Paul's Heart

Life As A Dad, And A Survivor

Not The Reaction I Had Expected


Have you ever had a doctor yell at you?

I have had plenty of doctors give me lectures, and even my primary care doctor of thirty years has expressed frustration with me as her patient when I contradict the advice she feels is best for me.  But I had never had a doctor actually yell or scold me before.  And the strange thing was, it had nothing to do with my physical body, which given all the health issues I deal with, would have at least had some grounds to do so.

No, it was something that I had said to him, that set him off.  By the time he was done with me, I realized that I had deserved it.

In 2008, following my emergency heart surgery, and upon learning that I had many other issues related to the cancer treatments that I received back in 1989 and 1990, I became a patient at the long term survivorship program at Memorial Sloan Kettering Cancer Center.  I saw several different specialists to deal with all the things that had been discovered.

I was seeing the doctor I have been alluding to for a couple of things, issues related to my lungs and my immunity, and more importantly, pain.  I had made several appointments previously with him, and all seemed to go well.  Physical therapy was prescribed, and so were several medications.  The source of the pain was permanent damage.  The whole point of dealing with the pain and muscle issues, was more about management, quality of life.

For most of my fellow survivors, it is hard enough finding help to deal with issues that the common doctor does not understand, because they never learned about long term side effects from chemotherapy and radiation therapy, because, well, cancer survivors were not expected to live that long.  At least that is the way it seemed.

So, if like me, lucky enough to find a doctor that understands, and can help us to understand what we are going through, that is half of the battle.  The first thing the doctor did, was point out everything he knew.  Much of it, did not even require any kind of diagnostic tool like an x-ray.  The damage from my radiation therapy nearly twenty years earlier was obvious from a head that hung forward (I was often accused of walking like I was depressed) and though both of my shoulders had visible signs of muscle loss, the effects on one shoulder were far worse than the other as the resulting unevenness of both shoulders.  He ordered some lung testing including x-rays and pulmonary function testing, which revealed issues as well.  The only thing left for him was “quality of life” issues, pain and sleep.

From the very first appointment with him, just like I had heard from my other doctors, I was simply too hard on my body, physically and emotionally, for as compromised as it was.  My late side effects are progressive in nature, only going to get worse.  Which meant my pain levels, and my inability to sleep, would have to be managed.  And refusing to ease up on my work load, led me to end up on one opiode prescription, then a second, and a third.  Even on three different prescriptions, by the end of my work day, my body was in so much pain, I would add a sleep aid, which also gradually increased until finally on the maximum dose, which should have kept me asleep for twelve hours, only last for two hours.

From a patient standpoint, I was doing everything I could, and my doctors were doing everything for me.  But at a follow up with this doctor about a year later, I responded to a question my doctor had asked me, and his response to my answer involved “lighting my ass on fire”.

“So, how are you today, Paul?”

“Pretty much the same, perhaps maybe a little worse.  I know that I am struggling emotionally right now with all the limitations that are happening with me.  It doesn’t seem either that I am getting any relief from the meds anymore (clearly a concern of addiction and tolerance, after all, I was on four very powerful meds).  I don’t know doc.  Maybe I just need to accept what is happening to me, let it take its course.  I should stop complaining about what is happening.  It was the deal I made voluntarily when I agree to treat my cancer.  Even though we didn’t know this could happen, this is the price I ended up paying for my cure.  I could have just not gotten treated and let it run its course.  But I made this deal.  I deserve the issues I am dealing with.”

“How dare you?  I have never had a patient tell me that they deserve what side effects that they are facing and it is not right for you to be doing it either.”  His lecture went on for quite a while.  I was being scolded, but not in anger.  And it was not his feelings either that he was throwing at me.  He was concerned for me, realizing that I was clearly at a turning point and he needed to get me back on track.

When I say that I am blessed to have the best doctors, I do know that I do.  I continued to see him for several years until he left for another practice.  I recently saw him a few months ago, via a webinar, and he was glad to hear from me.  Even better, as my issues continue to progress, I have been able to improve my quality of life.  Major lifestyle changes have given my body physically and emotionally the breaks that it needed, to the point, I am no longer on those medications that only masked the pain and sleep issues, not resolve them.  I still deal with pain, but pain that no longer keeps me awake, and pain that I no longer allow to get to a point that I cannot take it anymore.

I have never had a doctor yell at me like that, and honestly, I do not ever want that to happen again.

My Father’s Ghost


Father’s Day is this weekend.  And like many, it can be a weekend of mixed emotions for any number of reasons.  For all of us, we all have a father or have had one that we will either visit or remember.  And for many, we are now in that position ourselves, of being a Dad.

This is one of the few photos I have, with me and my father.  Compared with the plethora of pictures I have of my daughters and I, though they are annoyed by my insistence of these memories, it is easy to understand my behavior.  I do not have many memories of my father in my childhood either, a by-product of divorce during the 1960’s and 1970’s.  And sadly, this situation has not changed much at all in over fifty years.

A divorce has always been between a husband and wife.  Prejudices which have existed for decades, discriminating against, and taking away the rights of parents, generally the fathers, are still strong, though a movement has been occurring through the country, finally recognizing the importance of 50-50 shared parenting as being the presumed starting point of custody in a divorce.  But this post is not about slamming the court system, honestly, it would take several to cover everything.  It is not about ridiculing the custodial parent either.  I receive so many messages from parents, fathers and mothers, seeking advice on how to proceed with an array of issues they face.  Again, I could do several posts on their stories as well.  Of course, I will not make any reference to my own situation other than what I have already done, that I am a divorced father of two wonderful children.

I do not know the circumstances of the divorce between my parents.  All I know is I was just a toddler when it happened.  It has been suggested to me, that I should know the reasons, as if that would help me with any relationships that I have.  Um, okay, maybe.  But perhaps it might just make things worse for me, messing with a rabid dog that has been lying sleeping for fifty years.

Instead, at least as of late, my focus has always been on decisions and choices that my dad made, following the divorce.  First, pretty easy to write about my father and my childhood in one paragraph, because that is really all I remember.  I have a memory of a beach and my dog with my dad.  I can remember two visits for soft serve ice cream following a visit.  I can remember the three places he lived after my mom.  I remember a couple of trips to my stepmother’s family farm.  And though I do not know the details of the custody order, I do know, in the beginning at least, I only saw him a few hours, every other Sunday, 6 hours a month.  And he only lived a few miles away.  I have been told he was able to see me in the middle of the week as well, though I never, and I mean never, did.  Soon, even those short visits would even fade away by the time of my teenage years.  And then I threw a gauntlet down at my father, that if he failed to attend my high school graduation, I never wanted to see him again.  He never showed.  I never even received a phone call, which of course was not unusual as I never heard via phone for even my birthdays.

A number of years would pass.  But our paths would cross during a family event.  My father came up to me, and asked if we could talk.  I had nothing to say, but I am always respectful, so I obliged.  He was remorseful for our relationship, though offered no reasons behind the things that he had done, um, rather not done.  He stated that he wished he would have done things differently.  At that point, all I heard was “blah blah blah.”  My past was over.  I had moved on with my life.  But then he asked if we could talk some more, when the timing was more appropriate and less public, even though we were among family.  Clearly, he was looking to establish a relationship with me again.

“Look, I appreciate you apologizing to me.  And sure, we can talk some more.  But you need to understand.  I don’t need a father anymore.  I needed one a long time ago.  I don’t need one now.  But I can always have someone else to talk to.”

My father knew the hurt that he had caused me.  And several years would pass, all the while we did have conversations with each other, but never about the time we lost.  I did not want to hear it.

Tragedy would strike that would change my father and my relationship with each other, and how we looked at each other.  A few nights before Christmas back in the 1990’s, my stepmother was hit by a car, crossing the street.  My father had witnessed the impact.  As she was being cared for, my father reached a crossroad in his life, that finally put us back on the path to being father and son again.

My father had pulled me aside, wanting to talk, I mean really talk, about everything, well almost.  They were having an argument that evening, and had some last minute Christmas shopping to do.  My father left the house, crossing the busy street himself in a huff, from the argument.  She would follow moments later, not seeing the car that hit her.  My father felt fully responsible for that accident, perhaps even more so than the individual that hit her.  And he told me that in those words.  At the least, had he been walking with her, as would have been normal, it would have been him taking the brunt of the impact, and not her.

I wanted to assure him that was not the case.  Our relationship had grown a bit, and we could have regular conversations, though still kept them fairly platonic.  But my father was facing tremendous guilt, and that became obvious, very quickly.  He began to rattle off all of the things that he wished he could have done differently, including my childhood, and just several years earlier, for not being by my side as I faced cancer.  He did not blame anyone else for his decisions, he took all the responsibility himself.  So, other than his evasion of my cancer journey, I know nothing about why he made the decisions that he did.  Only that he made those decisions, he felt he had paid for those decisions, and that he deserved anything that happened to him because of that.

That moment changed father and son forever.

We grew close again.  As I said, I was not interested trying to restore my childhood.  I could never get that back.  And several years later, my father was given an opportunity, to him, the opportunity of a lifetime.

We knew he could never give me my childhood with him back.  But he would get the next best thing, being a “pappy” to my daughters.  I got to see what my father would have been like, by watching the interactions with my daughters.  Sure, he had other grandchildren by that time, but this was about he and I, and turning another page.  My daughters loved him, and I made sure he knew that every day I got to talk to him.

The first thing my daughters knew about him, was the huge porcelain “oreo” cookie jar that was waiting for them, filled with cookies, just bought prior to their arrival.  And there was also the huge fish aquarium that my father had, my daughters were always entertained by those fish.

Again, I have no idea what my dad would have been like as a father.  But as a grandfather, he got those opportunities that he had denied himself.  I had no problem with him “watching” them for a couple hours if I had to do something without my daughters.  But an opportunity had come up, for an overnight visit, which I had never given much thought to.  I just did not see him in that position of more than a few hours, responsible for multiple meals, baths, and bedtime, oh, and entertaining them all those hours.

He jumped at the opportunity, only to realize early in the morning, and I do mean really, small children have their own schedule.  And my younger daughter, known for her lack of sleeping full nights, rather surviving on power naps, had woken up around 4am, found a flashlight, and had begun to patrol his house shining the flashlight all over the place.

I received a phone call that morning, around 6am.  It was my dad.  He asked how my evening went.  I told him I had a good time, and was very appreciative that he watched the kids that night.  I had enjoyed the company of my friends that prior evening, perhaps a little too much, but it was a fun night.  “So, when are you coming to get them?”  My eyes now fully popped open, to see the crack between the curtains showing it was still dark outside.  The sun had not even come up yet.  “Dad, what time is it?  Is everything alright?  Are they upset?”  Then he informed me of my “nightstalker” daughter.  I laughed, and then realized my dad wanted some more sleep.  But he would have to settle for a nap later that afternoon.

Sadly, by the time we had grown so close, not just as best friends, but as father and son, he was diagnosed with lung cancer.  I won’t repost that story here, you can look at my “pages” section for “My Dad Was Just Like Me” or actually watch the story as it was performed live in a stage reading in NYC, by going to Youtube, putting my name and “My Dad Was Just Like Me.”

That second chance that he and I gave each other made a huge difference.  I never married with the intention of getting divorced.  But I promised myself, and my daughters, that I would not do as my father had done.  Our situation is not ideal by any means.  But I do my best to make sure that I have stayed in their lives right from day one.  There are things that I learned from both relationships with my father, I cannot get back the time that I lose with my daughters when I am not able to see them (for whatever reason).  I want to be in their lives.  I want to be their role model.  When it comes to their futures, whether education, career, family, I want them to know that they can count on me for any guidance they want or need.  I want them to know that I love them with every beat of my heart and miss every moment we are apart.

And finally, I want them to be able to tell their own children, of the fun memories that they had as a child with their father.  There are plenty of pictures to show them.

“All” Is A Distraction


These are such stressful days.  I am going to do my best not to make this a political post.  Because at this point, our leaders in politics are not helping, AT ALL!  This really falls upon each and every one of us, to make the difference, to take the steps toward recognizing that all lives really do matter.  And I did not put that phrase in quotes, because it does not need to be quoted.  It should be a way of life.  And while we can say it, while we can live it, we need to have everyone understand why we are not at that place right now.

Now, I need to stay in my lane here.  I am not black of skin color.  So I cannot even begin to know how many, if not all, are feeling right now with all the violence being inflicted upon them, unnecessarily, and all too often, fatally.  I have many friends of all colors, the majority of those colors being black.  Again, I am going to stay in my lane.  I know what I have seen, heard, and read.  I have made my mind up on my own, not what media or groups want me to see and believe.  All lives do matter, again not in quotes.  But that also means that has to include black lives.  And as long as our society stays complicit in its tolerance of racism and white nationalism, too many are willing to express all lives matter, but they actually mean “except blacks.”

Before I go any further, I am going to get into a lane that I know all too well, and this will help me to explain and prove my point mentioned above.

All cancers matter.  Of course they do.  But there is one organization that will tell you that all cancers matter, but if you get specific about a certain type, like mine, you would find yourself disappointed to find out, that your type of cancer, or in my case, Hodgkn’s Lymphoma, does not matter enough to be included in their mission.

I learned this reality several years back.  Being a cancer advocate for thirty years, it was just something that I took for granted.  But several years ago, I discovered only certain majorities of cancer mattered to their organization:  breast, colon, and lung, the big three.  Of course, that led me to the Leukemia Lymphoma Society, because they represented my type of cancer specifically.  But now, I found myself, being pulled in two different directions.  Of course I cared about other cancers.  I had five other family members die from cancer, one of those had two different types of cancer, and another had a relapse.  But I also needed to focus on the organization that I relied upon for my cancer, especially realizing that I was not going to get any support I needed for my Hodgkin’s.

All cancers do matter.  I know that.  But it is not only understandable, but okay, for my cancer to matter more to me.  Hodgkin’s Lymphoma is a rare cancer, but I need you to know it matters just as much as all of the others.  But you will never know about my struggles if all you hear is “all cancers matter.”  I need to make you aware of the cancer that I deal with.  That is why, “Hodgkin’s Lymphoma matters.”  That statement does not take away from the needs of the other cancers.  It is an awareness.  And that awareness would get lost if it were not announced by itself.

So there are all kinds of cancer movements or specific activities, Relay For Life (all cancers… sort of), Light The Night (for Lymphoma and blood cancers), Making Strides (breast cancer).  But as a cancer patient and survivor, you will never hear one of us at any of these events, protesting about an “all inclusive” demand to be recognized.  We know what and who we are participating for and with at these events.

Which brings me back to “Black Lives Matter.”  No one can deny that “all” lives matter.  We are human beings, whether with religious beliefs or not.  But right now, there is just something so awful going on in our society, and in my short lifetime, I have been witness to too many horrific incidents against black lives.  And I have seen all too often the aftermath as the black population tried to bring awareness by themselves, only to be misrepresented in history as thugs and destructive vandals.  And currently, because of our current leadership, politics now plays a role in this “disease”, and that is exactly what it is, because by making all of us aware of blatant racism, it is somehow perceived that it is an attack on that leadership, which of course brings out all of the other “lives matter” mantras, in hopes of drowning out the “Black Live Matter” cause, a shiny object if you will, a distraction.

I do not know what it is like for a black person to be approached by a police officer, even if the officer is just being friendly, just to say “good afternoon.”  I am starting to see it now, with one particular incident standing out way before the murder of George Floyd.  His name was Walter Scott.  He was pulled over for a traffic violation.  But as he had a concern about law enforcement, he made the decision once he got out of his car, to run.  Unarmed, he was shot in the back by an officer claiming self defense.  This scene plays out too many times, yes, most recently with the murder of George Floyd, and already more have occurred.

I support the Black Lives Matter movement.  Any other reference to them other than a peaceful protest is nothing more than a dog-whistle distraction to call out antagonists to commit acts that would dishonor the intentions of the BLM movement.  There is a big difference between a peaceful protester and a looter/rioter.  They are not the same.  The first amendment guarantees the right to peacefully assemble and protest.  It says nothing about restricting or defining what a peaceful protest is.  It cannot be helped if you do not like the language, the message, or the volume.  Those things make no difference in making it a peaceful protest.  And I do believe everyone matters.  But right now, this is their cause.  I do not know what my black friends are going through, but I understand it.  And I support it what they are doing.  And hopefully different than what I witnessed in 1992 with the LA riots following the Rodney King injustice of the five cops being acquitted of brutality which was witnessed by the world, I am hoping this finally brings the changes necessary to make sure that everyone matters.

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