Thursday, December 10, 2015

Bottom Half of the Hourglass

"They say we are what we are but we don’t have to be"

Dealing with the scanxiety of sitting between an MRI and it's results makes for longer days than usual. Fortunately I had plenty to do in wrapping up some things from the race and it's results. You try to take it easy, to remember to breathe. Someone joked when this cancer journey started that I'll do anything for attention that this was all drama. It was funny at the time but I realize now that a lot of this has just simply ended up being trauma  The people who understand realize it's a tough shift to return to normal life after cancer. When you go from over two years straight without a full month's break from medical appointments to only have having had 3 in 2015 (or 5 if you count the MRI tests as separate but to me they're one and the same), it's odd that it doesn't feel normal to have life to get back closer to normal. Perhaps it's like someone who was raised by an abusive parent or was in an abusive romantic relationship, you start to see the things that are awkward, painful, invasive, and wrong as normal. You start to perceive the perversion of things that should not happen as just the cost of staying alive.  So when they go away when someone is simply checking in about how you are down the road, the trauma, the fears, the blood boils. You want to turn it off, you try it turn it off, you try to redirect it but if there are people who get to 100% back of it well... 100% of my tumor wasn't removed so I'm not one of them. 

"I’m bad behavior but I do it in the best way"

I know I'm nowhere near the top of my game between MRI and results. Me, the guy who loves the crowd and loves people stays away from one on one meetings. I still fulfill standing obligations, I coached chess twice, made my ARC president obligations completely on time, trying to believe that the scanxiety is toned down with being a man of my word. It got built up by an odd thing, shortly after the MRI I had a missed call with a reminder of the appointment but they left a voicemail. There was another call with no voicemail and somewhere my mind imagined something they'd rather not leave said. 

I never quite know how to respond to people saying they wish me well, or that they are praying for me, or sending good vibes. I've never once prayed/wished/vibed to be one of the outliers in the survival statistics of this... I've just tried, when appropriately focused, to live appropriately, live with conviction. Honestly I've always felt guilty about being one of the survivors because if there's any karma/deity/balance to the universe there's at least one guy where places got mixed up because I've seen far better people die of this exact and other cancers and if someone is running the show, I hope they explain to someone why I got to stand longer than they did. Still, it was some comfort as I coached chess club that it was the first time Kiana got a checkmate period. Once during a school meeting with a government representative as they mentioned things that has been promised for a decade out of Austin ISD, the PTA president tried to be more polite while I was a little more direct about how I'd sat in multiple meetings since Kiana was in school with no actual changes. I reminded her and the room that this is why she was the politician but I taught kid that it's good to go after the king. I hope Kiana balances it better than either of us but between the two I'd rather Kiana measure life by results. 

Still, it's always during this time that helps me evaluate relationships. Most of us, if we're honest, know that at any given time we have less than a handful of people who we can be completely honest with. I'm not sure you should do that at all times, we invented social cues and the game for good reasons. But there should be times, people who you can break down in front of, where you're not having to choose your words as carefully or at all when life is a little extra stressful. Like Job's friends even if they disagree with you they stay quiet for a while listening and argue down the road and you know they'll still be friends after even if you're all wrong at some level. Or perhaps it's like the old saying that "home is the place that when you go there, they have to let you in." It is the place that you know will life you up even if you're staring at the ground at rock bottom. The stroller races started because my mom said she'd do her first half marathon at age 60 if I'd do it with a stroller and I started running again. So, she's who I called on the day between the MRI and the results. And we stepped up our game together as family. Last year in January, I did a half marathon and my parents cheered me to win and then I cheered Kiana as she placed for the first time in a kid's race, taking 3rd in the kid's K. This year, my mom helped me look beyond the results and all four of us are now signed for their 1st 10k on 1/10. Life isn't always clean but sometimes it's good when the family branches all grow in the same direction. I do hope that like my parents, my child learns that if you can find people who accept your humanity at your worst while challenging at its best, that's my definition of a saint. 

I’m still comparing your past to my future
It might be your wound, but they’re my sutures


Still, I was sore from all the recent races so I actually took it lightly on the workouts. It's probably no coincidence that almost every single one of my fastest time at any distance is shortly after very good or very bad news, trying to gun from the happiness fuel or gun away from the frustration.

There were still some issues though with trying to make sure Kiana stays in shape if she wants to keep doing the 10k's (which she does). So as you try to deal with the thought that an MRI may show that your path to hell is closer than you think, you try to say 'what the hill' instead and Kiana got the most hill repeats she's ever done in one day. I never did them that young and we usually do them together but this time I was more coach cheer leader... I hope she sticks with them but she liked it and said we should do that again. 

For what it's worth if anyone doesn't think running is my therapy, I did 7 races in November and 4 in the first week of December and there are none scheduled again till January. Therapy takes a break when there's less to resolve. 

I am the sand, bottom half of the hourglass. 

Then the appointment day finally arrives. It was an odd day because as school started Kiana's teacher talked to me about a writing exercise they do. Well I knew about the writing assignment but that Kiana had been writing about a child whose parent dies young; apparently there is more than one Leon who uses writing as a way to deal with worry. Her teacher proceeds to tell me about how both of her parents died at a young age and so she understands that experience and wanted to be sensitive. It certainly makes me question whether or not I should have shared as much as I did with Kiana. How inappropriate was it to take her to MRI's, to bloodwork, to appointments? Did I add my own trauma to hers? Was I mistaken in fighting for custody when someone said they should have it based on my medical issues? Are the 'seizure drills' a bad idea? 

I've been living with the reality of both statistics that the 10 year survival rate of this is 12% and that the doctor said it specifically that odds are that I wouldn't make 40 and thought giving Kiana a view of that, limited of course, was the wiser way to live. Originally when the diagnosis hit, when I put off brain surgery to run a marathon, I resigned myself to the fact that my best days were behind me. I've had so many ridiculously good days to know that's not true but even so, the day still hasn't come where I believe that I have more days ahead of me than behind me, a strange thought for most people in their early 30's, that in my hour glass there was more sand at the bottom than there was at the top. Still, when I arrived at the medical appointment, there was a new sign up or perhaps one I only noticed because of the conversation that morning about how children under 13 weren't allowed in the infusion room. 

Still when the doctor came in, he did his usual preamble of how usually the MRI's may show some difference just because you're not positioned exactly the same. However apparently this is the most consistent I've ever been because both to he and I thought they were exactly the same. So visibly the tumor was stable. And then I breathed.

Sometimes the only payoff for having any faith
Is when it’s tested again and again everyday


We talked about some of the memory functions and how they were also just not getting any better. The spatial orientation hadn't gotten any better. Oddly there I can remember old routes with tons of turn even if they are 20 miles but struggle with short routes even with few turns just because with memory damaged and spatial orientation gone. I missed some of the memory tests that we did today. Sometimes I miss some of it, sometimes I don't which is exactly the damage that I try to describe to people. It's not that short or long term memory is gone; it's that if the memories stay or they don't; always confusing to wonder how much of your life is missing.

But then we talked about something which I rarely talk to people about, that odd facial recognition quirk. I told him about the Bond girl (the only girl I've ever taken on a date to a Bond movie and fortunately this is the one Bond movie where the girl was still alive at the end). Specifically I told him about how I didn't recognize one of her friends that I've met many times when I saw her at the beginning of an evening and once again at the end of the evening. I didn't remember meeting her about an hour apart! Of course, this is frustrating and I always try to get the few people I share this with that it's not that I don't remember their name, I don't remember them. This is when he corrected me and said do you remember how you know them, the context from which you know them, places you've been at together. It's funny how I've always known that's correct without realizing it; so I do remember them I just can't recall their face and well, it took till today to acknowledge it to myself, that it's one part of them even if it's a very important part. He explained to me how that was near where the surgery was. I told him I'm still trying to do it better, to study people's faces on social media in a way that would be odd if not downright creepy in person. He suggested I tell people that when I meet them, that other patients of his share that. He pointed out that most people would be patient and just share who they are and from that point forward the conversation and playing field would be more level. I'm a guy who likes working the room so I can't imagine doing that, swalloing my pride that much. Perhaps that day will come, like the way it took enough seizures before I finally put in a reminder on my phone and a pill container rather than just trusting my memory. But, well, that day is not today.

And if we meet forever now
Pull the blackout curtains down
We could be immortals just not for long.


And then he showed why I love him (is that weird to say about your doctor?). He asked about the races and then he talked about how he had been there for the Thundercloud stroller division this year and how he looked up my results since we were both doing the same race. He asked about other races and didn't reprimand me for the beer miles. We walked about my kid and his two kids and our running times. We talked about Kiana's hill repeats and the Austin Runner's Club and how I was helping out but it was only possible because of the team and we talked about his medical team. And for just a few seconds we took the curtain down between doctor and patient and we were just humans in the same room. 

Then the nature of the relationship got restored and we started talking about the next appointment. He said that obviously I could call him anytime if needed but he hoped next year we'd only have two appointments. As much as I like him the less I see him the more I like him. At the last appointment he said maybe I would be one of the people who would beat this, something he'd never said before. At this appointment, he said we would keep it at two appointments a year until the decade mark (we're only at 5 years). Then if and when we hit the decade mark we'd make it to only a once a year appointment... I've long assumed and believed that I'd not make 40. Honestly I've never thought about a long life for the last several years, I have very few dreams that are very far out and none that are even a few years down the road. I haven't imagined paying off my mortgage, or being there at Kiana's high
school or college graduation or at her wedding; just assumed I'd left her with enough connection to keep her going. I know saying if we get to a decade doesn't create any expectations but it created hope. Who knows if those are 'true' expectations but in my book there's no such thing as false hope.

Unsurprisingly, I had two meetings straight from there, one personal and one business. The personal one was actually with a friend whose a financial adviser. I had set it because it could go either way... if the MRI/appointment had gone bad, I could ask questions about how to sell the house and set up an estate for Kiana. If it went well, then I could figure out what to do with the 'extra' money that might be there next October if/when all old medical debts are settled. I didn't take it too far in but in that context well, I thought about the question of what I might do once Kiana's done with college. The second meeting was about ARC about a race a few months away but after that one I started thinking about the race we're in charge of next December... 4 days after we finished this year. 

The italics in this rambling of thoughts have been the quotes from "Immortals." Most of humanity, myself included, are unaware of our mortality for much of our lives. Then when we become aware of it, we tend to be in denial of it, sometimes even till death. The question of whether or not I'm going to die hasn't changed, I'm still going to die whether it be from or with cancer. We want to believe we are immortal in some form. I don't know whether or not that's true, whether or not this life is it or we continue in some afterlife. I don't spend much time thinking about it. But I am thankful that at least for one more medical appointment that I dare dream that the question of which half of the sand of the hourglass is a little more vague than I thought before. Or should I just say that I'm glad that for one more medical appointment where I get to be immortal even if it's not for long?

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