Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Side Effects”

It Is Just Not Fair


I am a thousand miles away from a good friend.  This is a friend that I came across by chance, and given the millions of people in our country, “chance” is really an understatement.  Tonight, as I write this, he is facing his most difficult battle, fighting for his life, which at this point, after two days, have still yet to find out what has caused his body to fail him.  When you talk about “body failure” the first thought is likely “how old is he?” assuming that being a little long in the tooth would somehow justify the body developing serious illnesses and such.

But he is not old, far from it.  He is a young adult, too young, still a boy, a child.  He has barely experienced life.  And for the second time in less than a year, he is in for the fight of his life.

We share a similar circumstance, at the same age, we were diagnosed with the same cancer.  And though decades apart, with different treatments, we both experienced successful remission.  But there is a crap shoot when we take on cancer, that perhaps the treatments may be worse for us than the cancer itself.  For me, it took eighteen years to find out just how bad the late side effects had become, the damage from the treatments that have given me 23 years in remission.  For my friend, he has barely gotten past two months of recovery from his chemo.

He now lies in a bed, in intensive care, breathing with the help of a ventilator, awaiting air transport to a hospital far from home, a facility better equipped to diagnose and treat, and send my friend back home.  They have to send him home, they just have to.  Currently the doctors are baffled as to what has gone wrong.  A seemingly small symptom has erupted from a spark to a widespread brushfire, threatening to take his young life.  Did the treatments leave his body’s immune system compromised to a brutal virus?  Did one of the drugs used in his cancer treatments catch up to him with cardiac damage?  Is it something totally unrelated to his prior battle with cancer?

Just as with his cancer battle, his family has often turned to me for advice and direction.  Hoping that somehow my experiences may shed some light on what to look for that has brought two parents to an ultimate surrealness, a nightmare.  And all the parents can do is just put their faith in the doctors as they face yet another hurdle.  He is to be transported via helicopter to the more experienced hospital.  The parents really have no say if they want their son to live.  This will be his best chance to survive, to beat what is challenging him.  It is just not fair.

Back when I was diagnosed, I changed oncologists because I didn’t like my doctor’s bedside manner.  He was boring, did not want to seem to spend a lot of time with me, let alone make small talk.  When I started counseling cancer patients I found out why.  Yes, I knew cancer was bad, but I thought just for the patient.  Quite the contrary.  The first patient I cared for was a 14 year old girl also diagnosed with the same cancer.  Her story ends tragically at the age of 17.  I was devastated having spent over two years with her, talking to her, listening to her, consoling her.  I learned the hard way, what my medical professionals were being criticized by me for, cancer is hard on the caregivers as much as the patient, just in a different way.

Survivor guilt crashed down on me severely, enough to make me withdraw from something that I wanted so much to do, help those who were going through what I went through.  I wanted to give hope to an awful disease.  But fate had decided that she would not survive, while I would.  It is just not fair.  I would return to counseling in a few months, but with the bedside approach that my “fired” oncologist used, detaching myself emotionally from the crisis at hand.  And for two decades this worked.  I have met so many cancer patients and survivors.  And while many have survived, I have also said goodbye to too many.  In most cases, I was not involved with them long enough to get emotionally attached.  For those that beat their cancer, we celebrated.  For those that lost their fight, or were challenged to hard by late side effects, I mourned and moved on.  That simple.

For my young friend, I have followed him pretty much from the beginning.  Counting along his treatments, one by one, and the subsequent shots to help boost his immune system and blood counts.  Never once hearing him complain about what he was going through.  He simply did what he had to, and he beat his cancer.  It is just not fair that just as he regained his strength, began to grow his hair back, and began to get back to the life he led, he is now fighting to hang onto that same life.  It is just not fair.  My survivor guilt has returned in a huge way, why him and not me?  Advances in medicines to treat the same illness were supposed to lessen the toxicity and side effects.  I had way more exposure to chemicals and even radiation, and had more time to enjoy my remission.  It is just not fair.

For only the second time, I am knee deep emotionally involved with my friend’s situation.  It was not supposed to happen like this.  For the last forty-eight hours I have been begging the God I believe in to help my friend.  I have begun to reach out to anyone who will listen, who believe in whatever they believe in, to send prayers or at the least, positive thoughts to him.  I do believe he can get through this, I really do.  I need him to get through this.  He has so much to experience.  I would trade with him in a heartbeat to give him that chance.  But it does not work that way.  It is just not fair.

Fight my friend.  You fight with everything you have.  Your family is by your side and they know you are with them, fighting all the way.  Your friends are thinking of you, praying for you, hoping for you to come home real soon.

Ichiro Suzuki, Pete Rose, Ty Cobb, and Paul Edelman


Ichiro Suzuki, Pete Rose, Ty Cobb, and Paul Edelman.  We all share something in common with each other.  Alright, we have to eliminate the obvious using the method used on standardized tests… which answer does not fit?  Paul Edelman.  The other three names are/were professional baseball players who hit for over 4000 career base hits.  Each time, the impossible became possible.  Ty Cobb hit for 4000 career hits, a record never thought to be broken.  Then Pete Rose achieved that mark, followed by Suzuki.

In 2012, there were eleven quarterbacks who threw for over 4000 yards breaking a record 10 quarterbacks in one season.  Future Hall Of Famers, Drew Brees, Tony Romo, Tom Brady, Peyton Manning and Aaron Rodgers just to name a few.

The late, great Wilt Chamberlain is the only pro basketball player to ever score 4000 points in one season.  The season being the years 1961-1962.

Sorry hockey fans… and I am disappointed as well there are no 4000 goals or points scored.  Goalie Devan Dubnyk of the Edmonton Oilers has stopped over 4000 shots as have Roberto Luongo, Henrik Lundqvist, and bizarre former Flyers goalie Ilya Bryzgalov.  I looked for any hockey player who might have racked up 4000 penalty minutes and the closest I could come was a player by the name of Tiger Williams (Toronto Mapleleafs) who retired just short of 4000 with 3966 minutes.

There has been no physical demand on my part to reach 4000 views on Paul’s Heart, just the will to put my thoughts down into written form.  I would like to think that there are more in my household who would be excited for me, especially my oldest daughter who is not really fond of reading.  You would think she would see that so many have read what her father has written and have that motivate her, but to my disappointment, nope.  Nonetheless, for the guy who’s college English professor once wrote while grading one of my papers that I “don’t have the intelligence to get past a comic strip page”, I think I can, and have done so.

I now set my sights on a new goal, 5000 views.  Thank you so much for encouraging me with your comments and support.  Darlene, thank you for suggesting this be my outlet for my thoughts in pursuit of that book I want to write.  And to everyone, I have over 100 more stories already started, not including the ideas that pop in my head daily.

As usual, I constantly run into new experiences that I want to share with you, in hopes that somehow, you will see, you are not alone.

Thank you everyone for reading Paul’s Heart.

 

Sometimes It’s Not Good To Look Ahead


One of the most important pieces of advice I can give any cancer patient, as an experienced patient and survivor is, “do not look at your calendar and an end date for your treatments.”

It is only natural once you are diagnosed with a cancer, and told how long you will be undergoing treatments, to look at the calendar and see just when it will all end.  An end goal is always a good thing, however, going through cancer treatments is such a struggle.  That is why we all dread going through it.  The stereotype alone is enough to cause us anxiety.

But imagine the following scenarios:

1)   you are a patient scheduled to undergo 12 cycles of a treatment plan.  This could mean 24 weeks or 12 months.  Watching the calendar could make it feel impossible that you will be able to reach that end.

2)  prior to starting your next treatment, your blood counts are off, and you are told you will not be able to undergo your next treatment, thus pushing your end date further than you had planned.  Or perhaps you get the flu or some other infection.  Delays of treatments are devastating.

My dad recently found out about this philosophy of mine, first hand.  As we arrived to meet the oncologist prior to his treatment, the oncologist notices a swelling and discoloration in the hand that had received the chemo injection.  It had become infected and needed to be treated before the next treatment could begin.  It is possible that had my dad noticed it sooner, it could have been treated when it actually started to develop, but obviously had not.  He got the news no cancer patient going through treatment wants to hear, “we will have to reschedule you for next week”.

So how do you prevent this thinking from happening?  It is simple.  Keep the task at hand as simple as you can, worry only about the treatment you are currently undergoing.  Take each treatment one day at a time.  It is really that easy.

I should know.  My last treatment was delayed because I got the flu.

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