Thursday, July 17, 2014

If It Ain't Broke

There are some people who view my cancer appointments differently than I do. They are, at both some level logically and emotionally, more stable than I am. I've met cancer patients who just assume it's a regular check up but those are generally ones whose cancer treatment is about whether or not something has returned or metastasized, not whether or not something is stable. I've never been afraid of judgement so if me being stressed for a few days and working out extra hard or being atypically emotional is that bad... well, have at it. So in simple frankness, I do stress when they are coming up.

I went in to see the neurooncologist and just sat quietly in the lobby... well, I did a few things before that. I love photography and jokes but while all levels of them will make you smile or emotional, there are photographers who even when they look at their pictures the depth they have is what they try to capture, worth a lot more than a thousand words and that's often what looking at an MRI feels like. I let my imagination wonder to how much the "pictures" of my brain really capture my mind? I always take home a CD and look at it like I have some clue how to read it... I wonder since I've got them all if there is anyway to make a greatest hits album. For the first time ever during an MRI, I actually hit the panic button in between the contrast and no contrast session. I wasn't panicked but I felt like I was going to vomit after they injected the medal dye and figured they wouldn't be a fan of that in their machine. Different explanations were thrown out about my the medal contrast went in too fast or what have you... I didn't worry about the cause, just let it subside and we get the MRI done. There has been exactly one MRI I didn't vomit after and let's just say that the number did not double.

So, I'm not sure quite why things have gotten more and more stable for the last year and a half but in trying to keep with the pattern of previous medical appointments, I did the same thing I've done before the last few. I met with my counselor/minister and we had breakfast and prayed. Never before nor at this one have I prayed to beat cancer... I figured if there's a guy who runs the universe he can decide what he wants to do on that... I just asked that I do the best I could with whatever news came.

I also rode my bike to the doctors sinceI'm not superstitious but I am a little bit stitious. Actually, no I am not stitious at all but I do know that many of the ways we try to capture the universe are less than adequate. But there have been zero appointments that I've gone to on a bike that we've gotten bad news so I just kind of decided if it ain't broke, don't fix it and rode there in the Texas summer hoping that if the pattern of behavior got me here, well let's keep it going hoping for the same results. No such thing as false hope right?

The doctor has a new assistant (the old girl was a lot cuter and more clear spoken than than this new guy; guess which one of the two I'll remember better). A few friends lately have asked if I've lost weight (I think my spartan working out might be tricking them cause of my new massive biceps j/k) but the scale at the doctors office said I had not lost weight. In those type of circumstance, there are times you just have to trust your friends over a scale ;-).  At every doctor's appointments I read through whatever they print out or hand me. In previous ones with blood work, I'd noticed that I have no new std's (nor any old ones in case anyone was wondering). I asked why we were testing my blood for that and it turns out that a couple of STD's will break the brain/blood barrier and so if anything shows up in the MRI they want to know that it's cancer and not anything else. But it's kind of amusing to be tested for STD's. And while I certainly should be in no hurry to get engaged even if I've finally opened up my mind to being open to a relationship for the first time in years, I was rather amused that at this doctor's report the MRI report showed that I had no possibility of being pregnant. While that was obviously disappointing, I comforted myself by saying I've got a cute kid already anyway and maybe if I don't get pregnant eventually I'll just have to adopt.

Anyway, he showed me the MRI... On the side where the surgery occurred since it could only be "attacked from one side" without destroy language and memory functions, Dr. Vaillant said the tumor and scar tissue were no longer distinguishable which apparently is a good thing. I used to go to Duke before we had a neuro oncologist in town and one of the many remarkable things about Duke is that they had a brain MRI almost a decade before anyone else. I thought that was a bit of an exaggeration till this appointment where a secure log in for electronic records was being used since I first started this journey with them almost 4 years ago. Duke had it in place then and I don't know how long it had been true at that point but anyway, if this blog shows anything, whether records are kept electronically or in paper is only relevant in how you can access them. Maybe it's why some of those meaningful things in my life have to be emailed but others I decide are worthy of being hand written or pictures that should be printed out.

It was stable and I told him about the problems with pharmacy issues (for a drug I've been on since October) I am now on the 3rd pharmacy. Costco never had any problems with it but when I got new insurance, it wasn't covered by Costco. Out of the options, I switched to CVS because they had taken the stance they were no longer going to sell tobacco products at a pharmacy; a noble stance in my book. However, while there were never any serious issues customer service wise, they just stated they couldn't seem to find that drug and the pharmacist suggested that I move to another drug. I moved to HEB finally and the pharmacist there also acknowledged a new drug was easier to get. Still, there are many reasons I love my neuro oncologist. He's a runner, he wears bow ties, he's practical but as I talked to him about the suggestions from the pharmacists for moving to a new drug... he said that he thought there was a way to keep refilling it through the hospital itself and since we finally found a way that had stopped the seizures, it'd be better to continue with it because if it ain't broke... don't fix it. Unlike cancer, he keeps growing on me. And unlike any cancer growth, it's a good thing.

Then he said probably the most pleasantly surprising thing any doctor has ever said... we don't have any appointments, MRI's anything until 2015! In 2010 when this all started, I had a hospital stay and more appointments in 2 months than I had in my entire adult life combined and those were all for sports injuries. In 2011, it was 12 for 12. In 2012, it was 10 out of 12. In 2013, it was 7 out of 12. And in 2014, assuming, dreaming that there will be no more seizures or anything unexpected, there will be five appointments that all occurred in April and July. So for the first time since 2009, looking down the road starts to feel a little less crowded with doctors and I'll see them more at projects we're working on for cancer patients than I will for medical reasons... And that just feels crazy. I like the song "I want crazy" but it turns out this is the kind of crazy I want where normal feels like crazy.

Someone wanted me to go out and get a drink with them (I did not but they were nice enough to go out and have one for me; it's like my batchelor party once upon a time where a couple of friends were nice enough to go to a strip club for me without me). I let this medical news sink in for a while but I biked and took a nap. Then I went on a walk and sat under a bridge thinking, absorbing the thoughts and experiences of the greatest gifts of the universe (being under a bridge is safe from murderers right?). I certainly reflected on some of the mistakes I've made, some from rushing into things or not doing them properly, some from not being open to the possibilities, some from letting too much of the past or potential future conflict with the present. Who knows what's coming but the future but my dream for 2014 was that it would be more predictable then the last few years has been and I am waking up to that dream more and more. There are certainly things in my life that I've allowed to stay broken too long that I'm finally working on.There are parts of my heart that are broken but I think it's possible to love with all the pieces. There are parts of my brain that both the appointment in April and yesterday show haven't improved and are broken but holding.

 But afterwards I went and ran on the track... And I ran with conviction. Then I had a good meal and a good nights sleep with some good dreams. Because if it ain't broke, don't fix it.













Monday, July 14, 2014

Make Him Work For It in the Pursuit of Happiness


Every once in a while I get to do interview or  speeches or guest blogs  http://brainpower5k.blogspot.com/2014/07/iram-j-leon-survivor-story-on-bp5k.html) ... there I try to clean up the story some because I get the privilege of stepping back... of getting, giving, contemplating perspective  (and also because it's going to be complete strangers reading/hearing it as opposed to you, my friends, cause only my friends read this right? ;-). But here where we pick up hitchhikers,  this is just train of thought and a cursory reading of it will tell you that I've made mistakes, grammar emotional and otherwise in pouring my heart out to a blog... so maybe there were plenty of reasons why the George Clooney approach was moderately successful (or the most massive failure of my life depending on your perspective but I was amused that there's a picture of Clooney in a government museum in DC) because that intensity when dealing with someone should be done proportionally, properly paced remembering that a good relationship is more like a marathon and less like a track workout. And while marathons are hard, I also hear I won a marathon pushing a stroller once I... so...

While I still am blown away by the privileges, the opportunities  that came from that. The shirt that I wear during Spartans, the make him work for it shirts (makehimwork.com), the founder, David Landau was kind enough to get Kiana and I out to his home in Washington DC. I'm not going to get much into politics because I voted for Pedro (honestly because I think that both parties have some very valid points and some incredibly dumb ones but because it's such a divisional system with only two choices, it gets tough to be productive. I'm a guy with problems with gray matter and while some of the world is black and white I'm a bigger fan of the
rainbow, those moments where you stand in a museum with multiple colors flooding in light through various windows, even when you turn around for sunsets and catch that even lights that are fading create a beauty if reflected right.

Still, when in DC this weekend, we did a tour on a bus-turns-boat tour where we got to see the big monuments Kiana and saw some of the great museums. When you ask her to describe her favorite moments, she talks about some of the historical monuments but she also talks about the butterfly garden. And I loved the historical stuff, some of which I'd never seen before but I also enjoyed the 12 mile run along the Potomac. And perhaps what made my day just as much was that Kiana was smiling when we got on the plane home somewhere comparable to on the way there, where she realized home and trips were both worthy of excitement. We had moments there where strangers became friends and where one of the friends I've made through brain cancer at Duke and his family came out to have a meal with us.

Cancer and it's side effects differ for different people. I've seen two people I love whose treatment ended earlier than they thought and figured out or are trying to what to do in light of that. For me, the MRI because someone made a typo they wanted to delay my MRI today. Frankly, the sitting in suspense and having things on your calendar messes with you enough to where that's uncomfortable but that's a fairly  petty reason to be upset. The MRI was scheduled for today (mostly) because Kiana leaves to be with her mom for an extended summer visit. It is possible/likely that we may be tweaking the anti seizure medication either way. And of course if something shows on the MRI cause I have such a great track record of how I get emotionally detached during medical times, or if I have something to deal with the medication, I thought a 7 year old would be best having fun elsewhere. The time at which the MRI was to make it possible for someone to be there and in my best dreams they will show up in one form or another but either way...

Let's just say when they tried to delay it... well I showed up at their office and sat and waited and waited while they made phone calls and they tried to track down their mistake and asked why I wouldn't just be patient and have it happen another day. I said that today Kiana leaves for a couple of weeks and anyway, the MRI is happening today as scheduled even if they interrupted my days regularly scheduled programming to make it happen.

So whatever will show on the MRI has already been determined... like a good or bad photographer... this is just documenting it. But tonight sitting in suspense, I should go watch a movie or something to distract myself... maybe that new Jersey Boys one to remind myself that my life is just too good to be true or that Planet of the Apes ones to let out my inner monkey. Or maybe go do a track workout where I keep making him work for it. Either way now, lunch is done, the MRI is in a few hours, and whatever happens today and tomorrow I hope to keep giving it what I have to make him work for it in the pursuit of happiness.



















Wednesday, July 9, 2014

Relearning to Live

Any event that heavily disrupts a normal life jolts us... there are those who seem jolted by someone not turning fast enough after a light turns green, those who it seems it takes near death to budge them. But the last couple of months, I can honestly say I've just been waking up to a few parts of life.

Self image is an interesting thing...  most of us have the communication capacity to realize that the image we present to ourselves both to others and ourselves isn't always (ever) quite accurate. We digitize it when we look at our phone and our cameras and realize that the picture we were trying to capture it makes us smile even bigger than the selfie we caught or makes us look down in a bit of frustration that the thousand words that particular picture is worth aren't ones you should probably say out loud. 

A few entries ago when I wrote from dream to dream, I talked about how Kiana went back to bed to "finish a dream." But if there's anywhere God's been kind enough to give me wisdom and over it's through the eyes of what has to be His child because a few days ago, she said I was dreaming this and then I woke up and then this is how the story finished. And I loved that she recognized you could wake up and finish your dreams. There are many things the Universe has been kind enough to give us, cool summer nights where it's somehow just right to take in the stars, sunflowers, bluebonnets that against a green background and a blue sky make you realize that life doesn't have to be idealized to be appreciated. But whether or not the universe has a capacity to make choices for you, it still give us that free will to live with a great level of choice.

I am realizing that in some ways I'm just waking up from a long, long hiatus. Freud talked about regression when trauma comes up. You will meet no one from my entire academic career (despite the fact that I was in track and in cross country) that remembers me as a runner. Now there are many times where I get introduced as a marathon runner etc (in all profiles where I'm mentioned in the program I have had removed marathon to just runner because well I like plenty of distances). But the fact that I relearned the love of running and of hanging out with a small child was somehow both regression and progression. But there were some things I definitely suspended, quit trying on or believed were completely gone. Some of those are and always will be but to think that because several things are lost that none of them can ever be replaced wasn't my wisest emotional choice.

I've talked in speeches and on videos and on here about the big  cancer stories I've come in contact with. Those seem to get more attention, fair enough. But I've also talked about the little ones and those still keep moving me. I still continue to meet the girl who is gorgeous in every way who has a hard time seeing that because her self image still hasn't quite woken up from being the bald girl in the wheelchair. There's the guy who takes a chemo bag attached into work for a few months and then when he stops taking it in panics that he forgot it then remembers that it's done. There's the older guy whose cancer is slowing down but not enough so they are going to start a new regiment and so he starts making tapes to his daughter about some stories about his life that she barely knows. There are people who are so intent at their jobs, hobbies, passion that what drives them is the ability to get back to them and there are those who it makes them question many things if not everything and then shift accordingly. For some it's a short lived thing not much different than a fad diet where they lose the weight for a few months. For some that shift is permanent, training with more conviction for a spartan has me in the best over all shape in my life. Meeting these people, writing this blog, meeting with a counselor and praying, here's hoping that's true there too. 

Perhaps one of the reasons I'm starting to finally wake up is because they let me start driving again. I've biked everywhere I needed to go on my own to feel some level of independence. But anytime Kiana needed to go somewhere or when there was a race, I got a ride. People presume it was not that big of a deal because people carpool or ride the bus all the time and of course they're right but that self image of hey I'm going to be a contender in this race but can I get you to take me there. It's not even been three months yet but I finally sped and parallel parked all in one weekend and it was a cool little feeling (I mean speeding is bad, dont' ever ever do it). And perhaps it's because for the first time in almost 4 years assuming that the MRI and medical appointment go well... and I don't make that assumption but I am trying to take a lesson from Kiana and as I'm waking up from a dream, trying to write my own ending. But assuming it all goes well, for the first time since this started, I will have more months without a  brain cancer appointment then with one. And as I'm waking up to driving and each day getting less nervous, I need to balance remembering the daily "don't wake up in an ambulance" pills which make me think that today might be the last day and planning for tomorrow. And continuing to love the people I love to the moon and back but also if I ever manage to find someone to ask to see them on some tomorrow and maybe there will be a tomorrow where they let you borrow their heart.

So as I've talked about people who had to relearn to walk or talk, people who have had to make adjustments to learn to breathe in a more helpful way, to step away to feel bad for a little bit and find a bathroom, the ones who inspire me are the ones who did so and continue to do so. There are days I'm exhausted enough and other cancer patients are too where during a medical test, you have to be honest and acknowledge that on that day, you'd be relived whether the results came in as looking better or worse. As I've had to relearn that the side effects that I've accepted as normal of shifted sleep patterns and vomiting, a shifted sense of time due to memory issues, some spatial orientation issues (it's interesting to me that some people noticed this stuff shortly after meeting me but don't get around to telling me that till two years later because they think it would make me feel awkward). Still, for many of us the side effects of cancer affect the way we view how we see our life and ourselves on the emotional level as much on the physical one.

There is a video, posters and once upon a time internet banner that said, I was afraid the way I handled cancer meant I pushed someone I loved away... I've been on no fad diet to shift but I think the work I've been doing on that has finally woken me up to relearn to live, love and dream in ways I'd hidden from even myself. Here's hoping and trusting that's the exact same attitude I walk out of the neuro oncological appointment with next week. 

Sunday, July 6, 2014

Here in the Unknown

Anyone whose read this blog for too long knows that the entries get to be a bit more frequent and sometimes much longer  when the medical stuff is coming up... especially the MRI's... so be forewarned as you read this entry. Somehow I am the guy who lives with dizziness and will still roll under barbed wire for a race... I am the guy who puts off brain surgery to run a marathon, who wins one pushing a stroller, who wakes up in ambulances and runs 48 hours later... And because I happen to be fast it makes for good headlines... but as I've said all along, running is my therapy and how much I run and how often I run tells you how bad I need therapy, in case that's not obvious let's just say that on both days this weekend I ran more than my scheduled called for on two long runs. And while there are times all of us post on facebook because it's how we attune to our friends and/or feed our ego by the fact that getting some likes is  few seconds worth of social reward, it may tell you something that my cover photos recently have changed to pictures of me and Kiana or things about hope for no other reason than subtle reminders to remind myself to breathe.

I wish I could tell you I've mastered this medical appointment stuff. I'm not quite sure why there's this impression that I handle cancer greatly when I get like this around medical appointments but I am proud/relieved/happy to say that each time the stress before takes longer to set in and that the hope is greater ... That's progress isn't it?And sometimes that's the only measurement in life right, is progress (is that progress of growing hope or just accepting a disruptive machine that's checking whether or not something in your brain is growing as far too normal? I know I'm known for few victories (the only race I have all of July was today's annual church pie eating contest and I took first place and at some level the discomfort since then is on par with some of athletic victories) but when I used to be a probation officer I said sometimes the way we measure progress is that some of these kids grow up to be misdemeanor criminals instead of felons. Or as a great preacher Tony Campolo once talked about how he became friends with someone who was picked on a lot for being a "skinny wimp and then said, "yes I know people want to hear and I loved that wimp, and nurtured that wimp and today, today he is president of the United States" but the story was nothing more, which may be the greatest thing ever, but that "we became friends and had some great childhood memories together." I've not mastered my fears before medical appointments, just gotten better at them...

And on the dating scene or being open to romance that I've ignored for so long, I've just began to be open to improving. The first girl I've asked for their number, the first girl who I was honestly pursuing... the first girl who I would love to be taking to an MRI as a girlfriend... I think in the end the story will be as simple and as complex as that I scared her away with too much intensity too fast (the fact that the timing was around the MRI was unfortunate at best). Call that rust from not having really given dating a fair chance since i was 17 (cause we were all so good at it then), call it as one friend who put it slightly more bluntly than I will on here that they forget that despite the fact that I have other experiences with the George Clooney girls you can't really call that dating. I'm not an idealist even as I get from hopeless romantic to hopeful romantic stage but let's all be realistic that your chances of succeeding with someone you're dating are statistically a lot lower than my chances of beating brain cancer. But when you connect with someone the moment you meet them... well maybe it feels to good to be true and the awareness of that and the hope of that are both a thrilling and a tough roller coaster to ride. 

But I took the George Clooney bet that I'd never get married or have kids again not because of bitterness or hurt from my marriage collapsing to an affair during brain cancer (okay okay, not only because of that) but out of some 'obligation' that no one should ever have to sign up for this. As I've spent the last few months thinking about it, the idea of a real relationship was more realistic because at least the adult had a choice in the matter. But the idea of children I was truly closed off to because that person wouldn't have a choice in the matter. Livestrong has a strong fertility preservation program but I've wondered whether being open to the idea of having kids after/with cancer wasn't incredibly irresponsible or just a way to pass on life. My cancer has no known genetic factors but it's also not clearly going to be gone while our technology remains the same (people ask if this is a routine MRI. I don't know what a routine MRI is since We do them so often and if there's growth we'll talk about possible treatments and if there's not we'll just schedule the next one... I think people forget that they never took the tumor all the way out. They just reduced it and the doctors said then and all statistical data said, it was a waiting game and that odds were I wouldn't make 40. The median survival rate for this thing is 4 years without surgery, 7 with. I'm closer to the 4 year mark but obviously the outliers are all over the place). Still, I suppose if there's anyone who ever gives me the idea, the hope that the rest of our live could be shared... if they want to have kids, it should definitely not be a deal breaker right at the start. I imagine if there's anyone I could imaging living and dying to, even if it doesn't happen, the chemistry would be there to where I'd understand that line that you can see your unborn children in her eyes. Anyway, I worked at a nursing home in high school which had the worst logo ever, "when love just isn't enough." Maybe that's true but if i get a choice into what life philosophy to take from here forward it'll be what I wrote into a wedding book I attended recently, "Love conquers all."I don't know if I'll ever lose the George Clooney bet, I rarely lose bets but if I do, there will be no one who ever smiles while they are paying out a loss as much as I will. And while everyone has deal breakers in what relationships they want to pursue, for the time being, I've decided only two matter. They obviously need to get along with Kiana since those wicked stepmother stories are so horrible and they better be able to dance cause who wants to spend life with someone who can't dance ;). 

So the guy afraid of getting commitment is trying to get better. While I may be too little too late to get a successful yes on getting a girlfriend to an MRI, I choose to be grateful that they nursed your communication skills to addressing things that you wouldn't even say to yourself. And I don't know how the MRI or being open to romance will go. But one of the lines that got quoted a few times in the marathon media blitz was if everything goes right and all I did was hang out with my kid or if everything goes wrong and I all I did was hang out with my kid, to me that's a win/win. So for the journey that I've had in many areas, other than places where I owe apologies I have tried to deliver. But if the MRI comes out with scarier results or with the status quote,  well, let me quote Leonard Cohen, 

I did my best, it wasn't much
I couldn't feel, so I tried to touch
I've told the truth, I didn't come to fool you
And even though it all went wrong
I'll stand before the Lord of Song
With nothing on my tongue but Hallelujah


So I'm going to go to bed soon and then having a fun day with Kiana tomorrow and trying to sleep calmly. And trying to accept that the fear of the unknown is a poor way to tune in because the future is always unknown and always what's coming. And so here in the unknown, I choose to try to keep daring to dream that hope, faith, and love, the things the Universe has been kind enough to let me have some great experiences with, will keep being the known. 









Friday, July 4, 2014

Liberty and Death in a Box

It's 4th of July and I am grateful to live in a country full of freedom... I am always excited about the idea that men once realized that if there was anything the creator endowed us with it was the right to life, liberty, and the pursuit of happiness. But somewhere in the idea of taxation, representation, and what to do with tea at a party, they realized that most anything worth living with is worth dying for... I am not sure that those thoughts are coming from the most patriotic of places within me even as Kiana and I are going to DC next weekend... which is a relief because the day after I get back I go to medical tests.

So some of that stress is going on in my head is from future things but some of it is past things. Part of it is that this week there was an issue with medication and insurance, insurance and insurance, and perhaps most of all the fact that an MRI is just slightly over a week away. I am psychologically calm while I'm in that machine... I've even fallen asleep in it as opposed to some people I've met along the journey who need sedations just to get through the tests. But somehow, somehow that machine is still the place where I feel by far the loneliest and where I most appreciate friends and family. Then I see the neuro oncologist the next day where we'll talk about that and perhaps another shift for the anti seizure medication. It's an odd coin flip where if anything's gone wrong we may start on new anti cancer medication and if everything goes the right way we go from MRI's every six months to every nine months. How was it determined that these were the right time intervals?

It's around this time that I start remembering and looking at a box. There is a box that's sat in my closet for a long time, years. It's the Grand Canyon Box. As I've long said here, in a symposium and once in print, if and when certain circumstances line up and beating this is a very unrealistic idea, then it's time to pack up go the Grand Canyon and climb in and out till it's time to go since I'm not really the die sitting around in a bed type. And the reality is that shoe box, it's just a shoe box which isn't even halfway full, it only has a few items. It's the only thing that I'm committed to taking with me if/and when the time comes. The idea actually came from somoene proposing exercise of if you house was burning down and you could only grab a few things what would you take (most people would take electronic equipment containing pictures). That exercise of course presumes that these are items you want to keep as you move on beyond a building. My exercise is more of what thoughts do you want to have when you're facing life's final days. It's incredibly hard for anything to get into the box, even so a couple of things have come out, one of them to give away to someone. I am not going to get into too much detail about what's in it because even I want some sense of the personal. But like I said, when MRI's roll around, I start thinking about if I have all the right things in there. Without exception, they are all things that are supposed to make me smile from things from people and races. They range from high school till a few weeks ago. I don't suggest everyone make one of these but it's probably a good exercise to ponder what you'd put in it. I hope it's useless for years, decades and that when I finally hit 84, I think of it is a silly exercise in worry but it is somehow both comforting to know that what those items represent in my life existed and scary to think about that it may be in the Grand Canyon someday.

But even so, I am still trying to figure out what to do with my next few steps in life. I've finally become open as I said here that if all went well in April that it may be time to let an official leading lady into life part II instead of just George Clooney girls. Perhaps, I should have left those types of thoughts sequester until July but the girl whose number I asked for, let's just say I'm falling fast for her. And sometimes falling feels like flying, if just for a little while. And it was actually before I met her that it occurred to me that if it really does get any level of serious with anyone that it would be less than fair to expect the Grand Canyon to be an over ruling principle when asking someone to share companionship. And the idea of going that way is because of having watched someone close die from their brain being decayed and them not even remembering who they were much less who anyone around them was (it was also that end of life medical treatment is... less than a cheap deal). And while it originally occurred to me that if I ever get very serious with someone veto power over the Grand Canyon... it didn't take long to realize that if it gets to an intense commitment, as long as they are there, and as long as I have the capacity to make that decision, I'd almost certainly be trying to get another "The Notebook" type moment with them. Anyway, we're not at that level but in order to at least be open to the idea, for the first time in this journey, I changed the time of my medical appointment for someone to be more likely to be able to come, not less likely to do so.

But even so... well as I sit and worry about a medical appointment 10 days away, I am about to head out to a party for 4th of July, catch some fireworks, run some long runs this week, spartan train. Because I think the way I've been able to make peace with the fact that death and a box will come is by embracing life, liberty and the pursuit of happiness.





Wednesday, June 18, 2014

Award Winning

(on an introductory completely unrelated side note, if you've ever doubted that this blog isn't raw, uncensored or unedited, Livestrong which I love and will support till my dying day wanted to share the majority of the content of the last blog but wanted to clean it up to sound smarter than I am, http://blog.livestrong.org/2014/06/17/changing-centers-a-view-of-the-livestrong-symposium/, compare those two and you can see why I will never ever write a book :)

While we're on that side note I'll never  completely quite understand why I get invited to speak at those types of events because everyone else their has their brain working, I'm even more confused why there is media pieces about a guy who puts one foot in front of the other. Still, two of the video pieces that were done about me have won awards, one print award has as well and a third news one is up for contention. They're nice enough to let me know they won it though I have no idea how all that stuff works and I'll tell you a secret other than the ones where I am there when they are shown to people I haven't watched most of the videos.  I figured it has to be how cute my daughter is that wins the awards in the media. Still,  while making good content is their game, I am working on stepping up my game in running, yesterday and the day before doing back to back track workouts for the first time in forever. My upper body is in the best shape it's ever been. I said that if all medical appointments went well in April and my pick up line no longer had to be will you pick me up if I was cleared to drive I'd be more open to relationships. So hear me here and hear me well, George Clooney's engaged and while I may not get married one year to the date of when I meet a girl like he did but there will be no more George Clooney girls in my life. If I am fortunate enough to make a connection well, we're going to do it the old fashioned way and you know go on a date and pursue her instead of running from relationships and maybe like you know get a girlfriend for the first time since high school. If anyone doubts I'm serious I met a cute girl and for the first time in my life, though it took 3 tries, I got her number and got a date. I honestly don't know what I'm doing and it's probably a little more complicated than putting one foot in front of the other or obstacle courses, but hey if we're talking about awards, if life is a game, love is the prize.


But with that said... let's talk about a prize I actually have achieved and not just one I'm dreaming about... while Kiana's in the middle of a two week summer stay with her mom, she came home for father's day weekend. A blog came out about me from spartan on father's day http://blog.spartanrace.com/tribute-to-spartan-fathers-day-5-iram-leon/  which was incredibly kind. It was perhaps my favorite post because while I happen to be in three different Spartan things in June (the slow news day continues but the other two were about the Austin race and the charity challenge). I know good and well that part of the reasoning I'm getting parenting better than before was because I had so much room to improve before cancer. But like a medal at the end of a race, it's nice to get some kindness. It actually inspired me to do the workout of the day where I was supposed to carry a log for 1/2 mile increments where Kiana pretended to be a log. I hadn't carried her for anywhere near that long in probably a few years and let's just say she's growing.  Still, some of the workout was burpees and jumping  jacks and some of it was running side by side.

Still... that wasn't my favorite part of the weekend. We  had fun with flowers and yard work. We got a pedicure. But in a rare happenstance, she woke up before me on father's day and came and woke me up with her father's day present. Medals hang in her room of every race we've done together. There is a trophy case in the living room of the races I've managed to place in. And somewhere, somehow she'd thought of that making a trophy that said "Dad of the year" (though it's questionable whether it says dud of the year.). And I loved that she gave me that for many reasons but the main one is that it's "of the year." With the spartans, I try to get less obstacles failed and faster times. With the road races, I try to get a faster pace in. And what I loved about Kiana's father day present was that it was just "of the year." Not best dad ever or best dad of the century. Somewhere, whether consciously or unconsciously, she reminded me that relationship are something you should keep working on to keep them on top of their game. It now sits front and center in the trophy case. With all the races that I've ever won, I try to get back to defend the title. There's lots of those I haven't pulled off but some have been back to back titles. But in order to do it, it requires at least holding onto your game and usually improving it. That's what I hope to do with fatherhood and loving Kiana cause I wanna defend and keep nurturing in growing the qualities that let me get the title more than any others I've ever gotten.




Monday, June 16, 2014

Changing Centers

Maya Angelou once wrote "The need for change bulldozed a road down the center of my mind."  A woman known for many soft and hard words, that was the quote that couldn't quite escape me as I had the privilege of attending and sharing my story at Livestrong's Patient Centered Cancer Care Symposium.

For two days, there would be brilliant minds from doctors talking about new approaches in medicine to designers talking about the music centered teenage branch of hospitals about how to make the approach to cancer more "patient centered". The life stories of the speakers alone told you both about their personal history and the projects' potential. From the openers like Tom Kean who was retired and still dedicating himself at age 72 to help out with this cancer cause even after achieving some impressive awards to people like Randall Carter of Planetree and Ellen Beckford whose brains are much better me and whose selling point was somehow a great balance of both evidence and compassion, they shared bits of information of how the system could be much better.

But their characters were also revealed in that these guys here had turned down other "high power" positions to be the new dean of the UT medical school, to guys who had helped the YMCA become more family centered in tough communities in simple examples where people who had been randomly thrown together had suddenly joined to become a singular team the next season (though they would lose every single game definitely found one big definition of winning). The anecdotes would continue as they shared pictures big and large of how costs mattered at the macro scale (talking about projects that costs more money than I can imagine) to little things about why hospital gowns could change from design (there are medical procedures where your backside is irrelevant but for some reason the gowns are still one size fits all) to letting people pick out colors (raising a little girl, trust me this make a difference). The mission and respect they had with each other showed both in how they paid attention to each other when in agreement and how they learned in discussion and debate while in panel and table discussions.

From my perspective, there was an echo of a blog I wrote long ago (http://pickingupahitchhiker.blogspot.com/2011/01/split-check.html) about how a restaurant should be created where everyone got separate bills from the waiter, janitor, cook etc with undecipherable explanations. A speaker shared that it was amusing that this conversation was even being had since there was no restaurant where they would try to have a customer centered experience. What was the norm in most industries had a long way to go in health care. But even he conceded that he wished he had been invited to a hypertension patient centered care forum since cancer was much more complicated.

My invitation came to  share because of some of the best and worst parts of the story were relevant. I've long said that the only thing I cared about when this all started was the medical stuff and the financial things. Luckily for me, Livestrong was there at the beginning and while the seeds they planted would not get appropriate nurture for me initially. While that would delay in coming to fruiting, some of the very things that do matter as a chronic patient matter would come to matte  a lot more to me like  how it affects family, emotions, caretakers.

I shared my story about how I "fired" my original set of doctors and picked new ones because those first set didn't seem to care that the first set of anti seizure medications made me feel so much less of my personality (what's the point of healing if you lose so much of who you are?). They were fired because they wanted me to stop running but it turned out it was maybe because they weren't athletes themselves (a mystery to me that there are doctors who don't work out). For me, this had started in the emergency room for me with a cancer that has no known dietary, genetic, lifestyle or environmental component but I am glad that I learned the lesson early on that despite my cancer being a random draw, my choice of doctors didn't have to be. 

Our was a panel discussion where the three women I shared the stage with where all out of my league. The moderator was a professor at the University of Texas, Dr. Barbara Jones (Unfortunately, I forgot to start a debate about whether Ph.D's or Md's were the real doctors). The two women on the panel were both CEO's of Rallyhood INC and the Texas 4000. My speaking and sitting point was in between them and I'm not sure I've ever been surrounded by that much brilliance. As Patti, a 5 year cancer survivor, shared her story of she she found out about her breast cancer on Halloween while dressed as batwoman and her husband as batmen, she talked about both the good and the bad and the ugly . She also shared some of the humorous tidbits that are somehow best understood by those of us who sit in machines and take in chemicals. Somehow it's in those moments where you realize that being a patient is the loneliest thing and somehow still where you most appreciate friends and family. But she shared what definitely has to be one of the best breast cancer tshirts out there: of course these are fake, my real ones tried to kill me. 

Jen Garza who chose to spend her birthday in this panel would talk about how she met the love of her life and married him late in the cancer process. She shared some of the most touching and ugliest moment (perhaps the ugliest moment I heard about was someone showing up with a bill in the middle of a rough treatment session). She talked with an affection that was soft and kind and showed love really does have a capacity to break down some serious walls and overcome some odds. She talked about how we cling to humanity like when Ruben would not take music during treatment since he didn't want music ruined. She walked around sharing how they would leave hospice care to be able to go to concerts and how she got a doctor who told them when they had 3 days at best (it would be only one) who was also at the symposium. It showed the doctor was ahead of his time then and now that the approach hadn't changed. 

We had a question and an answer time where I shared a bit of my story about the running parts I got right and the relationships ones I got wrong and I answered an awkward question about marriage about how I got to change my approach to relationships after cancer with some guidance. It was a candid painful answer to give of how long it took to realize that cancer was affecting a lot more than my left temporal lobe. 

Throughout our presentation and others, there were human moments. There's only so "professional" you can be when you're talking about things wrong in your blood and your anus and your breasts and your brain. There was a woman at the back catching the humanity in the back with drawings of the presentations. There was a photographer who not long after I met her gave me a hard time about the fact that I was the only one speaking who there were two posters of on the wall (she said, "don't worry any pictures I get of you, I'll try to make sure you have a double chin in them, she was much cuter than me so I should have been taking pictures of her). There were people sharing beating odds and still standing much longer than expected and others who described lost battles to cancer. The second day was a breakout where we were told to design centers and while in each center there were 3 different groups for a total of six (health care providers, hospital administrators, insurances etc), in both rooms only one group came out of each, showing a merging of minds, heart and effort. 

Out of all the presentations, the three of us were the only ones that received a standing ovation. You could say it was our creativity, or our honesty, or the ladies' charming good looks. But I think it was because the attendees where there where focused on that the best part of present and future care is patient centered. So if you come in with the mentality that the patients are human and thus the center, how could they not stand up and applaud? I attend enough medical appointments to know that the model there is not quite normal enough but the people in that room gave me hope that the change will be something they bulldoze to get to the right center. 






Friday, June 13, 2014

Picturing Home

There has been a definite pattern to the trips I've taken since waking up brain cancer... some have been blatant exception where racing is the reason but without exception, without exception, I have never gone and just taken a trip without making refreshing or making some meaningful human connections. On some of these, I've learned the old adage is true that strangers are just friends you haven't made yet. Some of the people I've met through the Spartan were good to see because are charming and cute and a great part of the recent present and indefinite future. There were 3 friends who had come from Austin with me who had finished their Spartan beast. But it may tell you something that the place I've been to the most since getting cancer is California, the last place that had been a "permanent home," a place I'd given 5 years of my life to for a degree and an internship.

Because Kiana was spending the first couple of weeks of summer for an extended visit with her mom, I stayed almost a week made it up north to wine country (if you want the most amusing theory as to why I have cancer, while I was in college me and some friends stole a bunch of grapes my freshmen year of college, tried to ferment them, having made a deal that we each had to drink a shot. The internet was not what it is now and lets just say our 6 week method of fermenting wines was the worst thing I've ever drank, and I've taken some gross meds and done spartans where I ended up with river water and mud in my mouth. As I put that confession in a public I remember that stealing grapes in wine country is a crime and really hoping there's a statute of limitations from it having happened in 1998). I had done a similar trip shortly before the surgery http://pickingupahitchhiker.blogspot.com/2011/02/californication.html and had 2 or 3 meals in the area where I'd said, hey I'm going to be here, can you make it and friends and college professors had shown up. In those, I'd taken the classic move that we do now of a big group picture of everyone smiling ;). This time I took a slightly different (and until now secret) goal. I took those pictures with me from the north Cali trip and did nothing except put them in my phone. I had reached out to every single one of those persons trying to make some time with them one on one in California. It was finals week at the college and I was there midweek so I knew that getting too much time was less than realistic but still I dreamed.
There would be some moments where I was staying where I was reminded that supposedly close only counts in horseshoes and grenades, a game I would play with two friends while there, having one on one, or one with family meals (the adage is wrong, close counts so much more, so much more in  relationships but just pick good people to have relationships since you don't want them throwing horseshoes or grenades at you if you get into a good fight. Luckily, I don't have to worry about if anyone around me is good people since only good people could ever put up with me) And so I went to Pacific Union College and got a parking permit and started walking to the three buildings where I'd taken what felt like 90 percent of my classes as I graduated with a BS in Psychology, a BA in Theology suma cum laude with honors. And there college professors I would sit in their office. Some of them had seen the media stuff so I couldn't resist but tell the joke that they had lecture me for hours, given me far more homework and projects than I thought myself capable of. And now what I became known for was putting one foot in front of the other with a little girl... boy had they been a waste of time and money ;). But the dream had come true that while we couldn't help but discuss some of this stuff, these were conversations where there was the beauty that I'd just driven up to see them for the same reason I hope I'll always do for the people I love and appreciate, not because I was having a medical appointment in a few days but just because. Oddly enough there were no pictures this time and it felt more like the normal college conversation you'd have with friends where you just crash into each other talk, say hello, say goodbye. We'd trade stories about kids, politics, cooking and retirement and well let's just say that even the guy who lives as publicly as I do knows that if you don't keep what's personal personal, then it's not personal. 

Did I get to see every friend and professor in those pictures? No, the universe is not that kind to anyone but I hit a higher percentage than the odds are that I have of beating cancer and while I'd hit my fastest spartan beast a few days before, making sure to make more time of these guys was the greater experience.

But even the guy with memory problems got one more beautiful moment that I'll definitely remember. There was a woman who long before she'd met me had lent her place (http://clubcrudup.com/) to raise money for brain cancer research. She has done it three times for Austin and one time for the Duke race (I'll be raising money for the Brain power5k so be getting your wallet ready). I had won it the first time she had done it by being the lead fundraiser for the Brainpower 5k and she was beyond insistent that I come and bring Kiana which I did over two years ago. It was the first post cancer vacation really after dealing with the messes of then and oddly enough it was a trip I'd take and wake up in an ambulance two days later so it was a little slice of heaven in the middle of some messes, a reprieve and a breath of fresh air. Let's just say it was a special enough meal to where I definitely took a picture with an angel the universe had finally allowed me to meet. 

I don't know how the universe has allowed me to travel so much since winning Gusher but I'm grateful for it. But there was something very cool that made this California trip one of my favorites. This was the first time I'd rented a car in years and my friends left a day before I did but they gave me a hard time about how I kept walking to the passenger side most time (the two running friends that came are among those who had given me the most rides). While it tells you something about my brain that I finally get to rent a car and I use it to drive the most crooked street in the world with Lombard street in San Francisco, the last place I'd park it was at a trailhead. I'd walk up in late spring wearing a jacket to catch a view of the Golden Gate Bridge I never had taken in. And then as I got in the car, looking back at the bridge and the vacation knowing I was speaking at a Livestrong Conference the next day, and running a 5k that night and then off to a track meet the day after that, and then spending father's it was just an emotionally touching moment. Because I was both sad and happy to come and go because this trip felt as I got on the plane that I was both leaving and coming home.