Wednesday, May 30, 2012

Resting Angels

This is definitely a stream of conscious entry…

Today I went to see my general physician for the last time in the forseeable future because after tomorrow I no longer have health insurance. That makes my heart panic some but somehow it’s a little easier with the last MRI having been decent and the next one wasn’t going to be scheduled for a while anyway. No return trip to Duke, no more neuropsychological rehab appointments, no more “any” scheduled appointments after them being so regular for a while. My doctors and I have always had some medical deals about marathons and events and pushing the body while they are monitoring  thoroughly… well, today we made one more despite the last MRI and all my vital signs being solid. No more pushing the body beyond the reasonable when my current commitments are done. This lasts while I’m not being monitored so maybe that brain power 5k will be the forced retirement… Of course, I could go against medical advice but being incapacitated or at risk while not monitoring puts, as the doctor so humanely pointed out because of being a parent, more than one person at risk and that’s a gamble I can’t take. And of course I’ll keep exercising but it may need to be more moderated. I went from there and did a marathon, making sure to come in well under 2 hours, on a bicycle.

18 months, married, divorced; healthy, cancerous; underinsured, better insured, uninsured; preparing early for retirement, wondering about bankruptcy; employed, unemployed. I talked to another cancer patient today who was wondering how my job hunt was going… which I’ve started and decided above all things I want to work with people part of it, it was something I always loved. Single fatherhood also has some loneliness, mostly around 8:30 after I get her to bed (if you’ve ever wondered why I spend so much time on facebook what do you do if you don’t want much TV and the house is quiet but interact in the way still left).  The friend works in human resources googled me, saying that employers often do that on the sly and too many of the pop ups are about me having cancer and helping out with this Livestrong cause, or that Hawtober event. She thinks that too many emp­­­­­loyers would find a more “employable” candidate because of it. Another friend, noticing my new  hair cut asked why I don’t I grow my hair out so if I get any interviews the scar isn’t visible… Neither of those things had occurred to me.  I am not sure I can honestly say I fault them for that though it stings a little.

I went to visit another friend at the hospital today with Kiana. He was having heart issues but as they tried to reset it, oddly enough what he was more afraid of death was that they’d warned him the procedure could cause­ a stroke and permanent brain damage…  I am very grateful he’s fine. He is a guy like me who does tons of stuff and he sat there sad that this may all mean that he has to give something up. He said he’s not sure he could do it; I told him that he should be careful because if he doesn’t do it, something may give on it’s own. I’ve been to the hospital for 3 different people in the last week, all unexpected. Everytime their significant other was there. My family thought it was odd that my ex didn’t show up to my medical appointments with my aunt Cecy, I don’t care what my husband would say, I’d be there. I reprimanded my brother for renting a hotel a couple of blocks from the hospital at Duke when I had found him a free place to stay 30 minutes away. Retrospect and perspective and how both I and other family members handled this… has both some enlightening and saddening moments. Another visitor at one of those visits talked about how his dad had a wiring that would trigger the ambulance to come. He kept a stack of twenties in his wallet and a couple of times when he should have been in the hospital he left it catching a cab AMA, against medical advice because if he was dying that night he wanted it to be next to his mother who due to her own medical issues was restricted to home. I cried at that story and the guy who never carries cash stuck a $20 in his pocket, not really sure why. As we sat and talked some more, it turned out his wife had died of brain cancer…

Tomorrow a friend has asked to sit down with me to figure out how to communicate with their family about the fact that she has stage 3 cancer. Someone whose relationship is falling apart wanted to pick apart my brain about what I did wrong.  I’ve always visited and talked to friends in the hospital but it wasn’t until I’d been on that bed that I understood why we have both the words sympathetic and empathetic. At some level, empathy  due to all this, is helpful but it also sucks.

Someone pointed out that I write too much about the person I was married to to be over it. I am not over it, no one gets over a 14 year relationship in 1 year unless there is truly something wrong with their brain.. I’m just trying to keep going but how loudly I shout that I am closed to the idea of being with someone new maybe my own life’s version of “methinks thou protests too much.”

A friend I was having a meal with grabbed my phone and said you can tell a lot about people by the songs they listen to the most. I actually wouldn’t have guessed any of these because most of them aren’t running songs… The top 10 in my Itunes playlist:
10. Lonely No More
9. That’s a Woman
8. Ballad of San Francisco
7. Cinderella
6. A Brand New Day
5. Life on the Moon
4. Feeling Good
3. Quiero
2. Our Love is Easy (this is where my mind does a David Letterman moment)
1. Waiting on Angel

They are all great songs and frankly I’d rather you google them then me but I was fascinated by Cinderella as I downloaded it less than 3 months ago which means I’ve listened to it on average about twice a day. And number 1 and 2 were downloaded less than six months and it’s been listened to also on average a little less than twice a day. I don’t listen to songs that religiously but sometimes to deal with emotions I’ll put songs on auto repeat to focus or to unwind or both simultaneously… One of the people from work sent me a message about how they miss hearing me sing the same song over and over. Most of the others have been on there since 2009.

But the lyrics to the Ben Harper’s Waiting on Angel, the one I’ve listened to the most  (and would not have guessed that was number 1) shows my “subconscious:”

Waiting on an angel
one to carry me home
hope you come to see me soon
cause I don't want to go alone
I don't wanna go alone

So speak kind to a stranger
cause you'll never know
it just might be an angel come
knockin' at your door
knockin' at your door

And I'm waiting on an angel
and I know it won't be long
to find myself in a resting place
in my angel's arms

My wife was there right before the biopsy, crying as she held my hand. At the surgery, she was awfully disconnected and the brothers staying down the street (while she was half an hour away) picked up on it, that she was not being warm to them or me and there were no tears that day.

Number 10 on that list I don’t want to be lonely no more which at some level is true… but I’m so exhausted, I am not sure if I believe in angels. But if there is one, today is one of those days I could use a resting place in her arms. 

Tuesday, May 29, 2012

How the Light Gets In

One of the comments that my ex wrote to one of the articles received about me was that they should be careful about their poster childer when only the nice parts of the child end up on the poster. This blog has always intended to be fairly raw and when you do things unprocessed, sometimes you make mistakes. Other people’s articles show the nice parts of the poster but here, you’ve literally seen pictures of me bleeding. I know that there’s entries here that people have warmed up to because well my heart was fairly warm. There are those which have made people angry or hurt.

The last few entries have been worrying people. The honest truth is being broke scares me as much as my sickness and I try to figure out how to not get there. I am so damn afraid of being poor and passing that onto my daughter, so damn afraid. And when we’re afraid and feeling trapped in corners, if we fail to recognize it, like a rat we swing at things that may be harmful but also at things that may be trying to help. We try to justify that somehow that job wasn’t a good match despite the fact that you’ve said you’ve loved it for years. Let me be clear beyond belief; I don’t believe that anything that went wrong in my life  wasn't at least partly at fault. Todd who would put together the tourney did it without asking me for any help because he knew that financial fears would have stopped me from doing the medically right thing to do and my pride would have found a way to shut down taking help. The last run I went before qualifying for Boston was with my friend Andy who connected me with Livestrong. 3 of us ran together and we talked about how they would do things. One of them said, I’d just ignore it and go party it up till it killed me. Andy said he would to, except he had a kid and that changes the game and the world…  It’s changed mine. 

I’ve hurt my mother’s feelings by some of the things I said about my childhood and the last few entries have hurt some of my coworkers. I was just wrong on some of those things but one of the sad/great things about human psychology is that when we’re happy we’re more likely to remember happy memories, when we’re sad, we’re more likely to remember sad memories etc. And lately, I’ve been scared and angry so I’ve been reflecting angry and scared memories. That’s not healthy to live there but it’s also unhealthy and dishonest to not acknowledge it (though it’s probably less than wise to do so in a public blog). Before cancer, I had some serious sports injuries because I’d take forever to getting around to seeing them and then aggravate the injury. This blog is a way to address some of the injuries and hoping that in letting it out briefly and intensely, rather than retaining it… I make some progress. One of the ways I get through the day and rough days is by saying and trying to live “Having bad days is against my religion and I rarely sin.” I’ve been sinning more than usual lately. 

But I made some mistakes and blatant remarks in this blog that its not okay to let sit unaddressed. On the small level, there are tons of great athletes at my job. Amy was the one who helped me push better for a marathon. There is another serious weight lifter and other cyclists. More importantly, the norm certainly there is tons of good people. Perhaps from the population we work with, we see they are (almost) all good parents. They are good people who do good, though I can’t honestly take back that most of them do it while finding a way to work without challenging the system and part of my problem always was that I pushed the system and local government rarely takes that well. I had always challenged the system and I think contributed some for which they tolerated it, but my heart suspects that once I’d brought in a 3rd party (the EEOC) for getting stuck in a bad job that was less than acceptable to me when I was already feeling overwhelmed by a diagnosis. Maybe the fact that we’re self insured and cost them hundreds of thousands of dollars wasn’t helpful either. 

On a bigger level of apology, I don’t think my mom did an inadequate job by any means and I know I’ve hurt her feelings by talking about some raw emotions and memories from childhood. I like to think that she gave me my good qualities and that I made poor choices which gave me my bad ones. She wasn’t perfect but I’ve met no parent who is but I’m working my ass to be a good parent because of her example not in spite of it. And I imagine that the good qualities from Kiana will be some from her mother, some from me, some from herself. I can take the blame for any bad choices.

On a similar level, my ex has made comments over and over that she left because there was another girl and it had nothing to do with cancer. This is true from several years ago, before my daughter was born. I’ve had to acknowledge this because a couple of organizations have gotten remarks about it. How angry she still is at me a year after we’ve been apart gets interpreted differently by different people. Some people say it’s the guilt of doing what she did. Some say it shows how much anger she maintained and never processed. Some say it’s the conflicting emotions of trying to figure out how to be in love with someone else when that means reduced time with her daughter. There’s obviously no way to know. When this story was sent to a couple of organizations, they asked about it. They appreciated that I didn’t dodge the issue or avoid it. It’s never made this blog because I started it from the day after the seizure and it was a mistake from long ago.  I wrote it to keep track of what happened since the seizure and the cancer but it’s obviously shifted a little with more references to the past. So let me acknowledge that, probably the worst mistake of my life from several years ago. If you think something that occurred years before justifies someone leaving their child and someone while they are unable to drive with lots of medical restrictions... I don't know what to say.

Thank you to whoever reads this and whoever cares but I am no saint, never have been, and never pretended like I was. I am someone who tries to move forward but sometimes gets stuck dealing with the past but I don’t want to live in it, again no matter how good or bad it is. I want to keep training for races and I am starting to train for that brain power 5k so I can do better in it. I don’t want to rest on my laurels; I want to improve for as long as possible. If I run a marathon again, I want to train hard again. I’d rather be alone than get into a bad relationship so if I dare to dream on that again, it has to be an updgrade. On the job, I probably will get to a point to where finances win because that’s one of my absolute biggest fears. With Kiana, I will use every resource I have to not lose a second of time with the greatest gift the universe has ever lent me.

­I write this, not as a story, hoping for some great ending but just as a way to capture slices in time, unprocessed, unfiltered, in case the memory ever betrays or fades or whatever that I can still remember the moment. I don’t know what’s coming but I’m trying to accept that I wasn’t quite prepared for life with cancer; I was prepared to die and those are gigantically different. I am not free from cancer and my dealing with it has “freed” me from other things. If I’ve ever said anything that hurt you or offended you, I am sorry at some level. That really wasn’t my intention. If peeking this closely inside a damaged brain is discouraging you, please stop reading it because I get through the day by people helping me and I don’t ever want to be someone weighing someone down. I talked to a guy from my running group about why I stay away from girls because I don’t want to weigh someone down with my cancer. He answered wisely, “dude it’s not a secret, people get to make their own choices." I don't know if I can get to the capacity to ask someone to make that choice. 

On that whole poster child thing, I think every single one of the pictures I’ve been in shows a scar visible on the side of my head. I have others that aren’t as perceivable but I accept them as part of my identity though I wish to never be wholly defined by them. Life maybe easier to make sense of if we make it about black and white, about victims and villians, heroes. That’s  just so rarely true. At the end of the day, we’re all broken.  Sometimes in dark places, those cracks are the only way the light gets through. Thank you for occasion tolerating my cracks and my dark places for those of you who have done it. Thank you for being some of that light.  I’ll try to get back to being more faithful to my religion. 

Monday, May 28, 2012

Best Laid Plans

There are only two types of people who people who are successful and/or make a difference in life. In extremely painted scenarios, there are those for whom the universe aligns, those whom were born into a life where their parents were able to provide many many things and they learned to run with it, they get a great start. There are those who the universe stacks up the odds; they are born into rough neighborhoods and have to challenge their environment to get anywhere and even then it seems like the hurdles just keep coming.

I grew up with a single mom in a neighborhood where people were killed. People keep asking me what I want to do in this transition and that’s a great question that I honestly had never given much time to. There is a psychological phenomenon that we believe things happen for a reason; something that in all frankness, it’s obvious I don’t believe. This comes from my psychological background which shows that if you present people with the exact same story and then give radically different endings with just a one sentence difference, most people will believe that what happened was what was supposed to happen despite the fact that you’ve given them opposite endings with the exact same beginnings. Someone recently recommended a book about someone who tried to write about the meaning of life while having lived through the holocaust. I appreciated the kindness but this isn’t some world event that I’m going through; I’m just a kid who got a rare cancer, lost his wife and lost his job and is raising a princess. I just don’t think my life is that important. I recognize my life as I knew it is shutting down or to quote Andrew Lloyd Weber’s Musical:

Close every door to me,
Hide all the world from me
Bar all the windows
And shut out the light
Do what you want with me,
Hate me and laugh at me
Darken my daytime
And torture my night
If my life were important I
Would ask will I live or die

Now Joseph’s song ends happy because he remembers that he was promised a land of his own. No one owes me any promises or a land of my own.

Everything bad that has happened to me has been by random chance or ignoring the data. I got everywhere good I’ve been by 2 things: help and self determination, in that order. I trained for my first marathon and crashed ridiculously hard thinking I could do it by myself. The next several I got help and coaching on and each one was better. I honestly never intended to work where I gave 6.5 years of my life to. I went there to ask who they contracted out to and they encouraged me to apply; if that doesn’t teach me that I shouldn’t marry quickly I’m not sure what will. I am a guy who follows through on his commitments. Currently, logistically, there are 3 outstanding, the brain power 5k (for which I volunteered at a booth on Saturday), the running community (for which I’m helping coach a marathon training group) and the Livestrong Century ride for which I rode just under 60 miles yesterday. I am not Catholic but if I don’t find a way to make things work between now and then, I’d say having helped raise some money for both research and the organization that helped me connect and teaching some for their first marathon… I’ve at least, if nothing else, paid my penance. The ultimate community I love dearly and I ran tournaments long before this and have ran several since then but I have finished everything I committed to and let them know, that for an indefinite amount of time if not ever, I’m done. I’d go back in a heartbeat if it was possible but that, in these days, is looking less likely. I am exhausted and wondering if soon and very soon, this entire adventure will be a ride was improbable, at some level impressive but also its soon to be over.

I dare to dream that I’ll get the job at the American Cancer society and intend to call them tomorrow but there are a couple of other jobs coordinating events, something I’ve volunteered for since I was oh 8 years old and never done professionally that I’m also pursuing. Juvenile probation is a great job and they do great work but the last week has made me realize I’ve never really been their type of staff. There are exactly zero other people in the building there who do any serious athleticism. The guy who loved seeing the world and misses doing so was always intrigued by one phenoment; my boss had us bring back postcards from where we’d been on trips. I had more on the wall than the rest of the unit combined. It was a job where my boss actually discouraged me from working evenings or weekends and just stick to 8-5. The one other person who had ever ran a marathon turned out to have some talent and got close to Boston qualifying and never tried again, saying it was just too much work. (I am not saying there’s anything wrong with people with my coworkers lifestyles but there are companies where people match up far more than I ever). The kids we work with, in my opinion, are roughly in the place they are from poor parenting, poor background but most of them struggle because those years of patterns aren’t going to change overnight. Teaching self determination aimed in the right direction is hard but the kids we succeed with are those we pull that off.

The first marathon I ever did was not actually a marathon, it was a marathon relay where the 5 of us together pulled off a Boston Qualifying time. I don’t know where I’ll end up or if I’ll need to settle on something that just pays the bill. But I want a job where self determination and teamwork are the norm, where we’re trying to improve things and do so together. I know that may be over dreaming but as it says on my daughter’s wall, “Shoot for the moon and you might land among the stars.”
In regards to my wife, I wish I’d done a better job of handling her emotions. I intended to die holding her hand and well, I am sorry she and I both mishandled somethings and that there’s a princess who pays the price for it more than anyone. In regard to my health, there’s nothing I could have done. In regards to my job, I am not sure I can say I regret not having been a lemming. I’ve sat and thought about it and while of course it’s been only 2 weeks, I can’t imagine taking it back just to be a lemming.

That of course is not to say I like being unemployed… But everything that was questionable when I was told I had cancer is not going to be part of the future… the job that stuck me in a back room with no communication, tried to prevent me from returning as soon as possible is now gone. We’re probably still having some aftershocks in the next few weeks but I’m not naïve enough to think it’d be healthy for us to go back to working with each other after all this.

I bought a house a month before Kiana was born and refinanced it to a 15 year loan long  before all this started so it would be paid off right around when she graduates high school so I could help her start college and/or adulthood okay. I took every anniversary off and traveled all over the world with someone who would leave anyway. I still never called in sick after having the seizure and would go to the doctor and back while having 108 medical appointments over the last 18 months. This may all still far apart in what feels not much longer than a heartbeat but I’ve started trying to network, updating my resume and willing to take help in connecting to a job.

I liked my life but am open to change now if by nothing else that it was forced on me. Yesterday, I biked up a hill that I would have ran up faster. While volunteering at the Brain Power5k booth, there was an acupuncture booth and the guy afraid of needles took a stab at it. Life Part II is full of novelties; man I hope good ones are coming. 

Friday, May 25, 2012

Treasured Garbage

There is the old phrase that one man’s garbage is another man’s treasure. There have been times through this process whether I’ve wondered whether I’m the garbage or the treasure stage of my life. That perhaps I used to be someone’s treasure and now I’m just someone being discarded. I try to fight feeling beaten and I win most of the days, most of the time but not all the time. There are times where I wonder what I heard in a song about yesterday’s men

They took the best years of our live and made us yesterday’s men.

And wondered if I’m one of those guys… where my best days are behind me. I sure hope not. I am going to propose something reconciliatory to the department where we have a nicer break up and if we get nowhere I’m fighting back if for no other reason than financial. I’m not broke as such right now. I got the biggest tax refund of my life back in January due to keeping the house, the kid and the medical bills and put away the $4000, I’ll get about 5 weeks’ worth of pay so I won’t be panicking for a little bit… but oddly enough much faster than I would have at any other time in my life. I tried to talk to Kiana about having to move and perhaps showing she’s as tired of the upheavals as I am she simply said, well we can go somewhere as long as it’s almost exactly the same as our house. So the way my “retirement system” plan works I’ve come to learn in the last 24 hours is that there’s been 7.5 percent taken out of my paycheck without a choice forever. I am not vested because I wasn’t there 8 years but the vesting doesn’t matter unless you retire from there, leave it there till age 60 or unless you die and at that point is when the county matches it. The interesting thing is that if you die after having served 4 years, they’ll match it the same as if you were vested and pay a lifetime benefit to your beneficiary and they pay it out to them for the rest of their life with cost of living adjustments every so often. So if I were to die tomorrow, Kiana would receive $400 a month for as long as she lived. If I die when she’s older, it would raise proportionally to her age, not mine. I don’t know when I’ll die but somehow it’s ‘comforting’ to know I’ll be able to pay child support from the grave if push comes to shove. And because it will benefit her whenever I die, I will do everything I can for it to be hers and never tap it. It’ also “nice” to know that while pricey my long term care and life insurance are portable at a much cheaper rate than Cobra.

I am not going to continue with monitoring this damn tumor until or unless I ever get health insurance again where it’s reasonable. I won’t turn into cancer in order to keep track of it; I will not drain healthy resources for unhealthy ones. However, I will of course do the safe thing and continue to take my anti seizure medication forever. Let me diverge for a second and say I heard a story of someone whose husband passed away more quickly than expected and his wife had over 10,000 worth of chemotherapy pills. She would not throw them away and could not get any doctors to pass them on to another patient. Through a support group she joined, let’s just say she discarded those pills and one woman’s garbage was another man’s treasure. Keppra, the anti seizure medication I’m on has different side effects on different people and so they take it very briefly when that happens and move to another one. The first one I was on made me have such flat affect that I had to do my personality from memory. Another patient on Keppra with side effects she didn’t want… I am taking out her garbage for her and it will let me treasure the next 3 months without a visit to the pharmacy.
The first of the Livestrong ad’s came out and is here visible. The juxtaposition of the quote and the picture are tough to see but that’s my treasure. And anybody who would discard a moment of time with that girl is garbage in my book and I don’t want to be garbage anymore than I want to be cancer.
I am still training, did my first track meet today since high school, since 1997. I used to break a 5 minute mile than and today I did 5:08 mile and a 2:25 800 and they hurt. Going hard hurts, pushing yourself hurts. There’s a few more and I’m going to do as many as I can and see if I can’t break 5 this summer again in preparation for the Brain Power 5k. People ask why I don’t stop exercising instead of other things…That is such an odd question to me. I went to Livestrong’s Cancer and Emotions class and it was actually one taught by the same person that did their cancer and relationships class. It was somehow comforting to say I looked like I’d made so much progress. It was a forum so there was a lot of talking and suggestions. People were suggesting this breathing technique, mediation, talking, music etc and I’ve used plenty of those but my suggestion was no matter which one of those you do, make sure you exercise. Whatever else cancer is, it’s also a physical thing. Emotions are attached to the body; whatever else we are, as mental as we are, we are also physical beings. I was amused when one of their staff came up and thanked me for coming and I smiled and said, “guys, I didn’t come here for you; I’m fairly sure you made a video about how I sucked at this.” They smiled back.

My friend at the hospital is doing way better. It was a dramatic difference and I wonder how much perception he has of it. People would always say that shortly after the surgery when I felt okay I looked and sounded horrible but in time it would make a dramatic difference. His wife was there today and I joked with him that he was looking so much better from day to day he’d be Brad Pitt in no time. I was incredibly touched and jealous when she said, “he’s already better looking that Brad Pitt.”

I’ve been discarded by a person and a place that I really really loved. Some of that was definitely of my own fault and I’m down in the dumps. I hope someone, some place will find something to treasure in me. 

Thursday, May 24, 2012

The Hills

An old college professor who had served in Vietnam used to say, “you pick the hills you’re willing to die on and everything else is flexible, and there should be very few hills you’re willing to die on.” Yesterday, I went biking with Chris Brewer from Livestrong (their senior communication manager and a much better biker than I) , trying to continue training for this 100 mile ride. He took me on a couple of hills, one which was absurdly tough. Still being a relative rookie on it, he destroyed me. I have been trying to learn the right gears to be in at the right times and after he destroyed me on the toughest hill, he said something casually about biking “one wrong shift on a tough hill and you’ll be way behind people and may never see them again or have to spend tons of time to ever catch up with them.” A few moments later going down hill with a steep turn, I almost wiped out. This seems to be my life right now, up hills, downhills and not sure I’ve done any of them right being such a rookie to a lot of these adventures.

The other thing that occurred on the ride was that I notice that everyone of his livestrong bracelets always seem spanking new so I asked him how often he replaces them. He told me that at events he often gives his personal one to other cancer survivors and it’s meaningful to them. I still have the original one now and its incredibly faded and it’ll mess with my heart if it ever comes off but it gave me a decent idea. Shortly after the biopsy, my friend Hugh gave me the model of a brain that had sat at my office ever since. I went to go visit the friend today who had the brain procedure and he also joked about how he’s not hanging out with me anymore since it gave him brain issues. I gave him the brain and congratulated him on that he looked great because as I’ve come to learn, as brain surgeries go, his was minor but there’s no such thing as minor brain surgery. How this will all come out for him is still up in the air but he’s hopeful but it was sad to have a nurse come in and say that there’s something curious going on and they’ll have to do another cat scan tomorrow. Interestingly enough, she demonstrated it to him using the model. I will be visiting tomorrow. 

I went running from there and then went and talked to human resources, sitting with them reminded me of the old joke that they are neither. I don’t want to spend a whole lot of time fighting this because like when Kiana's mom left, she left with more than half the income and less than half the debt because those are just not fights I’m wired for. If we could find a middle reasonable ground without going with a bunch of attorneys, I’d sign it tomorrow because they really do good work there even if they, like many government agencies, don’t do it efficiently or gracefully always. That may not be what happens as today they politely blew me off and said they’d get back to me when they got back to me. Oh I am a dreamer.

I’m still pretty shaken up as to where the future lies but that may just be my new normal, uncertainty just being my address. I came back as soon as I could to this job even when the doctors would have let me out longer for it to leave. I tried to change my flight to get home faster to someone who would also be gone. I came with plans to change up a house, plant a garden, plant trees and I’ve done all that and it may be more realistic to sell that house now. I’m tired and people used to seeing me at a different energy level asked if I’m having a hard time getting up in the morning since that might be clinical depression. I’m not; I am just trying to figure what hills I’m willing to die on.

After the hospital visit, I went for a run and then I went to see the ultimate crowd. I visited a friend’s house who is willing to rent me out two rooms if push comes to shove and I get rid of the house. Oddly enough, it’s actually a nicer house than I’ve ever lived in in a nicer neighborhood than I could ever afford and with a school that’s solid. I tried to talk to Kiana about the possibility of a home change and she said she wanted to live with me as long as we kept puppy. My dog’s name is actually puppy because my ex kept bringing her in to the place where we were staying in the Marshall Islands and I kept telling her to get the puppy out of the house. Then when it came to leave the Islands, “Puppy” had become such a part of my heart that she was actually the first Marshallese dog (custom rules had to be created) to leave the island.  Oh it’s fascinating the things we emotionally attach to.

Everything I tried to keep may be going away anyway… a friend who reads this and worries says that the one common theme in it has been Kiana and my connection to her and I don’t know what the polite way to say “Duh.” When I was in college (my degree were in religion and psychology), I did my senior thesis on the Akedah, the sacrifice of Abraham to Isaac which I think is a sucky sucky story. I’m sorry if I’m offending any Jewish or Christian friends but I don’t know how we spin that one correctly or accept it gracefully. If you read the rest of Genesis, Abraham and Isaac are never together again. And if I had to choose between God loving me and me killing Kiana, that’s not a God I’d want to serve. Anyway, whatever theological interpretations people make peace with that is their own belief system. But on a hospital bed, perhaps incorrectly assuming I was dying I spent too much of my effort only on her being financially cared for and not enough on emotionally. The last day before I flew out to Duke I took the day off to take her to the local Austin zoo. Right now, as the unemployment stuff sits, I’ve been taking her to daycare for much less of the day (I wish it was none of it but I can’t stay unemployed forever). I wish there was some damn clear view of what was best for her. When the divorce settled, there’s about a half dozen people (since for obvious reasons it was tough to trust her mom) who I said if there’s ever a time where you think Kiana’s better off with her mother, let me know because emotionally I will probably never get there by myself. None of them have said that yet nor do I currently believe it but whatever it takes to make her world better, I’ll be thorough and work on it.

I am going to Livestrong’s cancer and emotions class tonight and the only advice I have for that is do it better than me. In the journey for everyone there are ups and downs, hills which you may get wrong and other people will do better than you at or you may fall down or get close going down. My best race times are on hilly courses not flat ones but there’s a lot to digest still. Who the hell knows what’s coming? But what’s best for Kiana is a tough hill and I’m willing to die on that. And everything else is flexible.

Wednesday, May 23, 2012


I still love my brother’s remark shortly after this started; “I thought I always wanted a mind like yours, now I’m not so sure”. One of the things I’ve been very grateful through this entire thing when I put Kiana to sleep is that this has no genetic ties up or down. But when Kiana was a baby, there were babies everywhere. Now that she’s 5 there are 5 year olds everywhere. I cycled today and each time I notice more and more on the road. The human psychological phenomenon of notice those people who match us in spirit or tone or action is very interesting, so much so that I wonder if it’s contagious.

I had sat down with someone and talked about my brain surgery a few days ago and today they had brain surgery themselves very unexpectedly) as in I had lunch with them on Friday and they didn’t know it at the time that they would have surgery today. I apologized for being contagious and will visit them tomorrow in the hospital. The lunch was with me and the Brainpower 5K director about how to work on the race and she joked"well, I guess that's one way to get more participants." There was someone at my now previous job who I had such trust and affection for, who I believed had such passion for causes, someone who had been through brain surgery and their marriage had collapsed in a rare way and I felt such a human connection to. We had talked about our children and providing right examples and when I reached out for their help in the middle of all this, they wished me luck but stated they wanted to keep their distance. That was tough to hear and tough to experience and I’m wondering if one of the things that’s wrong with my brain is the lack of self-protection or self preservation. Someone let me know they saw the Livestrong ad in a health magazine of a picture of Kiana and I and that the direct mail piece has gone out (I haven’t seen either but I hope to). With none of those media things have I received any type of reimbursement nor would I expect to but lots of people have asked me why I didn’t ask. I’ve volunteered for so many things in my life none of which came with payment because otherwise it’s not called volunteering. I rarely lock my car, I’ve let homeless people live at my house (that I stopped when I had a kid), and never once in my entire life when I was in the car alone have I not picked up a hitchhiker (thus the name of this blog). But even as I sit here and mull it over, I just don’t want to give that part of me yet though I’m closer than I’ve ever been. I get that maybe my priorities need to shift but if you’re just about watching yourself and your own... I just... I'm not ready to live that way.

I’ve started applying for jobs today, mistakenly trusting someone I would have bet tons of money on could have been a reference and seriously second guessing how I trust people. But as people have asked for what is my dream job, I don’t have an answer, just like I don’t have a dream girl. There are lots of girls and lots of jobs I think I would be happy with. I don’t believe in destiny; I believe we can make things works and improve them by effort and dedication. But I don’t want a job where all I’m there for is to pay the bills. A friend connected me with a couple of people in a particular job that may or may not pan out. I applied for a job at a running center and actually at Costco cause I’ve always loved Costco. I looked at the jobs at Livestrong but the honest truth is that I think that with every job they currently have posted all of them I am underqualified for. But my friend Matt sent me a link to the American Cancer Society has a job where someone organizes half marathon and marathon teams to raise money for them and live healthy. I applied, daring to dream that my story with organizing events and raising marathons would be able to get me the position. It requires a degree in sports medicine and mine is psychology but again I’m daring to dream. 

I’ve walked in (and participated though I try to walk out) when people start gossiping or complaining but that’s also somehere that contagious spirit goes on. I’ve eaten things I shouldn’t when someone brought it out and it was just too easy. The human spirit, both good and bad, is contagious. Even sharing information no one is asking for is contagious. Go to a group tomorrow and announce what your favorite dessert is and everyone else will share theirs. We want to be able to have people relate to us and that, in my Life Part II, has been incredibly hard.

My tumor is not contagious even if some strange coincidences have. I mishandled some things about my emotions with my wife when I got diagnosed and she caught the bug and that got us here. If you’ve been reading this since the beginning, my job and I both mishandled some things about the diagnosis and I think some of that got us here. I am trying as best as I know how to not give up, to not lay down and if you’ve got that and it’s catching, please share because I both need and want employment. You’ve never seen a Mexican asking for money at a light, you see us outside of Lowes asking to be day laborers (sadly I have none of those skills). With that said, if you know anyone who is hiring for other skills, let me know. 

The good people in life do their best to pick others up. One of the people who has tried to help me be a “day laborer” me sent my resume to a couple of people within a short time of getting it and I was so grateful I sent her an email to start introducing me to girls and find the cure to cancer and then she’d fix all my problems. She laughed but during those damn moments that feel so dark… those sparks of hope help me laugh too. 

Yawning, gossiping, diseases, potlucks with healthy and unhealthy choices, laughing, sharing something about yourself is all contagious. Here’s hoping no one ever catches brain cancer from me and here’s hoping I catch all the good parts of other people’s minds from them.

Tuesday, May 22, 2012

Still Remains

It’s probably not a secret that I’m data driven, trying to put facts ahead of feelings. Once when scuba diving, we met up with a shark and just remained still. Once when backpacking we did the same with the wolf. Both went away. Being driven by data I still do have emotions and they can be very very heavy. But I try to make decisions based on where the data points. I play poker and while you can’t control the hand, you can decide how to bet on it.

My soon to be expired insurance actually has a cancer resource center that if I had taken it would have paid 100% of the costs plus travel costs if I had picked any of the top 3 cancer centers according to them, MD. Anderson, Mayo Clinic or John Hopkins. I considered it and weighed it with friends but Duke is considered the number one brain center in the world. Had I had liver cancer, kidney cancer or whatever I would have gone there but you don’t take second best for the brain in my book even if it costs more than the others would have. As previously referenced here, when deciding to do the surgery, I considered the impact of death which is less on younger children.

When going through divorce last year, I tried to figure out all types of data and made some decisions based on that. I didn’t want a divorce both for emotional reasons and because I thought Kiana would be best off with both parents; it states in my decree that I was against the divorce because it would be financially, emotionally and spiritually draining to Kiana but that I respected her right to walk away.  That’s the only way I could sign it but I also weighed in other factors once I’d resigned myself to it. The data shows that the long term impact of divorced kids is plenty but they are decreased by divorce being the main change. Kids who have to change schools, homes, friends etc end up carrying bigger emotional scars and longer term impact. Kids who have 50/50 custody also end up with more psychological problems than kids with a primary custodian which is why every state in the union has the set up that no matter the legal jargon is for custody there is a home parent in contested divorces. Kids are not meant to be shuttled back and forth, they need to have a home. While it took some sacrifices and continued to keep me broke, I kept the house and kept Kiana in the same daycare that she’d been at before all this started, trying to make the transitions the least as possible. In possibly the hardest thing I’ve ever done, because my wife had been an incredible mother (stayed home for a year, nursed for 2 years, and worked at Kiana’s daycare till she was almost 4) I offered her to be primary custodian as long as she kept her in the same places. She passed up that offer saying she couldn’t afford it. Changing homes, changing schools, all of that stuff happens but if Kiana had associated it all with divorce she’d be even more harmed says both the data and my heart. As I’ve come quickly come to learn even as an adult, too many back to back changes, is traumatic and exhausting. So I tried to minimize them for my daughter.

I met with an attorney today who thinks that if we jumped through some of the legal hurdles through this and that there’d be a case that juries could be sympathetic to. But just like I didn’t want divorce, I don’t want to fight a place that honestly does good work through the legal system. I haven’t made up my mind and have requested a meeting with them to see if we can do it internally but that may continue to show my naïve idealism. I am a certified mediator and I just have this belief that people across the table can do a win win and people in a court room is often a lose lose.

So where’s the data on all this? I’ve given myself a deadline of July, in two months to decide whether or not to sell the house and/or discuss custody for financial reasons. This is the 3rd time in 18 months I’ve had to consider this. The first was in case of mounting medical bills, the second was because half of the household income was leaving, and this time it was because the other half left. The house is one of those places where my emotions win out because I’m not a guy who attaches to places but I wanted Kiana to always  have a room of her own, something that never occurred in my childhood, literally buying the place a month before she was born. If I have to get rid of the house and Kiana has to change anywhere, I have to honestly look in the mirror and figure out where her best home would now be, with an unemployed sick father or two other people, neither of which I’m much of a fan of anymore, but who may be better financially set.

If I don’t have decent or any health insurance and Kiana is not here, I’m done with medical appointments. The simple truth is that if this thing comes back, I probably don’t have much time anyway so if it’s a waste of resources, what is the point of monitoring it?

Do I make decisions without emotion? Of course not. I wouldn’t have put off surgery to run a marathon if it was all about data. I wouldn’t have tried to keep the love of my youth from leaving despite all the mess. But emotions make horrible masters but decent servants. In fact, I’ve been crying quite a lot in the last week, wondering what I’m fighting for and as I mention giving up, it’s worried a couple of people, with 2 asking if I mean suicide by giving up. I’ve never spent 1 second of my life being suicidal and if I ever did people would probably find out because I was dead. It’s making decisions like the ones that I’m talking about.

I don’t know what’s coming in the next few weeks but I’ve set some benchmarks and reactionary goals based on the reality that I don’t have much left in the tank. Someone said to me you took cancer so well but seem so paralyzed by divorce and now the job loss. I’m not sure any of them would have done it but I am a marathoner not an ultra marathoner. I listened and cried to Simon and Garfunkel’s the Boxer and wonder if that’s what the end of July will be:

In the clearing stands a boxer 
And a fighter by his trade 
And he carries the reminders 
Of ev'ry glove that layed him down 
Or cut him till he cried out 
In his anger and his shame 
"I am leaving, I am leaving" 
But the fighter still remains 

I am not sure what’s coming (again). But if I leave, I guess that’s the day I need to take off the bracelet because I don’t want to misrepresent. I finished my relationship with the Stephen ministries pastor I meet with every week because he’s an employment attorney for a career (a lay minister) and it would have been unethical for him to talk to me about this. I also don’t know how to sit across from a guy who is brilliant in what you are going through in life and pretend like there’s no elephant in the room. As I did that, I was crying but couldn’t help think of what happened to both Stephen and Paul.

I am not done yet. I picked up two full bags of recycling today in the trash run, the most I’ve ever picked up by finding a homeless area and spending a bit of time cleaning from which I came out with burrs and cuts but some things that will help the homeless area be a little cleaner and the resources they used be renewed. I am worn out, very worn out. But when the time comes, for all of this to end, I hope part of that spirit never died when my remains are still. 

Avoiding Cancer

There are a list of behaviors that will help you avoid cancer:  diet, exercise, things like not smoking or living in cities that are too polluted, picking the right parents.  And then even if you do them right, even then, serious athletes can get it, innocent children can get it, Superman’s wife can get it and whether or not you survive it may be a very dis-balanced coin toss. I haven’t gotten on the job market much at all. I did a resume and sent it to a couple of places and I need to ground in and go but I don’t know what I want to do. But unlike a relationship, I don’t have the luxury of sitting around for a year hoping someday that I’ll meet the right one.

I haven’t applied for unemployment and don’t know if I will. I have updated my resume but don’t really know what jobs to apply for but I am meeting with an attorney today and I turned in my appeal yesterday. I haven’t figured out what to do in regards to Cobra though I’ve looked at Costco’s personal health insurance which is in short great if it’s just for insurance and not as great if it’s likely to be necessary. Perhaps to no surprise, some of the things my doctors want to move up before insurance is gone with our insurance being self-funded aren’t being approved. We’ll call that a coincidence because its not like things have been approved well throughout.

All living things want to keep living. That includes the white blood cells which fight disease and cancer which is a disease. They want to continue to exists but the different between the good and the bad in very simple terms is that the cancer cells want to reproduce no matter what damage it does. Now, I am not getting preachy here about vegetarianism or recycling etc but if we consume whatever we consume without regards to the damage to ourselves or future generations, we aren’t much better than cancer.

Tonight I’m going to the Austin Marathon’s trash run ( It’s a new tradition they started last year and this will be their 6th one and I’ve haven’t missed any of them. I am usually not a litterer but during races I take that cup of water, drink it and then throw it on the ground. These trash runs each goes through part of the course and picks up garbage along the route, it’s own way of giving back.

Ironically, as a small child I actually wanted to be a janitor because I liked cleaning. A little older now I realize that’s not the easiest job nor is it well paid but I have to make some decisions about whether or not just going to work for a paycheck to “keep my lifestyle” is worth it to me. Kiana talked to me about the new shelves she’s going to have at Dre’s house and that (for the first time since her mother left), she’s going to have her own room where mommy lives. She shared it with the enthusiasm that children have about all novelties. My wife left when I was broke and sick to be with a guy who was healthy and has always made a lot more money than I am, infinitely more so when you have no income. Now I see my daughter excited about the things she’ll have there and anyone who doesn’t have mixed emotions about that please send me the instruction book.

I come from a country where grown men leave their children and wives to go live 14 or 15 men to a house to be able to send money back to their wives and kids to put food on the table. My own grandfather did it with his 12 kids. My stepfather did it for me and we had no genetic ties though he adopted me, his last name is mine, and the figure itself is tattooed onto my shoulder. And once again, wondering in the wilderness, I wonder about where Kiana is better off and where she’ll have access to more resources. And I wonder about whether or not it’s an adequate use or resources to be keeping track or fighting a disease that has always seemed improbable to beat.

I don’t know what’s coming. You could probably have stuck that sentence in the middle of any of these entries. But since I didn’t avoid cancer itself, I want to avoid being cancer, I want to avoid using healthy resources that damage healthy cells just to keep going , just to stay alive. I hope all this process is brain surgery, radiation, chemotherapy, things that do some damage along the way in order to restore perhaps even create health but it sure doesn’t seem like it. I don’t know how much left I have in the tank but I’ve always said “one day at a time, I get tired when I do two.” So today, I am trying to figure out whether or not to fight and to pick up some garbage along the way. 

Sunday, May 20, 2012

A Change is Gonna Come

The guy who puts off brain cancer surgery to run a marathon is not going to be the world’s best listener. Simply put when this all came, I fought change. I sat and re-evaluated my life and realized I liked it. Even when asked what I would change, the only thing would be to get that bad ass tattoo. But still now it has been chipped away, the job, the finances, the wife, the brain. It’s interesting to me that many people in crisis choose to change the path of their life, in crisis, I tried to keep it but it changed for me anyway.

I sit here and review the emotions and the ideas that came when this diagnosis first arrived. First, it was a lot of vagueness of course. The biopsy was supposed to have a variety of possibilities, it was either benign or cancerous, if it was cancerous it was probably grade 1 or grade 2, if it was diffuse astrocytoma or oligodendroglioma. Out of all the possibilities, I came back with the worse of each scenario. My job would move me to a different place, from having my own office to a place that I sat in cubicles, from carrying a load of work to a department that can only be reactive to arrests. So on a slow day, everyone enjoyed the lighter load but I just had time to sit and think about all that had happened and that I was probably going to die of cancer when a few weeks before, I had never even called in sick. The move occurred without any conversation to me after I’d been sat in an office being told to have no contact with kids (this was later explained as there having been an error in paperwork). The move was justified by my driving restriction despite this not being the policy at the time (but due to me appealing it, the policy has changed). I would file a claim with the EEOC with the conclusion that it wasn’t clear but that I could sue if I felt it necessary and to watch out for retaliation. I never sued because this dragged out even longer than the diagnosis to surgery time, government wanting to be always thorough and, who will ever know why, but within a few days of when I was cleared, I was put back while the investigation was still going. I had fought for my job back but the truth is we’ve never gotten back to the same place. My boss, in what I believe was a genuine human gesture said the exact same thing that Sean, the guy from my running group would say a few times while providing a ride to marathon training, you should be just focused on keeping food on the table however you can get it there.

My wife at the time was sending emails that I would not notice until after she left. They were long emotional ones, with songs attached and I responded with only a few lines. In my emotional moments, I turned to other people, in my mind trying to lighten her load. People would notice she was losing weight and seemed stressed; I was reading about the world’s best neurosurgeon hoping a surgery would change me minimally.  I was trying to treat cancer like data, like I had done too many things. She wanted to sign up my daughter for the Wonders and Worries counseling program which genuinely helped her when I had them help this year. I fought the change.

I wanted my job to understand that cancer comes with emotions and to not let their logistics get in the middle of that. I wanted my wife to understand that cancer comes with logistics and not to let her emotions get in the middle of that. Well, that’s obviously not turned out real well and frankly, while there’s no conclusive way to ever know this, I think both were turned off and turned away with that. She would find someone who was listening to her emotions. My job and I have never had the same relationship since then, if demonstrated by nothing else other than that my supervisor and her boss, unlike previous Christmases received nothing like bottles of wine etc as a thank you nor vice versa. It had become a professional relationship only and perhaps the double sided suspicion helped none of it be fixed. I asked both personally and professional months ago for a way to improve it but it was disregarded despite the request actually going into my personnel file. Relationships are built on trust, no matter how much love there is. In neither of those relationships did we rebuild trust or love though I still love the fact that I got to share part of my life with each of them, years of it. When it came time to go Duke, I had actually originally asked for vacation because we had communicated things so poorly but eventually would tell them beforehand and go on FMLA. I loved the job enough (and also wanted to save medical leave in case it was ever necessary) that I did not leave the Duke hospital until we were agreed with paperwork.

When I was found collapsed on the side of the road, I told them the same thing that I put on facebook that I may have had a seizure and that we were doing some medical appointments. No one saw what had happened and like too much of my life, the results were inconclusive. I told them the same time I told Kiana’s mom and the two things that were not healthy during the cancer process were tough to communicate with them or to trust them appropriately. When Kiana’s mom left, I wanted to fix things, to not throw away a history and I’m trying to do the same with my job, appealing it to get it back but it may show my naivete to think that such things can be restored. The reason my termination letter states is a mistake I honestly made, an incident which was, of all things, a memory lapse. I’d share more but I worked in the juvenile court system and there are of course legalities.

I fought change so hard when this came because (you can insert you diagnosis here) I liked my life. Someone would approach me who wanted to fix something from years back and while I gave it consideration, I didn’t do anything about it. My job got moved and I wanted to just get my job back. Eventually my wife would leave and I tried to get her to stay. I hoped the smart kid would come out all with my executive functions. But it all changed; it all still changed.

I’ve referenced in here getting old but in many ways I’m just growing up and having to accept change. I’ve never really been in the job market as an adult; I’ve never really been in the dating scenario as an adult. I am volunteering as a running coach for some people training for their first marathon. I have cycling workouts and learning that it takes more of my brain than running did. Kiana is asking questions that I have no clue about and I’m having to do research. I’ve received notice her mother is moving in with her boyfriend and wonder what questions will come from that. For each of these things, I’m having to take guidance and learn to listen better. I’m a long way from home and on some of those I have no idea where home is.

I liked my life but it’s in many ways so far gone from what it was 18 months ago. I volunteered to run a tournament that I started several years ago and it was it’s most competitive ever. I got to watch the director of the Brainpower 5k sharing her brilliant ideas and receiving them from the Livestrong Marathon director over lunch. I am going to finish my commitments, the Brain Power 5k and the Livestrong challenge. But I’m honestly thinking it may be time to quit and change and lay down. That decision hasn’t been made but maybe it’s time.

George Bernard Shaw wrote that The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends on the unreasonable man. By me being unreasonable, policies have been changed at my job and some modes of operation have too that I believe have improved the place. Tournaments have started and grown. Money has been raised for charities and people have been “inspired” to run 5k’s and half marathons and marathons. But it’s also cost me some things and someone that I loved and now, perhaps even more than my medical bills, it cost me my livelihood and health insurance.

To me giving up means becoming the reasonable man, adapting myself to just fit in. For a kid who not fitting is the norm this is as frightening of a change as cancer. The kid who started a science club in junior, the kid who was the first in his family to get a college degree and went to California where he know no one to do it, the kid who volunteered in the South Pacific for a couple of years after college, the kid who moved to Austin where he knew no one,  the kid who before this all started had been to several countries and places with his wife and child with spare money and then saw all the spare money disappear and half the income move out of the house and has not really been anywhere on his own dime since. There are of course middle grounds between being reasonable and unreasonable but I am not good at those.

I want a hardcore relationship if I’m in it. I want my best time when I run a race or in Boston if I can’t get it, turn it off and have a great time otherwise. I want a job I believe in but also pushing to make myself and the system better in. Maybe these things don’t exist for me any longer. I sat and cried with someone on a park bench on Friday and wondered out loud if maybe it’s just time to give up.

I tried so hard not to have my life ripped from me even as parts of my brain were. I am appealing the job but like the surgery, I’m assuming the worst. A lawsuit is being considered but a legal remedy to a place that I loved is tough to consider. So I looked in the mirror today wearing an old set of shorts and jersey and wondering if the guy there is going to become reasonable and the guy who I fought so hard to keep alive is going to just be someone that I used to know.

I pray and hope I’m wrong that change will be improvement. But this tale is not about victims and villains or heroes. It’s about that things are nuanced and subtle. Perhaps, I’ll be better with less cancer, find someone I can love just as much if not more, a job I’m as passionate about. Today those thoughts seem improbable. Dark thoughts certainly make me think that maybe the universe was giving me a hint that my spouse and my occupation fit in better with someone replacing me.
This is a dark place. I haven’t given up yet and dare to dream I won’t ever do so. To quote a Mariah Carey song:

If there's one spark of hope
Left in my grasp
I'll hold it with both hands
It's worth the risk of burning
To have a second chance

People came up and hugged me today for running the tournament. People have offered to help with the resume and given some career tips. People have told me stories of when they were forced to change jobs and are glad someone made the decision for them. Like cancer, this seems like a low probability of success to me. So while battling fear of change, which is and perhaps always was coming anyway, I hold on to those sparks of hope and we’ll see if this risk of burning gives me a second chance.