Tuesday, July 12, 2016

Survivorship Celebration

Another great day to donate! Two marathons and two charities! Let's raise a combined $6,500 for cancer research through Fred's Team and low-income seniors with Housing Opportunities and Maintenance for the Elderly (H.O.M.E.)!

Donate to H.O.M.E. here. Donate to Fred's Team here. More information here!

Check out who had the pleasure of taking a picture with me recently. None other than Craig Thompson, President and CEO of Memorial Sloan Kettering Cancer Center.

Each year the hospital celebrates survivors and throws a party. I was asked to share my experience as a survivor. I shared the stage with Craig, José Baselga, (Physician in Chief, and CMO), Olympic gold medalist Scott Hamilton, and Kelly Leach, another survivor like myself. You know, a regular Tuesday night.

I rehearsed my speech a few times. I don't like reading from notes - and I don't like completely canned speeches - so aimed for a free flowing, almost natural level of speaking. Turns out I needed one more run through. About halfway through I forgot what the next thought was supposed to be. And as my mind raced trying to figure out where to go I paused momentarily. Fortunately this pause came right on the heals of a rather upbeat moment with an impromptu culminating phrase "So I am a survivor." And to my surprise The audience erupted in applause. 

I wonder if it looked as if I had been milking them for feedback. Believe me, I'm not that good. 

A different Tuesday. I match like a rainbow.

Still, It bought me a moment, thought when I charged ahead I skipped an important bit. I wanted to say the important bit first, so I could reference it later - in this bit that I was saying now. Without it, it wouldn't make sense. It is funny to me how my mouth can go on talking while my mind is thinking about how to cut and paste and jump and still get a coherent thought out.

No one noticed. 

A handful of people thanked me. One person told me I had a career in public speaking. José told me, and the crowd, that the next time I took that stage it would be to share my important research. I hope he is right. As my moment of fame quickly evaporated I walked into one of my First Descents friends, Mariel "Montell Jordan" RauerNigro! I had forgotten she was treated at Sloan Kettering too. I loved being reminded of that amazing trip and all the wonderful people I met. Sometimes it seems so far removed from my normal experience that I wonder if it wasn't a dream.

Montell and a few of the other Ouray 11. She has the dark helmet. I have the uncombed hair.
And when she left and everyone else had forgotten about me and was busily crowding the food tables I wandered around and found the photo table and begin to take a few photos which I may use with some repetition during my fundraising. But as I need to pump myself Up for my next run I'll include this one right here.

I'm coming for you.
Lastly, if any of you have made it this far and are interested in what I was supposed to say in my speech here is the text:

My name is Andrew. I am a scientist. I work across the street in the hospital’s research facility. I’m studying the cerebellum – the hindbrain element that enables us to run and dance and do all sorts of important things – and am hoping to find things that will lead to better treatments, cures and one day even prevent the tumors that sometimes form in the cerebellum.

I am also a survivor.

Less than a year after starting my fellowship at the hospital I became a patient. One day I was walking through the halls of the hospital to a lecture. And the very next day I was in the same hallways, now in a bed, watching the lights and ceiling tiles float past.

When diagnosed I was surprised, afraid, anxious, confused, and everything moved far too fast. And When my doctor Alison Moskowitz had finished carefully, and clearly, and thoroughly explaining my diagnosis, and my treatment plan and the first steps to take, I paused, and said, “Wait, do I have cancer?” She graciously started over.

I guess I’m not the only one who has felt that way, or has had such trouble “hearing,” or at least “getting.” But there was something else said that first night. And at the moment I am afraid it is still rather unique.

After getting it, and thinking of everyone I knew that had had cancer, I asked the only important question I could think of, “How much time do I have?”

And here is what was unique.

She replied, “No. You misunderstand. We are going to cure you.”

Some time later, after my treatment concluded, I discussed this moment with the other participants in the weekly support group. It was, we decided, a moment of whiplash. Obviously good whiplash, but none-the-less it felt like crashing and there was lots of confusion even in its hopefulness.

I think about this often. Across the street with our hypothesis and experiments, chemicals and calculator, lectures and seminars we are trying to do just this. We are trying to give more and more people – everyone – this whiplash. Or at least until even the bite of the word cancer is forgotten.

So, here I am, a "survivor." But I don’t see myself that way. Perhaps because, compared with others, I was touched so lightly – the survivor guilt doesn’t allow it. Or maybe because I don’t feel wiser, or more generous, or less worried about the vagaries of life – these wonderful gift others have reported after a brush with mortality. I’m still just me.

No I am not a survivor. I wasn’t cured to be a survivor. I was cured so that I could be just me.

So let me end by telling you a story that pleased me.

During my last round of chemothereapy I took Neulasta. The most painful drug I have ever taken. I guess I never had bone pain before. I now know what "to writhe" means. But it kept me healthy. I heard it was developed at the hospital. In fact, it was discovered in a lab on the floor where I worked – and further, Dr Malcom Moore was still around. So a few days later I stopped by work and found him outside of his office. I told him I had just taken his drug. I thanked him. And he smiled. And then we both smiled.

Thank you very much.

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