michelle432

Jan –

The first day home was interesting. Dad suddenly decided he wanted to go to the bathroom in his own bathroom. Got the walker and my Mom took him and then he couldn’t get up and couldn’t breathe. It was a flurry of trying to hook up the oxygen tank and getting the wheelchair open. Needless to say, he didn’t try that again. He’s been in the bed most of the time – his urine output is practically nothing (meaning nothing for several days, then a little, etc.). He is still drinking and I heard that he ate a little bit this morning, which is surprising to me.

The hardest part is his anxiety, but they seem to have that under control as of yesterday. He is in and out of it, which is also hard. He’s not the Dad I remember – as you say in your post above. He wants no visitors except for me and my Mom.

I am stuck between wanting to hold on to him and wishing he would just go to sleep and pass peacefully.

The hospice nurse on Sat said she thought he had a week or less. I don’t know what to think. I do believe that it will be soon.

Kris – I am crying my eyes out reading your post. You are such an amazing person. I’m not the one having to go through this horrible cancer, it’s my Dad, but you are the one comforting me.

I’m glad I’m not the only one who’s mad at the whole breast cancer thing – it’s the same example I give to people when I get so mad at this. There SHOULD be a cholangiocarcinoma month. There should be more research and more awareness. I’ve been on this board since my Dad got sick, but I haven’t spoken much about myself. I have worked in clinical research (clinical trials) for my entire career – 16 years. I work on studies to get new drugs approved by the FDA. I’ve worked on oncology studies and up to this point had never even heard of this cancer. Once my time frees up a bit, I want to help in any way I can with people suffering from this. If my background and experience can help in anyway I want to do it. It may not be in time to help my Dad, but maybe it will help someone else’s Dad or loved one.

God bless all of you and your families
Michelle

Hi all –

Thanks for your replies. BethT – thanks for your information. Maybe this is what they are thinking for my Dad? I don’t want this to delay his chemo. So it looks like maybe it won’t. Lainy – he has had multiple MRIs, CT scans and 3 ERCPs. All brushings came back inconclusive. He also had a bronchoscopy as something is going on in his lungs – also inconclusive. So they don’t have a ’tissue’ diagnosis of CC, but all signs point to it. The oncologist originally told my Dad they could go in surgically to get a tissue sample (liver maybe?) but that the recovery would be 6-8 weeks and it would be high risk b/c his bilirubin is so high and he’s so sick. So my Dad opted to just start chemo which the onc agreed with. Now oncologist called back and said she wants him to speak with the surgeon. Why? I don’t know. For staging purposes? Just to look around? This is just so frustrating.

Hi all –

Thanks for your words of support! My Dad had a PET scan yesterday and we have an appt with his gastro tomorrow afternoon for results (hopefully!). He then has an appt at Dana-Farber in Boston on Monday. I’m glad at least that they’ve moved fairly quickly in getting him to an oncologist (although it’s never quick enough). I will update everyone once I know as I’m sure I will have tons of questions about treatment.

Michelle