Tuesday, August 28, 2012

Not Cheating


Is It Cheating?
I’ve long said that I have a lot of bad qualities but pretentiousness isn’t one of them… and I hope that’s true till my dying day. I’ve struggled with lots of things since that seizure, this diagnosis, this collapse of my life. Some of it has been facing demons, some of it has been ignorance, some of it has been fear. And everything that’s gone right… everything that’s gone right is where I accepted Abe Lincoln’s old adage that if we don’t hang together, we’ll hang separately.

When the seizure occurred and I was at the hospital and I got told of this damn cancer diagnosis, the best and worst thing to ever happen to me, I told them to rub some dirt in it. I snuck out of the hospital and ran 8 miles with an IV in my arm. My friends were there at the hospital and are still here and were more concerned about me dying and I was trying to figure out how to make sure my family was adequately provided for. A friend connected me to Livestrong and they offered many many things like emotional support, medical direction, connecting me with someone who had the same diagnosis, counseling for my daughter. I just wanted to work on logistics of medicine and finances. And even then I wanted to do it all by myself.

A few days later the Austin ultimate community would announce a tournament to help raise money for my medical bills, at that tournament  the Houston ultimate community would announce the same thing, then the Toronto community sent a check, then the UT players would give me a check, then my running community the Ship of Fools would pay for my plane tickets to Duke. Someone sent a gift card to restaurants so that I would still go out to eat while dealing with all this. Tons of people would take me to medical appointments, workouts, home. With the tournaments and the running community, I asked them why hadn’t they talked to me and they answered very correctly that if they had I would have tried to stop it. With the gift cards, I threw them across the room. With each one of the sporting events I cried both out of broken pride and out of gratefulness and I can’t tell you which one was greater at any of these events. When they kept happening, I turned to Todd the executor of my will and the guy who put together the first event and told him to make it stop.  He ignored that as he promised that he would ignore my wish to be cremated and flushed down the toilet when anything goes wrong.

My sister Susan said she wasn’t helping with anything other than my tattoo and I blew her off for months. My brothers and mother wanted to come to Duke and stay at a hotel near the hospital and I told them I had a place where they could crash for free even if it was further away. My neuropsychologist wanted me to get an Ipad (which another friend paid for) and try lumosity.com to get some of the functions back. When I hurt my IT band while putting off surgery to run the Livestrong marathon, the doctor offered me cortisone and I looked up at him and asked if that was cheating? He smiled and said it was perfectly legal for both amateur and professional sports (but perhaps showing my pride, I took only one of the 2 he thought was necessary).

I’ve sat and done lumosity day in and day out, trying to pretend like the neurological rehab is just a matter of effort, gotten faster at running and better at jokes because those are my coping mechanisms (as mechanisms go, I’ll take them). In time, I realized my screw-ups and tried to correct them… Kiana enrolled in Wonders and Worries and she made me realize what I once told her wasn’t true… that she was a princess. Livestrong’s counseling classes have helped. Sitting with a minister as suggested by someone has helped. Matt Naylor ran the last few miles of the 2 Livestrong marathons as a safety precaution, one qualified me for Boston and one let me take home the trophy of Cancer Survivor winner.

I’m probably a long way from where I belong but all I can say 2 years later is that without exception the areas where I accepted help, I’m doing better than in the areas where I pretended to be, what my neurologist told me today that I’m not, omnipotent. My compensatory strategies for some of the neurological deficits I’ve always called cheating. He literally blew his hand across the air and told me you had a significant part of your brain damaged.

When I did that Century bike ride for Livestrong, I took all kinds of tips from Chris Brewer and various cyclists and that’s why it went well. The reason I’m getting PR’s in so many events is because I have great running friends. I’ve sat here and tried to keep paying everyone back, running tourneys that help them get that money back, trying to raise money for Livestrong… and that’s dumb because the best thing is to accept it and if at all possible be paying it forward. The first time at Duke I signed up for a study where I would donate my brain to science (which still stands), this trip it’s a study that will track me for the next 10 years which explicitly states that this may not help you at all but hopefully it will help people in the future. There is disagreement on what’s still showing up but no matter what we don’t have to monitor it as closely as we have been. I hope to beat this but my doctors are realistic that anyone who has had cancer, particularly brain cancer, may well have it show back up at any time. I’ve always lived like I was dying but maybe I had many parts of the living wrong. I’m a better father, a better runner by help if from nothing else than I do it more, and practice helps you improve things.  Even as my doctor told me to stop trying to pretend that I’m omnipotent, I asked if I could keep doing those two things.  He said I could and somehow that’s comforting.

I tried to take less anti-seizure medication and was found on the side of the road a few months later. It took the second time of waking up in an ambulance before I learned to wear a bracelet with contact info. Now we may be playing with some medication and there’s some possibilities that this could lower my seizure threshold… if nothing else, I swallowed my pride and took someone to that appointment with me… maybe I should do that to all appointments because frankly my doctors have often asked why I show up alone. And the guy who constantly protests his George Clooney lifestyle (some out of basic emotional fear, and some out of wondering if it’s just too much to ask to have someone sign up for so much baggage).


When going through crisis of any sort, accepting a variety of help is not cheating. Some crisises break people even if you accept help; that’s called life. I told my doctors here and at Duke that if I didn’t have a kid I’d be happy to wonder around the Grand Canyon with no meds and die when I die.  But do have a kid and am trying to do things all by yourself is a good way to get left all by yourself.

The old adage is that it’s easier to give than to receive and for me that’s certainly true. But taking help isn’t cheating, refusing blessings is cheating yourself out of the kindness that the universe has given you. I am still in touch with the Imerman angel I was connected to, still in love with Livestrong, destroyed a track workout tonight, still helping the ultimate community the best I can, and above all, still ready to take Kiana to school tomorrow. To those of you who have been along so far and with life as unpredictable as it  has been… help me to keep focus on cheating death, not cheating life.



Not Omnipotent


I have seen a doctor on average a little more than once per week. That’s not actually true for example I’ve seen 6 doctors in the last week. My favorite one has always been my local neurologist who says things incredibly bluntly. I saw him today and my neuropsychologist who recommended the lumosity thing that I still want to be that because I’m getting better scores there that I should accept that I’m okay.

Three different doctors now want me to apply for disability. That doesn’t feel right. The neurologist today said look you need to accept that part of your brain is permanently damaged. It’s the left temporal lobe and you aren’t going to be as functional as you used to be. I tried to argue with him and for the first time ever he waved me off and said, “You are not omnipotent. Accept that.” I had taken a friend with me to the appointment who had the social awareness to put their hand on my shoulder and say that. Three different doctors on the cancer and the short version is that some think it is, some think it’s not but that it doesn’t matter, we still have to monitor it and they all think I should take different medication. In the middle of the frustration all I could ask was, “Look am I still fit to raise a kid? Can I still exercise hard?” And the answer was yes to both questions. I supposed if I can’t have everything, I’ll take that.  But the one thing they agree on is that MRI’s done need to be that close together. 

The kid who has always himself by being intelligent is really struggling with the fact that his brain is not what it used to be. I talked to a couple of brain tumor survivors who told me they applied for it and got it (the lady at Duke pointed out that with lots of brain tumor types, it’s actually automatic). Afterwards I went and had lunch with a friend and in simple frankness they had a beer on sale, Boston Lager which had come out this year because of the Boston Marathon and I for the first time in my life, had a beer before lunch. I cried to my friend and she said you’re doing fine; welcome to being like the rest of us. I don’t know what the polite or humble way of having been valedictorian and a national merit finalist and suma cum laude with 2 degrees accepts that his IQ and memory no longer match… I went and saw the neuropsychologist afterwards and told him that 3 doctors want me to apply for disability and he said yeah that’s clearly not your style. We had a good conversation and I was glad to see him advertising the Brainpower5k.

I was told to tell people that this may trigger my seizure threshold and so I did. I emailed the group I train with, the Austin ultimate people that I help run events for, the people I run with, the group I’m coaching and told them if they wanted me to pass on coming that I understood, having run events and worked in the legal setting I know sometimes people prefer to avoid liability. And I told them like the doctor said that if I am found collapsed again that I do need to go to the hospital unlike signing it off like last time which was fine with him. 

I’ve started watching a series called Boss about a guy whose mental facilities are diminishing due to a cognition problem. Wanting to hold onto power, he doesn’t tell people that his brain is failing him.  I watched an episode today but I’m not going to be that guy. I am going to hold onto what I got but I am going to be honest and open about it and if it ever fails… it fails but I am not going to live in fear. I’ve started running with Kiana again with an app that can tell people where I’m at. After the appointments I went out and ran 6 800’s and I destroyed them. I’ll take that coping mechanism. And then I got home and Kiana was dropped off by her mother. I told all the doctors the same thing…  if I didn’t have a kid, I wouldn’t be taking any meds and I’d be wondering the grand canyon and when I went I went. I bought a house 5.5 years ago because it was a block from a good school. And I’ve walked her there both days and cried both days. One of the tumor guys said, think about your kid you want to put your pride and put your daughter in an apartment? They definitely went for the sinker there. Still, I got home and what I applied for was a job that trains volunteer to help those who are dealing with terminal AIDS and cancer patients. 

I’m not omnipotent. I can still run hard and I am still fit to parent.This morning as I was telling Kiana it was time to go she said I had to wait because she hadn't gotten her lipstick on yet... I pray to whoever is that they let me keep those moments as long as possible.

Monday, August 27, 2012

Not a Victim

Today was Kiana's first day of school. I ended up coming back early from the trip and missed the wedding I was catching on the way home due to a hurricane in Florida because there was no chance I was going to miss Kiana's first day.

But I am also trying to focus on not being a victim. Two different sets of doctors have encouraged me to apply for disability because of the memory issues that my brain has (if you read this, you can tell some of it is unclear and that some things repeat themselves, and the guy who hosted me at Duke noticed I said something 3 times in some conversations to him. While that's fine for everyday functionality... perhaps it wasn't the best in a place of employment). There are 2 different theories as to whether it's because of the medication that I am on for seizures so they want me to consider another one that comes with more side effects. The other theory is that it's a combination of the surgery , the cancer, and the medication doing damage, essentially aggravating something like ADD (or if you consider how much I exercise, I like to think of it as ADHD). They left it up to me which medication to try first... that's brilliant, world class doctors letting me pick which one to go with. I applied for disability on their advice but that at some level was gut wrenching and feels I don't know, odd.



I went with the ADD type medication first (I'm going back in 2 months to evaluate how it's going) because the other one comes with more brain risks inherently but this one comes with more possibilities of seizures. In the interest of being open, I let both of the running groups I go that while unlikely, the possibility of more seizures maybe on the horizon. But I also want to improve/continue/figure out how to not be a victim and plus I have to train to do that half marathon pushing a stroller so while some days I read her stories, some day I play some games with her on the IPAD, sometimes I just send her to bed, I did something last night and will again tonight that I hadn't done I ran 8 miles with her last night pushing a stroller. Tonight I'm going to run 5. I want to teach her not to live in fear... and she doesn't have much. Her fearlessness in fact scares the crap out of me. I dropped her off at school today and while she seemed a little nervous it was me that cried. My first job is to give her roots and then to give her wings. They are both difficult.



But I also sat down with a friend who is more into eastern practices... she comes from a family with neurological issues and says she's never taken medication. While I'm a fan of her, she definitely comes across with issues at times but overall, I'm impressed so we talked and she definitely pointed out some authors and yoga exercises that I am going to try. I don't know what I'll win or lose at in life but even as I struggle I hope the end of the story is never that I gave up.

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 (http://www.youtube.com/watch?v=hDvPCKH1_hc) that encompasses some of my sadder thoughts well.

I sat here and played lumosity.com 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.


Friday, August 17, 2012

Duke Confessional


I still have confidence at some level in my brain but it continues to be questioned. I’ve shared many medical details before and way too much information but let’s take it to another level. I don’t know how wise that is on a blog but honesty is what I prize the most. All of the information here has been shared with others before but I suppose if you’ve cared enough to still be reading this… I thought you should all have the details that I’m covering with Duke next week. Some of it I haven’t shared much because it’s tough to admit. Some of it was always trying to figure out a way to overcome it, to not be vulnerable, to think that somehow willpower alone would take over and I’d win… I am glad to be training for things like the brainpower 5k and to be breaking five minute miles. I did my first 2 a day workout yesterday since high school and it was an out and back and I high fived lots of people on the way back while I was in the lead of the second workout because I like being part of a team. My brainpower 5k team is one of the bigger ones and full of good people but I wonder if I fade or lose these capacities how much lonelier this journey will get. One of the songs on the brainpower 5k playlist is Kryptonite with lyrics I hope someone will sing to me someday:

You called me strong, you called me weak,
But still your secrets I will keep
You took for granted all the times
I never let you down
You stumbled in and bumped your head,
If not for me then you'd be dead
I picked you up and put you back
On solid ground
If I go crazy then will you still
Call me Superman
If I’m alive and well, will you be
There a-holding my hand
I’ll keep you by my side
With my superhuman might

The biggest issue of it was always the worry that if I admitted too much of this and it became public that a woman who we mishandled all that with the diagnosis would make it to where I spend less time with my child but when the divorce was happening I offered her primary custody if she would keep the house and dog so that the upheaval would be less. She passed on that. I asked how she wants to handle things if they go south and she said if I’m ever in treatment she could watch Kiana that day… One of my friends pointed out that I had no need to worry about losing custody as this being Texas, me having brain cancer, and unemployed, she’d have no problem getting it if she actually wanted it. We all have to get through the day somehow but I guess a year later I realize that if someone can leave you in the hardest time of your life and have no sympathy anywhere down the road leaving you at your brokest point when you paid off their undergraduate and graduate degree, they have an incredible skill at disconnecting and it’s incredibly depressing to me that she could do it with both me and our child.

As I head to Duke where 3 (maybe 5) world class neurospecialists can’t seem to agree on what’s going on in my brain (1 thinks they did surgery on the wrong part, one thinks it’s cancer, one thinks it’s not) but all agree that it shows stability enough to where they want to monitor it less (at least at this point, I’ll be at Duke next week and it’ll be the first time they see me in a year).
But let’s do some confessions. The running group that I trained with this year I was the fastest on and on routes that were out and back, some of the time they didn’t see me on the way back. They’d teased me about how they thought I cheated and without exception every time that happened, I’d gotten lost. I had a GPS watch on so I knew how much distance to cover and I had enough wherewithal to always get back to the starting point.  Somehow I haven’t found that watch in over a month and I’ve spent some time looking.

My memory is not all it used to be. It’s still in relatively fine shape but eloquence and jokes get me through the day when I can’t remember things. But there are some situations where I can’t cover up some of the things I miss. I went to one interview with a shirt inside out… (someone noticed it later and I joked about how it was more stylish, that job never called back).  I went to another one with my zipper done, we’ll call that one coincidence. I went to one with a hole in my pants that I didn’t notice. I don’t know how I am missing these things. Some of my spatial orientation is off somedays. The day before the Boston Marathon I got lost in Boston even though I’d pinned things on my iphone (friends have blamed the weird Boston layout; at some level I question my memory). I couldn’t find it despite desperate attempts and finally made a friend who interestingly enough by taking me to the first place I’d gone after the car was able to drive me backwards… memory is an interesting thing. There’s a specific game on lumosity for that I keep using and I work much harder at looking at the routes beforehand now that I’m coaching.

I am helping the person run regionals this year though I’m still very much involved, they are in charge. They  have questions and things that I used to do with just a few moments of effort I go back and look at my notes that I did 2 years ago, a few weeks before the seizure.I left my car keys and couldn’t find them twice this week… Once I found them after 45 minutes, the other one I found them in the car. Some friends think it’s stress, maybe it is. But these things worry me, especially with a 5 year old who is a few days from starting school. I have her list of school supplies and it’s like 10 days away and the emotions have already started. I want to be an adequate father and when I share these worries, wondering out loud at what point it becomes reckless to, people have pointed out what choice do you have and that over protecting your child can be harmful too. This is tough to a guy who never put money in savings until he had a kid… never bought a house as an investment till a month before she was born to have it be a block from a good school.
There are days the muscles spasm. Until today actually it had never occurred to me to videotape it but I did so. A slight spasm in my right hand had been noticed during the neuropsychological evaluation before but somehow this one in my right arm and it has happened in my right hip seems worse. I’m an athlete so I’ve noticed them before during tired muscles but I haven’t been doing any exercise on the right side of my upper body.

Interestingly enough, I had dinner with one of the people from the Brainpower 5k who has read this blog and says you blog some incredibly honest things but do you use that as a way to not share it with human beings in front of you? It was a great question. I don’t know the answer but if that’s a sin that’s one more thing here to confess.  

Wednesday, August 15, 2012

DNF


The day I broke 5 minute was 104. I mentally decided that the heat couldn’t possibly defeat over just one mile. Everyone after said it was impressive that I broke five period but especially in that heat. I didn’t notice the heat until well after the run at which point I coughed like there was no tomorrow but tomorrow came…

I’ve been watching the Olympics fairly consistently; I’ve even had the privilege of meeting a couple of those athletes. People have to listen to their bodies and the body apparently doesn’t let you do what you train for sometimes though that should be second guessed (http://www.reuters.com/article/2012/08/09/oly-health-extremes-day-idUSL6E8J94R120120809) . The one thing I just am trying so hard to avoid is something those athletes had to do, DNF, did not finish. 

I had gone Saturday night the neighbor brought over a friend of hers to say hello. He also had issues in his left temporal lobe and, before she brought him over, she said he’s had a few rum and cokes so if he sounds so off it’s probably that, not anything in his left temporal lobe. He was a happy drunk and he started telling me about how he used to be a Halliburton engineer and make tons of money, lost his insurance, the bills have piled up, he is making $8 an hour and was frustrated that they never let him get overtime. I had done something during the run that morning that had me leaning on one leg and he asked if I’d also lost my balance. I misunderstood what he said and thought he was talking about other things and almost answered way too heavy of an emotional but then he pointed at my legs. As he kept telling his story, a story similar to one I’ve listened to from a few people, I wasn’t prepared for it. The rest have happened planned or random but this one was while I was hanging out and watching Kiana ride her bike. And his left temporal lobe worked well enough to where he noticed that I wasn’t taking it well because he said  hey pick your head up, this isn’t your fault.  I only picked it up briefly. It may have taken the rest of the night to get it back up. I was hanging out with a cute girl who, in that protect everyone else from my disease mode that I get into, definitely picked up that I was off. In that mode of protecting anyone from ever getting to connected to the guy who has this… it ended within 48 hours. I am not quite sure I share those instincts that ANY day above ground is better than any day below it…

I watched the Olympic marathon at an Austin Runners Club and watched the winner of the Austin Marathon have an injury where he couldn’t finish and he looked a bit sad to have his first marathon where he DNF (did not finish). There were some injuries on some shorter courses where people limped and kissed hurdles but those were shorter distances. I broke a 5 minute mile but I also have a marathon I want to get done. You can’t limp for 26 miles.

Still, today I went out and ran to the brainpower 5k playlist, a playst entitled IQ, something I’m still trying to keep, to raise to push, to believe that somehow the best days are still coming, a belief that really is hard these days. 

I applied for a job at the American Cancer Society yesterday. I applied for jobs today at the city of Austin leading recreational sports for shorts. They may be a long shot and I thought maybe it was too much to dare to dream of but…  I really am trying to avoid ever having a DNF on my record. I also don’t want an I don’t try. I’ve always said that I’d rather regret things I have done than things I haven’t done… but you can only make mistakes once, the second time it’s a choice. Or to quote Arthur Miller…maybe all one can do is hope to end up with the right regrets.

Friday, August 10, 2012

Not Paralyzed

I need a job soon. I just do and I’ve been applying and some of the weakness is simply confidence. When a job passes you up when you walk into an interview and are unsure of yourself, there is no way to blame them for that. At my previous job, it was hard to trust them but trust begets trust and lack of trust does as well. There were mistakes I started to make because of the surgery, not because of the surgery because of some deficits that I’d come to recognize and didn’t know what to do with it. My boss would say things to me like well no one else makes those mistakes (and I used to not make them) and I didn’t and don’t want to make excuses but I asked if she had a checklist… she didn’t so I made one, a few days before being terminated despite the mistakes going on for a while.

I am actively trying to just adjust but I did a bit of volunteer work back in high school with alcoholics anonymous and part of that is simply admitting you have a problem and with all that has occurred in the last year and with being nervous about having some of my deficiencies documented because of fear of the label and because of fear of losing custody well… I am not sure I admitted enough of them to anyone myself included. Still, people wonder what I do all day. I spend a lot of time on lumosity and the scores keep rising. That helps with confidence, with self trust. The car got fixed and I picked up a couple of pairs of plastic that I had found and the mechanic returned them to me and said that they weren’t part of my car, they were part of 2 other cars and said, “Hey you’re not the only one who hit that curb.” Still, Kiana was in the back of that car and it’s nerve wracking but my mechanic, who I’ve used for years, has their slogan, if you don’t have a mechanic you trust, give us a try. Somehow it’s the fact that they get all that which matters to me. 

Going back to school to become a teacher it turns out is not realistic. Graduating with honors from college may be the dumbest thing I ever did. My liberal arts college created an honors program where instead of the standard general education classes you were put in didn't happen. It instead was a great works approach where you read classics from many many cultures and places (if you've ever wondered why I quote so many things, now you have a bigger clue). It would be thematic like a class called Heroes where we'd read The Odyssey, Don Quixote etc or Scripture where we'd read the Koran, the Bhagava Gita, the Tao Te Ching, the Old Testament. Well it turns out that unless you have standard classes for teachers to have certification you have to have had standard classes or go back to school to do a lot of undergraduate work... and then get the certification... The two school I spoke with told me there are plenty of loans I could get but... well taking out 20 grand in loans for the next years is not realistic after the last couple of years. There are some dreams that cannot be.
 
I took time off as suggested for that pulled hamstring and ran once between that and the next timed mile and for the first time in 15 years, I broke a 5 minute mile last Tuesday, 4:58.5. There were about 100 people watching and probably a couple of hundred that heard me scream. I am not paralyzed. I can still run. I can still think and I have to learn to adjust to my deficits and as the neuropsychologist recommended learn to compensate which for some reason in my mind has always been cheating… I didn’t get 22 seconds off the mile in one year with just luck, it took effort and TIME. I have to learn to be better about that whole taking time thing. Finding a job is taking a lot more time than I have left for but the lumosity scores rising, the timed mile happening, the fact that I’m helping promote the brainpower5k, paying it forward, those things help me think that maybe there’s some thing that helped.

My birthday was on Wednesday, I turned 32. Last year for my birthday (as this year) I did absolutely nothing for it other than do something with Kiana. Last year I took her paddle boarding but this year since she was with her mother on an extended visit I just went and had lunch with her. Last year for my birthday I heard about for the first time ever and signed up for the brainpower5k. This year I made it my facebook status, people were kind enough to donate $308 to the cause. 

I finalized the playlist for that brainpower 5k, where I hope to break 18 for the first time. Realizing that even though I’m nervous, I’m frightened of the past, of the future, of the present but that I realize there are both good and bad things there… that well I’m not paralyzed. That’s the last song on the playlist, entitled IQ, something I’m still trying, achieving and hoping to raise and the last song is I’m not paralyzed, something I dedicate to a significant part of this journey. 

Well I'm not paralyzed
But I seem to be struck by you
I wanna make you move
Because you’re standing still
If your body matches
What your eyes can do
You’ll probably move right through
Me on my way to you
I don’t have a job but I am going to keep moving and not standing still.

Tuesday, August 7, 2012

Trust Your Brain


At some level, I am afraid to trust my brain. And I’ve tried to protect people from it. When the seizure first occurred a while back, I wasn’t allowed to drive. Even as I was getting ready for the surgery, I talked to Kiana’s mother (before I was aware she was leaving), about whether or not I should EVER again trust myself to drive with her in the car. Yes, I have medical clearance and at some level of course its less than consistent to say I’ll drive with other people on the road but not with Kiana in the car but if anyone has a child that they don’t put in front of anyone and everyone else on the planet, then they are unusually cold in my point of view.

When I collapsed in March, that was the last time I ever ran pushing a stroller with Kiana in it. And since then even as I begin to train to run a half marathon with her and with my mom… well I’ve done it all with someone and/or group runs. 2 days ago I had a car accident. As car accidents go, it was “minor” I didn’t see a curb that divided two lanes and ran right into it. It didn’t feel like a big deal but then the air conditioning went out. I took it to a dealer yesterday where they essentially said I broke it all and that it was totaled because of the alignment, the air conditioning etc. Keeping up with my life traditions… well and being broke… and the fact that I haven’t had a car accident since I was 19, I had only liability coverage. I don’t know how deep in the hole I can keep getting. But what worries me above all is that Kiana was in the back seat. No one was hurt, no one was anywhere near injured and Kiana didn’t seem shaken up but…? Back when all this started, when I originally blew off Livestrong’s offer to connect me with an imerman angel and then as I found out how rare this was, they connected me with a girl who had the same diagnosis. The left temporal lobe is the most active, most electrical part of the brain and the diagnosis of tumors there almost always come from grand mal seizures (as opposed to some of the other survivors of other brain tumors I’ve met since then who it came from serious headaches etc). I didn’t have a seizure but there are times I don’t see things. There have been times I can’t find something despite the fact that I look hard for it and it’s when things are the same color. With some memory issues, with some language issues, with some of these vision things, people try to remind me that people have these things sometimes. Where the balance of acknowledging that and realizing some of these things have never happened to me until this all started… is not easy. Having lost my health, my job, my spouse, my balance on the side of the road… have made me less and less confident in life.
I sat and talked to a few friends last night trying to figure out how to trust your brain or not. I have decent social skills in group setting, if nothing else demonstrated by the fact that even when I am unconscious and waking up from a surgery or a collapse in the middle of the road or a seizure, I am telling everyone how much I love them, how good looking they are, giving smiles and thumbs up.

I am heading back to Duke in a couple of weeks. The doctors disagreeing with each other and so they want to talk to me in person and do some diagnostic stuff on their own. I received the letter yesterday and they made it August 21st and originally I tried to reschedule it but the car deal somehow made it more urgent… I met with my counselor last night and called some friends, wondered out loud if you don’t trust your own brain whether or not I should be the primary guardian of my daughter. I emailed Kiana’s mother to let her know about the Duke trip, and a woman who only sees the most wonderful kid the world has ever known literally wrote back that she wasn’t sure whether or not she could deal with the gas of having Kiana at that time. That type of reaction continues to be a huge sale on how I should conduct life.
I really do think about going to school about becoming a teacher and I tried taking the GRE and I couldn’t finish the test in the time allotted, a frankly disturbing and scary thought for the kid who was often the highest grade and turned his test in first.

I have some confidence and trust in my own brain lacking, I at some level am avoiding running nervous of the heat, my finances going to lower levels of hell and currently I have no transportation. Someone said yesterday the fact that I notice all these things makes me not positive… I don’t know. Somehow I  hope the fact that I am still going is a positive thing.

Sunday, August 5, 2012

The Responsibility of the Cured


There are times when we’re discouraged, when the kicks of life have got you down. I am at that place but it’s okay. I went to the running group I was coaching at 4 AM yesterday, woken up perhaps from the fact that I hadnt’ been exercising due to a pulled hamstring, perhaps from the unrest of the last few months. Then I remembered what my friend Joe Lackey said and while he said it far more gracefully and politely, it’s good to be reminded not to be a whiner. I have some deficits but I didn’t lose nearly as much as so many… and I’m alive despite having a brain tumor. My wife left unexpectedly… but, as he said, despite being a man, I have primary custody of the most wonderful child the world will ever know. And yesterday, I remembered that I have the responsibility of the cured. I went to my running group and planned to run 10 miles but ended up with the hamstring hurting but still ran all the way to the top of the workout and cut it a little short but I am going to do some exercise again today. By coincidence I had 6 social functions ever (the most I’ve ever had in one day), 2 breakfast ordeals, 2 going away parties, a house warming party, and a birthday party. I was awake for 22 hours straight. Someone immediately noticed I wasn’t wearing the bracelet so between two of the functions I came home and put it back on.

Then I talked to people at a running event about the Brain Power 5k and the Austin Runner’s Club will be putting it in its newsletter this week as will Austin Fit. A couple of people joined my team and others are talking about doing it. And I hope several more people will donate. If you go through life with what my life has been and have no emotional issues with the toll, I am impressed. I haven’t but there’s a parable Jesus tells, my favorite one of his, about two sons who are told to go do some work and the first one says yes but doesn’t do it and the first one says no but does do it. The one who does it, as it should be is the better son.

Confusing medical news, not being able to find a job, my daughter being gone on a trip to Oregon with my mother, not being able to exercise can make for a tough week where you miss the forest for the trees but I need to always be the son who does the work. I have no idea what the hell will happen with Lance Armstrong’s case, nor do I care. But his doctor when he beat it reminded him that he has the responsibility of the cured, to try to make things happen for those who didn’t’ survive. My memory may still not be back up to presurgery level but I can’t forget that. 

Friday, August 3, 2012

Home in The Wilderness


The children of Israel made mistakes that apparently cost them the promised land, something that is arguably never really arrived to them. Who knows what their state of mind was but somehow I hope they were comforted by the possibility that it would go to their children. I never expected to be a father. Kiana’s mother and I had decided not to have kids while she was on birth control… and a few weeks later would realize she was pregnant even as we made that decision.  I’ve never once called that child an accident. She was always a surprise. And the best surprise I’ve ever known and that the world can imagine.

Kiana’s mother is still at best infuriating. She has her second extended visit with her next week where because the daycare she’s been at “allowed me to visit” she put her in another where she “allowed me to visit” but not to pick her up, that her boyfriend could do that. If there’s anyone in the world that can explain that to me, please do so. I don’t know if it’s jealousy or some issues with control but who tries to keep their children away from the primary custodian? Who tries to keep them away from their parent anyway?

Ironically, the job thought me not qualified at a call center. It was through a marketing agency who thought I was qualified but the others didn’t… Overqualified, under-qualified, and no are the answers I’ve gotten about employment.  Even willing to take a paycut I can’t get a job right now… this is starting to get scary.

The doctors disagree with each other on a strange level as mentioned before but perhaps the strangest one is weighing and thinking that perhaps the wrong part of the brain was removed… This feels like the old play about whose on first…? Still, the comforting part is that they are all in agreement that wherever the hell we are, we are in a place where the monitoring this closely is no longer required and where it looks like we avoided a death sentence.

Even discouraged as I am these days, I remembered the end of the marathon I qualified for Boston. I was hurting around mile 20 and, per medical advice, the doctors had someone finish with me and when they joined me, they said, you know if you speed up, you can probably break 3 or at least come in under next year’s BQ time. I thought about it and I said, “There’s only one goal here.” And I got it. 

I am trying to focus on the one thing that matters, Kiana, a child who was the best surprise of my life. So realizing that I am not really that strong of a candidate for anything else these days, I took down the Livestrong poster in my house, the stuffed animal of the astrocytoma and even the bracelet. Perhaps in one of those silent nods, I put it in the Boston shot glass intending to put it on again I hope or is it to put hope on Again? I’ve taken down that infinity necklace that hung in my car… perhaps giving up on relationships. I’ve taken down now some other things that were symbols of hope. I let the ultimate crowd I’m not running tournaments anymore and also have let the marathon group I started coaching that I won’t be there. Some of me is breaking down, exhausted I supposed.

But the one thing I got that is there until I die and probably well afterwards is that tattoo, the lion and his cub. I’ve been listening to Aerosmith’s “Who says you can’t go home?” . It is a great song and it has some great lyrics, who says you can’t go home, I’ve been all around the world and as a matter of fact, there’s only one place left I want to go, who says you can’t go home. And I still water the trees daring to dream that hope, home are going to stay. 

I have no idea where the future lies because some of the things I so thoroughly believed about the present and the past turned out to be lies. I’m still working, open to possibilities. I work on lumosity.com, tweaking things, realizing that I am getting better for the first time ever in a year, up 15% in the last 4 weeks. My neuropsychologist, the one most concerned about how the brain functioned and now just about keeping me breathing out of the local team thought I went back to work too soon. I did that because I assumed that in the end I would be fading and wanted to provide income to my family as long as possible. He thought I should have taken more time off and worked on the neuropsychological training as I have been doing a lot now (use it or lose it). I spent some time practicing for the GRE today in case that route happens. I am not closed to possibilities but I just don’t know where to focus right now and I want to absolutely do it with that little girl. I’ll take my home in the wilderness if I have to to get her to the promised land.

Thursday, August 2, 2012

What Makes The World Go Round


I'd worked full time since I was 14 then I lost my job unexpectedly and have gone the longest I've ever been unemployed... never called in sick ever and I've had well over 100 medical appointments in the last 18 months... married my high school sweetheart and she left in the middle of a mess... ran since I was 8 years old and after being found collapsed after a couple of trophies, I'm way too afraid of the heat... how do you get confidence, faith back when so much has been whittled, no whacked away?

The medical system and lack of communication is frustrating. This is one of those days that overwhelms you. I may have done it all wrong keeps going through my head. When the Livestrong media company called, they pointed out they didn’t want me to clean the house too much and I made the same joke that I often make which is absolutely true, “When people notice the mess, I say it’s not always this bad. It’s usually worse.” But when they came over to shoot the video, the guy I’d talked to tried to prompt the joke to his team and said, “Is it always this bad?” and despite it being something I always say… well I forgot to. I remembered a while later and made the joke and everyone laughed of course. That was always one of the “tools” that my neuropsychologist said. They get me along well socially which is frankly how I’ve always paid the bills but turns out it’s not doing it now and having majored in psychology and religion, fascinated by the things that drive people… and that's not paying the bills and that’s scary. Having learned the health insurance mess so personally first hand, I’d been trying to get Kiana’s mother to make sure Kiana put her on her health insurance but now I realize that hers while better in the case of an emergency than mine was, is $360 a month. I sent less than a polite email to her mother about not providing me any information and then providing me the bill. Still, I will find a way to pay it because this way is obviously better than if something were to go wrong with her medically. I had been asking her for 2 months and she had provided no info and got around to providing it after she’d signed up which according to the decree since I expected to always have her on my insurance intending to always be on a very solid plan, I signed up to carry hers (by Texas law, it’s usually the noncustodial parent who is required to pay for health insurance but I offered to take this on myself). Ironically, I could have actually bought better private health insurance for a child because as it should be health insurance is cheaper for children.  

I’ve gone out with a girl a few times in the last few weeks for the first time wondering if I should be open to something serious since I’m a little more at ease with not dying; people think it was the pain of my wife leaving me that was stopping me but it really was the same thing that probably helped my ex leave, I don’t have capacity to ask people to sit around and watch me die. This girl is great and fun to talk to and solid all around in many ways but I do wonder you know what the hell I’m doing. But I try to not tell her much about all the mess because ironically I think no one should sign up for that but I wonder if hanging out with her has been some of the boost of confidence. She’s established in her career and a solid athlete and somewhere I want to just tell her to go away, or as my friends say, let her know she can do better. But who the hell signs up for a single dad with known health issues, a tough ex to deal with and no current income? 

I still have not given up on dream type jobs and still applying for some but this has been one rough roller coaster. When this all started, I had $10,000 is savings for a rainy day, naively thinking that was enough and it would have been for a car issue or a house issue or even a broken arm from sports. It turns out that’s a joke. But all that has come just keeps taking some steam out of me. The one coping mechanism right now… running is on hold with that pulled hamstring (I’ve never pulled a muscle before) showing up as a serious bruise on the back on my leg… I go to my running groups where the people I coach and train with are in a different league than me in all types of ways. I miss the cycling; there’s a reason world class runners come out of poor countries but no world class cyclists do. The equipment is a different deal. I got accepted to Harvard once upon a time. I used to work in sales and make a lot more money (and a lot longer hours, where they bragged about me doing things well into the evening). I’ve volunteered for a million things in my life, helped out with various things. This has been the meaning of life to me. It helped at some point when the ultimate community helped with the medical bills when they started and the running group helped with the trip to Duke. Long before any of this I did an interview for Junior Achievement an organization that teaches kids and taught me how to deal with money. I was the lead fundraiser for them for the first marathon relay I did. I’ve helped raise more money for non profits in the last few years than has ever been in my bank account. I was amused that someone sent me an article that too much altruism can be found in the brain, of course in the left temporal lobe (http://www.sciencedaily.com/releases/2012/07/120711123005.htm). Did I do it all wrong? Emerson wrote that most men live lives of quiet desperation… well mine has gotten obnoxiously loud some days.

Wednesday, August 1, 2012

Make It Or Break It


One year ago today, I was at Duke. My doctors from there and here seem to be divided on where to follow with some thinking I need to do follow up with only an oncologist, others with a neurologist, others with both. This reminds me of when this all started whether or not they could even agree on whether the surgery is necessary. 

I didn’t break that 5 minute mile… and I’ve looked around to try to find another race to do it. I was in good enough shape for it but in my insistence on trying new events I first tried the hurdling and my friend took a picture showing that I was clearly born to run… not to hurdle and then I pulled a hamstring. Nothing horrible really, there was a sports guy there who tried to massage it out and felt it and said yeah you definitely did something. Still I went out and gave the mile what I could… and just didn’t have enough sprint at the end and came in at 5:03… I went out and defended the only title I’d gotten in ultimate Frisbee where I was playing with everyone 8 years or younger than me and while I was not at my best, I did catch the winning score.  I’ve been relatively responsible and rested some this week, even skipping a 5k today for that and to make someone’s birthday party but I keep thinking about a race in Arlington in 2.5 weeks a mile race (http://www.roadracerunner.com/re_82715/GodsHandsFeetintheWorldIII5K1MileRunWalk.html). I took 3 years to join cross country in college despite being faster than everyone by the 2nd year because I thought it was silly to drive hours to run 5 miles and now I’m thinking about doing it to run 1. But there is a decision I’ve made about goals. I don’t want to keep doing the same thing over and over and over. I never had and I don’t want to start now. If/when I break 5, I’m done with mile races that are well out of my price range (those track meets were $10 and that race is $5). If when I break 18 on the 5k, I’ll do that as well. 38 minutes on the 10k. 3hours on the marathon if I get a job that allows me to have the time to train for that (If not I’m already retired because the trophies sit on the mantle, but they don’t pay the bills). These are not random times, they are what’s considered elite times, times that will let you get in the first wave of most races that create waves. I’ve done it with the half already so I’m not sure I’ll get back to any of those, though it’s hard to walk away from the one that holds my bib number of 911.

The job offers haven’t come where I want (the ones that came were a long time ago and again, I should have taken them). I think this is a combination of many things. One is my bluntness and when you don’t spin or lie about the fact that you parted ways less than well… I am not sure how that comes across. One is that the job I lost is the only one I’ve really had for 7 years (when you can’t get a reference from your last place of employment and the last place I worked before that was bought out and the place I worked before that was volunteering internationally. Amy, a friend from work, always said I had an old soul and as I realize at many of the events and places I volunteer and help with, a lot of it (like the Travis County Elections yesterday), I am way way younger than anyone else. I used to attend the retirement system meetings and was the only one under 40 much less 30. Maybe that’s what I was prepared for death so well…  My attorney has let me know they are talking about some severance pay and I want to part amicably but it’s also bigger than being just about the money in my screwed up brain. 

Another issue is frankly my confidence is pretty shaken up. I honestly have no doubt that I would have broken 3 in Austin had I been able to think clearly and not think of an ex and her boyfriend who had cheered me on the year before at the course. But that’s not the only reason my confidence is pretty shaken up from the last couple of years. I’d say my life has been whittled away but it’s been whacked away. My main defining quality, my brain has some missing components. The good news is that the one thing they all agree on is the fact that we don’t have to monitor as closely as we have been has boosted that at some level. And that confidence, perhaps, the extra spare time, perhaps the fact that the stress of dealing with the ex employer is on someone else… has boosted my lumosity scores. They are all higher than they were 4 weeks ago and with 1 exception, memory, they are all higher than they were pre surgery. Like that 5 minute mile, it’s nice to have some measurement of progress. 
 
That lack of confidence though has translated into some of those interviews. The counselor I’ve sat with, I’ve always told him that my fear was that a memory error could cause issues. I don’t believe it ever did for any of the kids I worked with, including the mistake that caused this job to end but…  I have to grasp that my memory not being all it was is not bad. The fact that I got a 5:03 mile is not as fast as I want but it’s not a bad mile. But in interviews, you can’t go in and not believe in yourself. I have to find this somewhere. Hell, the brainpower 5k which I won last year, which I raised the most money for (if you read this and haven’t donated, please do so), which I switched a custodial weekend for, and which I’ve helped some organization details with wants me to write up something as to why this race is important… and I can’t figure out how to do it.
Anger isn’t entirely absent as I sit here and reflect on these make it or break it moments. This job stuck me in a closet when this started and my wife of the time who I had paid for both of her undergraduate and graduate degrees left when I was broke and now I’m even more broke… But in my clearer moments, I realize that some of it surely was my fault and perhaps as significantly, those who couldn’t be human during your weakest moments or those who you failed to show your humanity to, well, it may be a place to heal if given that chance or a place to be grateful to be separated from. 

I don’t know what’s coming. I think about testing this brain and going back to school which was the plan many many years ago. I was going to put my ex through graduate school but we had the best surprise the world has ever seen and so that delayed me going back to school, and then there was a tumor, and then there was a divorce. I think about it now but it’s not like I can get in tomorrow and it’s a huge risk when I’m trying to raise a kid… and back then it was about academic prowess now it would be about finding a job I would be okay giving 40 hours to or so and that was worth giving up more years of my life to. 

I set August 1st, 2012 today as a deadline for many things. I was so hurt last year at all this that I was fairly closed to ever being in a relationship. Some people said to give it a year and if I was still there well then so be it but if I wasn’t then to consider it. Back then I also didn’t want to have more kids because it felt reckless to bring another child into the world with such a clear expiration date. That expiration date is gone now, which feels strange. 

I’ve applied for some dream jobs with marathon kids, the American Cancer society, with Livestrong but they didn’t get me anywhere. Today I sat down with a temp agency and realize it may be time to accept that money, at the end of the day, is what makes the world go round. It was the same one that had done those tests that made me so uncomfortable. The results were intriguing to me for 2 reasons. They were high enough for them for a temporary position (a 3 month contract) but there was one fascinating element to me. The job requires me to be bilingual to earn $14 an hour (si lo soy) but in the tests my results were higher than average but they were almost perfect in Spanish (no more than 1 question missed in each of those). Language was always a risk and after the surgery, it took a lot of focus to understand my mom talking in Spanish, that would be gone less than 24 hours later but it was evident to me. Now these aren’t neuropsychological tests nor is there a before and after picture but it was very very interesting.
Showing something about the county or the insurance company or the world, yesterday, YESTERDAY, the life insurance forms finally came and they got a check in an envelope immediately making sure that if I go out, well at least this child has something that I can leave her at that point. I am not sure why but mailing that check made it a little easier to breathe. 

I don’t know what’s coming… that’s the story of life, certainly mine. But August 2nd last year, Kiana was on a trip with my mom and I was getting a tattoo that symbolized her and I together. It was shortly after the divorce was finalized. The tattoo is still awesome, she’s with my mom again but there’s ice cream here for her when she arrives.


1 year later… make it or break it still not settled. I hope one year from now I am closer to being made and not broken.