Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Side Effects”

That Did Not Last Long


* The following is a continuation of the 30th anniversary of my journey of the diagnosis of my Hodgkin’s Lymphoma.

I admit that I can be stubborn.  And it is no exception when I get a doctor’s order.  But as all three of my primary care doctors that I have ever had, two no longer practicing (one actually would be over 100 years old now), I do not see a doctor unless I pretty much have a limb falling off.  But at this point, if my doctor prescribed something for me, to help me, I never questioned it.  If I was at the doctor, I had a problem, it needed to be dealt with.

I was not happy with the doctor’s orders of rest for two weeks.  But with the large lump in my neck, I was no longer comfortable.  Take the anti-inflammatory for two weeks, rest, and I will be good to go.  No weightlifting, and worse, no playing basketball.  We had just started a city league basketball team at work which I was totally psyched to be playing on, now sidelined for two weeks.  But my doctor assured me the medicine would work.  I had some sort of cold or infection.  If the lump would have been in different location, he admitted his plan would have been different but was confident in his plan and prognosis.

And the medicine did work.  The lump went down nearly 80% and as the two week “rest period” neared its end, I could not wait to get back to the gym, get myself back into condition to hit the court again.

Another unfortunate quirk about myself, is that I do not have a dimmer switch.  I go full tilt with everything I do.  I was so frustrated with not being able to train for two weeks, instead of just easing back into the training, I went right back at the weights and times that I stopped at because I did not want the two week rest to have any impact on me.  I felt up to it.  And it was what I wanted to do.

And of course, instead of just easing back, going as hard as the day I stopped, even if only two weeks, I developed a pain in my left arm pit whenever I extended my left arm straight.  I had hurt myself.

I spoke to my friend and co-worker, Stephen (disclaimer, this photo is not of either of us) and explained to him my frustrations about now being hurt and not able to play that night as I had hoped.  He understood, and suggested that I see his doctor as Stephen had seen his doctor for injuries and felt confident that his doctor could help me bounce back quick.  Even though I had my own doctor, my sights were set on getting better enough to get back on the court.  I made the call, and got in to see his doctor that evening.

And that is when things got confusing, and my stubbornness came out.

 

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.

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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