Wednesday, April 1, 2009

How it started

So, my mom has been in the hospital in south central Kansas since Saturday night (March 28).

Two weeks ago, she visited Denver for a full weekend of moving (Thayne) and I noticed she was... er, yellow. Her skin was jaundiced and we all insisted she see a doc immediately. She went to her primary care physician who detected a mass in her bile duct that was blocking her bile from regularly leaving her body.

She made plans to see a gastroenterologist on Thursday, March 26 (I was 32 years and 7 days old that day; boy, if it hadn't of been for my birthday and Thayne's impending move, I might not have seen her until early May). 

Gastro man did a consult and scheduled an outpatient procedure called an endoscopic retrograde cholangiopancreatography (ERCP) on Friday. Click here for a definition of an ERCP. The procedure should, theoretically, drain the bile , but it didn't work. Safely scheduled for another try on the following Monday, she and my dad were snow-bound. It turns out the snow saved her life. She unexpectedly developed acute pancreatitis on Saturday (as a result of the procedure) and she was admitted into hospital land. Click here for more info about acute pancreatitis

So, gastro man scheduled a second type of outpatient surgery called a percutaneous transhepatic cholangiogram (PCT) for Monday morning. Click here for a definition of a PCT. Mom was put on IV (no food or drink allowed, yo!), and the pancreatitis stabilized through Sunday and Monday.

Monday's procedure was scary. We were notified that radiologists would perform the surgery. We third-degreed them all. Honestly, in today's healthcare, you have to be on top of each person who touches your charts. Radiology was confident, but none of us liked the idea of needles poking through my Mom's liver. Yet, we were pleased when they successfully weaved a very much needed catheter down through the bile duct (past the tumor) that allowed for internal and external bile dispersal. I'll refrain from details. 

Despite the surgical success, her daily doctor mistakenly put her back on soft foods. We thought she'd be dismissed on Tuesday, but that morning brought what appeared to be blood via the external drainage. The blood (or jello) subsided after an hour, but the pancreatitis was back. Promptly put back on IV, she was sore from the surgery and in pain from the pancreatitis. Tuesday was not good. The doctors barely showed face. Thankfully, mom captured the hearts of several nurses. They took care of her. And, her main doctor was a blessing a day later because she took note of mom's exhaustion and moved her to a private room. 

So here we are wondering what this mess is. You, too?

The mass is likely a klatskin tumor. Click here for more information on this type of tumor. It's near the top of her bile duct, in a very hard to reach place. 

It's an active tumor. Unfortunately, the people at the current hospital don't even have the surgical capacity to go in for a biopsy, so she has not been formally diagnosed, but everyone, including all the doctors, are very much operating on the assumption that she has bile duct cancer. Click here for more information about this rare type of cancer. 

This type of cancer is very rare and difficult to treat because of its location. Treatment often involves resection of the liver, gall bladder and many other nearby organs. The scariest treatment option, which makes me sick, is a liver transplant. 

We took action upon hearing the "C" word and immediately began researching the best of the best treatment facilities. Hence, Mom is headed to the Mayo Clinic in Rochester, MN, next Wednesday for 3 to 5 days of testing. They are the experts on this type of cancer and do nearly 100 to 200 transplants a year. Click here for more info about Mayo Clinic. 

Our backup hospital, Sloan Kettering in NYC, has also accepted her as a patient should we choose to go there. As much as we'd like her in Denver, the University of Colorado Cancer Center doesn't do our insurance. 

So, phase 1 is get her out of Kansas. Phase 2 is to get her hair colored. Phase 3 is to get her to Minnesota. I already booked us a suite to stay near Mayo.

As you all know, she's a ball of fire and everyone loves her. She's so funny... walking around in her little gown, she is so tiny. 

We're in good enough spirits, but this has been hard. It's going to be very hard for a while. Please keep us in your thoughts and thanks to every person who has provided us support. Leave comments for my momma as you please!!!

2 comments:

  1. Wow! I had no idea! I'm soooo sorry! Please keep us informed and I will have your Mom and all of you in my prayers!
    Love you guys!
    Jen (Barber=) your cousin =DDDD lol

    ReplyDelete
  2. All of us here in the beantown area are big Paulette fans and hope and pray for the best.
    She is of course the strong leader of a strong tribe and will be in our prayer's
    love from all of us

    jd (huzbo's dad)

    ReplyDelete