Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “September, 2021”

13 Sep 2021
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A Diagnosis With No Name For It


My friend and fellow Hodgkin’s Lymphoma survivor Danny shared this meme on his social media page. Today marked a monumental day for him as he marked his 30th year as a cancer survivor. Like me, and many others he joins a large group of others who have marked this milestone, On to the next milestone for him.

So what comes to your mind when you hear the words “long term cancer survivor?” The average person may think that it simply implies just as it is written, survived cancer a long time. Back in 1997, I was introduced to an email support list that was called “long term survivors.” I had been in remission less than ten years at the time, so personally, I felt I did not fit the description of having survived cancer that long. At the insistence of a member of that list, I enrolled anyway. Soon, I would learn an entire different meaning of “long term cancer survivor.”

Almost immediately, I realized something different about this email list than what I was not expecting. Sure, there were people who had survived decades, several decades in fact. But there was something else about the members in this group. They all had health issues, and these issues all seemed attributed to their treatments for their cancers.

Without getting too far into the weeds, I will use myself as an example. Thirty-two years ago, I was treated with a high dose of radiation (no longer used) and an ultra toxic chemotherapy (no longer used) to treat my Hodgkin’s Lymphoma. Back in 1989, while the immediate side effects were known, such as nausea, hair loss, and fatigue, little if anything was known as for in the future, potential side effects that may develop. Potential issues were a secondary cancer, or enlarged heart. Fast forward, this is my reality.

  • cardiac issues – double bypass, stent near the heart, stent in carotid artery
  • pulmonary issues – restrictive lung disease, “dead” lower left lobe, multiple unidentified spots on both lungs
  • endocrine issues – thyroid disorder, diabetic
  • gastrointestinal issues – risk of esophageal cancer, diverticulum, reflux, swallowing issues
  • spinal issues – osteopenia, facet joint arthritis in spine
  • muscular issues – radiation fibrosis, severe muscle loss in shoulders and neck

There is more, but you get the idea. On this email list, and on future social media pages, there were actually many “long term survivors” with similar or other issues. And it is true, we have survived cancer a long time. But when we talk among ourselves, we refer to ourselves as “long term survivors,” which of course, having a different meaning. While all of the issues that I mentioned above can have their own diagnosis, and clearly diagnosed, there is no name or diagnosis for the multitude of issues collectively as a group, all related to the late development from cancer treatments received long before.

So, as you can see, “long term cancer survivor” has two meanings, someone who has survived cancer a long time, and someone deals with all of these extra issues related to their treatments.

During the 1990’s, with the help of the internet and social media, patients/survivors, soon discovered that they not only shared similar cancer histories, but also similar complications of their health later on in life. So, fast forward to the long list I wrote. If you were lucky, you found a doctor who understood the correlation between the cancer history and the current health issues. But those doctors were few and far between. And worse, administratively, insurance companies had no idea how to code things that just did not make sense for the demographics of age. When it comes to applying for disability, one of the above mentioned ailments may not qualify by diagnosis, but all of them combined, having reduced quality of life and reduced functionality should qualify for disability, but there is no name for that.

We could call it “long term survivor syndrome,” but that takes what is considered an inspirational phrase, and gives it a negative connotation. Coming up for a group name for our issues collectively is only one issue, getting properly diagnosed, properly treated, and properly followed up is another. It sound easy, but it is not. Let’s take my double bypass. I was 42 years old, in fairly good condition, but had major chest tightness. On a whim, my family doctor out of curiosity ordered a test that would not have been ordered normally on someone my age and “healthy” appearance. It saved my life as I was diagnosed with a “widow maker” blockage of a main artery to my heart. That was discovered eighteen years after my last treatment attributed to cumulative and progressive radiation damage. Nobody had been looking for that to happen. I just happened to complain about a symptom. Soon after, all the other stuff was found.

I am one of the lucky ones. I found a doctor, who understood these issues, and combined with my personal physician, both work as a team to maintain my issues. Maintain, because these issues are progressive in nature, cannot be reversed, cannot be stopped, but can be maintained. While medicine is finally catching up with these late developing side effects and how to handle them, there is one more issue that still cannot be taken care of, at least to my knowledge.

There is a risk when it comes to operating on someone with my issues, due to the treatments similar to what I underwent, uncontrolled bleeding and difficulty healing. In fact, it has been my experience over the years, it has not been the procedures that have led to fellow survivors passing away, but rather, issues after correction has been attempted. This extreme risk, in spite of being faced with the necessity of life, usually leads to the denial of any procedure as extreme as a transplant of any kind. I have known several other survivors over the years who have needed either lung or heart transplants, only to be told, their bodies had gone through too much and would not be able to handle it, or the risks of the surgery considering our history were too great to permit success, even though their death would be imminent without the surgery.

In other words, medicine can fix everything with your heart individually, each time with its own risks, but to do a complete transplant, which would take care of all the radiation damage to the old heart, just won’t happen. Up to this point, I have known no one personally, who had been approved, or attempted any kind of major organ transplant, until this year.

The world of cancer survivorship issues had met their match with “Amy.” The condition of her heart was so bad, the only option for her, was a heart transplant. And of course she would be denied. And denied again. And again. Always for the same reason, too much of a risk. But anyone who was familiar with her, knew that in her personal life, she was a successful and determined woman. And at her young age (seven years younger than me), she was not about to give up. Just like many of my fellow survivors, having difficulty finding someone to help us with our issues, so did “Amy” have even greater difficulty finding just one surgeon, willing to do the surgery, that she was not only willing to risk, but was her only hope.

Years later, she finally got that approval, finding a doctor willing to do the transplant. The only thing left to do, was to wait for a donor. She got the call that her status had been moved to high priority, and was admitted to the hospital to wait. Sadly, a pre-surgical procedure led to complications for her, and though she got through those, time had run out with her heart.

Among my fellow survivors, who spent a lot of time getting to know her, we were often the recipients of her selfless support she offered to everyone, in spite of her struggling health, a loss now being felt of major proportions. Her picture is who she was, someone who was optimistic and supportive, through all times, never giving up hope. I know and understand the risks that she faced with transplant surgery, and how badly she wanted it. Selfishly, I wanted it as well, because she would have become the first person I knew to undergo a transplant, which would mean that medicine was continuing to evolve in the much needed care of long term cancer survivors, er…umm… or whatever you want to refer to us as.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart
12 Sep 2021

All I Want To Do Is Laugh A Little, And Listen To Some Good Music


If there is one thing that I do truly miss since our world was overrun with Covid, is live music and entertainment. Of course, it was hoped, that after sixteen months, and the hopes of a vaccine, that our world would finally get back to some semblance of normal. Musicians and comics and other forms of entertainment were ready to go, rescheduling tour dates, working on safety protocols, all while caring for themselves, while they wait for the curtain to be pulled back up again.

Throughout the Summer, it looked like it was going to happen. The US had finally gotten its daily caseload down under 10,000 new cases a day, something not seen in over a year and a half. All the mitigation efforts and strategies were paying off, in spite of resistance from so many.

Then, people got careless.

REO Speedwagon (with lead singer Kevin Cronin tested positive), Bush, Stone Temple Pilots, Florida Georgia Line, Garth Brooks, Stevie Nicks, countless music festivals, and brace yourself, even BTS have made the decision to cancel their tours once again. And if you are like me, having hoped to catch “geezer rock” band Kiss one final time, the chances just got diminished after guitarist Paul Stanley tested positive, followed by the demon himself, Gene Simmons tested positive. Other bands are continuing on, likely just a matter of time until they face the same fate at the rate our country is accepting what Covid does and decides a certain minority finally decides that it needs to step up.

Comedians have also experienced the same situation, though their venues are much more intimate and compact, making things even riskier.

Recently, some have decided to become vocal about all the precautions that are being put in place as we continue to struggle getting through Covid19. It is understandable, entertainers are losing tons of money, because that is what they do. And while I have always made it clear, that I am 100% for the freedom of speech, I must admit, I am disappointed in the approach some have taken. Musicians and comedians have never lacked the ability to communicate their politics and opinions. And I can take them or leave them. Like most, I don’t go to a concert to hear politics. I am there to hear the entire new album played live. If I expect a speech coming, perhaps I will make the decision, not worth the paycheck I spend on tickets.

But something unfortunate is happening right now, and it should not be that difficult. It is for the better of mankind and of human health necessity. Venues are placing “requirements” for events to take place. It makes sense. When we found out that second hand smoke caused cancer in non-smokers, the non-smokers were protected, while still allowing the smokers to enjoy their cancer sticks, just not indoors where non-smokers would be trapped. Both smokers and non-smokers were able to enjoy meals wherever they wanted, even in the same establishment, just not have smokers blowing smoke, causing harm to others.

The same argument applies to Covid19 mitigation efforts. It is a false claim that “freedom” is being taken away because you are asked to wear a mask somewhere, have a negative test, and/or have received a vaccine. Depending on the venue’s requirements, everyone is still able to attend and enjoy. There is no freedom lost. You have the freedom not to partake if you do not wish to follow the recommendations, or in some places, now mandates. But what you do not have the right to do, is infect anyone. And since some who are positive for Covid may be asymptomatic, that means not showing symptoms, those positives are carriers spreading the virus, infecting others who may not be as fortunate. This is no different than the second hand smoke argument. Exposing others to Covid19 through intention or ignorance is just as dangerous and deadly.

What I do not understand, is that the United States, and every state within it, has the legal tool it needs to not only shut Covid19 down, but to deal with anyone who intentionally causes harm by knowingly infecting someone else with a deadly disease. I am going to post the link so you can see just how simple it would be, to include Covid19 on the same level as how HIV was dealt with. Yes, it is illegal in most states to knowingly infect someone with AIDS. It should be no different if you recklessly expose someone to Covid19. The criminal aspects are left up to the states, while other regulations are left up to the federal government.

https://www.cdc.gov/hiv/policies/law/states/exposure.html

And before I move on, before people start posting stuff how the government cannot mandate vaccines, yes, it can. And the Supreme Court has upheld that mandate in the past. Again, keeping it simple, the year is 1905, the case is Jacobsen vs Massachusetts, about the small pox vaccine. The Supreme Court ruled for the safety and health of the population. Small pox killed hundreds of millions of people from the year 1900 until vaccines put the status as “eradicated” in 1977 (in other words, no longer). Who knows how long small pox was actually around, but a vaccine became available at the turn of the 19th century (that’s the 1800’s). In the case of Jacobsen, the smallpox vaccine was mandated in 1901. In spite of his opposition, the Supreme Court ruled it was in the nation’s populations health and safety, to rule against Jacobsen.

The same will happen with Covid19. While smallpox killed hundreds of millions world wide, that is over hundreds of years. In Jacobsen’s case, around 300 people died from the outbreak in Boston in 1901 (compare that to the dead from Covid19 in 2020/2021, there is no comparison). World wide, in less than two years, there have been nearly 300,000,000 million cases, 42 million in the US alone. 4.5 million are dead around the world, 677,000 dead in the US (not including Florida since they do not report their information accurately.

Yes, the case can be, and will be made for mandating the Covid19 vaccines, which are safe.

But what set me off this morning, was a comedian. There are some comedians who have been protesting mitigation efforts, and I get it, because for them it has never been about their act. It has always been about their political platform, and that is their right and their ability. Honestly, they are not that funny anyway. But the comic I heard this morning, threw me for a loop, because, while I do think he is funny, and I do get annoyed with him injecting his personal politics into his act (I have no objection to hammering both political parties), he crossed a line.

Beyond “Goatboy,” he really is a funny comic. He has also made it clear, that he does not take Covid19 seriously enough to be concerned for others. And while many conspiracy kooks and anti-vaxxers are just way off the charts, what he said this morning was horrifying. On a Facebook live post he claimed “God is good”, he was going to fight segregation (a conspiracy term used the anti-vaxx movement), and then explained his defense. I want to be clear, I get the whole “distrust of government,” and as far as Covid19 is concerned, that started with the former president, the way the health agencies had to tapdance around his ego, and the current administration and how they are trying to deal with the long term opposition of common sense. I get that. Trust is a hard thing to restore when you blow it.

But Bruer went too far, encouraging his viewers on the post, to even stop believing their doctors. I could not believe my ears. Of all the things I heard, this was the most fucked up! Bruer’s claims is that our doctors are all in together with the government and this “scam.” Bruer then goes on to say, he would “rather go bankrupt” than to give in, in other words, to hell with any of his fans and any concerns of health.

Admittedly, I do not know if Bruer has had any personal experience with Covid19, or knows anyone who had been so sick or even died from Covid19. If he did, then he is a complete sellout just for his schtick. And if he has not, then he ought to just shut the fuck up and consider himself lucky, because people have died from Covid19, and are continuing to die at a ridiculous rate, when we have the means to prevent it, but assholes like Bruer doing all they can to oppose it for their own financial gain.

And that is just baaaaaaaaaad for all of us.

Posted in Bullying, Education, Family and Friends, Inspired By..., Politics | Leave a comment
11 Sep 2021

Do You Remember That Day?


There are moments in time, that stay forever etched in our memories, where we were, what we were doing at that moment. For my grandparents, of course it was the Great Depression, the attack on Pearl Harbor, and “the bomb.” For my parents, it was the assassination of President John F. Kennedy. For me, the senseless murder of John Lennon, the space shuttle Challenger disaster, and on this date, twenty years ago, the unthinkable, an all out attack on US soil from an international effort. Sure, we have had our wars in our history on US soil, but this is the first time, on the mainland of the United States, we were attacked. It was unthinkable, and unforgettable.

In the late Summer of 2001, there were two thoughts on my mind. I was in the process of purchasing my first home, a four bedroom colonial with a fireplace, and an inground pool. While the fence around the house was not “white picket,” it would seal the image of what was to lay ahead in my life, a family. My closing was just less than two weeks before September 11, so between work, unpacking, and settling in, I was quite busy.

My employment was less than a three minute drive from my house. It was a typical and beautiful September morning. I arrived at 7:00 am as usual for my start at 7:10 am shift. My day was broken into four blocks of time, separated by breaks and a lunch. After completing my early morning’s assignments, I proceeded downstairs to our breakroom as was normal for me. I would typically log on to a computer to either do some job related training, or deal with some emails.

But as I arrived to the breakroom at 8:55 am, where I would normally only see two or three of my co-workers, instead, there was a group of at least fifteen others, surrounding our countertop, with attention drawn to the television.

It appeared that an airplane had crashed into one of the two towers in New York City. It was a horrifying sight. There is not a Hollywood scenario I had ever seen play out on the screen that mirrored this type of event, or rescue. We all stood there, watching the smoke billow out from the skyscraper, and then horror happened a second time, another airplane crashed into the other tower. All of us knew at that moment, this was not an accident. But the question is who and why? We have had “hijackings” before, but never like this. Soon after, news of another plane crashing into the Pentagon, and another in a field in Pennsylvania. What the Hell was going on?

Throughout the rest of our work day, we would work to complete our assignments as quickly as possible, to return to the breakroom to see, if it had gotten any worse, and if so, how. On the drive home, radio stations were now just callers phoning in to express their horrors and feelings, and surprisingly, allowed to do so in uncensored manner with F-bombs flying everywhere. The passion was immense and uncontrollable.

Of course, we know what happened on that day twenty years ago today, by who, and why. The events of 9/11 would now join the other memories of tragic events in my head, though clearly, the greatest WTF moment. This day would change everyone’s lives forever, all in different ways. Tragically, I do know some who lost loved ones that day. Miraculously, I know some who either survived or through divine intervention, were not in that fateful place when they were supposed to be.

For me, at that time, I did not have much personal connection to it, other than having been a tourist in the past on school trips to New York City. As an adult, I will never forget my first drive to Manhattan, approaching the turn to the Lincoln Tunnel, now a “parking lot” of traffic with vehicles being searched one by one before entering the tunnel, able to take a long look across the harbor, and the shock of no longer seeing the twin towers standing where they once did. I had never seen the skyline that way.

It was October of 2001, and I was driving to New York City for a taping of the People’s Court as I had a case against a local pet store that grabbed the producer’s attention (spoiler alert – I won). Though the attack a month earlier was still so fresh in everyone’s minds, and how it was affecting our daily lives, as I walked the streets upon arrival, I could see that most in NYC, clearly had moved on, not letting this act of terror affect or intimidate them.

Months later, I would face my first challenge with our country’s new reality, having to fly. There were new procedures at airports, and of course, always the fear, that this could happen again.

Three years later, I would become a father by travelling overseas to adopt my daughters. The terror attack on 9/11 was no longer a deterrent in my mind from carrying on. But I have not forgotten. In fact, since then, flying had become a regular part of our lives with vacations.

But now, my daughters much older, and clearly they were not born yet at the time the attacks occurred, I am curious about what they learn what happened on that day. Only now, as I watch documentaries such as one dealing with the classroom of students when then President Bush received the news, what impact did that have on the students who are now 27 years old?, or an innocent documentary on a new firefighter turned into an actual “in the scenes” documentary inside of the twin towers themselves as the attack progressed, it is quite upsetting to see all the details that I was unaware of.

And that is what today will be. There are a lot of documentaries of the events of September 11, 2001 being played on television today. Emotions will likely be as raw as they were twenty years ago, for many, even more so depending how they were impacted.

As I mentioned to my daughters the “events that affected your life” conversation, I did not even ask my daughters if they have experienced anything like that yet in their young lives, but wasted no time in responding, Covid19. Covid19 is their lifetime event, permanently etched in their memories.

My daughters know what happened on September 11, 2001, though they cannot comprehend how it could have happened, let alone, actually happening, to the United States, in the United States. One thing is for sure though, I, they, we, will never forget.

Never forget.

Posted in Education, Family and Friends, Inspired By... | Leave a comment

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