Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “September, 2019”

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
01 Sep 2019

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.

Posted in Cancer, Education, Side Effects, The Heart | Leave a comment

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