Paul's Heart

An End Of An Era

In a little more than a month, my youngest daughter will be done with elementary school.  I spend so much time, going back through time in my mind to the days that both of my daughters were first placed in my arms to today.  My oldest has just about completed her first year of middle school, which is worthy of a post itself.

I look back at my own childhood, and the memories I have from elementary school, and the many teachers that had the first major impact on me, getting me to enjoy school.  And for me, it is that simple.  But now, as an adult, elementary school worth took on a whole new meaning.

I could not have been any more excited for the first days of school for my daughters.  First, I would ask off from work so that I could not only see the girls off to school, but took as many photos as I could of those first days, leaving the house, getting on the bus, to even entering the school.

From those “first” moments, my life as a father would change forever.

Monday begins Teacher Appreciation Week around the country.  And I do not think you will find anyone who appreciates teachers as much as I do, and my daughters are only mid-way through their education.

I remember all my teachers through elementary school, mostly by name, not necessarily for what they did for me, except for one, Mrs. McGuire.  I was quite sick and needed surgery during my first grade year.  She visited me and helped me with my homework while I recovered, yes, beyond the 9-3 school day.

My oldest would start elementary school officially in 2009.  The school district was going to be entrenched in a brutal contract negotiation, that would eventually result in a strike by the teachers.  Like many uninformed parents, I was irate that the beginning of the year was going to be delayed, which of course was going to have a last minute impact on finding child care to substitute for the absence of school.  “Those damn greedy teachers!  How dare they?”

But as quickly as those emotions came out, the school board released a full page color ad of the salaries of the teachers and union personnel of the district, of course to enflame the community.  My past experience as a victim of bullying, I saw this for what it was, bullying.  And immediately, that flipped a switch in my mind that something else was going on.  It was not as simple as it seemed.

In the meantime, the teachers returned back to school, and on the very first day, on a Thursday, at 7:45pm, and there is a reason I remember this exactly,  I received a call from my oldest daughter’s teacher.  She wanted to discuss a concern that she had about my daughter’s cognitive levels, especially with her being internationally adopted.  We spent more than 45 minutes on the phone.  Now keep in mind, this teacher had two young children of her own, but contrary to the popular myth, teachers days do go beyond the hours of 9am to 3pm.  Instead of spending time with her own children, she was helping me, to address a concern with mine.  There are countless examples of this throughout both of my daughters educations.

Teachers have almost as important role in the lives of our children as we, the parents.  Teachers spend more time during the awake hours with our children, not just teaching our children, English, Math, History and such, but often times, lessons about life that we do not have the simple answers to, many times uncomfortable.

I will never forget the care given to not just my daughters, but to all the students who would hear of the horrible massacre of children at Sandy Hook Elementary School.  Even small children know that they should be safe in school.  Sandy Hook changed that not only for the children who heard about the horror, but teachers soon found out, that in spite of the slaughter at Columbine High School years before, violence could even reach the elementary levels.  Now, teachers not only put their heath at risk with contagious germs and such, but were now expected to physically guard our children.  I am certain, this was definitely not dealt with in college when they studied to be a teacher.

My personal experiences with the teachers at my daughters elementary school also had a major impact.  The uncertainty of my health, led to many instances of an emergency phone call to the school, with last minute instructions for care, transportation, and sometimes, explanations.  And every time it happened, and there were a lot, the teachers responded with such assurance and professionalism, which made each incident a lot less traumatic, not having to deal with the stress of the care of the girls.  I always knew they were in good hands.

And no parent wants to get the phone call, “your daughter’s school bus was involved in an accident.”  But I got one of those phone calls, and again, the school staff handled everything perfectly.

During that first year of my oldest’s school year, I paid a lot of attention to the negotiations of the teachers contract negotiations.  I began to attend district meetings, noticing more things that did not make sense, and clearly came to the conclusion that the teachers were being made scapegoats for a situation that the school board had created.  It was very easy to fool the taxpayers who were just as uninformed as I had once been.  My voice by itself, along with a barrage of letters to the local newspaper opinion columns was not enough.

And so began my short political career, as I decided I would campaign for school board in the next election.  Along with four other candidates, and a great campaign committee, I spent the next six years, dissecting the business and activities of the school district.  Clearly things could be improved, but I definitely felt it was not the fault of the teachers as it was being made to believe.

Along with my school board campaign, I also became more involved in my daughters school activities, participating in their parent organization, an anti bullying campaign, and even managed to have some extra curricular fun, volunteering as the “official” school disc jockey for fun events made even more popular with fun music.  My daughters were split on just how cool it was to have “dad” DJing, but their friends always encouraged them that their “dad was cool!”

Over three years ago, the direction of our family took a dramatic turn that none of us had ever expected, divorce.  And with that, came separation from my daughters.  But the staff of the school, as they had done the previous years, stepped up as they always had, realizing that even the distance between my daughters and I, I was going to continue to be involved in my daughters educations, as much if not more, as when I had been local.  Teachers, guidance counselors, nurses, the principal, everyone has done everything I could ever ask, when it came to helping me, help my daughters with their educations.  From studying for a test, to making sure homework got done, the staff has always been there.

It is Teacher Appreciation Week.  And you better believe it, I appreciate the teachers that my daughters had, teachers that other children have, friends of mine who are teachers, and the ones who started it all for me, my teachers.  Teachers are full time workers who put their health and their safety at risk every day.  Their day begins when they step through the entrance of the school, but does not end, well beyond exiting those same doors.  Teachers have homework or tests to correct, preparations for the next day lessons, and of course, there are the personal correspondences to reach parents whose children are struggling in school.  I know there is more that they do, but I can only talk about what I have experienced.  I am not a teacher.  But they know what all they do in a day for children.  And so for that, I publicly say thank you.  And keep up the good work.

And to the staff at my daughters elementary school, I am so thankful to each and every one of you.  My daughters have so many positive memories.  You kept them safe, and as I found out with my oldest daughter in her first year of middle school, you did a great job preparing my oldest as she has done well so far after three marking periods.

Sepsis – A Silent Killer

Today marks the 5th anniversary of my first run-in with sepsis.  I had heard of it before, through other cancer survivors.  I remember the scary stories from them, one fellow survivor actually developing septic shock, the 4th stage of sepsis, which normally leads to death.

Before I get into the details of sepsis, here is what transpired five years ago.  I went to bed around 11pm on Sunday night, following a very busy, yet uneventful weekend of activities, including celebrating my daughter’s birthday.  I had just brushed my teeth, changed my clothing, and went to bed.

I woke up at 3am, violently vomiting, rushing for the toilet, leaving a trail of puke as I finally collapse by the toilet.  I do not really recall the moments that followed, but I do know that I ended up in my bed, again, losing consciousness.  Again, I wake up, this time screaming in immense pain, like I had never felt before ( author’s note – I have had open heart surgery, abdominal surgery, and a kidney stone – so I know levels of pain).  I would pass out again.  Another brief moment of consciousness, I would see paramedics and police in my bedroom, though not sure if I was hallucinating from the pain or whatever was happening, but one of the paramedics looked like my former brother-in-law, though I never knew him to be an EMT.  Blacked out again.  The final thing I remember just before being rolled out of my house on an ambulance stretcher, was seeing the scared expressions on both of my daughters’ faces, horrified as to what could be happening.

I am not sure what time I finally came to.

But when I finally awoke, a nurse explained to me that a doctor was coming in to talk to me.  I asked her what was going on.  She just explained that I was on high dose antibiotics and that I had pneumonia in my left lung.  As I have come to learn in my survivorship, I can read when someone is keeping information from me, and I knew the nurse was not being completely up front.  With the doctor coming in just moments later, it did not matter.

The doctor confirmed that I did indeed have pneumonia in my left lung, but they were waiting for blood cultures to come back to determine the cause.  But definitely confirmed, I was suffering from severe sepsis.  In fact, one of the main tests to confirm, my lactate level was well over 4.  Only one stage left which I was quickly approaching, septic shock, which has an 80% chance of mortality.  But the doctor was confident that there was time for me to recover.  With sepsis, survival is all about timing.

Complicating my diagnosis, are several issues that I have to deal with from my cancer survivorship.

I have no spleen which means I am more susceptible to infections and illnesses.  Developing pneumonia made no sense as I did not have a cold, no cough, no sign of anything respiratory.  But discovered during the diagnosis, the lower lobe of my left lung is “dead”, likely destroyed from 4000 grays of ionized radiation, and the chemotherapy drug, Bleomyacin.  Also, with my left lung, I have several unidentified “spots” on that left lung, which are followed up annually to see if they develop into cancer.  But none of this made any sense to me that it could lead to lead to pneumonia.

Further testing would reveal the accurate diagnosis, aspiration pneumonia.  What is aspiration pneumonia?  Aspiration is defined as “inhaling.”  So what exactly could I have inhaled?  Though the detailed answer is going to be saved for a different post, the culprit is my esophagus, which was weakened from radiation damage as well as gastrointestinal issues from my treatments decades ago.  There is a malfunction with my esophagus, called a “Venker’s Diverticulum” which traps food and liquid, which of course, normally breaks down further in the digestive process.  Unfortunately, with this DV, the remaining bacteria in my esophagus was inhaled into my lung, which turned into a raging case of sepsis.  Which explains why I never felt anything coming until it actually hit.

The truth is, most victims of sepsis have no idea that they have it, nor did I.  That is why this disease is often called a “silent killer.”  And up until recently, most emergency rooms and doctors were not in the habit of looking for sepsis.  Many times, patients faced fatality because of the lack of diagnosis, which appears to occur a lot more than once believed.

I have written about sepsis many times.  And I will keep writing about it, because it is not discussed commonly enough yet.  Too many still do not even know what it is.  And just like me, you can feel fine one minute, and hours later, be placed in an intensive care unit.  My personal doctor scolded me, as testing confirmed that I was actually septic for at least 48 hours before I had been brought into the hospital.  And with an illness that depends on a timely response for survival, I could not help but wonder, how close I actually came to dying.  Many friends and followers have written to me about their experiences with sepsis, neither of us were aware.  And this is where you, the reader, can make the difference.  Share this article.  Learn about sepsis.  Make a difference.

Pneumonia would return again nine months later, in both lungs, again, in the same manner.  No prior warnings.  For me, there is nothing I can do to prevent it from occurring due to the permanent irreversible damage.  And given my tolerance for pain and discomfort, I rely on my ability for regular follow-up appointments with my doctors.

If My Survivorship Will Mean Anything… Part 4

Please go to “Paul’s Heart” on Facebook so that you can view the actual video recordings with Bill Shirkey.  I was not able to upload them on this page.  The female voice you hear in the background is Michael’s mother who accompanied me to the interview.

Again, I want to be perfectly clear, I AM NOT SAYING NOT TO USE ADRIAMYCIN OR ANY OTHER ANTHRACYCLENE.  These posts have been about showing the need, and the benefit of technology that is available, but unfortunately not being used by EVERYONE and it should be.  It is unacceptable to hear the words “not cost effective”.  Tell that to Michael’s mother who today is recognizing the 3rd anniversary of her son’s passing.

Please, whatever form of social media you use, we, as advocates, patients, and survivors can make a difference for those who have no idea what is happening with their bodies, and for those about to face this journey.  Like the expression goes, “one person can make a difference.”

I have enough followers and readers of “Paul’s Heart” to make that difference no matter what corner of the country or area of the globe you live.

Michael and I shared a lot in common.  Our birthdays were just one day apart.  We were both diagnosed with Hodgkin’s Lymphoma around the same age.  We both got to hear the word remission.  We both suffered heart damage from the treatments we received.  But that is where the similarities end.

On a personal note, and this is something I struggle with every day, I went through so much more in regard to chemotherapy and radiation (he never received radiation like I had).  I am here.  Michael is not.  And Michael is not the only one.  This is just a small part of the survivor guilt that I have carried with me most of my survivorship years.

Which is why I have titled this series of posts, “If My Survivorship Will Mean Anything…”

Please, I cannot stress enough the value of the information that I have researched and shared with you.  It is now up to you.  Be your own advocate.  Be the advocate for someone who is not able to speak up for themselves.  Do not take “no” for an answer to take this extra precaution when dealing with a chemotherapy or radiation treatment that knowingly has the potential for heart damage.

Michael, this is for you.