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.