Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

A Relay Of Life


There is one thing that drives my doctors bat-crap crazy, is the schedule that I keep.  My friends and family enjoy it because it personally affects them without any regard for me, unless for some reason, I am not able to make it.  An entire weekend on four to five hours of sleep is not unheard of.  You see?  I am a guy who does not like to say “no” to people, and then, when I do say “yes”, I am a man of my word.  I will be there.

There has only been one exception in my life, when I had to have my open heart surgery.  I had a wedding that I was supposed to disc jockey for just three days later which clearly I was never going to make.  I actually recalled all of the bride’s information from my bed in the ICU.  With tubes down my throat assisting me breathing so verbally unable to communicate, I spelled out everything about my client to my wife, and she was able to help the bride locate another source of entertainment.  For the record, that story had two happy endings, my survival, and her wedding went off without a hitch and a new disc jockey.

But from that moment on, and learning that my lifestyle was going to go through a major change, recognizing myself as a long term cancer survivor clearly living with severe side effects, common sense should have told me that I need to slow down.  But instead, I found the opposite effect.  I developed a need to prove that I was even more reliable.  It was one thing to refer to myself as a cancer survivor.  It is another thing to be called a heart patient survivor.  Each thing by itself results in survivorship.  But together, it is called living, not just surviving.

A relay race is a competition with several legs in it, usually consisting of several runners, swimmers, or whatever they type of competition it may be.  In the case of my life, my relay has become about stages of life:  a battle with cancer, survival, issues with late effects, survival, and hope.  These things make up my relay of life.

Many years ago, the American Cancer Society developed a fundraising program called, The Relay For Life.  This Relay over the years has become one of the biggest fundraisers in the world of cancer, helping to raise millions of dollars toward research for new cures, support services, and other life needs of cancer patients and survivors.  This event typically runs for 24 hours consisting of teams who take turns, in relay fashion, walking a track (typically a school running track) during that 24 hours.  Throughout the event, there are vendors, and the teams themselves have “themes” for their teams, and may have miniature fundraisers at their location to help raise funds for their teams.

The other outstanding events of this evening are in honor of cancer patients and survivors, and in memory of loved ones lost.  Luminaries, lit candles inside of white paper bags light the entire track with the names written in tribute to those who are battling cancer, have battled cancer and won, and those who have lost their battle to cancer.  These two ceremonial laps are the most overwhelming, meaningful, memorable activities of the night, as everyone is reminded why they are participating, and the importance.

In preparation for the Relay For Life, many teams hold other fundraisers prior to the big event itself.  I have long since retired from disc jockeying, but I am known to dust off my equipment for those holding fundraisers to help with this event as it of course holds very special meaning to me.  Some may hold carwashes, colored bracelet sales, or “beef and beer” gatherings which are just a fancy way of saying “party”.  When it comes to most charities, I have always donated my time because to me, fundraisers are all about raising funds, not spending them.  And while some businesses may get “fundraised” out, at the worst, I will offer at least an extreme discount to absorb any cost I may have, but in general, most of my charity gigs are done as that, charity.

Of course, things have not changed since my heart surgery as far as issues that have arisen with my long term survival.  Physically, I no longer consider my body reliable as I have had so many issues come up, several without warning, that have incapacited me for a decent period of time.  But because I no longer physically push myself, over time, I have lost a major part of my physical strength, leaving me unable to lift my equipment anymore, without assistance anyway.    I have to laugh, when my doctors remark about how strong I am compared to other Hodgkin’s survivors.  And I can recognize that, except I am nowhere near as strong as I used to be.  Emotionally, I am slowly coming to the realization of what is important, what I can do, and what I cannot.

So I have cut back on requiring activities that expect me to push my limits of strength as fatigue just wipes me out.  Endurance is becoming an issue as I can no longer try to squeeze in 85 hours of activity into a 96 hour weekend, just so that I can keep everyone happy who have come to depend on me, and know me for getting everything done.  The last two times that I pushed myself like that, I ran myself so down, that I made myself susceptible to two bouts of serious cases of pneumonia.  You would think I would learn from that.

However, my altruistic personality being what it is, and my strong support of the Relay For Life, I did agree to disc jockey this fundraiser for a team that will be participating in our local Relay, just two days after undergoing some internal testing.  The day before the event, my body was telling me that it was tired.  And clearly, the next night would require a lot of me physically.  But instead of telling the organizer that as feared, I was not up to it, I sucked it up and did it anyway.  When I got home, as happens often, I just collapsed with fatigue.

And so my own personal relay continues, passing the baton from one event to the next.

Birth Of A New Campaign


One thing I take pride in, is that when I make a commitment to something, 99.9% of the time finish what I set out to do.  It does not matter what else I am going through, especially with my health, I do my best to never let that interfere.  Admittedly, it has to be something serious to lay me up in the hospital (like my heart surgery), otherwise you can count on me being there.

So, on my way home from the hospital yesterday, fellow candidates and the rest of my school board campaign members were meeting to discuss future events and decisions, as well as prepare for the first leg of Pennsylvania, filing petitions.

Three out of the four of us ran for school board locally in 2011.  We fell short by narrow margins (less than 200 votes out of 70,000 available votes which shows those who think their vote does not matter, guess again.  199 people decide to come out and make a difference I would be sitting on the school board by now.

I got to our meeting a little later as I knew would happen.  The first order of business is filing petitions.  In order to get on our state’s primary ballot in May, I need to get ten signatures from voters in my political party.  But since school board is non partisan, there is the ability to cross file in the other major party.  So my task is then to have someone from the other party take my petition around for ten signatures from that party.

There have been others in the past who have run against our current board members, but because of this cross filing process, and with enough candidates on both sides,  Without a full slate of candidates, any uncontested slot following the primary was an easy step through the primaries.  In May of 2011, the four other candidates with myself forced a general election with five candidates versus five candidates, incumbants versus challengers.

I will get into issues later, and there are plenty of them.  But one thing I will make perfectly clear.  My purpose for running for school board, including the prior election, is to protect my childrens’ education.  By protecting their education, others will hopefully also benefit.

So my goal beginning next Tuesday, is to have a minimum fifteen signatures from each party.  The reason is simple.  Even with a school board election, candidates are known to challenge the validity of signatures.  The reasons could be as simple as using a mailing address instead of physical address.  Accidently writing the wrong date with the signature is enough to get that signature as well as other signatures, nullified.  Using “ditto” marks as in living in the same municipality will scratch out the signature.

Typically this will happen in the bigger elections that require many more signatures.  An election that requires a thousand signatures or even two hundred fifty you would think would be convincing enough.  But with the exact number of signatures, having even one nullified, can end your campaign.

Our efforts in 2011 caught the incumbants’ attention.  It was historical to have two incumbants tossed from their seats on the school board.  We were all relative unknowns except for two who had run in a prior election and lost.  We whole heartedly believed that because we concentrated our efforts with each other, that strength carried through the general election.

This year, we hope to do the same thing.

The rest of our meeting, we reminisced on what we did in 2011, and what we will need to do in 2013.  There is no doubt that people have probably grown weary of elections after the huge effort of both candidates this past presidential election.  Contrary to scale, school board elections in Pennsylvania have just as important impact on households.

In the coming months, there will be campaign appearances, fundraisers, and just having people come up to us because they recognize us.  I consider this a priveledge even just to run for the school board.  There are many who could not wait for two years to pass, when the other half of the board would be up for re-election, and then find out if there would competition again.  And there will be.

That is what makes this process great.  That is what makes this country great.  Opportunity and service.

Thoughts On My Back


This one is for you my friend.

As a long term survivor of Hodgkin’s Disease, cancer, I have learned alot medically, and about my survival.  I have learned about risks, protocols, and needs.  I have been through much worse in my life with radiation and chemotherapy.

If you have never been a patient before, there are a lot of things that go on in a patient’s mind, at various points of procedures.  The mind races as people hustle around you, roll you, and all of a sudden choose that moment in time to mass introduce everyone to you, which if you are going under anesthesia, will not remember them anyway.  Your mind is consumed with what to expect following your procedure.  Almost as in real life outside of the hospital, inside, I do not take the time to look around, notice my surroundings, relax, enjoy, appreciate.

This story is dedicated to my good friend who takes notice and appreciates her surroundings.  This is more than just a child laying in a grassy field looking up at puffy skies.  This is a grown woman, possibly with things of her own on her mind, but as she travels, she takes photos and speaks about the very details that she notices during her visits.  She slows down.  She enjoys.  She relaxes.  She appreciates.  And then she recalls, in vivid details.  So Cathy made the suggestion to me, as I have seen my share of ceilings, what do I see?  What do I think about?  Interesting that I had never really given it much thought until now.  But with a pair of procedures coming this Wednesday, I started thinking.  Hmmm…

So yesterday, I payed attention to my first ceiling.  I say the first ceiling because once I was rolled into the procedure room, all I noticed were the multiple monstrous digital flatscreens.  If my throat did not hurt right now, I would probably grunt like Tim “The Tool Man” Taylor.  (All together, I know you are doing that right now.)

But this is the first ceiling I looked at, my holding room.  Wendy looked at me funny because I was staring at the ceiling, and she asked me if I was counting ceiling tiles.  When I told her “no,” for some reason, she referred to the light grate which of course was about one and a half foot wide, and two feet long.  The argument, how many squares total were in the light grate.  If you have Facebook,  then you have seen this puzzle several times where you have to count how many squares actually exist.  Initially, it looks like sixteen or something, but then you look at the squares that are formed by the other squares and so on, the number comes out to be in the twentys.

We never did get to finish calculations because just then the techs came in to roll me to the procedure room where I would undergo my first colonoscopy and second endoscopy.  You would think that would have been on the forefront of my mind.  But thanks to my friend, the techs were now standing there, staring at the ceiling.  Counting.

Okay, seriously, I want to get this done and over with, the colonoscopy, not square counting.  I will do the math at home, or maybe I will not.  Maybe I will give it a shot for my next procedure.

For anyone wondering how many squares there were?  There were six across, and seven long.  So the answer is not 42.  You do the math.

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