My Husband and Cholangiocarcinoma – Part 2

Thanks everyone! And what a difference 24 hours on good meds makes. My hubby is back! Not that strange man who was here yesterday. There was some thought about taking out the external drain tube, but his IR was afraid of that causing complications over the weekend. So, it’s back onto a regime of antibotics for at least a week duration. I will be administering those meds, Tom will be released from the hospital tomorrow morning and we meet with Home Care Medical at 3pm to get all the meds and the schedule of how to administer them.

He will have his scheduled tube exchange on Monday as planned. 5 days before the tube exchange ane he comes down with an infection. At his IR’s request we started flushing the tube every other day rather than every day. Just goes to show you shouldn’t mess with a good thing and if it ain’t broke don’t fix it!

Today he was coherent and does not remember much of Thursday at all. So we have our KICKIN shoes back on again and will go another round with this dreadful cancer.

Tom is back down to 105 lb so I have to work on fattening him up once again!!! I’ve got a lot of tricks up my sleeves! Little does he know what he’s in for when he gets home….tee hee.

Once again I want to thank everyone for all of their thoughts and prayers, I couldn’t do it without all of you.

On the good side, both Tom’s son and daughter took it seriously this time and spent hours up at the hospital with their dad – I think the DNR order finally made them aware that their father will not be here forever and his condition is as serious as I’ve tried to get them to understand…at least I hope so.

Hugs, Go with God and KEEP KICKIN’ THAT cancer!

Margaret and SuperMan Tom!

Well folks, the roller coaster has started again. First Tom broke a verterbrate in his spine and after 2 weeks the pain was so intense that they increased his morphine, and then did a vertboplasty where they inject two needles into the verterbrate and ‘glue or cement’ the verterbrate back together. The pain is then supposed to get better. In his case it did not.

Tuesday of this week Tom was well enough to drive himself to the doctor’s office and was given some type of lidocane patch at a cost of $457.00 for a 30 day supply. Wednesday evening I noticed that something was ‘off’ with his balance and his walking. He’s been using a cane for the past 4 – 6 weeks, but was having difficulty Wed. evening. This morning at 4am he got up to go to the bathroom but his legs gave out on him and I had to help him the rest of the way. It took 10 min. to walk about 30 feet from the bathroom to the 4 season room.

Then he started talking goofy. Statements that made no sense, was really confused, uncoordinated, unable to walk or stand unassisted. I called his doctor and daughter. My boss insisted that I log off the phones and go be with him (I work at home). I’d left him in the recliner sleeping at 7:25 and by 7:50 when I got back to him, he was sitting on the floor in front of his recliner. He had no idea why he was on the floor or how he got there.

I called the doctor’s office back and 10 min later they called back and told me to bring him in. Got the wheelchair out and between his daughter and I we got him into the wheelchair, out to the car and then to the doc office (which is attached to the hospital)

When his doc saw him sitting in a wheelchair, being so unresponsive, he was as concerned as I was and started the process to get him admitted. It could be a number of things, Mets to the brain, ammonia levels too high, and infection in the liver, blood or elsewhere in the body. They took a chest x-ray, got a number of tubes of blood, specimen of the bile from his external bile drain bag and a urine sample and are running cultures on all. They started him on a broad spectrum of antibotics, cipro and flagyl which will help start curbing an infection (if that is what it is)

Because Tom smokes, I INSISTED that they put a nicotine patch on him. At 6pm this evening I left the hospital and came home to get some rest. I will most likely not be going to work tomorrow as I certainly want to be there when his doc does his rounds. Just prior to leaving the room, doc turns around and says “Just for clarification, you do want a DNR, correct?” The hardest thing I have ever had to do was say “Yes”. But if anything major were to happen and Tom’s quality of life were to be worse than what it is today, he does not want to live like that and he knows that I would most likely not be able to care for him if he needed round the clock care. For any of you out there who have had to answer that question, you know exactly how hard it is to say yes, but then again, it’s what I would want for myself as well. I’m not certain how much one man can take. He has lost the 20 pounds he had gained.

So if you can find it in your hearts to offer up a prayer or two for my beloved Tom I would greatly appreciate it.

Hugs to everyone.

Go with God and KEEP KICKIN’ THAT cancer.

Margaret & Tom