Paul's Heart

The Fighter – Post #200!!!!

It has taken me a bit longer to get to post #200 than I had planned.  In trying to balance my own cancer survival issues, my father’s health took a serious turn several weeks ago, and my energies have been concentrated on his recovery.  Two weeks ago, I gave a “Survivor” speech at the Upper Perk Relay For Life during their “Fight Back” ceremony.  I took one of the speeches I have used this year, and re-formatted it into a professional boxing narrative modeled after some popular boxing networks, having changed the names for satirical purposes to give the comparison of a cancer battle and survival to the fight for life.

And with that, I present post #200…

 

The Fighter

 

 Commentator:  Good evening and welcome to another great Saturday night of what has the potential to be the greatest gathering of fighters.  I’m John Lamplighter and I’m joined by my co-host Lenny Albert.

 Lenny:  How’s everyone doing tonight?  Great to be here John.

Lamplighter:  One of our feature fighters this evening is a local guy hailing from Lansdale and a solid veteran fighter.  For more we go to our field reporter, Joe Noggin.

 

 

Noggin:  Paul Edelman is no ordinary fighter.  Living with cancer nearly half of his life, he was diagnosed by accident, the common cold.

Paul:  I just discovered this lump in my neck, and it just wouldn’t go away.  My doctor wasn’t concerned about it because of its location, and gave me an anti-inflammatory.  The swelling went down, but when the meds stopped, the lump came back hard and furious.

 

Noggin:  Weeks later, and several second opinions, Edelman was diagnosed with Hodgkin’s Disease at the age of 22, stage 3b.  The testing used is now obsolete, and the treatments he went through are only used as a last resort.  Both of these conditions due to progress in research, assited by funding from events like the Relay For Life.

Paul:  It’s just amazing.  In less than 25 years, researchers have found easier methods to diagnose cancer and safe methods to treat cancer.  Side effects are fewer and less severe.  And more people are surviving.

 

Noggin:  Edelman’s story is nothing less than a miracle.  Decades ago, all the common person believed was that everyone died from cancer, that you could catch cancer from other people, that having cancer was something to be ashamed of.  Tonight, Edelman continues his fight in his survival and life with cancer.  Now let’s go back to the ring as the ring announcer is set to begin.

 

(bell rings)

Ring announcer:  Ladies and Gentlemen, boys and girls, welcome to Upper Perk’s Relay For Life for a great Saturday evening with the toughest fighters you will ever meet.  Some are just in the beginning stages, others, ring veterans.  Now… let’s get ready to battllllllllleeeeee!!!

Our current fighter was set for 30 treatments of radiation therapy and 8 rounds of chemo.  With more than 23 years since his last treatment, he recognizes that his life did not end with diagnosis, that his life is not defined by having had cancer, but lives in spite of having had cancer.  I give you, Paul Edelman

 

(bell rings)

Paul:  I had everything going for me.  I was getting married in six months.  I felt alone.  I was scared.  I never knew anyone who had gone through cancer, or at least lived.

 

(bell rings)

Paul:  I took every treatment, one day at a time.  Of my treatments, only 8 injections were going to make me sick.  And of those that made me sick, it was only going to be for 2-3 hours.  That meant I was going to really feel like crap for 24 hours or less, not for 10 months of the entire treatment schedule.  Completed one treatment, knew I could get through another.  Once I got half way, I knew I could get through the rest.  Once I was just two treatments away, I could see the end.  I knew I could do it.

 

(bell rings)

Paul:  The financial toll.  I was lucky.  I had health benefits back then.  Real good benefits.  But having to miss work for diagnostics and treatments was costly.  I saw unfortunate behaviors from my co-workers who felt that I was getting special treatment, to this day, I still don’t know what they were thinking I was getting.

 

(bell rings)

Paul:  I continued to see doctors for many years after my treatments ended.  They’re called follow ups.  They are to make sure the cancer doesn’t return, and that if for some reason, a late side effect develops, it can be dealt with early enough.  But my doctors forgot about me.  So I did not remind them.  Eight years later, on my own, late side effects made a huge impact on my life.  I wish I had still been following up with my oncologist.  They could have caught these things sooner.

 

(bell rings)

Paul:  I never realized how difficult it would be for me to develop my new normal.  Employers back then had not yet been introduced to the newly passed American With Disabilities Act.  Insurance companies made me angry throwing statistics at me as reason for not wanting me as a client.  Let me tell you about statistics, we are winning the fight against cancer.  Survival rates are increasing every year.

 

(bell rings)

Paul:  My wife and I divorced.  Chances are, it might have been the cancer.  I was diagnosed before we got married, but it was definitely alot for someone to have to deal with.  I wanted better for her and told her I would not be mad if she had not married me.  But just as hard, was dating.  Just as inconvenient as cancer being diagnosed, there is no convenient time to bring up cancer on a date.

 

(bell rings)

Paul:  I married again.  I have two beautiful daughters that we adopted from China.  I do deal with some late side effects, but they are managed because I still see the doctors.   Because of research, doctors now have a protocol to follow up on survivors, to make sure that side effects are dealt with.

 

(bell rings)

Paul:  I have reached a new level in my fight with cancer.  Telling my story.  It is my goal to show and tell as many people as I can, cancer can be beat.  We must continue to support research with funding and events like the Relay For Life so that everyone has the chance to survive.  Whether it be written word, or spoken, my story is real.  I stand before you,  a fighter, a 23-year survivor of Hodgkin’s Lymphoma.

 

(bell rings)

Paul:  One of my favorite movies is Rocky 2.  There is a part in the movie where Rocky’s wife Adrien lapses into a coma after giving birth to their son.  When she comes to and realizes that Rocky has been by her side the entire time, and he looks exhausted, she asks him to come closer to her, as there is something she wants to tell Rocky.

“There’s something I want you to do for me.”  And he looks at her.  “Win. Win.”  Just then, Rocky’s trainer yells, “what are we waiting for?”  And of course Rocky fights on for another four movies.  But that is exactly what I hope my story inspires you all to do.  Win this fight.  And tonight, this one is for my dad who is up at Lehigh Valley Hospital tonight beginning his quest as a survivor of lung cancer

 

(bell rings)

Paul:  My final round, I would like to leave you with this, an expression that I sign off with, when congratulating a patient on either remission or some milestone.
“As I continue down the road of remission, I will keep looking in my rear view mirror to make sure that you are still following me.  And if you haven’t gotten onto that highway yet, I will drive fifty-five so that you can catch up to me.”

 

(bell rings)

Friday, April 18, 2008 – A New Beginning

*** note – this is the final installment of retelling the events around the 5th anniversary of my life-saving double bypass heart surgyer.

The last thing I remember, is the chatter of the operating room, “he’s so young for this.”

Coming out of anesthesia was a controlled effort by the part of the doctors.  I had no idea what to expect.  But before I forget, if you read yesterday’s post, as you can see, it is the most powerful thing that I have ever experienced and to actually read that my heart was stopped, and emptied of blood, is just chilling.  Though my body was on a machine, used to pump the blood throughout my body, I guess technically, I was “dead” at that time.  But for those who are curious, no, I did not have any out of body experience.  But reading the surgical report, I could imagine what it was like in that operating room.

As my eyes open in the intenstive care unit, I saw Wendy sitting in the corner of the dimly lit room.  There were no windows so I had no concept of date or time.  She called for my nurse, a young man named Joe who came in, prepared to deal with any pain or panic situation I may experience as I come to grips with what has happened to my body.  Most importantly, I AM ALIVE!!!  I MADE IT!!!

I get picked on quite a bit for the rank I place myself as far as care and concern.  Evidently, with an 8 inch incision on my chest, tubes coming out from everywhere of my body, machines beeping and blinking, I suddenly realized something.  I was supposed to DJ a wedding reception tomorrow morning.  Yes, I actually did that.  Besides being a totally inappropriate time to be worried about something like that, I had no way to communicate it.  I was intubated with an air tube helping me to breath for the time being, and my arms were too weak to move.  Wendy came over, grabbed my hand in care and comfort, and I pulled it away to get her attention, and then pointed my finger.  Not really sure what I was doing, she finally gathered that I was trying to spell out something.

“I was supposed to do a wedding.  Call the bride.  Number is ###-###-####.  Tell her I’m sorry.  Call this guy instead.  He may be able to help them out.”  The look on Wendy’s face was shock.  I’m laying in the ICU just recently out of open heart surgery, and this is the first thing that comes to mind.  Later that evening, Wendy made that call.  And I so appreciated the understanding couple who expressed concern for me.

Pain and discomfort were an initial issue and another dose of Fentanyl was adminstered, and back out I went.  But later, and like I said, with no concept of time or day, I awoke to Joe back in my room, Wendy had left.  He was just going over my vitals and checking out all of the equipment.  He asked if I was comfortable, and for just having had my breast bone cracked open just hours ago and connected to all kinds of machines and hoses, I was quite surprised how comfortable I was.

Just then a familiar face came into the room.  It was Heather, my nurse from the day before.  She came to visit me, while during her shift break,  after hearing that I had to have this procedure done.  Before yesterday, she was a complete stranger to me, and today, she had as much compassion and empathy as someone who had known me my whole life.

There is a saying about being in the wrong place at the wrong time, and at that exact moment, Joe came back in, wanting to get me cleaned up from earlier in the day.  So Joe ended up recruiting Heather.  I was in no condition to protest.  And not that there is anything wrong with, was a little more comfortable having someone as easy on the eyes as Heather to take care of me (though for a dude, Joe had some good looks as well).

Joe had informed me of upcoming plans to get me out of the bed in the next few hours.  He went through a long list of things that I had to prepare for when this time came, such as carrying around all the extra tubing, IV lines, wires, etc..  The purpose was to just get me out of the bed and sitting.  I thought, “HOLY SHIT!!!  I just had my heart operated on a few hours ago and they are not even going to let me rest!”

If you are wondering what it feels like to have this type of operation, let me remind you.  Just days before, I had been spending over an hour on the eliptical machine (a stepper/walking machine) followed by another 45 minutes weightlifting in the gym.  This had gone on for months.  Obviously I was in shape, no?

Just sitting up, was exhausting for me.  How could this be?  I did not have anything else done with my body, my legs, my arms.  Okay, so my chest was opened, but how could I be so weak?

Like I said, I had no concept of time, but the time did come, I believe the next day, that I was moved to a private from the intensive care unit.  But here was the catch.  I was told that I would do it under my own power.  I do no think that the nurses expected me to do what I did, but I was determined.  Just the day following my open heart surgery, I walked what amounted to the length of a football field between two floors, with a wheelchair behind me to allow me the opportunity to rest, which I did not take.  It was a walk that I could make just days before, with ease.

I made it to my new room.  And I was exhausted.  Over the next couple of days, I was encouraged to walk.  But on the day after my arrival to my private room, I was found walking the stairways.  You would have thought that the staff would be happy to see my progress.  Not exactly.  But the bar had been set.  Physically I was well on my way to recovery.

But on my second to last day in the hospital, I found out that I was a long way from recovering emotionally.  It was early in the morning, and a group of people had come into my room:  caseworker, finance, physical therapy, occupation therapy, and clergy.

Up until this point in my life, I had done a very good job of controlling my emotions.  But after just a few words by the clergy, I lost it.  I fell apart.  I could not handle all of the care I was receiving.  It was not about believing in a higher power, which I do, but rather dealing with the fact, that I had now survived my second life and death experience.

I was reminded just one day at home from the hospital.  Wendy had stayed with me for the first week at home while I recovered.  While watching television, a story line in her soap opera had a character having open heart surgery.  It was too overwhelming and definitely too soon.  Again, I had lost it.  Wendy had not realized how sensitive I had become.

It has been five years for an anniversary I never thought I would have to see or ever thought I would.  Initially, I wondered just how long the bypasses would hold.  I no longer do that as I have realized, just as I once lived, much easier not to worry or obsess about it.  I would miss so much.

So here ends how my life changed a second time.