Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Family and Friends”

No Second Chance

It is something that happens all the time, whether married couple, a dating relationship, a sibling rivalry, or even a friendship.  People disagree, argue, or “fight.”  Under most circumstances, actually, hopefully, most of these situations resolve without any lengthy duration or any physicality.  As long as cooler heads can prevail, whatever the topic the disagreement is about, there should be a resolution.

For many, and unknowingly, there could be a time limit.  And there could be a permanent consequence involved.

There is an expression, “don’t go to bed angry.”

A news story from over the Atlantic came across my Facebook newsfeed.  A young couple, with three young children, had a fairly serious argument.  Unable to resolve it, the wife instructed the husband to find some space on their couch for the night.  A situation I am sure has played all over the world time and time again.  Unfortunately, the next morning, she found him the next morning, still on the couch, dead.  There was no foul play.  He had not committed suicide.

There are actually two stories here.  Though the news article did not articulate on the individual issues, just rather the potential cause, and the coulda-woulda-shoulda situation.  So, for the purpose of this post, I am going into the two issues, that possibly everyone reading this post may have been, or may just be in a similar situation.  My hope is that you take what I write to heart.

I first learned of the expression “don’t go to bed angry” more than two decades ago, in a very painful way.  I am not an angry or confrontational person, so it was not something that I had done or said in any of my relationships.  But one December night, my father and stepmother had been having an argument of auto insurance.  They still had some Christmas shopping to do, and right in the middle of this argument, they chose to continue it, while going shopping.  My father left the house ahead of my stepmother.  As he impatiently waited for her, he looked out his driver side window, watching my stepmother finally coming outside, cross the busy street, when suddenly, she was hit by a car.  Long story short, she survived, but suffered serious and life threatening issues, most permanent.  The only good thing for her, she had no recollection of the accident.  She also had no recollection of the argument.  But do you know who did?  Yes, my father.  He would never be able to resolve what happened that night, and would spend the rest of his life carrying the guilt of that night.  So, you see, you do not even have to go to bed angry to lose that chance at closure.

The father as young, only 36 years of age.  The wife was 31.  Together they had three young children.  As a family, they enjoyed doing things with each other, including family vacations.  And just with many families, work schedules play a vital role in allowing recreational activities as well as daily expenses.  But just how many hours per day, per week, per month, depend on your employment, and payroll.  A common argument, the wife complained about the long hours the husband had worked, many times working 16 hour shifts, seven days a week.  You may wonder how is this possible?  Simple, you can either work multiple jobs, or certain employers may offer overtime.

Again, this is a situation similar to my own personal experience.  I am “blue collar” by nature.  Definitely not afraid of working.  At one point in my life, I had been working a full time job, two part time jobs, all while attending college full time.  It was a ridiculous schedule, but when each job was only minimum wage, I did what I had to, to survive.  But later in my life, I was fortunate to land a job that would afford me a salary three times what I had ever made.  Along with that, I would have an opportunity to make overtime.  I saw this as a chance to really make a change in my life from a financial standpoint.  I would often find myself working anywhere between 60-70 hours per week, just so that I could provide nice things for my family, house, car, vacations, etc.

Getting back to the family overseas, their argument had good intentions.  There was clearly concern by the wife.  The husband had come home that evening, as she described him, in the worst shape she had ever seen, from an exhaustion or completely fatigued state.  Every year he had taken the family to Disney, but he was working to take his wife on a special anniversary trip to Prague.  Frustrated by his stubbornness not to take it easy and give himself some rest, she told him to sleep on the couch.  His body could not take the physical abuse any longer.  He died overnight.

Since my diagnosis with Hodgkin’s, my body has sent me three different warnings, that only when I got hit with the 4th warning, I finally listened.  I had cardiac issues that I was aware of for four months, but was more concerned with not missing work.  I was diagnosed with a widowmaker blockage, meaning,  I was going to have a fatal heart attack any moment.  But I kept working.  Then, several years later, not learning my lesson, I ended up back in the emergency room, having run myself down so hard, my body went into full blown sepsis, again, having no warning, other than when my body finally decided it had enough.  Nine months later, another episode with sepsis, promising myself, I would no longer do that schedule, but the pressure to provide the things my family I had always done was immense.  Three months later, another cardiac episode hit, and that was the end.  I was lucky.  I got the chance.  This other Dad, did not.  Like me, all he wanted to do, was provide nice things for his family.  We all want that.

But the human body is not meant to be pushed to such extremes.  The human body is not meant to be starved of nourishment and rest.  The human body is not meant to be abused, intentionally, or in the case of health issues like I have that result from long term effects of cancer treatments.  The body will only last so long.  And while concern may be expressed, if it is dealt with in anger, painfully as this young couple found out, the argument is what the widow will never be able to forget.  There is no second chance.  Once the words are out, the damage is done.  Once the body has suffered to the point of exhaustion, the damage is done.

Ideally, it would be perfect if we did not feel the need to pull the hours that need to be worked.  But no one should ever be faulted for wanting to be able to do the best we can for our families.  But there also needs to be understanding when we can no longer perform at that level, and be able to adjust.  Otherwise, there will be more unhappy endings such as this family must now endure.

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.

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