Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Recreation”

A Memory From 30 Years Ago I Will Not Forget

The last quarter of 1988 was one of the worst times of my life, though I really should not set the bar based on that.  30 years ago, I was facing cancer, Hodgkin’s Lymphoma.  I spent the last two months of the year, undergoing tests to determine just how bad my cancer was.  However starting 1989, was not going to be any better, because I was going to have to undergo one final diagnostic procedure, and it was going to be a big one, and recovery time was going to be an issue.  Up until this time, proudly, I missed very little time from work.  But this procedure was going to be much more extreme.  My memories of this time period are just as vivid today as they were back then.

30 years ago, actually a week ago, the Philadelphia Eagles visited the Chicago Bears in a playoff game, nicknamed “the Fog Bowl,” because of the strange weather phenomena that took over the stadium as fog engulfed and dropped into the stadium, making it nearly impossible for us to watch the game, let alone, the players to actually see what was happening on the field.  Today, 30 years later, the Philadelphia Eagles are again travelling to Chicago to play the Bears again in another playoff game, though no obscene weather is expected this afternoon.  But who knows?  No one expected that bizarre weather back then.

For the majority of my life, up until 1988, I was fairly healthy, only one minor surgery when I was six years old.  And already in 1988 I had received many new surgical scars, just to determine what stage of Hodgkin’s I was dealing with.  Now for those dealing with Hodgkin’s today, please, please appreciate the fact that you do not have to undergo this procedure, the laparotomy, to stage the cancer.  You get the PET scan.

What was especially frustrating for me, because I was more than aware of the concept of wanting to get this treated sooner than later, especially with my wedding coming up in five months, but if this was going to be the end all and determining factor of treatment options, why not just have skipped all of the other testing, and go right for this?  Of course, looking back, I can understand why now, but back then, it was just so frustrating.

For many of my readers who are long term survivors, this is deja vu for you, and for those who do not understand what exactly the laparotomy is, here you go:

There would be several biopsies performed through the 8″ incision on my abdomen.  My liver, some lymph nodes, and with Hodgkin’s being a cancer of the lymph system, the decision was made to remove my spleen.  Back then, the spleen was often deemed “unimportant”, able to live without, and to a degree, we can, I do, but it comes at a cost when it comes to fighting infections, and today, science knows this, and spleen removal is not done as often anymore because of those risks.

Up until this point, I had only one lymph node that tested positive for Hodgkin’s.  I was currently at stage 1.  Other biopsies and tests and blood work showed nothing.  Just as trying to play football in fog, getting the proper staging for me was just as difficult to do.  But just as there was a winner and a loser in that football game, my spleen was going to determine my outcome.

My spleen came back from pathology, fully involved with Hodgkin’s.  My staging changed from stage 1 to stage 3b (which meant there were symptoms with the staging.  The full diagnosis, staging, labeling, was “Hodgkin’s Disease, 3bNS”.  The NS stood for “nodular sclerosing” which is one of the types of Hodgkin’s classifying its aggressiveness, determining treatment options.

There was one thing I had to get through in the immediate moment however, THE PAIN!!!!!!  I had never had a major surgery like this before.  And now having been cut from my chest, just below my belly button, my insides torn apart to allow the biopsies, the pain was unimaginable.

As I continue through this anniversary journey, my memories are quite clear of what happened and how.

And though I am glad this scar is just that, a memory, it is still there to remind me of where I came from, and a reminder to all the new patients dealing with this diagnosis today of the progress that has been made.

And just as my body has healed from that surgery back 30 years ago, I am routing for the Eagles to be passed their memory of the Fog Bowl, and have my fingers crossed for a victory today to avenge that loss 30 years ago.


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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