Sunday, April 29, 2012
Thursday, April 26, 2012
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.
Because I could not stop for breath
The 10 K Stopped for me
The thought of being overwhelmed
It Ended concretely
He kindly stopped for me;
The carriage held but just ourselves
And I had put away
My labor, and my leisure too,
For his civility.
Tuesday, April 24, 2012
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.
Friday, April 20, 2012
Wednesday, April 18, 2012
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.
Monday, April 16, 2012
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.
Monday, April 9, 2012
Sunday, April 8, 2012
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.
Thursday, April 5, 2012
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 30th 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 31st (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.
Monday, April 2, 2012
someone comes along always proves me wrong think im gonna be fine”
My Way, Frank Sinatra
Imagine, John Lennnon
Amazing Grace, Celtic Thunder
The Impossible Dream, Man of La Mancha
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
Razzle Dazzle, Chicago
Ballad of San Francisco, Caedmon’s Call
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
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
This Way, Kanye West
Harder to Breathe, Maroon 5
I’m still Standing, Elton John