Paul's Heart

Life As A Dad, And A Survivor

28 Years… Approaching A Milestone In Survival

I woke up this morning, logged on to my computer, and the “counter” on “Paul’s Heart” was the first thing that I saw.  And as my counter is programmed, counting down days and months, it does not get any simpler than on this date, years to go.  I am just two years away from the milestone of 30 years, cancer free.  The math, 30 – 2 = 28.  Today, I received my final chemotherapy for Hodgkin’s Lymphoma, 28 years ago.

Early on in my survival, I often looked at my survival very casually, like no big deal.  It was just something I knew would happen.  But as I got in to the second decade of my survival, things became difficult.  And during my third decade, well, just go through my archives, and you can see the many struggles I have faced over the years.

And I do appreciate the positive thoughts and congratulations, I really do.  However, it is the same for me every year.  As I realized I made it another year, I know so many who are struggling right now with their Hodgkin’s or the late side effects from their treatments.  Worse, I remember all of those who have passed away, their bodies no longer able to tolerate the accumulative issues.

I am quickly becoming one of the “old timers” in  the circle of survivors, those who have been out of treatment for decades.  I am also becoming one of the longer survivors as sadly, many have passed away.  Last year was an especially tough year for me emotionally.

There have been many changes in my life over the decades.  My doctors had begged me for years, to finally give my body a chance.  While they said they could not cure me of the developing health issues from radiation and chemotherapies, they did assure me they could slow the process down.  The goal was put into its most meaningful to me, “to see my daughters graduate, get married, and to be a grandfather.”

From the years 2008 through 2012, I did the exact opposite of slowing down.  With my personality, I wanted to prove following my open heart surgery (from radiation damage), I was going to be the exception.  Instead, I tried pushing myself harder and harder and all that resulted was multiple trips to the emergency room.  I was going in the opposite direction of what my doctors wanted.

I made the changes I needed to finally.  And now I believe I have the chance to see all those things in my life happen.  My youngest daughter is at the age now, where she realizes just what I have gone through in my life, even though my experience was decades before she was born.  Both of my daughters understand the many health issues that I deal with, and lay ahead.  As my youngest puts it, “Daddy, you are one of the strongest people I know.”

One thing that has not changed, I remain the advocate I swore myself to be 28 years ago.  I remain active in the cancer community via group and individual support.  I continue to meet patients and other survivors, offering encouragement and support.  While treatments and survival have improved, it is still no easy task to deal with, and we all have our own unique ways of dealing with them.

So, as I usually do today, I recognize 28 years of survival.  I do not celebrate it.  I have met hundreds of other patients ad survivors in person, and have “met” thousands over various internet support groups.  I remember those who have passed away.  I think about all of those who are either going through treatment or dealing with late developing side effects.  But this year, also in the front of my mind, are two friends in particular, one just newly diagnosed, and another having recently dealt with a major side effect less than two months before she gets married.  The following is just a small collage of all the people who came into my life (with the exception of my dad) who have faced their own battle with cancer, since March 3, 1990, and knew or know, that I will always be there for them.


What Exactly Is A Deadbeat? A PSA For Those Who Do Not Really Know The Answer

From a grammar standpoint, I am the last person who will ever critique anything, whether it be spelling, detail, or any particular aspect meant to have an impact on something.  But I do have a peeve that I do believe is only fair.  That is, when people use words that they either do not know the true meaning, or use them in an erroneous manner, all for the purpose of making them appear more intelligent than they really are.

One particular word that gets treated this way, “deadbeat”.  So, as I normally try to help and support those with cancer related issues, adoption related issues, disability issues, and so on, I want to help straighten out the confusion over the actual word, “deadbeat.”

“Deadbeat” is commonly thrown around in reference to divorce circumstances, especially when it comes to support issues.  But the fact is, the word is definitely inappropriately used.

DEADBEAT is someone who willfully and persistently fails to perform an expected task.  Some websites elaborate and perhaps dilute the actual meaning by referring to “deadbeat” as lazy, lacking ambition.  The term is meant to criticize or insult by what the accuser making the statement thinks that they know about the particular situation.  The key to defining what a “deadbeat” is, is it willful behavior?

First, let us set a couple of ground rules.  “Deadbeat” is a gender neutral term.  It can apply to both male and female.  Next, being a “deadbeat” is not just limited to a monetary commitment, but rather any kind of act that is committed willfully and intentionally.  A person can be a “deadbeat” in reference to custody by willfully violating a court order of custody.  So, from this point on, I will only refer to the general neutral terms, spouse or parent, as both are capable of this moniker.

Next, we have to clarify situations that are all too generalized, resulting in the erroneous use of the term “deadbeat.”  For the purpose of this post, I will refer to the act of paying child support, since that is when the term is most often used.  Is every parent who is either unable to pay support or not in full, a “deadbeat?”  Absolutely not.  And again, you have to look at every situation individually, if it really is any of your business.

A parent could have lost their job.  An incorrect support award may have been ordered, pending an appeal.  A major health crisis may have occurred.  Even a simple technical error in computer systems failing to register payments.  It all boils down to, “was it intentional?”

Perhaps the easiest way to determine if it was on purpose or not, again, if it is any of your business to figure out, is, what kind of parent is the one creating the lack of fulfilling the obligation?

There are parents out there who WILLFULLY ignore their children.  They do not even want to acknowledge that they have children, who do not even see or wish to see their children.  A parent in this type of situation may just be more likely to be called a “deadbeat” because there is no desire for a physical relationship with the child, hence, why should the child support be necessary.  To actually label this type of a parent as a “deadbeat,” definitely does not do justice because the hurt goes beyond just not paying the support, but clearly causes harm to the child.

Then there is the parent who WILLFULLY withholds a child from the other parent, often times over failure to fulfill their support obligations.  But again, with the key to being a “deadbeat” being a willful act, who is truly the “deadbeat” in this situation?

And finally, there is the parent who does all that can be done legally, in spite of set backs, in spite of health, in spite of sabotage by others, and other factors that are no fault of the offending parent, who keep in communication with their child(or children), who do what they are able to visit with their children, again in spite of the interference and harassment by others.  A parent who never objects to paying their support obligation or amount, even if unable to in whole or partially.  Is this type of parent “deadbeat?”  Hardly.

Those that willfully and intentionally refuse to pay, usually find means when coerced by the legal system.  Threats of sanctions such as license suspensions, passport seizures, and even jail are usually enough of a deterrent to convince the offender to pay, and pay right away.  In other words, they had the means.  It was an intentional act not to do so.  Yes, that is the “deadbeat.”

But it is the parent, who no fault of their own, may be unable to pay the amount in full or even partially.  And it only gets worse from there.  Again, remedies are in place to enforce the support, but as the saying goes, “you cannot get blood from a stone.”  So what good do remedies do, if the means are not there?  Sanctions, without the ability to correct, means that the situation can only be expected to get worse.  And it does not take long until the results are insurmountable.  How does a parent earn money, when a license is suspended and cannot drive to work?  How does a parent earn money, when incarcerated for arrears?  How does a parent keep or get employment with an incarceration to earn money to pay their obligation?  They do not.  And the cycle will only keep repeating.  Exactly, where does the “willful” part come in, that this type of parent should be called a “deadbeat?”  It does not.

Let us take the last paragraph one step further.  It is one thing with the above paragraph for the situation of falling into arrears to just happen naturally.  But when the situation is accelerated and escalated due to  the vindictive and vengeful behavior of a scorned spouse, exactly, where does the “willful” part come in on the part of the person obligated to the support?  It seems to me, the only “willful” part is coming from the spouse due to collect the support.

I have many friends, all in different situations and positions of this discussion.  We are all respectful of the individual situation.  We have a parent who does not want anything to do with their child.  There is a parent who wants to spend more time with their child, and the other parent refuses, worst of all, for no justifiable reason other than “just because I said so.”  And there are many of us who do everything within our power, within our ability, to remain as strong a part and influence in our children’s lives.

As an adult child of divorce myself, being divorced with children as an adult is not any easier.  But one advantage that I do have, is that I know what I do not want to happen with my children emotionally.  I know the importance of having both parents remain in their childrens’ lives.  I personally know the difference of what one missed phone call can make, and the affirmation of each visit made.

I hope this helps to clear things up.

Why Bother Using The Word Cured?

Cured.  The only thing a person wants to hear after being told they have cancer.  And it should be that simple.  You get a cold.  Take some meds.  You recover.  Broken bone.  Gets set.  Heals.  But why is it such a problem to nail down the word “cure” when it comes to cancer?  I can only speak from the diagnosis of Hodgkin’s Lymphoma.  I have no idea if patients of other cancers are given the same speech that we as HD survivors are given.

This is exactly how it went for me 30 years ago when I was diagnosed, in the words from my oncologist:

“I don’t like to use the word cured.  Instead, once you hit five years, in remission, it becomes less likely that it will come back.”

So, that should mean that I am cured, right?  But why would he not just say that I am cured at that point?  I was willing to go along with just saying “remission” for five years.  Why could I not say I was cured once I hit the 5-year mark?  I want to use the word “cured” dammit!

My signature of emails that I communicate  to other cancer patients, includes the words “in remission”.  I used to use the word “cured”, but unfortunately, I knew too many who had either relapsed or developed new disease.  Which is not to say, that either is extremely common to occur, but rather, as people only reach out when a need arises, the percentage of people who fall into this category is still much lower than those who do not relapse or develop new disease.

Here is how I see it.

In November of 1988, I was diagnosed.  I began radiation treatments for what I believed I was staged at 2a.  At the completion of those treatments, I was told I was in remission.  By June, I was dealing with Hodgkin’s again, but now staged at 3b.  I had disease below my abdomen which either was not noticed before, or had been there all along.  Doctors did not say if it was new, or did I relapse.  It did not matter.  I underwent chemotherapy.  Again, I was told I was in remission.

And so I waited.  Month to month.  Year to year.  Hoping to reach that five year mark, so I could use the word “cured”.  I want to say everything was laid out to me as far as concerns: relapse, new disease, secondary cancers, and for the moment, at least the next ten years, this was all I thought about, unaware of just what was developing in my body as a result of being exposed to over 4000 grays of ionized radiation (trust me, this is bad, look it up, and I actually know people who had higher exposure), and toxic treatments using drugs such as Mustargen, Bleomyacin, and Adriamyacin (again, look up to what doctors now know about how bad these treatments are, especially in the long term).

As each year went on, and another year I got to hear “still in remission,” my anxiety about a relapse began to lessen.  And yes, once I hit the 5-year mark, it disappeared.  And so did I.  My doctors no longer had any need to follow me up anymore.  I used the word “cured”.  Why would I not?

I am approaching my 28th year cancer free next month.  Why can’t I use the word “cured?”  So what would it be called if Hodgkin’s came back?  New disease?  A relapse?  I suppose it would all depend on the cell structure and typing, if it was identical to the pathology from thirty years ago, probably a relapse.  But if a different pathology, then new disease.  And what about the secondary cancer?  While fingers would point to my HD history as an increasing factor, at the very least, they physiological change to my body and its immune system as a result of all the trauma and treatments would at least give me understanding as to why.

Of course, as I have frequently posted here, I have more than a dozen diagnosis related to my Hodgkin’s history that I became all too aware of back in 2008 with the need for life saving open heart surgery.  But at no time, was I ever fearful of my Hodgkin’s coming back.  That is, until 2010.

An episode of extreme pain, one that would result in me passing out from the level of pain, would have me ending up in the emergency room, with the following conversation:

Dr.:  I have good news and bad news.  The good news is, your Hodgkin’s is not back.  The bad news is that you have a 6mm kidney stone.

I had to do a double take.  Did he just say my “Hodgkin’s is not back?”  Of course it is not back.  It has been 20 years, why would it?  But here I was, in my reality.  That even after all this time, the first thing that will be looked at with my history, is the possibility of my Hodgkin’s being back.

I have seen so many different interpretations of this consideration, cured or remission.  I guess it is all about how you want to look and consider it.  But as one fellow survivor pointed out, for many of my survivors, they may be blessed without having gotten knocked to the floor with a late developing side effect, or at least, be oblivious as to why their body is doing or acting a certain way, or as many of us have found out, better to know and understand why, and how to adjust so as to at least slow down a process (it cannot be reversed) that will always progress and worsen.  I am not saying there is no future at all.  But at least knowing my health issues, and how to treat and or prevent episodes has made a huge difference in the quality of life.

And yes, that kidney stone was bad news.  I wrote about it a long time ago.  Check out “Birth Of A Kidney Stone” in my “pages” section of the blog.

So yes, even after all this time, because it has never ended, I use the word remission.  And I am okay with that.

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