Paul's Heart

Life As A Dad, And A Survivor

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.

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