A shit-ton of things changed in my life since my last post. And yes, a shit-ton is an official weight.
I got a new job
For one thing: I got a new job. I am now the communications director for a nonprofit organization dedicated to the advancement of compassionate palliative and end-of-life care. Feel free to figure that one out.
This is a huge deal for me because in 2011, the year I finished Temodar, I set a goal for myself to one-day work for a nonprofit organization that advocates for a high-risk patient population. I didn’t know where I would eventually end up, but I slowly tweaked my life in such a way that, when the opportunity presented itself, I would be ready. And guess what? I was ready.
I can’t think of a more perfect organization for me to be working with. Every day I get to communicate about the importance of advance care planning. Yes… that means talking about death. It is a taboo subject for many, but it is a very real topic I have been forced to think about since I was diagnosed with a brain tumor in 2008. And if you are reading this, I bet you have been forced to think about it sooner than you thought as well.
So expect to read more rants from me about this in the future, and perhaps glean some important tips.
Also, I am ready to start writing about my crazy new hobby: Olympic weightlifting (i.e., the clean, the jerk, and the snatch). Look forward to how I will make parallels between the world of neurology and weightlifting in the future.
Am I doing cancer right?
For the first year after my diagnosis I read any book I could get my hands on about cancer, neurology, and survivor stories. I couldn’t get enough of these nuggets of knowledge. I was so passionate about neurology that one of my doctors suggested I buy a textbook for medical students about the visual cortex (he thought I would like it since I have a background in graphic design). After reading the first chapter of that book I should have been granted an honorary degree in neurology.
That said, there was one thing that drove me crazy about the world of cancer survivor stories: the obligatory news story about an amazing person who was diagnosed with cancer and completed a marathon while they were on treatment (or something similar to that).
Well-meaning friends often sent me articles that read like a Mad Libs for cancer survivors.
Check out this amazing (noun) who was diagnosed with (part of the body) cancer. They were on (type of treatment) but it didn’t get them down! No way, no how! They are so (adjective) that they signed up for (type of running activity) and completed it. You should be inspired!
These stories never inspired me. They made me feel shitty, as if I wasn’t doing cancer right. Sure, I was blogging about my cancer experience, and that was inspiring for being open and honest, but I should be doing more.
Guess what? I didn’t do a damn thing before, during or after my craniotomies. And I didn’t exercise for the two years I was on chemo. I didn’t want to. I was tired. And yes, I may have used chemotherapy as a perfectly good excuse to not do shit.
But nearly two years ago I decided I wanted to start moving again. And I slowly got things moving along, and joined a weird gym, and before I knew it I was doing amazing things.
I’m not taking anything for granted
Since I am involved in the brain tumor community I get to meet a lot of incredible people. And unfortunately, all of these incredible people have brain tumors. I wish they didn’t have brain tumors because they have become my friends and when I think too hard I remember, oh yeah, these people have brain tumors and seizures, and they get stressed and sad sometimes, just like me.
The shittiest thing is that, from time to time, these people get worse, and they lose some of their physical abilities. And in a sad-case scenario, some of my rad friends die. (One of them died quite recently and I am not ready to talk about her yet.)
So here is the deal. Sometimes, when I am exercising, and I am doing something challenging or new and I want to stop, I think about all of my brain tumor friends for motivation. And I think about the brain tumor friends who don’t even know me–you just read this blog and leave comments–and I think,
I have to do this or else I am a real piece of shit for taking my life for granted.
In 2008, I received shitty news that I have a malignant brain tumor. Then I paid my dues with surgery, physical therapy and chemo. And every time I go in for a brain scan and find out that there is no new growth I consider myself lucky. But I know that not everyone is as lucky, or has stayed as lucky as I am, for this long.
So when I am working hard, and lifting a heavy weight, or learn something new (re: Olympic weightlifting), or am doing something wild like wall-stands, I think of my brain tumor friends. I think about the people who can’t do what I am doing.
Is that cheeseball? Yes. But I want you to know that I am not that person running the marathon while on chemotherapy. I am just that nerd who is working on a new hobby, thinking, “I am a lucky sonofabitch.”
And I am going to exploit my luckiness until I can’t anymore.