Thursday, June 8, 2017

Russian Roulette

With a pending MRI on a recent run with a friend, someone asked if I got more confident or less confident with each MRI and potential results. In one of my less than eloquent answers perhaps because Russia has been so much in the news these days, I said it honestly feels like Russian roulette where the chances don't ever feel any better or any worse but at best you come out with another turn and at worst you're looking at death. I've only fired guns one weekend of my life and certainly never aimed one at myself so this isn't something I have much knowledge or experience with. 

I completely grant that was not one of my better choice of words but if there's anything I've ever shown in this approach to life and death it's that well I don't pull the trigger lightly. There were 3 events the weekend before. The first was the Atlas Ride where the Texas 400 did their first ride on their way to Alaska. Almost 70 college kids will go on 3 different routes form here to Anchorage on their bicycles... I did the 50 mile ride that day and while it was not officially a competition in anyway me and the two guys in the front when it got down to about 10 miles to go, one of them said it's always a race. I was the first to finish. But that wasn't anywhere near the main highlight of the day, I started the ride with two cancer survivors who mean a lot to me, Will Sweatnam and Mike Thompson, oddly enough Will was one of the guys who was there as I was learning basic things about a bicycle half a decade ago. Mike at the time was working in a bike shop and helped me maintain the bike I would use as my car when I wasn't allowed to drive. It may have been a point to point ride but it felt like some very good things were coming full circle my first time joining the Texas 4000 as they took on Atlas.

There were 25 and 70 mile options (the 25 one started two hours later) so after I got it done I headed back out and finished with my girlfriend. She looked good in the Livestrong gear of her own and while often when we have done trail races she has been doing the longer distance, twice or 3 times as long, it was nice to show I could last longer for a change. 

But we headed there for teamwork. We went to a trail race where arriving less than 30 minutes before the start of a running festival we would put together a team of the 4 by 5k relay. We had decided if we arrived on time we would put together a team and in worst case scenario we'd each run two legs. Let's just say we didn't just put together a team, we put together the winning one. It's the 4 relay we've placed in and the 3rd one we've won. It was a cool trophy and it resulted in a shelf now at the house for our joint medals and trophies. I hope that shelf keeps growing just like the ones with Kiana and I has kept growing. 

It was pouring rain at the trail and many people headed out before the 3rd race but well I wasn't one of those and took off for the 3rd race of the day. It was an evening 10k and well... I won it. When I originally got diagnosed with brain cancer I put off brain surgery to run a marathon and qualified for Boston. It seems I always race intensely before medical appointments... 2 years ago I did 4 races in 8 days and placed in none of them but enjoyed them all. Last year I did 3 races in 3 days and placed in two. This year I did 3 in 3 days and was in the lead of them all. Somewhere it may well be the subconscious but I want to know that if some trigger is being pulled that I had some say in how much conviction it got pulled with. There may be people who call that naive to think it's all just chance but I never quite forget that I have a brain cancer that has no known dietary, genetic lifestyle or environmental components. 

To pretend like I shook off the impending MRI would be a myth but I don't pause for it. We played a poker game the night before with some of the same people who had played in the hospital when this first started and a few new ones. As I prepared for it with stiff legs thinking that my exercise is habits is my way of fighting cancer I echoed the song that was playing the background 'luck ain't even lucky, gotta make your own breaks.' I'd end up taking home not the win from the poker game but more money than I had put in. I like that approach to poker but I hope it's the opposite in my life, that I put in more than I take out. Not quite sure how that works with the laws of the universe but that's my hope. 

Kiana and I are on a mission this summer to catch some things we've long neglected around our own home town. We found a tree house that I climbed up first and reminded Kiana that if she broke her legs she shouldn't come running to me. She got up and down from the tree faster than I did. I kept trying to find ways to stay busy till the moment of the MRI and then even busier between the results.

I've been to this MRI place for years (that's both a good and a bad thing I suppose). I have no idea what procedure was happening but from the moment I walked in and for a solid 10 minutes there were screams in the background, not muffled but just outraged screams from a child. They were those primal ones that you hear and you're not sure anyone can comfort because the procedures presumably necessary. It took plenty of focus to refill the documents I'm given every time as I just kept listening to those screams but when I to turn them in it was to a new front desk lady who was named of all things, Hope. That's what the MRI feels like, somewhere a balance of primal screams and Hope trying to be helpful through the process. 

There was actually something different about the machine this time. For the first time ever they said they could give me earphone to use in there as opposed to ear plugs. They asked me what radio station to put it on and I tried while we did the first set of imaging (the one without the contrast). But then I remembered during that first set and as I listened to my favorite radio station a piece of advice I'd been given when trying new drugs which was not to have some of your favorite foods because their taste might change for ever due to emotional associations and vomit associations. I'd listened to that then so I have no foods ruined for me. The contrast they inject with rare exception makes me throw up so as they came in I said thanks but no thanks and handed the earphones back since I didn't want any good songs associated with that machine or that vomiting feeling. That would result in me being in there for the first time without earphones... let's just say the machine is loud.
But the louder part is from when it was over Tuesday evening till results this morning. I tried appropriate and inappropriate distractions for the scanxiety as we call it. Did a track workout with heavy legs, a Marathon Kids Ambassador Training Day, a social run for Global Running Day. For the 3rd year in a row I've had an MRI between national cancer survivor day and global running day... I can't ever quite decide if it's appropriate or odd that I'm stuck between those two. 

But while it may feel like Russian Roulette and while there are suddenly arguments in the news and politics today about what things from Russia we should take, the one thing I hope to not be in life or social media or my approach to cancer is a Russian doll. I don't ever want to just be full of myself. Still as I perused through social media, there were 5 of us who were due for scans and or results within 24 hours of each other literally all doing scans in different cities and states. Three I've met through brain cancer events but one was a running friend. I reached out to them and was intrigued that we had all ended up on the same schedule. While none of them knew each other I wished them all well and the same in return. 

In complete honesty, my girlfriend has asked to come to the MRI all but insisted on it but I am just not there where I'm ready to let someone join me there. Perhaps it's damage, perhaps it's protecting others or even self protection. I mean I tried to kick my mom out of the hospital room before brain surgery... I appreciated the insistence and well a thought that went through my mind in that machine there's at least room in one area of my life for growth. 

When results were due, I took Kiana with me. She's stuck with me and my results for now and sat and listened as the doctor said everything was stable. The last time one of the measurements had gone up a millimeter. This time one went from 14.04 to 14.10 which was nothing to be worried about. 6
hundredths of a millimeter matters in very few areas of life including this one but I still noticed it. The doctor talked to me about recent races, about Kiana's races. I talked to him about how I needed a new primary care doctor due to the most recent appointments (she's great and so is her nurse but I've had so many ridiculous billing issues with Seton that I finally decided I'd rather not keep dealing with them. With the most recent billing problems it literally took hours of phone calls and 16 different people before we got it solved. I left on a voicemail and will put here in writing that I'd rather die than have this process play out every time I have to have an appointment. He gave me a referral.) I talked to him about how I'm serving help develop the new Livestrong Cancer center at the new medical school. We talked about my piss poor problem and we looked at my MRI different than I ever had before specifically how near the tumor was to my pituitary gland, something we've talked about before due to other side effects. 

The last several years worth of appointments have been on the 8th of something... so the next one is December 8th. If somehow the way you spin the barrel and hold things keeps consistently keeping you alive, I don't mess with the formula. But one way I did mess with the formula was usually I go to the Hope Outdoor Gallery before an appointment to 'just breathe.' Summer time is sleeping-in time so this time I went afterwards and for the first time ever either of us, both of us, spray painted. The first thing Kiana painted was a heart, something that somehow has in my view both stayed steady and kept growing for me. 

But the story may be that for me today but it doesn't end that cleanly. Because when I got home, I checked on everyone else. They almost all got stable or clean results. But Matt, a guy who I often refer to in speeches who I talk about in media interviews like the Spartan one, someone I met at my first brain cancer event. He's relearned to walk and talk and it was after that he did his first marathon. He's why I got mohawks and a little more comfortable both with being an advocate and living with the scars. He's the one I stole the joke from that if the brain cancer doesn't kill you the medical bills will. He's the one who always tell me to leave it all out there. He's been stable far longer than me but on his scan results today, there is now a new tumor at his skull base and will have to have another brain surgery next week and likely have do radiation and/or chemo not long after. As soon as I heard the news I offered condolences and he offered congratulations on my stable one. I said I wish I could trade him spots and he said he'd never let me do that with Kiana. 
I have another race tonight, the Moonlight Margarita Run 5k, a race that has honestly never gone that well in Texas heat but we present a check afterwards from the Austin Runner's Club. I have a Spartan on Saturday. I was going to take them a little less intensely than last weekend's races and it tells you something they are the last ones I presently have on the calendar till September. But I'll go out there and give it what I can with a little more conviction and a little more purpose. I'll see my family and friends at the Spartan. Kiana and Elaine will be home tonight. I'll hug them all with a little more conviction. 

The Russians have a saying that a bird is known by its flight. Matt texted me before either of us has results and said that he prayed for us to have clear results. The years and the symptoms and the struggles of brain cancer are something we've flown through or above, sometimes with mohawks to be a little more aerodynamic. I told him all I ever hope for is is to handle the results well no matter what they are. I think loving and living with conviction is something he shouts and I try to echo it and I think despite our different results that won't change and I really believe that for both of us that's handling it well. 

Friday, June 2, 2017

Even If

'They say it only takes a little faith to move a mountain
Well good thing A little faith is all I have, right now' -Mercy Me

Cancer survivors have little things that sometimes scare us... This fear of re-occurrence, or of growth of a disease whose symptoms are often not foreseeable or detectable by human norms still causes everyday things to be slight panic moments. I and others tell the bad ass stories of the people missing a lung or a leg who hike Everest or finish an Ironman. But there are ones that are somehow both sad and amusing, my freckled cancer friend who had skin cancer who always loved her freckles even as a child but now worries that one of them is changing shape. Summer is a time for long sleeves not extra freckles and she draws patterns on them somehow believing that if they line up properly like the right armstronomy then everything is normal and surely that one's not extra big right, it was always the north star? I have a young friend who decided walking was better than hard exercise because he wanted the bone cancer to be kept at bay but the soreness of muscles made him too nervous. There was the older lung cancer survivor friend who wondered if he should slow down since missing a lung because he thought making the shallow lungs work too hard was dangerous if he only had so much breath left. There are amusing stories like one breast cancer survivor who in her own words ask her husband far too often to feel on her breasts for less than erotic reasons and the colon survivor who acknowledges that he spends too much time wondering 'if anything new is up his ass and so he watches his shit closely.'

I have brain cancer so the truth is I don't pay attention to my body as much. In fact during Q&A during speeches a question I get often is if I've changed my diet because of the diagnosis and I acknowledge that I actually always ate relatively healthy for athletic reasons but now I have dessert more often since if odds are I'm not going to make 40, I'm going to enjoy all things chocolate till then.

But there are mental symptoms that make me wonder. There are times where I can't find a word, probably an everyday quality for all of us but then I remember that was one of the tests that went down in capacity after brain surgery near the language and memory center. It is a strange thing for a damaged brain to be wondering if its own damage is growing... There are memory moments where I forget someone's title that I've worked with for two years or say a different name by association in back to back moments on stage. I've got enough of a sense of humor where I play it often to everyone but there's a little sadness in me on those moments, something I try to comfort myself with the phrase that sad is happy for deep people.

When this all started, I had been having moments where I couldn't read for a few seconds, when I couldn't 'think'. It was only a few micro seconds with the suspicion now that they were micro seizures and the last thing before that grand mal seizure was that I couldn't read the menu at a birthday party. The thing that got me fired was making memory mistakes on the stand.

So lately I've been losing my wallet. It's not a new thing, I lose it once in a while as well as my keys. People have tried to comfort me about it by saying well Einstein was a genius but he couldn't ever remember little things like that. I never had neither his intellect nor his forgetfulness before brain surgery. But the last time I massively lost it was over 2 years ago 4 MRI's ago. That one as soon as I realized it was gone, I remember I had been at the Ladybird Johnson Wildflower Center where I had decided to jump over a river and had emptied my pockets in case I missed I didn't ruin my wallet or phone or electronic keys. I nailed the jump but forgot the wallet but would get it all back together a few hours later, in the middle of the night with some criminal trespassing where I got caught but got let off after I explained why I was back.

Since the last MRI in December I've lost it 4 times. Once was after a party where Kiana and Elaine helped me look for it and after hours and hours and hours of searching I finally remembered that we were playing darts in the garage and I was wearing running shorts that barely had pockets and I'd put it to the side; it was still there. There was another time where again after a few hours it came back up and in my constant use of humor as a coping mechanism I even had a facebook status about how me losing my wallet was good for my house because that's the cleanest it ever was (someone chimed in that it was always the last place you look because then you stopped looking). A couple of weeks ago, I lost it again and spent 3 days looking for it before finally cancelling my credit cards and debit cards. 10 minutes after I did that I remember we had an unusually cold day in May and went and found it in my jacket pocket in the closet. Once again, I used the coping mechanism and a Facebook Status about how I'd be very financially responsible for 5-7 business days.

Today I once again lost it and I knew the last place I had it was right outside of a liquor store I parked at. I was taking Kiana and one of her friends to a swimming hole that starts near the parking lot and realized I hadn't brought water so I was going to buy some but you  have to be 21 to enter and I wasn't leaving two little girls on their own period much less outside of a liquor store. That was the last place I remember having it and needing it. We would walk the 1.5 miles to swim and enjoy it. We'd walk back and drive home and pack up her friend's bag. Then an hour or so later I realized I needed my wallet and I once again tore up the house and the car. I finally wondered if I dropped it on the hike so drove out there again as the sun was setting walked the entire way. On the way there I sent a message to Kiana's friend's parents... I kept walking through that trail and if that's not the definition of walking through the woods deliberately... it was exactly when I got to the furthest point and realized it wasn't there that I heard back and the wallet was in her friend's bag.

When episodes like these or the keys events happen, someone always suggests I get something to keep with one or the other or both that's trackable by an app. I cheat/compensate for many of my deficits with technology. For some reason these two are the stubborn holds. My memory may not be what it once was but one thing it does remember is how good it used to be. I keep a tight compensation thing on things that anyone else depends on me on, contacts, calendar. But the things that usually only affect me take longer to accept. It may be why it took so long to stop the seizures because it literally took me years after brain surgery before I accepted an app to check off my medication. I'm a proud man all around. Even as I struggle by merely aging to keep top speed I finished 3 of my recent track workouts with extra fast speed workouts. So fighting aging and cancer this way can't be fully called intelligent or stupid or can they?

But I have an MRI Tuesday and the question lingers are these just oversights or has the tumor grown and messed with memory more? The answer of course is until the results on Thursday I don't know. So a thousand thoughts go through my mind on an extra 3 miles looking for a wallet about that MRI. How to properly balance nervous energy and hope I don't have a great answer to. Some of it I do by looking at recent victories. Kiana just finished her 4th grade year, once again with straight A's and perfect attendance. This was literally just a few days after I paced her for fastest 5k yet in the worst weather she's ever done a race in. A new PR of 23:37 and she was once again the highest fundraiser at the event, beating both her time and fundraising from last year.

It also happens to be the 5k celebrating its 40th anniversary. When me and a few others joined the Austin Runner's Club the race was barely over 100, the next year it was 350 and this year we went over 500. The right team work... worked. Not only that, it was almost 5 years ago that I started doing races in a stroller but still my parents were out there too going side by side and finishing the race together. There are those who say pride is a sin but we're Leons so that's a good pride in my book. Whether or not I'll make 40 will remain a question for at least 3 more years but we enjoyed that the Daisy 5k did.

How to manage being nervous about whether or not something has lost equilibrium is by testing my own fears. At a friend's birthday party I rode once of those ancient bikes... I rode first and longer but also fell harder than anyone else at the party. I choose to act on the belief that sometimes balance doesn't have to be graceful or modern.

In fact the retouches, remodeling of the house continues. Just today I got the flooring that will get put into my bedroom soon. The room that had never had anything done to it will now have a new closet, a redone bathroom and now a new paint job and floor. With the MRI so close I honestly thought oh I should hold off on that until I see the MRI results since if they go bad I won't be alive that long much less living in that house. But ultimately I decided that no matter how it all goes, literally the last few steps when I rise in the morning or when I go to rest will be on a floor of my choosing. I in fact won't have a chance to get it done until after the results are in but it's going in no matter what to ensure that something still wins quite literally step by step.

The coping mechanisms haven't changed, perhaps having even grown more intense. Between pacing and racing I did 3 races last weekend, 2 the weekend before that and I have 3 tomorrow. Each has been with family, friends and the Bond girl. Tomorrow I am doing the Atlas ride with the Texas 4000, a group that cycles from Texas to Alaska to help out with cancer awareness. It was to be part of one of their rides that I actually learned to ride a bicycle a few years ago, something that would be very useful when I wasn't allowed to drive. And now I'm doing it again tomorrow with the Bond girl. From there we go to a trail race where we'll camp out. It was after a camping out race near a lake where she asked me out on our first date. The universe is being very kind right the weekend before this MRI. Perhaps the reason the bedroom needed some retouches in many ways.

I had lunch with a pastor friend and the honest truth is I didn't even tell him about the upcoming MRI. I never know what to say because people always offer to pray and I've never prayed that my cancer never grows. There's always songs I listen to when all of these things are going through my mind about if anything is growing in my brain. One of the most recent additions is the one quoted at the top and what this entry is named after, Even If. It's basic premise is that even if the mountain doesn't move, hope stays. It's a word I hang onto, one I make out of rocks and wood in moments like when Elaine and I went to the South Congress area of town with Kiana yesterday. There is a wall there that Austin is known for that says 'I love you so much.' Every once in a while it has to be redone because some moron feels the need to blemish a local landmark. There's only been two times I've ever taken a picture next to it both just on the spur of the moment, neither time retaking or enhancing the picture. They were almost exactly 4 years apart which gave me perspective on that I've gotten 4 more years of this little girl's life and of my own and of many people. The message was right behind me then and now. Even if everything goes horrible or wonderful in tomorrow's event or Tuesday's test, I think cancer is so far behind it can never come back, at least not to win. And that is why everyone mentioned here and a few others not mentioned at all is why cancer lost and why I'm thankful for all that. Because even if it all goes great/terrible, to them, to life, I love you so much.