Paul's Heart

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.

“Oops.”

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.

Denial – Forget The Cliche’s And Jokes

As I explain the events of my diagnosis of Hodgkin’s Lymphoma, which occurred thirty years ago, I guess I should have mentioned something which might explain the importance of following these posts (in case you missed the first two, they precede this post – no others in between).  Hodgkin’s Lymphoma, while having a very high remission rate, is considered a rare form of cancer.  And it is that rarity that makes it difficult for many doctors to diagnose or even look for.  As I continue on with these posts, between my original doctor not knowing what to look for, along with a patient who never “saw the headlights of the bus about to run him over”, I am sure I am not the only patient to have experienced this struggle in my mind.

So, previously on “Paul’s Heart”, I mentioned about discovering the lump, being treated for the lump, and upon getting back to my regular routine, I was injured.

I went to that appointment that evening very confident that my friend sent me to someone who would not only understand my injury, but get me back to normal as quickly as possible.  I am not demeaning my family physician by any means.  This was strictly about getting back on the basketball court ASAP.

The doctor looked about the same age as my primary care doctor, and for the most part, everything seemed to go the same way as it would have with my doctor.  Weighed… measured… and then escorted into an exam room.  When the doctor came into the room, he shook my hand and asked me what he could do for me.

Me:  Well doc, I think I either pulled something or hopefully not, tore something in my left shoulder area.

He began to check me out, could see me wince in pain when he would lift my arm and straighten it out.  Perfect.  He would now be able to get me on the right path to getting this taken care of.

Doctor:  So, how did this happen?

Not what I was expecting.  I thought, you looked, you found, you diagnosed, let’s get moving.

Me:  I had this thing going on, and my family doctor told me to take it easy for a couple of weeks, take some medicine, and I should be fine.  I just went overboard when I went back into training, stupidly resuming with the levels and weights that I was at two weeks prior instead of adjusting.

Doctor:  What were you being treated for?

I am notorious for being super involved in my health care, and those close to me.  Admittedly I am much worse today with this attitude.  But as a patient, I want you to not only hear me, but listen to me.  My agitation level had begun to increase.

Me:  Um… I had this lump on the left side of my neck.  My doctor said it was probably a cold, gave me medicine for it, and it pretty much disappeared.  I mean, it’s still there a little bit.  But anyway, I hurt myself when I got back to the gym and was just stupid.

Doctor:  Did your doctor do any bloodwork?

Now I am getting annoyed.  I was there for a sports injury.  My lump thing was taken care of, not what I was at this appointment for.

Me:  Forget the lump doc.  I am here about my injury.

Doctor:  I just think you should get this lump checked out more thoroughly.  I would like to recommend you to someone.  I think you should get in to be seen as quickly as possible.

And on that note, I walked out.  Never to be seen or heard again.  Or so I thought.  The doctor had made the appointment for me, and upon confirmation via telephone by the referred doctor, I cancelled the appointment.  The doctor I had just seen did not even pay attention to what I was saying and why I was there.  I had a sports injury.  Enough with the fucking lump already!!!!!

I got a call the next morning at work from the doctor that I saw that prior evening.  He had heard I cancelled my appointment and was quite stern that I keep the appointment.  It was an approach from a doctor I had not experienced before, but somehow he got through to me (note – this similar approach is now used by several of my doctors to get through my stubbornness).  A new appointment was made for that evening.