  


I'm also having some fun with it. I've taken pictures of Kiana with bluebonnets since she was a kid. This was the first time I jumped in on it. Kiana's picked up my competitive edge and I'm trying to help her focus it. I'm still trying to contribute and train and gun. It's a fine but fun balancing act. We've each done fast 10ks in the last couple of weeks. Mine was not my fastest last week but I hit the elite standard. I was impressed in February when Kiana averaged a sub 7 pace for a 5k. Yesterday Elaine kept a similar pace for a 10k... Kiana did it just a few seconds over a 7 minute pace and beat her by less than a minute. That was a phenomenal individual accomplishment by both of them. But that wasn't even my personal favorite part. My parents came out for it and they ran the most they have in a 5k in a while getting good times. They've been married 3 decades or so now and perhaps the fact that they do all their races together tells you why. 

The Longhorn Run I was the 1st non student in 3 times and took third place the other time. The first time I ran it was with a stroller back in 2013 but here in 2018, I'm getting closer and closer to a dream that requires looking ahead far more than the next MRI.  It's getting to do the races that I did with a stroller with Kiana side by side (or these days often out kicking me). The Marathon I won, the one I put off brain surgery for, the one I won the stroller division in, and now the longhorn run are covered. We're going to keep going as long as I'm healthy and Kiana likes it. Turns out anyone who thinks running is a solo sport wouldn't rhyme with our approach that it's better shared. This running races ain't no thing but a family thing but the best time was that I started dreaming something up a while back and it's one of those times where the dreams that you dare to dream really do come true. 

I've taken 1st place male in another half since Beaumont (yep I got beat by a girl) by sprinting and winning it by less than one tenth of a second in my closest long distance win ever. I've kept supporting brain cancer races and took 3rd in the Head for the Cure race. I keep contributing to the communities that I'm a part of as best as I know. My 14 year old dog has good days and bad days and I've found new trails behind my house and we've been enjoying the spring weather out there. She has been off leash for most of it and even as she struggles more on some days than other and somedays she seems much younger than that, it takes a brief look at that tail wagging even when she struggles to climb up thing to reiterate to myself that there is zero chance that I'm going to fade away sitting in a nursing home if I have any say about it. You know during q&a after speeches, I get asked if I changed my diet after I found I had cancer. I respond with that I'd always eaten healthy for athletic reasons but I was taking in more dessert if I likely wasn't making 40... I might make it now so I'm not having as much dessert as a few years ago but puppy at 14 gets a treat pretty much on demand and I have no apologies for that. 

We're still taking on new adventures in our own messy way. Kiana did a spartan where she lost both her shoes in the mud very early on and did it anyway. I mountain biked for the 1st time since college and well whether or not I have any more kids may have gotten decided on one of those bumps. Kiana has gotten to ride on bumpy trails for the first time. I finally joined a gym for at least a bit to try to keep up with Elaine's workouts. People say I'm stubborn and I am but it turns out I can change my mind and occasionally aim that stubbornness in a new and healthier direction. 

What can I say but that life, life is good. I am never going to be perfect or handle stress without mistakes; I don't know anyone who has or does. But I'll tell you my darkest hours these days or any upcoming ones, I hope the stars shine a little brighter.