Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Inspired By…”

What’s In A Name?


I do not remember much from my days in English Literature in high school decades ago.  But the one thing I do remember, is a line from William Shakespeare’s “Romeo And Juliet,” “a rose by any other name”.

My duck analogy is one that I prefer to use.  More current.

So, this morning, I was reading my newsfeed, when an interesting topic came across.  The writer questioned about doctors now using a term NED as opposed to telling a patient that they were in remission.  I questioned that I had no idea what NED had meant, though I took a shot, asking “does NED stand for No Evidence Of Disease?”

When I finished treatments for the second time, my oncologist said to me, “I don’t like to use the word ‘cure’, I just say ‘remission.'”  I thought that was an odd thing to say, because I remember participating in medical research fundraisers to “find a cure for cancer.”  Wasn’t that the goal?  To be cured of cancer?  Being in “remission” did not sound convincing enough.  Almost like, do you mean it could come back?

Imagine, I am now over thirty years passed my final treatment, and I am not supposed to use the word “cured?”

Then I thought, what if it came back, “perhaps he just did not want the liability, ‘hey, you said I was cured’ and then he would respond, ‘no, I said you were in remission.'”  It really has not meant that much to me either way.  Although, because of my health issues from my treatments, I have found myself stop referring to myself as “cured.”  I have been saying “remission” for years now.

But when I heard “NED” and possibly thinking “no evidence of disease,” I began to think, “wow, that is really a step backwards in the confidence of treating Hodgkin’s Lymphoma,” a cancer with a notorious high success rate with treatment.

Now I find myself taking an even bigger step backwards.  While no one can appreciate the progress in diagnosing and treating Hodgkin’s Lymphoma over the last many decades more than me, because of the post mentioned above, I find myself nitpicking “Hodgkin’s Lymphoma.”

I am not known for my political correctness, though admittedly, there are some things that will strike a nerve with me personally, and I try to deal with it on my own, without taking any form of pleasure from a person’s attempt at humor or satire.  But damnit, in 1988, I was diagnosed with Hodgkin’s Disease, not Hodgkin’s Lymphoma.  I tried to rationalize why this bothered me so much, and even, why was there a need to re-label what did not need renaming.  After all, the cancer is still the same cancer.  It has not changed.

Hodgkin’s Disease was named for Dr. Thomas Hodgkins, who discovered it back in 1832.

Ok.  His name.  He discovered several people with this illness of the lymph system.  But it was named a disease.  I have not researched thoroughly for when the actual word “cancer” was first used, but the concept of cancer can be traced back as far as many years B.C.  As far as the mainstream use of the word, I have no idea when it became prevalent.  Admittedly, I do not care.  I had Hodgkin’s Disease, a form of blood cancer.

But wait, that is another issue that some like to argue.  “Blood cancers are not real cancers.”  Yes, I have actually heard that stupid comment more than my share.  It seems some have a hard time accepting the fact that you do not have to have physical tumors to have something a cancer diagnosis.  Leukemia in its many forms, and various types of lymphomas, are cancers, cancer involving the blood.

Putting the train back on the track, I missed the moment that Hodgkin’s Disease was changed to Hodgkin’s Lymphoma, literally everywhere, even in the books.  It is still the same cancer.  Somewhere around the turn of the century, and I have not been able to see any reason as to why, but Hodgkin’s Disease was informally changed to Hodgkin’s Lymphoma.  Admittedly, lymphoma sounds less nasty than the word “disease.”  “Disease” would also imply contagious.  It was bad enough through most of history, people actually believed that cancer was contagious.

Maybe it being called lymphoma not a bad thing after all.  But I worked too hard to just be told “no evidence of disease.”  I earned the right to be told I am in remission.

A Christmas Eve Story Never Told


I grew up estranged from my father most of my childhood, following the divorce of my parents.  The history is not relevant to this story other than it happened.  As I got into my teens, the “attitude” that I had against my father grew to the point he had been told, “I never want to see you again.”  At age 22, I was diagnosed with cancer, Hodgkin’s Lymphoma, he was nowhere to be found.

And it stayed that way for several years.  Were it not for the gesture of my younger sibling, it would have been forever.  My father was going to get married and he must have told my sibling, it was important to him that I be there.  Ironic, since when I laid down the ultimatum at him, the final event of my childhood, high school graduation, he was a no-show.  But my sibling was adamant that I attend the wedding.  Even a few close friends of mine that I had confided in, encouraged me to attend.

Reluctantly, I did go to the wedding.  He and I did not talk through most of the evening.  He finally approached me.

“Thank you for coming.  It means a lot to me,” he said.  Means a lot to him.  Fuck him.  Where was he when I needed him?  I was there for my sibling.  “I want to talk to you.  There are things I want to say to you.  Tonight is not the night, but there is so much you do not know.”

That night changed everything.  Spoiler alert, when my father passed away several years ago, he still had not spoken of “the divorce years” or those that followed.  But a door was opened that evening, and I really do not recall having any meaningful conversations about “the past.”  The conversation just move forward, as if forgetting the past ever happened.  Something I swore would never happen.

Fast forward sever years later, my phone rang.  It was December 23rd.  There was a horrible accident.  My stepmother was crossing the street in front of her house and had been hit by a car.  All I was told was that it was real bad.  My wife (for clarity, 1st wife) and I rushed to the hospital.  Injuries were not fully explained, but the ones that were known, were serious enough.  How did she ever survive the impact?

My father and my stepmother were having an argument, I believe over an auto insurance issue.  Agitated, there was still some last minute Christmas shopping to be done.  My father, in a huff, told my stepmother he would wait for her in the car.  Waiting impatiently, he kept looking across the street to the house, to see when she would exit.  Focused on her, he watched her lock the door, come down the stairs of the outside porch, to the sidewalk, and into the street.  It was now dusk, so cars were using their headlights, except, for one.  As my stepmother had now crossed half-way across the street, it was then that my father saw the car, with no lights, in his side mirror.  And then the impact.  I will not describe how he explained what he witnessed.  Trust me, it was awful.

Time seemed to drag through the evening as answers were so slow coming out to us with any encouraging news.  My father, a smoker, had not had a cigarette in hours, finally needed one, and asked me if I would go out to the parking lot with him, keep him company if you will.

It was 2:30am, Christmas Eve.

“I’m sorry,” he scratched out with a gruffled voice.  I looked at him confused and said, “for what?”

“I’m sorry I was not there for you when you were going through your cancer.  I just… I just couldn’t do it.”

Now, I was really confused.  Your wife is in the ER, fighting for her life, and you are worrying about something a long time ago.  Focus man!  Don’t worry about me at this point.

“My mom died of cancer,” he started.  I knew of her death, just not why.  “I was lied to.  When she went to the hospital, they told me it was her gallbladder.  But she looked horrible.  And then, she was dead.  Dead from cancer.  I could not get the strength to possibly watch you die too.”

I was floored.  Sure, I had every reason to be mad at him for my childhood and his absence.  But, not being there for me when I was going through cancer, was unforgivable.  Clearly, my judgement and sentence on him was too harsh.  But how was I to know.  He never talked to me.  Until that Christmas Eve morning.  And now, it was making sense.

My father was experiencing something really only portrayed in movies such as “A Christmas Carol” or “It’s A Wonderful Life.”  It was a moment that changed us both forever.

There was no way of knowing if my stepmother would survive the night, if at all.  The last conversation that he had with my stepmother, an argument, that may never have the chance to be resolved.  He felt guilty about that, extreme guilt.  And then it became obvious what was happening.  That moment was so much more than that.  It was then that I learned, my dad carried so much more more guilt, and so did he, unbearable guilt.  He needed to unload what he could.  With me, he was able to do just that.

He only had one cigarette during that conversation, but the time was now 3:15am, when we headed back inside.  The chaos surrounding my stepmother’s condition, did not allow me anytime to reflect on what had just happened, or if it had even made a difference to my father.  Because once back inside the hospital, the focus had to be on my stepmother.

It was a long road, and she never did fully recover.  But my father made a decision that to this day, is why I consider him one of the most admirable men I will ever know.  The secrets he kept from me, to protect me, many likely died with him.  But others, I could see why he did what he did.  For several years, my dad took care of my stepmother, eventually she outliving him, something none of us would have ever suspected.

In my years of survivorship, he was there every time a health crisis came up, and there had been a lot.  He attended both of my weddings, and got to spend time with his two granddaughters that adored him.

I missed having a dad around in my childhood.  We made up for that time in the last half of my life prior to his passing.  Going through my own divorce, with children, I learned how to carry myself, and most importantly, to never give up on my children.

This is the last photo with my dad.  I am glad we had that chance.

For Some, It Will Take More Than Just Getting Through The Holidays


There will be so many this year, who are struggling not just financially or physically with the holidays this year, but emotionally.  For some, it will be about loss.  For some, it is dealing with a crisis of the unknown.  This situation can be something that we have all experienced at one time or another in our lives, but is amplified this time of year.

I am one of those who has struggled through this season, his entire adult life, and most of his teenage years.  I was fourteen when I experienced the greatest amount of loss during the holidays, three relatives (between both sides of the family), between Christmas and New Years.

And then, there was 1988, when I was diagnosed with cancer, Hodgkin’s Lymphoma, right at the beginning of the holiday season.  To complicate that further, being a Christian, my faith had been put to an extreme test, because the one place that I needed most at that time, I was turned away, because there was no time for me because of the busy time of year in the church.

In the thirty years since, it would be easier to list the years that I did not struggle during this season, because I could do it on one hand.

I am not the only one who has a hard time this time of year.  Every year, chances are there is someone in our life, who has is struggling with a crisis right now, or dealing with a loss for the first time, perhaps even recently.  Struggles and grief are hard enough during the rest of the year, only amplified during the yuletide season.

And then there is 2020.   The extraordinary loss of life, and the disastrous results of the economy are hitting us like never before.  For many of us, we know that is did not have to get this bad.  The reality is, it is this bad.  Loss of jobs, income, an empty spot at the kitchen table, forever.

I have been in the hospital this time of year, both as patient, and as caregiver.  Anyone else who has been in this situation, would agree, we would give anything to not be in that situation, especially during this time of year.

And like many, I have experienced loss during this time of year, getting through the holidays without a loved one, for the first time.

I ask that we all keep those in our thoughts and hearts during this time of year.  By all means, celebrate.  But please remember those who are facing difficulties, or loss for the first time, this season.  Wish good tidings of cheer, but also offer supportive words and gestures to those in need.

That is how we all get through these difficult days.

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