kimmie

Peggy, I am sorry what you are going through. We just lost my Mom to CC last month. She was on home hospice at my sister’s house, and my sister is a home hospice nurse. So she dealt with many of the same things you are feeling. When to take the “nurse hat” off and put on the “daughter hat.” I agree with what others have said. Though my mother never had jandice or other blockage issues, that seems like an easy and fairly non-invasive palliative measure. But the “quality vs. quantity” decisions are always hard.

Bazel – did your Mom have dementia when your father was battling CC? My father has vascular dementia, I guess you’d call it the middle stages. He has great long term memory, short term not great at all. Lately he’s “forgetting” more about personal hygiene, to eat 3 meals, etc. All through my mother’s time on hospice he kept forgetting why she was at my sister’s house and kept asking when he could take her home, when would she start feeling better, etc. It was torture to tell him almost daily that Mom has cancer and won’t be able to come home. Now we’re trying to talk him in to moving in with me and/or my sister. He is aware of his dementia and memory loss, and is able to verbalize how difficult that is for him. He has always been very independent and extremely intelligent, as his doctor said that kind of person makes it even more difficult to deal with losing their independence.

Haldol was a big help for my Mom too. HUGS for you Lainy. I know although this is such a tough ordeal, you would not trade this time for anything. Write down the stuff he’s saying… My sister and I were Mom’s main caregivers when she was on home hospice. We kept a notebook where we tracked everything (meds, meals, poops, etc.) so we’d know what happened while the other was gone. I started writing down the stuff Mom was saying in her sleep or in her half-conscious state. Things like “I’m almost ready”, “Daddy”, etc. It’s a comfort to read them now. We talked to her a lot too – hospice was a big believer that people getting closer to death can still hear you. My Mother was very afraid of death, so we were often saying things to her like it’s OK to let go, we’re here for each other, you raised us right and we’ll take care of each other, Dad will be OK, etc.

If I remember right, cisplatin is pretty rough on the kidneys, so the gave my mom lots of IV fluids at each chemo (she also got gemzar) and told her to drink 64oz of water a day all throughout the chemo portion of her treatment to flush the kidneys. I also remember her cheeks becoming red at every chemo, not sure if she ever had a fever though. Always had a headache that first night. The neupogen made her joints and bones sore, almost flu-like feelings, especially her legs and spine. They recommended Claritin to help with that, I don’t know why but it did help.

Hi Rick – I’m mainly a lurker here, but I read all of your updates. I am SO GLAD to hear the CA19-9 rise is probably due to the therasphere treament. YAY! I love to read those words: cell death.

Now you can look forward to your vacation with no more freaking out about tumor markers!

Hugs and prayers to Teddy and Lainy, to Kris… to everyone affected by CC.

We are ALL ABOUT paper products these days, both at my sister’s where Mom is on hospice, and here at my own house when I’m here. My 11 and 9 year olds give me a really hard time – “We’re putting too much in the landfills MOM!” I say wouldn’t you rather we spend more time together instead of me spending time washing dishes? Heck, I buy the cheapy-cheap paper plates anyway, not even wax-coated. They probably break down after one good rainstorm.

Heather,

It’s amazing, I never knew until last year (why would I?) that the liver is the only organ that can regenerate itself. Like Mom and I always said, like a lizard’s tail!

This cancer is so rare and every case is so different. They recommended for my Mom’s case that she have chemo after recovering from the resection, in case there were microscopic cancer cells still in her liver that the surgeon couldn’t have seen during surgery. She started about 6 weeks after surgery on a combo of Gemzar and Cisplatin. The side effects weren’t too bad, just some nausea and hair thinning. (She was actually quite PO’d that she didn’t lose weight, since she was overweight before all this started!) The side effects were managed very well with anti-nausea meds via IV during each chemo session. She ended chemo last December, and we found out Christmas Eve that there was no sign of the cancer anywhere and she was considered “in remission.” What a Christmas it was.

Every case is so different, as I said it’s so rare. Hers did come back, diagnosed in June. But there are so many success stories on these boards, and so many long-term survivors – in some cases many years. The way I look at it, it all comes down to constantly educating yourself on advancements, reading and researching, being an advocate for your family member, and not giving up hope or losing faith. Even now, with my Mom on hospice, I still hold a glimmer of hope, no matter how small. Even if she can’t be cured, that God will grant her plenty of time, and that the time she has will be comfortable and joy-filled, surrounded by family.

I hope you don’t mind me posting this – based on your reply and your user name, you might love this. It’s a quote from Gloria Gaither that I keep coming back to time again during this journey: “God walks with us. He scoops us up in His arms or simply sits with us in silent strength until we cannot avoid the awesome recognition that yes, even now, He is there.” May you feel his silent strength!