Paul's Heart

Why The Delay? Did I Miss Something?

All through my life, I have never been known as a complainer when it comes to my health.  The inside joke with my doctor and staff, is that if I am spotted in their office, there clearly has to be something wrong.  I do not ask for an office visit unless I can no longer tolerate what is ailing me, or it has gotten so bad, that over the counter methods no longer have any effect.

Even during my days undergoing cancer treatment, between February 1989 and March of 1990, I made no phone calls to my oncologist about any side effects that I did not feel I could not tolerate or deal with.  My goal following my treatments was to be free once again, to be in control of my health.  I wanted to return to the days when my doctor only saw me in times beyond my ability to care for myself.  Perhaps that thinking might have had the opportunity to cost me my life as I endured four months of chest pain before finding out I could die any moment.  If ever there was any example of needing to be prudent in my care, this should have been my light bulb moment.

So what takes me so long to respond yet today?  Why do I allow my tolerance to pain and discomfort to dictate my judgement?  As I sit in front of one of the doctors who specialize in the care of long term cancer survivors at one of the top cancer hospitals in the country, I confound him as he struggles to understand, why I tolerate levels of pain and discomfort.  Late side effects from my treatments cannot be reversed, but they can be slowed down, managed.  But in order for that to happen, I have to let all of my doctors know the simplest of concepts, when I do not feel well.  It should be that easy.

In the last year and a half, I have had to deal with three major issues related to my cancer history.  I had developed a swallowing issue that prevented me initially from swallowing foods occasionally, toward the end, not even able to swallow water before reaching out to my doctors.  Twice within the last nine months, I have ended up in the emergency room, once by ambulance, with fevers over 103.5.  In March, the diagnosis was sepsis and pneumonia, and this month, it was a case of bilateral pneumonia, formerly called “double pneumonia” or “walking pneumonia”.  To get to this point, my body had to have given some sort of warning signs which I either ignored or never recognized.

It was a nurse during my recent hospital stay who helped me to recognize what I cannot see or sense.  At one point in my life, I had been heard saying that I deserved everything that has happened to me since I made the decision to save my life from cancer.  It was a choice that I made, to either let the cancer take me, or put up with the costs of the treatments and surgeries that saved my life.  No one else made that decision, except for me.  But it was not so much a price that I paid every day for my cure, but it was a tolerance that I was unknowingly building.

I have had over two weeks to try and figure outwhat could have possible led to my latest medical crisis.  There had to be some sort of warning that I failed to recognize.  There were actual spots on both of my lungs.  I deal with chronic pain every day.  How do I differentiate what is old and which is new pain?

Someone who constantly calls their doctor about every little pain, sniffle, cough, or ache, is referred to as a hypochondriac.  And this is one of the main reasons that I speak for only myself, and perhaps other cancer survivors, why we do not react sooner.  So that we are taken seriously because quite clearly, when it gets to the point of sepsis or double pneumonia, there will be no mistaking it.  There will be no accusation of hypochondria and the resulting dismissal.  And because of this, we become tolerant.

Though there are currently studies on late effects on cancer survivors, there is still so much more to be learned.  but for those of us who know what we have been through, we owe it to ourselves and our families to not underestimate anything that does not feel right with our body.  Of course, it is one thing to talk the talk, another thing to walk…