kvolland

Michele –
You are doing the greatest thing that love can give…..being there when times are tough. I will keep you in my thoughts as you go through this. Lean on your hospice team and ask, ask, ask whenever there are questions….there are no silly questions at this time.
I might suggest for the medications either have hospice bring you one or buy one at the pharmacy but use a pill box to set his meds out for a week at a time. Then I would just add a nausea pill into the meds routinely. Sometimes the Zofran works good for this and so does Dexamethasone and the Dex works best if given routinely. Give the compazine routinly also rather than waiting for him to say he has come nausea and ask for meds.
Kids, especially as they get older deal with grief differently than when they are younger and different than us adults. Quite often they internalize stuff and it comes out later.
My youngest lost his father a year ago to alcoholism and he was there through the whole end of it…he’s the one that found him. He has never really talked about it at all. He spent a little angry. I just reminded him that I am here for him if needs anything. Just watch for things like out bursts of anger and such.

Hang in there and remember we are always here for you.

KrisV

Hi Evan –
Welcome to the family or the roller coaster ride because it certainly can be first. My husband was diagnosed in May and thankfully was able to have surgery. He now has 3 doses ( round and a half) of chemo with Gemcitabine and Oxaliplatin and doing well.
As far as being told no surgery my suggestion would be a second or third or even fourth opinion. The surgeon may not be familiar enough to do the very complicated surgery that this involved. I would make sure that all that are involved are familiar with it.
I would also point blank ask the doctor why they chose that cycle for chemo. I know my husband goes every other week for his and I asked the doc and he said that it was a good cycle to keep people from missing or delaying a dose. It gives the blood counts a better chance to recover. And so far we only had to put off the very first dose due to being in the hospital.
Also don’t discount surgery completely at this time. There are plenty of people on here that were initially told no but eventually were able to have it.

Take care,
KrisV

Jason –
My husband agrees with you totally…and well so do I for that matter. I guess you could do a veggie pizza but somehow that is just not the same.

KrisV

Hi Chuck –
And as everyone else has said Welcome to the Family…..or the roller coaster ride depending on the day. I have said several times that this is not fair to any of us. This is my husband’s second battle with cancer in his 50 years. Thankfully the first one was Hodgkin’s lymphoma. And at the same time my husband was diagnosed with the cc, our youngest son was diagnosed with thyroid cancer so I cried and yelled a lot for my family.
I think everyone get scared and upset by cancer, no matter what the cancer and who they are. I would almost say you were abnormal if you didn’t. Even my husband who is the most positive and upbeat person who never lets anything get him down has had his moments. A few weeks ago he up and decided he was done with chemo….no more and had the whole house in an uproar. He was 5 doses into 12 doses without even having done the halfway scan. Then the next day he was fine….acted like nothing had happened.
It’s a crazy disease and so traumatic to everyone involved in it.
We have started doing things a little differently in our house. We take it one day at a time. We live in the moment and I take lots of pics that not only show our journey but keep the memories alive.
We have our first grandchild who thankfully lives with us and has been a blessing to all of us but Grandpa wants to be there for all of his firsts.
Good luck with your fight and remember we are all hear to listen.

KrisV

I too as a healthcare profession often times only see patients in passing. I quite often wonder how things turn out after I am gone. In my current position I only see each home health patients for a couple of hours before turning them over to their nurse case manager. I think every health care professional looks back. I thankfully live in a small community and run into family members, friends or even the patient’s themselves. I think truly dedicated healthcare professionals have that compassion and concern about the lives they intersect with.
Good job with that one Gavin!

KrisV

Macro –
My husband had the same surgery your dad did for his Klatskin’s tumor back in June. There was an issue that came up in July regarding a possible infection in the area where the bile ducts and the duodenum come together. The original surgeon consulted on this since we were arguing against having stents placed. Our surgeon said he could do no more surgery in that are (meaning the area of that original surgery) but he did not say no more surgery ever, just no it that spot. We are currently 8 out of 12 doses of Gem/OX down and doing fairly well. My husband had clean margins and one positive node. I would think that age should have nothing to do with doing a surgery or not (I do understand your health system though), it to me is more of a quality of life issue so be your father’s advocate. I have always said that the squeaky wheel gets greased.

Marco you would welcome to email me directly if you wish. dazoo3563@comcast.net

KrisV

Jules – one of the side effects of steroids is quite often an increase in appetite which in some cases in a very good thing. IF you are diabetic it will also cause changes in blood sugars including elevated blood sugars and rapidly changing. I would say if she is hungry for what ever reason then let her eat. I would just make sure that whatever she eats has good nutritional value and try to stay away from empty calories. Proteins where animal or plant proteins are one of the biggest needs since her body is fighting this disease. The higher the protein levels are in the blood the better things should.
You may also see a slight burst of energy with the chemo quite often related to the increased fluids and the steroids. You that too but don’t let her wear herself out.

Good luck as things go on.

KrisV

I tried the baking soda in chili tonight and it worked great….no heartburn so far. I may have used a little too much for what I made. A coupe of people in my house complained that it didn’t taste quite right but I liked it. Maybe I will use a little less next time.
Thanks bunches Lainy.

KrisV