Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “The Heart”

In Between Milestones – 35 Years, Still A Big Deal


When celebrating anniversaries, we make a big deal out of major anniversaries, such as 1st, 5th, 25th, and of course, 50th. In the world of cancer survivorship, many of my fellow survivors and I do the same thing with our anniversaries, though several of us recognize our anniversaries differently. Some will recognize the day that they are told they are in remission, and others, including myself, celebrate the day that I was done with my treatments. The photo above, was taken one year after I was done with my treatment, which means the photo was taken thirty-four years ago. That is right, today I am 35 years in remission!

I think I might actually even look younger today than I did back then.

In November of 1988, I was diagnosed with Hodgkin’s Lymphoma, back then it was called Hodgkin’s Disease. My cancer was staged at 3B, almost as bad as one can have it. I underwent some of the most toxic treatments of chemotherapy and radiation therapy to be able to hear the words “you are in remission.” And though I would get to hear “remission” half-way through my treatments, my doctor wanted me to finish the course, the entire plan of treatments, taking my last dose of medicine on March 3, 1990. That was 35 years ago!

Up to, and including the time I was diagnosed, all I ever knew about cancer, was that people died from it. There was no internet for me in 1988, so all I had to hear about cancer, came from the television news or newspapers, that people died of cancer. You never heard of people surviving cancer. And it was not good enough as a patient to hear about something called a “5-year survival rate,” in spite of this survival rate for Hodgkin’s being well into the mid-80 percentage, at the age of 23 years old, I wanted to live much longer than five years. I believed that I could, especially if the cancer was gone, but I had never heard of anyone surviving long term. At the time, my grandmother was in remission for breast cancer two years, my only reference to anyone surviving cancer. Again, no access to the internet, I had no idea of the inspiration that was out there, people living after cancer, 30, 40, 50 years and more.

But that time would come soon enough, buying my first computer, getting an AOL account, and finding a “listserve” of other Hodgkin’s survivors, some still in treatment, some finished with treatment, and here they were, some who had survived decades. I saw that long term survivorship from cancer could be mine.

There were other things that I learned as time went on, something that even science and medicine were not aware of or prepared for, if we were going to live longer than those five years, that meant that there would be a possibility that we could develop late side effects from the treatments, though what side effects were not known. This was not studied. But this community of survivors I discovered, were sharing this knowledge among each other, and where help with these effects, and doctors who have knowledge of late side effects, could be found. This would come in handy myself, because over 17 years after I finished treatments, the first late effect from my treatments was discovered, in the form of a “widow maker” blockage with my heart, caused by the high dose of radiation that I received. This would be the beginning of many issues that would be discovered over the next 18 years for me. But I want to stress two things, first, not everyone who goes through treatments develops these side effects, and second, as bad as some of these issues got, the proper intervention has given me so many more years, and I have been blessed with so many opportunities and memories.

The fascinating thing is, over 35 years, I have been witness to progress, actually getting to see it, how Hodgkin’s get diagnosed, no more destructive and invasive staging procedures. The toxic and extreme treatments that I and many others were exposed to back in the 1960’s, the 1970’s, 1980’s, and 1990’s, with medicine’s knowledge, those very treatments had a good possibility of killing us, are no longer being used. I can tell you that treatments today are just as effective, and though still not pleasant, are more tolerable and safer. I have gotten to witness this progress.

The best part of my 35 years of survivorship, has been having the opportunity of being Dad to the best daughters a Dad could ever hope for. They were not around for my battle with Hodgkin’s Lymphoma, but from the first appearance of a late side effect, they have been my motivation and inspiration to not give up. There has been so much that I have gotten to experience with my daughters, now both in college, I really did not ever think I would see this day, yet here I am.

I cannot recognize today however, without recognizing others in my Hodgkin’s family over these thirty-five years. First, all of my new Hodgkin’s friends currently going through treatment yet. I hope that whether you hear of me through “Paul’s Heart”, or have read my book, “Paul’s Heart – Life As A Dad And A 35-Year Cancer Survivor,” follow me on TikTok, YouTube, Facebook, or Instagram, I hope you being able to follow someone who has been a survivor for four decades to be inspiring to you, that you too will have a long and fruitful life ahead of you.

Then there are all of the survivors that have come into my life over all of these years. I have known many of you nearly my entire survivorship. And even more inspiring to me, is that so many of you have survived even longer than I have, forty and fifty years or more! I do not take any day that I have for granted, but seeing how far you have come, gives me hope that I can see that longevity also.

If there is one thing that remains so cruel, sadly, there are some that are not here with me to recognize this day. Some, their bodies just no longer able to take the trauma of decades of late side effects, and even one, barely getting to enjoy a few months out of treatments. I miss you all to this day. I remember you all and the joy you shared with me while we were able to survive together. I wish there was a rhyme or reason, why we do not have a 100% cure rate when we are so close right now! Though progress has been made in safer and more effective treatments, it is not good enough.

The counter on this page now is set for March 3, 2030, which will mark 40 years as a cancer survivor. That is a milestone I want to reach, and likely, with my daughters, hopefully not the only other milestones I get to witness.

Heart Awareness


February is American Heart Health Awareness month. And if you have followed my blog for any length of time, you know that I have a particular interest in this awareness. It is ironic how long I have actually been involved with cardiac awareness and advocacy, even back when I was not aware who I might end up doing it for.

The picture in the lower left corner is me, as a high school senior in November of 1982. Our school was holding its annual American Heart Association fundraiser, a jump-rope-athon, which was to comprise of teams to jump rope for a period of three hours to raise money for the AHA. The event was to be held toward the end of the school day, until one parent, that was ONE PARENT complained to the school administration being held during school hours, who then also raised concerns, leading to the cancelling of the event. That is, until I approached the organizer, and told her that I was willing to stay after school hours to complete the event on my own. I had already raised money, and I felt I needed to complete the task. I did not have any team at this point, so when cleared by the nurse, I jumped rope for three hours straight, raising money for the American Heart Association. It was a good thing I had a couple days after to recover because my legs were not happy with me the next day.

Cardiac disease does run in my family. I am at least aware of that. And it hit pretty hard one day, when my father was at work, where he had a very physcial job, and was dealing with a client, who happened to be a paramedic, at the right place, at the right time. My dad was complaining at that moment of really bad indigestion, really bad, painful. The paramedic had my dad sit, and realized he was witnessing a heart attack and immediately took action. That quick response likely saved my father’s life, which responded in a couple of stents being placed in arteries once at the hospital. More importantly, it gave my dad more time, time that he would eventually get to see that momentous time, when I myself would become a dad, twice, with his granddaughters.

I was shocked to hear that his main symptom was “indigestion.” All I had heard previously was the excrutiating pain. It was not a surprise that he could have had a heart attack between his life-long smoking habit, love of fatty and fried foods, and high stress lifestyle. But I would soon learn, there was much to realize when it came to symptoms of a heart attack, a lot of symptoms, and even some different between men and women.

Sure, a common symptom is the chest pain or tightness, a real hard pressure, or perhaps a pain radiating in the left arm. You could have pain elsewhere like in the jaw, neck or abdomen. Nausea and indigestion are also warning experienced by some having a heart attack. Sweating and dizziness can also be symptoms.

Men and women can experience any of the above symptoms of a heart attack. It seems though that there is a difference between how each handles the situation when it happens. Women are more likely to attribute these symptoms to other possible causes such fatigue, arthritis, diabetes, where men are more likely to try to just push through it, much as I did as I discussed in my story “CABG – Not Just A Green Leafy Vegetable”, the link at the top of this page.

Of course my story with heart disease is a bit more complicated and uncommon as my situation was caused by my cancer treatments for Hodgkin’s Lymphoma thirty-six years ago, resulting in a double bypass for a “widow maker” blockage in April of 2008, I was forty-two years old. And that brings me to the next part of this post.

Yesterday was Heart Valve Disease Awareness Day. It was over three years ago, that I had my third heart surgery, to replace my damaged aortic valve via TAVR (transcatheter aortic valve replacement), which as you can guess, the repair was done through my leg to my heart. While this is now a fairly common procedure with a much faster recovery time than going the old open heart, ten years ago, because of my Hodgkin’s treatment history, I would not have been an option for this.

This is a replica, actual size, of my current aortic valve. And the really cool part about this, if this needs to be replace, it is large enough, to allow a smaller one to be “dropped” inside of my current valve. Fascinating, nerdy, amazing.

Heart awareness is just that, making sure that you are aware of when things do not feel right, or you see or hear someone not feeling right. I can count, now using both hands, how many times I have picked out friends and fellow long term survivors, who ended up having a similar “widow maker” condition as me, demanding that they go to the emergency room right away, as time could make a difference. As my cardiologist told me with my original situation, “it was not a question if you were going to die, but when. And that fact that it took you four months of having symptoms to do anything about it, you are the luckiest SOB on this planet.”

I get it, no one wants to go to the Emergency Room and feel embarrassed. But the truth is, better to be told that you are okay by the doctors, or to be at the right place at the right time, getting the necessary medical treatment STAT (that’s medical lingo for NOW!).

My daughters almost lost me in 2008, they are more than aware of that. And I have lived each day after that for them. They have friends that have lost their fathers, two due to heart disease. The last thing I would ever want is for them to experience that heartache and loss themselves. And I have gotten to experience so much more in these last sixteen-plus years, and hopefully more to come.

Time Beckons


“Time, keeps flowing like a river, beckoning me.” These are lyrics from the song “Time” by the Alan Parsons Project. It was one of my favorite songs back in the early 1980’s. Now, when I hear the song, it seems to haunt me, as if forboding me.

I have started and re-started this post several times now, its prompt has rattled me which is not easy to do. But for the second time in my life, when it happens, it is a doozy.

(photo by Deadline)

Innocently enough, I sat down to watch the final season of Superman And Lois, one of my favorite versions of the Superman stories. Tyler Hoechlin was one of the better Superman/Clark Kent characters rivalling the original George Reeve (able to leap tall buildings, faster than a speeding locomotive) and his son the late Christopher Reeve. Hoechlin is one of the less cheesy portrayals, remaining just nerdy enough for Kent. Knowing this was the final season, like many of the other super hero series that I have watched that came to conclusions, I did not see this ending coming, or how it would have an impact on me.

Spoiler alert, sorry need to do it for the purposes of my post, Superman was in an epic battle with another “super man” from another universe, but through experimentation, evolved into a monstrous killing machine, able to do what kryptonite could not do, kill Superman. Once dead, that should have been the end of the series, but of course, you could not leave the storyline open of some indestructable monster left to do with the earth whatever it wanted, and that monster hardly would have made a good spin-off.

Here is when my senses perked up. Arch nemesis Lex Luthor had commanded that the monster bring back the heart of Superman, which Luthor kept in a box hidden from Superman’s son, who had hopes of returning the heart to his father, now being kept in suspension back in the fortress. Instead, as the son located the heart, he also confronted Luthor, who then destroyed the heart of Superman right in front of him. Again, with several episodes left in the season finale, I figured it could not end this way.

The monster was not done yet with his mayhem, and then killed Lois’s father, who worked for the Department Of Defense, partnering with Superman. This became an opportunity, even though from different planets, Lois’s father’s heart, would be transplanted into Superman back at the fortress.

Yep, cue my senses. Beginning to hit a little too close to home now, and it did not matter that it was Superman. Superman would recover, and as he resumed his activities, which included training his sons, who also had powers, during one exercise, flying, he grabbed at his chest, which appeared to be feeling wonky, dropped from the sky and crashed. Of course, being Superman, he could handle that. But Superman was experiencing what many of us who have gone through heart surgeries before, doing too much too soon. Evidently with a human heart, Superman was not healing as quickly as he once would have. This was not the only thing noticed.

While at the dinner table, Lois noticed something about Clark, making reference to “some peppering” on Clark’s head, another way of saying someone is turning gray. Make no mistake, there are big differences between Superman and I, but now two similarities have occured. It was the next scene that made it clear to me how the series was going to end, and that was really going to problematic for me.

Halfway through the series, when this monster came along, John Henry, also came from that same dimension, and soon began working with the Department of Defense and Superman. Seeing how Superman had been struggling, and his appearance seeming to age, Henry told Superman he wanted to run some tests, which included scans. Henry had discovered, that even though Superman was Superman, having his father-in-law’s human heart, the heart was that of a 60 year old man, and was not perfect. Superman was no longer immortal. The question was for how long. Superman would die eventually, on his own.

I enjoy my super heroes, and from both DC and Marvel. But of all, Superman was the strongest, the fastest, and really stood for all that was good. Out of those three characteristics, I shared the last one with Superman. Now however, I shared even something stronger with Superman, an imperfect heart, his by circumstance and need, mine by medicine.

In 2008, I had to have emergency open heart bypass surgery, for something nicknamed “a widow maker” blockage, a blockage of the LAD (left anterior descending artery), which is named that for a reason, a person who has this, without immediate and extreme intervention, will die. However, unlike the average person that has one of these situations, mine was not brought on by diet or lack of exercise or conditioning, but was rather a late developing and progressing side effect from radiation therapy I had undergone for Hodgkin’s Lymphoma eighteen years earlier. Within 36 hours of being discovered, at the age of 42, I was on an operating table.

Once discovered that I was having late developing side effects, and that there would likely be more, I began to see doctors who had knowledge of this kind of history. And more things would be discovered, more damage from the radiation, but also the chemotherapy. In fact, just to keep it simple with this post, more problems had been discovered with my heart, that would eventually need attention. More than a decade later, I needed another artery for my heart repaired, the other big one, the RCA (right coronary artery), and my aortic valve would also need to be replaced. I still have one more issue with my heart being watched, but now there is the matter of the status of my bypass (how long it has been and is it still holding up), as well as the stent of my RCA, and the valve. All three of these things are temporary. At some point, they will all need to be fixed “again.” But with my complicated health, and the risks of a second open heart surgery, it will be an uphill battle, the odds against me.

So now, Superman and I are even, and it is because of our hearts. And in full disclosure, at my current age, I too have my share of “peppering” in my hair covered by my length, and definitely all gray in my beard thanks to my Dad. But Superman and I, face/faced both the same fates, it is/was just a matter of time.

(photo from Instagram)

The final scene of the series, was a summary of the next thirty-two years for Clark. Lois, who had relapsed from her breast cancer had passed (her original story line was quite the contrast watching Clark be the “helpless” caregiver in spite of being Superman), their sons had both grown, stepped into their roles as “super men” while also having families of their own, and Clark got a dog, a Golden Retriever he named “Krypto.” Another similarity between Superman and I, we both love Golden Retrievers.

(photo from Screen Rant)

I could begin to feel tears behind my eyes. It is not something I am used to as I consider myself someone who does not normally show my emotions. But something like this happened to me once before, losing control of those emotions, ironically while watching another television show, a charachter undergoing open heart surgery. Though watching that, I just sat there, with the tears trickling down my face, clearly reacting to the fact that was real life for me just two weeks prior. It was too real, and definitely worse than what was being presented.

As Superman passed, we saw the collage of everyone who was so important in Superman’s life, from old friends, to his sons shown both as teens and as adults, and waiting for him outside of his “home,” was Lois, wearing a red dress that she had worn twice before, a favorite of Clark’s. I was now experiencing a full and complete breakdown. Time. Superman had thirty-two years with his father-in-law’s heart and got to experience so much. And for better or worse, he would not have to live forever with only the memories of what was, as he would have with his immortal heart once everyone would have been gone.

I was alone when this breakdown happened. And it took a long time to gather myself back together. Another thing Superman and I have/had in common, we both know/knew that time was not on our side, worse, when we least expect it. If you are reading this, and you have good or great health, I am happy for you. And I get you may not understand how powerful these thoughts are, that you cannot just “think positive” to make them not happen. Quite the contrary, the knowledge of my shortened mortality is actually quite a good thing in that I appreciate EVERY opportunity and moment that I get to experience, with a major focus being on my daughters.

Nearly seventeen years ago, I was told by my cardiologist I was “going to die, not a question ‘if’, but ‘when,'”my death imminent at that moment. This was what I nearly lost, watching my daughters grow into adults, getting to experience the many things they are buildilng their lives upon. And I am not done yet. But I am also not arrogant to think I have any control over when “time” is decided. So I do take every moment I can with my daughters, who celebrated my past birthday with me for the first time in eleven years (due to divorce and custody agreement) and presented me with two of the most heartfelt gifts.

I am not alone in this type of situation. There are many fellow long term survivors of Hodgkin’s like me who face this situation, or have faced this situation. And just as I struggled how to write this post, I find it difficult how to end it, other than to say, I plan on writing a lot more posts. I plan on more books. I am planning on continuing my advocacy for cancer patients and survivors. And I am planning on a lot more time with my daughters.

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