The Long Road... #2014reboot

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Wednesday, May 15, 2013

#459: Losing Weight, Licking Cancer, Living Strong

As I've mentioned before, tomorrow I am giving a presentation that will test whether or not I am mentally able to function as a public representative of the YMCA. It's a crucial step in my rehabilitation and I consider it a make or break event for me. I'm not looking to hit any singles... not this time. I just finished a 2 hour walk where I finished composing my thoughts. Here's a sneak peak at the words and feelings that I hope will win be my job back in just a few hours. ~ Pennsy

They've asked me to make a speech today. The trouble is, I don't really know much of anything, so I'm not very good at making speeches or delivering lectures or preaching sermons or anything like that. Mostly, I'm just a story teller. They want me to talk to you about losing weight, licking cancer, and living strong, and it just so happens I know a couple of stories about those things. I tell you three, then maybe I'll shut up and you can tell me some of yours.

My sister Beth and Me
I was a fat boy. And I grew up to be a fat man. A fat boy. A fat, sad, angry, resentful, lonesome boy. I guess you could say I was really a frightened boy, because that's how I grew up. When I was young, I used to think I was sad because I was fat. Much later in my life, I learned that I had things exactly backwards. I was fat because I was so very sad. Like so many men, I lived for years before I learned that I had a mental illness called Bipolar Mood Disorder. Most of the time, you'd never know there was anything different about me. I might seem especially energetic some days, or particularly down on others, but you'd probably just think, "That's just Bob. He's an emotional guy." But every now and then I have more than just a bad day. Every now and then, every few years or so, I have a week or a month or a season where my emotions and thoughts seem to be totally out of my control. I can have enough energy to conquer the world at breakfast, and by lunch time be in such a dark lonely shadow that I can barely even think of getting out of bed without bursting into tears. Those of us who have this disease find many ways to manage it. Some of us get help from friends or doctors. Some of us try to help ourselves with smoke or drink or some other addiction. My addiction was food.

Eating was something I could control. I couldn't do anything about the grief and the rage that battered me like a hurricane, but I could control what went into my mouth. The more I ate, the more in control I felt. Being sad made me eat. Eating made me fatter. Getting fatter made me sad. And that's how addiction fuels itself.

60 inch jeans, XXXL shirt. 
Eventually, I found the people who could help me to tame the Bipolar monster... at least most of the time. They taught me new ways to think. They helped me find the right combination of medicine and activity to keep my emotions on a more even keel. But you know what? Life is sad sometimes. That's just life. And in my life, I had one way to manage sadness. I would eat. Every time. Until Friday, April 16, 2010 when I stepped on a scale at St Joseph's hospital. I was 49 years old. I was 6'-4" tall. I had a 60" waist and weighed 397 pounds. And that is the story of how a sad, fat boy grew up to be a depressed, morbidly obese man.

Now, here's my second story.

So, that's what cancer looks like...
You may be wondering how I can be so sure about the day and date of that step onto the scale at St Joe's. Well the truth is, I wasn't really in the hospital to get weighed. A few weeks earlier, I found a lump about the size of a raisin under the right side of my neck. Within a week, it was the size of a ping-pong ball, and I was on my way to the doctor. By the time I had had my third and fourth doctor visits, a CT scan and a PET scan, it was the size of my fist. It stretched from the base of my ear to my larynx and threatened to crush my carotid artery. "I can't tell you if it's cancer or not," the doctor said, "But if we don't get that thing out of there this Friday, you may not live till Monday.

Well, it turned out that it was cancer. Squamous Cell Carcinoma, a very particular kind of skin cancer that affects the inner linings of your body. It had started under my tonsil and grown into a 6 centimeter tumor. It had metastasized into the surrounding muscle and the lymph nodes in my neck. They removed 9 nodes, a portion of my neck muscle, my jugular vein, and several nerves; but they never found clean margins. The surgeon cut out everything he could find, but he was sure he hadn't found it all. I was going to need radiation. I was going to need chemo. It was going to be really, really bad. And then the surgeon told me these words that changed me forever.

"I've been treating people with cancer for almost 20 years. Some of they live, too many of them die. They have good attitudes and bad ones. They get angry or spiritual or serene or generous. They travel the world or they go home and call people on the phone to tell them they love them. No matter what their attitude, some live and some die. But the ones who give up... they all die."

"Your cancer has a 50% survival rate. You only have one chance, and that is to fight for your life."

But wait. I was the fat boy, remember? The unhappy kid? The depressed man? My life was miserable. Why would I want to pass up a chance for it to finally be over? It should have been the easiest question in the world, but it took me days to answer it. "Why do I want to live?"

The Hill in my dream
Then, one night, I had a dream. I am standing at the top of a grassy hill, near my grandmother's house in northern Pennsylvania. I can see blue skies and thick, soft grass as I begin to walk, then run down the hill. I look down at my feet, and I realize that I'm only touching the ground with every second or third stride. I am gliding along the top of the grass. Then I rise up. I am flying... no... not flying... I am running through the air, high above the trees and the telephone wires. I look down on herds of cows and fields of corn. It is the most beautiful day and in the dream I know that if I ever beat the heads you live/tails you die odds that the doctors have given me, if I can beat this cancer, then I am going to run. THAT's why I want to live. Because I want to run.

It came slowly. There were days when I couldn't make it from my bed to the bathroom. On my 50th birthday, my mom had to help me to the toilet so I could wretch with all my might, as if I could somehow choke up the cancer along with the sick that the chemo was forcing out of me. There were days when the burns on my neck looked like charcoal, and the blisters in my throat felt like glass shards when I tried to sip water. I spent my mornings bolted to a table while they shot me through with radiation or strapped to a chair while they filled my veins with chemicals so toxic that the nurses had to wear haz mat suits to handle them. But through the Percocet induced haze, when I closed my eyes, I could look down and see those country roads as I flew past. I was going to beat this thing. I was going to run.

The first time I tried to climb the steps, I had to sit down on the third one and call for my wife to come help me back to bed. But I remembered what the doctor had said. The ones who quit, they all die. I refused to quit. I walked to the door and back. Next day, to the porch and back. Then the sidewalk. The corner. Around the corner. Around the block. Weeks went by and finally I was strong enough to try to jog a few steps. Jog two strides, then walk a minute. Jog 10 seconds, and walk two minutes. Never give up. Never quit. The day I jogged a mile for the first time, I felt as if I had just won the Boston Marathon.

I knew that day that I was no longer just a survivor.

I was a victor.

I hadn't just beaten cancer. I had kicked its ass. And I had become a runner.

My third story is about Living Strong. 

Now during the six months from the day of my diagnosis until my first clean scan, I lost about 90 pounds, most of it muscle. I could walk. I could jog a mile, but I was still weak as a kitten. I was determined to keep losing weight. I called it "cancer's silver lining." I kept walking. I ate more and more whole foods, fewer and fewer baked goods. I stopped eating french fries and burgers. No more chips and cookies. I found that my treatment had changed the way a lot of things tasted to me. Cake was like chewing rags. Tomatoes, a food I had never really liked before, suddenly tasted like an explosion of summer air. I learned to love foods that looked like food, not just shapes in a bag or a box. I kept walking. I lifted weights. The pounds kept falling, but I wasn't really getting stronger. I needed more, but I didn't know what.

When I learned about a program called LIVESTRONG at the YMCA, I jumped at the opportunity. It was a three month, free membership. I could use the pool, the weight room, the cardio equipment. I thought it sounded like a sweet deal. I had no idea how sweet.

The original Eight and our coaches
LIVESTRONG is about wellness, not just fitness. It's about training your mind and your spirit as well as your body. It's about nutrition. Learning how to eat so we can help ourselves to heal and prevent the relapse that is always hiding out there in the darkest corner of our imaginations. It's about exercise: Zumba, Pilates, yoga, aquatic fitness, weight training, walking, running, biking... everything that the Y has to offer. But mostly, LIVESTRONG is about us, the survivors. The things we know that nobody should have to learn... that nobody could ever learn unless they have walked the road we have walked. It's about surviving, and about how survival just isn't enough. I didn't want to be a survivor. I wanted to be a warrior. I wanted cancer to be as scared of me as I had been of it.

And three amazing women: Carrie, Chelsea, and Melissa, our trainers helped to turn us into warriors. When they looked at me, they didn't see a fat, sad boy. they didn't see an obese, depressed man. They saw - of all the crazy things in the world - they looked at me and saw a Marathoner. The first time they said it, I thought they were nuts. I thought so when they made me run twice as much as my classmates. I thought so when I was lifting weights and jumping and lunging across the basketball court. I thought they were nuts right up until the May morning in 2012 when I finished the Pittsburgh Marathon in 6:21. And I raised $3600 for the LIVESTRONG at the YCMA program. This May, I finished the Flying Pig Marathon in Cincinnati, cutting my time by almost 40 minutes. And I raised $7411 to help our program to thrive. And I did it because of my brothers and sisters in LIVESTRONG.

For Becky: in a nursing home this morning, her doctors are waiting for her to get sick enough to die, but she hasn't got the time. She's laughing, visiting with friends, joking, remembering fun days together. When Death comes for Becky, he isn't going to find her waiting. He's going to have to go catch her.

For Raynee: a young mother and wife whose life is being threatened by the cruelest cancer of all. The doctors removed an enormous mass from her brain. She knows that there is no such thing as  a guarantee of tomorrow. So every few weeks, she goes out and gets a new, beautiful tattoo. Her most recent? A gray brain cancer ribbon, wrapped around a pair of brass knuckles. Raynee isn't giving in to cancer without a fight.

For all of them. For John and Mary who supported one another through each of their cancers. For Emma whose greatest fear used to be stepping off of a curb. For Pam who beat stage 4 lung cancer and for Frank who never quit until he could finally bench press a 10 pound bar.

They will never quit. They are not "survivors." They are champions.

They know what we all know.

The cancer can always come back. The cancer can always kill us... but it can never defeat us. Not if we live strong.

And those are my stories.


Never give up.
You probably have some of your own. But let me leave you with this word. Don't wait. Don't wait until you are too fat to walk. Don't wait until you are ready to kill yourself to make the sadness go away. Don't wait until you get cancer to know how beautiful and full of possibility your life is.

The ones who give up all die.

Never give up.

Never stop fighting for your life.

Never stop living strong.

Peace,
Pennsy



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