Paul's Heart

Life As A Dad, And A Survivor

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Ian Large, Not Just His Name

I met Ian a long time ago.  So long ago, way before Facebook.  So we were not picture crazy back then, so I have to use one of his current pictures.  We met on an older communication system, a listserve, arranged for patients dealing with or in remission of Hodgkin’s Lymphoma.  He lived across the pond in England, but that was how great the internet was, allowing those of us, struggling with our cancer, to find support and encouragement, no matter where we lived.

Early in the 2000’s, I decided to hold a gathering, a reunion of people who had battled Hodgkin’s Lymphoma.  I would hold it at my home, though everyone would stay nearby in a hotel.  We had about a dozen or so guests who brought their loved ones and had a great time.  I arranged for some guest speakers to talk about post care and such.  And then we had some fun, food, and more fun.

Ian’s last name suited him, “Large”, because that is how he lived his life.  He was the hit of the gathering.  His humor and enjoyment were infectious.  Everybody seemed to enjoy their time so much more.  Even my dog go into the act.

Ian was also physically bigger than me, standing only at 5’7″.  The joke that stayed literally forever, even up to this day, having too much fun, using the ladder to climb out of the pool, Ian had stepped on one of the rungs, and it broke in half.  Though I would never see Ian again in person, we kept in touch, and almost symbolically, the ladder never got repaired even to this day as if to have repaired it would have been like a closure of some sort.

Besides the fact that I no longer live in the house now, the ladder will be repaired.  The ladder is producing a closure.  At the same time, Ian passed away in the last couple of days.  Out of respect for his wife and family, I will not discuss the circumstances, but, like me, Ian had his own long term issues from treatments for his Hodgkin’s.  When we knew each other back then, neither of us were affected yet.

Over the years, we kept in touch, and through Facebook, we were able stay in touch.  Affected by my late effects more than 10 years ago, the way I lived my life had to change.  I was no longer able to do certain activities.  The hard part was balancing what I could do.  The hard part was getting everyone around me to understand, my life was never going to be the same.

I admired Ian, because like I said, he loved to do things “large”.  I envied all the things that he was still able to do, before he had to deal with his issues, and perhaps even after learning of them.  He is not the only long term survivor able to overcome the limitations we have.  But sometimes our decisions to ignore, or “move on” and pretend they never exist, can also lead to our downfalls.  Again, Ian was known to do what he wanted, and he had a great time doing it.

Ian was married to a wonderful woman.  And if anyone knows how large fun was with Ian, it is her.

My deepest sympathies to all of his friends and family.


28 Years… Approaching A Milestone In Survival

I woke up this morning, logged on to my computer, and the “counter” on “Paul’s Heart” was the first thing that I saw.  And as my counter is programmed, counting down days and months, it does not get any simpler than on this date, years to go.  I am just two years away from the milestone of 30 years, cancer free.  The math, 30 – 2 = 28.  Today, I received my final chemotherapy for Hodgkin’s Lymphoma, 28 years ago.

Early on in my survival, I often looked at my survival very casually, like no big deal.  It was just something I knew would happen.  But as I got in to the second decade of my survival, things became difficult.  And during my third decade, well, just go through my archives, and you can see the many struggles I have faced over the years.

And I do appreciate the positive thoughts and congratulations, I really do.  However, it is the same for me every year.  As I realized I made it another year, I know so many who are struggling right now with their Hodgkin’s or the late side effects from their treatments.  Worse, I remember all of those who have passed away, their bodies no longer able to tolerate the accumulative issues.

I am quickly becoming one of the “old timers” in  the circle of survivors, those who have been out of treatment for decades.  I am also becoming one of the longer survivors as sadly, many have passed away.  Last year was an especially tough year for me emotionally.

There have been many changes in my life over the decades.  My doctors had begged me for years, to finally give my body a chance.  While they said they could not cure me of the developing health issues from radiation and chemotherapies, they did assure me they could slow the process down.  The goal was put into its most meaningful to me, “to see my daughters graduate, get married, and to be a grandfather.”

From the years 2008 through 2012, I did the exact opposite of slowing down.  With my personality, I wanted to prove following my open heart surgery (from radiation damage), I was going to be the exception.  Instead, I tried pushing myself harder and harder and all that resulted was multiple trips to the emergency room.  I was going in the opposite direction of what my doctors wanted.

I made the changes I needed to finally.  And now I believe I have the chance to see all those things in my life happen.  My youngest daughter is at the age now, where she realizes just what I have gone through in my life, even though my experience was decades before she was born.  Both of my daughters understand the many health issues that I deal with, and lay ahead.  As my youngest puts it, “Daddy, you are one of the strongest people I know.”

One thing that has not changed, I remain the advocate I swore myself to be 28 years ago.  I remain active in the cancer community via group and individual support.  I continue to meet patients and other survivors, offering encouragement and support.  While treatments and survival have improved, it is still no easy task to deal with, and we all have our own unique ways of dealing with them.

So, as I usually do today, I recognize 28 years of survival.  I do not celebrate it.  I have met hundreds of other patients ad survivors in person, and have “met” thousands over various internet support groups.  I remember those who have passed away.  I think about all of those who are either going through treatment or dealing with late developing side effects.  But this year, also in the front of my mind, are two friends in particular, one just newly diagnosed, and another having recently dealt with a major side effect less than two months before she gets married.  The following is just a small collage of all the people who came into my life (with the exception of my dad) who have faced their own battle with cancer, since March 3, 1990, and knew or know, that I will always be there for them.

Mike, Wish You Were Here

I must admit, I have been a die hard Seattle Seahawk fan for over 35 years.  I was raised on Philadelphia Eagles football though.  As a Seahawk fan, I remember all too well how frustrating it is to go without an opportunity to the big game, the Super Bowl.  But living in southeast Pennsylvania most of my life, I can tell you first hand, Philly fans are definitely thirsty for this one.

I recently came across these photos.  My late brother-in-law Mike, was a huge Eagles fan.  Actually I believe he enjoyed all Philadelphia teams.  My brother-in-law passed away from Lou Gehrig’s Disease (ALS) several years ago.  Though I know he had wished it was under different circumstances, he got an opportunity to meet some of the Eagles years ago during training camp.  You might recognize the player wearing the visor, John Doronboss who performed magic making it to the top 10 on America’s Got Talent a couple of years ago.

I am not sure of Mike’s final spiritual resting place, but I do know this.  He will be enjoying the Super Bowl, and with any luck, downing some Jack and Coke.

I wish you could be here Mike, watching the game with all of us.  You are missed as a friend, a brother, and a confidante.

This is a hat that was given to me by Mike.  So for you Mike, I am going to be an Eagle fan for a day.

Fly Eagles Fly… on the road to victory!  Fight Eagles Fight!  Score a touchdown 1, 2, 3!  Hit ’em low!  Hit ’em high!  And watch our Eagles fly!  Fly Eagles Fly!  On the road to victory!  E-A-G-L-E-S!  Eagles!

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