Paul's Heart

Life As A Dad, And A Survivor

There Is More Than Meets The Eye

“There is more than meets the eye.”

“Don’t judge a book by its cover.”

“Looks can be deceiving.”

“Things are not what they seem.”

There are any number of expressions that teach us, that what we see in front of us, might just be an illusion.  Sometimes it can set us up for failure.  There are times when it gives people a false sense of security.  Add in ignorance, and appearances may just have an opportunity to be fatal with consequences.

I have never been comfortable with my photo being taken.  But if you see my pictures, you will only see me as I am right now, healthy.  I never allowed pictures to be taken of me when I was battling my Hodgkin’s Lymphoma.  I did not want any reminders of when I was sick.  I never wanted anyone to see me in that condition.  What you see of me in photos is exactly how you see me if you passed me on the street.  That by first glance, I am a healthy looking twenty-nine year-old.  Okay, I am forty-seven.  But with my goatee shaven, I can pass for twenty-nine.  I really could.

But the truth is, my body has betrayed me.  It did not betray me with my cancer diagnosis.  That could not be helped.  But the reaction my body had to the various things that had been done to me, from surgeries and treatments (both radiation and chemotherapy), like so many other people, caught everyone off guard.  In fact, other than the initial stereotypical side effects, and the lack of a follow up protocol for someone to survive cancer longer than five years, there was no reason to suspect the time bomb that was ticking inside of me.  Or how many time bombs and booby traps there were.

And up until this point, or rather five years ago when the shit hit the fan, no one had any idea what to keep an eye open for.  Cancer patients by society’s measure were only hoped at best to live five years.  Every cancer patient and survivor strives for that “magical” five year mark.  During those first five years of survival, I was followed closely, but only for my Hodgkin’s to return.  Follow up exams went from once every three months for the first year, to once every four months for the next year, then it was every six months for two more years, and then, for the big five year mark, I was put on annual visits.  But again, my oncologist only examined me for my Hodgkin’s.

Everything had gone well.  No relapse.  In my seventh year, I moved from my current residence, and though I notified the oncologist, for some reason, I no longer got my “reminder” post card telling me I was due for my annual follow up.  Yes, the obvious, I should have made the call myself because it is my body.  But that was just it, my body was great.  No lumps or miscolored shapes.  No fevers or night sweats.  All the things he looked for.  Surely I did not need to pay him for that which I could do for myself.

And so I muddled through the next ten years and more.  No problems.  I gained some weight I had not planned on but nothing I was concerned about.

If you have read through my blog, you can see that this “blind” living of mine could have cost me my life.  But was it really my fault?  The doctors used toxic chemicals and deadly radiation to cure me of one deadly issue, only to face another.  Was there anything to really be concerned about?  I looked in good shape.  No one could ever tell I had cancer.  Looking at me, there was no way to know I was about to drop dead of a major heart attack.  I was only 42 years old.  I had a full head of dark brown hair (no gray).  I was fairly fit, and generally walked around with a smile.  My attendance record at work was pretty much spotless.  That is why it came as a complete shock when my co-workers had heard the news that I had just had an emergency double bypass heart surgery.  This goes beyond not having had a protocol for following patients up long term, as in for the rest of their life for all the possible side effects that could develop.  But unlike today, back then, cancer patients were not studied for long term survival as they are today.  Now doctors follow up patients forever.  Or rather as long as the patient is compliant, which personally, I am proof of why you need to follow up forever.

So, we now know to follow up cancer patients for the rest of their life.  The NIH (National Institute Of Health) just published a study, that perhaps cancer patients need to be followed up a lot more frequently for severe issues like cardiac and pulmonary.  Face it, my left main artery had grown scarred to the point of being blocked 90% until I finally dealt with the main and obvious symptom.  But guidelines known today, had I gone through annual echocardiograms twenty three years ago and every year after, this condition would have been caught years ago.

But is it enough to follow up patients once the treatments are done?  As any cancer patient will tell you, prior to each treatment, our blood counts are checked.  Following the treatment, our blood counts are checked.  For some chemo drugs, the main concern is about the heart, so you undergo tests to make sure your heart can take the drug, and then after treatments are over, your heart is checked annually for any developments.

I have a young friend who had just completed his chemotherapy for Hodgkin’s Lymphoma, and he was given half of the chemotherapy drugs and dosages that I was given.  He did not go through radiation, nor any of the diagnostic surgeries I went through.  He got through his treatments in textbook fashion.  So imagine the shock of his parents, when barely two months later, his mother would take him to the emergency room for a chronic cough that was getting worse.  Later that evening he would code blue.  They revived him and then medivaced him to a heart that specializes in heart transplants and other surgeries.

Doctors had discovered that the one chemo drug, an anthracyclene, which effects the heart, had done just that.  The drug had destroyed the muscles of the left side of his heart and it was no longer pumping at a sustainable level.  Doctors had to put in a pump to assist with this, and for now, this is how my young friend will live the rest of his life.

I cannot help but wonder, had the doctors followed up his heart, like they did his bloodwork, the doctors would have seen the developing damage being done to his heart.  While the chances of this severe a side effect are rare, my argument is that if it could have been discovered earlier, his treatment could have been modified to lesson or even eliminate this particular side effect.  But instead two parents were forced to hear the words “code blue” and know it was their son being talked about, and then forty eight hours later be told by a heart surgeon, “we did everything we could, but your son is very sick.  We just don’t know if he will make it.  It is not good enough to follow up us long term, it is not good enough to schedule for an annual follow up after the last treatment ends.

I know what I am stating, there will be critics who complain, “but this is going to drive up health costs.”  I am sorry, but explain health costs to parents whose son has face three life and death situations.  Who are we to determine who gets the right to live or die, let alone the life of someone so young.  The last picture I had seen of him, he looked great.  His hair had begun to grow back, his energy had begun to recover, appetite was back to normal.  To look at him, no one had any idea that my young friend would have to fight for his life for a second time in less than one year.  The first fight from betrayal of his body, the second fight from the treatment that saved his life from that first fight.

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One thought on “There Is More Than Meets The Eye

  1. It’s so irresponsible of doctors to treat this way! Makes me so angry.

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