Wednesday, May 15, 2013

Full Time, Part Time

(If you read this blog for giggles or happiness, this might be a good entry to skip. None of them are written for that, they are written so that I can go back and focus on my memories as they happened).
Unfortunately, my memory isn’t what it used to be but one part that’s never blinked is how well I remember dates. November 5th, 2010. March 2011, the date of the surgery, March 2012 the entrance to Duke, March 2013, the day I won a marathon pushing a stroller. I remember my wedding anniversary still and believe it or not out of simple self awareness filled the week of the divorce with tons of activities and skipped court because I didn’t want to remember the divorce date; I don’t. But I do remember today’s date, May 15, 2013 exactly 1 year since when I got fired for a history of “poor judgment” and mistakes on the stand, in a job I’d never once had a bad review. If you want to read the entry about that (

I spent time looking for work and in that process noticed and acknowledged deficits that I’d lived in denial to or from myself. Encouraged by friends and a medical professional, I then filed a private long term insurance claim that my doctors felt I qualified for and I am incredibly grateful that my insurance agreed and approved it. Having worked full time since I was 14, working at the job I thought I’d retire from, I hated doing that but those of us who grew up poor realize that sometimes you have to pay the bills and those of us educated through rough lessons about insurance realize that some things in life are use it or lose it and that pre existing conditions make you uninsurable in this country for many things  Even Obamacare, which I hope will allow me to have health insurance after January somehow doesn’t affect lots of other insurance like short term or long term ones like the ones I’m on. I’ve spent some time trying to negotiate with the billing companies for both local care and Duke care and they’ve all been paid as best as I can but the simple truth is that one of those places literally makes more money from me now than they did when I had insurance (ie my out of pocket costs are more than my copay and what the insurance used to reimburse them combine). People have pointed out they can’t deny me care but my doctors are brilliant and neuro specialists are the highest paid in the medical profession for obvious reasons so I want to pay them… I just have a hard time imagining that more money being made now for a patient that was established is just and fair. You also try not to complain because you don’t want your doctors to hear from their bosses that they are not the ones you get to continue see because these were hand chosen because while there’s times I thought my deficits were somehow theirs not cancer’s fault, my doctors are fucking awesome.  (Every once in a while I reference doctor who in here and the current one wears bow ties because bow ties are cool and so does my local neuro oncologist… if you want to see the piece he came out in with Comcast watch how well he rocks a bowtie here: . Actually what I like best about that piece is that it’s focused on what I’m focused on, running is a part of the equation of Kiana and I and while it generates attention, reading to her, walking with her to school is just if not infinitely more important.  

But I made a decision to try to avoid being cancer ( and I hope I’ve done okay with that. I didn’t want to be someone who sucked resources like insurance without giving back. I made being a dad my full time career, an expensive job for those months of waiting time during the insurance, but a few months later the child started school so 8-2 got a little more complicated. I never started working out harder then or now, somehow that felt like cheating. I started volunteering in every place that would have me and that I still felt mentally adequate. This has created some very cool experiences like yesterday I got to help out a Ph.D student with their project. They are creating cultures with different biological ideas. I got to flip over the pools that the culture had grown in but got to hear about someone who was still brilliant. I’ve helped out with jobs that are much simpler than what I went college with two degrees for (let me be clear, these jobs are no less important than what I went to college for but they regularly come with less pay and worse hours than what my insurance is kind enough to provide. If swallowing my pride means taking insurance and getting time with my kid rather than be the world’s greatest janitor, I’ll swallow my pride.  The legal issues still haven’t been settled since her mother refused to sign things and until they are since their request was to go from primary caregiver to supervised visits, I’m going to hang out with my kid and I’ll take anybody’s judgement about that. If that ever happens where I’m just allowed to be a guest in my daughter’s life or if I’m still standing when that time comes, as all good parents eventually love seeing the birds fly out of the nest, you better believe I will be a kick ass janitor if someone will have me).

The running a marathon and winning it with a stroller has come up with pleasant surprises. I now have a race far down the calendar officially scheduled. Appropriately enough it’s a half marathon in Beaumont Texas in November and so it’s the next half that’s officially on the calendar with Kiana in tow. We’ll see how much she grows between now and then. But the scholarship account was opened and that’s made breathing a little easier. I’ve continued to do some races on my own and races have also been kind enough to give me entries if I volunteer or speak or some just period which has let me keep doing more races than I would have imagined. I assume this will end but like Kiana does, I’m enjoying the ride. I ran a track meet Saturday and last year I was so proud of breaking a 5 minute mile and got exactly 5:00.0 this year but if all I’ve lost is a step while marathon training I’ll take it. I’m trying to do new ones, like that stair climb which I could have done faster but it was my first one. I am about to do my first ever Spartan race since they gave me and a helpful friend an entry. I am incredibly intimidated and excited about this race. And

The “Bon Jovi” girl that people keep asking about well, things are going well. We’d been friends for years and I think we’ll be in each other’s lives for a long time. Hell, my cousin might be moving out this summer and I think I’ll always have a back up living with me as long as Kiana does and she’s certainly on the short list for many reasons. Since long before this we were/are close friends before she’s noticed the deficits more than anyone has and recognizes both the guy before and the guy after. But the benefits of full time friendship is the certain path we’re taking because as damaged as I am mentally and emotionally, I am not sure I’m able to provide anything for her or anyone else that’s much simple than Lady Gaga’s bad romance and this relationship will continue as a very good friendship. 

3 years ago… I thought I had my life all mapped out full time till retirement and then I woke up in ambulance and found I had cancer, then lost my wife of 10 years and my job of 7 years. But still, the thoughts that I thought would be there for the full of my life left during the worst part. And while it’s not all I thought or hoped it would be, today I sit with a counselor, and attend a young adult cancer survivor’s meeting I helped organize, exercise, have lunch and do homework with the coolest kid the world has ever known… I wish I could take back some of the parts I got wrong because they hurt other people but otherwise, and while people think the media stuff is cool and no one wants to trade lives, I can honestly say that at least today, and one day at a time is the best I can do, I’ll take the full of my life.

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