Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Education”

Denial – Forget The Cliche’s And Jokes

As I explain the events of my diagnosis of Hodgkin’s Lymphoma, which occurred thirty years ago, I guess I should have mentioned something which might explain the importance of following these posts (in case you missed the first two, they precede this post – no others in between).  Hodgkin’s Lymphoma, while having a very high remission rate, is considered a rare form of cancer.  And it is that rarity that makes it difficult for many doctors to diagnose or even look for.  As I continue on with these posts, between my original doctor not knowing what to look for, along with a patient who never “saw the headlights of the bus about to run him over”, I am sure I am not the only patient to have experienced this struggle in my mind.

So, previously on “Paul’s Heart”, I mentioned about discovering the lump, being treated for the lump, and upon getting back to my regular routine, I was injured.

I went to that appointment that evening very confident that my friend sent me to someone who would not only understand my injury, but get me back to normal as quickly as possible.  I am not demeaning my family physician by any means.  This was strictly about getting back on the basketball court ASAP.

The doctor looked about the same age as my primary care doctor, and for the most part, everything seemed to go the same way as it would have with my doctor.  Weighed… measured… and then escorted into an exam room.  When the doctor came into the room, he shook my hand and asked me what he could do for me.

Me:  Well doc, I think I either pulled something or hopefully not, tore something in my left shoulder area.

He began to check me out, could see me wince in pain when he would lift my arm and straighten it out.  Perfect.  He would now be able to get me on the right path to getting this taken care of.

Doctor:  So, how did this happen?

Not what I was expecting.  I thought, you looked, you found, you diagnosed, let’s get moving.

Me:  I had this thing going on, and my family doctor told me to take it easy for a couple of weeks, take some medicine, and I should be fine.  I just went overboard when I went back into training, stupidly resuming with the levels and weights that I was at two weeks prior instead of adjusting.

Doctor:  What were you being treated for?

I am notorious for being super involved in my health care, and those close to me.  Admittedly I am much worse today with this attitude.  But as a patient, I want you to not only hear me, but listen to me.  My agitation level had begun to increase.

Me:  Um… I had this lump on the left side of my neck.  My doctor said it was probably a cold, gave me medicine for it, and it pretty much disappeared.  I mean, it’s still there a little bit.  But anyway, I hurt myself when I got back to the gym and was just stupid.

Doctor:  Did your doctor do any bloodwork?

Now I am getting annoyed.  I was there for a sports injury.  My lump thing was taken care of, not what I was at this appointment for.

Me:  Forget the lump doc.  I am here about my injury.

Doctor:  I just think you should get this lump checked out more thoroughly.  I would like to recommend you to someone.  I think you should get in to be seen as quickly as possible.

And on that note, I walked out.  Never to be seen or heard again.  Or so I thought.  The doctor had made the appointment for me, and upon confirmation via telephone by the referred doctor, I cancelled the appointment.  The doctor I had just seen did not even pay attention to what I was saying and why I was there.  I had a sports injury.  Enough with the fucking lump already!!!!!

I got a call the next morning at work from the doctor that I saw that prior evening.  He had heard I cancelled my appointment and was quite stern that I keep the appointment.  It was an approach from a doctor I had not experienced before, but somehow he got through to me (note – this similar approach is now used by several of my doctors to get through my stubbornness).  A new appointment was made for that evening.


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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