Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Recreation”

30 Jun 2023

A Scary Story


Back when I was a young kid, I remember being scolded by my Grandmother, “don’t sit so close to the television! You’ll ruin your eyes.” That was the simplest way to warn a kid. However, my Grandmother had a bigger fear, and just did not want to scare me, radiation emitting from the television. If she only knew, proximity to the television was the least of my worries when it came to radiation.

So yesterday, I wrote a story about the latest issue to reveal itself to me, related to late developing side effects from my treatments for Hodgkin’s Lymphoma over three decades ago, osteopenia, a loss of bone density. Both radiation and chemotherapy are the culprits behind this diagnosis. And last week, my confirmed first injury related to that condition, a cracked rib.

But this post is not about osteopenia or my cracked rib. And I am going to try to avoid getting too nerdy or lost in the weeds with an explanation. This post is going to be about understanding, as easy as I can possibly make it.

First, likely all of us have been exposed to a minimal amount of radiation at one time or another, probably at the least, during a dental visit, having x-rays taken of the teeth. It is a tiny amount of radiation and does not last long inside your body at all. The actual time that it takes for dental x-ray radiation to leave your body is referred to as “half-life”, is so minimal, it is not even referred to as “half-life.” But when you are referring to the amount of radiation a person is exposed to either in a work environment or as a patient, “half-life” depends on the isotope and the exposure/dose.

There are a lot of different terms used to describe the exposure to radiation such as: sieverts, mrem, and grays. If I understand correctly, sieverts and mrem refer to the actual dose, while gray refers to the “absorbed” dose. Again, if I understand correctly, both end up meaning the same exposure. OSHA, the Occupational Safety and Health Administration, puts the annual dose limit exposure to radiation at 5,000 mrems. Just because I happen to be more familiar with the measurements in “grays,” that equates to .05 grays per year. The lifetime limit per the NIH, the National Institute of Health, is 400 mSv, or 40,000 Mrem, or .4 grays. Again these are lifetime numbers. Now hang on to your socks.

In February of 1989, I was treated with 4 grays (also described as 4,000 rads) of ionized radiation, or 400,000 Mrem, or 4,000 mSv. You do not need to be a scientist or math genius to know, the amount of radiation that I was exposed to, and similarly many other Hodgkin’s survivors from that time and beyond, was not safe. It was considered experimental, and it worked. The question is, at what cost?

Up until last week, bone density was the least of my worries, but with a simple cracked rib, the condition of my spine, and my susceptibility to an increased risk of fractures needs to be kept in mind now. The increased time for a broken bone to heal, or increased risk of bleeding to death (especially during surgery) are quite extreme. Combine this issue with my cardiac (3 heart surgeries and a carotid repair), pulmonary (pre-cancerous spots on both lungs and other issues), endocrine, musculoskeletal, and gastrointestinal systems, radiation may have saved my life from cancer, but the cure might just have been worse.

Which brings me back to the topic of “half-life.” Each year, my department at work was required to hold a “radiation safety training” session. To the average co-worker, this was as entertaining as watching paint dry. But for me, a fan of the Incredible Hulk, and carrying likely as much radiation as the Hulk, I was one of the few paying attention, for the question and answer portion at the end that is.

Part twisted sense of humor, and part hope for cure, I asked the same question, which I was able to do every year, because there was a different instructor. Every year, I would ask the same question.

“What is the half-life of 4 grays of ionized radiation?” It was a simple enough question, short, direct, to the point, simple math. But I knew the reaction, and the conversation that would follow.

Instructor: That’s impossible.

Me: Yes, I know (I said with a straight face, knowing what I was going to do to him). But what if it did happen? What would be the half-life?

Instructor: That’s impossible, no one would ever be subjected to that exposure. They would never lose that contamination.

Me: Well, I was exposed to that, back in 1989, treated for Hodgkin’s Lymphoma.

I had seen the look on his face before, disbelief. It was not that he did not believe me. He just could not believe that it had been done to me. I actually know several people who work with the Nuclear Radiation Commission, and one of them actually broke down in tears, because even their employees are not to be exposed to high levels of radiation.

Instructor: (in a shaken voice) You’ll never get rid of it in your lifetime.

Translation? Radiation will continue to wreak havoc on me for the rest of my life, even when it comes to repairs already done. This is why many of my survivors and I, call radiation, “the gift that keeps on giving.” It gave us remission, but it keeps giving us more than we asked for.

The truth is, there are many like me. At least until the turn of the century, this level of radiation was still being used. Many of my “older” or longer survivors, were exposed to even more radiation than I was, leaving most of us with some sort of late effect(s) to deal with. We may not interfere with television signals or be able to cook foods holding them in our hands, or in my case, possess the strength of the Hulk, but the truth is, there are many issues, some quite severe underneath our “shells.” I have written often about the issues with my heart from radiation damage.

There are now better treatment plans as far as radiation is concerned. Medicine learned they can do more with less. There are better protections such as face or body shields (as pictured), and doctors are now able to beam the radiation directly to the tumor, sparing surrounding areas, known as “scattered field” (this is why us long termers have so many issues).

This conversation is indeed quite scary. But it is a conversation that awareness is needed. If all goes as planned, remission will get reached, but surveillance once completed is critical to catch anything that develops sooner than later.

Posted in Cancer, Education, Family and Friends, Inspired By..., Recreation, Side Effects, The Heart | Leave a comment
28 Jun 2023

When Art Imitates Life


Though a fan of Jason Sudeikis, I was definitely a late-comer to his Apple TV show, “Ted Lasso.” I would describe it as a “dramedy,” a comedic drama, with the main character making obscure 1980’s and 1990’s references when dealing with the serious issues of mental health. I have watched the series twice now, and could probably watch it again, still learning things that I had missed the first two times watching it. For instance, you may not be aware that the books that Coach Beard is reading, make reference to the subject of that episode.

Lasso could be described as simplistic, optimistic, with a touch of “redneck Confucius.” Crossroads faced, odds overcome, and personality battles occur at a furious pace with the viewers likely thinking a different obvious solution, which after addressed by Lasso, leave us thinking, we might just be wrong in our thinking.

There are situations that I will remember from the first two seasons, one deals with a decision by the character Keeley Jones, who is given an opportunity to run her own public relations firm. The conflict for Jones, is that means she has to give notice to her boss, who just happens to be her best friend. Stressed by not wanting to disappoint her “boss,” she is given the advice, “a good mentor hopes you move on. A great mentor knows you will move on.” This is such a great quote that I have repeatedly shared with my daughters frequently, so that when the time comes, they should accept with pride, advancements in their careers that I know they will work hard for.

Another moment comes between Lasso and the soccer team’s shrink. The coach himself had begun seeing her for his own issues. Just as he had begun realizing the many things that weigh him down emotionally, the doctor informs him that she is moving on to another team. Lasso wants to organize a “going away” party and gift, but she pulls the rug from under him by leaving early, leaving him quite upset.

He finally finds the doctor and admonishes her for leaving him behind. He felt she was finally helping him, and now she was leaving him. As it turns out, just like his father, just like his wife. Don’t worry, I won’t spoil what happened with them. The point is, he struggled with what he considered abandonment. Was it these issues that made Ted Lasso tick and hence gave him the mechanism to react with bumpkin-level stories and advice? Maybe.

Lasso brings mental health front and center in this series. And for the most part, like many, he keeps his own issues to himself, a.k.a. private. But an incident occurs, and with him being a public figure, Lasso’s own mental health comes front and center, and for the most part, still manages to keep it under wraps. Lasso ends up betrayed, and that issue becomes public, and Lasso faces something just as difficult to deal with as the issue itself. As a leader of his soccer team, and surrounded by friends, he kept a secret from all of them. And all was discovered by them, from an outside source, not Lasso himself. While some may not have been bothered by it, some did feel upset that Lasso did not feel that he could confide in them for support. And that really is a big deal, whether a friend or relative.

I occasionally find myself being ridiculed about the disregard for my privacy, whether it be “Paul’s Heart” or social media. But I have reasons for being the way that I am. Not only do I benefit from those around me knowing what I am going through, all know that they are hearing straight from the source, commonly known as “controlling the narrative.” There is also another reason I do what I do. Whether it is cancer, adoption, or divorce/custody, and I know the struggles of all of these issues, if my story can help even just one person, then me exposing my privacy was worth it. I will never discover a cure or invent anything. But if this is how I can make a difference, then this is how I will do it.

Perhaps the greatest scene of the whole series, Lasso invokes a quote from poet Walt Wittman. “Be curious, not judgmental.” Memories of being picked on by others, he noted, were never curious about him. Had these others known anything about him, they might feel differently if they chose to get to know him. Instead they chose to just make assumptions about him and others. And because people make these assumptions, it leads to those people underestimating their target. Because all they had to do is ask him questions, be curious, and they would have discovered they might want to reconsider their behavior. “Be curious, not judgmental.” So many in my life could have learned that lesson, even some close to me. Because in the end, here I stand. And so did Lasso.

Truth is, there is likely something in the show Ted Lasso that many of us can relate to on a personal level. And when we see the results, as simple as they may be, the answers might just be what we were looking for.

Posted in Education, Family and Friends, Inspired By..., Recreation | Leave a comment
27 Jun 2023

I’m Going To Touch The Cup


There is a tradition in sports, not touching the championship trophy until the end of the championship round is complete. Many believe you jinx the team by even taking a picture of yourself (or worse one of the actual players taking a photo with the trophy), before the first game of the series has begun. Victorious players will do anything they want with the trophy from drinking champagne from it, to placing their infant child inside, to travelling the world, after they have won. But no photos before. Well, I am about to do something equivalent, but as I do, I am going to rush over to the nearest piece of wood, and give it a good ol’ knock.

I have managed to live in a world with Covid, without getting Covid. Excuse me while I quickly run to knock on wood. I am one of less than a handful of people I personally know who have still not contracted it, sadly more than three times the people I personally know who died from it, including my younger sibling.

Unlike some who actually go as far as to brag about how many times, or strains that they have been infected by, I do not consider my statement bragging at all. It made me feel very uncomfortable to hear so many exercise bravado, no fear of Covid, a disease that killed millions. I have never heard one cancer patient ever take that kind of stance.

I want to be clear. I am in no way ridiculing or mocking anyone who contracted Covid whether at the beginning of the pandemic, or even recently, whether it was not of their own doing (someone selfishly exposing them to it), or what was called “Covid fatigue,” (“I need to do this one thing.”), or first responders and medical personnel who had no choice, because of the careers they chose to get into.

But I will continue to express my frustrations with those who chose to argue conspiracy over common sense, political grievance over professional medical advice, fake patriotism over empathy, denial over acceptance and action.

Oddly enough, the group of people I personally knew, at the highest level of risk, fellow long term cancer survivors, actually fared very well, long before there were vaccines and treatments, and through supply shortages. As survivors of cancer, many of us are more in tuned with the risks we face, and react when something does not feel right. Knowing how dangerous this situation was to us, caused us to act more swiftly. As I said however, too many could not outrun Covid, either because it was brought to them, or for just one moment, a sense of false security or not, guard was let down. To be honest, I really do not believe I will be able to outrun Covid forever, anymore than I can outrun a common cold or the flu, something that I typically do not have to face, unless it is brought to me.

But as this crisis devastated the world, like spilling grape juice on a white carpet, I was not interested in “why” it happened or blame who spilled it. It just needed to be dealt with quickly, before the stain got too great. The problem was too many people were more interested in blame or accusations, instead of listening to voices of reason. And as one who has avoided Covid thus far (there I go to knock on some more wood), and to be clear, I am speaking only in my case, not for anyone else who has avoided Covid yet, or had minimal number of infections, only in my case, I am saying, the ones I relied on for the advice to protect myself, were the ones who got me to this point.

I mentioned risks. Was I in fear? Absolutely. I was a 33 year cancer survivor with a compromised immune system, and major cardiac and pulmonary issues. But did I live my life in fear these last four years? No. Did I lose anything by following the recommendations? No. With all the health issues against me, was I able to reach long term goals that I was hoping to live to see? Yes.

Did I avoid risks? No, I managed them. I weighed them. I decided which risks were worth taking, and which ones I would tempt fate. My doctors knew/know, a Covid infection would kill me (at least prior to vaccines and treatment availabilities). Yet, on three separate occasions, I underwent three major operations, two for my heart, and one for my carotid artery, in the belly of a beast (in a hospital that is), engulfed and drowning in Covid infections, along with the multiple follow up appointments. But the preventative guidelines in place, protected me, and they worked.

Some may have been cheering for me to not have visits with my daughters during Covid, whether I travelled to them, or they came to me. Believe it or not, Covid gave me opportunities to actually see them more often than I otherwise would have. And at no time, did I or my daughters contract Covid. All because we followed the recommendations.

I went to the grocery store and pharmacy. I supported local eateries, admittedly doing take out. I have to admit, I have not had interest in dining in, not because of current Covid conditions and infection rates, but rather learning how deficient many places were with cleaning (as we saw busing and table cleaning increase during the early stages of Covid, now tables and cleaning returning back to the regular unsavory conditions, under the guise of insufficient staffing… that is what really skeeves me out more than the Covid risk at this point).

I travelled with my daughters, and we did it following the recommendations. And it worked. I was more concerned with my goals that were ahead of me, than I was fighting over a president, any inefficiencies in preparations or assistance, claims of loss of freedom. I trusted my doctors and I cared about others. That was important to me. So what were my goals?

Before the pandemic, I had a list of long term goals, difficult as they were expected to reach given my health issues, that I wanted to see. The closest at the time, were seeing my daughters turn 18, and graduating high school. The last thing that I wanted was to be taken out by a disease named after a bad beer (apologies to those who actually like Corona, but I do not care for it).

There are three graduation photos. The first two were for my older daughter, because she had two different graduations, and one of those was held indoors, during a new wave of localized infections last year. The auditorium was packed with several thousand, barely anyone masked, except for me and a handful of others. Again, just like the surgeries, this was one risk I felt I needed to take. Of course Covid was still around a few weeks ago as my younger daughter graduated, but those graduations were held outdoors.

There is a huge difference between trying to prove a point, and making the decision when a risk was worth it. I have zero regrets about my decisions, and as I continue to wear a mask indoors, if that triggers anyone, tough shit. I recently witnessed a bank teller being harassed as she chose to continue to wear a mask. I do not know why she does, it is none of my business. But I respect her choice. As I wrote recently, my daughter works with a co-worker who is battling cancer, and chooses to wear a mask to protect her co-worker, as her co-worker wears a mask also.

Like everyone else, we are all tired of Covid. We had limited time and efforts to eliminate it, but too many chose to either deny it or efforts to curtail it, so now we will deal with it forever. It is now clearly about individuals choosing to do the right thing for themselves, and hope that thoughtfulness and empathy will some day prevail. Though my list of long term goals has shortened, my next milestone is three years away, a college graduation. I know what has gotten me to this point, and as they say, “if it ain’t broke, don’t fix it.” I did not think I would set foot into a movie theater again, but I had a gift certificate to use. Pretty sure my concert days are over since ticket prices are now in the range from car payments to mortgage payments. The point is, I am doing what I want and am able to do. Just to make sure, I am going to knock on wood once more. You all be safe too.

Posted in Adoption, Bullying, Cancer, Education, Family and Friends, Inspired By..., Politics, Recreation, Side Effects, The Heart | Leave a comment

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