Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “July, 2017”

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.

A Celebration For Stephanie

It is hard to believe with more than 300 drafts sitting in my cue, that I would have writer’s block.  So today, I got a huge shot in the arm when I was tagged to a post announcing a major milestone.

It is hard to believe that that time has flown by this quickly, but nearly three years ago, I published a post, about a special guest here on “Paul’s Heart,” titled “Stephanie’s Words”.  You can also find the post under the page of the same name on this site.  Stephanie has just hit her 5 year cancer free mark!!!!!

To put this in perspective, nearly all cancer patients have this number, 5, put into their heads, whether it be by the doctor, employer, insurance, or even a fellow cancer survivor.  Statistically, it is the measure of survivorship as the numbers indicate the rate of survivorship depending on the specific cancer the patient dealt with.

I looked back on the original story that was published (you may go back to the story to see the story, as it was written by Stephanie herself), and having remained friends with her, and her family in the years since, her life is nothing short of miraculous.  As a 27 year survivor myself, I usually draw my inspiration from those who have survived even more years than me, but if you read Stephanie’s story, you will understand and be inspired by Stephanie.

Stephanie not only had great support from family and friends during her fight with Hodgkin’s Lymphoma, but that same support network has been just as critical in her survivorship.  I think Stephanie would agree with me, as most other survivors, life after Hodgkin’s is more than just getting back to normal, or as we are often told, a “new” normal.  We have had to deal with fears of relapse.  There is also the initial “let down” once completing the treatments, which seems odd, but consider this fact.  For a year or two (or more), we no longer have control of our lives, because everything about our body is now dictated by schedules, appointments, and side effects.  And then the day comes, our lives are handed back to us.  And it can be overwhelming.

Just as I have over the years of my survivorship, also from Hodgkin’s (you can see on my “counter” I am heading towards 30 years!), Stephanie has met other survivors of Hodgkin’s as well.  And those that she has known, some have gone through similar struggle, some more difficult (if that is possible to imagine), and some, not so difficult.

Today, Stephanie marks 5 years, CANCER FREE!!!  And I am sure that I speak for Stephanie, in saying that she wishes nothing less than for everyone to not only reach this same milestone, but to go beyond.

And Stephanie, as I am often quoted, “as I continue down the road of remission, I will keep looking in my rear view mirror to make sure that you are still following me.”  I wish you the best.  You have a great life ahead of you, a wonderful fiancé who has been with you the entire time, and that speaks of inspiration itself for all caregivers.  I look forward to some exciting pictures in the future, and will be waiting for each anniversary as you soar towards number ten.

Repeal – Accepting No Less And What It Will Mean

Disclaimer – though this is a blatant political post, I want to stress that it is in no way intended to lean in one direction or the other, insult any of our governmental leadership other than the blatant failure to guarantee health care for each and every citizen of the United States of America.  Health care for all should be a right, and not a privilege simply for those who can afford it.

I belong to no political party as I detest attributes (I will not call them values because I believe most of our representatives value only the money that is accepted by them, from their lobbyists, that normally determine how each will vote.) of both parties.

Now that I have that off my chest, I must say that there appears to be some sort of encouraging news today out of Washington.  Senate leader Mitch McConnell has been quoted that efforts in dealing with health care, may just be heading to a bipartisan effort.  To understand what this Herculean effort means, look at the history.

President Obama approves the Affordable Care Act.  While Democrats do not argue that improvements need to be made to the ACA, over the next 7 years of Obama’s presidency, nothing major is accomplished in doing so.  During those same 7 years, Republicans concentrate only on “repealing” the entire act – no improvements, just complete repeal, and have nothing but empty promises to replace.

Elections are charged up with emotion, both parties running on the campaign promises to either “improve” or “repeal” the ACA, but now the Republican party is offering hints at replacing the ACA, because at this point, even the Republican party can see the same good that has come from certain parts of the ACA, while still recognizing the other problems of the ACA.  But with the election of 2016, one political party has complete control to make everything happen, the Republicans control the Senate, the House, and the Presidency.  Taking care of health care should be a slam dunk with the Democratic party basically having no say in the process.

But there is a group within the Republican party as I mentioned, that sees part of the ACA being a good thing.  It is another group though, publicly referred to as “extreme right wing”, that have put their foot down and said the entire ACA must go, anything less than that, and these certain Senators will not even vote along with their party to “partly” replace the health care bill with another.

Here is the thing.  All Republicans campaigned with the promise of Repeal.  The President ran with Repeal and Replace.  As it stands right now, someone is going to end up breaking their campaign promise.  Even the latest rumor, and actual tweet from the president, “if the current bill is not approved before the July 4th break, then immediately repeal the ACA, and we will replace later.”  That clearly is a broken promise by the president.  But for those who support “repeal now” and “replace later,” they put an asterisk by that comment by saying, the repeal would not take effect for a year to allow time to come up with a replacement.  Well, then that would be a broken promise by the government representatives who promised to repeal immediately (technically by the president also – until he found out how difficult health care was).

If you truly believe that the ACA could be repealed, and a replacement guaranteed within a year, then clearly you have not payed attention to this discussion for the last eight years, especially the last six months.  I also would have some beach front property in Las Vegas to sell you.

I want to make you understand, what is at stake with flat out repealing the ACA, especially without any decent and humane replacement plan.

Repeal the ACA and you…

go back to being discriminated against to qualify for insurance based on pre existing conditions

go back to life-time limits which for many can occur within the first week of someone’s life

higher premiums based on older age

will continue just as before the ACA, with the ACA, and today, to see increased insurance premiums

These four reasons alone are why the Affordable Care Act cannot be repealed 100%.  Just cancer survivors like myself, would automatically no longer able to get health insurance.  Sure, a certain party wants you to believe that pre-existing conditions will be covered, but refuse to accept that allowing high risk rates for us, would price us out of health care, these representatives will simply sit back and say, “not our problem.”

Recently, a story was published about a 3-year old boy, named Ethan Chandra, who had been born with a birth defect called Heterotaxy syndrome which causes a whole lot of complications internally with any or all body organs.  The bill for the corrective surgery for his heart was over $230,000 of which, covered under the ACA, only cost his mother $500.  Clearly, without the ACA, the family would have lost everything, and the child himself had the possibility of nearing  what would have been a lifetime cap.  And while our government argues over the merits of health care being a right or a privilege, even those against health care reform offered absurd and offensive comments directed at this poor child and mother.

Even with a Republican controlled government, I do not see an end to “repealing and replacing” the Affordable Care Act.  Sure, it is great that finally the Democrats may be included.  In all honesty, they should have been working on improvements even under the new president.  But now, if efforts of a bipartisan attempt fail, we may finally have representatives to come forward with the only proposal that will work, health care for all.  If I had to guess, an out of control premium and deductible would be replaced with a tax.  And while no one likes to hear the word “tax”, a set tax rate to cover health care is easily more controlled than greedy insurance companies.

We are the only industrialized country that does not guarantee health care for its citizens, in spite of us having some of the best care available in the world, only if you can afford it.  But no matter what health care bill gets passed, unlike the ACA, if there are problems, passing the bill is not good enough.  Improvements must be made.  So for all that want to point to “wait” times of certain countries, look at other countries who do not have that issue.  The system can work, and has worked with many countries having it in place for decades.

And for those who fear the term “socialism,”  I call bullshit.  You cannot be afraid of providing health care for everyone, yet support the fire department, the police department, ambulance personnel, and a whole list of other programs paid for by our taxes.  The only ones who are afraid of a “socialist” program like universal health care, are the ones that have the most to lose, insurance companies, and Big Pharm.  And just like the debate of legalizing medical marijuana as an option to Big Pharm opioid control, money continues to do the loudest talking from the pockets of our representatives who are supposed to be “of the people”, and “for the people.”

Do not repeal the Affordable Care Act.  Either fix it, or accept that the only humane, Christian (apologies to my atheist friends but unfortunately as one political party hides behind their religion, I have to call out their hypocrisy), and right option, is health care for all.

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