Paul's Heart

Life As A Dad, And A Survivor

What’s In A Name?

I do not remember much from my days in English Literature in high school decades ago.  But the one thing I do remember, is a line from William Shakespeare’s “Romeo And Juliet,” “a rose by any other name”.

My duck analogy is one that I prefer to use.  More current.

So, this morning, I was reading my newsfeed, when an interesting topic came across.  The writer questioned about doctors now using a term NED as opposed to telling a patient that they were in remission.  I questioned that I had no idea what NED had meant, though I took a shot, asking “does NED stand for No Evidence Of Disease?”

When I finished treatments for the second time, my oncologist said to me, “I don’t like to use the word ‘cure’, I just say ‘remission.'”  I thought that was an odd thing to say, because I remember participating in medical research fundraisers to “find a cure for cancer.”  Wasn’t that the goal?  To be cured of cancer?  Being in “remission” did not sound convincing enough.  Almost like, do you mean it could come back?

Imagine, I am now over thirty years passed my final treatment, and I am not supposed to use the word “cured?”

Then I thought, what if it came back, “perhaps he just did not want the liability, ‘hey, you said I was cured’ and then he would respond, ‘no, I said you were in remission.'”  It really has not meant that much to me either way.  Although, because of my health issues from my treatments, I have found myself stop referring to myself as “cured.”  I have been saying “remission” for years now.

But when I heard “NED” and possibly thinking “no evidence of disease,” I began to think, “wow, that is really a step backwards in the confidence of treating Hodgkin’s Lymphoma,” a cancer with a notorious high success rate with treatment.

Now I find myself taking an even bigger step backwards.  While no one can appreciate the progress in diagnosing and treating Hodgkin’s Lymphoma over the last many decades more than me, because of the post mentioned above, I find myself nitpicking “Hodgkin’s Lymphoma.”

I am not known for my political correctness, though admittedly, there are some things that will strike a nerve with me personally, and I try to deal with it on my own, without taking any form of pleasure from a person’s attempt at humor or satire.  But damnit, in 1988, I was diagnosed with Hodgkin’s Disease, not Hodgkin’s Lymphoma.  I tried to rationalize why this bothered me so much, and even, why was there a need to re-label what did not need renaming.  After all, the cancer is still the same cancer.  It has not changed.

Hodgkin’s Disease was named for Dr. Thomas Hodgkins, who discovered it back in 1832.

Ok.  His name.  He discovered several people with this illness of the lymph system.  But it was named a disease.  I have not researched thoroughly for when the actual word “cancer” was first used, but the concept of cancer can be traced back as far as many years B.C.  As far as the mainstream use of the word, I have no idea when it became prevalent.  Admittedly, I do not care.  I had Hodgkin’s Disease, a form of blood cancer.

But wait, that is another issue that some like to argue.  “Blood cancers are not real cancers.”  Yes, I have actually heard that stupid comment more than my share.  It seems some have a hard time accepting the fact that you do not have to have physical tumors to have something a cancer diagnosis.  Leukemia in its many forms, and various types of lymphomas, are cancers, cancer involving the blood.

Putting the train back on the track, I missed the moment that Hodgkin’s Disease was changed to Hodgkin’s Lymphoma, literally everywhere, even in the books.  It is still the same cancer.  Somewhere around the turn of the century, and I have not been able to see any reason as to why, but Hodgkin’s Disease was informally changed to Hodgkin’s Lymphoma.  Admittedly, lymphoma sounds less nasty than the word “disease.”  “Disease” would also imply contagious.  It was bad enough through most of history, people actually believed that cancer was contagious.

Maybe it being called lymphoma not a bad thing after all.  But I worked too hard to just be told “no evidence of disease.”  I earned the right to be told I am in remission.

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