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.