Paul's Heart

Life As A Dad, And A Survivor

Surviving Guilt

We know when we have done something wrong.  We also know if what we did that was wrong, was intentional or by accident.  Sometimes, something wrong may happen and we have no idea why.  But whether we recognize what we did, or whether it has been pointed out to us, under normal circumstances, we know what happened was wrong.  We feel bad.  Our conscience reminds us that we did something wrong.  And then hopefully, we can correct what has happened, apologize, and move on.

There are jokes and memes all around about different types of guilt from “Jewish mother” guilt, Catholic guilt.  There are more serious forms of guilt, such as those who commit crimes or other harm to people.  Guilt can be either healthy or unhealthy, depending on how you let it impact your life, especially if you cannot, or will not let it go.

This was a picture that I never thought I would see.  Estranged from my father, both of us having our reasons, one tragic night reunited us together, in a direction of healing.

My father carried a lot of guilt with him through his years.  I was just one source.  Obviously, there was my childhood, which he missed most of.  And then there was his absence during my battle with Hodgkin’s Lymphoma.

But an accident on a cold Winter’s night in December, just days before Christmas, left my father’s “cup” of guilt, overflowing.  He could handle no more, and sadly, more was going to come.

My father and stepmother had gotten into a heated argument.  Being just before the holiday, there was still some last minute shopping to do.  Having to put the argument aside, my father left the house to start the car and warm it up.  As my stepmother followed shortly after him, crossing the poorly dusk covered street, my father watched in horror as she was hit by a car, who had not had their headlights on yet.

Though my father’s attentions clearly were focused on the immediate medical needs of my stepmother, clearly my father could not stop thinking about what happened earlier that night.  He felt that had they not had that argument, at the least, he would have been crossing the street with her, and perhaps he could have seen the car, or at least taken the brunt of the impact.  He felt responsible for that evening.  He felt… guilt.  And because he could bare no more, he needed to release at least what he could.  The damage that my stepmother suffered, was permanent, and that guilt he would never be able to release.

The apple has not fallen far from the tree.  Like my father, I would accumulate guilt, some that I have been able to release, and some, like my father, I will likely carry to my grave.  And to the average person, this makes no sense.  “Just get over it.  It is no big deal.  It has nothing to do with today and now.”  If only it were that easy.

One of my first memories of something I remember doing wrong (not me in the picture), was throwing a snowball through a window.  Sure, not the smartest idea, but it was a light snow, not slushy and hard, definitely did not expect it to do damage, but it did.  And my friend got blamed for it I would later find out.  As soon as I found out, I admitted my fault.  There are a few of these stupid moments in my life as a child.  In these cases, while the actions were bad, the guilt was actually healthy, because it taught me accountability.

Then there is the unhealthy guilt.

My grandmother was my world, my moral compass.  She was my first immediate contact with the world of cancer having been diagnosed with breast cancer in 1986.  In 1998, she was diagnosed with her second cancer, ovarian.  As she was about to begin her chemotherapy, I stopped by the Saturday before just to visit her, as I often did.

Keep in mind, I had already faced my Hodgkin’s Lympoma nearly ten years earlier.  As soon as I walked into her house, I could tell something was not right.  On the dining room table was all of the literature, pertaining to things that she would need to know about going through chemotherapy.  None of it had been touched.  I wanted to think my grandmother was just neat about it, but there were no “folds” in the booklets to even provide evidence of being opened.

As I sat across from her in the living room, I noticed that she had cut her hair real short, buzz cut length, something I had never seen before.  Clearly a sign that she was preparing for what lay ahead side effect from her chemo.  But something still did not feel right.  She was withdrawn.  Barely a word was said during the hour visit.  Her thoughts were clearly elsewhere.

As I prepared to leave, I told her that I would visit her the next day.  Of course I was hoping she might seem a bit more “up” in spite of what she was facing.  I cannot explain what happened next or why.  Typically, when I left my grandmother’s house, I gave her a hug and kiss goodbye, and told her I loved her.  This Saturday, I did not.

That next morning, I was at church, when my grandmother called me.  She informed me that she was going to the hospital, that she was not feeling well.  When I told her I would leave right away, she told me to stay where I was.  I ran a youth group, and she knew I had an activity later that morning into the afternoon.  She told me that she would see me later that evening as originally planned.

Later that afternoon, during my youth event, another phone call had come to the church.  This time, and I honestly do not remember who it was that called, but the message was, my grandmother had died.  I was devastated.  Not just for the loss, but the fact that the last time that I saw her, was the only time, I did not tell her that I loved her.  I would never get that chance again.

Like my father, a guilt that I can never release.

As a rule, from that day, I have dealt with any issues, right at that moment, or as soon as possible.  The expression, “do not go to bed angry”, an important lesson both my father and I learned the hard way.  You may never have the chance to make amends.  Fortunately, there are not many things that I have done that have left me with any burdens of remorse.  And for the most part, if there are any, they involve my daughters and any absences that I may have as they have grown, a result of a divorce.

Especially this year, Covid has wreaked the most havoc in being able to spend time with my daughters, especially during the early weeks of the pandemic.  With no plans or structure in place how to deal with the outbreak, and me having a compromised immune system from my Hodgkin’s days, the most difficult of decisions had to be made, to cancel visits.  We live a distance apart, and safe travel arrangements needed to be arranged, and at that point, no one knew what to do.

But unlike my younger days, and like that of my father, I deal with my actions right away, giving the opportunity to heal and move on.  My daughters understand my health issues and struggles.  It does not make the losses any less painful, but it matters that they understand.

The toughest guilt of all to get through, not just for me, but for so many others, is survivor guilt.  Typically associated with those who have survived wars, natural disasters, tragedies and other accidents, survivors of cancer often develop guilt.  And the response from the “non-cancer” world is always the same… “you have nothing to feel guilty for, surviving cancer” or “how can you feel bad for surviving cancer?”

It is not that simple.  For instance, in my case, while Hodgkin’s Lymphoma has a fairly high cure rate, its treatments have cost me greatly with my health and late developing side effects from the chemotherapy and radiation therapy.  But again, here come the chants, “but you are still here!”  Again, it is not that simple.

These are just some of the wonderful people I have gotten to meet over my survivorship of over thirty years.  But they are all gone.  Some from the cancer, some from immediate side effects, some from late side effect issues.  They all had Hodgkin’s Lymphoma like me.  And there are literally hundreds of more photos I could post.  Why them?  Why not me?  What is so special about my body, that I am still here and they are not?

Yes, I know.  What I am really saying is, “it is not fair.”  Obviously cancer is not fair.  It does not matter how old, if you have family, if you are riding a huge wave of success.  The fact of the matter is, and I realize I do not possess the power to make the sun rise, or the waters to flow in the rivers.  But these friends of mine, deserve to still be here.  I am.  So should they.

That is survivor’s guilt.

I have spent almost as long in my survivorship, in therapy dealing with my survivorship guilt.  I have written articles and other special publications about the topic.  And still, here I am, literally and figuratively.  Still dealing with it.

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.

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.

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