Thursday, June 8, 2017

Russian Roulette

With a pending MRI on a recent run with a friend, someone asked if I got more confident or less confident with each MRI and potential results. In one of my less than eloquent answers perhaps because Russia has been so much in the news these days, I said it honestly feels like Russian roulette where the chances don't ever feel any better or any worse but at best you come out with another turn and at worst you're looking at death. I've only fired guns one weekend of my life and certainly never aimed one at myself so this isn't something I have much knowledge or experience with. 

I completely grant that was not one of my better choice of words but if there's anything I've ever shown in this approach to life and death it's that well I don't pull the trigger lightly. There were 3 events the weekend before. The first was the Atlas Ride where the Texas 400 did their first ride on their way to Alaska. Almost 70 college kids will go on 3 different routes form here to Anchorage on their bicycles... I did the 50 mile ride that day and while it was not officially a competition in anyway me and the two guys in the front when it got down to about 10 miles to go, one of them said it's always a race. I was the first to finish. But that wasn't anywhere near the main highlight of the day, I started the ride with two cancer survivors who mean a lot to me, Will Sweatnam and Mike Thompson, oddly enough Will was one of the guys who was there as I was learning basic things about a bicycle half a decade ago. Mike at the time was working in a bike shop and helped me maintain the bike I would use as my car when I wasn't allowed to drive. It may have been a point to point ride but it felt like some very good things were coming full circle my first time joining the Texas 4000 as they took on Atlas.

There were 25 and 70 mile options (the 25 one started two hours later) so after I got it done I headed back out and finished with my girlfriend. She looked good in the Livestrong gear of her own and while often when we have done trail races she has been doing the longer distance, twice or 3 times as long, it was nice to show I could last longer for a change. 

But we headed there for teamwork. We went to a trail race where arriving less than 30 minutes before the start of a running festival we would put together a team of the 4 by 5k relay. We had decided if we arrived on time we would put together a team and in worst case scenario we'd each run two legs. Let's just say we didn't just put together a team, we put together the winning one. It's the 4 relay we've placed in and the 3rd one we've won. It was a cool trophy and it resulted in a shelf now at the house for our joint medals and trophies. I hope that shelf keeps growing just like the ones with Kiana and I has kept growing. 

It was pouring rain at the trail and many people headed out before the 3rd race but well I wasn't one of those and took off for the 3rd race of the day. It was an evening 10k and well... I won it. When I originally got diagnosed with brain cancer I put off brain surgery to run a marathon and qualified for Boston. It seems I always race intensely before medical appointments... 2 years ago I did 4 races in 8 days and placed in none of them but enjoyed them all. Last year I did 3 races in 3 days and placed in two. This year I did 3 in 3 days and was in the lead of them all. Somewhere it may well be the subconscious but I want to know that if some trigger is being pulled that I had some say in how much conviction it got pulled with. There may be people who call that naive to think it's all just chance but I never quite forget that I have a brain cancer that has no known dietary, genetic lifestyle or environmental components. 

To pretend like I shook off the impending MRI would be a myth but I don't pause for it. We played a poker game the night before with some of the same people who had played in the hospital when this first started and a few new ones. As I prepared for it with stiff legs thinking that my exercise is habits is my way of fighting cancer I echoed the song that was playing the background 'luck ain't even lucky, gotta make your own breaks.' I'd end up taking home not the win from the poker game but more money than I had put in. I like that approach to poker but I hope it's the opposite in my life, that I put in more than I take out. Not quite sure how that works with the laws of the universe but that's my hope. 

Kiana and I are on a mission this summer to catch some things we've long neglected around our own home town. We found a tree house that I climbed up first and reminded Kiana that if she broke her legs she shouldn't come running to me. She got up and down from the tree faster than I did. I kept trying to find ways to stay busy till the moment of the MRI and then even busier between the results.

I've been to this MRI place for years (that's both a good and a bad thing I suppose). I have no idea what procedure was happening but from the moment I walked in and for a solid 10 minutes there were screams in the background, not muffled but just outraged screams from a child. They were those primal ones that you hear and you're not sure anyone can comfort because the procedures presumably necessary. It took plenty of focus to refill the documents I'm given every time as I just kept listening to those screams but when I to turn them in it was to a new front desk lady who was named of all things, Hope. That's what the MRI feels like, somewhere a balance of primal screams and Hope trying to be helpful through the process. 

There was actually something different about the machine this time. For the first time ever they said they could give me earphone to use in there as opposed to ear plugs. They asked me what radio station to put it on and I tried while we did the first set of imaging (the one without the contrast). But then I remembered during that first set and as I listened to my favorite radio station a piece of advice I'd been given when trying new drugs which was not to have some of your favorite foods because their taste might change for ever due to emotional associations and vomit associations. I'd listened to that then so I have no foods ruined for me. The contrast they inject with rare exception makes me throw up so as they came in I said thanks but no thanks and handed the earphones back since I didn't want any good songs associated with that machine or that vomiting feeling. That would result in me being in there for the first time without earphones... let's just say the machine is loud.
But the louder part is from when it was over Tuesday evening till results this morning. I tried appropriate and inappropriate distractions for the scanxiety as we call it. Did a track workout with heavy legs, a Marathon Kids Ambassador Training Day, a social run for Global Running Day. For the 3rd year in a row I've had an MRI between national cancer survivor day and global running day... I can't ever quite decide if it's appropriate or odd that I'm stuck between those two. 

But while it may feel like Russian Roulette and while there are suddenly arguments in the news and politics today about what things from Russia we should take, the one thing I hope to not be in life or social media or my approach to cancer is a Russian doll. I don't ever want to just be full of myself. Still as I perused through social media, there were 5 of us who were due for scans and or results within 24 hours of each other literally all doing scans in different cities and states. Three I've met through brain cancer events but one was a running friend. I reached out to them and was intrigued that we had all ended up on the same schedule. While none of them knew each other I wished them all well and the same in return. 

In complete honesty, my girlfriend has asked to come to the MRI all but insisted on it but I am just not there where I'm ready to let someone join me there. Perhaps it's damage, perhaps it's protecting others or even self protection. I mean I tried to kick my mom out of the hospital room before brain surgery... I appreciated the insistence and well a thought that went through my mind in that machine there's at least room in one area of my life for growth. 

When results were due, I took Kiana with me. She's stuck with me and my results for now and sat and listened as the doctor said everything was stable. The last time one of the measurements had gone up a millimeter. This time one went from 14.04 to 14.10 which was nothing to be worried about. 6
hundredths of a millimeter matters in very few areas of life including this one but I still noticed it. The doctor talked to me about recent races, about Kiana's races. I talked to him about how I needed a new primary care doctor due to the most recent appointments (she's great and so is her nurse but I've had so many ridiculous billing issues with Seton that I finally decided I'd rather not keep dealing with them. With the most recent billing problems it literally took hours of phone calls and 16 different people before we got it solved. I left on a voicemail and will put here in writing that I'd rather die than have this process play out every time I have to have an appointment. He gave me a referral.) I talked to him about how I'm serving help develop the new Livestrong Cancer center at the new medical school. We talked about my piss poor problem and we looked at my MRI different than I ever had before specifically how near the tumor was to my pituitary gland, something we've talked about before due to other side effects. 

The last several years worth of appointments have been on the 8th of something... so the next one is December 8th. If somehow the way you spin the barrel and hold things keeps consistently keeping you alive, I don't mess with the formula. But one way I did mess with the formula was usually I go to the Hope Outdoor Gallery before an appointment to 'just breathe.' Summer time is sleeping-in time so this time I went afterwards and for the first time ever either of us, both of us, spray painted. The first thing Kiana painted was a heart, something that somehow has in my view both stayed steady and kept growing for me. 

But the story may be that for me today but it doesn't end that cleanly. Because when I got home, I checked on everyone else. They almost all got stable or clean results. But Matt, a guy who I often refer to in speeches who I talk about in media interviews like the Spartan one, someone I met at my first brain cancer event. He's relearned to walk and talk and it was after that he did his first marathon. He's why I got mohawks and a little more comfortable both with being an advocate and living with the scars. He's the one I stole the joke from that if the brain cancer doesn't kill you the medical bills will. He's the one who always tell me to leave it all out there. He's been stable far longer than me but on his scan results today, there is now a new tumor at his skull base and will have to have another brain surgery next week and likely have do radiation and/or chemo not long after. As soon as I heard the news I offered condolences and he offered congratulations on my stable one. I said I wish I could trade him spots and he said he'd never let me do that with Kiana. 
I have another race tonight, the Moonlight Margarita Run 5k, a race that has honestly never gone that well in Texas heat but we present a check afterwards from the Austin Runner's Club. I have a Spartan on Saturday. I was going to take them a little less intensely than last weekend's races and it tells you something they are the last ones I presently have on the calendar till September. But I'll go out there and give it what I can with a little more conviction and a little more purpose. I'll see my family and friends at the Spartan. Kiana and Elaine will be home tonight. I'll hug them all with a little more conviction. 

The Russians have a saying that a bird is known by its flight. Matt texted me before either of us has results and said that he prayed for us to have clear results. The years and the symptoms and the struggles of brain cancer are something we've flown through or above, sometimes with mohawks to be a little more aerodynamic. I told him all I ever hope for is is to handle the results well no matter what they are. I think loving and living with conviction is something he shouts and I try to echo it and I think despite our different results that won't change and I really believe that for both of us that's handling it well. 

Friday, June 2, 2017

Even If

'They say it only takes a little faith to move a mountain
Well good thing A little faith is all I have, right now' -Mercy Me

Cancer survivors have little things that sometimes scare us... This fear of re-occurrence, or of growth of a disease whose symptoms are often not foreseeable or detectable by human norms still causes everyday things to be slight panic moments. I and others tell the bad ass stories of the people missing a lung or a leg who hike Everest or finish an Ironman. But there are ones that are somehow both sad and amusing, my freckled cancer friend who had skin cancer who always loved her freckles even as a child but now worries that one of them is changing shape. Summer is a time for long sleeves not extra freckles and she draws patterns on them somehow believing that if they line up properly like the right armstronomy then everything is normal and surely that one's not extra big right, it was always the north star? I have a young friend who decided walking was better than hard exercise because he wanted the bone cancer to be kept at bay but the soreness of muscles made him too nervous. There was the older lung cancer survivor friend who wondered if he should slow down since missing a lung because he thought making the shallow lungs work too hard was dangerous if he only had so much breath left. There are amusing stories like one breast cancer survivor who in her own words ask her husband far too often to feel on her breasts for less than erotic reasons and the colon survivor who acknowledges that he spends too much time wondering 'if anything new is up his ass and so he watches his shit closely.'

I have brain cancer so the truth is I don't pay attention to my body as much. In fact during Q&A during speeches a question I get often is if I've changed my diet because of the diagnosis and I acknowledge that I actually always ate relatively healthy for athletic reasons but now I have dessert more often since if odds are I'm not going to make 40, I'm going to enjoy all things chocolate till then.

But there are mental symptoms that make me wonder. There are times where I can't find a word, probably an everyday quality for all of us but then I remember that was one of the tests that went down in capacity after brain surgery near the language and memory center. It is a strange thing for a damaged brain to be wondering if its own damage is growing... There are memory moments where I forget someone's title that I've worked with for two years or say a different name by association in back to back moments on stage. I've got enough of a sense of humor where I play it often to everyone but there's a little sadness in me on those moments, something I try to comfort myself with the phrase that sad is happy for deep people.

When this all started, I had been having moments where I couldn't read for a few seconds, when I couldn't 'think'. It was only a few micro seconds with the suspicion now that they were micro seizures and the last thing before that grand mal seizure was that I couldn't read the menu at a birthday party. The thing that got me fired was making memory mistakes on the stand.

So lately I've been losing my wallet. It's not a new thing, I lose it once in a while as well as my keys. People have tried to comfort me about it by saying well Einstein was a genius but he couldn't ever remember little things like that. I never had neither his intellect nor his forgetfulness before brain surgery. But the last time I massively lost it was over 2 years ago 4 MRI's ago. That one as soon as I realized it was gone, I remember I had been at the Ladybird Johnson Wildflower Center where I had decided to jump over a river and had emptied my pockets in case I missed I didn't ruin my wallet or phone or electronic keys. I nailed the jump but forgot the wallet but would get it all back together a few hours later, in the middle of the night with some criminal trespassing where I got caught but got let off after I explained why I was back.

Since the last MRI in December I've lost it 4 times. Once was after a party where Kiana and Elaine helped me look for it and after hours and hours and hours of searching I finally remembered that we were playing darts in the garage and I was wearing running shorts that barely had pockets and I'd put it to the side; it was still there. There was another time where again after a few hours it came back up and in my constant use of humor as a coping mechanism I even had a facebook status about how me losing my wallet was good for my house because that's the cleanest it ever was (someone chimed in that it was always the last place you look because then you stopped looking). A couple of weeks ago, I lost it again and spent 3 days looking for it before finally cancelling my credit cards and debit cards. 10 minutes after I did that I remember we had an unusually cold day in May and went and found it in my jacket pocket in the closet. Once again, I used the coping mechanism and a Facebook Status about how I'd be very financially responsible for 5-7 business days.

Today I once again lost it and I knew the last place I had it was right outside of a liquor store I parked at. I was taking Kiana and one of her friends to a swimming hole that starts near the parking lot and realized I hadn't brought water so I was going to buy some but you  have to be 21 to enter and I wasn't leaving two little girls on their own period much less outside of a liquor store. That was the last place I remember having it and needing it. We would walk the 1.5 miles to swim and enjoy it. We'd walk back and drive home and pack up her friend's bag. Then an hour or so later I realized I needed my wallet and I once again tore up the house and the car. I finally wondered if I dropped it on the hike so drove out there again as the sun was setting walked the entire way. On the way there I sent a message to Kiana's friend's parents... I kept walking through that trail and if that's not the definition of walking through the woods deliberately... it was exactly when I got to the furthest point and realized it wasn't there that I heard back and the wallet was in her friend's bag.

When episodes like these or the keys events happen, someone always suggests I get something to keep with one or the other or both that's trackable by an app. I cheat/compensate for many of my deficits with technology. For some reason these two are the stubborn holds. My memory may not be what it once was but one thing it does remember is how good it used to be. I keep a tight compensation thing on things that anyone else depends on me on, contacts, calendar. But the things that usually only affect me take longer to accept. It may be why it took so long to stop the seizures because it literally took me years after brain surgery before I accepted an app to check off my medication. I'm a proud man all around. Even as I struggle by merely aging to keep top speed I finished 3 of my recent track workouts with extra fast speed workouts. So fighting aging and cancer this way can't be fully called intelligent or stupid or can they?

But I have an MRI Tuesday and the question lingers are these just oversights or has the tumor grown and messed with memory more? The answer of course is until the results on Thursday I don't know. So a thousand thoughts go through my mind on an extra 3 miles looking for a wallet about that MRI. How to properly balance nervous energy and hope I don't have a great answer to. Some of it I do by looking at recent victories. Kiana just finished her 4th grade year, once again with straight A's and perfect attendance. This was literally just a few days after I paced her for fastest 5k yet in the worst weather she's ever done a race in. A new PR of 23:37 and she was once again the highest fundraiser at the event, beating both her time and fundraising from last year.

It also happens to be the 5k celebrating its 40th anniversary. When me and a few others joined the Austin Runner's Club the race was barely over 100, the next year it was 350 and this year we went over 500. The right team work... worked. Not only that, it was almost 5 years ago that I started doing races in a stroller but still my parents were out there too going side by side and finishing the race together. There are those who say pride is a sin but we're Leons so that's a good pride in my book. Whether or not I'll make 40 will remain a question for at least 3 more years but we enjoyed that the Daisy 5k did.

How to manage being nervous about whether or not something has lost equilibrium is by testing my own fears. At a friend's birthday party I rode once of those ancient bikes... I rode first and longer but also fell harder than anyone else at the party. I choose to act on the belief that sometimes balance doesn't have to be graceful or modern.

In fact the retouches, remodeling of the house continues. Just today I got the flooring that will get put into my bedroom soon. The room that had never had anything done to it will now have a new closet, a redone bathroom and now a new paint job and floor. With the MRI so close I honestly thought oh I should hold off on that until I see the MRI results since if they go bad I won't be alive that long much less living in that house. But ultimately I decided that no matter how it all goes, literally the last few steps when I rise in the morning or when I go to rest will be on a floor of my choosing. I in fact won't have a chance to get it done until after the results are in but it's going in no matter what to ensure that something still wins quite literally step by step.

The coping mechanisms haven't changed, perhaps having even grown more intense. Between pacing and racing I did 3 races last weekend, 2 the weekend before that and I have 3 tomorrow. Each has been with family, friends and the Bond girl. Tomorrow I am doing the Atlas ride with the Texas 4000, a group that cycles from Texas to Alaska to help out with cancer awareness. It was to be part of one of their rides that I actually learned to ride a bicycle a few years ago, something that would be very useful when I wasn't allowed to drive. And now I'm doing it again tomorrow with the Bond girl. From there we go to a trail race where we'll camp out. It was after a camping out race near a lake where she asked me out on our first date. The universe is being very kind right the weekend before this MRI. Perhaps the reason the bedroom needed some retouches in many ways.

I had lunch with a pastor friend and the honest truth is I didn't even tell him about the upcoming MRI. I never know what to say because people always offer to pray and I've never prayed that my cancer never grows. There's always songs I listen to when all of these things are going through my mind about if anything is growing in my brain. One of the most recent additions is the one quoted at the top and what this entry is named after, Even If. It's basic premise is that even if the mountain doesn't move, hope stays. It's a word I hang onto, one I make out of rocks and wood in moments like when Elaine and I went to the South Congress area of town with Kiana yesterday. There is a wall there that Austin is known for that says 'I love you so much.' Every once in a while it has to be redone because some moron feels the need to blemish a local landmark. There's only been two times I've ever taken a picture next to it both just on the spur of the moment, neither time retaking or enhancing the picture. They were almost exactly 4 years apart which gave me perspective on that I've gotten 4 more years of this little girl's life and of my own and of many people. The message was right behind me then and now. Even if everything goes horrible or wonderful in tomorrow's event or Tuesday's test, I think cancer is so far behind it can never come back, at least not to win. And that is why everyone mentioned here and a few others not mentioned at all is why cancer lost and why I'm thankful for all that. Because even if it all goes great/terrible, to them, to life, I love you so much.







Friday, May 26, 2017

Strangers Like Me

"Always remember that you are absolutely unique. Just like everyone else." Margaret Mead

What is conscious or subconscious is always a mystery to me, not every aspect of which I hope is ever solved. The dance between our natural wiring and our will power is fascinating. Nurturing our nature or fighting against it... like so much of the beauty of life is a fair question for most if not all of us. It occurs to me that we do it well individually but sometimes struggle with it in larger group settings.

Life continues for me. It must be getting near an MRI  because I've had formal events every weekend for over a month and then have at least 4 maybe till June 10th. (June 8th is when I get the results of one a couple of days before that). They've varied from road races to Spartans to bike rides. Therapeutic use of muscles to try to show the system that I am still alive no matter what's going on in my left temporal lobe. I've been taking this approach for over 6 years now and where it's hurting may be simply as aging. I still do it all and am still staying pretty competitive but the legs and system stay sore longer. It hurts enough to where I've had to start listening to country music to laugh it off, reminding myself that I'm not as good as I once was but I'm as good once as I ever was. Still the kid born 8/8/80 got a faster 10k recently than the exact same Sunshine run course a year ago and finished 8th over all. It may tell you the subconscious of me not accepting aging well that I've put away all age group winner trophies and now am just holding on to the ones I have placed outright.

One weekend event though that was tough on the second weekend of May wasn't because it was physically tough, thought it was its own challenge. I spent a weekend with First Descents, a great organization that I raised money for the last time I did the Boston Marathon. They help young adult cancer survivors have great, primarily outdoor adventures since their motto is out living it. We were out windsurfing, for most people it was their first time. They actually have regular adventures around Texas but this was the first time I joined them on a rare weekend without a race. The windsurfing was great but it was nowhere near my favorite part. There were moments where we laughed at silly things right from the start. Our intro was from a graduate student who had us all introduce ourselves and say what chore we didn't like and why. It's a group where we go by nicknames not proper names so my intro was 'my name is Rum and Coke. I don't like cleaning up my dog's poop because I don't do it often enough and then when I do it I wonder if I should do it less often or more often." Before you read the next sentence try that with your least favorite chore. Then you're supposed to do the exact same thing except replace the name of the chore with sex... Man did I pick the right 'chore'.

But there were moments were people talked about the physical struggles of cancer, some people who were actively going through recurrences. A couple of us who shared with each other how we talk about it with kids, how it affects relationships. Anyone whose ever spent a few minutes with me knows I talk too much but in these situations I talk less than anywhere, mostly making jokes to
alleviate the tension of the emotional reminders of it all. Humor remains my coping mechanism but so does running when emotionally uncomfortable. I ran pretty hard on the beach both days I was there on that relaxing weekend. But in both of the first descent events I've been to they have this ritual where everyone shares emotional things one on one with someone and then with the group. There's a phrasing that came out of several people, that what they appreciate about these weekends is to feel normal. It's something I often hear in cancer survivor groups, the places where to feel normal. I understand at some level... normal's a rare place for me, usually while I'm running or taking care of chores. But I personally never want to feel normal among cancer survivors. Perhaps it's because I so thoroughly despite having cancer that I want people to always fight it for it not feel normal. I may be like a solider who constantly re-enlists where the battle is the normal feeling while most of us, in that scenario, would much prefer the domestic life as to where things feel normal. My favorite people and moments on the trip were ones where no one was on their phone and we remembered that present company was very important. I lied a couple of times that weekend in the lie me, a guy with facial recognition issues tells the most often, 'yes I remember you.' Oddly enough a person who I spent a fair share of time talking to and who I have apparently have met more than a few times, I still wouldn't be able to pick out of  a crowd because they aren't on social media (this is where I usually study people's faces to remember them, something that if I did it in person would well creep anyone out). It was a reminder that even with a damaged memory and imperfect recollection, some people give you impressions to reminisce about. When we did the emotional sharing thing after everyone had genuine kumbaya type moments around a 'camp fire' and it got to me I was honest and said I hate this emotional stuff because it makes me face my humanity, something I struggle more to face than my mortality. I struggle with acknowledging the emotions and reality that an intense and yet relaxed weekend like that makes me focus on but I think I always come out physically and emotionally challenged, healthier and stronger for it. How can one not be grateful for that?

But I got back to home... and the room that had never had anything done to it, my previously unshared bedroom, continues to get better. I'm still amused that the nicest door in my house is a closet door but that led to the bathroom not looking as cool and it got some upgrades. The short version is that there's been more done to my house since Elaine moved in than had been done in years and there's a couple of things already planned. I'm a fan of the fact that most of them are things that are invisible to most people but primarily practical even if a little more polished. I joked with a  couple of guys while I was running about all this and they said well that's the cost of a woman's touch... with the double entendre fully intended.

But speaking of double, I did something I'd never done before. There have been several times where I have done the elite heat of a spartan and then headed back and done the finishing obstacles with
friends and family. I am intrigued by the fact the activity I've shared the most is one that I'm at best mediocre at in my viewpoint. But I've gotten to do it with cousins, my brother, my oldest friends, friends from crossfit, running, ultimate and of course Kiana. She's done two adult sprints where I did the elite heat and then went back and did it with her again. When she did the super last year, I just did it from start to finish with her. But this year, I did the men's elite heat competition (spatial orientation caused some issues and a few extra miles of running) and then went back and from scratch did it once again with Elaine. Perhaps because I didn't get lost, perhaps because her heat didn't have any lightning delays in the middle of it, perhaps since she was in front and I had a good view to chase, but ultimately the second joint wave was faster than the first one on my own. I guess that settles the argument of which one is the better half. I often make fun of the song 'one call away' about that superman has nothing on the guy since he's only one call away... wasn't the great thing about superman that you didn't have to call him? I feel alien enough but I am glad that during an entire Spartan Super we were never even an obstacle away.


I've also been asked to sit on a committee that's helping develop some things for the cancer institutes at the new medical school at the University of Texas, the first medical school built in America since before I was born. They are definitely open to a whole lot of new and innovative ideas and one of the things they are working on is a young adult cancer's clinic. The pediatric world has a few good places (as we should watch out for children more than anyone else). The older crowd does as well (while all are true, I've wondered if it's because there's more resources then, because cancer is more common at that time or because the fear of mortalities rises in most of us as we get closer to the end of life). But the young adult crowd is still much neglected. There are issues for young adults where they're trying to figure out life period much less when life throws a gigantic cancer curve ball and its hard to distinguish which is part of what. I never quite know why I get asked to help with these things because I certainly don't go in as a rubber stamp or a yes man. They obviously realized they still had more perspective to add because this was the second meeting and at the first they had no survivors on the committee; they had fixed it by the second meeting. Their was brilliance and compassion in there, genuine questions and genuine care. The ideas  flowed well. My contribution was sometimes speaking for the things that were under represented. There were 3 men in the room to a dozen or so women. This is often the case in cancer care events, the only place I see is more disproportional is at mom/dads events helping elementary kids events. It may say something about my gender in general but I've pointed it out at enough cancer events. It's gotten one CEO to say that I'm a good manbassador for that. I put minor energy into having an influence on that at school events but a lot more in cancer events because it's not like the people affected by cancer are that disproportionate neither in diagnosis or contacts. I pointed out as we talked about surveys that there are many people who will never fill out their survey, who should actively seek them in a place of their own.

I spent over 6 years as a juvenile probation officer where I did more home visits than were required legally speaking because there is something about recognizing what someone calls home and how much of it they make their own and how much of it is just a place to sleep. Most of the juveniles involved in the system are ones from single mom homes. Correlation doesn't mean causation in any aspect of life but I think that as I've found ways to show and share my manliness at home and not just in sports, I've become better at many things from family to cancer survivor to those sports themselves. I've got a long long way to go but what do you know even when I'm lost I keep moving and the moment I recognize I'm lost I try to get back on path.

While running with my bro-mance partner, I've wondered out loud about this imbalance of people wanting to feel both special and normal. He joked back that it was fine, I was never going to be
someone who was normal. Perhaps it's why I'm drawn things like the quote this blog started with that a college professor used to use a lot "You are unique just like everyone else." People who sign up for marathons, single fathers, brain cancer survivors, Spartans, heck my favorite sport is one that felt the need to show its inferiority/superiority complex by naming itself Ultimate. In an age where social media, regular media, and friendship circles have become far more enclosed echo chambers than I thing is good for any of us I keep trying to hear more voices. Perhaps it's because I see a gorgeous rainbow after hill repeats in the rain that I think diversity is a good thing. Like in nature there's some danger and some destruction in thinking it can be all encompassing but I think it has a much bigger range than I've dreamed up.

I got my first ticket in over a decade recently and went to driver's ed. Not knowing much about it I decided doing it in person was better than online for 6 hours. In simple honesty is the first time I've had to sit in a room for 6 hours with a diverse crowd where the common point is speeding. It's become an even more conscious effort to hang out with more people who we don't just have common interests like the parents at Kiana's school. Neither the defensive driving or those parenting events
have I wished I hadn't opened my mouth to answer certain questions. Kiana once in a a while gets in trouble at school for being condescending. Many of her great qualities I have no idea where she gets them, like having won all 3 of her UIL competitions this year, all improvements from last year. But her bad ones it probably comes from the person she literally looks up to most days during meals. But with her and with myself, and in an age where a person who disagrees with my political views is 'evil', we've been focused and I hope never lose that focus, on seeing beyond ourselves and our interests. Cancer, a huge and upcoming part of my life with a few medical appointments in early June. The reason it is so destructive to the system is because it only wants to take care of itself no matter the expense, ultimately killing the very host. There's a reason we want to and should get rid of it in all of it's forms. In seeing the uniqueness in everyone else. I try to teach both her and I that sometimes the things that make us feel strange which we try to feel normal should just be embraced because we really do all have more in common than we do apart. Feeding that healthiness is how you feed life and defeat abnormal growth, right?


'I want to know, can you show me?
I want to know about the strangers like me
Tell me more, please show me
Something is familiar
About the strangers like me'

So in cancer events or school events or sports events or defensive driving events, I hope I keep finding ways to like strangers and help strangers like me. Because I've learned that helps us get them closer to feeling like family.

Thursday, April 27, 2017

Hold On Hope

Well after a month of waiting for blood work and other results, they all came back as normal. Some of the things we measure like blood pressure actually came back as improved. One of the things that brought all these tests about is a piss poor development. The truth is that I have to pee more with the medication I'm on. I honestly don't notice it much during the day though I've had a few people make fun of me for the fact that almost without fail I usually pee between the warm up and the workouts of track and hill repeats. Its appeared to be getting worse in the last year mostly at night (this is where everyone is wondering what I usually do, why does anyone read this blog) so getting up at night 5 or 6 times.. well let's just say I've done far more fun things in the middle of the night. The question in the bloodwork was whether the brain was causing some hormones to be regulated unevenly; the answer was no. My grandfather everyone in a while asks about some of the things that have come from this brain surgery and these medications. In both regards to peeing too much at night and memory issues, he's said with a grin well I've got those problems too man. Who knew brain cancer with epilepsy and being in your 80's could cause similar problems... what if the kid born 8/8/80 who statistically is not supposed to make 40 gets to his 80's?!? What then?

It's a dance of believing in both hope and statistical probability. A few weeks ago I got to speak at an event where they opened up a new art exhibit in the Livestrong Headquarters of an installation of a big egg made out of wood from a project called Hero's Journey Art. It's a project designed for patients who go through clinical trials and their friends and family, people who are part of studies. I have never been part of a clinical trial but I am actually tracked in a  couple of studies. My brain will be donated to science whenever I die because they want to know what a brand new one looks like. One of the things I shared was what is the study signup, "what we learn here may never help you but we hope it will help others." The two closest friends I have made with this same type of tumor both had it grow unexpectedly, it's typical pattern ended up both being part of clinical trials. One did it as her and her husband were finally 6 or 7 years down the road talking about opening up to having kids and then found out the tumor grew. It went well for her but they decided it was probably most responsible/reasonable/I don't know what the right word is to not have kids. The other friend already had a wife and kids but the clinical trial didn't take with him. He died at home just a few months after the growth was discovered.

It's a tough journey being known for being a cancer survivor and choosing to be active in part of the community. I've done things with Livestrong, Imerman Angels, the Brain Power 5k, Head for the
Cure, First Descents, Voices Against Brain Cancer and the American Cancer Society. Most have been actually fairly minor though some have been sustained but because I know it can be a lonely journey, without exception I have kept friends and relationships from everyone. Without exception, I've seen people had resurgences. The bonding is at different levels, like all relationships but when you see people you love reach out in faith and hit walls, there's no way to not be angry. One of those people is someone who decided to reach out and go for the lottery for their first marathon, the New York Marathon, which this year lands on my 7th cancerversary. They got in but at their next appointment... there had been some regrowths and now they have been told to get their affairs in order because they have a few months left at best. That's just one of many examples I could tell you of people I've met personally and frankly some 4 letter words go through my mind every time. But as I said at that speech and well every speech almost I've ever given, I go with HOPE as my 4 letter word. The artist had a brick to give me and I thought great that's something Kiana can do as she was standing next to me and she's the artistic one. He would end up giving us both one and... well I knew it would take some more creativity than I used to.

I originally was going to simply get hope burned into it and then write along the sides some key phrases from my hope pile (hope is the thing with feathers, no such thing as false hope, and hope is my 4 letter word). Kiana was originally going to write a poem on it. But as we went and shopped for arts and crafts to use, we tweaked what we were going to do. Kiana made it a word Believe with her unique touches. I actually painted Hope with chalk paint in my favorite color, no one will write on it but I wanted to believe hope is where things and written and sometimes erased, but there's always capacity to write on more hope. I purposely didn't fill it solid but gave it imperfections and different textures in different parts. I gave it its own feather and somewhere in the middle literally put my fingerprint on it. Hope, rising above, rather than burned in is my thing with feathers.

Between the bloodwork and the final results (a full month), there were a few things that occurred. One was a simple thing, the AC on my car went out. In Texas... that's a problem you resolve quickly. For a couple of days I actually thought about getting another car rather than sinking money into this one being fixed. Some of that was just looking at how many adapters now come in cars so that I can play music with my iPhone or charge it etc etc... Some of it was practical that as Kiana gets older it seems when I'm taking her and her friends to an adventure putting things in my car has felt like a jigsaw puzzle and a bigger car might be useful. But some of it, as silly as it sounds, was just trying to commit to further down the future. Because for better or worse, in 6 and half years of brain cancer, I have yet to commit to anything past 1 MRI's. That's progress because for almost 5 years I honestly had no commitments ever past a single one of them. They were then and now scheduled around Kiana's semesters so if anything goes wrong the transition to a different school would be at a more organic time. But to take a car loan for a few years could be argued as a poor financial decision but it's also a simple belief that you're going to be around for those few years. In the end, oddly enough, it  may well have been medical issues that kept me from buying the car. I keep all of my paperwork from everything but I finished paying off the car while not allowed to drive 2 months into the brain cancer journey and I couldn't find the title. I ordered a new one but it takes 30 days to arrive so... I fixed the AC. But there was something that almost, almost felt right to believing a bit down the road.

But down the road the journey continues. There was an article written about me running the cap 10k shortly after I won the marathon. No media covered it this time or last time but both of those times were ones I cared about a whole lot more. Last year Kiana did it and it was the first time she broke an hour and my parents also joined us. This year Kiana did it and took almost 5 minutes of for a 51:29 speeding up for the last 3 miles with conviction. You can check out pictures of me here in a weight vest but there's a kid constantly in the way. But she wasn't the only one who got a PR that day, the other lady who is now part of the household, my girlfriend Elaine also ran her fastest 10k that day and was there waiting for us as we crossed the line. We have a little tradition in my house of always having the most recent bib up in the kitchen. It's always just been two but even as I write this it warms my heart for the first time ever to look up and see 3 which coincidentally have our names .

When your girlfriend moves in, everyone from old fashioned people like friends and say your mother, ask when the wedding is... none of that is planned but it sure makes me believe in Karma. In the modern age where we're a little more tolerant about these types of things, every time one of my friends got engaged, I'd ask if they were nervous about losing their virginity. So now my girlfriend lives with me and I get asked when I'm getting married. I caused awkwardness and now get some caused. Who says life isn't fair? But people keep asking how it's going and it's going very well. I feel like I'm sleeping better and some of my lumosity scores are better for the first time in too long.

Perhaps a key to that is it's been a little over 2 years since my heart rate reached what it has stayed at since, 42. My heart therefore has within it the answer to the ultimate question of life the universe and everything. Perhaps it's a coincidence, perhaps not that it wasn't till it got there that shortly afterwards when I would start dating Elaine. There are little things that have crossed my agenda since she moved in, the trees are about to get their first real work done since I moved in the house over 10 years ago. There are times when I say that my life has been on hold for so long but the truth is that when you're on hold, there should be a reason you're making the call. I've kept raising a kid but that's someone you hold as necessary but it's just because they are still growing their wings. Perhaps I've had too many areas of my life that when I'm honest weren't on hold but really on standstill. It's a tough balance to pretend like cancer is irrelevant or improbable to return when you've had to say goodbye to too many people. I think of a friend who moved into the college chaplaincy work said it was easier than his previous job because he got to do lots of weddings and not many funerals. I've been to too many hospices and funerals. I will never be grateful for cancer but I am absolutely grateful to have met those people no matter how painful it has been to say goodbye.

I'm never going to pretend like I'm immortal. I've got an MRI in only a few weeks but the truth is the George Clooney girls only ever made it between MRI's. Kiana's mother, my wife of 10 years, only made it through 3 and that was over only 6 months. It may be a strange thought but if Elaine is still here come June 8th, something I'd bet on, she will surpass anyone this hopeful romantic has ever allowed into that area of his life. Maybe that's why we still hold each other so well.

There is still in fact nothing and no one in my life that I have a substantial commitment more than two MRI's away. With heavy debts and heavy emotions, I don't think it's that unreasonable of a position to have put too much of life on hold. But with it, I am glad, thankful, relived that there have been people kind enough to hold me, and people who I've been fortunate enough to hold. I've even been listening to music like Buble's Hold on,

So hold on to me tight,
hold on to me tonight.
We are stronger here together,
than we could ever be alone.

It is these people and these relationships why even while some parts of life were on hold, I've held onto hope.

Monday, April 10, 2017

Hell In Every Religion

If anyone wonders where I developed some public speaking skills, it's because I was a preacher briefly in a previous life (that's a long story). But I do have a degree in religion and have read the texts of all the biggest world religions (The Torah, New Testament, Koran, the Bhagavad Gita, Dao de Jing, the Analects of Confucius, the Book of Mormon etc). I've also studied the various rituals at sacred services of each one. I've never done it locally but when traveling out and about I've actually participated in basically every one of the major religious rituals like Mass at Notre Dame and and the Vatican, Yoga as part of worship in India, Salah in India etc). I've done this somewhere between the life philosophy of don't knock it till you try it; you don't have to try it, just don't knock if if you don't (if you think a guy who picks up hitchhikers, where this blog derives the name doesn't also allow fervent people who want to share their faith into my home, well you've read me wrong). But mostly because in the ways in which humanity finds the sacred and the devout I want to try to understand what has left us looking to and beyond the stars and deep within ourselves, a dance no one I've ever met has fully mastered. Someone who has traveled with me a few times who would argue that it's more respectful to observe than to participate if you're not a full believer once gave me a tongue in cheek hard time and said what are you doing? With a nod and wink, I responded with 'I'm just covering my bases man.' They responded smiling and said, 'no you're going to hell in every religion.'

This is a week that is a big deal in the religion I'm most closely associated with, something I say neither too loud in here or anywhere in my life mostly because I don't want to embarrass any person whose faith rhymes with mine with my inadequate representation (I presume any Deity can handle it). But it's been an interesting couple of weeks and as I have shared them with some people, a few have handled it with the only ways we often handle that which we can't help. Some do it with a good hug, with a stiff drink, with a conversation with an offer of prayer. I've never prayed to 'beat cancer,' something that somehow usually refers to surviving it so I join people in all but the last one and tell them they're on their own if they want to do that since I assume if Someone is running the universe I hope They have some clue as to what they are doing. 

There have been some things going wrong with the system in the last few months. Nothing dramatic by my book but then again I've walked out of ambulances, put off brain surgery to run a marathon so maybe I don't do medical stuff with enough flair. Last year I only had 3 cancer appointments (or 6 depending on how you measure it, tests then results in my book is a single appointment). I was hoping 2017 would go as well. This year something is draining the system and so we did the typical bloodwork plus some extra tests (not all results are in yet). I had to do a urine test which led to an ultrasound (Kiana was not amused at my pregnancy jokes). I'm on a waiting list to see if organs are affected/swollen by the medication I'm on and we're trying some steroids which I'm not a fan of. I'm on a waiting list for a few more tests once the full results of these are in. It's not likely that cancer is growing just being on drugs for 6 years, pushing the system the way I do, aging or perhaps the combination of it all has been tough (the only possibility that it could be a direct brain cancer effect according to the doctor was if the tumor was growing on a certain section and pushing on some part of the brain that I can't remember and couldn't spell if I did).

The tests actually started before I went to the Final Four. It was actually a couple of days after I had spoken to the premed students for the 5th year in a row. This year two different professors had invited me to encourage students to do the Lonhorn Run 5k/10k. The speeches went well though I forgot one joke in the first one and the professor said that since they had a competition between them that if he lost he was blaming it on my missing joke. 

Bloodwork has varied with results always having been in the normal range even if some things had shown to be on the acceptable low or high end. The last MRI also shows some millimeters of growth on the brain tumor but the one thing that has been absolutely consistent for 3 years is that my resting heart has been 42, the answer to the question of life, the universe and everything. If nothing else, I dare dream this means my heart has arrived and stayed in the right place. 

The results actually came moments before the game started and if anyone wonders why I got more steals, finally made a shot, dove for the ball a few times, it's because the results required more tests and intense physical approach is how I deal with medical stress (I may also be a bit competitive). It's also why I hugged some of the people that had gotten there with a little more conviction. But a guy who still confesses those things more here than to anyone in person, I only told one person on the trip and even my girlfriend it took me a few days to say it aloud... but believe it or not both of those things are progress for me. We'll see where the tests go but there were some other events between the bloodwork and the final results and the impending tests.

Elaine's father came to visit on the 1st weekend we were both home since we started living together.
Call that a coincidence but I call that being a good dad no matter how much he may have objected to being called sir or Mr. Chung. He's also a long distance runner and while he's been running marathons since the year Elaine was born, he just ran his fastest one and qualified for Boston for the 1st time last month. We started the weekend with a good meal together where when the check came there was a contest as to who could grab it first. I'll leave that question not answered here but let's just also add that it was an even score by the time the weekend ended. Actually that was part of my favorite time in the weekend that we actually did this whole conversation thing the entire meal. It may say something about the age of our souls in there that while they are both engineers, I was the first of the 3 to get a smart phone a little over 5 years ago, Elaine only got it a couple of years ago and her dad still doesn't have one. We were just chatting and liking each other in person. 

It was fun to have 3 runners together on a University Campus all doing the 10k. I was definitely hurting right from the start and I'd forgotten my iPod so my usual music distraction/focus wasn't there. While I still beat most of the university students, I was not the first non student to finish and I knew that about half way. I kept trying to find a kick but it wasn't quite coming but with about a quarter mile to go, a student who was wrapping up the 5k (both had the same finish) said hey you came to class, finish strong. That made sure that I did. The finish line got even more meaningful when a college girl came up and said she had told her mom about me and about the races I had done together with my parents and my daughter. She had just finished the 5k and was going back to finish with her mom. While I've had some wins and some relatively close times, I haven't hit a single PR since I turned 36 and wondered a few times if it was time to call these races and speaking bits a good memory but a part of the past if that's where my credibility lied. Moments like that with those students make me think it's not quite time yet to hang up the shoes. Elaine would come in second female over all and 1st non student. The fact that she has PR'ed in the last couple of races she's done with me I had blown off since she's 25. But her dad is still doing it in his 60's, I mean at 29... so yeah its definitely not time to quit.

But none of the 3 of us were sit around type of people and we joined an urban scavenger hunt that afternoon that benefitted Wonders and Worries, an organization that helped me and Kiana be able to talk about cancer and it's side effects far better than I had done on my own even if it took me much too long to get around to doing it. It was a 4 hour scavenger hunt but before we got the clues I didn't know if it was one where it was who got it done first or one where it was impossible to get it all done and who did the most; it was the latter. This is why I sometimes struggle with the concept of eternal life and frankly prefer a more limited life; I'm a fan of choice and life certainly echoes that there are limits to that. If there weren't, would we value things as much? If death and time had no barriers, I think for many, most of us, perhaps I'm just speaking for myself would lose the urgency. I will never be grateful for cancer or it's lessons--I base my life philosophy on learn from other people's mistakes, you don't have enough time to make them all on your own--but I do think an awareness of the limits of time that come with being clued into our own mortality instead of in denial of it, I think that's good for us. 

So we set out to do strategy, 3 Boston Qualifiers figuring out clues all over town with history, with fun, with pop culture. I loved her dad's spirit not shy of eating an all condiments sandwich, or cleaning a strangers car window or learning to dap in front of the Texas Capitol. Elaine was ready to serenade a stranger; I hugged one. We ran all over town and 4 hours later we were nowhere dear done with the possibilities in there but we had a ridiculously good time. (If you're wondering how to see it just look up hashtag #wvush71 on instagram and twitter to see our adventures. If you want confirmation of just how competitive I am, we got rear ended in the middle of the contest and I said to Elaine okay you handle uploading while I deal with trading information). The combination of legs, brains, creativity and willingness stacked up well enough so that we took 1st place in the Inaugural Wonders and Worried Scavenger Hunt! 

I don't know what will happen with upcoming medical appointments or the MRI in less than 2 months. I hope her dad liked our adventures as much as I did. In one of my religious studies classes everyone had to write an essay that if given full choice which religion's heaven they would rather go to and which hell they would go to if they weren't going in the right direction. There were many answers, some incredibly creative. I certainly am not trying to convince anyone that my views on the universe are the only option which can save anyone. But I do believe what someone said before the civil war, what MLK quoted and what President Obama said as he headed out of office that the arc the universe bends toward justice. I do think the universe in the end is just but I hope and believe it gets there by Grace. For me, for most (all?) of us grace is harder but more necessary on the receiving end. My favorite portrait of someone who gets to see heaven and hell and what they see in hell is an abundance of delicious and nutritous food at a table but everyone is starving because the only way to reach it is with giant spoons and no one has elbows that bend and they all look miserable. When the same person sees heaven, the circumstances are exactly the same except that the people are happy and well fed because they're kind enough to feed each other. I'm not sure what the after life holds or like Queen says, I even dare of living forever. But tonight, after I get Kiana gets home from school, seems like a good night to cook and share a meal together. 

Wednesday, April 5, 2017

Unbustable

March Madness has a special place along my cancer journey. It was during selection Sunday in 2011 that I was recovering after brain surgery at Duke and if there's anywhere that college basketball has an impact it's with the Blue Devils. The excitement of hoping to repeat from the 2010 championship was there and for me it was a welcome distraction from the actual pain of cancer. There was a joy in watching people jump and shoot and dribble when I was struggling to walk for very long. Duke didn't repeat that year but without fail I have filled out at least one bracket with them every year since then, something that worked out well in 2015.

But last year Infiniti started a challenge where you could refill your brackets after every round and for every correct pick they would donate a dollar to the American Cancer Society. The games were in Houston and 14 of us got to be part of the two inaugural teams of Hardwood Heroes, designed for young adult cancer survivors. This year they moved to Phoenix and they chose 7 new local players and 7 of us were picked to return. For those of us returning, as one of the other survivors said we couldn't be more grateful to have this once in a lifetime opportunity--twice.

We arrived once again to work on drills, passing ones, shooting ones. There were short interviews and the photos to remember it all by. But all in all, it was what I see as the the meaning of life that kept coming out, the ability to connect not because of cancer but beyond it. It had disrupted our humanity but we were here to disrupt it back. There were stories of people who had gotten cancer as an infant with massive surgeries at a time they have no memory of because they were so young. Scars that had been huge as a child to where they were still visible but stretched. There were people who had lost the ability to have children of their own because cancer had come to them when they were children who weren't thinking far enough ahead of things like fertility preservation. There were 3 teammates who had lost a limb and it didn't stop them from going down the court, taking great shots, playing hard defense and in one of their cases Devon and I went diving to the floor for a ball... he beat me to it and won the possession.

There were teammates who had dealt with it more than once, reoccurrences, some too close each other and some years apart.. I've never been through that and as I listened to the stories it was tough to decide which one was easier to absorb. Some of us whose cancer was not fully removable who had to deal with it as a day to day aspect of life. The intensity that cancer had to deal with each of us showed on the court with no matter how far either team was ahead or behind, no one blinked on the intensity of their dribbling, passing, shooting, defense. We got to play two 12 minute halves and anyone watching saw the intensity that we had for life displayed up and down that court.

The theme for this year's fundraiser was Unbustable since you got to make new picks after every round. But like a March Madness bracket that doesn't mean you picked the wrong or right ones, it just means you got a round by round perspective. This seemed to echo many of the players life approach, cancer had made us rethink our picks. Sometimes that meant doubling down all the way to the end but often it made changing it due to unexpected upsets. There were people who had chosen to spend their careers in non profits for people with some of the issues that had come out of their cancer experiences, helping cancer organization and amputee organizations. There were others who were encouraged they had made the right choice and made it again.

What makes a bracket unbustable is not getting anything wrong... something that no one I know has ever completely mastered. What made my teammates unbustable is the ability to take the unexpected failure of something within our own systems, sometimes because of genetics or randomness and choose to reset, to take the unexpected and pick again with new options, with new information. It is perhaps fitting that we got to do it in Phoenix, a city with a name from a creature which rises it's own ashes. As people shared stories about what chemo, surgeries, radiation had left them without but the hope that got us through it, it was clear to me that we all rose up from those treatments and hospital beds with serious fortitude.

Infiniti got fans who were there for the games to take free throw shots and get money donated for
every one within 60 second. The highest person had made 16 and one of our own teammates, Lexi, made 13 within that time. Last year, Infiniti donated over $700k to the American Cancer Society through people's picks and they will do so again from the picks and these shots. There were of course formal thank you's from us to them and from the CBS broadcasters about this effort. But Infiniti makes cars that have safety features that save people's lives; undoubtedly they hear from many of those people but there are plenty who they never hear from. The good they do there will be echoed by what this donation will do. And there they have will hear from many people, myself included of how grateful we are for this chance of life. It's my sincere desire that the program can't go on forever because somewhere they were part of the road map that eliminated cancer altogether, that there will be somewhere in the future where cancer is so irrelevant because good donations led to proper research that helped cancer be part of all of humanity's collective memory, not just the Hardwood Heroes personal memories. Perhaps this game, that donation, those connections will extend to infinity and beyond.

We enjoyed watching the games each day but after both nights of spectatorship, some of us survivors also braved the desert heat to climb up mountains since none of us are built for sitting around. Out in Arizona, there is no way to completely escape the heat but we'd been through tougher or as June Cash might have put it, if you meet with darkness and strife, the sunny side we also may view. A local Livestrong leader was kind enough to join us and give us water for the way. There were places where each of us had to take it at different paces but we regularly waited for each other and certainly joined up at the peak. In a complete fortuitous coincide we had all worn our #unbustable shirts. As we took in the views from the top of camelback, it disproved the idea that it has to be lonely at the top.

Cancer messed with all of the Hardwood Heroes physical system individually. By extension it messed with our friends, families systems financially, mentally and emotionally. But we're still going; we're not anywhere near done. Those donations haven't even been formally given so the way we're busting cancer back nowhere near being finished. I dream when it's all said and done, somewhere it's actually cancer that's all said and done and that's for whom the road ends completely. But until that day, the spirit that Blue Ridge Sports, Infiniti and the American Cancer Society share, I hope that spirit continues. And if you watched the Hardwood Heroes on the court, cancer didn't end us. In fact when people thought we might have been busted, those shining moments on the court showed we were just getting started.









Tuesday, March 21, 2017

Wonder by Wonder

'A man grows most tired while standing still' -Chinese proverb

I've never had a bucket list. Don't get me wrong; I have a list of things I want to do while I am alive but it's much like my daily to do list that I write out each morning. It is a rare day that I accomplish it all because I like to reach high, what many have called over reaching. So on my life list it is long and ridiculous that most people don't think it's possible to get it done in a lifetime... I am not one of those people though it's not something I would wager much money on.

But I am sitting here, adjusting from switching night to day and then back in 8 days time and it's messing with my sleep. Kiana just got back from her first world wonder and my last and final one, the Great Wall of China. Maybe it's the time change and a restless night, maybe it's the surrealism but somewhere I am wondering if someone should just pinch me, maybe with chopsticks.

It actually came together ridiculously easily, using up the frequent flyer miles from the last few years to get there for under $100 a ticket. I had good company, Troy an executor of my will who I've been friends with over a decade, a guy who was there at the hospital shortly after my daughter was born, a guy who was there at the hospital shortly after the seizure before we even knew I had a tumor. There was my girlfriend, Elaine, appropriately enough a Chinese girl in the first time I've ever visited a country where I had no clue of the language nor had enough base to translate it (reading and writing 5 languages has helped in other countries) in our last trip together before she moves in. And there was Kiana, my 10 year old daughter getting to use a passport over a decade earlier than I had to cross to the other side of the world. My grandparents and parents were bold for  crossing a river to give us potential for a better future. Looks like so far, there's at least one measurable area where we keep echoing each other's boldness but perhaps the echo is one of those that gets louder not just fades into a whisper.

We didn't start at the Great Wall or Beijing in fact. We started at Shanghai running along the most modern city in the country. Jet lag/time change whatever you want to call it led to a 3 am run not too long after arrival while everyone else slept. Like most of my Facebook pictures which don't describe what's being shown with any great context or history, there was something about taking in the city just on its own, knowing that even though you were getting more details later, often beauty and structure can stand on its own merits, gorgeous even without quite adequate light. The Leon in me noticed there were often Lion statues.

When the official tours happened later I would get a little more context. I actually had noticed that they often came in similar pairs but there was an interesting difference, one was standing on a ball and the other had their paw over a cub. I would learn from our tour guide that this was a depiction of a lion family in the Chinese mind. The male lion was holding the ball as a way to show dominion and supremacy. The one holding the cub was the
female representing her raising the cub and thus the nurturing side of the culture. For over 6 years now, I've had a medical restriction keeping me from playing soccer. Like the marathon I would finish my last league before quitting (went out as co-ed champions). All this time I thought it was because my doctors were trying to be careful with head contact because of the seizures. Halfway around the world and over half a decade later, I realized that while it wasn't in a cookie, the universe had been kind enough to let me know my fortune was to let much of my supremacy go and that the strength of my legs and arms was to nurture that cub.


A few other pieces of the puzzle called my life came
together.  I was walking around with my bag that has 8 #8 bibs on it. Father's day was originally celebrated in China on 8/8 because it can be shortened to 'ba ba' which appropriately enough sounds like the informal word for father, an equivalent of daddy. It's things like this almost make me believe my life is scripted. But here I was on my way to my 8th world wonder and Kiana's first one in a country that highlighted the number 8 previously as father's day. It also sounds similar to fortune or luck and honestly the first day much less the rest of just trying to capture a bit of the way Kiana sees the world, or the other side of it, there may be people who are more fortunate or lucky than me, but I don't know or have heard of any of them.

We caught some of the magnificent culture and history but we also caught just some of the local things. We ate at places where we were the only foreigners. We took late night walks, played games in parks the the locals were playing. I was proud of the fact that I got exercise almost everyday, including a stair workout with Kiana overlooking a river. Yep I was proud of all that and then I saw a 70 year old doing things I couldn't even do when I was a teenager. Kiana jumped on the monkey bars after seeing that and made the other adults on the trip feel almost as inadequate.

Kiana had been given her own international camera to take pictures from her height, her perspective, the things she valued. If a picture is worth a thousand words, she was definitely the most chatty out of everyone in the group. There were different things that stuck out to each of us, some of the best memories ones you couldn't take pictures of or pictures don't do it justice. Some of the deserts and meals, a picture or video can't replicate the unique smell, the different taste, the atmosphere at large or small details. Some of the art at the museums you weren't allowed to have cameras in or at the kung fu show that Kiana was mesmerized when those guys moved with expert timing as fast as lightning.

Due to taking in 3 cities (Shanghai, Xian, Beijing) there was a lot of traveling by foot, plane, train, bike, boat and automobile (Kiana actually loved her first real train ride, an overnight one at that). But of course the moment of going up to the Great Wall, the excuse for the trip was a highlight. We tried foods neither of us had ever had but the moment that we were most nervous was the ski lift heading up there. I honestly wondered why the Great Wall had to be built at all there since it was such a steep mountain that I thought it would have been deterrent enough.

But once you got on that Wall, you realized that the deterrent was the steepness, one purposely built with uneven footing to keep horses from being able to be used on it and for ordinary men to struggle on it. When we got to the very top, our tour guide suggested we go to the left from the lift, that about 90% of customers did that because it was an easier walk. That's all it took for the people I love to choose to go to the right, the path less traveled by. As we headed down what was very steep stairs and ridges, we realized that whatever goes down must come up and if you're struggling with stairs on the way down... It was on our last full day there so we knew that the next day there was going to be plenty of sitting besides I remembered the Chinese proverb I started with here, a man grows most tired by sitting still. Now I've ran to, around or on every single world wonder I've ever been to. So has Kiana :).

We saw lots of different places where people throw coins in to make a prayer or a wish or a hope. Mostly our change in coins was given to people who needed it far more than we will. A couple of those moments just like a couple of the foods she 'got' to try intimidated Kiana but I wanted her to take in the full experience, reminded of what Stevenson said that there are no foreign lands, it is the traveler only who is foreign. There was however one blatant exception to the coin usage, among the wishing well there was one where it was supposed that if you threw it in the center you were gong to have a long life. I've divided my life into Part I, pre cancer and Part II, post cancer. It was on the second shot that the coin landed dead center.  I'm not superstitious but I am a little bit stitious so... here's hoping.

Actually one of the most impressive things we saw was in a Lama Temple a gigantic statute of Maitreya Buddha carved from a single pice of White Sandalwood. Now the Maitreya Buddha is considered the 'future Buddha' and in most artistic depictions he is depicted as sitting, I suppose it's a way of showing he's abiding his time. It warmed my heart to see that the biggest one I've ever seen was portrayed as standing and I dared dream that whoever carved it knew the future of dharma and karma are for those who are standing and ready to go.

For a few years now, to close friends, I've said that I could use a few days that were the opposite of 'Cheers.' I wanted to go to a place where no one knew my name and couldn't care less I came. In a country of over a billion people, I wasn't a cancer guy, just a tourist with a great friend, a great girlfriend, a great daughter. It was a 'wonder-ful' reprieve where I got to be 'cancer' free for a few days, with people who would know me and love me with or without the disease and who I hope we will be part of each other's lives no matter how many years any of us have left. The only reminders were pills I take twice a day, the Livestrong band I choose to constantly wear and the little things I saw where I made connections, great memories made in China. It was a good Sabbatical but the timing of a Sabbatical is after work. I believe it's to reflect on the work, to reconnect with Who and what got you here and to prepare for things that lie ahead. Of course our idea of rest was to be moving all day but I hope Kiana learned a lesson I lived by for a while, forgot for a bit and took me a few years to get back to. Yes, the official World Wonders are part of the past but the number of things I still dream of is ones I couldn't get to in all of a lifetime but I'm going to keep dreaming, not accepting that reality, going to bed with the same dream, the same that I had on the flight home from China after a phenomenal trip, perhaps one that was somewhere in my subconscious even during some dark days and nights of the last few years. Is is the thought that keeps me going, keeps me standing and moving, breathing, writing, living 'what a wonderful thought it is that some of the best days of our lives haven't happened yet."