Paul's Heart

Life As A Dad, And A Survivor

Hey, I Was In The Middle Of Something


I have been going through my fifteen year old laptop, trying to extend its life, by getting rid of unnecessary documents and programs, and came across a few new things I plan on writing about over the next few weeks.  But for the purposes of my “schedule” with my 30th Anniversary of Hodgkin’s Lymphoma I need to do this post first.

The housecall.  Something perhaps not even many from my generation ever experienced, try explaining to your children that at one time, doctors would come to your house if you were too sick to go to the doctor.  Even better, preventing your germs from contaminating an entire waiting room.  I have been lucky in my lifetime, because I have had 3 primary care doctors in my entire life.  My first, practiced into his 80’s and until I hit my teenage years.  And yes, Dr. Backenstoe was one of those kinds of doctors.  Upon his retirement, I saw a different doctor for a handful of years, until he brought in a new and young partner into his practice.  She would be come my doctor and remains my doctor to this day.  And while I have never had a “housecall” from her, her skills, her knowledge, and most importantly, her care, are unrivaled as far as I am concerned.

Starting off the new year of 1989 in the hospital, recovering from my first major surgery, I really had no idea how things needed to be done, recovery, most importantly, my future.  At the time, my pain from the incision on my abdomen was finally tolerable, I was finally eating solid foods, and this particular Friday night, I was just watching some late night entertainment.

In particular, professional wrestling.  The WWF (as it was known back then), was venturing into “prime time” and major network coverage, expanding from cable programming.  My interest was legitimate, as there was a connection between myself and the WWF.  The WWF filmed its Saturday morning wrestling programming locally at our fairground agricultural hall.  My high school principal was brothers of the ring announcer for the WWF.  The WWF was getting more popular, and its exposure was making it even more popular.

So, from my hospital bed, I was looking forward to a new WWF program, called “The Main Event”, something that had also been tried on Saturday nights, but on this episode, a Friday night.  As the Royal Rumble was approaching (a WWF pay per view gimmick), I was following the story line between Hulk Hogan and Randy Macho Man Savage.  I was looking forward to tonight.  I was actually feeling kind of comfortable.  I had just eaten my dinner.  I was ready to just settle in for the night.

Then, a knock on my door.  The figure walking into my darkened room, not immediately recognizable, because he was well dressed, in a turtleneck and blazer, as he got nearer, I soon realized it was my oncologist.  Wow.  This was something I was not expecting.  Knowing he was of Jewish faith, and the time of the night when he came in, I assumed he was on his way home from synogogue, and out of the goodness of his heart, was just checking on one of his new patients to see how I was recovering.

I wanted to see my wrestling program, but I was so overwhelmed by the caring gesture of my oncologist.  He sat at the foot of my bed, directly underneath the television, which was turned on, but I had the sound turned down.  Okay, this was going to be difficult to pay attention to him, and the television.  But I was intent on concentrating on both.  After all, I did not want to be rude.

It did not take long to realize this was not just a “how are you feeling?” visit.  He grabbed my chart from the foot of the bed, and started reading it, which gave me time to catch some of the live action on the TV.

Doctor:  So, your report shows that your spleen was fully involved with the Hodgkin’s.  I want to begin chemotherapy as soon as possible once you are strong enough.

I turned the television off and directed my full attention to him immediately.

Me:  But, I thought you said that since I only had the one node involved, that even if the spleen was involved, I would still be a candidate for chemo or radiation.  With my wedding less than five months away, I need to get this dealt with right away, and do not want this dragged out for so many months.  I want the radiation.  Besides, you said I could be treated with that, and there would not be so many side effects  as I would experience with chemo.  I want to look somewhat “normal” for my wedding.

Doctor:  Radiation is a possibility, but I strongly recommend the chemo, perhaps even both.

Me:  My mind is made up doc.  I want to go through the radiation.

Doctor:  We will discuss this further once you are out of the hospital, perhaps see you in about a week.

And out the door he went.  I know the discussion we had before I had the surgery.  I knew what was at stake, and the conditions were perfect for what he told me.   There was nothing more to discuss.  I wanted to begin radiation therapy as soon as I was healed enough, and strong enough.

So much for the nice gesture I thought the doctor was making thinking he just cared about me to stop by the hospital… I got the bill for a “outside visit”, aka “housecall” a couple of weeks later.

I met with my oncologist a week after I got out of the hospital.  And I stood firm on my decision, I wanted to undergo radiation therapy.  He referred me next door to the hospital’s radiation department, where I would have an appointment with a radiation oncologist.  I would see him a couple of days later.  We were back on track with “getting this started quickly”.

I never did see what happened between the Hulkster and the Macho Man that night, or at least I do not remember.  But I remember the decision that I made that night.

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A Memory From 30 Years Ago I Will Not Forget


The last quarter of 1988 was one of the worst times of my life, though I really should not set the bar based on that.  30 years ago, I was facing cancer, Hodgkin’s Lymphoma.  I spent the last two months of the year, undergoing tests to determine just how bad my cancer was.  However starting 1989, was not going to be any better, because I was going to have to undergo one final diagnostic procedure, and it was going to be a big one, and recovery time was going to be an issue.  Up until this time, proudly, I missed very little time from work.  But this procedure was going to be much more extreme.  My memories of this time period are just as vivid today as they were back then.

30 years ago, actually a week ago, the Philadelphia Eagles visited the Chicago Bears in a playoff game, nicknamed “the Fog Bowl,” because of the strange weather phenomena that took over the stadium as fog engulfed and dropped into the stadium, making it nearly impossible for us to watch the game, let alone, the players to actually see what was happening on the field.  Today, 30 years later, the Philadelphia Eagles are again travelling to Chicago to play the Bears again in another playoff game, though no obscene weather is expected this afternoon.  But who knows?  No one expected that bizarre weather back then.

For the majority of my life, up until 1988, I was fairly healthy, only one minor surgery when I was six years old.  And already in 1988 I had received many new surgical scars, just to determine what stage of Hodgkin’s I was dealing with.  Now for those dealing with Hodgkin’s today, please, please appreciate the fact that you do not have to undergo this procedure, the laparotomy, to stage the cancer.  You get the PET scan.

What was especially frustrating for me, because I was more than aware of the concept of wanting to get this treated sooner than later, especially with my wedding coming up in five months, but if this was going to be the end all and determining factor of treatment options, why not just have skipped all of the other testing, and go right for this?  Of course, looking back, I can understand why now, but back then, it was just so frustrating.

For many of my readers who are long term survivors, this is deja vu for you, and for those who do not understand what exactly the laparotomy is, here you go:

There would be several biopsies performed through the 8″ incision on my abdomen.  My liver, some lymph nodes, and with Hodgkin’s being a cancer of the lymph system, the decision was made to remove my spleen.  Back then, the spleen was often deemed “unimportant”, able to live without, and to a degree, we can, I do, but it comes at a cost when it comes to fighting infections, and today, science knows this, and spleen removal is not done as often anymore because of those risks.

Up until this point, I had only one lymph node that tested positive for Hodgkin’s.  I was currently at stage 1.  Other biopsies and tests and blood work showed nothing.  Just as trying to play football in fog, getting the proper staging for me was just as difficult to do.  But just as there was a winner and a loser in that football game, my spleen was going to determine my outcome.

My spleen came back from pathology, fully involved with Hodgkin’s.  My staging changed from stage 1 to stage 3b (which meant there were symptoms with the staging.  The full diagnosis, staging, labeling, was “Hodgkin’s Disease, 3bNS”.  The NS stood for “nodular sclerosing” which is one of the types of Hodgkin’s classifying its aggressiveness, determining treatment options.

There was one thing I had to get through in the immediate moment however, THE PAIN!!!!!!  I had never had a major surgery like this before.  And now having been cut from my chest, just below my belly button, my insides torn apart to allow the biopsies, the pain was unimaginable.

As I continue through this anniversary journey, my memories are quite clear of what happened and how.

And though I am glad this scar is just that, a memory, it is still there to remind me of where I came from, and a reminder to all the new patients dealing with this diagnosis today of the progress that has been made.

And just as my body has healed from that surgery back 30 years ago, I am routing for the Eagles to be passed their memory of the Fog Bowl, and have my fingers crossed for a victory today to avenge that loss 30 years ago.

Merry Christmas To All


 

I do not recall in any kind of detail, the thoughts that went through my mind thirty years ago.  My fiance was insisting in my going to Christmas Eve service that evening in spite of me wanting to have anything to do with God at all.  I felt that my minister had spurned me, because he was too busy (of course he was, it was the Christmas season).  But I was really angry.  I had everything going for me.  I was getting married in five months.  And instead, I was facing something that had the possibility of killing me.

I did attend services that evening, candlelight.  Admittedly, it is one of the more beautiful services to attend.  But as the night wore on, my anger turned to tears, as best as I could to hide them from everyone around me.  No one else had known yet was I was dealing with.  But I found myself finally, perhaps not as tough as I thought I was, scared even.

Over the decades, I have gotten to enjoy so many more Christmas holidays.  And none could be more meaningful than those celebrated with my two daughters.

However, just as I experienced thirty years ago, the holidays are not always so joyous because for one reason or another someone may not be able to be with us, or perhaps is no longer with us.  Soldiers protecting us overseas or stationed somewhere other than close to home.  Distance apart from loved ones.  Tragedies.

I miss so many at this time of year, family and friends.  Perhaps none so more deeply than my daughters and my father.  While I will get to see my children during the holiday, it was Christmas-time that I saw the side of my father that I never got to see as a child, though in the role of “pappy.”  Not caring for the holiday at all because of what happened to my stepmother, he went out of his way, above and beyond to make sure his house was ready for when my daughters came to visit.  Finally at an age where they can understand what had happened, back then, all they saw was a joyful “pappy” and were all to willing to play with all the interactive  decorations that he put on display, knowing he would play with them.

I do miss my dad, especially right now.  I miss being with my children.  And I definitely miss that interaction between the three of them.  And I know I am not alone in having feelings like this, which I know can make this time of year very difficult for so many.

But I truly hope, that somehow, you can find a way, make a pleasant memory of this holiday.

To everyone reading this, I wish you a very Merry Christmas (and happy holidays to those who do not celebrate Christmas but rather celebrate the holiday season in other ways).

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