Paul's Heart

Life As A Dad, And A Survivor

Lung Cancer Awareness Month


November is Lung Cancer Awareness Month.

Waaaaaaay back when I was a pre-teenager in school, during “health class,” every year our teachers would teach us about the dangers of smoking, from emphazema to lung cancer. Heck, they even had a visual display of a blackened, diseased lung to hammer the point. Of course, we would go home and tell our parents that their smoking was bad for them. My parent’s response? “Won’t happen to me.”

Well, guess what. It did happen to my Father. Upon being given the diagnosis of lung cancer, his response to the oncologist’s news was, “so tell me Doc, what do you think caused this?” And my Father said it with a straight face! I jumped in, “Dad, you did not just ask him that question when you have been smoking since you were a teenager!” My Father responded, “I know. I was just hoping it could have been something else.” And it quite possibly could have been something else, though the odds of it being the cancer sticks were more likely.

And just as there are different types of Hodgkin’s Lymphoma as I was diagnosed with, and just as with different types of breast cancers (October being Breast Cancer Awareness Month), lung cancer is no different. I should know. It is all but official, pending a biopsy (or worse), I am likely to be diagnosed with lung cancer in the not so distant future.

Of the two treatment options I received for my Hodgkin’s back in 1988 and 1989, chemotherapy and radiation, back then, I was warned of the possibility of a secondary cancer, though it was thought to be in the way of a leukemia or something. In 2008, as I was being prepped for an emergency bypass due to progressive damage to my heart from that same radiation therapy’s late developing side effect, a small unidentified spot was discovered on my lung. At that time, it was of no concern, the doctor would just follow up on it for any growth. A few years later, not only had that spot grown every so slightly, there were a couple more that had been discovered. A CT scan would give only a slight more detail, but still unidentfied.

CT scans would become part of my annual surveillance and that one spot, now identified as a nodule was still growing, slowly, and a few more spots had popped up, and one of the other previous spots was now growing. Then it happened. A few years ago, that initial nodule, had grown enough, able to discern its characteristics better, now carried the comment, “presents as a possible indolent adenocarcinoma.” There it was, carcinoma, also known as cancer. I had to look up the word indolent, which means “slow growing, not producing any symptoms.” It was hard to believe, but my doctor still was not concerned at this point. A few questions later, I would understand as it was explained, many of those diagnosed with this type of cancer, often die of natural causes before this cancer becomes an issue. In other words, I would just live with this cancer, if it was cancer. We still have not made it official.

Until two years ago. The latest CT scan report changed from possible to “likely” as the nodule had grown some more, and at a slightly quicker pace. A referral to a pulmonologist had me being told I had two options, neither I would be thrilled with. He could do a needle biopsy but there risked a collapsing of my lung. And given my health history, I did not need to be taking any unnecessary risks. The other option, was to perform a “wedge” surgery, removing the portion of the lung with the nodule, and enough of the area around for any peripheral cells, but again, I have a higher risk with any surgeries, especially within the chest cavity.

My Father passed from lung cancer. He was staged at 1, but somehow following the surgery, which supposedly got everything, he underwent chemotherapy and radiation as preventative therapies, and ended up terminal. Anxiety and panic had now entered my head. My doctor had arranged for a second opinion with someone experienced with my type of health history. She had a totally different demeanor, and a much calmer direction. Together, we agreed that there would have to be a limit, a “line in the sand,” how much this nodule would be allowed to grow. There was no discussion on the other nodules and spots, but I am sure that those will eventually be included in any plan when the time comes. By my calculations, I have about three and a half years and a decision will need to be made then. Both the doctor and I are in agreement with this. And honestly, with all the issues I deal with related to my late side effects from my cancer treatments, a lot can happen in that time.

In the mean time, I continue on in life, living life, reaching for more milestones. I do not let these medical issues prevent me from my experiences. But at least with the awareness, I can have a plan. I can have hope. I can have time.

The Photograph


(top photo is mine, bottom photo is also mine courtesy of CHATGPT)

I swore I would not do it. I considered messing around with AI the equivalent to screwing around with a Ouija board. And yet, I did it. A recent diagnosis, yet another thing my body is betraying me with, put my mindset into a rare status yesterday, a feeling of worthlessness, something I do not let myself go to that place. If I am being honest, this new diagnosis does not change anything for me, well, with the exception of yet another medication I need to take. But the diagnosis was yet another reminder, not that I needed any, of what my body went through nearly 37 years ago, and because of that, must deal with the late effects today.

Myocardial ischemia, simply put, the lower chambers of my heart are not receiving enough oxygenated blood. It is a condition that is not cureable, but can be managed to a degree. This is now the eigth issue diagnosed with my heart since I was treated with high dose radiation (40gy) and MOPP-ABV chemotherapy for my Hodgkin’s Lymphoma back in 1988. In fact, I have now begun to nickname my heart “Timex,” after the advertising campaign decades ago, about Times watches “take a licking and keep on ticking.”

The status with my heart, is congestive heart failure. That was jarring the first time I saw those words in my chart. And it took a few moments for my brain to reset, CHF does not mean anything is imminent, just that my heart is working a lot harder than it should. I have now had a double bypass of the Left Anterior Descending artery (LAD), a main artery of the heart, a stent of the Right Coronary Artery (RCA), the other main artery of the heart, aortic valve replacement, a left bundle branch block (an electrical issue with the heart), an inverted T-wave, reversed septal wall motion, potential issues with my mitral valve, and now myocardial ischemia. And just for shits and giggles, I have a very pronounced murmur, which gets a lot of attention, and audience who wants to hear what a clear murmur sounds like. Yes, my heart is taking a beating. And whether by surgical intervention or medicinal maintenance, the things that have been done are not permanent, some will need to be redone again (my bypass, my stent, and my valve), and some will finally require intervention, again, none of these are permanent solutions. There is really only one option, one that I do not have, and due to the complications with the rest of my body, combined with the overall risks of another open heart surgery, the odds of me getting, or surviving a heart transplant are not favorable at all.

So, I need to do what I can, with what I know and am aware of, be kinder to my body. Unlike past situations, I am actually aware of the symptoms I am living with, shortness of breath (SOB), fluid retention, and a few others, all symptoms related to my CHF and current diagnosis of Myocardial Ischemia. I have a higher risk of having a heart attack, one thing I have yet to experience with all of my medical issues, and knock on wood, do not want to experience. Along with modifying my diet, best I can, and with mild exercise (limited to periods of walking), and medicine, there are other things I try to do to help my heart out, such as keeping my legs elevated to reduce the swelling. I live in Florida, so wearing compression socks is not an option for me.

And then yesterday, my meltdown. For the first time, these words have ever left my lips, “I am feeling worthless,” as I made a choice to allow my legs a break instead of taking on a task immediately, also focusing on not approaching stressing my heart to the level of a heart attack. Everything that I have been through, especially the last seventeen years of my survivorship, even being branded with the label “disabled,” I have never allowed myself to feel useless or worthless.

The thing is, I know I am stronger than that mentally. And that is what prompted my dance with AI. I asked to create a personna or spirit, from my image, of someone who has faced multiple challenges in life, health and otherwise. Because all of these years, I have had something in me, that has gotten me through everything. I wanted to see what “it” looked like.

I will not name it, but this is what the “fighter” in me looks like. And I can actually see it in me, and understand why I fight so hard. As I approach a major milestone toward the end of the year, and have other important milestones within reach, I am going to trust this “inner spirit” of me to keep on fighting. He looks like he can still do it. Being a big believer in “Positive Imaging” (thank you Norman Vincent Peale), this newest diagnosis is just something else for me to deal with.

Happy TAVRsary To Me


The above photo is a replica of an artificial tissue aortic valve, and yes, actual size. The real valve, similar to which is pictured and actual size, is in my heart, officially four years today. This was third heart operation I have had (2nd in two years of each other) as a direct result of late side effects caused from my radiation and chemotherapy treatments for Hodgkin’s Lymphoma.

So by the numbers, I am in remission from my cancer now over thirty-five years. I had my first and only open heart surgery (and I am wording it that way on purpose) seventeen years ago to perform an emergency double bypass as I was dying from a “widow maker” level blockage of the left anterior descending artery (LAD), caused by my treatments nearly two decades earlier.

The number of years is important, 35 years in remission from cancer, 17 years since that open heart surgery, because over all of those years, I have lived to see progress in both cancer and heart disease in newer technologies, newer methods, better options to what otherwise would not have been available for me to have received that artificial valve.

You see, just a decade ago, this type of procedure was not an option for cancer survivors like me due to the conditions of our bodies from radiation scarring inside our chest cavities. And while this valve is only an option for the aortic valve, an option for the mitral valve (something I will need done in the future) is currently in clinical trials, as well as the other valves are being studied. If I were to need any of those other valves currently, I would need to have a second open heart surgery, which will not happen, at least by my decision.

Initially I was treated with 4000 rads of ionized radiation for my Hodgkin’s Lymphoma, a common amount back in the 1980’s. However at the time, I was never told the potential issues that could be ahead of me. Fortunately for newer patients today, they do not get treated with this level of radiation. Anyone who works in the nuclear industry or radiation will confirm, this is an ungodly level of exposure, way more than anyone should see in a lifetime, let alone thirty days.

Besides the risks of the development of issues, the risks of complications rise as well from performing any interventions. Surgeons have no idea what they are going to see upon opening up the chest cavity with those of us with our type of treatment history, damage and scarring over the years, and this will also possibly complicate any recovery. Having to crack the breast bone to perform my bypass, extra time would be needed to heal the breast bone due to the radiation history. Instead of three months for recover, I would be given six months. But perhaps the biggest risk explained to me, long before the breast bone healing, is the increased risk of bleeding out. I was unaware of this the first time I was cut open, but now that I am aware of this risk, have made a firm decision in the event of ever needing a second attempt at open heart surgery.

This is why research is so important, to find less toxic, less destructive, less invasive, safer ways to save a life. Had I needed my aortic valve replaced ten years ago, it would have meant another open heart surgery, and I do not know if I would be writing this. But progress, and finding the right cardiologist with this experience, I not only survived this surgery called “transcatheterization,” my recovery was literally less than a week, I was up and walking freely within less than 24 hours.

These fixes to my heart, and I still have three uncorrected issues, are not permanent fixes. There will come a time that they all will need to be done again, my bypass now seventeen years old, a stent placed in 2019, and this valve done in 2021. Heart studies show all are holding their own or minimum progression which means these repairs are likely a ways off yet. It is my hope that by the time that any or all three of the issues come up, science comes up with better options than what is available now.

Until then, I am just continuing to look forward to hopefully the many more milestones ahead of me, now witnessing the milestones of both my daughters. This is what drives my survivorship.

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