Wednesday, April 30, 2014

Growth and transitions 1 and 2

Spring has arrived and it has started warming up. I don't know that Texas has traditional transitional seasons like some places do during spring and fall. But as I was mowing my lawn and watering my trees the other day, I noticed the growth in the tree that I planted shortly after the second time was visible on the stem itself. And there was something very cool about being reminded that growth can be a very very positive thing. (So tree growth, good. Growth in cancer bad. Kiana arguing with me because of wanting to still wear a dress that's gotten too short because of her growing... somewhere in the middle).

Still, apparently here in Austin, this is the end of marathon season and the beginning of triathlon season... so I have been training for my first triathlon... the rookie triathlon now just a few days away. Though I've done 9 marathons, six spartans, and 3 century rides, why have I never done a triathlon? Because I hadn't swam laps or strokes continuously in 14 years... and I've never swam in open water other than recreationally (I've done it twice, yesterday and the day before and it turns out water and I are better in a closed relationship).

But to the river and to the lake where I went to practice, I drove my car which carried my bike (it got a good nudge from a friend of "you know now that you're allowed to drive, you don't have to bring the bike right?"). But it was because I wanted to have some concept of how to exchange between the two. I don't know much about triathlons (thus why I'm doing the rookie) but it turns out that while your total time is what matters they do give you splits. In running, we have positive and negative splits (were you speeding up or slowing down the further you got along the race). In triathlons I was recently told you get 5 different times. The first is how long it takes you to do the swim, the 3rd is how long the ride takes you and the 5th is how long the run takes you. However 2nd and 4th stages, time splits are transition times... how long it takes you to get done with one event (take off goggles, put on shoes, sunglasses, helmet, bike for transition one/ take off sunglasses, helmet, get off the bike, put on running shoes, put on a running bib for transition 2. I can't promise you how my first triathlon is going to go... If it's anything like my first marathon or my first spartan, it will kick my ass.

However, on advice of Julian who has done ironmans and other triathlon distances, he told me to practice transitioning. So yesterday for about half an hour, I practiced running to the bucket Kiana had made for my transition and working on it all. It's harder than it seems... A non triathlon friend kind of rolled his eyes and said it's a few seconds difference at most. I think both are correct in that it can be a small and little deal. I suppose where it could be the biggest deal is that if you do something wrong during transition, it can disqualify you all together (there are rules about when your helmet has to be strapped in etc) or you may have to stop in the middle of when you're supposed to be racing to transition some more instead of giving it all you've got.

The counselor I've sat with for going on three years now recently had a conversation with me about how it's time to start talking about transitioning out of counseling... I don't think that either of us believe it's because I've got it all together (I dont!) but it's because the things he helped me with where ones were well I didn't practice transitioning. Perhaps, it was worse than that... perhaps if this triathlon is any analogy I was trying to bring the bike in the lake or run during the bike portion... not getting some things anywhere right and slowing myself way the hell down. But it's somehow both incredibly comforting and scary that he's open to that possibility.

But he (and I?) believe that even if it was less than clean... most of the time we were moving forward and thus the definition of progress. I went from employed but not running guy going through post cancer divorce to unemployed passionate single dad with pr's and wins in pretty much every distance... is that progress? Either way, we've been meeting less frequently and somehow, if the last blog is any indication, it went from a story I told in tears from stress and worry to friends and a counselor to one I share with other people about holding hands and going on.

So we'll call that transition 1 and my counselor and I think/hope it's complete. Transition 2 now is being back in my car... the medical appointments at least for now being the exception most months rather than the rules and perhaps the one that generates the most conversation... finally being open to having a girlfriend. The problem with having said that George Clooney's your idol in regards to relationship is that he threw me a curveball this week. He got engaged apparently after dating a girl for six months (you know you've made too many George Clooney jokes when he gets engaged multiple people feel the need to tell you). He took a couple of decades to do it but I don't have that kind of time. So to answer a question/joke/comment, I've been asked a couple of times... sure, if I find the right person, I'm happy to dive in after six months with someone and dream of spending the rest of our lives together in the old fashioned way, one foot in front of the other with someone  you love...

Were any of the Geore Clooney girls in that category? Well... for a guy who shares too much of his life...let's just say there was a definite pattern to girls who will hang out with a guy who somehow tries to balance being a hopeless romantic and having a heart afraid of damage and commitment. They were all brilliant beautiful young urban professionals who I was the rebound guy from a bad last ending to a relationship. I think once they found their feet or once my next medical appointment was done and I remembered that I didn't want to impose this on anyone, one or both of us moved on. But while it's not 100%, I am friends with most of them and am happy when they find their next step (including ones that have already moved on to marriage and one with a child). (And here a brilliant person will point out that I didn't answer the question the paragraph started with).

Perhaps because enough time has passed, perhaps because in this second transition of life being more normal, perhaps because the right George Clooney girl left an impression deeper than my scars did, I really am grateful that my heart has relaxed enough to be open... Will that work out? Who knows but nothing ever does unless you're open to it and as I've said before, you do that basic principle towards relationships that you have to do with muscles and fitness, work on the ones you want to keep.

A friend who is recently on some similar psychotropic meds asked recently if that's what it's like to be me, swimming in your own head from drug side effects that mess with your sleep, how you feel etc. They are one of the people who has realized that I'm nauseous more often than I let on since if there's nothing I can do about it... what's the point of complaining all the time? They understood for the first time that while I love life, I will also be at some level relieved when there comes a point for it to end. But they also realized that waiting for relief is probably not nearly as good as going and seeking it and they went and got a workout in.

Still... we'll see how the triathlon goes, transitions and all. We'll see how life goes, transitions and all. But the medication we all need is love. That comes in many forms but it's questionable whether I've been shying away or running away from a certain type... but it's time to stop that in this second transition in spring. Or to quote Bette Midler:



It's the heart afraid of breaking
That never learns to dance.
It's the dream afraid of waking
That never takes the chance.
It's the one who won't be taken,
Who cannot seem to give,
And the soul afraid of dyin'
That never learns to live.

When the night has been too lonely
And the road has been too long,
And you think that love is only
For the lucky and the strong,
Just remember in the winter
Far beneath the bitter snows

Lies the seed that with the sun's love
In the spring becomes the rose.

Sunday, April 27, 2014

Holding Hands

Below is the conversation I got to have with the Livestrong leaders today (in video form) https://www.youtube.com/watch?v=YqRrVSGgLHc:

I don’t remember what it was like to be born… but it can’t be much different than the day being told I had cancer felt. A world that I lived in which felt relatively safe and quiet and it changed very very quickly with unfamiliar noises and lights. Something shocking comes into life, leaves you crying, confused and looking for a hand to hold… And when the birth process goes right, when it’s a good day, you find that hand quickly and hold on for dear life.


I was a kid who’d never called in sick to work in his entire career. I’d missed 5 days of school from kindergarten to college because of the chicken pox. Then while in the middle of a work birthday lunch  I woke up in an ambulance where medical staff and my coworkers were standing over me telling me I’d had a grand mal seizure and we were headed to the emergency room… (I’ve apologized a few times for ruining her birthday).

CAT scan, MRI, this doctor, that doctor, admission… it was all just a blur but enough to where the very first thing when I was told I had something going on my brain, possibly a tumor, I ripped the IV out, put on my jacket and started walking out. Coincidentally, the ambulance guy was walking in as I walked out and stated “well you look better than the last time I saw you”. I was walking through the parking lot when my friend Troy who was showing up was walking in and said “what are you doing?,” and I said I was leaving, he redirected me back in when he found out my checking out was less than valid.

This was just a couple of months after I turned 30… and I couldn’t help but think “man life goes down hill fast after you turn 30.” There was no holiday attached to that weekend but because it started on a Friday afternoon the biopsy wouldn’t be till Monday morning… and I learned a whole new definition to “long weekend.” I am a guy who jokes around a lot so when the doctor when he showed me on the MRI that it was possibly  a brain tumor, I told him to rub some dirt in it. He looked at me, looked back at the screen, looked back at me, looked back at the screen and said, “and if you look here…”  The last thing I’d say to him before he would do the biopsy was “I’m going to give you a piece of my mind.” My friends following my queue of dealing with stress with humor would take some good shots about how this was “rust from lack of use,” “that I’d proved them all wrong, I did have a brain” and perhaps my favorite in response to the fact that I’d been moaning about being officially old since I was 30, someone saying, “only the good die young, you’re going to live forever.” Whether the hospital staff was impressed or depressed by my anxiety coming from sitting in a hospital room, they gave me permission to run on the hospital grounds with a friend the night before the biopsy. This time the IV was still in there and the simple truth is I snuck off and got an 8 mile run in because I had to get out there before the biopsy the next morning.

 The biopsy that was supposed to take a couple of days took almost 3 weeks… and I’d say the suspense was killing me but if something was killing me, it probably wasn’t the suspense.  The jokes kept coming as I read the pamphlet from the neurosurgeon about functions of the left temporal lobe… it could affect memory and language skills and a few people requested that we put in a mute button. It could affect sexuality and so I thought it was a good incentive for people of both genders to be excited… but be warned I’m not any good at being big spoon.

But the simple truth is that while those jokes made me smile then and make me smile now and they were probably a better coping mechanism than hitting the bottle would have been… they hid the fact I was denial. An old friend Nicole who is a doctor was coming to check out Austin coincidentally around the time this all started. I had a driving restriction so she took me to the appointment where they’d remove the biopsy staples… and where we’d do follow up seizure scans.  There I would hear that I had diffuse astrocytoma, a rare brain cancer that  has no known dietary, lifestyle, genetic or environmental components. As I made one more joke about how this prove I  a total headcase she pointed out something that most people had missed since they were laughing at the jokes, “she said, you don’t have a positive attitude, you have a casual attitude.”

By the kindness of the universe, the very next day, someone from my running group, Andy Stewart, a friend of this funny looking guy named Doug Ulman told me about Livestrong. I would make the call while he was there. There would be some questions, some suggestions and I was both grateful and annoyed with the navigator on the phone. They were talking about psychosocial things and emotional things and family and caretakers and blah blah blah. Boy were these guys missing the obvious, how had they missed the memo that the only thing that mattered about cancer was dealing with the medical stuff and the bills?

This was shortly before Thanksgiving but the day before the holiday, something arrived that I will always be grateful for, the Livestrong guide book. I would spend a lot of that holiday weekend reading that book for tips, for clues and obviously for the cure to cancer because that had to be in there somewhere. But somewhere out of all the things that were in there, the simple, elegant and beautiful livestrong mantra shouted at me, unity is strength, knowledge is power and attitude is everything. Perhaps because it was an echo of the casual/positive attitude remark… perhaps because it was finally time to wake up and realize oh yeah I have fucking brain cancer and we’ve gotta figure out a way to kick it’s ass.

I was already training for the Livestrong marathon and while I had originally asked for a refund, I said no, I’m running this thing. With guidance from the navigation center and friends, every single one of my doctors changed. This had started in the ER and it was just random draw and while to each his own, I wanted a team that was about action and the calls started and I would find a neuropsychologist who realized I cared just as much about preserving brain function as I did about the ability to keep breathing, I found an oncologist, a neurologist, a physical therapist, a neuro surgeon who were all athletes, all runners who knew that continuing to train was probably  just as good for my brain, my heart, my soul as anything they could possibly do. One of the assistants finally relaxed enough to joke, “well maybe what’s least stable about your brain is how much you’re running.” There was times they had to make me take a few days off running because of the risks like after my wada test where they put parts of my brain to sleep to see how risky the surgery might be. They went in through my groin wound it all the way up to my brain, proving what we’ve always known, that men’s groins are connected to their brains, it takes less than seconds for them to communicate and we know which one puts the other one to sleep. I had to stop running for a few days and when I got back they wanted me running next to someone and not so hard so I ran next to a football guy we call Big from the workouts and I told him that if I suddenly collapsed, he’d have to call 911 and put pressure on my groin. With a smile on his face, he said you know if to save your life, I have to put pressure on your groin, you’re probably going to die right?


I put off the brain cancer surgery for a few weeks after all the tests were done and ran the Livestrong marathon in Boston Qualifying time, still my fastest one cause I’ve ever done if they are going to slice your brain open you don’t slack off and it helped that there were many good friends including one of my doctors cheering along the course. And while if life ended on athletic victories alone, we could say that’s a happy story… let’s just say that I got some things horribly wrong. The person I was married to at the time, the Livestrong navigation center had suggested that I do some things, most of which I did not do. They suggested I go to counseling, that Kiana attend counseling since obviously my scar is fairly visible, that I talk to someone else who had been thorough the same diagnosis. Stacey Conley of the Austin marathon thought I should join the Livestrong survivor team which I blew off very quickly because this was all before the cancer surgery so how could anyone call me a survivor?

The surgery occurred as successfully as possible. But then my wife left… I fell apart… And somehow the navigator called as a check up and I signed up for Livestrong’s cancer and relationships class, cancer and parenting class, the survivor class. There would be simple things I’d missed like “don’t tell your child that cancer is a booboo” since they use that word for everyday things. The survival class was all men so I could still pretend to be manly while being a little more forthright about the emotions that come with it all. And perhaps, a basic truth of life that I’d somehow managed to miss until the cancer and relationship class, you have to work on the relationships you want to keep.

And that attitude I learned from Livestrong is my everything. I thought the mantra that attitude is everything was wishful thinking, a silly mantra of comfort in denial of reality. But 3 and a half years into this journey, I’m not sure anything in my life is more true. Because none of us like the idea of dying but there have been people who I’ve met through Livestrong who die from cancer with a better attitude than many people live with from day to day. There have been times where I woke up in an ambulance again, where the shocks were apparent and I was again just looking for a hand to hold. There have been times I was over eager and over read a report where I thought maybe cancer was gone. But it wasn’t and I was disappointed but friends from Livestrong reminded me that hey if it’s stable, the days above ground are great ones.  Statistically speaking, I’m not likely to make 40. But as my old math teacher used to say, statistics are like bikinis, what they reveal is interesting but what they conceal is vital. Statistics can’t show attitude and the friends I’ve made through Livestrong are even better than great bikinis. 


 So while I’m a long way from where I should be, I am much much further than where I could have been without the people Livestrong is made of. They pointed me in the right directions towards great doctors. But somewhere near as important they pointed me to daily cures. A friend from Livestrong Chris taught me how to ride a bicycle to prepare for the Livestrong ride… most of my time with cancer I haven’t been allowed to drive because of seizures and this bike became my car. I’ve done 3 Livestrong rides since then, each of them taking the 100 mile option since besides being a marathoner, I also wanted to be a centurion. Just as importantly, not long after I learned to ride, I taught my daughter how to do it and we still do it together.

And while keeping it age appropriate, my daughter has been with me for parts of my medical appointments from MRI’s to neuro oncological ones… she attended the counseling Livestrong pointed me to, Wonders and Worries, we even danced at their ball. And this summer she will be attending Camp Kesem.

And I’d say following in her father’s foot steps, except we did it side by side, this year Kiana did her first 5k with Team Livestrong. I’ve raised money for my marathons and centuries even doing things like shave my legs for these centuries as an incentive to distract from how bad I look with such fitted clothes.  And somehow in the Paramount 5k, in just over 36 minutes, she raised over a $1000 for our team which is more than I’ve raised for most of my marathons and centuries so thanks for making me look bad kid. 

I’ve continued to meet people through Livestrong like Steve who even from far away gives me some good parenting guidance while dealing with the disease, like Mary who they connected me through Imerman Angels and who I’m still in contact with because she was one of the few people who also shared the same diagnosis, like Matt who with lung cancer still works out with all his heart, people like Sean who ran the marathon course on his own since colon cancer treatment would not allow him to do it on the official race day. That’s how he dealt with as he called it the bug up his ass. I could tell you about Linda who says I should propose with a livestrong ring… I can keep going on and on and on but the simple truth is that it is the diversity of that unity and the depth of it that makes it so powerful, so strong.  The fundraising done here allows the work. Just as if not more importantly, what you do, who you are, creates both information and inspiration to deal with cancer in the here and the now. 

 This is why I’ve done many races since then including the Boston Marathon with team Livestrong. Even when I’m not officially on it, I think of it while doing things like winning a marathon behind a stroller in Beaumont Texas. This year I returned and won the half and jumped for joy. I got the privilege of being part of the Spartan Charity challenge where my team took home the top prize of $2500 to the charity of my choice and it came to Livestrong.  But whether it’s pushing the system with medical treatment or on the road, whether it’s dealing with the messes of obstacle races or the ones that you get from cancer, there is one thing that has been a constant.

I started by saying that getting cancer was like being born where you cry and need a hand to hold. But as we get older, sometimes the hand holding is just to cross the street, or to comfort you in a moment of weakness, a squeeze just to share a special moment, or to be held up together in a moment of triumph. But the constant has been that since I put it on, and it is still the original one, there is a band that sits on my wrist, a Livestrong band. And the powerful knowledge that has come from that reminder, the attitude that comes from uniting that strength, will always be there every time I get privilege of having my hand held. The first hand I held was the one that had given me birth. The band on my wrist represents what I hope you will all walk out here doing… holding hands while living strong. 


Tuesday, April 22, 2014

Back To Yesterday and the Answer to the Question of Life

Lewis Carrol wrote “I can't go back to yesterday - because I was a different person then.” People keep asking what it’s like to be back to driving after a couple of years away… and well… I don’t have any great witty answers. I’ve still tried to bike or walk anything I would have before; I still don’t assume that it will hold since it came and left before. I filled up gas for the first time in my own car in years and I’ll tell you that there’s one part of driving where cycling is better for your lungs and your wallet.

Still, it’s very different than the first time I started driving when I was a teenager. When I was a teenager I was very worried about trying to get a girl in the back seat… now I’m worried about a little girl in the back seat. Back then I pushed every speed limits and broke some (we once found an old west Texas road where we put the pedal to the medal and I hit a speed I should probably not publish in a public blog)… now I’m driving and actually haven’t broken the speed limit once… I’ve mostly avoided highways when possible, some out of nervousness of how fast people drive on there! And some because my car which had sat in the garage is a stick shift and it would be embarrassing to have it stall on the freeway in Austin’s stop and go traffic. While I got lots of rides when necessary, two weeks into it, no adult has ridden in the car yet which I wish there’d been one cause the first time I had to parallel park I nailed it on the first on the try…

Still, the first thing that got put in the trunk wasn’t groceries or anything like that. Appropriately enough it was the stroller… where we went to do the hill repeats with the Ship of Fools. And somehow for the first time ever since I got this stroller and since I won that marathon, it got a flat. I had done the first set of hill repeats behind a stroller, after the flat, the next set of them besides Kiana  (who takes shorter recovery times than me and most of the group), and the last set by myself while a shipmate hung out with Kiana. I gotta say that all three occurred in one made it my favorite hill workout ever. 

And our first road trip was back to the land where I grew up in west Texas. I got to see several generations of family… and me and both my brothers were together for the first time in the same place since my brain surgery at Duke. There were comments about people’s life and weight shifting. There were some evident generational changes with my grandparents having had 12 kids (my mom the oldest with somehow girl, boy, girl boy alternating all the way down), my mom having 3 sons, me having a cute daughter who somehow was playing with a puppy a good chunk of the time. Even while we acknowledged that there were times we didn’t talk much then or now (my older brother is 7 years older and my younger one is 8 years younger), we also acknowledged it was good to see each other because sometimes even in the silences people who share some of life, share it better than other people who didn’t share it do talking.

While we were there, I saw an announcement for a 5k and an Easter egg hunt. Kiana and I were up earlier than most of the family (most of the Reyes and I live on opposite ends of the day and meet in the middle). I had no stroller, no ipod and Kiana said she didn’t want to get her dress dirty and for the first time in years… I ran a race without music or a stroller while Kiana hung out and went crazy with the iphone pictures as we did a double loop around and back. It was the first cross country race I’d ran since 2002, so in a dozen years and while there were three of us that took off together, in the end I took the win. And yet somehow when they let Kiana out for the Easter egg hunt and when the Easter bunny was dancing, I couldn’t really keep up with either of them…

The stroller still hasn’t been fixed so there’s been a short break from running but I used it as a conversation piece with Kiana. We talked about whether she’s getting too big for the stroller (we had this conversation once before and she said no but we can always get a bigger stroller). But this time as I told her how much I liked our team work in the stroller races, she said, “You know I was on your team before we ever got a stroller?” And somehow some dust must have come into my kitchen at the time cause my eyes got super watery…


But still for the first time in forever, I have zero road races on the calendar. There’s my first triathlon soon, and the Livestrong ride in October and some Spartans between now and then (let me be clear those are all things I knew nothing about before cancer… and I still keep saying that if you sign up for new things, things you’re ignorant about, things that are messy, it somehow manages to make the uninvited, messy, new things in your life a little easier to deal with).

But sitting with family and in the town I spent childhood in made me think about the guy I was and thought I would be.  (Just for your amusement here’s what the kid looked like twenty years ago) That guy is not achievable any more between medical, financial, and emotional fears, hopes, scars, and realities which are always a question mark that the pills I wake up to and fall asleep with me remind me will never really be entirely of the past.

Still, I always try to get bib #8 for races I sign up for in advance. But this was one of those races that since I signed up day off, you just got the next bib, which this time is 42. Now if you were never as nerdy as me… you may not realize that is the Answer to the Ultimate Question of Life, The Universe, and Everything. That’s from the Hitchhiker’s Guide to The Galaxy where they program a computer which takes millions of  years to figure out that the Answer to the ultimate question of life, the universe and everything is 42… When the humans point out that doesn’t mean anything, the computer states that we’ve just been asking the wrong question.

I attend church but even there I bother some of my brothers because heaven can’t be the meaning of life
since while the idea of heaven ensures eternity having avoid what so many of us fear, death, it still extends life. And I appreciate the grace of the universe and friends, with one of my favorite songs being from Larnelle Harris being both about races and grace:

Were it not for grace I can tell you where I'd be, wondering down some pointless road to nowhere with my salvation up to me, and I know how that would go, the battles I would face, forever running but losing the race were it not for grace.

And I wonder the place that we point at so grandly and call heaven because the streets are paved with gold may well be reminding us that what we value so highly is not worth more than pavement in a perfect world…

There are days and today is one of them where I struggle with if I ever get back to any semblance of the life I once knew (I think the answer is most likely no) but so far 2014 has had no gigantic surprises pleasant or unpleasant so I’ll take a more predictable life for a bit (that doesn’t mean there hasn’t been pleasant or unpleasant things, just none that floored me literally or figuratively). Still… even if I can’t get back or if all I get is a win with 42… I am glad that I still get to experience, life, the universe and everything. 

Tuesday, April 15, 2014

Hope-The Thing With Feathers

Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all,- Dickinson


Emily Dickinson was an odd poetic girl... an extreme introvert who overwhelmed by her emotions writing far too many poems about immortality and death. The few poems she published in her lifetime were heavily edited to fit the tastes of her times better... But at the end of the day, she lived a lot of life of fear because she struggled with illness most of her life, one school year only able to attend 11 weeks due to it. She was fortunate enough to come from a family with the finances to make some of that possible...

I am not great poet, not even a good writer but I admire the fact that even in her illnesses, in her fear of death and in her overwhelmed approach by hers and those around her, Ms. Dickinson often wrote of hope that perched in the soul. Still, she'd be overwhelmed by the death of friends like one at age 25 who died of a brain congestion. So even though she wrote precious truths about hope... she also acknowledged the heavier ones like death. I talk/think about the Grand Canyon experience here and there but maybe if the universe is kind enough, I'll get braver then that and keep going without stopping and echo Ms. Dickinson's statement "because I could not stop for death, it kindly stopped for me." Still, I wonder if her approach of being mostly secluded (she asked her sister that upon her death she destroy her poems) as opposed to my approach of being too wide open... which one shows the more damaged heart or  brain. 

But those of us who struggle with common or uncommon illnesses at any age and certainly at a young one, if we are at all human, we have fear but if we are to have a chance, we must also have hope. I have said and done stupid things with the fear of this cancer especially around the medical appointments... I have enough faith in the human heart that even when the brain is screwed up believe that we have capacity to make good choices. Still, with awareness that the human condition is at best deeply flawed, when I do make mistakes of what I say and do, all I can do is acknowledge them, apologize and not try to pretend to be a victim of my own fears or disease. Whatever I've learned through these last few years, I hope to keep. We had a question an answer period during the speech where someone asked how this has changed my perspective... and I talked about how after I won the half marathon this year, I called Kiana to tell her about it and she told me about the butterflies she'd seen and boy was that a great perspective!

So even when I was cleared to drive, it took me a few days to do so. But the first place I drove myself to... was a running party. And the second place I drove to was a kid's birthday party for Kiana. So driving to parties with friends shows our priorities. It didn't take me long to realize what the real function of cars was and took mine and Kiana's bike to the velloway (a 3.1 mile track for bikes) to ride it together for the first time. She fell once because instead of keeping her eyes on a new path she wanted to check out the flowers, we had to walk the bikes up a steep hill in there, it rained on us a bit. Still when it was all over, I took her back to the place where she'd fallen and in a safer fashion checked out the flowers. And it is my hope that no matter what else either of us do for the rest of our lives... we catch moments like smelling flowers.


As with anyone's life, there are changes. The saint of a friend who has lived with me for a while has decided to move on closer to work and a real adult life instead of one with a single dad whose house shuts down quietly. I get worried about this with my medical issues but as I try to find a solution, I'm greatful it's been a long long time since I've woken up in an ambulance and am comforted by the fact that Kiana's getting older. As I wake up to the fact that I haven't had a girlfriend since high school and am open to it for the first time, I wonder if I have any clue how to actually date someone. Livestrong has invited me to speak in a couple of weeks to many of their volunteers (I'm working on that speech so if you have any great tips let me know). I still haven't put gas in my car but looking at the prices as I drive around makes me realize that maybe my reduced medical payments will be replaced with gasoline bills. I have zero road races that I'm signed up for in the future but my first triathlon in a couple of weeks and doing the spartan workouts of the day trying to prepare for the first of those since September of last year... I realize I'm so financially behind that I sat down with a job recruiter but it makes me nervous because, well I sat through multiple court hearings where someone thought I shouldn't be raising my daughter and part of my sales pitch was the fact that I was a full time dad and that there was a back up adult there. Whether the person who asked for the custody changes, the judge or myself will see it differently if all of a sudden I'm a working person at a new job and the other home option is an established relationship with two adults... So with each of these changes or possibilities of changes, there are hopes and fears and no guarantees of which one will win out.


Still, while holding on to hopes of beating this cancer, I keep betting on the odds knowing good and well that there are people who I met who in one set of appointments was fine and at the next one had a growth and had a few weeks or months left. But I also remember what my statistics teacher used to say... that statistics are like bikins, what they reveal is interesting but what they conceal is vital... and I am glad to have had experiences and people in my life who are better than great bikinis.

And because of that I keep holding onto hope in many areas.  Because if there's anything I learned from the cowardly approach to dating I've taken since getting left in the middle of cancer, it's that there is more there than I once believed was possible, probable or wanted. Whether or not I'll find someone to match... well nobody gets that guaranteed. There's been jokes from friends about what my pick up line should be from "I've won a marathon and can break a five minute mile so I'm good for all night or a quickie" to "I won a half marathon but with you I'd go all the way." I've always said my  pick up line was "so you want to date a single unemployed dad with cancer who can't drive?"... yeah no wonder I'm single ;). But at least the last line is out now. But if I manage to find someone whose ready to be my girlfriend well... I imagine if it has any chance of lasting it will be because they can sign up for a mess while holding hands and holding hope.

Because I am going to see my brothers this weekend for Easter and all 3 of us will be together for the first time since Duke... Because the crowd from Beaumont was here for a race and I got to have dinner with them...

Because Kiana had a school field trip yesterday where she was fascinated by caves... because she watched a terra forming tree this morning... Because the sun still rose today... in all of those things and many more great ones that have along the way... they still perch in my soul and sing without words and I hope they never stop at all.

Friday, April 11, 2014

Drive

Three and a half years I’ve been dealing with cancer… and I like to think that the days that I’ve been missing my drive are rare. They have occurred but they are the exception. But a harsh truth is that the vast majority of the time that one of the symptoms, side effects and how I found out I had cancer was from seizures… which mean that the vast majority of the days while I’ve had cancer, I have not been able to drive behind the wheel of a car.

Even though I know I don’t handle pre medical appointment days at my emotional personal best… I try to be aware of it. While there has been progress on how I handle it (it probably helps there are less these days and as I’ve shared with my doctors, the less I see them, the more I like them). Those nights are usually filled with bad dreams, nightmares of appointments and various past issues from waking up in an ambulance or the life changes that have come with it. When I was in Minnesota during the Q&A, someone asked what the most stressful point was… and I responded with one of the two, the fact that both times I’ve woken up in an ambulance it was not too long after a good run. The first one was literally the day after I was in the lead of a training run for the first time since college. The second was a few days after I’d taken home a trophy for the cancer survivor division while I was in the lead in the middle of a 10 mile training run. Both times I felt fine a few minutes later and both times we were then having to try to figure out why, do tests, do blood work etc. Dealing with various cancer patients, many of us struggle with the fact that we’re fighting a disease that for way too many of us comes with no “tangible” symptoms of warning. For me, it’s literally knocked me out cold. The second, which also knocked me cold, was my marriage ending shortly after… Still, answering that in a crowd full of strangers some of which were just kids didn’t seem appropriate.

Still, the day of the medical stuff, where I try to face it as well as I can… I was below average at my parenting approach. There was nothing horrible but that morning Kiana was getting redirected a lot in a snapping fashion about getting up, getting ready, finishing breakfast. I am sad to admit that it wasn’t until my roommate pointed it out that I noticed it and sat Kiana on my lap and with a hug and a kiss and no excuses, I simply said “Look, I’m sorry I’ve been rushing you too much. I have to see my doctors today but that doesn’t make me  being rude okay.” The guilt would sit there through the morning adding to the anxiety… but while cancer may have be the case, I take full responsibility for how I handle it, trying to remember an adage from a high school assembly that emotions are horrible masters but we have to figure out how to make them good servants.

Then it was finally time to head out. We all have different ways of handling our demons… but I decided to take a slightly circuitous route on my bike the way to the hospital where I’d see the restaurant I first collapsed at, the hospital, the place I used to work, the MRI location. I couldn’t settle the emotions of whether the right move was to give them a middle finger or a nod of thanks of sorts… neither occurred.
Still, there were various reasons for the appointment with the neuro oncologist. The primary ones were of course medical but in April my doctor also has to fill out a summary to send to Kiana’s mother for the custody arrangement so that was part of the discussion. Since the increase of medication in December the seizures have held, he talked to me about some law change in legislature regarding seizures and while I didn’t catch all the details, I thought the appointment was going to end with him telling me I could drive in May and he said I could start driving now. Even as I had hoped that he’d allow me to do so in May, the way I would say it to anyone I loved hearing that I was in shock but I am not even sure if it was a good or bad one. There are zero appointments that I assume will go well but as I was getting ready for this one, I saw my bow tie hanging in the closet I realized this is the only one of my doctors I don’t have a picture with. His signature is that he wears bow ties because being Dr. Valiant, he is brave enough to realize that bow ties are cool. I grabbed mine and said, okay, if the appointment goes well we’re taking a picture together… you can decide whether we look more like Chippendales or Donald duck.

After the medical stuff and after the picture was taken, we took those human moments where I shared with him the Minnesota speech (https://www.facebook.com/notes/iram-j-leon/minnesota-speech/10153993565360554) and Minnesota Article (http://www.postbulletin.com/sports/localsports/runner-confronts-toughest-obstacle-brain-cancer/article_57668089-d130-5f9a-bd5c-fcb16e6472e7.html ). He told me about a new brain tumor support group the hospital is starting and invited me to it’s opening event (I’ll be there). He asked about my next race and I told him the next one was my first triathlon and turns out as I knew, we’re both runners and we’re both horrible at swimming.

Still, when I left there, the shock factor hadn’t set in and I didn’t have anywhere to be for a couple of hours so I got on the bike and just rode and rode and rode. I rode past the physical therapist I was seeing a few years back, the old doctor’s offices that I had to go to, and in the only place I actually said thank you to was past the hospital where Kiana was born. Then I stopped and the next conversation was with my neuropsychologist… where we discussed what I will always call cheating and what he will always call compensating. I talked about some of the games I do which didn’t seem to be translating into real life… he said that the issues I was describing were still consistent with temporal lobe and hippocampal damage. He shared the story about rats who get lost and how they tried to show them new things in a maze and thought they had actually gave them back a sense of direction but then realized they were just using the light shadows… (this is similar to what I do where when I get lost, I listen for the sound of one of the major highways in town as a way to reorient). We talked about the listening to books thing and the adding distractions etc etc etc but the grand conclusion was that while nothing  had gotten worse, nothing had gotten better and it likely would never do so though I always try to find the glimmers of hope because the conversation ended with (if I hear of any new research on this, I’ll pass it on). In perhaps a completely hypocritical stance (when friends tell me that nothing’s improved on their cancer/other medical issues), I try to remind them to be grateful that at least things are stable. But I work harder on the mental issues than anything else… so it was disappointing.

Still, sad about one thing in shock about another, but ultimately grateful for it all, I went to my track workout and did 4 mile repeats. Then in what can really only be called an extended apology Kiana got to stay up 15 minutes later than usual to play uno and go fish.

 And the next day, on my first day cleared to drive, I did not do so. Part of that is I’m not 16 anymore and didn’t feel the urgency to tear up the road the first day I got it. Part of that was insurance, batteries etc had to get into place. But most of it was just  nervousness that maybe driving stick was harder than I remember. But because I do have a triathlon in 3 and half weeks, for the first time in my life, I swam, biked and ran all in one day (this is going to be a tough event).

It is my hope that I will continue to drive as little as possible but that I’ll keep the drive that was partly a reaction to that big medical restriction. But it may well say something, that the first place I drove to was a running party at a bar though I did not drink (where I still paralleled park successfully on the first try, but still almost got a ticket for not placing something correctly). And call it being cautious or cowardly, but I'm going to mostly stick to parking lots and streets rather than highways for a bit. And when Kiana found out I could drive, she didn't care that much when I said we were still going to walk most places like we've gotten used to... I think the first place she'll get driven to

The question is often asked, what drives you? And for me for most of the last 3.5 years, in cars, it’s literally been someone else most of the time. The joke someone made that my pick up line of “can you pick me up” is no longer valid and someone reminded me of something I said that if all went well I’d start thinking about getting a girlfriend (I didn’t get one that day nor do I currently have one but I am more open to the idea and there will be no one I ever call a George Clooney girl again).


But the most important thing was that the day after the medical appointment, Kiana and I played pick up sticks, go fish, uno, and did art. After she’d beat me enough times, she eventually said that was fun but could she read extra.  She talked about her next race, the school carnival, these onions she’s picking at school. And as we laughed with less stress and no need to apologize… even if they ever take the right to drive away again, I hope we both keep the drive about life going.




Tuesday, April 8, 2014

No Fool's Errand

When I was first invited a few months ago to speak at the Fools Five Road Race in Lewiston Minnesota, I thought it would be a privilege and an opportunity to be part of an 8k that raised money against cancer but even so I had no idea how great of an event I’d signed up for.

I may have arrived in the middle of a snow storm, dropping 50 degrees from what Austin had been. There I saw more snow in one day than the rest of my life combined but that was the way only way you could argue there wasn’t enough warmth there. The events started with an auction or three. Balancing cancer for most of us is no small act but these guys showed a balance and dexterity, with a silent auction, a local live auction, and another live auction. While the official gain would be achieved in a few hours, the amount and quality of items that would reach into the 10’s of thousands of dollars had obviously been the result of work of a few months. While that alone is impressive, somewhere the organizers had these three separate auctions to openly let everyone know that one of those three auctions, the local live one would be raising money for helping people in the area going through medical with the various bills that cancer racks up much too fast. The lion’s share would go to cancer research but realistically some of those funds will help only future patients so the organizing committee shifted in dealing with both the here and now and the yet to come. Having been to events that had each of those components, it was the first time that had both in one weekend. The symmetry and harmony they did that with may have been less emotional that the rivalry of bids that came in for Vikings seats, homemade cookies, pounds of meat, tools and perhaps would have been my favorite if I’d gotten to try one, pastries literally made in the back kitchen that created a bidding war where pastry puffs went for over $300 a dozen. While it was clear both their hearts and the pastries that were that good… I'll not know which was better but I’m glad I got to experience the former (though I would have taken experiencing both).  Still, if that wasn’t enough, there was something about that sense of community demonstrated by the laughing, the jostling and perhaps the fact that it took me quite an effort to find even a handful of people on their cell phone in a room of a few hundred people because they were interacting with each other the good old fashioned way. 


When race day arrived, the weather had shifted to where it was both warm but windier. In an attempt to be witty, the draft of my speech said “Wise men say only fools rush in but it’s a blast to be here at fool’s five.” It turned out to literally be a serious draft with some incredibly strong wind. The race was an out and back where somehow it literally felt like the turn around you were coming up hill and into the wind. Before the race, I’d heard stories about how one year it was so windy  that one woman talked about how she had just run still for a bit and another one about how somehow had gotten blown into the ditch. Before running it, I assumed those were exaggerations now I’m not so sure. Still… giving it what I had… I managed to come in 4th place out of nearly 3100 (that felt appropriate since the race started on April fools, the logo has a four toed foot on it to see who would notice). While there are people who will focus on the 4th place, I was amazed that in a town of 1600 people, there were nearly twice as many participants in the race. I’ve done many races but I can’t think of any that got close to the population of the town that hosted it much less nearly doubled it! There were people on that course running in wheelchairs.  Perhaps because it was an out and back or because of the nature of the community that was the most strollers I’d ever seen.  There were walkers/runners who chose to express their loss of family members through being part of the event. And it was impressive to watch the enthusiasm that community that community expressed when the female winner came in, a 10 year old girl doing it in 31 minutes and change. Let me rephrase that, it was a 10 year old girl winning an 8k in 31 minutes and change! 

The good times of this year at the race, at the auctions just show a great history. The race had started back in 1979 where with about 200 runners they had raised about $2000 on April fools. Here, three decades later they are closer to hitting the 2 million dollar mark and there are quite a few people who have never missed a year. It’s a race with a $10 entry fee and between all of the events and festivities, in 2014 they had raised over $90 thousand dollars.

They’ve had a Minnesota Viking out there to speak before, a winner of the London marathon… and trying to follow up the stage with those would have been intimidating enough but just knowing what this community had done for so long, I wondered if I was necessary at all. I talked about that it was a race like this, the brain power 5k, the first race after brain surgery that helped me realize it wasn’t time to hang up the cleats. With that sentiment, I wore the shirt from that race. Still I shared my story, my pictures, my jokes… and when it was all done, there were a few people in the audience crying because it had been so bad and they all stood up clapping in relief when I was done. Afterwards, it was a question and an answer time but somehow no one asked for my number… But while I’ve gotten to hand out finisher’s medals,  those don’t come in an 8k but they were kind enough to let me place the medals of people who had placed including my friend Kate who herself had won the girls division  of the brain power 5k.


The guy with memory problems will not forget many things about this weekend. Realizing I was surrounded by angels, I tried to fit in by making one in the snow. There was a tour of an Amish home and community, a house sitting on a frozen lake. Still, perhaps my favorite memory will be during the question and answer time… when someone asked when I started running. Just as they said that a small child ran across the gym floor in front of me… and I said “right then, just like everyone else here.There are some things you may have to grow up and grow out of them but moving’s not one of them.” Their logo this year was your life, your journey, every step counts. That little girl was getting it down and the community had gotten it right for almost 4 decades. I’m glad we got to share some of those steps. Great hosts, great people, and a great event. If a town that size with 1600 people have established that committed people fighting cancer is not a fool's errand.

Tuesday, April 1, 2014

Step by Step

The beauty of my life is something I think about often. It living one foot in front of the other with someone you love. The Head for the Cure’s logo paralleled that well with their idea that they are defeating brain cancer step by step so I was glad when Kiana decided to take the step of trying another 5k with them.
Kiana started her second 5k day ready and full of energy. She seemed very eager to get going at the Head for the Cure, jumping around some of the military bases exercise machines, saying hello to people. The night before we’d kept the tradition of laying out our outfit and bib’s the day before and I threw in a little surprise for her. The little girl whose fascinated by butterflies got a small medal one pinned to her bib where her dad dared to dreamed it would help her take flight for 5000 kilometers.

She wanted to start out near where most of our friends were. Most of them are fast runners near the front and while I talked her into backing up a little we didn’t back up enough. The apple didn’t fall far from the tree and she repeated the rookie mistake her dad usually does, for the first 1/3 to ½ mile we were going way too fast… I reached out to hold her hand oddly enough to get her to slow down at first. But by mile one we were on pace…

She started commenting on the blue bonnets, the planes, and the people we knew and for a few seconds here and there singing… I took that as a good sign that she wasn’t over exerting herself if she had the wind for that. Still when we were enough laps (the way she measures distance) to where we were half way through, she declared that she wanted to get a faster one than before and if I could help. She held hands with me some of the time and there were definitely points where it was questionable who was dragging who to maintain pace. I offered to get her water at the waterstop but Ms. Independent said she’d get it on her own and impressively managed to drink while not changing her step, something she’d never done before.

This course had more downhill and uphill than her previous 5k and it was my privilege to hear her share thoughts about the people who passed us and who we passed on the course. There was a guy in a wheelchair going up a hill and she said, “I think that’s harder than you pushing me in a stroller.”
When there were “2 laps to go,” she asked “where’s the finish line?” the same thought I seem to say when I’m near the end of races that end on a curve.  But once she saw it she bolted it in and beat her previous 5k time by over 40 seconds. How she moved like that on legs that small was impressive.


We checked in with teammates, most of which were people who had run the race but others who had volunteered for it and others who had even come in from out of town to cheer Kiana on and even grandma who had “cheered” by walking her own 5k a few hundred miles away in honor of her granddaughter. 4 teammates had won their age group. One was proud of herself because she had thought about walking at several points but never had. She also has brain cancer and we’ve talked about how her stubbornness to keep going like that has served her well.

Kiana would run and play with the bluebonnets and military displays. There would be people who would share their journey with me. Many, if not most, of the people who were sharing were new to this brain cancer experience either personally or by connection. I remember the loneliness when I found this out of how hard it was to have no one to talk to about it that “understood.” They shared stories of their medical treatment or of someone passing, one as recently as 8 days before from brain cancer. There’s no good way to deal with all this but my experience has certainly been that sharing some of it is better than doing it alone.  Because while I have lots of good friends who have been beside me every step of the way, there is something special about sharing it with those who “understand” because they have taken very similar steps ahead of you or know they are a few similar steps behind you.

The event would raise over 200K and have about 1700 participants. I had been part of a great time and volunteered in packet pick up. And then if those things weren’t enough, they would post the kids results  and Kiana would be ranked at the top of her age group, girls nine and under. As always  keeping in perspective, she was excited to get the medal but was also excited the wind was picking up and that she would get to fly her new kite that day.


There are steps next to Kiana, friends and family that seem to fly with the grace of butterflies. There have been others on this brain cancer journey where it feels like outside forces are pulling you till your strings end and you just enjoy the ride. Head for the Cure says that we are “defeating brain cancer step by step.” I don’t know how far a cure is but I think that 5k event on that day alone took several steps that showed we’re defeating brain cancer.