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?

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!