My Husband and Cholangiocarcinoma – Part 2
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Margaret, I can relate. I used to change and clean Teddy’s extrenal drain. If anyone had told me even 5 years earlier I could do that, I would have said they were crazy. Amazing what we get used to and become pro’s at when we have to. Keep up your good work, girl! Guess one way to look at it is Tom does not have to undergo anymore internal exchanges.
Tom had his tube exchange today but the doc could not get the stent in. He said there were 2 openings that looked positive, but both ended in blind alleys or dead ends…oh well, he’ll just have to continue with the external bile drain and I’ll just have to keep flushing it every day…and life goes on!
I guess it could be worse…there are a lot of things that I would NOT like to do, the flushing and the bandage changes are a lot easier than other things on a scale of 1 to 10 !
For now we’ll just have to continue to make liars out of those doc’s that said he’d be dead in 6 months.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Hi Margaret, You and Tom are an inspiration. Doug and I are right behind you, fighting all the way! Let’s kick some cancer butt!!
Hugs. NancyHi Margaret,
Your wifely talk does it again! Glad that the boxing gloves are on again and that Tom is coming out fighting again! Fingers crossed for a great scan result.
Best wishes to you and Tom,
Gavin
Margaret….I agree with you not focusing on numbers. At this point, this is all they are….numbers. Enjoy your camping and your grandchilden. Have a great time.
All my best wishes,
MarionAnd the Miracle Team hits the road again! You both ROCK! I am crossing everything for a Good CT Scan!
Had a couple of bad days, Tom’s Onc called on thursday and reported that his CA19-9 (Tumor Markers) are elevated up to 169. They had been 69. Then of course Tom was in a funk, severely depressed and said that he knows he is going to die, every little ache/pain was the “Cancer coming out, etc”. After 2 days of listening to him….out came the wifely talking machine again!!!!
As a team we have decided to NOT FOCUS on the numbers! But rather focus on what is important to him and us! Spending time with each other, doing the things we like to do, camping, spending time with grandchildren, more time with Lil Tommy (2 yr old). Although Tom said that he would not do any more chemo…after the ‘talk’ he has now decided to make the decision after he has his CTScan (In June) and listen to what the Onc recommends. I told him, he has two choices A) Do nothing and live out the remainder of his life, however long that may be OR
Put on his boxing gloves and do either a few rounds of chemo or radiation (doc’s choice) and prepare to be here for another 20 months. His response “To heck with 20 months, I WANT 20 YEARS!” (That’s my man!)I also gently reminded him that in Dec. ’09 when he was given 6 months we decided to fight and that has gotten us an extra 20 months and that he has had some bad days but for the most part he has had many more GOOD days!
So apparently our roller coaster ride has begun again and we’ve got our boxin gloves on and we’re going to starting KICKIN’ THAT cancer once again!
Go with God and KEEP KICKIN’ THAT cancer!
Margaret
Mgt
Thanx for sharing your story. This is a pretty scarey thing and hearing how everyone is dealing with there troubles sur ehelps provide hope. My sister is being seen by a onc at st. joe’s here in Ann Arbor ,Mi. He is an ok doc but i sometimes wonder about his attitude, seems to be lacking in hope. We did get a second opnion and it seems he is doing all of the things everyone else is doing so I guess he is ok. She will have no part of another doc. I check and recheck everything he says and I ask more questions than – wow. I am a med. tech so I do understand a bit and what I don’t I ask, ask ask!
Good Luck to Tom and you!!!! Prayers and blessings coming your way!
JackieMargaret and Tom….I agree with Lainy. You are the Miracle Team. The numerous postings are a testament to the incredible Cholangiocrcinoma roller coaster ride you have endured. And, the outcome is absolutely spectacular. Enjoy, enjoy.
All my best wishes,
MarionWOW! YIPEE ! Margaret and Tom the dynamic duo! The Miracle Team! The Mount Everest Climbers! The winning combination. Keep it going! Love, love this kind of news!
First I want to THANK all of you who added Tom to your thoughts and prayers! He just had an appointment with his oncologist who is so impressed with the outcome of his cancer.
His numbers continue to decrease from the very high levels that he was as back in December ’09. His bilirubin is 3.8 (3 and under is normal). His Alk Phosphate is 859, still high but much better than 1958 it was at a while back!
His oncologist’s comment was “Who would have thought that it would turn out so well back when we started seeing you as a patient!”
He is not scheduled for a scan until July. The tumor continues to SHRINK and we’re hoping that the Interventional Radiologist will be able to get a stent internally so Tom can lose the drain bag! He is not yellow at all except for a few traces of yellow in his eyes.
Both Tom and I want to thank each of you for your support, thoughts and prayers during the past and I will keep you all posted as things develop, good or bad!
Hugs,
Margaret and Tom
GO WITH GOD AND KEEP KICKIN’ THAT cancerTom is our Miracle Poster Man! That is such good news! Hope its warming up for you guys. Keep the Miracles coming!
We are continuing to KICK THAT cancer! Tom has his biliary tube exchange today and his Interventional Radiologist reports that the tube is only draining part of the liver and he feels that a lot of the bile is getting into Tom’s intestines because 1) His color is so good – barely any yellow anymore! (This is awesome) 2) The doctor can ‘see’ that the tumor has shrunk (And this is even better)
He will attempt to get a stent in next time he has a tube exchange. He did not want to attempt it today because he feels its a bit too soon and does not want to damage anything (bile duct) in the liver. He thinks that in another month he may be successful – and if the tumor continues to shrink he may have ever a more clear path to follow….YEAH! So lets keep on with all those prayers and meanwhile….
KEEP KICKIN’ THAT cancer.
Hugs to everyone!
Margaret and Tom
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