They Don't Deal in Guarantees

(Advance apologies for the high level of oncological details in this post. There will not be a test.)

We had the first meeting with my medical oncologist last Monday, after the episode with the squirrel. She seems to be from the same bright and super competent sorority as my surgeon. Multiple people have told me she is the absolute best in Atlanta, and so far I'm willing to believe it.

At this point I want an expert to take me by the shoulders, look deeply into my eyes, and say, "Yes, you are going to be completely 100% fine. You are going to beat this, have no recurrence, and live until the age of 102, when you will die peacefully from having eaten too much risotto." Nobody will quite tell me that I'm definitely going to live to see my children grow old. I no longer ask because it starts to seem impolite.

That said, it was encouraging to meet with the oncologist and learn that she stages this cancer as a IIA. For any of you cancer nerds out there, here is some more info (the rest of you can skip to the next paragraph): Stage IIA, multiple foci with largest area of infiltrating ductal carcinoma 9mm, one lymph node involved, strongly estrogen and progesterone-receptor positive, not her-2 overexpressing, a high cell proliferation rate as indicated by a Ki-67 measurement of 32%.

So that up there is what they took out of me. The oncologist liked the small size of the largest tumor, she liked the strong hormone receptivities, and she did not like the high cell proliferation rate. She said this cancer is "a mixed bag." Small but potentially nasty. She also said, "Thank God we got to that early, because it would have been several years before anyone made you get a mammogram and by then you would have been screwed." Those might not have been her exact words, but that was the gist.

I was confused by the whole tumor-size issue, because the surgeon had said I had a 4-5cm mass. Apparently that was a mass of ductal carcinoma in situ (the kind that stays put in the tubes), which she wanted to get out, and the parts the oncologist was more worried about were the littler bits that were starting to grow up, get rowdy, and move out of the house.

So, stage IIA. That puts me in a very pleasant bracket with a 92% five-year survival rate. I am happy to be there. But even though that 9mm tumor and that bad lymph node are sitting in jars downtown, and they can't hurt me anymore, the doctor is of course worried about what they might have gotten up to before they were taken out. She had a lot of metaphors involving trains and buses. The lymphatic system was the train line and you know where all the stations are. Blood circulation is the bus system and who knows where it goes. There were more metaphors. But the point is that we now have to do something to round up any cells that may have hopped a bus and be in there riding around, and that something is chemotherapy.

On metaphor: if you read this blog you know that I am a word person and that words matter to me. We live our lives in language. If you have a complicated thing wrong with you, or if you are just interested, I highly recommend the book How Doctors Thinkby Jerome Groopman. It talks about doctor-patient communication--Groopman says that although a doctor's tools are medical, she meets her patients in language and language is the first tool. As a patient, you must use language to be your own advocate, to help your doctor avoid certain cognitive pitfalls (that the rest of the book about), and to get better care. You do it by active listening and by asking questions. Ask questions to find out stuff you don't know, or to clarify stuff that isn't clear, but also ask questions that make the doctor say what she thinks in several different ways. If something seems tacit in what the doctor is saying, ask a question that makes it explicit. I tend to ask lots of questions that start, "So you are saying that. . ." or "What would be an argument against [what you just said]," or "What would be another way of saying what you just said?" It is kind of exhausting.

But we learn. Every time we meet with another person, we get a slightly different window onto this whole complex disease process. The surgeon's view and the oncologist's were quite different. We left our surgical consult thinking, "OMG, this is a whole mastectomy with a large mass and there are two funny-looking nodes." Then came the surgery with its news of only the sentinel node involved and clear margins. Then we left the oncologist's office thinking, "Okay, she told us that one node is not 'falling off a cliff' and it's an early stage cancer and we're just trying to hold down the odds of a recurrence. I am going to make it out of this."

Probably with no hair, but I'm going to make it out.

A lot of the question right now seems to be how aggressive to be with the chemo. A nurse said to me, "It's funny--the better the prognosis, the more aggressive the treatment." The onc said she "agonized" over whether to do a so-called "dose dense" regimen where I get chemo with adriamycin every two weeks, or a different regimen that is only every three weeks. She doesn't like how aggressive that small tumor seems. She is also trying to weigh the risks associated with the dose dense drug--risks of cardiac damage, secondary leukemia, and who knows--because I have to use this body for many more decades. She decided on the conventional every-three-week course. She said that in her training, they called adriamycin "the red death." So, not getting that is good, I think? She also said that in her experience, young mothers were willing to "call in airstrikes on themselves" if it meant guaranteeing they'd be around for their children. I guess the dose-dense adriamycin would be that airstrike, and I told her I would do it if she thought it best. But she went with the other thing, four to six cycles of Taxotere/Cytoxan.

I know, details. So get this, I am starting this on Wednesday. As in, in four days. What the HECKS? I thought we were, you know, just talking this stuff over. But, um, no, I actually have to do all this crap. We had a meeting with the nurses yesterday about what to expect and side effects and all that. I am sure you'll be hearing more about this, but now I will bring an end to the longest and most poorly-structured blog post in these United States.

But I am serious when I say that everything is fine. I told Matt last night, "Is it weird that I feel really happy?" Not weird I guess. I am not happy about the hair issue but we can talk about it later.

I'm happy because I got my second surgical drain out yesterday and there were no rodents involved. Phew. And Amy is coming! Wednesday!