Wednesday, March 30, 2016

Smell The Color 9

This blog started, stayed and will be till it's end a simple thing, a boy with a damaged memory trying to remember life in real time, a diary (I mean journal I'm obviously way too manly for a diary) that happened to be online because in the age of the internet I could write to it or access it from anywhere.  It usually focuses around brain cancer and the changes and side effects that have come that I would not have been able to guess, if my life depended on it. Fortunate and thankful, what it is my life depends on, it's still working.

Some of the things that don't surprise other people, they still surprise me. I won a 5k in Houston recently; it was the inaugural one of the Seabrook series. I've won races before and I dare dream I'll win them again though the last race that I "gave up" the lead on, one particular element stung. So even though I've managed to win races since 3rd grade into my mid 30's, never once had I broken tape. Not once but I'm not bitter. I mean it's not like I noticed back in that race in January that I had less most of the way that the actual winner had broken tape... Or that race where I got out kicked last year that the winner broke tape within my view. Or that in other races I'd been that the pictures of the winners was always with them breaking tape. The closest I'd ever gotten to the tape was holding it once while was someone was crossing. Not all races have tape, I'm not sure if its the majority or minority of races that use it but usually even when I win races I don't do anything "triumphant" until after the race not across the finish line. But in Houston they had tape as I crossed and I saw it with less than a tenth of a mile to go and I pumped my arms up in a fashioned that showed that breaking tape was something I'd given enough emotion to garner an entire paragraph in this blog. And not only was that the coolest thing because it was an inaugural race and I was the first winner of it ever, they had planned to give it to the winner and it now sits in my home though I haven't figured out a way to put it up.

Still that was only the first of 3 races for the weekend, a feat I'd never even attempted before, with the races doubling up distance each day. The next day was a half marathon relay where I bonded even more with a girl from the Austin Runner's Club. I had the second leg and we were in second place by a few minutes by when I started, a gap I thought I couldn't make up (I also wasn't sure what place we were in but I knew we were in at least second). The watch is never quite my motivator, it's beating people but since the course was a double loop, there were people all along the course to pass and that serve as inspiration for perspiration. I gunned a little  faster than I ever have on similar distances on the road or trail. We would eke out the half marathon relay victory over 2 brothers that were 13 and 11. There was no tape the second day to break so the lack of tape might have inspired us to get a little cheeky after our victory.

Still having gunned to that left the legs hurting and realizing I was going to be running more than those two days combined for a half marathon. I had two goals and a dream, the goals were beating our joint time on my own and beating my fastest half marathon with a stroller (1:23.08). The dream was to get my faster half marathon ever but I knew with burning legs that might be pushing. I ended up 12th with a 1:22.58 and an age group win and managed to pass 3 people in the later part of the race. I was afraid I'd fly and die or crash and burn but turns out that there was still something in the legs. I got to speak at both the finish line and the awards presentation. Since it was a St. Paddy's themed half marathon I changed into my running kilt. To answer an age old question, if you're wondering what was underneath the kilt, it was my running shoes and the legs that had gotten me to 3 trophies and medals in 3 days!

Still I came back home and realized that despite the 3 races it still wasn't a full marathon distance for the weekend so when Kiana got home from spring break with her mom, we finished it up. Then we got back into the groove of going to school where for the 3rd quarter this year, she would once again get straight A's and perfect attendance. So we're both still showing up. They get a gift certificate to a Tex-Mex place for straight A's and I am amused cause when I got straight A's, I got Mexican food too but mine was my mom's home cooked and with no offense meant to anyone, my mom's way better.

I couldn't help but reflect that with 3 races in 3 days (and I kid you not the room we stayed in was 333) I also had 3 speaking engagements in less than a week. Apparently all the skills I needed for this stage in my life, running and talking about my life, I had by 3rd grade. The third speaking engagement was the most formal at a fundraising dinner for Camp Kesem. It's a camp for children of parents who had cancer, some of them orphaned by it. When someone suggested sending Kiana to it, I blew it off. One was the part of not wanting to say on my deathbed of "I wish I'd spent more time with my kid." I never went to camp as a kid but I figured that the right developmental age for my little girl to by away from home and not be able to call or write was about the time she'll be old enough to have a boyfriend, say 20 or so. She loved it when she went and missed me so much that the first thing she said when she got back was if she could go back the next year. The speech was well received but despite me getting invited still to speak at places, there is the reality check that this was the first speech Kiana had been to in a while and she, like she often does, brought a book with her (old school still giving her books instead of my iPhone). It certainly keeps things in checked that she asked that if my speech was boring if she could read during it... To my credit, she did not get the book out while I was talking but that may be because her question ended up being my opener which got lots of laughs from the audience. From Kiana it also got me a smile (albeit if you know her it was one of those glaring smiles... she's learning early). It was a formal dinner so it was the first time we got to dress up together in a  bit and showing she's already got a better sense of fashion than me, she wanted to make sure my outfit coordinated with her.

That still may not have been the biggest surprise of the weekend. I hosted a playdate with a few of her friends, something that just kind of came together after school. I worry about many things about Kiana but one is definitely that she's an only child with no family in town. My mom is the oldest of
12 and I am one of 3 and there's a social development that comes from family and friends your age that can't come up no matter how good of a parent you are. It was easter weekend so I hid eggs (being called a master egg hider by 2 nine year olds was a serious compliment since well 9 year olds tell you straight up things like when they are bored at speeches). But the one that took the cake (or earned them chocolate) was that we had this new rasberry nail thing that everyone single one of the 4 little girls called the most fun nail thing they had ever done! I never though I'd be hosting a nail salon with 4 little girls  at my house period (much less enjoying it) nor it being called the best one and by one little girl's account something that their mom had been talking about doing and she was glad to finally have the chance. I didn't do my own nails (I only do my toes with Kiana and this was finger nails) and there are certainly a few dads and friends who would think that the activity I chose to do was a nail salon reflected the damage in my brain but I dare dream it's the growth of the creativity in my heart.

So Easter was a good weekend with a chance to reflect on New and Renewed Life and that at least for now, keeping all my eggs in one basket hasn't gone too badly. There have been a few things that have come since then that are still blowing my mind. I am a boy who had never called in sick in his entire life... had missed 5 days for chicken pox from Kindergarten through college and then got a cancer that has no known dietary, lifestyle, genetic or environmental component. The things that have come from it, both good and bad are ones I would have never guessed.

But the strange life continues as this weekend I'm heading to Houston for the 4th time this year to be part of the Final Four weekend. Infinite is donating up to $700K for people's pick to the American Cancer Society. There will be 14 cancer survivors playing against each other as part of the weekend and then we get to attend the game. We had tryouts in February and if you check out the details, you can see during the selection process that I am the first one announced, which if you watch the game will be inversely proportionate to the talent on the field. I don't know for sure but I'd bet more money than I have on any on any bracket that it's because I was the last one picked :). Still,  since I was at Duke during March Madness, that's when I started following college ball, there's something cool about getting to be there as both a part of it, as a fundraiser against cancer, and as a spectator.

Yesterday I did an interview locally for it and another one with Nike about running. Today I have another one of those interviews and and I'm also speaking to UT premed students for the 4th year in a row about running more (I always want to sneak in hey by the way go cure cancer along the way). I hope that none of them have heard me each year because it's essentially the same story with a few minor tweaks and updates and some new jokes (besides do we really want doctors that take a class 4 times?!?). This is my 8th time speaking at the University of Texas, in 5 different buildings in 4 years. Yet in the middle of all these talks and interviews, I've also been on the phone quite a bit appealing an insurance claim. Cancer has strange side effects.

I am incredibly thankful to still be standing... daring to dream it's because I haven't been standing still. But it's hard to configure or reconfigure the emotions of thankfulness, guilty and responsibility when I'm visiting friends in hospice care who are dying of cancer, most of which I met because of cancer and way too many whose prognosis were better. I've been to too many of those visits, though on those I've never taken Kiana. I think and hope that I had been preparing her if my time came when oddly enough the first person whose death she has to experience was a few days ago and it was her maternal grandfather who passed away of cancer. We sat and talked about it with a game where we've playing more and more, backgammon, a game where strategy and chance and foresight all matter and nothing ever reigns consistently supreme. But in the best way, I tried to encourage her that sharing emotions anger, hurt, sadness were all okay. Those emotions are useful and serve a purpose they just have to be channeled correctly. But this was coming from me a  guy who still often hides (it it hides or experiences) his emotions in running, in music, in this blog, in a nakedness that wants to be seen but is afraid it may be too much.

There's times you want to cry out to the universe or pray and try to deduce it to logic, which cannot be done. It's one of those things that if you spend too much time thinking about you'll lose your mind, even more than I already have. Still I also believe that if you don't spend some time reflecting on it, you may well lose your soul. Trying to make sense of any or all of this is like trying to smell the color 9. You may say that 9's not a color and even if it were you can't smell a color which is my point exactly. But despite the strangeness of life in general and mine in specific, I am infinitely thankful that for me that the secret to having it all is appreciating all the life that I do have.


Sunday, March 13, 2016

Deus Ex Machina

Take it from a guy with a damaged one, memory used to be a thing that was all alone in the moonlight, where you dreamt of the old days and thought life was beautiful then. Then humanity  got more efficient with writing, then drawing, then photography. Now in the modern age of social media, remembering anniversaries or birthdays has gotten easier as we get literally prompted to it. However even with a scarred temporal lobe and a not quite there hippocampus, there are days that despite having very little recollection of them, they are still unforgettable.

Just a few days ago it was 5 years ago since brain surgery. I don't recall honestly anything after 'waking up' but the humor coping mechanism was there before the surgery with the joke of "I'm going to give you a piece of my mind" to the neurosurgery team about half an hour before. Before counting down as they put in anesthesia, knowing that having someone slice up my brain was the highest chance of death I'd ever had on any given day since birth, I said what can be construed as a joke, or a prayer or a fear. Just before they injected in what would put me out, I smiled a fearful smile and said, "into your hands I commend my spirit."

I thought the fact that having put off brain surgery and qualifying for Boston was a good story, a good way to go out. There would be some physical therapy and neurological stuff but the hardest things were yet to come. I won't forget the date March 3, 2011 but when Facebook reminded me of it, I made it a point to reach out to the friends and family who had been kind enough to come out to Duke. I'm proud to say that with rare exception they are all people who I am still regularly in contact with whether they live near or not. And then I emailed the guy who actually cut me up, Dr. Allan Friedman to thank him. Like before he could bill me for something, he just wrote back and we traded some emails as humans that were somehow a doctor and his patient. I send him an old fashion Christmas card every year but I also sent him a picture of Kiana's latest 5k's. One of them may show why this kid has gone over two years without having a race that wasn't a PR. It's a finish line picture from the Paramount 5k. This the race I've done 3 years instead of the marathon that I put off surgery for because well while running is a solitary sport in many ways, I hope Kiana learns a lesson earlier than I did which is the while you have to do most of life alone, when you  have good connections, it's improved by doing it alone together. When the doctor asked for her time, Dr. Friedman responded with that her PR is now better than his. I've long joked that this whole brain cancer journey would be worth it if Kiana became a brain surgeon. Hmm, she's measurably already better in one way at 9 years of age, and in several others at least in her dad's eyes.

I shared with him the beauty of life that continues and that I still am trying to be like the one leper. Because somehow among the other memory feeds from March are that I went to Beaumont and won a marathon a little over 3 years ago, we talked about some of the running and things that have come from then. Two years ago, I went back on my own and won the half. This year I went back and ran next to Kiana who once again Pr'ed. The finish line picture wasn't that different, I was behind her looking tired and she looked happy to be at the finish line. But while this one would garnish far less attention from most people and no media, it garnished just as much affection between Kiana and I. In my book that's what counts most. In both of those races she would place in her age group, 3rd and 2nd respectively. Kid's going to have to get a proper coach someday. She's literally flying in both those pictures, with her feet seeming to not touch the ground.

I'm a chess coach at Kiana's school but this is only my 2nd year doing it because when this all started when you go through over 2 years without a full month break from a medical appointment... you stop thinking out more than a move in advance. But I think no matter what has come or will, the best choice of my life was to recognize that parenting would be my most important privilege and responsibility. It was a reassuring award that when she took her qualifying test for chess where only the top students would advance to the competition, she saw me grading it and didn't ask how she did. She knew her dad wouldn't tell her any sooner than the week everyone else had to wait. She by the way got the highest score and advances (she knows the latter, not the former). Good to see that we've both started thinking a little bit about the long game.

I've watched too many people die with the same diagnosis as me to not stay keenly aware of both the beauty and fragility of life. But when we're 3 months into 2016 with zero medical appointments and still almost as many till the next one, I breathe a little easier. I've been reading "The Whole Brain Child" and it's comforting that her neurobiological development is taking more of my thought than the disease of my brain.

We're still going and not intending to ease up anytime soon.  Yesterday I did my first Spartan race of the year competing against some family (though I beat them all, this was the first time that any of them were ahead of me at some point in the course, 2 of them in fact!). Then I did a second lap right next to my oldest friend who we've known each other since I was 8 and she was 9. Our kids did a Spartan kids race together last year and now so have we side by side... Ahh the circle of life and it moves us all.  I'm doing 3 races this weekend back to back to back, a new feat that's got me intimidated, 5k Friday, half marathon relay with the Bond girl Saturday, half on my own Sunday.  Kiana's got another 10k and Spartan coming up both in April and I'll be right there next to her. 

If you'd ask me to predict my life from brain surgery 5 years ago to now, I would have gotten it all wrong. If you'd asked me to predict my life from signing up for a marathon with a stroller years ago till now, I would have gotten it all wrong. Honestly, I would not have bet I'd still be standing but if nothing else I dare dream it's because I haven't been standing still. Perhaps just as importantly it's because even when moving, I've chosen to not do it alone, being committed to that relationships are the most important part of my life. I got to return to New York as well recently (now Beaumont and New York are both places I've been to both more than Duke for medical appointments not just period but since brain surgery!; that may seem a strange thing to note but to me, it keeps one more way in which life not cancer is winning).


The title of today's blog literally translates as God from the machinery. It is usually a reference to an unexpected power or event saving a seemingly hopeless situation, especially as a contrived plot device in a play or novel. There are days that I don't quite understand how life has been so kind and strange and normal in odd circumstances. But while nothing that I know of lasts forever, I am glad to be waking up each day to see that hope still prevails. Or as Van Gogh said I know nothing with certainty but the sight of the stars makes me dream.