Paul's Heart

Life As A Dad, And A Survivor

A Milestone I Almost Never Got To See

“Mr. Edelman, I usually don’t say something like this.  But I am certain that you have a blockage.  But the good news is, I want you to check in next door to the cath lab right now.  I will get you set up for a couple of stints first thing in the morning, and you will be good to go in a week.”

“Okay doc, but, I have plans on Saturday.  I will come back on Monday morning.  We can do it then.”

“Mr. Edelman, perhaps you didn’t hear me.  This needs to be done, right away.”

My cardiologist to me, April 16, 2008

 

“Mr. Edelman, you are one of the luckiest men on this planet.  I hope you can understand that.  It was not a question of if you were going to die… but when.”

My cardiologist to me, April 22, 2008

 

On April 16th, I walked into a cardiologist’s office for a nuclear stress test, ordered by my family physician after I had complained about a chest tightness that I had been experiencing for over four months (that I could at least recall).  I returned to the hospital the following day to have a catheterization only to wake up from the anesthesia to be told the situation was much worse than even he had anticipated.

These are the actual pictures of my “death”.  The worst of three blockages was 80-90%.

I was diagnosed with a blockage of the left anterior descending artery, a.k.a. a “widowmaker.”  And they call it that for a reason.  Because of the extreme measures that need to be taken, you do not easily survive what will likely be a fatal heart attack.  And the fact that I had this “tightness” symptom for so long, which happened several times a day, and simply just ignored it, I know I was truly lucky.

On the morning of April 18, 2008, the nurse would come into my room around 3am, and roll me down to the chapel of the hospital.  It was a request that I had made before I was to be taken to surgery.  At 4am, an orderly came in to prep me, and at 5am I was taken to the operating room.

There I was, laying on the table, naked, covered only by a thin sheet, my arms straightened out away from my body.  Looking around, there were more than a dozen people in the room, tons of equipment, and a lot of tools and supplies.  It was surreal to think all of this was necessary to save my life.

“He is so young,” I heard one of the nurses say.  I was young, 42 years old, and by vitals and stats, there was no real understanding why I should be on that table.  But I was.  The anesthesiologist began talking to me, about what he was going to do.  I did not hear him, because all I could think about was the fact that I could die.  I had two young daughters at home that I never even got to hug and kiss one more time.  That was the last thing I remember.  I was out.

I woke up many hours later, in the ICU, alone.  I had two nurses monitoring and observing me, Jackie and Joe.  They did their best to keep me calm, scared from both the fear of the unknown of what had actually been done to me, and dealing with the pain of having my chest cracked open.  I was only able to communicate with them with hand gestures for either “okay” or waving a finger for “yes” or “no,” or even spelling words with my finger on my bed.

Over the next 5 days, I remained in the hospital, pushing my recovery while at the same time, dealing with an infection I had developed.  On the final day, I was released and went home.

The heart pillow behind my daughter’s head was given to me as a tool to help me hold on to, to press against my chest in the event of a cough or sneeze.  But clearly my daughters were more than happy to be closest to the most important part of me, my heart, and laying on the pillow was the best, and safest way for me, for them to do it.

It was discovered that I had this condition as a result of late developing side effects from the treatments I went through for Hodgkin’s Lymphoma nearly 18 years earlier.  I was exposed to 4 times the lifetime maximum of ionized radiation in a 30 day period, treated with chemotherapy drugs known for their toxicity (mustragen – used by dictators Sadaam Hussein to kill his own citizens, adriamyacin – a.k.a. the “red devil”, destroys the heart muscle, and bleomyacin – known for doing severe damage to the lung).  Even the diagnostic procedure of having my spleen removed and tested, has left me immune-compromised – harder for me to fight and protect myself from nearly every illness.  There is more, but you get the hint, I traded one bad situation for another.

It was the radiation that created this particular situation.  Most of us who have been exposed to this amount, and have this condition, refer to radiation as “the gift that keeps on giving.”  There is a term in the industrial world, called “half life”.  Simply put, it is described as the length of time it takes for your body to get rid of the radiation exposure.  For instance, a dental xray, the radiation does not last very long.  But if you ask a radiologist the half life of 4000 rads of ionized radiation, and their facial expression will turn to one of shock.  This will stay with me, the rest of my life.  Look at it this way, imagine your skin after initial sun burning.  It continues to get red even after you are out of the sun.  Well, the same thing with the radiation exposure of my treatments.

But as serious as this all sounds, I am still here, 10 years later.  Although current circumstances have left me unable to follow up with my doctors due to the lack of health insurance, something I hope our government some day realizes the need for, and institutes medicare for all, I had been followed up by doctors as Memorial Sloan Kettering Cancer Center as a long term cancer survivor with more than a dozen diagnosis.

This had been my second (and not last) dance with death, though this one cut it real close.  I have two family members besides my daughters, along with many friends who encourage me every day.  They understand it is not so simple just to “get over it” and move on.  They understand my current lifestyle is not about being lazy.  They understand and appreciate that they have not had to go through what I, and many other cancer survivors have had to go through.

My doctor at MSKCC for years had told me this, “I cannot reverse these things that are happening to you.  They are progressive.  But I can slow them down.  My goal is that you get to see your daughters graduate high school, get married, be a grandfather.”  Those words of hope came with a stern warning.  I needed to change my lifestyle and stop being so hard on myself physically.  Living and working with the side effects I had developed at the pace and intensity, I was actually escalating the process.  In 2012 and 2013, I ended up in the emergency room 5 times, two of those critical, and one was an undiagnosable heart episode.  So, after four years of ignoring the advice of my doctors, and the compiling of other medical events, my body is now getting the opportunity it desperately needed, and for good reason.

Yes, I look healthy on the outside.  That is what I want you to see.  Most cannot handle hearing even 5% of what I deal with.  And then there are those who choose to ignore it completely, and even go to another extreme of claiming this is all a fabrication.  Shit, there are even those who were witness to my issues who claim they are “nothing really”.

Medicine is only now learning that cancer survivors live longer than 5 years.  And because of that, since long term studies were never really explored, they are dealing with patients like me, having just recognized my 28th year in remission.  I, and others, are actually teaching the doctors about our backgrounds and needs.  And that is because I have met other survivors, and we all share this information with each other because we know, this in many cases, is the only way we will survive.

When I was diagnosed, and I have my patient file, there are only two possible side effects listed, secondary cancer and pericarditis.  But as Maxwell Smart says, “missed it by that much.”  Every thing I deal with is anything but those two issues.  And if you look in the books, they state, only a slight chance of developing these issues.  I call bullshit.

Over twenty years ago, I organized two conferences with over 25 Hodgkin’s survivors.  This year, two of those survivors became the last two to end up dealing with late effects.  That’s right, 100%!  I hardly call that slight.  Those two by the way, were also “widowmaker” survivors.

So, for those that continue to offer support, hope, and encouragement, thank you so much.  Although I would prefer not to have to deal with all these maladies, all I know is how to fight, no matter the circumstance.  I will not give up.  But I cannot just “get over it.”  That would be the worst thing I could do.  That denial almost cost me my life 10 years ago.

And to those who feel the need to judge what I can or cannot do, what I should or should not do?  Really, are you jealous of survivors like me with these issues?  Or just plain ignorant?  I am guessing, both.  Make no mistake, I did not ask for this turn in my life, and that is not to be mistaken for my gratitude of surviving cancer.  But it also does not mean that I deserve what I am dealing with because I made the decision for the cure.

One thing is certain.  I have another huge milestone coming up in less than two years… 30 years cancer free.  Those who are over 40 years old, do you remember what it was like to hear about someone diagnosed with cancer?  They died, or at least, that is all we were ever told.  Today, there are over 12 million survivors, and yes, many of us deal with late effects.  But one thing is certain, we all fight to live.

(the full story of my heart surgery can be found on the page “CABG – Not Just A Green Leafy Vegetable)

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3 thoughts on “A Milestone I Almost Never Got To See

  1. Lynn Boddy on said:

    I am very happy you survived, Paul. I enjoy reading your story. You also teach us. If I were having chest pain as you describe, I now know I’ll take a trip to the ER. I tend to ignore things, as well. Very good read. Thanks.

  2. Sherril Horvitz on said:

    Paul I have followed you for years. Thus post was a wake up kick in the pants for me. I am in my 18 th year of remission from HL the first time. I had all the usual drugs and radiation. Ately I have had more chest pressure than Inormal from scar tissue and put off checking it- until once again I read your history. That was the kick in the pants I needed. Since I am with all new doctors and a PCP I don’t think of too highly I am going to keep being a squeeky wheel. Thanks for the reminder.

    • Please Sherri, I cannot stress enough, were it not for my primary care doctor, I would have been too stubborn on my on to pursue, and you would never have read this story.

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