Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Inspired By…”

03 Sep 2019

Preparation For Chemo – Part 1


So, I am a little behind in my “30th anniversary” journal, because by September, I was already in my second round of chemotherapy.  I was happily engaged with the Summer visit with my daughters.

To recap, diagnosed with Hodgkin’s Lymphoma in November of 1988.  I underwent all kinds of tests and procedures to determine how bad it was.  I opted for 30 treatments of a ridiculous amount of radiation therapy which by the end of March 1989, I got to hear the news that I was in remission.  Got married in May of 1989.  I went on my honeymoon.  Followed up with my oncologist in June of 1989, only to find out that I had evidence of new Hodgkin’s.  The decision was out of my hands.  I was going to undergo chemotherapy.

And so begins Part 1 of this post.  Chemotherapy.  If there is one word in the English language that scares the shit out of anyone who has ever heard of the word, without even having to go through it, is “chemotherapy.”  We all have the similar immediate thought when we think of chemotherapy, violent sickness.  We can thank movies and television for this, because that is how it is portrayed.  There is no entertainment value in explaining the importance of chemo, what it does and how, and how it can be managed.  The truth is, there is a lot to be aware of before chemotherapy can even begin.

At this point, I want to stress, the chemotherapy plan that I underwent, is hardly, if ever used anymore, except possibly as a last resort.  Progress and newer methods of treatment have resulted in safer and better results.

I was 22 when I was diagnosed, and by the time I was to begin chemotherapy, I was 23.  A young male.  I was not really thinking about anything other than beating this thing once and for all.  But as it is explained to every cancer patient, chemotherapy works by destroying cancer cells.  However, it not only destroys cancer cells, but it also affects good cells.  For men, that includes sperm cells.

I can tell you, that after 30 years in this world of cancer, and the many people I have met or talked to, fertility is a major concern, but oddly only for one gender.  In fact, the younger generations, those in their 20’s and 30’s, women’s top two concerns are being able to have a child and losing their hair.  Men do not really think about it.  But the doctors do think about it.  And because of the risk of infertility, the doctors recommend taking measures to preserve the ability to have children, no matter what.

I have a long time friend whose son went through Hodgkin’s treatments, different than mine.  He was 19 at the time, so as an adult he could decide what he wanted to do.  Much to his mother’s horror, who had one day dreamed of being a grandmother, he stated that preserving his ability was not important to him, because he was not going to have children.  While he may have felt that way at the time, we all know that at the age of 19, recognized as an adult, we do not have all the life experiences yet to be able to determine what is best for us, and a long time to go in our lives, unable to change our mind.

Amongst the chaos, I was still able to understand the importance of what my oncologist was trying to get across to me, that a particular chemotherapy drug in my cocktail, had the likelihood of rendering me unable to get anyone pregnant.  Being a newlywed, not the thing either I or my wife wanted to hear.  But the directions were clear, I needed to preserve sperm prior to beginning chemo, if I wanted any chance of having biological children.

There was a company in East Orange, New Jersey that dealt with storing sperm.  This would be different than just going to a lab, and taking care of business to have motility (the ability of the sperm as well as availability) determined.  The process was simple.  The company shipped out a special insulated container, do the deed, and ship it back.  Results would determine if I was able to have children or if it would even be worth pursuing.

disclaimer – AND YES I AM USING ALL CAPS… THAT IS NOT ME IN THE PICTURE.  Just so we have that clear.

As a teen, as a young adult, who am I kidding, I have never had a problem with rising to the occasion.  Except for one time.  The one time when I needed “it” to work, it would not.

Having tried to manage the situation on my own and having no success, I asked my wife for some assistance.  In a crushing blow to her self-esteem, the effort resulted in the same situation, unable to complete the task at hand, or rather… in hand.

All kidding aside, the pressure on me at that very moment, that the future of any further generations was at that crossroad, but also, I was dealing with the fact that I was facing cancer and could die, and at the least, chemotherapy was going to be the most challenging thing I would ever endure.

Several hours later, and no longer trying, my wife had surprised me with an attack, my mind no longer focused on what needed to get done, but at that moment what I wanted done, the pressure was off, and with the lid on the container closed, so the sample would be off to East Orange to determine my fate.

Only one thing left to do, and as if a page out of Seinfeld itself, I faced public humiliation over what came next.

My “package” had been sealed properly, and placed inside the medical container to be shipped.  The Fed Ex driver knocked on my apartment door, to pick up that package.  Even though shipping concerns were not that big of a deal back in the late 1980’s, that did not prevent what happened next.

Fed Ex Guy:  Mr. Edelman?

Me:   Yes

Fed Ex Guy:  You have a package for pick up?

Me:  Yes I do.  Here it is.

Fed Ex Guy:  What’s in it?

Huh?  That was kind of rude.  What the hell business is it of his what is in there?

Me:  Just something that has to go to East Orange.

Fed Ex Guy:  It is in a biohazard medical container.  I need to know what’s in there.

At that point, I am thinking, “biohazard?”  My sperm is equivalent to nuclear waste or botchulism?  Trying to find the least embarrassing way to answer his demand, which in spite of me feeling he had no right to ask me, we were at a stalemate if I did not.

Me:  IT’S SPERM!  ALRIGHT?!?  YOU HAPPY NOW?

I think he definitely regretted asking me as his head lowered to the floor.  The box was clearly labelled.  And he knew how to handle packages like that.  In the end, he left grossed out, and I embarrassed.  The he left, and I closed my apartment door.

The results had come back.  I did not have enough sperm in the sample to recommend “storage”.  I would not be able to have biological children if my fertility did not survive the chemotherapy.  Upon hearing the news, my oncologist still insisted that I store whatever I had, even if only one.  I explained to him that the facility would not do it.  And once again, I heard the “time” speech.  I did not have time to seek out another facility.  Treatment needed to begin, and soon if I wanted my best chance at success.

Next up… Part 2… more tests.  Then a major fight with my oncologist just before treatment begins.  Followed by Chemotherapy Mixology 101.

Posted in Cancer, Education, Inspired By..., Side Effects, The Heart | Leave a comment
02 Sep 2019

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.

Posted in Bullying, Cancer, Education, Family and Friends, Inspired By..., Politics, Recreation, Side Effects, The Heart | Leave a comment
10 Aug 2019
2 Comments

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.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart

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