Tuesday, January 22, 2013

A Public Thank You to Livestrong

It can’t be fun to be at your job these days. Dealing with cancer as part of your daily lives, like I have to deal with mine, is not a “great” experience by itself much less with other distractions. My parents were never married; well they were just not to each other so I can personally relate to that sometimes imperfect origins create confusion but keep looking forward. But let me state this to you guys, you were there when I thought my dying day was sooner and until it comes, I’m there for you guys.

We like good stories about athletic achievement and the Austin running community has enjoyed stories about the fact I put off brain surgery to run a marathon and qualified for Boston, that I won Austin’s first Brain Cancer research race, that I came back and won the cancer survivor’s division. I am appreciate of all that and certainly the last couple of years have made me literally grateful for every step of every day. But running is one of my therapies and while I happen to be a guy who runs fast, I do it because for a few times on hill repeats, on track workouts, in long runs, for a few moments I am a little bit ahead of my problems.

But when I first called you guys, a few days after I got diagnosed, you gave me insight into how to choose my own doctors. This all started in the ER and, while I snuck out of the hospital to get an 8 mile run in the day before the biopsy, not one of those doctors is still part of my team because they wanted me to give up too much of my life. I’ve accepted some losses of some activities but I found the kind of team that you guys are, a team where perhaps some losses are inevitable but you fight like hell to keep the important things and you have helped me prioritize them.

When I first made that phone call, all I was worried about was about medical and financial issues. You helped there and even before the surgery would happen, my friends would throw a tournament where some of the proceeds went to you and some went to my medical things. I was grateful that a year later I would be the one organizing the tournament. But then, you also pointed me to Imerman Angels and it wasn’t until I realized how rare this diagnosis that I asked you to connect me with someone who shared it. It turned out at the time, no one in their network would have it but by the grace of the universe in the middle of the tests, someone would sign up and I would get a call to be told that. Her and I are still in contact. You recommended Wonders and Worries which I blew off thinking I obviously knew how to communicate perfectly with a 4 year old, I’d just tell her that daddy  had a booboo in his left temporal lobe. When I went to your parenting class, that was the first thing the presenter said not to do, to not be over protective but also to not make it trivial. It wouldn’t be until the second time I woke up in an ambulance, a few days after winning the cancer division that I would enroll her but since then are conversations are much better. She’s actually come with me to an MRI where the techs explained things to her and to see my neurosurgeon where she sat through part of the appointment. She walked out for the second half but when we talked later that night, she said, “Daddy, no matter what the doctor said, you’re going to be okay.” I hope she’s right. Tomorrow I start the 8 week parenting class with wonders and worries.
There was a time where it looked like this was gone but a biopsy was sent to John Hopkins and it’s still there but having sat through your cancer transition class and with your counselors helped me connect with some people who are still helping me process it. I went to both your cancer and relationships class and your cancer and emotions class. I was amused when one of your staff thanked me for coming to the cancer and emotions class and joked with them, I’m pretty sure you guys made a video about how I suck at this. I didn’t go your counseling and classes because I’ve got it all together and I’m a long way from home but you guys have gotten me much much further than I could have ever imagined.

By the kindness of the universe, I got to train for a Livestrong century and one of your staff taught me how to ride a bike. Due to the side effects of this thing, blackouts, seizures, some cognitive issues, I am on a driving restriction which due to some things in December is likely going to get extended. But I’ve only ever done 2 bike rides, both your centuries and turns out biking to medical appointments impresses your doctors and for me, it helps cool my nervousness.
I’ve tried to pay it back however I can, raising money for the organization and being on your video has made me get a few phone calls from people I didn’t now. I listen as best as I can and always point them to you because you’re much better at it. Trying to keep the “obligation of the cured” that someone once told me and that also took a while for me to realize that it was much better to funnel it forward. While I like the obligation phrase, I don’t consider any of these things an obligation, I consider it my privilege.

On MLK day, I remember his quote “The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy.”
I think you guys are standing very well. There are plenty of people who think beating cancer is awesome and it is but it’s no more or less awesome than being born. What you do with is what it’s important and Livestrong has taught me and many many others how to stand better.

At my house sits a poster that you guys signed and in my daughter’s room sits a little tile that was made. On my wrist still sits the very first band I ever wore. I can’t imagine what day to day there looks like right now but keep up the good work.

Sincerely from a guy who you helped save so many parts of my life,

Iram J. Leon

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