My Husband and Cholangiocarcinoma
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Hello my dear Gavin….how are you and Mum doing? I sincerely hope you are now being kind to yourself. It’s been a pretty cool winter in the States this year. I feel so very bad about Haiti. (Speaking of weather) I was there about 35 years ago! It truly is such a poor country but a pretty country. The one thing that sticks in my mind is watching all the children walking to their schools in the morning. As poverty stricken as it has always been the children wore uniforms to school and I have never seen such starched and bright looking clothes, ever. It was amazing. Prayers go out to Haiti.
So, what are you doing to relax now? We too hope one day you can come visit!!!Hi Margaret,
My dad used to get the shakes as well. They just seemed to come on without any warning, last for a little while then just go as quick as they came one. We would just put the fire on and try to keep dad warm when he had them.
My best wishes to you both.
Gavin
Margeret,
Dad had same resection in October of 2007. August of 2009 he had a reoccurence and the oncolgist warned him the fight would be intense. He started in August on Chemo for 6 weeks, then 35 days of radiation, and now 6 more weeks of chemo. He is scheduled for his PET scan a week from today. We are hopeful that this treatment has nailed it. Dad has the shakes a lot too. We got him a snuggie and also a knit hat. Keep the head warm that will help him stay warmer. Congrats on your new grandchild. I was about 6 month along with twins when dad was diagnosed the first time. They were his first grandchildren. I pray for you and your family and hope everyday that they find a cure not only for this cancer but all.
god bless
kayMargeret,
Just a word of caution, keep an eye on your husband’s bloodwork and the blood that has appeared in the bag. I had a stent collection bag and went through heavy radiation on my Klatskin tumor, and as I was placed on maintenance chemotherapy my red blood counts crashed several times to the point I was hospitalized because of high CO counts. As a matter of fact one was so severe and happened so suddenly even after 4 packs of blood were transfused, I had to be airlifted to Toronto General Hospital to keep me ‘up and running’. I spent several times and more in hospitals over the blood leak before my transplant was completed. Surprisingly, it all went away thank goodness. Don’t get too alarmed, just be aware of trace blood and what may occur.
Fatigue after radiation, oh yeh. Its a common reaction and the body’s way of healing itself after treatment.
I hope you the best for both of you and keep coming back.
Margaret, it goes without saying that huge prayers are coming your way.
By the way I took Cipro a month ago for a UTI and it did nothing to help. I am going to try Levaquin next. Boy this is some kind of roller coaster ride, yes? And this too shall pass, and soon we hope.Ok, new DSL malfunctioned when I tried to post on here about an hour or two ago. I will try again! (In nothing else, I’m persistant!)
Tom had a case of the “Shakes” today and when he went in for radiation, they did his bloodwork a day early. They started him on another antibotic as they think he has an infection going on, low grade fever of 100.6 (not good) They wanted to put him on Cipro but that makes him sick so they put him on Levaquin which helped him the last time.
He has what appears to be blood in the drain bag and they also did an xray of the drain tube to check that out. They also are growing a culture of the bile that they swabbed from the drain tube to see if that is where the infection is coming from (hopefully NOT!)
He’s had a cough for the past few days and I think that maybe he has the start of Peumonia (sp?) so hopefully the Levaquin will kick it in the behind.
We have quite a prayer chain going on FaceBook, so if any of you on this site are also FaceBook users, I am on FaceBook and our prayer chain group is “Love and Prayers for Thomas Lepp”. My name on FaceBook is Margaret Seidl Lepp. Look me up and I’d be happy to become friends with you!
Thanks to everyone for their thoughts, concerns and Prayers.
Go with God and Keep KICKIN that cancer.Love,
MargaretHi Gavin,
I’m glad you are getting out from under the snow & ice over ther and I hope your Mum gets a chance to get out soon. We have had a lot of freezing cold & two major snows, but today it is almost 30 degrees and tomorrow is looking even better. I am not fooling myself into thinking this is it tho’ as I know we aren’t out of the woods yet. Yes, it is even cold in Florida. They have had some freezing & snow. Not good for the prices of fruit. I don’t think any of this has affected Marion either.
The weather all over has been really strange this year and now that devastating earthquake in Haiti. How sad. 
Everyone take care and my best wishes to all.
Darla
Hi Marion,
Here in Dundee the snow has pretty much all melted away, but we may get some more later tonight. Up north from us though they are still suffering with it a lot and the ski centres are doing a roaring trade. What we have now is all the slush which when it freezes at night again it gets really icy and dangerous. And it is still pretty baltic here, but not as bad as last week but still brrr!
I was watching a report on Bloomberg news last week from the US and they were saying that parts of the US had been hit badly with it, but somehow I don’t think that you would have suffered too much with it. Maybe the need for an extra jumper or so, but no snow boots! I also noticed that they were having trouble in Florida with the orange crops and frost!
We are looking forward to some warmer weather hopefully soon, as this has been a nightmare for us. Especially for mum who hasn’t been able to get out of the house since before Christmas due to the cold and ice.
I hope all is well with you.
Best wishes
Gavin
Margaret…..what wonderful news all around. Your employer deserves a big hug for accommodating you to work from home. The extra 45 minutes of sleep each morning already is a bonus let alone, the other benefits of being physically in the same environment.
Best wishes,
MarionHi Margaret,
Thanks for the update and it does dound like you are getting things sorted right now. I am keeping everything crossed for you and I hope Tom’s CT scan gives you both some good results.
My best wishes to you and Tom.
Gavin
Margaret,
It sounds like you are really getting things under control. This will also take some of the stress off of you. I will be thinking of you tomorrow hoping for the best results on the CT Scan.
Love & Hugs,
DarlaDear Margaret & Tom, that is such wonderful news as it sounds like they are doing the job!! Everything is moving in the right direction. Looking for good news from the CT Scan. Just the fact that Tom is returning to normalcy in all ways is fantastic! I can hear all of Milwaukee cheering right along with us.
Tom will be having more blood work on Thursday of this week. Keeping my fingers (and toes) crossed, praying that his bilirubin levels are starting to come down. He gets pretty fatigued after 5 days of radiation, saturdays he sleeps most of the day. Sundays are pretty good though. Sometimes I feel that he is ‘giving up’ and I try to stay positive for him. His feet are still pretty swollen, but compression stockings and foot massages are helping him to get some relief.
His appetite seems to be improving a bit. Some days he eats hardly anything but today he ate more than he ate all week. I’m hoping that is a good sign. He also seems slightly less yellow today than previously.
Still no signs of the dreaded side effects of the high bilirubin. No intense itching, in fact, none at all! No brain confusion, he follows along in all conversations, interjecting appropriate comments, etc. Even our daughter who is an RN is amazed. Not to mention his doctors! All this is good and is a positive note.
Two more full weeks of radiation, then three more days the next week, then a CTSCAN to see if the tumor has shrunk at all. His bowel movements now have color again (THIS IS GOOD) and it means that now some bile is getting into his intestines. A few weeks ago it was white, which means no bile is getting into his intestines (bad sign). We have quite the prayer chain going on Facebook, and I’m a firm believer in the power of prayer.
Once we know is the tumor has shrunk, then they will once again try to stent the liver bile duct past the tumor. If they get the stent in then he can start chemo which may make his sick, but we’re praying that will do the trick to get him into remission!
My employer is getting WORK AT HOME set up for me, so I will be able to be with him (although I’ll be here I’ll still be working) so that is another positive in our lives. He no longer has to be at home alone while I’m at work. They are coming tomorrow to put in the DSL line, and I’m thinking that within a week or so I will be working at home. Lots of positives there, no travel time to / from work. I’ll be here if anything happens with Tom. I can sleep about 45 minutes longer each day. I’ll be at home the minute my work time ends!
Keeping all of you other’s with CC and your caretakers in my thoughts and prayers!
Go with God and Keep KICKIN that cancer.
Love,
Margaret (and Tom of course!)
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