Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “March, 2021”

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.

I’m “Gonna Miss This”


It is inevitable.  It is something parents have to go through.  A child turning18.

Over the years, it has gone unnoticed by my daughters how many photos I have taken of them over their childhood.  It is safe to say, thousands.  They definitely notice now, and get teenage-level annoyed as I attempt yet another photo.  I try to explain to them, that I feel bad, as there are not many pictures of me with my parents to reflect on.  I want these pictures for them in the future.  And for me right now.

I spend a lot of my time, looking over time.  Time from when each daughter was placed into my arms to today.  I do this mainly in between visits with them, not being able to see them every day.

I realize, just because my daughter is turning 18, becoming an adult, she is always going to be my daughter.  I get that.  But right now, the world is not ready, or worthy of a child with such a beautiful and kind heart.  By the same token, the world does need someone like her, now, more than ever.

I have been celebrating with her this week, and she will turn 18 next week with her mother.  The next time I see her, she will be my adult child.  Gone are the days of reading bedtime stories, amusement rides, and lots of giggles being shared.  Now I have to hope that I have done all I can as a father to teach her the important things that will help her in life, from relationships, to careers, to money management, to being happy.

As a DJ, I spent a lot of Saturday afternoons doing weddings, and playing songs for Fathers and the brides, and annual Daddy/Daughter Dances.  And during each, I had the opportunity to play songs that would forever last in each and every dad’s heart as they heard it, and danced with their daughter.  As I look through the photos of my daughters, this soundtrack plays with an endless loop.  I love both of my daughters to the ends of this earth.  And as one becomes an adult, I am going to cling on to my other teen, for as long as I can.

So, I would like to share some special lyrics I have heard over the years.

Trace Adkins – “You’re Gonna Miss This”

“You’re gonna miss this.  You’re gonna want this back.
You’re gonna wish these days hadn’t gone by so fast.
These are some good times.  So take a good look around.
You may not know it now.  But you’re gonna miss this.”

Thomas Rhett – “Remember You Young”

“And hey, babies, crawling on the carpet, no, you won’t be that little for long.
One day, you’ll move away, but you’re still gonna stay this innocent after you’re gone.
‘Cause no matter how much time goes by, and no matter how much we grow up
For worse or for better, from now ’til forever, I’ll always remember you young.”
Alabama – “Never Be One”
“No. you’ll never be one again.  The two’s are tumbling on in.
Daddy’s little girl is growing up in the world.  You’ll never be one again.”
Tim McGraw – “My Little Girl”
“You’re beautiful, baby, from the outside in.  Chase your dreams, but always know the road that’ll lead you home again.
Go on, take on this whole world, but to me you know you’ll always be my little girl.”
Peter Cetera (of Chicago) – “Apple Of Your Daddy’s Eye”
“If I had my way, time would stand still.  You’d stay as sweet as you are.
But time waits for no one.  It never will.  Your gonna leave me soon enough.
I’m just sad ’cause you’re growing up.  Held you in my arms so tight.
I’d never forget the best years of my life.”
Al Martino – “Daddy’s Little Girl”
“You’re the end of the rainbow, my pot of gold, you’re daddy’s little girl to have and hold.
A precious gem is what you are, you’re daddy’s bright and shining star.”
Darius Rucker – “It Won’t Be Like This For Long”
“It wont be like this for long, one day soon that little girl is gonna be All grown up and gone.
Yeah this phase is gonna fly by, he’s trying to hold on, it won’t be like this for long.”
John Berry – “How Much Do You Love Me?”
“Children grow and years go by, moms and dads get grey.
Little girls get married and give their dinosaurs away.
They’ll live their grown up lives and call their daddies now and then.
And from a thousand miles away I’ll hear her on the stairs again,
“How much do you love me?”  “How much do you really care?”
I touched heart, spread my wings and said, “All the way to there”.”
Steve Kirwin – “My Little Girl”

“You wrapped me ’round your finger, your smile made me melt.
I wished so many times I would’ve told you what I felt.
From your first steps to sweet sixteen, the rush of memories feels like a dream.

I see the woman in you, but for my whole life through, you’ll always be my little girl.”

Happy birthday to my “ting ting”.

Playing Ketchup


Coming across my news feed yesterday, was some hopeful news in my world of dealing with Covid19 and the vaccine.  As I have previously stated, I support the vaccine, I believe in the science of the vaccine, and I believe it is critical in getting to the end of this pandemic.  But I have also stressed that I have made my own, independent decision not to get the vaccine at the present time based on facts available, rather, not available, and consensus of my doctors.

First, make no mistake, my cardiologist has made it quite clear.  Because of the nature of the virus, if I contract Covid19, I am likely to die because of my heart issues.  So I either need to avoid getting Covid19, or I need the vaccine.  And currently, there are three vaccines that appear to be leading to the end of this awful pandemic.

My hesitation is clear.  There is no research on those of us who have had “blood cancers,” like me, Hodgkin’s Lymphoma that show the vaccine having any impact on producing antibodies and no protocol if boosters are needed or even safe.  There is no research that shows the potential to have an impact on our immune system from the vaccine, making us more susceptible to other illnesses and the ability to fight those.  And finally, there is no research on long term side effects from the vaccine.

There has been no time to do the research on these questions.  But that is why there are vaccines out now.  Not to be confused, these are not FDA approved vaccines, yet anyway, as they have not completed their studies.  They are only approved for “emergency use authorizations.”  The rest of the studies have yet to be completed.

For most, “normal” and healthy people, the vaccine will provide at least some level or relief, especially mentally.  I believe we are starting to function again economically as we have learned to adapt in the days of Covid19.

But while we wait for science to catch up for those of us with immunity issues, someone is stepping up to at least help when the time arrives.  The Leukemia & Lymphoma Society has announced a partnership with a research platform, called Ciitizen, that will assist in collecting data from those who have had a form of blood cancer, and whether they have contracted Covid19, gotten a vaccine, side effects, and “long haul” issues, and more.  This will help many to decide for themselves, if the risks are likely or rare, and if it is a risk worth taking or not.

There will be some who will protest the collecting of this data as being intrusive.  If it matters to a person’s survival, you are going to need to get over this paranoia.

I have made my decision not to get the vaccine right now, simply because I have no data to support a decision to get the vaccine.  This registry, which patients will have access to, will provide statistical support to help make a more informed and scientific decision while we wait for the FDA, the CDC, and all the other agencies to “ketchup.”

For the full story, please go to the LLS website at:  https://www.lls.org/news/the-leukemia-lymphoma-society-launches-national-patient-registry-to-answer-crucial-covid-19-questions-for-blood-cancer-patients?fbclid=IwAR0nhbOTF-QClmDllNpoR2TTSbJ8S0ej_mO_X1dDiDEtv3_DA0l4nboYJC8

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