Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “November, 2018”

21 Nov 2018

The Unhappy Thanksgiving


Before I start this post, I want to state clearly, that I do not have the hostility towards this holiday, or others, that I shared thirty years ago.  But you need to understand what was going on thirty years ago to understand why my Thanksgiving in 1988 was just so unhappy.

There is a reason you should not make your wedding day on your birthday.  Celebrate the two occasions separately as they were meant to be recognized.    Do not get married on a holiday, just as bad a thought.  It is a fact of life, bad things happen.  And if it is tragic enough, or at best, critical, the date becomes a constant reminder of a time that you would rather forget.  A divorce on your birthday or the birthday of someone close to you, a severe auto accident on a wedding anniversary, a death on a holiday, what was once a memorable and cherished time for everyone to gather, remains a dark memory every year that the date approaches.  I have my share of these moments between the Thanksgiving and Christmas holidays.  But this time, back in 1988, evidently was finally too much for me to look past.

Even with my denial aside, I believed 100% that I was dealing with an injury, that all seven doctors who had seen me previously had to be wrong (perhaps I should have gone back to my original doctor, after all, he knew me best and would believe me), I now had a pending cancer diagnosis ahead of me.  My fiance’s birthday had just past (see what I meant about events on a birthday or holiday?) and now the two of us would have to get through the holiday weekend.  A major task considering neither of us had told anyone else what was going on with me, nor did we feel this was the appropriate time to bring everyone down.  After all, what if the doctors were wrong?  I would have worried everyone for nothing.

So instead, the two of us sat fairly silent and solemn at the different Thanksgiving tables (my family and hers).  It was fairly unusual for me to be quiet, let alone both of us, but really, with what was on our minds, we definitely had nothing to say.  Everyone else had made up for our silence with their own conversations, not realizing that my fiance and I really were “lost” in a world, somewhere where there was no holiday that was being celebrated.

We still had the entire weekend to get through before I would find out the results of the biopsy.  Thanksgiving weekend was a long enough weekend without this on my mind also.

**** side note – I would spend the next two years dealing with my cancer, and the emotions that came with it, especially during the holidays.  In years following, my feelings toward the holidays had not improved.  I tried.  I really tried.  But not until my daughters came into my life, would I actually even attempt to recognize the holidays again, especially for their sake.  I get through these holidays now, for their sake.  And because I know that it makes people feel good to wish “Happy” this and “Happy” that, I do say thank you, and offer the same back.  But in my heart, it is not that happy a time for me.

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20 Nov 2018

The Difference Between Stubbornness And Denial


I got a few comments about my recent posts, following the days leading up to my diagnosis of Hodgkin’s Lymphoma, which is approaching 30 years on Monday.  All of them simply put, referred to me being “bullheaded”.  Was my denial of where EVERY doctor that seemed to have a hunch of where this was going, that strong?  Could I have been trying to “will” the bad thoughts away?

I was twenty-two years old.  I would describe my childhood as rough, not something I would want to repeat again.  My early adulthood did not start off too smoothly either with bad choices and bad habits.  But then I met someone who had changed all that for me.

Finally things had turned around for me.  Six months after we had been dating, I decided that I had found someone that I wanted to spend the rest of my life with.  Together she and I would do so many things with each other, experience so much, and do a lot of travelling.  She had not only shown me what life could really be like for us, but wanted to make that journey together.

We started making plans about two months before I was diagnosed, big plans.  I will not go into details because they are part of future posts of this 30th Anniversary thread.

As far as the denial was concerned, in 1988, cancer was still portrayed as a death sentence.  Personally, my paternal grandfather died from lung cancer, or complications thereof.  Later in life I would find out my paternal grandmother had cancer of the gall bladder (another post to come later).  On the television, you would only hear of celebrities dying of cancer.  You never heard of those who would survive.

But the truth is, I knew at least two survivors, but the fear and denial of my own suspected path hid those from my recent memories.  My step-sister had battled aplastic anemia in the late 1970’s.  More recently to my diagnosis, my maternal grandmother had beaten her first cancer, breast cancer, just two years earlier.

Was I denying the possibility of having cancer, because when it came to cancer, you only thought of the big ones… breast, lung, colon?  Other lesser known cancers, such as blood cancers like Hodgkin’s Lymphoma may not have been thought of so much as a cancer.  But guess what, a cancer is a cancer, whether it is in the blood or a solid tumor.

Was I angry at my body for betraying me at the best time of my life after twenty-two years?  It had not right to do that to me.

Was it the loss of control that I abruptly began to experience?  All of a sudden, I was having strangers telling me what to do, when to do it, where to go to have it done.  I no longer had any say.  Even as I protested as strongly as I could, I felt like I was losing grip.

Yes, the denial was that strong, and for many reasons.  And I am grateful for all of those professionals who did not give up on this stubborn jackass.  But that is what made them the best that they could be in their field.

As for me, as my current family doctor of nearly 30 years will confirm, I am still that stubborn jackass when it comes to my care.  But it has been my many experiences with my health over the years, that qualifies me to be a part of my treatment team when it comes to issues.  My doctor knows that she will convince me of what I need to do or have done.  I just make it a challenge until I have all the answers I need to make the decision to accept it.  And my friends and fellow survivors too – this jackass appreciates all of you.

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19 Nov 2018

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.

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