Thursday, July 31, 2014

Some Nights

I am a little while from my next trip and race, headed to the West Coast in a few minutes to fly to Portland to see my little brother David. We'll be filming once again for NBC sports for the Washington Spartan race. I still am amazed at the fact that cameras talk to me because of hanging out with my kid for a marathon (okay it helps that I won it). But Kiana will be doing the Spartan kids version and my little brother will be doing his first spartan and his first race in quite a while (I'll be doing the elite heat and then doing it again next to him, though I assure you we will do all the obstacles on our own and the running next to each other. My first spartan I had someone next to me and all they provided was mental help ( I hope to be the same for my brother. 

I've sat here and thought of some of the things to say for the interview. It's usually answering questions but I often get to say a couple of things at the end. But it won't be about cancer even though I think cancer sucks. (In fact I'm involved in two fundraisers for it right now and if you want to donate as a gift for my upcoming 34th birthday you'll be my  hero, one is for Livestrong and the other is for brain cancer research But the reason it sucks is because it gets in way of life. And I go to church and am trying to get a couple of friends to join. But even as my counselor and I are "breaking up" or as one rather cute girl felt the need to mention, we are consciously uncoupling with only one more session left the week of August 10th, I think cancer sucks for the same reason "sin" does. Because it gets in the way of life. And by life in case this blog hasn't been abundantly clear and redundant is those connections you make that somehow are so much better in person but that we've invented photos, blogs, twitter and facebook to try to replicate.

There are times I've been encouraged, critiqued, (if you're a communications expert feel free to insert your word here to correct the guy with aphasia) for not delivering a more potent anti cancer, or pro Jesus or pro health care thing, or more exercise things though I believe I've done that to a responsible agree with that fundraising and with the videos etc. But the biggest message of my life, what the guy with the bad memory hopes to remember forever, is that connection you get, in a good conversation in sharing moments with meaningful people. Sometimes it's not just about a race, it's over a snow cone or under stars or things that aren't much more sophisticated than when someone tickled you. Look I'm a guy who likes to race, go fast and often win but sometimes it's about learning to slow down with them as you cross some bridges in life because like people have slowed down to speed me up in races and vice versa... there's something unsurpassable.

I've been working on my playlist for the Spartan race (these are a little different than road races so I play it on shuffle since like life I don't know what's coming on the course; there's another great song on there as I question whether George Clooniness or the new path is the better way for me but maybe that one's best left on the table for a bit). Oddly enough a couple of the songs that made the "Guy with a stroller wins a marathon"  were from Fun but there was a song of theirs I had not paid attention to that is on this playlist. It's "Some Nights." As I get ready for this interview and prepare a speech for a marathon three weeks after

Some nights I stay up cashing in my bad luck
Some nights I call it a draw
Some nights I wish that my lips could build a castle
Some nights I wish they'd just fall off

But I still wake up, I still see your ghost
Oh, Lord, I'm still not sure what I stand for, oh
What do I stand for? What do I stand for?
Most nights I don't know anymore...

And trust me, I'm insecure/confused enough to wonder if when given literally chances to talk to strangers and share something  
if I'm delivering anywhere near the right message... Most nights I don't know. But when I get to hang out with my little girl or my little brother and his little boy. When I get to realize that this weekend, the three people who were there at the Boston marathon, the one I'd put off brain surgery to qualify for, and at medical appointments, my little brother, my daughter and my mother, that after this weekend, assuming it all goes well, that I will have done a race next to every person of some sort... then I dare to dream that will be some night I'll sleep with a little more rest from the exhaustion and a little more peace from the gratefulness. They all came out to Boston for me and I'll now have gotten to do a race with them in their hometown... so Bon Jovi maybe right, who says you can't go home. 

With next to no cultural sensitivity, when my little brother was born with his almond shaped eyes and we nicknamed him Chino. He embraced it and it would have to take someone really cool for me to ever get a tattoo again and maybe we'd get matching ones but maybe the right one would be the Chinese characters for faith hope and love. I know that the first person to write those said the greatest of those was love but they're all pretty great to me. 

So some nights... I wonder how all this happened... most nights I don't know. But I think the next few nights as I hang out with my brother and mother and spartans... faith, hope and love will remind me why and it'll know. So for the next few nights... yeah there's a race but this will be the longest trip I've taken since Boston with and for family. That'll make for some good days and nights. 

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 ... 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 (, 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.