Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Education”

Understanding Vaccine Hesitancy

First, in case any reader decides to bail, I want to state clearly up front, I support the use of the Covid19 vaccines. I am 100% behind the science that has produced three working vaccines, one fully FDA approved, one waiting for its FDA approval, and the third expecting to file for full approval, moving from emergency use authorization.

That said, like many, at least in the beginning, I had my concerns about any vaccine. Some with validity, others completely unfounded. But as I do with my health issues concerning my survivorship, I have to do research to help me make my decisions. And while science may not always be perfect, that is actually a good thing. Because that is ultimately the goal, finding the right solution to such a critical health crisis.

From the beginning, I feel this crisis was mishandled on nearly every level. But when the announcement was made about speeding up research on an engineered way out of the pandemic, I definitely feel it was wrong, at least psychologically, to use the term “warp speed,” to express how quickly a vaccine was going to be produced. Most educated people know a vaccine process takes a long time, and that is part research, production, and bureaucracy. Anyone familiar with the term “warp speed,” recognizes the association with the television series and movies of Star Trek, and just how fast the starship Enterprise could travel. Again, to the educated person, to produce a vaccine as quickly as it was being claimed it was going to be, could not be done without cutting corners from either or all of the process. And that belief makes sense. Otherwise, all vaccines would be discovered and produced as quickly.

In reality, research on Corona virus vaccines had begun quite some time even before Covid19. The base virus is all the same, it is just the variants and mutations that change. So, the vaccine process had actually begun well before the president even uttered the words “warp speed.” It would have served us all better, especially to establish trust, if he would have explained what I just did, that it allowed the rest of the process to move more quickly. But he did not.

Then there is all the mistrust. Not having accurate information from the experts, or rushed announcement (putting the carriage before the horse) has led to a lot of mistrust. Sure, certain media outlets have contributed, but so have so many individuals with their own agendas, surprisingly, some who have taken the vaccines but are just looking to disrupt the system. From the beginning, I have put all of my trust, only in the doctors who handle my care. They know my issues. They know how I think and process things. They know how to communicate what I need to know. If I refer to any other resources, those are either confirmations or refuting.

The difference between myself and others who have all this mistrust from health organizations and such, is that I do understand and accept, Covid19 was a new monster, with unknown potential for tragedy, what seemed to help one day, did not the next. That is what science is all about, finding what works. Mistakes will happen. But rushing information, giving false or misleading hopes, was not helpful.

There is no doubt, the vaccines are safe. While some want to claim the vaccines are experimental, just because they do not carry the label of “approved” by the FDA, that emergency use authorization is not good enough, and to be clear, the Pfizer vaccine is approved by the FDA, statistics are so overwhelming, more so than collecting normal data through clinical trials. Billions of vaccines have been given out with statistically miniscule issues, when normally trials of thousands of samples are normally the standard. The vaccines produced by Pfizer, Moderna, and Johnson and Johnson, are safe.

Are they effective? It does not take a medical degree or being a mathematician to see that the vaccines are doing what they are meant to, prevent extreme sickness and death. The vaccines were never about preventing infection or “carrying” the virus to someone else.” Current statistics prove overwhelmingly, that those who are unvaccinated are making up between 95-99% of cases of hospitalizations and deaths (depending on which state being reported).

There are a few other reasons that really have no credibility or standing, not to get vaccinated. One perhaps I might understand, but the others, are completely unacceptable.

First, are the freedom fighters, those who erroneously compare the vaccine process to the history of Nazism or communism, an act of tyranny, giving up your freedom. The bottom line is that people do not like to be told what to do and this is far from comparing it to Nazism and communism. This is just a ridiculous concept that has been brought up multiple times throughout history. But the end is still the same, vaccines work. Most have eradicated the worst diseases in our lifetimes such as small pox and polio. The Covid19 vaccines have that potential as well.

A certain population in our country does have a right to at least be suspicious of vaccine efforts, though, again, using the other required vaccines as an example, should be enough to convince those in the black community that the Covid19 vaccine is safe. I won’t get into the who history of it, but if you research the Tuskegee Syphilis Study, you will see why there is that understandable historical mistrust. But somehow, there should be a way to overcome this.

Then there is the argument, “going to let my body’s natural immunity handle it,” an argument claiming that healthy eating and living will prevent infection of Covid19 or worse. While not necessarily wrong, it is like pulling the handle of a slot machine. Are you going to come up with three sevens? Or are you going to bust. And how can you be so sure, you will be the one with the lucky pull? You don’t. I personally know some with this mentality, did get infected, some with minor effects, some requiring hospitalization, and at least one who did not survive. Again, how can you guarantee that your immunity will be the one to get your through this? You can’t.

Finally, all the misinformation that is being fed via social media and certain outlets (I won’t call them news because they are not reporting news at this point spewing this false information). I won’t list all the various examples being given, but just yesterday, an example of what is not only being spoken, but tolerated, I watched a news conference with Florida Pro Covid Governor Ron Desantis, and a speaker who made the claim that vaccines change “RNA”, all the while the governor just stood there squirming and fidgeting, knowing this claim (the speaker probably meant to say the DNA was changed, which is also wrong) was an outright lie. But instead of correcting the speaker when he was done, the governor simply shook his hand and moved on. This is the bullshit that is keeping us from ending this pandemic.

Another I touched on recently, a comedian now telling his fans not to trust anyone about the vaccines, including their own doctors, who he made claims are in collusion with the pharmaceutical industry and government. These kinds of claims are so harmful to ending Covid19. Just add this to the remaining conspiracy excuses.

There are legitimate reasons to not get the vaccine, referred to as exceptions. Usually, these are limited to health and religious, but I really need to call out the religious exceptions. Though I have not read it in a long time, I know nowhere in my bible does it read that “thou shalt not take vaccines” anywhere. And to those who say their “new” contemporary religion does exempt them, based on not putting “bad” things into the bodies, I would assume then, those people are non-smoking, non-drinking, non-drug-taking, no cake and sweet eating beliefs. If you are leading this kind of life, then I can respect that.

When it comes to health however, that is something more factual, than a belief. Allergies to a certain ingredient could be a concern. There have been concerns with doses depending on the time being given, causing “false” issues with bloodwork or medical testing (false meaning, resulting in outcomes not considered normal). And then, there are those, like me, who may be either immuno-compromised or immuno-suppressed. One would think, wait, these are two that should definitely get vaccinated. It is complicated why extra precautions must be taken, especially for the immuno-suppressed, compared to the immuno-compromised. And there is a difference between them.

Over the years, I have talked about being “asplenic,” not having a spleen. It was removed thirty-two years ago, as part of my testing for Hodgkin’s Lymphoma. This, along with having Hodgkin’s, has me listed as being “immuno-compromised.” Over time, as part of my survivorship care, I learned of my vulnerabilities long before Covid19 was a thought. Bloodwork would reveal, that I lacked immunity for two major illnesses that I thought I was once protected from. I was actually told that those vaccines would be lifetime. No big deal, just give me a booster of the vaccine and I would be good to go. But bloodwork would reveal, a single booster did not work. It would take multiple boosters to finally rev up my immune system to give me the level of protection necessary.

As for the Covid19 vaccine, there is a protocol that would become an additional issue, as well as my concern, given my past vaccination and immunity issues. With the Covid19 vaccine being so new, all that was known, was based on “normal” and healthy individuals, requiring two doses. In spite of being a new type of vaccine, mRNA as opposed to the past vaccines, I still had the concern, what if two doses would not be enough? I had fellow Hodgkin’s survivors admonishing me for taking the risk in delaying my vaccination for Covid19 for a “scheduled” third dose approval, but I could not help my intuition. But the reality was, with only two doses being authorized, what would I do if they did not work? What if science would determine a third “scheduled” dose would be necessary and if it were not close enough to the other two doses? Protocols did not allow anything more than just two doses.

With the help of the Leukemia Lymphoma Society, my concern was answered and confirmed. The LLS has been running their own study of blood cancer patients and survivors, to determine the efficacy of the vaccine as well as the need for a third shot or boosters. Following each dose, antibody testing is done. In my case, two weeks following my first dose, it has been confirmed, I have no antibodies, not only from exposure (have never had Covid yet, knock on wood), but none from the vaccine either. While expected, this is not good news for me. My hopes now are that the 2nd dose will be the equivalent of everyone’s first dose, and be my primer, which of course then leads me to needing the 3rd dose for protection. At least that is my hope. Also bad, this means my body will not attack Covid19 if I should contract it.

But you see, that is the difference in my hesitancy for the vaccine versus other reasoning. And hesitancy is not to be confused with being “anti”, those are two totally different concepts. “Anti” does not believe in the vaccines or that there is some sort of conspiracy attached to it. Hesitancy, is fear. And there is only one way to deal with that fear, and that is to talk to the professionals who know, your doctors. They are the ones you should trust to give you the right advice with the vaccine.

Too many people are still making the wrong decision not to get vaccinated. And it is causing so much pain and heartache as more people continue to die, just because they listened to lies and false agendas, conspiracies. Once committed, they are all in, no turning back. Sadly, even watching a loved one die from Covid, may not be enough to convince the rest of the family to get vaccinated, because the conspiracies have penetrated the deepest of their souls.

Covid19 is very real for me. I have lost more than a dozen people I personally knew to Covid19, whether they denied it, or were an innocent victim of an exposure. I have lost count how many have had Covid19, but am also learning how many others did have it, and have recklessly exposed others, including myself.

I am going to continue on soon with dose number two of the vaccine. And my fingers will be crossed that this will be the start of my protection. My hope is that if you are reading this, and have still been on the fence on getting vaccinated, hopefully my words may help and change your mind.

A Diagnosis With No Name For It

My friend and fellow Hodgkin’s Lymphoma survivor Danny shared this meme on his social media page. Today marked a monumental day for him as he marked his 30th year as a cancer survivor. Like me, and many others he joins a large group of others who have marked this milestone, On to the next milestone for him.

So what comes to your mind when you hear the words “long term cancer survivor?” The average person may think that it simply implies just as it is written, survived cancer a long time. Back in 1997, I was introduced to an email support list that was called “long term survivors.” I had been in remission less than ten years at the time, so personally, I felt I did not fit the description of having survived cancer that long. At the insistence of a member of that list, I enrolled anyway. Soon, I would learn an entire different meaning of “long term cancer survivor.”

Almost immediately, I realized something different about this email list than what I was not expecting. Sure, there were people who had survived decades, several decades in fact. But there was something else about the members in this group. They all had health issues, and these issues all seemed attributed to their treatments for their cancers.

Without getting too far into the weeds, I will use myself as an example. Thirty-two years ago, I was treated with a high dose of radiation (no longer used) and an ultra toxic chemotherapy (no longer used) to treat my Hodgkin’s Lymphoma. Back in 1989, while the immediate side effects were known, such as nausea, hair loss, and fatigue, little if anything was known as for in the future, potential side effects that may develop. Potential issues were a secondary cancer, or enlarged heart. Fast forward, this is my reality.

  • cardiac issues – double bypass, stent near the heart, stent in carotid artery
  • pulmonary issues – restrictive lung disease, “dead” lower left lobe, multiple unidentified spots on both lungs
  • endocrine issues – thyroid disorder, diabetic
  • gastrointestinal issues – risk of esophageal cancer, diverticulum, reflux, swallowing issues
  • spinal issues – osteopenia, facet joint arthritis in spine
  • muscular issues – radiation fibrosis, severe muscle loss in shoulders and neck

There is more, but you get the idea. On this email list, and on future social media pages, there were actually many “long term survivors” with similar or other issues. And it is true, we have survived cancer a long time. But when we talk among ourselves, we refer to ourselves as “long term survivors,” which of course, having a different meaning. While all of the issues that I mentioned above can have their own diagnosis, and clearly diagnosed, there is no name or diagnosis for the multitude of issues collectively as a group, all related to the late development from cancer treatments received long before.

So, as you can see, “long term cancer survivor” has two meanings, someone who has survived cancer a long time, and someone deals with all of these extra issues related to their treatments.

During the 1990’s, with the help of the internet and social media, patients/survivors, soon discovered that they not only shared similar cancer histories, but also similar complications of their health later on in life. So, fast forward to the long list I wrote. If you were lucky, you found a doctor who understood the correlation between the cancer history and the current health issues. But those doctors were few and far between. And worse, administratively, insurance companies had no idea how to code things that just did not make sense for the demographics of age. When it comes to applying for disability, one of the above mentioned ailments may not qualify by diagnosis, but all of them combined, having reduced quality of life and reduced functionality should qualify for disability, but there is no name for that.

We could call it “long term survivor syndrome,” but that takes what is considered an inspirational phrase, and gives it a negative connotation. Coming up for a group name for our issues collectively is only one issue, getting properly diagnosed, properly treated, and properly followed up is another. It sound easy, but it is not. Let’s take my double bypass. I was 42 years old, in fairly good condition, but had major chest tightness. On a whim, my family doctor out of curiosity ordered a test that would not have been ordered normally on someone my age and “healthy” appearance. It saved my life as I was diagnosed with a “widow maker” blockage of a main artery to my heart. That was discovered eighteen years after my last treatment attributed to cumulative and progressive radiation damage. Nobody had been looking for that to happen. I just happened to complain about a symptom. Soon after, all the other stuff was found.

I am one of the lucky ones. I found a doctor, who understood these issues, and combined with my personal physician, both work as a team to maintain my issues. Maintain, because these issues are progressive in nature, cannot be reversed, cannot be stopped, but can be maintained. While medicine is finally catching up with these late developing side effects and how to handle them, there is one more issue that still cannot be taken care of, at least to my knowledge.

There is a risk when it comes to operating on someone with my issues, due to the treatments similar to what I underwent, uncontrolled bleeding and difficulty healing. In fact, it has been my experience over the years, it has not been the procedures that have led to fellow survivors passing away, but rather, issues after correction has been attempted. This extreme risk, in spite of being faced with the necessity of life, usually leads to the denial of any procedure as extreme as a transplant of any kind. I have known several other survivors over the years who have needed either lung or heart transplants, only to be told, their bodies had gone through too much and would not be able to handle it, or the risks of the surgery considering our history were too great to permit success, even though their death would be imminent without the surgery.

In other words, medicine can fix everything with your heart individually, each time with its own risks, but to do a complete transplant, which would take care of all the radiation damage to the old heart, just won’t happen. Up to this point, I have known no one personally, who had been approved, or attempted any kind of major organ transplant, until this year.

The world of cancer survivorship issues had met their match with “Amy.” The condition of her heart was so bad, the only option for her, was a heart transplant. And of course she would be denied. And denied again. And again. Always for the same reason, too much of a risk. But anyone who was familiar with her, knew that in her personal life, she was a successful and determined woman. And at her young age (seven years younger than me), she was not about to give up. Just like many of my fellow survivors, having difficulty finding someone to help us with our issues, so did “Amy” have even greater difficulty finding just one surgeon, willing to do the surgery, that she was not only willing to risk, but was her only hope.

Years later, she finally got that approval, finding a doctor willing to do the transplant. The only thing left to do, was to wait for a donor. She got the call that her status had been moved to high priority, and was admitted to the hospital to wait. Sadly, a pre-surgical procedure led to complications for her, and though she got through those, time had run out with her heart.

Among my fellow survivors, who spent a lot of time getting to know her, we were often the recipients of her selfless support she offered to everyone, in spite of her struggling health, a loss now being felt of major proportions. Her picture is who she was, someone who was optimistic and supportive, through all times, never giving up hope. I know and understand the risks that she faced with transplant surgery, and how badly she wanted it. Selfishly, I wanted it as well, because she would have become the first person I knew to undergo a transplant, which would mean that medicine was continuing to evolve in the much needed care of long term cancer survivors, er…umm… or whatever you want to refer to us as.

All I Want To Do Is Laugh A Little, And Listen To Some Good Music

If there is one thing that I do truly miss since our world was overrun with Covid, is live music and entertainment. Of course, it was hoped, that after sixteen months, and the hopes of a vaccine, that our world would finally get back to some semblance of normal. Musicians and comics and other forms of entertainment were ready to go, rescheduling tour dates, working on safety protocols, all while caring for themselves, while they wait for the curtain to be pulled back up again.

Throughout the Summer, it looked like it was going to happen. The US had finally gotten its daily caseload down under 10,000 new cases a day, something not seen in over a year and a half. All the mitigation efforts and strategies were paying off, in spite of resistance from so many.

Then, people got careless.

REO Speedwagon (with lead singer Kevin Cronin tested positive), Bush, Stone Temple Pilots, Florida Georgia Line, Garth Brooks, Stevie Nicks, countless music festivals, and brace yourself, even BTS have made the decision to cancel their tours once again. And if you are like me, having hoped to catch “geezer rock” band Kiss one final time, the chances just got diminished after guitarist Paul Stanley tested positive, followed by the demon himself, Gene Simmons tested positive. Other bands are continuing on, likely just a matter of time until they face the same fate at the rate our country is accepting what Covid does and decides a certain minority finally decides that it needs to step up.

Comedians have also experienced the same situation, though their venues are much more intimate and compact, making things even riskier.

Recently, some have decided to become vocal about all the precautions that are being put in place as we continue to struggle getting through Covid19. It is understandable, entertainers are losing tons of money, because that is what they do. And while I have always made it clear, that I am 100% for the freedom of speech, I must admit, I am disappointed in the approach some have taken. Musicians and comedians have never lacked the ability to communicate their politics and opinions. And I can take them or leave them. Like most, I don’t go to a concert to hear politics. I am there to hear the entire new album played live. If I expect a speech coming, perhaps I will make the decision, not worth the paycheck I spend on tickets.

But something unfortunate is happening right now, and it should not be that difficult. It is for the better of mankind and of human health necessity. Venues are placing “requirements” for events to take place. It makes sense. When we found out that second hand smoke caused cancer in non-smokers, the non-smokers were protected, while still allowing the smokers to enjoy their cancer sticks, just not indoors where non-smokers would be trapped. Both smokers and non-smokers were able to enjoy meals wherever they wanted, even in the same establishment, just not have smokers blowing smoke, causing harm to others.

The same argument applies to Covid19 mitigation efforts. It is a false claim that “freedom” is being taken away because you are asked to wear a mask somewhere, have a negative test, and/or have received a vaccine. Depending on the venue’s requirements, everyone is still able to attend and enjoy. There is no freedom lost. You have the freedom not to partake if you do not wish to follow the recommendations, or in some places, now mandates. But what you do not have the right to do, is infect anyone. And since some who are positive for Covid may be asymptomatic, that means not showing symptoms, those positives are carriers spreading the virus, infecting others who may not be as fortunate. This is no different than the second hand smoke argument. Exposing others to Covid19 through intention or ignorance is just as dangerous and deadly.

What I do not understand, is that the United States, and every state within it, has the legal tool it needs to not only shut Covid19 down, but to deal with anyone who intentionally causes harm by knowingly infecting someone else with a deadly disease. I am going to post the link so you can see just how simple it would be, to include Covid19 on the same level as how HIV was dealt with. Yes, it is illegal in most states to knowingly infect someone with AIDS. It should be no different if you recklessly expose someone to Covid19. The criminal aspects are left up to the states, while other regulations are left up to the federal government.

And before I move on, before people start posting stuff how the government cannot mandate vaccines, yes, it can. And the Supreme Court has upheld that mandate in the past. Again, keeping it simple, the year is 1905, the case is Jacobsen vs Massachusetts, about the small pox vaccine. The Supreme Court ruled for the safety and health of the population. Small pox killed hundreds of millions of people from the year 1900 until vaccines put the status as “eradicated” in 1977 (in other words, no longer). Who knows how long small pox was actually around, but a vaccine became available at the turn of the 19th century (that’s the 1800’s). In the case of Jacobsen, the smallpox vaccine was mandated in 1901. In spite of his opposition, the Supreme Court ruled it was in the nation’s populations health and safety, to rule against Jacobsen.

The same will happen with Covid19. While smallpox killed hundreds of millions world wide, that is over hundreds of years. In Jacobsen’s case, around 300 people died from the outbreak in Boston in 1901 (compare that to the dead from Covid19 in 2020/2021, there is no comparison). World wide, in less than two years, there have been nearly 300,000,000 million cases, 42 million in the US alone. 4.5 million are dead around the world, 677,000 dead in the US (not including Florida since they do not report their information accurately.

Yes, the case can be, and will be made for mandating the Covid19 vaccines, which are safe.

But what set me off this morning, was a comedian. There are some comedians who have been protesting mitigation efforts, and I get it, because for them it has never been about their act. It has always been about their political platform, and that is their right and their ability. Honestly, they are not that funny anyway. But the comic I heard this morning, threw me for a loop, because, while I do think he is funny, and I do get annoyed with him injecting his personal politics into his act (I have no objection to hammering both political parties), he crossed a line.

Beyond “Goatboy,” he really is a funny comic. He has also made it clear, that he does not take Covid19 seriously enough to be concerned for others. And while many conspiracy kooks and anti-vaxxers are just way off the charts, what he said this morning was horrifying. On a Facebook live post he claimed “God is good”, he was going to fight segregation (a conspiracy term used the anti-vaxx movement), and then explained his defense. I want to be clear, I get the whole “distrust of government,” and as far as Covid19 is concerned, that started with the former president, the way the health agencies had to tapdance around his ego, and the current administration and how they are trying to deal with the long term opposition of common sense. I get that. Trust is a hard thing to restore when you blow it.

But Bruer went too far, encouraging his viewers on the post, to even stop believing their doctors. I could not believe my ears. Of all the things I heard, this was the most fucked up! Bruer’s claims is that our doctors are all in together with the government and this “scam.” Bruer then goes on to say, he would “rather go bankrupt” than to give in, in other words, to hell with any of his fans and any concerns of health.

Admittedly, I do not know if Bruer has had any personal experience with Covid19, or knows anyone who had been so sick or even died from Covid19. If he did, then he is a complete sellout just for his schtick. And if he has not, then he ought to just shut the fuck up and consider himself lucky, because people have died from Covid19, and are continuing to die at a ridiculous rate, when we have the means to prevent it, but assholes like Bruer doing all they can to oppose it for their own financial gain.

And that is just baaaaaaaaaad for all of us.

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