World of Demons

One week after the Austin marathon, the muscles are still torn up but it’s now just a sort of residual soreness. But they weren’t too sore to keep up with Kiana on the last lap of marathon kids. Marathon kids is smarter than the kind I do. Rather than do it all in one day they do it over a few months (Kiana did it in 6 weeks!).  It was an amusing morning as she kept trying to hold hands with a little boy and encouraging him to have them run it together. I gave his father a stern talking to about keeping him away from her ;). My mother came to town to watch a quarter lap of her granddaughter and Kiana ran it hard and because friends and family were allowed to do it rather than slow down she took the outside lane so she could sprint it in. As is customary, I let her pick her outfit and of course she did it in a pink dress. Man, I love that kid. I ran home from the stadium not quite yet able to keep even an 8 minute pace for what was 7.9 miles. Keeping my cheesiness and obsession with the number 8 up I did a little extra to get it to 8.08. Didn't have the legs for 8.88

People think I vomit because of the intensity and maybe that’s true but it’s above all things the medication. But I do it fairly stoically according to someone who saw me do it. I’ve done it in the middle of track workouts and then just done the next repeat. Let’s just say that less than a handful of friends in the running group have ever noticed it. I just get back and keep going. People hear about it and their impressed but what else are you supposed to do? As I ran last Thursday night with the ship of fools, the guy running with me says I never pass by that house without thinking about your collapse last year. I don’t either because well that’s when we upped the medication to double what it had been and then triple on the days before, of and after athletic events. I am not a fan of drugs but if this is the compromise so I can keep running, that’s a demon I’m willing to deal with. Still, yesterday, I went to a survivor brunch, the second one ever in Austin and I’ve attended them both. I do some online forums to but there’s something about being face to face, the human connection. All the survivors there coincidentally at this one had experienced seizures. I’ve been on 3 different anti-seizure meds but we talked about the side effects. The one we all had in common was the gastro intestinal issues. The first one I was on took away hunger where even after I ran 20 miles I had to remember to eat and it gave me a flatter affect. One messed with my gut in ways that are probably best not described on a public blog. And the one I’m on now well it makes me vomit some of the time. Not much to complain about and I’ve just put up with it but one of the survivors there is seeing a GI specialist about it all. As this network starts to build in Austin of brain cancer survivors in specific, one of them said something very interesting was that it freaked her out to find out that so many people in Austin had brain tumors. She said something that I still have no good response to that it was unfortunate that this was the way we connected. My take is that there are way too many humans without a solid human connection without an illness and I’d rather have an illness that helps me connect than not have one and not have the connection. That lack of connections is a more serious illness.

I did an interview for Livestrong last week. It will be one of several parts that airs tonight on a Dallas network. I got a rather nice thank you (literally a thank you nothing else for those who like outside magazine still think Lance and Livestrong are a single issue http://www.outsideonline.com/outdoor-adventure/athletes/lance-armstrong/Behind-Outsides-Fight-with-Livestrong.html). I am always amused at those thorough thank yous because its like when Kiana says I love you. It’s heartwarming and tear jerking but it’s simply being grateful to those who helped give you some good direction in life.  I’d rather not have that leprosy of brain cancer but since I am, I’d like to be the one who goes back and says thank you.

But the trophy was 3 hours and the breakfast one. The demons I still deal with are there. There are emails between my attorney and I, my doctors and I, and while this is the 3^rd of 4 months with only 1 medical appointment, there’s 2 next month and then a return to Duke in April. The break has been nice but you know the appointments will never end.  And even though I’ve only had one appointment in the last 3 months, and it was exciting to go through a month or two without medical appointments, I’ll also celebrate if there’s ever a month without a bill. The latest time cover is the longest single article they’ve ever had written by a single author, why medical bills are killing us: http://healthland.time.com/2013/02/20/bitter-pill-why-medical-bills-are-killing-us/. In it describes the breakdown of medical bills and how this insurance negotiates for that and this mark up and that mark up. If you’ve read this blog far back enough, you know that when this all started in the ER and all the bills started coming, I wanted to start a restaurant where only doctors could go where they’d get a separate tab from the waiter, the cook, the manager, the bartender, the cashier, the parking attendant, the janitor etc. I still have that first bill from the hospital and to quote that blog entry I wrote:

“In my continued efforts to always be an optimist, my friends and I looked through the bills if for nothing else for amusement. There was that "Rad Arrow Art Set" $128, the "Adult Sensor" for $168, the "Airway Oral" for $13 (a real bargain for oral one of my friends commented), the Urine Meter with the 16 foot fold for $126 and the finger probe for $180. These were just a few of the vague but amusing descriptions that made me realize I'd had a much better time at the hospital than I remembered. But they didn't even let me bring home any of my rad art pieces.”

I once thought the doctors needed to be more clued in but realize that they are. The administration of all that and prescription companies and insurance companies are all in their own trying to make a buck (or a few of them) and maybe I’m wrong but in the basic human world, I don’t think most of them are doing it in anyway deceptively. I am not blaming anyone because my team of doctors is amazing. They are good enough men and get my focus enough to realize that I’m not doing this out of a survival instinct. I am not even sure I have that, I am doing this to make and catch some memories with Kiana because other than that there are some days I am very exhausted by all this. And I no longer have health insurance of any sort but even so my doctors are seeing me at the rates they would have negotiated with the insurance (not cheap). To give you a basic idea, meeting with doctors has ranged from 68 to 400 for consultations. The MRI next Monday will be a little over $400. But with that said, I received my first ever medical over payment reimbursement for appropriately enough $8. But I do have a long term insurance that pays the bill and they’re being kind enough to also write a letter about the financial details for the court case. And with that said, there are times I realize that there are still rays on the horizon of hope with the biggest initiative ever in human history to understand the mind (http://www.the-scientist.com/?articles.view/articleNo/34422/title/Obama-to-Back-Brain-Mapping/). The tentacles of this tumor are still invisible to modern imagery, the machine I’ll sit in next Monday to see it can’t capture it all but maybe this brain mapping will help with see and fight if and how long this demon in my head’s arms are.

I do all these things just so I can say that I am following medical advice and being cautious because well, this week Kiana is the star of her classroom (a once a year honor) and we made her a pretty rad art set. The risk/reward to me isn’t life and death. I’m still going to die and frankly, assuming the odds, I think it will be from this but I hope and dream it’s not anytime soon. Someone was kind enough to say that a weaker man would have cowered a long time ago. I don’t know, I don’t know. When I see the legal stuff and wonder if a judge will rule that a child is better without me long before this takes me, it will be hard to not cower. My head has been bloodied but it’s still unbowed. And when I sit here and whine about this kind of stuff, I read things like Matt’s account of his first marathon (http://hawktober.com/2013/02/20/life-changing/) where he relearned to walk, talk and eat and just ran a fucking marathon.

So drugs, bills, vomiting, swallowing pride (harder than swallowing vomit), medical procedures, limitations, custody battles based on medical issues these are all demons in their own way.  It’s hanging out with the coolest kid the world has ever known. And I still walked her to school this morning and I still volunteered at her school today and will both do homework and have fun with her this evening. And those moments remind me that one may tolerate a world of demons for the sake of an angel.

After Math

Some of the brain may be miswired but it tells you something that my response to my coaches congratulatory email on the marathon was asking about how to make next year better. This would lead into them copying so and so from the running group and hearing the different approaches. It was all good advice and I’ll incorporate it into next year’s training but it was also worth listening to one person’s advice that you shouldn’t tweak too much based on one race. The 3 races in the last 6 months that haven’t been PR’s a 5k, a half marathon, and this marathon were all ones in which I puked after and I sit here and try to diagnose if that’s just medication or anxiety but I also sign up for one after… If anyone thinks its diet, let’s just say that my “I earned it because I ran a marathon” meal shows that it’s not.

But then it was back to time with real life, some emails with attorneys about the custody case. We made one simple change. My next MRI was scheduled for March 18^th since the doctor had authorized it for March but we moved it to their first opening on March 4^th to if nothing else show that things aren’t growing, that my brain is stable. Kiana has perfect attendance has just been screened for GT. I keep praying, hoping dreaming that cancer and its side effects picked the wrong guy to have a fight with but I think 2 minutes looking at my race results and 10 minutes talking to my daughter will tell you that the areas I’ve focused on the most are doing the best.  With that said, remembering I woke up in an ambulance a few days after the last marathon, I am taking the recovery easier than I have before. I biked 10 miles easy and made sure someone was with me and the two runs after were also accompanied. The first one is a weekly 5k where I’ve come in first with a stroller and this week I was literally dead last. About halfway through it, Kiana looks up and says, aren’t we usually done by now.

I took the two ipods in and one was old enough to where it was just simply battery life and the other was just water damaged… that’ll be the first purchase I make cause I learned quickly during the marathon and during cycling training that I have no clue how people manage to run without music.

But I want to contribute still and learning from one of my actually retired running friends that he volunteers for a math class less than half a mile from my house, I applied to the program about a month ago. I had to have a background check and got approved and went to their orientation yesterday. It occurs to me that despite some memory and language skills being changed, on both Lumosity and in my neuropsychological evaluation, my math skills have never gotten better or worse. I took calculus once upon a time but doubt I could hang there but figured I could help out some 7^th graders with math. At the orientation they approved me for the hour and a half week program. There are days I lack confidence in me but it was good to get some of it back

I don’t want to be just about cancer but I do want to continue contributing to the cancer community, both brain and in general. The young adult dinner was a success and people I’ve met there and other places have blood cancer.  In honor of them, I made a contribution to Kiana’s first charity fund raiser and they came in first by $2, raising $325 out of the school’s $1700. Not being a flower guy, I passed one of the sets of flowers from Livestrong weekend. Unlike last year where I noticed no one at the marathon expo had anything in regards to brain cancer, this year I met someone there who had something on their display and someone who gave me a band regarding it. With that said, if you want to make a donation towards my Duke 5k account… http://dccc.convio.net/site/TR/Angels/AngelsAmongUs?px=1118121&pg=personal&fr_id=1150

Anyway, I think life still add up to me being a decent runner and being a decent dad. Kiana is the start of the week this week and she got to pick pictures of which ones she wanted to put in for a poster that will go up at school. I was both very uncomfortable (cause I’m not wearing a shirt) and very happy that she picked one from the rogue 30k of us doing the race I’m most proud of. There is an all girls party where apparently I’m going to be the only guy among a bunch of little girl and women and they said, don’t worry we want you to come… you’re girly enough.  With all that once again, the two questions I ask at every medical appointment, am I fit to raise a kid (why I get through the day) and can I keep running (how I get through the day) are answered yes. Today is one of those days where they combine and I get to watch the best marathon finish I’ll ever see. I’ve watched the Olympic one and some tv ones and the local ones but today, today Kiana finishes the last .2 miles of marathon kids. My mom came into town just to watch that. So I like the equation my life is in. 

No Guts, No Glory

4^th Austin Marathon, 6^th marathon over all. There are days where I wonder why I run marathon though its usually just the day or two after. I keep talking about how I’m going to retire from these once I break 3… and the marathon won’t let me retire because it hasn’t let me break 3. It was weird to go to the expo and see a gigantic Livestrong poster of myself and everyone kept trying to get me to take a picture with it which I thought was weird but I finally did take one picking my own nose cause well, I think it’s clear that humor is one of the ways I deal with the day.

The weather was one of the better weather days and I started running with discipline, within mile 1 buckling down that I was going to just hold pace and if I had anything left at the end kick it in. Before the race I had asked the 3 hour pacers that if they ever saw me slowing down to heckle me as they pass me. I didn’t need niceness I needed motivational pushing. The playlist was fine and I knew this race was important. I wanted to break 3 for me but I also wanted to not let down the fact that I’d called 3 to friends and training groups. At mile 4, my ipod died. I’d actually taken” an insurance” on things that had previously gone wrong and had a second ipod on me. It somehow apparently was too sweaty to come on. A few miles later and everytime I had a friend I tried to get them to give me a phone to put on Pandora but none of them had it on them or I passed by them too fast. Late in the game I even ran backwards for a little while cause I thought I saw friend listening to an ipod but it wasn’t who I thought it was. So the guy who trains with music… had none but I kept going, holding pace within the sound of silence. I was going to conquer this race.  There were friends with great signs. He’s a great runner, a cancer survivor, and a great dad. There was a Leonstrong sign. The first water stop was the livestrong one, there was a yellow mile. There were bracelets all over the course. There was a less than appropriate one that said If marathon was easy it’d be called (censored)’s mom. Each one made me both smile and grateful that yeah I’d put off brain surgery to run one of these. I had done that because I thought that would be the last one and guess what there’s been 3 more since. I have to take extra anti-seizure medication on the days before, of and after sporting event I do this and sometimes that messes with my stomach and sometimes it doesn’t but hey my doctors let me do marathons so I’m not going to complain or make any excuses.

About mile 17, my stomach was feeling less than fine and I stopped to vomit. The 3 hour guys would pass me and I, in desperation mode, sprinted to get them back within eyesight. Shortly after the next waterstop, I’d vomit again and did the same thing. This would occur 4 times and they were within eye sight till mile 21. I was weaving on the side of the course just to not vomit on anyone or on the course itself when I got my favorite heckle ever from someone I didn’t recognize, what no stroller this time? Apparently I need a stroller to do well.

A friend would join me at mile 22 and I asked him if he had his phone, he did not and I tried to get him to go home to get it which he tried but I’d never see him again. At mile 24, I had a friend who handed me his phone with music but I was too far behind to break 3 at that point and I stopped for about a minute trying to figure it out. For the last couple of miles, I don’t know if I’d just lost too much nutrition or too much hydration but I kept trying to moderate the goal. Okay 3 isn’t going to happen, let’s go for 3:05, still boston qualifying… The 3:05 pacers would pass me at mile 24.5 and tell me come on J. I sped up and kept up with them for a quarter mile maybe but I just couldn’t seem to generate the speed. Then I moderated the goal to well okay a pr which would be 3:07 and under. Then realizing that wasn’t going to hold and having 1.2 miles to go I said look I’m at least going to get under 3:10. Everyone who saw me those last few miles thought I looked fine but I guess I understood the phrase No guts, no glory in a way I never had before because with nothing in my guts, I could not generate the power for the glory. I made a rookie mistake of trying to recatch the 3:00 guys instead of focusing on my watch but other than that, I don’t know what I could have done to make it better. And for whatever it’s worth, I have previously on races where I wasn’t going to get the time I’d set out to do or call where I turned it off and walked too much I walked through the last few water stops trying to get the Gatorade or water to stay. So if there’s anything I’ve learned in the last couple of years, it’s that when things don’t go your way or the way or your hopes or even with what you’ve put effort into, you don’t give up. It’s not all or nothing. Marathons, like life is hard. It may not go to the soundtrack you designed or sit well with your stomach all the time but you keep going as best as you can, as best as you know how till the finish line comes.

Still, after I crossed the finish line there was someone there who told me I had repeated as the men’s marathon cancer survivor. And, I was proud to defend the title, and proud to have taken 7 minutes off last year’s time. It was my second best time out of 6 marathons. And last year I took the title with only a minute or so. If you look at the results in the cancer survivor division, http://www.wetimeraces.com/RacingSystems/Results/2013/AustinMarathon2013/AustinMarathonResults.htm#/results::1361195508774, the women’s half was decided by 14 seconds,  the men’s half by about 2 minutes, the women’s full by 8 seconds, but I led the men’s marathon division by 22 minutes.  Last year when I crashed so hard, I said something incredibly childish, upset with myself for not hitting my goals, and when a close friend called to talk to me about the marathon and congratulate me about taking home the cancer hardware, I said yeah I came in first out of us losers that have cancer. He called me out immediately and said someone who gets cancer and survives it is never a loser. I felt guilty immediately and before this race started I had told the director who could tell I was upset as I crossed the finish line that no matter how this year went, I’d be smiling and I was. Well, I was until I went over to talk to some of the people in the bleachers at the VIP section, and then I threw up four times.  You gotta love that I ran to the side of the course to protect the runners from my projectile but stunk it up for the VIPS. Amusingly, appropriately enough, it apparently had enough smell to where they covered the “Leon’s” vomit, in kitty litter.

Afterwards, I went and had brunch with some running friends, checked in with team Livestrong and let the trophy sit there for a while because I really do think it’s a team trophy.  A friend of mine had his post marathon party and it turned out that he had proposed to his girlfriend during her first marathon at mile 24. I went and had a drink with Amy Dodson who I had met at the Livestrong challenge in Davis and had done the half while having to take off her artificial leg 3 times during the race. I went to Matt Cotcher who had to relearn to walk and talk and had finished his first marathon in 4:19. I went and had a few moments with the Livestrong staff at a dinner. I never did eat a meal again yesterday because when I was about to, I threw up right before and well I don’t know what to do about that.

There were people who didn’t throw up and had not their best marathon. There were people there without cancer that would have been grateful for my time. There are people like Matt and Amy. There are people who were there doing their first half or full on behalf of someone who had run out of time. So I threw up some on the course and didn’t get my best time. But I ran as well as I knew how under the circumstances. And anyone who reads this blogs regularly knows I’m not about to give up trying hard. Some days you leave your guts out there and it doesn’t come with the glory you hoped for. But as a cancer survivor, a great attribute though a far distant second to being Kiana’s dad. So no guts, no sub 3 hour glory but the gratefulness continues. 

Sharpening the Axe

Abraham Lincoln wrote that if he was given 6 hours to chop down a tree, he would spend the first 4 hours sharpening the axe. The Austin marathon is less than 48 hours away and I wish I could tell you that the nervousness begins now but it began months ago. I get more nervous about this race than most others. One reason is obvious, I’ve literally been on a tv interview promoting it two years ago talking about how I’d put off brain surgery to do it. Last year I came back and despite it being my second best marathon and me being less than fully happy about it, I was graced to win the cancer survivor’s division. The other races while I’m always trying to do my best have all been out in the middle of nowhere with no landmarks that create distractions, I can literally just put one foot in front of the other.

I’ve sat here and thought about the mistakes I made last year. A gigantic one was making a playlist that made me think of sad thoughts along the course because the person who I’m involved with legal issues was cheering me on and was now not there. It’s impossible to not think about things like this even with a screwed up brain with memory issues so I’ve made some decisions about how to sharpen the ax. I created a playlist that acknowledges some of the issues but it’s always overcoming them or at least keeping going. Carry on will probably still be my favorite song on the playlist… “May the past be the sound of your feet upon the ground… carry on.” And if I start to think negative thoughts I’ll try to focus there as well on the lyrics “I’d like to think I can cheat it all to make up for the times I’ve’ been cheated on. And it’s nice to know when I was left for dead I was found and now I don't roam these streets.” And though tonight I go to a new livestrong thing and am going to be part of a photoshoot tomorrow morning and people think that meeting me will be an honor (I’m just a guy whose very proud to be a great dad and lucky enough to be a fast guy) I’ll think of that lyric from that song as well: We are not shining stars, This I know I never said we are” And even if my head is on fire, my legs are just fine and I’ll carry on.

Within that first mile, I will be passing the court where that divorce happened but rather than think of it as a negative decision, in the end who wants to be with someone who each of you makes mistakes that separate rather than help you endure during rough times? And as I worry about that it may be a place that custody is challenged, I remember that two times we’ve been there and other than every other weekend, my daughter sleeps and wakes up in the house she was born in. So I will pass there grateful for that.

Not too long after that the course, I pass the place I no longer had the memory skills to work in the legal field, as I pass it by, rather than bemoan the job loss, I will pass there grateful that when this all started their insurance didn’t cover Duke the way it would have MD Anderson or other places but it covered some of it. And I still have friends from there which have donated to cancer things, had meals with me in prep for this race and will be cheering. So I will pass there grateful for all of that.

And not too long after that, I will pass the hospital where this all started, the one I snuck out to run 8 miles in what seems forever ago. And people have asked me if I’m not angry about having cancer or afraid of dying. Neither is true but I choose to believe that catching it early and getting sent there with friends and family all around before a biopsy gives me one more thing to be grateful for and that if nothing else, I am still standing.

I’ll eventually pass the Livestrong Mile and team Luke’s which were not even on my radar and now they are part of my rescue team, providing me with hope, motivation and inspiration long before I run by them. And I’ll be grateful for that.

And a few miles after that, I’ll pass the place where I collapsed last March. And while that scares me, I will think of the Avett Brother’s Once and Future Carpenter Song… “If I live the live I’m given, I won’t be scared to die.” And rather than stop running after I collapsed well, I got up and got back to running and I’ll be grateful that I still get to run by that spot.

And then when it starts to get hard around the halfway mark and lonely after the half marathons have split up their own path, I’ll pass within sight of the hospital where my daughter was born. This race people think will be easier because I won’t be pushing a stroller. Those people are wrong. Yes it’s heavier but when inspiration is literally in front of you and the world’s best cheerleader is within an arms reach all races are easier. But strollers aren’t allowed on this course so her handprint will literally be on my bib and that lion and lion cub tattoo are on my right arm. And part of a valentine that she made that me cry.  

And yes on the way home, I have to pass by the neuro oncologists office, by the neurologist, by the neuropsychologists, by where I do bloodwork, by the original neurologist and while sitting in medical appointments is no fun, each of these guys gets that I’m sitting here trying to fight to keep running so that this heart keeps beating for the love that lion cub.

I’ve put in the miles. Not all training runs have gone perfect, not all races along the way have gone perfect. The weather is a little warmer than I like… But I’ve put in the training and that’s one way I’ve sharpened the ax. I’ve created a great playlist perhaps my thoughts about the results most encapsulated by another Avett brother’s song, Head Full of Doubt, Road full of promises:

There was a dream and one day I could see it
Like a bird in a cage I broke in and demanded that somebody free it
And there was a kid with a head full of doubt
So I’ll scream til I die and the last of those bad thoughts are finally out

There’s a darkness upon me that’s flooded in light
And I’m frightened by those that don’t see it

My screaming is my running and I hope to be screaming down that course with my feet though if things go well or bad the screaming will probably come out my lungs as well.

 The training has put in the physical strategy. The songs I’ve put in the playlist and this blog shows that I’m trying to put in the right mental strategy. It’s been announced to others what I hope and am trying to do which is break 3 hours for the first time, an 8 minute pr. No promises but I’ll tell you this, I will get across that finish line giving it what I had. I’ve spent a lot more than 4 hours sharpening that Axe and I hope I can get it under 3. But even if I don’t, I’m taking that medal home from chopping down this marathon tree and I will still love running and all that keeps me doing it.

Resistance and Mastery, not Absence

Mark Twain wrote that courage is resistance to fear, mastery of fear, not absence of fear. I’ve never been afraid of dying… I’ve been afraid of the side effects on those I love that we’ll miss moments of each other’s life. When this diagnosis came on, I never missed a running workout. I still rarely miss them but lately they’ve been conflicting with Kiana’s activities sometimes and those always win out. But on Thursday at my groups workout, it was bragged about how one of the guys won the 5k workout. He’s a good guy and one heck of a heckler so I emailed him that the first time I came in first with the Ship of Fools the next day the brain cancer stuff started and he said he’s not a guy who lives in fear so he will always gun it in. He was speaking tongue in cheek  about me being a scardy pants but the simple truth is that the second time I woke up in an ambulance I skipped the group workouts when they were on the same route I collapsed in for the next couple of times they did it. It’s a route we take often so it would not have been feasible to skip it forever but it took a while. After that time, I stopped running with Kiana altogether for a while. It took 5 months before I would do it again. I’ve done it at least once a week since I restarted putting in some safety devices like the GPS tracking device.

Yesterday, the new hospital that I’ve been going with my neuro oncologist was having a mock surgery day and I took Kiana. She got to play with some of the tools that went inside my head (as well as see things like a fake birth and getting on a helicopter). She had fun doing staples and loved the game of operation. I’ve often joked that if she becomes a neurosurgeon that this is all totally worth it so it was refreshing to have her see all this stuff with enthusiasm, joy, curiosity, helping me build resistance and mastery of my fears. I get the question of why I took this insurance instead of just finding another job on occasion but it’s not because I’m afraid of dying, it’s because I’m loving living. I mean besides that it’s what insurance is for and that I qualify for it, if I won the lottery, it’s exactly the same thing I’d be doing, hanging out with my kid more! And I am lucky enough that I have a child, who likes myself, is not that materialistic. This week and weekend some of the best joys was simply riding up and down the street on a bike, making Valentine’s things (she had to make them for her classmates and I had to make one for her), she gathered snails (and showing that she matches my extroverted she put together almost 30 of them and said they’re happier when they are together). We made shaped pancakes.

We did all kinds of things for Valentines (she’s a fan of holidays) and unlike Halloween this doesn’t bother me at all because for hopeless romantics like her and I it’s a lot of fun (with that said, I’ve long joked that I’m becoming catholic just so she becomes a nun and watching her hand write I like you and you’re fun to boys in her kindergarten class made me want to start a bonfire).  Two  years ago, I took my exwife who would crush much hope for me Valentines day. Some of that was my fault as I was thinking about the marathon a few days later and a surgery a few days later instead of focusing on the date. Last year, I went to an anti Valentine’s day party (had the best break up story just for the record). This year, I asked the girl who was kind enough to kiss me at new years and come with me to this neuro oncological appointment out for an activity that she says she always gets annoyed at, bowling. I figured if she has to watch me talk to a doctor about my deficits, I am going to try to push her. We haven’t had any formalizing relationship sense and the guy whose last break up is on youtube and hasn’t had a girlfriend since high school has some serious fears of all those. One of her clearly more intelligent than her friends has said,”I’m not sure why she keeps hanging out with you. You have more baggage than they allow people to check in on flights.” I can certainly echo that sentiment but she took the date for V-day.

And yesterday I ran my last 10 miles at marathon pace which I am hoping means I only have to run  16.2 next week. But the marathon course appropriately enough passes next through the hospital where this all started, next to the place I collapsed, near where my neurologist, oncologist, neuro oncologists, neuropsychologists, next to the job I lost, around the court complex where custody will be decided. And humans have a built in fight or flight syndrome and I am never quite sure why I run so hard whether I am fighting or flying from my cancer but let’s assume that day I’m doing both and I trust and hope that fighting wins on that day.  

But there are also great point along that course by the grace of the Universe. By the grace of Universe, mile 8 for Bib #8 kid is the yellow mile one that is sponsored both by Livestrong and Luke’s locker.  There will be friends all along the course including one from the medical team, it’s an awesome playlist I’ve created , Kiana’s handprint will literally be on my bib, I have meals planned with friends from long before this journey, friends from this journey and will trust that I’ll make a few friends from the future part of the journey. I don’t know how to dye my hair but if anyone will give me a clue, I’ll dye it yellow for this race.  And when it’s done, I have faith right now that this, my 6^th marathon will be the best and I also dare to dream that it will be the fastest.  I am scared of many, many things in life but I took Kiana to the hospital to see some of my fears, and they aren’t absent but for as long as we can, we’re going to resist and master them. 

World Cancer Day-Dispelling Myths

Two weeks before this all started for me, my friend and I were out having dinner. We had both donated to a friend who was raising “money for cancer.” He’s an improviser and I’m a smart ass but in the course of that dinner we joked shouldn’t this be money against cancer. Today is world cancer day even if I think it’s misnamed, it’s probably a good day to check some realities (check some of the more scientific ones at http://www.worldcancerday.org/) .  Another friend today joked are you celebrating it because cancer has taken of your world? (with that said, please consider making a donation to the brain cancer event at Duke http://dccc.convio.net/site/TR/Angels/AngelsAmongUs?px=1118121&pg=personal&fr_id=1150)

The beauty of that website and point of the day is that it dispels some facts, ideas, myths about cancer in general and makes them more whole. Let’s do some of that that today with my own story. Someone who is a good kisser and came to my medical appointment, reads this blog and has watched the livestrong videos asked me “why do you say your cancer is rare. I looked it up and it’s the most common type of brain cancer.” That is correct but when I say rare, I am referring to the fact that less than 2% of cancers are brain cancers, diffuse astrocytomas occur 7 per 100k people, 3 in a million in the left temporal lobe and roughly 1 in a million where I have it.               

To this day, someone who left in the middle of the cancer, two weeks after a surgery, when I wasn’t cleared to drive and someone was at home supervising me and whose email signature to me is now this: Liestrong (v):win at all costs; act innocent; crush whistle blowers' credibility; give crumbs to charity as a coverup; admit culpability only when caught red handed; and always act like a victim, or remorseful criminal on Oprah's! says that cancer had nothing to do with her leaving me. I don’t know how to respond to that other than that every relationship has issues but cancer made me aware of many and I guess her too. I chose to try to correct them. It tells you something that I bought a house a month before my daughter was born but had put very little effort into any room but Kiana’s until after I came out of brain surgery. One of the jokes that was made in that original ER was her saying, everything I’ve put up with and now you’re dying (how much truth is told in humor…?). Both doctors and other survivors have seen this equation far too often. It tells you something that there were ZERO other people with this diagnosis in a national network and LOTS with a similar situation of getting left in the middle of the crisis. I’ve met some who were drawn closer together, others who were pushed apart and those who like us apparently one was trying to draw while the other one had turned and walked away. I don’t know anyone who has an ideal marriage but at the time of the diagnosis, to me it had been a great year but perhaps cancer was the magnifying glass that finally inspired both her and I to change, we just changed in different directions. . I was committed for better or worse, richer or poorer, in sickness and health till death do us part. Someone else apparently signed up for just the upper half of that equation.

There’s been many many comments to me about this blog, some publicly here, most on facebook, and some private ones. My favorite one came recently in regards to the last blog… cancer changed you and I like the new you better. I do too, even if it means I don’t live as many years because in some ways, perhaps all the significant ones, I’m living better. There are few phrases I hate as much as illegitimate birth since all births are legitimate to me and origin doesn’t matter so much as what you’re doing with it now and where you’ll take it from here.

That complement of me not knowing to quit, I hope it’s right and not a myth. But when I’d watched my life fall apart back to back, cancer diagnosis plus getting left literally in the middle of the night. I stopped running, the guy who hadn’t blinked when he was told he was dying and slept fine the night before the biopsy and the surgery, couldn’t sleep at night. On the nights Kiana was here I’d just keep working out and it never put me back to sleep but it usually exhausted me enough to where I slept well the next night. On the nights Kiana wasn’t here, I was lazier and drank some tequila, not to feel good (my drink is rum and coke) but because it somehow managed to put me to sleep. There are times I’ve said out loud and thought it even louder that if a court really does rule that I should only have supervised visits that I’m done following up with these doctors and I’ll die when I die but those are moments where I feel cornered by cancer and between fight and flight, I am usually a fighter. I just don’t know how to fight there. I’ll be training for that Duke 5k as soon as this marathon is done but the simple truth is that for the nice compliments I’ve gotten from running, I don’t even know what I’m doing. I follow the coaches training plan and look down at the watch to see if I’m going the speed they told me. I’ve been fortunate enough to where fight and flight one can’t tell the difference which one of the two I’m doing while I’m running. Most of the time, I’m not even sure.

Last Friday, I volunteered for the 3^rd time at Kiana’s school mystery reader. We read a couple of Dr. Seuss books and a Valentine’s Day one. The teacher usually gives some hint and the kindergarteners try to figure out the parent who is outside the door. It was more than a little disappointing about my gender to realize that they guessed me immediately because the first hint was someone’s dad and, in that classroom, it’s only been moms who have been the volunteers. Saturday I Volunteered at the special Olympics and I am proud to be a good dad and have a great mother but what some of those parents are doing for those children to be able to compete in those make my 30k trophy seem like a myth vs their accomplishments.

Then on the bike ride home… I watched a motorcycle flip over a median and was the first responder, mostly because I was on a bike and it’s easier to throw it down than to park a car. I was trained for this both having a probation officer and head lifeguard in previous lifetimes and stopped traffic. I did what you would expect, stopped traffic, checks his pulse, called 911 (fortunately an actual off duty EMT stopped by a few seconds after) and started giving me more technical terms to tell the 911 operator. A crowd started to gather and I ignored it until in what was immensely bizarre to me a man with a little boy came and stood the closest. In certainly a less than pleasant voice, I told the crowd to all get back to the sidewalk and they all did. The man’s phone would then ring , it was a few feet away and “dad” was calling but I didn’t answer it. It was a locked I phone but there was a text that said, “did you fall asleep?” The guys eyes were open but it seemed like our eye contact didn’t seem real. Within a few minutes, EMT’s were there and handled the situation but when the guy came to he was so disoriented that he was screaming and telling them to get off him and it appeared they sedated him. As I headed back to my bike, a woman yelled out at me. She had been behind the bike and during the events had watched the off duty EMT’s kids in his car while he and I (by that I mean mostly him) handled it while the ambulance came. She complimented me and said “you handled that perfectly, I am a cyclist too and so I stopped because that could be me or you anyday.” And that’s when it hit me… and I started shaking and crying those last few miles home. Nicole, a doctor friend whose been mentioned a couple of times has pointed out to me that both of the times I’ve woken up in an ambulance I’ve been lucky that 1 time I was at a meal and the other time I was in a run and that both times I was near friends, that both times I’ve woken up to a familiar face. I obviously don’t get any follow up on what happened to that stranger but I felt both bad for him and for his family who would have to wait a while before hearing anything? That bracelet with emergency contact info on my wrist will stay as long as the Livestrong one does.

I was supposed to go to a party Saturday night but I was too shaken up to do it. For those of you who think some of these entries are all over the place, you should have seen the stuff I wrote down Saturday night. Kiana knows how to call 911 and we’ve practiced me collapsing and her getting my phone out of my pocket or her using an inactive one she uses to play with but knows that she can use for that. But I certainly wondered after seeing that if maybe that request that I only have supervised visits is so unreasonable. It’s not in anyway because I don’t think she can’t handle it but then an adult could walk her out and she wouldn’t have to. I sat and cried and wondered and that day may come but I still believe that it’s not anytime soon. How can anyone not believe that when I ran 30 kilometers while literally pushing her?

I had a Superbowl Party Sunday night. There were friends both old and new there. I went and volunteered at Kiana’s library today and a volunteer there and I traded some stories. She was there because she has Parkinson’s and got bored just being at home (doesn’t have a child at the school). I have enough hobbies to where I would never get bored but I go because I want to still contribute and try to learn some new things (turns out getting books into their proper places is more complicated than I ever realized). Kiana and I started the valentine’s cards today, all hand made. She has to make one for every classmate but she put extra effort into some because those are extra special friends (she even made one for a boy in which the two of them were in a heart and got a stern talking to about it… j/k)

I’ve lost some friends in this journey. Some because life sometimes just happens, others because I can be a pain the ass, others because they disagree with how I’ve handled some of this stuff ie so publicly, others because they (as perhaps intelligent people should) avoid drama like the plague. Some have been constant. But I’ve also gotten closer to some people, both old and new. One of those cancer friends I’ve made, two weeks away from his first marathon where he overcame physical deficits to be able to do so, he above most people has helped me realize that cancer helps you realize which parts of your life are myths and which are facts. Some of that like this damn tumor is impossible to tell apart, some healthy parts of me and unhealthy parts are intertwined and some of those friends, counselor, ministers have been the doctors in helping me fight off some of the garbage.  I am sorry for the deficits of mine that made some of those relationships into myths but I am grateful for the relationships that this continue showing they are in their own way the facts that matter the most in my life.