Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “The Heart”

92% – Does The Majority Really Matter?


In a recent USA Today headline, “Our System Is Sick”, the claim is that 92% of all Americans want changes in healthcare.  Some of the stats shared by USA Today:

95% want affordable car

94% want lower prescription drug costs and affordable and accessible coverage of pre-existing conditions

93% access to doctors and hospitals

90% improving health care itself

85% want all to have health coverage

That last stat is really kind of odd, and actually quite a large number to object to coverage for everyone.  I really do not understand that, unless, UNLESS, to want everyone to have health coverage, that would mean you would have to concede that health care is a basic human right, and not a privilege.  Some Americans just are not willing to accept that concept.  And that is sad.

Being a cancer survivor, I have a HUGE vested interest in this fight.  At the age of 21, I was invincible.  I was immortal.  I had also previously dropped my health insurance that my parents had been paying for me.  I was healthy.  Why would I throw money away into something I was never going to have to use?  I would be giving money away, for nothing.  My history shows just how disastrous that thinking was.

Another political season is upon us, and that means of course increased arguments and more importantly, more empty promises when it comes to what to be done about health care.  Yes, I am a cynic about this.  Having a huge interest in health care personally, over the years I have become a single issue voter, and that issue is health care.  In my nearly 30 years of survivorship, we are not much better off than I was back in my cancer days.  And it has not mattered who was president.  Clinton brought us HMO’s, which was a discounted health plan, but you traded the lower cost for a lot more bureaucratic bullshit when it came to getting cared for.  If you had something actually wrong, you were restricted who you could see, could be denied critical testing until you exhausted appeals until your situation was dire, or worse.  The Affordable Care Act (ACA), was supposed to be a huge step toward making health care affordable and accessible, but it too had flaws, a lot of them.  The biggest flaw?  Not correcting and improving those flows.  But with fighting from both political parties, ultimately, the losers were Americans dying for affordable and accessible health care.  The huge step backwards came with the current president, who chipped away at the ACA, as the entirety of the act hangs in the balance of total repeal, in spite of him promising “the best health care ever.”  Three years into his presidency, nothing, except he would deal with it once re-elected.

I do not want this post to be about the failings of all of our presidents to do the right thing, and that is to make sure that every American has the right to affordable and accessible health care.  Instead, I want to refer back to the statistic above, 85% of the people surveyed want all to have health insurance.  I want to talk about that 15%.  That 15% is the reason, and evidently enough to prevent any kind of solutions to our health care crisis.  It was believed that a “public option” to the ACA would have made a difference.  It never happened.  And there is plenty of talk about “Medicare For All”.  And that is all that has really happened for three decades, lots of talk.  And you know what has happened in all that time?  A lot of people have died, waiting, hoping.

So who might that 15% of America be that do not want every American to have the right to health care?  I have some theories.

The Health Insurance.  I have spent a lot of ink bashing the insurance industry, deservedly so.  The basic concept of insurance, you pay them money in case you get sick.  They only make money, if you do not get sick.  Well guess what?  Just as I found out at age 22 getting diagnosed with Hodgkin’s Lymphoma, plenty of people find out they actually do get sick, and many cases extreme.  The only way for the insurance company to survive, is to either raise premiums (and all of the other components such as co-pays, etc.), deny coverages, or deny patients.  So yes, the insurance industry is one of the big bad guys in the health care crisis.

Now it also needs to be stated, I have many friends who work in the industry.  They get paid to administer, sell, and answer all forms of issues.  It is how they make their living.  These are very good people and would lose their jobs without the health insurance industry, though I am sure in a government run health care program, they would have that option, as well as the many benefits of a federal employee.

As many candidates for president either push for elimination of the insurance industry for health care, others opt for a side by side option with federal and private insurance, the truth is, the health insurance industry will not survive a “Medicare for All” or hybrid.  “Medicare For All” shuts the insurance down completely, but those who offer MFA as an option, in hopes of driving down premiums and other costs, the insurance industry simply gets choked out if it cannot charge enough to make a profit.  Seriously, why would you pay a higher rate for the same coverage?

Taxpayers  The boogie man here is the word “tax.”  Nobody likes taxes.  And the only thing worse, is an “additional tax.”  But as anyone with a 3rd grade education should be able to do, figure out the math benefit of an MFA versus traditional insurance coverage.  I want to be clear, I am using simple and basic numbers, not actual numbers, but the example is used to demonstrate the impact.

A tax of let’s say, 10% is taken from income.  An annual income of $45,000 would be taxed $4500 for the year health coverage.  Currently, and I do know this as fact, a single policy holder in Florida can pay $1600 per month even having no pre existing conditions through Blue Cross.  This amounts to $19,200 per year.  Again, put the mind of a 3rd grader into your head… which is better for you?  Paying $4500 a year, or paying $19,200 a year.

There are actually people, and I know several, that have no problem paying nearly $15,000 more than they would need to pay, as long as they were not paying a tax to the government.  The literal definition of cutting your nose off to spite your face.  The war cry “I don’t want government involved in my health care.”  The people with this attitude have accepted their belief to rather be broke or denied health care, than to pay a tax to the government.  But this group needs to go a little further into detail.

“Christians” and other people just worried about themselves  I remember as far back as the 1970’s and 1980’s, we used to be a nation that cared about others, the homeless, the unemployed, the sick.  Now I purposely used the word “Christians” and had it in quotes, because there are those that hide behind that title and yet contradict the beliefs of their religion, to care about others.  And here is why I shut that argument down.  I actually have friends who adamantly state…

“I am not paying for someone lazy to have health insurance.”  Their use of the word lazy is really vague, and I imagine it is on purpose.  Because if you pin someone down by asking why you think someone is lazy, unless you are 100% aware of the circumstances of an individual, you have no idea why.  And honestly, why is it anyone’s business why someone is not able to work, or unable to find work.  It makes no difference the reason why.  You know the expression, “don’t judge a book by it’s cover.”  We are no different than a book.  I am a bit more open about the health issues that I deal with, and therefor do not usually get called out, anymore that is.  But there are those who do not make their issues known publicly.  And who are we to judge their circumstance?  Do we not have enough on our own plates to worry about?

So if we deal with the insurance industry, and get people to understand common sense that it better to pay a lower figure tax as opposed to a high profit premium, we still have the thoughts of not wanting to help others as the speed bump to lower health costs and affordability, even if it meant better for themselves.

Look, health care was not complicated decades ago.  And everyone was taken care of.  I had to ask my mother how my care was handled as a child.  She paid $5 for an office visit.  And I recall a hospital surgery in my early childhood, that, my mother, a single mother at the time, was not forced into bankruptcy with the bill from the hospital.  And admittedly, there was a thing called “malpractice” lawsuits that increased health care costs, because doctors had to carry insurance against those lawsuits.  And because that made healthcare costs rise, the need for insurance came along.  And then, Big Bad Pharma found their goldmine.  If I needed medicine from my doctor as a child, guess what, the medicine was given from the doctor’s office itself.

We know the reasons for the high costs of health care.  We know this can be dealt with.  We know that the majority of Americans want it dealt with.  Why are we still just talking about it?  If you are a candidate for president, I am listening if you want my vote.  Every other industrialized country covers its citizens, not profiting off of their sick.  Sure there are problems.  But those problems are no reason to just keep talking and do nothing.

Geezer Alert – I Am “Becoming My Dad”


“Why, when I was your age, I walked to school four miles, uphill and downhill, through two feet of snow.”

I received one of those “talks” when I was a child, and I have actually told the story to my daughters that because of the city school that I attended, having no school buses, I actually did walk to school, four miles, up hills and down, and since there were no buses, we had no snow days.  I actually even drove my daughters the route I used to walk, just to give them the actual perception.

Of course, one other notable difference between our generations, music.  I have finally hit the stage where I will constantly say, today’s music sucks.  The singers are no talent hacks pushed by record companies trying to make money off of images of the singers, and not their actual talent.  Gone are the days where artists and bands have any kind of longevity.  That said, I did get by without my kids being sucked into the Justin Bieber, Taylor Swift, and Post Malone phases.

But on a recent trip, I found myself in an uncomfortable position, stuck next to two other passengers who were discussing their personal and professional interests.  Not that I am anti-social, and I do not know many who would argue to the contrary that I actually never shut up, on airplanes, I usually do not have any conversations.  These two were half my age, I know because he told her his age, and she told him her age.

Both were young and barely had made their footprints in the working world.  They both seemed driven.  He was in his first year of law school, excited to have his Summer employment lined up, something he said was not very easy for a first year law student.  She was a former nurse, now pursuing a career in the insurance industry.

It was a short flight, but they talked a lot, non-stop.  There was no need for me to be involved with their conversation.  But it got to a point, where I really wanted to.  I did not.

You see, for being so young, and honestly, I think they both seemed quite intelligent, and definitely determined, I could not feel worse for them.  It is one thing to strive for success, and there is not doubt, they both had that ability, but it was going to come at a price.  They just did not realize it.

Again, I did not interrupt.  But what I heard, actually made me sad.

She was a mother of a young child, recently married to someone in the military.  She complained to the young gentleman, that she used to be a nurse, but grew tired of having to wait for her relief to come in at the end of her shift.  So, she chose to enter the world of selling life insurance.  The downside, she is now missing things involving her daughter as her current career has her travelling, and an employer who does not look favorably on family people.

He had a girlfriend, but had no interest in getting married, focused on law school.  He was not sure what area of law he was going to get into, but felt litigation was his strong suit.

Both of them, had been talking back in forth, about their drive for success, in the here and now.  There was no long term conversations about family, retirement, or something else.

I was less than five years younger than both of them when I was diagnosed with Hodgkin’s Lymphoma.  Prior to that diagnosis, I appeared to have a career in business management, months away from getting married.  I was clearly only thinking about the “moment.”  And in an instant, with just three words, “you have cancer,” everything changed.  My life changed forever at that point.  And now, divorced (for the second time), with children involved, early on, I missed a lot in their lives, that I cannot get back.

I do not want you to think I am judging their decisions, but as I have seen often before, they are definitely missing the big picture.  Keeping a perspective on what should really matter to each of them.  All the money in the world, the most powerful title in a company, cannot replace what you gave up.  Memories cannot be gotten back.

You Are Cured – The “Myth” And The “Birth” Of The Long Term Survivor


“I am positive that we can get you into remission.  I don’t like to use the word ‘cured'”.

These were actually the words spoken to me by my oncologist when he had diagnosed me with Hodgkin’s Lymphoma.

As I have begun drafting my 30th Anniversary post, this is one of the conversations that had popped into my head.  I had thought that the whole idea of treating cancer, was to “cure” it.  Not just settle for putting it into remission, the technical term for making the cancer go away.

Cancer patients are often told of the magical “5 year” mark, which probably all of us equate to the term “cured.”  And we have every reason to feel this way.  After all, if the cancer has not come back after that time, would it not be logical, and fair, to say we have been “cured?”

Like I said, I am gathering my thoughts for hopefully the most inspiring post yet on “Paul’s Heart.”  “Cured” is a very powerful word.  In its simplest form, it means as a cancer patient, “we are done with it.”

I am fairly certain that the reluctance of my oncologist to say I was “cured” my have either been from a liability angle or perhaps did not want to be compared to an act of God, but what if, in hindsight, to be able to be “cured” required a lot more than just having no more traces of cancer cells?

From the very first appointment post treatment completion, we set our sights on the day that we never have to set foot in an oncologist’s office ever again, nor should we have to, being “cured”.  And unless you have had this experience, you cannot blame us.  And decades ago, most of us were given our release once we hit that five year mark.

But those of us that are long-in-the-tooth can attest to, decades ago, it was very rare to hear of anyone surviving cancer.  There was no social media to “ring the bell” when done with treatments.  You mainly only heard when people died.  This attitude continued well on into the end of the 20th century.  So, we rarely heard anyone beating cancer, but we also never heard of people living a long life after cancer.  And evidently, medicine did not either.

Turn on the television, and chances are you will see a commercial for some sort of drug.  And during that commercial, will come a long list of side effects.  These are known as short term side effects for the most part, that will either happen soon after you take them, or once the medicines have a chance to impact the ailment.  It is unusual that you will hear anything about the long term effects either because they have not been studied yet, or, and this is key, a certain side effect has not happened enough to be publicly documented with a warning.  (See the post I wrote about taking statin drugs).

For many cancer patients, this is exactly what happened to us.  We were all given information as to the short term effects of the treatments from nausea to hair loss and more.  But very few were aware that there would be long term issues, including medicine.  After all, remember that “5 year mark”, or the “cure”?  The fact is, there were no long term studies done back in the 30’s, 40’s, 50’s, 60’s, 70’s, 80’s, and not until the 90’s was the idea even approached about the possibility of late developing side effects from the extreme treatments received earlier.  In actuality, these long term survivors approached their doctors with symptoms that often case did not make sense for their age or current health status, and therefore really had nowhere to turn, and in many cases ignored.  Or, if they were “lucky” that someone might have an idea of what they were dealing with, hoping the doctor had the experience how to handle the issues.

For me personally, I stopped seeing my oncologist in 1995, five years after I received my final treatment.  In 2008, by dumb chance, my primary care doctor ordered a cardiac test for a symptom I had been experiencing for several months without complaining.  36 hours later I was on an operating table having my life saved with an emergency double bypass, caused by radiation damage for my Hodgkin’s.

Why was this not caught sooner?  Because, remember the “5 year mark?”  There was no long term studies, at least not popularly known at that time, that cumulative and progressive damage would occur from such high exposures as I experienced.

I could go on and on about this issue, and have done many other posts on it, so I will not.  My point is this.  In 2020, more doctors and oncologists are more aware of these late developing side effects.  More importantly, medicine has now realized that part of dealing with these side effects, is surveillance.  And if cancer patients are going to live longer than the five years, and the potential for these late effects is cumulative and progressive, then surveillance is necessary for the rest of the life of the cancer patient.

And if the idea of being “cured” of cancer is being done with it, meaning we just put it behind us forever, are we really cured if it is necessary to be watched for the rest of our lives, for what comes next, then are we really “cured?”

I am not saying this is a bad thing at all.  I am eternally grateful to be here thirty years later.  But because of long term cancer survivors like myself and so many others, medicine now knows that cancer survivors need to be followed up, forever.  And it is important that “newbies” understand this, that it is easier to deal with an issue that is just developing (determined from a baseline) before it gets too bad such as the “widow maker” I dealt with.  It is just as important to encourage the prognosis of remission, to emphasize the importance of surveillance for the rest of their lives.

Many of my fellow long term survivors, and I, feel as though we were guinea pigs with our treatments.  And perhaps we were.  And because of the issues we developed throughout our survivorship, we are feeling like guinea pigs again.  But the good news is, medicine is finally catching up.  Medicine knows what it means to survive cancer.  And doctors need to do their part to make sure patients are not mistakenly thinking it will be behind them.  This is not to say that you cannot enjoy life in remission.  By all means, I have done so.  But a cancer survivor must also be diligent.

Perhaps my oncologist was correct in not wanting to use the word “cure” but for a different reason.  For me, I still use the word remission, and feel I cannot use the word “cured” for the reasons I just mentioned.

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