Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “May, 2018”

Still Miss My Dad

Today marks 4 years ago, my Dad lost his fight with lung cancer.  The loss of my father is no easier today than it was then.  I can make a lot of sense why things occurred the way that they did from a medical standpoint.  But like many others who have been or are in this situation, the struggle is with the fairness.

There are not many photos of me in my childhood with my dad.  Unlike today where everyone is obsessed with photos to post on social media, everyone wanting to share their life stories, pictures just were not that big of a deal back in the 1960’s.  And then came the divorce.

I no longer really talk about the divorce, because of how it affected the first half of my life, what it took away from me, away from us.  It was always something that he regretted.  Instead, when it comes to remembering my father, it will always be the second half of our relationship, that I would truly learn about my Dad.  I would finally have that relationship that I was prevented from having as a child, albeit in a wonderful way of my own.

My dad “grabbed the ring” for the second chance that he had been given with me, to be the grandfather of my daughters.  And they both loved my Dad.  Holidays which had always been a reminder of tragedies in years past, were once again a joyful thing to experience.  My daughters of course looked forward to the tasty treats awaiting them at “Pappy’s house.”

When my Dad would retire from his job, he had decided to drive a school bus, which at one point, I swear I would never have thought he would even think of.  But for the couple of years that he did drive, he shared so many stories of the many young children that he drove to and from school.  When we would visit with him, he seemed to have such an excitement about him that had increased since our last visit, he wanted to hear from his granddaughters the laughter and the stories from them, like the ones he had heard on the bus.

But I do still miss the friend, the talks, and the support.  I definitely appreciate everything my Dad did for me.  Most importantly, he showed me the importance when dealing with a difficult situation like divorce, and the impact it has on children.  To his last breath, we did not talk about details about the divorce.  And that was his choice, which I respected.  He made decisions when I was a child, decisions that he had to live with, whether I agreed with them back then or not.  But the decisions were what he felt was best.  He kept from talking about the divorce because he knew that a parent had no right, nor any business involving a child in the process.  And of many of the things that I look up to about my father, this is just one that is something I keep in mind every day.

By the time my father had passed, I had learned about my father, from him and from others, everything that would make him one of the people I will always admire most.  He was humble.  He was definitely stubborn.  He always believed in trying.  And he definitely loved his family.  The paternal side of my family is not known for their longevity, but in spite of everything he had gone through health-wise, he did reach his goal of the age of 70.  Still, there was so much more for my Dad and I to have done, for him to have experienced with his grandchildren.

I miss you Dad.

I always share a story that I wrote and dedicated to my father, “My Dad Was Just Like Me,” which you can find under the tab marked “Pages”.

A Matter Of Fairness

A recent post on one of my Hodgkin’s FB pages asked for the opinion about pursuing legal options because of a lingering and seemingly permanent side effect from their treatments.  The reasoning was understandable, it was not emphasized strongly enough about the potential for the issue to be permanent.

As a survivor, I think all will agree, we have enough on our plates without adding any additional stress and frustrations.  I am not saying we do not have a legitimate bitch, but unfortunately courts and society are not likely to agree.  I am aware of many situations where even at the most extreme ending, death, the legal system often does not support the patient.  You need to prove negligence, in other words, that the doctor was careless, or committed an act intentionally that caused the harm.  And to do that, unless you have proof, you are relying on getting into the head of the doctor at that moment, and that will almost always be a fight that is lost.

Here is one such example, coming from a fellow survivor, who unfortunately is no longer with us.  A known chemotherapy drug to cause heart damage, and if so, almost immediately spotted, supposedly has a protocol for following up with monthly echoes to monitor for any potential damage.  This is not mandatory, and in some cases, unknown.  Go one step further, if the damage is severe enough that extreme intervention is required, such as open heart surgery, you expect everything to be followed by the textbook and the supplies used to be the best quality.  But what happens if a doctor uses a device that has been recalled due to failure concerns?

So, try to follow.  These are two situations with the same patient.  The end result, the patient died.  The oncologist had only planned to do the echo at the conclusion of the entire treatment plan, and it was scheduled.  But according to research, often damage is discovered following the first dose, plenty of time to stop using the drug if this happens.  In this case, the patient, at the end of his treatment, completed it and proclaimed in remission, crashed with congestive heart failure.  How exactly can you prove negligence in this case?  Just because the doctor may not be aware of the better protocol or options, does not mean he was negligent.  Clearly, being aware of the newer research could have made a difference.

Going to the next issue, the patient required a heart pump to assist the heart to beat.  The patient being too soon from treatment not eligible for a heart transplant (was told would need to wait 5 years post treatment), the pump was the only option.  Being smaller than the average patient, the surgeon offered a newer device that would fit his smaller frame.  The device failed, and another surgery would be needed, but by then, too much damage was done to the body, and the patient passed away.  It would be later revealed that the newer style pump had been recalled earlier than when the surgery took place.  How do you confirm if the surgeon knew this or not, to prove negligence?  Yes, common sense tells us, someone had to know.  But without being able to prove 100% negligence…

Then if you feel you have a strong enough case, then you have to hope to find an attorney willing to dig in for the long and difficult fight.  And it most likely will need to be one that if it is going to consume the attorney’s time, it needs to be worth it to the attorney.  There is just so much stacked against the patient or family trying to make things right.  But you have to really consider the stress, heartache, and all the other emotions that will take a toll on your body as you just try to get through the day, which may be hard enough.  I am not saying to not pursue the legal option, I am just saying take all things into consideration – emotions, evidence, etc. before you decide.

Would I pursue legal reparations if given the chance?  I think about it every now and then.  And as I have discussed it with family and friends, I get mixed answers from definitely to being called an ingrate because the doctor saved my life 28 years ago.  But here is my reality.  I was treated with 4 times the lifetime maximum of radiation in a 30 day period.  People who work at nuclear power plants are exposed to less.  Several of the chemo drugs I got are now known to cause extreme side effects to two of the most important body systems, cardiac and pulmonary.  Yet, when I signed my treatment release, all that was said was this, “potential for a secondary cancer or pericarditis (inflammation of the heart).  Well, if you follow my blog, you know the doctors missed it by a mile.  But was it negligence?  I do not think so.  I did catch my oncologist doing something else, running phony blood work which I called him out for, not legally, but he was more than happy to honor my request to transfer me to another oncologist of my choice.

So then, if not the doctor, who would I go after?  The pharmaceutical company that made the drugs?  They should have known more.  Unfortunately, many cancer survivors were not expected to live past 5 years, so why bother late developing side effects as a patient would not live long enough to develop them, or so they thought.  How about the FDA?  They approved the treatments.

I am no so over the limit on pre-existing conditions, a definite high risk for any insurance.  It is not my fault these things have developed in me, or is it?  I chose to be treated and cured.  I should just be thankful and appreciative.  My situation could have ended up much worse had I not been treated.  Right or wrong, there is a legitimacy to that argument.

But at the end of the day, the only way that I find solace, as difficult as it is in my life to get insurance, afford medications, see the necessary doctors, if I added the extra stressors of a fight I had no guarantee of winning, I might not make it to hear the final bell.  I have many other things to deal with and care about while I deal with these issues.  Actually just two, my daughters.  Every breath I take now, is to be here another day for them.  My health has taken enough time away from them.  But this is my choice, and I am okay with that.  Just please, if you are considering legal options, remember, you are definitely not the only one going through this.  The fight in court will not be easy.

Too Strict? Or Not Enough?

My parents divorced when I was three years old.  I saw my father in my early childhood, basically every other weekend.  In my teens, my relationship with my father was strained.  Meanwhile, my mother who had primary custody, lived with her mother and an aunt.  My mother worked second shift, which meant, when I came home from school, I dealt with my grandmother and aunt who were often quite busy.  As my mother married again, in my mid-teens, I would still find myself lacking supervision and direction as I did at my grandmother’s home.  I came and went as I wanted.  I did pretty much what I wanted.

Examples of what a family could be considered would come from friends’ families.  I spent a lot of time in the homes of three different friends.  I was always included and treated as one of their own.  During these times, I would notice the roles of the “father” and the “mother” in a lot more detail than what I had grown up witnessing.

So when I became a Dad, I had a pretty good idea of what I expected from my role as a father.  I needed to make sure that my children not only received a good education, but were encouraged and praised for their efforts.

Needless to say, when it came to being punished, I do not recall facing any kind of punishment, not for lack of discipline, as much as not getting caught.  I never saw any of my friends being punished either, other than “grounding,” the act of being restricted to the home, and telephone usage (we had no computers or smart phones, so this was pretty much a very effective method of punishment.  But at no time, had I ever been spanked or hit as a form of punishment, nor had I witnessed any of my friends being punished in this manner.  That is not to say that I have not seen a parent unload on a child in a public place.  I have seen this all too often.  And also too often, the impact being too extreme that it was clearly abuse.  I have been known to approach a parent who abuses a child that harshly.

It was during my psychology studies that I came to learn, and believe, violence begets violence.  And when a child is punished by the slap of a hand (or worse), then what we are enforcing in the child, is that violence is the only way to correct a bad behavior.  And I do not accept that tenet.

And so, when I became a Dad, I had a clear plan in my mind, if the time came, that either of my children would have to be corrected.  Not even up for consideration, any kind of physical punishment.  I was never hit, my children would never be hit.

One thing was certain, that if I made a “threat” of punishment, I had to follow through.  Whether it was removing a toy, issuing a “time out”, “grounding”, or even cancelling a trip, my daughters knew I meant what I was going to do.  There was no line in the sand to cross.  I am fortunate, my daughters never tested this theory.  Because one of the most important needs of discipline, is consistency.  And I gave that to my daughters from bed times, to school preparations, to even just a phone call.  My daughters know that I will always be cosistent.

So, the other night, the conversation came up, if my daughters felt I was a strict parent, which I always believed I have been.  I am not flexible with our roles – they are the children, I am the parent.  If they have  grade that can be better, I push them to improve it.  When my daughters are with me, they know there are “expectations”.  I purposely do not use the word “rules” in this post, because to me, that implies that there are problems with behavior.  But 99.9% of the time, if either of my daughters were asked to do something, it was done and without even an eye roll.

But the answer that I got from both of my daughters was actually quite surprising.

I am not strict.

I was confused.  I was firm.  I made sure things were done.  I made sure that behaviors were not imposed on other people.  Sure, we played and such, but I made sure that my responsibilities as a father in raising my daughters were met.

So I asked my daughters why they felt I was not strict.  Sadly, they both believed that being strict was related to some sort of physical discipline such as spankings.  And because I have never laid a hand on my daughters, they felt that I was not strict.  But just as I witnessed when I was a child, my examples of a “strict” family through those of my friends’ families, this is what my daughters were witnessing.

I was kind of disappointed that my daughters felt I was not strict.  But to them, the way that I raised them, is not because of being strict, but because I care as a parent (their words, not mine).  I was saddened that they equated strictness to some form of physical punishment.  Having never been exposed to that, either being spanked myself, and certainly not spanking either of my daughters, I had a hard time understanding why they felt this way.  I know I get uncomfortable when I witness a parent spanking, even if lightly enough just to get the point across, because I really do believe that act of spanking, to make a child “good”, actually does build the idea in the child, an act of violence does result in the desired behavior.  And if that is not guided as the child grows up, this can lead to problems.

I tried to convince my daughters that I was strict.  But just as other things that I want them to learn from me, it is the end result that will count.  I want them to learn most importantly, that to care, to be respectful, and to be consistent, are all important qualities when it comes to raising their children some day.

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