Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Adoption”

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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Merry Christmas To All


 

I do not recall in any kind of detail, the thoughts that went through my mind thirty years ago.  My fiance was insisting in my going to Christmas Eve service that evening in spite of me wanting to have anything to do with God at all.  I felt that my minister had spurned me, because he was too busy (of course he was, it was the Christmas season).  But I was really angry.  I had everything going for me.  I was getting married in five months.  And instead, I was facing something that had the possibility of killing me.

I did attend services that evening, candlelight.  Admittedly, it is one of the more beautiful services to attend.  But as the night wore on, my anger turned to tears, as best as I could to hide them from everyone around me.  No one else had known yet was I was dealing with.  But I found myself finally, perhaps not as tough as I thought I was, scared even.

Over the decades, I have gotten to enjoy so many more Christmas holidays.  And none could be more meaningful than those celebrated with my two daughters.

However, just as I experienced thirty years ago, the holidays are not always so joyous because for one reason or another someone may not be able to be with us, or perhaps is no longer with us.  Soldiers protecting us overseas or stationed somewhere other than close to home.  Distance apart from loved ones.  Tragedies.

I miss so many at this time of year, family and friends.  Perhaps none so more deeply than my daughters and my father.  While I will get to see my children during the holiday, it was Christmas-time that I saw the side of my father that I never got to see as a child, though in the role of “pappy.”  Not caring for the holiday at all because of what happened to my stepmother, he went out of his way, above and beyond to make sure his house was ready for when my daughters came to visit.  Finally at an age where they can understand what had happened, back then, all they saw was a joyful “pappy” and were all to willing to play with all the interactive  decorations that he put on display, knowing he would play with them.

I do miss my dad, especially right now.  I miss being with my children.  And I definitely miss that interaction between the three of them.  And I know I am not alone in having feelings like this, which I know can make this time of year very difficult for so many.

But I truly hope, that somehow, you can find a way, make a pleasant memory of this holiday.

To everyone reading this, I wish you a very Merry Christmas (and happy holidays to those who do not celebrate Christmas but rather celebrate the holiday season in other ways).

If You Would Have Known


If there is one thing that my daughters know about me, they can always count on me.  My daughters know that I will always encourage them.  Both of my daughters know that I believe in them.  They also know that they can come to me when they need help or advice.

I want to be careful here so that I do not upset other parents.  It is a parent’s choice the decisions that they make with their child as far as extracurricular activities and how many they participate in.  My approach was two-pronged.  First, I wanted them to find something that they liked to do.  Second, they commit to it.

If there is one lesson in life that I remember growing up, it was learning the importance of an education, and not just relying on the dreams of being a pro-football player or movie star, or someone else earning popularity or riches.  The odds would be against me, nothing would just fall into my lap.  And if I worked and studied hard, I would find out that my life would be pretty good even if I did not make that superstardom.

My oldest daughter had an interesting, yet I am sure not a unique approach, not wanting to practice, just do it.  From the first dance class, she showed quite a bit of talent.  And when it came to singing in the church choir, she shined.  But as I said, when it came to practice, it is not that she did not feel that she want to practice, she was bored with the level of performance that was expected, as when the participation actually meant something.  It was not unheard of during karate classes, for the instructor to ask me, “where did she learn to do that?”  To which I replied, “I thought you taught her to do that,” referring to a higher level of move than what she should have been able to do.

My younger daughter took practicing differently.  She is a bit of a social butterfly, so she enjoyed the extra time around all of the other children.  And like her older sister, she did well.  She would learn many techniques, and be promoted in belt rankings several times.  But for whatever reason, she had just one issue.  Competition.

The odd thing was, during practices and even belt promotions, all of the same participants were there.  The same parents attended each event and practice, and my daughter knew them all.  But for whatever reason, she would totally break down, when it would come to a competition, where she needed to perform individually.  I never expected to see that from someone who had only shown confidence, and fun.  But it was something that I learned about my daughter.  And it would be a lesson that would make a difference to her later on in life.

Neither of my children are attention hounds, but during school, there will be times that you are called upon in class.  Whether it will be to reach a page from a book, or answer a math problem, a student will have to speak up in front of others.  And on a minor level of participation like this, is one thing.  I would find out during her foreign language course that she takes, that her experiences in karate helped her to overcome.

In order to be graded in a foreign language, you not only have to be able to read it and write it, but you must also speak it.  And unlike reading and writing, speaking must be done individually.  And that would mean that my daughter would be in a similar “arena” as she was during competitions in karate.  Only now, able to overcome the pressure that would torment her.

I am proud of all of the efforts that my daughters put in to what they do.  And now that they are older, they now talk of their future, and their course selections will mirror their needs to achieve those goals.  Neither back down from any challenge, and if they feel they are not challenged enough, the challenge themselves.  And at the end of the day, they know that I am proud of them, believe in them, and love them.

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