My Husband and Cholangiocarcinoma – Part 2

It appears that the roller coaster has begun again, downhill this time I fear. Tom’s PCP looked at his ‘numbers’ from his blood work on tuesday and wants him back in the hospital for 3 -5 days to get some fluids into his body and some vital nutrients as well, to help ‘build’ him up so he is not so weak. Tom has said yes, but will not agree to a feeding tube and wants another DNR in place once he is admitted.

As I walked by him tonight he said “Honey, I need a hug” so I gave him a big long loving hug. I know he is scared as he started crying. He made me promise that his little namesake Thomas E. Jaeger will always know how much his Papa loved him. I gently reminded him that between me and Tommy’s Mommy that he would certainly always know about his papa! And that every time I see Lil Tommy, I would be remembering his Papa too!

At this point, Tom is more worried about me and how I will handle it once he is gone. He is tired, his body is tired and he just wants it to be over because he feels it’s not fair to me. Hogwash! is what I told him. I married for better and for worse, in sickness and in health until death do us part….so he does not have to worry about how I’m handling all this. I’d rather have him here with me be it a day, a week, a month, a year or many more years to come. But I also told him it IS his choice and if he wants to give it up I will back him 110 percent.

I know that part of the problem is that his body is so worn down and he is getting weaker and that is weighing heavily on his mind. He can no longer do the things he loved to do. He wanted to get the garage all finished for me so I have all the tools I’ll ever need to do little projects. I promised him I’d get it finished and he’ll be able to look down from above seeing me do my woodworking projects that I’ve been longing to do. He really wanted to be able to get new carpeting for the house, but with a $4,800 ded, then 10% for the next $3,000, new carpeting is out of the question. I said that carpeting is the least of my worries, but I’m happy that he is still thinking about me.

I’ve never lived alone, so when God does call Tom home, that is the only thing I worry about. It will just be me and my kitty cat ‘Bear’.

I’m hoping that this is just a short roller coaster ride and that whatever the doctor is planning works and I get my hubby back home once again.

I’m also very grateful that my employer is so very understanding and I get the time off that I need to take care of Tom when these things arise.

To all of the CC Patients on this site: We Caretakers do what we do for you out of love, for no other reason at all. So please let us do it – let us help you whenever you need or want help. It is a choice we have made willingly.

To all of the Caretakers on this site: Thank you for making your loved one comfortable, for taking care of their needs even if it means forgetting about your own needs for a time. Thank you for being there for him or her, for doing the things you do every day for your loved one. We have all been through it, there will be more caretakers that will have to go through it and we all understand what a tough job it is. So KUDOS to all of you and a great big VIRTUAL HUG to each and every one of you! From one caretakers to all the other caretakers out there.

Love and Hugs to everyone. I will post more as I know more.

Margaret
“KEEP KICKIN’ THAT cancer”

That darn stubborn man that I’m married too took another tumble yesterday. Trying to straighten a rug on the floor of all things, while he was holding a glass of V8 (RED) juice. He fell backwards and of course got the red juice all over the white (now pink in three spots) carpet. I’ll keep working on trying to get that stain out. He hit his head on one of the kitchen chairs and lucky him did not break any bones!

And as for Aurora Home Health Care, I don’t care if they NEVER come to our house again. He was on IV Antibotics until tuesday of last week when the infectious disease doctor switched him to oral antibotics. Home Health Care was supposed to come out and draw labs that day to get a ‘trough’ level for the antibotic he was on. We figured they’d come out and take out the line going into his port. They never showed…so yesterday I had Tom call them to see if they were coming out to pull the line and we found out today that they’d discharged him from Home Health Care and they stated that they could not come out and pull the line. So, since the line has been unused for 7 days, we called his doc and he sent an order down to where he gets blood transfusions when he needs them and we had to drive about 30 miles round trip to get the line pulled. Needless to say I was not a happy camper. I called home health car and asked a few questions such as before you ‘discharge’ someone who you know was getting iv antibotics via his port – wouldn’t you first do a home visit and pull the line? Their answer “Yes”…they still have some questions to answer about that one. After the mistakes they made the first time we used them and now this little boo-boo that could have resulted in a blood clot or worse yet another infection…that agency will never come here again and I’m not done with them yet!

Go with God and let’s KEEP KICKIN’ THAT cancer.

Margaret

Thanks everyone! Today was an even better day! He stayed awake all day and even wanted to go out for a quick bite to eat. Ate 1/2 of his bowl of soup and all but two bites of his sandwich!

I think the crisis is over…but he still has antibotics to take for the next 9 days..and I WILL be flushing his tube EVERY day!!! I still find it hard to believe that some people with a drain tube into their liver don’t ever flush it…that is scary to me because once those holes in that tube get plugged with dried up bile, that is when the ‘bugs’ can become active and that will put the person down.

Sometimes being a caregiver seems like a ‘thankless’ job, but when I hear the doctors and nurses commenting that when Tom comes in for his tube exchanges, they know that when that bandage comes off the wound site is going to be clean and his skin is going to be perfect with no sores or breakdown of the skin under that bandage. They always tell him how lucky he is to have a wife who cares enough to keep his wound and skin so clean! Comments like that mean the world to a caregiver and helps to make it all worthwhile, cause I feel that I am really ‘making a difference’ to help keep Tom as healthy as I can, one bandage at a time!

Go with God and KEEP KICKIN’ THAT cancer

Margaret