sittin here

You know, I'm sitting here, looking at what's been posted earlier, thinking thoughts, stressing, feeling feeling, whatever, and I don't know what the impulse is to share. I do and I don't. It's not like anyone really reads this shit. It's not like I can really talk about it anyway. It's like circling the drain. You can fight the whirlpool all you want. That's life. We all do it. Some of us just get to feel it a bit more specifically than others.

I'm going through emotional stuff now. I'm not suffering physically. Even this new chemo Xeloda pills seem to be ok. But I'm ANGRY. I'm feeling things. I'm aware of being STRESSED. I don't sleep. I'm tired and unhappy and feeling blue and I know it's nothing compared to really suffering, but I'm feeling that way anyway.

This money thing is a panic and a distraction. They can just cut off my health care! Zap. it's gone. Sorry. Stress city to figure out how to beat the system. Just what you need. I don't want to work, I need the money, I am punished if I make money. around and around.

This sucks.

gotta love the paperwork

I guess that didn't work so well.
I just got the final word that there will be no respite from cutting off my insurance.

Mayo is still waiting for an authorization and I found out this morning that it was held up because my primary had sent it on an "old" form. Supposedly they will all expedite things today/tomorrow? and I'm praying that Mayo will look at my stuff before the 31st and at least decide if they WANT to look at my stuff. We'll see.

check out www.cholangiocarcinoma.org

I've been mostly posting on a new website specifically for those with bile duct cancer. http://cholangiocarcinoma.org/punbb/viewtopic.php?pid=7082#p7082 is the page with most of my entries

Long time, lots of changes

Well it's been since December that I last posted. In terms of the cancer stuff, nothing much has happened. They see no growth, no shrinkage and are amazed. "Gee, seems like you have a very slow growth cancer". So they are doing nothing. First it was 6 weeks, then a CT scan. It again showed nothing. So they went 8 weeks. Had the CT scan last Thursday. My appointment to see what happened is this Thursday.

Such fun.
After the CT in January I met with my Oncologist with my sister. I asked her to come down from Minnesota to meet with my doc. I just felt it was going to be very important and I'd been realizing that I was intimidated by my Oncologist.

We worked for hours setting up questions and debating procedure and how to handle the meeting for best effect. Not to alienate the doc but to get some answers.

I don't think it went well. We did our best and the outcome sort of reassured both of us that she did, in fact, have our best interests at heart, but it still didn't really satisfy.

The upshot was we're going to wait another 8 weeks this time and then do another CT scan. She said (again) that they'd look again at my biopsy slides. Since this was an "incredibly slow growing" cancer, it made even her wonder.

Lots of in between stuff and I think the advocate at the center actually got it to happen, but they looked at the slides again and she consulted with a GI specialist who "thinks" it may be bile duct cancer.

Drama trauma

More about that later, cuz it's good to have a label, but bile duct cancer is just as bad, if not worse, than unknown.

I'm sick of it. Really really sick of it. I'm getting more pains in my middle and can't tell if it's gas or nothing or cancer growing and paining me. I hate this.

"This Thursday I will meet with the nurse praticitioner (my doc is out of the country) and find out the results of the CT scan I had last Thursday. I'm also going to tell her I want copies of all of my records. I want a second opinion and I want to send them to the Mayo Clinic. MN or AZ I don't know, but something has to happen here. I'm really frustrated and scared and tired of sitting on some bomb that I don't have a clue if it will blow or not.
enuf.