Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “The Heart”

Understanding Epstein Barr


 

No, not this Epstein Barr.  This one.

I first heard about Epstein Virus over five years after I had been diagnosed with Hodgkin’s Lymphoma.  What does one have to do with the other?  Well, medicine and science are beginning to catch up to those of us in the Hodgkin’s world.  What do I mean?  Almost 30 years after I had been diagnosed with Hodgkin’s, often considered a rare form of cancer, though possessing a very strong remission rate of over 85%, a cause behind the diagnosis, still eludes the oncology world.  Unlike my father, who died from lung cancer, although in denial, knew his cancer was caused by over 50 years of smoking.  But Hodgkin’s, still unknown for sure.  I am the only member in my family to have faced Hodgkin’s.  Blood tests and scans did not diagnose my Hodgkin’s.  There are no warnings for Hodgkin’s.  Well, maybe there was.

In recent years, and perhaps spearheaded by other fellow lymphoma survivors, a common thread has been discovered among us, that medicine is finally recognizing… most of us had a history of Epstein Barr Virus.

DISCLAIMER!  What I am stating is NOT everyone who has EBV will develop lymphoma.  If that were the case, the frequency of EBV, would make Hodgkin’s one of the most common cancers among breast and lung cancers.  But Hodgkin’s is not that common.  However, the knowledge that Hodgkin’s patients may have had EBV in their past, cannot be ignored.

Symptoms Of EBV

Common signs of EBV are excessive sleepiness, fevers, headaches.  These are among some of the noticeable symptoms which could come across as anything.  But upon further examination by a doctor, body functions of the liver, spleen, and lymph nodes may raise some flags for further testing.  There is no vaccine, and is simply spread by saliva.

Over It, Or A Precursor?

EBV is actually quite common especially on younger individuals, especially youth.  Why?  Personal care.  Hand-washing not always done.  Sharing food or drinks.  And for the older youth… kissing.  And most just get over it with some TLC and other home remedies.  Your body does what it is supposed to, and build antibodies.  But others, perhaps will develop further issues, like mononucleosis (mono, a.k.a. “kissing disease).  Important note, EBV and mono are not the same diagnosis.  Mono is caused by EBV, not the other way around.  Here is where I come in.

Out Of Nowhere

I was out of high school about a year, burning the candle at both ends.  And then one day, I could not get up.  I could not wake up.  I could not sit up.  I could not stand up.  Blood tests would show that I was having some sort of liver related issue, and yes, signs pointed to mono.  I was not checked for EBV, but the mono diagnosis was pretty much a certainty.  I recovered in time, and really do not remember much of the duration.  But in November of 1988, I had no idea what this diagnosis might have just meant to me.

A Little Knowledge Should Be A Good Thing

So there are issues later on that there is an increased risk of further complications from EBV, and not just Hodgkin’s.  Again, I want to stress that a diagnosis of EBV means you will develop anything in the future, but had I been aware of the connection between EBV and HD, when I went to my doctor, with a swollen lymph node, and misdiagnosed with a “cold”, a known history of EBV and the connection, my doctor should have ordered further testing.  But Hodgkin’s is not only rare, and sometimes difficult to diagnose.  And that is where this little bit of knowledge could come in handy.  If you are known to have had EBV, and have  a medical issue that is difficult to diagnose, your doctor should consider eliminating a diagnosis of lymphoma.

But besides lymphoma cancer, there are other things to be aware of.  EBV can lead to future issues with the spleen, the liver, cardiac, breathing issues, and blood disorders, and yes, cancer.   Oddly, nasopharyngeal cancer is rare, it is common among cancers in China.  There is a proven genetic connection.

So How Do You Deal With EBV?

Besides being diagnosed properly, there is not much that can be done, except for two things.  Prevent spreading this very contagious virus.  And second, follow the doctor’s orders in regard to rest, fluids, perhaps pain meds or any other prescribed medicines.  The contagious period lasts up to two months, and recovery simply takes time.  But being aware of your body, can help you ask questions that may come up in the future, even if your doctor does not know what to look for, now you do.

The Difference Between Being Positive And Being Oblivious


We are now almost two weeks into the aftermath of Hurricane Irma.  Anyone who has gone through any kind of crisis, will tell you, recovery does not happen overnight.  And it is becoming clear, just how valuable experience is.

Throughout my life, I have often been told I have a “bad” or “poor” attitude.  In fact, nothing could be further from the truth.  I believe I am one of the most positive people you will ever know.  Sure, I have dealt with a lot of bad experiences over my life:  cancer, car accidents, severe illnesses, divorce, hurricanes, etc.  And it is because I have gone through so many bad experiences, I get told I am a “negative” person.  I write stories to help others who have struggled with similar situations, and I am told that I “need to get over it.”

Many years ago, a book called “The Secret” came out, as well as a movie.  I have read and watched both.  To sum up, if you think bad things, your thoughts travel out into the universe, and come back to you in actions.  Think good things, good things come back.  Some people rely on a similar method called prayer.  Pray for the things you want, and they will happen.  If they do not happen, then your faith obviously was not strong enough.

Seemingly just as effective an approach, albeit in the opposite direction is a book by Mark Manson, which I have recently started reading.  Instead of taking a positive approach through life, just stop giving a fuck about it.  Trade Pollyanna for apathy.

I definitely do not wish any ill will on anyone.  But I definitely feel bad for those who end up unable to deal with difficult situations when they occur, when they realize all the “positive” thinking and believing, still disappoint them.  Shit happens.  But if you do not pay attention to how others deal with adversity, when something bad does happen, and you get beyond the line “at least I have my health” and realize you need a bit more than just surviving, the effects can be frustrating and debilitating, almost paralyzing.

I have gotten through all the events in my life, with very positive thinking.  And it actually started with this book.  From the moment I was diagnosed with Hodgkin’s Lymphoma, all I could do was “imagine” my life being better.  Being able to see it in my mind.  And each day, I saw myself getting closer and closer to that goal, remission.  And I have used that approach during every crisis in my life that I have had to deal with.  And the common thing among each of those events in my life, it took time.  You do not just recover overnight from tragedies and crisis.  And you most certainly do not invite bad things to happen.

But there is a difference between being a positive person, and someone who just keeps their head buried in the sand, or wearing blinders.  A person who deals with things head on, simply dusts themselves off.  But the person who has to pluck their heads out of the sand, must first pull out each grain of sand from their ears.  There is a difference between hanging around people who are negative, worried only about the bad things, having nothing to offer in hope  to a solution to those problems, and only want you to stay with them in that dismal hole, and those that offer hope and guidance in spite of the bad things that have happened in heir lives.

Yes, it is only two weeks since Irma hit.  And the two groups of “positive” people are still dealing with the aftermath.  Those that realize it takes time to recover, and those who need recovery to happen quicker.  We may lose patience, and that is okay.  We just cannot let that lapse in patience paralyze us or allow it to hurt us any further.  But this is what a positive  person does, they know it will get better, and they will do what they have to get there.  And we believe that we can get there.  And will there be other crisis?  Of course there will be.  But will you continue to bury your head until you have to deal with that next event of negative adversity?  Or will you learn from the event, and use that experience to overcome once again when called into action?

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.

Post Navigation