Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “April, 2018”

The Worst Thing You Can Say To Someone

Yesterday, news came across my FB feed, yet another long term survivor of Hodgkin’s Lymphoma passed away.  While I plan to do a tribute to her on a future post, as I have done for others here, I need to express something that I just do not feel is appropriate to include in such an expression.

Before I get to the bulk of this post, I need to state clearly, without any doubt, I am a very positive person.  But I am also someone who must deal with a harsh reality.  At no time however, does this change my outlook in life.  That said, there is no way for me, or many others to just “get over it.”

I am a long term survivor of Hodgkin’s Lymphoma.  And when I say long term, I am approaching my 30th year as the countdown clock on this page displays.  There is no set timeframe that declares you a long term survivor, though for the purposes of this post, I am basically going to refer to those of us who were treated prior to the turn of the century.  During this time, the majority of us were treated with either radiation or chemotherapy, or a combination of both.  I do not think there is any of us who would say it was a “cakewalk”.  We may have had different attitudes of dealing with all of the side effects and the treatments themselves, but it most certainly was not easy to get through.  And for those of us who did hear the word remission, we really were not expected to see past five years survivorship.  So medicine never really bothered to study the possible late developing side effects once we passed that milestone of five years of survivorship.  Instead, many of us were given very vague, and very minor possibilities of concern.  In my case, I was told about the possibility of a secondary cancer or pericarditis (inflammation of the heart).  But I was told, the chances were very slim.

This year, of the first 2 dozen survivors that I have personally met, the final survivor was diagnosed with a “widowmaker” heart blockage attributed directly to her cancer treatments (just as I dealt with in 2008).  So much for a small percentage, because now 100% of this small, yet unscientific group, was dealing with some form of extreme late effect from the treatments that “cured” them of Hodgkin’s.

So, the good news is this, as a result, over the last couple of decades, medicine decided that patients like us, need to be followed.  The problem was, most of us, once we hit our 5-year mark, disappeared from the care of the oncologist making communication and surveillance of health nearly impossible as no way to reach us… until… an event has occurred.  We “guinea pigs” are the reason that patients today are followed up “forever” (as long as the patient does not disconnect).  And for those of us who have had new events, if we are lucky, get enrolled into survivor clinics so that our new health issue is dealt with properly, but the rest of our health is also followed.

We do not just “get over it.”  We cannot, physically or emotionally.  And again, that does not make us negative thinking people.  We need to stay aware of the way our bodies have changed, and the special needs and care we need when something comes up.  This “Pandora’s Box” if you will is both a blessing and curse.  Because while the average healthy person who does not need to see a doctor on a regular basis, may just have to see a doctor, when a serious issue arises, and by then, measures to treat or cure may be extreme or too late, but at least that person was not worried every day.  In our case as survivors, this is our reality.  Our late developing side effects cannot be reversed.  They are progressive, and will continue, until the day we die.  But being followed in a survivorship clinic, or at least dealing with a doctor who has knowledge of these late effects, monitoring patients with annual testing, can watch as the issues progress until they get to a point, that concern outweighs the risks.  We can often get taken care of before an event takes place in other words.

Psychologically, this is Hell.  We still do everything we can on a daily basis.  We do not wake up wondering is today the day we drop dead.  We are still grateful for being able to spend time with our family and friends.  But in the back of our minds, we do know the reality.  Is our next scan going to show enough progression to require surgery?  Do the risks of doing nothing now outweigh the risks of correction?

Many of my fellow survivors who have passed away, nearly a dozen just over the last 3 years, died as a direct result from late effects caused by their treatments decades ago.  Others, died from complications of corrective surgeries and lax follow up care due to doctors, nurses, PA’s assuming the procedure completion was routine.  Most common complications are either perforations, ruptures, and infections.  Our compromised physiologies cannot be treated like the average patient.  Once the first dose was administered, and in some cases, even some of the diagnostics (like splenectomies – spleen removal), everything internal has changed for us.  And for the rest, it is all of a sudden.

Except for you reading this post, the majority of my friends and family, 95%, have no idea what I am dealing with.  And the same can probably said for my other fellow survivors.  This is either by ignorance (do not want to know), or by protection (I do not feel you can handle knowing what I deal with).  So, I do my best to make sure that my outer shell, shows no signs, so that it does no interrupt anyone’s positive auras.  I cannot count the number of times I cringe when I hear “you look good,” especially by the doctors, because inside I feel like shit.

As I said in the beginning, I am a positive person.  I have to be.  I have two young daughters who want to spend a lot more time with me.

For the naysayers though who say, “yeah, well you didn’t seem to have any problem with your work assignments before until you were told you had all these other issues.”  And that is true, to a point.  I was raised with a mentality to give 100% to everything I do.  Show up to work sick as a dog.  Wait to go to a doctor until you pass out from the pain.  But from January 2008 until April 16th of 2008, I went through daily episodes, multiple times a day, experiencing a chest tightness.  The feeling would go away after a period and I would continue whatever I was doing.  I cannot remember, but there is a likelihood, that this went on way before January.  In any case, this tightness was actually a 90% blockage of the main artery to my heart, referred to as… drumroll… “a widowmaker.”  And they call it a widowmaker for a reason.  You do not survive the fatal heart attack.  My cardiologist told me, it was not a matter of “if” I was going to die, but “when.”  I had already worked over 120 days like this, how much longer could I have gone.

Anyhow, once the bypass was done, and revealed that I this damage due to radiation therapy, I was referred to a survivorship clinic.  But I also noticed something else, I was feeling other issues that had been masked by the pain in my chest tightness now.  And sure enough, I would be diagnosed with other issues as well, more than a dozen.  I finally had an answer to why I was not feeling fully recovered.  Once getting diagnosed, I needed either a treatment or management plan.  For the most part, once everything was diagnosed, it was a matter of management for everything.  Corrections to the diagnosis posed more of a risk for complications, so now I wait, year after year, watching the progression get worse until they have to do something.  In other words, wait for another type of “widowmaker” to develop.

My doctors were adamant, I needed to change my lifestyle, “slow the fuck down” (their words not mine).  I could no longer push myself the way that I had been doing, because while the issues could not be reversed, the progression process could be slowed down.  But my pushing myself physically day after day was not going to accomplish that.  I knew what they were getting at.  And in spite of having the protections of the Americans With Disabilities Act, upon my return to work, I went right back to the way I had always been, work long, work hard.  And I had gotten away with it too.  I went to my doctor appointments, got all my tests done, and while there was progression, I did not feel there was any concern.

Until the time period of March 2012 through February 2013, when I would make 5 trips to the emergency room, one by ambulance in critical condition.  My body could not take it anymore.  And so, I leaned hard on the ADA to protect my right to earn a paycheck.  I would still try to do what I could, but I definitely needed to change at this point.  My body was starting to die, cardiac, pulmonary, muscular, spinal, endocrine, gastro, everything was being affected.  My doctors continued to encourage me to retire on disability, I needed to change.  But my mind was not prepared to have me feel “worthless”.    Or as many often describe me today, as lazy.

Someone with my issues is a liability to an employer in several ways.  I am more likely to get hurt on the job.  God forbid I die on the company property, the insurance check that would come from them.  Lost time became an issue as did work restrictions of what I was and was not allowed to do, based on the abilities of my body, determined by my doctors.  But as long as I felt the guilt being aimed at me by both my co-workers and supervisors, I was always going to push myself, not accept what was happening to me.  I was going to die.

Today, the changes in my life, some voluntary, others not, I believe I have slowed the progression, though I cannot confirm it as I no longer have health insurance, and am therefore cut off from my survivorship clinic.  My body is a ticking time bomb waiting for its next event, and then it will be dealt with as I have done prior, as an emergency.  I still only let people “see” what I want or feel they can handle, I do what I am able now within my limits and I do not force myself.  But no longer having the pressure of meeting the expectations of anyone else, other than surviving, I feel I have the chance to experience what my doctors told me a long time ago.  “I want you to see your daughters graduate high school, college, get married, and to see you become a grandfather.”  I will never forget that reminder of just how close I have come, and the reality and fragility still exists as I am reminded when another fellow survivor passes away, of losing it all.

I do not care that my arms do not raise over my head.  I do not care that I cannot walk up stairways.  I do not care that I spend the majority of time indoors to deal with pulmonary issues.  I do not care that I cannot do some of the things I used to enjoy doing like playing ball.  I have learned to live with, accept, and adjust, what I need to do in my life.

Yes, I am a very positive person.  And I am driven to make sure that my doctors words come true.  And if family, friends, strangers want to refer to me as lazy, or because they cannot see with their own eyes the internal issues I deal with as “fake,” that is on them.  I am not the only survivor out there dealing with this challenge.  But I can make sure that I do what I can.  But I definitely cannot just “get over it.”



P.T. Barnum – A Good Dad

As far as circus movies go, The Greatest Showman is making quite a buzz this year, most notably for the mix of storyline and musical numbers.  Though not 100% accurate, the movie tells of the background to the origins of the what until its closing, became known as the Ringling Brothers, Barnum, & Bailey Circus.  The Greatest Showman is not the first foray into movies about the circus.  Decades ago, a film called The Greatest Show On Earth directed by legendary Cecil B. Demille, took place  years later into the circus as it had become a travelling show.

Of course, the time periods were not the only difference between the two films, star of The Greatest Showman, Hugh Jackman looked nothing like the real Phineas Taylor Barnum.  Definitely no mistaking their lack of a resemblance.

Because I do not wish to spoil anything from either movie, I will not go into much details about either movie.  However, in The Greatest Showman, while the film chronicles the beginning of one of the greatest conmen known, also ironically described as a philanthropist, though he would only admit to doing charity work if there was a profit for him, the subplot revolved around wanting a difference for his children as opposed to the lifestyle he was raised in.

P.T. Barnum was portrayed as a street rat hustler, conning to survive.  When he meets the love of his life, clearly from the other side of the tracks, and with her support, he builds a museum of freaks which would eventually grown into the 3-ring circus.  His motive was clear, he wanted only better for his children, than what he had experienced as a child, being laughed at for his status in society, poor.

Seriously, what parent would not want a better life for their children than they had growing up?  No matter how well off or how much a person struggled, it would only be natural to want better.  The problem for Barnum, as portrayed in the movie, as his efforts and success grew, he lost sight of why he was doing what he had done.  Branching out into theater on top of his museum of novelty freaks, he hardly spent time with his family.  And in one fell swoop, it would be gone.  And not just the museum and theater.

Growing up as a child in a divorced family, I know the struggle my mother faced with my father estranged.  I know what it was like to do without, money or a father.  I know what it is like to enter the world of adulthood without a penny in your pocket, or prepared for being on your own.  All I know is, like Barnum, I wanted better for my own daughters.  Just as Barnum needed to be reminded, when my father and I had mended our relationship, he even complimented me on my efforts that regardless of how well things were going for me, that I always appeared to not forget where I came from.

As my daughters grew, there were obstacles in my way as well.  First, a critical health scare changed how I lived me life, at least until denial overcame those issues, only to be faced repeatedly five years later with more extreme health crisis, all related to treatments of Hodgkin’s Lymphoma almost 30 years ago.  But as I faced these challenges, I did all I could to overcome the deficits, especially financially.  Until I got to the point where I heard from my oldest daughter, “I wish you didn’t have to work so much.”

That should have been a wake up call for me as to how at least one of my daughters was feeling.  But I was so driven to provide everything I possibly could for my children.  Five years after my heart surgery, I almost died again, as the exhaustive way I lived my life, was destroying my body.  And along with it, would have been any future with my children.

Other issues would come up, and all of a sudden, everything that I had worked for, everything that I had hoped for my children, was gone.  I was no better off than the day I graduated from high school, in fact, perhaps even worse.

My children know how much I did for them.  They also know how much I wanted better for them.  But they also believe in me, that I will still do all that I can, even in the short time that I have left either in their childhood, or my cancer survivorship, they will be better off than I was.  Already I see so many differences in both of them compared to my childhood, from academics to social interactions.  I remain involved in both of their educations, encouraging and providing guidance when needed.  They have gotten so good however, that now they are scheduled to take Honors level schoolwork, something I have never done.  Socially, they are way more accepted in school than I was.  I feel that now is the time, and that I can concentrate more on life lessons for them in regard to relationships and what to expect from others and what to accept.  I want them to learn the value of money, learning to live within their means.  I want them to learn the lesson I clearly forgot, as did Barnum, do not forget to take time for your family.

Barnum got more time to do better in doing better for his family.  As am I.  I do as much as I can to communicate and visit with my daughters as often as I can.  I can tell that they both respect me, and love me.  I can see their independence developing in each of them, and soon, they will want to make decisions on their own.  And they will do well.  They both know how proud of them for the respect they not only give, but for the respect they deserve.  I still have more to do, but I believe that I have done better for them, and have time to do more.

Clearly Barnum did turn things around, and once on better footing, returned to what was important to him, his daughters, while others took care of the business.

I do not need to watch anymore circus movies, because one of my snacks will always remind me of what I need to keep in mind first and foremost, my children.

Awesome by themselves, or with any kind of condiment or added to a special treat.

Congratulations Stephanie!!!

I want to give an extremely happy update on someone that was featured on “Paul’s Heart” several years ago, Stephanie.  You can read her story under “Pages”, titled “Stephanie’s Words.”

Stephanie is a survivor of Hodgkin’s Lymphoma like me, but unlike me, she is young and I must admit, a determination stronger than me.  Our journeys with Hodgkin’s were quite different, and our life in remission is also quite different.  But as you can see in the photo collage, she has come a long way over the years.

Well, if you are someone dealing with cancer, whether at the beginning stages, nearing the end, or beginning your new life after cancer… then look no further to see that there is life after cancer.

Stephanie got married last week to her long time boyfriend, and when I say long time, I mean that he was with her through her battle with Hodgkin’s.  Together, they were already tested with “better or worse, sickness and health.”  Stephanie and her husband are a formidable team having gone through one of the most difficult times in their lives, and that was before they were married.

Along with continued remission, remember Stephanie, I am always “looking in my rear view mirror on the road of remission to make sure that you are still following me.”  I look for more big milestones in your remission, but even bigger things to come for you and your husband.  Congratulations Stephanie.

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