Paul's Heart

Life As A Dad, And A Survivor

Hurricane Irma – One Year Later


At this time last year, I was as secure as I possible could be.  Because of the uncertainty of the path of this storm, which was not determined literally until 24-36 hours before, which was too late for the expensive evacuation process, I had made the decision to secure myself behind storm shutters and ride out the storm.  It was not a decision that I made lightly, but as I said, the uncertainty of the path, and the expense of evacuation were both deterrents in me leaving my home.  All I could do was prepare as best as all of us who remained, were instructed to do.  As I write this, at 12:30pm, three hours later from that time, as previously warned, the eye of Hurricane Irma would pass directly over my city.

You could hear the storm grow in severity as it approached with the winds rattling the storm shutters harder and harder.  Unsecured objects being lifted from their sedentary spots and hurled harder than cannonballs into buildings and shutters.  Of course, being enclosed, there was no way to witness the destruction that was occurring outside.  I could just hear it getting worse, louder and louder.

A calm would come eventually, as the eye passed overhead.  Nothing near the beauty as shown in movies, but it was definitely much more calm than just minutes before.  Against warnings, as the broadcasters knew many would do, I ventured outside to experience this eerie calmness.  It was still raining, and the winds had died down from the 140mph, to at my guess, 20 to 30mph.  And within minutes, the winds instantly returned to the triple digit speed the storm arrived with.

A couple of hours later, Irma was gone except for some remnant bands.

Under normal circumstance, September 11th, would be a day that I remember what happened to our country.  And really, given the charged political atmosphere had become, especially here in Florida, Irma had become a much needed distraction from two sides of people with different ideas and opinions.  For after this storm, we were all one people, trying to recover from one of the worst storms in history.

My building is in the process of finally being repaired, its roof still not completed on this anniversary.  We are in the middle of rainy season, and there is another two potential hurricanes heading to Florida while the Carolina’s brace for Hurricane Florence this week.

Right now however, we have recovered for the most part, at least as far as our lives go.  There are still probably 25% of people that still have repairs that need to be done.

Sadly, the American people of Puerto Rico, were hit with a storm right after Irma, Maria.  And to this day, the island is still in horrible shape.  Over 3,000 people died in Puerto Rico as a result of Maria.  And repairs are still necessary for so many.  They need help.

I have gone through seven hurricanes in my life, this the first one going through the eye of the hurricane.  From moment one following the storm, we learned what it was like to live without power, without running water, without the ability to cook.  The list goes on.  As I said though, neighbors and friends got through this together, not divided.  No matter what our differences, we did prove that we can get along and help each other.

As the expression goes on, literally,  “you don’t know what you’ve got til it’s gone.”

 

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Talking To Children About Cancer


My children were long from even being thought of when I was diagnosed with Hodgkin’s Lymphoma.  But once I had to begin dealing with the late developing side effects from the treatments that I received for my cancer, actually forced to deal with these side effects, even though my daughters were quite young, I had a decision to make.

It was over 10 years ago, my daughters, then aged 3 and 5, had no choice.  They were now aware that their Dad, had at one time, faced cancer.  Though their immediate attention was the fact that I just had open heart surgery to repair long term damage from excessive radiation to my heart as part of my cancer treatments.

Later on in elementary school, my daughters would take up causes for “Hodgkin’s Lymphoma” because their dad had it.  It was cute.  Though they really did not have a concept of just how serious my situation was, they knew Hodgkin’s was a cancer, and I had beaten it.  And up until that time, that is all that I had told them.

As a counselor, I have often been asked, “when is the right time to tell a child?”  The truth is, there never is a right time.  No matter what the issues, a child should always be left to be a child.  There will be plenty of time for a child to act and talk like a grown-up.  Unfortunately, not when it comes to cancer, or any other serious diagnosis.  Which is why, it is so important that you remember, they are children, even if faced with the fact that their parent (or other loved one is facing such a horrible disease).  Keep the information on a level that they can understand, and without the somber tone of drama often associated with talking about cancer.

Kids will get it.  They understand a lot more than we give them credit for.  And let’s face it, times are a lot different from decades ago, when a cancer diagnosis was a definite death sentence.  With social media, survivors are available to give hope, where once there was none.

As I mentioned, my daughters are all too aware how I got to this point of survivorship in my life.  They are not aware of all the details of my health issues that I face.  Over the summer, we began the discussion that I did not know how to begin, that I had Hodgkin’s Lymphoma.

Again, keeping it at a level of understanding for young teens, they learned that it lasted a period of time of over a year and a half.  They learned that I went through chemotherapy and radiation.  And now they have learned that it was those treatments that caused the many health issues I face today.

So, in summary so far, they have learned that I have been around a long time having faced a deadly disease.  Hodgkin’s Lymphoma is considered a “rare” cancer, and thus, often hard to diagnose.  How rare?  According to the American Cancer Society, just over 5,000 new cases get diagnosed every year.  Compared to over 320,000 breast cancer diagnosis every year in women (according to breastcancer.org).  And there are over 140,000 cases of colon and rectal cancer diagnosed every year according to the ACS.

Oddly, the survival rate for Hodgkin’s is one of the higher rates, at around 86%.  One would think that a cure rate would be higher for a more prevalent cancer, but in the case of Hodgkin’s, it is not.  The unfortunate thing about the survival rate for Hodgkin’s, is that it has stayed around this number since 1988, when I was diagnosed.  There are still 14% that do not survive.  How is it possible, to be so close to a 100% curable cancer, things have not improved?  Sure, newer treatments have been discovered, and some may be safer to use, but yet, the survival rate has remained the same.

In a year and a half, I will hit my 30 year mark of survivorship.  My daughters are very aware of how far I have come now.  As one of my daughters has put it, “you are a fighter.  You always have been to me.  You don’t give up.  You will always be one of the strongest people I will ever know.”

Counting Down To 30 Years


This picture is more than 30 years old.  In fact, as I am reminded by an invitation to my school class reunion, it is actually 35 years old.

But as the clock on this page states, I am approaching 30 years cancer free of Hodkgin’s Lymphoma.  In fact, I will hit that huge milestone in exactly 18 months.

And so, as I approach this milestone, over the next year and a half, I know that I will spend a lot of time personally reflecting on the path I took from discovery, to diagnosis, to treatment, to remission.

Of course, waaaaaay back in the early 1980’s, no one ever thought of turning their cameras backwards to take a picture of themselves, today referred to as a “selfie.”  And no one as far as I knew, never really thought of photodocumenting their cancer journeys.  You have to realize, as late as the 1980’s, at least as far as I was concerned, cancer was a death sentence, no matter what type of cancer it was.  The last thing on my mind was taking a picture of me, on a path to my demise.

And so, there are no photos of me during my time dealing with Hodgkin’s Lymphoma.  Fortunately, I have a lot of my records, and those are things that I will most likely publish to demonstrate just how far we’ve come.  To my knowledge, and if I find them before that 30th year milestone, there are only 3 photos taken of me during this time.  One, a photo for a church directory.  A second, a candid photo of me resting on my couch.  And finally, my current driver’s license taken during the middle of my chemotherapy treatments.  That I know for a fact will never see the light of day, because I was so adamant when I saw the photo, I never wanted to remember that time period again.

I have experienced so many things over my survivorship, some good, some not so good, and some awful and tragic.  But the fact is, I would not have changed anything that has got me here today.

I know so many survivors today, personally who have a lengthier longevity than I do.  And it means so much for me to have someone to chase after as far as longevity.  But I also realize my role for all of my “newbie” and “younger” survivors, and I hope some day that you all can enjoy similar memories and happiness, and of course the longevity that I have for all these years.

And a quote that I have used so many times in writings I have done…

“As I continue down the road of remission, I will keep looking in my rear view mirror to make sure that you are still following me.  And if you are not on that road, hurry up!  It’s a great ride!”

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