Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Recreation”

20 Jan 2018
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A “Heartbreak” That Could Have Been Prevented… Again


If I told you that I had a lot in common with Tom Petty, would you believe me?  Okay, besides the obvious that he was one of the best rock ‘n’ rollers in music history.  Actually, I have a lot in common with many other musicians as well… Prince… Michael Jackson… Glenn Frey…

Petty, Prince, and Jackson all died as a result of medicinal use of drugs, in the cases of Petty and Prince, opioids.  Frey, complications of missed diagnosis because of a complicated health history.  The big difference between myself and these late talented musicians (besides the money), I am still alive.

We feel empowered when a celebrity has to deal with something we, as commoners have to face.  When something is of a rare instance, we hope that something good can come from the recognition of a celebrity dealing with the same issue, after all, paparazzi and the news, would guarantee the attention we need to get the help we need.

As many of our rock ‘n’ roll idols advance to retirement age, that is difficult enough to deal with.  But for many who reach this age, they have put their bodies through so much rigor over the decades, and for some, time catches up with them.  Some develop cardiac issues.  Some have orthopedic issues.  Years ago, Eddie Van Halen got major attention when he needed to have hip replacement surgery because of how much activity he spent performing.  And while there was always concern about “addiction” from pain killers, a decades-long concern, the actual term opioid, was not really pointed at.

But this is the reality.  Our government has failed to deal with the opioid epidemic.  In fact, our government has actually enabled the problem to continue, and to grow.  Big Pharmacy is also to blame.  Sure we want to feel better.  But there was a time, when we dealt with pain, without the increased risk of death.  And though there are plenty of options as opposed to Big Pharm profits from opioids, lobbyists convince our government to continue to keep this crisis, just that, a crisis.  And while our government and Big Pharm definitely deserve to have the finger pointed at them, there is one more finger to be pointed.  And sadly, it is at the patient.

As I say that, I am that patient that I am about to describe.  I have many health issues, cardiac, pulmonary, skeletal, muscular, renal, endocrine, gastrointestinal, and so on, more than a dozen diagnosis that I am being treated for.  When I met my physician at my long term cancer survivor’s clinic back in 2008, he made this statement to me.  “I cannot reverse the things that are developing with your body from your cancer treatments decades ago.  I cannot stop them either.  But what I can do, is help you to slow them down.”  By “slowing down,” he meant medication, physical therapy, and common sense.  For me, as Meatloaf sings, “two out three ain’t bad.”  To treat my physiological issues, I needed medicines.  To treat the pain that increased year after year,  I needed medications.  But the most difficult thing to treat me for, was common sense.

I had a wife, two daughters, and a home to support.  Often times, that meant working 50-60 hour work weeks, then working part time as a disc jockey.  Then there were the years that I campaigned for our local school board also.  Of course, there were duties around the house that needed to be tended to.  And also, taking care of other family members who would fall ill.  All the while, I would never miss a beat.  I took care of everything that I needed to.

But it came at a price.  My stress levels were at an all time high.  Pain from the progression of my skeletal and muscular issues became unbearable.  I developed insomnia due to the pain and the inability to get my brain to turn off at night from all the stress.  My doctors often described me as being too hard on my body.  I often thought it just meant emotionally, because admittedly, I refused to let me give myself any break or credit.  The doctors actually meant physically.

I began prescriptions for my heart and stress.  I was prescribed lower level pain meds, which rapidly progressed to the likes of tramadol, oxycodone, and fentanyl.  But as it was difficult to manage my pain, it was even more difficult to sleep.  Within 2 years, on top of everything else I was taking, I was taking the maximum dose of the strongest form of Ambien.  Those around me would often question how I was even standing, let alone dealing with the fog that was left for my brain to focus through.  But I did it.  And I did it well.

Tom Petty’s widow describes the unimaginable pain that the singer was enduring, just to keep going.  He had a bad hip, but had no time to deal with it.  To take time off would risk momentum and income.  Instead, he just kept piling on meds to deal with tolerance of drugs no longer working, and probably others to treat newer symptoms.  Petty’s situation is no different than my situation, or others that I have witnessed having to deal with.

What many people may not understand about fentanyl, in particular, the medication patch, placement is vital.  Too close to the heart can be fatal.  I found this out by mistake as the directions specifically state, “do not place in the same spot of application each patch.”  But nowhere did it state where not to place the patch.  Only by communicating with another survivor who found out the hard way, I learned not to do it again.

Being declared legally disabled due to all of my issues, and my former employer assisting me in this direction, my employer was no longer able to accommodate my restrictions as required by the American With Disabilities Act (ADA).  In 2012, I was sent to the emergency room 5 times, twice for cardiac related episodes, two for pulmonary issues, and one undetermined.  My body was only getting worse.  And no matter how much medications were being thrown at me, there was no end.  I was no longer able to do both, live the lifestyle I had and have quality of life.

I imagine that is where Tom Petty was in life.  And it has now been confirmed to have cost him his life.  Yes, the opioids were the main factor.  But it was also his desire to do what he did best, make rock ‘n’ roll.  I imagine that is also what Prince and Michael Jackson went through.  And now, reports are coming out, just how badly doctors dropped the ball concerning former Eagle Glenn Frey that eventually led to his passing.  Again, those of us with these unusual diagnosis to deal with, understand that all too well.

Please do not let Tom Petty be just another casualty of the opioid epidemic.  The loss is heartbreaking enough.

Posted in Cancer, Education, Inspired By..., Recreation, Side Effects, The Heart
15 Jul 2017

No Second Chance


It is something that happens all the time, whether married couple, a dating relationship, a sibling rivalry, or even a friendship.  People disagree, argue, or “fight.”  Under most circumstances, actually, hopefully, most of these situations resolve without any lengthy duration or any physicality.  As long as cooler heads can prevail, whatever the topic the disagreement is about, there should be a resolution.

For many, and unknowingly, there could be a time limit.  And there could be a permanent consequence involved.

There is an expression, “don’t go to bed angry.”

A news story from over the Atlantic came across my Facebook newsfeed.  A young couple, with three young children, had a fairly serious argument.  Unable to resolve it, the wife instructed the husband to find some space on their couch for the night.  A situation I am sure has played all over the world time and time again.  Unfortunately, the next morning, she found him the next morning, still on the couch, dead.  There was no foul play.  He had not committed suicide.

There are actually two stories here.  Though the news article did not articulate on the individual issues, just rather the potential cause, and the coulda-woulda-shoulda situation.  So, for the purpose of this post, I am going into the two issues, that possibly everyone reading this post may have been, or may just be in a similar situation.  My hope is that you take what I write to heart.

I first learned of the expression “don’t go to bed angry” more than two decades ago, in a very painful way.  I am not an angry or confrontational person, so it was not something that I had done or said in any of my relationships.  But one December night, my father and stepmother had been having an argument of auto insurance.  They still had some Christmas shopping to do, and right in the middle of this argument, they chose to continue it, while going shopping.  My father left the house ahead of my stepmother.  As he impatiently waited for her, he looked out his driver side window, watching my stepmother finally coming outside, cross the busy street, when suddenly, she was hit by a car.  Long story short, she survived, but suffered serious and life threatening issues, most permanent.  The only good thing for her, she had no recollection of the accident.  She also had no recollection of the argument.  But do you know who did?  Yes, my father.  He would never be able to resolve what happened that night, and would spend the rest of his life carrying the guilt of that night.  So, you see, you do not even have to go to bed angry to lose that chance at closure.

The father as young, only 36 years of age.  The wife was 31.  Together they had three young children.  As a family, they enjoyed doing things with each other, including family vacations.  And just with many families, work schedules play a vital role in allowing recreational activities as well as daily expenses.  But just how many hours per day, per week, per month, depend on your employment, and payroll.  A common argument, the wife complained about the long hours the husband had worked, many times working 16 hour shifts, seven days a week.  You may wonder how is this possible?  Simple, you can either work multiple jobs, or certain employers may offer overtime.

Again, this is a situation similar to my own personal experience.  I am “blue collar” by nature.  Definitely not afraid of working.  At one point in my life, I had been working a full time job, two part time jobs, all while attending college full time.  It was a ridiculous schedule, but when each job was only minimum wage, I did what I had to, to survive.  But later in my life, I was fortunate to land a job that would afford me a salary three times what I had ever made.  Along with that, I would have an opportunity to make overtime.  I saw this as a chance to really make a change in my life from a financial standpoint.  I would often find myself working anywhere between 60-70 hours per week, just so that I could provide nice things for my family, house, car, vacations, etc.

Getting back to the family overseas, their argument had good intentions.  There was clearly concern by the wife.  The husband had come home that evening, as she described him, in the worst shape she had ever seen, from an exhaustion or completely fatigued state.  Every year he had taken the family to Disney, but he was working to take his wife on a special anniversary trip to Prague.  Frustrated by his stubbornness not to take it easy and give himself some rest, she told him to sleep on the couch.  His body could not take the physical abuse any longer.  He died overnight.

Since my diagnosis with Hodgkin’s, my body has sent me three different warnings, that only when I got hit with the 4th warning, I finally listened.  I had cardiac issues that I was aware of for four months, but was more concerned with not missing work.  I was diagnosed with a widowmaker blockage, meaning,  I was going to have a fatal heart attack any moment.  But I kept working.  Then, several years later, not learning my lesson, I ended up back in the emergency room, having run myself down so hard, my body went into full blown sepsis, again, having no warning, other than when my body finally decided it had enough.  Nine months later, another episode with sepsis, promising myself, I would no longer do that schedule, but the pressure to provide the things my family I had always done was immense.  Three months later, another cardiac episode hit, and that was the end.  I was lucky.  I got the chance.  This other Dad, did not.  Like me, all he wanted to do, was provide nice things for his family.  We all want that.

But the human body is not meant to be pushed to such extremes.  The human body is not meant to be starved of nourishment and rest.  The human body is not meant to be abused, intentionally, or in the case of health issues like I have that result from long term effects of cancer treatments.  The body will only last so long.  And while concern may be expressed, if it is dealt with in anger, painfully as this young couple found out, the argument is what the widow will never be able to forget.  There is no second chance.  Once the words are out, the damage is done.  Once the body has suffered to the point of exhaustion, the damage is done.

Ideally, it would be perfect if we did not feel the need to pull the hours that need to be worked.  But no one should ever be faulted for wanting to be able to do the best we can for our families.  But there also needs to be understanding when we can no longer perform at that level, and be able to adjust.  Otherwise, there will be more unhappy endings such as this family must now endure.

Posted in Cancer, Education, Family and Friends, Inspired By..., Recreation, Side Effects, The Heart | Leave a comment
18 May 2017

My Biggest Fault – I Cannot Grieve


Something happened when I was twelve years old.  It had an dire impact on me, changing my life forever, and how things affected my life.  Combined with future events in my life, this “defense mechanism” that appeared, was then complicated with PTSD (Post Traumatic Stress Disorder) and what is commonly referred to in the cancer community, “survivor guilt.” For those that know me, have seen the late effects of this issue, and for those that have only seen the effect of those events, are often left to shake their heads in wonder.

I have no emotions.  Well, not exactly none.  But when it comes to crisis and tragedy, I show nothing.  I cannot explain why.  And I know it is not healthy.  While from an emotional standpoint, it is clearly not healthy, situations that I have been involved with, not dealing with emotions allow me to process things more clearly, logical if you will.

That winter, I had just turned 12 years old.  And just days later, in between the Christmas and New Year’s holidays, I would lose three close relatives.  It is hard enough for a child to deal with the death of one relative.  But three in less than five days, with subsequent funerals, were definitely overwhelming for me.  And no one could see it.  From that point on, “death” was just something that happened.  We move on.  I do recall crying at the first funeral, confusion during the second.  But by the third funeral, I felt nothing anymore.  This defense mechanism was firmly in place.

I will say that this defense mechanism has been pivotal however in certain situations of my life.  But by the same token, the price my health has paid, both emotional and physical, has been high.  Relationships.  Stress.  Guilt.  Physiology.  I am riddled with scars.

When I was diagnosed with Hodgkin’s Lymphoma, that very defense mechanism left me no room to believe nothing less, than I would be cured.  Any negative possibility.  The barbaric testing and treatments would not deter me.  I was not scared.  I was not sad.  Sure, I dealt with some initial anger at first, until the mechanism kicked in, reminding me that I needed to be focused, to get through this.

Years later, one of the most influencial people in my life passed away, following her diagnosis with a second cancer to have dealt with.  With no emotion, I concentrated on getting my grandmother all of the help she could get, because I believed just as the first cancer she dealt with, we needed to stay focused on what needed to be done.  Unfortunately, she knew something I did not, and that was by design.  Her cancer was terminal.

The thing about my grandmother, she taught me, “take care of others before yourself.  Do not be selfish.  Be selfless.”  The day before she died, I actually visited with her.  Something was not right.  She did not have her focus as I had seen other days before.  She did not talk about what was on her mind, other than she was to start chemo in two days.  She had even gotten her hair cut short to prepare for the eventual hair loss.  The next day,  I got a phone call that she had been taken to the hospital, for fluid in her lungs.  I knew this was not a good thing, and I urged her that I would be on my way.  However, she knew that I was working with a group of children in our church youth group.  She knew what I was doing was important to the children, and important to me.  And this made her feel good.  She told me, my place was there, and she would be fine.

And so, I went through the day, figuring I would just go straight to the hospital after the event.  Instead, a phone call came to the church, answered by one of my assistants.  She was in tears as she handed me the phone.  I do not even remember the conversation.  I know that my grandmother had died.

That mechanism was now working very hard to squash the grief of the greatest loss I had experienced in my life.  I hung up the phone.  Walked passed my assistant, who I remember telling me, that she would handle everything.  Yet, I ended up back with the children, and at the conclusion of the event, went to the hospital.

This issue that I have, would become an even stronger force, as friends and relatives came to the funeral.  Sure, I heard all kinds of wonderful stories about how wonderful she was, and what myself and her other grandchildren meant to her.  Not one emotion.  Instead I was focused on how I was going to get on in my life without the person I considered my “moral compass.”

Several years later, this issue would be recognized again, but this time for the good.  My first wife had been in a head on car collision.  Of course I was attending another youth event that I was running.  But this time, my advisors insisted I leave.  I arrived at the hospital to hear everything that was going to be done to save my wife.  After talking to the doctors, my attention turned to “what’s next?”  I had to contact my employer, her employer.  I had to get to what was left of the car and see if I could get her belongings.  But when I saw the car, my focus was even stronger.  I pulled out my camera and not only took pictures of the car, but then travelled to the accident scene and took more pictures.  It was good I did.  The driver that hit my wife, was uninsured.  And those photos would be used in court.  Of course there was nothing but focus on my wife’s recovery.  My mother made the comment to me, “I don’t know how you are holding yourself together.”  Because I had to.  I did not reach out to anyone for help.  There was no time to be upset.

Unfortunately, these types of scenes would pop up again and again, complicating my PTSD and survivor guilt.   But by the same token, it is what got me through my most difficult times.

And with that, my biggest fault.  I do not show my emotions.  I do not release my emotions.  I do not grieve.  For over thirty five years I have been this way.  I am not proud of this “coldness” I present.  But when this defense mechanism continually assists me to get through every crisis and tragedy I face, I cannot fault this mechanism.  Many, if not most would strongly feel that the way that I deal with things is not only wrong, but unhealthy.  And therefore, jump to their own conclusions and alternative theories as to why certain things play out with me the way that they do.

At this time of year, I am reminded of one of my most painful moments, facing yet another tragedy.

2013 was a horrible year for me, but 2014 would prove even worse.  And in late May, my father’s health would turn rapidly, as he struggled against lung cancer.  At the same time, I was dealing with health issues of my own.  And I was dealing with issues surrounding my divorce to my second wife.  As my father’s health began to fail, as my closest confidante, my dad knew everything that I was dealing with.  But once he was declared terminal, I stopped burdening him with most of everything I was dealing with.  But there was one issue that cruelly, was going to be my most difficult matter yet.  Much too lengthy to explain in full detail in this already lengthy post, due to one of the legal issues concerning my divorce,  I was not only faced with the possibility, that I would not be there when my father would eventually pass away.  And that is exactly what happened.  I was only able to stay with my father until the last possible minute, by his death bed, where if I chose to ignore what needed to be done, I stood the extreme possibility of facing legal sanctions.  I said “goodbye” to him, knowing full well, I would not return in time before he passed.  No emotions involved.  I did what I believed I had no choice to do, and my father previously had discussed the likelihood of this situation with me.  The phone call came several hours later.  He had passed away.

These are just some of the situations that I have dealt with over the decades.  Some, have been within my control, and many have not.  But this defense mechanism that remains strongly entrenched in who I am, is what gets me through every day, staying focused on what I need to do, to make sure that things are done, and done correctly.

Perhaps someday, that day will come, that I can mourn.

 

Posted in Bullying, Cancer, Education, Family and Friends, Inspired By..., Recreation, Side Effects, The Heart | Leave a comment

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