Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Side Effects”

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.

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.

Decision By Bagel


Could a baked good have the power and influence, in making a critical life and death decision? To be fair, the particular bagel I am making reference to, is a great bagel. It cannot be found in a Starbucks or in the frozen section of the grocery store. It is baked fresh every day. It is definitely a great bagel. And after this morning, I am one step closer to making one of the more important decisions of my life, whether to get the Covid19 vaccine or not.

What? What does a bagel have to do with the vaccine? Why not just flip a coin if I am that uncertain? I assure you, the decision is not as easy as a flip. First things first.

I am not an anti-vaxxer. And while my initial support of the vaccine process was suspect at best, because of the processes in time that were not followed, it is clear, the vaccines that have been approved or approved for emergency use authorization (EUA), do have an impact on getting of top of, and staying on top of the Covid19 crisis. Also, understanding that the vaccine is not about preventing infection from the virus, the vaccine is about preventing the extreme effects of the virus, those that result in a higher likelihood of hospitalization or death. This is the thought process of someone not treating this pandemic as political or conspiratorial. This is dealing with facts.

I am immunocompromised. My spleen was removed in 1989 as part of the staging for Hodgkin’s Lymphoma. I learned early on, way before Covid19, I was more susceptible to viruses and other illnesses. I check off most of the other boxes to the susceptibility of the Covid19 virus. I have cardiac and pulmonary issues related to my treatments for my cancer over 30 years ago. I am also diabetic, and overweight (though not obese).

So, when the warnings came out from the scientists, because of my exposure and medical knowledge, I knew I had to take the warnings and precautions seriously. I could not afford to be affected by the smoke and mirror of politics and false choices being hurled through the television and social media.

Lastly, the warnings from my doctors were clear. “Do not get Covid19.” One went as far as to say, “with your issues, it will kill you.” So to be clear, I have taking this crisis seriously from day one. I made decisions that were difficult, such as making arrangements whether to have my children visit, health care, and such, even participating in court proceedings in reference to the Covid19 crisis, all with the mitigation recommendations and warnings in mind.

But you know what I did not do? I did not make it political. I did not make it about vanity. I did not make it a false argument over loss of freedom and liberty. For me, the science was clear. The exploding statistics did not lie. And I did it without being “ordered to do it,” which made it a lot easier. More importantly, the decisions that I made, impacted only me, and my loved ones. Check that, it also impacted others that I might come in contact with, because the care I was taking for myself, was also going to benefit others.

A meme came across my news feed recently. I am not posting it here, because it really is stupid, inflammatory, and completely erroneous in its bravado. But the commentary reads, “444 days without a mask, never tested, with no vaccine, no social distancing and no fear… we are still alive and all our people are still alive too.” And then refers to everyone who did follow the mitigations as “suckers.” The person who posted this, I know personally, and yes, while I know and disagree with their position, the meme definitely does not apply to him. I know for a fact that several in his circle were diagnosed with Covid19, including one death. I do not know if he himself or his family have had it, nor do I think he would ever publicly admit it if he did. But for him to post that meme, is pure bullshit.

Off my soapbox. The vaccine. I believe the vaccine does what it has been studied to do. We are still waiting for other studies to be completed, but for the purposes of saving lives, it appears Pfizer, Moderna, and Johnson and Johnson have products that will do just that. Statistics of success are adding up exponentially. And yes, while the concerns over long term side effects, something I personally deal with from my cancer treatments, it will not matter if you get Covid19 and die just because you did not get the vaccine.

For me, my reluctance at this point has been simple, and based on a condition with my body that I was made aware of a decade ago. When it was discovered that my body was dealing with issues related to my cancer treatments over thirty years ago, one of the studies done, was on titers, in other words, the ability of my body to fight illnesses, especially through vaccines. Three of the illnesses tested were influenza, pneumonia, and menningitis. To be clear, there are three illnesses, but within those illnesses, there are multiple types and strains. So, in determining titers, in other words, how strong your antibody response is, the tests are divided by types and such. In my initial case, I showed no ability to fight most of the types and strains of all three. That was kind of expected. But this was not what was expected. When I was given the vaccines following that determination, and then followed up with titer testing, I still was not registering much response with antibodies for the flu, pneumonia, or menningitis. This was not good. Boosters, additional doses of the vaccines were given and followed up with titer testing. I finally had a response to the flu, and a minimal response for menningitis, and nothing yet for pneumonia. Finally, a third booster would give me the response necessary for menningitis, and finally, only minimally at least, a response for pneumonia. One more booster for pneumonia that year, and I finally achieved immunity with most types of pneumonia (ironically, I did end up with pneumonia later that year, but not caused by a virus, rather, aspirating reflux, a different post is needed to explain that one).

But now you can see my dilemma. I know how my body reacts, or rather, does not react to vaccines. And there are many other fellow long term survivors in similar shoes as me. And up til this point, I have delayed getting the vaccine, on the simple fact, there have been no studies on boosters, which I am 99% certain I will need, no protocol on how/when to administer them and will they be safe.

One odd thing I do not give much weight to, is the fact, that if I would proceed with the vaccine, I would not allow it to give me the false sense of security that it worked. In other words, I would still follow all the mitigation precautions. The vaccine in just the two doses will not give me the ability to do as so many others are able to do now, walk around confidently that they will not get sick enough from Covid19 to end up hospitalized or dead. Keep in mind, with the vaccine, you can still contract Covid19 as many are finding out. The vaccine simply prevents the extreme situations of hospitalizations and deaths. I now know several people, who have had Covid19, had antibodies, got vaccinated, and then tested positive again. But the vaccine has done its job, preventing the extreme effects.

So, what does this have to do with a bagel? For several months now, I have been easing back into exposure, still following mitigation recommendations, masks and distancing. And one of the things I have been doing, is going to the bagel shop on Saturdays. And I have been noticing as time goes on, people and their behaviors as they have changed over the months, as our country gets a grip on Covid19. Plastic barriers between workers and customers are now gone, and so is mask wearing, probably close to 95%. In fairness, I live in Florida, where there has been much controversy over the willingness to cooperate with mitigation and collections of actual statistics, and massive amounts of denial of reality.

So while nationally, Covid19 numbers had gone down, they are starting to creep back up. We have seen this pattern before at least twice, and definitely through other countries. And living in a state that probably 65% of the residents deny or refuse to accept precautions, and a highly more contagious and lethal strain of Covid19 increasing cases nationally, this is a concern. It is not a concern for those who have been vaccinated as it has been determined the vaccine does protect against the variants just as it does the original strain.

But while we live in an “honor system,” people not wearing masks assumed to be vaccinated (you know what happens when you “assume”, you make an “ass out of u and me), and worse, those who still deny or treat the situation as political. And as I cannot tell at least by just looking at someone if I am safe around them, I have two choices I can make. I am already doing so, and plan on continuing to do so, follow the recommendations. I do not care about the stares and glares I get. Not one of those looking at me gives two shits about me living or dying. I have to do what I have to do, and the decisions I make, affect no one. Even better, for the ones who claim they lose their freedoms and liberties, I call bullshit on that too. Because with the exception of going to a movie, and long distance travel, I am doing everything I was doing before Covid19. I am still free. I still have my liberties.

The other choice, I am one step closer to making, and yes, it was because of this morning’s bagel. Years ago, when I first met with my doctor and we talked about my “luck” with not getting the vaccines, he compared my streak with that of someone in a casino. At the time, I was 18 years out from my cancer, so that meant 18 years I had not gotten a flu vaccine. That is when I got this speech. “So, you are familiar with a casino. And it does not matter if you are playing slots or cards or whatever. Let’s say you win 18 straight. Do you really know for sure that your luck is going to continue, especially letting it ride? How many more hands do you think you can get before you bust?”

Well, I am at that stage again. All of the facts are there in front of me. The vaccine works. In Florida, there are two types of people and they react differently to the facts. And then the state itself is not exactly transparent with its facts and statistics. There is an expression when it comes to Casinos, the games favor the house. The odds are not in the favor of the player. I know that, which is one reason I can be in a casino, and not have one itch to play. But with as much as I have on the line, finally getting to a stage in my life, I never thought I would get the chance to see, my daughters grow up, this decision continues to grow in importance.

I will get the vaccine, it is just a matter of when the time is best for me to do so. All I am asking for is one more detail, a booster protocol. In the meantime, I am doing what I have done with every other virus outbreak, learning to function with it. And if that means wearing a mask longer, social distancing, and washing my hands (seriously? We needed to be told to do this? Are people not going to do this anymore now that people are not following protocols? Ew!), I can do just that. And while it has no functional impact on you, it is to your benefit as well as my own that I do continue these protocols.

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