After my last MRI back in December, I was given a new computer for Christmas which resulted in some interesting mistakes. But a guy who makes memory mistakes keeps a pretty accurate calendar to not miss being where he's supposed to be... for most things I set up a reminder of 30 minutes before but by the nature of my life some things take a few days preparation for travel etc. I don't know if it was the fact that I didn't know the way to put in calendar things correctly, the relief of the MRI going well, or just not paying attention. However just because the computer was given to me that day it would be the first thing I'd put in the calendar program and this morning I woke up that my next MRI is 30 days from today (the warning has been changed to minutes since then). I did not want that reminder this far out but I'm here trying to absorb it. I try to remind myself about that there was time the MRI's were a month apart and then 2 months apart and now they are where they will remain until as long as things are stable, 6 months apart.
I try to be a planner so in simple frankness my MRI schedule revolves around one thing which will be no surprise to anyone who knows me. The MRI's are always around the end of the semester in case there is something growing or something bad then I can enjoy the Christmas/Summer vacation with Kiana and if it's necessary for her to change schools it'll be a more "convenient/smoother transitional" time from her to having to change from the house she's lived in since birth and the only school she's ever attended. While some have called that planning sentiment cautiously noble on moments of more awareness or honesty, I have to acknowledge to me and well this blog that it may just be trying to have some say in the parts of my life that are uncontrollable. I've been commended for finding doctors which enabled my running and exercise habits despite other medical restrictions (scuba diving, soccer, being on a roof)... it's a delicate dance to me which parts of my life they and I are in charge of, people who I've literally placed my life in their hands and how we manage that trust. The two executors of my will have power of attorney over my entire life so that they don't have to defer to any doctor but rather to knowing me and doing what I would want (though many disagree with my approach but it's deferred to friends since waking up in ambulances reminds you that the technicians and doctors who end up working on you may be people who you have no say in and couldn't pick their faces out of a crowd literally not far down the road). There have been four cancer deaths in my life in the last 4 weeks with the one mentioned in the last blog the one that's messed with me the most in my entire life. I see the things people say and post and worry; one of them even triggered me to update the Facebook settings that apparently now will let you decide what happens with your page when you die (mine will do the same thing as the rest of me; it will cease to exist). It shows perhaps how good of a friend I have in that one of those executors when he sees me struggling with all this sincerely asks how I'm doing and then sarcastically uses my humor coping mechanism and says look if you do this too fast before we're like 80 years old, I'm not setting anything up for Kiana, I'm just going to Vegas.
Still, like birthdays, anniversaries, school years, months etc, the passing of time in the ways we've tried to define it gives us some measuring sticks so I let my mind wonder during today's about things that have changed since that last MRI... the last time for the first time ever I went somewhere I usually run at top of a hill and just took a city in while breathing at a regular speed with a cute girl who while nothing else happened in a place where lots of couples apparently do other things, she turned out to be a hugger at just the right time. That moment has sunk in and I've used that thought to go on walks with other people in places I'd previously only run including other cancer survivors... learning to appreciate places and people of different speeds at places I had associated only with training before.
I found about all this through an ambulance ride followed by imaging... some people find out things getting worse from no sensation but only through imaging... I could tell it more politely but that's really shitty. Since before the brain surgery I'd had a plan that I didn't want to drag out death; that if I didn't have responsibilities and promises to keep I would have just gone to the Grand Canyon and climbed in and out having seizures till I died. The Grand Canyon's been mentioned multiples times both in here and actual articles about me and the answer to why it's there is because while I'm a guy who loves company... to go die alone is a way that I hope will make it easier on other people and frankly for myself. One person who I was visiting in hospice once yelled at me that I didn't warn her enough about how miserable this was and that I would probably like it since I sign up for things that causes pain... Another person dealing with hospice more quietly said that they finally understood my Grand Canyon idea but didn't have any way to get to anything like that. A girl who is usually a better communicator and writer than I'll ever be was reprimanding me pretty strongly into what I've built it up. It made me reflect that I really had made a place into a monster of my own making; I'll let you decide whether or not it was better communication when she responded with, "it's your fucked up death fantasy." She apologized for that but I'm not sure an apology was due... It was one of my new year's resolution to go there in 2014 and I didn't go and I think about going this year to face my fears, perhaps even making it the first time I take a trip entirely on my own. Maybe breaking the association the fantasy would be to have some fantastic french kissing there or a fabulous race...
May is brain tumor awareness month... I'm never quite sure why we have so many faux days like siblings day and this awareness month but if it gets people to smile at some of the cheesy ones and do something positive for the other ones... that's not much of a price to pay. We kicked of the Brainpower5k registration with a marathon relay all by brain tumor survivors... Shocked I was that I got the longest leg out of anyone :). But anyone who knows me know I didn't do it alone and Kiana did it with me riding her bicycle. It was on a crowded trail and so we had to maneuver and go a little slower so I actually had run 10 miles before since they don't let me get out of shape. When someone found that out that I had done that, gone home showered and was now back to do 4 more, they said "man, you have an illness." I couldn't resist apologizing with "Yeah that's why I'm here." The race director whose always been an older sister to me (I mean younger if she's reading this) wanted to talk to me about how I finally need to get a girlfriend still since it's her and the race committee's decision that I will step up my game like George Clooney did propose at the finish where we have a blown up brain every year. This year will be the first time I don't have a chance at winning it by the way since we're doing a fundraiser where I start behind all the runners and see how many I pass and are hoping people will donate anywhere from 1 cent to any amount for as many runners as I pass... if I and the race have a good day it should fall somewhere above 1,000 people. I hope Kiana will be running it to but it won't be next to me for the first time but maybe I'll have a girlfriend who can keep up with her by then in many ways. I'm sure Kiana will be fine with either.
But with the calendar reminder, it made me look at other things around then. Besides the MRI results coming in the last day of school and before Kiana goes to visit with her mother for the first 2 weeks of summer vacation, my next trip is to Washington DC. It'll actually be the first time I fly anywhere this year not for a race but I'll be joining many other good voices in One Voice Against Cancer. We're only there for a day and I've never done any government lobbying but no one should assume that me going is like when Mr. Smith went to Washington. I'm flying there the day after MRI results and there are no parliamentary rules or procedure that will accurately predict whether I'd be more or less effective depending on if the results are stable or less than so.
I have multiple races this month, currently 4 spartans and perhaps a relay leg of a triathlon so the body is going to be hurting but I just keep believing, hoping, dreaming that if I keep moving that when I have to sit in that magnetic machine that was so lifeless and dormant that they built a room around it that I'm still ahead of it. If there's a way to have no fear, I haven't entirely learned it. But there will people from the Spartan world, my family, running, the triathlon world, the ultimate frisbee world all there during one of those races and I think it's awesome and I hope it's one of many good ways to continue to relationships and say thank you for it. I've done races next to exactly a hand full of people and I'm a hispanic male who struggles with sharing emotions but I hope I made it clear that's a way I say I love you.When I attend church and they have baptisms they talk about people who faith not having fear but studies confuse me since Christians tend to stay on life support than any other religious/non religious group. No one should judge the church I attend in by me (which is why I'm not a member) but their grace and humanity continues to help me believe in both.
There are moments where the beautify of Kiana catching that just fascinate me... A butterfly landed on her and just kept landing on her. On her hand, on her shirt, on her hair... it just flittered and flirted with her and while I tried many times I was actually only able to get one decent picture of it with the butterfly on her hand.... Kiana was enthralled and enthusiastic and I couldn't help but smile and think (internally), I hope that catching beauty like this is always the only way my daughter gives life the middle finger.
This blog and certainly this entry have never served any grand purpose other than to remember the moments that mattered and try to make sense of them. It is not as clean or as effective of a therapy as running (or as seeing a therapist for that matter) but it helps when accident calendar reminders pop up 30 days before they should. This was certainly a stream of consciousness writing where we discussed a lot of f words, friendship, faith, fiancee, fantasies, finally, feelings, fingers but I am a cheesy guy and now the Star Wars previews are coming out and it's May so let's just go with that F is for me wishing anyone who reads this a good day and saying "May the 4th be with you."