New Voicemail

The weather outside is frightful. Actually, for this time of year it is downright disgusting. As the holiday spirit continues to elude me, I await ‘the call’. It has been 6 months since the last clean scan. I am due. Happy Holidays. Felix’s Nativesdad and all that.

Public perception usually is dictated by television. Medical shows more often than not do a hatchet job, no pun intended, on the true happenings between patient and doctor. There is no haunting musical overtone alluding to a possible future. Doctors aren’t all good looking either. No offense to the fine staffs that I have had the privilege to be cut by. There is no priest standing by. There is no brilliant yet unorthodox in their approach medical scientist that will swoop in with a last minute idea that NO ONE IN THE WORLD thought of.

It’s more basic than that. There is a deadly silence. You always remember the lack of sound. All you hear is the singular voice speaking to you.

And there is no bracing yourself for it. It’s the good, the bad, and the ugly, in one distasteful swallow. In many ways, it is a standoff, only you are guaranteed never to draw first.

If subtly had a gravitational force, one may turn into a black hole. I attempted to draw first.

Process is king in the medical world. You don’t get a ticket to the show until your agent health coverage approves anything you do. So you wait.

I’ve never grown rich on my own patience. I called to see if/when I would get my next scan. Call it a To Do of life.

I always ask for Cindy. She is the best representative of any office. She’s pleasant. Informed, probably more so then she can ever let on. She has seen many walk through the door, some for the last time. She carries on with the same attitude and smile. She has a job to do. She knows me by name of course. I can tell when she picks up the phone that this is not the best of times for small talk.

“I’ll get back to you. There is a backlog.” She’s being polite but I know when to hang up.

Now you wait. You draw but can’t fire. Okay. Patience.

As with most things in life, the true triumph and tragedy comes from the fact that no matter what happens in your personal space, the world continues to rotate. It’s nothing personal. Just a reality.

I am at work - a place where it is easy to forget the joys and sadness of the real world. Your call, good or bad.

The task at hand was one of my favorites – lunch. Per usual, I didn’t realize my personal cell was flopping along my desk. Very few contact me this way. The small font is glowing NEW VOICEMAIL.

It is Cindy.

“Joe, looking at your chart you are now going to a yearly scan. Next one is in June.”

There is a pause that ensues like when answering machines ruled the landscape. They knew you were home and waited for you to pick up as you launched yourself over Scooby slippers to grab the reciever.

I can hear a smile. I know that’s not possible but I can.

“Have yourself a great Christmas, Joe.”

It is a long moment before I press 9 to save the message. It was subtle. No fanfare. No angels singing. No champagne to be poured. It just is.

I am still on a leash and probably will be for the rest of my life. For now, the leash has been let out a little.

And I’m okay with that.

Sweet Dreams

It’s called PTSM – Post Traumatic Stress Management. Not that I ever read up on it. This is a fancy term used nowadays by many to help those who have had a trauma in their lives that, well, basically they can’t get over.

It’s the domino effect. The ripple that never ends. I’ll tell you, it’s one helluva pebble in the water.

Sweet dreams are made of this

Who am I to disagree?

I was about 8 years of age. I remember my bedroom being cool, so I am thinking it was autumn or spring but I am not really clear on that memory.

The reel of that night keeps playing over and over. I am used to the sensations now after decades of deciphering, brooding, and burying.

I can clearly say I haven’t slept like a normal person since I was a teen, possibly longer.

I was floating. Everything around me was white. All I could hear was a booming voice that shattered my skull and shook me to the core. It was my dad’s voice.

I had to save something. What it was, I can’t remember. I probably never knew in the first place.

The voice boomed. I screamed to shout above the thunder. Nothing works. All I know is that I have to save ‘it’.

I remember waking up screaming. The dream had faded to the edges of my bed but the waves of terror never really left.

I was surrounded by my family. I had been screaming for a half hour or more. My mother talked me down and I can still feel the thrumming of my heart back then to this day. Some have called it night terrors.

The next day, I arrived back from school and promptly went to my room. A wave of haunting familiarity flowed over my skull. I swooned a bit, heavy with emotion, all of it tugging at my brain like so many rats eating something dead on the side of the road.

It was surreal in every sense of the word. Black art. It wasn’t the last time that my night would be plagued by such sleep patterns but it was one of the most memorable.

I have long ago faced these demons and such dread hasn’t infiltrated my sleep for some time. But demons never fully retreat – they recede. Always on the edges, always watching, and always waiting for your moment of weakness.

I don’t sleep. That has been well documented. I am forever in search of a formula and my patterns have gotten better.

I understand the demons and I find some solace in that. You know the tracks so you know the animal.

As a young boy in a hospital, like most patients, I was awakened constantly for testing. 1 am. 3 am. Stabbed for blood. “How are you, hun?”

Some of them want to abuse you

Some of them want to be abused

I still can’t sleep on my back for some innate fear of being stabbed. Silly but an 8 year old mind has difficulties wrapping around nights filled with a cacophony of machines beeping, whining, and patients moaning for a nurse to come help them.

Brutal? By today’s standards possibly. It’s mine to deal with. No one else’s.

It was years of staying up all night. No college partying. Just staring at a TV test pattern.

Too many nights turned into dawn. So tired I trembled from exhaustion.

I remember feeling comforted by one prevailing thought – I lived through the night.

It’s been decades of working on sleep hygiene. Ambien. Melatonin.

http://www.webmd.com/sleep-disorders/tc/melatonin-overview

Nothing really is a silver bullet cure. Like any sculptor, I have to keep chiseling at the stone. Hammer and hammer until the flecks pile up. I know there isn’t an end to it. This is what I have to do to get by.

Mornings can still be very rough. I try to be anti-caffeine but the body and mind are forced by real life to charge up. I carry a glimpse of what a war veteran may go through. Just a peek anyway. I keep breathing. I keep moving. When there is some sleep, the difference is quite discernable.

The dominos have fallen long ago. The ripple effect continues. There is progress, albeit microscopic at times.

There are days of sweet dreams. Not many, but I savor them.

I’m gonna know what’s inside…

Put on a clinic...

Same walk. This time I was late.

For the first time I noticed that the sign above the clinic stated Edwin Forman.

I had learned that he had retired. He was my primary doctor back in 1974. Like what the late Steve Jobs did for computing, Dr. Edwin Forman forged the hospital's burgeoning clinical research to the forefront of medicine.

It was fitting that his name was above the door.

I am a bit of a museum piece. No, not chronologically. I get a nod as I walk in. He's here.

It's a tad unsettling. In a microcosm of surreality, I am the Elvis of the clinic even for a few minutes.

After the ceremonial information exchange, I go back to the waiting room that had sent me into consternation during the last visit almost a year ago.

This time was different. Instead of being surrounding by balding, bloated children who clung to IV poles while battles between Spiderman and Iron Man raged on, I was alone.

I picked a chair in the corner of the room facing the door. The lights were dimmed giving the room a morose glow.

When you are diagnosed, you feel like the loneliest person in the world. You are handcuffed to a roller coaster and you have to ride. Once you are done with the corkscrew, the nosebleed heights, and plummeting depths, you are asked to get off the ride - alone again.

And now I sit in a 20 x 20 room, a Wii glowing in the corner, and blocks scattered across the tables. Alone.

Looming out of the shadows, a tall eighteen year old male says "Good morning". He's totally bald with a dramamine patch under his right ear. He's lean with a basketballer's body. The IV pole was at his side of course.

I nodded in his direction, ashamed that I had hair.

He drifted back into the other offices.

The nurse practitioner flew in like the opening song from a grand musical. She's over-happy. I am always amazed by this. It's a gift that seems out of place in the clinic. It shouldn't be. I am just not in the right frame of mind.

She isn't alone this time. Her bright smile has eclipsed the young social worker that fell out of a spy novel. Her character replete with chart in hand was already jotting down notes before I said a word.

As the few hours pass, I am poked, prodded and jabbed like a basic prison film.

It's sobering. I feel guilty and it hasn't been an easy road, dammit. I just want them to leave me alone now. I can't of course. This is how it is. You are now in unknown territory. Alone.

"How do you feel? Are you losing weight?"

Hell, I am trying to drop 4 more pounds but thanks for asking.

The nurse leaves me and the counselor, a student intern, alone. She has a few dozen questions for me. She gets a kick out of the fact that I am Italian. She spent a semester in Italy.

Sad. I spent four years commuting, no less, to Smithfield, RI.

"How were your grades?"

"I was diagnosed with ADD. I flushed the Ritalin after two weeks."

"Interesting." (Jotting on paper) "Do you sleep?"

"Not since I was 14..."

More jotting...

She means well. In fact, I think she will actually do well. Part of survival is that the disease can be the ultimate mind-fuck. People like her will help those coming up from the ranks.

Anyway, they take my blood. My phlebotomist is a middle child but her father's favorite. No lie. We talk about such things.

I am sent on my way with a hand picked Wolverine band-aid. They will send me another post card with my next appointment. Joe, Boy Wonder, will be back. I have no answers for their curious questions other than this is what I do. It is who I am. Sure, I can speak to someone who may be staring a similar situation. There is no formula. It's basic dike survival. Shore up the dam before the next wave hits. Pretty simple really. Grab anything, throw it against the wall and hope it holds.

It will hold. For now. I have a few more decades left in me.

After all, I am putting on a clinic...

Survivor Blog Questionnaire

To all Survivors...

I am seeking to catalogue via a series of queries on your life changing event. It will be a set of questions that will be posted to this blog. Outside of your first name, or preferred nickname, all personal information will be withheld. The point of the blog will be to document your life experience, aspirations, functions, dysfunctions, questions you may have, and help you may have to offer.

We are all related. Your words will help someone.

Thank you....

If you would like to participate in this event, please email me at the following:

joe.mazzenga@yahoo.com

Please put in the subject line: Survivor

Be well. Be strong. Be you.

JM

I can't stress enough...

Stress.

I call it the silent punisher. In the very least, it can be the ultimate agitation. The itch you can't scratch. The bill you can't pay. The grass you need to cut...again. And why doesn't the driver with the Massachusetts plate know that their blinker has been on for three miles?

Our ancestors knew stress. Neanderthals (some will state they are not part of the gene pool of modern human kind - sue me) had the stress of survival. Eat or be eaten. A broken bone sealed your fate. Hence, it was a miracle they lived to forty years of age.

Today? We live longer. Science and chemistry have seen to that. Instead of battling herds of wooly mammoth, we battle personal deadlines, inflation, money worries, wars amongst ourselves, social pressure, and diseases that may or may not be manufactured by the very environment we live in.

Same thing? Maybe. Where our ancestors had to fight for survival, more of their physical, instinctual and mental abilities were tested on the whole, daily.

Today, we are surviving on a different level. We match wits with styrofoam boxes instead of killing for our food. We sit all day in the name of being 'productive'. We don't walk miles to forage, rather, we jump on rolling treadmills to sweat for thirty minutes a day.

Still, there is stress. Like The Force, it surrounds us. Sometimes it obeys our commands. Mostly? Kills us slowly it will.

Like high blood pressure, it is silent. It can be seductive as well. Like a good cup of coffee, we grow addicted to heart pounding action. We feel we have purpose because "we're getting it done". To that end, we put deadlines on ourselves.

Is it worth it? Science tells us in many ways that stress is a great way to kill ourselves off.

Think of it if you take a car and max it out between each red light, eventually it will break. It's a fact not an opinion. The slower the pace of the car, chances are the more longevity.

As stated before, whenever I get cornered by stress (in certain areas of life it is inevitable), I repeat five things I am thankful for. Any five. It can be from the extreme to the extremely simple. Just do it. Repeat it. State it twenty times a day if you have to. And always remember to breathe.

It is all very mystic of me isn't it? Not really. It is clarity of thought and a restatement of what is important in life.

I can't stress it enough...

An Uphill Climb

This blog goes out to my Uncle Nicky and Eddie Paradiso.

Fifteen.

Today was the day. Another year had gone by. I felt the equivalent of tumbleweed passing by.

It was odd all around.

I just received news that Eddie, a friend I skated with for years, had passed away. Forty-nine years old. Pancreatic cancer discovered in April. Dead by July.

This was on top of the passing of my Uncle Nicky who fought for three years until he could fight no more.

Another friend’s dad was going in for a biopsy.

What the hell was going on?

I had to focus.

Fifteen.

I always walk into a roomful of stares in this office. Older people with walkers, wives holding up their husbands, and vice versa greet me in my running shorts and football tee.

I’m not here to be tested. I am here to break the rules.

They call it a stress test. You get on a treadmill and they jack it to College Hill scale and say, “go”.

It is my secret wish to never go to this place again. For now, I am here to show them, that is, show me, where my marker is. Today it is 15 minutes.

Eight years ago, because of well-documented treatments, I had emergency triple bypass surgery. Eight years of scars. Eight years of head shaking from therapists. Eight years to make a 5k my marathon.

It all comes down to 15 minutes on a treadmill. Every year I have extended my time a few seconds more. Last year it was 14:30. I could have gone longer but I was talked out of it and they pushed the big read, bozo button that stops the treadmill.

Not this year – 15.

I’ve had the same nurse for three years running. I like her. She talks a lot. I get the whole life story from the kids in the neighborhood to the fact that one of her workmates can’t even download a ringtone to her phone. She talks to me while the time passes on the treadmill.

“Joe? Joe Mazzenga?”

I am the only one in the room and someday I’m going to not answer just to see if they come over and check an ID or something.

It’s not the nurse. It’s not my nurse.

Her name is Faith. She’s a little thing standing about five foot nothing with silver starfish for earrings.

Truth, I can tell she might be new to the place.

Harder truth? She is quiet as a mouse.

The silence brings back all of the thoughts and questions. What if I don’t make my goal? Does that mean I am taking a step backwards?

The old technician from last year is waiting for the both of us. He’s never overly friendly. He just likes to take cold gel, a blunt instrument, and stab my ribs in an effort to impale me. No worries, I’ll show him too.

I am sore. Everything aches. I just need 15 minutes.

We go through all of the paces, wiring me up, asking me the same questions, and finally hooking up a battery belt in a last ditch imitation of the 6 Million Dollar Man (http://www.youtube.com/watch?v=HofoK_QQxGc).

“Your BP is 106/60. Ready?”

I want to shout out, “No! Wait. Group hug!”

“Yup.” That’s all I got.

Stage 1 is a walk in the park. Okay, maybe with a breeze in your face and a slight uphill. Here is where my old nurse would start talking about dancing, her son in college, or her boyfriend that needed a job.

Faith just looks forward. “A little steeper. A little faster.”

I keep thinking she will sprout wings and grant me a wish. “What is Stage 2?”

“Excuse me?” she asked.

“Sorry I thought you wanted it in a form of a question.”

Lo and behold. Things got faster and steeper. I think she did it on purpose.

To be quite honest, screw stage 1 through 3. I know I have these. Cut to the chase. Stage 4 and I am usually running uphill for real.

“Steeper and faster.”

Keep thinking and breathing. Since there is no conversation, all I have to do is breathe.

Fourteen minutes have passed. I can do this now. I know that for sure. I want to high-five someone.

Now I sense a presence. The old tech.

I look over my shoulder and he is watching intently, arms folded.

“Fifteen minutes,” Faith states. She is now smiling. “Want to go over?”

I had to ask. “Did you change the test?”

I wasn’t running. I was walking very fast. I was breathing but I wouldn’t call it all out gulping for air.

“Yes. I want to go fur-”

“No. Shut it down.”

What’s with the old man tech? Is there some sort of train coming through he had to catch? An old man tech convention where they were giving out prizes?

I was peeved.

“Shut it down.”

Faith hit the big red, bozo button and my 15 minutes-plus faded into a sagging ramp slowly puttering to an inchworm’s crawl.

I have to throw myself onto the bench where Vlad the Impaler hits me with a blunt instrument.

I wait for Faith to leave for a moment.

“I could have gone farther.”

“I know. If you go beyond 15, and something happens, she will be to blame.”

I think he just wanted to go to the convention.

Fifteen. The new goal conquered.

Dammit, I am having my cardiologist write me a note next time. Do I sound bitter?

Faith is back with water. It’s over. All of the tension that was built up over the days has faded now. It’s back to the real world. I want some sort of bad plastic trophy or maybe those lick on stickers to celebrate.

Eddie, I skated with you for years. I went to your Facebook page and saw you actually had an ID. I wanted to hit the ‘friend request’ but I knew that was now futile.

Uncle Nicky, you and your smile will always be with me and my family.

To Uncle Nick and Eddie – I may someday see you again, smile, and maybe even skate.

I dare say not for some time, though. I have a little Faith seeing to that.

Two Years and Counting

It’s always the wait.

It is hot today. I took my simple driving pleasure to the parking garage. It’s really cool to rev the engine throughout the echoing levels of the surrounding cement columns. Someday, I am going to go for it and smoke ‘em when no one is looking. Not today, though.

I jog down the stairs to the cluttered main street below. As part of my day job, I have an ID I keep forgetting about, attached to my hip. I’ve been asked once or twice for hospital directions because of it. I just might throw on a lab coat one day and run through the halls screaming, “It’s alive!”

Not today, though.

No matter how many times I’ve been to the same office, I always look up what floor it is on in the main hallway. As I wait for the elevator, I keep re-running the scene from Aliens when Ripley is waiting for the elevator before the harrowing beast gets her. Nice tension builder, but I don’t need any more anxiety as it is.

By now, a wall of impatient patients surrounds me. Everyone is a Ripley. I know the routine. The Pavlovian bell rings as the elevator hits the ground floor and I mouth the same words each time it does.

“Wait for it.”

No one does. Like an attacking force, they batter the people trying to get off the elevator like it is the last elevator of the day. I hop on last and remember to take off my ID. I can’t diagnose today. I’m off the clock.

There is the ceremonial ‘last guy’ who always dives onto the packed cabin. I keep scanning the last inspection notice. You never really know when that weight limit will truly be tested.

We are all partners for a few floors. Friends sucking in the same oxygen. Rescuers to those who try to get off on the wrong floor. Personal space monitors as the doublewide baby carriage squeezes in.

Fourth floor. I take a left. Wrong. It’s a right. Damn, I’ll never get that correct.

I walk past the disinterested “parking validation clerk”. I actually don’t know what she does outside of validating parking passes and looking disinterested.

It’s all deep breathing down the long hall until I meet Mrs. Claus as the main desk. She is a jolly woman, glasses, portly, and always ready with my chart. I had overheard her talking to a patient about the anniversary of her husband’s death. It had been twenty years. I’ve always felt sorry for her after that but she keeps smiling. I suspect she still smiles even when the disinterested validating ticket person gives her grief about walk “all the way down the hall”.

The patient types are wide and varied. I’ve seen the shock and awe. I’ve seen the beginning of their journey. The muttering as to what’s next, losing weight, even tears. I’ve seen old and young. I just try to keep to myself.

I pick up a holiday magazine – 2005. I make a mental note that every recipe in there would take me three hours to prepare. Someone had a three-page article on how lard is making a comeback. That was 2005. I wonder how that worked out for him.

I am not usually a patient person. Today, though they can take their time.

A mother daughter combination sits next to me. I am lost in a chocolate ganache recipe when I am overcome with perfume laced with the pungent scent of Marlboros Unfiltered. The daughter is in her late forties, I’d guess and she keeps cutting off her mother’s sentences. I see the signs of the children becoming the parents. She slugs a diet coke to suppress her wet hacking cough.

I put down the grand year of 2005 and go through some hockey saves. I have a habit of compulsively going over situations where I am playing goal and making saves. It’s a habit. I’ve wakened myself in the middle of the night, kicking out a leg many times.

“Joe, come on in.”

Damn, I’m the only Joe in the room.

The examining rooms are cookie cutter. I wave to Cindy as I walk by. She’s one of my angels. She brings order to the chaos by making appointments and always smiling with her Patriots smocks and funny colored scrubs. I wish my day job had a scrubs-only policy.

“Have a seat and he’ll be right with you.”

What she really means is – I will hear heavy footfalls, a rustle of paper then a large man with the face of a ten year old, will shoulder his way into the room. Literally.

I use sanitizer on my hands for the third time in the office. Why the hell not?

My doctor is a surgeon. Not just a surgeon but also the surgeon. Head of Surgery. The dichotomy between his scalpel and his blunt approach was noted from the beginning. He doesn’t hold back, mince words, sing or dance. I like to think I am his pet project since I am one of ten cases in the world for what they found.

He shoulders his way in.

“Hey…Two years. It’s been two years,” he says. He doesn’t even have my chart.

“Yup.”

“The images were perfect.”

I don’t celebrate. I don’t lift The Cup, kiss the girl, drink the milk or pour the champagne. This is my moment. It could have been a moment that would turn back time. It didn’t. It cements my present. It paves the way for my future.

“Good.” That’s about all I got today.

“You are different,” he says. “We will do this in six months again. But everything is negotiable. You are still high risk.”

That’s why I don’t celebrate. I know the picture. I don’t think about it – much. For the moment, I am normal. It is his duty to give me the crude truth. He just doesn’t know that I am going to outlast him into his retirement.

I shake his hand. He has plumber’s hands, which is odd to me given the delicate cutting he does daily. No matter. He could use a jackhammer for all I care.

I stop by Cindy and give her a wink. It’s my “See you in 6” wink.

The whole office nods and I give the final Pope Wave.

Someone someday might cause me to pause and think about my future. Some blip may show on my personal radar.

I will do what I do and that will continue to be whatever it takes. Simple stuff really.

Someone may tell me I have an issue someday.

Not today, though.

What's in a year?

Spring is here.

As I plow through the miles on my run, my lungs are infused with that yellow gunk known as pollen. With the apocalyptic rain we have been having, everything is green. Flowers paint the ends of driveways and the neatly landscaped lawns are dotted with hues of purple, yellow, red and white.

The temperature is fluctuating and I feel like this is as close as I'll ever get to understanding what menopausal women go through. I miss my snow demons as my lungs fill with hot, sticky air. I wonder what the weather is in San Francisco.

I glance at my stopwatch for some reason. It's never good news as I round my half mile markers. Just shave off thirty more seconds. Is that too much to ask?

Funny, when I am in the gym, punishing myself (Okay, you got me - I'm Catholic), thoughts of the disease never seem to filter into my mind. Call it the pounding music - I guess it's hard to get all philosophical over Linkin Park's Bleed It Out. Call it the fact just being stone cold comatose at 5 am.

Running is somehow different. All five senses flare at once. Memories fight each other in a cacophony of color and hazed over thoughts. Worry digs in to battle the eventual endorphin high.

This time of year one is surrounded by beauty, change, growth and reminders that life is good.

Then you get a letter. It is from your chief guy in the big ugly building Time for testing. It is time to be sure you are clean.

Another damn hill. Why can't I make it look as effortless as those people I pass in my car? Their legs all springy and you just know they are passing mile marker ten somewhere. My god, sweat, will you? And put your freaking' shirt on - no one wants to see ripped abs. Geeze.

I feel good. I am good. I am strong now. Yet, I will gulp down a liquid with the consistency of wet concrete, and the odd sickeningly sweet, baby aspirin and KO pectate that coats your tongue for days, all for the one scan that will verify that I am clean.

Can I be sure? Never. Survivors have the widest and farthest rear view mirrors. Every ache is analyzed. Every lump is prodded. Be sure to eat your veggies and wear sunblock before you turn on your lights in the bathroom. No one outside of the circle understands but I am thankful they don't sometimes. Just sometimes.

Mix in work, writing, a nuclear seven year old and you have a hodgepodge of emotions roiling like Narragansett during hurricane season only not nearly as picturesque.

The hill is over and the neighbors beagle is yelping his head off. He's been zapped by the invisible torture fence so he's not going anywhere and I am pretty sure Stephen King didn't have a beagle in mind when he wrote Cujo. Truth be told, I am so tired he could latch onto my leg for all I care. I'd just bite him back.

I'm still waiting for the endorphins to kick in. You'd think I'd be addicted by now but more than likely I'd run into a telephone pole or get hit be a Beamer if I was an endo addict. Nope. All I have is that sucking sound coming from my mouth in an impossible attempt to breathe normally.

I look down. A good rule in running is that you shouldn't see your feet. If you do, you are striding too far. Not an issue with me. I was passed by a Santa once during a Jingle 5K. Not fair and not funny.

Can I be sure? Never. I know I am clean. It cracks me up to just say it. I often sound like a prisoner out on parole only I get shaken down by people in lab coats.

Questions. Questions. I am clean. I just have to prove it soon. Again.

Bare Foot Bare Soul

We don’t want nothin’ from you

So you’d might as well take it back – Pint Shot Riot

I have recently switched over to ‘barefoot running’. It’s not truly running barefoot. You wear a special shoe what, basically, has a zero drop heel or something called ‘flats’. It shifts your body into what it was designed to do.

After a couple of years of ITB, knee and foot issues, I had to try it. It’s an odd feeling. Sort of like you are running in your slippers. For years my quadriceps took a beating and I didn’t know why. Now my calves are aching and for once, I think that is correct.

Still, with my new running, old memories remain. I have a nasty habit of projecting improbably or truly dour futures as I puff down the pavement. My shrink stated once that it was an attempt to control the future, which, of course, we can’t.

I agree with him. I can’t control the future, but I constantly try to deal with something that has never happened.

It extends to all parts of my family. I see loved ones pass on and I think of how I will react. I think this is something stemming from discovering your mortality too early in life. Being a child who ascertains that they can die isn’t a normal circumstance. It's a crime against all children that is played out all too often.

Gone are the immortal teen years. Gone is bulletproof quality of your twenties. You tend to look behind ever bush and under every rock. You literally wait for the signal. I have been through more funerals in my mind than I care to count. I even have the music selected for the ceremonies and what I would wear.

I went with more hills today. Damn hills. I hate them. I keep resetting my body to be in the proper running form. Fatigue makes that harder. Head up. Arms at forty-five degrees then forty-five degrees more and pulled slightly behind you.

Everything comes and goes no matter where you hide


I won't let you take everything that I deserve

Timing is the melody behind every word 


So get in where you fit in 


Time to put in on the line – Pop Evil

I always wait for those endorphins to give me that runner’s high I read about. I know they work. Maybe that is what keeps me from total depression. Like prayers to fend off some unholy monster, I start my Thankful List. I go over it constantly until my music fills my head. I even play a little air bass or guitar. Anything as a distraction. The clouds stretch for miles as they rest in a pillow of blue background. It really is a beautiful place to live, this little planet.

I am on a downhill now. I crack myself up as a G35 coupe races up past me. I am flying downhill and I give it an extra kick in case the person in the car is watching. Yes I do this a lot. Image is everything. In my head it needs to be.

I am strong. I am healthy. I will continue to be so.

I round the bend. Another hill. Damn hill.

I’ll give you all……and have none

Just to have you hear by me – Billy Idol

No pain in the knees. None in my feet. My calves protest but no big deal. I am thirsty and dehydrated. That was stupid. A sidebar showing of my impatience. If you want to do this, you do it right.

The tendrils recede back into my mind. The funerals are put to sleep for now. It is going to be sunny today. Deep breathing commences.

I’ll have another chance to run tomorrow.

That's a future I can control.

Beautiful Day

Step back, gonna come at you fast

I'm drivin' out of control, I'm gettin' ready to crash

My heart rate takes a while to get to where a normal man should be for running any distance. I’ve said it before – I am hot wired and governed.

It happens almost instantaneously. Memories and what I call thought-flashes collide. They don’t unfold. They barrage. Demons can invade a sunny day after all.

This weekend I was part of a Korean reunion in Massachusetts. My son played with his friends and the thoughts smacked me upside the head. If I wasn’t a Survivor, he wouldn’t have come to me. The most important part of my universe and I would have never met him.

Eleven mic’d soldiers on a one-way trip

Cuz we’re hardcore

Mechanized

Infantry

A cardinal zips in front of me - My first sign of spring and my favorite bird. I can feel the blisters on my toes pulsing now. They never heal so why bother anymore. I think there are cars flying by but I am too lost in the music and the tide of brain waves.

What if?

Something about breathing hard and fatigue always bring on dark thoughts.

I go over my list of five things to be thankful for. I go over them again. I pick five more and I go over them twice too.

The iliotibial band is now complaining. Lousy running shoes but I am working on that. Even worse running form but I’m working on that too.

For now, I know where I am distance-wise from the finish line and I want to stop.

Lately, it seems everyone is dealing with the illness. You can’t outrun the news. You just nod and take it one step at time. Hour to hour. You deal with what you know and not speculation.

Step by step. It really is a beautiful day but all I hear is music and my hard breathing.

I am angry with my body for not being better. It just means I’ll have to work harder. In my haze, I can barely make out my poor time on my stopwatch. I quickly remind myself that having any time at all is a blessing.

What if?

What about the people that are just starting their journey? You wish you could hand out a map that states, YOU ARE HERE. Then show them the exits.

So give me reason

To prove me wrong

To wash this memory clean

I’m done. I stop for a brief look at my watch and against everything my body was telling me, I start running again. I crossed the finish line but it wasn’t enough. I went a little farther and stopped in front of my house. I clicked my watch one final time. Lousy but it gives me something to work on.

All of the What Ifs fade. I should cool down. I should stretch. I don’t feel like it.

I disconnect from headphones. I keep taking deep breaths.

It is a beautiful day after all…

Cancer Hates Oxygen: Kids in the Hall

Cancer Hates Oxygen: Kids in the Hall: "Today was a long walk down a short hall. Today, I visited the long-term survivor’s clinic called The Tomorrow Fund. Don’t ask ..."

Kids in the Hall

Today was a long walk down a short hall. Today, I visited the long-term survivor’s clinic called The Tomorrow Fund. Don’t ask me what the ‘fund’ part stands for in clinical terms.

There I was standing in the new clinic. I propped myself against a wooden railing and waited my turn at the front desk. I expected a long process. What I wasn’t expecting was the sudden rush of memories.

Gone were the soft yellows and taped tigers that dotted the walls surrounding me. Pictures of sea turtles, and birds, along with supple chairs set to a soft green hue all vanished. The hardwood flooring evaporated and moldy, gray patterned Formica took its place. Carefully laid dropped ceilings twisted into asbestos covered rusted piping and the yielding warm glow of nested CFLs transformed into laser-bright incandescence tubes.

Off-blue vinyl with fake wooden legs took up more room than needed. The Playstation mirage faded into a stack of aged Highlights with all of the workbook sections answered. Worst of all, the sweet smell of cut flowers was supplanted by the acrid perfume of sinus burning alcohol that often announced the arrival of pain.

I was back in the original clinic. Back where the nightmares began. Dank and cold even in the summer. Dusty and rank with sickness in the winter.

One thing didn’t change at all however. The children were the same.

Three, five, seven years of age. All struggling to sustain their childhood energy, taken for granted by millions of non-afflicted children. One little girl played with a Justin Bieber doll that kept snagging on the IV that protruded from her tiny arm. In a fit of dark comedy, the doll’s hair was thicker and fuller than her Raggedy Ann tresses that fought to regain what once was a full head of hair. Her father watched on but I could tell he was elsewhere. Hell, I wanted to be elsewhere. He woke from his stupor only when the little girl demanded it.

A mother, followed by a doting father and a grandmother who made herself up no matter what the destination, carried another bald boy in. His large blew eyes and simple blond strands took in the whole room and rested on me – the oddity in a room of oddities. I harkened back to my parents and wondered if they had the same countenance as those sitting beside me. It’s the look of worry. The look of sleepless nights. The look of hating everything about their situation. The endless search for hope. I don’t remember what my parent’s state of mind was back in those early years but I suspect it was the same visage of desperation.

I was back in the present. The warm hues surrounded me once again. There was no smell of alcohol permeating the air. The children still hustled about with shouts of Iron Man beating the tar out of Spiderman.

A nurse came in and picked me out of the crowd. I got up and waded through the marbles and paper. All eyes were on me fore I didn’t have a toddler in tow. My son was heavy on my mind. He is perfectly healthy and strong. The exhausted faces trailed after me as I left the room. Even the boy playing with the hospital DS Nintendo stopped for a moment to look up. No hair overhung from under his ball cap and his eyes were naked of their brows.

The nurse practitioner took me into a private room and begged forgiveness at being late. She sorted through the mess of paperwork and I took in the photo collage on the wall of children who have passed through this place. I didn’t want to think it but I did. How many of them were still alive?

Here it is - My new routine. More questions. More historical answers. The message being Long Term. The NP judiciously jotted down everything from my supplements, to long-term meds and workout routines to finally “what’s next”.

Still, as I coursed through my banter with my new NP mentor, my mind remained with the kids in the hall. I wanted to stab a flag in the Earth for them all simply stated – I am still here.

Cancer Hates Oxygen: Forever is my time....

Cancer Hates Oxygen: Forever is my time....: "This is an excerpt from my second bout with what I call 'nuclear fallout'. Some have asked what was it like during the diagnosis period. The..."

Forever is my time....

This is an excerpt from my second bout with what I call 'nuclear fallout'. Some have asked what was it like during the diagnosis period. There was no editing. There was no grammar check. This was 'as is'. This is an attempt to encapsulate those very moments when mortality is in full question. *Note - this site that this excerpt was extracted polices harsh language. I am that way so any *** you see, I'll give you license to ad-lib. Here is the beginning... Day 1 Posted May 5, 2009 10:26am For those of you who know me, I've been under medical inspection for over a month or so. Well, today marks the first day of my journey. It's a journey I didn't think I would ever have to do again. As a 6-year-old, I suffered from Hodgkin's Disease. Thirty-six years later a new battle has unfolded. On May 5th, 2009, the preliminary results have been turned in and I have been diagnosed with a sarcoma (cancer) of which my liver is the second place of origin. That is, the liver is not where it has originated from. Where? Good question. Evidence points to gastric or colon cancer as the origin. More tests will prove this out. They, doctors that is, haven't ruled out my previous treatments as a child as the culprit either. Time will tell. I hope I have the patience and mental edge to get through this. This will be my forum of communication to the world. I am a better writer than orator. I wanted to set a few rules before I continue. In no particular order: 1. I am not out to make other people feel good. This is harsh, I know. I should qualify this. You may cry. You may feel bad for me. You may have pity on me. I am not going to go into a stage act to make it better or easier for you. I am pissed. I am beyond angry. The Universe, God, Satan, Mother Earth, whatever, didn't think my family had enough to go through with Pam being a survivor herself. I have a 5 year old I want to see graduate high school, ask for my car, and think of me as a superhero. **** the higher(?) being who wants to rob me of that. So if I appear recluse, angry, sad, or whatever adjective you need to describe my moment, I offer no apologies save this thought - I need you. I need you to understand that I am in a war. It's a personal one and sometimes citizens get hurt. None of the fallout is intentional. 2. I do need you. I am strong. I am sharp. I feel very good actually. I'm probably one of the few cancer patients who can run a 5k, bench 200lbs, get a shut out in hockey (I'm a goalie) and write a **** good story. But I still need you. I need you to make me laugh and see that tears in the rain are just that - invisible. I have enough resolve to go it alone but I don't prefer that. I am asking you, actually begging you, to stick with me. I have wonderful friends, both old and new, and my family is battle tested. The only deal I ask is that you be real with me because I am sure as hell going to give you all of me when I can. Life is too short not to do that. 3. Be normal. Normal is a question of knowing what the moment requires. If I am at work, I expect that we will all go about our duties. If anything I want to be a creature of duty because it is comforting to be in routine. I expect to judge and be judged in my work. I am also an author and I want to be viewed like one. The only way to do that is to write and be heard as an author - not a writer who has cancer. I'm a writer. I'm an author. I won't accept second descriptions. 4. No pity. Don't want it. Don't need it. 5. Prayers, Universal discussions, incantations, good thoughts...do what you need to do. I accept all and travelers cheques as well. I am sure there are more rants coming from me but I am tired. Here's is my promise to my family, friends, enemies and people who walk by me at the mall. - I have many more Christmases (someone help me with a spell check will ya)and Halloweens left in me. Don't you dare count me out. - I'd pit my will against anyone's - any time, any day, any where. I've been told forever that I can't do this or that. I won't be told anymore. - I love you. I might not say it all of the time but I do. More than that, I appreciate you. Always. Never forget it or I'll be forced to remind you. - I look **** good in a t-shirt :) - I had to put that out there, come on, it's funny. This site is simple enough. Sign up if you need to. Share the link with who you feel can benefit. If not, I will talk to you or see you very soon.

Standing by...

It is always well documented among Survivors. The diagnosis. The shock. The crying. The treatments. The pain. The questions. It’s a personal journey that too many take. It’s not a simple test of character. It’s a slamming of the very faith you might have in life itself. That’s when you are on the inside of the game. You are under the microscope, both figuratively and literally. The spotlight is searing. The poking and prodding are maddening. It is a macabre show and you are the unwilling star. But what if you had to watch? What if you had access, twenty-four seven, to one of the worst reality shows every produced? Many know of my often-documented journey from six-year-old Hodgkins patient to scarred adult. Many more don’t know that my wife is a very recent survivor of Non-Hodgkins Lymphoma. A different situation indeed. It was December 2006, almost two and a half years before I had another round to deal with myself. My family was preparing for a usual Friday night dinner out. Pam was in the middle of changing to go out when she noticed her right leg was suddenly swollen. Puffed so much, she couldn’t fit her leg into her regular jeans. We agreed it was time to go to the ER. She travelled herself and I stayed behind to watch The Boy. It’s the very moment of hesitation before the roller coaster plummets. The skip in your heart when the murderer jumps from behind the door. After all of the treatments. After all of the pain. After all of the caring that I had received from countless people with names that I never knew, I was out of place. Pam called me from the ER and the process had started. She was admitted after an MRI showed that a mass was blocking a major vein in her right leg. A mass. She had never spent a day in a hospital in her life and there it was – a mass. In a flood of surrealism, she was subjected to biopsies; scans and the word came back – NHL. From under the microscope to outside the bubble, a new level of pain washes over you. Someone you care about now is the subject. She was now the guinea pig. Radiation was first. Silent. Invisible. Deadly when misused. After effects still unknown to science. Next came the barrage of chemo. I remember when the first hairs began to fall out. The first tears. Pam never flinched. While I fell to pieces with panic, sorrow and pity, she stood her ground. At the time my son was about three years of age – a blessing at the time. She was going to watch him grow up. She refused any other option. She would be tired. Ever so tired as the radiation sucked the energy from her. Her will had stamina, however. Bald, she strapped on her head kerchief or plopped on her cap and went on with life. Our son has very little memory of her ever being sick. Doctor visits dwindled. Scans are now the norm. Clean is a way of life. NHL can be nasty but we have faith. Very recently her doctor made the statement that is more fact than opinion. “You will just have to get used to being healthy.” Watching outside of the bubble is like viewing a person drowning. All you can do, sometimes, is press up against the glass and scream. You can use supportive words. You can work to pay the bills. You can hold them in your arms but in the end, it is they who must learn to swim again. I have survived the disease and I have watched a love one walk through the carnage. I am unsure which is worse.

Cancer Hates Oxygen: Dreams won't let you die inside...

Cancer Hates Oxygen: Dreams won't let you die inside...

Scars

Remember this: your body is your slave; it works for you – Jack Lalanne

My Body tells me no, but I won't quit – Young the Giant

Scars. We all have them. Everything from childhood playground accidents to major surgeries.

I often find myself tracing over them. Remembering how they got there but often just plain wondering how they came to be since I was unconscious for most of them.

My left arm has a ragged mark that zig zags from my wrist to my elbow. They harvested an artery there. I chuckle at myself thinking I could hide it with some obsidian tattoo with bloodied writing stating “Death from above”.

When putting on my hockey pads, I often think about the scar that runs down the length of my thigh. The surgeon was fishing for a good vein as part of my heart bypass all due to my childhood treatments. They basically super glued the wound instead of stitching it – clever.

There’s the scar across my stomach. One of the originals. I am told that nowadays laparoscopic techniques are used instead of some ancient ninja with a katana. Okay I made up that last part.

Then there is the scar that runs down my chest, tied in with the scar that runs down the center of my stomach. One for a heart bypass and the other for the more recent liver resection.

You get the point. This ain’t no beach body. I’ve been trying to figure out a way to wear a turtleneck during the summer months.

Scars are often part of the treatment. Survivors hold them as badges. Wounds you may not see even on a battlefield.

Those are the scars you can see.

What about the disfigurements you can’t see? Those run deeper than fused flesh and bone. They say soldiers often combat the enemy only to combat themselves after the war – Post Traumatic Stress Syndrome.

You wake up screaming from nightmares that stay with you for days stemming from people who woke you up at 2 am to stab your arm. Depression hits at a moment’s notice and sleep may not happen for decades. Sounds like a war doesn’t it? Only there are no bombs save for the ones that may come from your doctor’s office. The alarms from IV units still ring in your ears. And yeah, the shouts of other patients stick with you too. Some morbid funeral march of moaning and groaning that you never get used to.

These are the scars that truly run silent and run deep. After a few decades of ‘the battle’ there is a light. As I’ve stated before, I tab my PTSS eccentricities as ‘my demons’ - Little creatures that you can step on, yet always seem to come back to nip at your heels. When you make your issues into something tangible, you often find yourself managing them. They may never go away but you can defeat them hour to hour if need be.

To that end, I’ve seen many shrinks. I have a Survivor’s Group that I attend every few months where people from all walks of life share vastly different stories yet there is an eerie commonality as well. These are all patches in my life raft. A leak here. A breakage there. A patch. A band-aid. A temporary salve.

Suffice to say, Survivors may battle more than most. Some would argue against this perspective but I just say we all have our own personal tragedy to deal with. Some more than others.

It isn’t the size of the disease but how you handle it. It has taken me over 38 years to figure that out.

Some speak about it. Some bury it. There is no rule book. There is no wrong way to deal with the fallout both literal and figurative.

For me? Outside of the help I’ve asked for over the years, I just do what is normal and therapeutic. If the alarm goes off, particularly after a bad night of sleep, I remind myself that it is my religion to take care of myself. I do think of myself as a soldier. I imagine the strength I build is wearing down pockmark tissue. The air that huff into my lungs is keeping evil cancer cells at bay. The organics I eat fuel a machine ready for any battle.

Still, deep down, I know I have dodged many bullets.

And I have the scars to prove it.