
I like singing and dancing. Let’s just say I’ve done a lot
of that today. I suppose I should rewind a few hours or days. I have made a
habit of scheduling my medical appointments after athletic events because I figured
if I am going to be getting a measurement of the system, I might as well do it
after I push it. But if I go back a couple of years, in that incident where I put
off brain surgery to run a marathon (I’ve done a few interviews but this one
will likely always be my favorite, http://www.youtube.com/watch?v=X5cKt9vBeFA
particularly that moment where Kiana and I are sticking our tongue out at each
other). There was one MRI that my doctors and I agreed served no function, we
were doing them monthly between the diagnosis and the surgery but we didn’t do
the one in February 2011 because we’d done one in January and the surgery was
going to be early in March and shy of waking up in an ambulance the date was
going to be based on the Livestrong marathon. I’ll never get to live that one
down and I am not sure I am ever going to get a pass on not running after that
but for the last two weeks before the marathon there were no appointments, no
distractions, just the focus of the race. The 3 marathons since then have all
been followed by medical appointments… and the Duke 5k will be as well but this
past Sunday, I did a 5k that was just to set the benchmark of how to train for
the Duke one and this Saturday I get to do my first marathon ever pushing a
stroller (probably the only one). And so I’ve been focusing on focusing. The
ability to hold my attention and memory on things isn’t what it used to be but something
has gone right over the last couple of weeks because my Lumosity scores have
been going up, actually higher than they've ever been! We tried ADD medications once upon a time but they didn’t work
because the problem is structural not chemical. I think chemicals matter and structure matters but I still want to believe one of the mantras from Livestrong matters, attitude is everything.
Anyway, the 5k on Sunday, my first 5k since October was my
best, 17:54 on what felt appropriate, a new course, a Lion’s golf course. Lance
Armstrong was there and while we’ve met before… and while I’ll always be
grateful that he set up Livestrong… me, the guy who rarely feels awkward, didn’t
know what to say because … well because I didn’t know what to say. But it went
well noticed by me that so far March has just been annual check ups and no
unwelcome surprises!
Monday I did my first MRI since June and I can’t tell you
that I’ve missed these things. It occurs to me that this is one of the few
things that I’ve never ever documented and then I realized why. When I asked
they said it was a violation of HIPAA (healthy privacy rules) but they let me
take a picture of the machine without me in it. I cried waiting for the test
because while I’ve lost a lot, the one that’s worried me the most forever is
that some judge really will think that I should only have supervised visits with
my daughter because of two ambulance wake up calls both over a year ago and
focal seizures, the most recent in December. Following advice, I grabbed an
extra copy to hand over to my ex. And then I sat and waited and waited and
waited and waited and waited and waited… as I joke in that video at the
beginning of this, it’s not the suspense that’s killing me. My doctors usually
take a couple of days to get back to me but showing how awesome my medical team
is I got a call and documentation from them today. Obviously what gets put into
medical records is different than just the conversation between patient and
doctors since those take 30-60 minutes and documentation is at most a few
pages. But the Duke guys once upon a time told me to keep running and let me
put off brain surgery. All of my doctors have not joked around with me at first
but eventually they all have and I knew today that the latest addition to the
team had finally understood me when as they let me know they were sending over
the medical records, one of them said, “I’m not sure I can say your mind is
stable from the way you run but everything on the MRI is.” There might have
been a little bit of crying then too and then I headed over to Kiana’s school
where the days she has started with me all have perfect attendance, her grades
are still high and was comforted by that the two things I always ask about, can
I keep running and am I fit to raise a kid, well, I still have the Universe’s
blessing on them. I might have been singing I could have danced all night and
done a spin around the stop sign before the school and gotten some strange
looks. Hey, if I get to keep living, those looks are looks I can live with.
I went to the final session of the wonders and worries
session parenting group tonight. Kiana had looked at my MRI with me yesterday.
And my ride asked an intriguing question… do you do these events just to look
good for your custody hearing? And the answer, may it be completely clear I
went to all of these type of events long before the custody was up for debate.
And I go because the human touch is a whole other world. I run with a group not
just because of the coaching but I love the race reports for the human element
not the biochemanics. Livestrong has been criticized for not funding for more
cancer research but I don’t care. I am raising money for that for Duke and the
Brainpower 5k but I’ve also raised money for Livestrong because both the
science and humanity matter. And to me, the guy whose biggest worry on the
hospital bed was not leaving his family broke, there is no progress that I’m
more proud of than realizing that the humanity matters more than anything.
So tomorrow my attorney gets handed some things to pass on
to show that yep I’ve got cancer, that perhaps the fact that I’m running a marathon
with a stroller shows some part of my mind is not stable, but that the love for
Kiana absolutely is. So anyway, I did some dancing and singing. And like 2 years ago, there are no medical appointments after and I choose to have some faith that my medical condition is stable enough to where judges are not going to change Kiana's life due to some of my limitations. This weekend I’m
going to run a marathon pushing Kiana. No promises on results, you know I’ll be leaving it
out there and nothing shy of an ambulance will stop me from getting a cross the
finish line. I've gotten people who have said I've gotten them to run more, to exercise more, to do their first marathon, to volunteer more. That all feels incredibly odd. But today, someone commented today that I inspire them to love more which may be the nicest thing anyone has ever said to me. Anyway, Saturday, tt’s the gusher marathon and guess what, when I get across that
finish line a half second behind Kiana, I’ll be gushing. 
Sending you a note of support. I have a runner friend who is dealing with a glioblastoma diagnosis right now; sending support to both of you.
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