Just how big is it?

I visited a site today by a guy in his 40's who has pancreatic cancer. I spent an hour or more following his posts. Since pancreatic cancer is sort of similar to bile duct (rare, deadly, hard to treat) I was fascinated by his perspective and experiences. One thing he posted was a graphic of relative sizes of tumors - ie: Just how big are they?


I've had people ask me how big a tumor(s) do I have and haven't known how to describe them since most of us "americans" don't know a centimeter from a caterpillar.

On my original CT scan I had 5 tumors in my liver:
3.2 x 3.8 cm
3.1x3.8 cm
3.0x3.8 cm
2.6x3.9 cm
and
3.0x3.1 cm

So all of them are about midway between the size of a peanut and the size of a walnut.
Interesting. Added together it sounds awful - 15 x 19 cm or so? YUCK! What's that, about the size of a medium orange?

Of course I have numerous (we don't know How numerous) other smaller masses that they don't measure, that are apparently smaller than 2 cm, but that's another story.

I also liked the title of his Blog - I'm not dead yet! (see my list on the side for a link.) I've been tempted to respond with that phrase a few times when people have asked me how I'm doing, but I don't want to give anyone a heart attack! :)

He has a video clip of the Monty Python segment where that phrase is used. If I can figure out how to borrow it, I'll post it here - it's hysterical!

Regaining Perspective

Wow, I was blown away today to see that someone commented on my post! Thank you! Your note was so caring and concerned that I just busted out in some tears! Some good ones.

Despite how low I was feeling my last post, I do not think that I am getting "substandard care" or anything like that. I think my situation just falls into a lump where the most likely thing is progression (albeit slower than they thought before, thank God!).

I have sought for other opinions and both agreed that I am on the best course. I just don't have to like it! :) And I am going to a well respected cancer center, so in my more rational moments, I think I'm being given good care. I DO think that people who are famous or wealthy (or with excellent insurance) are often offered care opportunities that others of us are not. That's my opinion although I doubt if I could really prove it! Be that as it may, I've GOT insurance, I am GETTING treatment, and so far I'm still healthy (as can be) and functioning fine.

So thank you Anonymous poster, you helped me get back some perspective. I hope so much for good news for your father. I hated having "unknown primary" and still am not trusting entirely that they "know" that I have bile duct cancer. Too many "if's" in their comments.

I've also started seeing a therapist to work on some of the "stuff" that is coming up concerning having an incurable cancer and a lousy prognosis. I think it will do some good. I met with her this week and we talked about anger. Whew! That was pretty heavy duty. She told me that lots of emotions are bound to come up, that things that happened in the past may seem to have other imports now, and that I probably have many regrets, resentments, feelings about things that have happened that I have the "opportunity" now to re-assess and hopefully process and let go.
I sure do! We talked about my ex-husband and the effect he's had on my relationship with my daughter and I thought I was going to burst! It was good to get an outsider's perspective and support. Hard to do, but good. I want to get to a peaceful place about myself and all the mistakes I've made in my life and all the good things and things not done - all of that. The only way I can see to do that is to open myself up and take a look.

This cancer thing has a big effect - physically, of course, and emotionally, philosophically, socially, every way. Mostly I try not to think about it and go about day to day, but I am beginning to realize that if I pretend that it's not causing changes in me, and around me, I will miss some important stuff.

I'm off for my annual physical. Seems weird to have to go see my Primary Dr. to get my blood tests for hypothyroidism (been taking thyroid since my mid 30's!) but health is pretty compartmentalized. Regular health stuff still happens!

Cancer Sucks

Ok, Here's what I think.
I think that I have so many small tumors in my liver that they (the doctors) don't think that there is anything to do.

I think that they feel that the best they can do is wait until I have symptoms that they can deal with and then deal with those in a way that lets me suffer as little as possible as I die. My last appt was with my oncologist's assistant and she said that she thought I should get pain pills stronger than I'd had. I said no. She didn't understand that I don't want to just snooze through.

I think they have absolutely no thought to saving me or increasing my life span one bit.
I think they have totally written me off and their only interest is if I somehow continue to "beat the odds". But now they call my cancer "indolent' so that puts me in some space where they won't predict how long it will take to get to some terminal type of situation.
I think this sucks.

Apparently since I don't have major bucks or insurance, they are not about to try anything weird or experimental. I am just another junk heap cancer "victim" that they tell themselves they couldn't save anyway.

I feel like I've been written off and that not one dot of energy is going to go into me other than some sort of maintainance until the cancer grows so extensive that they then can say... put her in hospice, she doesn't have long to live.

I read about all of these people with various sorts of cancer who have been given treatments and surgeries and you name it, even though they think it will only come back, as it tends to do. But but for me "nothing can be done". I can get chemo, until the chemo itself kills me. but no one has anything to suggest, no matter how radical or experimental or whatever, to give me a shot. I've been told that if my measured tumors grow more, they might consider chemo embolization, but since they only measure a few of the biggest ones, who knows when that will happen.

I don't know how to fight this. I don't know what to do. I think I'm supposed to just take it. Ya, I'm angry, Ya, I'm pissed off. I wish I had someone somewhere who would say "let's fight this" and have some suggestion as to what to do.

I feel very alone.

I am alone. I don't have anyone who will or can step up and fight for me. Janel would have, and has, but now she has cancer too and has to do her own battles. Wouldn't ya know. I'd be there for her, too, but I'm doing the same thing.

I read all about how hard it is on the caretakers, but I wouldn't know. What happens to those cancer people who don't have caretakers?

Sorry I sound so negative. But the truth is we all feel negative at some point and it's only the myth that we somehow are such strong fighters and all the other hero bull shit that keeps us from voicing some of the more scary and negative stuff.

Well, since no one is going to hear it anyway, I guess I can say it for all. THIS SUCKS!