Paul's Heart

Life As A Dad, And A Survivor

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.

Dad – The Next Level


I have just returned from a wonderful Father’s Day weekend visiting my daughters.  As I am prone to do, I packed as many things as possible into this one weekend.  As they expected, there would be some adventure, but also a lot of “nerdy” things such as visiting “Dad’s past life” such as my college and the very first radio station I disc jockeyed at (although that was a bust as it was closed for the Summer break – back in the old days, the station ran year round).

As far as lessons in life, I gave my daughters one of their most important lesson, the value of friendship.  As children grow, one of their most traumatic concerns, is losing friends.  This commonly occurs when either moving to a new city or school.  Of course, as parents, we always encourage our children, “you will make new friends”.  But do you have to lose your old friends?

My daughters learned this past weekend, you can keep your friends your whole life.  One of my life long friends, along with her husband, had invited us to stay with them while I was visiting my daughters.  My daughters were amazed that I had remained friends with someone from school, more than 35 years ago.  It was a wonderful weekend all around for all of us, including our hosts.  They enjoyed the company of my daughters who as usual, were on their most polite behavior, something I always instilled in my daughters as always being important.  In fact, there was quite a bit of interaction as we played table games, shared stories about all of us, and my youngest daughter learned a new talent courtesy of my friends, how to play the guitar.

Up to this point, it was just like old times.  Just Dad and his girls, having their typical time together.  Time frozen.  Part of our weekend though would include their request of the weekend.  To go see a movie.  Being back home, I knew just the place to take them, a drive-in movie.  My daughters had never been to a movie where you parked and watched the movie from your car, and the perfect movies were playing at this drive-in, Cars 3 and Captain Underpants.  Perfect.  Under normal circumstances, this is the way things worked.  My daughters make the suggestions, and I work out the details.  This time, they had a suggestion, “The Book Of Henry.”

Both of my daughters were emphatic that they wanted to see this movie.  I had not heard of this movie, so of course I “googled” the trailer.  Based on the trailer, I found myself second guessing if this was going to be an appropriate movie for my daughters.  During the preview, it was clear there were a lot of “grown up” issues being shown, child abuse, possible murder, and who knew what to expect with a movie casting Sarah Silverman (a raunchy, but funny comedienne).  Well, being the nerd that I am, I saw this as an opportunity for what it was, a learning moment.  I was sure there would be questions after the movie, and I was the right parent to handle those questions.

Do not worry, I will not spoil the movie for you.  With a PG-13 rating, the movie was actually geared and targeting young teens.  And the previews of the movie did not disappoint either as far as what I would possibly face discussing with my daughters:  death, child abuse, bullying, single parenting, alcohol, obscenities, and solving problems with violence.  While that list is daunting, it was far from the level of intensity of the Fast & The Furious.

By the end of the movie, all three of us had shared some laughs, and at least one, some tears.  As we left the movie, all of us shared our own view point of the movie, but one thing was clear, we all enjoyed it.  And then it hit me.  This was the first “grown movie” I had watched with my daughters.  There would be no more Toy Story or Despicable Me movies.  I am more than aware of how old they are, but now was aware of how old they had become.

I have now entered the next level of fatherhood.

Post Navigation