Paul's Heart

Life As A Dad, And A Survivor

Archive for the day “March 24, 2021”

Yo! I Made It!

Of all the reasons I have had to celebrate over the last thirty-one years of my cancer survivorship, today ranks up among the top.  To my daughter’s credit, she is taking this day a lot more reserved than I am.  It is a milestone that many teenagers see as a big deal, second only to when they turn old enough to get their driver’s learning permit.  Turning age 18.

Like many of my friends, I now have an adult age child.  And while her milestone by itself is a big deal, it was a day that on numerous occasions, I almost did not get to see.

In 1989, I was told it was not likely I would have a family due to my treatments.  In 2008, less than four years after adopting my older daughter, and two years adopting my younger daughter, a fatal heart condition almost cost me my life.  Four years after that, a diagnosis of sepsis via aspiration pneumonia again almost took me away from my daughters.  There are numerous other health issues that I deal with.

But, this entire time, I have had one constant from the beginning, who planted the idea in my head, the doctor who recognized what was happening to my body because of the treatments I underwent for my cancer.  I will never forget his words:

“I cannot reverse what is happening to you.  I cannot stop it either.  But, we can try to slow things down, manage what we can.  I want you to see your daughters get older, graduate, get married, and someday make you a grandfather.”

This was a lofty goal considering what I had just been through, a pipe dream, just blowing smoke up my behind.  But he really had me believing that.  And here I am, celebrating my daughter’s 18th birthday.

I did it!  We did it Doc!

I get so many eye rolls from both of my daughters because of the big deals I make about their milestones and achievements.  Their youthfulness has shielded them from the severity of the many events that I have faced.  But as they are older, and aware that there are more issues coming my way, they are quickly understanding, each new day is another milestone, another memory for me.  And it is a big deal.

I consider myself doubly blessed.  In just over two years, both of my daughters will be adults.  I will do all I can not to watch the clock that is ticking against me at that point.

Evidently There Can Be More Than One

One television series I enjoyed watching through syndication was “Highlander.”  The premise was a world with “immortals” who could not die, unless their head was chopped off by another “immortal.”  When one “immortal” took another’s head off, he inherited his powers, until, as the television narration went, “there can be only one.”

Fortunately in the world of cancer survivorship, there is more than one.  And there are more than one in any number of issues related to survivorship.  And just like the main character, likely “the one”, who came from the past, Gavin MacLeod had to deal with things in modern times.

I find myself in a similar predicament.  Don’t worry, I have no intention of chopping off anyone’s head.  But up until recently, I felt as if I had been the only one concerned with, and dealing with this issue.  It turns out there are others.

I am talking about the Covid19 vaccines.

First, I want to be clear, I am not an anti-vaxxer by any means.  As long as the vaccine has been thoroughly researched through its rigorous studies, and deemed effective and safe, I am all for them.  You will not hear anything conspiracy related out of me.

With Covid19 however, the world has been faced with a crisis and challenge that it had not seen in over a hundred years.  A virus with no vaccine and no cure.

Without getting lost in the weeds of what goes into medical research, we all know that it takes a long time to fully approve a vaccine.  In fact, technically, the three vaccines that are currently out right now, are not approved by the FDA, only approved for “emergency use authorization,” an important distinction.  What this meant, was that enough studies had been done, on “normal” or “healthy” people with no other co-morbidities (health issues).

Here is the thing.  For a vaccine to get into the “years later” part of research, that means that scientists have a fairly good idea that a vaccine has a good chance.  And they continue on with the research, either building on that success, or finding out, that once you get into the less-healthy population, may not be a good thing.  But this part takes years.

But we are in a race, without any intervention, the world is talking mass casualties.  So here we are, vaccinating as many as we can, with an “emergency use authorization,” while scientists continue studying the vaccines on other different cohorts (categories) of patients with various conditions.

Besides the elderly, the other critical population to get inoculated, are those with pre existing issues or a compromised immune system.  This grouping of people, of which I am included, are major targets of this vaccine.  And many are putting their faith into getting the vaccine.  A hope for some peace of mind, that they will be safe from Covid19.

Except, not me.  My doctors are actually split on whether I should get the vaccine.  They all have their opinions pro and con.  Which of course leaves me to make the decision myself.  Had their opinions all been unanimous, that would have solved the dilemma.

There are two factors that have led me to the decision, that I am going to “delay” getting the vaccine.  Again, I am saying “delay”, not “not get it,” a big difference.  I am relying on my own abilities to take all preventative measures I can, to protect me from exposures and risks, while I wait.  While I wait for these two factors to be addressed.

The first factor, is science.  There is zero data, that the vaccine protects those of us with either a compromised immune system or certain other pre existing health factors.  And currently, only one organization is trying to address this situation so that we can at least have something anectdotal, and that is the Leukemia & Lymphoma Society, gathering information from as many of the millions of Hodgkin’s Lymphoma and blood cancer patients and survivors that they can collect, in regard to contracting the virus, the vaccine, and the effects of the vaccine.  A start, but right now there is nothing.

Also involving science, something unknown about those of us with compromised immune systems, it is unknown, if the vaccine would have any negative impact on the immune system that we currently have, such as driving down what little we have, making us more exposed to other common illnesses and infections, or our ability to fight them.

And of course, what about late developing side effects?  There is no way to know what they are, because this vaccine has never been used or studied before.  And we are less than five months into vaccinations.  Being a long term cancer survivor, exposed to levels of radiation and toxicities of chemotherapies now deemed obsolete and dangerous, have left me, and many others educating science on late effects.  It is too late after the fact.

Perhaps I could possibly overlook the late side effect issue, if the other issues pertaining to immunity were as overwhelming in data as the vaccine for the “normal” and “healthy” people.

The other factor, and this is the very weak reference to “Highlander,” it seems I am not the only one with this particular situation.  My body does not make antibodies when vaccinated without boosters, sometimes multiple boosters.  I know this, because I had titers drawn (a blood test) following each vaccine, often leading to additional boosters.

Well, with the Covid19 vaccines, no matter which one, there is zero protocol for someone like me, to be checked for antibodies following the vaccine.  Additionally, if it were deemed the vaccines were not enough, and I needed boosters, there is no protocol for administering additional boosters.  There is no data if additional boosters would be safe to administer.  And finally, there is the guess, how would I know if the vaccine worked without a titer test?  Do I just go through life assuming that the vaccine did what it was supposed to, and risk actually contracting the virus, and possibly succumbing from its effects?  Some of my fellow survivors have not had any side effects from the vaccines?  Does this mean that the vaccines did not work for them, or were they just lucky?

Up until recently, I thought I was alone in my thoughts.  I recently received an email from a fellow survivor with exactly the similar situation I just described with antibodies, and their decision to delay vaccines also.

Nearly all of my fellow survivors understand how serious this crisis is, and especially for us with long term health issues.  And we all want to be able to get back to some semblance of a life we once used to enjoy without concern of getting Covid19.  But the good thing about our group of survivors, we respect each others individual decision whether to get vaccinated or not, or if they wish to discuss their reason.

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