Made it throught the first YEAR!

It's really hard to believe that this cancer "thing" has been going on for a full year now!

To update me, I was diagnosed a year ago (Aug 1, 2007) with cancer in my liver of unknown origin or Primary. Since then I've had several chemo cocktails, (Gemcitibine, Carboplatin, Taxol, etc.), 14 weeks "off" and since Feb 08 have been on Xeloda - oral chemo, 2000mgs/2x/day. About that same time they re-evaluated my liver biopsy and now their "best guess" is that I have bile-duct cancer.

I have no tumors showing in my bile duct, only in my liver - no nodes. So I am still a bit of a mystery to them.

At first I had a lung cancer specialist, as it was the best guess at the time. Recently I've moved to a GI cancer specialist. The first thing he did was send me to a surgeon for an eval. The surgeon said I am not a surgical candidate too (everyone has said that) because I have too many tumors all throughout my liver. I found out that not only do I have the five they keep measuring with CTs, I also have "many" little ones that they don't measure. Shock and Awe!

He also said that he does not see me as a candidate for radiation because of the number of tumors. He said he'd not want to do radiation unless he had a 95% chance of getting it all, and in my case, that's unlikely.

He DID tell me the same thing as the Dr in Pittsburgh who I sent my records to. He said that IF the Xeloda stops working, that he'd consider chemo embolization. So... Finally I have that all confirmed. That's a quick recap of this past year.

Now for the good news! I just had another CT scan this week and it (again) showed no change. BUT the asst. showed me my scans and pointed out how before the tumors looked solid and firm, while now some look more fuzzy - more mottled in the interior and they suspect that it MIGHT be that some of the cancer cells are dying inside. They aren't shrinking, but they think it's worth a PET/CT scan to see how active they all are. This will be done Sept 4th.

Meanwhile I get a month OFF of chemo! YEA! Since I am going back to Minnesota next week to see my sister (who is in chemo and rad for breast cancer) and my brother and his family. My sis and I are going to a cabin in Wisconsin and hang out - I can't wait! I'm in AZ and here there is no lakes or "swimmin' holes" to jump into, and I miss that a lot! The others are coming too for the weekend. Hopefully it won't rain.

Anyway, back to my cancer. They know it is an adenocarcinoma, but really are not 100% sure what kind. They told me that if the biggest one in my left lobe is still very active, they might consider taking another biopsy on that one this time and see if it tells them anything more. My first prognosis when it was unknown origin was 3-11 months, and I just beat that but if they knew what it really is, they might be able to target treatment better. Is ANYone out there in a similar situation? I feel pretty alone with this thing, I'll tell ya!

I asked my doc's asst. if all this meant that I might actually live for a few more years? And she wouldn't say, but she'd just given me an example of someone they'd had there with a similar liver mets (only in liver no where else) and she went for 2.5 yrs without chemo! I feel really weird about all of this. To go from thinking I was going to fall apart any day to now thinking maybe not! I booked a flight to Chicago for Christmas to see my daughter and it really felt strange to make a plan 6 months ahead! I haven't dared do anything like that all of this year of cancer.

I get that it's best to live in the day, but "regular" people make future plans, and it feels good to do that, but I DID buy cancellation insurance, just in case.

I'm not sick now except for extreme fatigue when I'm taking the Xeloda (2wks on, 1 wk off) but not much pain, no loss of appetite (I should - I'm GAINING weight!) and thank God I'm not experiencing any of the many awful things I could be suffering. They told me this could change any time, so I feel like I'm holding my breath. Hoping I can breathe again soon! :)

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!

Anyone ever tell you that you DON'T have Cancer?

One type of cookie down, one chilling in the fridge.

While engaged in these holiday domestic duties I've been reflecting on my current "on hold" status as a cancer "survivor" (Still not entirely comfortable with that term!).

Having a cancer of unknown primary - CUP - is bad enough. If you tell someone you have cancer, invariably you are asked what "kind". Then you have to either go into an explanation of what you don't have, and generally it's more than they wanted to know, or you just say where it is located - in my case, in my liver.

But now I get to compound that issue by being in a no-man's-land state of no growth. So, am I in active treatment? Is this going to last very long? Does it mean I might be "healthy" for a while? What?

It's led a couple of people I know to ask me if I'm SURE I have cancer in the first place. Now how in HECK are you supposed to answer that? Well, they took a biopsy and checked it twice and determined they were "naughty" cells. (Hey, it's the holiday!)

They are "slow growing" so much so that there's been very very little change since they first found the growths. Does that mean that they are not growing at all? Does it mean they are not actually cancerous? Does it mean .... what?

It DOES mean that the two different chemotherapy protocols I've had have NOT appreciably changed anything. OR.... maybe they did! Or maybe one did but we don't know which one.

I can see why some family and friends are wondering if I've gone through the last 4-5 months for nothing! Since I'm "invested" in all the fear and remorse and pain and loss so far, I don't "want" it to be for "Nothing". On the other hand..... I'd love to just turn the clock back to July when I was blissfully ignorant of anything in my liver that didn't belong there.

I see more significance and truth to the hat I purchased from the "Crazy Sexy Cancer" website all the time. The hat is a knit cap totally unremarkable except that embroidered along the front is the phrase "FUCK CANCER"! No kidding.



Note to those who haven't heard of this yet:

Cancer Survivors Kris Carr and Erin Zammett Ruddy

Crazy, sexy…cancer?
It’s quite the feat to laugh in the face of a deadly
disease, but that’s what Kris Carr—the woman behind the new documentary Crazy Sexy Cancer—does every day.

I love this whole interview at http://www.glamour.com/health/articles/2007/08/crazysexycancer also see Erin's Blog at: http://www.glamour.com/lifestyle/blogs/editor

One of the interviewer's (Erin Zammett Ruddy) questions:

ME: What do you do now when cancer gets to you? Buying things I don’t need and can’t exactly afford, like a third pair of Bruno Magli sandals, always helps me.
KRIS: Shopping is often my cure, too! Or I dust glittery powder on my face and dance to hippie music. I also pray, do yoga or dive into an inspirational book. If I let a blue mood run rampant, before I know it I’m obsessing about the color of the satin lining in my coffin—will it match my dress? That’s when I feel like Alice in Cancerland falling down the rabbit hole and just have to stop. Seriously, you should try glitter; it’s incredibly healing.

I may not be in the age group these women target (Under 30 more power to 'em) but I'm right there with the sentiment! (I WAS a hippie!) So I wear the hat even if I cringe sometimes that some little ol' lady at the Cancer Center will be offended. Or that someone will yell at me at the grocery store. OH WELL. Where do I get the glitter? :-)