Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “The Heart”

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.

Birthdays, The Day After


In fifty-five years, I have had some interesting birthdays.  Being soon before Christmas, as many will understand this, I did get “shorted” when it came to gifts.

And clearly, the goal was to embarrass me if the gift rationing was not bad enough.  I believe this to be the last photo taken, the time around my birthday and Christmas, before my parents divorced.

In 1974, my birthday had almost turned near tragic.  This is one birthday I remember every detail.  Even it being a Thursday night, which I will get to shortly.  Since my parents divorce, my mother worked second shift, which left the birthday celebrations up to my grandmother and her sister.  A simple tradition, make the requested birthday meal (not to be confused with a last meal), cake, presents, some time to play with the presents, a Christmas special on TV, then off to bed.

Thursday, December 19, 1974, started off the way that all my prior birthdays had begun.  My grandmother made the meal I chose, tuna noodle casserole with sliced hard boiled eggs on top.  She made it with peas that I would pull out and leave on the plate.  At the table, were my grandmother, my aunt, my sister and I.  My uncle was expected to stop by on his way to “bowling night” (that’s how I remember it being a Thursday).  But he was running late.  So, it was just us eating.

Then, my aunt disappeared.  I knew what this meant.  She was going to light my birthday cake, or in this case cupcakes.  I do not recall if I requested it or not, but any kind of cake made from scratch by my aunt was awesome.

Soon, she appeared, with her cardboard tray, carrying my birthday cupcakes and nine candles.  Off went the kitchen light, leaving the kitchen glowing only from the candles.  Happy Birthday was sung by all, singing the same note.  That was okay.  The cupcakes were going to be worth it.  Then I went to blow out the candles.

Just then, my uncle came crashing through the front door.  He was yelling “FIRE!” rushing towards us.  My aunt responded, “yes, right here,” pointing to the candles.  “NO!” he shouted, “FIRE!”  And again my aunt replied with “I know.”

As my uncle rushed towards us, he took a sharp right turn just before getting to the kitchen from the dining room.  Attached to the dining room of this old Pennsylvania “twin” home, was a side porch.  “Older” people were known to use these porches as storage areas, such as keeping a large freezer, keeping beverages cold in the winter, and… stacking newspapers to go to recycling.

My aunt it appears, choosing to light my candles on that side porch, upon striking the match, threw a spark onto a nearby stack of newspapers.  The spark smoldered as she brought my birthday treat into the kitchen, eventually erupting into flames.  My uncle and my aunt were both right.  They both saw a fire.

Luckily, the damage was minimal contained to that side porch.  But the smell in the house, lingered for weeks.  It definitely could have been way worse had my uncle not been late at all, sitting at the table with us all already, or not even had come at all.

Unfortunately, not the most unusual birthday I have experienced.  In general, I don’t like them.  It has nothing to do with getting “older” at all.  As I have mentioned, I do not like this time of year between Thanksgiving and Christmas.  This is the time of year that I was not only diagnosed with Hodgkin’s Lymphoma, but have dealt with several crisis.  Also, the season just always seem to have a cloud over it.  It just is not fun for me.

That changed for me when my daughters came along.  It was not for me, but I enjoyed my birthdays for them.  Their innocence always got me through this time.  It is the best feeling in the world to hear your children say “Happy Birthday Daddy” (actually Dad now, a demotion attributed to their maturity).  But the really cool thing is, now they actually remember my birthday without any prompting.

Today, my birthdays are celebrated  even more different.  Now divorced, I get to spend my daughters on video.  And thanks to Covid19, even my birthday meals have changed.  Used to being treated out for my birthday, Covid19 made it necessary to eat in again, the first time since I was a child.  But you know what?  It was a pretty good meal.

 

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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