Paul's Heart

If At First…

It is hard to know if expressions that we were once told as children still live on. But one that has always stuck with me, and I definitely used with my daughters, “if at first you don’t succeed, try, try again.” It applies to many things that have been dealt with in our personal lives, as well as in the world in general. Perhaps none so important as the fight to end the Covid19 crisis.

If there is one thing that is most frustrating for me, is that there seems to be no patience, there has been none from the start, in dealing with a near completely unknown virus, one that will clearly go down in history as one of the most lethal, when you go by actual lives lost instead of the falsely encouraging low percentage rate. It was obvious, we had no way of knowing much of anything about the disease, how to protect or prevent the spread, and no plan.

What we did have, was a lot of politically misguided input, which in all my years of dealing with medical issues, I have never had one issue of conflicting politics interfere with my care. But here it was. If you dared to attack the leadership, many would blame the scientists for sabotaging the leadership. Now, I cannot speak for everyone, but I know of all the scientists that I know, not one has ever worked towards anything other than a solution to a problem. The end result is a huge score, their name attached. One such critical example, Jonas Salk, you may not know his name, but you can thank him that we do not see Polio anymore.

But just as the vaccine for polio, dealing with Covid19, from diagnostics, to preventions, to treatments, to vaccines, the process is the same, trial and error, try, try again. Though it can happen, it is highly unlikely that an answer to any complex problem can be discovered right on the first go. Because of the politics of Covid19 however, scientists were immediately discredited for the very process that we have relied on for centuries for our survival. It gave those whose political stance was stronger than concern for the well-being of fellow human beings, the opportunity to say, “see, you are wrong. You don’t know what you are doing and until you do, I am not going to do what you say because you are just trying to control me.”

As for me, I cannot afford politics with my health. I have been a benefactor of science so many times, several of those critical. I am thankful for processes, protocols, and regulations to make sure that things are as safe as can be. Notice, I did not say, “to make sure things are perfect.” I do not believe that we can have 100% success in most things. Yes, it is nice if we can achieve that, but that cannot be the goal, especially when we are dealing with the Covid19 crisis.

Almost a year and half later, we are at an encouraging position, we are dealing with several vaccines which show promise, with a success rate better than any other vaccines created. To be clear, I am not an anti-vaxxer, but I do believe in processes. As I have mentioned previously, I support the vaccines that have been given emergency use authorizations. And I do that, because I understand what that phrase means. It means that research has been done, and it current results show that it will be successful, and the crisis is bad enough, that the risk of not using the vaccine, is less than letting the virus burn through the population. Dealing with multiple late effects from my cancer treatments, I have these considerations on multiple occasions.

I will get the vaccine, eventually. I do not doubt its success, that is not the issue. The fact that it has not been “approved” is not an issue either. To get the approval, all that means is that all of the other studies must be completed, as well as the other processes. No, my unique health issues, had not been researched when it came to the emergency use authorization. So there was no studies, no data, no idea, how my body would react to the vaccine, me having no spleen, and multiple other complications. Would the vaccine draw down my immunity further making me susceptible to other illnesses? Would the vaccine have any impact on any of my health issues pertaining to my heart or lungs? So far, research had only been done on healthy people. Science.

Then there is this, and this is something I do know about the science of me. The importance of vaccines is to get the body to make antibodies. I learned several years ago, following my first heart surgery, my body does not make antibodies, or at least without boosters. This is a fact. There are two vaccines that I have had to have multiple boosters to produce antibodies. I know how my body works. So here is the problem.

There are no studies on boosters (yet), especially if they would be safe. There is no protocol. All I can relate is anectdotal from stories I have heard from other survivors of Hodgkin’s Lymphoma like me. Several have had Covid19. Many have gotten the vaccine. Some have had both. There are those still dealing with lasting effects from Covid19. I know of some who had severe reactions to the vaccine, and some who had none. What to do? What to do?

Fortunately, science is doing what it needs to do, through trial and error, Big Pharm is at the stage now that they are looking at boosters, and feel that boosters will be helpful in dealing especially with the variants. But again, the is not based on people with health like mine. But science will get there. It just takes time. It is not perfect. “If at first, you don’t succeed, try, try again.”

I do have one encouraging hope, in that because I had what is considered a blood cancer, while I wait for the scientists to catch up, the Leukemia and Lymphoma Society has not waited, and is running their own studies on survivors of blood cancers such as Hodgkin’s. Fellow survivors are reporting their data to the LLS about their exposure to the virus, the vaccines, whether their bodies have produced antibodies, all of the information necessary to form an opinion on what to do with patients like me.

It is a hard balance, personally speaking. I hear my doctors tell me, “Paul, get the vaccine, if anything at least it has the potential to make the effects less severe.” And they are likely right. Unfortunately 31 years ago, I had been given an option as well, based on limited knowledge, other than “it would work.” Do not get me wrong, I am grateful for my 31 years of survivorship, and I likely still would have opted for the treatments that saved my life in spite of the potential for side effects. But my life would have been a bit more easy, had the research been done, as to what the side effects and risks of my treatments would have been, more importantly, how to handle them if and when they would appear.

And that is my only hesitancy at this point. I will get a vaccine, not sure which one yet, but I will get it. But I am following, and trusting the science. Honestly, in my lifetime, I have never seen a process or crisis, like this, and I never want to again. But I do believe we are doing the best we can.

Playing Semantics – Sometimes It Matters

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Do you remember, when as I child your parent would scold you, “did I say you could do that?”, and perhaps you might have responded with “you didn’t say that I couldn’t.” Semantics. We knew the right answer, and it was not our response.

The definition of semantics is a bit complex, because it all depends on what type of semantics that you are talking about. There are formal, lexical, and conceptual. Simply put, formal semantics is basically a reference or implication.

Two more definitions, “optional” and “recommended.” I am not going any more in depth than Google because we all know what these words mean. Optional, of course refers to being able to choose, or not. Recommended means advised or suggested. Now, you can have the “option” whether or not to follow a recommendation, but something being “optional” versus “recommended” are not the same at all, even though the “implication” is being pushed on a recipient.

What the Hell am I talking about? Well, obviously, with the mask on the cover of this post, we had something occur last week where I live. Our local representatives had chosen to let a “mask” mandate expire without renewal, a move cheered by many, still scoffed at as “never should have happened by others.” But to the rest of the public, this decision will have an impact.

We are all still in the middle of this pandemic. Yes, there are still plenty of naysayers out there still even claiming this is not real. And the truth is, our daily numbers are just as high as last year when the mandate was put in place. Of course, this opens a door for those against to masks to cry out, “see! The mask mandate did not help!” Wrong. With not enough people wearing the mask, it was not expected that 100% of the people would wear masks, but more needed to wear them, the concept was simple. It is as much the difference of trying to put out a brush fire with a garden hose versus an actual fire hose. There is no chance.

Yet, here we are. We are more than double the daily cases we had last year at this time, when the mask mandate was put in place. We are approaching a staggering 33 million cases in the US alone, and will easily break 600,000 dead fairly soon. Yet the one thing we can do, to at least help, is wear a mask.

Yes, I get it. It has been over a year we have been asked to sacrifice, and many have done that. But, over 587,000 have paid the ultimate sacrifice.

The only thing quicker than a trip to the bathroom after eating at Taco Bell, was the actions of our local community once the mask mandate expired. Social distancing stickers on the floor, gone. Signage reminding of mitigation efforts, gone. Masks, at least a 75% reduction in usage. Remember, we are double in cases where we were last year at this time, and we are just under where the numbers would be during the summer, before the huge spike kicked in. We are far from this being over, in spite of vaccines being administered. Vaccines are only part of the plan. There are still too many in denial, too many fighting common sense. And only time will tell. But if yesterday is any indication of how ignorant and selfish the population has become to Covid19, it is going to be bad.

I need to offer a couple of qualifications before anyone tries to argue with me. I get my information from the doctors that handle my care, not the media, not from friends. I do not live in fear, afraid to live my life. To the contrary, I have lived through so many virus outbreaks, and because we knew how to handle them, I was able to live “with” the conditions. And that has been the difference with Covid19. We had no idea what we were dealing with in the beginning. Now we do, to a degree. Mistakes may still happen as experts try to adjust from the constantly changing developments. But for the last eight months, I have made the adjustments to carry on in the most important areas of my life that matter most to me, including seeing my children. No, I am not living in fear. I am following guidelines that are recommended because they make sense, and they work.

So, as I mentioned, yesterday, I went into a restaurant to pick up some takeout as I had done previously, before the mandate had expired. Before last Tuesday, it was not uncommon, in spite of the local mandate, that there were some people who “opted” or chose not to wear a mask. Honestly, the mask was a toothless tiger, in that enforcing the requirement was pretty much non-existent with a major business flaunting his rebellion against the mandate, scoffing at any measure of safety against Covid19. For me, I know you will not get 100% of the people on the same page, but at least I felt comfortable enough, to support my local businesses either getting curbside pickup or take-out.

Then Tuesday hit. No more local mask mandate. I walked into one of my favorite places to pick up my dinner for the night. And as I often do, as I entered, I scan the room, so that I know where inside I need to try to avoid. It was not overly crowded inside. But I saw no one wearing a mask, not one person. Okay, understandable, they were all eating. Then I saw the staff. Not one staff member was wearing a mask either.

I was beginning to feel uncomfortable, that I actually thought about turning around and thinking of a plan B for dinner. But I had confidence knowing that I had eaten food from here before, and it was fine. But it was a reaction that I got, that I had not experienced in over thirty years. I was being glared at by a waiter because I was wearing a mask. “Oh, great, you are one of those,” I imagined the waiter thinking. Their eyebrows were dropped, so I definitely had a feeling from them of disgust.

This business had been one who had been honoring the mandate previously, and likely reluctantly. Now, throwing away any concern for clients, they saw the face mask as something that would have a negative impact on their business. They want clients who are ready to forget nearly six hundred thousand dead Americans. Covid19 never happened. Stop reminding them it did.

Having gotten food from the restaurant several times before, because I felt with my vulnerabilities, I could do so without the likelihood of contracting Covid19, that is no longer the case. While I am sure the manager would take exception to my claim, his employees are underneath him, and they are a reflection of the business.

As I have always stated, I am one of the vulnerable. I have also delayed getting the vaccine, because I believe in research, and more needs to be done before I get the vaccine. I now know of one other fellow survivor like myself, who got the vaccine, and a couple weeks later, tested positive for Covid19. The decision I make wearing a mask, or coming into a business imposes on no one. I still have my freedom, a frequent false war cry of anyone asked to help do the right thing, to care for others. And we have learned so much more from a year ago of how to deal with Covid19. There is clearly a lot more to learn. But as we advance, certain recommendations are being made, others are being relaxed. Clearly, had there been a plan last January or February, we would not be in this situation that we are today.

A headline reads today, President Biden to announce easing of outdoor mask wearing recommendations. You see? Mask recommendations were not a mistake, they were using recommendations to mitigate, and control the spread. Some of us helped, some of us hindered, and at times, quite rudely.

Just as I had to through SARS, bird flu, swine flu, and everything else, I learned to live with the risks, only after the recommendations were made. And that was my option, my choice. There is a difference. That is not living in fear. That is not a loss of freedom. That is concern for myself and those around me.