Paul's Heart

Life As A Dad, And A Survivor

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.


Not As Bad As It Looks

Continuing on with my “30th Anniversary” series posts… at this point, I was nearly 75% of the way through my radiation treatments.  I had blood work done every Monday morning to see if my body was going to be able to tolerate the full dose of radiation treatment.  And to this point, I had been able to do just that.

I started each day the same, going to the radiation suite at 7:30 am, get my minute dose of treatment, making it to work by 8 am.  Physically, the only noticeable thing you could tell about me was that my neck area had begun to develop a skin burn, much like a sunburn.

At this point, internally, I had done as advised, avoiding acidic foods like tomato products and citrus foods.  Because what looked bad on the outside, was nothing compared to what was cooking on the inside.

More importantly, I just kept going day to day, not missing a beat at work, and especially my physical appearance still looked “normal.”  With my wedding just months away, clearly I had made the right decision.

But as the days went on, the skin burn got much worse.

This is not an actually picture of my irradiated area.  But you can imagine, from my jawline, to the balls of my shoulder joints, to the middle of my abdomen, this is what my skin had begun to look like.  Only now the skin was becoming dry and brittle.  I was not allowed to use any kind of skin lotion because most contained alcohol, which of course would cause more dryness.  Instead, I had to use vasoline, and because of its greasiness, ruined a lot of clothing.

Keeping my eyes on the prize, and side effects to a minimum both physically and mentally, I made it to treatment number 30.  Blood work remained strong.  And a scan would show my Hodgkin’s was no in remission.  I could get married without any worries, go on my honeymoon (we altered our plans because we originally planned a Carribean trip, but with all this radiation, felt it was not wise to get more sun), and the doctor would follow up with me upon my return.

It was time to get my life back on track.

No Mistaking Me For The Hulk

As I continue down the path of celebrating 30 years being cancer free from my Hodgkin’s Lymphoma, February marks 30 years that I underwent my option of choosing radiation therapy to be my cure.

I have to admit, I made the decision based solely on stereotypes and what I thought would be common sense.  At this point, my cancer was staged to allow me to make the choice between radiation or chemotherapy.  Well, chemotherapy I knew would be tough, because that is all you ever saw publicly.  I had a wedding coming up in less than 4 months, and the last thing I wanted to look like, was someone so decimated and sick on my wedding day.  Yes, men can feel this way about their appearance too.  And radiation?  Well, really, as I understood it, was only going to last around a minute a day, for 30 days.  In my mind, just like going through an X-ray.  Easily done, and would not be visible when I got married.

I may have been told a lot of information about what would happen, but to be quite honest, I know I did not hear what I now know about radiation.  Sure, it is very successful at treating Hodgkin’s.  But I was never told about the dosage or the late side effects.  The only thing I was told initially, is that there would be eventual skin burning (like a second degree sunburn), and a chance at developing a secondary cancer (like skin cancer), and an increase chance of pericarditis (enlarged heart).

So, all that was to be done, was “mark me up” with tattoos, actually just 4 dots placed in a cross-hair pattern, at the base of my neck, middle of my abdomen, and on both balls of my shoulders.  This was important to line up the linear accelerator over the same location for all 30 treatments.

Unlike today, where radiation is beamed direct and targeted, back in the 1980’s were we treated “scattered field”, which meant that the radiation would scatter beyond the targeted area.  For this reason, all efforts were made to protect my spine and my heart with the use of lead blocks.  But remember, this was going to be scattered field, and only currently do I realize, the lead blocks really only gave direct impact protection, but not protection from the scattered results.

As I lay on the table for my first treatment, there is an issue with the linear accelerator.  I am asked to get off the table, while the correct the problem.  I think, “thank God.”  But seriously, what if something went wrong, would life imitate art?

The treatment eventually began.  I went Monday through Friday, for six weeks.  Receiving all of my treatments.  I started each day this way, early, which enabled me to not miss any work.  While my skin did begin to burn as predicted, and there was some issue with swallowing from the same issue, I did not get sick.  The treatments would be done, a scan would hopefully predict the radiation did its job, and I could get back on track planning my wedding.  Be done with Hodgkin’s forever.

Radiation changed a lot from the days of using cobalt.

And just as there has been progress from the early days to the 80’s, so much progress has been made in learning that “using less” is actually better, and still as successful.  I will admit that I am not current on just how much radiation is used today, but I know it is considerably less, and instead of “scattered”, focused directly at only the cancer, preventing damage to surrounding organs and tissue, meaning less risks.

Let me put it to you this way, according to Stanford University, my treatment (not known back then) produced the possibility of dying by an increase of 50% because I discovered in recent years, my dosage was 4000 rads.  Today’s patients receive a dosage most likely less than 500 rads, or even lower.  How powerful is radiation?  Even workers at nuclear power plants are not to be exposed to more than 100 rads.

Serious stuff.  But you know what?  It works.  And I am here, approaching 30 years of survivorship.

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