Paul's Heart

Life As A Dad, And A Survivor

R – E – Spons – I – Bil – I – Ty

Do you see what I did with the title of this post?  I had to take a liberty and stretch it out for the proper number of beats, but it works.  I wonder how the Queen of Soul would have written lyrics to this title instead of her easily recognized hit, “Respect.”

“What I got, baby I have it.

What you got, I don’t want it.

All I’m asking

Is for a little bit of responsibility, when you are out (just a little bit).

Hey baby, when you get home (just a little bit).”

I could probably re-write the song in “parody” to message today’s crisis concerning Covid19.  Emotions are running high, complicated by fatigue, denial, misinformation, and an overall “enough already, this should be gone by now” attitude.  But it is not.  We are currently dealing with Covid19 at its worst levels, with no sign to an end, just a hopeful light at the end of the tunnel with a vaccine.  There is a problem however.  There are four huge holidays dropping on us at the same time; Thanksgiving, Christmas, Chanukah, and New Year’s.  This is the time of year that families not only need each other, but should be together.

And yet, as we enter this period, the experts tell us “no.  Don’t do it.”

We find ourselves now, as we did at the beginning of all of this, facing advice and recommendations from medical experts on what we need to do to prevent contracting Covid19, to reduce the spread of Covid19, and to hopefully eliminate the need for drastic measures to deal with any cases of Covid19.

And what did we do back then?  Not all of us, but too many, scoffed at the recommendations.  Using all kinds of excuses from “they changed their minds, they have no idea what they are dealing with” to “my freedom not to follow the recommendations.”  After all, who better to decide what is the right thing to do to live with a major pandemic, health experts who themselves were learning what to do as this was a completely new and unknown virus, or “Joe Sixpack” who believes better to believe in conspiracy theories and immortality.

Responsibility.  This word got tossed around a lot at the beginning of this crisis.  The health experts said it was our personal responsibility to follow CDC recommended guidelines.  Political hacks threw the term “responsibility” a lot more loosely, making it more up to the individual to determine what is right for them to do, and not what the CDC recommended.

I will not spend my time arguing about origin, time frame, blame, none of that.  Because that will not get us through this any quicker.  But, here is the fact, leaving it up to individuals incapable of being responsible has led us to where we are today, now, nine months later.

It was believed and recommended by scientists, you know, the ones who study viruses and outbreaks, that if the majority wore masks (and it was not even based on 100% compliance because by nature, some of us are defiant about anything for no reason), washed our hands, and kept a fair distance, we could be in a spot where this was better managed.  Yes, the sacrifice would take some time, several weeks at least.  But it would work.  We saw it happen with other countries.

We did not stand a chance.  Misinformation, and lack of leadership by example, there was no need for people to follow the recommendations of the professionals.  And so, we continued to “burn” with Covid19, never actually even leaving the first wave, but building up to a level unimaginable for anyone in this modern era for a country as advanced as ours.

But here we are again.  The warnings are stern.  Now more than just masks and distance, we are being told to “stay” away during the holidays.  And just like back in February and March, the misinformation, conspiracy theories, and goading, encouraging people to take a stand, that to give up their holiday with loved ones, is to be better off dead.

Is this where we really are?  That it would be better to get together, possibly contract Covid19, and lose the life of a loved one to Covid19, as a protest to being told not to gather for just this year?

As a cancer survivor, I know all too well, the length of time, taken away from a life, dealing with a health crisis, in my case, eighteen months.  Eighteen months that people would not visit me, spend time with me, and that many times I was physically unable to do things and go places.  This is an advantage I have with patience, as opposed to those who have not had to face this type of adversity.

But remember, in the beginning, the pushback at the thought of smothering the outbreak in the United States, just as we had seen done in other countries.  It was only going to be several weeks, likely no more than two months.  The war cries of the economy cannot handle that kind of restriction, and of course, “don’t take my freedom away,” took all hopes of getting the initial onslaught of Covid19 under control.

Nine months later, our cases are more than ten million more than back in March, and our economy is far from recovered, as we approach more restrictions, going backward from the openings that had occurred.  Please, someone explain to me, how much worse would it have been to do as thought was best in the beginning to control Covid19, than dragging it out all these months, with many months to go, the loss of lives and the struggling of the economy at levels I never would have thought I would see coming from the greatest country in the world.

We are heading into the busiest, and for many, the most important holiday season.  And it has gotten so bad, experts are telling us not to travel and visit homes for any of the holidays, stop the spread.

If you have someone in the family of older age, some think, “this could be their last…”.  There literally are any number of reasons, besides Covid19 fatigue, that we want, no, need to see our families.  And the driving factor could very well be, “their last opportunity.”  But the reality is, what is it worth to get through the holiday, only to contract Covid19, and die because of that gathering?  How many famous people have we seen, reach such a ripe age, only to be taken out by Covid19?

Trust me, I get it.  It is no secret, there is travel involved for me to see my daughters.  The above photo, was the last trip they flew before things got really crazy.  Since then, I have had to miss several visits for many reasons, all related to Covid19, whether at the beginning, when we did not know what we know now how to get around life with Covid19.  With all the precautions I take, and my daughters follow, with proper planning, I was able to have visits with them during this time.  I am one of the vulnerable to Covid19 checking off nearly every box of risks.  But, confident in having done everything I can, I believed these visits could be done safely, and they were.  The experts were correct with their recommendations.

But it is the actions of others, that I cannot control.  I know plenty of people who either denied the virus, or ridiculed the precautions.  Many got sick with Covid19, and some died.  Those that have survived the virus, there are still some just shrugging it off as “nothing”, perhaps their pride preventing them from being upfront about their experience with Covid19.  Most of the people I know that have had Covid19 all say the same thing, “you don’t want it.”

Covid19 is taking a lot from all of us, in the form of time.  My daughters being older, I am losing opportunities of their youth, restricted by the virus.  I have to balance risk along with frequency, making the difficult decision to reduce number of visits while our country is still struggling.  But as hard as it is, I cannot control what everyone else does, which means I have to take control and make the decisions on my own.  I am doing all I can that I keep from happening, not being able to see my daughters until well into the next year when they expect Covid19 to abate.

But it is my hope, with a new president, and a new attitude among the health agencies, that the messages and warnings that I have respected as the right and safe thing to do, will convince many others, we have the power to help things get better, even if just wearing a mask.  And wearing a mask does not take away your freedom.  I still have my freedom and my life.  The only ones who lose their freedom, are the ones that die from Covid19.

It boils down to responsibility.  The prior administration, and some states governors, say it is up to individual’s responsibility to do what is necessary.  And so far, that has failed, in the form of over 265,000 dead Americans and nearly 13 million Covid cases in the United States alone.

What does responsibility mean to you?

Twice The Frustration

Over thirty years of cancer survivorship, I never thought I would see the days, of better diagnostics, treatments, and extended survivorship.  I definitely did not expect to survive this long.  I wanted to.  I just did not think it was possible.  Yet, here I am, witness to progress over three decades.  I am able to look back at the progress from those who were treated before me and the barbaric methods used to treat their Hodgkin’s Lymphoma.  And as I see the many social media pages, I am amazed at the progress made in just the short time since I was treated.  Being a witness to this progress has been the backbone to my direction as an advocate.

If I had to describe myself from the advocate point of view, it would be a combination of Patrick Swayze from Roadhouse and his “never quit” fight to the death determination, and the proverbial “bull in a china shop”, not worried about the aftermath.  As long as my advocacy effort was successful.  One aspect was missing for a long time, because I never needed to worry about it.  Someone else always took care of that for me.

A moral compass, or a voice of reason.  I had a couple of those people in my life, in my early survivorship, that provided me guidance when it would ever get called into question.  But as issues with my survivorship worsened, the dials of my advocacy efforts dialed up as the need for advocacy in survivorship became even more evident.

Two posts that I read yesterday, frustrated me, horribly.  And as an advocate, it cannot be handled like the bull or Swayze.  It needs to be handled with the third characteristic, the voice of reason.  To be honest, even once things started sinking in for me the path I was on, I am still a bit uncomfortable with being looked at as a “voice of reason,” rational.  But the truth is, I have been there.  I have done that.  I have seen the progress.  I have seen the success.  For thirty years.

The two stories were all too familiar.  I see them many times throughout the year, even on the same pages.

This is the truth.  Chemotherapy and radiationtherapy are difficult, and for the most part, toxic.  But, they are scientifically proven as treatments to either extend life, maintain quality, or put a patient into remission (also considered “cured”).  With today’s awareness, people want “healthier” ways to deal with cancer.  I get it.  I have written extensively over the years about the side effects, short term and long term of these treatments.  And in the case of Hodgkin’s Lymphoma, there is a huge success ratio, not to mention the progress made in diagnosis and treating with these modes of treatments.  But they are still dangerous.

I saw the post come up, looking for alternative options.  The first thing I have to do before I respond, is research the writer.  I take it upon myself, to determine if this is someone legitimately looking for an alternative perhaps because nothing has worked.  Or is it someone who just wants to take a less toxic approach?  Or worse, is it a “troll” just trying to stir up controversy on what is normally a very helpful website?

To be clear, I am 100% an advocate for going the scientifically proven method supported by decades of research by various institutions.  That said, I do support “complimentary” methods, as long as they are approved by the oncologist.  But wait, what is the difference between “complimentary” and “alternative”?  There is a difference, though both supplements are the same.  Complimentary works along with the chemo and radiation, if the oncologist feels that it will not compromise the treatment plan.  But alternative is actually replacing the scientifically proven treatments with something, that while healthy, does not have the success that modern medicine provides.

And to make matters worse, even though those alternative methods may provide some relief and the confidence that it is working to cure the cancer, it is more likely than not, that is it not curing the cancer, just boosting the other systems of the body.  That bad thing about this, and the most important thing about Hodgkin’s Lymphoma, is timing.  The success rate for Hodgkin’s Lymphoma is at its best when it is caught and dealt with early, and quickly.  Going the alternative route first, wastes that valuable time.

Is there a place for alternative medicine?  I am sure there is.  But it needs to be studied more extensively than it has been, and it must be supported by the doctor you trust to cure you of this awful disease.  Until then, it is always my position, do the scientifically proven treatments, and if able and desired, complimentary additions.

The other post, refers to the lack of a protocol, that I cannot believe is still not widespread, no, 100% being used in treating Hodgkin’s Lymphoma.  And the truth is, this protocol should also have an impact on those being treated for breast cancer with this particular drug.  I have written many times about the drug, and the ability to monitor the side effects caused by this particular drug.  And many institutions do use the protocol, while sadly others still do not, either because they do not know, or do not believe it is financially worth while, which that one pisses me off, because it can make a difference.

Two of those prior articles if you search the archives are called, “A Call For A New Protocol” and “If My Survivorship Will Mean Anything.”  Those posts will go into the full details of an interview that I completed with a scientist who researched how to diagnose potential damage, if caused by one of the chemotherapy drugs for Hodgkin’s Lymphoma, and now breast cancer, Adriamycin, something we survivors refer to as the “red devil.”  It is one of the most powerful and successful ingredients in the chemo cocktail.  And sadly, for about 5% of the patients, it can cause issues with the heart.  And unless a patient brings awareness of any issues like shortness of breath or pain, up until recently, the damage, if any, caused by this drug, went unnoticed until it was too late, and extreme.

But as the story I mentioned above, this scientist discovered a technology that could determine if the heart was being damaged by the drug, as early as the first dose, not waiting until the end of the 12th dose.  I cannot encourage you enough to check out those prior posts.

Across the country, I know this protocol is now being followed by many oncologists.  Sure, this echo is expensive after every dose.  But do you know what you cannot put a price on?  A human life saved.  At first signal that damage is occurring, the oncologist has options available to change either dose or the drug regimen itself.

Yet sadly, either because of money or the lack of awareness, still so many do not know of this valuable tool that does make a difference.

When the author of the post wrote about her symptoms, related to shortness of or difficulty breathing, it only makes sense to gravitate to the obvious source, the lungs.  And it is likely that another drug in the cocktail, does have the capacity to affect the lungs, called Bleomycin.  But the truth is, the heart also affects the breathing, and in spite of being aware of the potential for heart issues because of Adriamycin, attention to the heart is not recognized as quickly as it should.

In both cases, I urged the need for them to advocate for themselves, to chose the treatments that are proven to work, to ask the questions that do not make sense, but someone else’s experience proves otherwise.  And casting aside the attributes of the bull or Swayze, I chose the directions of the moral compass, the voice of reason.  Dr. Banner instead of the Incredible Hulk.

That’s right.  That’s me with the Hulk himself, Lou Ferrigno.

This Of Course Is A Course In Discourse

***while this post references politics, it does not lean in either direction

It is not something unusual for me to spend time with my daughters and during that time, I make moments learning opportunities.  There is nothing better than real time examples to remember by.  But this moment, more rare than two full moons in one month, the 2nd on Halloween (and if I have to throw in the fact that it is 2020), being able to experience and explain an election with my daughters in the great details that I was taught growing up.  Like many across the country and the world, we were no different, following results and commentary.

At no time did they hear me “ooo” or “tsk” as results came in.  In fact, at no time, did either even ask me who I voted for, one of the first things I told my daughters, their vote is sacred to them, and it is no one’s business who they voted for.

But as time went on, they did not hear me complain, see me celebrate any calls made.  They did hear a lot of “what’s” and “why’s”.  You see, some day, they will get to vote.  And as one friend of mine snapped back at me when I stressed the importance of understanding the election process, “don’t tell me I am not informed about who I vote for,” she clearly missed the point.  I will get to that in just a second.

I am a registered non-party, because I cannot stand behind either one.  I know and understand the platforms of both.  But it is the ideas of my friends who support both parties that have me curious.  But in order to understand them, you have to have conversations.

There are two friends (since High School) that I talk with occasionally to get their perspectives of how others think politically.  Not in the literal sense, civil discourse is an oxymoron, two terms having seemingly opposite meanings.  Discourse is of course a debate, or argument.  And we know many arguments are far from being civil, especially when it comes to debating politics.

But I lean on these two friends, and honestly, the list is growing larger of people willing to talk, and learn how others think and what they believe.  We still disagree at the end for the most part, but we each have a respect for each other because of our tones and not only the willingness to talk, but to listen.

One constant debate we have, is the concept of the “united states” versus the responsibilities of each individual states.  They believe that the federal government should be responsible for some things, and not others, and I believe, that 50 different ideas to handle one problem, makes more problems.  But we have many of these types of discussions.  And conversations are always respectful, and we end as friends.  Civil discourse.

So when I commented on a friend’s FB page, answering to an impatient voter, spouting of one of the many conspiracy theories of the current election, “you need to be more informed of the process of the election,” she took it as “don’t you tell me that I need to be more informed about my candidate.  I do my homework.”

You can see, the first issue of dealing with civil discourse, is making sure you are on the same page.  I never once told her that she needed to do her homework on her candidate.  Although, if you are a party voter, chances are you go straight down the ballot of your party, and truly have no idea anything of the candidate, other than the initial after the name, issues of the individual candidates making no difference.

No, I was referring to the actual process itself, after the vote is cast.  And this is the problem, and the perfect opportunity to explain to my daughters, how elections work.  And because I am an independent, I can do so without leaning in either direction.

I need to offer a disclaimer, I am not an expert in elections, nor did I major in political science in college.  But I do have a simple understanding of the election process, much of which came from my own local campaigns years ago.

One simple question, what happens after you vote?  Simple answer, you count.  Now, over the years, so much has been done to suppress voting rights by humans, and in 2020, a pandemic threw a huge wrench into the works resulting in record turnout of voting by mail.  More on that in a bit.

After the count, the votes get certified by each state.  Then the electoral college meets and casts the “ceremonial” vote.  Congress confirms the vote.  And of course, then there is the inauguration, and we have a new president.  Over our years, elections have not always run smoothly, but there are processes in place to protect our most cherished quality of our democracy, the right to vote.

Until now, our most controversial national election was 2000, between Al Gore and George W. Bush.  Initially, election night had Gore leading Bush by over half a million votes in the state of Florida, the state that would ultimately decide the presidential election.  The media networks had claimed Gore was the projected winner.  But we soon were informed that the lead had shrunk to just a couple of thousand, forcing a retraction of the projection, and the controversy of the “hanging chad.”  In 2000, ballots in Florida were punch cards, and apparently, some of the cards did not punch completely, leaving the “scrap” called a “chad”, hanging, leaving the validity of the ballot in question.  There is more to the story, but you get it.  It was a clusterfudge.

The 2020 election has so much more controversial fuel, potentially causing great harm to our sacred voting process like never seen before.  Social media, main stream media, campaigns, and even the candidates themselves are causing confusion that the average voter forgets, there is a process that has to take place.

We knew there would be no result on Tuesday, November 3rd.  And it had nothing to do with the overwhelming votes by mail, but the record setting turnout.  Though honestly, for being a free country of 330,000,000 Americans, having a turnout to vote of 150,000,000 is pitiful.  The media was much more careful not to repeat what happened in the 2000 election.  Social media was much more reckless.

But unlike when I first voted, the state I grew up in, only had to deal with in-person voting the day of, and absentee voting.  But the 2020 election had now three major components in most states, including my former home state, mail-in balloting, early voting, and day of voting.  Then of course you factor in the animosity that each side has against each other, and you have a record turnout, in spite of blatant acts of voter suppression in various states.  But that is another post.

Here is when the person I spoke about earlier needs a lesson in the election process, not just picking her candidate.

Fact, our election day is officially the first Tuesday of the November.  Why on a work day, I will never know, because clearly holding an election on a weekend when most have the day off would allow more people to vote without having to take off from work.  But I digress.

Mail-in ballots come in as early as weeks in advance, and some states allow them to be received after that 1st Tuesday, as long as post-marked by then, up to a certain time window.  And given the knee-capping that the postmaster general gave the postal service, causing a major slowdown and loss of mail, everyone knew this would cause problems.  That was the intent.  Non-the-less, this is the process.

As is typical, at least as long as I can remember, TV networks at the end of Election Day would “proclaim” the winner of the election.  It is ironic that it occurred much more smoothly than with all the technological bells and whistles that we have today.  But traditionally, this is how it has been.  But officially, it is not the networks that declare the winner.  That actually does not happen for many weeks after because there are other steps in the election process to take place first.  But we are an instant gratification society.  We need an answer right away.  And really, the TV networks are not far off (usually) from the exact results, figured out by mathematicians and statisticians, winners are declared, not certified.

In the meantime, and it varies from state to state per their election rules, recounts can occur, and lawsuits may be filed to nullify results.  These are all part of the process.

It is not until the results are certified, by county election officials I believe, that they election is official.  And even then, there are still more steps until we have our next president.  Once certified, then it is off to the electoral college.  I am not going to get into the weeds of what the electoral college is, but basically, it consists of 538 representatives, one for every member of the senate and house of representatives in Congress.  Each state’s political party in power picks their EC members who are then expected to cast their votes, based on the will of the state for that candidate for president, a formality if you will.

Here is where it gets fuzzy.  Just because a candidate wins a state, electors can go rogue and vote against the popular winner of the state.  I have heard stories that it can happen, but usually does not.  The intimidation and basically thuggery that occurs with that type of attempt is overwhelming.  So, we will keep it simple, the EC goes as it is supposed to and we have a new president according to the EC.  The results have to go before Congress, and THEN, we officially have a new president-elect.  The president is called that because until the president is sworn in on inauguration day, that individual is not called the president (nor does that person possess any of the powers of that position).

There is squabbling, again, something I have never really seen in my voting lifetime, this refusal to accept the results of election day, even if proclaimed by TV networks to call the victor “president-elect.”  And it is even more absurd, that after all of these decades, now those opposed to the apparent winner, want to wait for the official steps to be taken, even if mathematically confirmed, before acknowledging Joe Biden as the president-elect, as if holding on for a few more weeks will change anything.

So, when this individual that I mentioned back at the beginning of this post took offense at my suggestion that she needed to educate herself on the voting process, she clearly missed my point.  As brief as her objection to my comment was, so was her knowledge of the election process.

But do you know who knows more now about the election process than that person?

My daughters.  They are not old enough to vote.  But they have witnessed the good and the bad of this election cycle.  And like many other teenagers, they will make an impact in 2024.  And at least my daughters will understand there is more to our elections than just casting a vote, which they also definitely understand.

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