The following is a writing project that I had completed, based on a question asked of me. It was submitted for print, however, since I have heard nothing back on that submission, I am printing the story here.
A question was recently posed to me by a newly diagnosed patient. Is the treatment for cancer really better than just letting cancer run its course? In other words, is going through the process of the cure, worse than the cancer? Of course there are risks that come from the treatments, but it is often the short term side effects that raises the question.
Being a thirty-one year survivor of Hodgkin’s Lymphoma, I have not forgotten what it was like to undergo chemotherapy and radiation therapy, having undergone both. I remember all too well, the nausea, the fatigue, the hair loss, and the loss of control of my life. The treatments have changed over time, but unfortunately, the unpleasant side effects, physical and mental, are still faced by patients, challenging their will to reach remission.
Surviving my diagnosis was the only option that I gave myself. I was twenty-two years old and I had so much in life that I wanted to experience. There were things that I had planned and hoped for, such as building a family. I was too young to choose the option of giving up, before treatments had even begun.
Originally I thought perhaps just putting my thoughts in writing would help me with all of the thoughts that had raced through my mind, just as a source of venting and reflecting. Little did I know it would lead me to hosting a blog, publishing several articles about survivorship issues, and a once in a lifetime opportunity of having one of my writings published and performed by Broadway cast members for a wonderful program called Visible Ink.
Learning what really matters in life, the things I can control, and the things that I cannot has been the key to my survival.
Using my survivorship, I have striven to inspire others to get through their toughest moments, especially from one treatment to the next. Back when I was first diagnosed, I knew of no one else personally who had faced cancer. By the time my treatments had ended, four people close to me would face their own diagnosis. They would tell me, that my battle with Hodgkin’s would be their inspiration as they fought their own battle, as they knew no one else who had gone through cancer, other than me.
Taking time, I spend time with those close to me, taking trips, travelling, and experiencing activities and cultures literally all over the country and the world.
Every day since hearing the words “you are in remission,” I value the simple things, clouds, watching cows in a field, and especially hearing my children laugh.
Living long enough to see both of my daughters graduate from high school, college, get married, have children, some day to be called “grandpop,” are goals that were set many years ago. And those goals are very close to being reached. And this is just after thirty-one years so far, with hopefully many more to go…
From November of 1988 to March of 1990, I battled Hodgkin’s Lymphoma. For the most part, I did it alone. I felt isolated, ostrasized, and forgotten. I did without being up to participating in family functions or social events. There was no time or purpose to not focus on anything else other than beating my cancer. I am not bragging about how I got through it, nor am I looking for a medal or a chest to pin it on.
But now, after the same amount of time, I have done what I had to, to get through the Covid19 pandemic. I knew I could respect the mitigation efforts and abide by the recommendations. Again, because of my vulnerabilities, I needed to follow the efforts necessary. Just as I did with my battle with Hodgkin’s, I have been getting through Covid19 without one bitch about it.
We are now at a major crossroad. Having finally gotten a grasp on the pandemic, we are on the cusp of undoing everything that was accomplished. We have a vaccine that while it does not prevent contracting Covid19 or the ability to spread it, it does dramatically reduce the severity of the illness, and also dramatically reduces the number of deaths from Covid19. This is in spite of those who are blanketly “anti-vax”, politically inspired not to get the vaccine, legitimately concerned about the safety of the vaccine, and even those who still believe the virus is a hoax. There are still so many, and after over 600,000 dead Americans, I just do not get how you can deny it anymore.
As viruses do, Covid19 has mutated, to a much more contagious and dangerous strain. The good news is that the vaccine that was discovered seems able to protect people with almost the same level of protection. The results were obvious under the use of Emergency Authorization, we getting under 15,000 new cases per day, but even that was still too high. But considering that we were over 125,000 at one point over 200,000 new cases per day, this is not good news. This is also during a time when our country is “opening up.” We hit those high case numbers as were trying to mitigate, because we could not get enough people to care, and follow the recommendations. With the vaccinations, the numbers have finally decreased.
But this latest variant, is more contagious, and more powerful. And for those who are unvaccinated, all eyes are on us. I was included in that. I remained unvaccinated as I waited for science to catch up with just one simple study, that of immunocompromised patients. I know for a fact, that my body does not respond to vaccines without boosters. Pending the application from Pfizer, there was no protocol for a booster for Covid19. There are plenty of other fellow survivors in a similar situation as I am, they too have opted to wait. Others, have taken their chances and gotten both doses. Some of those have developed anti-bodies, some have no idea. I have made the conscious decision, not to live with the false sense of security. Plus, without the plan of a booster, two doses wasted on me could make a booster ineffective if too much time in between.
Here is the deal. There are more results from the vaccine than normal testing with the amount of people having received it, than would normally be studied. The fact is, the vaccine is safe. And while the beaurocratic process is the only thing that stood in the way of full approval (dealing with licensure), a full approval would at least chip away at one part of the population who has not been vaccinated. But the other notable fact, is that scientists have said, at the time, for the fully vaccinated, boosters were not necessary. Again, that did not address situations like mine.
So, with the exception of the first few months where I pretty much avoided everything public, I have learned to “live” among the Covid19 world. I have my ways of dealing with crowds, and unfortunately, those who feel the need to judge my concerns for my well-being. As an unfortunate meme came across my wall, bragging that they had gone 444 days without following mitigations, and still do not get Covid19, they failed to address the meme with, “but did they know anyone else who was not as lucky?” Chances are pretty good, not likely.
As for me, with the approval of the 3rd dose for the immuno-compromised, I did in fact begin the process. No surprise, it has been confirmed the vaccine did not work at all. I have no antibodies from either the vaccine, nor exposure. Again, I expected this. I am hoping that when I get the second dose, there will be at least a little bump from antibodies, because if not, then a 3rd dose will not necessarily guarantee anything for me. The bottom line, I will still have to take the precautions I have this entire time. Some call it “living in fear”. I call it living smart.
Here we are, the country pretty much back to normal operations, pre-pandemic. Most mitigations no longer in place except where federally allowed or privately owned, yet, still we have too many insisting for their own selfishness, that the mitigations should no longer be in place, some losing their minds to the level of public confrontations. A good portion of the US population has been vaccinated, so we are nowhere near where we need to be for “herd immunity.”
A clear line has been discovered though with the vaccine, and it is a political line, politics over science. With so many refusing to get vaccinated over politics or anti-vaxx stance, it is not hard to see the increasing of cases of the new variant in the US. One glaring fact has been discovered. Over recent weeks, all deaths attributed to Covid19, were all unvaccinated victims. Hospitals again are seeing Covid19 populations explode, but again, in certain areas. One only has to look at the political makeup of a state, and you can guess, and then confirm, where the increase in cases is coming from. Florida, where I reside, is one of those states.
There was a comment made on my last post, which will not get published, as it contains clear false information, but needless to say, the writer disagreed with me, and by me, I mean the facts of agreeing with science and the processes involved.
As I said, we are at a crossroad at this point, and it is clear that the two roads are vaccinated and unvaccinated. And at this point of the pandemic, I am pretty sure we are seeing Charles Darwin’s theory of natural evolution play out. Those who have been vaccinated, will survive, even in the event of Covid19 breakthrough cases and likely variants, simply because we are trusting the process of science. And those who will choose to remain unvaccinated, will either survive natural exposure, or they will not. But the reasons behind the “will not” is what will prove Darwin correct.
I have lost countless acquaintances and friends to Covid19, and so many more having survived their infection. The number of people I am aware of that have not had Covid19 is shrinking, but still includes me. Tragically, I have lost a family member to Covid19. I am frustrated by the continued attempts of some to lessen the severity of this virus, comparing it to others and such, and for that reason, I am not repeating those kook conspiracies, because I believe that the more they get repeated, the more life keeps getting breathed into them.
Like I said, we will get to the end of this pandemic. It is a question now at this point, what will be the total of the unvaccinated who will die because of false beliefs and stances they chose to take, and lost. They are not patriots. They are not following “God’s will.” If you die from Covid19, and the reason you did so was because you chose not to get vaccinated (and I made sure to use the word chose out of respect for those who are unable to get vaccinated due to medical conditions), you are fools.
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.
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