Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Bullying”

When Race Hits Home

A strange way to start a post, but here it goes.  I grew up as a child in a “white only” (as far as I knew) neighborhood, attended high school as a minority, and clearly I have two daughters who are Asian.  I did not grow up paying attention to anyone’s appearance because it may have been a different color than my skin.  I have moments that I am not “PC” (politically correct), but at the same point, do not get offended when it gets pointed out that I may have said something that was misinterpreted.  I do not and have not used racial slurs, well because that is not how I was raised.  Growing up in the 70’s and 80’s, I watched the Jeffersons, All In The Family, Blazing Saddles, enjoyed Richard Pryor.  But I also detested any acts of racism.

Throughout the 90’s, and in charge of a church youth group in a small urban area, where racism was more prevalent, in fact very near KKK populated areas, I spent a lot of time teaching the youth to go against the urge to follow their grandparents (and in some cases their parents) when it came to thoughts against anyone who was not white.  It has been a slow process to dealing with racism, but I had always hoped that we would keep moving forward with eliminating it.

This post is not about racism itself, or the history of it, but rather an unfortunate phenomenon that we are currently dealing with today.  Most of us were all outraged by what happened in Charlottesville a couple of years ago, and our response was to condemn, yet again, all acts of hatred against races.  But there seems to be a problem.  How do we condemn one act or philosophy, that then seemingly affects something that we held personally as something of our past?  How do we expect racism to be dealt with, when we ridicule moments of history that we stumble across, bringing down someone or something that we once held in high regard?  How can we be expected to condemn one thing and forgive another, and really, who is to decide?

The answers are not simple at all.  In fact, in recent years, dealing with racism has gotten more complicated.  And admittedly over the last two years, a certain population has felt emboldened to step into the spotlight to reignite the fears, anger, and hurt, that over the decades we had fought to correct.  Right now, whether on Facebook or in person, we are now having conversations with our friends over statues and monuments, movies, music, that in retrospect, were really racist in content.  But in our earlier years, it was not a big issue, whether because it did not affect us, or we just did not pay attention.

But part of dealing with racism, just as I did with the youth group, we spent a lot of time teaching children racism was wrong.  Well, those children are now growing up, with the values we raised in them, and because they have technology that we did not have growing up, they have tools to fight racism that we did not.  The problem with that, the racism was not as obvious to some of us, as it clearly is to the current generation.

And it is not fair to refer to this generation as “snowflakes” as is common.  In fact, those that complain about this generation are “snowflakes” themselves for complaining about what they created.  Because we chose to fight racism, we created a generation who is ready to take it to the next level.  And really, if we are ever continue to move forward, dialogue now needs continue.  The generation needs to understand how we grew up and what we were exposed to, just as the American history that they have learned.

Like I said, music, movies, television, and other things in our life, we hold certain examples sacred.  And we are devastated and hurt, when one of our favorites falls, no matter the transgression.  For the purposes of this post, I am going to use a current example.

Kate Smith.  An icon if you are a Philadelphia Flyers hockey fan.  Known for her stunning rendition of “God Bless America” that she sang prior to a Flyers championship game, which quickly grew to a tradition played before all Flyers home playoff games, even long after her passing.

The performance had nothing to do with patriotism, though clearly the song was very patriotic.  But whether live or video, Kate fired up the fans, no matter what the odds were for or against the Flyers.  Following the terrorist attacks of September 11, 2001, the Yankees baseball stadium would also adopt Kate Smith’s “God Bless America”, though clearly meant to bring us all together.  And that really was where this had really ended.  On a side note, I am family with a personal family connection to Kate Smith, but since I was a child, I do not recall the details, well, because I was stupid and did not care.

But again, for the last two decades, we have been raising our children to fight against racism.  And no matter what some may do to quash history because they feel it makes our country look bad because of the things our ancestors did, this current generation is intent on wiping out racism.  And I can appreciate what they are doing.  Because when you think about, my generation has failed.  And we are proving that by the way we are not only complaining about “discoveries”, but how we are doing it.  And at this point, arguments are now occurring between us, regardless of color, but more geared towards protecting something we once held dear to us.

Kate Smith was a racist.  That is a fact that has been discovered.  Was she always a racist?  We do not know.  But at least for a moment in her life and career, she wrote and sang at least one very offensive  song that nearly all of us were unaware of ever existed.  And honestly, I do have to ask, what was actually put into Google search to find out about Kate Smith.  I am fairly certain that today’s youth really have no idea who she was.  But that does not take away the transgression what Kate Smith did.  To counter that, of course, all of the good things that she did for our country and for our military.  And she did.  And that should not be forgotten.  But neither should the period of racism she promoted.

So the question now becomes, “how long should it be held against someone for something they did long ago?  And given the benefit of the doubt, changed their thinking?  I am betting that there is not one family member of Kate Smith’s family that believes she was a racist.  They only know a loving mother and grandmother.  And here is my argument for that.

This is a picture of my maternal grandmother, the most influencial person in my life.  As I mentioned, I grew up in an area that just happened not to have any African Americans, though we did have one kid that was from India.  In any case, she was the most caring and loving person anyone could know.  All of the kids in the neighborhood looked to her as their “honorary” grandmother.  She would be the first person with cancer to survive that I would ever know, and give me the courage to fight my cancer.

But in recent years, it was revealed to me, that she had her tendencies to be racist.  I was shocked, and admittedly, clearly did not want the conversation to go any further.  I have to face it, given where I lived, I really never got to see any sign.  She never used any slurs.  And like I said, all I knew was her to be a loving person.  To this day, I want to remain in denial.  I only knew her one way.

So, I kind of get to a degree the outrage being felt right now after discovering what cannot be denied about someone that was held in such high regard.  But it does not change what she did.  And if we are ever going to reverse the trend of increased racial hatred, we have no choice but to listen to those that we raised to be tolerant.  They are the ones paying attention to the ones being hurt now, by the new racist attacks, whether verbal or physical.

It is disappointing sure, but the pain that it causes is worse.  And the fact that it is now pitting even friends against each other, one side fighting for something they hold close, the other for the values they were taught, we have gone backward in race relations.  And this does not even address the other issues of racism which I have intentionally not raised in this post.  Because before we can ever expect to heal or move forward once again, we need to be able to talk to each other.  And talking does not just mean speaking, but listening also.

And those memories are not gone, if you really want to hang on to them, the internet can take care of you.  But raising our children to fight against racism was a good thing.  Would you have not done it if you would have known you would have lost a favorite TV show, or could not listen to a favorite song anymore because it was boycotted or banned?  Of course not.  If you are a reader of “Paul’s Heart”, I know you are a compassionate and education person.

As for the Flyers and the Yankees, there will be other ways to fire up fans and show patriotism.  And it will not be long before this fuss is forgotten either.  But what will not be forgotten, are those that have been hurt, and why we still have such a far way to go, to dealing with racism.

I am to this day, still an avid Flyer fan.  And I understand why they removed her statue.  The recently discovered music was horrific to learn about.  And honestly, even in the 1970’s when she debuted the song at that Flyer’s game, even if it had been known then, I do not think she would have been stopped from singing it.  But this is not the 1970’s.  And just as we can recall what our grandparents were like and how they behaved, our children see how the times are now.  And all any of us want, is for everyone to get along, regardless of color.  Kate Smith is not the first, nor will she be the last, that will be shown to have held such ugly sentiments.  Can there be forgiveness?  Absolutely.  Should it be forgotten?  Absolutely not.


“Why Can’t You Work?”

Over the the last twelve years of my survivorship, one question that comes up over and over and over again.. “why can’t you work?”  This question comes from many different people, former co-workers, friends, and even family.  The question coming from most of the family is really kind of a weird question, because most have all been there from the beginning, well, except for two.

A recent photo with my daughters and I, I am sure the question will come up again.  And yes, that question has come up from my daughters as well.  I have taken my time explaining my health to my daughters, because as many of the health issues that have popped up, occurred when they were much younger, and the last thing that I wanted to do was scare them with the realistic possibility of dying – a near fatal heart blockage, and a battle with sepsis.  But every year, as they have gotten older, they have noticed that I do less and less physically.  For nearly all their life, they knew me as someone who put in a lot of hours at work and at home.

My daughters were not there when I went through my battle with Hodgkin’s Lymphoma, and was treated with an exposure to radiation of four times the lifetime maximum, and several toxic chemotherapy drugs.  Thirty years ago, survivorship was based on five years.  In simpler words, we were not expected to survive past those five years.  And clearly as you are reading this, there is a problem with that thinking.  In fact, that thinking was way wrong even before my diagnosis.  Hodgkin’s had already been treated for decades before me, with even more barbaric treatments.  I personally know survivors with 10, 20, 30, and more years survival than me from Hodgkin’s.

So here is the problem, only up until a decade or so ago, less than a handful of doctors realized that survivors of Hodgkin’s were developing side effects from the exposure to the high dose radiation and chemotherapy.  And just as tragic, only a small percentage of us long term survivors, literally out of millions, we are probably lucky if 10% actually know that many of their health issues today are attributed to their treatments.

Medicine had not been teaching cancer survivorship to its future doctors and nurses.  And for the most part, even today, many medical personnel only learn of these issues from their patients.  Nothing like on the job training.  The truth is, there is actually a well documented resource available for survivors like me, as well as new survivors.  And it is available to EVERY doctor, EVERY doctor.

The Survivorship Guidelines are put out by the Children’s Oncology Group.  So, if you are interested in researching this further, simply go to the link I provided.  Back to the question posed at the beginning.

Some cynics may say, “gee Paul, you seemed fine to do everything before the doctors told you everything that was wrong with you.”  The only part of that statement that was correct,  was not that I was able to do everything, but I was in unbelievable pain, and could get no answers as to why.  Oh, and the heart thing, I put up with the symptoms of a “widowmaker” blockage of 90% of my main artery, simply because I was not seeing any doctors because I was not being followed up.  The cardiologist who discovered this initial condition put it this way… “it was not a question ‘if’ you were going to die, but ‘when'”.

Following that, I developed a team of experts at Memorial Sloan Kettering, who discovered many things that had developed over the years, finally answers as to why I felt this way.  But getting answers was not the most important part.  Discovering how I was going to manage the issues that had now been discovered.  Everything that was happening to me could not be cured.  Everything was and is, continuing to get worse.  My health is not about getting better, but rather slowing down the progression of these issues, management.

The average person honestly could not handle hearing the things that have been done to me.  Shit, many in my family could not handle it.  Which leaves me only one option, I have to put on the “brave face” and just not let anyone know how I am feeling, or the unbelievable pain I am dealing with.  In order to do that, at least until a few years ago, was to go on multiple pain medications combined with a sleep medication because the pain was still bad enough to keep me awake in spite of being on 3 opiodes at the same time.  But all those medications were able to get me though my work day, which was important to everyone else.  Forget the quality of life that I was sacrificing just to keep others happy.

And the downside to this effort, because I pushed my body as hard as I did, my issues were actually accelerating in deterioration, my body getting much worse, much quicker.  In spite of being put on multiple physical restrictions at work from certain activities, I was still given other details which either made things worse for me or at best, continued the pace.  I had restrictions of weights, mobility, and movement.  Were it not for the American With Disabilities Act, I would have been out of a job long before that.  But because of the ADA, my employer was required to accommodate my health restrictions as much as they could, as long as there was work for me to do.

But as the years went on, I continued to push myself.  Back in 2012, and January/February of 2013, I made five trips to the emergency room (one by ambulance at 3am), two that had the potential to end fatally.  My heart surgery four years earlier was the wake up call I should have paid attention to earlier.  I should have been listening to my doctors for all those years, telling me I should consider retirement on disability because of all the health issues I was now dealing with.  But I was not prepared, especially mentally to “quit”, which is what I felt I was doing.

A couple of years after that, and some new directions that my employer was making staff and building wise, combined with actions related to my divorce, I ended up on that path to reality, disability.  I have long had the handicap placard for my car.

I do not like to use it, but will if necessary.  I really still have a hard time with the stares at the appearance of my youth and the shell of my body showing no reason to need this assistance.  But depending on the activity, if I need to carry something, or the weather conditions, my body is instantly shut down by symptoms that develop very quickly, taking a long time to recover, and I really hate that worse than the stares.

So, when my daughters ask me, “why can’t I work?”, I explain to them that I really do want to work.  But besides the issues of my health, there are these factors to consider by any perspective employer:

  •  I have limited movement of my shoulders and upper body that can actually cause me to collapse out of instantaneous exhaustion due to cardiac issues, and due to radiation damage, I have an increased risk of tearing both shoulders apart.  So I am limited to activities of no lifting any sizable weight, or repetition.
  • Having only 75% of my lung capacity, weather and climate, including indoors can have an effect on me
  • And you are only as strong as your skeleton an muscles can provide, and my body is at an increased risk of fractures and muscle injuries.
  • And of course, with Hodgkin’s being a cancer of the immune system, and having had a splenectomy (spleen removed) through the process, I am at a higher risk of getting sick, especially from people who come to work sick, or do not believe in vaccinations.

Now if you factor in all those facts, two other important details.  The last thing an employer wants is an employee being hurt on the job, because that would mean a claim on their Worker’s Compensation plan.  And quite possibly other penalties depending on what could have been done to prevent.  It would make no difference me having these issues, if I got hurt working for them, it would cost them.

And then there is this.  Following my heart surgery, I became unable to maintain a robust attendance record I used to brag about.  Until then, I used to brag about year after year of perfect attendance, including during the days of my original treatments.  In 30 radiation treatments and 8 months of chemo, I never missed one day of work.  But years later, my body could no longer take it.  Following my heart surgery, I would never see perfect attendance again, in fact, absenteeism for me dropped to 30% and near the end of my employment, I missed half of my work schedule either due to my health issues themselves, or doctor appointments to deal with them.

So, “why can’t I work?”  My daughters get it.  And so should anyone else who asks this question of me, or asks it of anyone else forced into the unintentional and unwanted decision of going on to disability.  It is not that I cannot work.  But who wants to hire someone who has all the health restrictions that I have, and the attendance record I have?  And the only way that I can get around those two issues is to be on multiple opiodes taking away the quality of my life.  My decision is an easy one to make.

I am not immortal.  And I know that the health issues that I am dealing with, have reduced my mortality a lot.  I joke that I must have been a cat in my former life, given that I have dealt with a health crisis at least 5 times that could have resulted in my death.  And if by some chance, this is more than a coincidence, I am doing what I can to take care of the remaining 4 lives that I have left.

My doctors have told me they will do what they can to make sure that I see my daughters graduate, walk my daughters down the aisle (if they choose to get married), and even see grandchildren.  I just need to do what I can do which means listening to the warnings of my doctors and not the gripes of people who feel their judgement of something they do not understand should carry some weight in my remaining years.

I cannot do the things I used to do, and not just work.  I no longer play softball and volleyball, my exercises are limited, I no longer ski or do other outdoor activities.  I do what I can, within my limitations, that allow me to enjoy the time with my daughters.  I am not crippled by my health, at least not yet, and to protect the average person who cannot handle what I am dealing with, I go through each day, continuing to only allow people to see the shell of a “seemingly healthy young man with no outside signs of health problems… who even smiles.”  Who I am on the outside is what matters to you.  What I am dealing with on the inside is what matters to me.  And that is why I am not working.

And for those in my life that still want to doubt, I carry my entire medical file with me that backs up everything I am dealing with.  Someday, my daughters will ask to see it, so that they learn the details.  But for now, they know what I am dealing with because they have seen it.

29 Hard Fought Years

Today is the day I recognize 29 years since I beat Hodgkin’s Lymphoma.  But I feel differently today, than I have my other anniversaries.  While I generally do not celebrate my longevity as a rule, because of the issue of Survivor’s Guilt I deal with (why I am still here, and others are not), as I reflect on this date, I acknowledge the chip I have on my shoulder.

I am not one of those who take the attitude “cancer changed my life for the better,” but neither am I bitter for having faced this beast.  But when I talk about a “chip”, that definitely has defined who I am and how I live my life.  So if I am not bitter at cancer, what, or rather who, am I bitter with?  What have I finally realized is driving me to keep surviving?

From the beginning of my diagnosis, I made it clear that I would fight with every fiber of my being.  And I believed that I had every chance to get through this, not just because my doctor told me how “curable” Hodgkin’s was, but because I was not going accept anything less.  This disease was going to be fought on my terms, me versus Hodgkin’s.

As was often the case growing up, dealing with playground bullies, I was often challenged by multiple bullies at one time.  I never understood this, as I was smaller in size than the majority of my classmates, so I was an easy enough target without being ganged up on.  But my cancer would treat me no differently.  It would take no time, before I was not just fighting cancer, but I would be surrounded by others who wanted a piece of me as well, for their own reasons.  And just like on the playground, it is hard enough to face one entity larger and more powerful than you, but to take on others at the same time, was not only unfair, not only made things more difficult, but only made my resolve stronger, resulting in this massive chip on my shoulder.

From day one, I did my best to minimize any loss of time from work.  I not only did this because I needed the distraction, a sense of normalcy in a time when I had lost all control of my life due to a “cancer schedule” I had to follow, but also so that any absence would not be put on the shoulders of my co-workers.  But it did not take long before some of my peers would begin whispering among each other that I was receiving special favors, though none were able to list any such things.  The funny thing is, again, unknown to my co-workers, as I have mentioned in previous posts, they ended up with better health insurance coverage because of what I was facing.  As time went on, and in spite of me missing ZERO, nada, zilch days from work for my 30 radiation treatments and 8 months of chemo, somehow, it was assumed that I had to be getting some sort of special preference from management.  I was not.  But having to deal with this petty jealousy often left me wondering did I do the right thing, remaining at work while I fought for my life.

Once my treatments were over, and I had grown tired of the harassment due to what I had just gone through, I made the decision to look for other employment, only to be faced with the prospects of discrimination.  It was devastating to hear the words, “we would prefer if you were in remission longer for us to consider you for hire.”  I would take this national insurance firm that I was applying to, to the Pennsylvania Labor Relations Board because I was definitely being discriminated against.  And that is when I learned about the new law, which admittedly to this day still has too many flaws and loopholes, the Americans With Disabilities Act had just been signed.  This company was one of the first to learn it needed to change its hiring practices.  They had me completing all kinds of trainings and certifications, interviews, and even a medical physical (which I passed), only to turn me away because I had cancer.  “Not any more,” said the PLRB.  “You must change your hiring practices that only upon consideration of hiring, in other words, you are good to go, pending a physical, and if you pass the physical, then you should be hired.”  In other words, I passed the physical because I had nothing wrong with me.  My cancer was behind me.

And then there was the day when I discovered the price I would pay for my remission of my cancer.

I cannot speak for other cancers, but at least with Hodgkin’s, there is this “magical 5 year mark.”  It is a milestone to consider being “cured”, to get health and life insurance, and well, statistics or survival are based on 5 years.  What this 5 year mark really means, is that science never really expected us to last past five years.  And what this means, is that science never really studied  what happens to a Hodgkin’s survivor after five years, as far as developing late side effects from the treatments that saved our lives.

Nearly eleven years ago, I found out one of those issues that I had developed.  Radiation damage to my cardiac system over the years nearly caused my death with a potentially fatal heart attack.  I had not been seen by a cancer doctor in over fifteen years, so no one was following this issue.  But as the cardiologist who diagnosed this issue told me, “it was not a question ‘if’ you were going to die, but ‘when'”.  The normal empathetic human being would be like “wow!  How scary!  Glad they caught it!”  But just as I found myself dealing with the self-absorbed concerns of my co-workers with my Hodgkin’s journey, I found myself in the same situation recovering from my emergency bypass surgery.  Co-workers were ridiculing my recovery taking so long.

The day after I was released from the hospital, I had begun to go on walks, as ordered for exercise.  Unfortunately I lived on a street that many of my co-workers traveled to get to work.  Yep!  They saw me walking, said I looked great and there was no reason I could not be back at work.  Forget the fact that my breast bone was split open to do the heart surgery, I “looked good” enough to go back to work.  To make matters worse, due to my radiation history, what normally would have been a 3 month recovery, radiation would cause healing issues, and with my physical job, it was recommended that I remain out 6 months.  But of course, co-workers who know more felt this was excessive.  Forget the fact, that many of my fellow survivors who have had this surgery, have actually had their breast bone “separate” needing to be re-set.

It was not bad enough that my co-workers had put pressure on me out of their jealousy, but even my employer got in on the act, threatening to terminate my employment if I did not return to work in a timely manner, but when faced with physical restrictions, while initially refusing, it was not long before I once again introduced an employer to the ADA, and that under this law, I was protected from the harassment and discrimination that I was facing.  But as I said, the ADA is flawed with loopholes, and that just mean more fights, one after another.

Once I realized the cause of my cardiac situation, I found medical care that specialized in long term side effects.  Of course the bad part about that, a Pandora’s Box if you will, many other issues were discovered that I now deal with:

  • cardiac
  • pulmonary
  • skeletal
  • thyroid
  • renal
  • gastrointestinal
  • immunity
  • muscular

There are more, but the list is daunting enough.  As everything has been discovered, it left me with more physical restrictions, and more jealousy from my peers.  I had also developed a very bad habit.  Since all of these issues were internal, invisible to the naked eye, only allowing people to see the outer shell of me, I unintentionally convinced people that there was nothing wrong with me.  Yet, every time I went to the doctor, I got the same doom and gloom reporting of how things have progressed, especially because of how hard I was on myself physically “just to keep others off my back.”

So, it soon became not just fighting others to prove I have these health issues, fighting to prove I need time to recover from injuries, even those closest to me soon were implying that these issues were not as serious as the doctors said.  A near fatal bout with septic pneumonia had me accused of trying to get out of going to work once I was released from work, in spite of doctors still saying I had the pneumonia in my lungs.

My daughters were not born yet when I went through my Hodgkin’s fight.  And they were too young to know just how severe my heart issue was eleven years ago, but they know it was serious, seeing me with all kinds of tubes coming out of me.  They witnessed me being rolled out of my home at 3am on an ambulance stretcher dying from pneumonia.  Now teenagers, they are being told of the many health struggles I deal with, still on their age level.  But there will come a day early in their adulthood, they will undoubtedly be charged with decisions concerning my health care.  Which means they will learn everything that I have dealt with over the years.  But make no mistake, my fight for survivorship continues for them.  I want to see them graduate, hopefully go to college, get married if they choose, and perhaps, even become a grandfather.  But I am fighting for that chance if they should give me that opportunity.

Today, I still have to fight others who still call me out.  I have even had some make comments like “it is too bad you survived.”  And just like all the others in my past, only a very few limited people besides my doctors know what my body is being put through.  I have had to “prove” myself time and time again in some of the most unexpected settings.  But this much remains, I WILL NEVER QUIT FIGHTING!

Do you see that?  I WILL NEVER QUIT FIGHTING!!!

Yes, 29 years of cancer survivorship is a big deal.  And hopefully by getting this “chip” out in the open, I can allow myself to get ready to really let loose and celebrate the big milestone next year, that I never would have thought I would see the day.  And yes, my Survivor’s Guilt is very real, and the reason it is so hard to celebrate these anniversaries.  I cannot grasp why I get to be here, and so many do not.  Those who were not able to be one of the most curable cancers.  Those who were unable to get the “survivorship” care necessary for these special issues that we deal with.  Those who were able to get the care, only to pass away from post-care following procedures.  Yes, I do ask “why me?”  A lot.

I never get that answer.  And because of that, I will never quit fighting until I see the day that everyone has the chance that I have had, longevity.

Coming up in a year… my 30th year milestone.

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