I sat down yesterday with Dr. Valiant, the first neuro
oncologist this town with a well establish population has ever had. The guy
seems relatively young but also incredibly curious and brilliant. He asked a
lot of good questions and looked through my reports and thinks that these arm
twitches are focal seizures. He then asked some pointed questions which made a
lot of sense that I hadn’t though about… it was unclear to him whether the
biopsy or the surgery had caused the memory deficits. It was well brought up
that I would have missed some things between the biopsy and the surgery because
unlike this year where I’ve gotten lost… last year I was always running with
someone just to be extra careful. It was also pointed out that some of the
deficits I had on the job would not have been noticed because between the
biopsy and the surgery I wasn’t at the job I’d held for years and didn’t need
to do anything else. The tournaments I ran I didn’t run that year and while yes
I’ve run more since then, and I have put more effort to get it right, I didn’t
have one in the middle to measure by. All I had was running which this didn’t
effect.
He looked at my neuropsychological and said that just from
looking at it I would have qualified for disability well over a year ago… I am
not sure how that was meant to be comforting but I think that’s what he was
trying to do. A neurologist now and 2 neuro oncologist have now tried to get me
accept that I’m not omnipotent and that was more than a little frustrating.
Furthermore, like almost every doctor I’ve seen, he had an intern watching the
entire appointment. And then afterwards, the uninsured bill came… he tried to
sit me down with a financial advisor but at the end of the day, every single
program they have I don’t qualify for because I have that 20K in the forced
retirement that the county was taking out. I told them straight up and I stand
by this that if I have to decide between me taking those 20k today or dying,
dying is the option. Because simply put, if I die tomorrow Kiana gets $400 a
month for the rest of her life and that’s $320k or so if she makes 70. I am not
leaving my daughter broke and I have exactly zero apologies for that. He found
the results from John Hopkins, Duke, here so fascinating that he asked me to
sign a waiver that would allow him to present the case to 20 something neuro
oncologist that are having a conference. Having an unusual mind is… interesting
and frustrating. And then while we’re playing with some things, he put me on a
driving restriction. He was frank that it could be a short time, 6 months due
to Texas law or perhaps indefinite. I was and am less than thrilled. I called
and cancelled the counseling sessions from Livestrong and their cancer and
transition class trying to, as I did the first time I had a driving restriction,
save the rides for what’s necessary. I told Kiana that I can’t drive for a while
and I told Kiana’s mother so she heard it from me and not her. She wanted more
medical details from me but under past circumstances I said I’d be happy to do
it in a confidential setting like a counseling session but that I wasn’t going
to do it over text messaging.
Last night I sat and did lumosity till late at night and
pondered a couple of things. One of those was the theory that one of these
doctors came out with that the damages is to the hippocampus which could affect
all the things that appear to be going wrong, facial recognition, working
memory, other memory functions. The frank truth is that I noticed some of these
things were getting better when I was hanging out with a girl and as I
discussed that with a doctor, they said that it’s true that emotional
stimulation or whatever you want to call it can make some memory functions
better. I don’t know, I sent an email thanking everyone who had helped in the
BrainPower 5k, copied below:
Above all, thank you for your donations and support! Thank you guys for supporting the cause. Some of you guys put in honor or support or honor of me and I appreciate the support but it's you guys that deserve the honor. As we all know humor and running are how I get through the day... so it was perhaps fitting that the guy who doesn't quite have his spatial orientation got lost on the course:) There will be other 5k's but our team raised more money than any other team and that is incredibly important so let's not miss the forest for the trees. But some of you guys also had some great dedications of humor from my brain and to me the funniest one was the one that was done in honor of George Clooney. It's been a rough 2 years and we all know that but I'd rather have rough times with you guys than good times with others. If getting brain cancer helped me get to know you period or know you better, I'd sign up all over again.
And I believe that to be true. And I am not sure I can ever
sign up to put my emotions out there… but then again the hopeless romantic
today heard and downloaded a song today remembering what the album is called “the
wonders of the younger.” No one is worried about cancer right now. In fact this
new guy thinks MRI’s at the six month or 1 year mark and now they’ve all
finally started to focus on what I was focused on day one, getting my brain
back or at least as I told the Duke doctors for them to tell me that these
functions aren’t coming back.
Thinking about all of this last night, I stayed up too late
and over slept a bit. Kiana never wakes up on her own and this morning was a
bit more challenging because we had do it fast to get her to school on time.
She looked up at me from her pajamas and said, “Dad, when you wake me up too
fast, I don’t get to finish my dreams.” These doctors are doing their best and
trying to help but getting restricted from driving, being told to go on
disability, nodding to me that maybe this is as good as it’s going to get feels
like they are waking me up too fast.
The DARS program I met with was fairly realistic that if
this driving restriction stays too long, a lot of jobs become less available.
They encouraged me to try some stay at home jobs… the guy who never was a home
body encouraged to stay at home…
I don’t know. I may be a long way from home and maybe
getting woken up too fast but I am going to encourage my daughter and try
myself that even if some dreams have to be modified, I still intend to finish
them.
No comments:
Post a Comment