Re: My Husband and Cholangiocarcinoma - Part 2

Hi Margaret,

Great to hear that Tom is feeling better right now and as you said, lets hope that they got this sorted this time.

Best wishes to you and Tom,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret,
I know how these recurrent infection bouts can take the wind out of the sails. Let's expect that changing out the tube more frequently will end the cycle.

Grace and Peace to you both,
bob

Re: My Husband and Cholangiocarcinoma - Part 2

Tom goes in for a tube exchange tomorrow.......and I fell today and broke my right wrist today.  I have to go to an orthopedic surgeon to see if they have to 'pin' it or just put a 'real' cast on it.    Humm, this will be a challenge to flush his tube and change his bandgage daily

Go with God & KEEP KICKIN' THAT cancer!
Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

Oh Margaret - What a challenge. We'll pray for the best result for you and your arm so you can take care of your hubby. Is there someone else who can come help you with him if your arm is broken? Hang in there. I think home health can come in and do for Tom what you can't (if you can't). Best wishes coming your way. Blessings, Susan

Re: My Husband and Cholangiocarcinoma - Part 2

susan, the IS broken, and if necessary my neighbor lady will come help.
thanks
margaret

Re: My Husband and Cholangiocarcinoma - Part 2

OMGOSH Margaret! Wish I lived closer so I could help. What a fine how do you do. From now on when you are doing your kickin, you better be standing somewhere safe. Good luck on it, girl. Oh, wait, now I get it, you were cheering for the "Pack".

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My Husband and Cholangiocarcinoma - Part 2

Oh Margaret what next!  Sorry to hear about your latest set back, but I know you are strong and will carry on as you always have.  I am glad you have a neighbor willing to help out with Tom if necessary.  Don't try to be too strong, take the help that is offered if you feel it is needed.  You need to take care of you too so you can keep on doing your best for Tom.  I will be thinking of you and hoping for the best, what ever that can be.  smile

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: My Husband and Cholangiocarcinoma - Part 2

Hi Margaret,

So sorry to hear about your fall and breaking your wrist, this is the last thing that you need right now. I hope that your orthopedic surgeon will be able to do the easiest and quickest thing that will help your wrist here. And I hope also that Tom's tube exchange goes well tomorrow.

Thinking of you both,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: My Husband and Cholangiocarcinoma - Part 2

Oh Margaret....I am so sorry to hear of the latest incident.  Us caretakers forget that we may also be vulnerable to unfortunate happenings.  I am wishing for a quick and painless recuperation.
Hugs are coming your way,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My Husband and Cholangiocarcinoma - Part 2

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

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret, now that's enough!, You want attention? We will give it to you but stop with the hospitals! Say, I remember when I broke my ankle about 6 years ago and they would not set it for a week until the swelling went down. Tonight  I will say a special prayer for Jim!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My Husband and Cholangiocarcinoma - Part 2

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

Re: My Husband and Cholangiocarcinoma - Part 2

Glad to hear things are moving in a better direction. I was so lucky that I could work from the house at the time. I always think the old AS IF. As if we don't all have enough on ourplates someone always dishes up dessert! Hang in, girl.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My Husband and Cholangiocarcinoma - Part 2

When it rains, it pours. May you have an umbrella of peace over your life and a shower of blessings instead of hardship. I am so sorry you have so much added to your plate. God must think you are very strong. Keep leaning into Him and gain the strength you need for each day. Blessings to you and your family, Susan

Re: My Husband and Cholangiocarcinoma - Part 2

Good new today!  Tom's oncologist called to let us know that his tumor markers were down to 106.  (They had been 195).....so I'm thinking that they will be stopping Chemo for now.  We see his onc on Friday so we'll just have to wait & see what her game plan is going to be.

HUGS to everyone!

Margaret & Tom

Re: My Husband and Cholangiocarcinoma - Part 2

WONDERFUL!!  That's tremendous news!!

www.lifewithoutdiving.wordpress.com

Therefore do not worry about tomorrow, for tomorrow will worry about itself.   Matthew 6:34

Re: My Husband and Cholangiocarcinoma - Part 2

Hi Margaret,

This is great news, excellent stuff! Hoping that the good news continues when you meet with the onc on Friday.

My best wishes to you and Tom,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: My Husband and Cholangiocarcinoma - Part 2

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

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret, all in all it is good news. Tom gets a break and the only one you get is in the wrist! What's a girl to do. Where is your brother from in AZ?

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: 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

Re: My Husband and Cholangiocarcinoma - Part 2

Ah, man. He has to stay where its warm, too bad!  We are 1 hour from Apache Junction! Good luck on everything.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My Husband and Cholangiocarcinoma - Part 2

Tom goes in for another tube exchange on Monday the 31st of January.  It should be fairly routine.

Slightly funny story to share.  On 1/6/11 his PCP gave him a script for Morphine, 60 tabs.  Every 4 hours.  (which is about a 15 day supply and we were at day 22)

Since his medications had not yet come from the VA, his oncologist gave him another script for 60 tabs since he only had two left. 

He dropped it off to get it filled and the pharmacy said it could not be filled until the 19th of Feb. 

When I called them to find out why, they said the insurance said it was a refill too soon.  We figured out that the VA had most likely FINALLY refilled his morphine on 1/27/11. (It was ordered 5 weeks ago, but someone at the VA fumbled that one and it wasn't until after Tom called the VA last week Monday questioning as to why it had not yet arrived, then they checked on it and his doc at the VA finally got it ordered and they were putting a 'rush' on it)

Well, I knew that his morphine from the VA would not get here at least until Tuesday, so I asked the pharmacy if we could just buy them and not run them through the insurance, she said she'd have to check with our insurance to ensure that it was the VA that had filled them.  It was the VA Mail Order, so the pharmacy called back and said they could fill them under self pay and it would be $22.79.  Since he can't go for 4 - 5 days without his pain medication I told her we would be right down to pick them up.

I realize it's a controlled drug, and they need to 'control' it so it's not abused....but for heavens sake the man has cancer and so what, the insurance would deny him his pain medication???  Whatever!  So there is a way around it, just don't run it through your insurance and pay for it yourself!!!  Something to keep in mind if you ever encounter something similiar.

In general Tom is still feeling pretty good, he had blood work yesterday and his bilirubin is at 6.7 - so that is holding pretty steady.  His Alk Phosphate is elevated again up to 1258, (it had been down to 958) so I'm a bit concerned about that...and his amomnia levels are high again, so now he has to take a lovely cocktail to make him go to the bathroom.  The only way to get rid of high amomnia levels is to poop it out I guess!  You can imagine that he is just thrilled about that!

He has the tube exchange on Monday, a CTScan on Friday and goes back to the Onc next Monday to get the results....then they will be making a decision on Chemo.  And believe it or not of all the people going to Aurora BayCare Vince Lombardi Cancer Center here in Green Bay, there are only TWO people who have ports installed for chemo!  I found that very hard to believe!

And in three days, we start the 15th month of life, so when your doctor tries to put a timeframe on when your life will end, don't accept it!  Tom is a great inspiration and we never gave up!  If we would have listened to that oncologist I believe that Tom would have passed on within that 6 month time frame.  Instead we pushed for other opinoins and found out that there were things that could be done, and he is living proof that Dr. Sing was WRONG!  But is is scary that some people put so much stock in what their doctor tells them that many may just give up and do nothing and then yes, they may pass on as soon as their doctor predicts!

Go with God and KEEP KICKIN' THAT cancer.

Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret, some story, girl. So many incompetants around lately. Good luck on the tube exchange. Are you guys excited for Super Bowl? I am invited to a party where I am the ONLY Packer Fan. You know Teddy will be busy coaching!
Win or loose, how he would have loved this one!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret, I felt like I was following a soap opera and the writers were trying to see how many wrenches they could throw in to up the excitement! I cannot believe that you were still able to write with some semblance of sanity with all that you were coping with...you go girl!

Re: My Husband and Cholangiocarcinoma - Part 2

Good news about Tom! 15 months with more to go! He is kicking that cancer butt! Glad to hear things are better with you and your brother too!!
Have a great weekend!
Nancy

Loving my husband from afar.