Paul's Heart

Life As A Dad, And A Survivor

15 Jul 2021

An Important Clarification And Distinction


It is hard to believe that we are more than a year and a half out, and we are still completely split in opinion, support, and action when it comes to dealing with the Covid19 pandemic. While this is literally a global issue, in the United States, we have the ability, the knowledge, the skills, to at least get a grip, to confine it, to control it, yet we cannot.

The problem is not a new one. But between special interests, social and right wing media, the efforts could not have been made more difficult and confusing. It began so badly, that even political positioning took a priority over one’s health.

It is July, 2021, over a year and a half into the Covid19 pandemic, over half a year now, our best effort to deal with the Corona virus, several vaccines available, and we still cannot see the end of this pandemic as numbers of cases begin to rise again. Science stated, “do these things, wear a mask, social distance, wash your hands, and we can get this under control.” But the response by too many was after expecting people to do the right thing, “nope, I am free to do what I want and I won’t do those things.”

Factor in the anti-vax movement, which admittedly, has been around seemingly forever, just during Covid19, has gotten extremely loud and visible. The problem with the anti-vax movement is that they are all or nothing. Yes, every medicine, every vaccine comes with its risks. HEEEELLLLOOOO… I made the choice to be treated for cancer, by experimental treatments and I am here thirty-one years later, but I do have issues from those treatments. I could have been anti-treatment, but then you know what I would be? DEAD!

And that is the problem that I have with the anti-vax movement, right wing media, and all of these other special interest groups. Just the other day, on one of the extreme right news channels, one of the commentators actually stated, “maybe nature meant to create things that wipe out entire civilizations, and we are interfering with that.” Seriously? This person believes that we should just let Covid19 rip through the globe and the world resets? I should not be surprised as it was a similar mentality in living during the beginning stages of the AIDS crisis back in the 1980’s.

So, let me get set. My position has always been, that I support the vaccine. At the same time, because of my health history, I know that my vulnerability to Covid19 is extreme, but I also know that I will have issues with the effectiveness of the vaccine. And sure, there is a part of me, though no longer a dominant thought, that I was uncomfortable with the process of the discovery and development of the vaccines that are currently available.

To be clear, my opinion is my own. I do not learn important details about dealing with Covid19 from media resources, the details come from my own doctors who I trust completely, more on that in a minute. But I do have pillars that support the decisions that I make, and that does include facts reported by reputable news sources (typically central in political lean), science, and common sense.

For instance, did you know the actual discovery process for the Corona virus was actually started around ninety years ago? To grasp this concept, and put as simple as possible, just as the flu, and other diseases, it is only the strains that change over the years, but the foundations of the base virus itself are still the same. So, even though we are dealing with Covid19, named after its discovery in the year 2019, according to USA today (https://www.usatoday.com/story/news/factcheck/2021/01/21/fact-check-covid-19-vaccine-nearly-20-years-making/3873247001/), the Corona virus has been around since 1930. And even more familiar to our memories, the prior most famous Corona virus, was SARS, back in 2003. This one stands out to me in my memory, because it was in less than a year, I would travel to adopt my daughter. So yes, the development of a vaccine does take a long time, but science did not just start working on this vaccine in 2020. It was started almost two decades ago. So when the president created “Operation Warp Speed,” it was definitely meant to make the process go faster, but the truth is, the discovery part of the process was already there, it was just the research of the safety and effectiveness of the vaccine, which cannot be sped up because clinical trials take time to occur, but also the bureaucratic process that really takes time.

Fortunately, studies were showing that the vaccines that were being developed worked, and were safe, and that was based on healthy patients, with no comorbidities (that is how clinical trials work, you have to be otherwise healthy). Statistically, scientists do not expect 100% results and when it comes to vaccines, a success range of 65-75% is considered good. Two of the top contenders against Covid19 have success of well over 95%. Historically, this is unheard of.

But that will not stop someone from protesting the success of the Covid19 vaccine, instead with a reference to “VAERS”, the Vaccine Adverse Event Reporting System, established by our own government. Those that use this website as the backbone of their arguments against the vaccine make it awfully convenient that they forget one major issue, rather a disclaimer (https://vaers.hhs.gov/data.html). You see, anyone can file a claim on VAERS, it does not have to be the doctor or administrator of the vaccine, it could be a patient. The fact is, there is no verification of any claim. There is no proof provided. Just taking someone’s uninvestigated and unproven word for it. VAERS states, “VAERS reports alone cannot be used to determine if a vaccine caused or contributed to an adverse event or illness. The reports may contain information that is incomplete, inaccurate, coincidental, or unverifiable. In large part, reports to VAERS are voluntary, which means they are subject to biases. This creates specific limitations on how the data can be used scientifically. Data from VAERS reports should always be interpreted with these limitations in mind.” Using VAERS as a reason to not get the vaccine, is definitely flawed.

Then there is the misconception about what the vaccine is really for. While the vaccine definitely shows that it can prevent contracting Covid19, it definitely shows the benefit of lessening the severity such as requiring hospitalization or death. And that alone should be a pretty strong motivator. The science is still out if it will prevent carrying Covid19 asymptomatic. And there are known cases of still contracting Covid19 after the vaccine, though either with few or no symptoms. One thing is for certain, deaths attributed to Covid19 in recent weeks, average well over 97%, all were unvaccinated. That is a damning statistic.

But here is what the vaccine does not do (all addressed by the CDC). It does not make you magnetic. It is safe to get pregnant. It will not alter your DNA. It will not cause you to get Covid19 (if you contract it, you got it from someone or somewhere else, that is the only way).

Alright Paul, a lot of info here, so what does that have to do with your concerns and not getting the vaccine… yet? As I have previously mentioned, as a result of having had Hodgkin’s Lymphoma, and one of the procedures used to diagnose me, left me without my spleen, I am what is referred to as “immuno-compromised.” Simply put, I have a hard time fighting illnesses or avoiding them. But as I also found out many years ago, my body does not make antibodies for vaccines without boosters or additional vaccine. In my childhood, I was given the usual vaccines that were considered lifetime. During my Hodgkin’s days, in preparation for diagnosing, staging, and treatment, I was given additional vaccines for other illnesses, they too were supposed to be lifetime.

Surprise! They were not lifetime, at least, they were not any longer. Worse, once discovered that I no longer had protection, I would need multiple doses, of what at one time was supposed to be one and done forever, to get immunity. And that is where I am at right now with the Covid19 vaccine. There is no schedule for more than just the two shots. There are no plans for boosters, though there at least is discussion and studies now being conducted on additional dosing.

The position I have taken, is that for me to take the two doses, and the likelihood of them being ineffective, do nothing for me physically or mentally. I would not be able to resume non-mitigation life with the false sense of security provided. And with no plan or approval for additional doses if needed, when the option would eventually come out, would the process still be viable, or would I have to start all over.

There are two confusing issues right now concerning this. One, the talk over boosters. Pfizer, one of the vaccine makers says it wants Emergency Use Authorization for boosters. Of course, our government wants the concentration on getting more people originally vaccinated before concentrating on boosters. Then of course there is the cynicism of Pfizer’s perceived financial benefits of booster approval being a priority.

The other confusing thing, not lost in all of this, the vaccines are not “approved” yet. Sure it is just a formality until all the red tape is completed, but with hundreds of millions of doses administered, and hardly any adverse or serious confirmed reactions, these vaccines will do what they are supposed to. In other words, we need those vaccines officially approved, and that will take away yet another argument by those hesitating or refusing to get the vaccine.

As I said, I am for the vaccine. Logic, science, and common sense are guiding me when I will finally get it. But as our nation sees an extreme and quick uptick in new cases due to the more dangerous strain, I may have to alter my thinking a bit. Because, while I have been able to “live” among Covid19 for this long and not face a Covid19 diagnosis, the odds are closing in on me, especially as I live in an area that is notorious for denial of not just the vaccine, but even the virus itself, and the politics of the individuals. While I respect people’s rights to have their opinions, the reasons behind their choices in this situation are completely misguided, delusional, and dangerous.

The last time we dealt with something so catastrophic like this, was polio. And do you know why we do not have an issue with polio and have not had an issue with polio for decades? Because we had a vaccine. We did not have a country whose citizens decided that it was acceptable for millions of people to die from something preventable to avoid a vaccine.

Just this morning, I saw an interview with Dr. Tom Frieden, former CDC director. The question was put to him, specifically about boosters for people like me, whether battling cancer, history of cancer, or compromised immune systems. He replied that there needs to be an understanding, there is a difference between a booster, and a schedule of a third shot. A booster is used when the coverage from the vaccine is waning. But what is being studied is the “schedule” of what it takes to get to that level of immunity. When and should a third dose, or possibly a fourth dose be given? And would it be safe? While I have been stating this concern for a long time, this is the first that I have finally heard it mentioned. And I am glad that they are now looking into this.

I have two resources that I rely heavily on for when I make this decision, both personal doctors of mine. One, anxiously waits for me to go ahead and do it, because he definitely feels I need it, and I do not disagree. But my other doctor agrees with how cautious I am being. But when these two doctors align, that will be my time. Not the media. Not opinions. Facts. Science.

Posted in Bullying, Cancer, Education, Family and Friends, Inspired By..., Politics, Side Effects, The Heart | Leave a comment
10 Jul 2021

SQUIRREL!


In the movie up, the canine character, named “Doug,” is easily distracted by furry rodents, and lets us know in the movie, stopping his conversation mid-sentence, yelling “SQUIRREL!” focusing his sole attention on the squirrel, forgetting what he was in the middle of.

In 2009, I made a conscious decision, to enter local politics as a school board candidate. I had no experience as a politician, and the only personal connection that I had with government at that point, was that as a house page for the capital of Harrisburg in Pennsylvania when I was in 7th grade for Representative Joe Zeller. My platform for school board was clear and not political. My campaign would be about “anti bullying.” Sure, there would be other responsibilities associated with the position if I would get elected, but this was what was most important to me, at least in the beginning.

I would get scolded by both members of political parties as I was an independent, stating proudly, “because I hate politics and politicians.” But if I was going to give up a major part of my personal life time, I was going to make sure that I got done what was important, and not get tied up in the politics.

Even the campaign signs would reflect this was not about politics for me. I was willing to represent everyone. After all, bullying in schools had nothing to do with Democrats or Republicans. After testing the waters for approximately a year, an official campaign was kicked off. And in true political fashion, it was not soon after, the political attacks came out all of us. Again, keep in mind, I had no political history, but that did not stop innuendo and rumors from getting tossed around. In fact, one of the incumbent’s mailers, actually depicted a picture of a gun, accusing myself and my campaign mates of committing “robbery” in the form of taxes. Offensive as it was, they were proud of their effort, shocking bragging about it in televised interviews.

I expected ugliness, just one of the reasons I hate politics and politicians. But it was the morning of election day that threw me for a loop. Unbeknownst to myself or my campaign, two days prior, an individual had circulated a flyer, by himself, in the parking lot of his church, a large Catholic church, listing all of us on our school board slate, making claims that we all supported abortion.

The issue of abortion had absolutely nothing to do with the school board director position really, because a policy already existed with the school district, pretty straight forward, and I supported it. But as none of us felt abortion had anything to do with the office we were campaigning for, we never discussed it. The fact is, I do not talk about my position publicly, and for the most part, privately.

But that morning, as I began my tour visiting elections polls, the very first voter I ran into, without even saying “good morning” to me, just blurted out, “what’s your position on abortion?” And as I tried to explain that abortion had nothing to do with our campaign, that we had a platform in great detail, it soon became clear, that instead of actually dealing with issues of the district, this last minute distraction, a “squirrel” was going to end up being a serious concern as that would become where the focus would end up.

A couple of years later, we were more prepared for the “abortion” position during the election, as nothing had changed on our part or our platform. But we were better prepared to deal with this distraction.

This kind of thing happens in all realms of politics, whether local, state, or federal. It is why I hate politics. Because this crap is what keeps things from getting done. This year has a new “squirrel,” “critical race theory,” or “CRT” for short. This one is a major “boogie man,” but is actually not new. Many years ago, something similar came up, but it did not have the controversial name. But the motive was clear. One political party, the Republican party, felt it no longer wanted black history taught in schools. Why? Because they felt it reflected poorly to teach our children just how ugly our past was, and that was starting our kids off with a bad attitude.

And honestly, it is not that black history was actually being taught in our schools in great detail to begin with. Sure, there were small mentions about slavery and Lincoln freed the slaves, and Martin Luther King, Jr. was assassinated. That was pretty much all I remember, and that was back in the 1980’s. It was not until over forty years later, that like many, I would learn about the Tulsa massacre, Juneteenth, and other dark historical events of the US in regard to black history. And that is all this is about, teaching history. But just as “affirmative action” was actually meant to help produce some racial equality, for many, it actually had the opposite effect. And those that were against it, are also likely against CRT today. And why?

We should all be upset with the senseless murders of unarmed black individuals, so many to mention. Instead, many, especially CRT supporters are quick to make excuses for the murders, putting the blames on the deceased. And because support for the victims has reached global levels. And this has made certain members of society feel uncomfortable. So the heat gets turned up to slow down and/or eliminate this support. And this is where CRT has become this year’s boogie man if running for public office. The problem is, the average voter has no idea what CRT actually is, and politicians do not either, or just simply do not care. They have found their platform to get votes.

My former running mates found out this year, this is their “abortion” issue to deal with this campaign. CRT. And what is actually being done with it? The CRT controversy has made its way all the way down from the federal level to the local level. Those hearing the cries have no idea what CRT even means, but give it their full attention because leaders tell them it is the worst fears coming true. The politicians taking advantage of this fear, are planning on riding everyone’s ignorance to either a new term or re-election.

But what if CRT was actually nothing about nothing? No, there is such as thing as critical race theory. But its literal purpose is directed toward the law, and therefore mainly taught in colleges if available at all. But certain politicians want us to believe it is happening in our schools, from grades Kindergarten through 12th grade. Politicians and spokespeople on certain networks pushing this fear want us to believe that:

  • a religion of secularism and guilt (a device meant to make whites feel quilty)
  • denial of critical thinking
  • working to change or overthrow infrastructure
  • overturn the advances of human civilization
  • teaching to hate the United States and to hate each other
  • anti-Christ indoctrinations
  • destroying society using gender, climate change and immigration
  • and even the Freudian Oedipal complex has been referenced with mixed race marriages

I have two daughters still in school, and I assure you, that none of this garbage is even being mentioned in school. I have asked them, what they do get taught as far as race goes, and I have been told “some history,” such as slavery, the Civil Rights movement, but really only as “matter of fact” or honorable mention. Nothing in great detail. There is no issue with teaching world history and the atrocities that other nations have in their past from the Holocaust to the war in Yemen just to name two.

But here, in the good ole ‘Murica, we have our own dark past with Native and black Americans just to name two races to this day, still facing hurdles, harassment, and violence. What is the big fear of teaching things such as:

  • the slave trade
  • slave holding
  • the Emancipation Proclamation
  • the Great Immigration
  • Juneteenth
  • 1919 Elaine Massacre
  • redlining
  • poll taxes
  • Jim Crow
  • segregation
  • the Little Rock Nine
  • Brown vs. Board of Education
  • the Kerner Commission
  • reconstruction
  • lynching
  • Opelousas, Louisiana
  • Colfax Massacre
  • Tulsa Race Massacre of 1921
  • Emmett Till
  • The Creole Rebellion
  • April 1712 Revolt
  • Rosa Parks
  • Greensboro Four
  • The Civil Rights Movement

And that is not even all when it comes to black history in the United States. Everyone is to be assumed they know who Martin Luther King, Jr. is, so no need to teach about him either right? But what about other races? The Trail of Tears (Native American History), violence against Italians and Irish, and of course, Asian Americans, who most recently have been targeted because of the false correlation with Covid19 just because politically the false premise was pushed by some.

We are a great country, one of the best. But we also have an ugly past, which clearly certain aspects continue today. And it has nothing to do with CRT that politicians are pushing to scare everyone, because blocking the education of our nation’s past is not enough, we simply still have people who believe in the ways of the past. And every time there is a discovery of a mass grave site, a murder of an unarmed black person, swastikas painted on a synogogue, or an Asian American is assaulted because the perp cannot differentiate between science and racism, every time, it is going to be because we did not learn from our history that these acts are wrong. Those of us who have learned, have no problem denouncing the violence against any human being, regardless of color or race. We have no problem calling it out by name, because we learned that it was wrong. Those in our personal lives also knew that it was wrong, but unfortunately, there are still those in households who still believe the year is 1950. And it is their thoughts that have been passed down to the generations pushing the boogie man of CRT.

Teachers are not teaching the horrific things that were mentioned above from the particular network. And they barely get to teach history at all and that was before all the attacks on them from politicians, and now angry parents who most do not even know why they are pissed off about it.

But the argument against CRT, is a quick and easy talking point for politicians to use for their campaigns. In the end, nothing will have changed, but people will have been foolishly scared to vote a particular way. And that is unfortunate.

Posted in Uncategorized | Leave a comment
07 Jul 2021
2 Comments

You Mean There Is More?


I have survived cancer, Hodgkin’s Lymphoma, over thirty-one years. I guess that would qualify me to refer to myself as a “long term cancer survivor.” But if you talk to me about my survivorship, while I acknowledge my longevity, when I use the term “long term cancer survivor,” like many others, the term has a much different meaning because as it turns out, our battle never really ended.

I was done with my treatments on March 3, 1990. This is the date that I officially recognize as being “done” with cancer. I was actually declared in remission several months early, barely half way through my treatment regimen. As far as the date any of us survivors use, it is one’s preference.

In April of 2008, eighteen years later, I discovered that my battle was not over yet. Though I had seen others battling what is described as “late term developing side effects” from their treatments, up until that point, I had none, at least I was unaware of any. And why would I be? I was long not being followed up by my oncologist for anything. But on April 17th, 2008, a near fatal heart condition was not only discovered, but the cause revealed so much more.

When you get a sunburn, that is from radiation. Soon after you notice it, it may start to blister, and eventually peel. And that is just what you see. The sun’s rays do not penetrate deeply into the body to the best of my knowledge, so we only get to see what happens on the outside.

Radiation used to treat cancer however, that does penetrate into the body. It has to in order to destroy the cancer cells.

You can see from the photo above, a burn from radiation treatment, and this is likely very early on, the only way to tell that this is not “sunburn” is because of the skin pattern. Pictures of radiation burns from treatments only get more extreme and difficult for most to view. My point is, just like the sun’s burns, radiation burns are visible on the skin. But unlike the sun, radiation treatments reach below the skin. And of course, below the skin, we cannot see what is “cooking.”

Sunburn usually resolves itself in a short period of time, likely a week (unless you are a skin cancer risk). But treatment radiation is a different situation. Because of the dosage of radiation used, a term called, “half-life” comes into play. Simply put, “half-life” is how long the radiation will last in the body once exposed. Because of the massive amount of radiation used to treat cancer, unlike that from the sun, which skin has a chance to recover quickly, if you are a cancer patient treated with radiation, no matter how many years out it has been, you likely are still dealing with the impact of your radiation treatment. That is why many of us refer to radiation as the “gift that keeps on giving.” Radiation gave us the gift of the cure for our cancer, but is also giving us so much more.

The problem, in my case, and like many before me, those of us treated before the turn of the century, medicine was either not aware of, or did not learn about the late effects from the progressive and cumulative nature of radiation damage.

For me, once my “widow maker” blockage was discovered with my heart, almost too late, it was also discovered why it happened, radiation damage. Because of my involvement with other survivors who up to this point, were “different” than me, because I was “healthy” and they were not, I was encouraged to seek out the opinion and care of a particular doctor who had studied this issue, for decades.

Long story short, after two years of visits, multiple tests and procedures, many more issues were discovered with my body and the damage from radiation therapy, as well as the toxic chemotherapy that I was exposed to. My doctor used to joke “it would be so much easier just to be able to do some sort of full body scan.” But after all this time, issues were discovered with my lungs, spine, upper body muscles, endocrine system, gastro intestinal system, and additional issues with the cardiac system (keeping it simple).

For thirteen years now, during a time I always believed I was supposed to not even have to think about my cancer, late developing issues have been followed so that doctors would know when they had to be repaired. The obvious question is “why wouldn’t they just be repaired now if you know they are there?” And that is logical. The problem is another issue for us lymphoma survivors, we have a problem with bleeding and healing. Therefore, doctors do not like to do anything with us, until they must. Think of us as human ticking time bombs.

The list of issues I deal with, more than a dozen long is more than enough. But is it everything?

That is what made me think of the quote from a professional wrestler I watched in my youth. Just when you think you have all the answers, the question gets changed.

Recently, a fellow survivor just underwent a surgery for a a major blockage, in another major artery that most of us in the non-medical world likely have never heard. But yet, this is what was happening to her. Not being followed up for the condition, it was not only discovered, but doctors had roughly no experience with the combination of the repair and the damage from radiation damage, which clearly is what cause the blockage.

In my survivorship circle, no one has heard of this particular artery, also sharing the name with a dietary disease, Celiac, but I assure you, this artery is a big one. Obviously we do not give it much thought because it is not immediate to the heart. As it turns out, there are a lot more arteries that we should be concerned about, especially if we have been exposed to radiation therapy.

It is hard enough not to have the world of medicine 100% on board with dealing with late side effects from treatments. But the rarity of issues beyond heart bypasses and valve replacement has now put a question at the top of my list next time I get to visit with my doctor. With all that is known about my health history and what I must deal with, what about the Celiac artery? But also what about the renal artery, the mesenteric arteries, gonadal artery, and iliac arteries? And will I be lucky to find the doctor who will know how to handle these issues if they come up? For those of us treating in the last century, our scattered radiation fields have left us with this possiblity.

I am waiting to hear about the recovery from my fellow survivor. Ironically, she had just gone through another major cardiac procedure less than two years ago, and clearly, though it should have been on the radar, it was not even a blip. There had been no reason to look for it. But a happen-by-chance, led to its discovery, and for her family, they could not be more grateful as serious as this was, that it was caught and dealt with before it was too late.

There is a reason I never put the challenge “what else?” out there. I do not need the challenge. I have enough on my plate, all the while balancing what is important in my life, watching and experiencing my daughters grow up.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart

Post Navigation

← Older Entries
Newer Entries →