Nano-probes for cancer?

gotta love nano-technology! Why we need MORE cancer research!

Nanoprobes detect and destroy cancer

Vacation of a lifetime?

My sister and I are going on a river cruise! In two months come hell or high water (or low water?)

This is a river cruise along the Elbe with Viking River Cruises. It starts with 2 days in Berlin, a transfer the river with a stop in Posdam. Then Magdeburg, Dessau, Wittenberg, Torgau, Meissen & Dresden Germany. Then a float through "Saxon Switzerland" as they call it, with a stop at Bad Schandau. Then on to Czech Repulic at Litomerice & Melnick. Then a transfer to Prague and 2 days there. Wow!

I'd been waiting 6 weeks to see my actual Oncologist last week. It was to be very exciting because they have re-decided to find out just what sort of cancer I have. They were going to send the biopsy they'd taken back in Aug. 2008 to a fancy lab that would look at it genetically, do a "molecular analysis" and see if they could find a better direction for treatment.

The long delay was to make sure that this lab had time to get the results sent back.

I thought I'd posted a note about my Oncologist appt the next day! I haven't been on in a few weeks and I see now that there's nothing there!

WELL, there was nothing "there" for my appointment, either! I was SOOooo annoyed and frustrated! Turns out that I guess the sample biopsy from 1.5 yrs ago when I was first diagnosed was no longer good enough, not big enough, I don't know, but it wasn't useable.

Instead of letting me KNOW that, though, nothing happened and I waited 6 weeks for nothing! Someone dropped the ball. They KNOW that cancer patients are always on edge waiting for results, how could they???

Anyway, I showed up for my appointment and my doctor says,"Well, let's really find out what you have". I said WHAT??? you were supposed to do that 6 weeks ago!!! They Should have called me and scheduled a new biopsy when they found out the old one wouldn't do. ARGUUUUHHHHHH!

So I am now scheduled for a biopsy next Friday, April 3rd. I'll have Another appointment on the 9th for results. But I already know that despite the fact that they plan to (again) send it off for genetic/molecular analysis, it won't be back in one week! I'd bet $100.00 on it right now! We'll see.

Sorry to keep everyone wondering what happened! Other than that, I'm hunky dory and planning the "vacation of a lifetime" in Europe with my sister in 2 months. I'll be DARNED if the cancer people mess that one up!

I know, life goes on

It's been a while. Life went on and on and I am happy that it does.
I had a wonderful/awful Christmas. I'm still healthy and so far without treatment.
I had a CT scan in Jan and something grew again.

Scary, awful, scary, awful, and more of the same.

I have finally had some pain. You have no idea how I do not want to report that. Pain means progress, pain means trouble, pain means pain.

I'm so frigging scared now I don't really know what to do about it.

The last CT scan showed some more growth. I'm pretty devastated about that. Add to it this feeling pain thing. It got their notice. I joked with my sister that heck, if I knew that reporting some effects would get their attention, I should have done it lots earlier!

So they decided that they should send my biopsy somewhere new to be genetically analyzed. Especially because my sis got triple negative breast cancer about 9 months after I was diagnosed. They are now wondering what kind of cancer I really have.

Gee, I could have told them that this was an important question a year ago!

March 19th I have an appointment with my actual oncologist. He's hopefully going to know what the analysis said, and depending on what they find out, hopefully have something more specific to treat me with. Having a cancer of unknown origin is the pits. They really have no clue what to do. The idea is, perhaps i really have breast cancer too! If so, they are all hot on some new treatment that is so far only approved for breast cancer. If somehow my reports can say that, they are all hot on giving me that trial drug. Sigh............ I don't know what to wish for.

more pictures

Pics from vacation in Wisconsin

Here are some pictures from my vacation with my family in Northern Wisconsin.

Catching Up

It's been awhile since my last post. That's because things are at a standstill. I'm no longer taking any treatment. No chemo, no pills. And I won't be taking anything until December 2nd when I have another CT scan, and the 4th when I will review that scan and have blood tests.

Seems that whatever is going on with me is Not a rapidly growing cancer. Nothing has really changed since I was diagnosed back in August 1 2007. Seems strange, when at that time they told me I was Stage 4 terminal, non-operable, cancer in my liver. But,,,,, guess what? I'm still here.

I've not had any Xeloda, or any treatment for a few weeks now, and my body is definitely detoxing. I'm sleeping like crazy! I don't "feel" exhausted, but if I dare rest my head, I'm asleep. My skin is also going nuts. I itch. My skin has pretty much pealed a layer. My eating patterns are disrupted. I am craving sugar. Even if I eat sugar, I have no energy. I've been working about 20 hrs/week, and am exhausted when I come home. I nap. Then I go to bed and sleep. Weekends are mostly slept through. It's weird.

My sister has been going through crises and she didn't tell me until it was defined, at least somewhat. They found a new spot on her lung and went crazy. It was a new thing, looked like cancer. If she'd metastasized from her breast to lung it would really be bad news. Fortunately they say now that it's not cancer. She had a lung biopsy that sounds hellish. They then tested her for TB, so far, not that. More tests, some which she'll find out about on Monday. God Damm!! She shouldn't have to go through this and I'm so unhappy that she went through a weekend of thinking she'd metastasized and didn't tell me! I get why she didn't but I still feel bad.

If you can't go through cancer with your sister who also has cancer, who the hell can you share it with?

We've found a neet thing tho. We are both on Skype and have video cameras. It's so fun to SEE JB while we chat! Everyone should do this! Other than buying the camera (her's came with her new laptop, I bought one) it's FREE! What a treat!

Life otherwise goes on. I'm trying to figure out what to do about Thanksgiving... I'd love to go home but it's not really in the cards. For Christmas I'm going to Chicago and staying with my daughter, Tara, I can hardly wait for that! I bought my ticket last July, when I still thought that I might be in hospital by then, maybe dead. It was such a leap of faith! But here we are almost to the middle of November and I'm so fine! What a gift! Until you have really believed that you have not long for this world you cannot imagine what it feels like to think that you will be around next week. Trust me on this one.

The only things I think about these days is my family. Tara is the biggest, of course, but so are my brother and sisters. It breaks my heart that my youngest sister, Susan, is not "with" me. She's only a few hours away, yet she doesn't talk to me. She, i have to say it, ripped me off this summer. I'm unhappy about that and I wish so much that she'd talk to me about it, but she doesn't . I did finally get a generic email when she moved to Bisby, AZ, and one or two more, but so far, she is apparently in denial. She won't talk to me. We've not talked since June, when I let her live in my house when I moved to my new apt. Double rent thing... She has no clue what's been going on with me, or Janel, I gather, since then and apparently doesn't care. She wrote me in an email that I could "tell" her what's going on, but didn't ask any questions. As far as she knows, I could be on death's door. Last June I was thinking about my funeral! I know many people have family issues like this, but to me, it is the most hurtful thing I can imagine. Apparently she just doesn't care.

I know she has her own health issues, but the point isn't how self-involved you are, it's what you feel about others. I wrote her an email, talking about how hurt and disappointed I was. I said "they" and "You guys" to soften it a bit, but was talking about Sue specifically, She wrote back sort of excusing the others _ Janel has cancer after all --- but obviously missed the point. Broke my heart and to this day I've not responded. How can I tell her that SHE is breaking my heart when apparently she doesn't have a clue? I dunno.

Family stuff, I guess. Totally unbelievable how much it hurts.