Paul's Heart

Life As A Dad, And A Survivor

29 Jun 2023

Snap, Crackle, Oh Sh**!


It took long enough. It has been fifteen years, since I found out, one of my late developing side effects from radiation and chemo treatments for Hodgkin’s Lymphoma, would result in an increased risk for a particular event, in the case for this post, risk of a bone fracture. Radiation history is actually a double whammy as it impacts the healing of such an injury. For instance, when my chest was cracked open to perform the emergency heart surgery on me (for one of my other late effects), normal heal time for the breast bone I was told, would be about three months. Because of my radiation exposure, I was told to expect six months for my sternum to heal properly, not something my employer wanted to hear for sure.

Some time after my heart surgery, as evaluation after evaluation was performed on various systems of my body to determine late effect concerns, included a DEXA scan, a measurement for bone density and bone loss, one of the potential late side effects from both radiation and chemotherapies. Without getting lost in the weeds, results would diagnose me with osteopenia, simply, the little sister to osteoporosis. Osteopenia is a lowered bone density, where as osteoporosis is a full blown disorder. Osteoporosis is commonly thought of a something only women have to deal with. But just as with breast cancer, especially with late term side effects from treatments, osteo can impact men as well.

An MRI would confirm the effects of osteopenia, with the L1-L5 vertebrae showing facet joint arthritis, a wear-and-tear of those vertebrae, this was a late effect I would be dealing with. The most concerning comments made on the report, was the potential for an increased risk of bone fractures. I do not think of myself as clumsy, and following my heart surgery, and the reduction of my physical activity, especially anything with a risk of injury, was not really a concern to occur imminently.

And then last week…

I was sitting in my chair, reviewing some paperwork for college with one of my daughters, when I dropped my pen on the floor. I leaned over the arm of the chair to reach for the pen. I felt it. I heard it. If you have ever snapped a pencil between your fingers, that is exactly the sound, exactly the feel, that I experienced. I had cracked one of my ribs and instantly leaned back in my seat to relieve what I was hoping was just a cramp, soon realizing it was much more serious than that. One thing was certain, I knew what had just happened. This was not a simple crack like made with the knees when standing, or stretching the back, or cracking the knuckles. This was bad.

As I am prone to do, I process any crisis or trauma rationally. I do not understand how I can do this, I just do. But I reached out to my doctor, and the first concern is whether or not to do an x-ray to confirm it. With the amount of radiation that I was exposed to during my cancer treatments, he is always reluctant to expose me to any more radiation than necessary. To keep things in perspective without getting all nerdy, here is how this plays out for me. My medical history shows that I was exposed to 4,000 grays of ionized radiation in a period of 30 days. The maximum amount per year a person in the industrialized arena (a.k.a. work), is .05 grays per year. So, you can see the shit load of radiation I was exposed to, not just in one year, but covering so many lifetimes of exposure.

There are exceptions as to when I do not question exposure to more rads, and that is the concern that exists for lung cancer, as I have multiple spots on my lungs likely from my treatments. It is urgent that the moment any of these spots gain additional concern, response is quick before too late to do anything, and that requires a CT scan to do it, more radiation.

But in this case, while an x-ray will officially diagnose my rib being cracked, treatment for my rib, will just be care and rest. Therefore, both my doctor and I agreed, additional radiation from an x-ray was of no benefit to an increased shot of radiation. The important thing with this injury, my breathing was not impacted, so I was not worried about any injury to the lung. All I can do in the meantime, is “exercise” my lungs, to keep my rib cage expandable, which I do using a spirometer or singing around the house, anything to expand my lungs.

Of all the trauma my body has gone through, this is clearly one of the most frustrating, because I want to continue my “fitness” routine that I have been doing since my last heart surgery. My arms are fine. My legs are fine. But my rib is saying “hold my beer.” So, still no exercising.

One thing is certain, if I am that fragile now, that the simple act of leaning over something can cause a bone injury, clearly I need to be careful with any kind of fall, as already noted with the vertebrae in my back, my body is already compromised.

Posted in Cancer, Education, Family and Friends, Inspired By..., 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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