Monday, February 25, 2013

World of Demons

One week after the Austin marathon, the muscles are still torn up but it’s now just a sort of residual soreness. But they weren’t too sore to keep up with Kiana on the last lap of marathon kids. Marathon kids is smarter than the kind I do. Rather than do it all in one day they do it over a few months (Kiana did it in 6 weeks!).  It was an amusing morning as she kept trying to hold hands with a little boy and encouraging him to have them run it together. I gave his father a stern talking to about keeping him away from her ;). My mother came to town to watch a quarter lap of her granddaughter and Kiana ran it hard and because friends and family were allowed to do it rather than slow down she took the outside lane so she could sprint it in. As is customary, I let her pick her outfit and of course she did it in a pink dress. Man, I love that kid. I ran home from the stadium not quite yet able to keep even an 8 minute pace for what was 7.9 miles. Keeping my cheesiness and obsession with the number 8 up I did a little extra to get it to 8.08. Didn't have the legs for 8.88

People think I vomit because of the intensity and maybe that’s true but it’s above all things the medication. But I do it fairly stoically according to someone who saw me do it. I’ve done it in the middle of track workouts and then just done the next repeat. Let’s just say that less than a handful of friends in the running group have ever noticed it. I just get back and keep going. People hear about it and their impressed but what else are you supposed to do? As I ran last Thursday night with the ship of fools, the guy running with me says I never pass by that house without thinking about your collapse last year. I don’t either because well that’s when we upped the medication to double what it had been and then triple on the days before, of and after athletic events. I am not a fan of drugs but if this is the compromise so I can keep running, that’s a demon I’m willing to deal with. Still, yesterday, I went to a survivor brunch, the second one ever in Austin and I’ve attended them both. I do some online forums to but there’s something about being face to face, the human connection. All the survivors there coincidentally at this one had experienced seizures. I’ve been on 3 different anti-seizure meds but we talked about the side effects. The one we all had in common was the gastro intestinal issues. The first one I was on took away hunger where even after I ran 20 miles I had to remember to eat and it gave me a flatter affect. One messed with my gut in ways that are probably best not described on a public blog. And the one I’m on now well it makes me vomit some of the time. Not much to complain about and I’ve just put up with it but one of the survivors there is seeing a GI specialist about it all. As this network starts to build in Austin of brain cancer survivors in specific, one of them said something very interesting was that it freaked her out to find out that so many people in Austin had brain tumors. She said something that I still have no good response to that it was unfortunate that this was the way we connected. My take is that there are way too many humans without a solid human connection without an illness and I’d rather have an illness that helps me connect than not have one and not have the connection. That lack of connections is a more serious illness.

I did an interview for Livestrong last week. It will be one of several parts that airs tonight on a Dallas network. I got a rather nice thank you (literally a thank you nothing else for those who like outside magazine still think Lance and Livestrong are a single issue I am always amused at those thorough thank yous because its like when Kiana says I love you. It’s heartwarming and tear jerking but it’s simply being grateful to those who helped give you some good direction in life.  I’d rather not have that leprosy of brain cancer but since I am, I’d like to be the one who goes back and says thank you.
But the trophy was 3 hours and the breakfast one. The demons I still deal with are there. There are emails between my attorney and I, my doctors and I, and while this is the 3rd of 4 months with only 1 medical appointment, there’s 2 next month and then a return to Duke in April. The break has been nice but you know the appointments will never end.  And even though I’ve only had one appointment in the last 3 months, and it was exciting to go through a month or two without medical appointments, I’ll also celebrate if there’s ever a month without a bill. The latest time cover is the longest single article they’ve ever had written by a single author, why medical bills are killing us: In it describes the breakdown of medical bills and how this insurance negotiates for that and this mark up and that mark up. If you’ve read this blog far back enough, you know that when this all started in the ER and all the bills started coming, I wanted to start a restaurant where only doctors could go where they’d get a separate tab from the waiter, the cook, the manager, the bartender, the cashier, the parking attendant, the janitor etc. I still have that first bill from the hospital and to quote that blog entry I wrote:

In my continued efforts to always be an optimist, my friends and I looked through the bills if for nothing else for amusement. There was that "Rad Arrow Art Set" $128, the "Adult Sensor" for $168, the "Airway Oral" for $13 (a real bargain for oral one of my friends commented), the Urine Meter with the 16 foot fold for $126 and the finger probe for $180. These were just a few of the vague but amusing descriptions that made me realize I'd had a much better time at the hospital than I remembered. But they didn't even let me bring home any of my rad art pieces.

I once thought the doctors needed to be more clued in but realize that they are. The administration of all that and prescription companies and insurance companies are all in their own trying to make a buck (or a few of them) and maybe I’m wrong but in the basic human world, I don’t think most of them are doing it in anyway deceptively. I am not blaming anyone because my team of doctors is amazing. They are good enough men and get my focus enough to realize that I’m not doing this out of a survival instinct. I am not even sure I have that, I am doing this to make and catch some memories with Kiana because other than that there are some days I am very exhausted by all this. And I no longer have health insurance of any sort but even so my doctors are seeing me at the rates they would have negotiated with the insurance (not cheap). To give you a basic idea, meeting with doctors has ranged from 68 to 400 for consultations. The MRI next Monday will be a little over $400. But with that said, I received my first ever medical over payment reimbursement for appropriately enough $8. But I do have a long term insurance that pays the bill and they’re being kind enough to also write a letter about the financial details for the court case. And with that said, there are times I realize that there are still rays on the horizon of hope with the biggest initiative ever in human history to understand the mind ( The tentacles of this tumor are still invisible to modern imagery, the machine I’ll sit in next Monday to see it can’t capture it all but maybe this brain mapping will help with see and fight if and how long this demon in my head’s arms are.

I do all these things just so I can say that I am following medical advice and being cautious because well, this week Kiana is the star of her classroom (a once a year honor) and we made her a pretty rad art set. The risk/reward to me isn’t life and death. I’m still going to die and frankly, assuming the odds, I think it will be from this but I hope and dream it’s not anytime soon. Someone was kind enough to say that a weaker man would have cowered a long time ago. I don’t know, I don’t know. When I see the legal stuff and wonder if a judge will rule that a child is better without me long before this takes me, it will be hard to not cower. My head has been bloodied but it’s still unbowed. And when I sit here and whine about this kind of stuff, I read things like Matt’s account of his first marathon ( where he relearned to walk, talk and eat and just ran a fucking marathon.
So drugs, bills, vomiting, swallowing pride (harder than swallowing vomit), medical procedures, limitations, custody battles based on medical issues these are all demons in their own way.  It’s hanging out with the coolest kid the world has ever known. And I still walked her to school this morning and I still volunteered at her school today and will both do homework and have fun with her this evening. And those moments remind me that one may tolerate a world of demons for the sake of an angel.


  1. Hi,

    I have a quick question about your blog, would you mind emailing me when you get a chance?




  2. My daughter turned 25 this day. I realise you won't see your daughter on her 25th birthday.