Paul's Heart

Life As A Dad, And A Survivor

Archive for the day “May 20, 2020”

This Day Does Not Get Any Easier

I hate May 20th.  For many reasons.

Today marks six years that my father passed away from lung cancer.

The loss of a parent is the most painful emotional pain second only to the loss of a child.

In order to even move on with your life, you must be able to grieve.  But what happens when you cannot grieve, either because you do not know how, or are not given the opportunity to grieve.

My father and I were estranged through most of my childhood as a result of issues from my parents’ divorce.  A family emergency early in my adulthood, would open a door to allow my father and I to mend fences.  For over two decades that followed, my dad and I grew close, both as father and son, and as friends.

But in 2013, he was diagnosed with stage 1 lung cancer, thought to have been treatable with a good prognosis.  Because of my health history, my father felt I would be a good health advocate for him to be able to make sure he understood everything being discussed and to help with decisions.  My father had also directed my step-brother to handle all of his other affairs through legal power of attorney.  Both my step-brother and I had no issue with what my father was asking.

Personally, I was dealing with my own health issues, well-documented here, super involved with my children’s school, working full-time, campaigning for our local school board, and had just begun the process of my own divorce.  I am known for my calm and skilled time management, as well as being able to delegate things that were able.  I was confident that I would be able to deal with my father’s health as well.  Especially with the prospects of a good prognosis.

I have documented my dad’s journey on a separate post in the past.  This post however, is going to go where I have never discussed with anyone, let alone publicly.  Clearly though, it has had an impact on my being unable to grieve for my father.

The important part that my father expected of me as my dad’s medical representative, was to make sure that all of his medical wishes were followed.  Unfortunately, even when put in writing, it is difficult for anyone not put in the position, to understand the harm and damage caused when trying to inflict one’s own opinions and beliefs, to over rule what the patient wants.

With me, my father knew that I would make decisions that would have to be made, without emotions.  I had to do what he wanted, as his representative, not prevent what I wanted done as his son.  And nearly everyone around my father refused to accept that.

The funny thing, is not one person has ever talked to me about the decisions that were made and why.  I have heard of things “told” and responses have gotten back to me.  But yet, not one person has ever talked to me, at least given me the chance to explain things.  At this point, I do not give a shit anymore.  Estranged from 95% of my family and those around my dad, I know what happened, what my dad wanted, and I made sure his wishes were carried out.

From the moment my dad’s health went way south, I worked with my step-brother to make arrangements for most would be impossible.  My dad and my step-mother had been together over four decades and for the first time in their lives, would be apart in separate facilities because of an insurance technicality.  But decisions were made, at a cost that had no impact on someone who was going to die, yet allowed the two to be together in the end.

That cost, was the loss of certain medications that he had been taking for years, now terminal, in hospice, were no longer going to be of benefit to my father.  In return, my father and step-mother were allowed to be in the same nursing home in his final days.

Another issue I get blamed for, was not fighting for “clinical testing” for my father.  At the time, there was a lung cancer drug in a clinical trial, basically a drug that shows promise, just trying to scientifically prove it works.  Ironically, the company that I worked for was the one doing the clinical trial.  I knew all about the drug.  But I also knew how clinical trials work.  And the fact was, my father was too compromised with all of his prior health issues, and definitely too far advanced with his lung cancer to have qualified.  I was faulted for not fighting for my father to be an exception.  After all, I fight for my health care and can get things done.  But those around simply felt I just wanted my father to die.  Fuck all of you.

Perhaps even most cruel, was when some of those family members actually told my father about that clinical trial.  Horrible, horrible human beings.  I believe their intent was to talk him into convincing me to pursue the clinical trial, but instead all it did, was give my father false hope.  How lovely was that.  He was going to die, something that he had previously understood, but selfishness caused my father further pain.  Fortunately, this did not last long, as when the cancer spread to his brain, his memory was affected and those kinds of conversations stopped.

Up until this point, my father and I would have many conversations.  He was still concerned about my health, and about what I was experiencing with my divorce.  One of the last conversations that I had with my father, at his insistence, was making sure that I did everything I needed to do with my divorce case.  He was aware of the many issues that I was facing, but insisted no matter what, I make the decisions that I must, that I must protect the relationship between myself and my children.

Facing an aggressive judge and warned so by my attorney, I was seeking extreme measures to meet the demands of what was expected of the judge’s rulings, currently unable to do so, because of my failing health.  And that required me looking for work, out of state, away from my children.  And the one thing that stood in my way, being able to get interviews in person out of state.   My father was made aware that I had an interview to get to, and I would need to travel.  Given his current status, I did not want to leave his side.  But he was adamant realizing the urgency on me getting hired, and being able to meet the judge’s likely rulings.  He wanted me to go.  My ticket for travel was purchased for May 20th.

On May 12th, the family all received the call that my father was in end stages, that his vitals were beginning to fail.  There is not timeline when this is recognized.  But soon, several days had gone by, leaving even staff confused about my father’s vitals and status.

My step-mother was wheeled into my father’s room daily so that she could be with him, in the event he passed.  Close to a week had gone by and nothing had happened yet.  One thing that is believed about someone lying in hospice, they need to be “let go.”  And we all had believed we had done so with my dad.  Each of us had said the things we needed to, to allow him to go to his father and siblings who had passed before him.  Yet, he was still hanging on.

Because of the situation of my divorce, I was spending the nights with my dad for a long while, going home in the morning to shower, get changed into fresh clothes and return.  But on the morning of May 20th, I also had to grab clothing for travel later in the day.  I was now at that crossroad, afraid to leave my father for something that would have major implications for me with my divorce, at the risk of not being there if my father would not pass.  There could be a chance that I could get back in time as he had been holding on much longer than expected.  But I remembered what my father wanted me to do.  And just as he had asked me to be his medical proxy because he knew I could make decisions without emotional handicapping me, he made a point to tell me prior to his incapacitation that I would need to go.

I left my home for the nursing home, spending several hours there.  There was no change with my father.  As noon approached, I had a decision to make, and I made it, as my father wished.  I left his bedside with the intent to do what I needed so that I could appease the judge in my divorce case.  I would get back as soon as I could.

That chance never came.  Fiver hours later, I got a phone call.  My father had passed away.

During my dad’s battle with lung cancer, I sacrificed my own appointments for my health issues, delegated everything I could in regard to my school board campaign, tried to carry the load of my involvement with the school where my children attended, all the while trying to figure out how to do what the judge was demanding I do, accepting no excuses for health or inability to earn  what I had been because of my health.  I did everything I possibly could, but it was not enough, especially to save my father.  And in the end, whether it was his intent or not, his insistence on me travelling, did pave the way for me to get my divorce case on the right path.

There are many other little “fires” that occurred throughout the time, that many did not agree with decisions that were made.  Again, I made sure that my dad was cared for, and that his wishes were met.  And for those that want to still challenge me, I am right here.  I know you are reading this.  You are willing to take commentary and make judgement with things said second hand, and certainly brave enough to react back.  It has been six years since any of us have talked.  And I am okay with that.

No, my dad would not be happy with that last sentence.  In his final months, even during some of his most difficult days, he tried his best to mend fences, to get everyone to spend his final days in peace with each other.  We all failed in that.  As his son, I failed at that.  And the problem is, no one can accept that there was a difference between me as a medical proxy and his son.  I can admit, as his son, I could have easily felt as passionate as everyone else about his final care.  But that is not what my dad wanted.

And because I never really got to spend my dad’s final days as his son, there is still so much left unsaid, and undone.  And I cannot get that back either.  And because of that, I cannot grieve either because I have never been able to deal with his loss.

I miss my dad.

John Lennon – Double Fantasy

This is the second album that had an impact on my life.  It did not start that way.  At first, it was simply just a long and awaited return of one of the Beatles in a solo project.  It had been a while since we had heard from Lennon.  As a fan of the Beatles, I was just happy to hear anything new, from any of them.

Like many Beatles fans, I did take issue with having to buy an album with Yoko Ono, his wife, on it.  In today’s tech world, I would have loved to have the option of just purchasing his songs from the album.  My aversion to Ono was not just the historic role she is assumed to have played in the break up of the Fab 4.  I really do not feel she had any talent.  It as not unlikely to hear her vocals compared to a cat in heat sitting on a fence in the middle of the night howling.

I was immediately drawn to “Starting Over,” which many fans took to think Lennon was looking to regain his activity level in the music industry.  Other great songs on the album included “Woman,” “Watching The Wheels,” and “Beautiful Boy” (a song perfectly placed in the movie “Mr. Holland’s Opus”).  The album was pretty much half Lennon, half Ono.  So as soon as I could pull the songs off of the record onto a cassette tape, I could enjoy his great songs off that album.

But then on the evening of December 8, 1980, John Lennon was assassinated by a deranged fan in New York City.

This album (at the time), was going to be the last new music we believed that we would ever hear from John Lennon ever again.  And even more definite, there would never be the opportunity for a Beatles reunion.

In spite of Ono’s role on the album, this is still one of the most influential albums in my life.

Something We Can All Relate To

Our country, no, the entire world is in the grip of what is likely going to be the worst health crisis it has ever faced.  Information and misinformation make it difficult to figure out who is telling us the truth, and likely making it more dangerous in delaying protective steps necessary to protect us, and prevent the situation from getting worse.

The pictures I have shared above are emotionally provoking.  Some people see this photos and they see ignorant and selfish people risking not only their own health, but the health of all, including those on the front lines who may one day have to treat them because of their poor decision.

But for others, and this is going to shock some of my readers, but I can kind of empathize with them.  I am stressing kind of, because I believe without a doubt, they are fools and defiant as a three year old throwing a temper tantrum.  And this has nothing to do with their right to assemble and protest.  I believe in that right 100%, no matter what the cause, unlike those who have a selective criteria to be an acceptable protest.

Protesters want us to believe this is about freedom and liberties.  We are expected to think it is more important for an economy to thrive than for people to live.  But I want to argue something even further.  And here is where my empathy comes in.

What a great musician, what a great album.  The title of the album… definitely thought provoking.  The title track from the album started as follows:

“Well they took me to the hospital,
And I swore I would’t go.
My blood was running much to high
My heart was much to slow.
The doctor had some questions, somethings he had to know.
My baby shook her head and said, the boy’s got no control.”

I used to think the worst thing about dealing with cancer used to be the hair loss, the nausea, the fear that I was going to die.  Looking back, I could not have been more wrong.

I was recently interviewed for a podcast for my perspective as a long term cancer survivor.  And it was during this interview that I realized what was actually the worst part of fighting cancer.  Seeing the protests and seeing all of the social media posts, confirmed it.  The two situations, while the circumstances are different, the perspective is the same.  It is a matter of all of us recognizing it, and then being able to empathize with each other.  Perhaps that might be the door to open enough to allow us to support each other during this health crisis.

My story, like others, I was “livin’ life” to its fullest.  Parties.  Working.  Girlfriend.  No cares in the world.  Not even aware of anything in the world.  I was in control of my own life.

But with the diagnosis of my cancer, and actually every health crisis that I have face and continue to face, I lost all control.  I had no control.  I had to give up all control as if my life depended on it.  Because it did.

The difficult part is, that you do not realize that you have lost all of that control with your life, with your body.  You are too distracted by all of the other things going on with your diagnostic tests, treatments, relationships, and other aspects of your life that you could not put on hold.

With the diagnosis, and this goes for any serious illness or injury or trauma you face, it is the same situation every time, you lose all control.  You have to get to this appointment.  You have a schedule to keep for your treatments.  There are things you need to avoid so that as not to react or counteract the treatments.  Patients get told of things that cannot be done, temporarily or ever again.  And your plans for the future?  Those likely will never exist again as you had dreamed of.  This is what we in the cancer world often refer to as the “new normal” once we are done.

For a period of time, could be months, could be years, as cancer patients, or dealing with another serious issue, we no longer have control.  We have to listen to those that know how to get us through the particular situation that we are dealing with.  We have to trust them, because they are the ones with the experience.

And yes, by losing that control, we lose our freedom.  But it is temporary and we know that.  And that is why we accept that loss of control.  Because we know in the end, that temporary concession is what will help us to survive.

To those who are protesting, I respect your right to protest.  I may disagree with some of the motives, but one thing I definitely understand, are those protesting over what they feel is a loss of their freedom.  Like millions of others, I get that.  And that is why I can empathize with them on that fact.  Knowing this, why cannot we convey to those protesters then, and convince them, that this loss of control is temporary?  For the health?  For their lives, and possibly the lives of their loved ones?

Yes, I am naive.  It should not be that hard to understand.  Unfortunately our society is not only politically driven, but also politically split.  There will always be an opposition now to the party in charge, and that opposition will have zero trust.

I cannot imagine where I would be today, thirty years later, had I not trusted my doctors.  Did I like them all?  Absolutely not.  I have written many times of my aggressive behavior toward at least two of them.  But that never kept me from trusting them, surrendering the temporary control of my life, so that they could save my life.

Like I said, I am naive.  The only way that you can truly appreciate this type of thinking, is to go through some sort of trauma like this yourself.  Sadly, this crisis is that trauma.  But unless you have gone through something before this moment, you cannot relate what I am saying.

But just as my battle with cancer, with Covid19, we are being asked to take precautions.  One of those precautions we must take, is to protect us from others that we cannot rely on to also take those precautions.  The contagious period is only up to fourteen days.  In theory, with what was being asked of us, with 100% compliance, worst case, we could have been done with this no longer than three weeks, at worst a month wrapping things up.  Yes, to do that would have meant giving up control, or as the protesters call it, their freedom.

So now, as restrictions ease up, in spite of continually climbing numbers, which means it is still bad and getting worse, but it is going to return us to the reckless exposure and risks, and we will have even more gruesome numbers to deal with that have been bad enough to take in.  And instead of a short time loss of control, or freedom, we will be looking at an extended and sustained period of loss of control.

I get it.  It was a political point you were trying to make.  But in reality, it was about giving up control of your life.  Most if you are fortunate, have never had to do that.  As a cancer survivor, I did.  I knew what to expect during this crisis.  I went through so much worse than we were being asked to do during this crisis.  I lost financially big time.  I know what it is like.  I know what financial loss feels like when you cannot work.

What it boils down to is the comparison to the three year old spoiled and defiant child who will not be told what to do.  In the end, that child has no choice, one way or another.  Except in this case, one way is dealing with the crisis in an accepting and cooperative effort, the other way is living with a death count that is unacceptable.  And being one of the lucky ones not to succumb to Covid19 does not make you right in your decision and stance.

This is not about freedom.  This is about control.  And right now, the Coronavirus is in control.  Are you going to make it worse, or are you going to do your part, as the “United” States of America, so that we can get through this, recover, and rebuild?  That choice you do have control over.

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