Dec 16, 2017 Latest post:
May 15, 2018
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I have been asked to start from the beginning for those who did not see my earlier emails.
November 1st started as a normal work day until I ended up being hauled away in an ambulance after a sudden acute pancreatitis attack. I actually thought I had food poisoning as everything started shortly after eating lunch…boy do I wish. I spent a solid week in the hospital having test after test after test. I fought to get out November 8th and not have to spend another 3 weeks in the hospital being tube fed and prepping for surgery. With my pancreas not producing enzymes I was not digesting foods and they put me on a super strict no-fat diet with pain management to get all the swelling down.
My first visit with pancreatic specialists at the U of MN was a very long day for us with more tests. We were shown a large necrotized mass on the pancreas that was "ripening" into a larger mass of fluid about the size of doctor's fist. Now I know why everything hurt so bad as it pushes against all my internal organs. Surgery was scheduled for the following week - unless something critical arose before then...either bursting the mass or a severe infection.
I also found out there's nothing I could have done to prevent the attack as I'm in that 30% of those with an unknown cause...never anything normal in my book but I'm thankful it wasn't something I did. It looks like this will be a long drawn out procedure as removing all the necrotized tissue can take 4-5 procedures. I’m happy to say they are all via endoscopy so no incisions involved yet. They put me on a much stronger prescription for pancreatic enzymes. Sadly, I discovered it is an outrageous cost with a co-pay of $2800. Ouch! I’m working on getting some sort of assistance with that as I can’t digest foods without them.
To date I have had 3 surgeries. My first surgery was to drain fluid and place stents from my pancreas to my stomach to give my pancreas a place to drain. Due to the large amount of fluid only one stent was placed. They also biopsied another cyst on the tail of pancreas. It's a long process we are not looking forward to but anxious for the end. This all came on so fast and out of the blue it's still somewhat shocking to me. I trust that I am in good hands with my doctors and the Lord on my side.
My second surgery came faster than anticipated on the morning of my birthday. Good news, bad news, good news. The really good...he spent well over 3 hours in surgery and was very confident he got everything out. The one stent was replaced with 3 plastic ones in graduated size to allow the holes to heal slowly in both ends. As it does each stent is pushed out until it closes on the last one. Sort of like stacking dolls with one stent inside another. That was my birthday present and to me a really good one. Need another CT next week to see if any more solids are hiding around a corner that need removing. Fingers crossed as I would love to avoid doing this 3 more times!
When my doctor found out it was my birthday he felt awful and took his time walking over to give us the bad news. The biopsied cyst wasn’t fluid as anticipated. Which explains the rush on the 2nd surgery. It came back as cancer. He wanted to talk to us in person and get the necrotized area handled ASAP. As soon as that heals over I’ll have surgery to remove the tumor. My next CT will include lungs to make sure there aren’t any spots on them that need removing. The tumor is sitting on the area that produces pancreatic enzymes so that is blocked and after removal I need to be on enzymes forever. Cha-Ching, ouch and not sure how we’ll afford that but still researching assistance.
Good news, it’s not the pancreatic cancer and is treatable. The tentative plan is surgery first then chemo. I am being treated by a team of the best specialists in pancreatic issues and have faith they will take care of me.