Thursday, May 13, 2010

By the way . . .

I'm Dilettanting these days, until 21 May. I never tire of Jerome Creek, Idaho, but if you do, be forewarned, that's all you're going to get for the next little bit.

Friday, May 7, 2010

How Does This Work?

Okay, so, of the $72,304.35 that Harborview charged for the Gamma Knife Radiosurgery, my insurance company, being a partner of Harborview, was actually charged (after "network savings") only $19,364.26. And I was charged $28.74.

Insurance should be available for everyone.

Thursday, May 6, 2010

The Plan

I met with Dr Specht today (after seeing my eye doc this morning and spending the next several hours with one eye dilated), and did not receive any new results from any tests from her, aside from the usual blood counts which were normal (not including tumor markers, which won't be available until next week, although the last ones from a month ago were, I think, 32, which is still within normal range, but higher than they were before). She was expecting me to tell her which of the three options for changed care I was interested in; at the close of my appt with Dr Jason on Tuesday, that's what I was expecting to talk about today, too.

But, yesterday at Taya's, I had a spectacular emotional breakdown about going back on chemotherapy because, it turned out, what I really wanted to do was have my next set of diagnostic tests (PET/CT, specifically) BEFORE anything else, because I really want to see if the MMS and Oleander that I've been taking since mid-March have done any good at all. Taya is a great person to have emotional breakdowns around, because she's seen them, and she's had them, and she's pretty calm about this whole life thing most of the time. And so, while I'm lying on her heated massage table, sobs wracking my body, my arms and legs and abdomen and face buzzing with 10,000 volts of energy just like in my panic attack, but not freaky because I knew why it was happening (more to investigate about this, I think), she sat there and chuckled and said "Good. Good! You're in a really good place now! Good for you! This is how you get more familiar with your intuition—break all these barriers away!"

Anyway, I felt quite calm and resolute going into my appointment today. I knew what I wanted to do and why; I'd done my research on the next steps and knew what those meant, so I could talk to Dr Specht about changing my treatment; but I was clear on what my intuition was telling me, and—even though it is scary to trust myself, and not just capitulate and start a new chemo immediately—I held strong for updated diagnosis before updated drugs.

Dr Specht was reluctant, but ultimately agreed, cautioning that she was getting more and more worried as time went by. I know she cares very much for me, and wants me to live as long as possible, and wants to do her best to help that happen, and doesn't really believe in a lot of the things I believe in, but she does, I think, trust me and what I need to do for myself. I know, also, that she thinks things will look worse on my next scans. But I don't think that—but, nor do I think things will look better—I can't keep an opinion on the matter at all. I just want to see what they say. I explained that I was not trying to put her off indefinitely; that I know that my situation is serious, if not at the moment presenting as acute. But that, if what I've been doing has, in fact, been clearing cancer from my body, I want to know that. She should want to know that.

I didn't put on an exam gown today, and so my sleeves covered my arms. There didn't seem to be any need to make a point of my tattoo, so I let it stay hidden. I think Dr Specht was worried enough about me today, without me essentially thumbing my nose at her.

And then I went and had my Herceptin infusion.

And now I am exhausted.

Tuesday, May 4, 2010

Two Down

Met with Dr Jason today after my first post-Gamma Knife MRI. Two of the three spots are completely gone, and the third has shrunk. My brain doesn't seem to have sustained any damage, from what the MRI showed. He looked at it three times to make sure, and my other spots appear to have stayed the same, and nothing new has shown up. I'll have another MRI in six weeks.

Dr Jason did, however, recommend that I go back on some systemic treatment (read: chemotherapy) anyway, because if the stuff in the brain already big enough to see isn't doing anything, then maybe the cancer cells are sneaking in from somewhere outside the blood-brain barrier. Also, last body scans I had, three months ago, did show some "marginal uptake" of a couple places in the skeleton, if you'll remember. Last night I read through all the proposed drug information Dr Specht left me with three months ago (not such a good night's sleep after that), and I asked for his recommendations to go with hers and my own guts. On Thursday when I meet with Dr Specht, we'll decide what to do next.

Dr Jason did suggest I not show the below to Dr Specht (his way of chastising me),
the new tattoo that I got last Wednesday, on the inside of my right arm. The reason I deserved scolding was that I had lymph nodes (some, not all) removed from under my right arm 11 years ago, which means that I am at greater risk for infections and lymphedema (uncomfortable swelling due to the body's inability to drain with a compromised endocrine system) on that arm. I haven't had my blood pressure taken or a single blood draw done from that arm since April 27, 1999--I know the risks. That was where I wanted the tattoo though, and it is, after all, my body, and so that's where it went. It's an orca and I love it. Dr Specht will live.