Fish

Tuesday, February 17, 2015

Hurdles...




*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 transfer...read: 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?"

"No..."

"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."

"Two."

"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.

JM


Wednesday, December 10, 2014

Obsession


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.



Thursday, November 13, 2014

23 Things you didn't know about me...


OK so it all started when I was searching for a good, I mean GOOD, vegan egg nog recipe.

Trust me. Being anti-dairy, anti-meat, all that, doesn't mean I don't yearn for the good ole days, like when I was a kid.

I am always on the lookout for good replacement recipes and I've found, more often than not, those clever vegans seem to come through.

That's when I stumbled onto this blog - http://www.produceonparade.com/

The woman's name is Katie and she is an animal saving, mammogram taking, vegan who lives in Alaska. *Author's note: this is SO begging to be a character in a book.

Anywho, not only does this person seem genuine, I found that she used a unique way to introduce herself by listing 23 things that most people wouldn't know about her.

OK, ok, yes, Facebook LOVES to make a game of 23 Titles You've Read, and 58 Selfie Locations and so on....

Many people know me and my family. Let's face it, Rhode Island isn't just a small state with the most awesome restaurants. It's just flat out small.

Still, I wondered what it would be like to introduce myself this way.

I DO NOT like the spotlight. But my goal for this blog is always to show that we are, in many ways, all the same.

23 things you may not have known about me....

1. I hate to fly. Check that...I used to hate to fly. On a particular air trip across the country, I was virtually paralyzed - then the light came on. I'll never see parts of the world if I don't get over this affliction. Now, I sit near the window seat (not comfortably) but I can look out for a few minutes at a time.

2. I am cryptic. Correct. As black and white as I am on this blog, I still talk in metaphor and riddles. Why? Because it stimulates conversation. Just a habit, I guess.

3. I was lead singer in a rock band. Sure it wasn't at Gillette Stadium but for a year? It was fun to pretend to be a 'rock star'...

4. I always firmly believe, beyond a doubt, that I am faster, stronger and smarter than I look.

5. I am an author - yes, I still get surprised looks about that.

6. I am a three time cancer survivor - This is a fact. And I'm not going for a fourth time.

7. I never had a prom date.

8. I was raised a Catholic but I have replaced that religion with music to fulfill my spiritual needs.

9. I have loner tendencies but I love people.

10. After my dog Yukon died, I don't have it in me to have a pet in my life (I confess to owning two goldfish called Cuff and Link)

11. I love football today, because I wasn't allowed to play as a child.

12. I was a true introvert in my teens. Every sense of the word. People scared me. Although I shed my introverted self in my late 20's, I still hold those traits. They come out at THE wrong time. I am still not thrilled about throngs of people I don't know.

13. I abhor cruelty of any kind - ANY kind

14. Two topics I can't tolerate hatred in, is religion and politcs

15. I do believe my spirit guide is a wolf....macho crap aside.

16. I made THE wrong education decision and the wrong college choice.

17. It took me almost all of my life to discover who I am and, more importantly, allow myself to be that person.

18. The nickname Mad Maz was made up by me after the character Mad Max

19. To further that point, I am told I can be intimidating but I do that to see who will look past it. If they do, they are worth it.

20. I grew up loving Spiderman but graduated to Wolverine in my teens.

21. I don't like horror movies.

22. Someday I want to visit Tokyo.

23. My biggest motivation comes from someone telling me that I can't do something...



That's all for now....no big life secrets or home of the Yeti...Until next time...




Monday, October 20, 2014

Answer The Call


Every now and then I'll get a call to play.

I play ice hockey less often these days. I prefer the solitude of individual routine now. Still, I haven't officially retired from goaltending.

I ask myself why. It's not the late nights. It's not the freezing temperatures at 6 am in the morning. It's not the aches and pains of vulcanized rubber hitting you in the few spots that don't have armor.

Why indeed.

Eleven years ago, I was told I may not play ever again. I may not be able to do what I want to do. Walk. Run. Lift. Whatever.

Five years ago, I thought I was going to die. More scars, recovery, healing.

I was told all of this and yet here I am.

This isn't a reflection in a spotlight. It is an acknowledgement of thankfulness.

To breathe is only part of our autonomous functioning but on certain days, I find myself saying Thank You for what someone may feel is no reason.

I am thankful to breathe. I appreciate being alive. I want to grasp, throw, shout, be physical, stay mental (interpret that as you wish) - all that.

We will say Something Strong....Boston Strong. Planet Earth Strong. We should say Me Strong. Sure it falls as a byline in a bad Tarzan film, but it's true.

Mentally, being much more problematic, then physical.

You may lift 200 lbs, but mentally, you have to hold the world on your shoulders.

You can run 5 miles, but you may still cry yourself to sleep.

There is tragedy all around. Life is for better and for worse. Don't mistake the answer - it's both.

There was a time I was so obsessed with seizing and sensing every moment of every day, I would stay up until the dawn - afraid to die in my sleep. Afraid of missing life.

We seize our moments. We get them in 24 hour increments. Most of us ignore a great deal of what happens around us.

A smile. A wink. A laugh. The wind. Birds...leaves. Sun. Rain. On and on and on.

We concentrate on tasks in front of us - a product of our ancestry to be sure. But even our forefathers would stop to see a double rainbow or the lay of the land. An awesome image burned into their minds and our genes.

We can't change tragedy. We sometimes can't alter cataclysm.

But you are breathing. We are breathing. As long as that happens, then life will continue to happen.

It can be on the road, on the ice, in the fields, in your room - anywhere.

Say what you mean. Give what you can. Move someone else to do the same. It's a simple formula.

The average life of a wolf is only 6 to 8 years give or take. If I retain anything from my spirit animal, then I plan to skew the numbers.

May you do the same...

Wednesday, September 10, 2014

Taking The Plunge



For the most part, I blog to create a reality that some may not understand. Many instances are inspirational to some, many are simply informational/casual to others.

There is a battle that isn't discussed but, rather, hinted at, glossed over, or scientifically/politically cleansed. It's the ultimate battle - the battle within.

Physical trauma.  Emotional upheaval. Call it what you need to call it. D) all of the above.

I've stated the fact before - The roller coaster ride will start without giving notice and all you can do is hang on.

Maybe one isn't as helpless as that statement rings. But it does ring of some truth.

The range of emotion ebbs and flows from calm to calamity. Pain to healing. Psychotic to well-being.

Some of these emotions are absolutes....then again, you sign the treatment papers that states you will have all of these side effects or you will have none at all.

See? Absolute...

True or false - yes.

A patient turns into the ultimate roulette wheel. Spinning, forever spinning until the ride is over.

Where you stop depends on the minute, hour or day.

Anger - Go ahead....make my day. Who are you and why are you in my way? And how dare you  assume you know what I am going through. Don't ask me to be normal just to make you feel comfortable. Your job is to excuse me while I take it out on you and know that I don't really mean it.

Sadness - Why me? You will see a ripple from your shore to the horizon and you only hope you get to continue to see the sun set and rise. See Anger.

Depression - More why me. What's next in every sense of the word. Sleep can be difficult making being awake more painful. The future isn't what you thought it would be.

Sobriety - This is it. I go forth. I can't do anything about it so I am going forward. Today I am resolute - tomorrow...we'll see.

Impatient - Well? Let's get started. You've been threatening me since Day 1 so let's dance. Let's go. I have a life to lead.

Bravery - Head held high, you aren't taking me down. Attitude is everything. Mine is just fine. Bring it.

Fear - I know nothing of what you tell me. And the internet has everything from real life medical publications on my disease to places where voodoo is still practiced. In fact, all of this is witchcraft to me. Stop it from spinning.....just stop it.

But the wheel continues to spin. There are hundreds of shades to every inner thought. Too many avenues to take and too many tributaries being formed to keep it all straight in your head.

There will be moments of calm in the eye of the storm. Today you step forward an inch little by little until at the end of the day, you are across the hall.

Don't bother looking back - you are HERE.

Survivors who thrive today live their new normal. It's not even 'new' any longer - just normal. Their normal. Our normal.

Maybe that's why, after the plunge, the air tastes that much sweeter when you break the surface.




Saturday, August 23, 2014

Thriving not Surviving


Eleven years running.

This is literal and figurative.

Eleven years, I've had to take a stress test because of the heart condition caused by radiation therapy.

Two nurses, and one technician later, I was launching off the treadmill. This, too, is a literal statement.

It's a tricky maneuver. You have to jump, electronics and all, to the resting table, flip on your left side and get your arms out of the technician's way so that they can get the all important heart picture while it's pumping hardest.

Eleven years.

This time was a little different, however. Voices, dialogue, all commonplace in my head as the nurses chittered on, sorted themselves out until one voice whispered through.

A fragment of texted conversation slipped through the barbed wire and murmured to me.

My friend and fellow survivor, Ali, poignantly pointed out her disdain for the word survivor.

"I prefer thriver..."

Those words echoed as I threw myself onto the table, with a waiting sonic wand being pushed into my ribs.

Since the first patient with cancer was diagnosed, we have all been tabbed as survivors - People who held on just long enough for the storm to pass.

Some more than others. It's as if a prophet spatters you in paint, showing you to the gods as one who has been afflicted. You've been compromised. You have the scarlet letter.

All true? Perspective.

I will sip from this cup. I have my days of doubt, more than some, less than others. But I am thriving.

As the saying goes, I am not just strong for my age, I am strong.

I can move.

I can think.

I can work.

That's not surviving. That's thriving.

We aren't hanging on. We aren't digging in waiting for the tornado to pass by any longer.

The day you walk out of the doctor's office, the hospital, the treatment room - you are replanted. You are back in the soil of life and you have a shot to thrive.

Circumstances change? Possible. Then you replant yourself again. And again...as many times as it takes.

Look in the mirror. Show yourself how strong you are. You may see yourself in a new light - someone staring back that you've never seen before.

Be angry. Curse.

Smile.

The nurses handed me some ice water. I stared at my time on the treadmill and guzzled. Sure, someone can do better. I don't care.

Many do worse.

Me? I am too busy thriving...