Sunday, January 13, 2013

Down to the Walk

The journey of cancer has been strange for me. The coincidences that have lined up make it seem like the narrative was almost meant to be written, the first time I came in first in my running group, the next day I have a seizure (I still think running fast is the cause of my brain cancer). The coincidences that line up with Livesrong races, brain cancer research races, collapsing in workouts, a job and spouse who weren’t very supportive when this all started and were then separated… keep making me look up that saying of Einstein on my wall, there are two ways to live life: one as if nothing is a miracle and one as if everything is… If I have to choose between the two, I’ll take the latter.

But at my doctor’s appointments, I still will always ask two questions am I fit to raise a kid (why I get through the day) and can I keep running (how I do it). I trust my team of doctors enough to where when they say no, I’ll give up each or both respectively. But until then, I am going to give it what I have. Yesterday, my schedule called me for a 20 mile run. There are days where running is hard enough even in perfection conditions. But yesterday was hot and humid and my stomach wasn’t thrilled so that or the anti seizure medications make me vomit (or maybe it’s all the chocolate I have). Ironically, I worry the most on the days I vomit on whether the vomiting means the drugs have left the system and I should go home and take more (all but one of the vomiting sessions have been in the evening when I’m about to retake the evening one anyway).  

Still, the weather was horrible yesterday, I was supposed to do a 20 mile run at a 7:08 pace and it was an incredibly warm day in January, in the high 60’s at the start where it kept getting warmer and for the first time ever by choice I took an easier route than the group and had to walk way too much. I didn’t keep the pace on my worst run in a couple of years but I got the 20 miles done. At the end of the run, my faith in humanity got shaken a bit. For all of these workouts that I have biked to or gotten rides to, I just leave a bag at the beginning of the workout with my wallet, my phone and a change of clothes. It’s always been there till Saturday. Ironically, what bothered me the most wasn’t the wallet or cash in there or even the clothes but the phone. I hate cell phones personally, never having been able to decide whether that or spandex in plus sizes were the worst invention ever in humanity. But part of the safety plan we’ve submitted in court documents is that Kiana knows how to call 911 and while I haven’t had my cell phone every second I’m with Kiana, I am proud of my batting average. Still, in that suspenders with your belt on, she uses an old phone of mine to play with and knows that (and thank whoever set up the system), that 911 calls work even on inactive phones.
More importantly though, from there was Kiana’s sixth birthday party. Her school has a policy of that if you invite people through the school you have to invite everyone and I was shocked and grateful at how many people RSVP’d yes. All the gifts that came from Christmas or her birthday were used for arts and crafts for her party. And all the pictures were taken of the activities and while of course people brought gifts, I tried to discourage that being the focus and focus more on the piƱata, the pin the nose on the lion, and the “cover charge” of making  where everyone who came had to put up a butterfly on a banner.

Still, the legal issues still are still outstanding and my attorney and I have decided to continue with the old phrase of you pick the hills you’re willing to die on and everything else is flexible and there should be very few hills you’re willing to die on. Kiana’s mother and I made some progress I hope in that she came over and we had no problems interacting at Kiana’s birthday party. We’ve offered them a legal waiver for my medical records regarding cancer, neuropsychological evaluations, and seizures. I don’t have to do that as my medical records are protected by law but I can see why her mother would want to see it if our roles were reversed. And frankly if we ever develop trust, I wish she would be the person I’d call because we’re always stuck together while we breathe because our connection has her own breath.  The offer hasn’t been accepted  because there was literally a counter offer that they wanted me to let her boyfriend have access to see my medical records. And of course, I am not going to hand documents I have legal protection for to someone who screwed me over in a variety of ways and who has no legal relationship to anyone I’m dealing with.

I made a mistake during the divorce proceedings last year based on all this. In Texas, the non custodial parent is supposed to cover the health insurance but assuming I’d keep signing up for really good insurance I signed her up on mine and shrugged off the suggestion that I should just follow Texas law. So we’re seeking that this end with her mother following Texas code and that all other custody issues on the table get removed. Unfortunately, in the world of health insurance, which ones I can get are a lot more complicated now in high risk pools and these issues because of preexisting conditions make me getting health insurance very expensive and also expensive to add a dependent.  Of course if I had infinite money I would do it but I don’t and Texas laws regarding my health conditions also keeps me from driving so there won’t be any sympathy from me about asking that Texas law be followed in regards to my daughter’s health insurance.

So we made that offer, follow Texas law and provide health insurance, have whatever doctor, attorney, judge and yourself look at my medical records and drop the custody battle and we can end this now. If they want to drag this out, well, I’m an endurance athlete. And there may come a day where I am not fit to parent but that day is not today and I hope not and pray it’s not anytime soon. I was asked how what my safety plan was without a phone and explaining the 911 capacity on an inactive phone well, I’ll quote myself directly:

I can't guarantee Kiana's safety every moment of the day; no one can. Presidents with secret service have gotten shot. God knows I'd do whatever I could to protect her from everything harmful but I can't.

So I had a phone stolen yesterday, I had a rough run where I walked more than I ever have, but Kiana had a great party and then we went to a church service. That’s a good day, a great day really. I am working on my playlist for the Austin marathon, only 5 weeks away. If the weather is like yesterday or like Boston, I won’t get anywhere near a PR but I’m going to give it all I had. But one of the songs on there is Steven Curtis Chapman Down to the Walk:

You can run with the big dogs 
You can fly with the eagles 
You can jump through all the hoops 
And climb the ladder to the top 
But when it all comes down 
You know it all comes down to the walk 

I’ve gotten to meet some great people through this journey but the best part is that I’ve gotten to know parts of my daughter, my friends, my family better. Yesterday, Kiana had a good party and I walked around after cleaning it up cause 6 year olds don’t clean up after themselves, And tomorrow I’ll walk my daughter to school. And no matter what my running times are, if those walks are what my life comes down to, I can live with that. 

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