Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

05 May 2013

Being In Charge Of Your Care


We trust our doctors to make the right decisions.  In the old days, doctors were able to take their time and offer empathy which is critical to a patient.  A lot more time could be spent with a patient because the patient relies on the doctor, trusts the doctor to hear, listen, and treat.    But over the years something has changed.  Insurance companies.  Attorneys.  Pharmaceutical reps.  A doctor’s days appear to be split between patient and business.  I am sure there is much more that goes on behind the scenes that I do  not know.

Which leaves us with no choice, we have to speak up for ourselves.  The problem is that most of us do not know how to do that.  We do not even know the first step.  The two main players on your treatment team – you and your doctor.  Without having a doctor’s degree, we need to have things explained to us on a level that we understand.  We need to know what is about to be done to us.  Why are we being asked to take prescription drugs and what are the side effects going to be?  What was going to be the prognosis?

An oncologist with a personality less charming than a Fleet enema kit, in spite of his skills and ability, will not be my doctor if he cannot handle my emotional needs or is not willing to talk to me about the things that he is planning on doing to me.  I fired, yes fired, three cardiologists following my open heart surgery because once it had been determined by my lead doctors at Memorial Sloan Kettering that the heart surgery was made necessary due to past cancer treatments, and those terminated cardiologists refused to acknowledge that fact which would be critical in follow up exams and studies.

I would never look back or second guess myself.  If I could not understand what the doctor was trying to tell me, then the good doctor was going to take the time to explain it to me. 

My father was faced with that same position.  Being diagnosed with cancer is one of the scariest things we can be told.  It comes even more as a shock, when we do not expect to be told we have cancer.  But as I tried to explain to my father, just as had been explained to me decades ago, these  types of doctors deal with a lot of death.  They are very confident in what they do, but they cannot afford to be emotionally attached to each and every one of their patients.  Do doctors like that exist?  I am sure that they do.

But I told my dad, that since he had time on his side, reach out for a second opinion.  I also told my dad, not to be surprised if he ended up with someone else, from the same practice, which is what happened for him.  And this doctor met my dad’s emotional needs.  That gave my father the opportunity to pursue his options with clear thought, instead of being consumed with the thoughts of his dislike for a doctor’s bedside manner.

If you do not have time to get a second opinion, your doctor will and should tell you.  But if you do have that option at your availability, then by all means, when you are having something major done to your body, get that second opinion.  And if it ends up different than the first opinion, get a third opinion.  But it has to be our mouths, our minds, our decisions.

Posted in Bullying, Cancer, Inspired By..., Side Effects, The Heart | Leave a comment
30 Apr 2013

Counting Grains Of Sand


I remember as a child, and I see it in my own children, the excitement that builds with an upcoming holiday, birthday or vacation.  If I recall, that is what motivated me to look at a calendar, so that I could do the actual figuring myself as the grown ups around me did not share my enthusiasm.  I miss those days, alot.

As an adult, we can share that same excitment.  It could be a wedding date.  There were two exciting dates that Wendy and I had been waiting for, the days that our daughters would be placed in our arms.

But what happens when the event that you are looking towards is not going due to a happy event or occasion.  There are no party favors or souvinirs.  Instead, fear replaces joy.  Emotions and temperment run short.

One such occasion for me could have been when I had my open heart surgery.  I was lucky.  I had less than fifteen hours to think about the major change that was going to occur in my life.  The majority of that time was spent still coming out of anesthesia and going through pre-surgical testing.  When all was said and done, I really only had approximately five or six hours to worry about what life would be like.  The fact is, many people face open heart surgery, and unless it is due to a heart attack, that surgery may take weeks to be performed.

My Father now finds himself in that very situation.  A couple of months ago, he went to his family doctor for a chronic cough.  We are talking several months.  His doctor having already tried various modes of treatment, made the decision to order a very expensive test, a CT scan, much to my father’s objections.  As it turned out, jumping right to that test may just mean the difference between life and death.  And I do not say it that way for dramatic effect.

A little over a month ago, my dad was diagnosed with lung cancer.  More importantly, and in his favor, Stage 1, meaning that the tumor has not spread to other organs or other parts of his body.  His cancer was caught early.  His best option for treatment is surgery.  Unfortunately, it will not just be the tumor that is being removed, but his entire lung.

He has another couple of weeks before the procedure.  He has gone through a lot more than one person ought to experience in one life.  This no doubt will be the biggest event in his life as it will result in a major lifestyle change for him, no more smoking.  He had been smoking for 57 years and even with a major heart attack, and the beginning stages of emphasema, he was not able to quit.  My dad has now officially quit.  He is quite lucky.  I remember the “blackened” lung that was always put on display back in elementary health class as to convince us smoking was bad.  My dad’s lung does not look like that, which is surprising for as long as he has been smoking.  His cancer is currently a small tumor.  And if watching the calendar was not bad enough, getting rid of the cancer must be done soon.

Posted in Cancer, Family and Friends | Leave a comment
21 Apr 2013

SongPop


I love music.  I cannot put it any more simpler than that.  I am a third generation musician (vocalist for the most part) and have appeared to transfer that trait onto both of my adopted daughters.  When it comes to music trivia, I am the one most often in the family or circle of friends that people call for either hints or answers.  Buy my love of music goes well beyond that of nerddom.

I began singing around seven years of age, after hearing a recording of my grandfather singing the Battle Hymn of The Republic.  My grandfather was a popular man in our small town, and very well liked.  I heard stories of how much my grandfather meant to me from birth until he passed when I was not yet one year of age.

Over the next several decades, my voice would go in many different directions from choral groups to church choirs to karoake bars.  Of course there is always the car and the shower.

But as happy as music made me, it became a lifeline itself for me.  When I went through my chemo therapy, I created a soundtrack of music that would pump me up to fight my cancer from diagnosis to each particle of medicine versus each cancer cell.  On long road trips, the time goes by much quicker with an Ipod set to “shuffle.”   When I relax around the house, I usually just listen to any of the many music channels on the television cable.  And when I am at work, my ear buds help me to drown out the work-place gossip or hear the constant griping.  Yes, I try to make it as peaceful between my ears as I can.

So one night, in our tech lounge at home, also known as our family room (all four of us using either a laptop, Nook, or Kindle), Wendy calls me over to her laptop and says, “you have to try this.  Play it once and you’ll be hooked.”

In three weeks, I have gone from 50 games, to 113 games, to 227 games clearing a winning record of 23-2 versus opponents.  My one loss against an opponent who has been playing the game for a long time, and appears to have the same amount of experience in music as I do.  The other opponent to beat me evidently figured out a strategy.  At the end of the round, you get to pick the next category from four choices.  Though I listen to most genres of music, there are two that I am weak at, and my niece has figured it out.

It is an exciting game, and for as much as I love listening to music, and relaxing with it, I only get to hear one or two seconds of most of the songs as I compete.  Now to get back to my game.

Posted in Cancer, Family and Friends, Recreation | Leave a comment

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