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! :)

Freedom to work????

NOTE: I wrote this before my trip but forgot to post it here. Will update this weekend.

Things have progressed since my last post. I found a funding source to get back on Medicaid (yea!) and am continuing the Xeloda chemo pills. My last CT scan showed no growth, so they decided this time to continue rather than stop the treatment. All the other times my CT scans came back negative, they'd stop that chemo and start something else, or stop everything. Not sure WHAT that is all about.

I have an appointment with Dr. Dragovich at the center. He's the GI specialist Oncologist I mentioned before - that I didn't know he existed, let alone at my own clinic. That won't be until June, but I'm very excited about it. My Oncologist and I seem to have come to an impasse.

I wrote up a bunch of questions for her my last appt. One of them being the triphasic CT scan that the surgeon in CA said he'd need to see to give me an opinion. Her response (through the nurse) was "if she wants a triphasic CT scan, have that Dr in California order it". Wow. The nurse DID tell me that my doc in fact did consult Dr. Dragovich when my CT scan showed growth (in FEB) evidently it was HIS suggestion to try Xeloda. Nice to know. sheesh!

The bad news is that my sister, who's been my main support, is having surgery today for Breast Cancer! She had had several biopsies over the years, always negative, but this time they found a lump. Very small, but aggressive, since it's showed up so fast, but then they are catching it early. Such twists! We're hoping for a clean lumectomy (sp?) and they plan on some radiation. The whole family is reeling from both of us getting cancer at practically the same time.

I'm going back to the Midwest next week. I extended my trip to visit my daughter in Chicago to also go to Minneapolis to visit my sister. I'm so looking forward to that! It's strange all of a sudden being a "caretaker" (as much as I can from 2000 miles) as well as trying to deal with my own issues by myself here in AZ.

I'm feeling ok. Some transitory pain in my middle, diharrea from the Xeloda, and it seems I'm getting fluid around my liver. It doesn't show up on the scan, I guess, but I've gained 15 pounds for some reason (besides eating a lot!) and I can FEEL my middle expanding! The nurse said I have a "little" fluid at my last check up last week, but let it go at that. I just had to buy new pants however! Anyone know much about this? She just said to watch my salt intake.

All in all I can't complain. They said my prognosis last August was 6-11 months, and we're at 9 months and I'm in good shape!