Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Family and Friends”

My Fight For Education


A few years ago, I made one of the most illogical decisions in my life, to run for a public office.  I had no political experience, a fairly average voting record, and the only political interest I may have had, was occasionally flipping through the channels on the television and occasionally catching bits and pieces of a biased “news” channel.  But something changed in 2009.

A new phase in my parental status was expected to begin following the Labor Day holiday.  But a huge cloud was hanging overhead.  It was a looming teacher labor crisis, common in school districts all over the country.  The climate was mirroring a similar contract negotation within our school district, which resulted in a strike then.  All that mattered to Wendy and I though was that it was Madison’s first year in school, and we had no other daycare options available if the teachers would go on strike.

And then it happened.  The announcement was made that the teachers would go on strike.  A court order mandated that the strike had not been given proper notice and the teachers return to the classrooms.  But another walk out would occur incurring the wrath of many in the district, including myself.  All I knew was that teachers make enough and only work part of the year.  Now before I hear from anyone what a jerk I was, I know it.  Like I said, this was uncharted territory for me and I was pissed off not having a firm arrangement for Madison’s care.

The media concentration on the strike was typical.  The district presenting their opinions that the teachers were being unreasonable.  The union responded that they were frustrated by the lack of understanding and consideration by the district.  Back and forth, back and forth.  I cannot say what exactly it was that caused this emotion in me, but the school board did something I considered despicable, legal, but despicable.  The board authorized the publication of every teacher and guidance counselor’s salaries in a full page color advertisement in several local newspapers.  I was infuriated.  And just like that, my support flipped completely to the side of the teachers.

This bully tactic did exactly what it was meant to do, raise the ire of the taxpayers and parents.  It is common sense that there will be a difference in salaries for teachers with one year of service and those with thirty years.  I had no idea what a teacher’s salary was, and though a matter of public record, was no business of mine.  My only concern with a teacher was educating my children.  At that moment, I had no idea what direction I would go in, but I was going to support the efforts of teachers, learn what the teachers did and the commitments nearly all make in molding our community’s future.

I followed the negotiations very carefully, and then an opportunity knocked.  Following a recent school board election, a re-elected board member decided to resign (conveniently after defeating an opposing political party opponent).  A replacement would be chosen by the board after soliciting replacement candidates.  I made the decision to put my name in.  Miraculously, a replacment had been chosen.  None of the other applicants had been contacted about the interest or resumes, but the replacement also happened to be from the same political party as the resignee and dropped out of the race prior to the primary so as not to compete with an incumbant.  Amazing what happens even when it comes to local politics.

Denied.

That following January, another opportunity came.  An information meeting was held to teach how to run for a public office, in particular, school board.  It was attended by people representing both political parties and third parties.  A couple of weeks later, I made the decision to officially run for school board.  It was an exciting experience for me.  Four others made the decision to run with me as a full slate of candidates bent on removing the bullying incumbants and restore respect and dignity within our school district.

Two of our candidates had broken the glass ceiling in being elected.  The other three of us, including me fell short of votes by less than 200.  Our efforts fell short just because enough people did not feel their votes would count.  We ran a clean campaign, and for three of us, it was our first campaign.  We had nothing to be ashamed of.  It was less than a week later, the three of us made the decision to continue the fight.  So I will run again for school board in 2013.  A lot of people question the need to do this, especially with the many health issues I have to deal with, but it is simple.

I feel right now, my most important role of being a parent, is to make sure my daughters get the best education possible.  For my wife and I, we believe in public education.  We both graduated through the public school system.  We were both successful because of our education.  A free public education is a right of our children just as it was for myself and others, and the generations before.  It is our obligation for the strength of our community (and country) to provide a strong and quality education.

There are plenty of disagreements from teacher salaries to school choice.  I no longer just look at the actual dollar figure of the teacher’s salary.  I do believe in school choice.  We should be free, and in my school district, we are free to choose from private schools, Catholic schools, even other elementary schools within the district.  And in districts where education is suffering from quality and need, charter schools originally seemed to address those concerns.  But charter schools would come at an additional expense to the district, and trickle down to my home in the form of higher taxes.  But even more hurtful, limited by state mandate, expenses of adding a charter school could not be covered completely by an equal tax increase, which result in only one thing, cuts.  Approval of a charter school in our district will not only raise our taxes, but to make up the rest of the deficit of next year’s budget, our district will have to look at cutting curriculum, programs, and staff.  This will effect my daughters’ education in a dire way.  They are too young right now to know what their future will be, but they should be offered the opportunities that I had, that everyone had to be able to recognize their potential.  And that means offering everything that is possible.  If we as a taxpayer are willing to pay a charter school to teach the programs our district is willing to cut, why cannot we keep them in the first place?  If we as taxpayers are willing to provide a smaller class size (the main argument made to support a charter school), why is our district so unwilling to make that provision within our school system?

There are plenty of other issues.  These are difficult times for education as a whole.  Budgets are strained.  Expenses rise.  But respect, quality, and responsibiltiy cannot suffer for the ill decisions made in the past.

School board director is a volunteer position.  It is a lot of hassle, for no pay, a lot of criticism, but knowing that you are helping to mold the minds of the next inventor, the next discoverer of a cure for cancer, the next president.  I have made a commitment, and have volunteered the last three years attending most of the school board and sub committee meetings to make myself familiar with the goings on of our school district.  It is a monumental task and commitment.  But for my daughters, it is worth it.  And for my commitment, I believe that everyone else’s children will benefit as well.

February 5, 2013


Today was an unplanned trip to MSKCC for an extra test ordered by Dr. M.  He is considered one of the best in the discipline and has experience with radiation damaged bodies.  Today he had ordered a barrium swallow scan.  I am dealing with a recurring swallowing issue.  Two years ago, I let it get bad enough that I was barely able to get water down my throat.  This period last well over eight months.  With the symptoms returning, I was not going to wait as long this time.

My doctors do not like that I wait until I hit DEFCON 5 to do something about my discomforts, and I am slowly coming to grips with living that way.  When it comes to the area of my body that took a major hit from radiation therapy, I know that symptoms, decisions, and actions will be critical.  My appointment is early this morning, earlier than I can normally get there using public transportation, but I was able to pull it off.  My tech was young, very polite, and soothing.  It is very easy to become overwhelmed once you see all the fancy equipment.  Even from twenty three years ago, I have always been fascinated with the technology.  I am not advanced enough to understand it fully, but enough to know what is going on.

Because of my fascination with the procedures, I am also able to pay attention and understand what is happening.  I probably should have added an asterisk when it comes to observation.  I am SUPER squeamish.  In spite of everything I have been through, I will pass out looking at a paper cut.  Back to topic.  The barrium swallow test is going to be basically a live xray of me swallowing a “radioactive” solution multiple times to watch how the liquid (and a couple of solid items) pass down my throat.  They will also be looking for areas that food and liquid get caught.  The substance is not the greatest tasting at all, and being warm does not make it easy to go down.  But it does go down.  At one point, I was given a small amount of a “fizzy” substance (similar to “pop rocks”) which I was supposed to swallow to get closest to my throat as this substance was going to dialate the throat.  That was wierd.  I was told to resist the urge to belch which I did not think was going to be difficult, but as soon as it went down, yep, I wanted to burp.  I held out though.

So that is all for the swallowing part of it.  What did they find?  I cannot stand when a tech tells me, “okay… good to go… the results will go to your doctor and you will hear from them.”  I should be happy with that after all, the last time I had to see a doctor immediately following a test, was when I had my heart surgery.  Unfortunately, I do not like surprises.  With my colonoscopy and endoscopy planned for next week, what currently stands as an outpatient procedure, I know can now be somewhat involved.  I am a “plan for the worst, hope for the best” kind of guy.

The first thing that they found clear as day was a hernia.  And yes, it is one of those discomforts that I have had for a long time, as in years.  As a long term survivor, I do my best to have my symptoms and complaints responded to and treated, so I do not want to come across as a hypochondriac.  If I recall, this was picked up on last year’s endoscopy, but was not of concern then.  The other item that was discovered they called a diverticulum.  I do not know if this is related to a diagnosis of diverticulitis or not, but one thing was clear.  The muscles of my esophagus were forcing this protrusion out which blocked off my esophagus.  Definitely a clear indication towards my swallowing issue.  I am not sure how it will be or if it will be corrected.

The one surprising thought that caught me off guard was when they explained to me what this condition had the potential to lead to, pneumonia.  For weeks, it drove me batty trying to figure out how I came down with pneumonia.  In the case of diverticulum, they call it aspiration pneumonia.  My last bout of pneumonia was all infection, which means that the pneumonia could have been caused by this.  The important words to me though, were when the doctor said I had true symptoms.  Duh!!!  I know they were true. 

As I left the hospital, I called home to Wendy to let her know how things had gone and that is when she told me that our youngest was getting quite ill from her ear infection and needed to get to the doctor.  I had the only available car, so I did what I had to.  Tear open my shirt exposing the capital letters SD on my chest, my cape now flowing, and got home as quickly as possible.  Okay, quick bus ride, quick train ride, and quick ride down the pike, up the pike.

Fortunately for my daughter, who has a hard time looking sick (remember this as adults, we require people to look and act sick when they are really sick) is happy as a seven-year-old who just downed eight ounces of pixie stix coated Sour Patch Kids.  So, neither of us gives the outward appearance that anything is wrong, but thanks to the doctors who care for us, care and knowledge result in diagnosis and healing.  Thankfully, Emmalie’s issue is less complicated than mine.

Does Size Really Matter? – Deciding On A Health Facility


Memorial Sloan Kettering.  The Mayo Clinic.  MD Anderson.  University Of Pennsylvania.  The list goes on and on for the top hospitals when it comes to cancer treatments.  There is a different list of facilities when it comes to heart surgeries, pulmonary issues, and so on.  Many of our nations “best” hospitals are “teaching” hospitals, meaning that they are more likely to have the current diagnostic tools and treatments available.

I have taken quite a few moments to decide what hospitals to be taken too, of course ulitmately, I am at the hands of my wife to honor my wishes.  The closest hospital to us just also happens to be the last hospital in the world I would ever want to be taken to.  It has the worst reputation for cleanliness and sterility, in other words, you have a fairly good chance of going home with MRSA.  The longer you stay in that hospital, the better the chances of contracting MRSA.  So it is not necessarily a good thing if a hospital keeps you longer to recover from whatever took you there.  The reason that my wife insists on taking me there?  It is the only way that my daughters would be able to come and visit with me as transportation time alone would be an additional hour and a half.  On a school night forget it with having homework.  So, in that regard, I appreciate being local.  It is a smaller hospital, which recently had been bought out by a larger network, still not on the national level, but the buyout has been expected to improve the quality of the local facility.  I am just not sure that it has.

When I dealt with my Hodgkin’s Disease, I was not really aware of all of the “big” network and teaching hospitals available to me.  I did believe that if I were to go to any of them, besides the great distance, I was not sure that they could give me emotionally what I was going to need, that I would be treated just as a number.  Personally, I needed more than that.  The doctor that I chose worked out of a small network, but more importantly, as all cancer patients probably had the oppportunity for this, I knew a patient personally that he cured, my grandmother.  Granted, she was treated for breast cancer, but he saved her life, he could save mine.  The big risk I took by doing this, he was an older doctor, so there was a chance that I would be treated with older modes of treatment and not the most current available.  But I believed that if I had the confidence in him, I would have confidence in the medicine, and that would get me through.

At various points in my life, I would end up in the hospital and always felt comfortable with the hospital that I grew up near.  It has become quite the network and one of the best in the country.  So when I had some uncontrollable bleeding from an area that no man ever wants to see blood coming from, it was only natural that I went to that hospital.  When it was determined that it was not cancer or cardiac related (yes, blood in the urine can be attributed to a valve issue with the heart), but rather a kidney stone, how quickly that stone situation got resolved depended on where the roaming kidney stone unit was and what day.  Yes, hospitals in my area do not have their own “lithotripsy” machine.  The first time that it would be back at this hospital would be in approximately two weeks, however, it was going to be back in town the coming Tuesday at a hospital that I swore I would never set foot in ever again.  My grandmother had passed away in that hospital, and while it was not their fault as to the cause of death, I did have a problem with their methods of convincing people the importance of extending their terminal lives at the expense of their dignity.  As far as I was concerned, this hospital tortured my grandmother during her dying days.

But for anyone who has ever had a kidney stone, or gall stone for that matter, no one will deny the pain level to drive a six foot 300 pound giant of a human being into a fetal position in pure pain, than a 4mm stone.  I needed to have this resolved before the stone set to travel from my kidney.  I was going to have to have the lithotripsy (shock-waving the kidney stone into obliteration), at this hospital.

Now let me tell you about how small this hospital is.  I was the first scheduled appointment that Tuesday morning.  Now remember, this is a fully functioning hospital.  It also evidently has hours of operation.  So the security guard unlocks the door at 5:30am precisely, and I am already third in line.  I cannot see what is happening, but I do see a lot of head-shaking.  Just like that, I am called to the receptionist and begin my admission, or the process that the hospital will be using in place of that procedure.  You see, when I offered them my driver’s license and insurance card, they told me that their computers were not operating.  They did not state if it was expected to be a long drawn out process or not.  I stated that I had a 5:30 procedure scheduled so it was urgent that I be registered and they offered to make a photo copy of my indentification.  Fifteen seconds later the woman behind the desk came back and said that their copying machine was not functioning either.

Did I mention that I did not want to be in this hospital in the first place?  And so, without any identification, which I had to store in a locker while I was in for the lithotripsy, I was escorted into a room, where I would be anesthetized, with no identification, no hospital bracelet, nothing.  And so, the procedure went on, because I could not risk returning to the state of pain that the pea-sized stone had been causing me.  And to add insult to injury, they actually allowed me to sign myself out of the hospital later that morning, totally unattended.

I realize that the last example was an extreme case.  But it did happen.  And I went against my gut feeling in being treated at this hospital.  I got lucky compared to how this episode could have turned out.

My heart surgery, that was a totally different story.  I happened to be at that hospital in a connected doctor’s office.  I was already there, but I was already aware that the hospital had a good reputation.  But even that reputation is limited when it comes to long term cancer treatment effects.

When I found out, that I was not done with my cancer history, I had the major decision to make.  And it did not even come down to the biggest hospital or the hospital that made me feel all snuggly and warm.  I needed a network that had history, studied long term side effects.  My prior posts have gone into great detail on just how urgent my decisions can be.

As you can see, it all depends on the situation, do you go with the big network or the little hospital.  Does size really matter?  To some it does, to others, it’s what you do with what you know.

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