Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Education”

29 Jan 2018

Does It Really Make A Difference “How” or “Why”?


Surely it has happened to you at some point in your life.  You spill a drink, and not just any drink, but one that will leave a huge and permanent stain, and definitely only get worse the longer it sits.

There are all kinds of hacks to clean up a spill that will cause a stain.  But they all rely on how quickly you respond.  If done immediately and correctly, perhaps there can be nothing noticeable remaining.  As the liquid sits, the stain will become more difficult to deal with.  And of course, to do nothing, well, say goodbye to the carpet then.

This is not just a metaphor.  This is a life saver.

Do you stand there and wonder how it happened?  Why it happened?  What you could have done differently so that the drink would not have spilled in the first place?  Does it really make a difference once it has occurred?

I was 22 years old when I was diagnosed with Hodgkin’s Lymphoma.  To my knowledge, I am the only person in my family history to develop this type of cancer.  I had five other family members who had battled a different form of cancer, all have passed away.

I am on several social media pages for cancer as well as life after cancer.  Usually two or three times a year, a discussion comes up wondering about the cause of Hodgkin’s Lymphoma.  While we know there are hereditary possibilities with certain cancers such as breast cancer, dietary influences when it comes to colon cancer, and of course smoking linked to lung cancer, there are no confirmed actual causes of Hodgkin’s Lymphoma.

There are similarities however, amongst many of us, in regard to our health histories that should not be ignored.

Please read this next sentence carefully, very carefully.  Most of us who have had Hodgkin’s Lymphoma at one time or another, dealt with the Epstein Barr virus.  THIS IS IMPORTANT!!!  This does not mean that everyone who gets EBV will get Hodgkin’s.  Like the lesson taught in school, “all mammals are animals, but not all animals are mammals,” the same applies here.  I have never been tested for the Epstein Barr virus, and with my Hodgkin’s having occurred almost 30 years ago, if I got the test done, I am pretty sure I would test positive for having had it.

But the EBV does often lead to another illness, mononucleosis, “mono.”  And again, though just as prominent among Hodgkin’s patients and survivors, many of us have had mono, though not as numerous as just having EBV.  Now the same rule applies as with the EBV, not everyone who gets mono will develop Hodgkin’s.  And considering how prevalent a diagnosis of mono can be, Hodgkin’s is considered rare with an average 50,000 diagnosis each year.  So, sadly, at best, EBV and mono appear, or are at least looked at as just coincidences.  Just as a matter of fact, I was diagnosed with mono at the age of 18, four years before I was diagnosed with Hodgkin’s.

Agent orange is a mixture of an herbicide and chemicals, most popularly used during the Vietnam War, having exposed so many to its toxicity.  And for several long term survivors of Hodgkin’s Lymphoma, another similarity, from exposure.

Then there are also conversations about “clusters” or “hot spots”, locations with higher incidents of diagnosis of Hodgkin’s Lymphoma.  In my early days of survivorship, I had first learned of this situation, concerning areas of Ohio.  I have since learned of other areas, from Los Angeles to Ohio to New York to Norway.  Again, there seems to be a causality due to exposure to chemicals such as Benzene.  There are many of us who lived near Three Mile Island (though I know some who lived closer to TMI than I did when the crisis occurred back in the 1970’s) so radiation is yet another coincidence.  I had even seen reports narrowing down a cluster to a particular high school.  But in the end, these are all just treated either as numbers, or coincidences.

Ultimately, if I really wanted to pinpoint anything, especially with Hodgkin’s being a cancer of the immune system, I would point a finger at stress, not necessarily as a cause, but definitely a trigger.  Like many other things I have had to deal with medically, my events were all preceded by higher amounts of stress than normal.  And what effect does stress have on the body?  It lowers the immune system’s ability to respond and defend.  At the time of my diagnosis, I could not have been under more stress – a challenge I would well exceed fifteen years later.  But again, I want to stress, no pun intended, stress does not mean you will end up with Hodgkin’s.

In the meantime, for those of us in this world of Hodgkin’s, are you letting that “stain in the carpet” sit longer, or have you just taken care of it and have moved on?  To obsess about the “how” or “why”, especially in the beginning of the Hodgkin’s journey can cost valuable time in regard to treatment.  And as most of us HD survivors will tell you, time is critical in treating Hodgkin’s.  And to obsess about the “how” or “why” in survivorship, will only mean that we are not paying attention to the things around us that should matter more.  Sure, it would be nice for closure, to have the “a-ha” moment that we could tie our Hodgkin’s to.  But in reality, I do not see this in my lifetime, which I am hoping for another 30-40 years.

 

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment
25 Jan 2018
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Defining Insanity – Why Do We Still Do It?


I cannot name the author of the following expression, well, because it is just too confusing.  Rumors attribute to Einstein, Ben Franklin, and others, depending on who you wish to give the credit.  But as argument to who the author is does not change the quote.

“The definition of insanity, is doing the same thing, over and over again, and expecting a different result.”

For decades, this is exactly what we, as a society have been doing the same thing over and over, and expecting different results.  School shooting – express shock, pray for victims, forget.  Teen suicide – express shock, deny signs that might have prevented, pray, forget.  A trusted staff member violates children sexually – express shock, deny, forget.  All three of these issues have been in the spotlight recently.  I have written many posts about all of these issues.  Sadly, my posts prove the point about defining insanity.

12 year old Gabriella Green hung herself January 10th of this year.  One fellow teen decided to trash Gabriella on social media with horrific rumors and innuendo.  Devastated, she expressed to another fellow pre-teen, she had tried to kill herself, to which her “friend” told her over a phone call, “just do it.”

Bailey Holt was just 15 years old, before she was killed (along with another 15 year old student) and more than a dozen injured after being shot, in school by a fellow classmate.

I am posting the picture of the judge in the case, as opposed to the 150 victims of a sexual predator, a once trusted staff doctor of several sports programs including Olympic athletes.  During sentencing, which the perpetrator received over 175 years and is not eligible for parole for at least 90 years, the judge expressed, “I just signed your death warrant.”

All three situations, it is the same thing, over and over, and yet we expect different results.  This is insane.  Innocent children are dying, or at the very least, having their lives destroyed, because we cannot come up with anything better than the usual, express shock/pray/move on.

We have to start someone.  Parents need to be in control of their childrens’ social media if they are going to allow their children to be on it.  I am a firm believer in allowing my daughters, who happen to be similar in ages to victims in all three of these situations, to have certain freedoms, but given the atmosphere, and the reluctance of entities we trust with our children to protect our children, I still, as a parent have to be that first line of defense.  I do not believe my daughters to be on social media (actually neither has any interest in it currently), but when they do decide to engage, I want their user name and password.  At least until they are 18 years of age, that is not only my right, but my responsibility.  Gabriella and so many others may have had help to deal with their angst instead of feeling isolated and hopeless.

As for the school shooting, I am tired of the argument from both sides, “need common sense gun control” or denial from our representatives of government or the NRA.  The fact is, neither give a shit that we now have school shootings nearly once every week.  We are supposed to believe that our children will be safe in school.

I graduated in 1983.  Shortly after that, police officers were soon being used in the schools, as well as metal detectors.  As an alumni of one of the first schools outside of a major city to use these options, it was embarrassing.  But seriously, a government that will not do anything, and most school districts more interested in protecting the rights of the bully over the victim, what other options are there?

And how many people knew about this monster, trusted to treat student athletes only to sexually violate them, and did nothing.  Yes, it is a double edge sword.  Yes, the whole “innocent until proven guilty.”  Yes, the whole “turn your back for the good of the program” or “if you want your success, you will stay silent.”  These horrific acts were committed against these children, and those who needed to protect them, turned their backs.  And just who else might have known this was going on and did nothing?

As far as I am concerned, if you know something is a possibility, and you do nothing to voice that concern, you are complicit, allowing the action to commence further.  Just because it has not happened to your child, does not make it okay that you did not speak up.  Again, having two daughters the same age as the victims in all three of these scenarios, this hits real close to home.  I have many friends who have lost children, permanently, witnessed their never ending grief.  And I am sure they would say the same thing, to do nothing is to take their lives, if at the very least, their innocence away.

If you suspect something, address it calmly, rationally, and legally.  At the very least, you put the possible perpetrator on notice.  But to do nothing, someone vile who is actually continuing their abusive acts, will only keep at it.  And that is what would make you complicit.

All three of these situations could have ended differently, but instead, our society keeps doing the same thing, over and over again.  Youth suicides.  School shootings.  Sexual abuse by those in positions we trust – coaches, doctors, clergy, teachers, etc.

It starts with a communication and involvement.  Be involved with your child’s life.  Make sure that your child can come to you and confide in you.  Make sure that your child knows that you will protect them.  And then back that with actions.

Posted in Adoption, Bullying, Education, Family and Friends, Inspired By..., Politics
20 Jan 2018
2 Comments

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

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