Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Education”

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?

Surviving Irmageddon


I had originally only intended on taking time off from writing while my children were visiting me this summer. But upon their return, a weather pattern had caught my attention, and then kept it. I live in Florida, and we were right in the crosshairs of the largest hurricane, Irma, ever to hit the United States.

There are several things I would like to mention. And many are enlightenments, and others relate to my ability to “survive” crisis.

You were stupid for not leaving!

You know, when I lived up north, it was very easy for me to make that comment to those that stayed in high risk areas of a pending storm. What I learned very quickly here in Florida, and this is whether a person chose to stay, or to leave, each individual had their reason. And neither deserves to be judged for that.

Earlier this year, our area was hit with 2 major brush fires. Evacuations were mandatory. If the fire did not burn you to a crisp, the smoke inhalation was going to kill you. There was no alternative.

With Irma having our area in her crosshairs, I, along with others were told we had to evacuate. I do not think any of the majority of us who remained could claim we had nowhere to go, at least for me, I had many friends who offered. The truth is, the way the storm was predicted to travel, it almost seemed I would have either had to travel to California or Canada to escape the path. Many I know stayed in hotels in other states. For me, it was simple, financially I had no option.

While there is the initial expense of evacuating, then you have the expense of daily living while away, and if necessary, having to stay away, and then coming back. Many I know are in the $1000’s of dollars so far, having evacuated.

In the eye of the storm.

I have personally gone through 7 hurricanes now. The first I do not really count “Agnes”, as I was just a child and had no idea. The next was “Gloria” which I do not remember because I was attending a Hurricane Gloria party, and there is a reason I do not remember. Then I went through “Daniel” and “Floyd” where I first heard the words “evacuation plans.” “Rita” was a real doozy. And “Sandy” was one of the worst to impact me personally, until “Irma.”

I had always heard stories of experiences in “the eye” of a hurricane. When the main part of the storm came, I had lost all power, and was listening to news stations via transistor radio. The eye was going to be passing directly over me.

I may never win the lottery, admittedly I do not play, but I can now cross off going through the eye of a hurricane. The news anchors were of course warning listeners not to go outside to exper0ience the eye, which of course, at least for me, meant I needed to do just that. The anchors did stress, or as I took it, gave permission, that if anyone ventured outside during this time, there would only be roughly 10 to 15 minutes before the winds picked back up.

While I did not see glorious sun, or stars, I did get to experience the relative and eerie calm, the proverbial calm before the storm, the other side of the wall of Irma.

The day after.

We had survived. We were all without power. No access to gasoline or food or water.

Survival mode.

From the day I was diagnosed with Hodgkin’s, I learned very quickly, how to survive a crisis, or at least to have the best chance. Calm, stay calm and focused. You have a better chance of dealing with something critical if you can keep your thought process straight. I have used this process repeatedly, from my cancer, to my heart surgery, attack of sepsis, my first wife’s car accident, and many other events. I would handle Irma the same way. While the majority of the people in my building are older than me, they also made a choice to remain. They were impressed with how calm I was remaining even as the storm neared, and how rational I was acting once we went outside.

If you panic or stress, you are going to make things 100% worse, guaranteed. And nothing will change for the better as a result of panicking or stressing out. And so, as we ventured back outside, we would find our vehicles had survived, clearly landscaping was destroyed, but our building fared pretty well. Next, came assessing, where we would go from there, and what would we do.

We had prepared for the loss of power, and therefore, water and non-perishable food to survive many days until help would arrive. Many of my friends made fun of me, reverting back to my college diet of Chef Boyardee canned ravioli, PB&J sandwiches, and a host of snacks and processed deserts like Devil Dogs and HoHos. But you know what? I was going to eat at least.

Once outside the confines of my building, Irma’s destruction was more visible. No power, anywhere. Traffic intersections with no working lights, in the entire county. Trees were down everywhere, but homes looked good for the most part. There clearly were homes destroyed however.

Patience is not just a virtue.

The first thing everyone wants to do once the storm is passed, is return home. And where I live, it is considered a very beautiful area (though nicknamed “Heaven’s waiting room” because of the average age of the population), it is expected to bounce back immediately. But it did not, and it has not. Many of us have advised our evacuee friends to remain where they are, because, our area is not ready even for them to return.

Though gasoline was near impossible to get with mulit-hour long lines, fuel seems to be more available. Shelves at grocery stores are still struggling to keep up with demand and are emptied as soon as the stores open. We are on a boil water order, because our sewers are backing up and the treatment is not able to keep up. It is a major lifestyle change for those that have lived here any length of time. But for those who left for the storm, you are in better living conditions than what we have here right now. The difference between us, is that we have had a week to adjust to the change. Anyone coming back now, will be hit with shock and emotion, as to what they have, and what they can do. We currently have an ordered curfew for the entire county. Mosquitos are becoming an issue. Schools will remain closed until the final week of September.

For those of us that remained, we can see things improving. And because of that, we have patience, well at least most of us.

Technology was not really kind.

The thing about Irma, it made communicating almost impossible, even for emergency personnel. I make it a point to talk to my children every day via Facetime, and a week later, I am still searching for “hot spots” just to make a cell phone call to them. I can send text messages, but not all go through. It did not matter what carrier you used, communication was affected.

More ahead?

Rumor has it, there are more storms heading this way. I have not seen TV in over a week, so I have no idea. In fact, I have no idea what is going on in the world or our country. I am getting messages now, and I want to thank everyone for your concern. I am fine. I have survived yet again.

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