Paul's Heart

Gone, Not Forgotten

I am planning on this post being my last one about Covid19 for a while. No, I know it is not completely gone, if it will ever be. Everything we have learned over the last two plus years, hopefully will have us not only better prepared, but hopefully a better way for all to unite together for the common cause, next time something like this happens.

With other news stories dominating the headlines from the war in Ukraine to the slap heard round the world, the United States passed 1,000,000 deaths from Covid19, and there was never even any mention of it. Just as mass shootings or other tragedies, we have grown immune to the numbers coming from Covid19. There is good news however, as we finally seem to be nearing a sustainable level, to allow a “new normal” way of living, yes, with Covid19, just as we do with the flu, and other illnesses.

And with the lowering of the numbers, I felt with all the safety precautions still in place or at least advised, it was time to do something I had not done in over two years, travel to see my mother. In my lifetime, I have done my share of flying, but returning to the inside of an airport terminal for the first time since Covid19, the changes and procedures reminded me of when airport procedures changed following September 11. Yes, going through TSA had not changed with all of the inspections, although for me, having three new metal devices implanted in me from recent surgeries garnered me some extra attention.

The airports were a lot more crowded than I honestly felt comfortable with, but, I felt safe enough, as mask requirements were still in place. With the exception of the time on the plane, I kept safely distanced. I knew, with considerations planned ahead, this was a trip that would become how I live in a world that will always have Covid.

There was one moment however that stuck out to me, and one that I am okay with no matter what the attitude is or where.

The mask. I live in a state that has a kind of naive approach to the mask in either not believing in at least some benefit to the protection from the mask, or political theater. But back in my home state, the looks I was receiving for continuing to wear a mask, were more militant and threatening, assuming I believed in their claim that their state was tyrannical (newsflash – we have no state that is run under tyranny). It was really odd, just how strongly different the two states were in attitudes. Where I live, the numbers have shrunk of those advising me that I “do not have to wear a mask,” with some still trying to convince me that masks have no worth. But where I was now standing, back in my homes state, were glares that I was supporting a communist regime operated state government.

Here are the facts. After 28 months, I still have not tested positive. And that is not because I have not taken a test (remember that old theory – cases will go away if you stop testing?). I was in fact tested, three times, all for surgical procedures that I needed a negative test for, to save my life. It is simple, if you have it, it has nothing to do with the test.

Throughout the pandemic, I supported local businesses and restaurants with either take-out or curbside pick-up, only from businesses however, that demonstrated concern for the customers back in the beginning. The fact that some restaurants were only actually cleaning tables regularly after every customer at the beginning of the pandemic, and not before, is gross enough. And to their credit, the places I solicit, do still provide that better cleaning and sanitation. But others, went right back to the attitude, cleaning tables was secondary in thought.

Along with picking up take-out, I go to the grocery store and pharmacy myself. I put gas in my car myself. I do it at times that are slow, such as early morning or later in the evening to avoid crowds, something I do not care for anyway.

Physical fitness has been a little more difficult to pull off, but probably most important of all, especially with all of the cardiac issues that I have. But as I completed cardiac rehab, now for the third time, I learned how to exercise during Covid19 from air circulation, to sanitation of equipment, to distancing between others. And yes, all while wearing a mask. During that period, even those that were in their 80’s of age, were able to exercise while wearing a mask. My only decision is where to exercise. Do I go to a commercial establishment with all the fancy and current equipment, but with complete disregard for sanitation? Or do I use the fitness room where I am at, with no improvement to air handling, an honesty system for cleaning the equipment and for being positive or not for Covid19? I chose the latter with one other step, I go to exercise when I am the only one there. And I am okay with that, again, regardless of Covid19. If someone comes into the exercise room, I am okay with leaving.

I even took a small vacation with my daughters last year, during a previous “low Covid19 count” period. And we did it without testing positive ourselves afterward, because we followed recommendations.

My point is, the war cry by some, “living in fear,” ironically is not about how I choose to do things to protect myself from Covid19. I am actually living smart. My cardiologist has been clear right from the beginning, a diagnosis (at least unvaccinated) of Covid19, would kill me because of the condition of my heart. And we know the danger to heart from Covid19 as cardiac complications are up to six times higher if unvaccinated. And take it from someone with a compromised heart, the risks of something else make things all the more risky. Over the last few days, a fellow long term Hodgkin’s survivor passed away from cardiac arrest, following successful surgery from breast cancer. The human body can only take so much trauma. And I gave up nothing as far as the other war cry, “freedom,” as I have listed everything I have been doing, freely.

Do I have to go to the movies? Nah. I have not felt the need to see anything, and have no desire to see a movie that should have been a catalyst to get me back into the theaters, “The Batman,” but nope, not interested. Concerts? I have seen my share in my life.

Besides no desire to sit in a packed theater or arena wearing protective gear as if attending Galagher doing stand-up sitting in the splash zone just to protect myself from ignorant pigs who do not cover their faces when they sneeze or cough (as I have mentioned, this fact worries me more than Covid19 itself), the ticket prices are outrageous. And I understand, artists livelihoods were cut off over these two years, and they obviously want to make up their losses. I do not fault them for that.

Look, there were things that were done correctly during the pandemic, and there were things that were done wrong. Discoveries for diagnostics and treatments happened at lightning pace, while preparedness for medical supplies, staffing, and patient capacities fell way short of need. Communications were rushed, often incorrect, that when anything followed after, would be automatically subjected to doubt. And for the first time that I can remember in my lifetime, politics would erode common sense, when faced with a common enemy, disaster, or epidemic/pandemic (keep in mind, our country always did what it needed to do to stop other virus outbreaks).

It is my hope that we have learned so much over the last two years, for when the next “outbreak” occurs, because we know it will happen again. History has taught us that. Covid19 was no flu, no matter how anyone wanted to say it was. With eradication of Covid19 impossible, there will be flare ups just like there is a seasonal flu, and that will be the only comparison. It would take 17 years for the flu to have a death toll as Covid19. Unlike the flu, Covid19 had no test, and had no treatment or prevention. At best, all we could do was follow recommendations that would help reduce the possibility of contracting and dying from Covid19.

Yes, people will still die from Covid19, and people will die from the flu. Both have tests, both have treatments, both have vaccines. But what those three solutions and mitigations will not do, is resolve the politics that got in the way of common sense that could have and should have saved hundreds of thousands of lives.

But now, like every other virus I have had to deal with, I have now learned how to live in a world with Covid19 and I can do it. Are the masks perfect? No. Distancing? I do not like crowds anyway. Food? I still get great takeout. But when you seem me with a mask on, I will not apologize if it triggers something in you. Nor will I explain why I am still wearing the mask. I know why I do, and it does not affect you.

Hodgkin’s Survivors – Like A Set Of Tires

You are looking at the title, and the cover photo, and wondering if I am having some sort of crisis. I assure you that I am not. But as is prone to happen to me in the course of a day, something prompts me for a post, only to be given a stronger example. Please, just indulge me, and follow me.

So this morning, as I was getting ready to run out for a few errands, I looked up, and noticed a light bulb out. It is just a bulb, but it is frustrating me. Over the last several years, I have replaced it at least twice, nowhere near the “1000 hours” of life advertised on the box. The other two bulbs in the light bank, do not burn out. For the record, though I have not kept count, pretty sure I have not hit the “1000 hour” mark. But what makes the one in the middle go out repeatedly and not the ones on the outside? Just something that made me go “hmmmm…”

The first task of my day, was to get an oil change. Usually an uneventful thing to get done with a car. But, I noticed, my car had begun to start slipping on wet surfaces, and it was just my opinion, after seventy thousand miles, it might just be time for a new set of tires. I asked my mechanic to take a look at my tires, and if needed, order me a new set of four.

The mechanic took a look, and said the back tires looked good, only the front tires would have to be replaced. It caught me off guard. I looked at the front tires myself before going to the garage, and I could see the treads were gone, and just assumed all four tires were that way, without looking at the rear tires. The mechanic proceeded to show me the difference in the tires, and he was clearly correct. In fact, with the two new tires on the front, the treads were almost identical to the tires on the rear wheels.

In full disclosure, normally, every car I have ever had, I have rotated my tires regularly. This was to make sure the tires wore evenly. But things happen. A tire could be under or over inflated and cause a tire to wear unevenly. Perhaps a manufacturing defect could result in the cords of the tire coming through before the other three tires. I admit, for the first time with a car I owned, I did not rotate these tires. All four tires were put on at the same time, a few years ago, yet only two wore out, both on the front, but not the rear two tires. Again, why did this only affect some of the tires and not all of them?

Now that I have you caught up to speed, understanding the issues that I have to deal with as a long term cancer survivor, others may have different issues, and some may have none. And there is no rhyme or reason. Science may explain some of the things, but the “why not for everyone,” can add to the complications for us emotionally. If strong enough, these differences, when known, can stir up an emotional issue I have with my survivorship, “survivor’s guilt.” Simply put, “why is this happening to me?” or “why is this not happening to me?” The strongest trigger for me, is when a fellow survivor passes away, their body no longer able to deal with the amount of trauma it has endured over the years. Do not mistake my survivorship guilt for being ungrateful. Nothing could be further from the truth.

Yes, like a set of four brand new tires, cancer treatments for a particular cancer, should result in the same results during and after treatment. But do they? No. They do not.

I need to preface what you are about to read with a disclaimer. A lot of progress has been made in the diagnostics and treatments of cancer. I am thirty-two years out now for the treatments of Hodgkin’s Lymphoma. And over those decades, my treatments are now considered either obsolete, or have been modified to be done much safer, with hopefully the same success of remission, and less risk. So the rest of this post, it is going to be geared to us survivors of Hodgkin’s Lymphoma from the 1990’s and before. There is too much to unpack to cover everything, and the point of this post, is to demonstrate the fact that there is no rhyme or reason, why some of us develop late side effects from our treatments, some do not, and those that do, many not develop issues that others may develop.

Up until the 1990’s, the extreme high dose of radiation therapy used, and toxic cocktails of chemotherapies were administered without much knowledge of potential side effects developing later in life, should a Hodgkin’s survivor live longer than five years, a standard in the world of cancer for life expectancy. But the fact is, with Hodgkin’s having one of the highest rates of remission, there are hundreds of thousands of us, and many are in remission even longer than me, forty and fifty years. Unfortunately, back when we were treated, there was no real plan for following up, to monitor for any late side effects, because none were known. It was never studied, because we were not supposed to survive cancer for decades like we have. But we did, and we do.

Here is where my tire analogy comes in. I have a few fellow Hodgkin’s survivors who were treated around the same time period as me, were the same stage (or level) of cancer, and treated with similar methods. But our late issues are mostly all different, whether they have occurred at a different pace, different health issues, or perhaps none at all. Some of my fellow survivors faced not only a relapse of Hodgkin’s, but some, secondary cancers, even more than one. I have had two close calls between a suspicious spot in the radiated area of my neck, and a nodule of my thyroid. I do have two other potential concerns for cancer, of the esophagus and lung cancer, areas both in the radiation field.

Cardiac wise… wow, where to begin. This I feel is one of the most underrated areas of follow up for us. Because the majority of us are fairly young, yes, I consider 56 years old to be young, standard cardiologists underestimate the potential for cardiac disease and heart failure, a result of complications from our treatments. I was 42 and dying when mine was discovered, by accident, eighteen years after my treatment. A “whim” by my primary care doctor, saved my life, and set me on a rigorous path of care and follow ups. Since then, I have had two more heart surgeries, and will likely have more in the future. Some of my fellow survivors have not had this experience.

Not everything is visible to the naked eye either. The dentist will notice issue with the teeth and jaws. Muscles in radiated areas are easily noticed with a shirt removed, perhaps one shoulder hanging lower than the other. Spinal deficiencies and changes can sometimes be noticed.

You could go through all of the body’s systems of my fellow survivors, and you would see, just as a brand new set of tires, or a light bank, everything will likely occur at a different pace, if at all. The tragedy, along with those who pass away, not having had the ability or opportunity to monitor their health, which could have made a difference, is that there are hundreds of thousands of survivors who still do not know this. On the peer support pages I participate, I believe membership numbers average around 900+. Only 900 survivors out of hundreds of thousands of survivors are definitely aware of what may be happening to them. The rest, like me originally, will need to have some luck, a doctor who has the open mind, to probe a little further, for a condition that does not make sense either with the symptoms or the age of the patient. Because medicine has not caught up yet. And though my fellow survivors and I do all we can to communicate our issues, it is not enough, and it is not happening fast enough.

Finally, the crass comparison of survivorship to tires? Cancer survivors would be Michelen Sport PAX tires, some of the most expensive and high quality tires which even if they suffered a nail in the tire, would still keep running. Therefore, it is all about the wear and tear, for both the tire, and the cancer survivor, and clearly not all are the same.