Always Fighting for the Love of My Life

Edward J. Demyan; Pancreatic Cancer Victim; Supported and written by MaryKaye Mackulin, who loved him.
RIP my sweet man ... 1963 - 2011

Saturday, March 19, 2011

One Year Ago Today This Nightmare Began


One year ago today, Ed drove himself to the ER at SouthWest due to the blinding pain in his middle back. The pain was so intense he couldn't even see straight. And so the nightmare began. Three day's in the hospital on a clear liquid diet so the pancreas could calm down - he was diagnosed with acute (well, not so cute really) pancreatitis. He was miserable, but, hope was presented as the physicians insisted that the small mass on his pancreas was "most probably" a cyst, not a tumor. Yeah, go ahead and make the Arnold jokes, "it's not a tumor"... But in fact it was, and it was a mean one.

3/19 - Ed is admitted to SW for 3 days with acute pancreatitis. Gastroenterologist (GI) asks Ed on Sat. 3/20 what Ed's personal internist thought about the mass on his pancreas? Back in Aug. of 2009, Ed had passed a Kidney Stone and the mass was identified on the scan? Um, Ed and I just kinda looked at each other and were like "What The........." His internist never disclosed that information to Ed. So, what could have been caught in a much, much earlier stage of cancer was not. I truly hold that man responsible for giving Ed his poor outcome by not telling him about the "mass". His reponse to Ed when Ed called him from the hospital, He didn't think it was anything to worry about. I AM HERE TO TELL YOU - ANYTHING ON YOUR PANCREAS IS SOMETHING TO WORRY ABOUT! If you have a doctor tell you this, get another doctor - go to a GI guy or specialist, but fight for yourself, be your own advocate!

3/30 - Ed has an ERCP (scope down his throat to look at the tumor (oh, my bad, they still were insisting it was a cyst)... No biopsy done, just watching it for now. Surgeon looks at results, does not like what he sees and tells Ed surgery is not an option yet.

4/27 - Yes, an entire month later, ERCP #2 - this time they take fluid out of the tumor, report comes back with high levels of pre-cancerous cells in the fluid. This is really bad news.

5/14 - 2 weeks later, ERCP #3 - solid material is removed from the tumor, they test it right then and there, they do it I believe three times to be sure - I am the last person in the Lakewood Hospital atrium and it is scary as crap. Dr. comes out to tell me Ed's tumor cell marker (CA19-9) is the highest he has seen at 25,548. He has stage III pancreatic cancer that is border-line resectable (cannot have surgery) because it is attached to his 3 main arteries/veins (portal vein, superior mesenteric and celiac trunk).

On June 3, 2010 Ed started his chemo - And, since then, you guys know the rest of the story.

So, we bowl tonight for the last time this winter, which means spring is here - well, we can hope anyway!

Peace Ed & MK
PS - I don't have spell check anymore on my blog? So, it will not be as awesome as it used to be, I usually don't catch my own type-o's and I am a terrible speller.


  1. I'm just throwing this idea out there...

    I wonder if misleading a patient and their family into thinking things are better than they are when a diagnosis is first made actually buys the family more quality time before the treatments are started. ...or, maybe it gives doctors more credit than they have earned?

    Is it possible that doctors try to buy more "peaceful" time for their patients by stalling telling them about a bad condition so they can get a few more months of "normal" times before chemo and the like is attempted? I think when that is done it called "watchful waiting".

    However, I don't understand why the first internist didn't tell you about the mass, unless it had something to do with knowing that watchful waiting can sometimes give a better quality of life than instant, intense treatments that are no guarantee of anything.

    If a person is diagnosed with prostate cancer and is told they can live another ten years if they get radiation particle beam treatment, or, they can have the prostate removed and they may probably live longer than ten years, the answer seems obvious that someone might want the surgery.

    But what if they die from the surgery? What if they have the surgery and still only live ten years but have additional problems related to the surgery? What if they have the surgery, live another 15 years, but have some complications from the surgery that constantly reminds them of their surgery.

    In my opinion watchful waiting is both a hopeless course of action that ironically may actually gives the person the best quality of life for the longest time before drastic measures are taken to preserve their life. If the drastic measures are taken earlier, they may extend a person's life, or they may not, while depriving them of a quality of life as well.

    Being happy is probably one of the best treatments against cancer, and you two seem to have that part down very well.

  2. Dear Poster, great comments, makes sense, however, with the pancreas - time is too important to play the waiting game. Other cancers with more proven treatment methods, maybe, for the pancreas, you CANNOT wait. That is my opinion, but I truly enjoyed your post. Quite well written and logical! Tx, MK


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