Paul's Heart

I Finally Had To Tell Her

Recapping… unable to refute multiple 2nd opinions, I now had to entertain everyone’s opinion, except for mine, that I had cancer.  There was only one thing for me to do since no one would listen to me, and that was to prove them wrong.

Up until this point, I had not mentioned anything to my fiance about this wild goose chase the doctors were on.  She knew I was right, that I was injured, and the doctors just were either not listening to me, or just had no clue.  Every evening she knew the pain I was in.  At the same time, she had enough pressure on her planning a wedding that was six months away.  I had everything under control.

That Monday evening before Thanksgiving, I pulled her aside from her parents to talk privately with her.  I still was avoiding using the “C” word because, well… whatever was going on with my shoulder was not going to be cancer.  So, there.  I was not going to throw her into a panic.  Instead, I chose to explain it to her this way:

Me:  I can’t get these doctors to pay attention to the pain in my shoulder.  It’s there.  They can see me wince in pain when they extend my arm.  But they have this thing for some reason about this stupid lump in my neck.  I told them to stop worrying about it because the medicine was working, and the lump was shrinking.  But they want to do a biopsy on it anyway.  I don’t know what else to do since they won’t listen to me.  Maybe after they do this biopsy, and they see it has nothing to do with my shoulder, they will finally be convinced to look more closely at my shoulder.  The doctor got me in tomorrow.

I could tell from the expression on her face, there was no concern from her.  She knew I knew what I was talking about.  Things were going great.  I had a good job.  We were both so happy and preparing for the rest of our lives.  Just get this biopsy done and over with, rehabilitate and get that shoulder back into condition.  I wanted to prove them wrong.  I know my body.

I had only been inside a hospital one time in my life, and it was as a child.  I had “tumors” that were blocking my molars from coming up when I was six years old.  I do not recall much about the ordeal, other than reminded by a few pictures my mother took, showing a young boy in what resembled to be a bed inside a cage.  Evidently I must have had an escape plan.

But this was my first time as an adult walking into a hospital.  I went through all the pre-op procedures.  The surgeon, yet another doctor, came in to tell me what the plan was, to do the biopsy and how it would be done, and if I had any questions.

Me:  I did not hear you say anything about putting me under anesthesia.

Doctor:  Because we won’t be.

Me:  Whoa!  Wait a minute!  Yes you will be.  I want to be put out!

Doctor:  We do not use general anesthesia for a procedure like this.

Me:  Perhaps you do not understand me.  I am not letting you get near my ear with a knife, where I can hear everything that you are doing to me.  You are either putting me out, or I am out of here.

Doctor:  Mr. Edel…

Me:  I’m serious (as I start getting off of the gurney).

The doctor walked out of the room, and moments later, he and an anesthesiologist came into the room, now explaining to me what I would experience with the anesthesia.

I am not sure how long I was out, but the procedure was done.  The lump was out.  I was not feeling any pain or discomfort at the moment.  My fiance was sitting in a chair next to my bed.  Relieved that it was over, she gave me a smile, the same smile that attracted me to her when we met.  Now we would be able to get back to planning the wedding.  Now we could get back to planning our lives together.  The biopsy was over, and nothing would be found.  Just get my shoulder straightened out.

The surgeon came into the room.

Doctor:  How are you feeling Mr. Edelman?

Me:  Pretty good.  Ready to get out of here.

Doctor:  Okay, but first.  We did the biopsy and removed the whole lymph node.

Now I was confused.  Lymph node?  I had a lump.  Nobody ever said anything about a lymph node.

Doctor:  We closed up the surgical site with five stitches…

Me:  So now I look like Frankenstein had one of his electrodes removed?

The doctor did not respond to my attempt at deflecting humor.  I was not getting a good feeling.

Doctor:  We sent the node down to pathology where they will perform several tests on it.  Also, a frozen culture was done…

He had completely lost me.  Lymph node?  Pathology?  Frozen culture?  I was lucky if I knew how to spell them let alone know what they meant, just like… hematology.  Dammit.

Doctor:  The frozen culture indicates that you have Hodgkin’s Disease (now called Lympoma).  The full report is going to be necessary from pathology to confirm this.

Me:  Confirm it?  Don’t you think you should know everything before you tell someone they have cancer?  What the Hell is wrong with you doctors?  Why do you keep telling me I have cancer without having any proof?

Doctor:  We will send the results to your doctor as soon as we have them, and you can discuss your course of direction from there.

And like that, this grim reaper of bad news was gone.

For the first time in all this mess, the expression on my fiance’s face had changed.  Her look had gone from confident to fear.  We sat there silent waiting for my discharge orders.  I had no idea what was going through her mind at that point.  As for me, in spite of what I had been told, I had a shoulder injury.  This frozen section was going to be wrong, and the pathology or whatever was going to prove that.

The trick was for us to get through Thanksgiving weekend without knowing.  The results would not be back until after the holiday.

The Infinite Option Of The 2nd Opinion

*I am continuing on with my series of the 30th anniversary of my diagnosis of Hodgkin’s Lymphoma.

How the Hell did I go from having a cold, to getting hurt while exercising, to having cancer?  Who did this quack think he is?  He never even shook my hand, let alone examine me.  And he is telling me that I have cancer?  By just looking at me?

I went home that night to my fiance.  She was only aware that I had a doctor appointment for my shoulder.  And that was all she was going to know.  This appointment was nothing but bullshit.  I was not going to mention anything to her about the appointment, only that it was going to take time for my shoulder to heal.

The next day at work, my phone rang.  It was the doctor that had referred me to “The Fly” (as this doctor would forever be known to me now).  He wanted to set up a biopsy for the lump in my neck.  I flipped out.  I told him:

Me:  How dare you?  Who the Hell do you think you are to send me to a cancer doctor?  I have a fucking shoulder injury you asshole!!!  How many times do I have to tell you?!?

I must admit, this doctor had a lot of patience taking the verbal assault that he had, and did not need to.  Looking back, clearly he cared enough to fight for me, facing a curable cancer, if it could just be dealt with.

The doctor had arranged a second opinion with another doctor, not associated with “hematology”.  And the opinion came back the same, get the lump biopsied.  But to me, that was not good enough.  In my mind, I was not juggling denial over the obvious.  Not that it was all my fault, or perhaps it was.  All someone had to do was tell me, there was no injury to my shoulder and I would have no choice but to deal with this other issue.  Until that happened, I was going to fight for the diagnosis that I believed was the problem, and injury… not cancer.

Persistence versus stubbornness.  Which was going to win?

It took four more 2nd opinions before this doctor realized the only way to convince me I had a much more serious issue at hand.

He made an appointment at a sports medicine facility where I would finally have my shoulder looked at.  A scan and an x-ray would be done, and you guessed it, no injury.  Even now, I was still in denial, though no longer because I thought I had an injury, but I did not want the other doctors, all seven of them, to be right, that I had cancer.  But as the doctor at this facility put it,

Doctor:  Mr. Edelman, there is no damage to your shoulder.  You should definitely get that lump biopsied though.  You already know the worst case, but best case, you can confirm that the lump is nothing.  But there is only one way to do that.

Hodgkin’s Lymphoma has a high cure rate for several reasons.  But one of the main ones, is timeliness.  Dealing with it as soon as possible is a major factor.  Who knows how long this lump was swollen?  But I do know that I spent two weeks on a medicine for it, and had no just wasted over two weeks in major denial.  So it should not have come as a surprise, that the doctor I was originally dealing with for my “injury”, had already scheduled me for a biopsy the next day, the Tuesday before Thanksgiving, because he did not want me going through the weekend wasting any more time.

Well I Did Not See That Coming

To recap, found a lump.  Saw my doctor.  Took medicine.  Got better.  Then got hurt.  Then saw a new doctor who only wanted me to see another doctor.

My appointment was in the evening.  It was already dark, and rainy.  The office was on the other side of town from where I lived.  As I pulled up on the address, the sign on the front lawn had the doctor’s name under big letters, HEMATOLOGY.  At the age of 22, I had never heard of “hematology” before, although gave it some thought that it could be a specialty in sports medicine.  So, without giving it any more thought, I went inside.

Funny, I saw an elderly woman, and a few other adults much older than me.  But hardly anyone would fit the description of being an athlete or having any kind of sports related injury.  Again, totally naive.

My name was called, and I was led back to an office.  I was expecting an exam room, but figured the other doctor had spelled out enough about my injury, and this doctor was just going to talk to me about options for my shoulder.

In walked the doctor, best described as looking like actor Jeff Goldbloom, just as tall too, though everyone pretty much is tall compared to me.  He walked around his desk and sat down.  Without even a shake of my hand, he looked down at the folder in front of him, then looked up at me.

“Hodgkin’s Disease is one of the most curable cancers…”

I honestly do not recall the rest of the immediate conversation because I really believed he had the wrong patient.  I was here for a sports injury, not cancer.

I gathered my focus, and he was still talking about cancer.  And he was directing it at me.

Well, all of a sudden, it was not Jeff Goldbloom I saw anymore, it was the Brundle Fly.  And I was now experiencing worse than denial, because not only did I think the doctor was talking to the wrong patient, he had not even let me interrupt to tell him why I was really there.  My blood began to boil.

Okay, so I did not flip his desk over.  But I wanted to.

“DOC!!  Stop!!  You have the wrong patient!!!  I am here for a sports injury.  I hurt myself training.  I am not here for cancer.”

He just sat there looking at me, confused as I was, and yet, resumed his cancer lecture with me.  He told me how important that it was that I begin treatment as soon as possible.  Hodgkin’s treatments are most successful when the cancer is caught early enough.

I just sank in the chair because I just could not get through to him.  I DID NOT HAVE CANCER!!  I mean, what the hell!  He did not even examine me.  How the hell is he diagnosing me with something that will kill me.  I hurt my fucking arm!!!!  I don’t have cancer.

And then he said this to me, and it is one thing that every Hodgkin’s patient HATES, and I do mean HATES to hear, “the good news is, if you are going to get a cancer, this is the one to get.”

I got up from my chair, swung his office door open that it banged into the wall, and stormed out.  Got into my car and sped off.  He would never see me again.  And as for the doctor that referred me to him, when I got home, I looked up the word “hematology” in the dictionary, for you kids reading this, we did not have Google or Wikipedia back then.  “Hema” means blood, and of course “ology” would be the study of.  Hodgkin’s Disease, now called Lymphoma is a blood cancer.  Why would that doctor send me to blood doctor?  I screwed up my shoulder.  I was done with that doctor too.

Or so I thought.