Paul's Heart

Life As A Dad, And A Survivor

Archive for the day “December 6, 2019”

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!!!

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