Paul's Heart

You Did Not Just Say That

Before I being, I want to take a moment and give a HUGE SHOUT OUT to fellow Hodgkin’s Lymphoma survivor, Barry.  Yesterday he announced his 55th birthday, and even more momentous, this year, marks his 50th year as a Hodgkin’s survivor.  Yes, as you can see, cancer does not discriminate when it comes to age.  Though I know many long term survivors with longevity similar to mine, I can probably count on one hand how many I know that I have hit this milestone.  And as is often the case, wondering how much time we still have left, seeing someone with twenty more years than me, gives me a higher bar to reach for in my survivorship.  Barry, for that, I thank you.

I have been recalling the 30th anniversary of my diagnosis.  Something I am not certain that Barry would remember 50 years ago, other than what his parents may have told him.  In my last post, I had finally accepted the diagnosis of Hodgkin’s Lymphoma, and now had to move forward with getting better.  Cancer to me at that point was only a death sentence.  I did not want to die.

After speaking to my grandmother about who her oncologist was, I made my appointment to see him.  And yes, as you can tell, I often use celebrity look alikes to give you the impression of who I was looking at.  Dr. Morrison reminded me of the actor Martin Landau.  And yes, he looked this old.  I had no idea why he was still practicing.  But, my grandmother was still alive because of him, so I needed him to not retire just a bit longer.

When he came into the exam room, I noticed much of the familiar conversation he was directing at me.  The only difference was, this time I was paying attention.  I was no longer in denial.

Dr. M stated that I did in fact have Hodgkin’s Lymphoma.  At first, he talked about treatment options such as chemotherapy, radiation therapy, or even a combination of the two.  In any case, back in 1988, he stated this to me:

“Hodgkin’s has a high cure rate, over 86% when caught early enough and I believe we have done just that.  But timing is important.  We need to get you “staged” (a term for just how bad the disease is) and then determine the treatment from there.”

Ok, I got all that.  High cure rate.  Need to deal with now, not later.  I had wasted enough time.  Get treatment.  Got it.

But then he said this to me:

“If you are going to get a cancer, this is the one you want to get.”

Even if you have not had to deal with a cancer before, I am sure you would agree, that to say if you were “going to get a cancer, this is the one you want to get,” is an awful thing to say.  That is like saying to someone who got stabbed with a butter knife, “at least it was not by a sword.”  The wound is a wound and just as deadly.  And so is cancer.

One thing I know is certain, I know of no one who has been diagnosed with Hodgkin’s Lymphoma, who has not been told this line, and not reacted in a similar fashion.  So now I have gone from hope because he saved my grandmother’s life, to “you pissed me off pal!” and now I am probably not hearing everything you are telling me that I need to know.

More bloodwork had been done, and just like the other, nothing was showing up that I even had a cold, let alone cancer.  All that confirmed that I had Hodgkin’s was a lymph node that had been biopsied, and confirmed.  Without getting too technical, a certain type of cell, called a Reed-Steinburg cell must be confirmed.  This cell is a large cancerous cell with more than one nucleus.  Without this biopsy, and in my case, not having any pain in the swollen lymph node, my original doctor really had no chance of diagnosing it as anything more than a cold.  Even if he had done bloodwork, it did not show Hodgkin’s.  Doctors do what they specialize in, and honestly, family practitioners back in the 1980’s and before, were not prepared how to look for this.  Big cancers like breast and skin, sure, but Hodgkin’s?  Not when less than 10,000 cases a year get diagnosed.  That is what makes Hodgkin’s so hard to diagnose.  Without that biopsy confirmation, it could be a cold, some other infection, even non-Hodgkin’s.

But now that Hodgkin’s was diagnosed in me, the next thing that had to be determined was how bad was it.  And if you are newly diagnosed, or were diagnosed five years ago, or even twenty years ago, in my next post, you will get to see the progress made in diagnose Hodgkin’s Lymphoma.  Fortunately for you, easier methods were found than the tortuous and painful methods of staging compared to simple scans being done today.

I have to wonder though, as my fellow survivor Barry was diagnosed twenty years further from me, would he say the same thing to me.

She Did Not Ask For This

***Before I begin this post, I want to apologize, unfortunately some changes have occurred by WordPress that is resulting in pop-ups and ads.  I have no control over this and I do hope that it does not prevent you from following this blog.

Thirty years ago, I was six months away from my wedding.  Thirty years ago, I finally had my world spinning the way that I had wanted.  A good job.  Someone I was planning on spending the rest of my life with.  Life was good.  That all changed with that doctor appointment.  After several denials, I was finally going to have to come to reality and accept that I had also just been diagnosed with Hodgkin’s Lymphoma.  This was going to be my future, and I needed to deal with it head on.

And that began with telling the most important person in my life, my fiance.  Up to that point, neither of us had even dreamed that this would have been a possibility.  Emotionally, I was drained from my conversation with my employer just an hour before.  Perhaps that was a good thing.  I might be able to better hold myself together as I tried to explain to her, well… I was not sure what to explain to her because at this point, all I knew was, I had cancer.  There was no Google back then, no convenient way to research what the Hell Hodgkin’s even was.  To be honest, if you knew details about a cancer, like lung, breast, or colon, it is because those were so deadly, and unfortunately, more common.

Not knowing where to start, we both sat down on the sofa in her living room.  I just blurted it out.

Me:  It’s Hodgkin’s.

Immediately she began to cry.  We both assumed what cancer meant.  She had previously experienced a boyfriend dying, and I could see it in her, that she was not thinking she was going to experience it again.

I “threw myself on the sword” and told her:

Me:  I am going to get through this.  But I have to be fair to you, you did not ask for this.  You did not ask to be dealing with this again.  I know what you went through before.  I want to beat this, but I might not.  And to be honest, our lives will never be the same.  Any dreams you had on how the wedding would go, or how our lives would be, I don’t think we will experience that.  I will understand, if you want out.  We will part as friends.  I will hold nothing against you if you choose to leave because I understand what you have gone through and do not want you to go through that again.

We sat on the couch in silence another ten minutes at least, her crying in my arms.  We never said a word during that time.  There was nothing more I could say.  I had nothing else to offer her, not facts, not even a prognosis.  All I had left to discuss  when the time came, was what I had to do next.

She finally lifted her head and looked right at me, her face now drowned in tears.

Fiance:  I can’t leave you.  We will get through this together and deal with everything else as it comes up.

Me:  What about the wedding?

Fiance:  We will deal with that as we find out more about what is going to happen with you.  What has to be done next?

Me:  I need to call my grandmother to find out who was her oncologist.  Clearly, he saved her life from breast cancer.  He will save mine.

I left my fiance’s home a short while later, after we broke the news to her family.  Again, you have to remember this fact, there were no cell phones back then, so I had to either call my grandmother from home, or go to visit her.

My grandmother was the only cancer survivor I knew.  She was done with her breast cancer two years prior and as far as I was concerned, her oncologist could do the same for me.  Her spirit through that fight was unbreakable.  In fact, as I talked to her, we spent very little time.  She got right to it.  She gave me his name, and phone number.  She then told me to call him first thing in the morning.  Which I did.

The 30 Year Detour

In retrospect, over thirty years, and over recent days as I reflect on the 30th Anniversary of my Hodgkin’s Lymphoma diagnosis, I may just have figured out what so many, myself included, what makes me tick.

Upon leaving the doctor’s office following his interpretation and opinion of the pathology report, that I do in fact have cancer, Hodgkin’s Lymphoma, my personality had already undergone a change in how I not only handled this situation, but how I would handle everything else that would occur in my life.  The average person when faced with diversity, often ends up engulfed in emotions which may or may not complicate what lies ahead.  But when I left the doctor’s office, I had a plan:  talk to my fiance, contact my grandmother, get to an oncologist.  Getting through this was not a choice.  I knew what I had to do.  And I believed I could.

As I drove to my fiance’s house, I drove by my employer.  I saw lights on yet in the office area, and knew that the owner was still in the building.  Impulsively, I pulled into the parking lot and walked to the rear of the building which I knew would still be unlocked.  I walked through the darkened hallway to the office area.

Jeff was still in his office as he was known to work late.  He took over the business for his family and was completely dedicated to their efforts.  He had his own family, but his priority was the company.  When his day was done, he would go home to his wife and children where I am certain he was a loving family man.  At work, he was a bit more mysterious.  I did not really know him to have a frequent sense of humor, mostly all business.  He trusted his employees to do their jobs, and do them well.  He would see to it that we were taken care of.

I stood at the doorway to his office, soaking wet from the brief walk in the rain from my car to the building.  He was not startled by my presence.  He looked up from the pile of paperwork he was looking through…

Jeff:  Is everything alright?

Normally there would be other questions why an employee would be present well after hours, but instead, my appearance besides the physical presentation, had him concerned.  And for the first time, I saw that side of Jeff.

I broke down several times as I explained to my boss everything that I had gone through, and now faced.  I explained everything that was ahead of me.  I told him I did not want to die.

While Jeff was not a stranger to me, still, he was not supposed to be the one that I shared this with first.

I continued on and then Jeff interrupted me as I took a drink of some water.

Jeff:  I want you to know, anything that we can do for you, we will take care of you.  I don’t want you to worry about your job, money, anything.  Just concentrate on what you need to do to get better.

And then something else clicked in my head, another new defense mechanism, which now I fully understand me.  Not sure why, and I am sure that is for a totally different blog, but for the purposes of “Paul’s Heart”, I now had something else driving me.  I needed to get better because I felt needed, valuable, a purpose.

Me:  Jeff, I want you to know, I am going to do as much as I can to miss as little work as possible.  I am not sure how long this is going to take, but I am not going to be a freeloader.  I want you to know you can still count on me just as you always have.  My cancer is not going to change that.

The best way to describe that, would be to say I felt immediate wind against my sails, giving me a stronger sense of what I needed, and planned to do.

We talked for a few minutes more, and then we both walked out together.  He would go home to his family.  I would drive to my fiance’s house.  Almost as if I had just gone through a rehearsal of what I was going to say, I had gotten through all my emotions with Jeff.  I would be better under control with my fiance when I talked to her.  I would be much more believable that I was going to be okay, face to face.