My Husband and Cholangiocarcinoma – Part 2

Lainy, my brother Bob is from Wisconsin (St. Germain), he was visiting my sister Mary who is in Apacha Junction (she & her husband go there every winter). Right now his car is in the shop with engine issues and he can’t leave until his car is fixed. So that is putting a wrench in the trip back…..

Margaret

All: We met with Tom’s Onc today and his numbers look great, although the tumor markers had been down to 88, but they are now holding at 106. She ‘wanted’ him to have a treatment (IV Chemo) but he declined, stating that he was feeling good and just did not feel like being knocked down again…she was OK with that.

So the plan now is to have a scan done in three weeks then make a decision to continue chemo or to just wait and see some more to see what this dratted cancer is going to do. He is gaining some weight back, he’s back up to 115 lbs. Yipee!

And a side note, I went to the orthopod and he stated “I don’t believe that the bone is broken. I think we can just take that cast off. You don’t have any bone fragments that are going to go floating around…..you can just wear this brace instead…” So he cut the cast off, and now I’m sporting a brace on the right hand. It still hurts terribly, but I can go back to work on Monday. That is a good thing cause else I would not have any FMLA hours left for Tom! And it appears that my brother Jim will be coming to stay with us for a few days until my younger brother Bob can get here from Arizona to help care for him. My plate will be overflowing, but then again, that is what family does for one another, right?

Go with God and KEEP KICKIN’ THAT cancer.

Margaret

All:

Just an update! My brother Jim is out of ICU and in intermediate care. He had to have another procedure to medicate the brain because of all the Neuro-spasms he was having, but the worst of the danger is over. He is still pretty sleepy and falls asleep at the drop of a hat, but that is OK cause they want him pretty quiet.

Tom went in and had blood work done on Friday. His bili is back down to 7 which is amazing. His alk phosphate and tumor markers are down from where they were 4 weeks ago as well. His oncologist has put chemo on hold for now, and he hasn’t had any now for over three weeks (this is good? I think?) He will have more blood work this coming friday and then more decisions will be made.

I’m coping quite well with my right arm in a cast, still off work as a full day of typing I will not be able to do! Not certain if they will allow me to have short term disability but I hope so cause otherwise I will have no PTO time left for Tom by the time I get my arm out of this cast, and frankly that would not be good. I do have FMLA for myself (just waiting for the paperwork to arrive) and if necessary I will go back to work….my boss has already said that she will come up with some things for me to do that don’t involve as much typing as my normal job. Typing one handed (trying to use the right) just does not cut it and the right arm/hand get VERY tired quickly.

Will post more as I know more!

HUGS!
Go with God and KEEP KICKIN” THAT cancer!

Margaret

Wow, when it rains, it pours. Wrist is painful & I have to wait till Thursday to get into the orthopedic doc. They want the swelling to go down before they will do anything.

Tom’s tube exchange went well, they are culturing the part of the tube that was in his liver because the bile had a foul order. Hoping that we caught it in time & there is no infection.

Then yesterday evening my 62 year old brother Jim, was taken to the ER by his son & after tests they identified a brain bleed & he was taken by ambulance to Theda Clark hospital in Menasha, Wisconsin, where they have a great tramatic brain injury center. He had a three hour surgery today to repair the aneurysm. Great technology there, they use a technique where they go in through the groin with a microcatheter, guided by x-ray imaging up into the brain to the site of the aneurysm, then small platinum coils are pushed into the aneurysm through the microcatheter. This is continued until the aneurysm is fully packed with coils, obstructing the flow of blood. An electric charge at the coiled wires end detaches it & the micro catheter is withdrawn. Blood clots around the coils, stopping the aneurysm from bursting. About 15% of brain aneurysms brust and are fatal within 15 minutes. God was watching over my brother Jim today! Although he is still not out of the woods, the next 24 -48 hours he still has a risk of Neuro-spasms (stroke like symptoms) which can affect his thinking processes and alter his demeanor. He will be in ICU for the next 2 – 3 days, and if all goes well will be released after a week. Prayers gratefully accepted from all my Changilocarcinoma family!

Next thing on the agenda is seeing the ortho surgeon on thursday and getting my wrist taken care of, and I did Tom’s tube flush & bandage change today with no problem, it just takes me a bit longer & he has to help a little bit—-teamwork!

By the way – a baby aspirin a day cuts your chance of a stroke or heart attack by 50% – so lets all start taking one a day!

Go with God and KEEP KICKIN THAT cancer. (HA, I do pretty good typing with one hand & using the mouse with my left hand)

Margaret