Tuesday, November 3, 2015

Stitches and 42 years later

As a Survivor you always live in the past.

Some will argue this isn't true. I don't believe it.

Sure, you may not look back often. But the flashes of a reality's past are there. They wait to spring at a moment's notice. You don't know when or where they will come but they do. It may be a sound, or a change in the weather.

Today was one of those moments.

On November 7th, the local hospital is hosting a Survivor's Ball. Very swanky. Black tie, perish the thought, and all of the accouterments of a royal wedding.

It's a money affair. The local rich and famous gather to bid, dance, eat, yadda yadda yadda.

This year there is a unique survivor table. Cutting to the chase, I've had the opportunity to attend and part of that attendance includes a special appearance page in the extravaganza program. The party committee requested a quote from each of us at the table and, if possible, a 'before and after' pic.

Before, meaning pre-treatment. After, of course, well, being after treatment.

Back in the day, before phones, shut it, before selfies, thank the maker, before texting, pictures of events were for special occasions. It was a process to simply take a picture and catalogue the event. Instagram was more a mail delivery idea than present day social media.

My parents dug through their was a flash of memory I wasn't 100% prepared for.

It's not the Flashback Thursday most are used to seeing.

The first picture is post resection of the 1st cyst my father found on a summer day. Below are the multiple lumps that were later removed through radiation (insert ominous thunder crash).

The second, in a fit of irony (Note the cartoon face), was the original markings for my radiation on the recurrence of my Hodgkins. Also note the careful drawing around my heart...If someone, anyone would have had an inkling into the future, that picture would have been more finite - oh well, I am breathing today.

The pictures are surreal to me. I have to admit, I marveled at the fact that I am almost smiling in both even under duress. In the next instance, I am filled with sadness.

And in the next instance, my dad put it all in perspective.

"Joseph, you are still here. You are going to still be here."

 In a span of minutes, the tide had flowed and ebbed. The sights, sounds, smells, and fear, I admit that, flowed over in wave after wave.

Then nothing. There is still reverb, don't forget that. But the worn path was already set behind me.

That's exactly that....behind. 

Yes, there was personal suffering, pain, emotion upheaval...feel free to add the descriptions you see fit.

But I am here. 

We are here. 

It is something a growing band of brothers, sisters, husband, wives, siblings and strangers all share today. 

All striving to have a Before and After. We can never forget those who don't have an After. It's a reminder that we should cherish every moment.

Just breathe.

We all have had our stitches removed and we would all go through it again to put our flag in the ground.

It will wave and say "Still Here".

Monday, July 20, 2015

Number 13

The anesthesiologist had kind eyes. That's all I saw of her face. The rest was tied in a mask and surgical headwear.

"You are getting some medicine now..."

I remember those being the last words I heard.

I fully confess - I look forward to the artificial euphoria. Call it an addiction. For a precious 20-30 seconds, my world is of superhuman feats, flying, laughing and anything else the Land Of Oz that is my brain can conjure.

This time was different.

I saw Eddie.

I have spoken about Eddie in the past. He was a hockey buddy from a long time ago.

The connection was lost as our lives moved on. Then one day, a few years ago I received the word - Eddie died.

For the next 20 seconds, I saved my attempts to fly and melt things with my mind. I recalled being very somber before the lights faded.

As the drugs passed through my system, I didn't try to fight the way I always do. I saw Eddie skating away.

Eddie had a stage whatever pancreatic cancer and four months after the discovery, he passed.

I don't believe in premonitions. I do believe in lost memories.

I interpreted the dream anyway. It wasn't my time. Not yet.

The burn was not as intense this time around. They "spot checked" as was described to me later in my delusional awakening.

Number 3 is in September. I'll carry on till then. A lost memory turned into motivation days later.

Cut to the gym in the 48 hours that passed...Eddie still skated by in my mind.

Every now and again, we should remember our fallen friends, relatives, even strangers you may randomly hear about. Walk their path for a few meters. Snap out of it and realize you ARE walking for real.

I go take my cardiology test tomorrow knowing what I know about myself and my conditioning.

I wasn't going to be tested but I insisted. We all want to measure how far we have come and how far we have to go.

Eddie didn't go very far in life and that is simply unfair...I think we can use that as a blanket statement. We know it's not fair but we can't dwell on it. At least I try not to.

Now we grab our chips when we can.

I can laugh with my family for one more day. That's worth a drug induced dream.

I'll run the treadmill tomorrow. They will burn me again in a month.

Eddie, this one is, well, quite frankly, this one is for me...

Rest easy number 13...

Thursday, May 7, 2015

And the Planets Continue to Rotate...

I never purport to understand anyone's choices. It would be shameful of me to assume or presume.

I firmly believe everyone shares their glories with all (or should) and suffers their tragedies alone. Those tragedies will be judged and measured by someone else's standards. We all care on some level but, trust me, I'd walk away from the comparing. I actually have on many occasion.

A cat stuck in a tree or a baby in chemo? You decide. I have given up on comparisons. We all hold our personal tragedies as just that - personal.

Your suffering of a bad hair day will be measured. The long line at the store that is making you wait, will be measured. Traffic. Work. Your team losing. Your hair falling out. The next test result. The pain. The anxiety.

All measured to what the world is dishing out.

Someone starving in Africa, cares little for the dying patient in Hospice care. They can't afford the feelings. They have their own survival to worry about.

It doesn't always have to be to this extreme. We all do it. We all go under the knife, scope or needle and feel there is no greater tragic injustice. And really, at the time, there isn't.

But just walk away for a moment and try to feel someone else's tragedy. It can be easily dismissed when measured. You can also empathize and absorb shocking sobriety from it.

I am convinced that true courage comes from the situations we're put in. Some may seek out certain instances in order to be brave, but a vast majority have courage because the situation demands it. You can't hide. You have to take it with everyone watching.

One such act of true courage, and there are many, many examples surrounding us, comes from the patient documented in the Facebook Status above.

She is someone I confess to not knowing in high school very well. To be fair, I didn't know many very well.

Through the glory that makes Facebook actually useful for once, I have grown to know her story. I don't know details behind the details. I know enough.

I know that what I go through is measured to what she has gone through. I do it purposely this time. I do it as a reminder to me and anyone who may listen. I measure it because if I didn't know what courage was then, I know what it is now. I may not witness it ever again. It may never be measured in my lifetime.

I have measured now.

What I see, feel and hear is someone who can't don a cape and fly away. She can't wave a wand and grow a cure. She has no armor or stasis chamber to slow down the bullets.

She is armed with a slight flower of faith.

To me? It has been measured. And it is the human spirit beyond what I believed humanity could exhibit. Shame on me for that.

I do not pray. I do not cry.

Just sobering admiration.

I will say what will be blaspheme in the eyes of others. I've lived through it and I have never understood this lord's choices.

It is my hope her story as well as anyone else's never ends....

Wednesday, April 8, 2015

Thoughts that burn...

So 'the zone' has been mapped out. The all too familiar area in my chest where I was blasted as a child...

They will go in and burn away the layers - the theory being new cells will grow back.

A new chance. There are all sorts of official stats that I am not going to read. The words morbidity and quality of life have been bandied about.

I just hear "a new chance".

They can burn once or six times. I'm in it. I'm nasty. I'm in the mood to get it done. I've left the pity for myself behind. Deal with it, Joe. Deal.

Stark reminders have a habit of showing when you least expect it and most need it.

It was the end of March. She was just 9 years old. A diminutive, piano playing daughter, with her whole path before her, a life yet to be lived, died on a Thursday.

Most in my area will know of the accident - a tragedy in every sense. There was no blame, no protagonist to point a finger at. There were only victims.

A wake of people forever changed. A ripple that resonated for many and spoke too loudly for many more...

For other Survivors, this was a reminder, not a harbinger. This isn't a telling of what is to come. This is a statement of what life really is.

Moment to moment, until the universe deems the end of all moments. Snapshots put before you to savor not ignore. A feast if you can inhale all of them...a famine if you let the moments slip away.

Some of us wallow, and I confess that I am one, too long in our own personal circumstance. When you pick your head up and look around, you can at least say you have a fighting chance fore you can pick up your head AND look around.

You are in the colosseum of life. You wield a knife, even a dull one. There is a puncher's chance of getting out of this. There is a chance...slim or great - a prospect, or probability.

For the 9 year old girl, there is no more drum beat. There is nothing save for a fading undulation in time.

In a few weeks, I go in for the burn. Knife in hand. The colosseum doors open once again.

There are definitely stats on success and failure. It all speaks to be given a chance.

To walk at dusk. To stare at the stars. To hear a park full of laughter. To breathe.

For that, I am thankful. We all should be.

Tuesday, February 17, 2015


*Note - harsh language - This particular post is not for children.

I've learned that it's best to admit your fears.  There is no room for posturing bravery.

Let's face it, we never truly conquer fear in the long run. We do adjust, fight, dig in and stand up to our fears situationally.

A fear of spiders will always be deep rooted in one's psyche. But faced with life or death, you wouldn't hesitate to hold one. It's the situation that dictates what you do and how you will handle it.

I'll admit it. I am scared. I am afraid more often than not. The world has made me this way.

I watch cartoons and escape with fantasy. I write worlds of violent, triumphant hope. All in order to escape the fear.

It builds on itself. Brick by brick. Diagnosis by diagnosis.

I've learned to live with it. There are hours I ignore it. You have to. You have a job. You have a family and friends. You can't cowher or you would be rendered useless as a human being.

I have a 'radiation' zone. Documented or not, I may be redundant, but part of my childhood cure was to be "blasted" in the chest region with radiation.

Part of the routine is to keep an eye on the area. I've done my best to keep my part of the bargain (that much has been documented).

I turned vegetarian.

I'm a border line athlete/workout whore. Excuse the language but it's true. It's my definition not yours.

My "few times" food list is longer then it ever was and my "always" food list is my religion.

Still, they found something.

Never one to have anything routine, I went in for the endoscopy - a test where a flexible tube with a camera is pushed down your throat to the esophagus.

Another confession? The drugs are stupendous. I totally understand why someone would be an addict. But I'm moving on.

Now I'll be frank, I've had chronic GERD (see heartburn) for decades. It has never been stated that the radiation caused such scarring but if I had money, I'd make the bet.

A lesion was found. Most of the time, most of the polyps are very early or just removed.

I got the call from the Gastro doc a few days later. He called himself. A sign.

It displayed something that wasn't correct in our industry of surviving. Now I want to point out in really large letters - IT WAS NOT CANCER.

A step below.

In the information age, I immediately did something inane, insane, and downright stupid - I went to the internet.

Something I tell people not to do...I broke my own rule. Stupid.

What I found? Of course, everything I did not want to see.

Everything from odds on becoming cancer to full esophageal resections (read, removing your esphagus).  Bad....

I melted a little. Nothing you can do about that. I have targeted 90 as a good life.

It's a slap in the face. It's a mind-fuck.

There was an immediate appointment. There had to be. The doctor stated he wanted me in no less than 2 weeks.

The appointment came through - 4 weeks. Four weeks? Wait a second. When did this double? Couldn't get an anesthesiologist? What?

More despair.

For the short time after, my wife was the only voice of reason - we were in preventative mode.

She was right.

Fuck it. I was in preventative mode. I did not have cancer...This was found. Had they not found it? We won't discuss that part. You don't dwell on perceived losses only reality. The focus began.

On the hour I would recite (still do) - I am healthy. I am healed. My results have shown that.

This was my life. I caught myself. I was breathing. Hell, I even felt good.

Here is where I tell other Survivors - You have to be your own advocate.

It so happened I was seeing my surgeon - simply known as The Man. As stated previously, he is the director of surgery for Rhode Island Hospital. A Sloan Kettering he's that good.

It's like having an issue on a 757 and you're sitting on the side of the pilot who designed the aircraft.

He knew of my situation - I told him the urgency.

"You work your end, and I'll work this one."

The appointment was moved up 2 weeks. Urgency.

This time I was going under. They found an anesthesiologist. It was cut time. The drugs weren't sedatives but hard core knock outs.

His name was Dr. Bert.

He was reading my chart...."Whoa, you've been through a lot."

A brief explanation and he simply said, "I'm sorry."

He kept reading but continued, "We didn't know back then."

He confessed to being half deaf so he talked a little louder then most. He stuck me, first try, when all others shied away and promptly stood up to leave for a moment.

He wheeled around. "Need anything to relax you?"

".......not yet....."

He turned and walked out, humming. The nurse came in and whispered. "Do you know him?"


"He's the Chief of Anesthesiology. He's fantastic..."

She said nothing else, and left me alone.

Another rock star. Coincidence or not I was feeling blessed.

Dr. Bert came back in and wheeled me down the hall while wailing out the song "Amazing Grace".

I had just previously accepted the feel good stuff. "This isn't a funeral," I slurred.

He chuckled. "Thumbs up if you need more sedative."

I don't remember what happened next.

Resection was the easy part for me. I am used to cutting things. You do what you have to do. The pain is always temporary(ish).

Be your own advocate...I called the office days on end. No results to be had.

Finally, the admin simply said, "Call back Monday."

Monday 9 am, I found out the office was closed.

Tuesday 9 am...I left what had to have been my eighth message in 7 days.

The call came back at 10 am. It was the admin again.

"The doctor wants to see you in two to three weeks. Which do you want?"

"What are the results?"

"Two to three."


"Ok, he wants to discuss some medications and routine with you."

"Is there something urgent? What's the urgency?"

"No.....not urgent. If it was, we'd have you in tomorrow."

Two weeks it is then.

For now a hurdle has been jumped. My focus is still clear.

I am healthy. I am healed. My results have shown that.

Yet, I am still afraid.

But I am healthy...That focus is greatest of all.

Wednesday, December 31, 2014

Changes 2015

*Author's note - all embedded videos can be viewed on laptop*

"You gotta be willing to take the hits..."

2015 is here. I salute you for getting here. Hell, I salute anyone who got here.

We don't give ourselves enough credit for the journey. We always want the goal.

Well, here's to the journey...remember to relish each and every step.

This is also the time of year where resolutions abound - I tend to make them as the year goes on but for tradition's sake I'll give it my best shot.

- I will listen more, and talk less
- I will write till I am sick of it then I will write some more
- I will be as fit as I possibly can - sole reason for being there for those around me
- I will attempt to find balance in all things, life, work, and play
- More green veggies
- READ more
- LAUGH more
- SMILE more
- I will keep moving as best as I can. I find moving makes all of the other resolutions easier
- I will be myself to the best of my ability and apologize to no one
- I will give more of my time
- I will work on patience for all things
- I will dream more
- I will say I love you more

These are short list items....most of us have them as a To Do.

As we stand at the precipice of 2015, we stick our toe in the water to see what we are in for - truth is, we have no idea. We find comfort in the fact that will embrace the same old routine as we did last year but if you look back it wasn't exactly the same now was it?

Spread your arms and dive in.

2015 will be ours for the taking. We will own all of the victories and all of the bruises.

We will have patience with the baby steps forward, and we will have hope with the major steps backward.

We will laugh more.
We will cry more.
We will know that we make a difference to one or many.
We will lend a hand and a heart.
We will not ignore a cry for help.
We will know that there is work to be done in life.

We are willing to work on ourselves because the best 'you' that you can be makes this world a place worth saving....

Enjoy your accomplishments.....more to come....2015. Own it.

Have a happy and safe New Year...

I appreciate you and I am thankful for all that you are.


Wednesday, December 10, 2014


I want the future now.

I've often said, especially when someone is first diagnosed, that there is no better time than here or now for medical miracles.

They didn't exist 50, 30 or, for some, even 10 years ago like they do today.

Still, I'm borderline obsessed.

On the hour, I seem to have to remind myself that I'm alive...breathing....thankful.

Still....there's an obsession.

I've had the fallout. I've had the shock. I've had the cure.

What about the scars?

I don't mean what you can/cannot see. I don't mean those squiggly, jagged folds of skin that healed long ago. It's not the stapled areas in your chest or the scar that runs down your arm.

These are what I call, the topical scars. They never go away so I don't fight them. Muscle and hair don't hide them so why bother?

There are other fallouts that I haven't discussed.

I'm obsessed.

Stem Cells. Regenerative properties. Proteolytic enzymes. Hormone therapies. HGH.

I want what was taken from me and I don't care why. I actually don't know why...yet.

But my obsession comes with a price.

My dreams have been invaded with doctors I've never met - All promising me reversal of some of the fallout.

The guilt over the audacity and selfishness of my ask hits the back of my head like a hammer. Those Catholic days are never far behind.

I believe in my heart that the reversal treatments are within reach. I don't want to wait. I don't want go a generation. I want the experiment. I want to be first.

It's as if my Id is in full bloom. It wants what it wants when it wants it.

Then I realize, what a wonderful thing to live a generation more. More guilt. More thankfulness.

The wrestling of 2 halves. Hang on and enjoy or take what I want. It's all mental. All restless nature. Fix it. Do it now.

I have to go back into my mind and strap myself into a hospital bed. Hook in the tubes that stuck out of my side, through my nose, down my lungs, between my ribs...

Walk the hall when one leg couldn't bend because of the glued scar that ran its length. Breathe in a tube no matter how much it hurt.

Online research after online site. Query after query. Doctor after doctor.

Maybe it's an obsession.

Actually, I know it is.