Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

Labor Day – Unions… A Matter Of Life And Death


Ah yes, Labor Day.  The unofficial end of Summer.  The return to school.  A long weekend of parties and picnics.  And this year, unfortunately, a nightmare for the eastern coast of the United States and the Bahamas dealing with a major hurricane, Dorian.

Many believe that Labor Day is about just taking the day off, because you are a worker.  Officially, Labor Day is a Federal holiday, which we ALL enjoy, dedicated to the labor movement and organized labor, also known as “unions.”  That is right.  If you are anti-union, you can stop reading right now, and get to work.  Well, after you read this post, because my post today is more than just about a labor movement.  It meant the difference to me with life and death.

In November of 1988, I was diagnosed with Hodgkin’s Lymphoma.  I was working at the time for an appliance parts distributor.  I thought I was lucky because I had health insurance.  The truth is, the insurance was not good enough.  But again, I was lucky, because I had an employer who cared.  I was not just a number, or an expense.  In today’s work culture, employees are nothing more than something to affect the bottom line.  My employer recognized that I needed better health insurance, and took the initiative and got it, because of me.  His decision however, actually benefited everyone in the company.  Everyone ended up with the better health insurance.

As time would go on, I would change jobs, and no longer in cancer treatment, I was no longer able to get any employer to give me health insurance because I was considered too much of a health risk, a liability.  That is, until March of 1997, when I was hired by a major pharmaceutical company.  As a new employee, following my probationary period, I would officially become a union member, the third generation involved in a union.  And with the benefit of being in a union, I automatically qualified for health insurance, something everyone else had denied me, because they could (at the time before the Affordable Care Act came to be).  A union health insurance plan is a “group” plan, which means that everyone gets covered.  Risks are combined with healthy individuals, and insurance companies hopefully were able to minimize their losses because of the large memberships.

So how did my union save my life?  I was roughly nine years out as a survivor of Hodgkin’s Lymphoma, but my health was good.  I had gotten by without health insurance.  And for ten years after I joined my union, I remained pretty healthy.

But in 2008, I got the shock of my life, when it was discovered that the treatments I went through for my cancer, had been causing late effects that had finally developed to a point to require attention, in a big way.  I was diagnosed with a “widow maker” heart blockage caused by radiation therapy I had received eighteen years earlier.  Were in not for the great health coverage I now had, and the number of tests that needed to be done on a “healthy 42 year-old”, I would have died.  Over the years since, I have had to deal with several more medical emergencies that have come up, all from my cancer past.  But without having the health insurance provided by my company and union, I would not be typing this post.

I get why people want to demonize unions.  But I strongly support unions and what they do for workers.  Think about it.  Back in the 1950’s people did not have to work three jobs to make ends meet.  Today workers struggle doing similar work to the 1950’s for salaries that in no way kept up with the rate of inflation.  And in spite of CEO’s making millions, they still force employees to work for minimum wage, or less.  Because of unions, group insurance coverage was pretty much guaranteed without being discriminated against.  And just as important, an employee had backing to prevent being reprimanded for anything other than work performance, such as chronic health issues.  Of course, unions were the ones who fought to improve working conditions, overtime rates and so much more.

And without my membership in the Steelworker’s union, I definitely would not be here, right now, paying respect to the holiday that acknowledges the labor movement.

Happy Labor Day.

Hodgkin’s Lymphoma Awareness Month


It has been a while since I have posted.  I enjoyed a wonderful Summer visit with my daughters.  They are back home with their mother, which can mean only one thing, return to school.  And return to school means one thing, September.

My posts over the past several months have been recognizing “30th anniversary” marks throughout my diagnosis of Hodgkin’s Lymphoma, treatments, eventually leading up to the 30th anniversary of the completion of my treatments, remaining cancer free for 30 years.

Having been diagnosed in November of 1988, that makes this September actually my “31st Hodgkin’s Lymphoma Awareness Month.”

Just as I counsel new cancer patients in learning to deal with remission, and combat fear of recurrence, I have literally taken things one day at a time.  That first year being the toughest, with even the slightest similarity of a symptom causing a panicked fear of a recurrence.  Before I knew it, I would hit five years, ten years, twenty-five years, and my thirty year mark is just seven months away.

It is really hard to comprehend the complexity and the paradox of Hodgkin’s Lymphoma.  It is considered a rare cancer, in number at least, especially compared to lung, breast, and colon cancers.  But it is known to have one of the highest cure rates at around 86%, up a few percentage points from 1988.

The frustrating thing for me, and other long term survivors, is that with a high cure rate as it has, a 100% cure has not been found.  And we hardly ever hear of many new methods to treat it, with the majority of funding always going to the bigger cancers.

What I will tell you is this, that Hodgkin’s patients of today, have a great chance of survival, especially when it is caught early.  And the treatments being used today are not near as toxic as what I and other long term survivors were exposed to, leaving us to deal with extreme late developing side effects.

Hodgkin’s Lymphoma is a blood cancer, so September is also recognized as Blood Cancer Month.  Other blood cancers include Leukemia and non-Hodgkin’s Lymphoma.

To all my Hodgkin’s friends and survivors, this is the month is our month.  Make people aware of Hodgkin’s Lymphoma.  More importantly, make people aware that it is treatable.

I would be remiss though, if I did not recognize so many of my fellow survivors who are not here with us today, having passed away from complications of survivorship, or the Lymphoma itself.  You are never forgotten.

A Test You Cannot Cheat On


It is a pretty safe bet that anyone reading my posts has had to have a blood test done at some point of their lives.  Whether it be for marriage, an employment physical, medical follow-up, whatever the reason.  Some blood tests, you have to “fast,” not eat or drink for a period of certain hours.  This is to give a “clean” number reading, not affected by nutrients or ingredients in food such as caffeine or sugar.

So, we do just that.  Knowing that we have a blood test coming up, that is meant to measure sugar, or cholesterol, or something else affected by our diet, I can at least admit that I go overboard in the starvation of my body of the foods I enjoy, just to have the possible lowest number on that test.  And it usually works.  And as I hide nothing in my posts, immediately following the blood test, I go for a nice lunch of the very things I denied myself.  At that point, with the blood test done, my cheesesteak and fries will not affect my results.

The truth is, we all have a tendency to “cheat” on certain blood tests.  And it was a matter of time, before a blood test was created to prevent misleading numbers that do not reflect accurately the test being measured.

As I have been followed up for a long time with all the late side health effects I deal with, I get blood work done annually.  I get the usual things checked, like cholesterol, and of course sugar.  For as long as I can remember, I have had a test done called an “A1C” though never really paid attention to it.  I just watched the “sugar” and “triglycerides” because these were the things I always heard discussed.  Knowing that these were impacted by drinking sodas, eating candy bars, ice cream… you know… all the good stuff, I made sure to go easy on those things when I had these tests done.  But this A1C was always in the background, hovering around 5.7 to 5.9.  I had no idea what that meant until two years ago, when I was warned that with numbers like that, I was “pre-diabetic.”

Well, to me that just mean I was not diabetic, so really all I needed to do was just reduce my intake a little bit and I should be fine.

Last year, during my summer time with my daughters, I was unable to use my barbecue grille for a period of time.  I tried to use my oven to broil things, but it was just not the same.  And it would be too expensive to eat out every night.  So, while I waited for the grille to get repaired, we ate pasta.  A LOT OF PASTA.  Which of course most know, pasta is carbs, which turn to sugar.  It was two weeks before the grille was fixed.  At the end of the summer, I finally got around to my blood test (mainly because of my fear of needles I always drag the test as far as I can).

8.9

The A1C test measures your average blood sugar levels for the last 60-90 days, in particular, how much of your hemoglobin is covered in sugar.  That is right, unless you have been “cheating” for the last 60-90 days, the A1C is going to be the determining factor of being or pre-disposition to, diabetes.  As stated above the picture, my number was 8.9.

Of course, as soon as my doctor informed me that I was now being diagnosed with diabetes, out came the excuses… the grille, my daughters visiting…  The test measures 60-90 days average.  My daughters were with me for 49 days.  Fortunately I was not at the point where I need insulin (which I would never be able to afford), but my local grocery store sells a very affordable 90 days supply of the medicine I was prescribed to force my A1C down to a safe level, and get back to being “non-diabetic.”

I have other factors that play into a possible diabetic diagnosis, but the sugar was a definite.  But after a year on the medicine, my A1C is back down to “pre-diabetes” level, my weight is down.  Stress also plays a major role affecting the A1C as well.  And as a long term survivor of Hodgkin’s Lymphoma, exposed to an extreme amount of radiation for treatment therapy thirty years ago, radiation can impact the pancreas which can affect the production of insulin.  Great, just what I needed, yet another health issue from surviving my cancer.

Some of my fellow survivors are in the same situation as me.  There are those that had huge spikes in their A1C once they stopped taking their medicine, having to return to taking the medicine, or worse, taking insulin.  Since many of us have heart issues because of our treatments, we really do not need the complications of diabetes added to our lists.

A recent study by Springer states that there is a 16% increase in childhood cancer survivors who received radiation of 10Gy (units of radiation) to the pancreas.  To put that into perspective, myself, and many of my fellow survivors decades ago received nearly 4000Gy.

If you are currently a normally healthy person, just keep doing what you are doing, but keep an eye on your health.  Follow up annually.  Get your blood levels checked.  For me, and others, it is just another thing we have to add to our list.  Once diagnosed with diabetes, and I know many who are, the complications only get worse.  If you are lucky to be able to prevent diabetes, do it.

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