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.







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