Let me start by saying I have a great support network of friend, colleagues, and relatives who all care deeply for me and my health.  I am gently pushed, reminded  and encouraged daily to lead a healthy(ier) lifestyle, to get to the gym, to eat the proper foods.  I have friends who run marathons, compete in IRONMAN events, work out daily, and dedicate a significant portion of their lives to health.

They inspire me.

They all have stories, anecdotal evidence, and advice from gurus they trust on how to lead a healthy life.  And, for the most part, their knowledge and advice is good and true.  They all have faced personal tragedy, health issues, and have come back strong.  They all have reasons to be proud of themselves and their accomplishments.

Strapped to a table for cancer radiation therapy

Yet none of them have had to endure the ravaging effects of cancer the way I have.  None of them have laid, strapped to a table for almost an hour a day for seven weeks straight, getting radiation therapy.  They have not had to endure three seven-hour regiments of chemotherapy administered intravenously.  A chemotherapy drug called cisplatin that is a derivative of mustard gas and is so toxic that it quite literally oft-times destroys the kidneys in the patient receiving it.

They say sometimes you have to nearly kill to patient to cure the patient.  That’s certainly true in cancer patients.  The morbidity of cancer treatments is very high; at least mine were.  The effects of chemo and radiation have had a drastic impact on my health.  I am now close to the five-year mark; that magical waypoint in life post-cancer where you are considered “cured.”  Any cancer after the five-year mark is considered a “new” instance of the disease and not related to the first.

And yet, for all the time that has passed, I still struggle with the effects of the treatments that saved me.

One of my blood panels

My blood counts are no longer normal.  I get regular blood work done by my oncologist and it always s hows the exact same thing now.  I have low red blood count, low HCT count (the % of red blood cells in the blood), and low NRBC (nucleated red blood cell count).  And while my white blood cell count is considered normal, it is just barely so now.

What does this mean?  It means that I am more susceptible to sickness and illness.  It means that, no matter what I do I will always be more at risk every time someone near me has a cold, infection, or contagious condition.  I am not, nor will I ever be again, “normal” when it comes to my immune system.  It means that even if you have the sniffles and kick it in a day, I will fight it for a week or more and my symptoms will be more severe.

It means you cannot expect me to just eat differently, work out more often, or take more supplements and expect that I will be able to fend off sickness the way you do.

But you do expect me to be like you.  You assume I don’t take vitamins and supplements.  You assume I am not working out.  You assume I am not eating healthy (usually).  You assume, from a position of moral certainty, that I am doing something wrong while you are doing something right.

You are, in fact, so arrogant in your belief that you are right that when I try to explain my weakened immune system – you scoff, cut me off, and look at me down your nose and accuse me of making excuses.  Of using my past cancer as a crutch.  Of not trying hard enough.  You give me tough love because all I need to do it try harder, right?  Stay consistent.

I know you all love me, my health nut friends and colleagues.  I really do appreciate all the fitness advice you give me.  I respect the hard work and dedication you put into it.  I understand that you can point to other people who have beaten deadly diseases and run marathons.  Awesome.  Good for them.

They are not you.

I spend every day, 10+ hours a day, in an unhygienic environment where we work so hard and our work intensity is so high we are already compromising our immune systems.  We have hand sanitizer in every room, but no one really uses it.  The conference tables were wiped clean with antibacterial wipes sometime last year if we’re lucky, the kitchen counters are only cleaned every few days, people work even when they are sick because we have a lot to do and we are all dedicated.  The carpets on the floors get cleaned once a year.

I go home every day to a family of high school kids who are a petri dish of whatever local illness is going though the community.

When you have 35 radiation treatments, run mustard gas through your veins, beat cancer but have a weakened immune system, work and live in a petri dish of germs, then you can come to me with unasked advice and comments on why I am so sick (never really sick, but always a little run down).

Until then, while I respect your opinion on everything else – keep this one to yourself.

But you don’t have to touch the flesh to know that the nerves are dead and that you feel, quite literally, nothing where the scalpel sliced your neck wide open. You can feel the non-feeling. A distant “tug,” when you swivel your head from side to side. A phantom flesh feeling – after almost forty years of having sensation you’re acutely aware of the lack.

Your left ear rings. All the time. Constantly. They told you it’s a side effect of the chemotherapy and that if it didn’t subside in a year, it never would. It’s been almost four years. You know you’re stuck with the ringing for life, but it’s not as bad as it sounds. Your mind has the wonderful ability to tune out the sound so you’re barely aware of it most of the time. Your mid-range is shot to hell. You can’t hear a thing if someone tries to talk to you and there is background noise. Again, the chemo did this to you.

The inside of your neck, on the left side, is hard to the touch. Under your skin, a mass of scar tissue has taken over the inside of your neck and esophagus. This is from the thirty-five radiation treatments you had to endure as they burned the good flesh to kill the cancerous flesh inside your body.

The radiation had other effects as well. You lost all of the salivary gland on the left side of your neck. You can’t eat without a sip of water with every bite. You can’t go more than half an hour without water to quench your parched throat. You’re embarrassed to eat in front of others because your food often gets caught in the desert of your throat and you gag and bring food back up just so you can try to swallow it again.

You get lockjaw and sudden painful neck cramps all the time. Your neck is deformed on the left side as a result of the surgery that removed your cancer. Your doctor took good flesh along with the bad to ensure the cancer was fully removed. Half of the neck muscle has been removed and lockjaw and cramps are the permanent side-effect you’re forced to endure.

You have a massive hiatal hernia and a near-constant pain under your ribs as a result. The feeding tube that punctured your abdominal wall weakened the muscles in the entire area. When you recovered and started working out again, you didn’t realize how weak your core muscles were as a result of that feeding tube and you ripped your muscles wide open, creating the hernia by doing chin-ups in your living room doorway.

Your cancer has been gone for nearly four years now. You hope it never returns, but you live in constant fear of it. This is your biggest scar, this fear of a recurrence of your cancer. Every ache, every pain, every physical anomaly sends you spiraling into a pit of despair. You hate going to see a doctor now, after so much poking, prodding, invasive surgeries and instruments, and yet you get antsy and your anxiety skyrockets if you don’t see your oncologist every few months.

When you emerged from your cancer battle with your first clean scan behind you, you made a promise to live more fully, more passionately, more intensely. Just….more. You did exactly that, for a while. You reveled in your new lease on life. You were happy in a way you had never been happy before. You were active, involved in the community, and full of vim and vigor.

And then, one day, you realized that you had sunk into the same tired routines you had lived with your entire life before the cancer. Sure there are differences, you are a better man than you were before, but you have not come close to realizing the dreams and promises you had made to yourself when your life lease had been extended. The millions of lilliputian stresses and decisions in your life have dragged you down and anchored you into mediocrity.

So here you sit, smiling mirthlessly at your computer screen as you type this. It’s midnight and you’re in a darkened room, wondering where you went wrong. You’re a cancer survivor. You’re one of the lucky ones. You have a wonderful life. A beautiful, loyal, and devoted wife as well as three wonderful children share this life with you. But you know you haven’t reached your potential – that you are not living as completely or fully as you promised yourself you would.

You keep telling yourself that this dark cloud that hangs over your head will go away when you reach the five year mark. That’s a lie and you know it. Your fear of a future with cancer is preventing you from moving forward. One step forward and two steps back. You live in fear of cancer. Intellectually you know that you need to manage this anxiety – that a fear of a possible future shouldn’t affect your present. Emotionally, though, underneath that thin veneer of logic, you’re gibbering in terror at the thought of cancer finding you again.

Curious that you always come back to this. You’re a hypocrite. You want people to see you as strong, brave, and as a survivor – but you spend your days filled with doubt and fear. Your heart is pounding even as you type, because the act of writing about it makes you think about it. Sometimes it beats so hard you feel like it is going to explode out of your chest.

But no one ever sees this. They see only what you want them to see. A man in control. Strong. If they only knew how full of unspent angst and anxiety you are.

Maybe that’s what all cancer survivors do, you muse. Maybe they all have the same fears you do and they all keep it bottled inside. The image of this amuses you; millions of survivors walking around living seemingly normal lives and yet harboring a secret terror and shame inside that they think is unique to them alone.

Shame. That’s the word you’ve been looking for. You’re ashamed of yourself for not being more than you are. You’re a smart man, you tell yourself. If you’re not happy, change something. Change anything. The definition of insanity of doing the same thing over and over again and expecting a different result each time. You know that the only thing you can change is yourself.

Are you strong enough to change? Can you rise above the fear that has held you back and prevented you from being the man you said you wanted to be?

You don’t know – but you do know that evolution is gradual – tiny changes over time to create a whole new species. You know you can’t make grand statements and sweeping changes and hope to succeed.

You feel a little better having recognized and acknowledged your fear and shame. Tomorrow, you decide, you’re going to make a small change in your life. Tomorrow, you’re going to look at that scar on your neck in the morning and smile at it – not taking for granted that you are alive.

Every day I would wake up, drive myself to my radiation treatments, then come home to an empty house.  Every day I would sit and look at myself in the mirror as my disease slowly took its toll on my body.  Every day, the hearts of my wife and children broke as they had to leave me, but there was no other option.

I could have sank into a deep depression.  I could have looked around the empty house and decided to give up.  But I did not.  In fact, looking back, I can’t even say I was depressed.  Worried, certainly, but not depressed.

My wife, a month before I was diagnosed with my cancer, had purchased the game “Animal Crossing – City Folk” for the Wii.  It’s a silly game, with no levels, no competition, no goals other than what you set for yourself.   Your avatar lives in a virtual world shaking trees or hitting rocks for money, fishing, hunting bugs, collecting furniture, and interacting with other NPCs in the game.

A friend of mine once called it the Seinfeld of video games; it’s a game about NOTHING.  I found that humorously appropriate.

The thing is, it’s seriously addicting.  It’s a happy game.  Everything about the game is happy – from the virtual world colors, the characters, the interactions, and the music.  You can spend, literally, hours at a time exploring your town, building your house, and visiting the city.

In my lonely hours every day, I immersed myself in my Animal Crossing avatar – his name is Dude.  He lives in a town called Sparksty.  I would sit in my easy chair, connected to the machine that fed my feeding tube, and played Animal Crossing as the soft whirring of the machine pumped food directly into my belly.  And I was happy, because the game was so innocent and happy.  It quite literally helped me achieve a better state of mind, helped me fend off depression, and gave me a sense of well-being and accomplishment - exactly what I needed as I sat alone with my disease every day.

I would build snowmen while wearing funny costumes:

Building a snowman in Sparksty

I would cover my head for warmth and fish in the ocean:

Fishing in the ocean

I would get wisdom from decidedly odd characters:

Getting a life lesson from an otter

I would take the time to rid my house of pests:

Gotta make sure there are no bugs in my house!

The options are limitless.  As you can see, the colors are happy, the characters are cute, and everything about the game is designed to be a happy venture into a world that you control as much or as little as you like.

You’ve probably read before about video games and virtual worlds helping the sick and the elderly.  It’s absolutely true and, in my opinion, getting patients involved in games like Animal Crossing does no harm and can yield enormous benefits.

In my case, it certainly helped me.  It helped fill my empty days, it helped ward off depression, and helped me beat my cancer.  Of this I have no doubt.  To this day, I still play Animal Crossing, City Folk.  It makes me happy.

The powers of Animal Crossing are pretty significant.  Take a look at this cartoon, not made by me, about someone else’s experience with Animal Crossing:

Video - see the cartoon as a video

Don’t underestimate the healing power of a good video game.  I really, really hope Nintendo makes another version of Animal Crossing – I really think this game helped save my life.

Someone else's experience with Animal Crossing

It was also a journey of hope, love, compassion, understanding, and renewed vigor for life.  When death comes knocking at your door you learn how precious life is.  Each and every day becomes so much more than you expect.  You see love in the eyes of those who care for you in a way you never noticed before.  Strangers, for no reason other than you need help, reach out and touch your life.  Life becomes sweeter, and the hope for tomorrow becomes stronger than ever.

I realized this when I was battling my cancer.  I told myself that when I emerged from my cancer I would be reborn as a new man.  Like the mythological phoenix, I would arise from the diseased ashes of my former life a new and vibrant human being; a man ready to tackle life, with a new appreciation of my life an everything in it.

For those of you who don’t know what the phoenix is, here is the definition from Dictionary.com:

phoe·nix

I blogged in March of 2009 that I wanted to get a tattoo to commemorate my survivorship. I wanted to get a phoenix.  But it never happened.  I was always nervous that my 6-month scans would show more cancer.  And so I waited.

Until the beginning of July, 2011.  Almost three years since diagnoses – I finally admitted to myself that I was well into my survivorship and it was OK to celebrate it.  Most cancer survivors know what I mean when I say I was afraid to celebrate my survivorship lest I find out I was still riddled with cancer.

Last month, I went to Cast Iron Tattoos and got my new tattoo.  My phoenix, on my left shoulder, staring at the scar on my neck, my always-visible reminder of my cancer and survivorship.  I agonized for months of the exact design I wanted and I ended up with this:

My New tattoo - the Phoenix (click for larger view)

I had to be careful.  A number of the phoenix tattoos I found looked suspiciously like the Nazi eagle.  Others looked too effeminate.  And some were overly tribal.  Anyway, Vinnie at Cast Iron Tattoos took great care of me and my new tattoo came out great.

I HAVE emerged from the ashes reborn.  I am a cancer survivor and I am proud of it.  I celebrate being cancer-free and my tattoo is a part of that celebration.  Maybe one day I’ll battle cancer again and, if I do, I will emerge again, and earn a new phoenix as a result.

I was re-reading my blog today and realized that there are a lot of blanks in the diary – I left out things that I didn’t understand, or were afraid to discuss.,  So I will go, post-by-post, and give you a “revisited” entry with greater detail.  Read the original post first, and then come back and read this expanded version.

ORIGINAL POST:  08/27/08 The Scariest Words

There are a lot of blanks in this blog post.  If you look at the index of entries on the blog, you will see that there is nearly two weeks between the two posts.  I suspect I have cancer in this post, and then I jump right into the fact that I have cancer in the next post.  A two-week gap is a long time when you have cancer.  There’s a reason why I didn’t blog for two weeks, though.

What happened in between?  A lot.  Let me fill in the blanks for you.

In this two-week span, I was officially diagnosed with cancer, had my entire world turned upside down, and was forced to deal with my mortality, the knowledge that I was fighting a deadly disease, and trying to figure out what this meant to me and how to deal with my new world.

My son and me 3-weeks before the "lump" was found.

Let’s talk about the sudden lump in my neck.  The lump came on suddenly.  I had long hair at the time that, for the most part, covered the lump, but I did brush it every day.  I washed it daily.  I would have noticed if the lump had been there for a while.  I have even reviewed picture of myself three weeks before the lump was discovered and have determined that there was no lump on my next in those pictures.  On August 2, 2008, Carey and I took my son Matthew to a Valient Thorr concert at the Back Booth in downtown Orlando.  I had a picture taken with Matthew and you can clearly see that there is no lump on the left side of my neck.  Somewhere between August 2, 2008 and August 23rd 2008 that lump appeared.

It was a big lump.  When found, it was clearly visible.  Pulling my hair away from my neck showed an obvious and acute swelling on the left side of my neck.  It was warm to the touch, slightly warmer than the surrounding skin.  It didn’t give when pressed; it was hard like a massive pimple waiting to be popped.  It was so obviously a serious issue that there was no doubt that I needed to see a doctor.

Dinner that night was a distracted and confused affair for me.  I have vague memories of talking to our friends, making polite conversation, and trying to interact with everyone.  I wouldn’t be surprised if they remember me as aloof and distant.  My mind kept going to the lump and twice during dinner I excused myself to go to the bathroom and examine it in the mirror.

I have, over time, realized that everything bad happens on a Friday night or on a Saturday.  It seems that there is a universal law that states that events occur at the least convenient time.  We found the lump on a Saturday, meaning that I couldn’t get in to see my doctor until Monday.  I didn’t consider a non-painful lump in my neck to be emergency room material, so I had to sit and worry and fret all day on Sunday.  I had to go to sleep Saturday and Sunday with the vague worry and uncertainty, fearing that something was wrong, and having very poor sleep as a result.  I was forced to wait until 8:00AM on Monday morning before I could call my doctor.

Let me describe the whirlwind tour of doctors I had those first few days.  I went first to my primary care physician, Dr. J.  Dr. J was, literally, the family doctor.  When I was 16-years-old he was the doctor who diagnosed and treated me through mononucleosis.  He is the PCP for my father, my mother, my brother, my grandmother, and my grandfather.

I didn’t actually get to see Dr. J, though.  I saw his PA, Dorie.  When I was ushered into the exam room, she moved my long hair out of the way and immediately expressed surprise by the lump in my neck.

“That’s not normal,” she said immediately.  I quipped that I wouldn’t have come if this was a normal condition for my neck.  Dorie didn’t respond to my joking, though, and proceeded to feel the lump and noted that it was hard and solid to the touch.

She immediately left and pulled in another PA to examine me as well.  It was at this point that I started to think to myself that this was serious.  Carey was with me, though, and we both shrugged it off, foolishly optimistic, and kept assuming it was an infection.

I brought up the infection theory to Dorie.  She reluctantly agreed that it might be an infection, but she was worried that it was “something worse.”  I suspected that cancer was on her mind, but I didn’t want her to say it, so I kept insisting that it was probably an infection.   Cancer was just not an option for me.  I couldn’t imagine it.  I couldn’t conceive of it.

After Dorie confessed that she didn’t know what my lump was but suspected that it was something that needed immediate attention, she set me up with a CT scan at one of the local hospitals, about three miles from the office.  I describe the CT scan process in greater detail later in this book.  I had a number of scans and they were prime subjects for my blogs.

What I will say about this first CT scan, though, is that it was a terrifying experience.  Not because it was painful; it was not.  Not because it CT scans are radiation; I’ve had plenty of X-rays in my life and don’t fear them.

It was terrifying because for those few minutes when the scan is occurring I was utterly alone, lying on a table in the middle of a massive machine.  All I could see was the machine surrounding me.  All I could hear was the hum of the equipment.  All I could do was lie there and ponder the predicament I had suddenly found myself in.

It’s those times when you are alone that you really have to face your fears.  Without the constant stimulation of driving a car, talking to other people, reading a book, or doing busy work your mind if forced to consider the things you would rather not think about.

I found myself thinking, for the first time, that something was very wrong with me.  And that thought terrified me.

These other popular terms find their way to my blog:

• white bump on lip
• pet scan machine
• lip cancer photos
• mouth cancer symptoms
• cancer on lips
• fat lip
• signs of mouth cancer

I have been thinking about this lately.  My blog is known for many reasons – my political views, my fiction, my tongue-in-cheek editorials.  But the one I am most proud of is my cancer blog.  I fill a need there; many people find my website looking for cancer support and ideas.  And most people, strangely enough, come looking for signs of lip cancer.  And I have nothing to say to them – they read my blog about how I freaked myself out because I mistakenly thought I had cancer in my lips, and then they go on to the next site.

I’ve never had lip cancer.  I do know that over 20,000 people get diagnosed with oral cancer every year.  I, too, had oral cancer, but mine was in my tonsils and it spread (Stage III) into my lymph nodes.  About 15% of those diagnosed with oral cancer every year are diagnosed with lip cancer.  I know that there is usually no “early warning” for lip cancer – you usually find it because you get a sore that will not heal.

Some of the signs of lip cancer include (source):

• A sore on the lip or in the mouth that does not heal.
• A lump or thickening on the lips or gums or in the mouth.
• A white or red patch on the gums, tongue, tonsils, or lining of the mouth.
• Bleeding, pain, or numbness in the lip or mouth.
• Change in voice.
• Loose teeth or dentures that no longer fit well.
• Trouble chewing or swallowing or moving the tongue or jaw.
• Swelling of jaw.
• Sore throat or feeling that something is caught in the throat.

The good news is that lip cancer is treatable with surgery and maybe some radiation.  Only rarely is chemo required – usually when it is diagnosed in a really advanced stage.  Lip cancer can be caused by a number of factors and it can be difficult to attribute the cancer to a single cause.  The sun, smoking, heavy drinking, and the HPV virus are all associated with lip cancer.  And, strangely enough, being a man is a risk factor according to every website I read.

If you have found this website in a search to learn more about lip cancer, and are afraid for yourself or a loved on – please know that you are not alone.  Cancer is a disease we all have to face at some level in our life.  Don’t rely on the Internet, this website, or any “friendly” advice to help you self-diagnose.  Go to the doctor – get tested – and find out for sure.  Don’t let the Net scare you unnecessarily or give you a false sense of security.  Until you go to the doctor and get tested, you just don’t know.

It’s scary – but you are not alone.  And cancer is a disease that is easier to fight the earlier it is caught.  Don’t wait – call your doctor now if you are concerned.

Our reaction was, as you know, pretty dramatic.  We declared war.  We tightened our borders.  We geared up to fight, not a country, but an idea.  We called it the War on Terrorism and, for a short period of time, Terrorism had a face called Osama bin Laden.  Only, like cancer, terror is a hydra with many faces.  Chop off one and another appears.  The Taliban was the next face.  Then it was Al Qaeda as a whole.  Then Saddam Hussein.  Now back to the Taliban again.  Rinse and repeat.

Terrorism is the cancer of the world and we fight it the same way we fight cancer.  We seek it out.  We eradicate it and hope that not a single cell is left over to restart the cancer again.  We protect ourselves against future terror by strictly regulating what comes in and out of our “body,” our borders.  We change our behaviors so we don’t increase our chance of attack through slack attention to security.

It has left a scar on us as a nation – the smokey ruins of the Towers, now cleaned up but still a savage, ugly, scar across the face of America.  We live in a constant state of anxiety, afraid of a possible future, an eventuality that may or may not happen.  We fear another terrorist attack.  We strictly, and sometimes irrationally, attack anything that looks even remotely like terrorism.  We accept detaining or killing innocent people to cut the terror cancer from our lives – because they were close to terror but not necessarily of it.

We don’t look to tomorrow with hope, we don’t see potential and possibility behind every door.  Those days are behind us.  We are not so innocent anymore.  We don’t see the sun now; we see the shadows.  We don’t see the potential for gain, we see the possibility of harm.  We willingly give up our freedoms for the illusion of temporary security – because we are so traumatized by our firsthand experience with terrorism.

If terrorism is a cancer, then cancer is a terrorist – not in that it uses fear and terror as a means to accomplish a political goal, but the effects of cancer on a person are very much like the effects of terrorism on people and nations.  As a cancer survivor I live every day in a state of terror, uncertainty, and fear that I will get attacked again.  I alluded to it in my blog post titled “Living an Unbalanced Life” where I said I had “cancer PTSD.”

Like America, I have a scar from my cancer.  Numerous ones.  My most magnificent is a nice, long, 10-inch scar on my neck, which is now deformed because surgery was forced to remove some of my neck muscle to ensure we got the cancer.  Very much like being willing to detain or kill innocent people to ensure we get all of the terrorists.  I accepted this scar – the reality that I would forever compromise how people saw me – to ensure that the cancer was well and truly gone.  I accepted the fact that I would forever have a large scar on my abdomen where the feeding tube was inserted into my belly so I could eat while I dealt with the high morbidity of my radiation treatments.  It seemed a small price to pay, no?

I changed my behaviors as soon as I found out I had cancer.  I immediately started watching what I put into my body.  I stopped smoking my occasional cigar – one of my truly guilty pleasures that I enjoyed immensely.  I quit drinking caffeine.  I reduced the sugar in my diet – because cancer loves sugar.  I limited my sun exposure.  Again, this is very similar to America tightening borders, our no-fly lists, and our scrutiny of people and cargo coming in and out.  It just makes sense, right?

And now, almost 3 years later, I suffer from the trauma of my terrorist attack – of my cancer.  Every little pain I have I immediately suspect and it sends me spiraling into a “I have cancer” funk.  It could be a fat lip that I convince myself is cancer.  It could be a weakened gallbladder.  It could be a sprained shoulder.  I am so traumatized by my experience with cancer that I live in constant fear and I over-analyze every twitch, twinge, or rumble of my body.  I wake up every morning with a silent dread in the back of my consciousness, convinced that this is going to be the day I find out I still have cancer.  I roll out of bed, feeling at once so grateful I am alive and survived my cancer but also filled with a vague sadness and conviction that I am on borrowed time.

This affects my day-to-day living.  It impacts my happiness, by ability to be content, and my plans for the future.  It affects my wife, my children, my family, and everyone who comes into contact with me.  Similarly, America suffers.  We have terror PTSD as a nation.  We label, incorrectly, everything as terrorism.  We live in fear of a new attack.  We let it affect our daily lives and accept the misery and sadness that we give to ourselves – because we know we’re going to get attacked again.

Terror wins when we let terrorism or cancer change who we are

I’m not depressed.   I’m just filled with anxiety.  I dodged a bullet and it scares me to no end that there could be another cancer bullet out there with my name on it.  I hope there isn’t, but I must face the reality that it could be there.  I fear that if I get attacked again I won’t be able to dodge the bullet a second time and, more importantly, I am not sure I would handle a second attack as well as I did the first.  Now I know what to expect and I’m cringing, pulling away, even before the gun fires.

Is my fear unreasonable?  Is my anxiety unwarranted?  No; it is not.  Any cancer survivor reading this will attest to the fact that you are never the same after diagnosis.  Some primal innocence we didn’t even realize we still retained gets stripped away, leaving us raw and vulnerable.  What is unreasonable, though, is to let this anxiety and fear continue to adversely affect the quality of my life.  I have to come to grips with this new world I live in; I must accept it and live my life in spite of the uncertainty I now know is there.  If I cannot do it on my own, I need to seek the help of someone who can assist me in dealing with my fear and anxiety.

Terrorism is a cancer.  Cancer is a terrorist.  We must make sure that the cure does not kill the patient, and we must make sure that we find ourselves again when it is over – we have to enjoy our lives and start living again.  We cannot let the terror or cancer change who we fundamentally are, else the cancer or terror may as well have beat us.  We also cannot ever afford to be less vigilant – we must rise up and fight cancer and terrorism whenever and wherever we find it.  To fail to do so will eventually destroy us.

I went through surgery, radiation, and chemotherapy to rid myself of cancer.  We nearly killed the patient to cure the disease.  And the trauma of that haunts me to this day.  Moving on and reclaiming my life, becoming who I want to be instead of what the cancer forced me to be is hard, scary, and so daunting as to seem an insurmountable mountain.

It seems to me that America is not so different.

Steve Zlatkiss (far right)

Set your way-back machine to early 1986. I was sixteen-years-old and I had mononucleosis. I was a skinny runt of a kid who lost way too much weight from his sickness.

My mom went up to the local video store, 16,000 Movies, and spent an hour telling the owner about her son. About how great he was and how he wanted to work there so badly (I did – all the hot girls worked there) and how I would be there myself but I was sufferring from a terrible illness. After an hour of beating him down, he finally agreed to hire me, sight unseen – most likely to get my mom to stop pestering him.

The owner of the video store was 24-year-old Steven Zlatkiss. I went to work as soon as I recovered from mono and learned what it was like to work for the demanding cult of personality that was Steve Zlatkiss. I stayed with Steve until late 1995, when the company was sold to Blockbuster Video.

It was the most amazing ten years of my life. I slowly earned respect and Steve took me under his wing. He taught me how to manage the store, then the stores (which grew to 17 locations all around Florida before we sold). He taught me how to demand nothing less than excellence from myself and from others. He was there when I married my first wife – paying for the honeymoon because we were too poor to go anywhere. He was there when my oldest son was born.

He taught me how to play craps in Atlantic City. He taught me how to negotiate and be confident in myself. He showed me how attitude was 90% of every business transaction. He, quite literally, taught me everything I know about the business world – which is why I still get in trouble for being too aggressive or speaking my mind too openly from time-to-time. Because that’s how Steve was – he held nothing back and if you screwed up, he let you know in no uncertain terms, and then he helped you fix your mistake and move on.

Steve was the enemy of political correctness. When Mark, the first black guy started working at the store, complained that someone said he was a “raisin in a bowl of milk” as the only black guy, Steve laughed loudly and said “That’s fucking incredible!” And walked away.

Steve Zlatkiss

His point?  Without saying a word, Steve taught us to find the humor in the bullshit.  Taught us to be thick-skinned to a point, to deal with our own problems and not expect anyone to help us, and to recognize when someone was a friend and when they were not.  20 years later, Mark Vitela and I are still great friends.  Along with the rest of the crew who worked together at 16,000 Movies.

Steve recognized that I had a gift for computers and started me on my career.   After breaking the computers in the video store over and over again with my juvenile attempts to learn the system he finally gave up and sent me to New Jersey for training.  I took my first professional programming course at the age of 18 – thanks to Steve.  And look at me now, Chief Technology officer of a company that manages millions of dollars of government and private sector IT contracts.  Thanks to Steve.

When Steve got married, in grand Jewish tradition, I was there applauding him.  When his first son was born, I was there laughing and crying with him.  When his son, at 8-days-old, had his brit milah (Jewish circumcision ceremony) I was there, cringing and trying not to be queasy.

When I moved back to Orlando and had the opportunity to buy an established karate school and run my first entrepreneurial business, Steve seeded me the money I needed to get started. It took me almost six months to pay him back, and the venture failed, but Steve never even blinked as he handed me the money.  We had trust.  We had friendship.

A year ago, Steve called me and told me he had incurable cancer and that his doctors had given him only three months to live.  He was fighting it, he said, and it was going to be a cold day in hell (his words) before he rolled over and gave up.  Steve wanted to know about my cancer treatments and how I dealt with them.

We talked at least once every two weeks from that point forward.  Steve was strong – and he didn’t want to appear weak in front of me.  Those moment were reserved for his family I am sure.  We made many plans to grab a bite to eat or to visit, but his illness was slowly getting the best of him and each plan was cancelled because of his condition.   And because of his life – Steve was a very busy man and he never stopped making plans, scheming or cutting deals with people.  Getting time with Steve had always been, as long as I knew him, a difficult task.

Steve and Mark Vitela at Steve's party a couple of months ago

Finally, though, Steve threw a party at his house for all the ex-employees of 16,000 Movies.  Such was the power of Steve, so much love had he instilled in his “crew” that nearly 100 of us showed up for that party.  Fifteen years after the the last  movie was rented at 16,000 Movies, nearly 100 of his ex-employees, his friends, showed up to celebrate with with  him.

Steve was amazed at how many people were there to show him love.  He knew, but never really understood, how much of an impact he had on all of our lives.  He shaped us, made us into who we are today.  He was a father-figure, friend, and parter in crime and he left a deep mark on all of us.

As I left the party, Steve hugged me and told me he loved me.  That was the last time I saw him.

Steve passed away on December 23, 2010 at the age of 48.  He beat his doctor’s estimates by over a year.  He went to Israel for non-FDA-approved treatments.  He bullied the FDA into letting him legally try an untried and unapproved drug to fight his cancer.  He never gave up and he beat that cancer back much, much longer than anyone ever thought he could.

And so, yesterday, on an appropriately bleak and bitter day, we buried Steve at the Temple Israel cemetery in Winter Garden.  He was surrounded by so many loving friends and family that it was standing room only.  It’s been less than a month since I buried my mother and it was extremely hard to deal with a second death of someone so close to me on the heels of my mom’s death.

My mom, member 225 at 16,000 Movies, and Steve always shared a bond that began when she bullied him into hiring a geeky 16-year-old kid.  Steve never, not once in over 25 years, let a conversation end without asking about my mom.

I will miss Steve greatly – he made me into the man I am and for that I will be forever grateful.  Rest in peace, my friend.

Florida Hospital

I had my six-month PET scans this morning.  If these scans come back clean, I will officially be two years into remission.  I am, as you can imagine, terribly anxious to get the results.  I should get a call from my doctor’s office tomorrow with the result.  Until then, I will be one big bundle of anxiety.

The scans almost didn’t happen.  My cancer treatments have always been managed by the Florida Hospital Cancer Institute.  My health insurance is through United HealthCare.  For months, they have been in serious contract dispute.  Of course the dispute was about money and not the quality of the care patients receive.  How much can Florida Hospital charge for services to UHC?  How much will UHC actually cover?  Yesterday’s negotiated rates were up for renewal and each side was trying to squeeze the most out of the other.

If they couldn’t reach an agreement, over 400,000 UHC policy holders in Florida would be forced to pay out-of-network premiums for all services rendered by FL Hospital.

United Healthcare

The deadline came. . . and passed.  No agreement.  A 30-day extension was granted so they could continue negotiations.  September 14th, 11:59pm, was the new deadline.

My scans were scheduled for September 16th, 9:00am.  If the two corporations couldn’t come to an agreement I would have to find all new cancer doctors, not part of the FL Hospital network, to continue my cancer care.

Fortunately, the agreement was reached about 2:00am, hours after the deadline.  I was able to get my PET scans.

I blogged six months ago about the PET Scan Routine.  If you’re interested in exactly what happens when you get a PET scan, read that blog.

Anyway, I sure am glad that I don’t have to shop around for new doctors.  As most cancer patients and survivors can attest, we tend to form very personal and intimate relationships with our doctors.  Once you find a doctor you can communicate with, trust, and work with you tend to latch on and not let go.  Just so with me.

My doctors are fantastic:

Dr. Philip Dunn

Dr. Philip Dunn is my medical oncologist.  He coordinated my chemotherapy.  I see him every few months; he manages my blood counts, the thyroid issues that arose as a result of my treatment, and has the best dry sense of humor of any doctor I have ever met.   He was the first doctor to congratulate me after my first set of clean scans and looked me in the eye and said “We can go another 38 years without cancer in your body and I’ll be very happy.”

.

Dr. David Diamond

Dr. David Diamond is my radiation oncologist.  In addition to the 7 weeks of radiation therapy, he coordinated my entire cancer regime.  He is the central point for all of my doctors.  He scheduled my PET scans and compiled the notes from all the doctors.  He is the first person I call if I ever have a question.  He managed the morbidity of my radiation treatments, including the insertion of the PEG tube in my belly for nutrition when I lost the ability to swallow.  He is a great doctor and we chat about a lot of things every time I visit.  We had a lengthy discussion about the movie “Inglorious Basterds” during my last visit.

.

.

.

Dr. Henry Ho

Dr. Henry Ho is my surgeon.  Actually another doctor in the practice, Dr. Lee, was my surgeon but he moved to Texas and Dr. Ho picked up my care.  It was the office of Dr. Ho that first diagnosed me with cancer.  Dr. Ho has a very easygoing manner that makes me feel comfortable every time I visit him.  He checks my throat for cancer, inspects my entire sinus cavity, and coordinates with the rest of the team who handles my care.  I can’t say I have as close a relationship with Dr. Ho as I do with my other care providers, but that’s because Dr. Ho didn’t come into the game for me until I was already on my road to recovery.  Dr. Lee was my initial surgeon and was the doctor who started me on the road of cancer survivorship.

And that’s why it’s so important to me to keep my doctors, people.  I’ve been with Dr. Ho for over a year now, but he just isn’t as close to me as the others are.  Not because he is less of a doctor – in fact Dr. Lee told me time and again Dr. Ho should do my surgery because he was so much more experienced than himself.  I opted for Dr. Lee to do the surgery because I had a relationship with him and we had established trust.

The fear of losing my doctors has been driving me batty for weeks.  All of my doctors are part of the Florida Hospital network and I would have been forced to abandon all of the if the agreement hadn’t been reached.

I’m glad the dispute is over – but I am angry at the system that allowed over 400,000 people to get so close to losing coverage and trusted doctors.

We don’t stress overmuch about choking on our food because, if we chew our food well enough the food will be much less likely to choke us.

We tend to mitigate our fears of getting mugged by parking in well-lit areas, not going alone into unknown areas, and knowing the “good” from the “bad” parts of town.

In short, we can control things.  We can control our fate.  Right?  We can create the eventualities we desire directly through our actions and behaviors.  We have control.

I used to think that way, people.  I used to firmly believe that my willpower alone could affect the outcome of events and happenings in my life.  You can imagine how big my shock must have been when I realized that I control, literally, nothing.

That’s right – and it’s the same with you.  You control NOTHING.

Think about the scenarios I listed above.  No matter what you do, you can’t control the actions of others on the road, so you are always at risk for a fatal accident.  No matter how much or how carefully you chew your food you can still choke to death.  No matter how safe you think you are there is always a chance you will get mugged, or worse.

What can we control then?  We can control our own actions and behaviors, right?

Not really.  To an extent, but even those actions and behaviors are a factor of biology, evolution, genetics, and cultural upbringing – all things over which you have no control.   It takes a Herculean effort to overcome the “baseline” behaviors and actions that are ingrained into you.

You can’t even control your own body.   I know.

Cancer is the biggest reality check in the world.  Nothing brings home the fact that you have control over NOTHING like realizing your own body has turned against you and there is nothing, absolutely nothing, you can do about it.

Sure, there are things you can do to lessen your chance of getting cancer, but no one knows how much you decrease your chance.  You can eat lots of fruit.  You can not smoke.  You can make sure asbestos isn’t lining your walls.  You can avoid the sun.

All of those things might add up to keep you free from cancer.  But then again, they might not.

Once you actually have cancer, there’s nothing you can do to stop it.  Nothing.  Not a thing.  You can try positive visualization, prayer, changes in diet and exercise.  These things might make a difference.  But then again, they might not.

You cannot bargain with cancer.  All you can do is fight it as best you can.  Surgery, radiation, chemotherapy; these are the weapons at the forefront of the cancer battle nowadays.  They are by no means certain.  You can still lose the battle.

Anxiety About tomorrow Can Ruin Today

And you can’t control it.

So how do you deal with the knowledge that you control nothing?

Do you surrender?  Give up?  Say to hell with it, roll over, and die?  No.  You don’t do that – but the knowledge that you can’t control things gives you a certain sense of freedom.  When you realize you can’t control something you can choose to STOP trying to control that thing.

I can’t control whether or not my cancer will recur.  I can do certain things to mitigate my risk factors, but ultimately I have no control.  Living my life in fear of a possible eventuality is not an acceptable option – so I let go of the fear, I stop trying to control things I can’t control, and I live my life as best as I can.

I don’t always succeed.  Letting go is hard.  Especially in March and September of every year for me.   I have my 6-month PET scan coming up next week and my nerves are starting to get frayed as I worry about the results of the scan.

I can’t control what the results will be.  In fact, if I have a recurrence of my cancer it’s better to know as soon as possible, but the fear of the possible bad news is making me edgy, distracted, and a bit surly.

Next week I get my scans.  Wish me luck.  I’m having a hard time letting go this week.  I know I can’t control the outcome one way or another, but I keep looking for SOMETHING I can control – just to make myself feel better.

The thing is; I control nothing.   I have no control.