Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Family and Friends”

Why Paul’s Heart?


Why “Paul’s Heart” and why now?

I began “Paul’s Heart” as a step to writing a book, about what, I do not know.  As you can see, I am trying to keep all my options on this blog.  Perhaps, just as important, what I am trying to write about, is why?  I believe that some how, if I can reach even just one person who has gone through similar an experience like I have, or perhaps even inspired by someone who has had to deal with for so much.

But what if that person has no way to express how he or she feels.  I am hoping that this blog does just that, give everyone a voice.  By recognizing me and my limitations, they know that they will take care of us all.  I am laying it all out there.  It is a huge risk on my part because of employment, insurance, and just plain mean people.

However I am hoping that if that time should ever come that my health issues result in a bad judgment against me, as long as my blog has helped one person, then “Paul’s Heart” has been worth it to me.  If you are that one person, I am willing to be your voice.  I am willing to stand by you and help you find the care that you need.  I am willing to offer genuine encouragement and tell you it is okay when you do not want it.

Money Well Spent?


Yesterday was a full day for me, in other words, a typical Saturday.  The only difference, I actually had the day off which meant I finally get to spend some time with my daughters.  Because of my involvement with the school board election, I have become more involved in the activities in the school district from attending not only district meetings, but school functions like musicals, athletic events, fundraisers, and like yesterday, a competition called the Odyssey Of The Mind.

I am still much too unfamiliar to give it the proper description that it deserves, but from the small bit that I was able to catch, the competition is clearly and example of the good things that can come from a public education.  Teams of students from elementary to middle schools compete in teams with creative problems, find solutions, and then act them out.  Some problems are planned out, some are impromptu.  Some have props, other problems the children are given the tools or props to work or solve their problems.

Last year, two of our district teams went on from the competition, to compete at the state level, and one of those teams went on to the World competition.

This was the first time that I had attended the event, and was completely overwhelmed by the thousands in attendance.  There were so many schools, so many children.  I got to speak with some of our schools’ children, parents and coaches.  And that is when I heard the sad part.  This particular event, the Odyssey Of The Mind is not supported or sponsored by our school district.  Of all of the things that our district and school board approve to fund, this educational learning challenge is not funded at all by the district.  The money for these competitions come completely from the parents who participate or if lucky, a principal who believes in this experience for the children.  These expenses can hit the thousands of dollars when all is said and done.  Please note, I am not speaking about the other schools that are represented.

I do not know the results of the competition just yet, and I am waiting for the phone call.  But I did want to recognize the efforts of the children and the parents for the hard work for the last six months in preparation for this competition.  And one of the things that I would like to do if elected, is to make sure that our schools are supported in these scholastic efforts.

Listed below, are the platforms that my fellow candidates and I wrote to be our main talking points during the election.  Of course, there are so many other issues to cover, but will not possibly fit on a postcard when mailed out, and to be honest, I cannot think of many people that want to hear any of us drone on for hours about all of the problems that we have become aware of since our first runs for this office.

 

  • Progress for ALL students

Equip all students with better resources for success.  The measure of our students is stated in AYP – Adequate Yearly Progress.  The district has been fond of making the claim that our schools make AYP every year.  But what the district does not tell you, is that when the scores are broken down, too many of our individual subgroups do not even come close to making AYP.  Minorities, economically disadvantaged, and special ed students are multiple victims of this misrepresentation of facts in reading and math results.

  • Straight talk, open doors

Promote community involvement through active dialogue.  Average attendance of a school board meeting 3-5 people, out of over 12,000 families, not including taxpayers.  If you want to find something out from our district, you will not get an answer without going through the tedious, burdensome, and if necessary to pursue a denied appeal, costly process.

  • Maximize our district’s potential

Invest in success with new resources.  No-bid processes hamper this effort, such as with our district’s architect who just this, was called out by a new board member, when the board recommended the architect’s approval without having gone to bid.

  • Advocate for world class public education

Provide a stronger voice in Harrisburg.  We rely on our local representatives to fight for the sixth largest school district.  Yet one example is the charter school process in our district.  Our district is in no need of a charter school, has plenty of private and Catholic schools, and given the current funding formula of the charter schools, would devastate our district and taxpayers.  Our school board did the right thing, but three of our four local legislators support our governor’s charter school agenda at all costs, one legislator even being a founder of one charter school.  The appeal is expected to be a joke and overturned, throwing the burden back on our district.  Our district needs to make a presence in Harrisburg.

  • Support those who make our district work

Recognition and fair treatment of all personnel.  Verbal attacks and criticisms of teachers, by the administration and board must stop.  The demoralization of the secretaries and support staff such as maintenance, cafeteria workers, and bus drivers must stop.  For those who vocalize against unions, the last section of workers do not belong to a union, and their reward is one of constant “take away”.  The district is doing what it can to reduce hours of a bus driver to eliminate the health benefits.  The cafeteria staff is continuing to dwindle in numbers creating a very unsafe situation.  There are more examples.  This cannot continue to happen which ultimately will have an impact on the children.

  •  Embrace the diversity of the NPSD

Identify and build its cultural wealth encouraging respect for all.  If I recall, our district has the challenge of dealing with over 75 languages (without checking my notes, I believe that number is much higher).  And all of our cultures have so much to offer the district, yet that resource clearly remains untapped.

 

So after visiting the Odyssey Of The Mind Competition, the above statements were what I was working on next, actually the entire campaign effort.  I have three other awesome candidates with each of us offering something unique.  And even stronger, we have a great campaign staff who is doing the leg work and muscle to make sure that we have the support and opportunity to spread the word, that we hear the concerns of the people of the district, and we want to help.  But we need the help come May 21st, Primary Election Day in Pennsylvania.

$.04 – Two Cents For Each Opinion


We do it when we look for auto loan rates.  When we go shopping, we compare prices and quality.  Even if there is a movie that we want to see so badly, but the critics said it stinks, we seek out and value the opinion of someone else, because they might feel differently.

Then why would we not do it for a medical opinion?  Two of the most common reasons are passivity and the belief that our lack of knowledge does not qualify us to question the doctors and technicians who clearly should know, right?

When the decision is more radical than simply selecting a medication, you have the right, check that, you have the obligation to ask questions, to get a second opinion.  When time allows you, and in most cases it probably will, you need to ask the question, what else can be done.

A pregnant woman who is five months into her term is recently diagnosed with Lymphoma.  This particular situation occurs quite often (not to be confused with “because of the pregnancy she developed Lymphoma).  The mother is faced with so many decisions,  can treatment wait until after the birth or  what effects will occur to the unborn child?  The mother will not be concerned with hurting the doctor’s feelings by requesting or demanding a second opinion.  She needs to know and understand all of her options, and the possible outcomes of those decisions.

One of the first young men that I counseled had been diagnosed with a cancer that would have left him with a urine bag, not to mention affect the possibility of fatherhood.  Clearly upset, shaken, and defeated, he was surprised when I had asked him, “what did the second doctor say?”  A second opinion took him out of state, but to another research institution that gave him an option of remaining completely intact, functional, and cured.

I have to stress, sometimes you do not have this luxury.  My heart surgery was one of those moments.  A stress test had discovered a blockage.  Its severity had not been known, but the cardiologist was certain it could be taken care of with simple catherterization and stinting.  Only when they got in there, did they realize the opposite, and far worse.  It was a common condition for this hospital to see, but not the cause.  The doctors felt that they could save my life, and while I was coming out of the anesthesia from the earlier procedure, my wife gave the authorization to schedule the emergency bypass surgery for early the next morning.  In that case, time was not an option.

But when you have the time, and face it, other than your heart beat stopping you will have the time, consider a second opinion, especially when it comes to something radical like a mastectomy or the removal of a lung.  You have to understand, if you go to see a surgeon for a diagnosis, their specialty is going to be surgery.  If you go to a radiation oncologist for a cancer diagnosis, chances are likely, the doctor will push radiation.

I am not a doctor, nor do I play one on television.  But when it came to my Hodgin’s Disease diagnosis and treatments, there were a total of eight doctors involved.  For my late effect issues, I have more than a dozen.  I am certain that my insurance carrier is not happywith all of the bills, but I am alive, and my quality of life is as best as it can be, and would have been far worse had I closed the door on the other options made available to me.

I honestly believe, that even 23 years later, if my radiation oncologist were to bump into me on the street, he would probably still swear that he wants me to undergo preventive radiation therapy.  I believe this because he chased me for the first five years of my remission.

There is the chance that a doctor may get annoyed with a delay for a second opinion, but if the doctor is worth anything, they will welcome a second opinion, a chance to discover something that might have been overlooked, some newer option available.  Just as it only took a decade to come up with a better and safer treatment for Hodgkin’s, unless my oncologist was kept well-informed of the progress, I would not have had the options. 

I am blessed to have a great team of doctors who work with each other, in spite of the geographical distance.  Time is rarely wasted as they consult with each other, which has become my second opinion.  They know that if they did not do it themselves, then I would do it for them.   Doctors know time is important, but so is the sanity of a patient that all efforts to minimize the effect to quality of life have been exhausted.

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