Paul's Heart

Make Your Inner Voice Your Outer Voice

One thing that I know I definitely got from my mother was my ability to speak out.  Mix in the experience of being bullied the majority of my scholastic years.  Then factor in the years of experience and exposure in the second half of my life in the medical world.

I will not deny that I am more outspoken than most people I know.  That can be a good trait or a bad one.  It can rally people together around me or those that need it, or it can isolate me and cause abandonment issues, actual ends of friendships.  While I am often congratulated for the stances that I make, when all is said and done, when the dust is settled, I often find myself standing alone.  I may not win every challenge I take on, but I actually do hope that it will make things easier for the next person who unfortunately may have to go through a similar situation, especially those who feel they have no voice or cannot express their voice.

There are many complaints about the cost of health care in the United States.   Causes are blamed by many, from lack of insurance, prevention, and lack of quality health care.

I have a very high tolerance for pain and illness that allow me to give off the presentation, that upon sight, I look like an average middle aged man, healthy, no concerns.  Because of this, I often hear and sometimes participate in uncensored conversations that include how much should be spent on a particular patient battling a certain malady.  It is inconceivable to me, that a country as great as ours, as proud as ours, as technologically advanced as ours, and as morally righteous as ours, that some people feel how much, if any care a person should receive or be denied.

One of my biggest issues since battling cancer more than two decades ago, is the fact that I survived and so many have not, do not, and will not.  This is no different of a situation than survivors of natural disasters, accidents, or violent events.  Why me?  Why did I get another chance at life while a child battling the same cancer as me did not?  Some would argue that I should just shut up and be grateful for my second chance at life, especially since some do not get that chance.

In the case of someone who is sick, judgement comes swiftly as conversations about the ill turn to how the person came to be sick.  After all, it is crucial to the spectator to know if patient is just a victim of circumstance or brought the illness on by their own decisions or poor habits.  So some have no problem having zero empathy for an alcoholic needing a liver transplant, a cigarette smoker needing respiratory treatments, or worse.

There are literally millions, well over twelve million in fact, survivors of cancer.  And of those millions, a majority of us, myself included, now face ramifications (doctors call them side effects) for the decision we made, to save our lives.  These side effects range from minor to major, but from a financial standpoint, add up sometimes to quadruple what it originally cost to cure us.

As I mentioned, because I look healthy, people are comfortable with complaining about people receiving exceptional testing and treatments, calling them wasteful spending.  While I would agree about the costs being extreme, there was no way that I knew 24 years ago, what I would be dealing with today, the fears I would face, the uncertainties I would be dealt with.  Again, as a 46 year-old male, I should expect to be turned down by the insurance company  for repeated stress tests for my heart in spite of my having had open heart surgery.  Forget what doctors know, the insurance companies do not want to keep paying for it.  So as I appeal my case, my symptoms get worse, leading to more extreme testing and treatments.  And with the objections of those ignorant around me I hear, “how much will more should be spent?  when is enough enough?”

I do not know what my decision would have been in 1988 had I known that so many things would happen with me in 2008, 2009, 2010, 2011, and 2012.  And there will undoubtedly be more in years to come.  But I can prove that I had no idea, nor did my treatment team, know what would be in store for me in my future.  But as they now learn about cancer survivors, my fellow cancer survivors such as myself, also learn.  We do our best to inform ourselves and educate ourselves.  It is not my wish to end up back in the hospital a week after I have been released, especially for the same thing I was admitted for in the first place.  You tell me which is more expensive, treat me right the first time or have me come back and treat me some more?

So when the doctor comes into your room, and tells you that your condition has not changed in the three days since you first arrived in the hospital ER, you must speak up for yourself.  No one around me was going to do it for me in spite of the fact of what I came in for, and was no better than when I came in.  And so I challenged the doctor, with the ability that I developed over the years to learn about my care, my body.  I came in with the same issue nine months earlier.  Why were not the same tests done as before?  Why were the same medications that cured me before used this time instead of the cheaper alternative?  Why was the cause not deterimined so that it could be prevented from reoccuring?  And there were plenty more questions that followed.

When all was said and done, nurses and other support staff congratulated me on the way I stood up for myself and for my well-being, whether they were in my room with me or simply heard about my experience.  Friends, relatives, and all the medical professionals involved in taking care of me all realized what could have happened had I been sent home prematurely.

But not everyone has that ability, that voice.  It is my hope that if you are one of those, that you have someone willing to speak up for you.  If you are one of the unfortunate thinkers who believe that too much money is spent on individuals, that is a shame as there is no way that you can possibly know all of the details involved in a particular case to make your decision or opinion.  Wait, you do not have that right to make that decision for me, even if you knew everything about my case.

Today, I am sitting at home recovering.  Unfortunately, I do believe another event will occur.  And hopefully my loved ones have learned invaluable lessons in how to speak up for my care.  My life, and the fatherhood of my daughters depend on it.  And it does not have to be a health issue that will be my next battle.  And those that know me, know that is true.  And they are still here by my side because they know that I would stand by them the same way if needed.