Paul's Heart

Life As A Dad, And A Survivor

Archive for the tag “Hodgkin’s Disease”

Stay Home If You Are Sick? What If You Cannot?


Your child has a fever or vomits in school, you get the phone call to come and pick the child up.  Even when there is only ten minutes left to go in the day.  Last year our school district came up with some goofy policy in dealing with lice.  To be honest, I am not sure who does the actual determination as far as contamination when it comes to eggs and nits, but once again, the kids get sent home.  For the child, it is no big deal.  If there is homework missed, it would probably go home with a classmate if it was important, or a test would just be made up when the child returned to school.

But as adults we are expected to endure much more.  Not only are we expected to get to work, crawl into work, or be rolled on a stretcher into work, but we are expected to be exposed to all kinds of germs, bacteria, and viruses.  Currently, we are in the midst of a major flu outbreak.  It all depends on which media source you want to listen to, to determine just how bad the outbreak is every year.  A few years ago, it was the bird flu that was concerning everyone.  Last year swine flu acually led to my company having an attendance policy just for that outbreak.

If an employee had any sniffle, the company wanted you to make the decision to stay home.  Of course, we had a strict attendance policy that did not pay the employee for the first three days out sick.  But if you were sent home from work by health services suspected of swine flu, you were not allowed to return to work for seven days.  So the employer sends you home at your expense for three days and then you get paid for the remaining four.  The kicker is that the reprimand system kicks in at five days.  Nine days out you are suspended for five days (that is right, you are suspended five days for inconveniencing your employer if you are sick nine days in a year).  But at day twelve, potentially you will be fired, for being sick.

Consider this, whether paid sick time or unpaid, absenteeism is a huge expense for a company to absorb.  It is definitely worse if the employer has to pay the absent empoyee to do nothing at home, while expecting those who have come into work to make up the lost time, often without any extra pay.  So it becomes an accepted and tolerated procedure, reprimand the employee for not coming in to work, whether withholding pay, or by punitive actions such as suspensions and terminations.  The ironic thing is that this usually has no impact on the person who abuses any attendance system but has exactly the opposite effect on the employee with the legitimate illness.

It is normally the employee with the legitimate illness who is not used to getting a paycheck deducted with sick time.  Often times those employees live on budgets, so the stress of not missing pay from the check has the potential to make things worse.  So the reaction is for the employee with the legitimate illness to force themselves to work.  The employee is already at risk because of the depeleted immune system, but with physical exertion and exhaustion, the chances of recovery or worse, the illness becoming more dangerous,  has to be recognized at least as unfair. 

And if there is no concern for the legitimately ill employee, there should be even more disappointment in the concern for the other workers who are not contaminated with whatever bug the sick employee is dealing with.  So while the media spreads global fear of an Armageddon-like epidimic of flu, employers with their absentee policies actually contribute to the spreading of illnesses like the flu, strep throat, and other contagious diseases. 

If you are watching the bouncing ball, one sick person is bad, but risking several sick people is okay.  The cost of lost labor for one employee is bad, several employees out is very bad from a lost productivity point of view.  But that is exactly what employers create.

There is one final critical thing to be considered.  And it something no one, sick employee or greedy employer does not even consider, because it is something that neither can see.  There are people in the world, and especially in the work force who have what is called a compromised immune system.  A compromised immune system can be depressed supressed, compromised, and a few other descript conditions.  And unless one of those less unfortunate patients speak up, there is no way to know.

I am one of those who have a compromised immune systems.  I was not born this way, I was made that way.As part of the staging process of my Hodgkin’s Disease and determining the need for chemotherapy or radiation or both, a procedure called a laparotomy was performed.  One of the things done during this surgery was removal of the spleen to see if the organ is riddled with Hodgkin’s.  It was considered “no big deal” as I “didn’t really need a spleen” as others do without.  It was actually quite commone, not just for staging cancer, but in many forms of trauma, the spleen was removed.  This creates a condition for a patient being declared “asplenic”.

In recent times, it has been realized just how important the spleen is to the human being.  The spleen kickstarts your immune system and keeps it fighting whatever is fighting against your body.  For example, have a cold?  Your spleen helps to fight it.  Scrape and cut your knee?  The spleen helps to fight infection.  Having a heart attack?  The spleen helps to recover.  Simply put, no spleen, the chances of your fighting an infection or surviving are made that more difficult.  To help give me a chance, over the last several years, I had been given multiple pneumovax and menningicoccal vaccines.  My body does not respond in antibody production like it needs to which means that if you have a cold, I have an even bigger chance of coming down with it.  In spite of my children being innoculated for chicken pox, if there is a child at school who was not vaccinated, comes down with chicken pox, my daughters could carry it home.  Strep?  Increased chance.  Twice last year (within nine months to be exact), I was taken to the emergency room to be diagnosed with two different pneumonias, one case being septic, the other double.  But both types were determined to be “Community Acquired” which means I got it from someone else.  Someone else who was sick and either came to work, came to church, or some other public passing, created a near-fatal situation for me.  No, I know it was not on purpose, because they did not know I was at an increased risk or surely they would have avoided me.

My comments are more than just pushing for hand sanitizer every two feet or training everyone to cough into their elbows.  It is about awareness and consideration.  The flu might not be fatal for the majority of people, but for some, there is an increased risk.  Unlike last year when my employer forced a swine flu absence policy, it does not show any signs of improving preventive care today.

Remember Jim Henson, creator of the muppets?  Died of complications of strep, originally thought t o be pneumonia.  He was also asplenic.  In spite of agressive treatments used on asplenic patients, the creator of Kermit the Frog passed away at the age of 53 after two cardiac arrests.

I should not have to state publicly that I do not want to die, and that I do not want to catch what someone has.  It is common sense how to prevent the spread of things like colds and flu, clean hands, and staying home when you are sick.  I only wish employers realized that people do get legitimately sick and while there are those who play the system, those who do not, should not have to pay with their lives.

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 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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