Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

Addiction, Mistreated, or Misdiagnosed?


We were stunned by the death of music legend Michael Jackson.  And recently shocked again, but the death of another musical icon, Prince.  The common link between their deaths, pointed at the use of prescription drugs.  I will not be one to throw the term “abuse” or “addiction” as many other choose to do.

Michael Prince

Their deaths were much more complicated than just being given sleep medication and pain medication.  I know this personally, not because I knew either artist, but rather because like so many other patients who deal with long term, permanent, or progressive health issues, I have personal knowledge of what it is like to have to live with pain, discomfort, and frustration from either the lack of care, or the inability to get the care necessary to improve the quality of life.

I am not naïve.  As a caregiver, I have witnessed many times, patients simply throwing out symptoms, in order to be able to get prescription drugs in the form of painkillers or sleep aids.  For being one of the most advanced countries in the world however, our medical society does not do enough to confirm or deny when someone else’s issues are real, or manipulative.  It is not necessarily medicine’s fault either.  Some are very good actors and actresses.  Some are just a pain in the ass.  I have watched people go from one end of a spectrum of diagnosis straight through to another, still come up with nothing solid, but have been given more than a dozen prescriptions to try and deal with the increasing list of symptoms.

Then you take someone like a long term cancer survivor subjected to 4 times the lifetime maximum exposure of radiation, or chemotherapy so toxic that in one of its forms, one drug actually used to kill thousands of people in a middle East country by their dictator leader.  There are many people in this situation, including me.  I am not known as a complainer for my body’s ills, so when I actually do voice a discomfort, I get attention.  So, when I was diagnosed with a “widowmaker” blockage with my heart at the age of 42, it was not something that doctors had been looking for or expecting.  And to be honest, if not for the tenacity of my primary care doctor, any other doctor might just have missed this.

Once it was discovered that I was dealing with late effects, then it became much more clearer what I was feeling with my body, and how my body often reacted.  Before then, it made no sense.  But as things were diagnosed, more than a dozen issues, treatment and management could begin.  Of course, that was only going to be as effective as the lifestyle that allowed it to work.

Blue collar my whole life, I would show up at work “on life support” if I could.  Much to my doctor’s chagrin, I was very tough on my body, not in a dietary or exercise sense, but stress, emotional and physical.  I worked very long hours, and carried very heavy loads, even considered too strenuous for someone without my similar issues.  Several of my doctors hinted that perhaps it was time to consider “retirement” just to give my body a break.  In fact, one of my doctors looked like he was going to explode when I made the comment that “I deserved to be in the pain and discomfort because that was my price for having been cured of my cancer.”

This is how it started for me.  It started with moderate pain medicine, which all that did was allow me to not feel as much pain, ignoring my limitations.  This resulted in more pain, which of course resulted in stronger prescriptions, and the cycle just continued.  Then you add in the insomnia from the pain.  Yep, add in sleep aids.  And those needed to be increased because the stress and pain continued to increase.

Just as antibiotics become useless as we build up tolerance, so do pain meds and sleep aids.  Again, without the lifestyle change, this becomes a major issue.  It is not fair to just simply label someone as an addict.

We are a “bust your ass” society when it comes to money and possessions.  We are driven to do whatever we can to get everything we want.  And that comes at a price.

I do not know what caused Michael Jackson to require the amount of sedative he used to sleep.  I am sure it had to be stress and anxiety related.  But again, without any change in lifestyle, those meds were going to be necessary for him, and as they became ineffective, newer and stronger medicines were going to be needed.  Sadly, he lost his life.

And for Prince, if you have ever seen him perform, if he was dealing with pain, which again, seeing him perform, you can see how much his career could easily have taken a toll on him, pain meds can only do so much without changing the lifestyle.  Which means, as your tolerance builds, you need stronger meds.

No, I do not believe that either death was related to addiction.  Yes, the meds have their addictive qualities, but if you do not change the lifestyle that causes these types of issues, they will only continue to exist and need to be dealt with.

My health issues will never go away.  They are progressive.  But as my doctors have acknowledged, we can at least slow the process down, and improve quality of life.  The rest is up to me.

Memorializing My Father – 2 Years Later


Today marks two years since my father passed away.  Last year, I wrote a story that was published in Memorial Sloan Kettering’s annual “Visible Ink” anthology project.  My story was selected to be performed by professional actors.  I am hoping the link works, but if for some reason it does not, you can find this video on Youtube by searching my name, and “My Dad Was Just Like Me.”

I will always remember him telling me how proud he was of me, through not only my triumphs, but also my trials. That no matter success or failure, facing good or evil, I always stayed true to the person I was inside.

I miss you Dad.  I miss my friend.  I miss my confidante.  I miss my Dad.

 

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Does This Help You Understand?


I wrote the other day about my inability to grieve.  I want to grieve.  I just cannot.  All too often I find myself unable to give me the levity to allow me to feel and show my emotion, because all too often, I am dealing with other issues at the same time, which do not allow me to let my guard down, be weak,  show my emotions, grieve.

I was reminded of this, when this morning my memory was jogged by two posts, one from this blog (May 18, 2014 – you can search the archive for the date), and a Facebook memory that came up today.

It was two years ago today, with my father’s health rapidly declining, that I had to appear at Family court, in spite of the possibility that my father could pass away at any moment.  Of course, the courts were not going to grant any continuance, unless it was agreed on by the other side.  It was not, and the custody hearing was held.  At its completion, I rushed back to the nursing home to be by his side.

his empty chair

This was my father’s wheelchair.  Two years ago, it had been more than two weeks that he had even been able to sit in it.

just before

The cancer at one time, had been classified as stage 1, the best chance for cure.

At this point, my father was of sound mind, when he asked me to be his health advocate.  Though I had a lot going on in my private life, my job, a school board campaign, a spouse battling an “illness”, and my own health issues, I knew that I could easily handle what my father asked me to do.

And then things went wrong, nearly everything went wrong.  My father’s cancer turned aggressive and rapidly grew to stage 4, and terminal.  Suddenly, time which was only fairly frequent with his care, became more frequent, with me often spending several nights a week with him in the hospital or nursing home.  But issues developed in my personal life that my father knew about, and in the middle of this fight, I ended up separating from my wife and filing for divorce.  Again, with all this, I was dealing with my own health issues.

My father was well aware what was happening in my house, and was still trying to offer me guidance and emotional support.  But once my father was declared terminal, I chose to no longer disclose the issues that I was facing with my divorce.  In fact, I spoke to no one about my situation, except for when the doctor, the nursing home or hospice staff needed to get in touch with me.

I dealt with bullshit rumors and innuendo, which only warranted any kind of merit, because ignorant people chose to make comments about stuff they did not know anything about, having no information.  The comments that I had to endure about my father and his final weeks, because of issues with my divorce were hurtful, and unforgivable.  These people, and I am not just talking about the obvious who were affected by the divorce, but my own family members, who had no idea the challenges that were against me, chose to attack me.

My divorce process had pressed enormous pressure on me, and decisions had to be made in my life, which were perceived as being anything but necessary.  But from a legal standpoint, I had no choice.

My father was dying.  Yet a pending court order had my back against a wall.  I had been advised by my attorney, the enormous support award that had the likelihood of being issued based on an income that I was no longer making, nor able to make.  This is called “earning capacity” and is used to prevent spouses from sandbagging their income to influence an award.  I also had someone aggressively pursuing and promising ultimate sanctions against me if I did not comply.  I was not allowed to ask for a “time out” while my father was dying.

My siblings and I got the call from hospice that my father was in the active stages of dying.  At the same time, I had plans for a job interview that was going to help me with my divorce issue, but with my father expected to soon pass, neither seemed it was going to have an impact on either.  But many days went by, and my father hung on.  Everyone was puzzled by this, as the systems of his body had clearly indicated the end was imminent.

But as the days went by, there was growing concern that I was going to have to make a decision, between honoring the orders of the family court, or being there for my father as he passed.  I had a job opportunity, out of state.  It was not a sure thing, but I had only this one opportunity.  The court would not care if I came back empty handed, the orders would stand, and my domestic situation would only get worse.

I spoke with the hospice staff about my situation, and my concerns, and my father.  Though it offered little consolation, we all came to the understanding, that my father would have wanted me to go for the job opportunity.  That job, if I were to get it, would have had major implications for my children.  My father would not have wanted me to waste that chance.

And before anyone opens their mouth about this, let me tell you something about my father.  He had over 15 years that he lost with me, because of decisions that he made in his life, following his divorce from my mother.  That man had so many regrets that he never got the chance to amend.  His granddaughters, my daughters, gave him at least some chance at his own personal redemption.  So, he understood my angst.  And I know that the decision that I made, on the morning that he passed away, was the right one.  And so I said goodbye to my father.

I got the phone call later that afternoon that he had passed away, peacefully.

I did not get the job I was hoping for, but because I was still out of state, aggressively pursuing employment, I asked that a memorial service be held for my father, on Father’s Day weekend, and I would return back home for the service, along with visiting my daughters.  It was going to be a very quick weekend, mixed with all kinds of emotions.  But never did I expect the backstabbing and innuendo that would follow.

As much as my father did not want any drama following his passing, we all blew it.  But there have been those who have chosen to take it to a different level spreading rumors and innuendo.  And that is all it is, because not one person has any of the facts because I have not discussed anything with anyone about that day, until now.

Here is the truth.  Prior to me even filing for divorce, my employer was in the process of downsizing.  Though I felt I was in fairly good standing with my union seniority, I never thought my health and my position would be an issue.  But 5 months following the filing of my divorce, it was discovered that the building that I worked in, was going to be shut down.  This meant, that movement of employees from our building to others was going to have an impact on me.  There are many who can confirm this is actually what happened.  And because of my health issues, that my employer had protected me with health restrictions since my heart surgery in 2008, there was no longer going to be enough work to keep me employed without going out on disability, which my employer was in the process of assisting me.

But the courts, and I want to be clear, I am not criticizing the court, see things only in black and white.  They did not see that this was an unintentional or preventable reduction of income, the laws allowed them to look at the salary that I once made when my issues were not as severe.  And so, in spite of submitting medical file after file confirming my disability, and of course my ex remaining silent, the court made the following ruling, that if my disability pay would not be enough, then I would have to seek additional work.  But that was impossible for two reasons.  First, how do I work (moonlight) at another job when I would be out on disability from my main employer?  Second, when I made that assertion, I was told then that I would have to just get multiple jobs.  In reality, I had not worked a regular and consistent 40 hour work week since before 2008.  And any time that I pushed my body to do so, I ended up in the emergency room, twice in serious condition (one septic), and a third time, with an undiagnosed heart episode, all within 2012.  Again, my ex knew this.  If it meant getting 4 or 5 part time jobs, this was the court’s order.  And so, I had no other choice, than to seek out employment that would accommodate my restrictions, and pay me the salary I once made that was ruled by the courts.  And time was running out for me with the court to do so.

It was not bad enough, that I had to leave my father’s side and his imminent death for one hearing, but then had to leave his bedside for an employment opportunity out of state just so that I could prevent any kind of sanctions against me.  All that I knew, was that the eventual award was going to leave me with approximately $200 per month to live on given my current disability income.  I did what I had to do, and I know my father would have understood.

But he would have been more upset not only with this criticism and judgment that I have faced from some of my own family, simply because they did not have these details, but during the weekend of his memorial, again I was criticized for my lack of “sticking around” more than just the weekend back home.  But again, here I was, trying to find employment and had interviews scheduled.  I arrived on Friday, spent the day with my daughters, and on Saturday morning/afternoon, the memorial was held.  That evening, my daughters and I took a small road trip overnight, returned on Sunday, to celebrate Father’s Day, and on the following Monday, my greatest fears were confirmed in the award that was officially handed down.  I returned to my current home that evening to continue my efforts of finding employment.  It is the opinion of some, who felt that I should have stuck around to help with the affairs.  But again, with no one knowing what I was up against, it was very easy for people to cast judgment on me.

Lost in all this, was not only not being able to mourn my father, but two little girls were also caught in this drama, and are still in the middle of it today.

I wrote the other day about myself not being able to grieve for my father, now I know why.  And the fact that I see the hurt that some have chosen to insult my father’s memory, may have something to do with it.

My dad was my best friend.  My confidante.  My dad.  And there is nothing any of you can do to take that away from me.

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