Paul's Heart

Life As A Dad, And A Survivor

Well Read Or Do I Just Know Too Much?

You go to a doctor with a sore throat, a cut that needs more than a bandaid, or possibly recurring headaches.  When the office visit is over, hopefully you have gotten your diagnosis or treatment, and you are on your way to recovery.  But what happens when you are dealing with an issue that is not common enough or is something that your doctor or nurse practitioner has not seen since Med School?  Hopefully you are not brushed off with a “general” diagnosis and told to give it time.  If you are lucky, your doctor will refer you out to a specialist.  But even that is not a sure thing because your doctor does not know what is wrong with you, how will your doctor know what specialist to send you to?  And going to the wrong specialist will only continue the torment of “we really have no idea” and again, the cycle repeats.

The world of the long term cancer survivor turns just like that.  Looking at me, I appear like a typical 46 year old male.  Listening to my day’s activities, there is nothing that stands out to anyone.  But a couple of decades ago, I made a choice to undergo radiation and chemotherapy treatments so that I could survive cancer.  Normally, a side effect is something you experience while you are taking a treatment or remedy.  After all, when you look at the bottle of medicine, or watch the commercials, you get the information on “possible” side effects.  But there is a difference between short term and long term.  What you see on the bottle and hear on TV is short term.  These are the side effects that are known and must be revealed according to FDA regulations.  This way you know the risks involved with your treatment.

A little known fact?  Not all side effects are listed on the bottles or stated in the commercials.  This does not mean that they do not exist, but if the number of patients is so minimal, the side effects may not be required to be publicly stated when advertised.  But God help you if you develop one of those side effects.  Again, because it is not the obvious, a patient has the possibility of not being taken seriously.  And this is a mistake.  Sometimes, it can be a fatal mistake.

Then there are those side effects that do not happen for a long time.  Do you recall Three Mile Island or Chernobyl?  News programs raised the risks of lingering effects by simply saying, who knows?

With cancer, it used to be that patients were not expected to live too long after their remissions.  In fact, a mythical mark of five years to this day, is still a goal that survivors strive to achive because now, so many more people survive cancer longer than that.  And the longer you went past five years, the better your chances for survival.  With the good comes the bad.  Researchers never really researched the long term effects of radiation, chemotherapy drugs, and even surgeries (such as splenectomies).

When you go to the doctor for the flu, or a broken arm, you are followed up by your doctor until your deemed cured or healed.  After that, you are on your own.  Up until recent years, cancer patients were treated the same way, and it definitely seemed tied to the “5 year mark.”  Whether short term or long term, side effects need time to develop.  If you get nausea while taking an antibiotic, you complain about it, and perhaps something different is prescribed.  But this is only by diligence by you or observation of your doctor.

But what happens when you are exposed to all the toxicity, hazards, and challenges brought on by your cancer diagnosis and treatment, and you are not followed up on?  We all know, the sooner you catch something, the better, right?  That is the way it worked with my Hodgkin’s.  It was caught early.  But over the years, I had no idea that my body has been failing.  My cardiac system, respiratory system, muscular, spinal, and the list goes on, have all been affected.  Again, on the outside, I look like a normal 46 year old, and any doctor who were to look at me, or listen to a concern, would treat me that way.

But because of my ails over the years, I have learned so much about my health, my long term side effects.  My primary care physician relies on me to “teach” her this “new” medicine.  You cannot correct an irradiated heart like you would a normal abused-by-yummy-diet hearts.  A doctor who is not trained in these late effects (see other posts of mine under “Hodgkin’s Disease – Side Effects) who happens to stumble on my bodies ill effects, can find themselves in trouble, leading me to be at risk.  But these are things that I have learned over time.  I possess all records pertaining to my cancer past, and everything that has occurred to me since.

But the time does come, when I must deal with another ER doctor, express my latest concerns, trying to convince them that I am not a “typical” case, and again, when they cannot figure out what is causing the latest symptoms, in spite of my assertions, I hear “well, you are very well read”.  So on top of what is making me ill at the present time, the doctor-de-jur feels that I have planted the crisis in my head, “well read”.

Yes, I do know a lot about the human body, especially mine.  I know about everything that has been done to me.  I know of most of the risks to me from my past.  I question the risks that I am put in trying to correct new diagnosis as they come up.  But nothing is more frustrating, and perhaps risking mortality, than to just consider me “well read”.  Another term that gets tossed around like “well read”, hypochondriac.  Truth be told, I would rather be a hypochondriac.  And as each new issue is brought up, I breath a sigh of relief, that the right person listened to me, found my emergency alert bracelet, and my medical information cards in my wallet (what to do with me if I am unresponsive).

I will accept the term “well read” because that is a compliment to me that I know what I am talking about, I am knowledgable.  But I know what someone else might mean calling me “well read”.  I forgive you.

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