Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “The Heart”

Cancer Survivor Day 2017

Today is Cancer Survivor Day.  And like millions and millions of others, I am one of those survivors.  In fact, this year marks my 27th Cancer Survivor Day.

These occasions are always a day of mixed feelings for me, because of those that do not get to celebrate with us today.  So it is important, that we do not lose the fact, that so many people were able to defy the odds, and beat their cancer.  Decades ago, cancer was an automatic death sentence.  Even back in the 1980’s when I was diagnosed with Hodgkin’s Lymphoma, the cure was not guaranteed.

For many of us, who were treated with such harsh treatments decades ago, have found ourselves fighting an ironic fight, fighting the side effects from the treatments that cured us.  We traded one fate with death, for another.  But because of us long term survivors, recent cancer patients are now treated with lower dosages with the same results, or even new medicines or therapies all together.  And as reported in the current issue of CURE magazine, the risks of late side effects for newer survivors is on the decline.  This is great news!

You may hear many of us say that we “do not want cancer to define us,” but in reality, it is unavoidable.

My battle with Hodgkin’s, along with the many serious late effects that I have to deal with, some on a daily basis, have taken “survivorship” to a whole new level.  From the day I finished my treatment, I learned that I will no longer pick my fights or challenges.  I will take each and every one with the same ferocity as I did my cancer battle.  I will take on employers, public figures, and have done so, with the frame of mind, “you will not beat me.”

And if there is anything I want people to know about me… I WILL NEVER GIVE UP!!!

When The Shoe Is On The Other Foot

I have spent over half of my life, fighting cancer.  Sure, the physical battle itself, lasted roughly three years.  But the fight has gone on, and notice, I do not use the past tense, because there are so many elements that remind me, I am still fighting cancer today.  It may be physically from the late effects of the treatments used decades ago to treat my Hodgkin’s Lymphoma.  It may be emotionally as I struggle with PTSD and survivor guilt.  It may be because of the powerlessness I feel, unable to help others get to the point of survivorship that I have achieved.

There are categories of people in the world of cancer.  Patients.  Survivors. Caregivers.  Family.  Friends.  Patients are exclusive.  Survivors are exclusive.  Family and friends are other defined groups.  But caregivers are broken down into various subgroups:  doctors, nurses, techs, counselors, volunteers, and so on.  For over 27 years, I have been involved in all of these groups of cancer.

Being a patient, was fairly obvious what was of most important to me.  Getting through the entire process, from diagnosis to treatments.  Being a survivor, making sure that I followed through with the protocol for my survival, something I only learned about nine years ago, that this was something that I would have to do the rest of my life.  But as a friend, or a family member, it can often be confusing, and frustrating to know what is needed of us to not only get our affected friend/family member through the ordeal, but what to do, when experience tells us that something does not seem right and not being able to convey or communicate our concerns, or is it even our place to  do so.

This occurred, when my grandmother had been diagnosed with ovarian cancer.  I stood in her hospital room with the surgeon and our family, as the surgeon explained that “all the cancer was removed.  We do want Emma to undergo some preventative chemotherapy, perhaps about 12 cycles.”  Having been through chemo myself, including a “preventative” regimen, something was not adding up.  12 cycles was going to be a full blown treatment regimen, and for someone who was in her 80’s, this was not going to be an easy thing for her to tolerate.  Something was wrong, and I knew it.  But I could not convey to my family my concern.  In my heart, something was wrong.  And in fact, a month later, as she was about to begin her chemotherapy, the day before in fact, she passed away.  While I am confident, the speech from the doctor was ordered by my grandmother so that we would not worry, I was no less frustrated that my family could not see my concern.

I would face this type of challenge again, this time with my first father-in-law who had been misdiagnosed with Alzheimer’s.  I believed it to be a medication issue, when I over heard a nurse comment on his low blood pressure, and then proceed to give him his blood pressure medicine anyway.  Research by me would reveal the possibility of delirium due to his medication.  Instead, the doctors and family pressed on with Alzheimer’s.  Three years later, and being confined to a nursing home on psychotropic drugs to keep him sedated, some how, he had enough inside his thoughts, to quit taking all the medicines.  Long story short, within a couple of weeks, his thoughts would completely straighten out.  And he would have no memory of what he had been through.

Having been through so much with family, friends, and knowing so many other cancer survivors and patients that I had counseled, is what you would think, would have prepared me for the biggest challenge in my life.  So much so, even my father felt so.

When it first became suspected that my father possibly had lung cancer, he wanted it kept quiet until he was ready to discuss it with everyone else.  Only two of us, my brother, his wife, and I would initially be told.  But my father had asked something of me, I would never have thought I would be in the position of being in, to be his medical proxy.  He felt that with all of my experience, I would be able to explain everything to him, would be able to help him assess everything, and make sure everything was done right.  I assured him, that I would make sure everything went the way it needed, and he would get all the care that he needed to get through this.  And having been around the cancer world and dealing with other medical crisis, I knew that I could not, and would not let my father down.

But from the diagnosis, to the surgery which was supposed to take care of all that was necessary to treat the lung cancer, things got very complicated, very quickly.  His recovery from the surgery did not go smoothly, and was later discovered as I brought to the doctor’s attention, my father had two strokes.  Then chemotherapy was ordered, and radiation was ordered as well.  The cancer was out of control.  He would eventually be told he was terminal.  My brother had already been appointed his legal guardian, and I remained my dad’s medical proxy.

The cancer would eventually spread to his brain.  This complicated a lot of discussions and feelings with family members.  My father had made it clear, what needed to be done, and what he did not want to happen.  And as I wrote yesterday, I gave my father my word, that I could make sure that his wishes were followed.  Having witnessed before the stages that my father would go through, I knew what to expect.  What I did not expect, was how the family would react.

My dad made it clear.  He did not want to suffer.  And while he had very clear moments of thinking, there were other times his thinking was clouded, nonsensical, and often times, very confusing.  The problem was, he could be very convincing even during these periods.  But for those who had never been in this type of situation, all they could see is the person they knew their whole lives, scared, wanting help at all costs.

As my father’s health rapidly declined, desperation set in by some family members, searching and believing in other possible options, even a last minute “clinical trial” for those in late stages of aggressive lung cancer.  What I could not convey to them was that my dad was not a candidate for that, because of the late stage and current status, not to mention his compromised health with past issues.  I was blasted for not even trying or fighting for it.  But as I was dealing “emotionless” with my father’s needs, I knew an effort like that would be futile.  I had to concentrate on my father’s immediate needs.  I had to make sure that he remained comfortable.  I had to make sure that the staff was responding to my dad when needed.

At times, there were even petty arguments over the care of my father.  I was often described as cruel because I would not allow my father to have certain things, even though he was dying.  A simple can of Pepsi was a lightening rod.  But what I could not convince everyone, was this, he could have the Pepsi, but it had to be caffeine free.  But my dad did not want caffeine free.  But regular Pepsi would keep him awake, wandering the halls, all through the night.  And of course, with a limited nursing staff, this had created all kinds of issues with a full building of patients to deal with overnight.  Though most staff in a nursing home clearly care about the patients, their patience can wear thin, especially in the overnight hours.  And I did not want that to have an affect on them, or how they might treat my dad.  Shit, if that Pepsi was important, I may as well have let him have his cigarettes too.

But tensions continued to rise.  Family members wanting to make certain arrangements, which clearly were not allowed by guidelines of the nursing home or hospice.  And the fact that I defended the home and hospice made me some sort of ogre.  How could I be so cruel to my father?

After my post yesterday, you know the answer.  I had to.  He asked me to make decisions for him, to make sure that he did not suffer.   That he would not suffer.  Even something simple as having to discontinue his medications I was seen as if committing murder because I did not fight for him to receive those pills.  And if he became sick, like the flu, he would not be treated.  That is how it is in hospice.  Why treat someone, make them healthy, just to die that painful death that is going to happen?

I spent every possible moment I could with my father in those last few months, as well as being his caregiver.  I would often be with him in the overnights, just to make sure that I could help if he needed anything.  I did what I could for my father, because that is what he trusted me to do.  And I kept my word.

But as I said yesterday, as hard of a loss as my father was, I still have not been able to grieve for him.

Tomorrow marks the third anniversary of his passing.  And the pain of his loss still hurts today.  And that is why I cannot grieve.  That pain is all I have of him.

My Biggest Fault – I Cannot Grieve

Something happened when I was twelve years old.  It had an dire impact on me, changing my life forever, and how things affected my life.  Combined with future events in my life, this “defense mechanism” that appeared, was then complicated with PTSD (Post Traumatic Stress Disorder) and what is commonly referred to in the cancer community, “survivor guilt.” For those that know me, have seen the late effects of this issue, and for those that have only seen the effect of those events, are often left to shake their heads in wonder.

I have no emotions.  Well, not exactly none.  But when it comes to crisis and tragedy, I show nothing.  I cannot explain why.  And I know it is not healthy.  While from an emotional standpoint, it is clearly not healthy, situations that I have been involved with, not dealing with emotions allow me to process things more clearly, logical if you will.

That winter, I had just turned 12 years old.  And just days later, in between the Christmas and New Year’s holidays, I would lose three close relatives.  It is hard enough for a child to deal with the death of one relative.  But three in less than five days, with subsequent funerals, were definitely overwhelming for me.  And no one could see it.  From that point on, “death” was just something that happened.  We move on.  I do recall crying at the first funeral, confusion during the second.  But by the third funeral, I felt nothing anymore.  This defense mechanism was firmly in place.

I will say that this defense mechanism has been pivotal however in certain situations of my life.  But by the same token, the price my health has paid, both emotional and physical, has been high.  Relationships.  Stress.  Guilt.  Physiology.  I am riddled with scars.

When I was diagnosed with Hodgkin’s Lymphoma, that very defense mechanism left me no room to believe nothing less, than I would be cured.  Any negative possibility.  The barbaric testing and treatments would not deter me.  I was not scared.  I was not sad.  Sure, I dealt with some initial anger at first, until the mechanism kicked in, reminding me that I needed to be focused, to get through this.

Years later, one of the most influencial people in my life passed away, following her diagnosis with a second cancer to have dealt with.  With no emotion, I concentrated on getting my grandmother all of the help she could get, because I believed just as the first cancer she dealt with, we needed to stay focused on what needed to be done.  Unfortunately, she knew something I did not, and that was by design.  Her cancer was terminal.

The thing about my grandmother, she taught me, “take care of others before yourself.  Do not be selfish.  Be selfless.”  The day before she died, I actually visited with her.  Something was not right.  She did not have her focus as I had seen other days before.  She did not talk about what was on her mind, other than she was to start chemo in two days.  She had even gotten her hair cut short to prepare for the eventual hair loss.  The next day,  I got a phone call that she had been taken to the hospital, for fluid in her lungs.  I knew this was not a good thing, and I urged her that I would be on my way.  However, she knew that I was working with a group of children in our church youth group.  She knew what I was doing was important to the children, and important to me.  And this made her feel good.  She told me, my place was there, and she would be fine.

And so, I went through the day, figuring I would just go straight to the hospital after the event.  Instead, a phone call came to the church, answered by one of my assistants.  She was in tears as she handed me the phone.  I do not even remember the conversation.  I know that my grandmother had died.

That mechanism was now working very hard to squash the grief of the greatest loss I had experienced in my life.  I hung up the phone.  Walked passed my assistant, who I remember telling me, that she would handle everything.  Yet, I ended up back with the children, and at the conclusion of the event, went to the hospital.

This issue that I have, would become an even stronger force, as friends and relatives came to the funeral.  Sure, I heard all kinds of wonderful stories about how wonderful she was, and what myself and her other grandchildren meant to her.  Not one emotion.  Instead I was focused on how I was going to get on in my life without the person I considered my “moral compass.”

Several years later, this issue would be recognized again, but this time for the good.  My first wife had been in a head on car collision.  Of course I was attending another youth event that I was running.  But this time, my advisors insisted I leave.  I arrived at the hospital to hear everything that was going to be done to save my wife.  After talking to the doctors, my attention turned to “what’s next?”  I had to contact my employer, her employer.  I had to get to what was left of the car and see if I could get her belongings.  But when I saw the car, my focus was even stronger.  I pulled out my camera and not only took pictures of the car, but then travelled to the accident scene and took more pictures.  It was good I did.  The driver that hit my wife, was uninsured.  And those photos would be used in court.  Of course there was nothing but focus on my wife’s recovery.  My mother made the comment to me, “I don’t know how you are holding yourself together.”  Because I had to.  I did not reach out to anyone for help.  There was no time to be upset.

Unfortunately, these types of scenes would pop up again and again, complicating my PTSD and survivor guilt.   But by the same token, it is what got me through my most difficult times.

And with that, my biggest fault.  I do not show my emotions.  I do not release my emotions.  I do not grieve.  For over thirty five years I have been this way.  I am not proud of this “coldness” I present.  But when this defense mechanism continually assists me to get through every crisis and tragedy I face, I cannot fault this mechanism.  Many, if not most would strongly feel that the way that I deal with things is not only wrong, but unhealthy.  And therefore, jump to their own conclusions and alternative theories as to why certain things play out with me the way that they do.

At this time of year, I am reminded of one of my most painful moments, facing yet another tragedy.

2013 was a horrible year for me, but 2014 would prove even worse.  And in late May, my father’s health would turn rapidly, as he struggled against lung cancer.  At the same time, I was dealing with health issues of my own.  And I was dealing with issues surrounding my divorce to my second wife.  As my father’s health began to fail, as my closest confidante, my dad knew everything that I was dealing with.  But once he was declared terminal, I stopped burdening him with most of everything I was dealing with.  But there was one issue that cruelly, was going to be my most difficult matter yet.  Much too lengthy to explain in full detail in this already lengthy post, due to one of the legal issues concerning my divorce,  I was not only faced with the possibility, that I would not be there when my father would eventually pass away.  And that is exactly what happened.  I was only able to stay with my father until the last possible minute, by his death bed, where if I chose to ignore what needed to be done, I stood the extreme possibility of facing legal sanctions.  I said “goodbye” to him, knowing full well, I would not return in time before he passed.  No emotions involved.  I did what I believed I had no choice to do, and my father previously had discussed the likelihood of this situation with me.  The phone call came several hours later.  He had passed away.

These are just some of the situations that I have dealt with over the decades.  Some, have been within my control, and many have not.  But this defense mechanism that remains strongly entrenched in who I am, is what gets me through every day, staying focused on what I need to do, to make sure that things are done, and done correctly.

Perhaps someday, that day will come, that I can mourn.


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