Paul's Heart

Life As A Dad, And A Survivor

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?

Cancer And Employment


At one time, I used to be proud of the fact, that the only time that I missed from work, while being treated for Hodgkin’s Lymphoma, was for the actual treatments themselves.  Think about it.  I got eight months of toxic chemotherapy, and all I missed from work, was the last two hours of the Friday for my treatments, just twice a month, for 8 months.  I spent the entire weekend crashed and vomiting, but showed up for work the following Monday.  During 30 days of radiation therapy, I missed only the first hour of work to attend the treatment.

So it was only natural that once I finished my treatments, I would go full tilt back into my life.  Get back to normal.  Head back to the gym.  The only problem with that for me, is that I tried to pick up right where I left off more than a year and a half earlier.  Of course, injuries occurred.  My body had been put through hell for the last year and a half.  But hey, my only goal was to prove to myself, not only did I beat cancer, I did not let it take my work ethic and ability from me.

In 1993, the Hockey world was rocked when it discovered that one of the greats to play the game, had been diagnosed with Hodgkin’s Lymphoma.  Of course, by then, I had been in remission for three years.  But given his celebrity status, I was certain that he would be able to afford the best care, and would beat the cancer.  Mario Lemieux made it clear that he would only miss games due to his treatments and would return as soon as they had been done.

Two months later, Lemieux returned to the game, against the Philadelphia Flyers (my favorite team and rival).  Philly fans are not necessarily known for their class, but rather lack of it (having thrown snowballs at Santa Claus during an Eagles game).  Lemieux got a standing ovation for his return.  And the hockey world was put on notice as he scored a goal and an assist (Flyers got the win, however).

Nothing will drive a cancer patient harder, than the desire to get back to “normal.”  And “normal” is assumed to be what we once used to be able to do before cancer came into our lives.  Much like Lemieux, as soon as my treatments were done, I hit the gym hard, and I mean hard, full tilt.  No, I did not have the strength anymore that I once did, but I had to start losing the fifty plus pounds I gained on chemotherapy (yes, it is possible to actually gain weight on chemo… prednisone… that’ll do it).  Like Lemieux, I ignored the risks of injury because of my weakened body.  Like Lemieux, I got through my rehab phase without injury.

But as I mentioned, I also continued to work not just through my treatments, but of course continued even stronger with my work ethic after I completed treatment.

Chemo and radiation treatments also wear down the immune system.  So remaining at work, or returning too soon, can leave you susceptible to others who come to work ill with common maladies such as a cold, the flu, pink eye, strep, chicken pox and so on.

But the physical part of the decision to either continue to work or return to the work force is only one factor to consider.  There is the emotional, or mental part that needs to be considered.  Your emotional state of mind will also play a role in the physical world.  You will not only deal with your own emotions, but the emotions of your co-workers, and this can have a profound affect on you.  Because if you have anything less than a supportive co-worker, those frustrations will be taken out on you, and you have enough on your plate without having to deal with someone else.

The only person who truly knows, not understands, but knows what you are going through, is you.  Even myself, I have a very good idea what you may be experiencing, more so than just understanding, but only you truly know what you are going through.

My attitude has always been, “your body has been through Hell.  Give it the break it not only needs, but deserves.”

Post Navigation