Sunday, December 2, 2012

The War on Cancer

A few people asked what I was doing to celebrate the 1st month without cancer appointments… interestingly, appropriately enough, a friend from running had invited me to a lecture about running and another had invited me a lecture on Nixon’s the war on Cancer.  I went and had lunch with Kiana before either of those and made an offer to Kiana’s mother attorney that she could have a letter speaking to my stability once a year and know if I was ever hospitalized immediately and within 3 business days why (obviously doctors wouldn’t’ t necessarily know why immediately) in exchange for my medical condition never being used as a way to challenge custody while those things were provided. They suggested that I would sign something where if anything ever went wrong medically where I’d sign custody over immediately to which my answer is of course no. When, if the day comes where my custody is going to be continuously worse, I’ll sign over custody of course but just because something goes wrong doesn’t mean it’s major. We have had things look odd in blood work, in EKG, something looks a little odd in one of the MRI’s well that may happen but that’s not necessarily cause for panic, just cause for more close monitoring and I don’t feel the need nor that it’s the right thing to do that someone who couldn’t stay when they had full access to my medical records should get them well after they left… if you disagree with that… well that’s going to be something a judge can order until I am truly incapable of taking care of a child and I think I’m miles from that. People will illness and without driving have raised some great children.

 I’ve struggled with this insurance deal having had so much of my identity in my employment since so young but I am still committed to the fact that no one says on their deathbed I wish I’d spent less time with my kid and am coming to peace with it. I am volunteering again at Marathon Kids on Tuesday and Austin just opened up a brand new young cancer survivors who is about to get a very dedicated volunteer. They both know that they only get me till about the time Kiana’s about to get out of school because that’s where my time will be spent. She’s at an age where she loves being with her dad and there will come a time where she tells me to go away and I will but until then…

Those two lectures being on the 1st month I didn’t have an appointment in the end were incredibly appropriate. The first was on how humans are built for long distance running better than any other animal on the planet. It was a great presentation on how Hussein bolt couldn’t out run any common goat but humans can beat horses etc over the long haul. It helped me commit a little bit more about how I’ve got this 3 hour marathon I want to break in a few months.

The second was the war on cancer and it talked about how Nixon wanted to beat this disease 41 years ago and we’ve made plenty of progress but we’re a long way from home. The person with me had a notebook and then it hit me. Part of my frustration with life has been that I’d never really had to take notes in my entire life (I know, I know, people who always have right now are rolling their eyes on the fact that I’m writing this down, sorry). And the weakest part of my memory under the neuropsychological testing has been auditory memory and as I sent pictures off for this lumosity profile they are going to be making of me… another thought hit me. All of lumosity’s games are visual in which my memory has always come back and I haven’t in anyway really practiced repeating things said out loud or trying to remember them in the way that I have put in tons of time and effort visually. (Lumosity might have gotten an email to me). I remember the graphs from that night, the pictures far better than the lecturers. The graphic that stands the most out is the one where the FDA process has stopped many drugs and procedures, some of which have been in the system for over a decade aren’t readily available.

The face name recognition is complicated because it’s not everyone, most everyone and some people sink in. Perhaps, it tells you something that even Lumosity’s app for facial recognition is only at the beta stage. The two parts of my brain issues that have never gone up or down is “problem solving,” still daring to be a dreamer and hoping I’m not the only one, consistently at the 97th percentile. So this weekend, I went to 3 parties. The first one was all friends that I knew before this so it was pretty simple. The second 2 I knew one at except the person who took me so I started trying to have conversations with a lot of people, my style anyway and then sit and try to figure out which ones I’d met and what I’d sat. I figured odds were I wouldn’t see most if any of them so the super social guy was the guy in the corner playing “mind” games. I’ve learned to make notes about this person’s glasses, or earings, tattoos, a unique feature while I’m absorbing people’s faces. I have no great pattern there but it was interesting to try to play with it.

The lecturer at the war on cancer lecture was interesting in the sense that he acknowledge that it’s complicated. Before the lecture, outside there was a booth and like at many of the cancer related events, nods and ribbons for different cancers and like at many of the events, not a single one for brain cancer. I know, I know that it’s less than 2% of cancer and has a very low survival rate so at some level I understand why it’s neglected but the conflicting emotions about that are tough (part of that as reflected above is that the brain alone is complicated and so is cancer so combine the two…). It was reflected if nothing else in my question at the lecture, “how do we proportion the research, is it based on survival rates or on number of people who get this type of cancer?” Some of this is true but some of it is based on which lobby is more powerful or which lawmaker’s relative has the right disease. Some part of my stomach churns at that but some of it understands because well to help my daughter alone I’d try to change the world, something most good parents/grandparents/siblings would do in a way that most of us don’t for the thousands of children far away that starve to death everyday. I’ve tried to balance this by continuing to help I helped out long before, help out with things since then but keeping it both cancer in general and brain cancer in specific, cancer survivors in general and young ones in specific. It’s an interesting couple of years.  Either way, that lecture sure made me realize that cancer is more like the war on terrorism, it’s more amorphous than the days where we lined up and shot at the enemy.

Still, the day after that lecture, because I’d been dealing with the attorney and gone to the lectures and having lunch with a counselor and visiting my daughter for her lunch since she was going with her mother for the weekend, I missed part of my Friday routine of studying the route for the first time in a while. My spatial orientation has gotten better but for the first time ever my group saw just how bad some of it was in that as I got lost several times there were a few people I passed 3 or 4 times after I’d corrected the mirror. They also saw how bad some of my short term auditory memory works in that they’d tell me which way I’d be turning and when I’d get to the next turn, I’d get there. This is not a problem in day to day life because my iphone lets me cheat/compensate but in running that luxury is not there (I am glad that most of the races I run are well marked).

But we got through a month without them and it looks like here comes another. We’ll keep this war on cancer up in my life, using the running, the friendships, learning how I can to keep going. And like terrorism it’s probably not ever going to be completely clean or completely done but I gotta keep going.  That expressed itself a lot on the first weekend after a momentous month.  I finished my Christmas/Holiday cards. I ran more this weekend than I have any other (36 miles, some of it was horrible, some things are good hot and humid, running is not one of them). I did lumosity. Kiana got her first Christmas present. I am accepting that starting next month that long term insurance due to my brain issues and seizure risks kicks in and I’m “retired.” A lot of this stuff has felt odd and like losing or cheating or not doing the right thing honestly. But I hope to God that I’m doing what’s right. I know that’s at least what I’m trying to do. There’s an old story about a guy who says to God, which is how I view life some days, “I’m not always sure what’s right but I think the fact that I want to please you, pleases you.” I pray that’s true in my life.


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