taxol: round one, day 3

Laura is a visual learner. Put her in front of a movie or a computer screen and then try to say something to her that she needs to retain: everything has to stop and she has to swivel her head toward you. She'll catch everything that comes her way visually, though. She's constantly pausing movies and saying, "I just saw a mistake." Sure enough, run it back ten seconds, and the guy who was drinking out of a mug is now drinking out of a cup. The woman with the scarf tied one way has it tied differently now. The newspaper on the lap is flipped over. I am always impressed.

Auditory learning, on the other hand, is not her thing. I forgot that when I asked her to take notes while the doctor talked to us on Thursday. Here are Laura's notes: "suspicious. triple. finding nodes. onca type. mamma print." We haven't the faintest idea what any of it means.

Here's what I remember: the doctor had, the night previous to my appointment, consulted on my case on an oncology webinar with experts from Sloane-Kettering and elsewhere. She wanted guidance on whether doing taxol is going to gain me a benefit that counterbalances the possible costs. The "suspicious" part of Laura's notes comes, I think, from the fact that my tumor looked originally to be grade I, then upon surgery turns out to be grade II. That, and being triple negative receptor-wise, plus the tumor having some lympho-vascular involvement, could indicate that cells were already on the move at the time of surgery.

The answer the doctor got from the experts was ambiguous. The upshot is that they want to see how I respond to the taxol; if it's bearable, we will proceed as planned. If the costs are too great -- meaning bone pain that is too intense, or too much neuropathy begins to accrue in my hands and feet -- we will stop.

So far, I am okay. Bone pain usually begins on day 3 or so, and today is day 3. There is a bit of a ticking bomb aspect to this, emotionally.

I do feel some neuropathy in my hands, a schmancy word for sensitivity, numbness, and tingling. It's actually nerve death, and it's generally cumulative and can be permanent -- hence the caution. I am extra sensitive to cold and hot, and my thumbs are red, peeling, raw. I wore rubber gloves to hang up the laundry outside -- it's a glorious morning, and we hope to bring in the smell of spring on the sheets.

I know some people who have gotten part way through taxol and then asked to stop. The pain is too much, the fatigue too overwhelming. I really hope to slog through it. At the beginning of all this, my focus was on following the prescribed chemo regimen, figuring out how to shape-shift certain aspects of my life to make room for chemo, all that. Now my attention is on decreasing the chances of recurrence. Now it is on making it to the five-year survival point. It is a subtle mindshift, yet I feel it through and through.

We asked the doctor how we would know if the cancer has spread. "You won't," is her answer. You won't know until it's created some trouble for you. I hate this answer.

In the meantime, we are to feel, gently, for lumps and bumps, particularly around the lymph nodes and the erstwhile breasts. Since each breast was done by a different surgeon, they've healed differently, and there is more leftover breast tissue on one side. I don't like that. If I'm going to take off the breasts, I want all the tissue gone. That's the whole damned idea. That's what makes the loss okay.


Here is a shot of me in this spring's fashion.