Paul's Heart

A Picture Is Worth A Thousand…Stares

This is probably the most recent picture of me that shows how “normal” I look.  Normal is in quotes because this is the outside presence of what everyone sees.  This was at a recent fundraiser for Lymphoma and Leukemia , of which I am a 24 year…soon to be 25 year… survivor of Hodgkin’s Lymphoma.

But underneath this outer shell, are many scars that show just what my body has been put through.

I do not normally give anyone an opportunity to see the various scars that I possess from head to toe.  Though some may have the attitude, “wearing these scars proves the warrior” I must have been.  And what was once just a reminder of what I have gone through, double in purpose as reminders of what might still be ahead for me.

Typically, the only giveaway that someone has gone through a battle with cancer, is the obvious hair loss.  But for many diagnosed before the 21st century, many of our diagnostics that we underwent, left us with physical scars, all over the body.  Myself, I have five scars from my diagnostic testing back in 1988 and 1989, but none so obvious as the one that spans my abdomen from my chest to just below my belly button.  For years, the only one who would even see that scar, would be my ex-wife.

But then, as I began having to deal with the ramifications of the treatments that cured me of my lymphoma, four more scars, the most notable, another lengthy scar, smack dab in the middle of my chest.  This came as a result of emergency open heart surgery to repair damage caused by extreme levels of radiation therapy.  Normally, this type of incision would travel the entire length of the abdomen and be called a “zipper.”  My “zipper”, along with the several scars from chest tubes have left me even more self-conscious about my physical appearance.

I do not like being the center of attention, in spite of the publicity I am constantly exposed to.  But living in the deep south as I currently do, I spend a lot of time trying to keep cool.  One of my favorite things to do, and pretty much the only exercise I am cleared to do, is walk.  I am lucky to live near a beach, so my walks are conducted there.  On very warm days like today, I will take that walk without wearing a shirt.  Which of course exposes the “battlefield” of scars on my torso.

My photo at the top of the story does not cause much of a reaction, whether I am at a public function, at the gas station, or the library.  But today, for whatever reason, a much more “touristy” day on the beach, I attracted a lot more attention than what I had wanted.  I could see their stares and then I have that awkward thought, should I stare back at them with the same mortified look?  Or should I just blurt out the answer to the question that I know they are thinking?  They will forget all about my appearance within a few minutes, but if I react enough to their stare, I know that they would not be able to handle what really was behind those scars.  Their reactions would probably be the same as the many I have heard from all the doctors and nurses that I have seen over the years during my survival, “he’s so young though.”

My age did not matter when I was diagnosed with my cancer.  My age did not matter when I underwent a double bypass caused by what I was treated with.  But what people need to understand, at least in my case, my scars are not just to my physical appearance.  Several of my scars still hurt years later, with the simple touch causing me to wince in pain, reminding me of what I have been through.  And with every reminder from my scars, the potential is quite real for even more scars.  Lack of knowledge of long term cancer survivors, left other issues untreated while performing the bypass surgery, leaving me with the need some day, to still need to be corrected.  And then of course, there is the continual deterioration of my body to begin with caused by the various late effects.

I do not normally spend a lot of time looking in the mirror, but following the stares I received today, I did take an extra moment to try and convince myself that the scars were not as bad as they appear to others.  But then I saw it, I saw something that I had really not paid attention to, in spite of it being pointed out to me years ago, when it was actually diagnosed.

This is clearly not what I look like.  I will be honest, I have never looked like that in my life.  However, I should have all the same muscles on my body that this “normal” male has.  I was told years ago, that I have suffered severe muscle loss over the decades from radiation damage from my treatments.  I used to think “wow, you can tell that just by looking at me?”  Today, because of other observers, I noticed it myself.  After I got passed my scars, I could see it.  I do not have full pectoral muscles (breast) anymore, seemingly just the lower half of each breast.  I do not have rounded shoulders, rather just chunks of muscle mass.  I have defined biceps and triceps but that is all there is to my upper arms.  And then, there is the muscle loss that I cannot see, those behind my back.  I am told of muscle loss in my shoulder blades that have to potential to lead to rotator cuff with any sudden torque of my shoulders.  And with the majority of the neck muscles in the back of my neck lost, as many long term Hodgkin’s survivors have something called “drooping head syndrome”, though fortunately for me, and only after repeated physical therapy to strengthen the muscles on the front of my neck, have I avoided this diagnosis.

Again, with my shirt on, no one will ever notice.  And of course, the snarky comments will come out, “just keep your shirt on then.”  It is not about the shirt.  And only if you have gone through what I and many others have,  can you understand it is more than just about the scars.

I thought I had done better with managing my reactions to the stares I get.  Maybe I underestimated myself.

A Fatal Flaw To Possess

You know the type of person… works all day, often without taking breaks. He will work until the job is complete.  She comes home exhausted just to take care of the home tasks, and hopefully will get some rest before the cycle repeats on the next day.  The work ethic is extraordinary, and usually commended by everyone.  We call that person dedicated, committed.  And because that person recognizes the admiration, the drive to continue the lifestyle grows.

A sense of immortality develops.  Nothing can happen, not because it will not, but because there is not time for it to happen.  When one task is completed, it just means the next task needs to be done.  These types of people are often referred to as “blue collar” workers because they know their livelihood depends on their completed work.  There is no safety net.  Their world cannot exist if they do not have this working characteristic.

I used to have that personality.  I was third generation in fact.  That is, until April 15, 2008.  Up until that date, I was working 50-60 hours a week at my full time job, all the while operating a very successful disc jockey business doing 3 to 4 gigs on a weekend.  I had to work like this to support my family.  The economy had already begun its decline, and like many families, we had financial issues.  My daughters’ pleas that they rarely got to see me at all because of my schedule fell on deaf ears.  I did what I had to.

I had so many people counting on me, my family, co-workers, and clients.  None could do without me, and so, I put my body’s limits to the extreme, and I was successful at it.  I had to be.  Failure to do so was unacceptable.

On that date in April, I had been sent to a cardiologist to deal with a chronic symptom that had existed for four months, a tightness in my chest.  It was a temporary thing, only lasted about thirty seconds to a minute at the beginning of a strenuous activity (which was pretty much what I did for a living).  The doctor came into the exam room, and informed me that I had some sort of blockage, but routinely said that he could fix me up with a stint or two, simply going through a catheterization up through my groin, and I would be up and going in days.

Thirty-six hours later I was on an operating table having emergency heart surgery for something nicknamed a “widowmaker”.  My mentality of working was so bad, that even as I came to in the ICU, tubes coming out from various locations of my chest, neck, and mouth, I was worried about only one thing… I had a wedding to disc jockey for in three days.  I was in a 24-hour watch period, most critical for open heart patients, but I was worried about my client and my business.  They could not do without me.

I was able to gain the attention of someone in the room, and they came over to the bed.  They could tell that I wanted to talk, and knew that I could not, so they did their best to keep me calm and coerce me not to speak all without getting upset.  But I needed to tell them something.  I grabbed her wrist, she looked me right in the eyes, and then I turned my eyes to our hands, which I now released and “pointed” with my finger towards the bed, and immediately began to spell out letters.

She knew I wanted to communicate something.  She asked me to wait, to allow her time to grab something to write with, and then I began to spell out letters with the motion of my fingers on the bed.

“I N E E D Y O U T O C A L L S O M E O N E F O R M E I H A V E A W E D D I N G T O D J O N S A T U R D A Y Y O U N E E D T O C A L L T H E M F O R M E A N D T E L L T H E M W H A T H A S H A P P E N E D T O M E”

And then, I proceeded to write out the actual numbers of my client’s phone number, yes, from memory.

From the intensive care unit, I was still trying to worry about my business.  I was worried that my client was not going to have a DJ for her wedding.  They could not do without me.  I was near death, but the world could not do without me.

My client was contacted and fortunately had enough time to find someone else.  They were also very understanding as to the situation.  But as admirable a quality it is to have, to be dedicated to your work or business, in my case, and like in so many others, it can be a fatal flaw.  My cardiologist told me, it was not a question of if I would die from a fatal heart attack caused by this particular blockage, but when.  It was bad enough that I waited four months to be seen by a doctor, all because everyone “needed” me and could not do without me.

The ultimate price of this thinking would have been my life, and the grief my daughters and family and friends would have to endure.

I thought that this incident would have changed my thinking, and initially it had.  I eventually phased out my DJ business, and reduced my overtime worked.  But in 2012, as our financial resources once again struggled, my “ethic” returned, and on three more occasions, I ended up back in the hospital emergency room, with two more life threatening issues, and one that was of great concern (another heart episode).

Never again.  Read my words.  I will never allow my body to be pushed again to these limits where my immune system ends up so depressed, that my heart is stressed beyond its already compromised condition, that my prematurely aged body will be expected to do things it should not, and cannot do.

I love my daughters too much to have them become fatherless.  Nothing, NOTHING is worth it.