Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “May, 2013”

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)

Patient versus Caregiver


I apologize.  As you will see by this post, it has been a long time since I have written, but you will also see why.  But finally, here is post #199.

Several weeks ago, I received a phone call from my father.  His doctor was expressing concern over a spot that had been found of his left lung on a CT scan.  My father could not understand ordering a CT scan for just a simple cough.  As it would turn out, he would be diagnosed stage 1, non squeamous small cell carcinoma – lung cancer.

His scheduled surgery was for May 13th, the day after Mother’s Day.  It may have been Mother’s Day, but my mind was completely preoccupied with my father’s pending surgery.  Because of the early arrival, I had planned to spend the overnight with my dad, which would have the benefit of providing alternative conversations, to distract him of his concerns with the pending lung removal.  But with my previous scheduling balancing my employment and my campaign for school board, I had hit what I thought was my burnout point.  Evidently not.

My brother and I made final arrangements with each other in regards to post-care for my dad, and constant care for my stepmother.

Day #1

Monday – it had begun.  My dad was prepped for surgery and the anesthesiologists had come into his holding room.  The “A Team” I will call them had given some good news, that they were going to provide an epidural which would seriously help with pain.  My dad was prepared to lose the entire lung as the surgeon had warned.

When the surgeon called, he informed me that my dad was fortunate or unfortunate depending on how you wanted to look at it.  Only the 1/2 of the lung came out.  The other half of the lung, and other lung was fairly riddled with emphasema and he most likely would never be able to survive that surgery.  This partial lobectomy would be his best bet for recovery.  Possible radiation therapy loomed upon recovery.

When everything was completed, my father was moved to Intensive Care Unit, and there he was.  Of course there was pain, but with my own eyes, I saw my dad survive cancer surgery.  I had no doubt that he was going to get the best care because as I stepped off the elevator, I realized where I was, standing outside the same intensive care unit where I had been more than five years ago, recovering from my own major heart surgery.  In spite of overwhelming flashbacks, I was able to remain focused on making sure that my father was being taken care of.

Day #2

Tuesday

My father was transferred to his own room for the duration of his recovery.  Ironically, his room is directly across the hall from where my room was on the exact same floor.  But instead of a growing alertness and recovery, something is wrong, horribly wrong.  His symptoms are stable, but he is not retaining consciousness.  Having been through enough procedures, I chalk it up to the pain meds just keeping him real sedated.

Day #3

Wednesday

However, by today, my stepbrother Ralph and I both agree, this is not normal behavior.  We did our best to convince the nurses that something was wrong.  He was not touching his food and had not eaten in nearly four days now.  Remembering that I had been told he struggled with his breathing while in recovery, and knowing how important oxygen is to the brain, challenged the nurse and a call was put into cardiology.  They would attempt and MRI later that night, but of all times for him to be “aware”, that is when he chose and would not cooperate.

Day #4

Thursday

The doctor did not even attempt to do another MRI on my dad, instead they chose to do a CT scan.  It should have come as no surprise, but was definitely a disappointment to find out that my father had suffered two strokes at some point either during or after the surgery.  It seems that some substance or article had broken loose, most likely from one of his heart valves, and had travel into the very carotid that had just been cleaned out a few months back, completely blocking it.  Removing the blockage carried too much risk, but so did the load on the other two arteries.  The doctors had decided on Coumadin therapy.

Day #5, #6

Friday and Saturday

It was more of the same, visiting with my father, and while having a small conversation, he would stare off.  But a new symptom was developing, a racing heartbeat.  Just sitting or lying no his bed, resting, his heartbeat could jump as high as 190 beats per minute.  The doctors scrambled to find out the cause as well as relieve or stop the symptom.  Though my father had become a slight bit more alert, he gave no obvious sign that he could feel when these episodes would occur.  But they would also not remove him from his bed or chair, which they needed to get him started not only to get him out of the hospital, but to avoid any further complications such as pneumonia or blood clots.

Days #7, #8, #9

Sunday, Monday, Tuesday

My father still was not eating more than two or three bites of his meals.  Conversations with him would often be lost and you could tell not by his nodding off anymore, but his eyes would grow large as confusion sunk in as he tried to survey his surrounding environment.  But the staff has  begun to do something totally unexpected given my father’s condition.  Doctors are starting to tell him that he should be going home.  WHAT!!!  My father is my stepmother’s caregiver and he cannot even take care of himself.  We do not even know the results of the cancer pathology yet.  But a decision is coming, he must be moved to a rehab facility for not only his surgical needs, but now to recover from his strokes.

Day #10

Wednesday

My dad is moved to a rehab facility and is now more confused than ever.  He honestly believes he is at home.  It is almost as if the took the facility and dropped it right over top of his home, like an overlay.  The layout of the floor is very similar, but his actions only confirm his confusion.  He has three hours of diverse therapy ranging from speech, physical and occupational.  Occupational does not just pertain to returning to work, but to functioning in the home when you are discharged.

Day #11

Thursday

Every day my dad seems to be making some progress.  Clearly Ralph and I are exhausted but we are determined that he must get through this.  We make sure that observations that we make during our visits with him are communicated to the staff so that they can be dealt with or concentrated on during therapy.  Just the simplest comment, that he ” could not remember what he ordered for dinner” that day, is key to dealing with a stroke recovery.  Plus, case management is now talking about discharging him within a week.  It seems impossible to me that a prediction like that can be made with a person who is unable to recall what prescriptions he has taken, will not only be expected to take care of himself, but my stepmother as well who relies on his care for injuries she sustained nearly two decades ago.

Days #12, #13, #14, #15, #16

Friday,Saturday, Sunday, Monday, Tuesday

There is continued improvement.  The days have really become a blur for me.  All that matters to me is that my dad continues to improve.  The insurance company has weighed their opinion and granted my father more time in the rehab facility.  Duh!  He needs it.

Day #17

Wednesday

Shortly after I receive the phone call from my father’s caseworker at the Rehab Hospital, my dad is told he can expect to be discharged to go home in a week.  There is disappointment for him, and clearly he still has deficits.  But the facility claims they can no longer keep him.  In spite of our protests, we must now plan for him to return to his home, with his wife next week.

I have counted the days on this blog, but at this point, I really do not know how long it has been or what day of the month it is.  It has been so hard to watch my father go through what he has.  It was much easier for me to be a patient and go through what I went through than be his caregiver.

Once You Let A Fart Rip…


You cannot “unstink” a fart.  It is going to stink no matter what you do to try and cover it up.  You cannot take it back.  It happens and often it is going to clear a room.

Just like you cannot take back things you have said, like in a jury, or an argument.

I learned a most valuable lesson from my father, though I wish I could have learned it a different way.

It was many ago, just days before the Christmas holiday.  By now, my dad and stepmother were done with the holiday shopping, or so they thought.  A minor argument ensued, I believe over insurance, when they realized they still needed a last minute gift.  From the argument, frustration was added as they prepared to head out into the holiday rush traffic.  My father would leave the house first, cross the street and start up the car.  He glances out of the driver side window, to see where my stepmother could be as he thought she was right behind him.

It was dusk as the evening sun had settled.  Headlights were now being turned on to see the path in front of them.  Except for one vehicle.  My dad waits for her to cross the street and sees that on her side traffic is letting up that she can now cross to the middle of the busy street.  She continues her path across the west bound lane just inches away from the front fender of my dad’s car.

She never knew what hit her.  All my father saw was his wife of nearly two decades be thrown dozens of feet from where he just saw her.

I do not know much else about the next several hours as my father does not talk about that night.  By the time that I had received the phone call about what had happened, it was very early in the morning of the next day.  But the news was not good.  She had sustained major life threatening injuries besides her one leg being broken, a severe head injury.

But what my dad will talk about, and to this day, is the guilt that he carries from that night.  That he never got to resolved the argument that he and my stepmother had that night.  They never got to apologize.  This would go beyond “go to bed angry”.  They would never get that chance to apologize.  To make matters worse, there are things that compiled on to his list of guilt.  He apologizes frequently for not being there for my sister and I following my parents’ divorce.  He apologized for missing certain milestones in our lives.  He carried guilt about not being there for my battle with cancer.

On Monday, I will stand next to my dad, as he faces his biggest fight of his life, his own battle with cancer, lung cancer to be exact.  And this goes beyond blame or guilt.  This is now about survival and the chances that lay ahead of him.  Beings somewhat familiar with medicine and cancer terminology, I feel very good about his chances of beating it.  And I hope that as he knows I am standing by his side, I have long forgiven him for our past.

“Dad, just do this!  Madison and Emmalie love their Poppop and know that if Daddy could beat his cancer, and you are his dad, then you can do it too.”

Post Navigation