My Husband and Cholangiocarcinoma
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Hey, Margaret and Tom, can’t wait to see you and Tom’s shadow, the drain bag!!! You are so right, we tend to forget to be thankful for what we have.
Well, Tom had his procedure at Mayo today and although it was well over 2 hours in surgery, the stent was again a no go. Apparently the tumor has destroyed that particular bile duct, however on the flip side, there are two bile ducts that are getting bile through to his intestines…(which explains why he is only collection about 100ML of bile in the bag in a 24 hour period). During the CTscan when they injected the dye, the doc could clearly see the dye going into the intestines via these two bile ducts. However the dye only goes as far as the tumor in the blocked bile duct and apparently since the blood vessel is right there they don’t want to force the wire through….internal bleeding with that main blood vessel would not be a good thing. So for what it’s worth, we tried and failed…but now we will never have to wonder about the outcome (If we hadn’t tried)….
Tom will have the external drain bag for the rest of his life. In the scheme of things however, this is not the end of the world. Yes, it is a pain to have to have it, but it’s not as bad as a clostomey (sp) bag but it allows him to not be yellow and it keeps his bilirubin level almost normal.
So he and I have accepted it and will go forward for as long as we have together. It may be 2 months or 10 years, but I consider myself very blessed to have had the opportunity to have this man in my life as my husband. Sometimes one has to be thankful for what they have.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Hi Margaret,
I hope it all goes well for Tom today with getting the stent placed. I will keep my fingers crossed for him and hope to hear of a good result from you.
My best wishes to you both,
Gavin
Margaret, First I want to wish Tom good luck tomorrow. You will be going to Mayo and we will be going to the ONC to talk about Palliative Chemo and other things.
We are so EXCITED that you are able to join us at the Lake and hopefully Darlene will also. It is the best feeling in the world to meet CC family as you really realize you are not alone.
After 4 years on this site I am still not understanding why these stents are so hard to place. Guess it was because T never had a problem with his stents. He would go to the hospital and a radiologist would insert it. He had 2 external drainage bags.
Did I say we are excited! Yea!We are headed to Mayo Clinic tomorrow morning…this is our last try at letting the doc’s try to get Tom’s stent internalized. If they fail this time then “It is what it is” and we will just have to get a good supply of Tegaderm Film, 4×4 gauze pads and 10CC flushes and some antibacterial ointment…I’m praying for the internalized stent cause that would just make Tom so happy to NOT have that drain bag following him everywhere.
In the event that they are unsuccessful then at least we’ll know that the mayo doc did all that he could and that we gave it our best shot. And like I told Tom, “If the external drain keeps you fairly healthy and not looking so yellow, then we will just have to deal with it”
Looking forward to also traveling to Lake Waubeesee to meet Lainy and Teddy in late July.
Toss a few prayers up to that big man above for Tom.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret and Tom
Hi Margaret,
That sounds great that you can now work from home and I hope that this goes a bit to relieving some of your worries right now. I hope that new chair is comfy!
Best wishes to you and Tom,
Gavin
Margaret, I know the feeling. I work at home from 7AM – 1PM but am able to be with T all the time. Mmmmm no wonder I get crazy once in a while! But it’s nice to stay home, I can even work in my nightie if I want to. And yes, it is priceless!
FINALLY was able to start Working At Home!!!! It’s awesome and now I no longer have to worrry about Tom being home alone all day. Had to go a buy a new office chair this evening as only 8 hours in my old chair and I felt like an ‘old lady’ when I got up from that chair after work ended.
New Chair = $129.00 before tax, spending the day working at home = Priceless
No more worry about Tom being home alone day in and day out.
Go with God and KEEP KICKIN’ THAT cancer!
Margaret
M & T,
Good news back from Mayo Clinic, hopefully they will be able to follow through for you and get the internal squared away. They are supposed to be among the best for this, so you are in good hands. I’ll be there this coming week so I probably won’t be there when you are. Lets hope that they can get both of us squared away and on a better path.
Best of luck to you both.
Rick
Hi Margaret,
What great news indeed!I hope all goes well for Tom and that the doc manages to get that stent inserted. And also, what great news on why Toms arms are sore! All that digging must be building these muscles so it sounds like a great idea that you go and get more plants!
Keep kickin it and also keep diggin it!
Best wishes to you and Tom,
Gavin
Hi Margaret & Tom. I would say the 2 of you have kicked a touchdown!!!
That is great news. I always laugh to myself on this Board how we all cheer that someone is going to have surgery. Little do people know about our “peeps”. Keep the flowers coming, keep the digging tools out and keep your great attitudes going and it will all come out like the blooming flowers!All:
WE HAVE HEARD BACK FROM MAYO and we are heading back there for surgery on the 14th of June! (almost two years to the day from Tom’s original liver resection, how ironic is that?)
Dr. Edwards from Mayo clinic is VERY positive that he will now be able to get the internal stent into the liver! Please everyone say a little prayer that he is successful!
And, just thought that I’d add this as a side note. Tom mentioned the other day that his arms were really sore and he is wondering why….I pointed out to him that he ACTUALLY HAS MUSCLES in his forearms that I can see, rather than flabby flesh covered bones. All that working in the dirt planting flowers is ‘bulking’ up his muscles and that is why his arms are sore. I think I’m going out to the store and buying some more flowers for him to plant cause if that is what it takes, I’m doing it!
Thanks to everyone for all the well wishes since I have joined this site. You don’t know how much your moral support means to both Tom and I. I could NOT do it without each and every one of you.
God Bless!
KEEP KICKIN’ THAT cancer.
Margaret
Margaret,
As a newbie to this sight, I’ve been following your posts to catch up. What amazing courage and grace you and Tom have exhibited. We rarely have any control over the stuff which passes through our lives. However, we can determine how we will respond to it. Your responses have seemed to me to be heroic. Keep up the good fight!As for causes, I’ve sometimes wondered. I myself worked for the Boeing Co. in the mid sixties painting aircraft. I was young and invincible and though we were cautioned to wear proper protection, many of us often ignored wearing masks if we were doing a quick paint job. Many of the paints were epoxy based – nasty stuff. Also, we cleaned our equipment and the aircraft with MEK solvent and nearly bathed in it. We liberally washed our hands and arms in it to remove paint residue. Who knows…?
I will add you and Tom to my prayer list. It’s not so much that I believe in prayer as that I believe in a loving, living God who hears our prayers. Grace and peace…
bob
Thanks for the update Margaret,
I did not know of Tom’s history and it is nice to hear of origins or possible origins of this cancer. It may help others that could have been exposed to the same elements that might not be aware of the consequences.
I wish you all well in testing and getting the garden going. I am envious of the garden as I love to work in the yard, but don’t have that much time. I’d love to see it!
Take care and you all will be in my thoughts and prayers.
Linda Z.
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