Paul's Heart

Happy Thanksgiving

I will be the first to express that I do not get excited about the approaching holidays.  It is not that I am some sort of Scrooge.  But rather, I have had to deal with so many unfortunate circumstances around this time of year, I am almost fearful of what the holidays will bring.  In December of 1976, while celebrating my birthday, the house I grew up in suffered damage from fire.  Several years later, on a Friday the 13th in November, my mother and stepfather were in a car accident.  In November of 1988, I was diagnosed with cancer, Hodgkin’s Lymphoma just days before Thanksgiving.  In the mid-90’s my first ex-wife’s father was mis-diagnosed with Alzheimer’s Disease, an error that cost him four years of his life, all due to a medicinal error.  My stepmother was hit by a car crossing her street just days before Christmas.  And even recently, I am facing another issue, not health related for once.  You get the idea why I am not fond of this season?

But I have a wonderful Thanksgiving story to share.  In my decades of counseling cancer patients and survivors, no Thanksgiving could ever be as more meaningful as one family is about to celebrate.  Just over a month ago, this day may never have come for one cancer survivor.  Just barely finishing chemo, this young man suffered a near fatal side effect from the one chemotherapy drug, combined with another physiological issue.  What began as a simple and seemingly harmless cough, would worsen to the point that instead of waiting to go to the soonest doctor appointment four days later, a decision was made by one concerned mother, to take her young adult son to the emergency room.  The next six hours would turn into a nightmare as she would hear the words “code blue.”  The doctors were able to rescucitate him, but the news this mother would recieve would not be much better.  Her son’s condition was getting worse.  And as if it could not get any worse, the hospital was not equipped to handle such an emergency to the skill needed for this particular case.

He would have to be medivaced to the nearest facility that had the best chance to treat his condition.  This was a great distance away from home, which meant that they family had to travel, leaving their home behind for an unknown period of time, until they all could come home together.  Emergency surgery would be needed totalling nearly fourteen hours just for the one procedure itself, and several minor surgeries to make adjustments to his medical condition.  But that night of the surgery was no breeze either.  The following forty-eight hours would be the most important.

He is going to need long term care at home, something that is normally done by skilled and trained doctors and nurses, now to be done by his mother, and anyone else who may be trained.  I am certain this is not what the mother had dreamed of becoming when she gave birth to him.  But I am also certain that she is glad to have this chance to take care of him.

A month later, this story appears to be having a happy ending.  As I write this blog, this young man and his family, especially his mother are happy, nervous, and excited to be heading back home.  It will be a long ride home, as this time there is no helicopter transporting him.  I have taken that long ride home from a hospital myself, following my heart surgery.  A lot goes through your mind during that drive.  Gratitude is one of them.

No matter what I have gone through, I have two beautiful and wonderful daughters.  And I actually do welcome these holidays, not for me, but for them.  My ten year old still believes in Santa.  As our home deals with another seasonal struggle, I keep in mind the anticipation and excitement that my children have for these holidays.  But even more so, I will remember this Thanksgiving holiday as one family prepares to be thankful for the greatest gift of all, the life of someone so young, a true fighter and survivor.  If there were ever a definition of a miracle, you are reading about it right here.

No matter what holiday you celebrate during the upcoming season, my wish is that it be happy, safe, and healthy.  And to my young friend and his family… Happy Thanksgiving.  And Happy Thanksgiving to you all.

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.