My Husband and Cholangiocarcinoma
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Lainy: Tom is going to get a new ‘pee pee God’ Too! Loved it and yes it did make me smile….actually I laughed out loud or LOL as one would say.
Darla: Thanks, and this lady will be filing a complaint! That urologist is not a ‘pee pee God’ but he thinks he is!!!
Night ladies!
Margaret
Margaret,
I too am sorry to hear what you and Tom have been expreriencing and can totally sympathize as Jim & had a lot of those same experiences. At the time I was only concerned for Jim’s well being, but did do my share of registering complaints where warranted after the fact. Yes, when it rains it pours, but come here & vent all you want. We all understand and are willing to listen. My thoughts & prayers are with the two of you. I will be hoping to hear better news from you soon.
Lots of hugs & love for both of you.
Darla
Oh, Margaret, I am so sorry for what you both are going through. Yes, when it “snows” it “avalanches”. Teddy had to have his ureter stented 1 1/2 years ago as the new tumor at the time pushed the right ureter closed. He had a urologist who shall we say left a lot to be desired. I switched and now we have a real Pee Pee God! Hope I made you smile. And hope to hear better news tomorrow.
It never stops does it? Tom had another visit to the ER on Sunday night, from 11pm to 3am… extreme pain that Vicodin did not touch so off we went to the ER. A CTScan revealed (finally) the kidney stone that was originally found on Dec. 4th. His right kidney is swollen and inflamed, and the radiologist took a second look at the ctscan and found the stone that they couldn’t find a month ago!!
So today went back to the hospital for surgery, they lasered the stone from the inside and put a stent from the kidney to the bladder and the poor man now has a foley cath for the next 5 – 7 days (he says it’s only going to be 5 days!).
He is getting so skinny and has no muscle left anywhere on his body. This is so sad and so very hard to deal with. I can handle the flushing of the bile drain and I can handle the draining of the foley cath bag and switching from the ‘day’ bag to the ‘night’ bag, but how does one deal with watching someone they love just waste away to skin and bones? That is the hard part. (sorry, I’m just venting here but feel the need to do so)
Then you have doctors that come into the room and take a look at his external bile drain bag, grab it and say “What the heck is this and why is it here” and kind of try to toss it to the side. I was ready to kill him and if Tom hadn’t been in so much pain and needing to get that Kidney stone taken care of I would have decked him!
I will be filing a complaint with the hospital about that urologist as he was very rude. No one explained to either Tom or I as to why he needed to have a foley cath for 5 – 7 days. The doctor did not come and talk to me after the procedure. They said it would be an hour and I missed the doc by three minutes (I was back in the waiting room after 50 minutes) and his comment when I had the waiting room person ask him to come talk to me, his comment “I did my duty I was there she was not”……what a jerk! I don’t think he will be taking the foley cath and the kidney stent out, I will be talking to Dr. Neal (my urologist) to have him take over the case. At least he has compassion! (this was the doctor that we were supposed to get and somehow we ended up with this moron)
Ok, I’m done venting now! When it rains is pours eh?
Go with God
KEEP KICKIN’ THAT cancer.
Love,
Margaret and TomJanet:
I’ve accepted you as a friend on FaceBook! Thanks. So happy to hear about your dad’s surgery. One thing that I would suggest in his case is to discuss chemo with his doctors. Tom did not have that after his resection and now all of his new cancer doctors are saying that if he’d had chemo after the resection (even with clean margins) he may not be in the situation that he is in today with a reoccurance.
Prayers are coming your dad’s way from Wisconsin.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Hello Margaret, My Dad is fighting the good fight too! Diagnosed in late November, told he was inoperable. Had stints put in, then an external stint after a major infection. And the best news….2 days ago he had a liver resection. His wonderful surgeon, Dr. Hemming in San Diego, thinks he got it all with clean margins. Still waiting for confirmation from lab results. He’s still in the ICU, but doing good. You and Tom just keep on kicking! Know that I’m right there beside you cheering you onward.
Janet
Hi Margaret,
Pink is indeed a nice colour. And hearing that Tom’s tumour has shrunk is excellent news, good stuff! I hope for some more good news after the scans and I hope that the docs are able to get the stent in.
My very best to you and Tom,
Gavin
Margaret….Pink sounds so very good. On to a fantastic and upcoming CT scan and the much awaited biliary stenting.
Best wishes,
MarionLainy, Thanks! We are managing to keep warm over here in the ‘Tundra’ More cold coming though. -20 in the forecast….brrrrrr…however soon I won’t have to go out into the cold – almost set up for work at home…just waiting on the ‘work’ computer!
Don’t you just love the good news that people are getting these days? I think that with more cases of Cholangiocarcinoma and better diagnostic tests and doctors gaining knowledge is this cancer is the reason. But whatever it is, I’m hoping to see more of this in my lifetime.
Margaret
Hi Margaret and Tom. What great news. It seems that lately we are getting more good news days than we used too. A great sign. Keep up the good work and don’t freeze in the Tundra.
All:
Another phase in our journey to KICKIN’ this cancer had ended. Tom now is the proud bearer of an “Award of Achievement”:
Be it declared that Thomas Lepp has completed the prescribed course of radiation therapy with the highest degree of courage, determination and good nature. We appreciate the confidence placed in us and the opportunity to serve you. We wish you well and take care. Staff of Radiation Oncology, Vince Lombardi Cancer Center.His radiation oncologist said today “This is the pinkest I’ve ever seen you!” (Tom was very jaundiced the first time he met Dr. Rhoady) and that the radiation would continue to work in his system for another three weeks, and the “Tumor has shrunk”! All wonderful words to hear.
We won’t know the exact size of the tumor until he gets his CT or PET scan (in 2 – 3 weeks) and we’re hoping that the Doc’s will be able to stent the bile duct in about 2 weeks.
Tom has told the Cancer clinic that if he sees their number on caller id he is going to answer and say “I’m on vacation and the checks in the mail” and hang up! (He still has his wonderful sense of humor!)
God bless you all for all your thoughts, concerns and prayers! I will continue to be a part of this site going forward.
Margaret
Hi Margaret,
Great news indeed! I hope the good news continues for you and Tom and that his stent placement goes well.
Keep kickin it and my best wishes to you both,
Gavin
Margaret….I am dancing and kicking along with you. Fabulous news. Keep it coming.
Best wishes,
MarionAll:
Just wanted to post the AWESOME news that we got today! Tom’s bilirubin level has come down, WAY DOWN, after his blood work today, his bilirubin level was at 9.9!!!! A week and 1/2 ago it was 22.7. I think Prayers and Radiation are doing the trick!
One more radiation treatment to go, then in 2 weeks they will be trying to stent the bile duct again. We’re DANCIN’ in Green Bay/Little Suamico tonight!
I only wish that everyone on this site would be able to share good news! Never give up!
Go with God and KEEP KICKIN’ THAT cancer.
Love,
Margaret and Tom
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