Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

Understanding Steroids


When we think of steroid use, two popular examples come to mind, pro-wrestling and professional sports.  Steroids of course increase size, strength, and power.  Long since banned in most activities, steroids do have an actual medicinal use, and there is a likelihood at some point in your life, you may have, or will be given some form of a steroid.

Doctors often prescribe steroids to help relieve pain or inflammation, or in the case of breathing issues such as asthma and allergies, much needed relief.  In fact, during my days of chemotherapy for Hodgkin’s Lymphoma over thirty years ago, Prednisone, a popular steroid, was part of my chemotherapy cocktail to help rebuild muscle cells killed off from the chemo attacking all healthy cells.

Prednisone is often considered a quick fix to certain situations, like the time I had an extreme case of poison oak exposure.  I have also seen it used in cases of respiratory attacks resulting from COPD or other lung issues.

But there is a dangerous side to using steroids, requiring monitoring by a doctor, which is why they have to be prescribed.  Depending on how the pill prednisone is taken, most times it is prescribed in a “step-down” manner, 6 pills one day, 5 pills the next day, 4 pills the following day, and so on until you get to the last single pill on that final day.  This is because as the medicine helps you, it also leaves you vulnerable by repressing your immune system, simply put, it shuts down your immune system while you are on it, leaving you vulnerable to illnesses and infections.

Medically, there are a whole range of other issues a result of taking steroids.  Forget the muscular, but the skeletal, high dose usage can lead to Osteopenia.  If that sounds familiar, because it is related to Osteoperosis.  One of my long term issues is Osteopenia as a result of the 8 months I took the high doses of prednisone.  I am at an increased risk of breaking something if I fall.

Basically, steroids can have an impact on any number of systems of the body.  The most critical, is the cardiac system.  Which is why it is so important, as we are still dealing with finding a way to treat Covid19, though Dexamethasone (a steroid) is showing promise as a treatment for advanced disease.  But to someone who has cardiac disease, or worse, is not aware they have cardiac disease, steroids can cause permanent, if not fatal damage.

One fact about steroids I was unware of, false positive testing results.  I used to be employed in an area that required annual Tuberculosis testing.  One year, I ran late with the surveillance, and prior to that testing, I received an injection of Depimidrel, an oil based steroid for seasonal allergies I got, only once a year.  Clearly I did not have TB, but the test resulted in a false positive, requiring a chest x-ray to confirm that I did not.  Depending on the situation, this can cause quite a problem.

Steroid use also causes an increase in hunger, and also fluid retention, resulting in what a lot of my fellow Hodgkin’s survivors refer to as “moon face”, a result of an extreme weight gain from the months on that drug.  I actually gained 50 pounds while on chemotherapy for that reason.  So, at the end, I looked nothing like the stereotypical waif-like chemo patient, other than my bald head.

But currently, steroids are getting a bit more recognition, because of Covid19, and one particular patient receiving them, the President.  To be clear, this is not a political post!  Steroids can and usually do, have any number of psychological impacts on the patient that takes them.  Issue range from depression, amnesia, anxiety, irritability, anger, inability to concentrate, rage, and so on.

Think about it.  If you are old enough to remember when steroid use was prevalent in the NFL, how many really aggressive players that were, resulting in other players getting hurt.  Too many athletes on steroids committed suicides.

But I was not a professional athlete.  I was a cancer patient.  And I was warned by my oncologist, that mood swings were a huge concern.  I scoffed at him, because I was, and still am, a real chill person.  Boy was I wrong.

About halfway through my treatments, while at work, I was having issues with a co-worker, who was a bit disgruntled over his pay.  He was known to challenge others in spite of the fact that we were forbidden from discussing payroll among each other, and as it turned out, for good reason.

He had been after me for quite a while about how much he thought I made, and he was not happy about it.  I had been there less time than him, but I seemed to have more responsibilities and relied on more.  We were not union, so that was not a concern.  But he caught me the wrong way on the wrong day.  I snapped.

Uncharacteristically for me, I exploded.  “Jesus Christ!”  And I whipped out my payroll stub to shut him up, and prove to him once and for all, that he made more money and to leave me the Hell alone.

Oops.  In spite of me being there less time, it turned out, I was being paid more, for whatever the reason.  But now a whole other can of worms had been opened, violating company policy on discussing individual payroll.

My point is this, it is not just mainstream media making an issue about the president being given Dexamethasone for treating his Covid19.  The concerns about receiving the high dosages of steroids is legitimate.  And given his position, and the decisions that need to be made, combined with his temperament, the concerns for any ill emotional reaction is a big deal.

To get through his treatment, is expected to last more than a week, and then the drug itself must leave the body, taking another one to two days.  It is easy for this former steroid patient for me to see the effects that the medicine is having on the president.

The Toughest Part Of My Heart Surgery


A post from a fellow Hodgkin’s Lymphoma survivor triggered an emotional flashback for me recently.  A young parent themselves, one of their main concerns, is for their young children, and this will be the first time that this friend will be apart from their children for any amount of time.  Even more relatable, are two main factors, this fellow survivor is having open heart surgery, and their children are the same ages as my daughters were back in 2008.

My daughters were three and five years old, and had never been apart from me.  I went from just telling them, I had to go stay overnight somewhere for something special, but would see them the next day, to the horror 24 hours later of thinking I would never see them again.

A blockage had been discovered that was believed correctable with a simple stent being placed.  I would be up and going in just a week, an overnight stay in the hospital.  No big deal.  I was still coming out of the anesthesia that day, when the doctor was informing my family, my situation was more grave than thought, and instead I would need to have open heart surgery the next morning.  You can read the story “CABG – Not Just A Green Leafy Vegetable” for that whole situation.

But as I came out of the fog from the anesthesia, and began to understand the severity of what I was facing, there was even a more daunting concern for me.  If anything bad happened to me during this surgery, I never got to see or hold my daughters again, especially before the surgery.

I am a firm believer in not discussing things with children that are not age appropriate, and this was something that was not going to be discussed with them in great detail.  But that did not make my heartbreak any less.  Even if the surgery was successful, I would be in the hospital, expected to be about a week in length.  I had never been apart from them at all, even until the day before for the stent process.  I got to talk to them on the telephone that night before, and that was going to have to be good enough.  In less than eight hours, I would be taken down to the operating room.

Three days following the surgery, out of the ICU and in a private room, I still had some tubes and wires, but not nearly as many as when I first came out of the surgery.  At that point, it was decided to bring my daughters to visit me, a surprise visit, because they were all I could think about.  My older daughter was curious about all the equipment that I was hooked up to.  And the joke, er… concern, was that she would not do to me what she did to her mechanical horse Butterscotch, when we were not looking and she started pulling the horse’s wiring apart.  My younger daughter on the other hand, sat on the foot of my bed.  This was the first either of them had seen me in this type of condition, and clearly she was scared.

The picture above, was taken a couple days after we got home, no worse for the wear.  In fact, my younger daughter had resumed her playfulness with me, forgetting the fragile area of my chest, starting from across the room, running full tilt at me, unsuspecting, planting her head into my chest like a battering ram.  That was when that “heart” pillow came in handy besides my coughs and sneezes.

My daughters would witness another event, just as severe, and probably more scary, because they watched it happen in real time.  After just celebrating my older daughter’s birthday  that day, an ambulance crew was rolling me out of our house on a stretcher, again facing a dire situation, septic shock, due to a specific type of bacterial pneumonia I was unaware that I had.  One of the only memories I have of that early 4am event, was the look on my daughters faces as I was rolled by.

As I talked to my fellow survivor, one of the things I wanted to do, as I do with others in our situation, is to share our experiences, as to offer some sort of comfort to the stressful event soon to take place.  I encouraged her to focus on the surgery.

I had spoken with both of my daughters this evening, to gather their perspective on what happened those two time periods, the second time period they were five and seven years older.  Neither really remembers anything from my heart surgery.  And all either of them really remember of the second episode, was all the policemen and paramedics in the house.  It was never a thought to them that I would not come back home, though it was unusual for me not to be home.

For the second time, I had been apart from my daughters.  And this would happen again several times.  It never got easier.  Just as my fellow survivor feels I am sure, our children mean everything to us.  Fortunately they were at an age, where they really did not need to know or understand how serious everything was.  All that mattered to me, was that they knew I would come home.  And with every time something happened, this was how I handled it.  Each time, they believed I would come home.

Late in their teenage years now, they are learning more about my health history, and the origin, my battle with Hodgkin’s Lymphoma and the treatments used to save my life.  They can handle the details as I have given them in small amounts, and not in vivid detail.  As adults, they will learn the seriousness of the things I face, because as they will be my medical proxies, it will be important that they know all the details.

My daughters do not recall anything from my heart surgery, and have very few memories of the second event.  And I am glad for that.  They have witnessed enough with me in the hospital.  They know my situation is serious.

More importantly, they know that they are the reason that I keep fighting when faced with these challenges.  My divorce has caused quite a bit of separation, and while I do miss every moment I wish I could have with them, it pales in comparison to the emotional pain I felt back in 2008 when I thought I would never see them again.

Yet, here I am.  Another year closer to seeing them graduate, hopefully go to college, and perhaps start a family of their own.  Something back in 2008, I never thought I would see.

A Reason To Celebrate Labor Day


It is odd.  We celebrate this weekend for all the wrong reasons.  We recognize it as the “unofficial end to Summer,” the last hoorah to go to the beach or Summer party before schools begin.  Only a select few actually understand what the holiday is about.  Politically speaking, for many, it is not something that is wanted to be talked about.

We know why we celebrated Veterans on Veteran’s Day.  We know why we honor and memorialize our fallen on Memorial Day.  But Labor Day is not just a day off or a long weekend.

Labor Day recognizes the advances of the Labor Movement, as well as those who have contributed to the advances and achievements.  In 1887, Oregon became the first state to recognize Labor Day as a holiday.  By the time the United States recognized it as a national holiday in 1894, thirty states had already recognized this annual recognition (Wikipedia).

The key is what brought us to this day.  It begins with the “evil” trade unions and the labor movement.  The whole idea of this movement was to create a better and safer working environment, and to be able to negotiate for better wages and benefits.  The concept is simple.  It is more successful to negotiate as a group, than individually.  Someone asks for something individually, it is very easy to tell that one person “no.”  But if an employer risks a work interruption, a “strike,” where workers refuse to work until the company and union comes to an agreement, the employer is likely to not opt for the work stoppage and risk profits.  It should be noted, union workers do not earn their pay while on strike, and unless the union is financially prepared, even health benefits are at risk by a “strike.”  It is not really an option that neither side wants.

You can thank the Labor Movement for the “8 hour work day” which became effective in 1886.  Can you imagine what it would be like to have an employer require you to work sixteen hour days?  You can be thankful for breaks during the work day.  You can be thankful for the establishment of OSHA requiring workplace protections.

Labor Unions came into the picture in 1935 with the signing of the National Labor Relations Act.  This allowed workers to organize into unions and engage in collective bargaining (negotiate a contract) to earn better wages, safer working conditions, benefits, and job security.

In the beginning, unions had a major impact on such dangerous jobs as coal mining (a separate story deserving its own post), and many other large industrial jobs.  Eventually other public sector jobs would also join into the labor union representation such as teachers and police.

Over the years, unions have been portrayed as both evil and necessary.  Evil, because to provide a better work environment means it costs a company more profit to provide such.  Politically, as companies lobby the government for assistance against labor unions.  Obviously, if a company can pay someone less, they will make more profit.  But the question is, at what cost to the employee?  The answer, a company owner only cares about the profit, not who earns it for them.

If you have never belonged to a union, it is very easy to be jaded against them.  Chances are, all you have ever witnessed, are news stories about strikes.  Whether they be transport workers, nurses, airline pilots, teachers, or whoever, if you do not belong in a union, the immediate warcry is “greedy bastards” when the workers are shown on strike, asking for better conditions and more pay.  And why that warcry?  Because it is likely, that person does not have that representation, and thereby deems it unfair since they do not have the opportunity to have the same negotiating power.  But you do.  You choose not to.

Unions have typically been portrayed as thugs in Hollywood (both of these were great movies by the way, “Fist” starring Sylvester Stallone, and “Norma Rae” starring Sally Field).  There is no doubt that there have been issues of violence associated with labor negotiations.  But I would argue, that for the most part, the benefits of being represented far outweigh the benefits of not being represented.

Personally speaking, my grandmother belonged to the Electrical Workers Union, and was even a treasurer for her local organization.  I laugh at the thought of my grandmother being a “tough guy” in a union, as she stood only 4 foot 7 inches tall, and was quiet in appearance.  My mother also worked with the Electrical Workers Union.

Then came my turn.  But up until that point, I was one, like many, opposed to unions, for the same reasons as others, misconceptions leading to unfair judgments courtesy of my jealousies.  In 1997, an opportunity came up to work for a major pharmaceutical company, with the entry level position, including union membership.  I would become the third generation belonging to a union, oddly, the Oil, Atomic, Chemical Workers union, yes, in pharmaceutical.  Immediately, I would see the difference and the benefits to me.

In 1988, I was diagnosed with cancer.  This made me uninsurable for health insurance, life insurance.  Hell, employers did not even want to hire me at all, just because I had cancer.   But the first benefit I received following my probationary period?  Guaranteed Health and Life insurances.  You see, the union negotiates this for their workers.  That is why they call it collective bargaining.  Because it benefits their entire group.  Everyone in that group has to have the same thing.  I could not be turned down just because I had cancer.

Sure, the money was also good.  And compared to other pharmaceutical companies that did not have union representations, my counterparts were lucky to make even half of what I was making.

Work environment?  If I felt my work area was unsafe, or equipment was lacking, I could count on my union leadership to demand action.  In industrialized jobs, workers are automatically at a higher risk for injury and death, and deserve all precautions to keep them as safe and protected as possible.

And a big thing with unions, job security.  Do you know anyone who was fired just because a boss did not like the otherwise productive employee?  Have you ever been laid off from work, after working decades, while the company kept someone who just started, simply because they made less money?  Seniority is one of the pillars of the labor movement, job security.

Of course, there are problems within the unions, the slackers who goof off while other good hard workers carry a respective work ethic.  Some of these get into trouble, and seemingly get away with it, unscathed.  That is the benefit of a union, representation to get you out of trouble, by accident, or intentionally.

My experience with the union, I will always support unions.  Besides finally obtaining insurances that I was otherwise denied, my wages allowed me to purchase a home, and allowed me the opportunity to bring the two most important people into my life, my daughters.

And when I needed my union the most, in 2008, following my emergency bypass surgery, for my heart, caused by damage from my cancer treatments nearly twenty years earlier, when my employer threatened to fire me, as my FMLA (Family Medical Leave Act) days had expired and demanded me to return to work, even though I had not recovered.  My union fought for me with the Americans With Disabilities Act protections.  You try to do this working for Walmart.   Eventually, I would become a shop steward, a “lawyer” or union representative for my co-workers myself.  And I was a good one.  As one of my co-workers noted, I may not have been well liked by all (I was a stickler for rules, so I could be a pain in the ass), but everyone knew I would support and protect everyone.

I worked for my employer another five years before my disabilities became too much for me, and for my employer to accommodate my health restrictions.

When it came to my early retirement, my union took care of me as well.

The same cannot be said for my peers with other companies who do not have representation, doing the exact same work as me.  But envy should be held against me, because I had representation that I was worth as a human being?  Or should there be displeasure in the fact that someone is either unable or unwilling to establish representation?

As you are out on the beach today, or having a barbecue, be glad for unions and the labor movement.  That is why you are hopefully not being forced to work today.  And if you are being forced to work… I hope you are being compensated properly.

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