Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “May, 2013”

I Know You Didn’t Just Say That To Me

So one of my supervisors decides to say to me, “you’re such a negative person.”  Now I consider myself a very positive person, in spite of the things that I have dealt with in my life, and continue to deal with, and will deal with.  But if my reaction to him was to just want to give him a “backhand”, must I forfeit my positive attitude claim?

There are certain roles that I have taken on in my life, some of the leadership, some of them role models.  It is my positive attitude that allowed me to choose to take on these things, as well as have the support from my peers to be selected for those roles.  As a cancer survivor, my role is simply to encourage and inspire.  In spite of everything I have gone through over the last five years, that is truly what I want to do.

As a political candidate, that too can be inspirational as to the reason why I would run for what many say is a thankless job, school board.  But given that I balance a full time job, medical appointments for myself, attend school district meetings, and still have time to campaign, I guess for the most part, it has been a positive thing in my life.

But as for work, after more than thirteen years of the department I am currently in, this past Winter I was elected one of four shop stewards.  I belong to a union.  There is very little positive to be thought about the shop steward position, again it is thankless, and unfortunately it is a lot of mediation and awareness.  So it is very rare to have the opportunity to be positive.  Any my record over these last thirteen years do speak for themselves as far as me being a “positive” employee.

I miss the old days of working for a “mom and pop” company.  Where numbers of employees were small enough that it was like a second family away from home.  You give that up when you work for a big company in corporate America.  Quantity becomes the priority over quality.  Greed replaces reputation.  Success blurred from pride.

In most of my working life, up until I came to this company and into this department, my work reputation had been spotless.  I had never been terminated, never even reprimanded.  My attendance record was near spotless, including during my treatment days.  Unfortunately, the downside of working for such a small company, lack of advancement opportunities and benefits.  Being a cancer survivor, benefits often outweigh value even over salary.  And given my health status today, I am very thankful that as a union member, I have group health insurance.

But it did not take long before I got a taste of what it was like to work for a major corporation.  Within the first couple of weeks, I had received a reprimand.  And in spite of my protest and objection, and ability to prove myself innocent, instead I faced a blackmail-like behavior by not only management, but by my union representation.  Eventually, it got to the point, where I was so stubborn with my work ethic, unable to get me to crumble, management made it personal.

Every year, I would struggle with not being able to get management to back off.  And it seemed every year, it would escalate.  I ended up isolated from my co-workers, some who had been more than just co-workers.  Given the union representation that I had, I was hoping to be elected to the shop steward position.  Over the years, I have seen so much quality go down, more bullying from management, so now that I am finally in the position of shop steward, I can now deal with much of these problems, or at least be aware of more of them.  At least by them not being sprung on me, that can help prevent me from erupting with stress.

But that is just it, with my hermit-like reputation at work, now I will be a lot more visible.  But I will be seen coming to the defense of people, in other words, for negative things.  It is kind of hard trying to put a positive spin on something such as an employee being served a termination notice while recovering from open heart surgery, or while laying in a hospital bed in a coma from a car accident (yes, both are real events).

Unfortunately, I have to leave work to get back to that positive outlook.  Unfortunately I have to repeat that whole behavior the next day.  And that is hard to put a positive spin on.

Sleep Deprivation

Sleep is overrated.

As far as I can remember, I have always been always been a light sleeper, but never suffered from an inability to sleep.  That is until my heart surgery.  I always sleep on my sides, however, when I had the surgery, because my breast bone had been cut open, I was forced to lay on my back, which was a struggle enough to get into bed.  I could never have been more uncomfortable, and with Wendy’s help, and several pillows and positions, I finally found comfort.

But the day came that I was able to roll over onto my side.  Unsure and nervous how my rib cage would take this effort, I rolled over onto my right side first.  It went without incident.  But when I rolled over onto my left side, my heart nearly jumped out of my chest, or at least that was what it felt like.  Even though prior to checking out of the hospital, I was told that I was so much better cardiac-wise than before, I would have sworn I was having a heart attack anytime that I rolled onto my left side.  Thus I went from being a light sleeper, to a no-sleeper.  I would never get into a deep enough sleep, called REM sleep I believe.

Until recently.  Several things in my life have been occurring, simultaneously or pyramiding, but it is alot.  The strange thing is that I do not really acknowledge them necessarily as stressful.  At least not consciously.  But I do know that my sleeping has been dramatically effected to the point where I average two to three hours a night, and on at least three occasions in the last month, including this past weekend, I had zero sleep.

Here is what a normal and healthy person can expect without a decent amount of sleep.  Memory and cognitive functioning can be affected.  Logic can be thrown out the window.  Stress and irritability increase.  Lack of sleep can affect our job performance as well as safety.  One other activity that comes to mind when the mind is abused like this, consuming alchohol.  Do not even get me started on fatigue.  The body needs rest to recover from the day’s activities.

And what do you suppose will happen to a body that has been extremely compromised from cancer treatments and surgeries that have changed the physiology of the body?  But before I get to that point, I need to find out what happens when the brain just will not shut down?

It is pure coincidence I am certain, that the escalated insomnia occurred when I stopped drinking the large amount of Coca-Cola (up to three liters a day).  I keep a very busy and tight schedule, often missing meals.  I had no issue with this because I traded calories for soda.  I want to believe that perhaps my body reacted to the lack of sugar and caffeine by shifting into its own natural adrenaline gear.  The only problem with it, unlike the “down” that goes with the “up” of soda, I do not seem to have a “down” for this.

To complicate this matter even further, one of my late effect issues, which I believe has still not been narrowed down exactly, though procedures have definitely defined symptoms, involves a nightly battle with reflux.  It is frustrating to me, because I have made all of the changes that the doctors thought would resolve this issue (which is actually complicated with a difficulty of swallowing issue).  The head of my bed has been raised.  I have doubled the amount of PPI (a prescription to reduce acid production).  I have eliminated most foods that contain or produce acid, especially carbonated beverages.  And I certainly do not eat anything after seven o’clock in general (unless I have gotten home late from some event).

One thing that I have learned I can count on, it is in the early morning hours, I will begin to cough.  And that coughing will result in some production of reflux.  If I am lucky, I can go back to sleep.  If I am not, on at least two out of three occasions, I have landed in the emergency room diagnosed with pneumonia (one accompanied with sepsis, the other double pneumonia).  The causes of the pneumonias went undiagnosed, but one test that had been done on me, found an issue in my esophagus, called a diverticulum.  It was explained to me, that this fault had the potential to trap bacteria in my esophagus, which could then lead to what is called aspiration pneumonia.

Of course, I understand without looking in a dictionary, the word aspiration to be related to choking or loss of air, unable to breathe.  And that is what the two ER visits began with.  So, nearly every night, I wonder, is this going to be the night that finally gets me.  Am I paranoid or afraid to go to sleep?  Am I just too keyed up to turn my mind off?  With everything on my plate, whether willing to admit it or not, is my body under too much stress.

One thing I do know, I need to get a grip on this.  The most notable victim/patient of insomnia was Michael Jackson.

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.

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