Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Bullying”

22 Apr 2019

“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.

http://www.survivorshipguidelines.org/

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.

Posted in Bullying, Cancer, Education, Family and Friends, Inspired By..., Recreation, Side Effects, The Heart | Leave a comment
03 Mar 2019

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.

Posted in Adoption, Bullying, Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment
27 Jul 2018
1 Comment

What Did I Just Hear?


My daughters and I have been enjoying our Summer visit with each other.  Just as I have done their whole lives, I try to work with them educationally, with outreach, and of course fun.  They get a little of each.  Yesterday was one of the “fun” days, or at least it was supposed to be.

I decided to take my daughters to a pottery studio to let them try something new.  Of course, my rule is, do not expect them to do something that I am not willing to do so also.  But with fair warning, when it comes to art, I have difficulties even drawing a stick person.  My hopes would be, that the pieces my daughters were working on, would make anyone not pay any attention to the monstrosity that I was working on.

It was a typical sunny day, with no school, so my idea was not unique as there were other families there as well.  There were two sets of fathers with his kids, and a mother with her kids.  About an hour in, a father walked in with four young girls, one his own daughter, probably around ten years old.  He set everyone up at a table with paints, and pieces, and then informed them, that he would be back in a while.  Apparently, he is a multi-tasker as he told them that he was going to “work out” while they are painting and will return.

Well, he did return.  And it soon became obvious that the only work out he got was an arm curl lifting some form of drink.  He wreaked of alcohol and cigarettes, and his demeanor had changed from when he dropped the girls off.  Paying him no mind after the smelly cloud evaporated from our table, I went back to my “project” and my daughters continued with theirs.

Not hearing how the conversation started, the father stood up, with one of the children’s pieces and yelled out, “what, is everything made in China?”

I imagine this is how incidents start that are now becoming a regular occurrence on Facetime and YouTube.  His voice caught my attention, but unsure exactly what he said, or prompted it, I put my brush down, and looked up.  He was approaching a table that had a woman and older son at it.  So I figured he was just some obnoxious ass showing off for someone he may have known.  But he walked by her and continued toward the shelves of unpainted ceramic items and began to lift each piece looking underneath for identification where they were made.

I now realize, this father is a racist bigot, and came back from his “workout” with some liquid courage in him.  My attention squarely focused on him, and for what may come out of his mouth next, or worse, any actions, I hear a softer voice of concern speak out, “Daddy, STOP IT!”  The man’s daughter had obviously seen this play out before, and clearly been affected by it.

I was not the only one to notice this jerk, as other parents had stopped what they were doing as well.  But I was the only one with Asian children.  I could feel my adrenaline pick up.  My daughters are of Asian descent, and my eyes give off the appearance of being Asian as well, though unfortunately I am not.  I am now focused on this father, and what his next words or actions might be.  Then I feel a sharp pain in my left shin.  My daughter, also very aware it seems of the situation, had noticed my protective glare, and had kicked me under the table to snap out of the zone I was in.

And I know why she did it too.  My daughters are very proud of their heritage, although if you do not point it out, they are just my daughters.  But if you do point it out, then it best be complimentary in nature.

Many years ago, I believe my oldest daughter was in second grade, a boy on her bus made the unwise choice to make a stupid comment about China, and without thinking about it, she reacted with a backhand that not only surprised everyone around her, but gave the little racist-in-training a bloody nose and a lesson.  Though I was proud of my daughter for sticking up for herself, more importantly did not provoke anyone, had she been a bit older, she may have responded a bit more tactfully.  Aside from that, I had been running for school board at the time, and one of my platforms was dealing with bullying.  This was going to be a situation I was going to need to deal with.

Back when my daughters were adopted, I was given a book, on learning how to deal with situations concerning mixed ethnicity families.  I read it, but never really gave it any thought in the 21st century, that I was going to have to be dealing with these issues anymore, especially given the racially mixed area that we lived.  Today, where I live, I know that racism exists yet.  I also know that because of a certain section of our society, and with the support of social media platforms, that racist bigotry is in fact becoming mainstream, more prevalent than ever.

So many things went through my mind yesterday, and to be honest, in 2018, there is absolutely no reason, that an asshole, probably twenty years my junior, should have any racial hatred.  Yet here we were.  Protect my daughters from this monster, whether from his words or actions.  Trying to figure the balance so as not to be tolerant or complicit, because that is what enables bigotry to escalate, and I did not want to escalate the situation, I removed my glare in his direction and continued what we were doing.

There will be some who will protest my inaction, and to be fair, there is a part of me that feels it would have been better for my daughters to witness how I would shut out and shut down this racist.  And perhaps if I were alone, I might have reacted differently.  But my priority was protecting my daughters from any more of his hatred.

We all finished our projects shortly after, and went for lunch.  And as we often do, we talked about what had happened.  I got the kick under the table not because I was prepared to defend my daughters, but my daughter, felt sorry for his daughter, who was clearly embarrassed by her father’s bigotry.  We talked about the erroneous ways people think about others with different ethnicities and why.  It was just supposed to be some painting fun.  It turned out to be so much more.

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