Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Uncategorized”

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!

Helping Those Affected By Harvey/Irma/Maria

For those of us that remember Hurricane Katrina and how it destroyed areas of Louisiana with flooding and devastation, we all had hoped that our country would learn to be better prepared for these natural disasters, especially in response.  Sure, hurricanes are unpredictable, we can accept that.  But as we learned this summer, after our southern states and territories have been pounded by three major hurricanes, we were still not prepared for proper response after the Hurricane Harvey hit Texas, resources dramatically thinned as Irma crashed into Florida, and now, the US territory of Puerto Rico, residents are US citizens, are impacted by governmental red tape, as well as the impact of FEMA being inadequately staffed and insufficiently budgeted, the effects now show.

I will be honest, I do not know what the budget for FEMA actually amounts to, and if there is actually a budget for so many natural disasters a year.  But clearly, vacancies in FEMA that still exist, reductions in funding, are leaving our country unable to respond in the event of an unprecedented season of multiple national disasters.

I cannot speak for Houston.  It seems like news coverage is now focused on Puerto Rico.  I intentionally did not say “rightfully so,” because after seeing the devastating flooding, and living in the hurricane zone of Irma, southern Florida, I know we are still cleaning up and are told, cleanup could take another 4 to 6 months.  While we had some flooding, it was nothing compared to Houston.  But as the media is concentrated on Puerto Rico, they truly are on an “island in the middle of nowhere,” which makes it hard to get help and relief.  Until this morning, a shipping restriction, called the “Jones Act,” restricted any non-US ships from carrying cargo into the ports of Puerto Rico.  This was preventing the massive amounts of aid needed for those in Puerto Rico.  My own opinion, I am still baffled by some of the restrictive decisions made by FEMA restricting air traffic in and out of Puerto Rico to either evacuate US citizens, or deliver aid.

So, what can we as individuals do to help?  Well, as Pitbull, Mark Cuban, and other notables are demonstrating, they are making a difference with the resources they have.  Obviously, they can afford to send their own private planes and offer other assistance.  But you do not need a million dollars to help.

I am certain you must be aware of hurricane victims getting ice and water distributed to them after a disaster like we have gone through.  This picture is the contents of a box prepared by a contractor for FEMA, which basically will feed an individual for a day, three meals and snack.  Not too sure how good the container of milk is, but it is stated that it was prepared to be stored at room temperature.  But boxes like this, are handed out at distribution sights.

Following disasters like this, many concerned people look for ways to help.  We are always encouraged to donate to the Red Cross.  But the one drawback to me, someone who wants to make a difference now, following Katrina, there was a likelihood that anything donated for Katrina, would not go to Katrina victims, but most likely stored in a warehouse for the next disaster.  What difference should it make who it helps as long as we help, right?

Puerto Rico is in horrible shape.  They need help now.  There is no time to wait for the government to follow steps and procedures and other bureaucratic red tape.  I felt the same way when Katrina hit.  Which is what this food kit reminded me of.

Years ago, I ran a youth group, and yes, it was during the days of Hurricane Katrina.  And the kids wanted to help.  Together, we all created “shoe box kits,” which not only had some non-perishable foods and water, but also supplies such as toothbrush, toothpaste, toilet paper, even some small games like cards to distract or toys for children who might be scared.  More importantly, the kids all wrote a letter to go inside the box letting the recipient know that they were not being forgotten.  And it was hoped that the box would give them hope.

Instead of sending these boxes to the Red Cross, we sent them to a church outside of New Orleans, directly to a minister, and asked if they had any kind of drive to help the Katrina victims, to make sure that these disaster kits were given out.  And they were.  We actually heard back, not just from the minister, but some recipients as well.  I could never have been more proud of these kids for taking the initiative to help other more than a thousand miles away.

We were not as famous as Pitbull or Cuban, but all of our acts show that one person, or a group of people, can make a difference, especially when response by official organizations may be perceived to be either slow or ineffective.  You can make a difference.

Post Navigation