Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Inspired By…”

A Christmas Lesson To Be Remembered Every Day

My dad and I did not get a lot of time to spend with each other as I was growing up.  My parents were divorced, and there were decisions that my father had made which resulted in that lack of time.  But an event in my early adulthood involving my dad, would teach me one of the most important lessons in my life.

Though the exact date slips my memory, it was around this time of year, that I received a horrific phone call from my sister-in-law.  My stepmother had been hit by a car, while crossing the street.  Details were few, other than where I had to go.  Once at the hospital, I met my dad.  I could see where I get the characteristic of “holding it together” in times of crisis comes from.

Initial conversation of course was steered toward the injuries, and they were severe.  And it really was uncertain if she would survive.  It was almost ten hours since the accident, and in the way early hours of the morning, the main doctor came out to talk to the family.  The doctor explained everything from each injury, to the prognosis of recovery, if any, from each.  The doctor also explained what would be done to make each recovery possible.  But clearly, even the initial 48 hours were going to be critical.

It was around 2:30am, as we waited for the doctor to come back out with any further news, my dad asked me to come outside with him.  He needed a cigarette.

Up until this crisis, my father and I barely talked.  We were casual with each other as I harbored a lot of ill feelings as a result of my childhood, even into my early adulthood, which I blamed him for.  He lit his cigarette, took a huge drag and exhaled, then began a conversation that I will never forget, and changed our relationship with each other for the rest of our lives.

My dad began to tell me what happened earlier that evening.  I was kind of confused because I was more concerned about my stepmother, and thought my dad would be too.  But he had something on his mind, and it was a distraction to him that he needed to deal with, so he could better direct his focus to his wife.

They had come home from work that evening and realized that they would need to do some last minute Christmas shopping.  Of course, any shopping at this time of year is stressful enough.  But there was another issue that they had to deal with, and it caused an argument between the two of them.  It was a disagreement over their car insurance.  Not wanting to waste time, and get the shopping done, the issue over the insurance was left unresolved and my father left the house and crossed the street to go warm up the car.

It was now dusk, necessary for cars to have headlights on, or at least should have.  My stepmother left the house, locked the door, and made her way across the busy street.  My father had just turned his head to see where she was, and had seen her make her way halfway into the street.  My dad never saw the car coming from the direction behind him.  And evidently, neither did my stepmother.  And since the driver did not have his headlights on, in all likelihood, he never saw my stepmother.  All my dad could do is watch in horror, the result of the impact (which I will spare the details).

My dad broke down into uncontrollable tears.  I had never seen him this way.

“It was all my fault.”

Again, not knowing my father really well, I really did not know that he had any particular feelings, let alone, guilt.  But here we were in the parking lot of the hospital, and I was actually hearing it from my father, pure guilt.

“Dad, no.  It wasn’t your fault.  How could you think that?”

His reasoning was simple.  They almost always left the house at the same time.  And this particular time, they did not.  And it was because they were angry at each other.  Things were said to each other.  He was pissed off, and left the house without her, one of the few times, leaving him unable to prevent her from getting hit by the speeding car.  Along with the tears, came a lot of anger at himself.

By the end of the cigarette, he had regained his composure.  Strangely, he began a totally different conversation.  It was directed at me.

“I wish things could have been different for us.  I won’t explain myself, but I need you to know, if I could change what happened between us, I would do it in a heartbeat.  I wish I would have been there for you as you were growing up.”

I was shocked, but figured he was actually in shock, that he would actually be worried about our past.

“Dad, don’t worry about it.  Let’s get back upstairs.  You are needed up there.”

He wanted to talk more first.

“I’m sorry that I wasn’t there for you when you were dealing with your cancer.”

Now I was really confused.  Where was all this coming from?

“It’s just, my mom was put in the hospital.  They told me it was for gall stones.  She died.  It was then that I found out that is cancer.  But I can never forget how she looked and felt during that time, and I just could not bring myself to see my son that same way, and die.”

Okay.  Definitely not the night to be having this discussion.  And honestly at that point in my life, I was well beyond worrying about either time in my life anymore.  My dad and I were on our way to mending our relationship and I had no interest in going backwards.  But he insisted.

My dad was dealing with guilt, a large amount of it.  In fact, it seemed everything that had happened in his life, that caused him guilt, in order for him to move on, he needed to release that guilt.  He needed to be able to focus on his wife upstairs, still in surgery.  While confusing for me, it did seem to give him some relief to have gotten some of these things off of his chest.

But clearly, it did not give him the relief he was actually looking for.

“I should have been with her.”  I do not know if this was to mean he should have been hit also, or hit by the car instead, or prevented the whole accident.

“Dad, there is nothing that you could have done.”  The guilt was overwhelming for him.

Days later, it would be discovered that my stepmother, along with her other injuries, would also be suffer brain damage from the accident, especially when it came to memories.  And this is where the lesson came in that haunted my father to his dying day.

He would never get the chance to apologize for what was said that evening.  My dad could tell her, but she had no recollection of what happened.  My father was left alone as the only witness to what led up to that accident.

It was many months before she was released even into a rehabilitation center.  But clearly, things could never return to what they once were.  And my father would carry that guilt of that night forever.

My dad committed himself to caring for her, the rest of her life.  It would have been easy just to leave her in a nursing home, to let others be responsible for her.  And for the first time in my life, having only known my father as being someone irresponsible to family, very quickly my respect and admiration for my father grew.

My dad spent well over a decade caring for my stepmother, until he himself was faced with a serious issue, lung cancer.  My dad and my stepmother were together over four decades before and after marriage.  Together they got to enjoy being grandparents, many times over.

But my dad never lost the guilt over what happened that night.  And that is the lesson I refer to in the title of this post.  An argument that evening, ended in tragedy.  Not because of the argument, but because there would never be any closure for my dad.

“Never go to bed angry” is a familiar expression.

My father died from his cancer, amazingly, my stepmother is still doing quite well today.  It was arranged prior to his passing for them to be placed together in the same facility, to allow them to finish out his life, together as they had always been.  My dad took great care of my stepmother.  But there was one thing he could not do, ever, and that was to say “I’m sorry” to his wife.  Because of the things that were said, and the accident that followed, he never got that chance.

Please do not go to bed angry.


30 Birthdays… 30 Years Of Hodgkin’s Lymphoma

Continuing on with my 30th anniversary posts of my diagnosis of Hodgkin’s Lymphoma, I will not lie, my birthday thirty years ago really sucked.  When asked what I wanted, only one thing, and it could not be bought… a cure.  And though thirty years of remission has happened, it came at a price to my health with long term side effects that developed from the treatments I received.  For many of us long-termers, we often find ourselves wondering, was it worth it?  Would I do it again?

My answer is yes.  Reflecting back on things that have happened over 30 birthdays since I was diagnosed, not only would not have happened without the treatments, but I have to even give the experience of having had cancer, to making me who I am today and giving me the blessings I have experienced.

First, I have met well over a thousand other cancer survivors whom we have all shared our stories with.  Each on as inspirational as the next.

For a time, my career involved working in medical research, not only dealing with one of the chemo drugs I was given as a patient, but other cancer studies as well.

I regained my love to write, and have contributed articles as well as stories of cancer issues and survivor issues.  In fact, one of my stories was actually performed live!!

You can actually find the story performed, “My Dad Was Just Like Me” on Youtube.

Doing the unthinkable, I took on politics briefly, campaigning twice for school board.  It was a local election, which provided enough excitement for me, and it was the success of the first came, literally by a less than a few hundred votes short, that gave me the hope to run again.  It was an exhausting but very rewarding experience.  Unfortunately, it also did give me a behind the scenes look at politics, which I am not a fan of.

But the most important events in my life, of my thirty years of survivorship, came when I adopted my daughters.  They are my reason for living.

They are the reason, when my doctors tell me, they want to make sure that I see them graduate, perhaps get married, and maybe even have grandchildren, I will do my part as well.  And to do that, means that I will obviously be celebrating many more birthdays, and many more milestones.

But I would be remiss, if I did not mention, I do miss so many who have passed on, not just from this horrible disease or its effects, but everyone.  I wish you could be with me today.

The Progress In Diagnostics In 30 Years

If there is one comment that I do recall, besides being “lucky” to have gotten Hodgkin’s Lymphoma, it was that Hodgkin’s was very treatable, especially when caught early and dealt with quickly.  “Time is of the essence,” as they say.

During my meeting with my oncologist, besides explaining the different possibilities of being treated:  chemotherapy, radiation therapy, combination of both, there would still be a process that I would have to undergo to determine my treatment options.  The same is determined, with some differences in other cancers, a process called “staging”.  Simply put, “how bad is it?”

Obviously, I could have been really lucky and only been Stage 1, with just a single node.  So far, at this point, only one node was biopsied, blood work was not showing anything, and a CT scan had not shown anything.  I was hopeful with all of the other results.  And just like not knowing what a hematologist was at the beginning of this series of posts, I had no idea of the things that were about to be done to me, to make sure I was properly “staged.”

Before I get started, for those who have no experience in being diagnosed with a cancer, this may be both interesting and intense.  For those who have been recently (as in years) diagnosed, you may breath a heavy sigh of relief that you did not have to go through some of these things because of the newer technology (like a PET scan to actually determine your “stage”).  And those of us who are “long in the tooth” of our survivorship, we still remember all too well what we went through no matter how many decades ago it was.  Needless to say, I am happy for the easier diagnostic methods available today.

The plan had been to get me started on treatment before the new year started.  Yep.  I had a lot to go through during the holiday season.  Just one of many reasons I do not like to celebrate this time of year.  The first thing I had been scheduled for, was something called a lymphangiogram.

Just like you have blood vessels that carry blood through your body, your lymph system also connects all those nodes in your body to other organs and such through a similar highway, but much smaller.  So small in fact, that they lymph vessels are so difficult to see.  Unlike a tech finding a good vein to draw blood from by seeing it, in order to find this lymph vessel, you need optical enhancement support to help you see them, and it also cannot be done by just looking through the skin.

The doctor needs to be able to inject an agent into your lymph system to “light it up” on an x-ray to see the entire lymph system.  The end result is quite cool, seeing every lymph node glowing in your body.  The down side to this process, the substance is injected through your feet, by way of inch long incisions in both feet.  Unlike my biopsy, I was going to be awake for this process, lying down on my back, for what seemed like hours.  The toe areas on both of my feet would be numbed, and one incision made in my left foot, and unable to locate a vessel in my left foot, a second incision was made just to the right of the other incision.  The numbness had begun to wear off just as they were beginning to suture up my feet.  As I complained about the pain of that process, I had been advised that I would be sewn up very quickly and it would actually be more painful to inject more numbness with several more sticks.  I shut up, and let them finish.  I was placed in a wheel chair, and rolled off to x-ray.

I went home following the procedure, told to relax and stay off my feet.  One thing about someone who never gets sick, they do not know how to act.  And so, as I had stitches in my feet, the wounds closed up, and I was feeling fine, I decided to join the rest of my co-workers in our weekly city-league basketball game.  This was one of those times, when all the “knives should have been removed from the drawer, not just the least sharpest.”  I lived alone, and my fiance was nowhere to warn me not to play, but one thing I did not consider, after the game was over, “what would have happened if either of my feet would have been stepped on”, let alone the stress on the incision on my feet.  But you know what?  For at least that hour or two, I was not thinking about cancer anymore.  I needed to feel normal.  And as I would soon come to realize, it would be the last time, I felt in control.

This is a photo of my feet, 30 years later.  Pay no attention to the tan lines as I live in south Florida and wear only flip flops 95% of the time.  But you can see, the scar on my left foot, and both scars on my right foot remain.

The news was good from the results, and just as they were with the blood work, CT scan, the lymphangiogram also showed no signs of Hodgkin’s.  This was awesome!

Clearly, my oncologist had enough experience, and knew the steps that he wanted to take.  He informed me that the next process in the staging, and unfortunately has not changed in 30 years, was a bone marrow biopsy.

I had heard this term once before.  My stepfather needed to have one done, and it had been done through his breast bone.  He would describe as taking an extreme punch to the chest.  Okay.  No problem, I had been in my share of scraps as a teenager, I could handle this.

Now, the thing about me, and in spite of everything I have gone through not just in my cancer years, but also my survivorship, I am extremely squeamish.  I do not even look at the dentist tray of tools.  So the last thing I wanted to see, were the tools I could assume would be strong enough to get through bone.  Of course, another procedure I would have to be awake for, I was relieved when I found out, the biopsy would be done through my hips, both sides.  I would not have to witness anything, just a couple of sharp sticks in my ass.

It was not my normal oncologist doing the procedure, but one of his partners.  I laid down on the bed.  I was asked if I wanted another pillow, and I naively asked why?  I was warned this would be uncomfortable, and very quickly I realized that the pillow was for me to scream into.  I am going to say this a lot with these posts, “I had never experienced pain like this in my life.”  When the doctor was getting the sample, it felt as though my ankle was being pulled up through my leg.

If you have ever heard the term “growing pains,” those pains occur in your bones.  Well, they were removing samples from inside my hips.  Of course there would be pains.

With the first sample taken from my left hip, and done, the doctor decided to start making small talk with me, I assume to try and distract me.  Oddly, he began to talk about pro-wrestling, which fortunately, I knew quite a bit about.  It did not change the amount of pain, nor how loudly I screamed into the pillow.  However, one word got my attention.


Now of course, since I cannot see what is happening, I could only assume, he made a mess with the sample, or perhaps I was bleeding too much.  But then the doctor said this, “I lost the sample.  I need to go back in and get another.”  I have no idea if he said anything more to me because at that point, I was so angry.  I do not even remember the pain or even screaming.

The results would come in and would just like the others, negative for any sign of Hodgkin’s.  Just the one lymph node.  This should have been a piece of cake.  Perhaps even no treatment.

And then my oncologist said this, “there is one thing more that I want to do, and this pretty much will determine what stage you are.”  I began to feel so much frustration.  Time was important.  He even said so.  Yet now several weeks had gone by since my diagnosis, and seemingly wasted on tests that were not going to determine shit.  Why was this not set up and done sooner?

To make matters worse, this next procedure would not get done until after the holidays.  So much for timeliness.  But I would find out why it took so long to schedule.

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