Monday, March 23, 2015

Love It Out

There are moments... incidental moments where the right thing at the right time end up being eye opening at least if not life changing, hopefully in a positively overwhelming thing. I'm rarely overwhelmed with emotion since I apparently need to go to Greece sometimes since I've been a marathoner, a spartan and am known as a stoic.. Still not too long ago sitting at dinner with a friend, reflecting on some of the tougher parts of my life that have come from all this, with a tear going down my cheek, I said all I wanted to do was run a marathon with my daughter, I didn't expect all this.

Someone once said to me that the universe rarely provides what you're not open to and maybe that's true, I often state that the universe balance itself out in the end, not in any one life or perhaps even one generation but the ebb and flow creates forces that work out. But once in a while, once in a rare blue moon or if you were looking at the sky last night anywhere near me you see a star lined up next to the moon and realize it's a planet, Venus to be specific, that bright things are different and yet both brighter and closer than would be easy to assume with a quick glance.

Not too long ago, an interesting typo was made, one that I've since actually used in personal and professional email and is on my Boston marathon fundraising page. As I have sat here and tried to wonder what is the responsible path given statistics and circumstances and reality, I've made choices, some of which have been commended, others condemned. But a brilliant poetic mind suggested that no matter what the ineffable probabilities were that I should relax and love it out. They meant and corrected themselves to say just  "live it out." But it's a typo, a mishap, a non intended phrase that has stuck incredibly well with me, just love it out is something I've repeated often.

And so I've tried to be open to it in various ways... rather than sign up for my brain rehab on a yearly basis I signed up for the lifetime plan. I got higher scores than I had gotten in a while and the single biggest bump day ever. I've got things further out in the calendar right now than I've dared since before brain surgery. I've even let a daydream dance briefly when Kiana is sitting there talking to the neighbors kids and our dogs together that maybe loving it out will someday be trying to figure out the mystery of how to once again find a kid's name that is easily pronounceable in both spanish/english (don't get too excited mom, it was just a daydream I'm not engaged or anything).

Duke had gotten into the sweet sixteen which meant at least some of my bracket was alive. So on the last night of spring break as Kiana did one last track workout, mostly in hope to wear her out enough to where we could get back to regular bed and wake up time, there was a gorgeous cloud overhead and unlike usual Kiana got to take a break so I could capture the scene. She's a gorgeous kid all around but it kind of made my evening to be reminded that she has an awkward put on smile and so the smiles I generally take pictures of are one that I actually caught.

But then today came up, the appointment where I went to go see my neuro oncologist at his new office which is with a different health care group. Well let me step back a second, my roommate and friend, the cute girl I took on the cruise, a friend from church, a friend from running all reached out to me wishing me well. I didn't wake up particularly worried about this appointment but really more angry because this is the appointment that I have to do so that legal documents have to be turned over to Kiana's mother of an annual summary so that I can keep primary custody. I don't know what I did wrong that the balance of the universe felt the need that someone who left me with stitches in my head and on four drugs gets access to my medical treatment forever, if you can handle that completely calmly then you're better than me. When I'm not completely calm I try to isolate myself in conversation knowing I'll get it out later during the workout. My roommate got the worst brunt of it because even as he kindly tried to come with me just for friendship and company's sake, I said and I quote "This is an appointment that I'm going by myself. Until you have a kid that your doctors have to hand over legal medical summaries saying you're still medically fit to raise them, then today's not the fucking day to talk to me." Yeah, anyone who thinks I'm always a nice guy needs to remember nice guys finish last and well I'm not known for placing last.

Still, on my way to the appointment I stopped to visit a friend who also outlived the odds of her cancer prognosis but is no longer under treatment but in hospice care. It's her birthday today, she's turning 34, my age and having a party at a hospice tonight. There's no good word to describe the emotions she must feel as she shared that it's tough on many levels but also that visitors can be tough because she takes less pain medications when they are there to be cognizant enough. She also can't eat anything right now despite the fact a few people were sending her food. I hadn't brought anything but seeing her room decorated with butterflies I know a little girl who draws decent butterflies that I'll be dropping off at the next visit. So that certainly put it in perspective as how petty my emotions and whining may have been on my way to my appointment.

Still, in this new lobby, I was the only person under 60. It was an amusing moment when the assistant who had never met me before looked up at me worried and asked, "Do you work out because your pulse is 42?" There are things I have no clue what they mean medically speaking but I know that resting heart rate is both better or worse the lower it is. I've actually kept track of this and while 4 years ago at surgery time it was 51, it would be 49 one year later, 47 two years later, 45 last year. But now that it was 42 apparently my heart has finally found the answer to the question of life which obviously is to love it out.

When the doctor came in, we talked about my health, medications and obviously but then I remembered exactly why my doctors are all hand picked and amazing. I thought we would do some formalities and checks about things and then he'd write the letter. Last time I saw him he was asking about the New York marathon. This time he asked about my previous races, my parents and Kiana's races, about the Spartan cruise, about how the Boston training was going. He asked for tips on running routes. We talked some man to man stuff not just doctor to patient stuff. And then he kind of did that fine balance of showing why it seems he has two have two hearts to be such a good doctor. He said both from the memory test he conducted but from the way we were interacting that my memory came across better than he'd ever seen it and I told him about the luminosity scores which were on a streak specifically auditory memory, the most damaged memory function and we discussed some deep in and outs as to why that might be. I told him I'd started reading a lot more and we recommend books to each other, him specifically Brain on Fire about someone who had to reclaim their identity to themselves with mental health issues. He talked about how he was sponsoring once again the Brain Power 5k, appropriately enough the race where we met a few days before I officially became his patient. And then he told me about a study that I actually was already was aware of a new experimental treatment that they're doing on people when the brain tumor is aggressive enough that wasn't even around a few years ago when I first got this. I actually know two people on experimental treatments for this already but currently they are only doing it on people who it's growing aggressively on. He talked to me about how the hope/plan/dream is to get it to where people take it like me and it removes the tumor. My tumor is inoperable but if it gets there the hope would be that MRI's and monitoring would be to see if anything has come back, not to see if anything has grown. Those are gigantically different appointments in my view. We scheduled the next MRI and appointment for early June in order for it not conflict with a trip that I have then to help out in DC. Then when it was all said and done as he always done, he said to contact him if anything felt odd and with a smile on his face, he challenged me to a race but admitted that part was just a joke. Still what was supposed to be a formality appointment in my book is one of if not the happiest medical appointment I can remember with my improved memory.

So what did I do from there? Go get a piece of new running equipment which I'll break out in a bit with Kiana as celebration. And I looked up the book and realized that perhaps the only reason anybody got this far was that incidence of living it out and loving it out may seem like a typo but it's a whole lot better when it's sinonym. So maybe it won't all work out or maybe it will but only one way to find out and that's love it out.

1 comment:

  1. Your Roommate, that suave, extra-handsome dude at breakfast every morningMarch 23, 2015 at 3:37 PM

    Yeah, you're a butthead sometimes but luckily, so am I. I may not understand everything you go through but I can definitely relate to the butthead part. It also helps that even with that, you're one of the best men I know. If you were perfect, I'd be nervous =)

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