Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “May, 2022”

Done Asking What It Will Take

It has happened time and time and time and time and time again. And no matter who are the victims, or where the violence occurs, the cycle is repeated over and over and over again. As a country, when twenty innocent babies, six years old, were slaughtered by a deranged killer in the one place they should have felt most safe, elementary school, we said back then, “this could never happen again.” Twelve years and many mass shootings later, it has happened again, this time, nineteen innocent babies, aged nine to eleven years old, mowed down by over one hundred rounds of ammunition, by yet another deranged and evil killer.

How does this keep happening? Wait, that is a foolish question to ask, because we know the answers, and “answers” is pluralized because there are several factors. No. The question is “why does this keep happening?” The answers should be obvious, and the goal should all be the same, whether it be school, church, the mall, or a movie theater, we should feel safe in all of those spaces and more. The truth is, we lost that guarantee years ago.

It starts with a lack of common sense. We may think we know what common sense is. The term common sense in fact gets thrown about quite too easily, most likely with the assumption that we know what it means. Though the majority of us may know what common sense is, there are still too many who do not. Otherwise I would not be writing this post.

Merriam-Webster defines common sense as “a sound and prudent judgement based on a simple perception of the situation or facts.” For example, if it is raining, and umbrella would help to keep me dry. There were much larger meaning examples I could have used, but I kept it as simple as I could. Common sense. An umbrella covers you. So if it rains, it should protect you from getting wet. Common sense.

Common sense has been thrown out the window. With gun violence now the leading cause of death for children, just look at that, “gun violence the leading cause of death for children,” (as stated by the CDC), not cancer, not car accidents, GUN VIOLENCE! Cancer is not very preventable and car accidents are unpredictable. But gun violence is something that can be prevented. And yet, it is not. Our government leaders, lobbyists, and the ever powerful NRA shout “more guns”, “arm teachers” (would not have helped in Ulvade as the killer actually wounded three officers, and it is a stupid thought anyway), and both sides of the political spectrum are so dug in, I do not expect to see any reverse in gun violence statistics in my lifetime, which is so sad for my daughters, as they will raise their children with this violence. Most of you reading this are old enough to remember back in school, WE DID NOT HAVE MASS SHOOTINGS IN SCHOOLS! And before anyone chimes in, “that’s because we had Jesus and prayer in our schools.” No, we did not. At least I did not, from the years I was in school, from 1971 to 1983, there was no religion taught in school, and no prayers were spoken. None. And we did not have mass shootings on a near daily basis.

So enough with pissing on our shoes and telling us it is raining. These are not the solutions:

“more guns” = nope, we have more guns every year, and all we have seen is more violent crime and mas shootings.

“arm teachers” = nope, we need our teachers to keep our students safe, something that should not be that hard. Their attention cannot be to pursue the attacker leaving the children vulnerable. Again, trained officers were wounded in this recent attack.

“guns don’t kill, evil people will find a way to kill if that is what they want to do” = yes, that is correct, but all efforts must be made to reduce if not eliminate mass casualties. Depending on the weapon chosen, makes the difference between one person killed and nineteen children. Which is true. While the assault weapons ban of 1994 banned some assault weapons, it did not ban all of them. And while crime with an assault weapon did go down, use of other guns in violent acts did go up. So yes, if someone wants to kill, they will find a way. But there is no reason to have a magazine that can hold more than ten rounds. If you are defending yourself, and cannot get the job done with an AR with ten rounds, you need better training.

“if you ban certain weapons, we will lose all of our weapons” = nope, not even close. This war cry has been going on for decades. And not one president has kept a US citizen from being able to possess a gun, whether a pistol or a rifle. As a 2nd amendment supporter, I support the right to defend myself, and though I do not hunt, I do enjoy some of the treats my fellow hunters share in certain game meats. But in either case, self defense or hunting, I am baffled as to the need to possess a weapon that is used in war, such as an assault rifle. I have tried to ask my friends who have those types of guns, why they have them, and responses are nothing more than a “want”, than a “need.” But if there is that much of a desire to fire an assault rifle, then why are those owners not enlisting in the armed forces if they want that kind of power and destructions in their hands?

“mental illness, mental illness, mental illness” = buzzwords, but no solutions, by ANYONE! To deal with mental illness, we need universal health care, and well, we all know that is not going to happen. And what good is dealing with mental illness, if we ignore the warnings? As usual, it is now coming out, conversations by the recent killers, as far as many months ago, hinted something was seriously wrong. And no one did anything. But there is also the concern over free speech when it comes to someone making a threat to kill someone. Make no mistake, just as the 2nd amendment is not absolute (you do have a right to bear arms, but you do not have a right to own a howertzer), the 1st amendment is also not absolute (you do not get to yell fire in a crowded theater). If someone makes a threat to harm someone, there must be zero tolerance at this point.

An eighteen year old man, in actuality, still just a child with a developing brain, bought two AR’s and thousands of rounds of ammunition. He had over sixty magazines with thirty rounds each at his ready to slaughter. And the mistakes by law enforcement are unforgivable.

But the cycle will repeat. Need proof? Late night talk show host Jimmy Kimmel, as he is known to respond during such tragic events, went as far during his monologue, to offer this rare and unusual request, to that of Senator Ted Cruz of Texas, who has often been the brunt of Kimmel’s humor. He said, he didn’t think of Cruz “as some sort of monster” when it comes to this shooting, as Cruz has children himself. And he spoke to his audience that he really wanted to believe that, and for Cruz to respond properly. Well, I am expecting a different conversation from Kimmel on Monday night, because Cruz actually did what he has always done, while at the NRA convention in Texas, Friday night, zero compassion, defiance of anything that was meant to prevent mass shootings at the expense of the NRA. In other words, typical Ted, and he is a monster after all.

And it does not matter how many of the survivors they interview from this latest massacre, their horrific recall will still not be enough to convince our government to make any meaningful attempt to at least reduce the frequency of the massacres.

So while our leaders continue to spin wheels, go nowhere to even reduce the incidence of mass shootings, I do what I can for my daughters to let them know that not all adults have given up hope.

During a screening of the movie “8th Grade,” there was a scene in which an “active shooter drill” was executed. Keep in mind, in my education, all I ever had to go through was a bad weather or fire drill. My daughters said it was fairly accurate, that the film showed the way it was supposed to be done. However, after all these years, during these drills, and the mass shootings continue to happen, students are often found not paying attention (you know, like those on an airplane not paying attention to emergency instructions prior to takeoff). It was not the student’s behavior that really upset me, but the reason why. And I could not believe this came from my daughter, and yes, students now feel this way. “We know these drills may save some kids, but not all. We just accept that if it happens here, the drill is not going to keep us from being shot.”

My God! It is one thing for us to have grown numb to these mass shootings. But I have no doubt, my daughter was sincere in her assessment. She goes to school every day, with the knowledge that a mass shooting could happen at her school. But if it does, she could die. And there is nothing she can do about it. We have failed our children.

Now I know I will have some respond, “oh, you’re just being dramatic. It won’t happen here.” You mean in a town of 15,000 people. Big violence doesn’t happen in small places? In a small populated area in Pennsylvania, called Upper Perk, on May 24th, 1993, a 15 year old student walked into his classroom, and murdered another student. I know this story personally, because I knew children from that school, who then had to deal with it back then. And the statements are always the same, “how could that have happened here?” Violent crime happens everywhere. It does not matter how big or populated an area is. And it is the wrong reason for a place to become famous, or infamous, like Ulvade, Texas.

While we wait in futility for our government to come up with a solution, we need to have conversations with our children, not just about how to deal with any feelings of despair, anger, hopelessness. We need to have conversation about events like what happened at Robb Elementary School.

Dr. David Schonfeld, according to his autobiography, is a developmental-behavioral pediatrician at Childrens Hospital of Los Angeles, among many other credentials such as the director of the National Center For School Crisis And Bereavement. The point is, he is well respected, and well utilized in his knowledge of handling crisis like Ulvade just went through. He has actually been involved in these efforts going back more than thirty years.

Dr. Schonfeld states that we must have these uncomfortable conversations with our children, to help them through these crisis, even if it was not their school. Because just as with my daughter, who believes that it could be her school some day, has feelings and thoughts that need to be dealt with. It serves no purpose and actually harms our children, if we have them just bury their head in the sand like an ostrich, and protect them from hearing anything like the news coming from us. Our children will hear of tragedies like this, one way or another, social media, word of mouth, or the news. But who should be the most trusted of all when dealing with news like mass shootings? The parents. By not making ourselves available to talk to our kids, will only result in them becoming more upset, because they need to hear the truth from us, their parents.

According to Dr. Schonfeld, we as parents need to help our children cope, listen to what our children have heard. You will be surprised what they actually know. Their concerns will be different than those of their parents. The doctor also states that it is important not to minimize the distress (like “you have nothing to worry about, it won’t happen here”). That distress is real. You must not dismiss that distress or tell them they should not, or have no reason to feel that way. A parent needs to make themselves available to listen to their child in times like these. And just as important, the parent not hide their own distress from their child. Kids are very intuitive, I know mine are. Hiding things from them only will serve to develop mistrust from the one person they should have unquestionable trust from.

I am tired of what has not worked to at least reduce these tragedies, political talking points, meaningless tropes such as “hopes and prayers” which do nothing to bring back the dead children and other victims. I am frustrated that my daughters will never know, and likely their children will never know what it is like, to just go to school to learn, never giving a thought that today could be the day they die in a school shooting.

Something needs to be done. We know it can be. We know the 2nd amendment will not be sacrificed by any regulation to prevent ownership of certain weaponry and ammunition. We know that people are hurting, and that may lead them to do awful things, so we need to pay more attention. The chances are, someone’s ill feelings will be over our heads, and it will be up to us to do something, just like the mantra “see or hear something, do something.” But this cycle of shooting, hopes and prayer, Democrat this Republican that, forget shooting, and repeat is the true definition of insanity, doing the same thing over and over and expecting a different result. It is not working.

From A To Z (Anxiety To Zen) defines “anxiety” as of fear, dread, or uneasiness. It is a safe bet, that anyone reading “Paul’s Heart” has experienced anxiety at least once in their life, if not more. My hope is that any level of anxiety has been limited to small concerns in life, perhaps a trip to the dentist, taking a final exam, or even going on a first date. Others however, have faced much more extreme degrees of anxiety due to an illness, a job situation, some sort of legal case, or some other sort of emergency. How a person handles anxiety, can often have an impact on the result.

I will not claim to never have suffered from anxiety issues, quite the contrary, I have even hit the level of full blown anxiety attacks, which is an entirely different situation as it is something triggered by an occurrence as opposed to the anxiety caused by anticipation.

To my recollection, I have always handled the anxiety from a pending situation, with a thoughtful and calm direction. I cannot explain why or how I even got to be that way. I do not recall anyone setting that example or “talking me down” from being stressed out. But my earliest memory of dealing with a stressful enough event, occurred back in 1986, at work. I was working in retail, and my manager was getting ready to open our store in the mall. It was a Saturday, two weeks before Christmas. Now, if you have never worked in a mall store, there is a chain gate that secures each store. Most, will raise and lower with the simple push of a button.

Well, that morning, the gate would not open. As “Jimmy” began to panic, because this was something neither of us had experienced before, I told him that there had to be some sort of other method to raise the gate to open for business. “Jimmy” had already made it up in his mind that he was going to face some sort of reprimand, that sales were going to be lost, he would be doomed because of this malfunction.

And that is when I recognized my anxiety mantra. “Jimmy, you can’t change anything by worrying. You can certainly make it worse though.” And with that, we located a chain and pully system, that we began to pull by hand, raising the gate ever so slowly. Calm, rational thinking. It got roughly two feet off the ground, then jammed. “Jimmy” went from relieved back to panic. Again, I tried to encourage him that his worrying would not help, and that clearly, this was not his fault. I told him, we were united in what happened, and it was beyond our control. We would deal with whatever we had to and get through it.

That happened before my diagnosis of Hodgkin’s Lymphoma in 1988. Oddly enough, I had the similar approach when I was diagnosed. I was recently engaged (to my first wife), to be married six months later. I had two thoughts. One, I did not want to die, so I would go through whatever treatment was necessary. Two, my fiance may want to rethink our future as it would likely not end up the way she had always dreamed her life would be.

But there is a point in time, after the treatments are done, and you get told that you are “in remission,” that a little voice rents a room inside your head, that constantly haunts you, “what if the cancer is back?” This can be triggered by a symptom that has appeared that is similar to when you were diagnosed, especially a swollen lymph node. We get swollen lymph nodes all of our lives. That is their job as they handle the bad things going on in our body. It is just that one time, that one time, that one lymph node had cancer. So it is very easy to forget how common a swollen lymph node is, when it is replaced with that one time, when you had cancer. This can happen with other symptoms as well.

Another time though that anxiety takes over your mind, is approaching follow ups, and any testing that is done, especially scans. Hence, the nickname “scanxiety”. This anxiousness is at its worst the very first appointment after completion of treatment, because after all we have been through, we do not want to go through it again. So as we wait for blood test results, we wait for a doctor to call us back, and then topped with our subliminal thinking that we might just have symptoms again, that are not really there, we worry.

My approach has always been, I cannot change the results of any testing. If the results are good, hurray for me. If they are bad, I will deal with them. I am not ready to give up yet, even now, so I am prepared mentally to do what I must to get through any bad situation. To stay that focused, I cannot let anxiety rent a room in my head.

There is a huge difference between my manager struggling to get a store gate open, and me facing something that could potentially kill me and the anxieties. Of course, the store was an isolated incident. But my health was something that was going to be faced my entire life. So admittedly, it was not always this easy to control this anxiety in the beginning. But I took it one day at a time, then by the week, then by the month, by the quarter, then by the year. Soon, five years, 10 years, 20 years, and now, I am at year 32. It did get easier to deal with the anxiety and fear of my cancer coming back.

And as I faced late developing side effects from the treatments that have caused some severe situations with my health, I have adopted the same strategy to deal with the anxieties, of waiting for results and corrective surgeries. I know how I would feel if everything turned out good. I know that if something was found, I would have to face it and deal with it. I would find the best hands to care for me and get it done. But I would do it. Anything in between those two extremes, I can handle.

This calm demeanor of mine has come in handy in the regular world as well as unfortunately I have faced several crisis requiring quick and calm thought processes from witnessing and assisting with car crashes, a fire evacuation, and multiple family medical emergencies.

I go through life the same, no matter what I am faced with. I prepare for the worst, knowing every possibility, and I hope for the best.

Now, I mentioned back in the beginning, that I have actually suffered a panic attack, a few actually. These were different that provoked by a diagnostic event, but rather a developing issue. All three times, I believed I was in the middle of a cardiac event, having a heart attack. With my cardiac history, I am surprised this is the one thing I have not dealt with yet. But as the anxiety rose, so did the psychological effects of becoming paralyzed by fear, uncontrollable and rapid breathing, and pending doom. It would take hours, and at least two of those events led to the emergency room. So, just to be clear, there are different levels of anxiety.

And finally, it is understandable and normal that the anxieties overcome us. I was one of the lucky ones in the beginning, having gone eighteen years before my body started falling apart from my treatments. And because I am more familiar with testing procedures, and yes, being able to read my reports now (I really do deserve an honorary doctorate), I am still able to maintain my composure when it comes to dealing with anxieties. But there are so many that I know, that have had their Hodgkin’s relapse, not only once, but several times. Some have gone on to have second, third and fourth cancers. Yes, the anxieties we face are normal and understandable.

I also try to keep it in perspective. And my therapist accused me of this thinking a long time ago. And if you have followed my blog long enough, you will agree with my therapist, I really do not place the level of seriousness of the things I have gone through that I should. I look at my fellow survivors, and feel that what they are going through is worse than I have faced. Many are gone now. I have survived cancer over three decades, deal with a multitude of health complications from that cancer, but I deal with what I do, because I have to. And I have a lot I want to get done yet.

Cancer Or Covid19, Which Is Actually Contagious?

The title of this post seems a little obvious. But is it? There can be no doubt, in the hundreds of millions of cases, and millions of deaths, and so many more hospitalizations, Covid19 most certainly is contagious, but over the last two years, one of the top causes of death, along with cancer, and heart disease. And that is in just two years. Yet, after over two and a half years, a leader of the free world, we have so many, who still do not believe in the severity and the challenges posed by a Covid19 diagnosis or how to prevent it. My post is not meant to be about Covid19, but rather, to compare our attitudes towards another major cause of fatalities, at one time, believed by many, to be as contagious if not more so, and actually feared probably more, cancer.

Chances are pretty good, that you would be hard pressed to find anyone who would actually believe that cancer is contagious today. But decades ago, this was not always the case. I was diagnosed in 1988, the tail end of the time period when this belief would begin to fade away. From my experience, I was isolated from my friends, not by my choice, and it was never talked about. Could they have actually believed they might “catch” my Hodgkin’s Lymphoma? Or were they simply avoiding what they felt might be the inevitable, seeing me get really sick from my treatments, or worse die and they did not want to expose themselves to that personal pain?

Of course, as a newlywed back then, my spouse (1st former spouse) had concerns about being exposed to my treatments through residue through either skin contact, breath, or bodily fluids. I know she did not want to have any of those chemical or radiation substances in her body as well. She knew the side effects that I was experiencing, and she did not want that to happen to her. I cannot say I blamed her.

But for those treated in the years and decades before me, “catching cancer” from someone else, was a real concern. And sadly, for the patient, this meant isolation and abandonment during the most difficult time in their life. Emotionally, I believe that this played a negative role in survivorship.

This is the thing that I struggle with. I have had cancer, but as of this post, not Covid19. I have never believed that cancer was contagious, but respect fully the dangers of Covid19. How could we as a society have been more fearful of “catching” something that was never contagious, and be so ignorant to the concerns and necessary precautions against something extremely contagious?

In fairness, there is a lot that we have learned about cancer, and who might be diagnosed with it. But as far as spreading from one person to another, it is not going to happen. Heredity, life choices (such as diet and smoking), environment, and yes, certain viruses (such as HPV – human papillomavirus) can lead to a diagnosis of cancer. But this is far from being contagious. Clusters of certain cancers, often related to environmental events such as Three Mile Island and the Dupont PFAS exposures, make it seem as a contagion type situation, but it is not. Even a pregnant mother with cancer, is not likely to pass her cancer on to her baby.

A main difference between cancer theories among average people in the 1950’s through the early 1990’s and today, lack of social media and the internet. We literally dealt with word of mouth, and if we were learned enough, what we were taught. There was no instantaneous correction to stopping myths from spreading.

Yet, here we are with all the technology, and with the knowledge we have of a highly transmissible virus, between the misinformation, issues with communication by the professionals (which does not mean they were wrong, just that things were learned and thus things changed), and politics, I wonder how we would have handled the myth of cancer being contagious in the 21st century.

While I am on this topic, and as I occasionally see discussed in various forums and internet pages, I would like to dispel some other myths, at least about cancer. Right now, people are too concerned with being “right” to address logic and facts when it comes to Covid19. After two and a half years, you are either following the recommendations or not, and your are accepting the consequences of those decisions or living life intelligently to not intentionally expose oneself.

So, without further ado… from the National Cancer Institute (last updated August of 2018)…

  • cancer survival rates continue to improve with many cancers now over 90% survival rate
  • sugar does not affect cancer, what it does do, while cancer cells do consume sugar, it does not have an impact on spread or growth or survival. What sugar does do, is affect other concerns of health such as diabetes and obesity
  • there is no evidence that artificial sweeteners cause cancer
  • attitude does not influence the cancer itself, but can help in allowing social structure leading to better emotional support from family and friends, and that can make a difference
  • cancer does not get worse exposed to air
  • there is no proof that cell phones cause cancer
  • electric power lines are not proven to cause cancer
  • antiperspirants are not known to cause cancer
  • there is not convincing evidence that hair dyes lead to cancer (a big topic among survivors who want to stay on top of their gray or just go for a color change)
  • alternate and complimentary therapies such as certain herbs, while helpful in dealing with side effects from treatments, do not have major scientific proof as to benefits of treating cancer. The important thing, while I personally approve of alternative and complimentary therapies, that it must be done with the blessing of the treating oncologist, because of the potential risk of any herbs interfering with the treatments. Any delay or negative impact can cause issues with the outcome of remission or worse.

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