Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “June, 2016”

My 26th National Cancer Survivor Day


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Today, we honor and recognize cancer survivors.  It makes no difference what your definition of “survivorship” might be.  Some choose to include those even just diagnosed and I am more than fine with that.  Because anyone unfortunate enough to hear the words, “you have cancer,” has only one instinct, to fight and take this disease head on.  This is a “survivor” attitude, and that makes a newly diagnosed patient a survivor.

But for those who definitely want to shout out to those who have completed treatments, whether it be yesterday or sixty years ago, shout loud.  There are over 14,000,000 survivors of any number of cancers, and some of multiple diagnosis of cancer, or relapses.

As I muddled through my childhood, I had dreams.  But none of them included the following statement, “this is my 26th National Survivors Day.”

Cancer research, cancer care, and survivorship has come a long way since before my diagnosis, and after my diagnosis.  Even those not diagnosed by cancer have improved in their knowledge of cancer from the days when patients kept their diagnosis secret because of false stereotypes like cancer being “contagious.”

There are many of us who are mourning the loss of a loved one from cancer.  There is not doubt that there is still a long way to go to rid the world of cancer, but that is another post.  This post is about hope.  This post is proof that we are almost there.  This post is about  being happy for someone who has gone through so much.

Over my 26 years, I have met hundreds of other cancer patients and survivors, many of them personally.  And I am in awe regardless of their seniority from recently in remission, to even having met someone well into sixty years of remission.  Each and every person I meet, whether in person or on-line, is an inspiration to me.  You see, not only do survivors have their “cancer-related issues” to deal with, not just day to day living issues.

So please, if you know someone who has survived cancer, let them know that you are happy for them.

As always, do not forget those who have lost their lives to this disease or the complications of the disease.

1440700063544  Paul

Diagnosed with Hodgkin’s Lymphoma in 1988, treated with radiation and chemotherapy, in remission since 1990.

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.

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