My Husband and Cholangiocarcinoma – Part 2
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Hi Margaret,
Glad to here they are getting the ammonia levels under control. I hope they can get everything sorted out and he will be able to come home tomorrow. A $430 pillow????? Wow! It sure better do wonders.
Keep on kickin’ it and let us know how things are progressing.
Love & Hugs,
DarlaUpdate on Tom. He did have high ammonia levels but they are coming down as they are giving him something to make him have loose stools. When the liver is not functioning correctly it cannot filter out the ammonia (which can attack the brain and is very bad) so the only other way to get rid of it is to ‘poop’ it out!
Yesterday his kidney function was a zero, and today it’s back to normal so that is a good thing.
His bile drain tube is being exchanged today – the bile started growing something, so the infection is in the liver and they will have him on the correct antibotics later today once they figure out what ones will kill the infection.
He will most likely be released tomorrow……and the doc says that the 5 new ‘tumors’ that were found in the liver are not really tumors, but they are lesions caused by infection……so did he have chemo when it was not really necessary???? The infectious disease team will be putting their heads together to see what long term antibotic they can get him on so that he doesn’t keep getting the infections. The liver is becoming ‘used’ to the levaquin and that is no longer working.
The wound care team said they cannot do anything for his bed sore on his tail bone and that they can’t heal it. I WILL GET IT TO HEAL myself! Even if he has to have his bottom exposed to the air every hour on the hour! We are getting a ROHO PILLOW for him to sit on. At a cost of $430.00. REALLY? Are you kidding me. $430 for a pillow? That darn thing better work wonders!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Hi Margaret,
Sorry to hear that Tom is back in the hospital, lets hope that the docs can get to the bottom of this and that you can get Tom back home with you asap.
Sending over Tom’s way a ton of positive thoughts.
Best wishes to you and Tom,
Gavin
Thanks for the continued support! Just found out that his white blood count is over 30,000 (under 10,000 is considered normal). He’s had two tranfusions of red blood cells and is on constant IV Antibotics. I’m working today and he is patiently waiting for me to come…his words “I need my wife”…aww how sweet!
Hugs,
MargaretMargaret-
I hope the chemo is doing the job and there was no error on the readings! I also hope the blood and antibiotics get Tom back on track!!!
Stacey
Dearest Margaret,
Sending lots and lots of prayers your way.
Thinking of you and Tom.
Keep strong and keep kickin that cancer!
Much love
Andrea x
Margaret I am so sorry about your turn of events. Mis read tests! NO! As if we don’t have enough to contend with. I know you will keep us updated and in the meantime many thoughts and prayers from the valley of the sun where we have been having a cold streak to the colder Tundra! Take care!
Tom is back in the hospital. White blood count elevated and they are growing cultures to pinpoint the source of the infection. I suspect the drain in the liver. The Wound Team will be checking on the bedsore he has on his tail bone and how to treat that. Doc said I was doing good, cause it’s clean and not infected! And I want it to stay that way so I suggested that the wound team be consulted and give me some ideas on how best to continue treating it. Probably a Waffle Roll Pillow will be prescribed. That way he won’t have so much ‘pressure’ on his tail bone when he sits. He will be haveing an Ultrasound tomorrow and parentheses to drain the fluid off his abdomen.
He had a transfusion going when I left the hospital tonight, his red blood count was down to 7. Generally he gets a transfusion when it’s at a 9.
Once they get him on the correct antibotics and he’ll start feeling better!
Prayers are gratefully accepted. Lets keep KICKIN’ that cancer!
Oh, the best thing is that the CTScan revealed that the ‘mass’ in his pelvic area is GONE! Now I ask, was the previous CTScan read incorrectly? Was it read by the same radiologist who said his gall bladder was grossly intact with no abnormalities? (this was 2 years AFTER the gall bladder was REMOVED) Maybe this radiologist needs to go back to school?
I will be so upset if it was ‘mis-read’! I’ll be asking some questions tomorrow!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
I never thought I would be strategical about how to ADD as many calories as possible to food! Sour cream! Ice Cream! Whole Milk! Full fat and fatty cheese! Bring it on!! My dad lost 40 pounds up front and then gained 25 back before he has started losing again. We are down 12-13 pounds since his markers and liver function have jumped and I am doing my best! If I could transfer 20 pounds, I would!!! Like Gavin, I try and overfeed my dad and let him decide how much he needs to leave behind. I also go to the local bakery two or three times a week to try and entice him.
I need to check with my dad’s nutritionist, but there is an Ensure type drink, Dessert, or something, that is an amazing amount of calories but does not cause the problems that an all fat shake would…I have a pyloric ulcer, so too much fat makes me puke on queue! I understand how hard the balance is these days.
GOOD NEWS again today! Tom’s bilirubin level is down to 9! At last bloodwork it had come down to 17 – so it’s even better this time! His hemogloblin is also low, down to 9. His onc wanted him to have a blood transfusion after chemo today but he declined, so we go in tomorrow at 8am for his one unit of red blood cells. His onc does not want to wait until wednesday, so off we go in the am. I will of course eat a great breakfast at the hospital as they have a great cafeteria there and make the best omlets!
And he has gained weight! Yea for all the malts, poached eggs, pancakes, etc that I have been making him. He is up to 117 lbs! That is amazing! His onc is well pleased with his weight gain and so am I!
So, he will have a scan done in two weeks (I think) to see where those nasty little tumors are at, and also the met to the pelvic area. His onc is espically interested in that mass in the pelvic area to see if it has decreased in size. At this point she is not overly concerned with the 5 small tumors in the liver, only that mass.
So we are KICKIN’ that cancer big time and right now, I’m rooting for Tom to still be here in Feb. so we can celebrate our 10th wedding anniversary! My son and his wife got married 15 minutes after Tom and I did, so we’re hoping to be able to celebrate together next year just as we have done for the past nine years.
Go with God and KEEP KICKIN’ THAT cancer!
Margaret
All:
Tom has been eating MUCH better this past week. And just when he’s thinking about ‘giving up the fight’ we learn that his tumor markers are down to 120. Previously they had been 194. So, that is good news to some extent. He just does not like the ‘quality’ of his life and believes that the doc’s are only prolonging the inevitable (sp).
However, we continue to plod along day by day and I’m really getting creative in snacks, meals, malts, shakes, desserts and continue to encourage him in every way I can.
You guys are awesome and hugs to all of you.
Margaret
Kim,
You can add the unjury.com protein to soup. They have an unflavored one and a chicke soup flavored one. You just need to not heat it past 130 degrees.
I too love to cook and soups are some of my favorite things!
Hugs,
PamHi Margaret,
So many great suggestions here. Just wanted to add what my Mom tolerated when she was on the gem/cis combo. I will start by saying she was overweight before her diagnosis and was still big til the end. (She was actually quite upset that chemo didn’t make her more nauseas, as she was really hoping to lose some weight!) Boost shakes were something she always tolerated well. And soups and stews – they were comforting and warm in her belly. I LOVE to make soups, so I’d cook up big batches and freeze them in 1-cup portions. Soups are a great way to sneak in all sorts of goodies, including proteins, veggies, beans, even tofu. And toppings can add needed calories – shredded cheese, dollops of sour cream, diced avocado, etc. Wonder if you could add that protein powder to soups?
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