Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Education”

Are We Ever Going To Try?


Two headlines today.  One in a town of Pennsylvania.  The other occurred just miles away from the site of another massacre, decades ago.  The difference for me with this post, is one of these headlines affects me personally.  And really, it should not matter which headline it is, neither should have occurred.  But they did.  And as of this post, the Colorado shooting has now left one teenager dead, with 7 wounded.

Like many parents, I got the phone call this afternoon from the school district, announcing that the school that my daughters attend, had been in “lock down.”  Most of us have no idea what is involved in this condition because we do not get to see it, that is, unless you have seen the movie “8th Grade,” or seen it explained during a news telecast.

The recording came with details, that a student clearly between the grades of 7 through 9, was on security camera moving a BB gun into their locker.  Security, unable to determine the type of the weapon, acted swiftly, instituted the lock down, and notified the local police.  The student was apprehended, all students were declared safe, and the lock down was lifted.  It was later discovered that additional weapons had been found during search.  But the bottom line, a major crisis was averted, and even though the weapons may have been of the caliber of a BB gun, the fear and panic that could have resulted, could have resulted in tragedy itself.

In Colorado, the assailants entered the school, deep into the school, eerily it seems similar to Columbine, wounding several, now officially killing one teenager.

This post is NOT about gun control.  We all know that neither side of the argument is not going to go anywhere with that discussion.  The slaughter of children at Sandy Hook we all swore would finally bring us to the point that we had to do something.  And our country failed.  Again and again and again.

I have some experience behind the scenes with the school district that my daughters attend.  I know the efforts that are taken to secure the safety of students.

I campaigned as a school board candidate the year of the Sandy Hook massacre.  That tragedy was actually one issue that all candidates agreed on, that needed to be dealt with, at all costs.  In fact, later that year, the district held a forum to inform the community and families of the efforts the district took to makes sure students were safe.

Personally, at the time, my daughters were in elementary school themselves.  Of several things that I learned while campaigning, attending school board meetings, and attending “safe school” committee meetings, I learned of the evacuation plans, mustering plans, but also something else, that needed to be dealt with immediately, the access to the building at the main entrance.

Many schools today, hopefully all, have electronic entrances, you need to be “buzzed” in once identified, while all other doors remain secured.  The problem with my daughters elementary school at the time, the monitor used to view the person entering, was of such poor quality and small size, the person would have to be admitted pretty much on an honor system.  And by then, our school would have been at a similar risk for tragedy.  This was one of the first things addressed and corrected.  The fact is, the district has taken many more steps to secure our schools and keep the children safe.

The technology worked.  The trained staff acted accordingly with swift response.  Local authorities responded within minutes.  The suspect was apprehended.  Everything worked exactly as it should have, and without tragedy.

Yet even with everything we, as adults know, about the efforts to keep our schools safe, there are still certain students, in spite of methods to intercept weapons, still attempt to bring them into the schools.  And yes, with a BB gun, fatalities may not have been likely, but definitely harm could have been done.  And because our district has done all it can to prevent, plan, and respond, that means the rest falls on one other entity, the parent.

In my years of campaigning for school board, and since, the one thing I hear no conversations about, are what can parents do to prevent events like this.  There is always ridicule about the parents on Facebook or news stories and what they should have done, followed by defenders of those same parents snapping back that we do not know what their home life is like.  And there it is.  The only one who knows what is going on in the home, is the parent.  The parent is the one who needs to be aware if their child is emotionally hurting.  The parent is the one who needs to know about weapons that their child may have access to.  And this final thing should not be that hard to do, the parent needs to explain, on a regular basis, that it is wrong to bring any weapon, toy or real, to school.  The parent needs to explain the consequences for making such a horrible decision.

Yes, parental accountability.  It is the one thing that has not been discussed even 10% as much as gun control is raised with each school shooting.  The districts do what they can to keep our children safe.  Local law enforcement trains to respond to active shooters at schools.  But the only ones having no part in this conversation, are the parents themselves.

And I would encourage every parent to attend a school board meeting, and raise this issue.  As the deputy sheriff in Colorado stated basically that the area and school is low crime, a good place, also known as “won’t happen here town”, it can happen anywhere.  And while my children, along with their classmates followed orders during this lock down, not knowing if it was a life or death situation, I should not have to keep having these “after it happens” conversations just because parents do not want to talk to their kids before it happens.

I am relieved that today was resolved without anyone being hurt.  But my heart aches, for yet another school shooting that did result in injuries and death.  Time for the parents to be a part of the safety plan.

When Your Body Does Not Tell The Truth


Tuberculosis.  It is a very contagious disease that fortunately, when diagnosed properly, is treatable and containable.  Of course if you are full blown TB, the signs are obvious.  But if the disease is latent or has not advanced, it is important to be tested, especially if you work in the medical field, schools, or even zoos with primates.  A TB outbreak can be quite serious, if not catastrophic.

TB is not much of a concern here in the United States, but as a free country, we have those who travel around the world.  One such example of that travel, is to internationally adopt.

Both of my daughters are adopted internationally, and as part of their care prior to the adoption, was receiving a vaccine called “BCG”, specifically administered to prevent TB.  Sounds like a good thing, prevention, and it is.  But there is an unintended side effect.

Prior to both of my daughters arriving home in the US, my daughters went through physicals at the consulate clinic.  Of course, both were healthy, happily.  But upon returning home, we had our own well-baby visit to attend to.  And a requirement by the adoption agency, our daughters needed to be TB  tested.

Now, the issue that comes up from TB testing a child who has received the BCG vaccine, is something called “a false positive.”

And you can get these “false positive” reactions for any number of reasons.  I get a seasonal oil based steroid shot for my allergies that produces a false positive.  And in the case of my older daughter, and a clear majority of children vaccinated with BCG, she showed a false positive as well.  Now there are immediate issues as well as long term issues that need to be dealt with.  And as my daughters get older, now in their teen years, approaching adulthood, it is important that they understand their health, as limited as our knowledge is because of adoption.

At the time, with my older giving that “false positive”, and with others who have this result, a chest x-ray is done.  And the only purpose of this chest x-ray, is to determine if you actually have TB.  If the x-ray is clear, then it is assumed you do not have TB.  Which is not completely true.  The disease could be latent, or dormant, or as in the case of my daughter, just a “false positive” caused by the vaccine.

Depending on the protocols of your pediatrician, some may actually decide to treat your child as if they were infected with TB, even if no signs, just as a precaution.  There are a number of drugs used, and the length of the treatments can last from weeks to several months.  Side effects can range from minor to severe, mimicking flu like symptoms or even affecting the liver.  I had heard nightmare stories about the treatments and their effects on their infants and toddlers, and it was decided that we would refuse treatment and look for a different pediatrician.

As for our younger daughter, we were ordered by the adoption agency to have her undergo the same test, but given what happened with our older daughter, we refused.  For me, it was simple, once the x-ray ruled out TB, I was not exposing my daughters to any side effects from treatments that were precautionary.  Dealing with side effects from my cancer treatments are harsh enough, and I had to go through those.

So, here is where it becomes important for my daughters, and others to realize how their bodies work, having received the BCG shot.  There is a gold standard blood test that diagnoses TB, called Quantiferon.  And this test leaves no doubt of a diagnosis, but also prevents the “false positive.”  For someone exposed to the BCG vaccine, and as long as your medical professional knows this exposure, you should automatically pursue this testing if required for school or employment.  Bottom line, this is where it will end up anyway, and, needless to say, the delays and worries you will face with having a “false positive” hanging over your head.

As I mentioned, that allergy shot I got, was always given around the time I had my annual health surveillance at work.  I would hold out as long as I could so I could get the TB test done, but it never failed, I ended up with the allergy shot first.  And then the threat would come from my employer, I would be prevented from working until I could be cleared, going through the Quantiferon testing.  That would mean, no paycheck.  For college or other schools, you could be prevented from participating in programs that involve health while you wait for official results.

“Paul’s Heart” is about awareness, not alarming.  Know what you are dealing with, before you have a situation that has to be dealt with.  I do not anticipate any problems for my daughters because of this BCG vaccine, but it is important that they know how to be tested when necessary.

“Why Can’t You Work?”


Over the the last twelve years of my survivorship, one question that comes up over and over and over again.. “why can’t you work?”  This question comes from many different people, former co-workers, friends, and even family.  The question coming from most of the family is really kind of a weird question, because most have all been there from the beginning, well, except for two.

A recent photo with my daughters and I, I am sure the question will come up again.  And yes, that question has come up from my daughters as well.  I have taken my time explaining my health to my daughters, because as many of the health issues that have popped up, occurred when they were much younger, and the last thing that I wanted to do was scare them with the realistic possibility of dying – a near fatal heart blockage, and a battle with sepsis.  But every year, as they have gotten older, they have noticed that I do less and less physically.  For nearly all their life, they knew me as someone who put in a lot of hours at work and at home.

My daughters were not there when I went through my battle with Hodgkin’s Lymphoma, and was treated with an exposure to radiation of four times the lifetime maximum, and several toxic chemotherapy drugs.  Thirty years ago, survivorship was based on five years.  In simpler words, we were not expected to survive past those five years.  And clearly as you are reading this, there is a problem with that thinking.  In fact, that thinking was way wrong even before my diagnosis.  Hodgkin’s had already been treated for decades before me, with even more barbaric treatments.  I personally know survivors with 10, 20, 30, and more years survival than me from Hodgkin’s.

So here is the problem, only up until a decade or so ago, less than a handful of doctors realized that survivors of Hodgkin’s were developing side effects from the exposure to the high dose radiation and chemotherapy.  And just as tragic, only a small percentage of us long term survivors, literally out of millions, we are probably lucky if 10% actually know that many of their health issues today are attributed to their treatments.

Medicine had not been teaching cancer survivorship to its future doctors and nurses.  And for the most part, even today, many medical personnel only learn of these issues from their patients.  Nothing like on the job training.  The truth is, there is actually a well documented resource available for survivors like me, as well as new survivors.  And it is available to EVERY doctor, EVERY doctor.

http://www.survivorshipguidelines.org/

The Survivorship Guidelines are put out by the Children’s Oncology Group.  So, if you are interested in researching this further, simply go to the link I provided.  Back to the question posed at the beginning.

Some cynics may say, “gee Paul, you seemed fine to do everything before the doctors told you everything that was wrong with you.”  The only part of that statement that was correct,  was not that I was able to do everything, but I was in unbelievable pain, and could get no answers as to why.  Oh, and the heart thing, I put up with the symptoms of a “widowmaker” blockage of 90% of my main artery, simply because I was not seeing any doctors because I was not being followed up.  The cardiologist who discovered this initial condition put it this way… “it was not a question ‘if’ you were going to die, but ‘when'”.

Following that, I developed a team of experts at Memorial Sloan Kettering, who discovered many things that had developed over the years, finally answers as to why I felt this way.  But getting answers was not the most important part.  Discovering how I was going to manage the issues that had now been discovered.  Everything that was happening to me could not be cured.  Everything was and is, continuing to get worse.  My health is not about getting better, but rather slowing down the progression of these issues, management.

The average person honestly could not handle hearing the things that have been done to me.  Shit, many in my family could not handle it.  Which leaves me only one option, I have to put on the “brave face” and just not let anyone know how I am feeling, or the unbelievable pain I am dealing with.  In order to do that, at least until a few years ago, was to go on multiple pain medications combined with a sleep medication because the pain was still bad enough to keep me awake in spite of being on 3 opiodes at the same time.  But all those medications were able to get me though my work day, which was important to everyone else.  Forget the quality of life that I was sacrificing just to keep others happy.

And the downside to this effort, because I pushed my body as hard as I did, my issues were actually accelerating in deterioration, my body getting much worse, much quicker.  In spite of being put on multiple physical restrictions at work from certain activities, I was still given other details which either made things worse for me or at best, continued the pace.  I had restrictions of weights, mobility, and movement.  Were it not for the American With Disabilities Act, I would have been out of a job long before that.  But because of the ADA, my employer was required to accommodate my health restrictions as much as they could, as long as there was work for me to do.

But as the years went on, I continued to push myself.  Back in 2012, and January/February of 2013, I made five trips to the emergency room (one by ambulance at 3am), two that had the potential to end fatally.  My heart surgery four years earlier was the wake up call I should have paid attention to earlier.  I should have been listening to my doctors for all those years, telling me I should consider retirement on disability because of all the health issues I was now dealing with.  But I was not prepared, especially mentally to “quit”, which is what I felt I was doing.

A couple of years after that, and some new directions that my employer was making staff and building wise, combined with actions related to my divorce, I ended up on that path to reality, disability.  I have long had the handicap placard for my car.

I do not like to use it, but will if necessary.  I really still have a hard time with the stares at the appearance of my youth and the shell of my body showing no reason to need this assistance.  But depending on the activity, if I need to carry something, or the weather conditions, my body is instantly shut down by symptoms that develop very quickly, taking a long time to recover, and I really hate that worse than the stares.

So, when my daughters ask me, “why can’t I work?”, I explain to them that I really do want to work.  But besides the issues of my health, there are these factors to consider by any perspective employer:

  •  I have limited movement of my shoulders and upper body that can actually cause me to collapse out of instantaneous exhaustion due to cardiac issues, and due to radiation damage, I have an increased risk of tearing both shoulders apart.  So I am limited to activities of no lifting any sizable weight, or repetition.
  • Having only 75% of my lung capacity, weather and climate, including indoors can have an effect on me
  • And you are only as strong as your skeleton an muscles can provide, and my body is at an increased risk of fractures and muscle injuries.
  • And of course, with Hodgkin’s being a cancer of the immune system, and having had a splenectomy (spleen removed) through the process, I am at a higher risk of getting sick, especially from people who come to work sick, or do not believe in vaccinations.

Now if you factor in all those facts, two other important details.  The last thing an employer wants is an employee being hurt on the job, because that would mean a claim on their Worker’s Compensation plan.  And quite possibly other penalties depending on what could have been done to prevent.  It would make no difference me having these issues, if I got hurt working for them, it would cost them.

And then there is this.  Following my heart surgery, I became unable to maintain a robust attendance record I used to brag about.  Until then, I used to brag about year after year of perfect attendance, including during the days of my original treatments.  In 30 radiation treatments and 8 months of chemo, I never missed one day of work.  But years later, my body could no longer take it.  Following my heart surgery, I would never see perfect attendance again, in fact, absenteeism for me dropped to 30% and near the end of my employment, I missed half of my work schedule either due to my health issues themselves, or doctor appointments to deal with them.

So, “why can’t I work?”  My daughters get it.  And so should anyone else who asks this question of me, or asks it of anyone else forced into the unintentional and unwanted decision of going on to disability.  It is not that I cannot work.  But who wants to hire someone who has all the health restrictions that I have, and the attendance record I have?  And the only way that I can get around those two issues is to be on multiple opiodes taking away the quality of my life.  My decision is an easy one to make.

I am not immortal.  And I know that the health issues that I am dealing with, have reduced my mortality a lot.  I joke that I must have been a cat in my former life, given that I have dealt with a health crisis at least 5 times that could have resulted in my death.  And if by some chance, this is more than a coincidence, I am doing what I can to take care of the remaining 4 lives that I have left.

My doctors have told me they will do what they can to make sure that I see my daughters graduate, walk my daughters down the aisle (if they choose to get married), and even see grandchildren.  I just need to do what I can do which means listening to the warnings of my doctors and not the gripes of people who feel their judgement of something they do not understand should carry some weight in my remaining years.

I cannot do the things I used to do, and not just work.  I no longer play softball and volleyball, my exercises are limited, I no longer ski or do other outdoor activities.  I do what I can, within my limitations, that allow me to enjoy the time with my daughters.  I am not crippled by my health, at least not yet, and to protect the average person who cannot handle what I am dealing with, I go through each day, continuing to only allow people to see the shell of a “seemingly healthy young man with no outside signs of health problems… who even smiles.”  Who I am on the outside is what matters to you.  What I am dealing with on the inside is what matters to me.  And that is why I am not working.

And for those in my life that still want to doubt, I carry my entire medical file with me that backs up everything I am dealing with.  Someday, my daughters will ask to see it, so that they learn the details.  But for now, they know what I am dealing with because they have seen it.

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