Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

Understanding The Need For A Painkiller


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Once again, the media and Monday-morning Medical Quarterbacks are proclaiming that Prince, a pop music icon, died an addict.  This is so offensive to me.  There are so many different circumstances that need to be considered, and they all have to be considered.  And when all is said and done, you will understand that Prince physiologically did die as a result of an opioid drug, but he most certainly was not an addict.

First, I am going to state my qualifications to make this argument.  Like millions of others, I am a long term cancer survivor dealing with all kinds of late effects from cancer treatments that were meant to cure us of our cancer, only leave our bodies a wreck decades later.  And only now, is medicine finally catching up to us, realizing that we lived beyond the 5 year magic mark, long enough to develop late side effects from both chemotherapy drugs and radiation therapies.  I have personally met hundreds of other survivors in my situation, left to deal with pain associated with these late effects that medicine does not seem to be able to help us manage or better yet, cure.

Complicate this fact, that like me, many people’s thresholds for pain are so extreme, from dealing with decades of unrelieved pain, find themselves dealing level 2 controlled substances for relief, and that often is the best that can be had, is relief, not cure from their pain.

Let us understand, if you have a headache, you take a Tylenol, or something else with acetominphen in it.  Some take an extreme dose, and often this will do the trick.  But even a proven pain killer has its risks, especially liver complications.  But normally, this mode of treatment does provide some relief to this acute pain.

But then look at the average worker who has to deal with chronic pain.  The person who cannot afford to take time off from work, even if injured.  When the body is injured, it needs at least to rest, if rest is not possible, then medical intervention.  Just as with antibiotics however, your body builds an immunity to drugs once you continue on them.  And unless you are able to not do the tasks that are aggravating that pain, the pain will only continue and get worse.  That of course, means stronger means.  But pain meds can only do so much.  Enter opioids, which clearly help to relax the mind, as they are not meant to cure the pain.  But by taking these opioids, an employee, or a rock star can continue to function, to earn their living.  This does not make that person an addict.  That person is just trying to survive, earn their living, all the while doctors are unable to cure the patient of the pain, and the patient is unable to remove themselves from an aggravating factor of their pain level.

Eddie Van Halen, Steven Tyler, Prince, all suffered from needing pain relief.  All these artists were committed to their craft.  And that came at a price, that in order to continue to be successful, they needed to do what was keeping their pain levels out of control.  And the only way to deal with that was to either stop what they were doing, not an option to them, or take pain killers.  Only when their lives are out of control, is their pain actually addressed, and they realize that they cannot continue putting the physical stress on their bodies.  But this does not make them an addict.

As I mentioned, I used to work in an environment that constantly increased pain for me, that I already had.  But I could not afford to take off from work, and there is no cure for the radiation damage done to my body.  The only way that I could get through a day was to begin taking stronger pain killers, and as the tolerance for those pain killers grew, my pain continued to escalate, because along with the relief of the pain, I was still exposing my body to the issues that were increasing the pain and aggravating the issues I was dealing with.  Within four years, I was using some of the top opioid pain killers, all the while continuing to work.  But I was definitely not an addict.  I was doing what I had to do.  But physically, the abuse on my body, working with pain and injury, numbed by the opioids, only continued to make things worse.

Which is why, my employer had assisted in me finally giving my body the break that my doctors had been begging me to do, and enter the disability process.  Removing myself from the physical demands that had been escalating my progressive issues, allowed me to finally deal with my pain without relying on opioid painkillers.

It makes no sense to me, that our society will not accept medical marijuana which would accomplish the same thing as an opioid pain killer without the addiction.  But without you having the personal experience dealing with extreme pain levels that many of us go through on a daily basis, with no opportunity for cure or relief, you have no right to judge.

But having gone through open heart surgery, having my breast bone cracked open, kidney stones, and a raging septic case of pneumonia causing unimaginable pain, opioid pain relief was all that got me through those incidents.

It is a shame that Prince, a musical genius, was not able to give himself the opportunity to try to heal from his pain.  He may have died from the medication, but it is not fair to call it an overdose, as overdose implies an intentional act.  Prince, I believe was only trying to continue the only thing that he knew how to do, perform and produce, and that meant no rest.  And the only way he could continue to do so, was with the help of prescription painkillers, but that did not make him an addict.

But if medicine and society really wants to put an end to events like the death of Prince, then medicine and society have to first, stop putting pressure on people to continue to work when they are legitimately hurt.  And medicine has to learn to do more than just medicate pain, it has to cure it.  And until medicine and our society develop empathy for those of us who deal with chronic pain, and most likely for the rest of our lives, I speak for everyone, you have no right to judge about how we live a quality life as best as we can.

Sometimes, The Best Advocate Is Yourself


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Advocate ad as defined in the image, “one who pleads the cause of another.”

In my life, I have taken on many advocacy roles, and the list almost grows daily.  From health, I advocate for patients with their care, and their rights in the work place and in the rest of the world.  This started around the time that I was diagnosed with Hodgkin’s Lymphoma, and the first hurdle that I had to jump in my care.  I considered it unacceptable, and knew that if it was happening to me, it was happening to others.  Buy my advocacy in health did not stop with the world of cancer, but has expanded to cardiac, long term survivors of cancer, geriatric care, and simply, the right to receive medical care when it is needed.

With having two daughters adopted from China, I became an advocate for families seeking and dealing with adoption issues, not just internationally, but domestically as well.  Because of having children, I took an interest in public education and fighting to make sure my daughters got the best education possible and supporting those trusted to educate my daughters.  Which of course led to my first and only political run, for local office, school board.  And of course I began paying more attention to politics on the larger level.  But to be honest, the lessons I learned at the local level leave me feeling hopeless at the higher levels.

Getting back to children, well, not just children, I have always been an advocate fighting bullying in any environment.  Sadly, society still does not recognize by ignoring the bullying in schools, those bullies grow up to be adult bullies.  There are plenty of programs to deal with this, but unless they are used or enforced, they are paper tigers.

And then there is Parental Alienation.  This is the blatant act of causing mental and emotional harm to a child, by interfering with the relationship between a child and another parent, usually through divorce.  Talking negatively in front of a child or even as “matter of fact”, causing the child to miss opportunities to spend time with a parent, manipulating the child to develop a negative concept of the other parent, are just some of the examples of Parental Alienation.  And I will not beat around the bush with this, PA is child abuse.  Children have the right to love their parents.

But there is more to being an advocate than just having a cause to fight for.  There is more than just defending someone who just does not know where to start to find the answers to start their fight.  Perhaps, they just do not have the strength to express their needs.  Sometimes we have to be that voice.  And in many cases, it is as easy as just showing someone “where” to begin, or even guide them along their course.

There are also times, when even the slightest effort, without realizing it, you can become an advocate.  Just being there for someone, as an “ear”, makes you an advocate because you are showing someone, who may feel alone, that you care.  And that act alone makes more of a difference than doing nothing at all.

No matter the cause I advocate for, it has made me who I am.  And it helps me to deal with the many things that I face.  I have no quit in me when I know that something, or someone is completely wrong.  And I have paid a price over the years with employers, friends, and family because of my decision not to pick battles.  Even the smallest issue to me, if you let enough of them go, it leads to a big issue.  And I have learned, if you are dealing with the smaller issues alone, when you face the bigger ones, you will still be alone, and that fight is even more difficult, because the other side is not alone.

You will never be taken more serious, when you, yourself, advocate for yourself.  After all, you know more about your particular situation than anyone else.  Sure, the help of another advocate is great, but your own words will be the loudest and get your heard.

Offensive Judgement


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The headline that came across my Facebook news feed read, “Woman Who Donated Hair To Cancer Patients Mistaken For Transgender Man And Harassed In Restroom.”  Everyone reading this should be completely offended by this.  But this is what our society is becoming… a bunch of judgmental knownothingatalls.  You know the kind, just by “looking” at someone, you just know something has to be.

At least back in the racist and bigoted decades (okay, they still exist), a jerk could make their clear assumption (remember, when you “assume”, you make an “ass” out of “u” and “me.”) based solely on the color of the skin.  But today, with so much attention drawn to religions (i.e. Muslim) and lifestyle preferences, those who choose and are taught to be bigots cannot just make their assumption by just looks, though they do it anyway.  And why?  Because if they cannot see it, and they just feel it, it has to be true, right?

The story mentioned above should have been a beautiful “give back” story.  Someone had thought of someone else going through one of the worst things possible, cancer, and dealing with one of the most difficult side effects, hair loss.  So, she had her hair cut off and donated it.  Now having tried this myself, when the hair is cut off, the hair needs to be a certain length, pulled into pony tails, and cut.  Of course, then the hair that is left has to be touched up.  This can leave the hair even shorter than intended.  But that is the great thing, for most, hair grows back.  Unfortunately for this donor, hers did not grow back fast enough for a bigot who felt the need to harass someone who had just helped someone else deal with a major struggle with cancer.

And I hate reading a story like this.  This type of story is becoming all too common, because we simply do not accept, what we do not understand, or even know at all.

This was not the first time I have personally dealt with this behavior.  A couple of years ago, I was attending a local establishment with a fellow cancer patient and his family.  He was bald from the chemo, and he was denied entry into the restaurant where we had planned to just sit and listen to some live music.  And why was he denied?  He was bald.  He was also wearing a baseball cap, and it was worn the right way – not turned backwards, tilted.  His pants were pulled up to his waste, and the rest of his clothes were quite appropriate for a young man in his early 20’s.

But this jerk bouncer, claimed that the hat was inappropriate, in spite of us informing him why my friend was wearing the hat, denied his entry.

This whole thing about “looks” is getting out of control.  If we are happy about our appearance, who the hell are you to decide that someone should be confronted just because you do not like that someone looks a little too brown, or hair is too short.  Instead of moving forward away from prejudice and bigotry, we are careening in reverse gear because of issues that are not new, just only now coming to discussion.  The fact is, these issues have always been there, and have never bothered anyone.  But as each generation gets taught intolerance, this behavior is only going to grow, especially when our political leaders encourage the discrimination.

And if you need any bigger example of just how bad this is going to get, Google the story mentioned above.  Exactly what did this woman do to be harassed?  NOTHING!  ABSOLUTELY FREAKING NOTHING!!!  And what right was it of this bigot to confront the woman in the first place?  SHE HAD NO RIGHT TO DO THAT!!!

It is simple, “you cannot judge a book by its cover.”  Most reading this blog, have heard of this expression.  But just as “cliff notes” were not enough to pass our tests in school, those passing judgment by the cover of the cliff notes are even worse.

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