Paul's Heart

Life As A Dad, And A Survivor

An Amazing 50 Years Surviving Cancer – Barry’s Story

From the moment I was diagnosed with Hodgkin’s Lymphoma, I wanted only one thing.  I wanted to hear success stories, not just beating cancer, but surviving years after.  I had heard of a pro football player for the New York Giants named Carl Nelson who had done just that.  I had also heard of a friend of my uncle treated nearly 20 years before me.  That was all and good.  But I wanted to actually see it with my own eyes.

Now, I am approaching another long term milestone myself, 30 years, in March of 2020.  And in the last 20 years, I have actually met hundreds of survivors in person, and know of so many, all over the world who have survived even longer than me.  In fact, one of my good friends is about to celebrate her 30th anniversary in just three days!  #cathycrushedit

Today, I want to take a moment as share a wonderful story about the milestone of 50.  We are in awe of married couples celebrating 50 years of marriage.  We watch homerun records being chased in baseball once the threshold of 50 dingers are hit.  But celebrating 50 years having beaten cancer?  That is truly not only amazing, but inspirational, especially to survivors like me, looking for another 20 or 30 more years.  And the thing is, there are so many of these survivors out there.

So, as I often do, I bring to you, in his own words, a survivor I look up to, as he is not only younger than me, he was way younger than me when he faced Hodgkin’s Lymphoma, has lived 95% of his life in the world of cancer.  He was treated with a regimen no longer used when I was treated, much like those today, fortunate to be treated better and safer than I was treated.  With that, here is Barry.

In 1969, at age 5, in kindergarten, I’m told I have Hodgkin Lymphoma. It means nothing to me. I just know I have be SF immediately. I had to stay in the hospital for 3 months for treatment. The outlook was grim and they told me so. Hodgkins is adult disease. Generally people get in the 16-25, range. I was 5! Next time you see a kindergarten child, that was me!

I was treated with a combination of cobalt and chemo. I had over 6000 rads of upper mantle radiation. (Today, they don’t give adults over 3000 rads, I am told.) I would also have 7 surgeries. When I was released, they said I was the youngest to ever survive Hodgkins. Amazing!

In in their words, “I was their guinea pig.” After my release, I was a weak, frail kid. I was told they weren’t sure if I would live long. I never let those words bring me down. I believe I could beat it, no matter what!

It has beat me up like you can’t believe. I’m 55 now. I’ve been disabled since 1999. There isn’t a day in my life that I haven’t felt pain, but I’ve tried to stay positive. It hasn’t been easy, as you can imagine. I lost count after 50 surgeries. Small or large…they are just part of my life.

As far I can gather, there are 3 people that have survived longer. 2 women on the east coast, who are elderly and a man in Santa Rosa, who is in his 70’s (he grew up in So Cal). They all had their battles of HL in their teens.

Nobody I know can tell my story. I remember quite a bit of the battle. I can’t remember yesterday, but I remember what happened to me at age 5. For that, I am proud to be here today and thank each and everyone of you for helping get here!

50 years later and I have them all wrong!

Editor’s note – this is Barry pictured with his oncologist, the photo taken today!!!

Getting The Call… 30 Years Later

Thanksgiving has always been difficult for me for the last 30 years, because it always reminds me of my diagnosis of Hodgkin’s Lymphoma.  But Thanksgiving also reminds me, it is when I beat Hodgkin’s 30 years ago.  I know it is confusing, because my countdown calendar still has a few months to go.  Depending who you ask, we will refer to either actual remission date (the date we are told we are in remission), or as in my case, when that last IV comes out of my arm, when I am actually done with treatments.  And there is a reasons why I do this, which I will get to shortly.  But first, the phone call…

I had already completed three cycles (the same as months) of a very toxic chemotherapy cocktail, MOPP-ABV, that had huge success with treating Hodgkin’s.  I was now nearly completely bald.  I had gained nearly twenty pounds.  That is right, I gained weight during chemo because of taking prednisone to deal with the other toxicities.  It made hungry a lot, and well, a cancer patient is told to eat well, and I did.

I was sitting at my desk at work, just shortly before 3:00pm, when an operator at the company told me I had a phone call.

Nurse:  Mr. Edelman, it’s Brenda at Dr. M’s office.  I am just calling to let you know we have the latest scan results which show that your cancer is gone.  You are in remission.

I really do not remember the immediate minutes after that.  Time had stopped for me at that point.  I had done it.  My cancer was gone.

Yes, that occurred 30 years ago.  But here is why I do not recognize that as my actual anniversary.

I was expected to go through 6 cycles (months) of MOPP-ABV.  That was the standard protocol at the time.  If you have ever taken an antibiotic, you know that you are supposed to take the entire amount prescribed.  Because the medicine continues to work after it is finished.  Otherwise, if you stop taking it just because you feel better, it comes back, often with a vengeance.  I did not want this coming back.

And at this point, I had gotten through half way my treatment regimen.  Sort of.  The plan was to get through 6 cycles, then, as preventative, either an additional two treatments, or another series of radiation treatments.  And at that point, I had tolerated chemo fairly well, whereas I definitely did not enjoy the burning from the radiation.  So it was clear in my head, I was going to go through eight cycles of MOPP-ABV.

I was going to do whatever I had to, to make sure that my cancer was not only gone, but stayed gone.  This was the plan to offer me the best chance at success.

And that is why, even though I was in remission in November, my counter still has me waiting to celebrate until March.

That Time Of Year Again. So What?

If you have followed my blog over the years, you know this is not a good time of year for me.  Like many others, holidays increase stress, remind us of loss, and well… given today’s political climate, never a dull moment.

It was around Thanksgiving that I was diagnosed with cancer, Hodgkin’s Lymphoma.  Of course, I would carry this nightmare through the entire Christmas season and all of the other holidays that followed, including my birthday.  Ironically, as I have been writing about the 30th anniversary that I recognize in remission of my Hodgkin’s, coming up in March, it was declared in November, just before Thanksgiving that after three cycles, it appeared that my Hodgkin’s Lymphoma was in remission, still leaving me many months to go with preventative treatments (that is why I recognize March, when I was actually done with all my treatments).

So, no, that does not create a “wash” situation.  My diagnosis and remission both in the same month, just before the same holiday do not cancel out my dislike of the holidays.  Admittedly for decades though, I would blame my grudge on just my cancer history.  In reality, there was, and is, much more to it than that.

Going back to my childhood, my house would experience a fire while celebrating my birthday (in December) in 1976.  Two years later, at least four relatives would pass away during the Fall/Winter holiday season.  Though still too young at that point to let these tragedies affect me, came my diagnosis in 1988.  Several years later, just days before Christmas, my stepmother would be hit by a car, with my father witnessing the impact.

For the time being, that was enough events in my life to make dislike the holiday season.  And I was not alone.

With the adoption of my daughters, there was hope that I could put my resistance to holidays aside, if for no other reason, than the innocence of my daughters.  I would at least go through the motions of enthusiasm for the days to come, for their sakes, getting into the spirit.

That became more of a challenge however, because unfortunately, there were issues within our house, that were only dealt with by sacrifices.  And by sacrifices, I mean, we liked stuff.  We wanted stuff.  And to have that stuff, that meant, working on my days off, the holidays, pretty much all of them, all year round, so that we could have stuff.  And it was nice stuff.  Stuff that we no longer kept, including the opportunity of salvaging holidays for someone who finally had a reason to celebrate them, only to not be able to experience them, because I was at work.  I would also experience another major health even just weeks before Christmas in 2012, actually a relapse of an event earlier in the year.

Years later, following divorce, there would be a time period, that I was unable to see or spend the holiday season at all with my daughters.  In fact, it was my disregard for celebrating holidays that led me to actually give every holiday to their mother for regular custody, because the holidays became worthless to me.

But as I have reflected, while I blamed  the event of my cancer on my distaste for holidays, it is way deeper than that.  And to be honest, I do not miss celebrating the holidays either, at least on the holidays themselves.  I do celebrate with my daughters around the holidays, just not on them.  Because the time I get to spend with them, is more valuable to me than the holiday itself.

Perhaps some day, I will take another swing at holidays, if my daughters, and my doctors give me the opportunity to be a grandfather, still many years away hopefully.  But for now, I am okay, just going through another day, another year, no stress, not really giving any thought about all the losses that I have experienced, and definitely no talk of politics, and just simply watch some football.

I do not write this story for pity.  Quite the contrary.  This is a choice I have made.  But the truth is, there are many though who do struggle with the holidays.  Unfortunately, you may not know who they are, as I recently shared a meme recently that said, “check on your strong friends.  They are the ones bleeding in silence.”

And yes, after all this, I am still going to say, Happy Thanksgiving to all of you.  I really am quite thankful for all the care, support, and encouragement that I have gotten over the years, whether through my cancer and related illnesses, or tragic events and crisis in my life.

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