Words

I'll set the record straight - I am not a public speaker. There I said it.
Stemming back to my college days where I lost weight sweating in my oversized sport coat during a class presentation which no one had that guts to have a Q&A because they all confessed they felt bad for me, I have a fear of being in front of people.
It's not a deep seeded fear of the populace. It's not a deep rooted trauma based on being captured by aliens.

I know exactly what my issue is. I doubt I will ever get over it.
That sets the stage.
I was asked to be a part of a panel for a discussion on Cancer Survivorship. Basically, it was a conference to discuss the long term effects of treatments. We're in a sort of where are we going stage of the process.
It's a funny thing when I walk into a medical office nowadays.

"Well Mr. Mazzenga....how are things?"
"Too good"
"Excellent. Bloodwork is fine...."  (Awkward silence ensues). "So. How, um, do you feel?"

Here is where I'd love to turn green and go all Hulk on the joint but alas, I don't even stick to walls. No super powers to be had. Just stunted growth, odd body parts, and something they like to call "chemo-brain". I don't like being in front of crowds. Get it?

Twenty four hours before the conference was held, I was told I was to speak. Not answer questions, but speak...walk up to a podium, hold a mic, and talk. I kept pushing this thought off for a day. I couldn't be the one who goes up there and talks. Not me. I don't do such things.

People will judge. They will see flaws. They will whisper. They did when I couldn't go to recess for months. They drew pictures during high school about it. They didn't even bother whispering. It was brought to my attention time and time again. The sick kid with the odd body.

The conference was a blur. Speaker after speaker got up and did their thing. There was a doctor, social workers, and even a priest.

Then there was an introduction. It was for me.

I couldn't be walking in front of these people could I? I don't remember any of it. The last thought I clung to was watching 3 of my survivor friends in the corner table watching me as I emotionally stumbled to the podium.

Trust me - I didn't have a practiced speech. I just knew my story.

A vibrant, tough, outgoing and rumpled Italian 6 year old boy on a hot July summer day gets pulled aside by his father who notices a lump on the side of his son's neck...

I couldn't get the rest of the story out. A wave of emotion swept through me as if I was transported back to that hot day on the cement steps of my old house. I choked on my words as tears started to swell.

I don't do this. The story carried on as a 6 year old boy went through 2 years of "shock and awe" as I often put it. Three decades later, a bad stress test has the young man in for a triple bypass. Six years later, the Chief of Surgery is high fiving his people over knowing "just where to cut" my liver.

It's not a pity parade. I don't want it so don't bother. It's a reality.

I cough, stop, re-collect then choke again as my stutter through my speech.

I tell the YMCA representative.....JUST DO. Someday, some god, doctor or inner voice will tell you can do no longer.

I am done. Speech is over. People stand....at least I was told that. I stagger back to my seat and berate myself over being this way. I was exposed and I didn't like the feeling.

I have many things I need to change. I work, like most of us, on it daily. Some fail more than others.

I don't know what's next. People ask me in different ways every day.

I don't have a lot to say to them. Who would understand anyway? I am better with actions. Show them.

Sometimes what you do is infinitely more powerful than what you say.

Crazy, yes. Sexy? You decide...

Some days you wake up and you want to re-arrange all of your furniture, set the cat out, get your tickets to San Fran and make for the sunset.

Other days you try, what some may feel, a more radical approach. Kris Carr, like others in The Biz, is a flagship spokesperson even reaching beyond the yellow banner heights of Lance Armstrong. She lives with cancer every day and is a devout vegan. 

No, not someone who hits the redeye for Vegas. You laugh. Someone once asked me if vegan meant just that. 

Vegans are that divine group who will allow no animal product to enter their bodies. A noble cause, and at times a difficult one.

I am not of the religion that subscribes to the fact that humans are vegetable matter eaters and nothing more. No, I believe, sincerely that they human body is one of the most perfect machines in nature and being a killer, a honed, evolution developed, killer of all things.

I am not speaking about wars over crosses and temples. I am speaking about survival. Humans eat things. We are animals. And as such we will not go the way of the Dodo. We eat everything.

Okay commence with the eye-rolling. We would not exist at the top of the food chain had we not made up our minds and our stomachs to eat all that crawled, flew, charged, ran and growled. This was our legacy.

Did it go wrong? I am a firm believer that it did.

Kris Carr takes her message in the book, Crazy, Sexy, Diet. She is a raw, vegan on a mission to save not only cancer patients but the human race.

The theory is pretty simple and, if you dig deep enough, pretty ancient. The human body has a Ph – like your pool in the backyard, if your body is too alkaline or too acidic, strange things grow inside you. I am making that the Bozo Button synopsis, but it is the basic theory.

To that end, Kris illustrates what certain foods, say meat, for example will do to the human condition.

I won’t judge a person who is living with cancer. Until you understand that point of view, then you will never understand what it is to be desperate. To eek out a few more moments of your life. If it means wearing clown paint and singing the Star Spangled Banner, you will do it.

If it means buying a juicer…you will do it.

As I read through her book, I still get the nagging sensation that everyone who contributed to the work was probably either at Woodstock or, quite possibly, was conceived there.

Peace, love and veggies is Kris’s slogan. I might have a distorted image of myself (ask my shrink), but I’ll probably never be confused for a hippy.

As I tell all of those who ask, take things in baby steps.

I am what some would call a pescatarian or, what seems most popular nowadays, a flexatarian. Over 90% of the time I am a vegetarian but I do eat fish now and then and every five or 6 months, I venture into a lean cow.

I do what I do for health reason as well. Here is the new level, however.

Baby steps.

First. Replace coffee with juicing.

Take that beautifully organic dark roasted goodness that embraces the spirit every morning and replace it with a torridly orange, Martian green, thick, watery, some pasty textured drink.

Okay I am being melodramatic but this is trauma for me. First it was just for one day in the week. I won’t go into what sort of zombie with orange lips I was that day.

Next, 2 days juicing, no coffee. I decided to use my juices for breakfast. That’s right, you read that correctly – no chewing for me. No way. For 2 days, no organic oatmeal, organic omega-3 eggs (blasphemy) or egg whites. No apple juice infused cranberries or wild blueberries.

Just me, a concoction and a straw.

The funny thing about baby steps however, is that you wake up and the change is already upon you.

I don’t know how far I’ll take the body cleanse. I’ll restate that I do what I do for my own health. That’s not to say I wouldn’t take out a cub scout carrying a devil dog or knock over a Dunkin for a Boston cream. Trust me, the spirit is there. I just choose to not listen – much.

Next week, 3 days juicing. Wish me luck.

Crazy? To some, yes. Sexy? I’ll leave that to you…

The Day After...

*The following is a harsh account of a post-chemo episode. Some images may be disturbing. If you are sensitive to such images, please discontinue reading. - JM

Saturday morning.

The night was rough. My ribs ached. My mouth was sandpaper. My throat was full of razorblades.

I would begin to get queasy a few days before. It was always right on schedule. Every three weeks.

Friday would start in the clinic. Drab grays and dusty tile. Old, throwaway toys littered the corners. The same old nurse who I figured out years later must have been a chronic smoker always welcomed me in. She always had a candy in her mouth and her hair was ridiculously red even though she was probably closing in on 60.

The long narrow hallways was a waiting area. I would be with other kids - all of us waiting our turn.

One by one the children in the clinic all disappeared into the single rooms. You had to wait for the call. Someone would poke their head out and yell your name, and like a prisoner to the gallows, you trudged into a small antechamber before hitting the brightly lit, still all gray, patient room.

There was always another unfortunate, usually a younger child, screaming somewhere in some closed doored room. It was definitely unsettling. A mass of nurses and doctors would head in the general direction of the screeches. It was a common symphony but one I didn't dwell on. All that mattered was when the door opened to the inner clinic. It was showtime then.

The doctors knew who you were. The schedule dictated everything. Every three weeks. Mazzenga.

Typically a doctor would poke, prod, and question. It was the preface to the sonnet. He or she would disappear behind the door and once again, I would have long moments to ponder the inevitable.

One of my parents was always with me, usually my mother, but conversation was minimal. There just wasn't much to say - this was business.

The door would push open finally and one or two nurses followed by the same doctor would come in. I don't remember anyone ever smiling.

A plastic spit tray held a syringe and an IV pole rolled in with a few bags of magic Drano ready to be poured into my veins. My stomach would lurch at this point. I couldn't help it.

I learned during my chemo trials that it didn't matter whether I ate or not the day of treatment. I was just as nauseous from not eating than I was from having a full day of food. It all came out later, literally.

The struggle to find a vein was hard to deal with. One. Three. Six sticks later the Drano begins to flow. I feel a small burn and the bile in my throat begins to well up. I learned to 'disconnect' from pain this way. Just cut your arm from the rest of your body, mentally. Let it go. Let them do their damage.

The whole process lasted an hour or more. I was usually one of the last to leave the clinic and I always remember the walk back to the parking lot. I always felt 'changed'. Like some sort of poison was inching its way through my body.

Queasiness took over with sudden quickness. Sometimes I wouldn't even make it home. My mother learned early on to have bags and small containers ready in case I vomited before getting to the house.

If I survived the ride, I was met with what should have been sweet smells of dinner cooking. I would simply walk to the couch. That was my home for the night. I rarely made it to my bed.

The couch was a shrine for the evening. 6 pm and my dad would be arriving from work soon.

I would just lay there. I would shun sudden movements. Anything to avoid the unavoidable. I was so nauseous that after a short time, I avoided swallowing my own saliva. I would slowly spit into a large bucket.

My head would begin to swim and headaches were commonplace. The rush would come and no matter how much I steeled myself it was always more savage than I could expect.

The vomiting, itself, was violent. Whatever food was in my system would simply not exist within me any longer. There was a putrid acrid odor that would swirl around me as the hollow sounds of a bucket filling up with my insides resounded through my skull. My ears would be plugged and my nose would often fill with body fluids cascading into a container of mess.

I would imagine I was a monster, transforming each time my innards exploded. My parents worked tirelessly to empty the bucket only to be filled with material that wasn't even food after a point.

After the first hour, my body would convulse. Nothing left to come out but nonetheless, the convulsions continued.

My ribs would squeeze and I could only gulp for air just enough to dry heave again.

Funny enough, I remember the television in the background. I threw up past the evening news and then the Friday night Prime Time shows would start their run. I just kept my eyes shut through it all. Light sensitive. Smell sensitive. Just plain over sensitive.

It was usually around 10 pm or so when the tide began to ebb. I was toast. It was a bad college party for a 7 year old. Sometimes I simply slept on the couch for the night. Others, I actually made it to bed.

It was the morning after that was most sobering. My stomach roiled still - scared to touch anything to do with food. Breathing was killer. My ribs and stomach muscles were shot. I would be hunched over for the day, dehydrated. The taste of bile lingered. To this day I still get flashbacks with certain foods and aromas from the day after episodes.

Yeah I thought I was still tripping once the cartoons began.

It would take most of the weekend to return to 'normal'. Summer weekends meant back to baseball, and winters, spoke of playing football in the middle of the street.

I still remember, and sometimes feel, the recovery. My ball of twine that I eat for breakfast now pales to the Cocoa Pebbles I eventually gulped down during those recovery mornings.

I had weathered the storm. In a few weeks, I would be a mess again. I don't remember how long the trial went on but it was long enough. It defined me and at times, I resent that. I still live with the scars.

And I still remember the day after. With luck, I'll remember many days after this as well.

Perspective...

When I am in there. If I see anything bad in there, I am just going to close you up. It will get pretty rough from there.

I had just skated off the ice. Something isn’t right. Breathing hurts. Being a goalie you learn quickly that the normal aches aren’t, well, normal. Tonight was no different. I had landed like a rock on cement. My sternum took the brunt of the fall.

Could be bile duct. Could be colon cancer. We don’t know. Once we open you up, we will know a lot more.

I set the shower water to incinerate. My toes are white with lack of circulation. A price to pay for cold nights and even colder ice rinks. The sensation is always the same – first there is a burning like my digits are on fire. Then there are the inevitable pins and needles followed by a warm rush of sensation. The pain from the sternum radiates over the left ribs. I turn up the heated water to a point where I can stand it any longer. The theory being I’ll burn the pain away.

If you want more morphine, just push the button.

After the shower, I stare at the scar. It runs over the sternum and down over my stomach. It is raging pink from the hot water. I am thinking Harry Potter ain’t got nothing on me. It still hurts to breathe.

The tube will stay in your side for a few more days. It’s draining fluid. It may be uncomfortable. Do you need something to sleep?

Rotating my torso doesn’t help. Doing side bends is a negative as well. I just choose to deep breathe to see how far I can go. I even hold my breath feeling my heart pound against the ache with a dull thud.

We checked with your cardiologist. He’s okay with the operation. Shouldn’t be a problem.

I hang up my mask and set my equipment to dry. Still hurting. The night is going to be tough, I think. Work beckons in the morning and no one will care about you injuring yourself in your personal hobby.

We will need you to keep breathing through this tube. It keeps your lungs from gathering fluid.

I think I am going to take a rest day. I’ve learned that injuries can derail a regimen for days and weeks at a time. Not a good thing when you are in training.

What you had hasn’t been found in more than 10 people in the entire world. It’s quite amazing actually.

We lost our game. In the past, I would have lamented for days. Losing hurts. Scalpels hurt more.

Whatever bruise I have garnered will manifest itself over the next few days. It really won’t slow me down. I can tell already. It will nag for a bit then go away. I keep deep breathing. This is a hurt I can deal with.

We don’t need to do anything. We took it out and now we will watch.

The game is over. Aches and pains just remind me that my life isn’t. Not by a long shot.

Exercise your options...

Special guest blogger: David Haas.

You can find more about David at http://about.me/haasblaag

The common link between physical fitness and cancer prevention has been proven time and again, though lack of a regular exercise program is acknowledged as only one potential risk factor. Still, it is one of the risk factors that individuals have control over, so the emphasis is justified. Cancer experts have found through a number of studies, both clinical trials and epidemiology, that fitness is just as important during treatment.

Exercise during breast cancer treatment, for instance, has been shown in over 30 studies to reduce the common symptom of fatigue, improve quality of life scores for patients and reduce the risk of recurrence. Unfortunately, it has likewise been shown that a diagnosis of breast cancer typically results in lower levels of physical activity.

Similar findings have surfaced for other common forms of cancer, including hormone-based and colorectal cancers. Exercise is an important adjunct to treatment, capable of reducing the problems caused by cancer and treatments. Loss of self-image can cause emotional disorders, and chemotherapy often results in a mix of symptoms, like nausea, insomnia and poor bowel function. Exercise provides relief from these problems in otherwise healthy people, and modern medical research found that it works just the same for cancer patients.

Risks of Exercise During Treatment:

The primary reason exercise is not being adopted faster by cancer clinics, despite recommendations by the leading research organizations, is patient safety. Doctors worry that patients can be injured or may reduce their body's tolerance to treatment. While it is true that certain forms of exercise are inadvisable in certain conditions, such as high-intensity aerobics during mesothelioma treatment; all patients are capable of and will benefit from the use of a regular exercise program.

What that program looks like depends on medical evaluation and the patient’s own preferences. Most breast cancer patients will be able to engage in moderate-intensity workouts like walking, while those with bone cancer may be steered toward a no-impact exercise, such as water aerobics. For those facing a terminal prognosis, exercise can still provide benefits by reducing symptoms. The more the risk of exercise increases, the more imperative it is to seek the services of a fitness expert trained in cancer care.

Role of Personal Trainers:

A growing number of clinics and insurance plans are providing physical therapists for patients after surgeries, because specialized exercises have shown valuable in speeding up recovery time. Personal trainers can do much more though, especially when working as part of the clinical team. They can give suggestions on the most appropriate forms of exercise, as well as share knowledge of local resources. They are also skilled in helping patients stick to the program. Check with clinics to find one that provides fitness experts.

As always. We have the bullet in our hand - JM

2012. My turn...

Come on. You DID NOT want to squirm and see Dick Clark suffering through another countdown did you?

I didn’t think so.

2012. Twelve years into a new century. Sometimes I laugh at the thought. As a child, I envisioned hover cars, transporters, Klingons, and new worlds. I suppose there is a lot to be disappointed about with the lack of advancement in regards to humankind. Wars are still waged. Global warming still, well, warms. Dogs sleeping with cats. It’s utter chaos.

I used 2011 as a year of introspection. Being a recovering introvert, I am pretty good at tearing my insides up and rebuilding them. Every person is a story and an interesting one at that. My story is no more or less interesting than the person across the street or on the other side of the world. There is drama, heartache, heroics, tears, laughter, comedy and all of the elements that make up something called Life. It is my limited experience that tells me, the difference between human stories is that one of the many elements of that person’s life may be inflated more so than the next person. Someone who has grown up in war torn Bosnia knows the tragedy and heartache of human folly more than the average Hollywood starlet. And that starlet may have personal trauma that no one within 10 clicks can understand. Someone wins a lottery, and someone dies hungry. Someone is born to live a century and someone is born only to die moments later. It is humans being and it can be maddening.

To that end, I have been evaluating all the relationships that I’ve forged in life. This is not an easy task. We meet many people hour to hour. Some are fleeting glimpses of passersby rushing off to their lives, never to intersect with our existence ever again. Others are temporarily permanent. That’s not a misprint. Permanence in our time means little. Those who are held longest in our lives are deemed ‘permanent’ but, in reality, they are just a protracted existence.

Still relationships, good, bad, dramatic, indifferent, take energy. So does blinking an eye. It takes energy, albeit very little. Blink one hundred times as fast as you can? More energy.

It’s well documented the medical miracles I’ve encountered. Perhaps this is the driving force behind my introspection. I am by no means cocky. On the health scale, there is someone out there, probably a doctor or two, who is holding their breath. I don’t speak from bravado. I speak all too much from feelings.

I feel 2012 is my turn and I want to take as many people as I can with me on this journey. That would mean some couldn’t make this trip. The energy is no longer there. The tank is empty but it's my tank, my turn, my guts, and my aspirations. This all is about ‘self’ and with that comes the instant association of ‘selfish’. I don’t believe this is true. I consider this a choice. The betterment of oneself. The pursuit of fulfillment. It’s a path that most ignore. Some recognize this earlier in life. Some never acknowledge it. To say “this is who I am” is being human.

Maybe it is a survivor’s instinct to kick forward with full force. After all, we’ve been told we only have so many bullets left – why not use them? What are we waiting for? We’ve been caught by the storm unprepared and we’ve been told it could happen again. I am no longer waiting for the hurricane to rage again.

It is time. Time for all of us to charge and time for all of us to change. We may be unsure as to when, or where or even how to proceed, but if you look hard enough, you will see your wall. You can see what it is that holds you back from being who you truly need to be. It may take more subtly than brute force, more planning than sheer will. I’ve never been a patient man but I have been a patient. I don’t want to wait for that again. If change is to happen, then I want it to happen, even a fractional amount, because of what I am dictating at this moment.

This is 2012. Twelve years into a new century. And now it’s my turn.

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.