Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “December, 2019”

Because (Struggling To Understand And Accept Survivors Guilt)

The following is a story that I had written for an annual book compilation project.  I submitted two pieces.  This was the piece that was not chosen.  The other piece I will share at the end of March after publication.  In the meantime, I must thank my good friend, and fellow survivor Lara Vaughan Lazenby for being my mentor on this piece, challenging me to write as deeply and personally, and of course, grammatically correct.

Survivor’s Guilt.  Two words that make no sense being put together.  These two words combined make the ultimate antithesis.

Surviving cancer should be celebrated.  But for many, like myself, the fact that I am here, sharing this story, others are not.  Medicine could not save their lives.  This leaves me with a daily struggle of “why me, why not them.”  That is right, I carry guilt because for whatever reason, for whatever cards were dealt, whatever fate has decided, I am still here.  Others are not.

This feeling is not to be confused with that of “It’s A Wonderful Life,” the movie whose main character George Bailey, wonders what the world would have been like without him.  Quite the contrary.  I have much to be thankful for over these past thirty years than to wonder in that way.  Especially to be blessed with two wonderful daughters who mean the world to me.

The feelings I have are for those who either were unable to get through their fight, or faced additional challenges caused by treatments or late side effects.  Why them and not me?  Many of us went through the same treatment regimen.  Some were exposed to less of the toxicity than many of us from decades ago.  Technology and advances in medicine are supposed to provide better and safer success, yet I continue to say good-bye to too many.  And even with my own multiple and severe health issues from my treatments, here I still stand.  Why?

I am nobody special.  I am not a celebrity or professional athlete.  I was not in the middle of discovering anything earth-shattering.  I did not lead a squeaky-clean life.  Some of those who have passed never even got to experience life beyond childhood.  And though I lack the power to make the sun set and the moon rise, I will state this is not fair.  Between the doctors, the medicine, our bodies, reactions, and the multitude of other factors, why I am still here, writing this story, and others are not?

Over my thirty years of survivorship, I have personally met hundreds of other survivors, some from all over the world.  From the middle of my treatment schedule, others came to me and asked me, “what is it like?” trying to find out what to expect as they began their own cancer battles.

I soon found myself being someone other patients and survivors could talk to because I “got it” when it came to the emotions and struggles of getting through treatment, and issues with life after cancer.  In the social media circle of support, I often found myself between survivors who had misunderstandings about feelings as a result of support from others.  I found myself a voice of reason to help others understand that the mind of one person dealing with cancer, does not necessarily mean you automatically understand the mind of another.  Others simply view my day to day life as a longevity that they hope to enjoy with a family and a productive life after cancer.  Most importantly, to advocate for yourself and your health.

When it came to those who would pass away, I spent much time with them and their families just trying to offer the awkward comfort.  All the while wondering about their thoughts as I sat across from them thinking to myself, “why me and not them?”

I have spent several years in therapy dealing with my survivor’s guilt.  I do not know if I can ever let go of it.  Maybe I may not even want to.

A friend of mine, named Danny, shared a meme on Facebook that is relevant to all of us who have survived, no matter how long our survival has endured.  “One day, you will tell your story of how you overcame what you went through, and it will be someone else’s survival guide.”

My name is Paul Edelman.  I was diagnosed with Hodgkin’s Lymphoma thirty years ago.  I went through six weeks of radiation therapy, one day at a time.  I endured eight months of chemotherapy, a total of sixteen treatments, one dose at a time.  I took each day of my remission one day at a time.  I fought every challenge of discrimination in the workplace, in the insurance industry, and even in medicine, one day at a time.  And when I did not feel well, and all doctors could do was shrug their shoulders in puzzlement, I made them look harder.  When I was told I could not have a family because of my treatments, I became one through adoption of two beautiful daughters.  I enjoyed a lengthy career doing what I loved.  And I have been blessed to meet and know so many other survivors.

But still, why me?  Why not them?  Because.  Just because.

The Turning Point With My Father

The briefest way that I can preface this post, my father and I spent most of our time estranged, due to the divorce with my mother.  I do not know details, and with my father having passed, I have no interest in hearing just one side.  But the relationship I had with my father as a child, I saw him every other weekend, on a Sunday afternoon usually, for a few hours.  As I approached my teens, I saw him less.  And as I graduated high school, I informed him that I had a ticket for the graduation ceremony, and if there was any father/son future between us, he needed to show up that evening.  He did not.  And that was that.

Over the next several years, I remained true to my threat.  And at the age of twenty-two, I was diagnosed with Hodgkin’s Lymphoma.  And still no sign of my father, or any interest or concern from him.

Following the completion of my treatments, my father and I did have some minor conversations, nothing substantial as far as I was concerned.  He would end the talks saying, “I wish I would have done things differently.”  I would always respond the same, “yeah, me too.”  I had no interest in “coulda shoulda woulda.”  When I needed him, he was not there.  I did not need a father at this point in my life.

Over two decades ago, early in the evening, on December 23rd, my telephone rang.  It was my now-former sister-in-law.  My stepmother had been hit by a car, crossing the street in front of her house.  She was in bad shape, and in the hospital.  There was a lot going on by the time I got to the hospital, but my father was clearly focused, trying to understand everything that he was being told, and be able to make decisions that would affect his wife, his partner at that point of over twenty-five years.

Her injuries were extreme, with a head injury, life threatening.  So many doctors.  So much information to take in.

Several hours later into the night, my father felt an opportunity, and a need, to go have a cigarette.  He asked me to join him.  I am not a smoker, but I was figuring that perhaps my father was looking for a little clarification to the many things that were said to him.  I unofficially had a lot more medical knowledge that most of my family because of my cancer journey.

He lit his cigarette.  I stood there with my hands in my pocket, fighting the cold air.

My Dad:   There is something I need you to know.  There was a reason that I never came to see you when you were dealing with your cancer.  My mother had been in the hospital for what I was told, was gall stones.  Instead, she would eventually die from gall bladder cancer.  I will never forget how she looked, because she had cancer.  I could not bring myself to see you in that same condition.

I was speechless, and shocked.  First, what the Hell brought this up?  He should be focusing on his wife, not confessing to me.

Me:  Dad, don’t worry about it.  You have more important things  to worry about right now.  I am fine now.  Just concentrate on her.

My Dad:  You don’t understand.  I would give anything if I could change the way things went.

Me:  I know Dad.

My Dad:  No, I wish I had been there for you during your childhood.  I wish I had been there for you.  I wish I could get that time back with you.

At this point, I am really confused, especially emotionally.  First, at this point, we kind of agreed recently to just “start over,” and this was only stirring up old anger in me.  And second, why was he worried about me?  His wife was the one that need his attention.

My Dad:  We had been fighting.  There was some last minute Christmas shopping to do but I was dealing with the car insurance.  I got mad because I just wanted to get the shopping over with, so while she was getting her coat on, I went out to the car without her.  I started the car to warm it up, while I waited for her to come out.  I looked to my left to see if she was coming, and at that point, all I saw was her being hit by the car, flying through the air.  I could not stop it.  It should never have happened.  I would not have happened if I had come out with her.  It should have been me.

I now saw what my father was doing, rather dealing with.  My father and I did not talk much, let alone express any feelings or emotions.  But my father felt guilty for what had happened earlier that evening.  And in order for him to face and deal with that guilt, he had to unload all of the other guilt he carried.  He had to do it while he had the chance.  And here is why.

My stepmother had suffered a major head injury from the impact.  We would later learn, as she would somewhat recover, she would have no recollection of the accident.  And that was a good thing for her, bad for my father.

They were arguing, and perhaps said some things that were not nice.  And neither would get the chance to apologize.  For my stepmother, she had no recall.  For my Dad, everything was his fault.  He was never going to get the chance to say he was “sorry” to my stepmother, so he was unloading his guilt to those he owed that apology.

On one hand, I became slightly intrigued because he was talking to me about stuff that I was not aware of, but by the same token, he needed to be focused on my stepmother.  I knew that.  I had to keep him focused.  He could not afford to let this be about me.

This tragedy went on for a long time, until she was finally placed in a rehab facility, eventually, to returning home.  My father insisted on taking care of her, presumably for the rest of her life, because of what happened, as if some sort of penance.  She is still alive today, outliving my father now, over five years.  But he never did get to apologize to her.

It was this situation, that I made the rule, I would never go to bed angry, for this very reason.  And just as my father had to deal with divorce, as do I, it was from conversations that I would have with him later on in his life, that I would adopt how I would handle my divorce, and custody.  For one thing, I was not going to disappear or remove myself from my daughters lives.  I know how that made me feel as a child, and I would not let my daughters feel that way.  But the other thing I was not going to do, and continue to be this way, was the way that he carried himself.  He never said one bad thing about my mother.  He knew the divorce was between he and my mother, and had nothing to do with me.  He was not going to involve me in that process, even later in life as an adult.  And it is that example that I support my daughters in the same manner.

It was the second half of our lives that we actually got to do it all over again.  And we took full advantage of it.  A tragedy that evening would be a spark to recover and rebuild, and most importantly, learn.  I make sure that my daughters know that I try to reach them every evening.  I remind them daily that I love them.  And I make the most of any and all time that I get to spend with them.  Most importantly, I make sure that there is never a need or a worry, about leaving something unresolved, hopefully by not allowing it to happen in the first place.

I love my daughters more than anything, and I know my Dad felt the same about me.

An Observation On Long Term Cancer Survivorship

As soon as I had completed my treatments on March 3, 1990, 30 YEARS AGO this upcoming March, I was prepared to close the chapter on my life that dealt with cancer.  It was done.  All I had to do was get through some follow up appointments for the next several years, and that would be it.

It was not joke what I went through between the chemotherapy and the radiation, but I did get through it.  And I was grateful for that.  It was all that I ever wanted.  The reality however, my body was damaged goods, not being able to do something as simple as donate blood or body organs due to the toxicities.  But still, I wanted to help.

I discovered a new pilot program called “Cansurmount” starting with the American Cancer Society.  The concept was simple.  Match a cancer survivor with a current cancer patient, and give peer-to-peer support.  As a cancer patient and survivor, an opportunity to meet or talk to someone else who has gone through what you have gone through is often more beneficial than common psychotherapy, because you are being helped by personal experience, not just someone in a suit and degree.

The program was slow to develop, so along with seeing other Hodgkin’s patients, I was also soon seeing patients with other types of cancers.  The program no longer exists, but I continue my efforts to help as many as I can to get through their cancer fights with guidance and emotional support.

It was during my initial year of remission, that I was approached by a woman, another survivor of Hodgkin’s Lymphoma.  Her name was Linda Zame.  And she was not just a survivor of Hodgkin’s, she was a long term survivor.  She had told me about a “listserve” of long term cancer survivors that she felt would be good for me to join.  I was touched.  But really, I was only months just having finished my chemo, hardly a “long term” survivor by definition.  She argued that my length of survivorship did not matter, I needed to be put on that list.

I went to the ACOR web page (American Cancer Online Resources) and signed up for the email list of long term survivorship of cancer.  It did not take long before I was shaking my head, “what the hell am I doing on here?”

Yes, this list was filled with long term cancer survivors.  But it was not a “happily ever after” web site.  These people had health issues caused by their treatments, and many, had nowhere to turn.  Medicine was not prepared for people who would live long enough after cancer, so studies were never done to see health issues that would develop (late side effects), and worse, how to treat them.  I was done with my cancer.  This site had nothing to do with me.  And off I went.

And then I got back on, around my anniversary, just to announce I had gotten through my first anniversary, and was clearly lucky not to have any of these issues.  But the site had not changed.  And again, off I went.  This cycle went on for several years.  And then I read about someone, treated around the same time as me, and was around the same age as me.  This was exactly the criteria I had been looking for to gauge my survivability.  But “Tammy” was not just like the others on the site, her issues were so extreme.  And worse, no one seemed to be able to help her medically.

I stayed on this site every since.  And during that time, Linda, would constantly be on me about “following up”, especially getting a colonoscopy, which to me seemed ridiculous because I was not even twenty-five years old.  But Linda knew what she was talking about.  She had Hodgkin’s Lymphoma, but was also dealing with colon cancer, most likely related to her exposure to the treatments for Hodgkin’s, known to have the potential to cause a secondary cancer.  Of course, I scoffed off the recommendation as unnecessary.  I was healthy.  I stayed healthy with no issues, year after year.

My fifth year in remission, also brought me the unofficial release from my oncologist.  I stopped getting reminders for my now annual follow ups, so I took that as my release.  I was done.  No more cancer for me.

I continued my efforts to reach out to those dealing with cancer.  Hoping to be that inspiration to others, “you can do this.  Look at me.”

Then in April of 2008, reality hit me, in a huge way.  I was dying.  I just did not know it.  My treatment history caught up to me with a “widow maker” scarring of my main artery to my heart creating a 90% blockage.  It was not a question of “if”, but when.  But clearly, could have happened anytime.  I had symptoms for over four months, just did not realize what was going on.

And with that, I became one of “those” from that web site, dealing with the sever issues also.  I was now “all in.”

Now I was going to experience the many frustrations of these other survivors as well.  Where do you turn to for care?  If doctors were not educated about us, how do we find out who can treat us?  Or is it a crap shoot?  At the time, there were only three or four known facilities, Memorial Sloan Kettering Cancer Center, Duke University, and Stanford University I know of for sure.  But there was no way for me to get there.

Again, Linda chimed in.  “Don’t let economics determine your care.  If you have the insurance, find a way to get that care.”  And I made my first appointment with Sloan Kettering.  You can see my many experiences there on this blog, so I want to keep moving forward on this particular story.

This was a game changer for me, not just in my care, but also in the support that I offered to other patients, and now, survivors.  Progress had been made in treating cancers, especially Hodgkin’s Lymphoma, but medicine was so far behind in caring for the long term survivors.

This ACOR list serve became a critical communication tool to teach and inform other survivors that there was help out there, if they were able to find it, and get to it.

But just like progress, one of the main problems in dealing with our late effects, was not in diagnosing the problems, but the care for them.  Many of us would go in for corrective surgeries that were diagnosed, but would shockingly die following the procedures.  We were able to get properly diagnosed, but the after care lacked because again, medicine was ill prepared to deal with our complicated bodies, especially when it came to immunity issues.

In the late 1990’s and early 2000’s, I said good bye to so many long term survivors, not because of procedures to correct a late developing side effect, but rather complications.  Linda was one of those that passed from complications of what otherwise should have been routine for a “normal and healthy” person.

Progress is being made.  There are more survivorship medical clinics, now all across the United States.  And medicine is slowly catching up.  But us survivors know that we still have to rely on each other, communicate our experiences to each other, so that when we are faced with an emergency pertaining to our complicated health, so that we can “teach” our doctors what needs to be done.

And that is having an impact.  I have noticed on various forums that I participate in, that although there may be complications, survivors are not only getting through their corrective surgeries, but surviving events and issues related to that.

Which leaves one more thing… awareness.  Of the various forums that I belong to, it is not an understatement, that it is likely, out of over a 1/2 million long term survivors of Hodgkin’s lymphoma, less than five thousand know what is happening to their bodies, leaving their doctors frustrated, scratching their heads, trying to match up symptoms to a patient with a particular age or health history, that just do not make sense.

Up until eleven years ago, I thought I just felt like shit.  I did not see anyone who could tell me different.  It is a different story today.  So now, while we have people finally getting treated for their late effects, and the necessary precautions now being taken, there are still too many that need to be seen, and just have no idea.

There is life after cancer.  And it can be a great life.  We just still need to take care.

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