I've been remiss - on chemo vacation

I see I've not blogged for a long time! wow!

My last post was about the genetic testing they did, and that nothing really new came from it except that they eliminated all sorts of "other" cancers that now it is definitely NOT. Ok, so what is it?

They have a name for my cancer now (after 2 yrs!) At least this is the latest incarnation. It's called CholangioHepatoma (means part liver & part bile duct cancer, but all mixed together in each tumor). If I thought bile-duct cancer was rare, this really takes the cake! Having two kinds of cancers in the same tumor is quite a stunt I think.

Regardless, my Oncologist says that he thinks I am acting "dormant". Meaning, as we've been told forever, nothing is growing (much)and nothing is shrinking at all despite 4 different Chemo attempts and a year of chemo pills. The good news of that is that I am on vacation from chemo. I've not had anything all summer!!!!! Now, in September I'm feeling sorta 'normal'? Better, anyway. At the end of the month I have a CT scan scheduled and will meet with my Onc 1st week of October.

Emotionally or mentally, this has caused a change in my attitude. I've found myself doing things that assume I'll be around for awhile. I'd ask Dr. Dragovich if I could believe from his comments that my prognosis could be for three years? and he said yes. Now the problem is... did he count these first two????? :) I'm gonna say Yes!

So, I've been "feathering my nest", purchasing some actual furniture accessories, etc. I took the vacation to E Germany and Czech Republic - still owe some pictures here!!! (I forgot!) and even went to the dentist!

Now going to the dentist doesn't seem very odd, but in my mind while I knew I had some dental problems, why get into it if I'm not going to be around very long?

When I found myself in the dental chair agreeing to have a tooth pulled and making plans to get a bridge, I had a sort of bubbly champagey feeling....Wow! I must think I'm going to survive!!!! That was very strange after two years of thinking any day now I'd be down for the count.

So I'm liking this vacation and hope it lasts a GOOD LONG TIME!
Here's a picture of my sister in Prague and I in Germany.♠

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!

What do you do with a slow growing tumor?

I've not posted for a while despite the fact that a lot has happened, the bottom line is not a lot has changed about my cancer itself.

I had some growth back in February, the first time that showed after 14 weeks of no treatment. They put me on Xeloda then and I've been on it since. The one cat scan showed no growth so they said to continue. I'm to have another in July to see what's up. My new oncologist said that if it shows no growth again, we may be able to take a "vacation" in August. Whoopie!

I have a new Oncologist. This one, Dr. Tom Dragovich is a GI cancer specialist. Seemed to me that I should be seeing someone who specializes in the type of cancer it seems that I have. Unfortunately, I am less certain all the time exactly what cancer type I actually have!

The bottom line, at least for this moment is that it seems I might have a better prognosis than I had almost a year ago. Since I have a sluggish, passive, lazy, "indolent"type cancer, hopefully I can assume that that will continue for a while and I can make a plan that is further out than a couple of months. I guess.

Other than the little change in the cancer itself, a lot has been happening. I decided that if I have to deal with this stuff, I'd better get some "ducks in a row" as they say. So, I've moved to an apartment with air conditioning and taken a 9 month lease, I changed doctors, I planned a vacation to Wisconsin in August, I finally got to see a therapist and set up some counseling, I got my financing in order, as much as I can, and as of today, 99% of my stuff is moved to my new place which is only 2.5 miles from work.

I think that's a hell of a lot!

I have a lot less energy than I used to, I think my skin is getting slack, I'm sicker on these pills than I was at first, and, what? I don't know... I'm doing the best I can with the hand I've been dealt.

My new therapist, Krishna (gawd how 60's!) is willing to work with me on the things I think are important. She wants me to journal, and thinks that blogging isn't quite as "real" and I sort of agree, but I can't seem to get back into actual writing, so for now, this is it. I have to get over the idea that my nearest and dearest might read this. I am so into self-censoring to make sure they will still love me. We've had two meetings now. One meet and greet, and the one last week to make a plan. The highlight was her asking me, in an awkward form, if I really really am dying and do I have to deal with that stuff. Ya.... I think so.

She's ok though, She has some moxy and doesn't cop out. That's a good thing. Now I have to try to get across that I'm so friggin verbal I can sell ice cubes to .... no I can't, but I am full of a lot of bullshit, so it's always a danger.

Writing. I love to write and I hate that I can't write. I guess if I have a goal before I die I want to write a book. That is so scary. I always wanted to write a science fiction book, sort of like Heinlein where it was in some future space, but about people. But I am so undisciplined. What could I acomplish that would make me feel like my life has been worthwhile? THAT is the question.

I've messed up and blown so many things. I think I had a blessed life and I've made it harder and harder for no good reason. I guess I'm not sure what to do about that at this point. What to let go, what to fix, if I can, what to strive for that I didn't. I don't know. But aren't we here to do something?