Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Bullying”

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.

Another Year Of “Paul’s Heart” On The Way

I just received notification that my domain name has come up for its annual renewal.  Though technically, “Paul’s Heart” shows as only having started January 6th, 2013, it actually began the year before, as a technical glitch, forced me to begin all over, transferring all of my stories over.  Fortunately at that point, it was only a few dozen.

Although my first post, was just a “Welcome To Paul’s Heart” message, and what my blog was going to be about, life as a cancer survivor and as a dad to two wonderful daughters, the first official post was called, “What Happens When You Outlive Statistics.”  That was written eight years ago.  My health had already turned from my late side effects from Hodgkin’s Lymphoma back twelve years earlier.  And now, I am a survivor of cancer of more than thirty years.

The thing that keeps me going, is I have goals.  Goals with my daughters, and things I still want to complete.  The Covid19 pandemic has given me the best start of writing my first book, written solely by me.  In fact, not even completed, I have ideas for three more after that one.

Then there are the things I have written here.  I have published 922 posts so far, and I have 254 prompts started.  So I am not running out of material any time soon.

But what has meant the most to me, are the comments that I have received over the years, either encouragement or appreciation because of knowledge gained from my experiences.  Honestly, I have a lot longer to go.

R – E – Spons – I – Bil – I – Ty

Do you see what I did with the title of this post?  I had to take a liberty and stretch it out for the proper number of beats, but it works.  I wonder how the Queen of Soul would have written lyrics to this title instead of her easily recognized hit, “Respect.”

“What I got, baby I have it.

What you got, I don’t want it.

All I’m asking

Is for a little bit of responsibility, when you are out (just a little bit).

Hey baby, when you get home (just a little bit).”

I could probably re-write the song in “parody” to message today’s crisis concerning Covid19.  Emotions are running high, complicated by fatigue, denial, misinformation, and an overall “enough already, this should be gone by now” attitude.  But it is not.  We are currently dealing with Covid19 at its worst levels, with no sign to an end, just a hopeful light at the end of the tunnel with a vaccine.  There is a problem however.  There are four huge holidays dropping on us at the same time; Thanksgiving, Christmas, Chanukah, and New Year’s.  This is the time of year that families not only need each other, but should be together.

And yet, as we enter this period, the experts tell us “no.  Don’t do it.”

We find ourselves now, as we did at the beginning of all of this, facing advice and recommendations from medical experts on what we need to do to prevent contracting Covid19, to reduce the spread of Covid19, and to hopefully eliminate the need for drastic measures to deal with any cases of Covid19.

And what did we do back then?  Not all of us, but too many, scoffed at the recommendations.  Using all kinds of excuses from “they changed their minds, they have no idea what they are dealing with” to “my freedom not to follow the recommendations.”  After all, who better to decide what is the right thing to do to live with a major pandemic, health experts who themselves were learning what to do as this was a completely new and unknown virus, or “Joe Sixpack” who believes better to believe in conspiracy theories and immortality.

Responsibility.  This word got tossed around a lot at the beginning of this crisis.  The health experts said it was our personal responsibility to follow CDC recommended guidelines.  Political hacks threw the term “responsibility” a lot more loosely, making it more up to the individual to determine what is right for them to do, and not what the CDC recommended.

I will not spend my time arguing about origin, time frame, blame, none of that.  Because that will not get us through this any quicker.  But, here is the fact, leaving it up to individuals incapable of being responsible has led us to where we are today, now, nine months later.

It was believed and recommended by scientists, you know, the ones who study viruses and outbreaks, that if the majority wore masks (and it was not even based on 100% compliance because by nature, some of us are defiant about anything for no reason), washed our hands, and kept a fair distance, we could be in a spot where this was better managed.  Yes, the sacrifice would take some time, several weeks at least.  But it would work.  We saw it happen with other countries.

We did not stand a chance.  Misinformation, and lack of leadership by example, there was no need for people to follow the recommendations of the professionals.  And so, we continued to “burn” with Covid19, never actually even leaving the first wave, but building up to a level unimaginable for anyone in this modern era for a country as advanced as ours.

But here we are again.  The warnings are stern.  Now more than just masks and distance, we are being told to “stay” away during the holidays.  And just like back in February and March, the misinformation, conspiracy theories, and goading, encouraging people to take a stand, that to give up their holiday with loved ones, is to be better off dead.

Is this where we really are?  That it would be better to get together, possibly contract Covid19, and lose the life of a loved one to Covid19, as a protest to being told not to gather for just this year?

As a cancer survivor, I know all too well, the length of time, taken away from a life, dealing with a health crisis, in my case, eighteen months.  Eighteen months that people would not visit me, spend time with me, and that many times I was physically unable to do things and go places.  This is an advantage I have with patience, as opposed to those who have not had to face this type of adversity.

But remember, in the beginning, the pushback at the thought of smothering the outbreak in the United States, just as we had seen done in other countries.  It was only going to be several weeks, likely no more than two months.  The war cries of the economy cannot handle that kind of restriction, and of course, “don’t take my freedom away,” took all hopes of getting the initial onslaught of Covid19 under control.

Nine months later, our cases are more than ten million more than back in March, and our economy is far from recovered, as we approach more restrictions, going backward from the openings that had occurred.  Please, someone explain to me, how much worse would it have been to do as thought was best in the beginning to control Covid19, than dragging it out all these months, with many months to go, the loss of lives and the struggling of the economy at levels I never would have thought I would see coming from the greatest country in the world.

We are heading into the busiest, and for many, the most important holiday season.  And it has gotten so bad, experts are telling us not to travel and visit homes for any of the holidays, stop the spread.

If you have someone in the family of older age, some think, “this could be their last…”.  There literally are any number of reasons, besides Covid19 fatigue, that we want, no, need to see our families.  And the driving factor could very well be, “their last opportunity.”  But the reality is, what is it worth to get through the holiday, only to contract Covid19, and die because of that gathering?  How many famous people have we seen, reach such a ripe age, only to be taken out by Covid19?

Trust me, I get it.  It is no secret, there is travel involved for me to see my daughters.  The above photo, was the last trip they flew before things got really crazy.  Since then, I have had to miss several visits for many reasons, all related to Covid19, whether at the beginning, when we did not know what we know now how to get around life with Covid19.  With all the precautions I take, and my daughters follow, with proper planning, I was able to have visits with them during this time.  I am one of the vulnerable to Covid19 checking off nearly every box of risks.  But, confident in having done everything I can, I believed these visits could be done safely, and they were.  The experts were correct with their recommendations.

But it is the actions of others, that I cannot control.  I know plenty of people who either denied the virus, or ridiculed the precautions.  Many got sick with Covid19, and some died.  Those that have survived the virus, there are still some just shrugging it off as “nothing”, perhaps their pride preventing them from being upfront about their experience with Covid19.  Most of the people I know that have had Covid19 all say the same thing, “you don’t want it.”

Covid19 is taking a lot from all of us, in the form of time.  My daughters being older, I am losing opportunities of their youth, restricted by the virus.  I have to balance risk along with frequency, making the difficult decision to reduce number of visits while our country is still struggling.  But as hard as it is, I cannot control what everyone else does, which means I have to take control and make the decisions on my own.  I am doing all I can that I keep from happening, not being able to see my daughters until well into the next year when they expect Covid19 to abate.

But it is my hope, with a new president, and a new attitude among the health agencies, that the messages and warnings that I have respected as the right and safe thing to do, will convince many others, we have the power to help things get better, even if just wearing a mask.  And wearing a mask does not take away your freedom.  I still have my freedom and my life.  The only ones who lose their freedom, are the ones that die from Covid19.

It boils down to responsibility.  The prior administration, and some states governors, say it is up to individual’s responsibility to do what is necessary.  And so far, that has failed, in the form of over 265,000 dead Americans and nearly 13 million Covid cases in the United States alone.

What does responsibility mean to you?

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