So glad that I found you!

Hello Rena,and welcome to our extraordinary family but sorry you had to find us. I am so very sorry about your Dad and my only question is, has he thought about a 2nd opinion? To chemo or not to chemo is a tough one and sometimes takes days to make a decision but it really needs to be his decision. If he has trouble deciding he might ask the ONC what he feels his prognosis would be with and without the chemo. While we don't really believe in time frames the ONC can give a pretty educated guess. Ours was right on. I know your stress must be great since you are not in the same town and I hope your parents have family where they are. Please keep us updated on Dad and know that you have come to the right place.

Hi Rena,

Your story has really touched my heart.  The way you describe your mom & dad reminds me so much of my husband and I.  I lost him to CC 4 years ago and believe me, I do know what your mom is feeling and going through.  I still miss him so very much.

I have seen so many things change in the past 4 years.  There is more known now about CC than there was then and many new treatment options are available.  I am hoping your dad will do well with whatever treatment he decides on.

I am in Plymouth, WI about 2 hours from Madison.  I am sure it is hard on you too not being nearer to your mom & dad right now.

Please stay in touch and let us know how things are going.  My thoughts and prayers are with all of you.

Love & Hugs,
Darla

Thanks to everyone who posted!  You guys are so great!  Dad has gotten a second and third opinion.  My parents live in Central Ohio and are traveling to the James Cancer Center in Columbus Ohio for Dad's care.  So far his Dr. Has been great and he is receiving excellent care.  They are about an hour and a half from Columbus which is not too bad for travel. 

My mom is still struggling with it all and has a really rough week.  I am so worried about her.  Dad is still contemplating about whether to start chemo or not.  I do understand that it is a great deal to process and make that decision.  They met again with the oncology Dr this week for a consultation.  I will be supportive in whatever decision he makes.  My brother on the other hand is completely against chemo and would like him to try the herbal supplement route....which is began three weeks ago.  It has for sure been an education! 

My heart feels so heavy and my head is spinning.  I can not imagine how my mom is feeling right now!  I keep telling myself...one day at a time!

Hi Lainy!  So glad that I did think to have dad take a list of what what all he is taking ( turmeric, hemp seed etc) to his Dr. appts the other day and all was fine.  The hardest part for me is that Dad does not want to know how much time he has.  My mom says she is okay too not knowing.  I have to admit that it is making me a little crazy.  I know that his cancer is aggressive.  One question I do have is this....Is inoperable cancer that involves the portal vein, blood vessels and main arteries always considered stage 4 cancer???

I did have mom make an appt with her Dr a few days ago and she is now on an anti-depressant.  It of course has not totally kicked in yet, but I am hoping that it will help calm her nerves.  My dad really needs her right now! 

Dad can not seem to get warm at least a couple times a week.  Has anyone experienced this?  Even with several layers on and a warm blanket he is still complaining he is cold.  Dad has never complained of being cold prior to the cancer.

Thanks so much for all of your responses! 
Rena

Rena, P.S. I keep forgetting to tell you that I used to live in Milwaukee. We were practically neighbors.

Hi Rena,

One day at a time? Great way to look at things and I did that too with my dad and that helped us a lot! As to your dad and the chemo and his special diet, how does he feel about everything? I know you say your brother does not want your dad to do the chemo and would rather he stick with this diet, but I would say that as to diet or chemo/no chemo, my opinion is that it should be your dads decision to make. When my dad was diagnosed and he got his treatment options etc, I said to my dad that he should do whatever he wanted to do and that I would support him in whatever he decided to do. Just my 2p worth here.

Also just wanted to chime in on your dad saying that he gets cold a few times a week. When your dad gets that way, how long does he feel like that. Minutes, hours or what? My dad used to get bouts of chills and shaking that Marion has mentioned to you which is unlike what Lainy talks about. His chills used to come and go so it was not an infection that he had. It was weird and pretty frightening the first time that it happened to my dad. He would get cold and start shaking and this feeling would just come out of nowhere. Then it would stop just as quickly as it started. It happened every now and again and it was something that he got used to once he learned that it was quite common. Hope some of that is useful to you.

Hugs,

Gavin

Rena. Does Mom have anyone near her that can help if she needs it. If at any time Dad runs a fever of 100o or more when he gets the rigors he will need to go to ER. His ONC also needs to be told that the rigors and the nausea is happening as well. If Mom is prepared it may help her to be a little stronger. I used to put 3 blankets on Teddy then crawl on top. I always ended up having him go by ambulance as #1 the chills were outrageous and #2 he would get so weak from it that I couldn't hold him up and  #3 in ER here, you only get seen immediately if you come in by Ambulance .
I hope things stay calm now.

Hi Rena,
I'm so sorry to hear about your dad. I am new to this site but it is great to have found it! I was diagnosed in June with CC and was able to have a resection to remove the ducts, gallbladder and 60% of my liver. I have had those chills too a couple times. The best thing I have used every day since this has begun is my heating pad with an extension cord which I take every where. Both my husband and I are taking antidepressants that were prescribed while I was in the hospital. Chills with a fever need a trip to the doc asap. It is easy to get an infection in my experience.
I am from Ohio too, the Akron/Canton area. I am also still debating about chemo. I go for a 2nd opinion on the 26th. It is an individual decision, so whatever your parents decide is best for them. I'm glad to hear that he is trusting God on this. For me, I have complete peace, which I am sure comes from Him.
I hope your dad and all  of you can enjoy your holidays and just take each day as it comes.
Best wishes,
Laura

Rena, Dad should be going to ER, there is something going on be it an infection or something else. They need to do a blood culture which takes 4 -5 days, however the ONC will usually order a MED like Levaquin (what Teddy took)  and get him started. Why allow this to keep happening to an already sick man? He is using all his strength  and everything he has to fight this off each time and the more it happens is that much less strength he has to fight the CC. Does Mom have anyone near her who can help her? Family or friends. If he goes to ER and they find nothing wrong, hey great, but at least what ever it is can be stopped from getting more out of hand.

I did just mom & dad in going to the ER!  Thank God!  They are on their way now!  Mom does have some support of relatives, friends & neighbors.  They have been helpful and I am so glad that she is not there alone to deal with it all since I am 7 hours away and my brother is an hour and a half away.  Up until ow, mom & dad were the caretakers of both of my grandma's, so other family members have had to step up and help with them who are both in their 80's.

I will keep you posted on the ER visit.  Dad is supposed to get his plastic drain tubes out and replaced with a metal stent the first week of December. 

Thanks for the push!!!
Rena

What a whirlwind of a weekend!  Dad does in fact have an infection brewing.  Once at the ER they began antibiotics right away!  He another Rigor's episode today!  Enough already!!!  Poor dad is wiped out from 3 episodes of Rigors since Friday!  His Dr now plans to remove his plastic stent and replace it with a metal wall stent 2 weeks earlier (next week).  They are working on setting that up now and in the meantime the antibiotics can start doing their job! 

Lainy thank you for pushing me!!!  Really, I felt the urgency in your post!  Thank you! 

Last night as I was trying to fall asleep, I had a thought....CC patients once diagnosed should be sent home with a manual on this illness!  There are so many situations that can occur at any given time.  Thank goodness for this website and all of you!

Rena