Paul's Heart

Life As A Dad, And A Survivor

Archive for the tag “cardiac”


Bravery is defined in Merriam-Webster as courage.

I decided to look this up today.  A co-worker was having a conversation with me, coming to find out everything that I had been going through in just the last several weeks.  And his comment to me was, “You’re really brave.”  And I looked at him like I was almost hoping for a hint of sarcasm or even some foolery.  But for once, he meant it.  And then he repeated it, “You are brave.”

The first time I heard it, I was uneasy.  I was hoping the conversation would end, but when he said it the second time, I knew that I had to deal with it.

In my life, I am hard pressed to find even one instance in my life where I could be defined as brave.  I have never fought in any armed service.  I have never broke up an attempted bank robbery.

But when people find out that I have beaten cancer, had open heart surgery, two cases of pneumonia (one with sepsis and the other double pneumonia), kidney stones, all kinds of late issues from my treatments, I get, “You are brave.”

When I think of “bravery”, I think of men and women who run into a burning building, police officers who put themselves in harm’s way every day, an airline pilot flying a human missile loaded with hundreds of lives, a teacher shielding her students from a lunatic’s bullets.

No, I am not brave at all.  I simply did what I had to do.  I have two beautiful daughters who I know love me so much, it would devastate them to lose me.  I have no choice but endure if my body and mind are capable of doing so.  In the second half of my life, I have met so many people who have faced relapses of their cancer, multiple cancers, those who struggle with their survivorship from the treatments that saved their lives, and sadly, those who lost their battles.

I have always said that I would not go through anymore treatments if my Hodgkin’s Disease came back, that is, until my daughters came along.  One of my dearest friends has faced nearly 50 surgeries all having to do with her surviving her cancer treatments, this along with a battle with a secondary cancer.  With so many close calls, not just near death, or in some cases, flat lines, she continues to trudge on to this day, not only a proud mother, but the happiest grandmother, something that she never thought she would ever see.

I do not know how she would react if I told her that she was brave.  I know on occasions when I have talked with her on the telephone, I have told her that I was speechless for words to how I felt with her continued struggles and survival.  It would be easy for her to give up I think.  She has been through so much.  But the fact is, she has not given up.  It is with her example that I can never make that decision either.

And so, I am watched periodically, whether month to month, quarterly, or annually.  There are things that have been identified and can be dealt with.  I go to my appointments not afraid, but confident in my caregivers that things will be dealt with sooner than later.  That is not bravery, that is trust.  As for the all-of-a-sudden stuff like the pneumonias, the cardiac issue, some kidney activity… a little luck does not hurt either.

My First Visit To Sloan Kettering Memorial Cancer Center

March 3, 1995 was a day that I had waited for five years to occur.  I was going to use the word “cured” with confidence that my Hodgkin’s Disease would be gone forever.  I had learned so much over those five years.  I had to watch if I got a high fever, keep an eye out for lumps and discolorations, all common sense stuff that I could do on my own without having to pay a co-pay for.  And in spite of statistics being based on five year survival rates, there was no evidence that I was going to comply with those odds.  Things were on my side for a long life.

I recently wrote a post on “big hospital vs. little hospital” so I won’t repeat my thoughts on that at this time.  As far as I was concerned, it was life as usual.  I would see my family doctor, whose practice is an hour away from my home, once a year, for a seasonal allergy shot.  I never thought about hospitalization, because prior to my Hodgkin’s Disease, I did not need to worry about hospitals.

But then I got the rude awakening when I dared to complain about a symtpom that I had ignored for nearly four months.  I was told that I needed open heart surgery at age 42, and it was due to radiation damage from my treatments eighteen years earlier.  I was at a hospital that I was more than familiar with for many reasons, of which is another post.  But the Lehigh Valley Hospital was one of the biggest networks in the area, so I felt in good hands.

One of the first things that I should have done when I got out of the hospital was head to Atlantic City or Las Vegas.  I was one of the luckiest people on the planet because I not only pre-empted my pending fatal heart attack, but I would come to find out, after getting my surgical report, that my surgery was based on the care for the average heart patient, not for someone exposed to four times the lifetime exposure of radiation and chemotheraputic drugs such as Bleomyacin,  Adriamyacin and other anthracycline drugs.  Decisions that were made then, could have had much different results.  Neither my doctors, nurses, or myself knew what was at risk.

In the past, I had been involved with an on-line support group for Long Term Survivors of cancer.  Up until now, I had never felt like I belonged there, because everyone that I had met on this list, were dealing with ailments blamed on their cancer treatments, cardiac, pulmonary, liver, secondary cancers, etc..  At worst, any issues that I had been dealing with from my cancer treatments were some hair that had not grown back, infertility issues, and thyroid issues.  Up until now.  So the first thing I did from the hospital was not visit a casino or play the lottery, I went back to those that I knew, would know best.

I am not qualified to define what exactly a “Long Term Cancer Survivor” is, or determine what criteria is to be met.  There is no committee collecting membership dues.  There is no ruler.  There are moderators, who are survivors themselves facing severe health issues related to their treatments, and they have the unpopular challenge of protecting each participant from common email attacks or personality clashes.  The fact is, we have enough to deal with.  And so it began, the journey to find doctors who specialize in long term cancer survivors.

Unfortunately, long term side effects are not widely studied by primary care physicians, specialists, and other caregivers.  Only in recent years does the discipline even have a recognizable heartbeat with an occasional article in the New England Journal or other publication.  Of course, the researchers and pharmacutical companies did not spend much time or money on late side effects, because we were not expected to survive a lifetime.  But we do.

Through the Childrens Oncology Group, I learned that there were two facilities that were within a decent day’s road trip, in Philadelphia at the University Of Pennsylvania and in Manhattan at Sloan Kettering Memorial Cancer Center.  From the internet support group, I knew a lot more about the program at MSKCC, but knew that both hospitals were some of the best in the country.

Scared, and running out of hope, I contacted the first name that I recognized from MSKCC, Dr. O.  In him, I struck gold.  He originally practiced in Texas.  For decades, this doctor studied Hodgkin’s Disease and survivorship of the late effects from treatments.  To get an appointment with him was the equivalent of winning the lottery.  I know of some other patients that see him, and knew that I was being cared for by the best, the leader, the example for survival care.  Through his leadership and mentorship, there are now many survivor clinics accross the United States, and the knowledge is now spreading across the world.  Survivors of cancer were not only being recognized, being represented, but being cared for.

Today, there are protocols for new patients when they reach the end of their treatments.  The medicines and procedures are less invasive, less toxic, and result in less severe side effects, but to be honest, the risks do still exist.  That is why there is the Relay For Life and Stand Up 2 Cancer.  Better ways of diagnosing and treating cancer need to, and can still be found.  With the follow-up protocol, the chances for picking up a late developing side effect, or secondary cancer, can now be found earlier and have the better success to survive, as if surviving cancer was not enough of a challenge.

My first trip to Manahattan since high school was overwhelming enough let alone to walk into one of the greatest medical facilities in the world.  I was greeted by Nick, also known as the “Ambassador” who gave me the instructions I needed to locate Dr. O’s office.  It was there that I met Beth, a nurse practitioner who had spent a long time with the cancer survivor program.  We spent close to an hour going over my health history.  She offered me compassion, empathy, and care as it was obvious, an entire new world was collapsing all around me.  I thought I was only going to be talking about cardiac issues.  But there was so much more.

Eventually, Dr. O came in and spent another hour with me, this time explaining all the things that had been discovered about cancer survivors like me, what had been done to me, and what would need to be done to care for me.  As he put it, “I want to make sure that your grandchildren get to know the great man you are and what you have been through.”  Okay, I was not really thinking about grandparenthood at 42, but I like his long term thinking.  Together we came up with a plan including retrieving my old records to find out exactly what I had been exposed to, and compare what they now know as far as what to look for in late developing side effects.  These are all things that are done now with current patients.

Nearly five years later, comparisons can now be made for me that show the progression of any of the side effects as there were no basline studies done on me 23 years ago.  I have a complete understanding of what my survival has meant to me, but also what it means to others, my family, my friends, and other survivors.  There are millions of us who have survived cancer.  Not all surivivors will develope side effects.  Not all survivors will know if what they may be dealing with may actually be attributed to their treatments.  That could be a good thing, take it from me.  It is a Pandora’s Box to know that more issues can occur, will occur, to know the increased risks at being proactive or letting things take their course.

This past week, it had been confirmed a symptom that I complained about two years ago, had returned, and why.  It is also suspected of causing a serious bout of “aspiration pneumonia” two months ago.  but this is just the beginning stages as further investigation will take place later this week to get an overall view from beginning to end, and then a new treatment plan will be determined as I continue to age towards grandparenthood.  Thankfully, because of Dr. O, and more than a dozen other caregivers that he has me deal with, I am going to get that chance.

Working While Going Through Treatments Or Not Recovered Enough

It is amazing.  From the moment I was diagnosed with my cancer, I could feel the resentment from my co-workers.  Think about it.  When we hear of someone having cancer we think, “aw, poor guy” or “why her” and most likely some other stereotypical responses.  But for some reason, from co-workers, unless there has been some sort of life-time bond,  will most likely feel resentment.  My co-workers in 1988 were not different.  I did my best to minimize my time lost from work for diagnostics and treatments.  In fact, in nine months of chemo, I missed a total of eighteen hours of work.  That’s right.  I missed the last hour of work, two days a month.  And my co-workers were jealous of me for it.

If I need to be fair, because I really did not talk about what I was going through.  I did not want anyone to know what it felt like that I was going through.  When I had good days, no one would know any different, and if it was a bad day, I did all I could to hide it.  I did not want to be any more of a burden to them, than what I was.  But that was not good enough.  The jealous attacks were relentless and would eventually cost me any shot of promotability, because I “could not get along with my co-workers.”

As I underwent all of my treatments, I risked exposing myself to everything that these people brought into work with my immune system being run down from the chemotherapy.  Simple colds would carry extra danger to me the least of which delaying my treatments if I got sick.  The stress from the fractured relationships also were difficult to tolerate.  Given the choice, I do not think I would work while undergoing treatments again.  It was not worth it to me, and it made no difference to them if I was there or not.

Over the next many years, I had been fortunate not to have any other major events to require any kind of lengthy absence.

But nearly twenty years later, that same ugly behavior would show up.  After the initial shock that I had emergency heart surgery, a little over a week later, co-workers had been babbling about me at work.  It seems that I was spotted walking in public.  Imagine the gaul that I had, walking around my block, getting the exercise that I was ordered to do.  Forget the fact that I had to stop at the end of each street as I went around the block.  Word got back to work that I looked totally okay and healthy.  I was spotted in the drive-thru of a Dunkin Donuts by a supervisor after dropping my wife off at work and kids off at school.  It did not matter that we only had one car at the time, and I had follow-up doctor appointments and cardiac rehab to get to, but I was reported to be out joyriding. 

When I returned back to work following the heart surgery, which I had been threatened by my employer with termination, because even though the doctor wanted me out six months, my employer decided I could go back in three, I convinced my doctor to release me.  And she did so, with some stipulations.  With the ADA (Americans With Disability Act) to support me, there would be some restrictions on what I would be able to do, which because of the size of my employer, they would have to accomodate.  Also, because we do not park on plant site, my doctor had given me a temporary handicap placard for parking.  I was still getting short of breath, and with the warmer more humid weather coming, this was going to be an issue.  The first day back at work, someone complained to management that I had been parking in the handicap stall, and if I was not better, then what was I doing back at work.  Now realize, this is the same person complaining about me being out of work.

Four years later, I am still dodging these horrible jabs from my co-workers.  I have had a couple more issues pop up, and then of course there are the many doctor appointments that I have.  But hey, I am not on social security or unemployment right?  That should be an admirable thing right?  HELL NO!  Each day I go into work, risking my health being exposed to who knows what just because someone will not call in sick.  And really, I have had no real absentee issues except for a couple of bouts with pneumonia and sepsis, other than my appointments.  I still am a fairly reliable employee to show up for work.

But my co-workers know something is wrong with me.  I do not discuss anything at work anymore.  But they sense it.  And for that reason, I appear to be a threat to them.  I have wathced them chase several people from my department and into retirement.  One co-worker who had MS was forced out because he could no longer handle the harrassment and sabotage from my co-workers.  I am a little more thick-headed, but I definitely allow my stress and blood pressure go to heights that no one should endure, especiallyl when they are on medication for blood pressure and have cardiac issues.

Would I work through treatments or rush back to work, just to make my co-workers happy (which I know would not)?  Or would I be better off staying at home?  Taking the time to heal and recover?  I would have to sacrifice everything I have worked for, but my job is coming at the risk of my daughters losing their dad, and my wife her husband.  My last bout with pneumonia, was double pneumonia.  And more than a month later, I am still dealing with its effects.  But tomorrow will be my eighth straight day working, with another five to go before the possibility of a day off.  And for what?  To shut my co-workers up?

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