How it went

Argh. I met the oncologist in Stockton today. She’s Burmese, and there’s something of a language barrier—which grew quickly into a patience barrier, seemingly for both of us.

My friend was there to take notes, and to record. Dr. O.Y. objected to the recording; she said that Kaiser didn’t allow it. I would think that they’d support people getting (and retaining) good information, but oh well. We didn’t argue.

She brought up the path reports online, and let me look at them—but I didn’t have a chance to really read, or ask questions. I’d never seen the actual documents. I want copies (and e-mailed my regular oncologist, to ask if I could have them).

She asked me the same questions several times, about the lump I no longer have (changes, bleeding, growth rate). I gave her the same answers. Then I had to tell her three times why I’m not doing the clinical trial. She wasn’t arguing with me—she didn’t seem to understand. She interrupted, answering a concern she’d apparently assumed I had. Repeatedly.

It was frustrating. If I were going to be out here long-term, I’d switch doctors. Her web page says that her primary language is English. It clearly isn’t. She wasn’t all that warm, either. She wasn’t trying to be cold; just official. I’m guessing there’s some cultural miscommunicating, too. My oncologist in Oakland really listened to me. He took time. (I put him in the past tense, because he’s retiring right when I move back.)

I had to sign a consent form, for treatment. The oncology nurse came in to witness. Her demeanor was much more comforting; I liked her. But the form said that I’d had all my questions answered. That wasn’t remotely true; I’ll have an appointment later in the week (or Monday) with the oncology nurse, specifically to go over the details. Why I signed this now, rather than later, is beyond me.

I have to wait for the nurse to call me, to set up that appointment. It looks like I’m starting treatments next Monday. Good, I say—get me as adjusted as possible, before I go back to school. I’ll be past the horrible first month, then, and into the self-injections.

I had understood that those self-injections were to be once weekly. Dr. O.Y. insisted it was three times. She got a book and showed me. So now I have to prepare to be sicker than I’d thought I’d be. Grrr.

If I could have the same set of answers from one event to the next… I’m really tired of things changing up on me.

Dr. O.Y. sent me to get a baseline blood test. She’ll want one every month; I’m to see her once a month as well, I believe. Fortunately, the test only took one stick.

We went out for ice cream on the way home.

I’m so spent and tired—and I’m not even on interferon yet. This whole process takes so much out of me.

I mean really—how weird is it, to miss the care team in Oakland who escorted me down the damn rabbit hole to begin with? But I know them; they know me, and I’m tired already of introducing myself and my history to new people. Just treat me and let’s get it over with.

Keep praying, please: for emotional wellness, as much as for physical. My blood pressure’s rising, also; it was 138 over something. The higher number is never above 110. I don’t know if my body is freaking out or trying to tell me something—and I don’t know how to calm it down again.

I feel subtly out of control, like that. And even with clean tests, the possibility of cancer cells inside me makes me feel intrinsically dirty. Hazardous. Potentially polluted. I want to trust my body, support it, hallow it—and I don’t know how to reclaim the relationship I had, when I was first learning to listen. I am so afraid right now.

You are still my prayer circle. Thank you.