Paul's Heart

Life As A Dad, And A Survivor

28 Reasons To Be Thankful


28

This time of year is always difficult for me.  One would think that after all this time, it would not be such a hard time.  But I can actually cut my life in half, as if I had led two distinct different lives.

I have written repeatedly that I am not a big fan of holidays, especially when they are clustered together as the Winter holiday season of Thanksgiving through New Year’s Day.

It was 28 years ago, the week before Thanksgiving, that I first heard the words “Hodgkin’s Disease,” cancer.  And there was no reason for me to having been given that news.  I was happy.  I was healthy.  Never really gave much thought about anything.

But as I grew frustrated about a health issue, the stronger the denial.  What started out as a “common cold”, led to an increasing pain that I felt was sports related (major denial), was eventually diagnosed.  Were it not for a friend/coworker, who referred me to a doctor to get my “sports” injury looked at, I would never have been steered in the direction that I needed.  Six second opinions later, it was finally diagnosed.  And so, the holiday season of 1988 became one of anger, denial, bargaining, depression, and into the new year of 1989, acceptance.

The holiday season of 1988 was taken away from me by cancer.  And while I often feel this resentment and occasional anger each year, there are clearly things that I have to be thankful for because of what happened during this time period.

I am very glad that I did not punch Dr. G in the face that day that I got the diagnosis.  Things would have turned out much differently had the law gotten involved.  And honestly, it was not his fault for giving me the bad news.  It was his job no matter how wrong I felt he was looking at the wrong chart.  Talk about denial.

I am thankful for the 28 years I have experienced, okay, maybe not the bad times, but definitely the good.  My life has been touched by so many over the years, because of cancer.  And my life has touch others as well.  I have met hundreds of other cancer patients and survivors over these 28 years.  And we are all there for each other.  Just like the Geico commercial says… “if you want to save 15% on your car insurance, you go to Geico, it’s what you do,” just like for us cancer survivors, it is what we do.

I am thankful for the acts of discrimination that I faced.  First, being discriminated against for employment lit a huge fire under my behind, to never let anyone tell me that I could not do anything just because I had cancer.  Second, being discriminated against for health and life insurance, because of being too much of a risk.  Well guess what losers!!!!  You saved me 28 years worth of investment in your loser companies because I am still here!  And you did not get my money all this time.

I am thankful that after nearly three decades, I have seen so much progress in treating Hodgkin’s that my treatments are no longer used except as a last resort, reducing the risks of developing late effects like myself and so many others have to deal with.  And also, though progress is slow, at least patients are now being followed more closely during and after treatment, but there is still too much that needs to be done.  But there has definitely been progress since 1988.

I am thankful that I got the chance to be a father to two of the most beautiful and thoughtful daughters a man could ever have call him “Daddy.”

1459800853696

And 28 years later, I am thankful to each and every one of you in my life.  Whether you were in my life before I was diagnosed, there when I was diagnosed, or even just joined me last week.  You are all a part of this big puzzle I call my life.

Though I struggle with my emotions at this time of year, I never, NEVER take for granted what my survivorship has meant to my family, my friends, or myself.  But if it is alright with you, I would just prefer to be thankful.  I do not need a holiday to remind me of that.

“Sick” Of Selfies?


012214-sgg-insert5-400x

Perhaps nothing causes greater criticism than someone who posts a “selfie” and explaining that they are dealing with an illness.  Many people, get frustrated enough, that they take the action and “unfriend” someone just because they do not want to see posts that relate to someone being sick.  And while, posting every blink of an eye or sneeze may seem like way too much information, there just might be a benefit to someone who posts about a medical issue they are currently dealing with.  And I should know, because there was a time that I did not have social media during one of my critical health periods, being diagnosed with cancer, and 26 years later, dealing with late side effects from the treatments that medicine did not prepare for, as survivors were not supposed to live long enough to develop any.

No one has posted more personal stuff about medical history on line, than me.  I think that is a pretty safe bet.  And yes, I have made people cringe, unfriend me, stop talking to me completely.  But I have also had overwhelming responses, a growth in the number of people who understand me, and even more of a blessing, learning that there are others who are in similar situations like me.

There are a couple of reasons that I post certain things on social media.  And yes, admittedly, there are times that those posts come back to bite me in the ass because there are those with horrible intentions, trying to use this information against me.  There are laws supposedly in place to protect me from discrimination, but come on, let us be real, there are ways around them and we know that.  So then, why expose myself to the negative ramifications of revealing issues concerning my health?

Well, the first thing I need to express is, I do not do it for pity or attention.  To be honest, both of those are the last things I need when I am dealing with a crisis.  I have always claimed that anything I post, I do it so that others who are going through similar crisis or struggling with issues, might just see that they are not alone.  Also, there are times that I myself am looking for answers, or even seeing that someone who has gotten through similar problems has overcome those struggles.

But now it is being reported scientifically, the benefits to “sharing” information on social media.  Now, it should also be stated, once you go public with anything, it is out there forever.  If you are like me, I do not post anything I am ashamed of, and I clearly know that some of the things that I post, will be used against me as some point of my life.  But my moral compass requires me for the benefit of the good that comes from my posts, to publish many of my commentary.  Not to mention, there is clearly a therapeutic value to putting your feelings into words.

Look, I will never discover a cure for anything, and I am pretty sure I will not have an opportunity to enter a burning building to rescue someone.  But if my experiences helps to inspire someone to fight harder by knowing they are not alone, then I can live with that.

The need to post on social media needs to be seen as the helpful tool that it can be.  To share information, to guide for assistance, and to show that a person does not need to struggle alone.

You can find an article referring to this issue at the link below:

https://www.sciencedaily.com/releases/2016/03/160321110437.htm

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.

Post Navigation