Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Family and Friends”

If You Would Have Known


If there is one thing that my daughters know about me, they can always count on me.  My daughters know that I will always encourage them.  Both of my daughters know that I believe in them.  They also know that they can come to me when they need help or advice.

I want to be careful here so that I do not upset other parents.  It is a parent’s choice the decisions that they make with their child as far as extracurricular activities and how many they participate in.  My approach was two-pronged.  First, I wanted them to find something that they liked to do.  Second, they commit to it.

If there is one lesson in life that I remember growing up, it was learning the importance of an education, and not just relying on the dreams of being a pro-football player or movie star, or someone else earning popularity or riches.  The odds would be against me, nothing would just fall into my lap.  And if I worked and studied hard, I would find out that my life would be pretty good even if I did not make that superstardom.

My oldest daughter had an interesting, yet I am sure not a unique approach, not wanting to practice, just do it.  From the first dance class, she showed quite a bit of talent.  And when it came to singing in the church choir, she shined.  But as I said, when it came to practice, it is not that she did not feel that she want to practice, she was bored with the level of performance that was expected, as when the participation actually meant something.  It was not unheard of during karate classes, for the instructor to ask me, “where did she learn to do that?”  To which I replied, “I thought you taught her to do that,” referring to a higher level of move than what she should have been able to do.

My younger daughter took practicing differently.  She is a bit of a social butterfly, so she enjoyed the extra time around all of the other children.  And like her older sister, she did well.  She would learn many techniques, and be promoted in belt rankings several times.  But for whatever reason, she had just one issue.  Competition.

The odd thing was, during practices and even belt promotions, all of the same participants were there.  The same parents attended each event and practice, and my daughter knew them all.  But for whatever reason, she would totally break down, when it would come to a competition, where she needed to perform individually.  I never expected to see that from someone who had only shown confidence, and fun.  But it was something that I learned about my daughter.  And it would be a lesson that would make a difference to her later on in life.

Neither of my children are attention hounds, but during school, there will be times that you are called upon in class.  Whether it will be to reach a page from a book, or answer a math problem, a student will have to speak up in front of others.  And on a minor level of participation like this, is one thing.  I would find out during her foreign language course that she takes, that her experiences in karate helped her to overcome.

In order to be graded in a foreign language, you not only have to be able to read it and write it, but you must also speak it.  And unlike reading and writing, speaking must be done individually.  And that would mean that my daughter would be in a similar “arena” as she was during competitions in karate.  Only now, able to overcome the pressure that would torment her.

I am proud of all of the efforts that my daughters put in to what they do.  And now that they are older, they now talk of their future, and their course selections will mirror their needs to achieve those goals.  Neither back down from any challenge, and if they feel they are not challenged enough, the challenge themselves.  And at the end of the day, they know that I am proud of them, believe in them, and love them.

I Am Glad I Did, Or Glad I Did Not


This year marked my 35th year high school graduation.  To be honest, I never thought I would be around to say that.  To be honest, I never thought I would see it.  Sadly, I will not be able to attend the reunion for several reasons, but not because of what you are about to read.

As I said, I am not travelling back home for the reunion of my graduating class, but that has not stopped me from reading and participating in the chatter as my former classmates prepare for what will be a memorable and fun gathering, and for those fortunate enough, a great weekend.

A classmate who admittedly though I recall, yet never knew, provided me with something I often need here, to get me to write when I have writer’s block, a prompt.  And she has prompted quite a few entertaining conversations.  But this one really struck me.  She wrote about an event in her life, that could have ended very tragically, had she not done things differently.  She was also thankful for those who had chosen their paths, because they made a difference in saving her life.  So with that, here is my post.

I am glad I…

went for six second opinions when I was told I had cancer, Hodgkin’s Lymphoma.  Talk about major denial.  I was convinced I had a sports injury and only until I saw that 7th doctor, was I convinced that I needed to deal with cancer, head on.  Why was I glad?  Because up until that moment, I was a healthy twenty-two year old, who refused to accept and believe what I was faced with.  I would have died.

I am glad I did not…

go through with more radiation treatments.  As far back as the mid 90’s, very little was known by medicine as to the true damage done by radiation therapy, or should I say, the extreme amount of radiation therapy patients were exposed to.  Even today, it is not taken completely seriously by everyone except for those who work in radiation-related fields, or long term survivors like myself.

Originally I was treated with 4000 grays of ionized radiation, followed by chemo therapy.  By the 4th cycle, I was pronounced in remission, but necessary to go through with the full 6 cycles.  After, I was to choose between an extra 2 cycles of chemo, or another round of radiation as preventative therapy.  I figured that as I was already going through chemo, what the hell was 2 more months of it?  Little did I know what would happen to me, or rather, not happen to me because of that decision.

I am glad I…

reached out to my primary doctor in April of 2008 about a nagging “chest tightness” that  I had been experiencing four months already.  And I am really glad she made the decision and call herself, to order a nuclear stress test, not something done on a health 42 year old.  Had she left it up to me to make the appointment, instead of being seen just days later, I probably would have been scheduled weeks later.  And I most likely would be dead.

I am glad I did not…

walk out of the cardiologist office, never to return.  He had given me news that I was not prepared for, and honestly, made as much sense as telling me I had cancer.  It could not be.  Having that appointment scheduled as soon as it was, got me put on a table to undergo emergency life saving open heart surgery for a “widow maker” bypass.  And the name is not a joke.  You die when you have this type of blockage.  As my cardiologist told me, I am the “luckiest man alive to have prevented his fatal heart attack from happening, not if, but when.” (see my page “CABG – Not Just A Green Leafy Vegetable.”

It was discovered that the radiation therapy that I was exposed to, was the cause of this damage to the main artery, blocking it 90%.  As I mentioned earlier, I opted for more chemo instead of radiation.  If you mention the amount of radiation I was exposed to, like many of my fellow survivors, to radiation techs, nuclear power plant operators, or anyone with knowledge, they will tell you this amount of exposure is horrific.  And yet, I know people who were exposed to more, even double what I was exposed to.  I can only imagine what I would be dealing with had I opted for more radiation as my health issues from both my chemo and radiation treatments are bad enough.

I am glad I…

reached out for support, not just from doctors who at the time did not know about us long term survivors and all the complications we face, but from other survivors.  It is these other survivors, who steered myself, and others to get the help we need.  It was this support that took me to Memorial Sloan Kettering Cancer Center where I met the doctor that would make a promise to me, to help me manage (these issues cannot be reversed) all the complications that I faced today.  Today, the things I have learned have been passed on to my doctor who now has more knowledge to help me survive hopefully for decades to come.

I am glad I did not…

walk away from what I faced, 30 years ago next month.  Not only is it my 35th year graduating from high school, but I am approaching 30 years since my diagnosis.

I am glad I…

made the decisions that I did during my life as a cancer survivor.  It has made me the fighter that I am today.  I had to.  I faced three more life threatening events related to my treatments since my cancer days, emotionally and physically, my decisions, intuition, and determination I believe is why I am still here today.  The hard part for me though, is even as I can express my appreciation for surviving this long, my heart aches for everyone that I have met throughout my life, fellow cancer patients and survivors who have not been as fortunate.  It is a guilt that I carry every day.  Why them?  Why not me?  What was so different?  Why could not they be given the chance I was?

Ultimately though, and thank you to my high school classmate,

I am glad I…

got this chance…

 

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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