I Had A Ball

When Kiana was 3 years old, I asked her what she wanted to be when she grew up and she answered a princess. I let her know there was no such thing as princesses anymore and got thoroughly reprimanded by several people. Tonight Kiana and I went to our first ball, the Wonders and Worries one. She got her face painted and wore a new princess like dress for it and picked out my matching tux outfit and in preparation to make her high maintenance, it was the most time that had been spent on her hair before going, mostly by my cousin.

I’d been told there are “first” moments that make you emotional like the first day of school, first word (dada), first steps and they all have without exception. I took six weeks off to stay home with her while her mother went back to work, something that I encourage every father to do. But I didn’t have a first ball on my agenda and it was great to dance, eat, laugh and play with her. There were moments throughout the night where the same type of emotions showed up. It was a special night (and the lines were also shorter) and they had our favorite ice cream out, Amy’s Mexican Vanilla so unlike usual, we took the attitude that Life is Short so we ate dessert first.

My Livestrong bracelet never comes off (and I still have the original) and hers use to be constantly on but a 5 year old regularly tears them. Still, tonight she wore it as she does on occasion as an anklet. While it is now a separate organization and have expanded their mission (http://www.wondersandworries.org/), it made my day to learn that this organization was the very first community assistance grant funded by Livestrong. Over the last year with less than a handful of exceptions, I’ve only gotten babysitters to be able to exercise (which frankly keeps me sane in the midst of all this and also gives me the energy to keep up with a 5 year old). Part of it was to give both Kiana and I some sense of stability in the midst of all the upheaval; part of it was because no one says on their death bed, I wish I’d spent less time with my kids. I have raised some money for Livestrong and while I’ve heard some of the criticism of their founder and their organization, learning today for the first time that was their first partnership, it makes me absolutely believe that they have their priorities straight. I think tonight ensured I have drank the Livestrong yellow Koolaid permanently.

As I was getting ready I was listening to a song I’ve referred to on here (go listen at http://www.youtube.com/watch?v=nrWMBC6yoME&ob=av2e) and it was my favorite of the evening and most emotional moment when this was played and we got to dance to this at the ball (though she would say afterwards that her favorite part was when we played in the balloon castle together).

I went to her school’s work day yesterday, still never having missed any of those. I keep my century bike training up first thing in the morning and then Kiana and I are going to the pool. And we’re still watering the trees that she picked out on the Lorax. It helps that she's cute and energetic so adolescence scares me but I hope to get to watch it. There was a moment during the ball where we wrote letters that we mailed to them. It was much longer than that and even someone who is as public as I am will keep some of those things with just her I wrote her about what she asked once upon and told her I was wrong two years ago.  When I took her to Sonoma, we bought a wine at her first winery that I hope to give to her on her 21st birthday (because of course she won't possibly have drank before then). But it will be accompanied by this letter and in it, I admit there are still princesses and maybe this is no fairy tale and I rule no country. Still Kiana’s definitely the princess of all my best emotions and with this girl, there’s never going to be a moat to protect anything. 

I Could Not Stop

I work for the government at the County Level. Which government does some great things, it rarely does them efficiently and some things it has to do keep people “freshly tuned”. And so, like today, there is some training which I have to sit through annually which some presenters do freshly but others just trudge you through the day.  Usually on those days, I simply take some classic poetry that I memorized and find a way to humorously rewrite them. Having recently been to Walden Pond, I found one that I wrote a few years ago:

Apologies to Thoreau's Walden Pond

I went to the home to live assistedly
To sucky my meals, wells, through a straw.
So that when it came time for me to die
No one would learn I had just peed.

Long before I knew I had any health issues I was sitting there making fun of possibly having to live assisted death and so it was interesting/worrisome to find that mock poem on the same day that I got the long term care insurance billing. As long as I can hold for 90 more days without needing it, I’ll be eligible. Since I will never again be eligible for short or long term insurance, that’s somehow relieving.

But I also wrote another one that day with regards to another poem which connected both running and death and it felt a bit odd to find this one:

Apologies to Emily Dickison's Because I Could not Stop for death:

Because I could not stop for breath
The 10 K Stopped for me
The thought of being overwhelmed
It Ended concretely

Today I sat there and argued with my insurance for over an hour over 3 different things that my doctors have recommended and my insurance won’t cover.  They didn’t budge on any of them and having done this a year ago at the end when “quick resolutions” lady (the 4^th person I’d gotten transferred to) said to close the phone call, “Is there any other way I can help you today? “ I annoyingly and annoyed said: “Um, today you haven’t helped me at all.” I apologized afterwards but that was less than classy.

Yesterday I attended a Livestrong class of Cancer and Finances… Learned some good lessons and it also reminded me that while that things are never so bad they can’t be worse.  My medical bills are starting to rise again but there was someone there who had met their $10,000 deductible by the second week of January. There was a business owner and now didn’t have the energy to keep running their own business because of the chemotherapy.  There was a moment last summer after half my household income was gone when I thought about blowing off the Boston Marathon and just getting a second job that I could do when I didn’t have Kiana. Then I thought about doing it after the Boston Marathon…and now I’ve put off considering getting that second job until the Century Ride is over. But I also don’t know that I want to be working just to stay alive and then miss life itself.  It’s a very frustrating moment trying to decide whether or not to keep doing things like races or just buckle down and pay medical bills which apparently can come up unexpectedly even after they’ve come up expectedly.

Still after I got Kiana to bed last night, I was on a bike stand someone lent me on my own bike (not nearly as cool as the Mellow Johnny’s lent to me also it turns out if the front tire is flat cause you haven’t used it in so long it doesn’t matter because you only use the back one). I sat there pedaling away for an hour and unlike real cycling there is no coasting, all while doing the brain rehab on my ipad. Today I did a hill workout and went from there to an MRI which I’ve just finished analyzing because I know how to read them… oh wait I don’t. The assistants are still amused that I fall asleep during the MRI (apparently some people get claustrophic and need something injected to calm them down before hand). Yet while I fall asleep during that, I get all panicky when they are about to put a needle in me and they have to remind me to breathe. Tonight I joked with them that come on now, no one has ever died from a lack of breathing…

Speaking of dying, Emily Dickinson’s actual poem is

Because I could not stop for Death,
He kindly stopped for me;
The carriage held but just ourselves
And Immortality.

We slowly drove, he knew no haste,
And I had put away
My labor, and my leisure too,
For his civility.

On my clearer moments,  which thankfully is still most of them, I appreciate and realize while my  current health insurance isn’t great (apparently none are), I am infinitely grateful to be where I am at, which is alive. The Boston Marathon weather wasn’t all I could have dreamed of but I got to run the Boston Marathon! And the point that was never negotiable with me was not getting across the finish line. I won’t stop for death and when it stops for me, I hope Dickinson’s right and that it does so kindly and civilly. But until then… I’m not stopping. 

First Steps

The first time I ever kissed a girl I was 14 or 15 and let’s say that while she was my first, I wasn’t her first. She looked up at me and said, “You don’t do this very often do you?” And to my credit/discredit, my reaction was “Well, you can teach me.” And she did. We’ll get back to that.

I have started the cycling training for the 100 mile bike ride and biked more in 3 days than in my heaviest running week ever. It’s a different game but I’ve been just following what Chris Brewer from Livestrong has been telling me to do which interestingly enough he’s made it more about timetime in the saddle than miles covered. I’ve made some rookie mistakes like calling it biking instead of cycling. I also didn’t realize the time and because of being in a hurry had to wear the gear to pick up Kiana and go to Costco after… less socially accepted than running gear.Another cancer survivor volunteered to show me how to fix a flat tire quickly with very few tools and showed me all types of things about bicycles that I never knew I never knew. It is interesting as I put on the gear that where it’s padded (what’s the political correct way to say crotch) as I take these first steps, it feels like wearing a diaper. On this entire cycling adventure, I am just going to do like kissing that first girl and just take direction from someone with more experience. I can’t imagine it will be as fun but I'm still excited about it. I am amused that people have encouraged me to shave my legs and get a pedicure for these things. As I get more athletic, I am encouraged to become more metro. I am not sure I have enough security to do either. On the plus side, I’ve not fallen yet despite those clip in shoes that I know nothing about.

But I’ve also got an MRI on Thursday once again doing it at 9:00 PM so I won’t have to miss work or miss free time when Kiana’s awake, trying simultaneously to save sick hours for if they are ever necessary and not miss time with her. And then I have some follow up with the neurologist. The bloodwork from my collapsing the insurance denied and of course, the neuropsychological rehab ended up getting denied again but they said I was welcome, like other things they’ve let me do, to pay for it out of pocket . Tonight I did the marathon's trash run where I was asked to lead people on picking up trash on the course. On Wednesday, I am going to Livestrong’s fancer and cancer class and seeing if I can pick up any tips but it seems that like some other things I appealed, this is going to be hitting a wall. And on Friday, I sit in a photoshoot where I’ve been asked to get a haircut to highlight the scar and bring the race bibs. My life is strange. I don’t know if I’ll ever end up with anyone again but if I do, it has to be someone who gets the Lyrics from David Cook’s life on the moon ( http://www.youtube.com/watch?v=s9d52h5gXl0 ). I am not sure such a girl exists but if she does I’m happy to let her teach me how to kiss her

Despite all that, I guess I'll take life. At the end of the week, Kiana’s school has her biannual workday and I’ll be there and I've still been luck enough not to miss any. Her and I have the Wonders and Worries ball Saturday night. And I always say that it’s against my religion to have bad days and that I rarely sin. But just because most days are good doesn’t mean that they are all great. I love dancing always but this first is one that the that princess and I are very excited about it. Even got her a new dress for it. That day is going to be one of the great ones and I imagine it will mean far more than the first marathon or that first kiss.

Who Knows?

I regularly get people who pray with me and for me. There have been many Bible verses sent to me over this course as well as other sacred texts. Because of the fact that I got 3:16 on my first marathon after the surgery, there has been a suggestion that it was someone watching over me and I should become the Tim Tebow of running; I am not quite sure what that means. But a text that has been quoted to me more than once has been the one from Esther when she had to decide to put her own life at risk in order to save some people: “Who knows if you were placed here for such a time as this?” Without exception everyone who has quoted it has suggested that I was given brain cancer to help other people with it or other medical issues. I don’t know what to say to that other than to remind people that Esther is the only book in the Bible that doesn’t have the name of God anywhere in it and that it begins with who knows. And to be perfectly honest, I have never once prayed to be cured of cancer and I’ve shared that with a few people who point out that they do enough praying for both of us. I’ve never volunteered this to anyone with cancer who I was talking to but always answered it honestly. I was fairly heartbroken that one of the first people I talked to last summer passed away earlier this week.  I’ve prayed plenty in the last 18 months but I figured the guy who runs the universe has better people to help. I prayed plenty that my marriage would work out but of course if someone is running the universe, they would be worthy very little if they overran free will. Even though I meet with a minister each week who always asks what to pray with me for, I’ve never asked once for him to pray for me to be healed.

I start training for that 100 mile bike ride now and have already registered for the Brainpower5k (to register or donate go to brainpower5k.com). And I am considering considering (yes that’s meant to be repeated) getting back into that dating scene in some form or another but like that 100 mile bike ride acknowledging that while I have some basic concept, I really don’t know what I’m doing. The mental rehab is about to start and on the days I’m honest with myself, I realize that the reason I say no to many things is just pride. Someone in my running group has offered me a scholarship for my ambulance bill at the work out if I give it to him and I haven’t. Like the tournaments that were thrown and the medical bills that were written off, I’ve not done a good job in taking much help with anything that doesn’t have to do with Kiana.

I’ve started working on what I want my life part II birth certificate to look like, see picture above (if anyone is really good with arts and crafts, please please help me. ) It has the first race I did which I somehow got bib 911, the Livestrong Marathons (bib 8!) and 5k, the brain power 5k, the turkey trot, the first race I ever did in the stroller division and the Boston Marathon, the first race I ever hugged that beautiful princess Kiana. I want to help these causes but let me be clear that I don’t know if this is why I’m alive or what I was meant to do. I wish the path was clear on how to deal with my life in any area really. I get emails from Kiana’s mom about things lots of little and big things I did wrong during the marriage and can’t quite make sense on why I’m getting those a year later if she’s so happy with this new guy now…

I don’t know what’s coming. Neither does anyone else. But like JFK, I want to take the attitude that God’s work on earth must be our own.  And so yeah, who knows if I was placed here for such a time as this? I don’t know but I’m going to do what I can.  When I was a preacher, I used to say, rather than spend a whole lot of time trying to figure out what God’s will is for your life, figure out God’s will and put your life in order. I think whoever runs the universe wants us to help each other, wants us to be good parents, wants us to try to be healthy and I’m trying to do accordingly but who knows?  But I’ll work towards that during such a time as this.

When The Time Came

When I decided to get the surgery, there was no clear way to know if that was the correct decision. Human psychology is such that we usually end up decided that was happened was what was supposed to happen. I'm a hopeless romantic and so I like the sentiment but I know that's simply just not true, it's just how we make ourselves feel better. While being in Boston has been great, a friend wondered since I mentioned others being disappointed in the last entry, if I was. Of course, I'm disappointed in the weather and that I couldn't leave it all out there but being the cheesy tourist and wearing my Boston Marathon shirt around town yesterday, I've yet to meet one person who left it all out there and had a good time on either the clock or mentally. Everyone of them who did that had been here before and who knows if I ever will get to be back. I met a few others who had taken a similar approach to me (though they were smarter and decided it before starting) and one girl said, I think we've proven we're fast by qualifying, let's just enjoy the experience. It probably says something that the winners, professional athletes, came in 9 minutes slower than last year, 4400 people defferred to next year and 2200 people received medical attention.

One of those touristy things I did was to go see Walden Pond, where Thoreau wrote something I've loved since I was 18: "I went to the woods to live deliberately, to suck the marrow out of life, so that when it came time for me to die, I would not learn that I had not lived." I'm a big fan of Thoreau, or at least his ideas but living deliberately for me is never going to be in the cabin (though the pond now has people in bikins in this weather, not sure if Thoreau would consider that an upside or a downside and I can't believe no one has marketed the idea of selling something made out of bone marrow). I want to live with people, to keep the connections that life has handed me and that it continues to hand me. After the Marathon, I went out to dinner with some friends from the running group, then the next day I had meals with an old high school teacher who would take a few of us running at 5 am for a whole 2 miles! My mom, my little brother and I went and took in some of the local museums and that pond. And then I was more touristy and started an evening with some local ultimate friends at Cheers including one who had been the one who had driven back and forth 8 hours in one day for that tourney that seems so long ago that helped so much with my medical bills. When the diagnosis came, there was no way not to think that was the beginning of the end and who the hell knows when or if I'll die of this but honestly, I am glad to be in Boston because it feels like the end of the beginning. Life Part II was conceived by a seizure and the delivery has come. Not every part has or will go well; I put a lot of work into a marriage that I couldn't stop from collapsing. I put a lot of work into a marathon that I decided to jog in because the weather was too unreasonable. But while I was here, Lumosity.com, my primary brain rehab tool has decided to sponsor the Brain Power 5k. The director of Hawktober decided to nominate me for Austin Monthly's 10 most eligible bachelors issue (oddly enough my facebook Status on April fools was that I'd won the lottery and that I'd been nominated for Austin's most eligible bachelor) the day after I threw away the jersey about my valentine's day marathon, they've asked if I'm interested in an interview(I sent them the Livestrong video as a warning before answering them that I come with some serious baggage and I'm not sure anyone in the world should, could or would sign up to help unpack that). I start the training for that Livestrong 100 mile ride soon... I have a doctor's appointment when I return to see how the marathon and my body are reacting to each other. And above all in importance, a week from Saturday, Kiana and I are going to our first daddy-daughter ball, sponsored by the child cancer counseling classes provided by Wonders and Worries. As great and scary as this all is, I still assume it will all eventually fade...but who knows?

My life isn't all new, perhaps not even mostly so. I never thought I'd be this involved but like the picture in the previous blog you stay connected to what gave you life and you try to pay it forward as well. But I'm still directing and playing in an ulti tourney I started on Sunday. If my flight gets in on time, I'm going to my running group's hill workout tomorrow. Marrow sounds gross so I'll probably never suck on it but when the time comes for me to die, I may not remember life or have language functions if it's from this. And that's scary but at least today I get to take Kiana to Harvard and to Boston Museum of Science. But I am pleased and comforted by the fact I can't imaging learning that I have not lived.

Best of Times, Worst of Times

There are those who will call this entry spin. I couldn't possible care less. There are those will be disappointed that I didn't run as hard as I know how at Boston and that I understand and at some level apologize. Today, I ran the Boston Marathon... sort of. It was one of, if not the hottest Boston marathon ever in its 116 year history. People have been trying to convince me long before that to just celebrate this, there were kids to give 5 to, lines of girls waiting to kiss you and the ability to feel like a rock star because half a million people were lining the street. Never having been there, I wasn't sure why that mattered. Even the night before as I sat with some friends, they were suggesting I enjoy it and I had no intention to enjoy it the way they were suggesting. Having collapsed a few days after the last marathon certainly had me nervous, but I'd come from Austin where I'd done a half marathon in the pace time in similarly hot conditions so I went out to give it all.

I arrived in Boston and took Kiana out to the ball park with Team Livestrong where the Red Sox had the second victory of the season. Again, it was awkward to hear that my story inspired them but I would introduce them to Kiana who would steal the show. Sunday we spent the day going to an aquarium and seeing Paul Revere and historical things. She loved the aquarium but my 5 year old does not care too much (yet?) about American History. Then I went back to the hotel and realized the temperature would be ridiculous for the marathon and I sat and thought and called people trying to figure out whether to reevaluate. With almost no exceptions, the runners who had been there were telling me to take it all in and forget about the time, especially with the heat. The non runners were just telling me, no guts no glory. A couple in each group told me to do this one for me. One friend reminded me that I had medical issues and to re-evaluate my priorities. I called a doctor who of course suggested that running a marathon 30 degrees hotter than I ever had was less than intelligent especially since it started at the time I usually finish. I sat with my brother and told him I was planning on leaving it out there and to not let my mom freak out if I collapsed.

I got to the start line and made a few friends who had moderated goals, others who had taken the rare opportunity to defer registration (I considered that for .2 seconds). I started at the pace I was intending to keep and then about mile 4 I saw someone collapse, at mile 4! I kept pace. Then at the 7 mile mark I saw 2 more collapse, one seemed, and this might be my over active imagination appeared to be seizing. And half a mile later my ipod gave out. So I had silence to think and a million thoughts went through my head and about mile 8 (of course) I decided this marathon was going to be the one we enjoyed differently, take that victory lap that no one had talked me into. I wondered before deciding that if that would disappoint the people whose events like Hawtober, Livestrong and the Brain Power 5k I'd helped organize and that was a huge hesitation. I have no idea how they'll take it but I know at least one of them, Livestrong had not highlighted in their promotional video (ww.livestrong.org/iram) my strengths but rather my mishandling of the cancer. We'll see how the other 2 respond. But Boston is phenomenal. I started having a blast and took water bottles and splashed on the people who were splashing me to show them "what it feels like." There were rows of sorority girls lined up to kiss you at one point with great signage and I am not going to tell you how many I kissed (more than you're probably guessing) but without exception, they weren't the most attractive ones by far and I've never received such enthusiasic kisses from anyone who wasn't five (all on the cheek). Around mile 10, I crashed into my little brother, mom and Kiana and, if you're disappointed at the rest of this, please be proud of me for finally doing this and ashamed that I've never done it before, for the first time in a race I stopped and hugged Kiana. I think she thought it was gross.

By the time I got to the half way mark, I was at a 1:40 a pace slower than I've ever done anything both shorter or longer than a marathon. I turned my watch off at that point. There were soldiers on the course carrying gigantic backpacks, I'm guessing to remind us that they carry a lot more of our load than we're aware and most of them were walking and I talked to about a half dozen of them and to their credit, the Boston crowd didn't take much prompting to cheer a lot for them. One soldier in the race would be leaning over and I sat and talked to him for a while and we walked together for about a quarter mile. I didn't walk at all on Heartbreak Hill because a hill can't break something that's already broken plus then I'd have to answer why I walked on HeartBreak Hill. (Speaking of that, because of the heat I had decided to run the entire thing without a shirt and knowing it was a shirt I'd never see again, I threw away my first Austin marathon jersey, the first one I'd done because I had run it on Valentine's Day with someone who would break my heart, hoping that Boston is the conclusion of moving on).

In the end, I was walking for most of the end, chatting with people who were hurting, taking a bet that yelled about how Tom Brady Sucks and the other side of the bet was about how Samuel Adams sucks but I remembered it wrong and yelled about the Red Sox sucking. I got oranges thrown at me. For the first time ever I took a swig of beer on purpose during the course and a bit of vodka on accident.

At about mile 24 I started running hard just to finish strong because I had plenty of legs left but then I wondered, what's the point to that? People who were passing me at the end were encouraging me to run in with them telling me I could do it but I just smiled. Team Livestrong was shortly before the finish and cheered loudly. I was desparately looking around for my family but I would not see them again till shortly after the finish. In the end, my mom, little brother and little girl were there to hug me, the first time my mom has ever seen me run a marathon. She asked if I was okay and the honest to God truth is I feel fine right now because I didn't leave it all out there. Boston's logo this year is All In which when I picked up my Bib I interpreted as gotta leave it out there no matter what the temperature is. Again, you can call this spin, and I am sorry if I disappointed anyone by not leaving it all out there, and there will be other races where I do leave it all out there, I promise but today, I chose to interpret All In about mile 8 as the way you to take it, not leave and unlike the other 4 I've run, I absorbed it and took it All In. I remember more of this marathon than the other 4 combined. And I'm okay with the fact that I put off brain surgery to qualify to do this. Maybe you think that's good; maybe it's disappointing. If there's anything I've learned in the last year it's that the people who matter are the ones who are with you through the good and bad. If you read this, you're probably one of them and the picture above shows the ones that has been there since my birth and the one I hope to delay death for since I've been there since her birth.

If you're curious about my marathon time, it was a little under 4 hours. About 30 minutes worse than any other marathon I've ran. If you're curious about what kind of time I had, I had a great time.

Stumble or Collapse

Someone who reads this blog said that some entries sound well thought out and others seem just like stream of conscious (oddly enough I typoed that as a scream of conscious). Well, let me tell anyone who reads this a secret, they've all been written in 20 minutes or less; there are just days my thoughts are clearer than others. But be warned this will be one of the more rambling ones.

I sit here and get contradictory advice a few days before Boston. The friend's house where I was staying fell apart since they had to move and so I'm scrambling to find a new one. I am both nervous and excited about this trip. I get told to be calm then someone else tells me to absorb the pressure and use it to fuel the fire. I listen to Augustuna's Boston which was the last song on the playlist last year where it was just about going to Boston but this year it's also that and "I think I'll go to Boston, where no one knows my name." I watch the weather report, not as cold as I'd like... I am nervous enough to where my sleep is disturbed most nights. I get told that it's just a race but that's not true...other races will be and others have been "just races" but this one isn't. I put off brain cancer surgery to get to this race, this one's a milestone.

While the playlist was theoretically locked down, I ended up changing two songs on it. They both replaced songs that were just for cheesy fun. I've had a few people tell me to take Boston as a victory lap but I don't know how to do that so I replaced Razzle Dazzle with Nickelback's "If Today was Your Last Day" since I collapased not too long after the last marathon, I am going to assume Boston is my last:

Against the grain should be a way of life

What's worth the prize is always worth the fight

Every second counts 'cause there's no second try

So live like you'll never live it twice

Don't take the free ride in your own life

And that's towards the end but I am also going to acknowledge that I'm nervous in the beginning since denial is at best stupid. I have to acknowledge that I am nervous about whether or not I can break three hours or getting a pr or finishing or whatever the results end up being, that I am scared both about this marathon and about how I live my life which is why DC's talks, What if I Stumble is on there:

What if I stumble, what if I fall?

What if I lose my step and I make fools of us all?

Will the love continue when my walk becomes a crawl?

What if I stumble and what if I fall?

That first Livestrong Marathon, the marathon I qualifed for Boston I had some competing thoughts but the ones that won out were the ones that I wanted this story to end with me going to Boston. The second Livestrong one I got a trophy at I was glad to be standing but disappointed in the time but also in the fact that I couldn't shake certain thoughts but still grateful for the Survivor Trophy with the title survivor being enough trophy.

I hadn't figured out how to dismiss the fears of collapsing in the middle of it since I physically collapsed a few days after the last one. So rather than try to pretend like I am not afraid, I just added Eminem's till I collapse and so around mile 24 if I'm on pace or much earlier if something went wrong and I'm walking:

Music is like magic there’s a certain feeling you get when you're real

And you spit and people are feeling your shit.

This is your moment and every single minute

you spend trying to hold onto it'cause you may never get it again.

Till the roof comes off, till the lights go out

Till my legs give out, can't shut my mouth

Till the smoke clears out and my high burn out

I'ma rip this shit till my bone collapse

I am nervous because that damn collapse didn't let me train how I wanted to between the Austin and Boston. At the Austin marathon, I put stickers on my bib of a lion and a lion cub to look at in dark moments but those were on my shorts which I don't look at much during races. This time, I'm bringing a sharpie to have Kiana write something on my hand that the GPS watch and the Livestrong band will be on (because that's the wrist I'll look like the most). On my right hand where the pace band and road ID band goes, there will be some things to think about, the communities, friends and families that helped carry me here

Today I received the first and saddest of the Livestrong vidoes that we worked on together http://www.youtube.com/watch?feature=player_embedded&v=4h2vZB0388E. Let's just acknowldge that the way I handled my marriage while dealing with cancer, perhaps long before that, and not getting a PR in Austin when I was in the best aerobic shape of my life were failures but perhaps I should echo the attitude someone recently sent me: “Don't be afraid to fail. Don't waste energy trying to cover up failure. Learn from your failures and go on to the next challenge. It's OK to fail. If you're not failing, you're not growing.”

Robyn, one of the girls from my running group got me the shirt attached above. The fact that they were incredibly kind when I fell in the middle of the run and that a few weeks later are making fun of me about it is one of the many reasons I love my running group. I hope Boston's my best time ever but if I pass out anywhere in it follow the directions on the shirt because unless I collapse there is no chance in hell that I'm failing to get across the finish line even if I have to crawl.

Were It Not For Grace

I am not the best home owner or neighbor. I mean in some ways I’m a decent one as most of my close neighbors have been to my house and I’ve been to theirs and apparently unlike most of the American population, we know each other’s names. I went to church with one for palm Sunday and going with another to Easter Sunday (someone suggested that showed that I’m open to different religious view points but perhaps it just demonstrated I don’t have a home church). But on the bad neighborhood end, I am someone who lets his dog run around unleashed ­­­too much and who doesn’t mow his lawn frequently enough. I’ve had a hole in my fence for a few months. In my view, it’s not egregious but never having really lived in a house where I had to help with any of that stuff and not really caring what my neighbor’s lawns look like, I may not be the best judge. But my neighbors never really seem annoyed but always gracious.

But this Easter weekend is in severe taper mode for Boston, with only 10 miles to run on Saturday (this is why we’re called the Ship of Fools, who says “I only ran 10 miles” in the real world?) so I got up two hours before the run and did all the stuff I’m going to do in Boston to keep testing the knee and it went all right but in the waiting time, I set up the lawn mower to the right height. In the last few days I’ve done a variety of gardening things and fixing a hole in the fence and doing things like taking the dog to the vet for the first time in a year. Last year around this time I did almost none of that. I had neglected it all to the worst level ever I’ve done by far because I had a marathon I was training for and a surgery I was thinking about and Ipad apps to learn and books to read and a wife and daughter to love (all not necessarily in that order), all while nervous about an upcoming trip to the East Coast. When I got back two or three dozen friends showed at various time up for those weeks I wasn’t allowed to drive or return to work and needed to be monitored. They sat there and helped plant a garden, walk around the neighborhood, drive me to follow up appointments, help with the lawn and bushes, clean house, provide meals, help with the dog, play word and memory games. My friend Will Lafferty had set up a care calendar and people like Cindy and Dave Armstrong, Bob and Irene Dooling helped plant a garden. I wish I could name them all and they all got Christmas cards in December and thank you texts right after I did their tasks this year but there is no adequate way to say thank you; it’s sad that there is no proper way to acknowledge it. People from ultimate, work, running, my physical therapist herself all showed up at the house. They would later acknowledge, only 2 said it at the same, that I seemed awfully tired, not quite like myself, mostly because I seemed unable to get or make jokes. I didn’t have my energy level and the guy who hates sleep was taking 2-3 hours of sleeping after lunch each day. Anyway, last year, I had put all this house maintenance off because I was going to the east coast. This year, perhaps just making excuses, I was putting off some of this stuff under the pretense that I didn’t want to get injured doing any of it before the Boston marathon but that’s a cheap excuse for neglecting your house so now it’s done. Plus it mattered to me that leaving it all done was the right way to leave my home before heading to the East Coast, this time for a better reason. It is interesting though that before all this, my house was just somewhere to sleep (the only room that had ever gotten lot of effort was Kiana’s, she being literally the reason I bought the house, almost exactly 1 month before she was born). Now I’ve gotten to be a big fan in the decorations and planting trees department and all of those reasons many other people buy a house. I am not quite sure what it says that it took brain surgery for me to make the house home.

On Good Friday, I packed all the stuff I would need on race day for Boston and I went to Mellow Johnny’s to pick up the bike that Livestrong is lending me and the gear that is being donated to me. I clipped into a bike for the first time while it was on a stand and was told not to ride it till after Boston because I could fall and get injured (this one I’ll listen to). I met the owner of Road ID, PJ Rabice, who was kind enough to provide me a gift certificate so I can start wearing that emergency bracelet I should probably have started wearing oh… 18 months ago. I met one of Lance Armstrong’s greatest supporters who showed me his bike which has electronic shifting (I honestly have no clue what that meant). I put on gear that makes me realize that running and ultimate clothes have the advantage that I have wiggle room to pretend like I have more muscle underneath. I brought Kiana with me, showing her the steps that I still had to learn in riding a bicycle; she went home and rode some more of her own after that. With some of the fancy stuff she was looking at and asked this or that, it was one of those moments where she got to realize that dad doesn’t have the answers to all of her questions. I left there with it all still feeling surreal; oddly it was trying to dismiss some of that surrealness that inspired me to do things like fix the fence and pick out some weeds all while listening to the Boston playlist. As I sat there and realized that there’s more to putting together to some of this home stuff than I knew, one of my neighbors came and helped me while educating me. As I spoke about things I don’t understand about Kiana’s mother, he said to me in one of those aha moments, if I were in Kiana's mom's shoes, I’d probably do something similar in regards to the counseling since I know the child would come to me if you were medically incapacitated (this helped make some sense of why she doesn’t care about taking some counseling sessions to draw out a plan but I’ll never quite wrap my mind around how someone with a kid doesn’t fight like hell to not miss a moment of their lives). Like a good doctor friend who also knows about these things, he said he doesn’t think I’ll beat this tumor forever and I should live accordingly. He added about Kiana’s mom that someone who leaves that fast and under those circumstances was clearly unhappy and that he believes we’re both better off separate no matter how much I loved her. I love blatant honesty but that was tough to all hear even when I realize there’s wisdom in it.

Kiana had a blatantly good time both at the church services, at a birthday party and at an Easter Egg Hunt and helping with the lawn stuff. I’ve been part of some serious races but I’ve never seen so many false starts and runners knocked down than as at the beginning of the Egg Hunt! I’d pay serious money for half her energy and enthusiasm in the race now 8 days away. I put off brain surgery to try to qualify for this and I want to leave it all out there whatever that means. I hope not to disappoint myself or others­ but either way let me say that I am grateful for the graceful while I quote Larnelle Harris

Were it not for grace, I can tell you where I'd be
Wondering down some pointless road to nowhere, with my salvation up to me
I know how that would go, the battles I would face
Forever running but losing the race, were it not for grace.

Susan who stayed for a week and paid for that bad ass tattoo I sport, the woman I call my older sister (she says men see all women as either wife, mothers or mistresses and I see her like family but she says she’s too young to be a mom figure so we settled on sister), said shortly after my ex left last year that I was missing just how lucky I was. She said she understood why this abandonment shock would be a distraction but she added she hoped I would realize how well my medical procedures went and that it would sink in someday. Having met more and more both general cancer and brain surgery patients of both cancer and other brain issues, I can say now about a year later, she was right that I had no clue how gracious my friends had been and how well my surgery had gone. Having been at three churches in the last week, I have had plenty of time to reflect on accepting grace from those who helped me in ways I was incapable of helping myself. Thank you folks for the grace and this time before heading to the East Coast I made sure my lawn is mowed, my fence is fixed, and Kiana had some church and Easter eggs…

Just the Two of Us

Kiana attended her wonders and worries class and was quite chatty about it on Monday after her bike ride. We had a long conversation which was the first time we used the word cancer frequently and even used it in the context of the memorial. There were moments she was clearly scared and asked to sit in my lap and said many odd things with one that it took all I had not to laugh, “Why can’t mommy move back in and just visit her boyfriend?” If only the world was as simple as children see it. The Wonders and worries person brilliantly pointed out though that this should be more on Kiana’s radar as she gets older both because of the medical possibilities but because I am choosing to get involved with things like the brainpower5k and the Livestrong events. That still all feels rather strange frankly but like loving your parents, the natural instinct is to love and give back to those who helped give you life, in my case both Part I and II.

It’s interesting trying to balance all the things in my life right now. Back during the custody and visitation negotiations on a tip from my friend, the midweek visits were set up during my running groups Tuesday and Thursday workouts both to allow me to get some adult social time, it allowed mother to see her twice during the week but also because it was time I didn’t use to spend with Kiana anyway so midweek to me there was nothing lost. The friend who had done something similar and suggested the idea, had also felt abandoned during a very rough time in their life, clearly picking up that there was both pain and anger from me said: “The way I got through it was just to think of it as a free babysitter who had to pay to babysit once in a while.” We had a good laugh but it would be less than honest to say that wasn’t helpful.

And it’s worked out for the most part with me doing most of harder workouts with Kiana with her mom and then pushing her on a stroller on the easier ones. However, having been found unconscious in the middle of a 10 mile run over a month ago, I hadn’t pushed her once since then till last night when I went on a happy hour 5k so I knew I was surrounded by people at all times. Somehow the idea of me collapsing on the side of the road obviously creates concern but a small child having to be helpless with that, made me put it off until I got all the medical results in yesterday (again, reinforcing why I got my doctor he said I should be fine with all types of things talking about how this should be in the blood at levels 20-60 last time it was at level 3 and now it’s at level 37.5 and sometimes when he goes on these extended conversations I ask questions and other times I just smile and nod).

Her mother and I still aren’t making much progress and I can’t really diagnose why since it’s been over a year since she left. The “hole in my brain” from the surgery took about five months before it would heal back over and the hole in my heart will take longer and while it has made some progress, I’m not quite there yet. But I didn’t stop using my brain while it was healing, nor do I stop exercising till I stop being sore, so I am still trying to love and be loved though there are some guards up. Either way, her mother is not interested in the counseling but, in light of both that and all circumstance, I still thought it was the wise thing to be putting in a legal plan into place in case my health ever dives, one of those break only in case of emergency portals, and while I had hoped to hammer it out with her over a few counseling sessions, I am doing it with a friend who either he or I will present it to her when and if it’s necessary.

So I am trying to balance cancer with single fatherhood. Helping her understand why I go to medical appointments, putting in legal paperwork, her doing some counseling. I’m also just trying to do the regular acts of fatherhood right with things like bicycle riding and cooking (still, she complained about my burnt tortillas this morning). Tonight we’re going to a special Easter thing and to Austin’s first Thursday where she’ll definitely get one of her favorite Amy’s ice creams. At my 30^th birthday party, I said if you’d ask me at age 20 to predict my life at 30, I would have gotten one thing right: the person standing next to me. At my 31^st (the diagnosis and all this other schtuff came between the two proving that life goes down hill at 30), I thought I would have gotten nothing right between the two but that’s not true. It’s still a girl next to me and while this one may not be there forever since it’s my job first to give her roots and then to give her wings, I am infinitely grateful she’s here now.

On my Boston playlist, there are songs throughout because she likes them or because they remind me of her. The last one from that camp that was added was Will Smith’s Just the Two of Us (http://www.youtube.com/watch?v=_WamkRSDeD8&ob=av2e) because of many lyrics like the car seat one which I spent some time on. There was a time Kiana had a fever, the first health insurance claim my insurance ever took and they got yelled at quite a bit when operators in another state couldn’t tell me where the Austin children’s hospital was. When she gets shots and cries, I do too (the crying, not the shots). And when I was sitting waiting for the MRI after being on the side of the road I sat there and cried as I thought of her. But the main lyrics that got that song put in:

It didn’t work out with me and your mom
But if push comes to shove you was conceived in love
So if the world attacks, and you slide off track
Remember one fact, I got your back

It makes me nervous that Ronald Reagan when the memory part of his brain got eaten away, he didn’t remember being president. My great grandmother didn’t remember someone she’d spent 70 years with. Our emotions don’t necessarily overrule our left temporal lobe. I don’t know if the memory will go but if it does, I hope that one fact about this little girl is the last thing I remember.

Yet To Be

A couple of friends who read this blog have asked to see “The Boston playlist,” which is locked in and below (make fun of my musical tastes now). While some songs are just on there because they are fun or have a good beat, I’d say over 80% have good emotional connections and o% have bad emotional connections correcting the mistake from Austin. The last one that was added was Eric Hutchinson’s "Oh" because of the lyrics:

“and im never sure what i'm living for but it's always on my mind
someone comes along always proves me wrong think im gonna be fine”

But all the songs are about the present or the future. I went to a Palm Sunday service yesterday which was great and had a testimonial service. Back when I was a pastor and I directed those, I loved those stories but always tried to encourage people to stay more focused on the present and say “what has God done for you lately?.” Some people have great redemption stories but it’s what we do with that redemption that matters most in my book. If the purpose is just to breath well even cancer and parasites are trying to just survive. I put off brain surgery to qualify for Boston but now I also want to do well at Boston. I watched an old interview with Lance Armstrong, someone who had accomplished many things long before his diagnosis and even better ones after and, of course promoting his organization but also explaining why he founded it, he said before cancer I was just living and now I’m living strong. I’ve tried to talk about the ways I’ve changed and tweaked and perhaps been a bit too proud or stubborn in acknowledging that cancer had anything to do with it, even trying to say it was biological changes (which there were some) or shifts and freedom from the divorce (from which there were others). But the simple reality is that I think I liked my life plenty before all this but I like it better now. Someone gave me and someone else a card that said, “a successful marriage requires falling in love many times, always with the same person.” Well that didn’t work out for me with a person but it’s still happening with life and the scar on my head makes me love infinitely more the people like my daughter, my friends and family who stuck through this, fun things like a good party, a good run or a good game more than I ever had.

Boston is two weeks away and then of to new adventures of training for the Century ride of 100 miles begins. Kiana is wanting to ride her bicycle today some more after school (when we get her a helmet). I did a tune up race this weekend, the Zooma women’s half marathon where I came in second to a fast girl and the knee wasn’t too bad. I went from there to the committee that will help put together the Brain Power 5k.

This is going to be part of my reality. The last card I ever handed anyone before Dr. Friedman would go digging into my brain was handing my ex one quoting Emerson, “Come grow old along with me; the best in life is yet to be.” The recipient may have passed on the initial offer but I think the second half still stands. And I am thankful for those who stayed here, those who have entered since then and if and when, those who are still coming. But I hope that I am both always and being part of people’s present and don’t focus too much on anything in the past no matter how good or bad it was. And if that’s one of the symptoms of brain cancer, I’d sing up all over again.

In My Daughter’s Eyes, Martina McBride
My Way, Frank Sinatra
Imagine, John Lennnon
Amazing Grace, Celtic Thunder
The Impossible Dream, Man of La Mancha
Boston, Augustuna
What if I stumble, DC Talk
Life on the Moon, David Cook
Friends Never Say Goodbye, The Road to El Dorado
A Brand New Day, Joshua Radin
Oh, Eric Hutchinson
The Urgency of the Generally Insignificant, Wayne Watson
With My Own Two Hands, Ben Harper
The Time of Your Life, Disney
Feeling Good, Michael Buble
I Just Can’t Wait to Be King, The Lion King
Quiero, Arjona
Razzle Dazzle, Chicago
Ballad of San Francisco, Caedmon’s Call
Mojado, Arjona
Cinderella, Steven Curtis Chapman
My Next Thirty years, Tim McGraw
Bad Bad Leroy Brown, Celtic Thunder
Dance, Caedmon’s Call
Testify to Love, Avalon
Bells of Freedom, Bon Jovi
La Camisa Negra, Juanes
Billie Jean, Michael Jackson
Lonely No More, Rob Thomas
Nice Guys Finish Last, Green Day
Valio La Pena, Marc Anthony
Voodooo Child, Rogue Traders
Thankful, Caedmon’s Call
Handlebars, Flobots
Just the Two of Us, Will Smith
A Dios Le Pido, Juanes
A Little Less Conversation, Elvis Presley
We weren’t Born to Follow, Bon Jovi
I Can’t Decide, Scissor Sisters
Paralyze, Finger Elever
Holding out for a Hero, Frou Frou
What Doesn’t Kill You Makes You Stronger, Kelly Clarkson
It’s My Life, Bon Jovi
Lose Yourself, Eminem
Move, MercyMe
This Way, Kanye West
Harder to Breathe, Maroon 5
I’m still Standing, Elton John