Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Politics”

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.

Vaccine Opinion From Someone Who Has A Reason To Get One, But Might Not

As a long term survivor of cancer, Hodgkin’s Lymphoma, who deals with a lot of issues related to late developing side effects from my treatments, as well as a key issue of immunocompromise status, there could be no more important news to me currently than the approval of a vaccine for Covid19.  Of all my co-morbidities (issues that complicate my health if I get Covid19), my heart, my lungs, being diabetic, the one thing that will stand out above all others because it is what leaves me more susceptible in the first place to contracting Covid19, not having a spleen, or being asplenic.

At one time, it was believed that people could do without their spleen, an organ that basically filters the blood, but now believed to be quite important when it comes to fighting infections.

Back in 1988, when my spleen was removed as part of a staging procedure (to see how bad my cancer was), I had to take certain vaccines to boost my immunity.  These were not lifetime like the ones we got in school, measles/mumps/rubella and others.  One vaccine was for the flu, another pneumonia, and the other meningitis.  I was told, the flu would need to be done every year, but the other two would be good for life.  Spoiler alert, not true.  I won’t get into that here, but I have gotten multiple boosters of both, since not having a spleen, I cannot build up immunity against those two issues.

I want to state very clearly, I am not an anti-vaxxer.  I also do not buy into any conspiracies about vaccines.  And I object to vaccines being made political.  Decisions I have made about getting vaccinated for anything have been personal, and made pending on status of mandatory or necessary, medically, or legally.

But in my lifetime, Covid19 is the most lethal contagion I have ever witnessed.  And I used to work in medical research, so that says a lot.  With all my co-morbidities, and access to the doctors that know my medical history, I am someone who should get a vaccine for Covid19… when it is not only available, but safe.

Having worked in medical research, I know the process takes time, a long time.  Having been cured of one of the most fatal illnesses, cancer, I know all too well about treatments and therapies that are not studied at length enough to be aware of all the risks.

Here is what I do know.  I know that scientists were able to build on the knowledge that they already previously had on other Corona viruses and SARS viruses of the past.  That would be the starting block for the vaccine for Covid19.  Then it should be just a matter of the scientists doing their job, that they are good at, and finding something that will work, as safely as possible.  Then there is the testing, eventually testing on humans in three stages.  Besides the actual research, this is a step that takes time, and a lot of volunteers.  And then there is the bureaucratic process of approval.

If you think that is a long paragraph, then you have to know, vaccine development is a long process.  In the world, we are recognized as the leader in vaccine development, especially when it comes to safety.  That is how science works.

Have you ever heard of the expression, “putting your thumb on a scale”, or perhaps, even been a practical joker like me, sneaking up behind someone standing on a scale to weigh themselves, and then stealthily sneaking the tip of my foot onto the scale to make the weight a little heavier?

In 2020, that is unfortunately what has happened, intentional or not, to impact the develop a vaccine for Covid19.  Under extreme pressure from a horrifying strategic decision on how to handle the Coronavirus pandemic, the President instead was forced to get to the solution much quicker than time would allow.  The result is like trying to use water to put out a fire fueled by gasoline.

In all honestly, from all things considered, early knowledge of Corona and SARS viruses, the best scientists in the world, the top vaccines currently up for consideration might just be what we need to finally get a grip on this pandemic.  But for a majority of the country, who rely on facts and science to make their decisions, find it much harder to make the decision to get this vaccine, because a “thumb was placed on a scale” of time, to make the process go faster, likely for a combination of political gain as well as humanity.

As I write this, the FDA is holding a meeting to decide on emergency use authorization.  If approved, it is potentially a big deal to the possible end of the pandemic.  Prioritization of vaccines has already been recognized.  Once approved, the vaccines will get shipped out, and into the arms.

But not so fast.  Like I said, there is a three-step process of human trials taking many months to study for side effects.  These trials are tested on healthy, non-compromised subjects.  What does that mean?  That means that the person has no issues that might skew the results.  Someone, like me.  I have all the co-morbidities that make Covid19 lethal to me.  I would not have been approved for that study, even if I had paid to do it.

We are told, the vaccine from Pfizer will have a 95% success.  As many vaccines have, there could be side effects that make it somewhat unpleasant for up to a day.  But the tradeoff, immunity to Covid19, and the lingering effects the virus causes, makes that temporary feeling worth it.

Here is the problem.  There is not data yet released, meaning, it likely has not even been studied, on certain groups of patients.  For instance, there is no data on:

  • pregnant and nursing mothers
  • children under 16
  • people with compromised immune systems (like me)
  • those with a history of reactions or allergies to vaccines

Look at those four groups.  That is a serious segment of our population who will have a difficult decision to make, weighing the risk or benefit of getting the vaccine or not.

And that is not the only factor to consider.  As a thirty year survivor of Hodgkin’s Lymphoma, I deal with late side effects from the treatments used to treat me, side effects that medicine was unaware of at the time.  Cancer patients were not expected to live longer than five years, according to statistics, so we were not studied.

Rushing the process of the vaccine, while good for stopping the spread of the pandemic, does not allow for science to study the potential risks, short or long term.  Even now, science is talking about not knowing the late effects of contracting the virus, because they do not know.

Look, there is a reason we have not seen Polio in decades.  A process worked.  I am too young to recall what it was like to watch someone with Polio, but my mother is old enough to remember, and she said it was horrific.  I am hoping in my lifetime I never see another virus outbreak like this, and definitely not handled the way that this has been handled.

I am not letting the media or any politician tell me what to do.  I am in contact with my doctors (science) who will recommend if I should get the vaccine or not.  For now, a combination of the unknown data, my doctors have recommended a “wait and see” approach of one to two months before consideration.  This is a difficult spot, because, being vulnerable, I am one who needs the vaccine.

The main thing that can do the most damage, is misinformation.  Stop reading it.  Stop sharing it.  Get your information from your doctor for your specific situation if you should get the vaccine or not.  You will be the one to decide if you are one of the lucky ones to ride it out without the vaccine and having exposure, or one of the 300,000 Americans who have died from it.


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