Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

Survey Says?


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It is difficult to understand divorce, or the divorce process itself, if you have never gone through one, or been a participant in a divorce.  It is easy however, to offer unjustified judgment based only on your own selfish and personal beliefs, that a failing marriage should be worked out, no matter what the cost or to whom, literally and figuratively.

Originally, this post was going to be just a simple “google” of the top reasons that people get divorce and brief explanations.  But I think I was looking for the wrong information.  And after finding several web sites stating reasons, I realized that in spite of myself being in the middle of a divorce, there is a difference between “reason” and “cause”.

It only should have been obvious that things such as money, domestic violence, and infidelity should be listed as reasons for a divorce, especially top reasons.  Instead, what I discovered, were that events such as those are more or less results leading to a divorce or perhaps the cause of the action of filing, but are far from the actual “cause” of the divorce.  And it really is complicated without unbiased support to deal with some of the issues that I am going to list.  The thing is, that even for what I consider a most basic reason for me having filed for divorce (now twice), after seeing actual causes explained, I can actually go back in retrospect and see in my own relationships when things started to go wrong.

Normally, I have always been a relationship-minded person when it came to dating.  Which is why, when it came to reciting marriage vows, there should not have been any problem with honoring the vows.  They are simple enough.  Sickness and in health… did that in both marriages.  Richer and poorer… did that in both too.  Good times and bad… there were plenty of each in both marriages.  Though “obey” was no longer a staple of marriage vows like back in the 50’s and 60’s (for good reason no longer part of the vows), “respect” and “honor” were spoken.  It is when one of the vows you have taken, has been broken by either one or both of the participants, that the marriage will begin to unravel.  And without help and guidance, the cause of the marriage collapse will result in the effects of the marriage collapse.

After perusing through web sites such as Imom.com, Women’s Day, and several others, I came to a consensus of six common causes, not reasons, resulting in the filing of a divorce.  In no particular order…

Lack Of Communication

This topic is actually going to cover several issues.  But it is clearly the beginning of the end if there is no basis of communication.  Without communication, you cannot discuss issues such as parenting, finances, or emotions.  Without communication to resolve, resentment is certain to follow.  And it is when issues are discussed beyond the married couple, if not done so with someone qualified to offer unbiased commentary, others comments will only likely fuel more discontent.  But no marriage has any chance to survive if you do not possess the ability to talk about issues before, during, and after they have arisen.

Parenting Desires And Expectations

This is huge, and completely underestimated.  Unless you have discussed whether or not becoming a parent is part of your future as a spouse, there is no way in Hell you should say “I do.”  It is too late, fifteen years later when you discover your spouse never wanted to have children, when the whole time, both have been going through motions that parenthood was somehow in the plans of the family.

But if the decision is mutually agreeable to have children, the communication concerning parenthood must continue.  You need to make sure that you have the same general ideas on raising children – religion, schooling, discipline, etc. – because having two different parenting styles will only someday serve to position the children against the parent with the opposing style unaccepted by both the other parent and the children themselves.

Personal Baggage

The whole idea of marriage, is that two become one.  You are supposed to be able rely without question on your spouse.  But it is when you lose that trust, either because of lack of communication, or perhaps disappointment by how a situation was handled, the baggage builds and becomes unbearable to sustain by oneself.  Baggage (health, employment, financial, etc.) that piles and piles, was never meant to be sustained and dealt with by only one spouse.  It is expected as witnessed by the vows, “sickness and health, richer or poorer, good time and bad,” that the any failure to support the other, no matter how minor it may seem, will be enough to start tearing away the seams of their marriage.  When one spouse learns that they are on their own, that spouse will then begin to just pile their issues on themselves believing that they can only rely on themselves from that point on.

Not Even Just Friends Anymore

This is not even a root cause, as much as more of an effect.  Spouses not only end up sitting on separate ends of the couch, but perhaps even different pieces of furniture, maybe not even in the same room or floor of the house.  Any words that are spoken end up being words of anger, resentment, conflict.  Spouses may even feel as if being parented by simple directions from the other spouse (when done too much and too loud, this is referred to as “nagging”). Both spouses end up feeling neglected and ignored, perhaps even referring to each other as being “lazy” with the relationship, no longer even giving an effort.  And this goes way beyond the concept of “letting themselves go” at that point.

Selfishness And Disrespect

Spouses are supposed to respect and rely on each other.  But when respect for each other is lost, that is when outsiders are given invitation and interject their opinions to the one-sided discussions, only to give validation and false support, instead of what is needed, allowing the spouses to resolve the issue themselves.  When more time is spent ridiculing your spouse behind their back, and as others witness the distance that has grown between spouses, it is not difficult to realize when simple friendliness or playfulness, even in front of the other spouse, to be misconstrued as disrespectful flirting, and not with the spouse.  Backstabbing, sarcasm (publicly or not), criticism (publicly or not) completely undermine a marriage.  Constant arguing where there must always be a winner, or neither or only one willing to apologize, both lose, neither willing to work anything out any longer, if at all.  Neither will want to put out any effort.

Not On The Same Page Financially

You enter into a relationship either financially equal, or at least have the understanding why the marriage is not supported equally.  But things happen.  The economy is always unreliable.  Employment is lost.  Interest rates escalate.  Operational costs for the home increase.  Spending increases on lavish luxuries and attempts to restrain spending result in covert means to obtain materials things no longer affordable.  Money issues by themselves are difficult enough to deal with, without having to deal with any of the other issues mentioned above.  Without having the communication skills and respect to work with each other, spouses cannot possibly expect to work out arrangements to modify budgets, sacrifice expenses, simply do without “stuff.”  Whether a temporary or permanent event, without understanding, support, and encouragement, a marriage will never survive.

Once any of these have taken hold, anything that happens after is purely cause and effect.  Only an unbiased counselor, whether religious or professional, can possibly have the clear and uninvolved, non-judgemental tools to help a couple work things out, and even then, there is no guarantee.  Even multiple attempts may not work.  But if the differences of the two spouses involved are not allowed to deal with and resolve on their own, without interference, and without biased judgment, the marriage is done.  And it will not matter how many effects that develop from the cause.  At that point, it is all about damage control, and needing to do what was not done in the first place, communicate for a civil end.  The irony. All that can be done is look back and wish things could have been different but that will not make anything better.

 

Thank You Michael


Today has not been a particularly great day for me.  I am dealing with divorce related issues that have me quite frustrated and taking me away from productive efforts needed elsewhere.  Someone must have sensed I either needed a break, or even a reminder, that no matter how bad things have gotten for me as of late, to never forget who I am, and that I do matter.

Yesterday, I published a story about Michael, a young man who lost his life to the same cancer that I had faced at his age.  I spoke about our interactions and similarities with each other.  It was really meant to be nothing more than a tribute for a friend.  What I got back in return has just left me sitting here speechless, in tears.

Michael’s mother had been going through his room this morning looking for something in particular, when she came across some of Michael’s belongings that she still had not gone through yet.

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This is my “heart” pillow that I used when I had my open heart surgery.  When I found out that Michael was not given one to help comfort him with coughs and sneezes from his recovery of heart surgery, I mailed him mine.

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The book pictured on the left, is my second effort published with a story called “Life On A Class 5” comparing the journey of cancer, with taking a whitewater rafting trip down the toughest of rivers…no easy task.  But even more touching, was the fact that he had my chapter bookmarked by keeping a newsletter that I wrote an article on cancer survivorship for Memorial Sloan Kettering, dealing with “survivor guilt”.  But trying to make a personal connection, one survivor to another, Michael kept his treatment completion certificate, dated August 6th, 2013 in my book as well.

I wrote a story several years ago called “Jennifer’s Story” (in the pages section of this blog).  It was about how I spent the entire time counseling this teenager, who would also pass from Hodgkin’s, and how she never spoke a word to me.  I just sat with her, keeping her company.  But when the time came, that hospice would be taking over for me, the only time I ever heard her speak, was to ask me, “you will still come to visit me won’t you?”.  All the time that I spent with her, I never once thought my time mattered to her.

With Michael, it was a bit different, because I was making friends through his family, so there would have always been that contact.  But otherwise, I had no idea how much our interaction actually meant to Michael, until this morning.

Thank you Michael.

Michael – One Year Later


I have learned a lot about Michael in over a year.  Actually it has been more than a year.

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I already knew that Michael had an older sister.  Her name was Alyssa.  Together they shared a very unique thing between them.  Their birthdays were not only in the same month, but they were also less than a year apart.  Alyssa and Michael grew up very close to each other.

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The closeness between these two siblings is a full credit to their mother Josephine.  Josephine did everything with her children, early in their childhood and also into their young adulthood.  She supported them both in every venture they undertook.  In recent years, Alyssa pursued fiction and poetry writing.

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But their love for each other, and support for each other would be put to the test when Michael was diagnosed with Hodgkin’s Lymphoma at the age of 23.  But with such a strong foundation between them, Josephine and Alyssa would make sure that Michael got through his treatments, and Michael would make sure that his mother would get through his treatments.

I learned of Michael through an internet support page for lymphoma patients.  I followed his journey from his second treatment on through his last.  I would meet Michael for the first time, through internet technology, Facetime, during one of his final chemotherapy treatments.

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It was actually Michael who helped me prepare for dealing with my father’s cancer journey.  It had been over two decades since I had set foot in a chemo suite, but by Michael “taking me along” to his treatment, I saw that the chemo suite is nowhere near the dungeon-like room I underwent with my treatments.  And it would prepare me for when I would accompany my dad for his treatments.  Even more critical, Michael offered me a suggestion for my father to deal with bone pain associated with Neupogen shots, something my father’s oncologist failed to mention, taking the allergy medicine Claritin, unofficially used to treat bone pain, other pain meds unsuccessful.

I had been arranging to travel to Florida to pursue public speaking opportunities in regard to my upcoming 25th anniversary in remission from cancer.  But as Michael had just finished his treatments, and had been officially told he was in remission, I also decided to pay a surprise visit to someone I had admired.  I had never witnessed such bravery and courage for such a young man going through such an ordeal.

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He was as thrilled to meet me, as I was to meet him.  We talked quite a bit about similarities between us, as if the more we found in common with each other, the more likely he was going to experience the same success and longevity.  Our birthdays were just a day apart.  We were both diagnosed with Hodgkin’s Lymphoma at the age of 23.  And we both enjoyed root beer and chocolate chip mint ice cream.

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More importantly, we both beat Hodgkin’s Lymphoma.  And this is where I wish this post would end.

Whereas it would be decades before I would develop severe late side effects from my treatments, Michael’s severe side effects would be discovered just a couple months following his treatments.  A drug used for decades in the successful treatment of Hodgkin’s Lymphoma, Adriamyacin, also carried its risk, affecting the heart.  Unbeknownst to Michael, his family, and his oncologist, Michael was one of the few to actually develop congestive heart failure because of the drug.  Of course, as most “average” local hospitals go, they are not prepared to deal with side effects that occur with cancer patients.

Michael had to be flown by helicopter, two hours away from his home, to undergo emergency heart surgery to place a pump into his chest to assist the heart in its pumping action.  Many weeks later, he would finally go home, just before Thanksgiving.  Michael was on the road to recovery.  Again, this is where I wish the story ended.

Two days before his 24th birthday, the pump failed, sending Michael back by helicopter to the hospital that treated the original problem.  A blood clot had stopped the pump from working, and needed to be replaced.  And from there, it only got worse.  Everything went wrong, and Michael could not endure anything more.

Michael passed away January 6th, last year.

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There are so many questions we all have.  No mother ever thinks one day she would have to care for her child dealing with cancer, but never in her worst nightmare did she ever think she would bury her son.

As a survivor, I am struggling with Michael’s death as well.  I have been involved with the cancer world for over two decades.  I have seen the progress being made in less intrusive diagnostics, better and safer treatments, and many more people surviving cancer.  But one glaring thing that does not seem to have made any progress, is the protocol for following patients and survivors.

Okay, to be fair, survivors of cancer are now being followed.  Now that medicine realizes that cancer survivors are living longer than the magical five year mark, and since research has never concentrated on late effects, we, as survivors are teaching medicine what to do.  But in Michael’s case, though I do not know the exact details of Michael’s passing, one thing I do know, the lack of a protocol to follow patients undergoing treatments with drugs known to have the potential of harm to a body’s organ, contributed to Michael’s death.  Adriamyacin is known to destroy the heart in some cases in as early as the first dose.  But protocol only calls for a base-line before the treatment begins, and then several months after treatment ends.  But the drug, if it does any damage, is done early in the treatment schedule, but there is no protocol to catch this deadly situation.  Doctors simply rely on a patient complaining of not feeling well.  And in Michael’s situation, he never complained about anything he was going through with his Hodgkin’s treatment.

I have asked many doctors why a simple echocardiogram would not be ordered to monitor this deadly side effect, and the answer is always the same.  It is too rare a side effect, and therefore, not cost effective to order an echocardiogram.  Now I do not know about other cancer treatments, but there are roughly 50,000 new Hodgkin’s cases each year, that is how rare Hodgkin’s is compared to breast, lung, colon, and skin cancers.  So, according to medicine, it is not worth spending $2.5 million dollars to make something protocol to follow up a patient for this deadly side effect, but it is worth spending millions saving his life.  To medicine, it was not worth spending the money on an echocardiogram, but a young man lost his life, a mother buried her son, because medicine decided he was not worth it.

There has been some things that have come, bittersweet of course since Michael’s passing.  Florida Gulf Coast University awarded Michael his Bachelor’s Degree in Political Science posthumously as he was nearly through with his degree program when he was diagnosed with his Hodgkin’s, and had actually enrolled for classes to complete his degree when his heart issues developed.  His degree was accepted by his older sister in his memory.

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Michael was also given an award from a local charity dealing with the visually impaired where he volunteered teaching visually impaired people how to use computers, as Michael was born with impaired vision, which never stood in his way of his many accomplishments in his young lifetime.

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And the latest, was the creation of a college scholarship in Michael’s name to be given to a fellow FGCU student in need.  The first scholarship was offered this Fall.

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Tonight, Josephine, Alyssa, friends and family gathered this evening to remember Michael, and pay tribute to his memory.

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But there is one thing if I can do for Michael and his family, it is to make the reality of creating and mandating a protocol that anytime a drug is used, that has been proven to have even one incident of a fatal result of organ failure, to follow up closely for such a side effect.

No, it will not bring Michael back, but we have learned  a very sorrowful and unnecessary lesson having lost a young man, who had so much life ahead of him.  And for the brief time that I got to know you Michael, I miss you.

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