Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “October, 2015”

Being A Jerk, Or Being A Teacher


It happens approximately once a year, not on purpose, not budgeted, but an opportunity presents itself, and I seize that opportunity.  And when I do take that shot, I am going to make a shocking impact, a psychological punch in the stomach, and it is going to have an effect on the person I besiege.  The words that come out of my mouth will not cause physical discomfort, but it will still be my will to educate the lessons I have learned, the hard way, on someone else.  Some may call this arrogance, or the act of a jerk.  By the end of the conversation, the person I am talking to is going to have a much different emotion than prior to, but I am hoping that what they learn from the discussion, will be used to make things better.

I used to work in an environment that was not necessarily healthy to work in, even for a healthy individual.  But when you take someone like me, who has a severely impacted health history, courtesy of the extreme treatments used to cure me of my cancer, only to leave me dealing with late developing side effects, I can admit, a “jerk” inside me was making itself known.

During my treatment for Hodgkin’s Lymphoma, I was exposed to radiation levels that caused a life-threatening condition to my heart.  In fact, there are still additional issues with my cardiac system that I will have to deal with in the future.  Every year, my department would have to undergo “radiation training” to meet OSHA requirements.  This was to make sure that any time that we may be exposed to the various types of radiation, we would know which was more serious to deal with, exposure risks and limits, and other nerd-type information.  But having been involved in one radiation-related issue (no, I do not turn green and bulky when I get angry), I was already had some knowledge.  But there has always been one answer that I was always seeking.  And when I asked that question, the reaction by the leader doing the training, was shock.

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In the cancer community, many of us long-term survivors refer to radiation therapy as “the gift that keeps on giving” because of the cumulative damage that it does over time following the conclusion of treatments.  During the first training session I attended, the topic of “half life” of radiation was discussed.  “Half life” refers to the length of time that radiation exposure lasts, especially in someone’s body.

To give you an example, when you get a dental x-ray, the amount of time the radiation lasts is quite minimal.  But in an industrial environment, the levels of exposure are much higher, and “half life” becomes very important, especially if you are a pregnant woman or have other health issues.

So, we are muddling right along through a very boring radiation training, many of my co-workers had gone through the same training year after year.  This was my first training.  But when the topic of “half life” came up, and was explained, something curious happened with me.  After hearing the various examples of radiation I was exposed to at work, and learning how long the exposure could affect me, I decided to make the training personal.  You see, I know how much radiation I was exposed to during my treatments, and I had a question.

“What is the half life of 4000 grays of ionized radiation?”  It was a simple enough question.  All I wanted to know, or be able to figure out, was “is the radiation finally gone from my body?” or “how much longer will it take?”  The instructor’s answer?  “That’s impossible.”  I said, “I know” (and I did know this because they no longer expose people or patients to that level anymore – but the fact is, it did happen).  “But what if it really happened?”  Again he responded firmly, “that’s impossible – no one would ever be exposed to that.”

And then I introduced the trainer to someone who had been exposed to that level of radiation.  I also mentioned that I know another cancer survivor who was exposed to 8800 grays of radiation.  If my level was impossible, imagine more than double that.  It was clear by his reaction, and his lack of an answer, that would have to do as my answer.  I would be dealing with that exposure the rest of my life.

Years later, I would meet a friend who worked at a nuclear power plant.  Eventually the discussion went down the path where we were talking about exposure.  This was a friend that I was talking to, so my questioning was not as cynical.  This time it was more of a confirmation.  But that did not do anything to reduce the shock and obvious fear on his face.  He had explained that his daily exposure was limited to double digits, and once an employee hit triple digits, they would be restricted from anymore exposure.  For him to hear a friend had been exposed to the level I was, he began to tear up.  The reality of what I had been exposed to, the dangers, and the potential side effects, became clear.

Five years ago, to mark my 20th anniversary in remission, I located my radiation tech, who clearly played a role in saving my life.  Noreen was still there, but when I walked through the door, and she recognized me in spite of it being 20 years since we last saw each other.  She looked like she had seen a ghost.  After a giant hug, the very first words out of her were, “we had no idea”, making reference to what she was assuming my current health situation was probably like without me saying anything to her.  I know from looking at my original documents from back in 1988, the only late side effect that was noted as a concern, was pericarditis, a swelling of the heart.  By the time our reunion concluded, they missed those late side effects by a mile, because they did not know those risks back then.  They do now.

A recent visit to a cancer hospital though, was even more telling for us long term cancer survivors.  This was a major cancer network, main satellite location, whose staff was shocked to see, not just a long term cancer survivor of 25 years inside of their doors, but with the long list of health side effects that I have had to deal with, and clearly the amount of testing that would have be done on me.  Technicians actually had a sense of appreciation that they did not have to deal with fear or apprehension, and that I even asked questions during the testing.  One responded, “you really know you health and history quite well.”  I have to.  No one taught “Long Term Cancer Survival 101” in medical school.  Even now, it is not on the radar at the majority of hospitals.  There are some major cancer centers that now pay attention to us long termers, but when one of us walks through the door, to see the surprise in their eyes, still amazes me.  There are millions of us all over the world, and we have been forgotten.

Finally, I recently met a gentleman who explained to me that he was a radiation technologist.  I told him, I admired such an important job that he did.  And then… yep… I told him I was a 25 year survivor of Hodgkin’s Lymphoma, of which I was treated by radiation, so I had an appreciation for radiation techs.  You could see his response was satisfaction for his vocation.  And then I became a jerk.  I could not let him enjoy his moment.  I asked him his thoughts on a patient being exposed to 4000 grays of radiation.  He could not believe that he was standing in front of someone who had been exposed to that level.  I could not believe it.  How could they not be teaching the history of this medical treatment, and preparing those for the one day, they will finally run in to someone who was exposed to toxic levels of radiation (and/or chemotherapy)?

Clearly they do not use those levels of radiation anymore.  Nor do they use what is called “scattered field”, instead using a fine-tuned beam directed exactly to the cancer, reducing the exposure to other body organs.  And we chatted about that.  But while I feel like my intentions may be perceived as being mean, or a jerk, I recognize that I taught someone something quite valuable.  The odds are pretty good that he will someday have a patient who was exposed to the levels of radiation or worse than I had been exposed to.

Jerk or teacher, maybe both.

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A Different Kind Of Secret


Secret

I had never heard of the book “The Secret” before I moved to Florida a year ago.  And I will say, the book has nothing to do with just Florida, and as I have found out, the book’s popularity extends well beyond the panhandle state.  To summarize the book, and video (identical to the book), the belief is that the universe alone is responsible for everything that happens to us.  Good thoughts will reward us with good thoughts.  Bad thoughts will inflict negativity on our lives.  Whichever we send into the grand universe, positive thoughts or negative thoughts, the universe hears these thoughts, and comes back to your life in the positive or negative, depending what your thinking was.

“The Secret” to me is a nice concept really, but a bit more extreme, and sadly for me, since I cannot give it full confidence, I will fail the book’s message.  But my faith does not really provide me with wiggle room to believe that there are other’s responsible for my well-being, other than the Creator I choose to believe in.  But that does not mean that I do not believe in the intent of the book, to try to live your life in  as positive a direction as possible

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One of the first things I learned as a cancer counselor, was to be careful not to instill “false hope”, or as some would describe it, being too positive.  You do not want to give someone false hope by simply saying, “just be positive, all will work out.”  There will be no reason necessary, for when that concept fails, and it is completely unfair to tell someone, “well, you must have been thinking a negative thought.”  That kind of comment is even more cruel.

Secret2

From the very first true test of life versus death, my battle with Hodgkin’s Lymphoma, I defined how I was going to live my life.  Life for me as a child was not easy, but I was happy.  I would describe myself as a fairly positive minded child, whatever I set out to do, if I succeeded, great, and if not, I tried.  But I never went into anything thinking I was going to fail.

But being told you have cancer?  Well, that is a totally different situation.  And for anyone having battled cancer, I think we all will agree, the calendar cannot move quickly enough for us until the day we get to hear the words “remission.”  I was never known for quitting anything, whatever I took on, I finished to the end.  But faced with having to deal with cancer, for close to a year and a half, there had to be a way to make that time go faster.  There had to be a way that I would be able to maintain a positive outlook, while dealing with something so ugly, so lethal, and the treatments just as toxic.

I was told about the book “Positive Imaging” by Norman Vincent Peale.  The book is exactly what the title suggests, positive imaging.  From day one, in my mind, all I saw was what my life would be like, once I was done fighting the cancer.  As each day went by, I got another day closer to that goal.  And even after I concluded my treatments, I used the same strategy in my recovery from cancer.

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Did I struggle along the way?  Absolutely.  Side effects from the treatments were brutal both physically and emotionally.  Were there setbacks?  Sure, but that had nothing to do with having an occasional negative thought in my mind.

Over the years since my cancer battle, there are many in my life who have made the unfortunate comment that I am such a “negative” person, or that I “invite drama” into my life.  That is silly.  Really, who wants to deal with negative issues on a daily basis.  But then again, who better to deal with negative issues on a daily basis, and get through them, than someone who has a positive attitude.

I assure you, over the last 25 years, “I’ve had my share of sand kicked in my face.  But I’ve come through. And we mean to go on and on and on and on.”  Thank you to the late Freddie Mercury of Queen for these most inspirational words.  And each time, as I face yet another issue or crisis (I am really beginning to feel like a cat having “nine lives” with the severity of some of these events), I use the same strategy that got me through my battle with Hodgkin’s.

I imagine what life will be like, once the current situation gets resolved.  I accept that just like needing doctors to get me through my cancer, I need friends to get me through the non-medical issues I face.  And just like the horrible side effects from the treatments, you face them, and deal with them, just like the things that occur in real life with other non-medical issues.  And in the end, just as sweet as hearing the words “remission,” the trials I face will also reach their conclusion, and it will be yet another day of celebration for me.

But the bottom line for me, has been my secret, I know I will get through.  But instead of relying on the universe, I rely on myself.  I have lived through enough practice, and just because I accept that there may be another trial in my life, whether medical or not, does not mean that I am a negative person.  It means that I am strong enough to take whatever the situation, and give it all I have to get through it.

Secret4

 

Upcoming Projects


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I know my posts have been few lately.  It is not that I am short of stories, I have close to 300 in my cue that I have started.  But I am working on a few projects that I hope will take “Paul’s Heart” to the next level.

Yes, I am hoping to hit the social media with a video version of “Paul’s Heart”.  I am also working on my next chapter to be submitted to the annual Visible Ink book published via Memorial Sloan Kettering Cancer Center.  Earlier this year, the chapter that I submitted and was published last year, was performed live in Manhattan.  So, I really want to concentrate to try and continue the quality submissions, which get shared here, once the book is published.

Finally, I have completed an interview with a researcher who is using a technology now available in the care of following up patients with cardiac issues.  This is especially important to patients who are being given chemotherapy that has history of affecting the heart.  Because this is such an important piece, I am taking my time putting everything together, because with “Paul’s Heart”, I want that story to go viral.  As a patient, in today’s medical world, we have to be our best advocate, because we have no choice.  This knowledge that I will be sharing with everyone is huge.  And there will be video footage of the interview as well.

So sit back, look back through some of the past posts and pages.  The big story is coming real soon.

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