There stands the cost is another song I’ve been listening to
Larnelle Harris these days. I am amused at people who think I’ve got it good
because of the nice parts of the cancer story. I just filed my taxes and man I
am good at the tax situation. Last year medical bills and divorce got me a tax
refund that I was surprised at. This year’s 9 grand medical bills, having kept
up with the payments on this house, single parenthood got me another tax refund.
When I mention it to friends, they are like wow that’s a good tax refund. Umm,
it’s less than the medical bills… wanna trade? No one takes me up on it.
It’s been an interesting bit of luck since I commented on
Lance Armstrong. Within a few hours of me posting that and it was a compete
coincidence, they posted two other youtube videos with me of how they had
helped. We talked about this when we’d filmed it all but I’d forgotten about
it. This one is definitely my favorite one of all the stuff I’ve done, finally
some of the jokes made the cut: http://www.youtube.com/watch?v=X5cKt9vBeFA.
I went to that 5k with Hawktober and the founder of that continues to be one of
my heroes. A guy who had to learn to walk and is now about to do a marathon.
Talk about someone who knows that you never take a step for granted. But in
regards to that Lance Armstrong stuff… I don’t care. He wanted to make his
narrative that he was a great hero. I am not, I am just a guy that had the
wrong fear when I thought I was on my deathbed, that my wife and daughter’s
bills would not get paid. Now, I have the right focus that money comes and goes
but moments with her are irreplaceable and I am going to get as many of those
as I can. I still love Livestrong. To me, the faces of Livestrong are all from the last couple of years.
They have been the staff that pointed me to the right type of doctors, that
connected me with someone else who had the same diagnosis, others who had to
deal with a divorce during medical issues, others who learned which limits to
accept and which ones to push, counseling for me and Kiana about the
appropriate way to communicate with a six year old about it all, counseling for
me, a staff member who helped to learn to drive my new car (a bike), volunteers
who would give me rides , and an "engagement" ring which made out of
the same yellow material which reads hope. I may have screwed up my handling of the diagnosis with my high school
sweetheart but I'm not screwing it up with the one I want to be at her high
school school graduation. And that’s what I think about when I make Kiana
breakfast, the part of my living that is the strongest.
Yesterday I got my first sponsored race from Luke’s Locker,
a distance I’ve never done before, a 30k. And I am going to do it with a
stroller because I want to keep pushing how well I push a stroller and I
figured there is only so many of those races where Kiana will get to run there
though I hope in due time we’ll be running them next to each other instead of
her constantly beating me by just a couple of seconds.
As I watched the Lance Armstrong interview someone let me
know that I was both currently on their homepage, www.livestrong.org and on their blog the
day of that interview which felt eery.
Frankly it was a nice distraction from worrying about court where I am
going to argue that Kiana is better off with one of her parents and her mother
is saying she should use some of her time of possession for Kiana to be in
daycare. It makes no sense to me when I’ve offered to watch her for free.
But for me that’s the cost of swallowing my pride, more time
with my daughter. Sign me up for that over and over over again if that’s the
cost and compensation of cancer. The arguments her mother and I have are to me ridiculous. I
argue she should have nicer glasses than what the basic insurance costs, her
mother says let’s just do the minimum. I argue that she, due to cavities,
should only have fillings the color of her teeth. Things like glasses and teeth
are part of who you are (most of my front teeth are fake by the way for those
of you who like my smile due to discoloration from the water in Mexico) and
having things like that mess with your confidence especially as a child. I don’t
go to Duke because they were the cheapest, in fact they were more expensive but
you do the best you can with what you’ve got and with things that are as part
of daily life as glasses, teeth, and my brain, I will make sure I pull off the
best I can for my daughter.
I still keep finding new compensatory strategies to
compensate for my issues. Most of them I still only reveal to the people who I
know well but for things like the face name recognition for the first time ever
at a party at my house, for Kiana’s 6th birthday party, I used name
tags. Kiana ratted me out when the first few people arrived and said that’s so
that daddy knows who you are.
So yep
yesterday Lance Armstrong had an interview. The part that bothered me the most
was that he said that when he fought cancer it gave him a mentality that he
would do anything to survive and so it taught him to do whatever it took to
win. For me, ironically, cancer has helped me accept limits in some areas but
not in running and not in raising my kid. He had an interview, Livestrong had a
rough day I am sure, but I had parental advisory council meeting, I ran 10
miles at marathon pace and had a meeting about getting my daughter into the
gifted and talented program. I joked there that obviously my daughter was the
smartest, most beautiful kid the world had ever seen. But I also had to fill
out a form where I explained some of the reasons I think she fit in and I
swallowed my pride and said that the teacher had better examples but also
bragged about how both Kiana’s mother and I had been valedictorian of our high
school class. 15 mile run tomorrow, trail run Sunday, track workout Monday.
Tuesday, I meet with the attorney to prepare for court and from there go to see
my neuro oncologist for the first time in a few month. Court is next Wednesday and
I am scared and nervous but I am going to trust that the judicial system will
understand that my brain may not be all it once was but I am still fit and fit
to parent.
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