Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Family and Friends”

What The Rocky 4 Soundtrack Meant To Me

When Rocky IV came out in 1985, we still had major tensions with the Soviet Union.  And this movie, the fourth in the sequel of too many, gave Americans not only something to cheer about, but to be inspired by.  Unlike the first Rocky, this one was definitely cheesy and predictable.  That is as far as I will go as far as spoiling.

But the movie did produce a great album, and this is now my third album of ten that had made a difference to me in my life.

Of course, the whole concept of the Rocky franchise simply is just overcoming adversity.  My life has been filled with adversity.  But in the first major challenge of my life, this music made a difference.

I have finally gotten around to writing the book that I have always wanted to write, courtesy of Covid19.  Of the other times I have begun the process, this being the sixth, I am now currently on Chapter 21.  So far so good.

In what I have written already, I mention that I listened to my Walkman during my treatments.  For those not old enough to know what a Walkman is, it was a device to listen to CD’s… oh hell, too much to explain progress.

I placed strategic music on this Walkman.  I was fighting cancer.  And I knew that going through chemo was for the fight of my life.  And after all, in the end, Rocky always won, literally or metaphorically.  So, with my eyes closed, I would listen to music that would have enough energy and inspiration to get me through my eight round fight.

The soundtrack is not without its flaws, but with technology, I only needed to “burn” to a CD certain songs from the album.

The 80’s pop band Survivor actually had three songs for the movie, “Burning Heart” and of course repeating “Eye Of The Tiger” used also in Rocky III.  But Survivor’s third song ended up cut from the movie and the soundtrack.  Not really sure where it would have fit, which is why it was cut, but it was a great song nonetheless.  It was called “A Man Against The World.”  Definitely written for Rocky, it is a constantly played song in my playlist.

The other hit from the movie was James Brown’s “Living In America.”  It was a rejuvenation of Brown’s popularity, but the song overall was as cheesy as the movie.

But there were two songs that did not attract as much attention, but to me were inspiring in their lyrics, and the music just lit the spark I needed to push harder, just as it did in the movie.  Robert Tepper’s “No Easy Way Out” was played during a time that Rocky was now questioning everything he had done, whether it was worth it, because of the ultimate price paid.  The other, John Cafferty of the Beaver Brown Band sang “Hearts On Fire” during the cliche training montage.  The song is heart pounding and sounds victorious.

And as usual, there are instrumentals that inspire me to turn the volume as high as it can go.  And just like Bill Conti’s “Gonna Fly Now” in the very first movie, Vince DiCola’s “War” and “Training Montage” ended my chemotherapy appointments.

But my appreciation for this odd choice did not stop in 1990 and my remission.  Every time I have had to deal with a health issue resulting from the late effects of my treatments, requiring rehabilitation or starting over, it is this same music that I turn to.

“Yo Adrien… I did it!”

When The Time Comes To Vaccinate Against Covid19

I want to state very clearly, I am not an anti-vaxxer.  Do I support every vaccine?  No.  Do I believe there is any kind of intent or negligence in their development or usage?  No.  Are there potential immediate side effects that are known?  Absolutely.  Are there potential late effects from vaccines that are unknown?  Of course.  Is there some sort of conspiracy to “implant” any “chip” for surveillance through the injection?  Well, though not likely, but thanks to science fiction and the movie “Fantastick Voyage” (I wrote about that recently), it cannot be denied.

As we try to contain and eradicate one of the worst viruses our world has ever seen, we are going to face the decision some day, the day a vaccine is created.

I received all my vaccines as a child for measles, small pox, polio, etc.  My children were also hit with all of their vaccines as recommended and/or required to attend school.

I recently documented my struggles with my immunity, and the need for booster vaccines against pneumonia and meningitis, both of which are considered mandatory for my survival.  And though strongly recommended, I routinely refuse, against my doctors advice, the flu vaccine.  My children do get them.

My children have both gotten the HPV vaccine, supposedly proven to prevent at least one type of ovarian cancer, the general type of cancer that took my grandmother’s life.  I should have been glad to have my daughters vaccinated for that, yet I objected to it.  My reason was simple.  I knew the vaccine was pushed through the approval process quickly, and that there could not have been sufficient studies done for late effects and they had not been studied.

If you follow my blog, you know this is a huge red flag for me.  Late developing side effects, and the lack of studies on them are whey I deal with what I do today.  I was a guinea pig with my cancer treatments.  Yes, the treatments were successful, but have come at a cost.

In 2010, we were dealing with the swine flu, H1N1.  This was the only year that my doctors were not giving me any kind of option as far as a vaccine was concerned.  H1N1 was not as contagious or lethal as Covid19, but it was still bad.  I was ordered to get the vaccine, newly created, as well as the seasonal flu vaccine, and was scheduled to get one of my pneumonia boosters as well.  I ended up getting all three that week.

But as I am sure will happen once a vaccine is discovered for Covid19, when the vaccine came out for swine flu, there were restrictions who could get the vaccine initially because of supply issues.  Just as Covid19 vaccines will likely be, vaccines were restricted for H1N1 to children, pregnant mothers, high risk conditions, and the elderly.

The stares I got in line from all of the mothers, pregnant or not, and the elderly paled in comparison to the pressure felt between Victor Drago and Adonis Creed.  Because you cannot see my vulnerabilities, the average person just assumes there are none.  And of course, my vulnerabilities are no one’s concerns.  But I definitely felt the icy glares from all around me, wondering how much balls it took for a “healthy looking” young man to take away a vaccine opportunity from someone who really needed it.  And if that was not bad enough, the result of getting all three of those vaccines in one week, was too much for my body to have been challenged, and I felt probably as bad as if I had gotten the virus.

And undoubtedly, this pandemic will leave me with the difficult choice again, between to vaccinate or not.  One factor that takes it out of my hands, whether the vaccine will be live attenuated or inactivated (dead).  Simply understood, one vaccine is made from the live virus, the other, from dead virus.  And there is a difference, as the inactivated vaccines are not as strong, and my take multiple boosters to build up the immunity needed.

Many of my fellow long term survivors face this horrible virus, shingles, a cousin of chicken pox.  Of course, most of us have either had chicken pox or were vaccinated.  But our susceptibility to shingles, multiple cases in fact, is due to our history and treatments for Hodgkin’s Lymphoma.  Of course, those who have not had Hodgkin’s can acquire shingles, but to prevent it, you can get the vaccine, unless, at least until recently, as long as you had your spleen.  You see, the shingles vaccine, Zostavax, is a live virus vaccine.  So we, as long term survivors can only suffer through this malady.  Until recently, a new vaccine, an inactivated one, called Shingrix came out, offering hope to millions without spleens against this painful virus.

And so, as the race is on to find both a cure and vaccine for Covid19, once again, we Hodgkin’s survivors and asplenic patients will be waiting to see which is developed first as far as vaccines, live attenuated or dead inactivated.  So far the news has been leaning to two vaccines, one in England, but both are live attenuated.  And the hopes are high enough that production has begun, with the hopes this is the vaccine.  A high cost risk if it is not.  But clearly a dead or inactivated vaccine will be long away.

And once that vaccine is actually found for those of us who are compromised, we then face another difficult decision.  Do we take the risk?  Sure, they will tell us about the short term possible side effects.  But what about the long term side effects?  There will have been no studies done.  Just like there were no long term studies done on the treatments used on me, and millions of others who lived long enough to develop them.  Do I really want to be a guinea pig again?

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.

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