Monday, August 27, 2012

Against the Odds

I've now made 3 trips to Duke... the world class premier brain center. They were glad to hear about the races and the progress and I may have seemed a bit of a whiner. But I said over and over and over to them... I didn't come here to just keep breathing. While I don't doubt that you have patients who are glad to take whatever methods to just breathe longer, I am not one of them. If you read this and don't share that perspective, I respect your right to differ... but I ran marathons to qualify for Boston not just to finish them. They are both respectable goals in my book but as the president of the Austin runners club has said , I march to the beat of my own drummer.

It was a tough trip in some ways. The first time it was with the person I thought I'd die next to, the second time it was when that person and I were no longer together in reality or on paper, and this time it was over a year later. Not too long before this, someone who had shown interest in me said that they think I come with too much baggage. People told me to wait a year before making decisions like the George Clooney one I brag about so much but there are injuries that do enough damage to where people can't run again, or play football again, at least not in any serious form. So I tend to be inclined to think that this is one that I'm going to close the door to and just find my own outlets of exercise and cave in to the fear that I don't want to depend on just one person, I want to depend on no one honestly but if I have to, I'd like it to be a more spread out bet. A friend sent me a song ( that encompasses some of my sadder thoughts well.

I sat here and played that at the writing of this is still the highest its ever been, having gone up several percentile points since being unemployed since I work harder at it. Somehow it's an interesting coping mechanism that somehow life will be better if I get my brain functions back... but even as I do it, that job of working evening has let me know they've hired someone else. And the American Cancer society has let me know they found a more fit candidate...

But I sat and talked with the doctor that did the surgery and it was intriguing because the reason I chose him was because he was like me. He played the odds. He talked about how odds were this was going to kill me. He's a fairly unemotional guy and just kind of said those same type of stats about returns and growth. The Berger report (Pete Perger, apparently a world class neuropsychologist) came in and it said that less than 3 millimeters were hypercellular cells and that the rest were parenchyma, a fancy word for normal brain tissue. But I've defied odds in so many areas and can't seem to accept being an outlier in both good and bad things (primary custodian father, long term marriage divorce, 3 in a million divorce, Boston qualifier).

Ultimately, the doctor I connected with most here was the neurologist who specializes in neuro oncology who understood that I wasn't coming to Duke to just keep breathing. She read my neuropsychological evaluation at length. Both seemed to skirt whether or not the wrong portion of my brain had gotten out but in the end figuring out the past was a smaller issue to me than the future. There was acknowledgement and awareness that my hippocampus had gotten damaged and that it was affecting a variety of issues... However, the two doctors disagreed and one thought I should change to a new anti seizure medication that comes with a lot more risks and the other thinks I should try ritalin because she thinks the cumulative damage from the tumor, the surgery and the seizure had affected my ability to focus. They left it up to me which one to try and they want to see me in a couple of months so the return is scheduled for October 15th.

I showed them everything I could, the videos, the lumosity stuff, talked about the visual things and them having two very different theories that one was global affect by the meds and one was a particular part of the brain that was going to fast for me to focus and make memory, a visual comparison to someone throwing boxes at you faster than you can put them on the shelf.

I have a degree in psychology and have lots of sympathy for mental illness, having talked people into taking medications but myself being hesitant about it all my life. And now I have to take medication as an experiment, though they don't want me to start till next week. 

I know, I know I'm supposed to be grateful and at some level I am. We aren't worried about the cancer anymore but when this started... and if you read back in this blog... my fear was never dying; it still isn't. It was being less than an adequate provider for my family, losing capacities to do so, being a burden.

I asked straight up if there was any point where they think it would be reckless for me to be raising a 5 year old by myself... if I could keep training for marathons... there was no objection to either. They were fairly honest that the new medications could, very unlikely, trigger seizures in me on its own and to let anyone I run with know so I did. I left the hospital and then just went and did some hill repeats in these North Carolina hills... wanting this coping mechanism, the humor one, the lumosity one to somehow make me healthier, make me employable, make my daughter's life easier. I even said look if I can't get it back, tell me and then help me learn to accept it but they still there is a possibility with the amount of work and discipline I put in to get it back.

They picked up on the emotions and wanted me to sit with a social worker which I did but that worker picked up that I was there trying to figure out medical issues. Though multiple asked why do I come on these trips by myself. I don't have a good answer for that. I did that on the original batch of trips as well in Austin having people drop me off at appointments and others pick me up, thinking these burdens are better with no else having any of the baggage. 

Never wanting to just accept a medical trip for medical purposes, none of these trips have ever been just a trip to Duke. The first one I took someone to the Caribbean before coming, the second one I saw some friends north of Duke for the weekend before, tomorrow I head to a wedding in Miami on the way home. I'll have to find something to do for the one in October.

Still, I am grateful and scared and... grateful. Perhaps showing that no one religion has won in the modern age, after the 2 days of appointments were done, I went and sat in a chapel that was just called a healing place. I went to a boutigue store where they had accessories mostly for women who went bald but some for guys as well. The shirt I was wearing showed a peek of the tattoo and the women asked the story and there I remembered why I keep going. There's still a cub I have to watch out for. Last year, the day after Duke, I went and got this tattoo and I still have this cub to raise. Last year I signed up to donate my brain to science when I pass and this year I signed a consent form that would track me. My favorite sentence from that entire legal agreement was in response to
Are there any benefit to taking part in the study?
If you agree to take part in this study, there may be no direct medical benefit to you. We hope that, in the future, the information collected and learned from this study will benefit other people with your condition.

I can live, or die, with that.

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