Paul's Heart

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.

“Whose Life Is It Anyway?” Loss Of Control

I love the “Pirates Of The Caribbean” series of movies.  And there is not better picture to describe the way your life gets taken from your control, than when the two main ships were battling against each other, and dealing with the vortex.  This is exactly how it felt 30 years ago, staring down the diagnosis of Hodgkin’s Lymphoma, recovering from major surgery to “stage” my cancer, and the road that was going to lead ahead.

Under normal circumstances, we have our own control in the palm of our hands.  Sure, our employers and teachers can take some of that control away from us, because, well, it is an authority thing, and we have to do what they say in order to get paid or to achieve our diploma or degree.  But when we get sick, seriously ill, it is the realization that we lose all control, to our illness if it is serious enough.  Sure, we have a say in how we get treated, but ultimately, it is the doctor calling the shots.  Even the illness and treatments (along with side effects) control how we get through each day, if we have enough stamina to go for a nice afternoon walk, or barely enough to get a drink from the refrigerator.

The “staging laparotomy” for my Hodgkin’s did something to me that nothing had ever been able to make me do before, miss work.  Up until that point, I had never missed one full day of work.  Recovering from this surgery was going to mean I would miss an entire month.

That was not the only loss of control that I had felt.  At home, I was dealing with a new issue, being cared for, and being cared about.  I was not prepared for the “overboard” attention that I was receiving since my diagnosis.  It was overwhelming.  So much so, that instead of returning home from the hospital, I made the decision to “hide” away from everyone, staying at the home of my future in-laws.  I knew there that I would have quiet, able to regain my focus on what was ahead, able to get things back under my control.  Or so I thought.

This is an actual picture of my abdominal scar from the laparotomy.  Looks pretty neat and healed now.  But back in January of 1989, it did not look like this.  You see, one of the procedures during this laparotomy, unknown at the time, would leave me unable to fight infections as my spleen had been removed.  For a person with a normally functioning spleen, though the situation would be possible, it would be less likely, and less dangerous.  Only decades later did medicine realize how important the spleen actually was to the body to fight disease and infections.

In any case, a few days convalescing at my future in-laws, my scar, still fresh, had become infected.  Just when I thought I was getting my life back under control, my body decided otherwise.  But in my need for control, I took myself away from those responsible for my care, more than a half hour away.  The house was empty, as my fiance and her parents were at work.  I clearly could not drive.  I had no choice.  I had to call my aunt.

She was retired and in her early 70’s.  But she was the only one that was going to be able to get me to the doctor’s office, who wanted to see me right away.  I had not choice.  The infection was already bad enough, and could possibly go septic, something that would have the potential to kill me.

Unfortunately, it was not soon I realized, that the infection was not the only danger I was facing.  Now, I want to make perfectly clear, I am not making fun of any elderly drivers or making any commentary on if they should be driving or not.  But I will say without certainty, the infection was not the immediate danger to my health.  Oh, how I wish I could have just driven myself to the doctor’s office.

At some point, most all of us have had an experience driving along side, or in between concrete barriers while highway construction or repairs were being made.  Well, at the time, Rt. 309 was undergoing a major construction project, creating a new interstate.  What it meant was, while the first five mile ride was tolerable, as we approached the construction area, I now was afraid of something worse than cancer, my Aunt’s driving.

As the road shrank from three lanes to one, my Aunt brought her car to a complete stop.  This was to allow ALL other vehicles behind her, to enter the “cattle chute” before she did.  The reason why became obvious as she soon accelerated to 10 miles per hour, the pace she would keep for the remaining 10 miles on the highway, nervous of hitting either side of her car against the concrete barriers.

I eventually did make it to the doctor’s office, without any additional medical needs.  Though clearly I had developed a case of “white knuckles.”  The treatment of my incision did not take long enough to allow my nerves to settle from the journey there, before heading back.  I will spare the gory details of what was done, though even for someone squeamish like me, it was freakishly interesting to watch how he treated the wound.

On the way back to the house, it hit me.  I have no control of my life anymore.  I have a wedding in five months.  Nobody cares except for me and my fiance.  I have bills to be paid.  Nobody cares.  Be here on this day.  You need to do this.  Cancer was now completely controlling my life.  Even as I recovered from this surgery, doing nothing, no work, no driving, nothing, even the infection of my incision controlled me.  The following week I would meet with a radiation oncologist who would discuss with me, the prospects of radiation therapy.  And it would have to begin soon.  I had not control in any of my life anymore.