Friday, May 22, 2015

Clouds be rolled back

To me life is magical, mystical, mysterious, wonderful. The simple act of getting up in the morning is the start of wonder as you try to make what dreams and fantasies life has let you have another chance at rising to them is a marvelous privilege.

This is the way I try to focus as MRI's get closer... I know people want to me to go just by how I feel but I felt fine moments before seizures everytime and it was MRI's that gave us a clue. Many cancer patients feel fine before imaging and the simple truth there are some things that some times feelings are not the indicators of truth. 

So to quell the nervousness... I try to focus on the positive. I've never had this rainy of a year in my almost 10 years of Austin and my lawn is in better shape so I capture a picture of my little girl and realize that the grass couldn't be any greener on any side of any fence. And she sits there and creates lions and giraffes and owls and monkeys out of toilet paper rolls and paper towel dispensers. I never had much of an artistic side (an elementary teacher once held up one of my assignments as an example of what not to do) but I sit here, trying to learn and absorb a girl who captures life better than any picture I've ever taken. She watches butterflies and snails with a care and wonder that I hope she never loses and that I dream, I hope I've contributed to in some way. 

And I realize that the things some of my family originally thought were crazy like races, they are now doing on their own and sometimes on the same course as me. All of the cousins who had done the previous weekend of Spartans came back and did it again the second weekend and improved their time and failure rate (myself included). And I went back and finished with all of them this time taking less time to find them on the course. Others are talking about doing races on their own again or joining me again. I don't know who to be more proud of among them, Cefy who did it all on his own long before he realized I did it and did it with an injury. Sammy who has been weight lifting all his life and is now signing up for 5k's and spartans which push him harder and he's moderating his diet and workout techniques to correspond, or Omar who was much smarter than me. It took me over 3 decades to realize that, yes some races you should do on your own but  the way you make some races special is to do it next to someone you love and in his son's first spartan they were a joint force that no obstacle would be enough for. I usually do the elite heat where we play for money and winner and all obstacles have to be done by themselves (sometimes figured out by yourself cause when you get there, there's no one else to watch in order to learn how it's done). And I'm competitive and I like it and realize that leaders in any field sometimes have to go a bit lonely to be innovators. They are extraordinary and should be commended as such but those of us who are just ordinary kids are glad to have some extra moments with each other.

And to head straight from the race to see my dad for his 70th birthday. It's not often that the three brothers are together but I was glad to have us there for a man who has been a force of nature for us, certainly for me or perhaps that would be better phrased as a man who has felt so natural to be part of the same family. He is not my biological father if we're arguing about genes but legally and more important at the heart of the matter, he is my dad. And like me, he grew up without a whole lot or too many birthday parties in Mexico and we had some very good serious conversations about many things including what he did with me, which was come into my life at a young age and then have a won with my mother which never have I perceived a difference in how much he loved and cared for each of us. But the man who gave me the Leon name we certainly had a good time cheering him hitting a Leon piƱata. It's not often I head to west Texas but I went straight from the finish line to his party for a several hour drive thankful for a lifetime of support as well as him having joined me for his first 3 5k's at 69 years of age. Appropriately enough, the next time we're celebrating a birthday will be the only time I'll likely celebrate one in my 30's at my brother's house
in portland where once again we do a spartan, first time a race falls on my birthday. Pinatas, burpees, whatever way we want to swing at catching a few more years. I mean seeing him turn 70 and hugging my grandpa who was 84 that weekend and remembering my great grandfather who made it into his 90's that we should definitely question the idea that only the good die young. Here's hoping I live to an old age because if I die young so that I can discredit that idea that way rather than the not so good dying young (I'm still young right?!?). 

Still as I rode home and had my iPhone shuffling through the many hundreds (thousands) of songs rather than a genre or a playlist, I took those moments to look back at that obviously since my wife left in the middle of cancer that there were some relationships I had not taken care of appropriately but also that I am closer now to many of my family members than I was before cancer. I don't know whether it's a mistake or a reveal when jobs, circumstances, cancer disrupt your relationships or a tell but I'm thankful for the ones that obviously moved the right way. A couple of people had shared some of their health issues so I looked back to my previous MRI were somehow life was kind enough to where right before those nervous moments someone came up to me unexpectedly and said "I'm a hugger" and hugged me right before the meeting with the machine and maybe the hug had enough strength to get me through two MRI's, guess we'll find out soon. But the song that got put on repeat a few times was the old hymn that came on, "It is well with my soul." I couldn't help but focus on the lined comparing life to weather. The previous race in Boston was cold, and windy and rainy; I thought of it like an ice bath and figured it had to be good for my joints. The Spartan races in Burnettt due to the rain were muddier than usual but it was warmer than the east coast so I figured the mud bath was good for my skin. But as I listened to an old hymn that my mom sang and hummed so much I took in the glorious weather and realized that no matter what had happened and no matter what had come... that well some part of my faith had become sight because it really all was well with my soul.

And I arrived home exactly as I had the previous time from west Texas to an Austin Runner's club run, a club that as of yesterday I am officially the president of. Home is where the heart is and leaving from races with cousins, to see my brothers and parents and grandparents and returning to the club I run with, well if home is where the heart is, seems like I was at home the entire time. I came home to work on logistics and I've actually been dealing with some medical billing issues from a couple of years ago that were incredibly frustrating but I went out and ran stairs to remind myself that if you do an intense enough workout, even if temporarily, at the top of those stairs you've put your problems beneath you. 

So I go to parties where we fight brain cancer with a race as we kick off the Brainpower 5k. And I sit through questions that I didn't expect where a pastor wanted to ask some questions so he could share it in his sermon this Sunday... And as I get ready for my first honest 5k racing by myself (the ones with Kiana were more fun so far this year) with Voices Against Brain Cancer in New Jersey followed up being an advocate in DC for One Voice Against Cancer... Both more important on a massive scale but on a personal scale hopefully preceded by a stable MRI, a happy ending to Kiana's 2nd grade, and someone to hug that puts in perspective. 

So the only thing that will roll back like a scroll is the medical room changing, I don't know what that MRI will put into sight but I have some faith that whatever my lot, I'll be greatful to say, it is well, it is well with my soul.

Wednesday, May 13, 2015

Quiescent Orientation

I was seeing my internal medicine doctor last week on 5 de Mayo for a 6 month check up and to my disappointment they had neither chips and salsa nor margarita... It started with checking my weight and pulse as it always done... not sure how reflective it was but I went literally there from hill repeats and it turned out I had lost weight (170 lbs of pure muscle baby, yeah right )but my heart rate was the highest they'd ever measured it at, 61. From an appointment in March where it was 42 to 61 was explained by coming straight from a workout.

It would not be long before the nurse and the doctors were checking my internals. They're both great beautiful brilliant woman. Still two women talking about what's in my blood while this was informative not exactly my fantasy of two women and what my blood is doing. They threw out counts and various things, some of which I understood and some of which I just accepted that even if nothing was wrong with my brain I likely would have never understood. The doctor though kept using a word about how quiescent my tumor was... she used it enough times to where I tried to subtly google what it meant but couldn't figure out how to spell it so I finally asked. It means dormant and/or inactive and she said that she honestly believed that how active I've stayed plus taking onthe variety of activities that I've taken on is keeping my tumor quiescent because other healthy cells are the ones using the energy's body to regenerate. That was obviously a theory and she mused about how being part of group statistics was probably not going to be too helpful (I am unique just like everyone else) because of how different I live life than so many other cancer patients but that she'd be intrigued to have me as case study. We talked about Boston and the upcoming Spartans. The appointment ended with two surprises both of them being pleasant. The first was that the internal appointments were going to become annual instead of biannual as long as things stay steady or improving really. All this time in this battle against cancer, I've been playing to win and lately I've started to believe I think I just might. The other was that like my neuro oncologist she was also leaving her practice but also taking me with her as one of the patients she was taking. I try to take it as a compliment that they take me with them and hope that it's not like a train wreck where they just can't take their eyes off the mess....

Still... I went from there a little bit more pumped about the Spartan race weekend. I hadn't done a race since Boston and hadn't done the Spartan since before that. Now I was going to be doing two races in one weekend, the Super in the Elite heat where I went back and cheered friends into the finish line. The one that I was more excited with in case it's not obvious that my favorite races are the ones with company was Sunday where it was the shorter race with my cousins. Now it wasn't like my brother's first Spartan where I did it side by side with him. This was a cousin who could bench press more in junior high than I can now. There was a cousin who was always more athletic than me and to me this was going to settle a generational argument about who was the best athlete even if all the girls think they're taller, darker and more handsome. 

Sammy actually came in to stay at my house the night before. Spartan right now has a campaign going of #whyIrace (cause things are cooler with hashtags) but he's a guy whose not really been doing aerobic stuff till recently running 5k's for the first time and this Spartan sprint would be the longest and hardest event he'd ever done. I asked him why he had started doing this and he told me it was a way to get over a girl and then we traded girl stories, mostly he wanted to hear about the girl kissed in Boston and turns out he had figured out who it was from a previous conversation so I was impressed with all aspects. But it made me realize why we're family because we'd figured out a way to calm the demons of our heads, our hearts of our emotions with healthy things when they were most disturbing.

I love marathons and always will but spartans have a special appeal to me in that I've done them in different places but they tweak the obstacles, make them different, put in new ones, make them harder. On Saturday during the super I had missed 3 (resulting in a 90 burpee penalty) but they were all ones I'd never seen before so that was comforting at some level (I was far more excited about the new ones that I'd gotten on the first try). It was rainy and muddy so I'd hit some rocks seriously in the worst possible way I've ever gotten shin splints... still I'd had enough left to jump over a fire into water to finish with conviction. 

Sunday I was not far from the finish when I saw my mother not far with the last 5 obstacles left. I had already missed the one I'd missed the day before and the other two were at the end. And internally I was like oh come on, I gotta try to do better, mom's cheering now on mother's day (this is the place where I should get judged for my mom coming to me on mother's day and not the other way around... do I get any credit that I stopped and gave her a muddy hug and kiss in the middle?). Still, somehow with actually far more ease than the day before I failed exactly zero of the obstacles she was watching which was true in the last Spartan she cheered so turns out loving your mom and feeling it back on the course is very good for me. 

Then I went back to finish with my cousin, my cousin Omar was doing it with a friend of his and was showing his athleticism. Then I went back to finish with Sammy who had less than a mile left but had started to struggle... Still there wasn't a single obstacle where he even seemed to suggest anything other than finding some way to get it done never taking the option of walking around it or doing burpees without at least trying. Perhaps the hardest thing to watch was when he took a serious slide down a muddy rope wall... he didn't say anything and I had climbed it and looked down at where he had slid and said... "well at least you've  wiped off the mud for the second climb..." His mom and my mom cheered their heart out as he did it once again all the way to the top successfully. He'd miss the same two obstacles I'd missed the first day and even as he sat there cramping we sat there and did burpees. It occurred to me that we should face the finish line which was a frisbee throw away so that even as we went down, every time we came up we got to have a glimpse at the goal he'd reach for the first time, a Spartan finish line. He got across the line and while I'm not usually much of a hugger, I couldn't resist embracing him with the heart and conviction he'd faced the course with. 

Less than 48 hours later both of the cousins since it's in Austin back to back weekend had signed up one more time. I think this time I'll remember to hug them at the beginning of the course too. Omar is even bringing his son and they're going to do the course side by side and my cousin Cefy is coming from West Texas so 4 cousins from four cities. I guess for some people racing is an individual sport but for me, it's something I do with people I love. 

Kiana and I had dinner tonight with a friend whose dad died of brain cancer. She told me stories about him and their childhood memories. About how he had outlived the prognosis and made it to 15 years. She told me about the cool activities they shared and some of the ones he did on his own. Like me, he had lost spatial orientation due to it all (I usually run with friends or a phone but my latest GPS watch Vivo Smart has a built in feature which points you back to where you started). I'm known for getting lost which has happened in races and workouts and I take the jokes about it good natured. That and the fact that I've been mostly a runner makes the spartans particularly tough but also particularly rewarding.  She shared about her dad had always stayed active but there were certain things in water events like surfing that the spatial orientation had made for some amusing and nerve wracking moments. e had clearly oriented life for her into active healthy things and the heavy negative things he'd kept quiescent by doing so far longer than expected.  The way she spoke about her dad with such affection and warmth that if I do half that good a job of parenting I'll be fortunate.

People have questioned why I don't focus more or just strict running or strict spartans or strict anything... they don't realize that like today where I went on a trail run and we stopped in the middle of it to drink water from a natural spring or to jump off a swing that landed in the lake. Those things reminds you the running is the excuse, loving life that's the reason. I had no clue where we were and Joe and Ty helped me stay on track but never once did I have to look to my watch or anywhere but my heart for the right orientation. And those 8 miles were more fun than any training run in a while with company. 

So I don't know why the tumor cells or at the things that haunt me I try to remember that I want to feed the right cells and the right parts of my body which are the parts that interact and love others and not just like cancer are all about self replicating... or like CS Lewis said

"To love at all is to be vulnerable. Love anything and your heart will be wrung and possibly broken. If you want to make sure of keeping it intact you must give it to no one, not even an animal. Wrap it carefully round with hobbies and little luxuries; avoid all entanglements. Lock it up safe in the casket or coffin of your selfishness. But in that casket, safe, dark, motionless, airless, it will change. It will not be broken; it will become unbreakable, impenetrable, irredeemable. To love is to be vulnerable.”

But I think in being vulnerable in new activities and in life and in love, it's made the ghosts of me quiescent and kept my head, my health and my heart to stay correctly orientated.

Monday, May 4, 2015

F is for...

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."