Paul's Heart

Life As A Dad, And A Survivor

Archive for the tag “side effects”

Can Being Bullied Be A Good Thing?

Over the last few years, especially with my 2011 school board campaign, I had many conversations about bullying in schools.  I have been an advocate for bully prevention forever.  In today’s schools and neighborhoods, I do not believe any level of bullying can be tolerated or treated as a “phase all kids go through.”

Bullying in school is frequently referred to in my daughters’ karate class by their instructor.  He does not teach them to attack bullies, but rather get help or defend.  But if a child must defend themselves, then by all means the child will.  But it was a conversation with a couple of parents that spurred this post.  I was talking to one parent about her son being bullied and how the school district is doing nothing to prevent it.  According to the parent, the child is in an alternative placement along with another student who is frequently physically assaulting her child.  I will not get into specifics of the case because I have only been told one side.  But I will say this.  No child should have their civil rights violated by being physically abused by another student.  If what the parent says is true, that this behavior is repeated, and the school has been notified, and so has the school district that placed both students, then the school is condoning the acts and the district is ignoring the acts, both by simply ignoring the complaints.  This is going to sound harsh, but if no one from the school or the district will control this situation, then the parent should involve the local authorities with formal charges against the bully for assault.

Just then, another parent joins in the conversation and begins to discuss bullying issues that his children have had.  But the father went further by explaining why he would not tolerate behavior like that at all against his children.  He revealed at that moment that he had been frequently abused in school by bullies.  He did not goin into reasons, but the point that he stressed, was the impact that it has had on him as an adult.  Honestly, I have never seen him bust a gut with a laughing fit,  but he has expressed a sense of humor, albeit a dry one.  But he got my attention with what he told me that he did not consider funny.  I will not go into those boundaries, because the point I want to make is how his being bullied as a child has made him the way he is today.

And that got me to thinking.  How did my being bullied in school affect me as an adult?  Quite simply, I do not choose my battles.  I will not back down from anyone for anything.  If I really do not believe in something,  that I am being urged to do or support, I will not, no matter the cost.  It is almost as if, all the crap I took from everyone back in school, I would never put up with any in my adult life, ever.   Having no one stand up for me, I will fight for everyone and everything.  This kind of thinking has not been good for me.  I have lost friends.  Family alienates me.  And there are frequent quarrels with Wendy. 

The majority of my co-workers despise me because I choose to do my job ethically, while they would rather cut corners, work unsafely, just to have hang-around time and socialize or surf the net.  But they are also good at slandering me and making false claims against me.  I do not let them get the upper hand, even if I happen to get in trouble.  I rely on my reputation for my work to speak for me.

Salesman have no chance against me.  Insurance reps, do not even think about ringing my door bell.  You might get away with mixing up my food order.

But my toughness from being bullied I thnk conributed to how I deal with my health.  For starters, I took on my battle with Hodgkin’s Disease never thinking the possibility it would take me.  Recovery from all the side effects was taken on the same way.  I would over come.  My heart surgery, bouts with pneumonia, all recovered under my direction, my determination.  But I get through them because I am so physically tough, a high tolerance for pain.  But that is what is keeping me alive.

Why Me?

(Thank you for another good topic sent to me to write about.)

Why me?  Maybe the question should be why not me?

I spent only one evening on the first question when I found out that I had cancer.  It is like spilling grape juice on a white carpet.  You can either stand there and stare at the deepening stain or you can get right to work cleaning it up.  I worked very hard to rid that cancer from my body.  I had no choice.  A stain in the carpet, you can at least replace the carpet when it did not come clean.  My life would not have that opportunity.  I could not worry about how or why the juice was spilled, I had to clean it up, now.  There was no length of time to ask “why”, I had to start treatments, now.

That is not to say that I left myself off the hook.  It just took me a lot longer to get there.  In a short number of years following the end of my treatments, the question that would haunt me, and do so repeatedly, was why not me?  I had gotten through my treatments of course with the short term side effects, but only one would show any kind of permanence to it, the hair loss from the radiated area.  Within a couple years of treatments, I would find out that also my thyroid had been compromised from the radiation, and chemotherapy left me infertile.

But in 1997, I met a group called the American Cancer On-line Resources web site, .  I went on to the link for long term survivors because that is what I wanted to be, a long term survivor.  I was around seven years out, so hopefully that qualified me.  It did not take long for me to realize the web site was not what I thought it was going to be.  Yes, the people here were long term survivors, but they were dealing with so many horrible and severe issues that they were blaming their cancer treatments.  I did not stay long on the site because I did not feel that I belonged in that arena.  But something made me sign back on again.

I began to meet people at least over the internet who had gone through similar experiences with even the same diagnosis and staging as me.   But they were at a stage now, where they were either dealing with another cancer, heart issues, muscular issues, bone related concerns, and so on.  It was hard for me to relate because I was not experiencing those issues.

Then I met one particular list member who to this day, is one of the most important survivor that I have ever met.  For privacy reasons, I will call her Tina, and if she reads this, she knows I will talking about her.  It was over fifteen years ago when I first heard her struggles.  Tina had gone through treatment for Hodgkin’s Disease, just as I had.  But her treatment was done in a hospital network up in New York.  My treatments were done in Allentown.  She had been treated the year before me.  But there was a huge difference between one year, and several hundred miles.  The amount of radiation that she was exposed to was double what I had been, which was 4 times the lifetime limit.  Our chemos were similar.  By the time I had met her, she had already had another cancer (thyroid) and over two dozen surgeries.

Why did she have to go through so much?  Why not me?  Tina was not the only one.  I personally met dozens more long term survivors, some had the same staging, same treatment, different treatment, and most all had different issues they were dealing with.  But why them and not me?

I have often wondered about the three other patients who were treated with me in the oncology suite.  I never met them or even knew their names.  I only know that I opted for additional preventive chemo, and they obviously had not, evidenced by their absence.  I did find out at the time that two of them did have to have their chemo adjusted for their low blood count levels.  Some how, I took 8 full dose complete cycles.

But along with the people going through Hodgkin’s, or other cancers, patients who relapsed, patients who lossed their battle, or other long term survivors, I forever asked, “why them?  Why not me?  The relapse patients and my friends who passed away either from their cancer or secondary issues often left me with empty and hurting feelings.  I relied on them for hope and inspiration.  In spite of what they were going through, they were still living a long time, much longer than cancer patients were supposed to.  And since I had no serious issues at the time, I counted on that.  Why them?  Why not me?

Before I go any further, I must state, as I always do, times change.  Everyone’s bodies are different not only in physical being, but how they react.  Geography, schooling of the doctor, attitiude, diet, sleep, and many more factors all play into how well you do with treatments.  Then of course, there is progress.  That is something we often take for granted.  We think that it takes forever for new things to be discovered, when in reality, new treatments are discovered nearly every day.  If the treatments work better, and are less toxic, and produce less side effects, the patient will get those treatments, and the former treatments will become obsolete or at least last resort like those that were used on me.  The same was said to me decades ago, by other survivors who came before me.

Like I said earlier, I do not spend a lot of time asking “why me?”  But around the time that I met the survivors I now know today, I did begin to ask, “why not me?”  Why were others who were treated around the time I was treated developing such side severe side effects and I am not?  Why are people who were treated with the same modes of radiation and chemo in bad physical condition and I am not?  Why does Tina have to repeatedly go through life arrest and I do not?  Why them and not me?

Here comes another one of those “yeah, but…” disclaimers.  Back as late as the mid 90’s, cancer survivors still were not expected to surpass five years statistically, in spite of the fact that millions of cancer patients were doing just that.  But once it was realized, protocol was developed and the need was understood, to follow up cancer patients, even if completed with treatments.  There is still some discussion as to which doctor should be doing this, your primary care doctor or your oncologist, but now a cancer patient is followed up, forever.  And as cancer patients we know, the earlier something is caught, the better the chance of survival.  And by the continued follow-up care, any secondary cancers or issues that develop will be caught earlier than the critical care that was needed to prevent what would have been my fatal heart attack.

There is a lot to miss, if you spend too much time asking “why me?” or even “why not me?”  Just like the time passes if you stared at the expanding, wet, purple spot of grape juice still sitting on your white carpet.

Why I Changed Oncologists (Twice)

There are many factors that went into choosing my oncologist.  But no factor to me as important as trust.  I selected the oncologist that treated my grandmother for her breast cancer a few years earlier.  She had tolerated everything so well, had great spirit, as odd as it is to describe a cancer journey as a “positive experience,” my grandmother presented her case in that manner.  But I had a confidence in Dr. M before I had even met him, because here I was, in the same office that my grandmother was in, several years before, and was still alive at the time I was there.

And during the beginning of the original process, everything worked like it was supposed to.  Dr. M listened to me, assured me everything was going to be alright, and explained everything that was being done and why.  He even visited me in the hospital following one of the testing procedures I had done.  But when it was time to make the decision on the course of treatment, radiation or chemotherapy, he gave his recommendation, which I had other ideas.  I had turned away from chemotherapy followed by radiation.  Instead, I would just undergo radiation therapy.  It would allow me the quickest opportunity for me to recover and subject me to fewer visible side effects.

Unfortunately, as Dr. M had feared, radiation alone had not done the job completely as I had hoped.  Instead, new disease had appeared.  This time, Dr. M was not giving me any option.  I was told chemotherapy was coming, possibly more radiation, but definitely chemo, and starting within a couple of weeks.

My personality dictates that if I have a question, I want an answer to it.  I am willing to walk away from whatever the circumstances or become quite combative if I require answers that strongly.  I had my consult to start chemotherapy with Dr. M.  As I am known to do, even twenty years ago, I use notes to remember details of comments or questions.  Given how intense the chemotherapy cocktail was going to be, I had a lot of questions, about a page and a half of legal paper.  Dr. M walked in and asked what I was holding.  I showed him and he dropped the papers on the exam table, “I don’t have time to answer all of these questions.  This is ridiculous.  What do you think this is?  You either want to get better or you don’t?”  With that, I walked right out.

The thing about serious illnesses, is that most of us do not realize that we do not have to take these monumental efforts on our own.  There are people out in the world to act as an advocate for you, if you cannot voice your opininions and questions.  I had already been seeing a therapist to deal with my cancer horror when I went straight to her office from Dr. M.  Ilona asked me what I wanted to do and I told her, “I want to live.”  But I had questions and Dr. M. refused to answer them.  My confidence percentage level in him dropped to single digits.  I wanted a new doctor but did not want to start all over with new testing in the event another doctor would want his own results.

Ilona made the suggestion that perhaps I switch to Dr. V or Dr. P who were in the same practice, but perhaps had the more interactive personality that I needed.  I would stay in the same practice, meaning I most likely would not have to undergo new tests.  I liked the idea but was uncomfortable with implementing this change.  Which Ilona offered to do on my behalf.  Also, Ilona offered to speak to my oncology nurse to see if she would be able to answer all of the questions that I had.  After all, Brenda would be the one adminstering the chemo.  And Brenda’s motherly care was already engrained in me.  She took care of me like I was her son.  And I trusted her.  So, I spoke with Brenda about my questions, and the following week I began chemo with Dr. V.

About a year after my treatments had ended though, another issue had come up, one that I had discovered by mistake, and one that I was never intended to find out.  With no real purpose other than follow-up exams, the only real money with me, was by doing bloodwork.  I know this sounds like a very ungrateful statement.  But I will justify that.  By my third follow-up exam, a wierd process was happening.  I was having to go back into the doctor’s office to have my blood re-drawn for testing.  Okay, so I do not like needles, and was not crazy about having to take off from work again, but hey, the tests were important.

But then I began to get rejection notices in the mail from my insurance company.  This was odd, because my coverage literally covered me for everything.  Further review of the statement showed “duplicate billing”.  It was obviously some clerical issue so I was not worried about anything.  But then I got an actual bill from the doctor’s office.  My benefit plan took care of all expenses other than copays.  So I called the office to find out why I had gotten a bill, and I was told “because you had blood drawn.”  I said, “I know, but they couldn’t run the tests on the blood because it hemalized.”  The clerk, who also happened to be the doctor’s wife said, “you have to pay.  You had the blood drawn.  The insurance company isn’t paying for it, so you have to.”  The key was finding out that blood usually hemalizes when it is drawn, by the tech.  Simply, the red blood cells are outer walls are ruined.  So they knew the tests could not be run, yet submitted a bill to my insurance company anyway.

That is when I did a little homework, and discovered that blood hemalizes when it is drawn, not during the testing.  So, the blood never made it to the lab.  Why the hell are tests being billed that were never done?  This was the third time that this has happened to me.  I called a family relative who was a nurse at the time, and confirmed everything with her.  Then I called the doctor’s office back.  I told them, “I want all of my records transferred to…” and then gave them the name and address of the new oncologist I would follow up with from then on, and then told the clerk “why”.  Before I could go any further, the clerk then said to me, “I will personally take care of that, and you can consider your balance paid in full.”

A dishonest business practice left me with a pit in my stomach.  I was supposed to be grateful to this practice for saving my life.  I did not pursue any legal action toward them as Ihoped that the fact that would worry if I would go public would scare them into straightening out.  I have never been in contact with them since, but I do still think about the situation, and how many other patients might they have done this to.

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