Sunday, March 1, 2015

Four score

March 3, 2011 was when I had brain surgery to remove some of this dumb brain cancer... Actually what I first typed was damn cancer and hesitated thinking about being polite since I once bothered people by upon celebrating the first month without a medical appointment (after 22 straight) by saying "thank God and fuck yeah." Perhaps there are cancer patients whose journey is such that they only have polite thoughts along mile markers of races or life, but well, I am not one of them.

March somehow has always been a significant month since brain surgery. One year to the date, March 2012, of arriving at Duke was when I would wake up in an ambulance with another grand mal seizure in the middle of a run training for the Boston marathon, the one and only time I've ever had one while running. March 2013 was when I would win the Gusher marathon that would change a significant amount of details about my life and where they would start Kiana's scholarship fund. March 2014 I would go back and win the half but more significantly I said a small thank you as a volunteer of handing out medals. And on the first weekend of March 2015, knock on wood, it will be the first time I use a passport to a new place in over 4 years for a Spartan race in the Bahamas... each year it feels like progress to a better place. 

Do I ever do anything to acknowledge the day besides blog and think about it? Not really. I mean March Madness will begin and as always I'll pick Duke to win it all hoping that one time I'll win the bracket with them so that I get a bit of a refund since despite the money billed, they never gave me a degree. I'm certainly grateful that the only medical appointment in March will be at Runlab where I will keep dealing with this injured calf which is definitely making progress. 

I've figured significant coping mechanisms for the memory deficits and ways to make them better. My lumosity scores are not at their highest ever but they are higher than any other March. The membership just expired but when I sign up again, it will no longer be for a 1 or 2 year membership as it has been in the past but rather for a lifetime one which for obvious reasons is pricier. I dare dream that they feel ripped off someday by how much I've used it both in time and years. I can't do it at all you can eat buffets anymore but I intend to in all you can think and improve your brain exercises.

It's dishonest to reflect with being aware that I've certainly made many many mistakes along the way. I've hurt people trying to protect them; I wish I had 100% batting average on getting better at this but there are still times I make apologies. This to me is actually probably the biggest argument about saying we're fully in control of ourselves. While I think humans should be held accountable we do, it may well be what makes us human that we do things we have to apologize for. Making those apologies but also improving the behaviors so they are less necessary is what makes us better humans. Saying we've made progress along the way but I am grateful that by and large there's been some level of reconciliation with the people I owe apologies to. The ones where there hasn't been are still more haunting. Everyone makes mistakes in life and relationships are complicated but the correlation and causation of relationship issues when there are seizures or MRI's... let's just say that's not one mile marker I'm proud of. 

I still try to help out with various organizations and many of them have been cancer related... still believing that to him who much is given, much is expected. Last night Kiana and I were people who got to share their experience at a dinner for Camp Kesem fundraising, a camp for children of cancer patients or people who have passed from cancer. It was a camp Kiana attended for the first time this summer and will again next summer. When she got back from that camp, she said with that ever charming smile that she hadn't had time to miss anyone...  I asked her what it was like with so many of the parents having cancer, she said she didn't now, she didn't meet the parents. That was probably the selling point of the camp because like in survivor groups, it's a bit of comfort to find somewhere where the oddness cancer causes in your humanity, with other people who understand you find yourself feeling normal. At the dinner her "speaking part" was a Q&A with three other kids and when they asked her how Camp Kesem had all changed her life, she answered with her sweet smile "It hasn't changed it; it just made it more exciting." It was raining last night and right around then one of the rain clouds got in one of my eyes and almost let out a drop. But I knew I was raising her right and they were backing me up when the men's Acapella group that was performing tried to serenade her and another girl and she would only go if she was chaperoned by her counselor. That's the way she'll always take on any guy singing to her right?

I'm not quite there but I am getting closer to being the guy who runs despite having cancer, or perhaps running from it. With the media and those types of things of the guy who puts off brain cancer surgery to run a marathon or gets a few trophies by himself or with a stroller, there have definitely been days where it felt like running and cancer were too closely associated. But it's better that cancer and running be associated than that cancer win and running stop. Still I told my neurooncologist at the last appointment that I had PR'ed in every distance since I'd seen him last so maybe the less I saw him the better I got. I've even taken down the bibs that used to hang in my bedroom because, at the time, the cancer media stuff was what they reminded me of when I woke up to seeing them instead of the therapy those races had provided. Sign of progress of the fact that I'm reclaiming my running territory that the only key chain I have is one I added recently of a  Saucony running shoe, the brand that I have raced in since winning that marathon maybe because of superstition and maybe just because if it ain't broke, you don't fix it. The reminder certainly isn't lost on me that I pick up my keys the most often to go drive, something I wasn't allowed to do most of the last 4.5 years. So the keychain perhaps reminds me that run to drive might have been kind enough to let me drive to running group practice. Far more significantly than a keychain, the club I've trained with for every marathon for, the ones who I woke up to in an ambulance, the ones who took me to workouts for all the years I wasn't allowed to drive, well I've made a choice. It's a non profit and we have
elections every year; I've served in many volunteer positions over my entire life but the first new one I am trying out for since brain surgery. I was nominated and accepted running for the president of the club... there's someone else running so who knows if I'll win but anyone who thinks I won't be trying hasn't ever seen me race. The place I've been struggling most is actually on days where Kiana paces me on her bike and I used to have to slow down for her but those days are past. Still I think it's helping me get in better shape. I mean yesterday as I was supposed to do my first 20 miler to prepare for Boston I got lost and did 22. As we say at our running group, and I've seen this philosophy translate both on the board and on the workouts, you can always do extra. That was my longest training run ever and it didn't feel too bad.

The biggest honor of my life still continues to be being Kiana's dad and as I walked her to school a few days ago, I teased her by saying I'd be walking her to school till she graduated high school. Without missing a beat, she said it would be till she was in middle school or maybe 5th grade. I hugged her extra tight and planed a gigantic "embarrassing" kiss on her checked as she walked with her classmates. I hope I'm still around for that day when the reaction to is that teenager eyes rolling rather than the cute giggle of an 8 year old.  If she's anything like me, she'll think her parents are totally dorky in adolescence as she establishes independence, and then somewhere in adulthood realize that it was you changing and that we were among the lucky ones whose parents were always there for them.

But we'll keep enjoying the daily victories and I'll keep noting and noticing the little details like on school picture day she didn't want her heir braided because it had been braided in kindergarten and first grade. That was both impressive because she remembered and also worrysome from a guy whose fashion sense is already struggling to keep track of hers. I'll enjoy the progress of having both her parents there for her at a play and her both struggling and accepting them not being good at co-parenting. Still when it was time for the post play picture, I was both proud and embarrassed that she was the one who thought of and made sure that she got a picture with both her parents simultaneously. 

So 4 years since brain surgery and I'm still standing and running and back to driving and trying to step up to new challenges. It's rare moments when I actually think that I'll be part of the minority that beats the statistics. Hope is my four letter word but it's not just the statistics. It's the human reminders like where I'm watching the two individual people who I've connected with the most struggle with brain tumor growth from the same type of cancer, one at the 6 year mark and one at the 2 year mark. They are both going through treatment and one is doing very well with the experimental one and one is struggling far more. Neither are far from my age though their stage is now 4. Their spouses presences is something I get to hear about a fair bit and with even George Clooney being married now... it certainly gives me some thought. And in simple truth I had the first conversation ever with my mom about my lifestyle decisions of not getting married or having kids again, my theoretical way of protecting someone from when/if this ever grows. 

Like all good mothers and like the great mother she's always been, she wishes that I'd let someone in more and that she would support it. She's the oldest of 12 and had to watch 2 of her younger siblings die far too young, one from health reasons the other of an accident. Both left two kids without a father and mother respective and so having seen that she understands my hesitation in being open to more kids with my odds. Those kids are doing fine but neither of her siblings would have signed up for that. With sadness, while she said she'd love more grandkids like Kiana, she does think that decision is a solid one. But like any good mother she'd like me to being open to being loved and loving more or you know at least having a girlfriend. 

Still, I gotta say, while November 5, 2010 when the seizures started the official brain cancer story and when March 3, 2011 when they removed part of my skull to remove part of my brain... I'm not sure I'll ever shake those dates or not reflect when they are around. Every time they pass, I'm grateful to be reflecting on them and not being reflected on by creatures in sewer water (though my friends have made it clear that no one is going to follow through on my wanting to be cremated and flushed down the toilet). So I'm competitive (as is anyone who went through typical conception cause there was a sperm race and to get here you had to win) and so with both brain cancer and brain surgery, the score is still 4-0 and if it ever wins well I'll have outscored by at least three at this point. And to finish with the words of the wisest woman I now, what my mother said yesterday, one day at a time but I'm happy to see that you've kept living.

2 comments:

  1. Iram, I am in awe of you and your indominable spirit every single day! Keep running and moving forward. I am blessed every time I read your blogs.

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  2. So inspirational. Thanks for sharing, Iram.

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