Thursday, May 18, 2006

Next Step: Chemo or Clinical Trial

Robert & I saw my oncologist on Tuesday. We discussed several clinical trials; both Dr. Bergen and I had done research and we compared notes. There is one trial that he thinks might have merit, so he was going to investigate further. We discussed chemo options as well. We meet again next Tuesday to discuss which road I'll take. In the chemo realm, he is in favor of starting with Gemzar alone, but he asked me to think about how aggressive an approach I want to take with the chemo. Gemzar (gemcitabine) is well tolerated. Typically, you don't lose your hair and their are minimal side effects.

My liver is enlarged on both the right and left sides. There is some indication that there is liver damage. My bilirubin is still working okay, but when that stops you get jaundice and have to get a stent. My right side hurts most days. The liver itself doesn't have nerve endings, but the "capsule" which encases the liver does. Usually, Ibuprofen works on relieving that pain. I asked Dr. Bergen some hard questions about life expectancy and how the disease will affect me should it progress.

I attended the last portion of the cancer support group for women. Kay, our leader, firmly believes in miracles, so that is what I'm hoping for in my fight with cholangiocarcinoma.

We went to see one of my case managers at my insurance company after seeing the oncologist. We also got a pair of my crocs fixed. One of the grommets had come fallen out of a pair. We found a nurse's supply place that sells them for the best price we've found, and they had extra replacement grommets.

We also went by Carlson Memorials and ordered our "headstone" for our cemetary plot. We are both planning to be cremated, so in Ouray we can have one plot. We actually opted for a bench made out of a South Dakota granite. Our ashes will actually go in the base of the bench. The bench will have our family name engraved on the side, and on top of the bench we'll have our names, dates, etc. with some artwork.

We also ran several more errands up in Grand Junction on Tuesday and had dinner with friends. Yesterday, I had two booths at Taste of Ouray: one for the bookstore and one for the Humane Society. Later today, I will set up the two booths for a "Women In Construction" conference coming to Ouray this weekend. Robert helped me a bunch yesterday as I'm sure he will today. Last night I was exhausted. I slept a long time (for me) last night, but I know I'll be pooped again this evening.

So that is where I'm at now. I'm just up here in Colorado praying for a miracle.


Sari D said...

Hang in there girl. Lots of miracles to be had and I know that one has your name on it. My prayers are coming from Texas. The pictures look great! What a beautiful place to live.(and you look pretty good too..haha)

The Johnson Family said...

Well we are way down here in Alabama praying for that same miracle. You and Sam already have it - it is just in God's time and not ours; I'm sure he will send it soon!! While waiting for Sam to have his chemo treatment yesterday, I read a book called GOD IS IN CONTROL by Charles Stanley. It is about obtaining an unshakable peace in the midst of life's storms. I highly recommend it. Have a good weekend.

denise said...

Hi Caroline, I am thinking of you and praying for your miracle to come soon.

Susan Doyle said...

You are a gem, Caroline! Having not one but TWO booths at Taste of Ouray! One of your fellow bloggers gave you the name of a different drug which shrank her tumors - it wasn't Gemzar. EVERYone who has aches and pains should check and switch to raw fruit and vegetables, to rebuild their immune systems. We're praying for you, Caroline!

delaware friend said...

Hi Caroline, cancer-fighting semper fi from me & the boys in delaware. No Ouray this summer, I've just started chemo for a large breast cancer tumor. I believe in miracles, and am praying for one for you -- and me!