Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “November, 2025”

04 Nov 2025

What Does Ai Have Against Cancer Survivors?


(image courtesy of SciTechDaily)

It was a simple and innocent enough question I entered. Given my personal status, and my knowledge, I thought for sure, asking Ai would give me at least a similar or more accurate response to my question. But might I actually know more than Ai? Or might I just have the one characteristic that Ai lacks, the ability to care about the impact of the question?

“What is the average lifespan of a Hodgkin’s Lymphoma survivor?” It is a simple enough question, and if you have followed “Paul’s Heart,” you know at least one Hodgkin’s survivor of at least 35 years. And you would think medicine and other advocacy groups would have some sort of statistic to reflect others like myself, and there are plenty more, at least a thousand more that I am personally aware of.

I do not chase after this statistic constantly. The last time I looked, still the only number when it came to cancer survival rates, was still being based on a 5-year average. Sure, it gets acknowledged that survivors of Hodgkin’s Lymphoma can live longer, but there still is not any kind of verfiable or concrete information, mainly because it has never been tracked. A patient hits the five year mark post treatment, and then gets released by their oncologist, in theory, never to be heard from again, alive or deceased.

So since medicine and society do not have any solid stance on my question, I put it to Ai. The response was based on twenty-one sources, including ASCO, City Of Hope, NIH, ACS, NCI, Blood Cancer United (formerly Leukemia And Lymphoma Association), Lymphoma Research Foundation, NHS, Cleveland Clinic, and more. “While there is no single “average lifespan” for a Hodgkin’s Lymphoma survivor, most patients have an excellent prognosis, with long-term survival rates approaching those of the general population” was the answer. I guess “general population” refers to those with no history of cancer. Ai also does not seem willing to commit to any kind of number, whether it be by years of survival, or by the percentage of those having long term survival. Ai does admit to several factors influencing survival from age of the patient, stage of the cancer, and of course, treatments administered. But I already knew that.

My Ai search went on then, with the usual “survival measured in five-year and ten-year” relative survival rates (an improvement from just five-year), based on data from 2015 to 2021. Again, keep in mind, data was not kept on those of us treated in the 20th century and at least the first decade of the 21st century. Ai does admit that many live decades beyond their diagnosis, and that is because of documention by the medical community of survivors like myself, but there still are no solid numbers other than what has been documented over the last ten years. And I know there are other Hodgkin’s survivors out there in the world.

Age is recognized as one of the factors that impact survivorship. It took a long time to give myself credit for survivorship longevity as long as I have, but I am still so inspired by those in their 40, 50, and 60 years of survivorship. And if you are saying “WOW!”, you bet WOW!!!. These survivors were more likely diagnosed in their early childhood or teen years. But that does not mean that those diagnosed as adults cannot have longevity. It just means that the trauma to their body is affected differently by the already aged and susceptible issues of an older human. I was 22 years old when I was diagnosed, turning 60 at the end of this year. And I know many who were diagnosed in their 30’s and 40’s, now in their 70’s. But why isn’t this information coming up in my searches, even with the assistance of Ai?

The other major factor recognized by AI impacting survivorship, treatment complications. For those of us treated prior to the mid to late 1990’s, it was possible we were not even expected to survive the toxicity of the treatments, let alone worry about survivorship. But as medicine continued to advance and find better and somewhat safer treatments, its toxicity still exists today, however with increased survivorship numbers.

Here is the problem, and Ai does not even seem to have a grip on this situation. What happens to those survivors who develop treatment-related complications such as secondary cancers, cardiovascular disease, pulmonary disease, as well as other issues? Ai’s answer for this is less than a hundred words, lifestyle and medical surveillance. And I would bet donuts to dollars, being monitored following the five-year mark is still not mainstream advice to Hodgkin’s survivors.

Science and medicine knows this monitoring is crucial to survivorship. Well at least those that treat survivors like me, impacted by our treatments. Thirty-five years out, my treatments have had a lifetime impact on my heart, my carotid arteries, my lungs, my thyroid, my esophagus, the muscles of my upper torso, my spine, my pancreas, fertility, and of course dealing with several emotional issues, one being survivor’s guilt. So I am quite lucky, I have been monitored since 2009 following the discovery of these late effects, but still, this was thirteen years after my “five-year graduation” from cancer, unsurveilled, and clearly lucky, with the first issue I developed was caught just as I was about to have a fatal heart attack. Had I been followed up sooner, the situation would not have been as dire.

And there are many others, as I have said, at least more than a thousand that I personally know who did not have the monitoring until it was either near too late or just oncoming. So does everyone develop these issues? According to Ai and its resources, that number is “not definitively established.” And figuring this out is as difficult for humans as it is for Ai. With evolving treatments, varying studies, and longer latency periods, a bigger factor impacting this is human, and that is the ability to connect the health history of a Hodgkin’s survivor to any particular issue that has come up. But without a Hodgkin’s patient being told about later risks, and many still are not, survivors simply go on with their life, after Hodgkin’s, never giving it a second thought. And unless you are dealing with a known issue, you do not seek out that help, and that can erroneously affect statistics, diagnosis that make no sense for demographics, like when I was diagnosed with a widow maker heart blockage at the age of 42, due to my radiation treatments. Even the operating room was shocked to see someone “so young”. Medicine and science knows to look out for these things, yet it is not common recommendations to follow up lifetime with every cancer survivor for these types of issues.

And then there are those survivors who will simply bury their heads in the sand, like ostriches, ignoring the potential for problems or pretending it does not exist. After all, if you cannot see it, does it really matter? All a cancer patient wants is to live a long life after cancer, without cancer. Why doesn’t society and medicine recognize and more importantly celebrate when survivorship does happen? I am talking going beyond “ringing the bell” at the completion of treatment(which I never got to ring back in 1990 as this was not a thing back then). Our society frequently announces those who are diagnosed or battling cancer, and of course there are those that do not survive. But think about it, how many “celebrities” can you name who have survived cancer, let alone those personally in your life? Why do we not celebrate and recognize those survivors, giving inspiration to those newly diagnosed or currently in treatment, looking for support that there is so much to look forward to?

When I was diagnosed in 1988 at the age of 22, besides the chances of me beating cancer, my next question was how long I could expect to live after that? Would I live a long life? I have been writing “Paul’s Heart” nearly fifteen years, so you have seen all of my milestones and achievements so far in my survivorship. And I still have many more that I want to reach. But I am just one survivor. I love being able to share stories of other survivors and I have done this many times on this page. If you would like to share your story of survivorship, I would like to post it here, so that others could see more than just one survivor story.

Even if medicine and science never catch up, I have hopes that maybe Ai will.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart and tagged , , , | Leave a comment
03 Nov 2025

If You Could Really See It


This is an actual picture of my current handicap placard. Looks in pretty bad shape, doesn’t it? I have had this one just a little over two and a half years, with a year and a half to go. I have my personal identifications blocked out, but the things that should stand out to you, are the number of cracks this placard has (there is actually another located above the white portion holding the card to my rear view mirror), and the amount of tape I have used to hold this thing together.

Being someone who loves music, I often try to to quote some sort of lyric to connect my posts, but all I can really come up with, is the nursery rhyme, Humpty Dumpty. Now that I think of it, this might actually work.

Humpty Dumpty sat on a wall.

I completed 8 cycles of chemotherapy and 30 treatments of radiation therapy for Hodgkin’s Lymphoma back in 1988-1990. Got to remission, and was living life.

Humpty Dumpty had a great fall.

I was only watched by my oncologist for a possible relapse for five years. At that point, I was considered “cured” or likely free of it coming back, and nothing to worry about. But unbeknownst to my doctors (I was not being followed up anymore), my body was developing late side effects related to both of my treatments. The first of many issues, was discovered in a big way, a “widow maker” heart blockage of one of the main arteries of my heart, appropriately called that, because normally, someone does not survive that condition. Imagine if you will, Humpty Dumpty not only scrambled from his fall, but cooked in the sun on the pavement below.

All the king’s horses and all the king’s men,

An emergency double bypass for that main artery to my heart, the left anterior descending artery, literally saved my life. Comparing my life to Humpty Dumpty’s life, that heart crisis was just one piece of broken “shell” that would be discovered over the years. I have had two additional heart surgeries, I have several other conditions with my heart, a pending lung cancer diagnosis, I have a pre-cancerous condition with my esophagus and my thyroid, my carotid artery has been repaired, and the list goes on and on and on, literally. Take another look at my handicap placard. Then look at my recent photo. Of course, the main difference, you can see the horrible condition of my placard, but not what I am dealing with in regard to my health.

My “shell” looks pretty good (as far as health goes), as good as when Humpty Dumpty when he was still sitting on the wall. So you can guess, when I have to use my handicap placard in certain parking situations, and it is really not often but not without reason, I get stares, glares, and often times some pretty rude comments. My reactions or responses depend on my mood, or physically, how I am feeling at that moment. And if I am not feeling well, I am likely to respond quite negatively. Though I realize my outer appearance, “my shell” does not show my handicaps and disabilities, those unable to mind their own business or those who feel or suffer vigilantitis will bear the full brunt of my frustrations. Sure, “how could they know?” Of course, but it is also none of their business.

I have nearly a dozen doctors involved with my survivorship care from the late effects of my treatments: cardiology, pulmonology, cardiovascular, endocrinology, gastroenterology, physiatry, and many more including a primary care and a coordinator of my late side effects. This “Humpty Dumpty” has quite a few King’s men. If I were to walk around with all of my health issues on the outside, where everyone could see them, I would resemble my handicap placard. And then, you would be able to accept what I deal with. But then you would have to accept the burden that only I carry, the feelings of “that sucks” or “I would hate to have to go through all that” or anything else that may interrupt the good life you may be able to enjoy. So, I give everyone a smile when they see me, if you will, the tape that holds my placard together, you just won’t see the cracks. That keeps you safe, untraumatized.

Couldn’t put Humpty together again.

My doctors cannot stop what is happening. They cannot reverse anything that is happening. But what my doctors are able to do, is deal with each issue as it is discovered and repair what they can. I am enjoying a lot longer than I expected I would when I was told I had Hodgkin’s Lymphoma, cancer, and definitely more time than Humpty got with his four line story.

“But Paul, why not just get a new placard since that one is in such bad shape?” you might be asking. And a reasonable question, a simple question. I wish it was that simple. But just as it is with my body, the best I can do is get a replacement, however it will still have the same expiration date, and inconvenient paperwork still needs to be filled out. I wish my health were as simple as just “replacing” things. Unfortunately, there are so many extra risks associated with any corrective actions than if they were done to normally healthy people. And sometimes those risks are too risky to take.

So yes, I try to take the compliments “you look great!” and such, but it is hard because inside, my body could not feel further from it. If we are spending time with each other, family or friend, I do all that I can to not show you, or let you know, I am not okay. It is not how I want to be remembered. But… next time you see someone taking a handicap parking spot, climbing down from a monster-truck, thinking “that person can’t possibly be handicapped,” first, you have no idea what is under that person’s shell and the most likely legitimate reason they are parking in that space, and second, it’s none of your business. I do not get any satisfaction out of letting anyone know that if and when I get confronted. But if you want to make it your business with me, I will unload everything on you that I carry so that you can know the mess that laid at the bottom of the wall where Humpty landed.

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01 Nov 2025

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.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart and tagged , , , | Leave a comment

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