Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Inspired By…”

05 Feb 2020
5 Comments

You Are Cured – The “Myth” And The “Birth” Of The Long Term Survivor


“I am positive that we can get you into remission.  I don’t like to use the word ‘cured'”.

These were actually the words spoken to me by my oncologist when he had diagnosed me with Hodgkin’s Lymphoma.

As I have begun drafting my 30th Anniversary post, this is one of the conversations that had popped into my head.  I had thought that the whole idea of treating cancer, was to “cure” it.  Not just settle for putting it into remission, the technical term for making the cancer go away.

Cancer patients are often told of the magical “5 year” mark, which probably all of us equate to the term “cured.”  And we have every reason to feel this way.  After all, if the cancer has not come back after that time, would it not be logical, and fair, to say we have been “cured?”

Like I said, I am gathering my thoughts for hopefully the most inspiring post yet on “Paul’s Heart.”  “Cured” is a very powerful word.  In its simplest form, it means as a cancer patient, “we are done with it.”

I am fairly certain that the reluctance of my oncologist to say I was “cured” my have either been from a liability angle or perhaps did not want to be compared to an act of God, but what if, in hindsight, to be able to be “cured” required a lot more than just having no more traces of cancer cells?

From the very first appointment post treatment completion, we set our sights on the day that we never have to set foot in an oncologist’s office ever again, nor should we have to, being “cured”.  And unless you have had this experience, you cannot blame us.  And decades ago, most of us were given our release once we hit that five year mark.

But those of us that are long-in-the-tooth can attest to, decades ago, it was very rare to hear of anyone surviving cancer.  There was no social media to “ring the bell” when done with treatments.  You mainly only heard when people died.  This attitude continued well on into the end of the 20th century.  So, we rarely heard anyone beating cancer, but we also never heard of people living a long life after cancer.  And evidently, medicine did not either.

Turn on the television, and chances are you will see a commercial for some sort of drug.  And during that commercial, will come a long list of side effects.  These are known as short term side effects for the most part, that will either happen soon after you take them, or once the medicines have a chance to impact the ailment.  It is unusual that you will hear anything about the long term effects either because they have not been studied yet, or, and this is key, a certain side effect has not happened enough to be publicly documented with a warning.  (See the post I wrote about taking statin drugs).

For many cancer patients, this is exactly what happened to us.  We were all given information as to the short term effects of the treatments from nausea to hair loss and more.  But very few were aware that there would be long term issues, including medicine.  After all, remember that “5 year mark”, or the “cure”?  The fact is, there were no long term studies done back in the 30’s, 40’s, 50’s, 60’s, 70’s, 80’s, and not until the 90’s was the idea even approached about the possibility of late developing side effects from the extreme treatments received earlier.  In actuality, these long term survivors approached their doctors with symptoms that often case did not make sense for their age or current health status, and therefore really had nowhere to turn, and in many cases ignored.  Or, if they were “lucky” that someone might have an idea of what they were dealing with, hoping the doctor had the experience how to handle the issues.

For me personally, I stopped seeing my oncologist in 1995, five years after I received my final treatment.  In 2008, by dumb chance, my primary care doctor ordered a cardiac test for a symptom I had been experiencing for several months without complaining.  36 hours later I was on an operating table having my life saved with an emergency double bypass, caused by radiation damage for my Hodgkin’s.

Why was this not caught sooner?  Because, remember the “5 year mark?”  There was no long term studies, at least not popularly known at that time, that cumulative and progressive damage would occur from such high exposures as I experienced.

I could go on and on about this issue, and have done many other posts on it, so I will not.  My point is this.  In 2020, more doctors and oncologists are more aware of these late developing side effects.  More importantly, medicine has now realized that part of dealing with these side effects, is surveillance.  And if cancer patients are going to live longer than the five years, and the potential for these late effects is cumulative and progressive, then surveillance is necessary for the rest of the life of the cancer patient.

And if the idea of being “cured” of cancer is being done with it, meaning we just put it behind us forever, are we really cured if it is necessary to be watched for the rest of our lives, for what comes next, then are we really “cured?”

I am not saying this is a bad thing at all.  I am eternally grateful to be here thirty years later.  But because of long term cancer survivors like myself and so many others, medicine now knows that cancer survivors need to be followed up, forever.  And it is important that “newbies” understand this, that it is easier to deal with an issue that is just developing (determined from a baseline) before it gets too bad such as the “widow maker” I dealt with.  It is just as important to encourage the prognosis of remission, to emphasize the importance of surveillance for the rest of their lives.

Many of my fellow long term survivors, and I, feel as though we were guinea pigs with our treatments.  And perhaps we were.  And because of the issues we developed throughout our survivorship, we are feeling like guinea pigs again.  But the good news is, medicine is finally catching up.  Medicine knows what it means to survive cancer.  And doctors need to do their part to make sure patients are not mistakenly thinking it will be behind them.  This is not to say that you cannot enjoy life in remission.  By all means, I have done so.  But a cancer survivor must also be diligent.

Perhaps my oncologist was correct in not wanting to use the word “cure” but for a different reason.  For me, I still use the word remission, and feel I cannot use the word “cured” for the reasons I just mentioned.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart
02 Feb 2020

The Sham Of The “Best Interests of The Child”


Being an advocate, it is hard to turn off the “ping” that goes off, triggering a call to respond to something that goes against an issue that you fight for.  Before I begin, I must state for my trolls…

THIS POST  DOES NOT REFLECT MY INDIVIDUAL SITUATION CONCERNING MY DIVORCE OR CUSTODY ISSUES IN ANY WAY, SHAPE, OR FORM.

I was doing what I often do, helping one of my daughters in determining what courses she should take for next year.  This particular daughter, has some big eyes.  She wants to do and take everything.  Initiative.  You have to admire that.  Once she has expressed everything she is interested, in an effort to help her whittle her list down to a more manageable and doable schedule, she still found herself in a bind with one or two courses that she wanted to take.

Admittedly, you probably will not find many kids who are willing to take on extra classes, just because.  But as I helped my daughter to prioritize what was important to her, I asked her what she felt especially strong about, passion.

I was about to present an option to her that I know she was completely unaware of, but I did.  Her school district offers after school courses, which, two of her choices that she was looking to enroll in, were actually available outside of school.  Meaning?  She could take the courses that would make the difference academically, and the extra courses she could take to help her decide if that is what she really wanted to do, without wasting valuable credits.  I have her curiosity and we are currently working on that situation.

But it is what I found on one of the pages of the brochure of the community education provided by the school district, that is what triggered me.

This is a snapshot from the brochure, and I have intentionally scratched out the instructor’s name, coincidentally, a family court lawyer.

Now unless you have been through the process of custody, you have no idea the what it is like to have the rush of bile into the throat upon seeing this.  If you have never gone through a divorce and are about to, you see it as an opportunity how to DIY (do it yourself) with important information such as the “sixteen factors” which do exist in the state’s law, but the “tools that can be used to aid in presenting your case to the court?”  I have a problem with that.

The timing of this class is unfortunate as well.  This was taken from the Fall brochure, but as I researched, the instructor is teaching another one of these courses in the Spring, so, in spite of the hope that lies ahead, it seems that at least someone is teaching “business as usual” instead of the great news of the new process that will hopefully be coming.

You see, the state in which this is occurring, is one of the latest, and one of the last, to recognize the rights of both parents in a declaration of 50-50 shared legal and physical custody.  For many, we still cannot understand why this is not a guarantee for all states, and still there are some that have not begun the process to legislate this.

Many states have approved, and more are in the process of approving, laws that guarantee the rights of both parents (when applicable) to legal and physical custody.  Prior to this, in spite of the “sixteen factors,” if both parents  met those factors equally, one parent still was likely to be given an award of full or primary custody.  Full meaning just that, primary meaning that children would get to spend overnights with the other parent, visitation if you will.

Back in the 1950’s, mothers were stay at home, so courts often ruled against the fathers for custody, simply because they were never around, BECAUSE THEY WERE WORKING!!!.  They were penalized for being the only one bringing in money, by not being considered for custody of their children.

I will spare the chronological progression through the decades, but needless to say, in the 21st century, it is more the rule than the exception, that in a two-parent family, both parents work.  So it would make sense then, that perhaps there should be an adjustment to the assumption of custody.  Only in recent years, have states begun the process of giving both parents equal rights of custody.

In Florida, also one of the states lagging behind correcting this injustice, in December of last year, the legislature filed a bill that would give equal custody to both parents, presumed, not by way of contesting and objections.  In the state where this “course” is being taught, the bill was filed back in May of 2019, still yet to be passed into law.

I will get to the opponents of the position of equal custody in a moment.  But first, the obvious argument to which their can be no objection to.  I challenge you to find a reason why equal and shared custody should not be presumed.  And here is the example.

Husband and wife, a.k.a. father and mother, never have any negative history in their family in regard to their parenting.  Both work.  Both play an active role in their childrens lives.  No history of domestic issues.  Regardless of what the current status of any laws in any state, if something happens to one parent, such as a debilitating illness or even worse, death, the surviving (or healthy) parent would then assume 100% custody of the children.  Why?  Because that person is the parent.  So, if that parent is to be assumed capable of taking over custody in the event of a tragedy, why should that parent not have the equal right to the children when both parents are capable?

You cannot argue that.  If that parent is good enough when “forced” into full time single parenting, that parent is just as good to have the right to be the parent with equal time shared with the other parent.

This is the exact scenario that is being argued and states are in the process of passing laws in favor of, making this thinking the presumed situation.  Or as advocates for shared custody would call it, literally, “the best interests of the child.”  And this is in agreement with psychological professionals as well, that as long as both parents exist, it is in the best interests of the children to have equal time with both parents.

There are two main groups that will be very vocal against this.  The first of course, will be the lawyers.  They argue that the children risk being exposed to domestic violence if the children are not given to one particular parent until the situations are completely researched.  In other words, assume the worst of one of the parent, until that parent can litigate their rights for equal custody.  And yes, children do need to be protected from abusive situations.  But not at the innocent expense of a parent and children.  Especially when there is no known evidence of any kind of domestic abuse.  The cynic in me will go one step further and say of course the lawyers will not support a bill like this, because financially, they have everything to lose.  Imagine, parents being given equal custody means no more lengthy drawn out and expensive court filings and modifications.  For the parents, this is a win because of all the money saved that can be used for the children.

And of course, the other group are the bitter spouses/parents.  The ones who feel entitled (i.e. only a mother can take care of children), filled with vengeance for a relationship ending in break-up, and a phenomenon called “the baby mama” (ones who get pregnant for the purposes of collecting court determined and ordered child support).  Obviously it is called that, as the male cannot get pregnant, and only the mother has full control of the situation.  Just looking at the descriptions of the above and tell me what you see missing.  The relevance of what role the children have in these selfish behaviors… NONE!  How is this in the best interests of the children?  It is not and everyone knows it.

Another group does exist, and is definitely for the best interests of the children, and that is advocates against domestic abuse.  We all know these situations exist.  We have also heard the nightmares of children services not responding or doing enough to protect children in harms way.  But to throw a blanket over the whole custody issue claiming domestic violence as the reason for presuming less than shared custody, to protect the child, then other children are harmed by being denied the opportunity of equal time with both parents, who are not exposed to that violent environment.  In other words, being punished for something they did not do.

We all experience this type of situation at one time or another in our lives.  We get punished as a group for something someone or some group has done.  An entire class gets extra homework because someone was talking during class.  Yes, that will teach the innocent ones.  All employees lose extra “break” time because a supervisor has an ax to grind with one employee.  Instead of the supervisor dealing with the employee, the boss makes all employees pay a price, which he hopes will result in those employees “correcting” the offending employee.

Do you see how awful this thinking is?  Punishing someone for something that they did not do?  Remove the parents from the equation, leaving only the children.  How is restricting a child from one of their parents, whom they have known the entire time that their parents were married, never witnessed any violence in the home against the other parent or themselves, with both parents more than capable of taking care of the child, in the best interests of the child?  It isn’t.

That is why, like the two states mentioned above are in the process of doing what so many have already corrected, and others need to come to the realization, in the families where children have two parents, that in the ending of that relationship, the children need both parents… EQUALLY!

I wonder if that lawyer is teaching that in the class.  Or does she follow the lead of the temperament of the “students” simply looking for less expensive advice, emotional support and “understanding” of their situation, and lead those how to follow the path if they feel sole custody is what matters and how to get the system to order that?

Posted in Adoption, Bullying, Education, Family and Friends, Inspired By..., Politics | Leave a comment
30 Jan 2020

How Road Trips Have Changed


“99 bottles of beer on the wall.  99 bottles of beer.  Take on down, pass it around.  98 bottles of beer on the wall.”  The things we did as kids to occupy our time on road trips.

Of course nothing beat harassing the driver in the car behind ours because they had to look at our stupid faces we made for however long they followed our car.

God help you if you got stuck riding on one of these things for any duration.

Ah… good times.

As a grown up, all I was worried about was having some good tunes to listen to, enough to last the length of time it took to arrive.  Because nothing was a better gauge of how much time you had left to go, than, how many CD’s you had gone through already, and still had to go.

Then, there are the road trips as a parent.  Along with all the necessary baby supplies, there was now the on-board entertainment.

With two children, all that was needed was for both to agree on which movie would be watched first.

And then they become teenagers.  I was expecting to recall the old days of stupid and nonsensical songs.

I want to be clear.  I was blessed with two great travelers.  They started at a very young age with a 16 hour non-stop flight from China, each, and endured several trips, many longer than a six hour drive.  So, my daughters keeping themselves amused is not really a concern.

As I drive with them now, they keep themselves entertained.

And so began the escalation of the level of entertainment.  As my daughters peruse social media, one stumbles upon a particular crude meme, which by itself, stands alone as a conversation starter.  But as my older shows it to me, the gears between my ears go into reverse, and recalling the road trips of my childhood, I take what my daughters have given me…

Upon realizing what I am looking at, the challenge is issued.  How many words can we come up with that will rhyme with the sound “a-shun” to make a catchy slogan to go with the meme.

That killed about a good half an hour of time on that long drive, and provided a lot of words, and a lot laughs.  Then it was back to their phones while I continued the drive.

Out of the blue, I hear from the back seat where my older daughter is sitting, “so Dad.  Who do you think is the better whistler?”

By now I had been driving  four and a half hours straight, listening to “Roxanne” by Arizona Zervas for seemingly the dozenth time, not an exaggeration either and the song is ten times worse than the “Roxanne” by The Police.  Before I answered my daughter, I realized that I actually did hear both of my daughters whistling along to the song, that evidently my efforts to drown out the music, drowned out the whistling as well.

Regardless, I normally do not tune my daughters out for any reason, and having done so in this instance, I was still able to give an answer to my older daughter’s question.

Me:  You know I am not going to answer that question.  There is no “better than” ever, when it comes to you and your sister.

Sibling rivalry goes back centuries.  But over the last several years, I had been noticing a ramping up of “competition”, mainly stirred up in a one sided fashion, always the same daughter looking for the verification of a notch over the other sister.

Besides the fact that my daughters are both adopted, they are legally sisters, but come from different provinces.  They have different skin complexions, different shapes.  Even their hair is different in texture.  The bottom line, I love them both the same.

Decades ago, my mother had been a newspaper reporter for a local paper.  One of her fellow reporters had gone to report on a car accident involving a young driver.  My mother told me the story, how the while the reporter was interviewing the mother of the teenager, who sadly had been killed in the accident, the reporter had discovered that the mother had another child.  To witness my mother tell me what happened next, was pure horror.  The reporter asked, “so which child was your favorite?”  I was not even a teenager myself when I heard this story, but it has always stuck with me.  I could not believe someone could be so mean and insensitive to ask a question like that, EVER!  But before my first daughter was ever placed in my arms, regardless how many children I would have, I would never allow a question like that to be asked of me.

Over the years, I have been asked repeatedly about the “so who is better” by my daughters, more often by my older.  The comparison could have been about karate, eating habits, and of course school.  School comparisons are the hardest to be neutral about, because unlike comparing habits and activities, grades are black and white.  And at least once a year, maybe even twice, I am challenged about the difficulty or ease of school grades.  Both are good students, that is for sure.  But that is definitely where the similarity ends.  They have different study habits.  Both have different interests in school, and therefore have different academic plans.  And yes, grade results are different.  For the most part, they have not had the same teachers for their courses which also plays a role.  It is wrong for either to feel that one just has an easier time, or “comes natural”, and I remind them both of that.  But we are entering an even more difficult time next year.  One daughter has begun the SAT process, and my younger daughter will begin her testing next year.  So I will not only have grades to disprove in importance for comparison sake, but now will be results of the same test, taken by both, for the sake of their continuing education, which of course I am hoping for both.

This issue has its moment where it is a concern to me.  Self esteem development during teen years is tough enough without feeling good enough cognitively.  And if you are an older sibling, there is definitely that feeling that there should be an edge when it comes to grades and scores.

Or could it be more than just sibling rivalry.  What if, as parents, their mother and I actually created the situation that has at least one daughter striving to be different, or better?

I swore I would never do this to my kids, and it happened.  Sure, they looked cute dressed alike, something that was once specific to identical twins, and hilarious unable to tell who was who.  But except for Hallmark Cards or Normal Rockwell paintings, I personally do not care for dressing children identical.  But they were cute.  As time went on, my older daughter would hear the question, “are they twins?” when clearly they are not, but it actually became an irritating question to her.  She loved her sister.  But it bothered her to be considered a twin.

Complicating the matter, was when the decision was made, and I need to state, not by me, and quite possibly not originally agreed upon by both of my daughters, that they would share a bedroom.  They each had their own rooms for the first three years, and then they ended up in the same room, “because that is what sisters do.”

Combining these two factors, I cannot help but wonder, dressing alike, sharing the room with each other, did we as their parents create, or at the least enable the competition levels of the sibling rivalry to escalate.  Admittedly, dressing alike did not allow them to stand out from each other, and having them share a room, when they did not need to, prevented them from developing their independence.  And now, there seems to be a struggle to stand apart, and the only way to accomplish that, is to have higher marks, or to be “better than.”

It seems like a monthly conversation that I have with both daughters.  I emphasize how much I love them both the same.  There should be no competition between them.  The things that they cannot control that one would have an advantage over the other, is their age, and the time that they were adopted.  Everything else is being determined by nature and nurture.  As they get older, their own individual interests have either developed, or are beginning to develop, and maybe those will change.

And besides loving both daughters the same, they will both get the same encouragement and support in their goals.  That should be important to any parent.

Posted in Adoption, Family and Friends, Inspired By..., Recreation | Leave a comment

Post Navigation

← Older Entries
Newer Entries →