It is a double-edged sword, a Pandora’s box, to be aware of your health, that you face vulnerabilities in life.
As a cancer patient, when we hear the word remission, it is instinctual to expect to move on, return back to our life pre-cancer. It comes as a shock when years later, some of us discover, that the treatments that were used to save our lives of cancer, only cause other issues, some serious, later in life, a trade-off of one bad thing for another.
When we become aware of these late developing issues, we have two options: ignore them, or face them and manage them. In either case, we still have our life to lead. To those around us, from close family, to friends and co-workers, the answer is simple, “just get over it.” To the patient themselves, not so simple. When we were diagnosed with our cancer, if we just tried to ignore it, and move on with our lives, we would surely die. For many of the late side effects some of us develop, it is that same situation.
In my case, my first awareness of my late effect issues was discovered in April of 2008. A simple phone call to my family physician, in less than a week led to a test unusual for a then-42 year old, but open heart surgery to prevent a fatal heart attack that was imminent. The surgery was a success, and I would recover. Again, for those around me, that should have been the end of it, time to move on.
Upon discovering the cause of this cardiac condition, and in the rush to correct it, other things were missed that were discovered with subsequent testing. In other words, there was no “just getting over it.” In just the immediate discovery following my bypass surgery, it was discovered that two of my valves have also suffered progressive damage from my cancer treatment as well. As anyone with valve issues of the heart will tell you, it is not easy to go day to day, waiting for the time to come, to correct those valves. And in my case, my list of these types of issues goes on.
But has my life stopped? Absolutely not. Do I have my limitations? Sure. My arms no longer have the mobility or flexibility to throw a softball. I do not have the endurance to ride a bike. And due to the fact that I have no spleen, removed during my cancer days, I have to avoid people when they are sick, my immune system being compromised.
Yes, that is John Travolta in one of his earlier movies, “The Boy In The Plastic Bubble.” It is the story of a young man with a challenged immune system, and the only way that he could “enjoy” life. It is crudely told, but simpler put, the only way to protect him, especially from others, was to keep him sealed in his own environment, and sacrifice anything and everything.
Asplenics (those without spleens) like me and those who have other immune challenges on average do not face this extreme of a precaution, though we do still rely on others around us to do the right thing.
I recall years ago, challenging my employer when a co-worker came into work with strep throat. The average person can contract this bacterial infection, may even know that it is contagious. But unaware of anyone else around them, with a compromised immune system, could spread the illness, perhaps even causing death. I told my boss I was going home if the contagious person remained. I had nothing against this co-worker, in fact, he and I were friends. But I was not going to be put in a position where I could die because of his selfishness. And surprisingly, my employer did not seem concerned about strep throat being spread amongst the rest of the company, as the employee remained at work. It was left up to me if I wanted to do without the day’s pay. And I did just that.
To take care of ourselves daily, to prevent common issues like the cold, the flu, and other such ailments, we are always told to do the most simple of things, cover our mouths and noses if we cough or sneeze, and wash our hands. These are pretty basic and if taught at an early age, becomes instinctual. Unfortunately, we can all attest that not everyone appreciates or participates in this courtesy of hygiene.
Every year, we are put on alert about some new outbreak of some sort. And those of us who care, are considerate, and most importantly, care about hygiene, go the lengths we do to prevent catching anything. Some even resort to getting vaccines when offered. But we lived on with our lives. We had things to do.
But at no time, do I recall ever hearing the war cry like I hear today, “stop living in fear!”
Covid19 and unfortunate connection to politics has changed not only how we protect ourselves, respect others, but if we even believe a virus or illness is serious enough, or even exists. I know that I have never seen this type of attitude before in my life.
So, we are recommended once again, to do the most basic of things, wash our hands, and cover our mouths. As the messages get ignored, the advice turns more urgent, recommending additional precautions, such as distancing or not gathering in crowds or wearing a mask, which became even more of a contradiction in messaging because we were not prepared for a shortage of masks, ignoring the fact that our first responders needed the masks so that they could stay safe to save the lives of the sick. Too many felt masks were not necessary because of that mixed message and then the conspiracy theorists ran with all kinds of stories, burning our country like a California wildfire. As for the distancing, instead of being about safety, it became an issue of sacrificing our freedom. Seriously, I am not old enough for the polio outbreak, too young for the flu pandemic of 1917, and all of the other epidemics, but I do know, that I have never seen anyone, or entire populations who felt their need to party and gather outweighed their common sense, and in some cases, political pride.
But if you are like me, even if you have your spleen or no other vulnerability, if you make the choice, to follow advice given to wear a mask or keep distances, there is a compulsion to accuse us of living in fear. And not only is that wrong, but it is hurtful, emotionally, and as far as mitigating the crisis.
I actually have several reasons for following the recommended precautions, and not just for my health issues. This was the last photo with my daughters prior to the virus outbreak. In order to facilitate my next visit with them, I needed to avoid the virus. And then there is also the thought, I did not want to be someone responsible for spreading the virus myself. This is can hardly be called “living in fear.”
I must admit, my patience does get tested whenever I hear it.
A couple months into the pandemic, a zoom conference was held (not the one pictured above), involving fellow long term survivors of Hodgkin’s Lymphoma like myself, many with the extra vulnerabilities that I have. The guest speaker was a doctor who specializes in dealing with these late effects, who coincidentally happened to be the doctor treating me.
The majority of the viewers already previously “knew” of each other, and it would be fair to say, that we all have been living our lives as best we can during this crisis, definitely, not in fear.
One of the questions that did come up, obviously on the minds of many of us, what information might he have pertaining to our vulnerabilities and complications, should we contract Covid19. We already had heard plenty from “healthy” people or other non-Hodgkin’s related people with recognized vulnerabilities. We wanted to know the potential impact on us. The truth is, he did not know, other than the obvious warnings for everyone else.
But the doctor did muse over the concept that he was intrigued by that information, this particular group of patients, long term cancer survivors, and the issues and percentages that would be faced during this crisis.
We still do not know all the facts, percentages, preventions, treatments. We do know that the death toll in the United States is now over 180,000, victims of all ages, ethnicities, regardless of gender, regardless of health. The majority of us long-termers know the risks and potential issues if we come down with Covid19, and the likely outcome.
But here is the thing. And it is nowhere near scientific fact. Out of the 5.7 million cases in the US, I do know of more than two dozen people who have had Covid19, and at least five people who have died from it or complications. As I mentioned the doctor wondering about us survivors, I know of several who have faced Covid19. Some had quite severe cases, and some were mild. Miraculously, we have not had to mourn anyone. Again, this is not scientific. The odds are clearly against us. With many of us having lung issues, once this gets into our lungs, or we end up on a respirator, the odds are catastrophic of our survival, or at least they should be.
Here is my theory why my fellow survivors, at least the ones that I know, are beating these odds. Awareness. Our willingness to advocate for our care. We know how serious Covid19 is. And we know the precautions that have to be taken with our bodies with normal circumstances. But even in those most common situations, if we do not advocate for ourselves, mistakes and carelessness can lead to tragedy. So we tell our caregivers about our fragility whether we are having heart surgery or a tooth pulled. And when it comes to Covid19, many of us have to give the news to medical personnel, that some of the options being used, cannot be used on us, because it would cause more harm.
For instance, oxygen is a common treatment during Covid19. But having had the chemo drug, Bleomycin, I cannot get straight oxygen for the possibility of reactivating a drug, dormant and remaining in my body. I cannot get Dexamethazone or Hydrocholoquine because of my existing cardiac issues. And we all know the bad news that comes with being put on a ventilator long term, the likelihood of coming off of it, not good. Those who do not have these pre-existing issues, or worse, not aware that they have them, clearly do not have this advantage, or opportunity.
So, don’t point your finger at me, at tell me that I am “living in fear.” I am doing what I have always done. I adjust to the circumstance, and I prepare for the possible. My awareness, perhaps like my fellow survivors who have faced Covid19 and beaten it, makes a difference, and if it matters, does not impose on you. And the best part, it might even benefit you. But I am not afraid, at all, after everything that I have been through? Hardly. I have things that I still want to experience, most importantly, spend more time with my daughters. I do not want the guilt of someone catching Covid19 from me. Whether you know me or not, I respect you enough to not expose you to this risk. Is it that much to ask the same. That is not “living in fear.”