Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Education”

Because It Can Be Done. Because It Should Be Done.


28-years

Disclaimer – this is not a political commentary on the recent election, but rather an issue that will clearly be impacted by the results.  I will not publish any negative attacking style comments.  It is my intent of this post to look for a solution, not just because it can be done.  Because it should be done.

November is always a difficult time for me.  The first of many negative events that have happened in November, had the most profound effect on me, because it changed the direction of my life forever.

28 years ago, after stalling and deflecting attempt after attempt to get a mysterious lump on the left side of my neck looked at, for more than a month, I stepped inside the door of an “oncologist” having no idea what that word meant, only that I had been referred to the doctor there.  Without even greeting me, the doctor began spouting off “Hodgkin’s Disease is a very treatable form of cancer…”  Yes, it happened just like that, that cold.  To be fair, oncologists cannot afford to get emotionally all wrapped up in their patients, because, well, it is just too difficult with many outcomes with tragic results.

There are some who are reading this, who I actually worked with back in 1988, and are hearing this story for the first time, though they were very familiar with my cancer diagnosis.  But as I left the oncologist’s office that evening, contemplating what I was going to tell my fiancé and family, I drove by my employer.  I do not know why I did that, but that detour would have a definite impact on whether I would beat cancer.

The drive itself, short in distance, felt more like a drive through the state of Florida.  I definitely had no focus other than I had just been told I had cancer, in spite of no testing being done.

As I passed the company store that I worked at, I noticed the light was on in our CEO’s office.  It was not uncommon of Jeff to work late.  Jeff had taken over the company business from his parents.  Very soft spoken, he was still able to convey what he needed done and expected.  And just as it had been a “mom and pop” business, he treated his employees like family.  So it had only been natural that I was drawn, on the way home, into the parking lot, and enter the store.

I stood in Jeff’s doorway, in obvious shock.  As quickly as he said “hey Paul”, his expression of surprise turned even quicker to concern, as he could tell this was not just a social visit.  I had explained my doctor appointment to him and what I was about to be diagnosed with.  Then we began to talk about  what I may need as far as care, and time, anything else.  I had health insurance with Jeff’s company, and being only 22 years of age, I really did not know anything about insurance, coverage that a person should have, or even how to use it.

I told Jeff that the doctor was going to send me somewhere else, because his office did not accept the insurance that I had.  I am a creature of habit, and once I am introduced or begin something, I follow through.  I do not pass the buck to someone else.  More importantly, there had been an emotional connection already, and I had begun the process of fighting my cancer, and being told this doctor would not be the one to treat me, did not sit well with me, nor did it sit well with Jeff.

“Paul, first thing in the morning, I am calling our insurance rep, and I am bumping up our coverage to the top plan.  I don’t want you being delayed, or being refused anything you need to get through this.”

For those who read this, that were more co-workers back then, Jeff was a good man.  He cared about each and every one of us.  And on that night, he made a decision that may not have been a smart business decision as far as expenses go, but he made a decision he was able to make, and wanted to make.  He did not have to make the decision.  But he did.  And true to his word, by the afternoon, not only did I have a coverage that would allow me to be seen and treated anywhere, but so did everyone in our company.  Because Jeff cared.

Which is why, it is so frustrating to me, that 28 years later, we, as a country, are still arguing over health care for people.  For crying out loud, of the two major political parties, the party fighting against health care for all, claims to be Christian based, family values, yet, they do not see fit, that we, as a civilized country, no matter what religion or lack of, we are good hearted people.  There is absolutely no reason that anyone should ever be denied medical care.  That is not socialism either, that is called us being civil and decent.

Upon completion of my treatments in March of 1990, I would run smack into the wall of discrimination.  Employment (part time work to supplement my full time job), life insurance, and so on.  I kept hearing the same thing over and over again.  “Sorry, but you had cancer.”  “Perhaps five years or so from now, we might be able to consider you.”  Eventually, an opportunity would come up for me with another employer, good financially, but they would not offer me health insurance.  But at that point, I was already five years out from my treatments, so I was not worried about insurance.

As I got older each year however, the need for insurance became a concern for me.  And of course, I kept being told the same thing, “sorry, we can’t insure you because you had cancer.”  In 1997, I was offered yet another job, which offered group insurance, and since it was a union position, they had to give me the insurance.

Now of course, in the 21st century, President Obama created the Affordable Care Act.  On paper, it was supposed to be a good thing because it was going to do what no one else had been able to do so far, and that was reduce the number of uninsured.  I was insured already, and the ACA was not going to have an impact on me, so I did not pay much attention to it other than the fact it would finally eliminate insurance companies from discriminating against people who need insurance the most, the sick.

I get it.  Health insurance companies are only in the business to make money.  And they will not make money if they have sick clients.  That is why they denied everybody who had a pre-existing condition.  Now, there were a lot of other issues with the ACA, but the good thing that did come out of it, was more than 20 million people finally had health insurance.

That said, the ACA did not solve the escalating price gouging of insurance premiums, price gouging increased of prescription drug prices, and of course, unjustified high cost expenses of for profit hospitals (I remember seeing an itemized bill charging me $30 a day for a pillow following my open heart surgery).  But the ACA did do what it was meant to do, get more uninsured people insurance.

It is common sense, it costs less money to keep people healthy, through prevention and proper intervention, than to deal with such extreme health crisis costing millions of dollars to treat.  So it makes sense to make insurance affordable to all, so that prevention can become the main driving force towards lowering our health care costs.

This past Tuesday, a historical event occurred.  A non-politician was elected President of the United States for the next 4 years.  My personal issues for or against Trump, there is one thing about his candidacy that I will not support without some sort of compromise.  And I do not want people telling me to calm down or not “jump to conclusions.”  I know what I heard Trump say, and I believe his efforts and ability to do so.  Whether the rest of the government can prevent the rapid fire repeal of the ACA as Trump has promised –  “I promise on day 1 of my presidency, I will repeal Obamacare.” – remains to be seen.  Possible cabinet members have expressed optimism that Trump will repeal and replace, but there is nothing available or ready should Trump decide on day 1 to repeal the ACA.  And as a cancer survivor, with numerous late effects caused by the pharmaceutical industry from my chemo treatments, I now find myself in need of the ACA because I have no insurance, and many pre-existing conditions.

I will not support any repeal of the ACA that does not spare the pre-existing condition clause, or the college student clause.  There are options available to not cause 20 million to lose their health insurance and face death (remember the “death panels” we had been warned about if the ACA was approved but NEVER HAPPENED?).  People losing this coverage will die.  So if our government must get rid of or modify the majority of the ACA, so be it.  But leave the pre-existing condition and student coverage alone.  If you feel it must be repealed, then for crying out loud, have the replacement ready first.

My former employer, Jeff, did the right thing as a person, perhaps not as a businessman, but as a person, not because he had to, but because he wanted to do it, because he could do it.  It can be done.  It should be done.

The Need To Vote


election-day

I stay away from politics for the same reason I stay away from discussing religion.  It does not matter if I am having conversations with friends, or writing posts.  We would all just be better if we kept our beliefs and politics to ourselves, and not force them onto each other.

But clearly, this presidential election has been so extreme.  There is so much on the line, no matter who you are voting for.  And that is just it, you must vote for your voice to count.  If you are silent, you have no right to say anything for the next 4 years about your dissatisfaction with how the greatest country in the world is being run.

But you need to do more than just vote.  You need to be informed.  Being informed not only means learning the issues that are important to you, but to the country as well.  Being informed means knowing your rights to vote without being harassed or intimidated.  If you are a registered voter, whether a college student, a minority, or a retiree, every vote will count for this election.

There will be those who vote against a candidate just for the sake of voting against.  There will be those that actually support the candidate that they will vote for.  There will be some who agree with every issue of their candidate’s position, and there are those who will vote on a single item that is personal to them.  And to be honest, that is how I am actually deciding my vote, on one single item.

By the end of the day, with all the votes cast, almost as important as the election process itself, will be the day, and the days after.  A lot of rhetoric has been shouted.  A lot of accusations have been made.  Friendships and relationships have been shattered over the span of this election cycle.  As a country, we need to begin to heal, so that  as we look to the election of 2020, we prevent the hostility and negativity that surrounded and clouded this election cycle.

And I get to say this, because I voted.  Make your vote count.  Make your voice heard.  Let us begin to heal.

Defining “Me”


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There is an expression that is common among cancer patients and survivors.  “I don’t want cancer to define who I am.”  I have heard this stated many times over my survivorship of over 26 years.  And my initial thoughts pretty much echoed those sentiments.  Many simply want to move on with their life as if cancer never happened.  And certainly, none of us want to be referred to as “someone who had cancer.”  But lately, I have been wondering, is the expression perhaps being spoken incorrectly?  Is it possible that we simply do not want it to “control” who we are?  Perhaps we do not want it to “change” us.  So maybe it is not so much as “defining” us, as much as it is “forming” us.

I have decided that I am going to take the perspective of cancer, not necessarily defining me, but rather, reminding me who I am, what matters in life, and what people really need to think of, when they meet me, or see me.

Until my diagnosis back in 1988 (almost 28 years ago this month), to say I was under the radar with even my own self-recognition would be an understatement.  Nothing I was doing stood out, going to college, dated, listening to music.  There was nothing really to indicate that life was never anything more than just going day to day.

But the diagnosis of Hodgkin’s Lymphoma kind of changed me, it woke me up.  My only knowledge of cancer at that time, was that cancer killed.  I was going to have to dig deep, to a place inside that I was never aware that I had.  I was going to be challenged physically and emotionally not just for months, but for every waking moment of every day.  I was going to have to deal with daily side effects that were not only painful, stressful, but exhausting.  Just the mere thought of the “tasting” the chemo injection was enough to make me vomit.  This is called “anticipatory nauseas”.  I was able to “taste” this particular drug 24 hours before it was even given to me.

I did what I had to do to get through that time.  The simplest thing I did was to “minimize” the length of time.  Instead of 8 months of chemo, it was 16 injections of which only 8 made me nauseous for a total of 3 hours each time.  Therefore in my head, I was convinced I would only deal with these issues for 24 hours.  Sounds much shorter than 8 months.

As each month went by, it did get harder and harder.  But as I got through one cycle, I knew I could get through the next cycle.  And so forth until I was half way done, and then knowing I got half way through, I could get through the next half and then it became about how many more to go, after having gone through so many before.

A definition of me, pointed out by having cancer, was that I did have what it took to get through this horrible experience.  It showed that if something was so important for me to get through, no matter what I was put through, I was going to achieve it.  It proved I was never going to let anything be taken from me.

This mentality would benefit me many times in life after that.  I battled an employer for discriminating against me, just because I had cancer.  I fought for disability rights with another employer after it was discovered that I was dealing with late effects from the treatments that cured me of my cancer.  Accommodations needed to be made to make it possible for me to continue to work, and I knew that was my right.   I fought for that right.  And yes, just like the days  went through my treatments, there were bad days.  My boss would make things difficult for not only me, but as if to put pressure on me, he would often make it difficult on my co-workers who would then turn their frustrations on me, in hopes of them putting pressure on me to back down.

Well, just as with cancer, I did not back down.  And my remaining years with that employer were quite peaceful concerning my health issues.

And there are other examples in my life, post cancer, that I demonstrate this same mentality and determination.

So, if by having had cancer, if reminding me of what I always had inside of me to face any challenge in life, then yes, perhaps cancer has defined me.  And that is a good thing.

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