Paul's Heart

Life As A Dad, And A Survivor

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We All Deserve Affordable Health Care


(photo courtesy of HBS Online – Harvard Business School)

Let’s make sure to get the obvious out of the way. My health history serves as a great example for the importance of health care. I am a 37-year survivor of Hodgkin’s Lymphoma, cancer, and as a result of my treatments nearly forty years ago, I deal with a multitude of late side effects, all requiring medical attention. I probably pay more attention to health care news than many for this reason. I understand health care news than many for this reason. I know the importance of accessability for all to have health care for this reason.

Historically, I recall a time, watching my mother pay cash for a doctor appointment, a low flat fee, no need for insurance. In my twenties, when I got diagnosed with my cancer I learned of the necessity of health care. And because of the inadequacy of the coverage that I had through my employer to deal with my cancer, my employer advocated for much better coverage, allowing me to recieve the treatment that has given me my long term survivorship.

Following a change of employment, I lost that health insurance completely, and was unable to get any other health insurance due to my history of cancer, a blatant act of discrimination due to this pre-existing condition, which our country allowed at the time. But that was okay for me, right? I was in remission, done with my treatments, back to being a healthy person again, no need to worry, right? RIGHT????

In 1997, a new employment opportunity came up for me, and it was going to grant me health insurance, because I was being hired into a union, which meant I had to be covered. And it was a good thing too, because eleven years later, a new direction in my cancer survivorship would take a hard turn, requiring emergency heart surgery (you can read about it “CABG – Not Just A Green Leafy Vegetable). This surgery and hospital stay back in 2008 cost nearly $300,000 which fortunately was covered by insurance. This was the first of many, and continue to this day, many more health issues that I deal with as a long term cancer survivor. It is a fair statement to say, I understand health care, and health insurance real well.

But health care, AND health insurance (meant to help with health care costs) are very expensive, like a runaway freight train, nothing stopping the costs from escalating every year. At one point, medicine was considered “non profit” only to be changed during the Nixon years, and then our country became “profit over patient,” especially when it came to the insurance companies. Insurance companies have found ways to increase their profits from skyrocketing premiums, co-pays, deductables, and all other means to increase their profits.

And that was where the Affordable Care Act (nicknamed “Obamacare” since he was the president at the time to sign the bill). This law was supposed to rein in out of control health care costs and premiums, by requiring everyone to carry insurance. The theory was simple. Insurance companies only make money, if they do not pay out claims. The only time they do not have to pay out claims is if the people paying premiums are healthy. Therefore, you need to have health people buying insurance to counter all the sickly people using the insurance. And that makes sense. But another major factor of the ACA, it required coverage for those of us with pre-existing conditions, and for some of us, like me, that is an expensive condition. By all means, requiring everyone to pay into the ACA, in theory, insurance premiums and health care costs were supposed to lower, but they did not. The ACA had its faults, but our government over the years bears the blame for not fixing the things wrong with the ACA, one party for not correcting those mistakes, the other for trying to scrap it all together, a financially lethal decision for many of us if that happened.

Which of course, leads me to my usual battlecry, “UNIVERSAL HEALTH CARE!” We are the only industrialized nation not to offer it to our citizens, and the reasons are many, but not qualified.

“We can’t afford it as a country.” China, India, both larger than the US have it. England, Japan, Germany, Canada, Brazil, France, and Italy have comparable populations and have it. And with the money the US pays out in “defense”, health care costs of universal health care pale in comparison.

“The wait times are too long to be seen.” Yeah, this is not really an argument to have to deny universal health care coverage as anyone paying for insurance will tell you, even with insurance, the wait times are too long. It took me nearly a year and a half to be seen by a gastroenterologist for a pre cancerous condition I have with my esophagus from my cancer treatments. Yes, if I develop cancer in that time, it is a year and a half until I can see her. And I have this kind of wait time issue, though not as long, but six months, with the other doctors I have to see. So, this argument does not hold water. We already have the wait times.

“You can’t see the doctors you want to see.” Yes you can. There may be some limits such as health care across state lines, but that is where a private option would come into play. And here is the thing, try actually seeing a doctor today. Chances are you are instead going to see what is called a PA (physicians assistant) who went to medical school, but is not a doctor, or perhaps a nurse practioner (and I will never knock a nurse, they are the best), and possibly what is referred to as a medical administrator. Who you see is already dictated by the insurance companies.

“I don’t want people who don’t work getting free health care.” Ah yes, the “cutting your nose off to spite your face” argument. Without even knowing why a person may be in the situation that they are in, a judgement has been made against that person, and even if it was to your benefit, to hell with offering healthcare to someone you have deemed not worth it. Even if it costs you more money.

“I don’t want government controlling my health care.” I really do not understand the reasoning of supporting this argument because it just does not make sense, common sense. If you compare what we pay out in insurance premiums and co-pays and deductables, versus what a taxpayer funded health care system would cost, the money per person would be over $20,000 less each year spent on health care coverage for universal health care coverage. And I don’t know about you, but if I had a chance to save 20k a year, why wouldn’t you do it? To some it is worth spending that money just to keep the government out of their health care, not allowing the government to control their care. But wait, don’t the insurance companies actually do that? Health insurance companies most certainly interfere and deny health care, using AI roadblocks to fight your doctors and make it nearly impossible to be taken care of. Claim denials range from 20% to over 50% depending on the insurance company and state. Patients get denied for current safer and more successful means of treatments, just because AI says so. But to some, “at least the government is not doing it” and that makes it better, right? RIGHT? Better to pay 1000% more to a for profit insurance company that does not give a damn about your health and will deny you the care you need than to have it paid by the government.

While the ACA had its errors, and politically its enemies in the Republican party, Republicans actually had their own form of the ACA back in 1994. Republicans blocked President Clinton’s plans for health care, but at least had their own. So at least, back in 1994, Republicans were at least not against health care like they are today. But our typical government, could not get any agreement reached.

So here we are, in 2026, health care costs and insurance premiums continue to skyrocket, with no restraints in sight. The results are catastrophic with millions losing their health care coverage, no longer affordable. Patients having to make the choice between rent and medicine, bankruptcy or life. For over ten years, we have listened to President Trump talk about a plan, a framework, but so far, nothing as far as an actual bill, actual help in reducing costs. Unfortunately, I do not see any details, just words, and not very assuring words either. I am referring directly to the White House website, so there is no media bias in what I am saying or arguing.

President Trump’s “plan” “will slash prescription drug prices, reduce insurance premiums, hold big insurance companies accountable, and maximize price transparency in the American healthcare system.” I will simplify the concept. Instead of taking money that was given to the insurance companies as ACA subsidies, he wants to give the money to the taxpayer. But you have to understand, it will not be every taxpayer. There will be qualifications just like there was for the ACA, and the money given will be nowhere near what is needed to help with the costs of the premiums. The bait is that you will be able to “shop” or “make a deal” with insurance companies for best price which you do not have to be a major material goods supplier to know there is not bargaining edge being a single person entity.

The “switch” in this “bait and switch” is that the claim is that by taking the ACA subsidies away from the insurance companies, to be paid instead by the subscriber, the insurance companies will lower their premiums. If you believe this, I have beachfront property in Vegas to sell you. This “plan” takes away profit from the insurance companies. Why would they lower their premiums and take the hit to profits? That just does not make sense. If anything, the insurance companies will raise their costs even more, well overshadowing any dispersement to taxpayers to help with costs.

Another part of the Trump idea, basically amounts to what is called “pooling.” In order to lower our costs, we simply sign up for a particular plan that offers only certain levels of coverage which will obviously exclude anything catastrophic. As much as people objected to paying for insurance under the ACA because they were health and didn’t need insurance, having a pool of really sick people, chronic diseases and cancers, will face astronomical and unaffordable rates and not have any coverage. And it is completely disingenuine to make the statement “and those with pre-existing conditions will still be able to have coverage. This type of idea is not a good one at all if it does not provide affordable coverage.

The president also addresses drug pricing, and again, I just do not see his strategy reducing costs by taking away the profits to Big Pharm. His claim is by ordering foreign countries to raise their prices for other countries, will lower ours, and that just is not true. It is just going to increase their profit margins.

“Transparancy” is also on this plan, requiring entities dealing with Medicare and Medicaid to display and explain charges, which should be a no-brainer anyway. I can remember a time, even back in 2008 with my heart surgery, seeing a breakdown of my charges from a tylenol to the bed on my pillow, as well as the surgery itself. So making that law, which currently the president is not doing in this step of his plan as of right now, would be a good thing.

The truth is, as long as our health care is treated as a for profit entity, costs will continue to rise, become more unaffordable, and more will die. It is time to take the insurance companies out of the equation in trying to figure out how to lower costs. And universal health care, with a private option is the way to do that. I pointed out the cons above, but when you consider the pros; access and affordability for everyone, a healthier society, lower costs overall and reducing the need for bankruptcy which is not good for the individual or the economy, and being healthier, would lead to a more productive country, and definitely outweigh the cons and the spite against universal health care.

But hey, what do I know? This is not a political thing for me. It is literally a matter of life and death. And as costs continue to rise while no solutions are being sought, the answer is right in front of everyone, universal health care. It works for the other countries, it would work for us.

Good Cancer News, And Even Better Cancer News


(photo courtesy of istock)

First things first, just recieved notice from WordPress, I have been writing “Paul’s Heart” for thirteen years! I cannot believe it has been that long, and I am just over 5700 views from hitting 100,000 views! And those are purely organic views, I have never paid to promote my page. This success is because of those that follow me, and even just as importanly, share stories that they feel will make an impact on someone who might just need it.

I enjoy writing. It has been a good avenue for me to release stress, organize thoughts, inform, and celebrate. I have been published many times in various publications, and of course published my first book, “Paul’s Heart – Life As A Dad And A 35-Year Cancer Survivor,” available on paperbook or E-book on Amazon.

And for the last two years, I have been doing videos and hosting lives on TikTok, Youtube, and Instagram, as well as many years on Facebook, sharing and advocating for cancer patients and survivovrs. Enough is not done to share, inform, and inspire cancer survivors, and that is all I have wanted to do with “Paul’s Heart.”

So the other day, I was excited to see that two news networks, ABC and NBC, posted a rare but exciting news story on cancer survivorship. NBC’s title “7 in 10 cancer patients now survive five-plus years,” while ABC’s was titled, “More people are living 5 years after cancer diagnosis, new data shows.” This is definitely exciting news to hear, especially when you consider back in the 70’s, only 50% of cancer patients survived more than five years, and in the 90’s that number increased to 63% (per the American Cancer Society). Compare this, to when we (me and those of you born before the 1980’s) when all we believed was that cancer was an automatic death sentence because that was all we knew without the internet.

Credit for this milestone in survivorship is given to improved treatments, early detection, and even a nod to a reduction in smoking. There is also a better understanding of how cancers work and using targeted therapies.

I do wish that the article had broken down ages of the patients as well as modes of treatments; surgery, chemotherapy, radiation therapy, immunotherapy, transplants, combinations of any or all. Alas, it didn’t.

And while this is indeed great news, as the expression goes, “as the good Lord giveth, our government taketh away.” Last year, according to the articles, cuts to cancer grant research funding of 31% in just the first three quarters of last year, already are having a negative and reversing impact of any gains made in the treatment of cancer and survivorship. And now, the Affordable Care Act subsidies have been dropped, which means many cancer patients will no longer be able to afford the insurance to cover their treatments. There is no mincing words. They will die.

Anyway, the news today is supposed to be a good thing, so let me get back on track.

As much as I wanted to celebrate the article, instead, I felt the article had the chance to do so much more, and fell flat. An article that brought so much excitement and good news, could have, and should have gone further, and did not. And so, I did what I often do. I got to typing, to both networks. I told them they forgot the rest of their story.

As someone diagnosed with cancer, all we want to know is that we can beat it, and that we will live a long time. And evidently to science and the media, this “long time” is five years and that is good enough. Here is how the conversation went for me with my oncologist 38 years ago (doing the math, that is waaaaaaaaaaaayyyyy more than five years ago, you can see where I am going):

“Hodgkin’s has a very high remission rate, and once you hit five years, there is a confidence that you will not have to worry about it coming back.”

Most of us cancer patients and survivors have likely heard similar. But in that moment, all that stands out to us is, “so it is gone then, forever, right? As in cured?” And then my doctor said, “I don’t like to use the word ‘cured’, I prefer ‘remission’.” Well I prefer the word “cured,” so…

If the goal is to have the cancer gone forever, does it matter which word gets used? Technically, yes. Remission means that there are no long signs or symptoms of cancer remaining, especially per labs and scans. This means that the cancer is not expected to return. But, it does not mean that there could not possibly be any remaining cancer cells left, which could result in a relapse. And while the oncologist may be confident in the treatment, they are not willing to bet their house the cancer is guaranteed to be gone. So then what good is the word “cure?” Cure means that the cancer is permanently gone. What does that mean exactly? How long does it take to declare “permanently”? After all, I am in remission more than 35 years now. It will be 36 years in March. Shouldn’t this count as being cured? Isn’t 35 years long enough? The truth is, remission has been so ingrained into my thinking with survivorship, I still only refer to myself in remission.

Ok, regardless of the tomato/tomahto argument of remission versus cure, hitting that five year mark is a good thing. We all want that. But is that all that there is? Science and media seem to think so. The magic five-year mark is still the only benchmark being discussed. What does this mean to the cancer patient/survivor? After five years, don’t expect anything? Tomorrow could be it? Don’t make any long range plans? Do you see where I am going? I wrote a book referring to a “35 year cancer survivor”. Cancer patients and survivors do live well beyond five years, and hardly anyone ever talks about it, or is willing to. Sure, I constantly discuss this, but you do not hear of it from the science and medicine community, and you definitely do not hear it from the media. BUT WE ARE HERE! WE EXIST! LONG TERM CANCER SURVIVORS LIVING 10, 20, 30, 40, EVEN 50 YEARS AFTER CANCER! WE EXIST!

When it comes to numbers of survivorship in years, I am most familiar with those dealing with Hodgkin’s Lymphoma since that is what I had. But I do know, other cancers treated just as successfully have to have long term survivors like me, and just as with Hodgkin’s, it just does not get talked about. Responses on social media to the ABC and NBC articles proved that. Responses covered a range of cancers, even those once thought as incurable:

Acute Lymphocytic Leukemia (ALL) – 28 year survivor

Kidney – 19 year survivor

Breast – 26 year survivor

Colon – 9 year survivor

Cervical – 10 year survivor

Lung – 7 year survivor

Stomach – 8 year survivor

Ovarian – 15 year survivor

And of course there are the hundreds and hundreds of Hodgkin’s survivors I personally know, many with more years than me in survivorship. One of my closest friends will close in on the fifty year mark next month.

But we are here, the long term survivors of cancer. And we know things that need to be shared with cancer patients, and those survivors going for the five year mark. Too many doctors are not having the discussion that needs to be had, with life after that five year mark, that time period when an oncologist is likely to release their patient, go on with life.

First, understand, there is a whole lot of life after that five year mark. And while the cancer may be gone, things have changed for you. Things are not the same for your body and your mind as they were five, six, seven years before. And you are not likely to be able to get back to that life, and perhaps not even want to. But you have gone through an enormous trauma, that does not just go away. Yes, you can go on, happy as can be, just know, it is likely going to be different. Some of us refer to this, as a “new normal”. And that is okay. Because you are in remission. And that is what matters most.

Even before you hit the five year mark, your life will have begun its path toward the rest of your life, and hopefully well past that five years. If what you want, you will likely find that career, have that family, travel, record a hit record, whatever, you will have whatever opportunities that you want to make and take. There is just one thing you need to do, to increase your chances to make that happen. And it is not a big deal. But to those outside of your cancer, they may not understand.

There is no “just getting over it” with cancer, emotionally or physically. It is one of the scariest times of our lives, our lives threatened by something we know may have killed someone we know. And yes, there is an innocence that gets taken from us. And not getting over it, or not forgetting about it, does not prevent us from a long and happy life. Quite the contrary. I know that I had a deeper and stronger appreciation for the little things, friendships meant more (especially those who stood by me), and an understanding that I would take one day at a time. But there was one thing more that I needed to do, take better care of myself. My body was “scarred” by the cancer and the treatments I went through. My body took a beating, and needed to be looked after, if not by the oncologist, then my primary care doctor.

If you recall back in the beginning, prior to treatment, you were informed of potential side effects, not guaranteed, but possible. They were short term and long term. Chances are the short term were spot on, hair loss, nausea, etc. And we dealt with them, and recovered from them. As we reached remission, the cancer “gone,” we no longer thought about side effects. And as the years progress, we forget about the “late side effects” that were mentioned in the beginning. And the truth is, not everyone will get them, unlike the short term side effects. But for those that do develop late side effects, knowledge and treatment/intervention is critical to long term cancer survivorship.

Thanks to long term cancer survivors like me, and those before me, who were unfortunate to be someone who developed late side effects, medicine is now aware of the care cancer patients should have long term. There is only one problem. The information is so slow to get out there, which is why I fault ABC and NBC for not doing a more thorough story. Because it is not good enough to just say living with cancer past five years increased to 70%. The goal should be a lot longer, and some survivors are going to need help doing that. But which ones, and how? There is no way to know who will end up with late side effects, because no data base exists or was ever created. We were not supposed to live this long after cancer. And if you have not developed any late effects, or worse, are unaware of the odd and unusual things happening to you medically, your medical team is at a loss. But if you are someone like me who has followed the advice and guidance of fellow long term survivors, and the need to follow up on health after cancer, there is a long life ahead. And I am counting on many more years.

Whether you are just reaching the five year mark, or are years passed that, you MUST have a relationship with a primary care physician, someone who knows your cancer and treatment history. With information provided by several oncologists and other cancer advocates on the Children’s Oncology Group (ignore that it has “children” in the title, as much of the information pertains to radiation, surgery, and even some chemotherapy drugs used in other cancers), there is a PDF called Long-Term Follow-Up Guidelines for Survivors of Childhood,
Adolescent, and Young Adult Cancers ( https://www.survivorshipguidelines.org/ ). I also provide the link on the site. Here you will find a listing of treatments, conditions, and chemotherapy drugs, and their potential impacts on particular systems of the body. This information is invaluable to a PCP as it tells them what to look out for with you, based on how you were treated. All the PCP needs to do is a simple baseline on the system impacted (chest CT for radiation and the lungs, an echo for the heart, etc.). Hopefully everything is good, and the next tests would be scheduled years later. But, BUT!, if something were found, your PCP would be able to refer you to the necessary specialist to follow up and follow their plans, whether more surveillence or other corrective action. The key is to stay on top of anything that could develop. Again, not that it will, but just in case. We have no idea if we are going to be the lucky ones who do not have any late issues or unlucky and do. This is why we need our PCP’s especially after the five year mark.

Please, do not hang your head over this. Do not let others tell you, “that must suck having to still think about it after all these years.” No, it doesn’t suck. Do you know why? Because for the last 18 years of my 38 year survivorship have relied on having skilled and knowledgable doctors, and following their recommendations. And that is the difference between me typing this now, or being dead on April 18, 2008 from a massive widow maker heart attack. 2026 for me as a long term cancer survivor is going to be one of my best years yet, as I will see my youngest daughter reach her major adult milestone age, and I will get to witness my older daughter graduate from college.

Cancer survivorship is not just about getting through treatments and reaching remission. There is a new life, a new normal that needs to be built and worked for. And in the end, I will tell you, it is so worth it.

Root Forward, Don’t Scratch Backward


(photo courtesy of Facebook Pennsylvania German)

As someone with Pennsylvania Dutch (German) heritage, there is a custom in my family, that on New Year’s Day we eat pork. Of course, all the holidays seem to have their “meat” of the holiday, whether it be turkey on Thanksgiving, ham on Easter, and though I have never had a Christmas goose, we usually had some sort of fowl. But on New Year’s Day, the menu was pork and something called sauerkraut. Yes, the same condiment you put on hot dogs at a ball park during a baseball game.

If you like cabbage, chances are you will like sauerkraut, because that is all that it is, finely shredded cabbage. It is fermented with salt, and the smell is likely what turned me away from it as a child. My grandmother was notorious for fermenting and pickling (with vinegar) vegetables. The pungent smell in the house lasted for days.

The truth is, sauerkraut is actuall good for you, packed with vitamins and minerals, boosts gut health, the heart, and the immune system. And you would think this would be a convincing argument for me with my health history to make this a part of my daily diet. Nope. I am permanently against sauerkraut. Now to get all nerdy about the fermenting process, it is driven by lactic acid, which squeezes out the juices of the cabbage, then the cabbage sits in that juice and ferments.

Now for the super nerdy… isn’t lactic acid what is the cause of sepsis, a life threatening condition? I only know this because I was septic due to pneumonia back in 2012. So relax, there is no conspiracy against sauerkraut, but there is a difference between the lactic acids in suaerkraut and the lactic acid produced in the body, which I did not know about until I wrote this post. Simply, the lactic acid in the body is considered an L-lactic, while the lactic acid in sauerkraut is D-lactic, and there is a difference. I am not going into that science lesson on this post, just know there is a difference, and you are okay to eat sauerkraut if you can get passed the smell and bitter taste.

So, getting back to the pork on New Year’s Day and why. The Pennsylvania Dutch eat pork on New Year’s Day, because a pig roots forward, and fowl, like a chicken (we never had chicken on New Year’s Day), scratches backwards. So, you go forward into the new year and leave the old year behind. The picture above is exactly what our plates looked like at dinner on New Year’s Day, except mine was missing the sauerkraut.

Oh, one warning, if you were out the night before as many New Year’s Eve revelers do, and drank heavily, and still under the influence just now a hangover, you might want to skip the sauerkraut. Not a part of the custom, and definitely not the way you want to start the new year.

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