My Husband and Cholangiocarcinoma
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Dear Margaret, We are so sorry for this latest news. Wish there was some sage advise I could give you but I agree with your own words, “it is what it is and now we make the best of it”, well, paraphrased slightly. Please do not forget to take care of yourself through this as well. I know you will keep us posted.
Well, another twist in the road! Dr. Dempsey conferred with Dr. McDermott at UW Madison who reviewed all the scans, xrays, MRI’s and all the stuff from interventional radioloy from the 5 attempts at placing an internal stent in Tom’s liver.
Bad news all around…between the tumor and the radiation they feel that the bile duct is ‘destroyed’ and there is no possible way to place an internal stent. Per Dr. Dempsey about 75% of the bile is draining out into the external drain bag. They feel that he will have to have the bag for the rest of his life. Tom is basically looking at this as another death sentence. He is very depressed and does not want to live with this bag for the rest of his life. He knows that he needs the bile getting into his system in order to gain weight and feels that now it is just a matter of time….however before he went to bed he told me to bring him his anti nausea pill at 8:30 and his chemo pills at 9:00 (I kind of thought that he would not even want to continue taking the chemo but I was wrong)
Dr. Dempsey said that we could ‘shop around’ and get other opinoins but I’m certain that we would just be getting the same bad news no matter where we go. I know that he would not be up for any kind of major surgery such as getting the liver cut open again and somehow getting a stent into it that way, so maybe at this point in time it’s best to say “It is what it is” and live out the rest of his time and make the most of it.
Sorry to be sounding so depressed right now….and have I told you lately that I HATE THIS CANCER!
Love to all,
MargaretPippa:
No, not that I’m aware of. His ancestory is Belgium and German. His grandparents immigrated to the US from those countries, and he is not certain where his great grandparents immigrated from.
Thanks to all for the well wishes….things are going much better now that his infection has been smacked down!!!
Margaret
Margaret
Just curious – does your husband have Estonian background? “Lepp” is so very much an Estonian last name as there ever was one.
Best wishes to you both!Hello there Cherbourg. Nice meeting you the other day at the hospital. Hope you have a good day looking thru the “scope” at dem cells! If you see any cancer cells, smash ’em for me, will you. We got enough already!
All:
Isn’t it amazing what 4 days of mega doses of antibotics can do? Tom’s ER report lists his condition as Poor. On Wednesday I thought I might have to start making funeral arrangements. By Thursday I started to be hopeful and thought I could see some light at the end of the tunnel. By Friday I knew we had passed the crisis and Tom is home today! Yippee!!!
He actually had Entercoccal Infection – Enterococcus is a gram positive cocci, but is more like a streptococcus (gram positive cocci in chains) than staph (G+Cocci in clusters). It used to be classified as streptococcus D but has recently been moved to the its own genus, enterococcus. These are normally present in the body but when someone is in the hospital with open wounds they are more susceptible to infection.
Tom had surgery on friday of last week to try and place the stent in the liver, it was unsuccessful and they just ended up doing a tube exchange. With the entercoccus invading his system, by Tuesday he was pretty weakened and starting his downward spiral. We are back up top again and will continue our fight!
He’s back on his chemo regiem starting on Monday, on 14 days now then off 7 days. Has his CTScan on Monday. His doc said a CTscan will show her everything she needs to know.
We also learned that the Vince Lombardi Cancer Center meets every wednesday with a ‘Tumor Board’ and Tom is brought up and discussed every week. Pretty cool that my husband is helping all the doctors and oncologists and staff learn about Cholangiocarcinoma – knowing that his case may help others down the road is huge!
Smiling and dancin today and we’re still KICKIN’ THAT cancer.
Go with God and have a GREAT weekend.
Margaret
Tammy, please weigh in on your uncle’s condition. Is he also a “Tarheel”? Haven’t heard from you lately. Everything going along alright for now? Find your way – its there waiting for you to discover it.
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