Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “December, 2019”

30 Years Of “Birthdays” I Never Thought I Would See

Today is one of the last milestones I will recognize in my year of “30th Anniversary” posts, surviving Hodgkin’s Lymphoma.  And that is to recognize that today is my 30th birthday after being told I was in remission of Hodgkin’s Lymphoma.  Over half of my life has been spent in the world of cancer.  I have not been able to put aside the thoughts, the experiences, the memories, and just move on with my life.  Because, when I did, I was always served a reminder, usually in the most extreme example.

I remember the first comment I made, having just been diagnosed a month before my birthday as well, “I don’t want to die.  I will fight this and beat this.”  No matter how much negativity I heard, or witnessed people’s reactions to me, hearing I had cancer, I wanted to beat this.  I knew the odds of beating cancer were assumed to be difficult, though Hodgkin’s had, and still does, have a high cure rate, still too many do not survive.

My first birthday following the news of my remission, was ten times more emotional for me than when I was diagnosed.  My fifth birthday, not so emotional, but more of an acceptance, and recognition, “I actually did it.”  Ten years would go by, fifteen, twenty.  And if I am being honest, events related to my cancer past, coming to the forefront, I never thought I would see number twenty-five.  And no one is more surprised to be here, THIRTY BIRTHDAYS LATER than me.  Through the ups and downs, no one can appreciate what today truly means to me, including me.

I got married, twice.  I also got divorced twice.  I had two houses.  I lost two houses.

I was blessed to run a large youth group in my church, that trained me to prepare for teenagers of my own some day.  Many of these “kids” are still friends of mine today, with kids of their own.

Never in my wildest dreams did I think I would ever run for a political office, yet I campaigned twice for school board.  While I did not not win, actually lost the first campaign by 135 votes, not bad for an “unknown.”  It would also be the last time I would be involved in politics.

To “give back,” I was certified by the American Cancer Society as a peer-to-peer counselor, offering personal experience in survivorship and guidance with the many issues cancer patients and survivors face.

I held a career for seventeen years until I was physically no longer able to do my job.  It was work I never saw myself doing in a million years, yet, without the college degree, working in medical research, dealing with several projects in cancer, and even handling several of the drugs that I was exposed to during my treatments.  Talk about coming around full circle.

I have literally met hundreds of other Hodgkin’s survivors, and know of thousands more.  And the fantastic thing is that many of them are “older” than me in survivorship years (although some are younger chronologically).

I have written many things that have gotten published, but I actually got to see one of my writings be performed in a staged reading.  Not too shabby for a guy whose college professor told me, “you don’t have the intelligence to write a comic strip.”

I was recognized as Honorary Survivor Chair for our local Relay For Life in recognition of my 25th year in remission.  Yet another “mind blown” moment that I never would have thought I would see.

A movie waiting to be made… I had nearly fifteen years with the best fur friend anyone could ever be friends with.

But nothing, nothing, could mean more to me, thirty birthdays later, than to be blessed with my daughters.

My treatments left me unable to have children biologically, but that would not stop me from becoming a father.  Even if it meant travelling across the world, twice.  I definitely never saw that coming.

In 2008, I had to have emergency open heart surgery, as I was dying from a “widow maker” heart blockage caused by my treatments thirty years ago.  And though that episode definitely rocked me, as far as grabbing my attention reminding me about my mortality, it also stirred up a stronger fight, to say, “not yet.”

I am so appreciative to be able to write this post today.  And I have always wanted to see my next birthday, and so on.  And now, as my daughters are older, I am seeing the women that they are becoming, as the choices they make today, are determining who they are going to be, and I want to be there for that.  And to be able to do that, means I will have to celebrate many more birthdays.  And I know it can be done.  Of the many other survivors I know, so many are years ahead of me in survivorship, some, even decades longer than me.  All of us agree, it has not been easy.

But I am so thankful for the life I have.  I am blessed with my daughters, family, and friends too many to count, all who have gotten me here today.

There is a joke I play with my daughters, I do not tell them my actual age.  They can do the math if they want to.  They have the information.  But one number that will definitely mean so much more to them, is thirty.  Thirty years of birthdays.

Under Your Scars… There Is No Getting Over Them

The first time someone ever told me to “get over it,” occurred when I finished my cancer treatments, wanting me to just move on.  It was my first wife, who felt it was time to move on with our lives.  I would hear this phrase repeatedly later on in my survivorship as health complications from my treatment past, would continually arise.  Emotionally however, it would begin to start taking its toll on me.  And again, I would be told to “get over it.”

Like many other cancer survivors, I have my share of physical scars from surgeries, biopsies, and from the treatments themselves.  But I also have my emotional scars as well.  These scars have been diagnosed as Post Traumatic Stress Disorder, PTSD.  And while the late comedian George Carlin actually did a routine on the progression and history of PTSD, I assure you, it is no laughing matter.  I will give you an example of just how powerful this issue is.

This is a piece of exercise equipment, called an “eliptical.”  It is named after the motion of the footwork necessary to operate.  It is a great way to burn calories and lose weight.  But for me, this machine almost killed me, literally.  And I have never gotten over it.  And as much as I really need to, just get over it, it is easier said than done.  The sensors on this machine would register my heart rate race from the low 70’s to 152 in less than a minute of exercise.  Now, there is more to the story, but for the purpose of this post, I could have died.  My cardiologist even went as far as to tell me, it was not a matter of if, but when.  This machine could have done just that.

Yet here I am later, participating in cardiac rehab for an additional procedure to my heart I had earlier in the year, and yes, I had to face this machine once again.  It is a part of my routine.  I should be able to just “get over it.”  I have nurses and trainers watching my efforts.  My heart is working as it should following the procedure.  Everything is in my favor now, and yet, I can feel the panic as I step up, and start stepping.  My eyes stare at the heartbeat numbers on the display as they climb to triple digits causing me intentionally to slow down so as not to push my heart, and at the same time, not giving my heart the work it needs to stay strong.

I cannot just “get over it.”

Music has always been a part of my coping, my healing, my surviving.  I have always focused on a particular song to help me deal with whatever I am facing at that moment.  And every now and then, a song comes along, and has a profound effect on me, to the level that I develop an entire new respect for a particular band.  And in this case, Godsmack released a song called “Under Your Scars.”  When the song was released, and I heard the lyrics for the first time, clearly I was going to hit “repeat” on my stereo system again and again and again.  Calling the lyrics powerful is a huge understatement.  And the music put to the words make the song a powerful anthem to those who struggle with their “scars,” whether physical or emotional.

Godsmack’s lead singer, Sully Erna explained that this unusual ballad for the band, was inspired after hanging out with friend and fellow musician, Lady Gaga (yeah, I know, how do those two acts get together?).  But as I read the interview on Altpress, Erna stated, “In the short amount of time we hung out, she made me realize that we all have these imperfections, these wounds that we carry (whether they’re physical or emotional) that cut so deep they can cripple us.  These feelings leave us vulnerable, or embarrassed, or even unworthy at times. And our human nature — when they’re exposed — is to shut down, rather than embrace them and realize that not only can we overcome them, but we can also become an inspiration to inspire others to have a voice and find their inner strength to show their scars off loudly and proudly to the world. Our ‘Scars’ are nothing more than our battle wounds from life and they helped mold you into who you are today.”  This quote is directly from Erna’s interview on Altpress by author Alex Darus, July 19, 2019.

The song, “Under Your Scars” goes even further than being written and performed.  It is now an organization formed by the members of Godsmack, called The Scars Foundation.  This non-profit organization is aimed at assisting those battling depression, suicide, bullying, and other issues, physical, and emotional.  Here is the link to the Scars Foundation page:

You can see and hear directly from lead singer Sully Erna just what the Scars Foundation is about, and how it will make a difference.

While I am fortunate that I have help to deal with my PTSD and my various health issues.  Unfortunately, there are so many who do not.  And some cannot get help.  Many do not want help.  And for the rest, left with only questions.

Our worlds are often rocked when we hear of celebrities who commit suicide, wondering why, assuming that popularity, celebrity, and wealth are some sort of cure or prevention for anything bad in life.  Curt Cobane, Robin Williams, Michael Hutchence, Chris Cornell, Anthony Bordain, the list goes on.  In reality, my life has been touched by so many friendships and relationships who have experienced the realities of suicide.  Several of my friends I have known for a long time and never knew what they had kept inside of them.

These scars do not go away, physical or emotional.  You do not just “get over it.”  You find ways to get through each day.  You find ways to help deal with feelings through various means, one of which I exercise quite a bit, writing.  Whether by blog, diary, or book, expressing yourself in writing is a way to release energy from the physical self, and while it does not heal, it does help to give a chance to understand.

We all go through difficult times in our lives, and the extremeness of the event, does not make one less difficult or meaningful than another.  Pain is pain.  The only one who understands fully what we are dealing with is ourselves.  And if we are able to reach out and express ourselves to you, please do not say, “you just need to get over it.”  They are called scars for a reason.  Scars never disappear.

One final link I would like to share, .

If you are depressed or anxious and are having thoughts of suicide, call the National Suicide Prevention Lifeline: 1-800-273-8255.

Here is the link to the song, “Under Your Scars” by Godsmack.

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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