Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “October, 2020”

09 Oct 2020

9 Lives


I have often said that I feel like I must have been a cat in my prior life.  And if I was indeed reincarnated from a feline, that I hope it was at least from either of the two mighty big cats pictured above.  That would certainly explain the “fight” I possess in my character.

One of the most difficult conversations to have with a child, as a parent, is when that parent faces a difficult crisis, especially one that involves health.  The only thing more painful for a child to experience than the loss of a parent, is to watch one suffer.

So, the conversation in my many circles of cancer patients and survivors is, “when do you tell them, and what do you tell them?”

To be honest, it is going to be an individual decision each time.  But it should always be age appropriate.  One story I recall my father telling me, was that he was told his mother went into the hospital for gall bladder surgery, only to die from gall bladder cancer.  He had been lied to.

This would come back to haunt him later in his life, when I would be diagnosed with cancer, Hodgkin’s Lymphoma.  The images that were permanently etched in his memory, were of his mother, suffering, in pain, and dead.  Years later after my battle, my father would have a conversation that haunted him for years, explaining to me, why he could not bring himself to visit me following my diagnosis and during my treatment.  I may not have understood originally, but over my decades of survivorship, I definitely get it.

I have two daughters, both teenagers currently.  They were not even of this planet when I dealt with my cancer, but halfway into my survivorship, they have been witness to the many issues that I face, resulting from late effects caused by my radiation and chemotherapy treatments.  Fortunately, for most of these events, they were too young to really remember what had been happening.

As they will soon be adults, too soon for my comfort, they will end up being my medical proxies as well as my legal representatives should something happen to me.  And in order for that to happen, and work, they will need to learn what I have gone through, understand the seriousness, and most importantly, know what I want.

Like I titled the post, 9 Lives, during a recent visit with my daughters I began the conversation referring to nine lives, the mythical belief that cats somehow get nine swings at life.  It was a lighthearted method to introduce the serious events in my life, but in a way that showed I have a lot of fight in me, and the will I have to get through those things.

Life #1

I have not gone into great detail about my experience with Hodgkin’s Lymphoma.  But they get the seriousness and odds of fighting cancer.  If there is one thing my daughters are not shy about, it is inspiring others who may face cancer, “our dad beat cancer 30 years ago.  You can do it too.”

Life #2

My daughters were not even in school yet, when I faced my fate for the second time in my life, this time with something referred to as a “widowmaker,” a blockage of the main artery to the heart.  I was dying.

They know I had heart surgery.  But to this day, they do not know how serious it was.

Life #3

Four years after that surgery, another event would happen, also courtesy of my late effects, and another potential silent killer.  This time, I would be taken out of my house, at 4am, on an ambulance stretcher (I will go into this detail in another post, it deserved its own).  One of the few memories I have of that evening, is seeing the faces of fear and confusion on the faces of my young daughters as I was wheeled passed them.  During their last visit with me, I asked them what they remembered of that night, again, fortunately not much, except one could not wait to get back to sleep, the other surprised by all of the police officers in the house to help.

I had something called “aspiration pneumonia,” and I was septic.  In fact, blood tests would reveal I was septic for 48 hours.  Unbelievably, I was unaware that this was happening when I went to bed that evening.  Simply put, sepsis kills.  Time is important.

Life #4

I would have a repeat of the aspiration pneumonia nine months later, this time in both of my lungs.

Lives #5 and #6

Not medical, but both events that could have turned out way differently.

I had been through several hurricanes in my life.  But Irma was the first one that I actually experienced going through the eye.  Unable to evacuate for many reasons, all I could do was stay sheltered as best as I could.

The other event, a major car accident.  One thing I take pride in, is my safe driving record, no accidents in over 40 plus years.  Until one night, someone went through a red light, coming straight at me, head on.  I made a last second maneuver to avoid the head-on impact, instead to get t-boned (crashed into the side of my car).  Fortunately, I was not hurt.  The car was a total loss.

Both times could have turned out way differently.

Life #7

Just passing mid-life a few years ago, clearly I have been using up these “lives” at too quick a pace, and another issue with my heart came up that I was not expecting.  Because I am being followed by a specialist with my late effects, I was already aware that I do have other heart issues.  We are all watching them.  This one I did not expect.

A test that had not been done in nearly a decade showed that I had another major blockage.

So, back when my original “widowmaker” was corrected, I was told I would have a triple bypass.  When I came to, I was told only two were done.  The RCA artery, was not considered bad enough to bypass, unlike the LAD.  Only one problem, the damage to the LAD, was just taking longer to develop in the RCA.  So, since they did not fix the RCA when they had the chance, guess what got fixed eleven years later, along with another lecture on letting things go.  You see, doctors assumed with the blockage, I should have been experiencing symptoms.  Truth is, I know what I felt like originally, I did not have those symptoms this time.

My older daughter has developed an interesting sense of humor and has not been shy about this fact that I have apparently used up, seven of my nine lives at this point.

Yep.  I need to somehow slow this process down.  But if there is one thing my daughters have learned about me, a past life as a cat or not, my younger daughter describes me as one of the strongest people she will ever know.  I wish I felt like she describes me, there is no doubt what I have gone through has been difficult.  But I have so much more to do, that involves both of them, a deal that my doctors have all agreed to do their part to make sure I get to see those days… graduations, weddings, grandchildren.  I want to be clear, while I am looking forward to those last two things especially… there is no rush to get there.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment
08 Oct 2020

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.

Posted in Cancer, Family and Friends, Inspired By..., Side Effects | Leave a comment
03 Oct 2020

Voter Fraud This Is Not – Part 2


Here it is.  My official “mail-in” ballot.  IT IS THE ONLY ONE THAT I HAVE RECIEVED!  If you recall, in the first part of my “not voter fraud” post, I shared with you several items that I did receive that some people perceive as “ballot” material, which those items were not.  Though I have redacted bar codes and certain information, you can still tell that this belongs to me.

Now I know, there is the chance that someone might say, they have received multiple ballots, or even dead people have received them.  No, they do not.  If you received another ballot, it is because there was a mistake that has been corrected, and those very bar codes like you see on my packet, will no longer work on the incorrect ballot.  And the only way that a dead person will receive this is after they have died before the system has been able to catch up before ballots get mailed out.  Now, that that is out of the way.

So, the most important thing inside the packet, is the ballot itself.  My ballot happens to be 3 pages, but I have only pictured the first.  And of course, I had not filled it out just yet.  But this is the exact same ballot that I would receive, voting in person.

The next part, is really interesting.  The Secrecy Sleeve.

It is just a piece of paper, with instructions on how to secure your ballot, privately.  And to do this…

you fold the “secrecy sleeve” in half, and place the ballot inside.  And ta-da, you ballot is cast in secret.

Next, you place the ballot in the envelope that is supplied.  On the back side, is your affidavit that the ballot is yours and that you have filled it out.  It has the bar code to register that you cast your ballot, and… AND… it has a place for you to provide your signature.  That’s right, you have to sign your mail-in ballot.

Here is where the “criers” chirp the loudest.  “Nobody will check the signatures!”  Of course they will get checked.  The bar code will bring up the signature to compare the signatures, and just as if you were in person, if the signatures were not close enough, the ballot would be rejected.  Having voted in person, I have had my signature rejected in person, even providing my driver’s license.

And with that, I filled out my ballot, folded it in half, and placed inside the “secrecy sleeve”, and sealed the envelope.

Only one thing left to do, put postage on it, and mail it.  The one thing people may not be aware of, is the extra postage needed because of the larger envelope.  POSTAGE TO MAIL YOUR BALLOT IS $.70!  Again, there is a bar code on the envelope.  Why?  It allows you to confirm that your ballot was received, and cannot be submitted again.

NO VOTER FRAUD WITH THIS BALLOT!

These are difficult days for us as a country because of Covid19.  But even without Covid19, there are difficulties with voting and voter suppression.  Polling places being shut down, limiting access.  Drop boxes being eliminated.  And even difficulties with registering to vote in the first place.

Our right to vote is one of the most important rights we have as an American.  I have several options that make it fairly easy to vote, whether in person, early voting, or by mail.  And it is my right to choose how I vote.  I do not buy into conspiracy theories while at the same time, I do acknowledge that there can be problems, just not widespread enough to affect an outcome.

It does just so happen, I am one of the “vulnerable” to Covid19.  And though there are some who feel the need to “shame” people whether with words or memes, that if you can “stand in line at Home Depot” or Walmart, you can stand in line to vote, as the president himself now faces the reality, that even in an outdoor setting, someone can still contract the virus.  So, no.  Standing in line for a prescription or perhaps some groceries is a necessity for me.  Standing in line to vote, when other options are available, are not.

My ballot has been mailed, and I plan to verify that it was received.

This is not voter fraud.  And that is the end of that.

Posted in Bullying, Education, Family and Friends, Inspired By..., Politics | Leave a comment

Post Navigation

Newer Entries →