Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Side Effects”

After Florence – Been There Done That


It is hard to fathom having to deal with such a severe weather event for as long of a period of time, even when it is scattered across many states as it progresses.  But Hurricane Florence has proven to be even more extreme than that, practically hovering over the states of North and South Carolinas for over three days already.  The media footage as well as photos posted on social media are nothing less than powerful to see.  And if you have ever gone through an initial impact of a hurricane, within the path of the eye of the hurricane or not, it is not an experience you will ever forget.

“Paul’s Heart” crosses over many ways between my world of cancer, adoption, medical rights, family, and such.  And right now, many of my fellow cancer survivors, as well as long time friends, are dealing with Florence right now, and will for some time.  But if there is one thing my fellow cancer survivors rely on me for, it is for my encouragement that I can provide based on what I have been through, and to believe, that things will get better.  More importantly, it will take time.  There is no such thing as an “overnight” cure.

By now, the preparation for the storm is long over, from evacuations to just hunkering down.  People are now in the “enduring” stage.  This is a frightening enough stage because most likely, many are without power.  And without any kind of “cell” coverage, may not know the timeline of when this storm will eventually be done.

My hopes, are that everyone who remained, are surrounded by friends and family, supporting each other.  It is during this time that we really appreciate the conveniences of home, because for us, we no longer have those conveniences.  During the storm, you rely on your resources that you gathered to get through the storm.  No cooking.  No watching TV.  No light once darkness comes.

The hardest part will be yet to come however, and that is when the storm has passed.  The city or town you have always known has been decimated.  You now truly know what it is like to start from the beginning.  The good part about this, is that you can see the daily progress being made in recovery efforts.  Patience will be tested as you wait for electricity, shelves to be stocked in grocery stores for even the most necessary items such as ice, water, and bread, but remember, perishable items in stores will have to be replaced and it will take time to restore that normalcy.  And of course, the clean up will be immense.

But safety must still remain your focus.  Water will not be safe as it is likely water treatment facilities have been compromised with bacteria laden sewage from the immense flooding.  Power lines will still be submerged.  With the ground so saturated, it will take nothing for more trees to fall with even the slightest breeze.  Of course there will be that curiosity to get out and look at the destruction.  But it is completely different once the sun has set, and there is no lighting from buildings and streets to guide you.  And forget about being able to see water on the roadway as you approach a flooded situation.

There will also be those who evacuated.  It may be days, or even weeks before you can return, or even be allowed to return.  But you need to understand, just as I warned many of my friends last year, though their homes may have been spared, or had minor damage, there was nothing here in the immediate aftermath for them.  We no longer had luxuries.  Hardly anything was open for business and anything that was able to open, was mobbed as soon as word got out.

Just as those of us got the gradual improvements being made from nothing, it is a different story for those who return some time after the storm has passed.  The shock of the damage seen can be overwhelming.

The important thing following an event like this, whether you stayed or evacuated, is to have patience with each other.  First responders will do all they can.  Local governments will do everything they possibly can to establish some sort of normalcy.  Clean up will take a long time, months, many months.  And damage, that will take a long time to repair, as my building itself is only now having its roof repaired from Irma last year.  Life will return to a sense of normal activity.  But going through a storm like this one, or others, will always leave you with an appreciation for what you have, and what is important to you.

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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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