Tuesday, November 29, 2011

Paper Anniversary

A year ago I got diagnosed with a grade 2 diffuse astrocytoma in my left temporal lobe and I barely blinked. Today, coincidentally, I have a follow up with my neurologist to go look at the results of last weeks EEG, MRI and neurological exams and to start talking about the next neuropsychological. The night before the biopsy and before the brain surgery, I slept just fine; in fact I kicked everyone out of the room who looked so worried to get some peace.

But here a year later, the night before just some basic follow up, I've been awake with nightmares all night and blogging here at 3 Am. I have no great theory of dreams other than that they reveal what's on your mind and that's fairly obvious. After the surgery when I had very interrupted sleep due to medication I kept waking up to these pleasant dreams of Kiana, Kiana's mom and I doing things together. Tonight, with no medications to blame, I keep waking up with nightmares of this tumor returning, of having to make the decision of when to tell Kiana's mom, of having to make the decision of what if I have to stop living with my daughter. Kiana's mom previously turned to an attorney who threatened to use my medical conditions to make sure that I would only have supervised visits. At the time and at this time, there are world class doctors who would state that was ridicoulous but it takes only an inkling of common sense to realize that if this returns, there will come a time where I won't be mentally capable and/or seizure prone. If that's my condition that's not who should be with a child. And there is no way to spin or play down the amount of anger I will have at my daughter's mother if I ever have to decide to stop living with my daughter quite a while before my death instead of getting to hold both their hands on my way out.

Still, if that day comes, I am working hard at making sure that these days count with Kiana. We spent a great Thanksgiving together, the one I've been most grateful ever, doing the Turkey Trot race which she finished without walking. Afterwards, we did the 5 mile adult race, and while I only started running races again 2 years ago, it's probably not to my credit that it was the first time I ever did a race pushing a stroller. We came in 2nd place in that division though with that little girl making sure to shout "Go faster daddy: the whole time to most everyone's amusement.

We spent Thanksgiving day at a couple of places where Kiana having a good time was highest priority since it was her friends from her daycare. The rest of the weekend was spent decorating for Christmas with some friends. She's sitting here laying next to me sleeping and I am glad to see that she's sleeping calmly, that her mind is at rest. I don't know the science of good parenting but part of it has to be reducing their nightmares. And there have been exactly zero days when I have medical appointment days when I am not ridicoulously thankful that this tumor has no known genetic ties.
Last Tuesday I did some neurological exams, some work, an EGG, a track workout and an 8:30 PM MRI. Today, I have some work, a meeting with a neurologist, back to work (I take as little time off as I can for sick time to this day in case this ever returns), a track workout and then dinner with some friends who are in from out of town. I am still grateful that while of course the buzz has died down that there are still those around who were very helpful during the process a year ago. Still at dinner tonight this will invariably be a topic of discussion. I always refer to November 4, 2010 as the last normal day of my life. I guess this is the new normal. It used to be that a headache, forgetting something was just whatever but these days I worry more with it. But there's a beautiful little girl asleep in my house and I probably won't get back to sleep so I should go pack a lunch for her. Here's hoping the results at today's exam show that the science of medicine and the Grace of the universe will let me keep doing that.

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