Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Inspired By…”

Living With Flashbacks


Of the things that I should be able to deal with, when it comes to my survivorship issues, is that of the mind.  Like all of my other issues from when I went through my cancer experience of Hodgkin’s Lymphoma, only I, and my doctors are aware that it exists.

When we hear the term “post traumatic stress disorder,” or PTSD, we automatically just assume that the issue is related to either war time, or an act of violence such as the crime of rape, assault, or murder.  It is expected that survivors of these issues would have a lot to deal to resolve what they had witnessed.

The truth is, PTSD actually impacts so many other people and for many other reasons, weather events and other natural disasters, accidents, and major illnesses just to name some.

PTSD is one of the issues I have carried most of my survivorship of Hodgkin’s Lymphoma, normally in the form of “survivor’s guilt,” which is just as it is called.  I have written many articles on Survivor’s Guilts here and elsewhere.

Flashbacks, or as I call them “daymares” (like nightmares but while awake), are when a particular situation occurs, that take you back to your crisis or event with vivid life-like reality.  For instance…

In 2008, when I “officially” was recognized as someone dealing with late effect issues from my treatments, courtesy of an emergency double bypass via open heart surgery.  You can catch up on that on “Paul’s Heart” under “CABG – Not Just A Green Leafy Vegetable.”

I had been released from the hospital a week after the surgery.  I had placed myself comfortably on the sofa as I was dealing with quite a bit of pain.  My wife (at the time), had resumed her normal activity of watching her favorite soap opera.

The soap opera was “The Young And The Restless”.  The character was Victoria Newman.  Is was late April of 2008.  Considering I do not watch daytime television, how is that for remembering details?  A current plot, unbeknownst to me, had Newman undergoing open heart surgery, that episode.  I did not know why.  I did not care.

I completely broke down.  My ex (as I refer to her now) looked over at me in disbelief, having never really seen me even shed a tear, now completely a mess.  All I remember was just repeating… “too soon, that was me.  Too soon, that was me.  Too soon, that was me.”

PTSD.  From that point on, I have not been able to watch any kind of plot involving heart surgery.

I have witnessed others go through their own trauma, reliving the episodes in the form of flashbacks.

My first ex-wife was in a horrific head-on car collision, trapped on a two lane highway, no where to escape.  Ever since, often faced with approaching headlights, even from the passenger seat of a car, could escalate her anxiety.

My father, witnessed the horrific accident of my stepmother being hit by a car, crossing the street, witnessing the entire incident from impact, to where she finally landed, sadly around this time of year.  How many times on television do you see movies and tv shows, comedies even, do you see people being hit by cars, buses, and trucks?  Too many, especially for my dad.

A year and a half ago, I had my own brush with a crash, my first in my 37 years of driving.  At one of our busiest intersections during the day, late at night, not so much, I was in a left turn lane.  Across from me, was a car, heading straight, south to be exact.  We both had red lights.  And then, my left arrow appeared, her light clearly still had to be red, or so I thought, as she came accelerating at me, in her 2019 Dodge Charger, head on.  As I was now in the middle of the intersection, I had just a moment to decide my fate of the impact, head-on, or quick turn, and if so, which direction, in the event the other driver might realize what was about to happen and turn also.

I turned hard to my left, while the other driver continued straight at me, as if the driver was “threatening me” or “warning me” as if I had done something wrong.  The other car t-boned me, crushing the passenger side of my car, deploying my airbags.  Other than bumper cars at an amusement park, I had never had a collision, or heard the sickening sounds of a car accident.  I was stunned, but was without serious injury.  My car, proudly reliable at over 200,000 miles, was totaled.

I find that I am okay during daylight hours when I have no choice driving through that intersection, even making that fateful turn.  But it is another story at night.  And I can still see it clear as it happened.

Fortunately, my flashbacks do not require much attention, as much as my other health concerns.  But when they do happen, they are just as serious as when they first occurred.

 

Women And Children First, Not So Fast


As the Titanic began to sink, and evacuations became necessary, the cry went out, “WOMEN AND CHILDREN FIRST!”  It was a shout that only a coward of a man would ignore if he chose to take a spot on a lifeboat, denying a critical escape to a woman or child.

In 2009, the United States was hit with a virus called the “Swine Flu”, also known as H1N1.  This new strain of flu, was more deadly than the average seasonal flu.  Its distinction from other flus, was that it was passed from… pigs.

Swine flu earned the status of a pandemic, as it reached all around the world, killing hundreds of thousands of people.  But a vaccine gave hope to get this lethal flu under control.  And when it came time to get the vaccine, a certain group of people were to get the vaccine first, pregnant women, seniors, and those with compromised immune systems.

In 1988, my spleen was removed as part of the diagnostic process for my Hodgkin’s Lymphoma.  Thought of back then as “no big deal, lots of people live without their spleen,” it would eventually come back to haunt me, and millions of others who would now have the status of “compromised immune systems.”  We have no way to really fight off a serious infection and even a harder time avoiding one.  Clearly the priority was real.

I mentioned the groups of people that were urged to get vaccinated.  Clearly, you can recognize the pregnant, and the elderly.  But how do you recognize someone without a spleen or some other compromised immune system?

Can you tell by looking at this picture, I have no spleen?  Or, can you tell any one of the things I have to deal with in regard to my cancer survivorship?  My heart?  My lungs?  My spine?  The list goes on.  By the way, this picture was taken many years ago at Memorial Sloan Kettering Cancer Center, and this is my friend Nick, also known as the “ambassador”, who greets everyone the same way upon entering.

Or is this what someone needs to look like to be considered “sick enough?”

I typically do not cooperate with my doctors and vaccines, and to be clear I am not an anti-vaxxer, I just feel enough has been done to my body.  But the swine flu vaccine was one that my doctors were able to convince me to get.  The risks of not getting it were too extreme.

So there I stood, amongst the bursting bellies and silver hairs, all glaring back at me with disdain likely asking themselves, “what the hell is he doing here?  He looks fine.”  When I say it felt uncomfortable, that is an understatement, but somehow I hung on long enough to get to my turn in the line.

To be fair, I had no I.D. on me that identifies I have no spleen.  I was asked why I was there for the vaccine, if I met the criteria, and then I did what I always do, when I need to “prove” myself… up goes the shirt, revealing an eight inch scar from my belly button to my rib cage, along with a second scar from the bottom of my rib cage to my neck (one was for the spleen removal, the other my heart surgery).  The nurse knew what the scar was for.

But I should not have to go to this length to prove myself, should I?  Just because my shell does not confirm what you feel is your business.

Today, we are dealing with this monster, Covid19.  Never in my lifetime, did I ever think I would see a virus that would kill so many people, especially in the US alone.  When it comes to other illness tragedies, I had only heard about polio from my mother and how bad that was.  And then of course, we learned about the pandemic of 1918.  But this is the first in my lifetime, and hopefully will never happen again.

But here we are again, at the vaccine stage.  Amazingly, we got here at “warp” speed, a reference to Star Trek and how fast their space ship could travel.  And again, as the vaccine is manufactured, administration needs to be determined based on priority, and with the consideration of just how lethal this virus is.

The correct decision has been made to make sure that all medical personnel get the vaccine first.  After all, they are the ones constantly put at risk by innocent victims and arrogant deniers who contract the virus, too many of those medical personnel contracting it themselves, and dying.  The bottom line, without them, we have no one else to take care of the sick.  It makes total sense to inoculate them first.  Afterwards, I believe the plan is to vaccinate the elderly population, a clear and vulnerable sect of society.

And then… the vulnerable.  Those with pre existing comorbidities impacted more severely by the virus, those with heart, lung, immunity, diabetes and other complications, me.  People in my situation will actually be put ahead of women and children, I am sure bringing that uncomfortable and resentful glare once again.

I have not even decided if I will get the vaccine.  It is not a decision I take lightly.  I was subjected to therapies for my cancer, that were not researched for long term effects, which I now deal with today, some, crippling, some near fatal.  And that is the issue I have with this vaccine.  Yes, it is great that they discovered it as quickly as they did, but they know less about long term effects about this vaccine, than they did about my treatments.  I will unlikely spend a lot of conversations with my doctors, trying to weigh the risks for and against.  And I do trust my doctors.  They also respect my concerns.  We will see how this plays out.  But if I do, I dread those glares again, just because I do not look the part.

Double Nickels – What A Ride!


Thirty-two years ago, I was told I had Hodgkin’s Disease (now called Hodgkin’s Lymphoma so it is not as scary sounding), cancer.  I was twenty-two, just turning twenty-three.  When it came to any conversation about surviving cancer, it happened with a time frame, five years.  Statistics on cancer survivorship were based on a magical five year mark.  What happened after that five year mark, we never asked.  And if you were a cancer survivor, we just assumed the risk.  That is, until the internet came along.

Over the decades, I have met so many survivors of not just Hodgkin’s, but other cancers as well.  I have seen the barbaric testing methods now gather dust, and newer and safer treatments being used to treat the cancer I once had.  All the while this is happening, another year of survivorship sneaks up on me.  And another, and another.

Longevity does not run very high on my father’s side of the family, so adding cancer survivorship, thought for sure that would drive my odds down.  Yet, I hit that milestone 50th birthday, and this past March, I recognized my 30th year in remission of Hodgkin’s Lymphoma.

But my most important blessings, and there are two of them, are the daughters I never thought I would ever have in my life, from beginning to today, to tomorrow.  The last decade and a half has been difficult for me with my health, with all kinds of challenges related to side effects from my treatments.  But my daughters keep me focused.  My shell makes it difficult for anyone to understand what my body is going through, not realize the limits and the conditions that I deal with because you cannot see below the shell, that only doctors, images, and I know are there.  That is why I do not try to concentrate too much on numbers.  But milestones are kind of hard to ignore.

The inside joke with my daughters, is that I do not admit my age, rather “color it”, referring to a mathematical equation that will total my actual age.  But this year, there is a funny reference to this age, “double nickels” referring to two 5’s.  This birthday is unavoidable to not recognize the actual age.

I have had a few rough weeks, with the passings of several of very close, fellow survivors, either my age, even younger.  No one appreciates or recognizes their mortality, more than I do.  But, I am doing all I can, my doctors are doing all they can, my loved ones are doing all they can, to make sure that I continue on, get to see many more birthdays, and more importantly, these milestones…

pay attention trolls, this message is for you…

I will see my daughters graduate from high school.  I will see my daughters receive some form of continuing education and have a bright future of their own.  If my daughters choose to get married, I will be there to walk them down the aisle.  And if I am blessed even further, with grandchildren, like many of my other survivors, I will be there to hold them.  And a bonus, though I do not have it set on the calendar on “Paul’s Heart,” I do plan on making 50 years cancer free.

I may not be able to drive 55, but I can admit that I am glad I made it to 55.

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