Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Family and Friends”

The 30 Year Itch


I am coming up on a day that I never thought I would see.  In fact, many who have been in a similar situation would never think of seeing this day.

As my counter shows on the lead page, I am approaching my 30th year, in remission of Hodgkin’s Lymphoma.  But in order to get to that wonderful milestone, that means that there is another milestone that I get to first.

Over the course of the next sixteen months, as I often do, I will be remembering all too vividly, and not by choice, every day that I went through, because it still haunts me.  This milestone journey will be different than in the past.

My daughters were not around during my battle against Hodgkin’s Lymphoma.  They will proudly state that I am a long term cancer survivor, though they have no idea what I went through.  As they are older now, I have decided that it is this milestone path, they will now be told how I, and how they came to be my daughters.

For some of you reading future posts, it may be a sad reminder for you, and I apologize.  For some of you, too new to understand the progress made in diagnosis and treatment in thirty years, it may help you to keep things in perspective if you find yourself struggling emotionally.

But it started thirty years ago with an itch.  You cannot see it in this photo, taken just now, but there was a huge lymph node just under my chain.  An unbearable and instant itch drew my attention to a large lump in my neck.  At a young age of twenty-two, I was not thinking anything more than, I need to contact my family doctor.

I am a virtual stranger to my doctor as I really on had visits once a year for a seasonal allergy shot.  But this lump was something that was clearly not normal.  So I made a call to my doctor, who happened to only be the second primary care doctor in my life (my first practiced well into his 80’s).

My doctor felt it was some sort of infection, perhaps just a little more than a cold.  He gave me some anti-inflammatory medicine and told me to just take it easy for a couple of weeks.  A simple enough order from the doctor.

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…

 

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