Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Family and Friends”

Remembering Mike

Another year, another anniversary of the passing of one of the best people to come into my life, my brother-in-law Mike.  It is seven years ago tomorrow that he lost his battle with ALS (Lou Gehrig’s Disease).  I had only heard of the disease watching the classic movie “Pride Of The Yankees”, based off the story of Lou Gehrig, who the disease was named after.  And as unfamiliar as I was with ALS until that time, Mike would be one of three people I would witness face, and eventually pass away from it, within a three-year time span.

Mike, you were like a big brother to me, and I still miss you so much.  You gave me so many laughs, encouraged me, and when needed, gave me the stern talking to just like an older sibling would.

Prior to his passing, a fundraiser was held for the ALS Foundation by Mike.  It was an extraordinary event, and I am so glad that Mike got to witness the amazing outpouring of support, and the huge success that it was.  It was exhausting for him, but also memorable.

Since his passing, I have tried to continue to live my life, as if Mike were still here.  I have no doubt the support he would continue to give towards the fight against ALS.  Much like when he did his “polar plunge,” definitely thought he was crazy to do it, especially given his condition, when the “ice bucket challenge” came out, I did my part, in dousing myself, as well as challenging others.  But also, I would share events that I would become aware of, because this fight still goes on.

If you live near the Royersford, PA area, there is an establishment called Stickman Brews.  They are hosting a fundraiser on September 28th which will benefit the fight against ALS.  Please consider stopping by, and have a pint of ALS Will Anoia in Mike’s memory, and for a good cause.

Mike, I miss you.  Your nieces miss you.


Preparation For Chemo – Part 3

Of the three parts of this series, I have saved the most important for last.  Why?  Because there is no factor more important, than the mindset of the patient, especially as they head toward a fork in a road, where both roads are a potentially fatal choice.  One will kill you for sure, the other has the potential to kill you.

My team of medical providers seemingly complete, I went to my pre-chemo appointment to make my final arrangements  to begin.  All of my testing was done.  What happened next, I was not prepared for, and evidently neither was my doctor.

I checked in with the receptionist, and sat down waiting to be called back to the exam room.  As always, there was a stop by the lab to draw my blood, and into the second exam room on the left I went, with a legal pad under my left arm, a pen clipped to the pad (we did not have smart phones to record conversations, had to take any notes the old fashioned way).

I had chosen Dr. M to treat my Hodgkin’s Lymphoma for one reason only.  Though I referred to him as older than dirt, he did cure my grandmother of her breast cancer just five years earlier.  I could overlook him being long in the tooth, and the fact that the bedpan had more of a personality than he did.  This was going to be the guy to get me through this ordeal.

Dr. M. closed the door and sat down on his stool in front of me.

Dr. M:  So, we have gotten all the preliminary testing done.  How did you make out with the sperm harvesting?

Me:  They said there was not enough to be worth storing.

Dr. M:  You should have insisted anyway.  One could have been enough for you to have a family.

Me:  But, I…

Dr. M:  Ok.  Your heart scan and lung tests came back good.  They will be able to tolerate the chemotherapy plan.  It’s my understanding you would be okay with starting Friday (2 days later)?

Me:  Yes.  Because I would not have to miss much work for my treatments.  I would just leave an hour early from work, and have the weekend to rest before going back to work on Monday.

Dr. M immediately began to stand and walk towards the door, appearing to have finished our appointment.

Dr. M:  Very well, that is okay.  Will see you Friday afternoon.

Me:  Excuse me doc?

Dr. M turned around having already mentally concluded the appointment.

Me:  I have some questions about going through the chemo.

Dr. M slowly and hesitantly turned around, looked at my left hand, which had now exposed the first page on the legal tablet to be full of writing.

Dr. M:  What is that?

Me:  Like I said, I have some questions.

Dr. M had not even seen the second page of questions.

Dr. M:  Are you serious?  I don’t have the time to spend with you answering all that.  You will have to talk to the nurse.

And Dr. M walked out.

As I mentioned earlier, my team involved with reaching my cure, was almost complete.  Dr. M did not realize, or did not care, there was another member of the team.

Dr. M did not acknowledge me as a team member.  Without me, there would be no treatment.  Yes, I know that would mean that I would die.  But I had serious questions about being given drugs that were so toxic, that were going to not just kill the cancer cells, but many of the good healthy cells in my body as well.  Going through chemotherapy is not just a physical battle, but a mental one like none other you face in your life.

I was not considered part of my team by Dr. M.  And that is where he was mistaken.  In this case, and others like mine, there is actually an “i” in team.  And yes, I know the punchline, it is in the “A hole”.  And the minute you start to advocate for yourself, the reaction is to actually respond to you as if you are being an asshole.  But there is no doubt about it.  I was a member of the team, the most important member, not just because I was the patient, but because without putting the fires out in my mind of all the concerns that I had, I was going to die.  Just because a doctor did not want to answer my questions.  And yes, I acknowledge there were a lot of questions, and they all pertained to what I was about to go through.

For my own sake, I, and I repeat, I was a team member, I needed to advocate for myself.  If you remember anything from this post, or anything on “Paul’s Heart,” it is the importance of advocating for yourself.  In most cases, it will make a difference, especially if you do not have the confidence in others to get your through your difficult time.  You must do what you need to do, to get through.

I was about to break down completely as a nurse walked in.  She introduced herself as Brenda.  She did not give her last name.  She was old enough to be my mother, a fact that I will talk about later in another post.  She introduced herself as the nurse that would be administering my chemotherapy.  I did all I could to fight back tears of fear.  Because at this point, I was prepared to die, preferring quality of what would be left of my life, rather than dealing with the uncertainties that could come because of chemotherapy.

Brenda:  Good morning Mr. Edelman.  My name is Brenda.  I am your chemotherapy nurse.  I understand you have some questions that you would like answered before we begin.

This did not begin the way I thought.  Dr. M said he had no time to talk to me about my questions.  So he sent someone in to do it for him?  No.  I wanted the doctor, not a nurse.  I wanted the knowledge, not the routine.  As if she knew where my mind was at, the doctor had the personality of a bed pan, she spoke:

Brenda:  Dr. M is a good doctor.  He is also quite busy.  And he does care.  He just cannot show it.  He cannot open himself to personally caring directly with a patient.  Dr. M deals with a lot of patients.  Many survive.  Some do not.  He has been at this a long time, and he has lost a lot of people he has cared about, and it is his demeanor that protects him from any further hurt.

Me:  That’s all well and good.  But I need to know what is going to happen to me.  He saved my grandmother’s life.  I trusted him.  I thought he would care.  I no longer feel that way.

Brenda took the time to answer ALL of my questions, two pages worth.  Questions that dealt with the drugs in the chemotherapy cocktail, side effects, what to do in the case of…, and more.  And after nearly an hour, she offered me one more suggestion.  She heard something in the questions that I had asked, and the comments that I made.  She recommended one more member for my team.  Someone to talk to.  Someone who had experience with patients who struggled not only with their diagnosis, their treatments, but their survival.

I had one more appointment to make before that Friday.

I Will Always Remember

There are moments in our lives, that will forever change our perspectives, our fears, but hopefully not who we are.

I was not born when John F. Kennedy was shot.  And I was too young to understand the Vietnam war when it happened.  The first major event in history during my life, occurred in January of 1986, the space shuttle Challenger disaster.  I was working retail in a mail, when the mall music was interrupted by an announcement, that left everyone inside of my store, standing silent.  The Challenger had exploded shortly after lift off, killing all members aboard.  You could tell the impact this had on everyone, even without seeing it on a television, the description of the event, the horrific tragedy, the loss of the crew.  This particular mission was special because for the first time, it had a regular civilian as part of its crew, a teacher.  I do not remember how long we all stood in silence, not moving, paralyzed but what we could only imagine what others were seeing.

September 11, 2001 would be the second day in my life, that I would not forget where I was, what I was doing, and what had happened.  Only this time, I witnessed it, live on television.

Like everyone else that day, just going about our normal routines, I was at work.  We had a regularly scheduled break at 8:55am, but it was not unusual for some to begin their break earlier.  I had made my way downstairs to our smaller break room area, a small nook with four chairs, a counter top, and a small television.  As I turned the corner after exiting the elevator, I was surprised to see a huge crowd bursting from the limits of the small area.  Perhaps a birthday was being celebrated or some other reason for so many to be present.

As I got nearer, I could tell there was no celebrating.  In fact, everyone was quiet.  The attention of all was directed at the small television that normally was a source of fun and laughter.  Except for this time.

We could only watch the NBC affiliate out of Philadelphia.  The Today show had just announced that a plane had crashed into Tower 1 of the World Trade Center.  At the time, all we could think about was how awful a tragedy this was to have happened, what could have caused the jet to fly so low, and not be able to avoid the skyscraper.  And as quickly as some started to theorize about a possible terror attack, we all witnessed the second plane crashing into the second tower.

Though the broadcasters would not come and say it, each and every one of us in that break room, and likely in the world, knew we were under some sort of attack.  By who, by what?  We all watched and waited to see where the next target would be.

We all just continued to stand around watching this even unfold, as emergencies were declared, restrictions put in place, and then even more unthinkable, the collapsing of the towers, and two more planes crashing, all determined to be part of the same terroristic plot.

Our break time had rolled into our lunch break at 11am before any of us knew it.  We were all in shock.  How could this be?

I lived two hours away from New York City, but I had traveled there plenty of times.  And I will never forget the first time I came out of the Lincoln Tunnel, seeing the new skyline, without the Twin Towers.  But my memories of that day pale in comparison to those who lost loved ones that day.

Another first for me, knowing someone who had perished in such a historical, and tragic event.  Throughout the different aspects of my life, I would quickly realize those who had been on those fateful planes, first responders – people who basically went into a war zone, and friends who either lived in Manhattan or worked there.

We are reminded every year to “never forget.”  Whether there in person, or viewing the tragedy on television, this is something impossible to forget.  My daughters are now at an age in school, they are learning about what happened that day, before and after.  To talk about this with my daughters, I have the same emotion and impact, as when my grandparents would tell me the day the bombs were dropped on Japan, and yes, when Kennedy was shot.

I know I am not the only one who never wants to see another “9/11”.  And that is why it is important to never forget.  To never let it happen again, and to remember all who lost their lives, and those who lost loved ones.

Post Navigation