Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Education”

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.


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.

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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